The Man Who Works For Something Greater Than Himself by Janice Tindle

2017 was supposed to be The Year of Me. After seven long years struggling to rebuild a new me and a new life after a 2010 car collision, I was so confident that I would have another crack at becoming happy, that I wrote a blog post in March proclaiming my victory. I decided to start a physical recovery program and started to work a great new concussion doctor.

I should have never done that.

It’s like when you go into an empty ER and mention to the staff that it’s so quiet and empty. They cringe because just when you think it’s calm, the storm comes out of no where.

The stress of living with chronic pain and being a disabled caregiver really did a number on me this year. I don’t know if I had an undesirable side effect to a medicine or if it was just a huge back log of stress and really bad advice, but in an a moment of stress, I had my most precious and proudest writing accomplishment with a caregiver magazine, taken away. I had found out that a nurse who runs a website newsletter for caregivers, published a poem that I had written for my father. She took it without my permission or the caregiver magazine website’s permission. I demanded that she remove it. I followed the advice of a so-called successful writer who sends out emails to writers. She had written about copyright issues. Based on my conversation with her and her advice, I sent out the removal notice. The nurse never replied, so I had to call them personally. I spoke to someone other than her, but, they did remove it. It was supposed to be an honor, stealing my work. As for the caregiver magazine, who had printed several of my pieces and profiled me as a fearless caregiver, they responded by removing ALL my work. I don’t exist in that online caregiver magazine or newsletter anymore. This broke my heart. It was like a death. I cried for months in anguish. I became depressed. I pleaded with them via emails. Silence. A deep depression set in. The self-proclaimed advice expert, went MIA for awhile, only to finally tell me, basically, “ Writers get ripped off all the time. There’s really nothing you can do.”

Great. Another lying hypocrite, I thought. Who do I trust? I had already had two other broken promises regarding work not only fall through, but went on without with me. So I stopped writing. But more death was to follow. This time, it was literal.

I lost a 4th cousin to cancer who died within two weeks of diagnosis. Her mother, my 3rd cousin, with whom I was very close, mourned the loss of her eldest daughter and by the end of May, she too, was gone. The time in the hospital and great grief of watching my beloved cousin die, showed me that I wasn’t as on top of my post TBI like I thought.

And then, two weeks after her funeral, on the first day of my new physical therapy appointment, I hit my head bending down to pick up my socks off the bathroom floor.

What followed was intense massive migraines. Not just migraine, but “ I want to die migraines.” This was also with a feeling of, “ I’m all the way back to square one.” All the initial symptoms of concussion came speeding around the corner like a NASCAR driver trying to prove himself.

I was out of it for a few weeks. Talking and thinking about anything but brain injury. My neck, the migraines, my stomach, the blurry vision, insomnia, depression, brain fog and severe exhaustion. How was I going to go through this again?

I felt very, very different. Not even my old TBI self, the one I had gotten used to. I really thought I was going to give up this time. All I wanted was the Botox. I felt that it would ease the pain. Nevermind, that the last round I got, it was too much and couldn’t hold my head up for three months, I just wanted relief. Due to some unfortunate events, I had to wait a month. It was pure agony. All alone in my bedroom in the dark, in migraine with a stomach infection and not understanding what was happening. The vertigo came back. The dystonia got worse.

I tried, I really did, to just give up. It was too much to go through a third time. But, bless my heart, my will is stronger than my concussed brain. Stronger than post concussion syndrome. Stronger than the weakness that you feel when you hit the bottom of the mountain you’ve been climbing for seven years.

My concussion doctor ordered several therapies, but I had neither time, money or energy. In spite of the fact that I had only minimal vestibular and vision therapy, and nothing else, by October, I started to slowly come back to life. After five months, I was about 40%. There was a definite anger and grief process. I would have get my body back to fabulous again. Ok. But what about the post concussion symptoms?

So, with money being tight, not being able to function, needing help, and getting behind, I went searching for help. I got turned down everywhere. Social Security, TBI Waivers, Anything to do with disability, any volunteer agency. I just couldn’t manage to fill out the forms or follow through by myself. Remember, I take care of my mother, so I had to chose. I needed money for my therapy. I couldn’t sell anything online for a profit, and I got ripped off more times this year then you can imagine. Three contractors, two-consignment shop owners and in a few online transactions. I had no strength to fight them all.

Several very bad men got away with cheating me. I’ll have to let God take care of Basically, my life savings went into the pockets of thieves. And they trashed my possessions while doing it. These are the people that make life miserable. But I’m not going to continue talking about them. Instead, I’m going to tell you about the kind people.

It seemed that nothing was going to go right at all. The stress was getting to be just too much. Our household is needing to move, but we are struggling to make that happen. There’s just been too many illnesses within our family unit and too many people who took advantage.

Then there’s the world news. So much stress and anguish. People are so angry, rude, and impossible to deal with these days. I do believe it’s the fulfillment of Bible prophecy, but that doesn’t make it any easier to deal with.

And that’s where a few kind individuals come in. The first one is Justin Ruble. I had taken a car service to the bank drive though before going on to an appointment to see my doctor. I never use the drive- through, but since I was running late, and in pain, the driver suggested it. It went fine and he did try to assist me, but it was cramped quarters, so I did my best to use the tube. Its because of my braces and dystonia having to twist the tube open while putting in my driver’s license and deposit that I had trouble. Donald, the driver asked me about how I liked my bank. I told him that I liked it very much and in fact, they were having a promotion where he’d get money and so would I if I referred him. I asked the teller to include the information. She did, but when I tried to get everything out, what I thought was the referral card fell under the car. Donald, the driver really wanted to get it, but as I was late for my doctor appointment and they charge you if you’re late, then make you wait sometimes, I said no. I was in pain. Also, cars were behind us, and you know how impatient people get. I made another trip ticket with him and off we went.

The doctors office usually asks for my ID information, but this time they didn’t. My mind was on my health that Wednesday.

I didn’t check my purse the next day so I didn’t know I was missing anything.

Then, on Thursday night, I get a FB message from a stranger.

“Hi Janice, I was at the bank in south hills cleaning and I found your ID in the drive through. I left it inside of the bank and it should be there waiting for you.”

It was a young man by the name of Justin. I looked in my purse immediately. It wasn’t a referral card that had dropped out of the tube and went under the car, it was my driver’s license! It laid there all that time and amazingly, in this world of scammers and thieves, no one had found it before Justin! I looked at his FB profile. I saw a young man with a beard who loves the Pittsburgh Penguins and country music especially, Garth Brooks. A typical young man who has fun, making memories with friends especially, his best friend Larkin, his dog. As I looked at Justin’s FB life in pictures, he looks like a happy and contented man. At 29, he seems to have enough as a business cleaning service franchise owner of BuildingStars and a subcontractor at CBF Enterprises, to say to me that my gratefulness was thanks enough.

But I disagree. Justin returned it to the bank because he had empathy. He told me that that his friend had recently lost his identification and had to go through a great deal of stress. For me, being disabled with dystonia, living with chronic pain, searching frantically my license, after I did finally realize it was gone, would have been a huge ordeal to replace it. Plus, I really liked my picture! You know how , hard it is get a good picture on a license, right Justin also had integrity. He didn’t take it and use it to make fake IDs nor did he leave it there thinking it wasn’t his problem. Justin had sympathy for this poor woman.

Having the trust of the the bank where they know me by name also says a lot about Justin. My mother-in -law cleaned for decades for the David Weiss stores, so I understand how important it is to these companies that the people who are there at night have a strong moral character.

That night, after I had received the Facebook message from Justin, my mother became ill and had to go to the hospital. I was there all night, and by 5:00 a.m., they said she was okay, just needed a change in her medicine. So while she stayed, I called the car service again and went home. Exhausted, with my hands full of her stuff and mine, I guess my dystonia snd arthritic fingers didn’t hold on strong enough to my Loopy phone loop and I left my phone behind with a second Donald. I was frantic. I wanted to go to sleep. I started calling my phone. It has two locks. What if he can’t answer? I started to email the service, but my husband got through to Donald. No worries, he’d bring it back. Well, it’s a terrible thing to be without your phone. Try it. Sheer panic. Especially when you’re mom’s in the hospital. Donald did bring it back. I tipped him on my phone, $22.00, the max it would allow, and then Uber charged me a lost/return fee of $13.00, which went to Donald. He was very nice about it. I went inside. A lack of sleep migraine approached.

I awoke later that day to a message on Letgo for free furniture. It was nearby so, we made arrangements to pick it up. I never get these things, but this time, we got it. Now let me tell you about these people.

They are family caregiver’s too. Their mother, at 96, just went into a faculty and her lovely ranch, a home we would have loved, was sold on the first day. There was this lovely wrought set, just in need of a bit of TLC. My mother would love it. Also there was two indoor settees that we could sit on without much discomfort. These are just perfect for our new small den, that’s really more of a pass through snug. No other furniture would fit really. I was having a difficult time finding two at 53 inches. I had searched for a year. They told me if they the people in line before us didn’t come by 8 that night, they were ours.

I waited and hoped. At a few minutes past 8 o’clock they became ours! This lovely family even helped us deliver. Amy, Mel and Carol and their grandson. Good people. They even left it open that if they can ever do anything for me, let me know. I know it wasn’t just words. Mel and Carol have a sincerely that is surpassed only by their humble and modest spirit. They are the reason I have loved living in my community for 30 years. There are good people here.

Speaking of humility and modesty, these recent changes in my experiences with humanity has made it clear to me that my very specific prayers just recently for the health of our family unit and for the end of the suffering on this planet were heard and blessed. I know God is listening and is just waiting to hear from us.

I’m hoping this is start of things turning back in the upswing for me, but no matter how many little pieces for niceness that happen, it won’t change the fact that I will have medical needs for the rest of my life, in this life, because of my brain injuries and dystonia. Still, little things mean a lot. That’s why I wrote this after such a long absence from my blog.

I wanted to remind you all that it doesn’t take much at all to make a difference in someone else’s life. It just takes a good heart. What is your heart going to do today? MAN WHO WORKS FOR SOMETHING GREATER THAN HIMSELF WILL ULTIMATELY BENEFIT HIMSELF THE MOST photo used with permission from Justin Ruble’s FB photos.

Brain Injury Awareness Month, March 2017

The first time I saw a brain injury awareness video was during Brain Injury Awareness Month. I thought it was wonderful. Every year, different ones came out, and they were all wonderful . I dreamed of one day making my own with beautiful graphics with brain Injury facts set to music and I’d be singing again. You see, after my brain injury in 2010, I lost my ability to sing. I wrote it it in this blog. It was just seven months that I reblogged my sadness over not being able to sing; https://www.google.com/amp/s/janicetindle.com/2016/05/21/ah-to-sing-to-dream-by-janice-tindle/amp/

So, to have the two come together at the start of this year was truly a happy moment. It happened quite by accident. One day, while in the waiting room of a doctors office, I heard on the radio one of my favorite songs, The Lennon- McCartney song ” The Long And Winding Road.” I hadn’t heard it in a very long time and I had forgotten just how beautiful it was. That night, I looked it up on you tube and started to sing along. To my great surprise and delight, I was not displeased at how I sounded! Not great, but not bad either! What makes this so amazing is that a short time before this night, I was being assessed very throughly in because of a suspected stroke. 

You see, I woke up one morning with a frightening pain in on the left side of my head and a severe pain throughout. I sat up and started to speak to tell my husband that I thought it was trigeminal nerve pain, but, all that came out was a bunch of gibberish. Was it migraine or stroke? Well, after not one, ( in which it happened again) but two trips to two different hospitals, I was told that I probably had had a couple of mini-strokes. 

I didn’t appear to suffer any great damage from the incidents, ( although I did find out I few things about my health that I didn’t know) but two wonderful things happened; my ability to sing again, and my vision actually improved enough that it warranted a new prescription! That is amazing! I found one other story online of a man whose vision got better after an actual stroke, so I guess it does happen! 

Anyway, I recorded myself just for my own private viewing to see what I really sounded like and if I could improve at all. It came out satisfactory, so I then made a few notes on a pad and added them as I had seen others do and recorded it because I wanted to share my joy with my other brain injury/movement disorder/ TIA survivors to inspire them to never give up! 

So without further ado, here’s my simple little video. I hope you like it. And thanks to John Lennon and Paul Mcartney for writing such a beautiful song. The song in the background is a karaoke and not the The Beatles record. I do not own the rights to the song. https://youtu.be/R6oAsc25s8Q

Janice Tindle, 2017 photo owned by Janice Tindle

Brain Injury, Dystonia and TIA Awareness: Year of Self-Care by Janice Tindle

This is my first blog post of 2017. I’ve declared this my “Year of Self-Care .” Last year, I got off track a bit, but it’s never too late to change, so I’m getting my rountine exams out of the way at the start of this year. That way, if something needs addressing, it won’t interfere with any future plans. Best to find out now if something is wrong before it gets out of hand. There really isn’t a downside to self-care, so I’m embracing it. I’ve already seen how much benefit as come from the change. 

So here’s what I devised for myself. I’ll share it with you all. I’m not telling you what to do, I wrote to myself as if I was talking to me, the reader. If it pleases you, you’re welcome to join me. 

One of the first things I did was to make the decision to leave Facebook. I’m still working on deleting my account and pages, but, in light of recent events that I happened to see on the news as I sat in a doctor’s waiting room, I’m so happy that I’ve spared myself that unnecessary drama. 

The next thing was reestablishing my former mindset of taking the time to the niceties for myself again. Hair, mani-pedi, wearing my favorite clothes and jewelry, just for me, even if I’m not going out, because it makes me feel happier. Remember ladies, when as a little girl you played dressed-up? It was fun. It’s still fun. It doesn’t have to be much, just a switch from those ratty robes and sweats into slacks and sweater is a huge plus! Switched out those slippers for “outdoor shoes” just to see if I liked how that feels. 

Diet and nutrition. As healthy as I can get without it being a burden. Same with exercise. Every positive is a positive. I congratulate myself for each improvement I make and then make it part of my regular routine. 

Another thing is making and keeping my doctor appointments and therapies. That’s a tough one. It’s quite a burden to plan, get ready and go when you never know how you’ll feel. Responsibilities come up, emergencies happen, dystonia happens, migraine happens, but, keeping these appointments, especially the physical therapy, is important, so I’m determined to follow through and get my body stronger than it is right now. 

My health is my most precious possession. I think everyone should feel that way about themselves. Every year should be the “Year of Self-Care.” For me, I’m committed to this promise, so I’m expecting to be healthier next year than I am right now. 

Which brings me to my new video. It’s about the art of self-expression, creativity and that wonderful self-care; respite. The heart and mind need a break of constantly being absorbed in responsibility. 

I have been wanting to do a brain injury awareness video for years. I had big plans for a big project, but last night, I made a very simple, but heartfelt little video. Part of self-care is meeting your goals in a simple fashion. Big productions are wonderful, but not doing something just because you can’t do it up big, is denying yourself the joy of having experienced it on a small scale. Sometimes the little joys are the ones we remember most fondly.  I hope you like this little video. Please feel free to share it with anyone you feel needs encouragement. Thanks, Janice 💚

How To Love Someone With Dystonia by Janice Tindle

I can’t remember the last time that I gave someone a great big exuberant hug or got one. I can’t remember caresses, being held close or engaging in that enthusiastic wrist holding handshake. I can’t remember group dancing, or even being held close on the dance floor. Well, I can, but I won’t let myself, because it makes me too sad. 

Since I got dystonia, I can’t do a lot of things that I used to do, and people can’t touch me in the ways they’d like; hugging, holding, squeezing.

But that doesn’t mean that I can’t be loved.

Let me explain; 

The other day, as I was getting Botox, I screamed out as the needles went in on the left side of my head, particularly around the trigeminal nerve and jaw. The neck and shoulder hurt as well. ” My whole left side hurts,” I said to the doctor. He tried to distract me by joking. ” I could have Kim, ( the nurse) start singing. She’s always breaking out in song from some musical.” She laughed and said, ” Sure, what do want to hear?” My husband, Dan, who was sitting in a chair across from me said, ” Why don’t you sing something from, ” Left Side Story.” I smiled, and chuckled. He’s good at that, when things get tough. 

Make us laugh. If just for a moment.

I can’t physically do the things I wish I could I do, like running the vacuum or scrubbing the floor. 

Be our bodies. Do for us what we no can longer do. 

The old standbys still apply, people in chronic pain still like pretty things. 

Show us you care. Bring us flowers, or a gift bag of something wonderful to make us feel that you still have lovely feelings for us. 

And speaking of feelings…

Write us a love letter, send a friendship card, or just write an old fashioned letter reminding us of how much we mean to you. 

Just because we have dystonia, we’re not dead. We’re still here, and we’re lonely a lot. 

Include us. We miss your visits, phone calls and invitations. 

It takes a lot courage to live with dystonia. It takes a lot more courage to keep being strong when your loved ones walk away because they are ignorant about your condition. Which brings me to the biggest one…

Believe us. Dystonia is a very painful neurological movement disorder. There are many forms of dystonia. Ask us what kind of dystonia we live with everyday. Educate yourself about dystonia. Ask us to recommend a book about dystonia. There are several online that are quite good. Go to a website like DMRF.org or http://www.dystonia.org.uk.  Join or come to a support group for friends or families of people with dystonia. Write “dystonia” in your search engine box and start reading. Watch YouTube videos. Watch a documentary or news report. We will be happy to help you learn about all the complexities of dystonia in all its many forms, but we’ll be happy if you just read enough to help make our lives a little easier. 

You’ll find our options are limited and the research is too, so look into supporting us in finding a treatment of something more than just symptoms. Oh, and a cure would be nice. 

Support us.  We may ask you to help raise awareness or support research. Please do. We’ll feel uplifted and so will you. ❤️️

#HAWAC #Writing Success ” I didn’t give up, I finished the #wegohealth challenge!” by Janice Tindle

 The WEGOHEALTH Activist 30 Day Writing Challenge, Day 30! 

“It’s the last day of HAWMC! Congratulations, you completed 30 days of writing! Take this last post to reflect on your health advocacy journey and set a goal for the next year. Perhaps you want to try a new platform for your activism, attend a patient summit, or start a podcast. Remember, “
goals high, and don’t stop till you get there.”
 

Well, I did it! Thirty posts in thirty days! This is a first for me. I tried to do a writing challenge last year, but my hands were could hardly function. They are still a problem, but, I’m learning how to manage my daily use effectively. I’m always thinking about ” arm use time.” 

I have three things I fantasize about doing at least once that would be really fun and promote health advocacy: 

1. Do a stand up routine 

2. Write a really good book

3. Have a online radio show

Those are the fun things! My other goals are much more serious. 

1. Find ways to serve God more fully 

2. Get healthier and stronger 

3. Become a better caregiver and advocate for my mother

I’d like to thank WEGOHEALTH for this amazing challenge. I’ve thoroughly enjoyed it and I’ve learned a lot about myself and others. With the use of this platform, I was able to get things off my chest that I wanted to say for a long time. 

I also received many, many wonderful comments that have made me feel very encouraged to keep writing and being a voice for those who can not put their pain into words. 

I want to write more of the uplifting and inspirational stories that help people through the rough hours. I hope people will read them. ❤️️

#HAWMC #TBI ” The Thoughtful Vegetable, Angela Ronson’s blog” by Janice Tindle

The WEGOHEALTH Activist 30-Day Writing Challenge, Day 29

“Have you checked out fellow HA’s pieces for our HAWMC? Choose one of your favorites and repost it to your blog. Be sure to include a few sentences on why you love this piece!”

Who do I choose? Well, I have to go with loyalty on this one. I nominated Angela Ronson. I challenge her to do the 30 days, and she did. She is also a fellow admin on The Traumatic Brain Injury Resources FB Page and when I leave FB at the end of the year, she’ll be there backing up Trina Chambers- Bradlee. That gives me peace. She has an amazing story, truly unique. Angela is definitely the one blog everyone should read because she’s supposed to in a coma. Mind blowing blog. The Thoughtful Vegetable by Angela Ronson. Check it out. http://thoughtfulveg.blogspot.com/?m=1

#HAWMC #Health Focus; “Challenges & Victories” by Janice Tindle

The WEGOHEALTH Activist 30-Day Writing Challenge,Day 28

“5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small
victories) that keep you going.”

Challenges:🤔

🤔” The spirit of course, is eager, but the flesh is weak.”- Mark 14:38.

I can not physically do the things I want to do. That’s very frustrating. With dystonia, the more you move, the more your nerves twist your muscles. It’s like being “wrung out” continually. The pain is nonstop, and yet, we endure. 

🤔Being understood instead of judged. Stress makes any neurological disorder worse. If I spasm as a result of stress, it doesn’t mean that my condition is psychological. It means I’m having a neurologal response to stress. 

🤔Getting help and support in all areas of my life. If I had a personal assistant everyday, I could accomplish my goals. 

🤔Having both visible and invisible conditions, none of which is curable or easy to manage. It’s very hard to try to keep yourself as healthy as possible when your body is going in the opposite direction. It’s a battle. I’m very high maintenance. 

🤔Being depressed or having anxiety about having chronic pain is a symptom and not the same as having an actual mental illness. Why is this so hard to understand? 

Victories: 😊

😊I’m still here, fighting. I’m currently using neuroplasticity to manage my health and it’s working. Ups and downs, ebbs and flows, but always moving forward. 

😊Becoming an internationally published writer. Writing has been such a stabilizing factor for me. It’s builds self esteem and confidence. 

😊Having people tell me that through my words and example that I’ve helped them accept their disability, moved them, changed their opinion, thinking or response towards the disabled, inspired them, and that they were able share my words with others to help them understand what they are going through. Having people tell me, “you write want I feel.” 

😊I helped get a disabled parking space in front of my doctors office by contacting the city each time I got there and a non disabled person was parked in the spot. I sent them pictures of me and the car in the space.  

😊Reported two spam websites who stole my article and made themselves the author of , ” 7 Ways To Support A Loved One With A Traumatic Brain Injury” for copyright infringement and violations, to remove it. They were later closed down. 

😊Having the courage and self love to walk away from toxic people and unhealthy situations ( like leaving Facebook at the end of the year.) Although a lot of the above victories happened because of Facebook, a lot more challenging circumstances happened that created problems for me. I believe that my health focus is stronger without Facebook being a daily focus in my life.

(I bought this painting recently. I intend to use it to help me with my visualization therapy. ) 

#HAWMC #Sunday Selfie #Marriage #Caregiver

The WEGOHEALTH Activist 30-Day Writing Challenge, Day 27 

“Sunday Selfie: Post your favorite picture of yourself. Don’t be shy, it’s time to shine!”

This is easy. My wedding day. Not a selfie. 

It’s my favorite picture of myself because I was young, healthy, vibrant and strong. Most of all, I was happy and content. This picture was taken on my wedding day. 1980. The world was my oyster. No physical boundaries, full of joy, hope and endless aspirations. On this day, there was no thought of sickness, heartache or trouble. No thought of loss, aging or untenable situations or impossible circumstances. The future was bright. We had freedom and exuberance. However, the marriage vows are for ” better and worse.” When the worse happens, that’s when you find out just how strong the marriage bond is. The man next to me became my caregiver and took my mother in to live with us. “For better or worse, for richer for poorer, in sickness and in health, till death do us part.” Amen. ❤️

Just to give you some perspective. This was written after a night filled with horrible pain from dystonia. I worked physically hard all day yesterday. It was unavoidable. I woke up feeling exhausted , but, it is time for my mother’s shower. As I help her take a shower, tears of pain fall from my eyes to the floor. They are indistinguishable from the drops of water coming from her body as we towel it dry. In spite of terrible circumstances, you can still create beautiful art. The pain is temporary. The art and memories last forever. 😀

#HAWAC #Care Page for the newly diagnosed #TBI #brain injury patient.” by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge, Day 26

“Time to use all your knowledge and experience as
an HA! Create a “Care Page” for newly diagnosed
patients. Pull together 5 of your own blogs that
could help a newly diagnosed patient and include 5
external resources you find helpful.”

I’m so glad for this writing challenge because it will be a very nice resource for anyone who has suffered a traumatic brain injury. I always try to “keep it real” by telling you my story and what worked or didn’t work for me. If you have a TBI and are new to my blog, this is the condensed version! Enjoy! 

1. Hope, Faith and Love. These are your most precious resources. Collect them up and always keep them within your sight and reach. 

Three Is All You Need   by Janice Tindle

2. You are still beautiful and valuable. 

The Flawed, The Broken, and The Beautiful /Written by Janice Tindle

3. How to get others to understand what you’re going through.

7 Ways To Support A Loved One With A Traumatic Brain Injury by Janice Tindle 

4. Do something, big or little, to make a difference in the lives of others with your condition. 

#HAWMC “Did you just say what I think you just said?”  by Janice Tindle 

https://janicetindle.com/2016/08/02/how-neuroplasticity-is-changing-my-life-by-janice-tindle/

5. Contact, learn and heal with fellow sufferers. 

#HAWMC “Favorite Health Advocates for TBI” by Janice Tindle 

5 External Resources 

https://m.facebook.com/Traumatic-Brain-Injury-Resources-608238092646488/

http://m.brainline.org/resources/index.php

http://www.tbinrc.com/

http://www.biausa.org/brain-injury-community.htm

http://www.headinjury.com/

#HAWAC #Healthcare Landscape Change; ” The 30 second judgement.” by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge, Day 25

“As health activists, we are on a mission to innovate healthcare. If you could change one thing in the healthcare landscape right now, what would it be?”

This is something that really annoys me. The 15 minutes you get for your doctor visit. It’s okay for you wait 1-2 hours in the waiting room, but, when the doctor, after making you wait, comes in and hurriedly makes a diagnosis and comment that goes into your permanent medical record, it hardly seems fair, does it? 

If you’re a patient with a chronic illness and you’ve been sitting and waiting that long, you’re tired, sick, and in pain. Maybe you’re a little anxious or at your wits end. After all, it’s been hours since you left your home. Maybe you’ve been listening to the conversations of other patients and their problems. Perhaps you’ve read one those health or medical magazines that tell you to “ask your doctor if this is right for you.” You have your list of questions and concerns and your trying to figure out how to get them all answered in 15 minutes. 

You know the drill. The nurse comes in and takes your vitals, asks what medications your on and why your there. They ask about changes from your last appointment. Then they leave. 

You sit there, on the exam table, legs dangling, waiting. You wait some more. You look at your phone. You’ve been here over two hours now.  You’re late for the next appointment. That doctor charges $25.00 for no shows and if you miss it, you’ll have to wait months for a new appointment. Should you call? The sign on the wall says, “Please turn off your cell phone.” Just then, the doctor comes in with a computer in hand. 

” So what brings you in today?” They sit down at the desk and begin to read and type. You’re asked the same questions that the nurse asked you a little while ago. You answer. The doctor types. More questions. More answers. The decision is made. 

You get a script. You try to address the questions you have on the crumbled up piece of paper that you’ve been clenching in your fist. There’s no time. The doctor gets up and moves towards the door. Except for the vitals, you were never touched. There was no physical exam. You try to voice a concern and the doctor’s hand goes on the door knob.

” I’m sorry, but your time is up, you’ll have to discuss that at your next appointment or call the PA and make an appointment. ” As they complete the sentence, they close the door behind them. 

You feel frustrated, exasperated and dejected. Most of all, you still feel the same way as you did before you left the house. You don’t know what to do about your condition or how to improve. 

The nurse comes back in and hands you your script and check out papers. You’re directed to check out where they make your next appointment. You look at your diagnosis for today’s visit. All the same conditions are there except the doctor has added a new one. Anxiety. You leave, finish your day, go back to your home and fall into bed. 

These are the doctor appointments that I would like to see change for people with chronic illness. 

This was just a fictional scenario, but, it does still happen to patients in the healthcare system today. The business of illness has at times, overshadowed the life of the patient. 

Fortunately, for me, this doesn’t happen anymore. It doesn’t because I don’t go to doctors who are under this insurance and corporate fueled system of care.

When I was a little girl. I had to wait in a big waiting room to see the neighborhood family doctor. There were no appointments. You just showed up, took a seat, and waited. Sometimes my mother brought me lunch. Because I loved to read, I didn’t mind sitting there for hours. The difference was, when the doctor finally did see you, you got a full physical, all of his time and attention, and sometimes a procedure. He even stocked his medicine. I’ll be writing about him soon. He was worth the wait.  

#HAWMC “Did you just say what I think you just said?” by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge, Day 23

“Say WHAT?! What’s the most ridiculous thing
you’ve heard about health or your condition. Was
there any context? What did you think at the time
you heard it – and what do you think of it now?”

About a year after my traumatic brain injury, my rehabilitation therapist got me into a brand new study that was being done to diagnose brain injury. It has been written up and talked about quite a bit lately, but at the time, I was one of the first to experience a very small MRI that took fiber tracking images of the brain. The machine was very loud, it vibrated and I was in there a long time. That in itself would have been enough to rattle anyone, but it was especially difficult for me because I was in migraine when I went in, and in excruciating migraine when I came out. I remember praying the whole time saying, ” The Lords Prayer ” over and over just to keep myself from freaking out to the point of no return. I saw flashing lights, jagged lines, and bursts of exploding auras. My head felt like it was on fire. My body was sweating profusely and it felt like I could barely breathe. I tried not to think about how small the inside of that MRI was. I kept my arms clutched up against me and yet they still were touching the cold metal sides. 

Did I mention that I’m claustrophobic? 

I held on to the little ball that they give you to push if you get into trouble like it was a direct call button to God. I wanted to push it and get out, but I wanted something else even more. I wanted to be part of the reason and solution to understanding brain injury. I wanted the personal satisfaction that I helped bring an end to the suffering of those who aren’t believed about their brain injury. I wanted to be able to say that I was part of the first trials that enabled doctors to believe that when a person said they were having difficulty with memory, cognition, mood or bodily functions, there would a MRI that the doctors could order that would show them that the person was indeed, telling them the truth. A human lie detector to wipe out the lines between mental illness, malingering and brain damage. That’s how I looked it. I was proud of my courage. It was, and for reasons that I can’t explain fully, the bravest thing I’ve ever done in my life. 

It was probably the most I ever did during a migraine, but, I did it for humanity and I did it for myself. I wanted to put an end to my own mistreatment. The latter didn’t quite happen, but I can say that I did everything I could to help myself and other brain injured people in the best way I knew at the time.

When I came out of the MRI, I was dizzy, disoriented and my head was pounding like a locomotive with a engine full of fiery hot coal. It was on track into Hades and I was along for the ride. 

I was given an ice pack and a bottle of water. I took another Valium and a pain pill. And then it happened.  I was sitting in the inner waiting area shaking and spasmodic from my yet to be diagnosed dystonia and vestibular disorder. The nurse involved in the study was in the room with me along with my rehabilitation therapist. They were discussing my chronic, intense migraines. My therapist explained how severe and debilitating my migraines were to the nurse. She listened and then said to me,

” Janice, If I had as many migraines as you, I’d kill myself.”

Now up to that point, I had been sitting there trying to collect more courage for the long ride home in the bright sun. I was telling myself that I had just done something very important. I was telling myself that I if could survive that experience, I could survive anything. I was telling myself that I was stronger than my pain. I was thanking God for getting me through that MRI and asking that it please not be for nothing. Please let me just get home to bed.

And then I heard her say that. I don’t know, maybe she went to medical school with the same doctor who told me, ” You should be better by now.” The one who rolled his eyes, threw his hands up and wrote me off as a mental patient. I mean, the big deal health system had several doctors who said some really horrific things to me. Me, a brain injured woman with dystonia, vitamin D deficiency, Hasimoto’s disease, hypothyroidism, fibromyalgia, trigeminmal neuralgia and inner ear damage and all the symptoms with go along with those conditions. Me, a middle-aged woman with a double-fused cervical spine, osteoporosis, osteochrondropathy, osteoarthritis and several healed fractures. Me, a person living with many legitimate reasons for chronic pain, being psychologically abused by misdiagnosis,mismanagement and mistreatment. And yet, here I was, in a TBI study. One of two actually, at the same time.

And I’m told,

“If I had as many migraines as you, I’d kill myself.” 

Yes, she really did say that, a nurse, to me, after I had just volunteered in a study that might end up changing the way brain injury is diagnosed and treated.

No graditude. No compassion. No sympathy or support. Possibly the worst nurse ever.

But, I went back and I did it all again because they asked me. I did everything they asked of me.

When I got my first report, I had to meet  the neurosurgeon who was in charge of the study. My husband and I waited a very long time, because as he later told us, ” I’m a busy dude, man.” Anyway, he walked in and said, ”  You’re not crazy. You have a brain injury.” He then went on to show us the four areas of my brain that were damaged. They were the four areas in which  I had said I was having trouble. Of course, this was a preliminary study, so that’s why I went back for the second one. The next time, the MRI was bigger and not as loud, but I had to be in it for 45 more minutes past the time because they had to do some pictures over. 

However, I didn’t end up getting the pictures they said I would, so I’m not exactly sure what happened. 

I’m told the MRI will be available in a few years as a tool to diagnose and treat brain injury. I’m so glad. 

I still continue to have the same problems that I had then. I still get migraines. Every eighty-four days, I get Botox injections in my head, neck and shoulders. But I’m still here, so clearly, I’m a lot stronger than that nurse. 

In case you’re curious about what it’s like to get Botox for migraine and dystonia, I made a video. https://youtu.be/LKYNQtWpATA https://youtu.be/qmrUyxTKPgw

Don’t say things like that to people living with migraine . Especially to someone who is giving it their all everyday just to get through to the next one. Instead, thank them for their courage and offer a helping hand any way you can. 

We are all in this together. Let’s try to act that way, shall we? 

Janice Tindle holding a magazine with an article discussing the kind of study in which Janice participated.

#HAWMC ” #TipTuesday is #Giving like a wee #philanthropist by Janice Tindle

The WEGOHEALTH Activist 39 Day Writing Challenge, Day 22

“Tip Tuesday! Have you mastered the hashtag? Figured out the Instagram algorithm? Or maybe you have a few tips to increase your blog followers. Whatever it is, share your expertise with your fellow HA’s- it’ll only make our community stronger!” 

This one has me stumped. I am really undereducated on these things and that’s why I don’t have more blog followers. I need help in this area myself! I haven’t had time to learn social media marketing in depth as I should. I want to, but this is the part of my brain injury that makes daily learning difficult. I do better if someone shows me rather then reading directions. Several times I did take the time to learn some things. I got them set up and working, but, the system was changed and I wasn’t able to adapt to the new format. Also, a lot of things need to be done on the computer and I have problems with my hands, so it’s hen-n-peck with one finger most of the time. That takes time and effort, so I try to compensate by writing something with substance and I hope for the best. 

Lame, I know. But that’s all I have on the technical side of things. ☹️️

What I’d love to talk about is actually a good tip for anyone. Giving. Not just of yourself and your time, which is an invaluable gift, but actually giving money to those in a crisis with a big immediate need. 

I’m talking about gifting an individual who has no other resources available to acquire something that will save their life or make it worth living. They need a transplant, a machine to keep them alive, expensive medicine, a device or a vehicle. Maybe they need caregivers or nurses, a special home or an adaptation to stay in their own home. Maybe they need a service animal or help paying the mountain of bills that have been accumulating because there just isn’t enough money. 

What can YOU do for ONE of those people? Hold a fundraiser, share their information with others, do a walk drive? Yes. You can do those things. It would be wonderful if you picked someone and made them your mission. But you’re in need yourself. You’re struggling too, you are stressed out and can’t take on one more thing, so now what? 

Well, almost everyone can spare $5.00. Almost everyone can miss a cup of coffee or a desert. Almost everyone can not buy that meaningless trinket at the $1.00 shop. I could recommend an organization, but this isn’t a solicitation. I know that if your a HA, chances are you already personally know someone who needs monatary assistance. 

So here’s my tip, and it’s just my personal opinion, because the WEGOHEALTH Writing Challenge asked, I feel that in order to be a good health activist or advocate you should experience giving on all levels. They don’t have be high levels. Little levels are okay. It will make you well-rounded and whole. 

There it is, my #TipTuesday advice, HA’s, find a person in monetary need and gift them something from your change purse because all those something’s add up and pretty soon they are healthier than they were before the gift. Isn’t that what’s it all about? 

#HAWMC #TBI #Writing ” I write, therefore I am.” by Janice Tindle

The WEGOHEALTH Activist 30-Day Writing Challenge, Day 20 

“What has been the highlight of your health activist journey? We want to hear all about it, perhaps a conference, a podcast or meeting a fellow HA. What made this experience so special?”

The highlight of my Health Activist journey is glaringly obvious. Writing. I have been a writer all my life, but, it never had a real meaning.  I have always wanted to become an author, but I had nothing really exciting to say. 

My love of writing began when I read my first book, ” Dick and Jane.” I loved that book. I read it over and over. I loved the illustrations. I loved the characters of Dick, Jane, Sally, Spot and Puff. I even named my first cat Puff because he reminded me of the orange tabby in the book. I loved that book because that was the book in which I learned to read. 

So, as soon I learned to read, I started writing. I submitted a poem to Jack and Jill magazine and to my astoundment, it was published! I taped it up on the wall of my bedroom. Sadly, the poem was lost. I have no memory of what it said, but I do remember how being published made me feel. It made me feel…heard. I felt validated and proud. I don’t recall my family making a big deal over it, but my teacher did. She encouraged me to write. She told me that all good writers read. So I read. A lot. I bought books with my allowance and I kept them neatly on the bookshelf in my room. I wrote, but I never submitted another thing to Jack and Jill magazine. I’m not sure why. Could have been a lack of encouragement. Or confidence. 

I became the librarian’s helper and by the time I finished grade school, I was the only one in the school that had read every single book in the library. One hundred and five books. At graduation, I received the Principal’s Award for that accomplishment. I still have that pin. To this day, it makes me proud because I was the only one that completed that task. I have to thank my teacher, Mrs. Fullerton, who was the librarian and music teacher, for being such an encouragement to me. She adored me. For a shy girl with thick glasses and skinny limbs, she was a lifesaver. She put me in all the music programs where I fit and always gave me a solo. At my eight grade graduation, my solo, “IF” by David Gates of Bread, got a standing ovation. I realized there too, of the power and excitement in artistic expression. I learned that for a few minutes, a few very important minutes, I could get people to listen to me. 

In high school, I wrote stories for assignments that were so real, one about epilepsy, for example, that I got called to the Principal’s office because  I had captured the experience of being an epileptic so well, they thought I had the condition! I explained that I was writing in ” the first person” for effect. I guess it worked! 

Flash forward to 2010. A car accident. A brain injury. A shaken brain and a lost soul. No more singing. No more recognizable personality. No more…me. I had to rebuild my life one section of myself at a time. It’s a terrible thing to lose yourself. To not feel comfortable in your own skin, to be lonely for your yourself, your thoughts, feelings, likes, expressions. To mourn your creative soul because in its place is this big mountain of confusion and pain. It’s like someone just came up to you, put a vacuum next to your brain and sucked you out. All of a sudden, there you are, just a hollow soul looking for all your bits and pieces and wondering, ” Where did I go?” ” Am I ever coming back?” ” Will I ever be the same again?” Suddenly, you’re Humpty Dumpty and no one can put you back together again. 

My writing started up again with emails to my attorney. Strange, angry, repetitive emails about my life and what was happening to me. They read like a diary and to this day, I can’t bare to read them because the pain and confusion is just so heartbreaking. I was very, very lost. 

However, my rehabilitation therapist encouraged me to write. She got me online and in touch with the world of the brain injured. That’s when things started to take shape. I realized pretty quickly that this was going to be an uphill battle. The day I discovered, from my point of view, that brain injured people were getting the short end of the health care stick, so, without even realizing it, I became a Health Activist/Advocate. I needed a constructive outlet for my anger and righteous indignation. My therapist gave the suggestion, and I started writing. 

One night, after a week of being on  a drug some doctors like to give to brain injury survivors, I sat down and wrote, ” Three Is All You Need.” It was beautiful. 

The drug unfortunately, was not for me. It kept me from sleeping and increased my migraine. It felt like I was drinking caffeinated drinks all day long. So after a week of that, I had to stop just to get some sleep. 

My therapist loved what I had written. She asked if it could go in their newsletter. She said that it would help a lot of people. So I agreed. Then, with her encouragement, I submitted it to my favorite magazine, Today’s Caregiver. They loved it. So much so, that it went on their online magazine, Fearless Caregiver and later, they made it the title and focus of another issue. I was very proud. It felt just like that day, as a little girl, that my poem was published in Jack and Jill magazine. http://todays-caregiver.tumblr.com/post/115938371066/three-is-all-you-need-by-janice-tindle-ive

I had a purpose again. I had a talent and a skill. Where everything else, including my singing voice and my social skills seemed to have disappeared, there was this one thing, this precious part of me that the vacuum had missed. This was profound because it meant I was still in there, at least in part. I had something to build on. And build, I did. 

I teamed up with a beautiful, sweet soul by the name of Trina Chambers-Bradlee.  We had met in a Facebook support group, became friends, and together we made The Traumatic Brain Injury Resources Page. This was because I couldn’t navigate the computer and World Wide Web to find services for myself. I thought it would be helpful if there was one place, like a FB page, where TBI survivors and their caregivers could go to find financial resources. Trina loved the idea, and since she had the know-how and experience as a support group administrator and seemed pretty good at the computer, I suggested she do it. She was very generous with me in sharing the acknowledgement of its creation. I posted everything I could find as well. Today, there are over a thousand people who use the page. When you consider that it was because I saw a hole in the system and Trina helped me fill it, that’s pretty wonderful. I then learned to make pages on Facebook and I made five others. Each one has been a wonderful experience. I’m leaving Facebook at the end of the year, but I leave feeling very good about what I’ve done to help other people with the same problems as me. 

I started three groups as well on Facebook, and although, as I said, I’ve decided to move on, those groups are still there, each a small, separate niche’ for those who feel alone. 

My writing continued on so that I became a contributor to themighty.com and I continue to blog and write in other places. My article, ” 7 Ways To Support A Loved One With A Traumatic Brain Injury,” was first published on the mighty.com. It has been very well received. I’m equally proud of that article because it has helped so many. https://themighty.com/2016/05/how-to-support-a-loved-one-with-traumatic-brain-injury/

But before themighty.com, I  was humbled to be chosen in 2015 for the very first issue of TBI Hope and Inspiration Magazine. I then became a contributor as well. http://www.tbihopeandinspiration.com/march2015.pdf

And yes, there will be a book. There will be several books. When the time is right, when my responsibilities as a caregiver ease, and when I’ve grown to be what I invision for myself, there will be a wonderful book that I will be proud to have sit on the shelf where maybe some shy, skinny girl or boy with thick glasses and a love for reading will find it. If I do it right, they will become inspired to find that little piece of themselves that the world vacuum can’t suck out. It won’t be a fairy tale, or nursery rhyme. No Dick and Jane primer either, but perhaps it will take hold in just the same way, so they too will  find their inner form of Rene’ Descartes quote and say, ” I _____, therefore, I am.” 

My writing journal made by my cousin, Deborah Kropp

#HAWMC #Beauty #Writer ” I am uniquely beautiful.” by Janice Tindle

The WEGOHEALTH Activist 30-Day Writing Challenge, Day 21

“Monday Motivation: What’s your life slogan? Explain what words or mantra that keep you going.”

So if you have been reading all month, then you know that my mantra is, ” I never give up.” I already discussed that, so I’ll tell you my new mantra for 2017. 

It is….you guessed it, ” I am uniquely beautiful.” 

Why? 

Because as I look over the past 55 years of my life, I see a very imperfect person who has made some really stupid decisions. But who hasn’t, right? I think though that the biggest mistake I made was forgetting what I just told you; 

” I am uniquely beautiful.” 

If I had remembered that, I would have absolutely made less mistakes and been happier. It was when I tried to conform and “fit in” that I ended up being unhappy. 

When I was a little girl, my mother wrote to me in my autograph book, a quote from Shakesphere’s Hamlet, Polonius’ words;

“This above all: to thine own self be true,

And it must follow, as the night the day,

Thou canst not then be false to any man.”

That was actually excellent advice. 

I also had on my bedroom door a plaque that I made with the words of  Henry David Thoreau. It said; 

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.”

I made that plaque because I loved reading Thoreau and I related to that quote because that was how I felt. I was unique. Unique as in not like the rest of the children my age. I liked to read, listen to the adults discuss things and ponder over what I learned. I preferred the company of adults over children, most of the time. I enjoyed my own company even more. I was happy to be in my room all day writing, reading, crafting, playing, singing, or rearranging my things. 

I tried to improve myself because, one, I wanted too, and two, people seemed to be discontent with how I was. 

I got bullied at school over my looks, my thick glasses and my beliefs. I grew to hate school, but I didn’t hate learning. If home schooling had been an option in those days, I probably would have really flourished because my mother was a good teacher and most of the time, I enjoyed her. 

When I turned sixteen, over the summer, I got contact lenses, my body got curves, and my hair got curly. When I went back to school, the boys, the same boys that terrorized me in grade school, suddenly became very interested. I was supposed to be flattered. I was not. I was the same Janice on the inside that I had always been. But they didn’t see it. They didn’t see my unique beauty. And because they didn’t see it, they made me feel ugly. That was wrong. So try as they might, they did not get my attention, because they still, did not see me. 

I think we spend far too much time paying attention to what’s on the outside of a person. Outward beauty will eventually change, but inward beauty rarely does. That’s why we love our grandparents and our parents. We love them for who they are, not for what they looked like when they were young. And they love us, not for the babies we were, but for the adults we became. 

So getting back to my mantra for this year, ” I am uniquely beautiful,” it’s because I am. And you are too. We are all uniquely beautiful. The sooner we realize that and the sooner we stop trying to fit into manmade boxes of what acceptable beauty is, the happier we will become. 

I’m talking about the way God sees us. He doesn’t see cookie-cutter people. He looks into the heart and soul of the individual and sees their POTENTIAL. He sees what they are capable of becoming. He knows each and every one of us. We are all born beautiful. 

Psalms 139:13-18 says; 

“13 For you produced my kidneys;

You kept me screened off in my mother’s womb.

14 I praise you because in an awe-inspiring way I am wonderfully made.

Your works are wonderful,

I know this very well.

15 My bones were not hidden from you

When I was made in secret,

When I was woven in the depths of the earth.

16 Your eyes even saw me as an embryo;

All its parts were written in your book

Regarding the days when they were formed,

Before any of them existed.

17 So to me, how precious your thoughts are!

O God, how vast is the sum of them!

18 If I try to count them, they outnumber the grains of sand.

When I awake, I am still with you.” 
That’s what He wants us to understand. So I’m going to work on that and go in that direction and I’m not going to deviate. 

Janice Tindle, 1962

#HAWMC #TBT “7 Ways To Support A Loved With A Traumatic Brain Injury” by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge Day 17

“Throwback Thursday!
Grab a post from your
archives and repost it! Add a few sentences at the
beginning to frame it. Why you chose it. Why you
liked it. And why it should be shared again.”

This piece was originally written for the mighty.com. According to the statistics that I saw on Facebook, themighty.com and WordPress, it was shared thousands of times and read by over ten thousand people. It was then stolen by at least two spam websites and reposted without my permission or name. I got it removed from those sites that take advantage of all of us. I like it because it has helped a lot of people. I read many positive comments thanking me for writing it. It’s my contribution to the cause, which is; raising awareness about brain injury. So without further ado, here it is:

7 Ways To Support A Loved One With A Traumatic Brain Injury by Janice Tindle 

#HAWMC ” Please Leave The Area Immediately!” by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge Day 19 

“Everyone has tough days, but how do you pull yourself out of the rut? Maybe you blog, repeat affirmations or listen to a favorite playlist. Write about what tools, tips or practices you use to lift
your spirits after a rough patch.” 

Best way to pull yourself out of a rut is to ” LEAVE THE AREA IMMEDIATELY!” 

I find that leaving the house, the workplace, the situation, whatever the case maybe, is what works best for me. A walk outside, a few hours of doing something out of the normal routine, like a trip to the park or mall, can really help shift my focus. It’s the best way  I know to stop the cycle of that days drama. The night lights of some fancy place or a quiet afternoon under a shade tree, are favorites of mine. I’m don’t get to do either one of those enough. 

On those occasions when physically leaving isn’t possible then a mental shift can be extremely uplifting. Listening to music, reading a book, watching an old movie, or just scrolling through funny videos on YouTube. 

Sometimes cleaning out a closet actually clears my mind. 

But mostly, I write. Writing is a lovely creative process that is a neverending gift. People read it, they comment, it lifts the soul. I rarely get people hating on me for what I write, but when I do, that also can get me out of rut and cause me to think about writing something different. 

The rough patch. I have them more than I’d like, but, when you have dystonia and a brain injury, “rough patches” are part of the package. I try to remember that so far, my track record of surviving a ” rough patch” is 100% and that usually bolsters my spirit. I do know that I get really down when the pain gets high, so I try to have someone to talk to, make a spa day in my bedroom, or just have myself a good long cry. They all work. 

In the end, we all must just keep soldiering on, fighting that good fight, and never forget that you are never alone. 

I say to myself, “Whatever you’re feeling, someone else has felt it too. There are no circumstances that can’t be dealt with if you keep believing in yourself and keep looking for the way out. ”

That’s how I deal with a rut and the really tough, rough days. 

#HAWMC ” I hope you feel better!” by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge Day 18

”  What’s a health cliché that really bugs you? What are you tired of people asking you or saying to you again and again? Write it down. Then reclaim it! Take it back and turn it around so you make it something you could be comfortable hearing.”

I had just finished explaining dystonia to someone. I told them that it had no cure, no treatment, and at best, only symptom management. I told them that it was unbelievable pain, 24-7 without let up. I went on to explain that my dystonia affects every part of my body, that it changes hourly, and I never know what will happen to me next. A wrong move could set off “a dystonic storm” and I’m pretty much done for the day. 

” Well, you look like you’re doing pretty good right now,” they said, trying to be supportive. 

” That’s because I take very strong toxic medicine several times a day,” I replied. 

“Well, I hope you feel better!” they replied in a cheery tone as we parted ways. 

😳🙄😳🙄

Were they even listening? Why not say instead, ” That’s terrible. I’m so sorry. I hope they find a cure soon.” Or ” I’ll pray for you.”  Or even better, ” What can I do to help you right now?”

People, when someone tells you that they have an incurable condition, please stop saying, ” I hope you feel better!” It makes you look clueless and leaves us feeling flat. 

I do hope I feel better too. Sadly, dystonia isn’t something that improves over time. Quite the opposite. However, our mission is to look for ways to ease the symptoms and build endurance against this cruel involuntary movement disorder. 

What helps? It’s different for everyone. That’s what makes it so difficult for patients and doctors. And speaking of doctors, those are the only people I want to hear say, ” I hope you feel better!” That’s because they have finally come up with something to actually make people with dystonia feel better. Right now, they offer DBS, which is short for deep brain stimulation, Botox, which numbs the nerves, and muscle relaxers, which a person with dystonia needs just to function. The rest is guesswork. In fact, it’s all guesswork. 

If someone with dystonia uses alternative medicine or complementary treatments and they find some reduction in their symptoms for awhile, that’s a victory for them, but it’s not a cure, and there’s no way of knowing how long it will last. 

If you see us having a “good day” or ” good hour” even, don’t assume there’s been a recovery. It’s just a temporary relief of symptoms. That’s what we live for. So to turn the sentence around to something I’d be comfortable hearing would be after an attempt that trying to relieve my symptoms, the person says, ” I hope this brings some relief to you.” That would be appropriate and appreciated. 

I hope this post makes you feel better about how to interact with a person who has an incurable condition. 

What it looks like when someone says, ” I hope you feel better!” A bit silly.

#HAWMC “Advice For The Health Advocate Rookie” by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge Day 16 

“Wisdom Wednesday: What advice do you have for
health activists just starting out? Share your words
of wisdom for all the health activist rookies out
there!”
 

Okay, here’s my opinion. Warning: it may not be popular, but it works for me. 

Wisdom is a relative thing. There’s man-made wisdom and Godly wisdom. Man-made wisdom would be becoming an expert on something man-made, like, say for instance, automobiles. There’s nothing at all wrong with that unless you know more about cars then you know about Godly wisdom. 

Whenever it was that I needed to make a decision and chose man-made wisdom, or worse, no wisdom, instead of using Godly wisdom, it didn’t work out as well as it would have if I had taken the time to search my knowledge of the scriptures about what to do. 

I’ll give an example that applies to this subject of being a Health Advocate. When I became my mother’s caregiver and advocate, I put her and everything related to her first in my life, because I felt that it was my God-given responsibility to do so. And it is. It’s mentioned three times in the Bible to honor your father and mother. (Deut. 15:16, Exodus 20:12 and Matthew 19:19 which reads; ” Honor your father and mother and your neighbor as yourself.”  So a person who loves their parents and their neighbor ( which is everyone) is supposed to love and care for their own self. Jesus said the greatest command was that, ” You must love Jehovah your God with your whole heart, your whole mind and your whole soul. This is the greatest and first commandment. The second, like it, is this: You must love your neighbor as yourself.”  ( Matthew 22:37-39) Did you catch the last word? What does it say? Yourself. If you don’t love yourself, how can you love anyone else in the best way possible? You can’t. 

In my case, because of the circumstances of my mother’s health condition, I was required to be with her, do for her, protect and provide for her in the way that made her feel safe. I followed the doctors orders, and tried to fulfill my mother’s every wish, even if it was not in my best interests. That was because she was my mother and I love her. 

There’s nothing wrong with loving the person you are an advocate for and trying to satisfy their wishes, but there is something wrong when you find yourself getting sick, tired and exhausted. 

Unfortunately, this happens to a lot of caregivers, advocates or anyone who is passionate about the life of one or many. 

You lose yourself in the cause. 

But based on Godly wisdom,  ” Many hands make the load light.” So, having others to support you is vital. If you find that you have no choice than to go it alone, for whatever reason, get yourself a caregiver. That means the following : 

Hire an assistant.  

Keep your doctor appointments. 

Get a massage once a week.

Go to a support group. 

Talk to someone who can help you that your struggles. 

Get proper rest and follow a healthy diet. 

Learn to say ” No.” 

Do your best and then don’t feel guilty about what was not done. 

After a year of taking care of my mother, my health really suffered. It suffered because I followed some Godly wisdom, but not all. I stopped loving myself. I didn’t even realize that I was doing it because I was so focused on my responsibilities. But here’s the thing, it doesn’t matter if it’s one person or thousands of people that you’re advocating for, if you don’t take care of yourself, you can’t take care of them. 

That’s the simple truth. And yet, we humans fail at this truth everyday. But meditate in this; If everyone was taking proper care of themselves, the stress load would be a lot lighter on everyone. 

So if you want to be successful, take care of yourself. That’s my advice. ❤️

#HAWMC “Favorite Health Advocates for TBI” by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge Day 15

“Time to spread the love. Shout out all your favorite
HA’s! Make sure to share a few sentences
explaining just how grateful you are for them.”
So just because I recently decided to leave Facebook doesn’t mean I didn’t meet some people there who’s work I admire. When it comes to advocacy for brain injury, there are quite a few that are doing outstanding work. They tirelessly run support groups and pages, weeding out the scammers, and monitoring the comments in hopes that no one with a brain injury has to endure anymore pain. That doesn’t always happen, but for the most part it does. Kudos to those run the support groups. 

Then there are the ones who advocate by writing about brain injury. There are a lot. Many websites, books and articles and magazines are available everyday online promoting awareness and sharing their stories.

There also those who do the work offline as well, running support groups, writing letters to authorities, even  giving  testimony at hearings in Washington.

They’re all Aces in my book!

But my favorite has to be The Brain Injury Radio Network. It’s talk radio for those wanting to learn and discuss the life of those with brain injury. 

I had the privilege of being a guest on one of those shows. The host became a friend of mine. Kim Jefferson Justus. You can listen to my interview here: http://tobtr.com/7902069

But that’s not why I’m saying they are my favorite. It’s because it’s survivors helping survivors. It’s comfortable and comforting to listen and feel understood. The guests are interested in helping and the topics are very useful. It’s home for a brain injury survivor. All you have to do is tune in, sit back and listen. When you are ready, you can call in and talk. That’s a big step forward in healing. I remember the first time I called in. I really felt empowered and content to express myself without fear of judgement. 

It’s also the place where I learned about the others who are doing such beautiful things for those with brain injury. 

I’m not going list them. I want you to find them yourself by going to the website and listening to past guests. You’ll find what you need and then you’ll be able to go in the direction that’s best for you. 

I nominated The Brain Injury Radio Network for a WEGOHEALTH Activist Award this year. That’s because they really are that good. 

http://braininjuryradio.org/

http://www.blogtalkradio.com/braininjuryradio

https://m.facebook.com/braininjuryradionetwork/

http://tbisn.org/m/group?id=2603880%3AGroup%3A27585

#HAWMC “Rainy Days and Facebook” by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge Day 14 

 

“Case of the Mondays. Write about something that
gets you down, burns you out, or makes you sad.
Purge it in a blog post. Turn it around at the end
and tell Tuesday why you’re ready for it”

This is easy. Facebook. I recently decided that I’m leaving FB by the end of the year. I’d leave sooner, but I have five pages and I’m not exactly sure what to do, so I’ve been reading up on how to leave. Apparently, there are 13 steps. 

It’s like divorce, or dissolving a partnership or union. There are lots of loose ends to clear up. It’s not an easy decision, not one I take lightly, nor is it one that I’m making as a knee-jerk response to certain events, though those events certainly were the last proverbial straw. 

As I stated in an earlier post, I went to FB as a way to get support and subsequently started lending support. So much so, that I came up with the idea to start a financial resource page for traumatic brain injury with my friend Trina Chambers-Bradlee, who  I found FB. The idea came as a result of my own need for it, but I myself never did get to utilize anything on the page because I’ve been too busy and overwhelmed with helping others, on and offline. So, that clearly is an indication that I’m giving out more than I’m taking in. 

As a full-time disabled caregiver for my mother, I have a great need for offline support. The fact that I have in reality, so little, is the reason why I’m so exhausted all the time. It’s been through this exhaustion, while lying in bed, like right now, when I’m unable to sleep, that I find myself writing, reading or as has been so often the case; online helping someone. 

But it hasn’t been returned online in social media so that I can continue providing that kind of support. It’s unreasonable and unkind for others to think that I’m an inexhaustible resource. I’m not. I need help too. And yet, when I’ve asked, even from those who are online professing to be a source for help, I’ve received very little. Unless you want to count the helpful link to their program, product or book I should buy to help me, which maybe wonderful, it just hasn’t been there. It’s probably a helpful thing, but it’s just another responsibility I can’t handle, so I just save it for later. I’m already doing a neuroplasticity program, reading a book and taking supplements. That’s my limit. 

The thing is, I’ve spent a lot of time thinking about this. I’ve weighed the pros and cons. I’ve read countless articles on FB and how it makes people feel. I have to say, it doesn’t make me feel good anymore. I don’t really know if it ever did.

Don’t get me wrong, there’s good on FB. You just have to navigate through the bad to get there. I’m choosing not to anymore. I think FB was becoming a crutch for me. I don’t need another one of those. I have a real one that I bought for $150.00. I’d like to be rid of that one too. 

There’s a world on and offline outside FB. In terms of helping others, I’d say the chances of doing that on a personal physical level overshadow sitting over a device and tapping away with my finger. So I’m off to explore those avenues. 

I’m looking forward to less stress, less ignorance and rude behavior. I’m looking forward to growing and maturing as a person, widening my horizons, having more peace. I want to be a better person. A happier person, one with more skills and abilities than before my TBI. The only way to get that, I feel, is to be more present in my present life. 

I don’t think I’ll accomplish that as long as I’m lollygagging on FB, chatting away and scrolling mindlessly, which I’m sorry to say, I started doing as a way to relieve stress. It did not do that. It just created more. 

I think the other part of this is that I don’t like the feeling of being addicted or in a habit of checking my phone every few minutes to see if someone responded to a something I said. It’s led to a lot of unnecessary conversations. Some I regret. Nevertheless, there was good that came out of it. There were good times. I met some good people. So, I’m definitely a stronger person as I walk away. 

In closing, I’d like to thank all the people I have met along the way, some dear, some who moved me, some who I moved. I’d even like to thank all the people who disliked me, because I grew with every interaction. 

I also apologize for anything I said or did as I healed and recovered from my TBI because I basically learned on FB how to socialize again after my TBI. Healing in front of the world was either gutsy or stupid. Sometimes I messed up royally. 

I’ll miss the support groups most of all. The support groups were real lifesavers. 

And I’ll miss the health professionals and businesses. But they have also have websites.

So goodbye, FB and goodbye FB friends. You haven’t really lost me. I’m still here. I’ll always be just a blog post away.  

#HAWMC The White Chocolate Swan by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge Day 13 

 “What’s the best thing that happened to you this week? Maybe you got great news or maybe ice cream was on sale- write about it and relive it!”
She was a raven-haired beauty from Brazil. So young, sweet and shy that her eyes sparkled when she smiled, which was pretty much always. A new bride, to a handsome gregarious Brazilian man who was just starting his career as a computer specialist for a corporation in America. 

        ❤️❤️        ❤️❤️      ❤️❤️     ❤️❤️       

The day he walked into our little congregation there was a flurry of excitement for we hadn’t had visitors from Brazil before. Turns out, he had just rented an apartment closeby. He was awaiting the arrival of his new bride. She had stayed behind because she needed extra time to say goodbye to her friends and family. She’d never been to the United States before and while his English was perfect, she was just learning, so she finished her elementary English class as well. We all entertained him, fed him until he burst, helped him with some immediate furnishings, and prepared for his wife’s arrival.

 It was exciting times for our congregation in the 1980’s. Back then, computers were a new and fascinating addition to the home office and workplace. He had much to say about being a computer programmer. We were amazed at all the technical talk. 

Still, he pined for his new bride. So the day she arrived, a large group of us accompanied him out to the airport. We made a big banner that read, “Welcome To Your New Home, Lina!” Izzy was like a little boy. He was grinning from ear to ear, running from one place to another, checking the gates, clutching a big bouquet of red roses and a box of chocolates. Our large group of mostly women, had balloons with colorful streamers and gift bags of goodies. 

” There she is! There she is!” He shouted, jumping up and down as he waved the red roses back and forth in the air. 

” Lina! Lina! Lina!” He was almost giggling and made no attempt to control his excitement. As soon as he could, he ran to meet her. 

We stood there, behind the rope, hooping and hollering as he grabbed her and hugged her. She dropped her bags and embraced him, wrapping her arms around his neck and burying her head in his shoulders. He lifted her up, swung her around a few times and as her feet left the floor, the combs in her long black hair fell to the ground. Finally, he set her down. Pulling her back slightly, dipping her back, he kissed her for what seemed like a very, long, time. 

At this point, the airline employees at the gate, other passengers and passersby had all stopped and joined in clapping. Whistles, cheers and shouts of joy where coming from the crowd as Izzy and Lina enjoyed their reunion in front of gate 9. 

Lina was overjoyed to say the least, but when she finally realized that the banner and the crowd were for her, she got a little embarrassed. You see, she had no idea we had also been waiting for her. 

We all introduced ourselves, filled her arms with gifts and took pictures. I was taking pictures the whole time. Being the romantic that I was, I remember having a lot to do with this celebration at the airport. Years of sitting at home watching old movies in technicolor with scenes just like this one, was the reason that I tried to recreate them in real life any chance I got. On this occasion, it worked out just as I dreamed it would.

We dropped them off at their apartment where, there too, we women had prepared a little love nest the way we would have liked. It brought such joy and happiness to prepare for a new bride. There wasn’t much there, because Izzy insisted that Lina should furnish the apartment, but what was there, was enough. It was just a plain, no-frills apartment, but to Lina, it was beautiful. This was the place that she was going to start her new life with the husband she adored. 

Izzy gave us the look that it was time to leave, so we did. Those must have ten agonizing minutes for him! 

This was not the end to my planning however, because in the works was a bridal shower. Again, we woman, with big smiling faces, giggles and exuberance got together and planned a menu. We had learned from Izzy that their wedding had been small and the gifts were mostly cash. They had never had a wedding shower. He immediately loved the idea, but insisted on being there. We tried to explain that it was our custom to have only women at wedding showers. He explained that she didn’t understand English very well yet, so he would have to be the interpreter. So, we decided rather than make  them feel uncomfortable, we would invite the whole congregation. This was a new idea. It took the men by surprise and the only reason they agreed was because of Izzy. He was an infectious kind of fellow. Everyone liked him immensely. They didn’t want to do anything to make him feel uncomfortable, so they agreed. 

It was held at the apartment clubhouse. Another surprise for Lina. We made the most delicious food. I have to say, that we had some of the best cooks and bakers around town. We had the big-bellied husbands to prove it too! 

Of course, there was a cake. We had the loving couple cut it in American wedding style fashion. Izzy loved everything, but Lina was understandably confused and overwhelmed at times. She did enjoy opening the presents though. We all got a surprise when the music started. Lina and Izzy entertained us with some fine dancing, Brazilian style. 

Of course, we also had shower favors. One of our congregation members, Marsha, made little boxes out of white chocolate. They were in the shape of swans. Inside was more chocolate. She worked for weeks making them. They sat, on a table by the door. Little white boxes wrapped in green tissue paper. I didn’t eat mine. I took it home and put in my refrigerator. 

Today, Lina and Izzy are still happily married. He still works for that computer company.  After a few years, they moved a little farther north and I haven’t seen them in decades. Lina speaks perfect English now, of course. I wonder if they remember those days or even me, for that matter. But I remember. 

I remember because those were happy days. Compared to now, those were simplistic times. 

I also remember Marsha. Marsha was as sweet as her chocolate confection. Full of joy and positivity. ” Don’t worry. It will work out,” she’d say. Everyone loved Marsha. We all cried when she got breast cancer. She battled it for years, always with such grace, often consoling us. ” Don’t worry, ” she’d say. ” If it happens, it happens. I have faith in God’s Promise.” 

Marsha passed away a long time ago, but I still have the white chocolate swan she made. I used to keep it in the back of the crisper, because it made me sad. But this weekend, as I was giving the inside of the refrigerator a good cleaning, I took it out. I opened up the box and unwrapped the little swan. It still smelled good. 

However, there was something different about it this time. This time, I didn’t cry. It wasn’t painful. Like the smell of the chocolate, the memory was sweet. 

I sat down with a cup of coffee and thought about those days. Sweet days with Marsha. I reflected on my own “worrisome mammogram” this year. ” Don’t worry, ” I said to myself, ” It will all work out.” I put the precious, delicate swan with the rose made of ribbon at the neck, back into its little white box with the see through window. 

I opened the refrigerator door to put it back in the place it’s been all these years. But then I hesitated. Instead, I put in the butter compartment on the door so I could see it everyday. I now want to be reminded of Marsha and those days when I was young and did those kinds of things. 

I’m sure this is this last little white chocolate swan left from that day. I’m sure that when she made them, she intended for them to eaten and enjoyed. Marsha was that way. 

But, I’m glad that I kept mine. 

 

#HAWMC A Letter To My Best Healthcare Provider by Janice Tindle

The WEGOHEALTH Activist 30/Day Writing Challenge Day 12

“Time to get real.Write a letter to the best or worst
healthcare professional you’ve seen. Don’t hold back!” 

Dear Sue, 

When I looked at this Writing Challenge, my first thought was to slam one of the doctors that treated me so badly because he was so absolutely unprofessional and irresponsible. He rolled his eyes, threw up his hands, wrote I was “suicidal. ” He actually walked out of the room and said, ” I can’t help you.” We were right next to a hospital with a mental ward. If I was what he said, why didn’t he put me there? Well, thank God he was such a completely ignorant jerk, because I had undiagnosed dystonia and a brain injury. I could have literally walked out of his office onto a bridge and jumped off, but I wasn’t actually suicidal. It was a combination migraine, dystonic storm, vertigo, anxiety/panic attack. Brutal. I was suffering from an inner ear disorder affecting my balance and having a dystonic storm. The migraine and vertigo followed after a ride on a bridge in the bright sunlight and then into a circular inside parking garage. Sensory overload. All he said was, in regard to my car accident, ” You should be better my now.” But, God was watching. I’m still here fighting. So who cares about that jerk. 

Let’s talk about you.

I meet you over 25 years ago. Yes, we’re coming up to 30 yrs and I expect us to be friends forever. 

You’re far from perfect, but you’re the most caring, long-suffering, empathic, loving, sympathetic, compassionate, warm and heartfelt person that I have ever known. 

Do you know everything? No. But you are open to learning and that’s what makes you able to have helped so many. 

I know how much you have helped me with some very serious infections over the years, and in fact, I can’t even remember the last time I had an antibiotic. You always seem to know the best supplement to take for what ails me. 

The thing I appreciate the most however, is that, for the most part, you taught me how to take care of myself. You support my writing, you tell me when I need adjusting. You taught me how to heal myself using God’s laws and principles, not man-made fads.  

Unfortunately, for both of us, we got into some serious accidents and so we had to deal with for the first time in our own  lives, things that just couldn’t be fixed. I had to suffer the consequences of that you weren’t able to be there for me, but because of what I learned from you, I was able survive. 

You helped me deal with that too. We mourned together, we’ve gone though caring for our fathers together, and now we are caring for our mothers together. It has caused yet another sacrifice and I’ve been relinquished for quite some time to just a quick email from you. ( Although that recent phone call was beautiful.) That’s because you have other clients, hundreds, maybe thousands, I don’t know, who request your attention everyday. 

That’s why I’m not giving your name out because you just can’t help anyone else right now. 

There are many wonderful people in the holistic field who are helping people and getting them better from their illnesses. I follow and really like quite a few. Some are like you, in that, they truly have good goals. You don’t charge your clients like some famous ones do, so you don’t live large and have a staff. That’s because most if your time is spent doing what you feel God wants you to do, which is give people the answer on how to achieve perfect health forever by concentrating on their spiritual health first. That’s what makes you a balanced person and a wonderful healer. 

So, I just wanted to thank you publicly for saving my life more than once, being my very best friend always and forever, and acknowledging you because I know that you’ve been though a lot and your faith, endurance and integrity has been an inspiration and has kept me from falling completely apart more than once. 

I love you immensely. I thank you from the bottom of my heart for teaching me how to help myself and others.  Mostly, thank you for teaching me how to be a teacher too. 

With Gratitude and Admiration, 

Your Friend, 

Janice

Dear Yahoo, This may sound silly, but…by Janice Tindle

The WEGOHEALTH Activist 30-Day Writing Challenge Day Day  10

“Yahoo Answers Post – Pretend you are writing a
question about your condition – it can be as silly or
humorous as you want. Now answer it.
(Remember: Your answer can be just as silly)”

Dear Yahoo, 

This may sound silly but, ever since I hit my head and hurt my neck, I see static, you know, like how those old black & white TVs used to look when nothing was on? What’s happening and what can do about it? I also see all kinds of lights, flashes, moving fuzzies and jaggy lines. My vision also jumps around a lot and is often blurry and wavy. I also have Dystonia. Help please. 

Signed, VaselineVision
Dear VaselineVision, 

Nobusinessanswering: Wow? Are you sure? Have you tried cleaning your glasses or rinsing out your eyes with saline? 

VaselineVision: Yes. Still there. 

Hummm, dunno know then. Maybe you need a new eye exam. 

VaselineVision: Had one.

Nobusinessanswering: Well, have you tried seeing a psychiatrist? 

VaselineVision: No. Why? 

Nobusinessanswering: Because it sounds psychological. 

VaselineVision: Really? I wasn’t thinking that, but I’ll give it a try thanks. 

Voiceofreason: Hold in there, VaselineVision, you’re not crazy, your problem is not psychological, it’s neurological. You have several things going on here. One is a condition called visual snow. You can read about it here.  
http://www.eyeonvision.org/visual-snow.html

The second part of your problem is migraine. You maybe experiencing several kinds, this is one. http://www.allaboutvision.com/conditions/ocular-migraine.htm

The third part is inflammation and muscle tension due to your brain and neck injury. http://www.braininjuries.org/

http://www.livestrong.com/article/5445-need-blurred-vision-neck-pain/

And lastly, the fourth part is actually your dystonia. It’s quite common for people with dystonia to get migraines. https://migraine.com/blog/migraine-triggers-and-comorbidities-dystonia/

VaslineVision: Thanks Voiceofreason! I’ll look these things up and then make an appointment with a migraine specialist and go from there! 

Voiceofreason: You’re welcome. I’m so sorry you have to endure this, but remember, you’re not crazy. You’re dealing with a lot issues and it’s going to take patience and lots of management. If you need to see a therapist dealing with the difficulties of seeing with so much trouble, please do so. You’re dealing with things that have no cure, so it’s okay to get emotional support. 

VaselineVision 👍🏻

#HAWMC “My Ideal Day” by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge Day 8

“Happy Hump Day! No denying life can get hectic,
but let’s take a mid-week break to fantasize our
ideal day! Would you go somewhere? Who would
you spend it with? Have you had this day? If not –
how could you make it happen?”

Okay, this is a hard one, and I don’t know how many people will be reading my post  after the US Presidential election, but, my ideal day would be to sit all day and eat delicious goodies and not gain any weight or get sick from the sugar. 

Just kidding. 

My ideal day would be if my mother had not developed a multiple heart condition and had to go through the difficult ordeal that it has brought her. It has been so stressful and heartbreaking to experience the trials of her life-changing experience that has affected her, her family, her friends and a whole peripheral group of people. 

You see, if I could really change that, I’d have to change my great-auntie’s congestive heart failure that lead to her death that broke my mother’s heart. My mother was her caregiver and they lived side-by-side for fifteen years. She declined at age 94 and my mother was unable to come to terms with it. She was also unable to relinquish control as a caregiver and as such, worked her 80+ body into exhaustion. The day my great Sophie died, my mother was beyond exhausted. As the days went on, her grief magnified and she ended up in the ER. That was a turning point and I knew that my mother was in trouble. However, I seemed to be the only one that understood what she needed. She needed “the ideal day.” To go on holiday, to go off and rest. But she would not go. She had to “get all the affairs in order.” She had clear her desk. The thing is, though, the heart won’t wait. The heart wants, what the heart wants. I tried to provide a safe, quiet, peaceful place in my home for her to recover. But people just could not come up to speed and understand the seriousness of my mother’s condition. So my ideal day would be for everyone to listen to their heart and act accordingly.  I ask this because you only get one original heart. When it breaks, either figuratively or literally, it reverberates out to all the other hearts connected to it. Everything we do, affects the lives of those we love or don’t love. It affects people we don’t know. It also affects an entire medical profession, community and healthcare system and insurance industry. Heart disease is the number one killer of woman. Maybe it’s because we haven’t got the message that as caregivers, (and the majority of caregivers are woman), we aren’t putting ourselves first. We neglect our own health because we think that our families are more important than us, but the truth is, without us, our families fall apart. Because woman are the nucleus of the family. Everything else orbits around them. So my ideal day would be the day everyone realizes this and we start expecting even indoctrinating the teaching that “Mother”or “Woman”  is not to be idolized, or honored on a special day, but to be treated everyday as the precious treasure that she is by not allowing her to neglect her health. Because her health, is our health. Her pain and sorrow, is our pain and sorrow. Her love and devotion is her gift to us so let’s not be ungrateful. Let’s honor our mother by being peaceful toward her, being respectful and kind, being obedient and loving and most of all, giving her the love and appreciation she deserves so she can reach her full potential and have a long, happy, full and satisfied life. 

That would be my ideal day. I can not accomplish that alone. You have to do with me. Becoming a supporter of your mother’s health is the best gift you can ever give her. This is gift that keeps on giving because you are giving it also to  yourself, those who love her, and preserving her for as long as possible for the benefit of everyone. Mothers, woman, are a gift from God. They are necessary for the happiness in life. So please give me my ideal day by becoming your mother’s health support. The whole world will benefit. 

Thank you in advance! ❤️️

#HAWAC “I think I can…I think I can…Getting in touch with my inner Little Engine.” by Janice Tindle

The WEGOHEALTH Activist 30-Day Writing Challenge Day 8

 ”

Little Engine Post. Write a list post with 10-15 lines
that start each with “I think I can…” Write 5 lines at
the end that start with “I know I can.” They can be
big goals or something that’s been on your to-do
list for the last few weeks- it’s all up to you.”

I think…

I think I can be healthy again. 

I think I can get my life in order. 

I think I can become vibrant again. 

I think I can open my heart to new people, places and things. 

I think I can make my world beautiful. 

I think I can love myself and others better. 

I think I can serve God more fully. 

I think I can learn to be happy in spite of what I’ve lost. 

I think I can learn to relax and let my hair down. 

I think I can stop grieving. 

I know….

I know my life is important and vital to those I love and care for. 

I know I can create beautiful things. 

I know I underneath the mask of pain is a delightful, funny, talented and caring person who just wants to be at peace.  

I know I’m a warrior and that I’ll never give up. 

I know God hears my prayers and so I wait on Him and His Promise. 

HAWMC “Why I became an advocate for brain injury and dystonia.” By Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge Day 7

“Was starting your advocacy journey a hard
decision? Were you anxious and hesitant or were
you excited and ready to share your story? Tell us
how you chose to start advocating for your
condition.”

In 2010, after I was diagnosed with a traumatic brain injury, I had in-home rehabilitation. The therapist that came to the house got me on the computer and helped me get set up on Facebook. She said that getting into online support groups was going to help me get connected to other TBI survivors and help in my healing process. I went into them thinking that I would find a “how to” recover from brain injury, but that was not the case. In fact, I found a lot of people in pain, looking for answers and help. I immediately thought that was unacceptable but I was too much in need myself to do anything about it. So I read, and read and read. Sometimes the same page over and over because I didn’t understand or remember it, but I got it eventually. 

I would share my story with anyone who would listen. When I saw that my options were limited and my recovery was slow, I started advocating in an attempt to facilitate things.  I was terrible at it when I first started because I suffered from panic and anxiety attacks due to the inflammatory response going on in my brain. Migraine and vertigo were always present. I was also dealing with sensory overload, sensitivity to light, sound, with visual and physical movement. So, it was years and years of online education and physical therapy that eventually morphed into advocacy just because I needed to explain my condition and my frustration about the lack of services available, patient education, therapy and counseling. 

When I was diagnosed with dystonia, four years later, I wasn’t eager to accept the “no treatment, no cure” information. I began looking for “cures and treatments.” I started writing about my experience and others experiences with dystonia. I became very passionate about awareness because I had never heard of dystonia and most people I met hadn’t either, including the doctors that I had been going to for help. That was ridiculous to me because the ignorance was causing misdiagnoses and unnecessary suffering. I didn’t want someone else to go through what I was going through, so I tried to join in the  awareness campaign. 

However, I soon found out that there was to be no “cure” for me. I had to face that reality. I then turned my attention to coping, grieving, self-care and maintenance. It is a daily struggle. I’m still learning how to deal the dystonia diagnosis. 

If you have dystonia, you really have no choice but to advocate for yourself. Very strong medications with side effects, that need monitoring and adjustments, or deep brain stimulation surgery are the two choices that the medical professionals offer. It’s up to the patient to look at what fellow sufferers are doing to relieve their symptoms and then talk with the doctors about it. Staying up on what’s going on is vital to keeping a positive attitude. It also feeds your hope and faith that you will be able make a quality life for yourself. In this process, comes awareness by way of involvement with support groups and the organizations around the globe that are dedicated to finding a cure for dystonia. 

Last year, the Micheal J.Fox Foundation for Parkinson’s Disease joined with the Bachman-Strauss Foundation for Dystonia. Together they are working to find a cure. https://youtu.be/QUrMCUQzc_M That’s exciting.

 Micheal J. Fox has both Parkinson’s and Dystonia. He gets facial spasms like me. That knowledge is very helpful and I use it to educate people when I have facial spasms in public. Somehow, their knowing that what I’m experiencing is what Micheal J. Fox experiences, makes my facial spasms have validity. They tend to feel more compassion for me instead judging this odd situation with ignorance. That’s what promoting awareness is all about. It creates education and interest instead of fear and avoidance with something that looks so strange and scary. 

Once people understand that it’s a neurological disorder, they are then open to discuss it more with you. That doesn’t make dystonia less painful, but it does make people’s reaction to it less of a negative experience. 

That’s pretty cool. 

To learn more about dystonia, please visit DMRF.org 

dystonia.org.uk 

http://www.ninds.nih.gov/disorders/dystonias/org_dystonias.htm

http://www.torticollis.org/

Click to access alan%20worldwide.pdf

For brain injury, please visit the FB page I co-admin with fellow WEGOHEALTH nominatees, Trina-Chambers-Bradlee and Angela Ronson 

The Traumatic Brain Injury Resources Page https://m.facebook.com/Traumatic-Brain-Injury-Resources-608238092646488/

The FB pages I made to as a result of my quest brain health and advocating for invisible disability are: 

https://m.facebook.com/Brain-Tears-849165151864890/

https://m.facebook.com/Pain-Brain-Anti-Inflammatory-Foods-884868631551718/

https://m.facebook.com/The-Invisible-Wheelchair-Disability-Education-Page-1599733076911002/

You can find my writing page at: 

https://m.facebook.com/janicetindlewriter/

HAWMC Day 6 “Wonder Woman” by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge Day 6 

“Superpower Sunday! If you had a superpower –
what would it be? How would you use it?”

Janice Tindle 1997 Photo by Daniel Tindle

This is easy. Do you remember the Micheal Keaton movie “Multipilicity?” He wished for multiple versions of himself so he could get everything done and please everyone. It’s hilarious. It seemed like a great wish to have and don’t we all wish we could clone ourselves everyday? 

I’d be preaching about Jesus, gardening, doing office work, writing books, doing artwork and decorating, working out and following a ultra healthy diet, making money, bargain-hunting, organizing and remodeling my house, my life and my mind, going on a holiday, being a stress-free caregiver with staff, and finding a cure for all that ails me. 

“All that ails me.” That’s a list so long it could fill a book. First, I’d like be rid of dystonia, hypothyroidism, Hashimoto’s disease and the effects of brain injury and aging. That would be awesome. To feel fabulous. But then I’d want the same for everyone else. I’d love to have no more pain, sickness or death or any kind. That would be awesome if I could do that. If I could make people, animals and the universe happy and perfectly whole. If I could cause every living thing to wake up every morning feeling peaceful, secure and fulfilled, I’d do it. If I could make love the primary energy of the entire existence of life both in heaven and earth and in all places near and far, I would do it. If I could hear voices of praise from the hills and valleys in the oceans and in the sky, I’d make it happen so that every heart would swell to its fullest measure. If I could create beauty so abundantly clear and exquisite that eyes would tear up, throats would form a lump and lungs would gasp in overwhelming joy, I’d create it. If I could make over every mind so that nothing negative, sad or painful ever entered or stayed, I’d make it so. And if I could give a never-ending faith of everlasting life with boundless possibly and perfect life, I would not take one second longer see that happen. 

But I can not do any of those things. I can only preach about them. I can only hope and pray that people will listen. I can only  pay attention to myself and my household to never lose sight of the fact that in spite of all the craziness in the world God promises that the day He will make all these happen will not be late. ( Hababkuk 2:3) 

And I can do all that I can now to make sure that I am there to see it. To see my love ones come back to life in a resurrection onto that beautiful Mother Earth with all its original glory and splendor. I will run to embrace them with tears of joy and arms open wide with my heart full of unbridled love at the reunion of our lives never to be separated again. We will laugh and dance, build and plant, sing and feast, and sit quietly at the end of each day and look at the glorious constellations and illuminating moon and praise Jah for the rest of eternity. 

jw.org

#HAWMC WEGOHEALTH Activist 30 Day Writing Challenge Day 5 by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge 
“Are you all about 180 characters or less? Do you enjoy shooting the perfect photo? Or perhaps love sharing posts on Facebook.What’s your favorite platform to get your voice heard and why?”

Sometimes less us more. Sometimes more is more. I don’t know which or when. I haven’t found the “secret formula” yet. 

Yes, I do like photography, but I’m limited in what I can do. 

My favorite place? I don’t have one, my blog is on WordPress. You’re reading it right now. I like Twitter. I’m very proud of The Traumatic Brain Injury Resources Page with my dear friend Trina Chambers- Bradlee and co-admin Angela Ronson. We help a lot people on that FB page. I like a lot support groups as well.

I used to have a stronger voice, then I do right now. I’m in the offline world more than I’m online this year because I’m a caregiver for my mother. I guess you could say I’ve switched my focus to advocacy for myself to advocating for another, but I did not get nominated for that this year. 

My favorite place right now at this moment in time is any place that listens to what my mother needs. 

Our recent trip to the Cleveland Clinic was pretty awesome. 

#HAWMC Dear Janice, by Janice Tindle

The WEGOHEALTH Activist 30 Day Writing Challenge Day 4 

“Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.”

Dear  Janice, 

I’m so sorry that you suffered all these years with migraines, neck pain, fatigue, vertigo, vision problems, muscle spasms, tremors, numbness, anxiety and stress. I’m so sorry that had to go from doctor to doctor, having test after test, paying medical bill after medical bill and enduring the anguish of NOT knowing what was wrong with you while being prescribed a plethora of pharmaceuticals that made you fat, sick and tired. I’m so sorry that you had to go through all this while you were trying to start a consultation business that was ahead of it’s time in holistic healing, while being a daily caregiver helper to your mom for your dad and your great aunt for your great uncle as they both faced the end of their lives. I’m also sad that you went through this the year you finally learned to drive. Also as you were checking in and helping in very special ways for your dear friend and neighbor who became paralyzed after falling off a roof. But mostly, I’m sorry that you were misdiagnosed and labeled has a mental patient when in fact, you were, as the neurosurgeon put it “an inch away from being dead or in a wheelchair.” 

All because in 2003, you tripped on a stepping stone outside your house and fell face first into a big flat rock. 

You suffered a brain injury, but no one figured it out. Five days in the hospital, with migraine, pumped up with drugs until you started seeing smurfs and moving pictures on the walls, unable to stand upright, and unfortunately, given Reglan. 

I’m so sorry you went home and shook for three months and your doctor did nothing. I’m sorry that the neurologist that you went to ruined your chances of ever getting good medical care for decades because he labeled you so that no one believed your pain. I’m so sorry it caused you to develop depression, anxiety and a fear of doctors. I’m sorry that he told you, “Janice, there’s nothing structurally wrong with you.” But there was. There truly was. And yet, not until 2008, when you finally went to the ER and refused to leave, did a neurology intern come in, see you with clear eyes for five solid minutes and say, “I know what’s wrong with you. You need an MRI of your neck.” The MRI the big shot neurologist  refused to give you, you finally got. But did he give you the results? No. Not after a day or a week? No. Two weeks you sat in agony, calling everyday until his exasperated nurse finally looked at the MRI report and said, “Oh, there really IS something wrong with you!” Then you were sent to the neurosurgeon who gave you a double spinal fusion, two bone grafts, three screws and a plate. In your body free of metal fillings, to the tune of 10k, you now had a 137k neck surgery , with metal in your neck for the rest of your life. I remember how angry you were at the big shot neurologist who disappeared and how you viewed the good-looking young neurosurgeon as your savior. He was. He saved your life. But you still suffered. Why? Because they didn’t know you also had dystonia. Was it the fall? The Reglan? The neck injury? You didn’t know. And neither did they. But they doubted you.

Then you got a core needle breast biopsy in which they fractured your T4. You couldn’t raise your arms and laid in bed for four months because no one believed you. Your whole left side hurt. It didn’t show in the initial x-ray. But your ever-loving husband washed you, feed you, and took care of everything. 

When the neurosurgeon released you, he said, ” Just don’t get into a car accident.” And in 2010, a man, underinsured and in a hurry, cause a t-bone accident and you suffered a traumatic brain injury, a compound T-1 wedge fracture and chest contusions. You panicked because of what the neurosurgeon said. And when you went to the ER, did they look for a TBI  or believe you? Did they worry that you couldn’t relieve your bladder or that your arms and legs were numb and you were shaking? Nope. The medical record doesn’t even showed you were cathed. They sent you home. 

Five days later, another hospital. They put you in a Miami j collar and gave you very strong pain pills. Five months you laid in the hospital bed in your home. Home health care tried to make you do things you couldn’t do. Horrible pain and migraine. Vision and balance problems. No one told you you had a brain injury. Finally you could take the bouncy vision no more. You braved the long car drive to the eye doctor. Panic attacks came with motion. Diagnosis: Traumatic Brain Injury. Post Concussion Syndrome. More to follow. 

But because the hospital they sent you to still believed that big shot neurologist diagnosis before your neck surgery, you got scepitical doctors. The doctors had written terrible things in your medical records for years and when you finally read it all, you wanted to die. 

You felt you had no place to go because this would always be on your medical record and you would never get good care. So you hated doctors. You feared them. You suffered panic and anxiety when you had to see them because you were suffering from this horrible twisting, excruciating pain that made you shake violently, jerk and pull your neck and body into bizarre and abnormal positions.

At one point you believed that they must be right, you must be doing this on purpose, so you tried with all your might to stop it. Prayer, meditation, You stopped at nothing. Any and all alternative therapy and treatments that made scientific sense. But it always came back. Then, you were diagnosed with a balance disorder. You had inner ear damage. You would be in some sort of therapy for the rest of your life. 

And then there was that gynecologist surgeon who told you that your non-stop bleeding was “probably cancer” and wanted to do a radical hysterectomy in two days. Thank goodness you had the good sense to go elsewhere. When you found out he was a trophy hunter, you weren’t surprised. You knew not to believe him. You did however, catch the pre-cancerous condition in time. In fact, you’ve caught pre-cancer three times. You for you! 

And then you saw a movement disorder specialist. She told you that you had dystonia and parkinsonism. She said it had no cure. “All we can do is try to keep you from getting worse.” 

You cried with relief, sadness, anger and frustration. But you persevere and last year you became your mother’s caregiver. You took her in and dedicated your whole life to her care. And now you’re giving up your home so you can get help in for both of you in a bigger house. 

I know you’re in constant pain, but, I have to tell you how very proud I am of you that in spite of the really crappy way you have been treated and the unspeakable things they wrote and said right to your face in that big deal health care system, you never give up on yourself. And you became an online advocate and activist helping others. You even participated in two TBI studies. One for fatigue and one of fibre imaging to diagnose brain injury. It broke your heart when a big shot doctor in charge turned on you and threw you under the bus because you hoped he’d help you with your lawsuit. He charged you $2,000 to write a letter to your lawyer just to say no and then kicked you out of the study. Then your lawyer died. 

Yes, you never gave up and you never will. Because you are a warrior. A fighter. A really flawed, imperfect one with a lot to learn, but you try. You grow Janice. And someday, you will grow high and strong enough to rise above it all. Someday none of this will matter. I believe someday you won’t have dystonia because Gods Kingdom will “wipe out every tear…and death, sorrow sickness and pain will be no more.” ( Revelation 21:3,4) You will see it. You’ll be there. You’ll be happy well one day. Trust and believe Janice, and don’t you ever give up on yourself because God loves you and I love you. 

Signed, 

Janice on the inside 

#HAWMC WEGOHEALTH Activist Writing Challenge Day 3 by Janice Tindle

The WEGOHEALTH Activist Writing Challenge Day 3 
“Quotation Inspiration. Find a quote that inspires
you (either positively or negatively) and free write
about it for 15 minutes.”

This is easy. ” I never give up.” – Janice Tindle 

For me, giving up just isn’t an option. I posted this on my LinkedIn profile. It’s something that I say to myself daily. Why? Because it’s easy to WANT to give up. Especially when things look hopeless and you may be in a lot of pain. When others give up on you. When you’re told you have an incurable condition. When you’re left behind. When it looks like the whole world has forgotten about you. When you feel that that you are out of options. 

You’re not. And suicide is NEVER an option. When you think suicide IS an option, then that is your brain telling  you that it’s looking for a way out, and because there’s doesn’t seem to be one, it makes one in the form of a suicide thought. That’s a message from your brain to get help and find another way. At least that’s what I think. 

Even though I get depressed, I’m still an optimistic person with a strong spirit. I believe that I don’t know everything and that the people I’m getting advice from don’t know EVERYTHING, no one possibly can, only God knows everything. And He can always make it way out, so, I ask Him to do that for me, and He must, because I’m still here, fighting the good fight. 

It’s okay to rest, regroup, recoil and re-evaluate, but, don’t ever give up. Ever. 

This is how I think, because tomorrow might bring a solution and tomorrow may  give you what you have been waiting for your whole life, so, be patient and wait. 

The comments in this blog are my own thoughts and opinions and as such are not to be taken as medical advice. 

#HAWMC WEGOHEALTH Activist Writing Challenge Day 2 by Janice Tindle

 

The WEGOHEALTH Activist Writing Challenge Day 2 

“Every great writer has their own process! What’s
the blogging process look like for you? Do you set
aside time each week to write or do you wait until
the inspiration hits? Do you finish a post in one
night or use the week to perfect it? Do you edit
your blogs or just hit publish? Whatever it is you
do, it’s unique to you and we want to learn about it.”

I’m definitely an inspirational writer. I get fired up about something or moved by someone and I just have to tell that story. I usually start writing in my head. If it sounds like something I want to say for more than a few minutes, I start writing. It just flows. Sometimes I get hung up and let it sit for a day, a week or even months. However, most of the time it’s a straight shot from start to finish. 

Do I edit? Absolutely! I try to catch my mistakes before I hit publish, but there are times when I miss something and I have to go back and edit. I’ve had to edit older posts for content, or update with new information like a helpful link or photo. 

I look at my blog posts as little pieces of my history that I want remembered or known right now. If I died tomorrow, people would be able to read them and see my journey and know that I really did try to do my best with the situation I was in. “Don’t ever give up. ” That’s my mantra. I hope that people see that and become inspired to carry on. 

#HAWMC ” Why I write.” by Janice Tindle

The WEGOHEALTH Activist Writing Challenge Day 1

“What drives you to
write about your health? What do you want other
Health Activists to know about your condition and
your activism? Reflect on this for 15-20 minutes
without stopping…GO!”

The thing that drives me to write about my conditions ( TBI and it’s never-ending list of life-long problems, like dystonia and vertigo) is to raise awareness and understanding not just in the pubic eye, but in the medical community. People with brain injury just aren’t getting the help they need on a consistent basis. The education in medical training in regards to any kind of  brain injury is pitiful. It’s true, that in recent years, there has been a push for funding, research, diagnostic testing and treatment, but right now, if you go to a ER because you “got hit on the head” well, things haven’t changed much at all. And the truth is, any hit on the head is serious. Personally, I know of a case where a man was in a car accident, hit his head, cracked it open, lost consciousness and had a brain bleed. He had surgery and spent two weeks in the hospital. He was then sent home to recover and did remarkably well. His doctor was amazed at his progress and said he could go back to work. However, he would have to live with three things for the rest of his life; short-term memory loss, migraines and mood changes. “Nothing you can do,” said the doctor. Because he was hit by a young man who was speeding, on drugs, and driving on a suspended license, the insurance settlement was fast and large. 

That was a best case scenario for a brain injury victim turned survivor. But in the years to follow, this 40-something man will continue to be at risk for tragedy. He may be plagued with issues that he and his doctors may never link to that day. The truth is everything about his life until he dies, will be linked to that day, including his increased risk of dementia, AD, divorce, depression, suicide, chronic pain, insomnia, drug dependency and chronic problems such as financial, behavioral, mental, emotional and physical. And it won’t be solely his fault. So don’t judge him. The options and help aren’t being given to brain injury survivors in the places they are going for help. 

A brain injury can be a simple bump that turns deadly, or in the case above, be very scary and turn out amazingly well. For a brain injury. Some brain injuries are  barely noticeable. Others, result in post trauma syndromes. Every brain injury is different. Because every person is different and depending on where you hit your head, your outcome is different. 

Brain injury is a societal problem. It is rooted in the high cost of insurance, health care, crime and homelessness. Until brain injury is looked at as a serious life-changing event, the suffering that it incurs, often in the dark, late at night, behind the bedroom door where the muffled cries of pain and despair are heard only in prayer, people will continue to go undiagnosed, uneducated and unsympathetic to the agony of the injuried brain. 

That is why my fellow WEGOHEALTH Activist nominee Trina Chambers-Bradlee and I created The Traumatic Brain Injury Resources Page on FB. It helps make finding financial resources available to those who are trying to navigate the system. https://m.facebook.com/Traumatic-Brain-Injury-Resources-608238092646488/

The comments in this blog are my own thoughts and opinions and as such are not to be taken as medical advice. 

Dear Lord, Please Grant Me Patience by Janice Tindle

Please grant me patience to deal with my brain,

Because the world goes by like a loud freight train.

Please grant me patience to deal with my heart,

Because I can never seem to finish the projects that I start.

Please grant me patience to deal with my eyes,

Because they are so puffy from those nighttime cries.

Please grant me patience to deal with my hands,

Because they hurt too much and my work just stands.

Please grant me patience to deal with my feet,

Because the walks I loved I cannot complete.

Please grant me patience to deal with my skin,

Because it doesn’t reflect my beauty within.

Please grant me patience to deal with hearing,

Because the requests to repeat things are too overbearing.

Please grant me the patience to deal with my hair,

Because once it was full and now there’s so little of it there.

Please grant me patience to deal with disability,

Because it robs me of peace and mental tranquity.

Please grant me patience to deal with these changes,

Because I now must accept being bathed by strangers.

I thank you my Father for every good day,

So please grant others patience too for what I do and say,

For you are The Most High who gives gifts from above, 

You are my strength, the God that I love.

It’s time to endorse this blog for the WEGO HEALTH Awards!

It’s true, it is an honor to be nominated. Now, is the time to endorse your favorite nominees! I’m so glad that this blog has received a nomination! Thank you very much! I’m humbled and grateful for the acknowledgement. Click on link below and reach my page that looks like this: 

https://awards.wegohealth.com/nominees/12289 You can vote 5 times. Thank you! Please share this post as often as you wish! 😀💚

I’m honored to have been nominated for five WEGOHEALTH Awards! Learn about the awards by reading their blog post here! http://blog.wegohealth.com/2016/08/08/2016-health-activist-awards/

This Blog just received a WEGO Nomination!

This blog was nominated for Best In Show: Blog! Whoo Hoo! It IS an honor to be nominated! Thank you! Here’s the description:

 “Whose blog do you absolutely love? Their writing is exceptional, their “voice” admirable, and their writing is just really worth reading. You believe anyone wondering why patients or caregivers would blog about health should read this Health Activist’s blog – it will make the case crystal clear. They have great info, raise awareness, and do whatever they can to help their community through the use of their blog. They may be active on numerous social platforms – but the blog is their bread and butter – and they are a great model of how to be a blogger.”
💚https://awards.wegohealth.com/?utm_campaign=awards14&utm_medium=social&utm_source=facebook&utm_content=open_graph_share

7 Ways To Support A Loved One With A Traumatic Brain Injury by Janice Tindle

Author’s note: (This article was published on 5 /16/16 on themighty.com. https://themighty.com/2016/05/how-to-support-a-loved-one-with-traumatic-brain-injury/

I am the author of that article, which is now posted here. 

Recently, several spam sites have posted this article without my permission and neglect to credit me as the author. I hunt them down like a southern sheriff and his pack of relentless hounds barking and running half-crazed into the dark night until the criminals scream and plead for mercy. Don’t steal my stuff. I’ll come after you…..)

7 Ways To Support A Loved One With A Traumatic Brain Injury by Janice Tindle 

If someone you love is dealing with a traumatic brain injury (TBI), you may want to offer support, but not know how. As a survivor of TBI, these are my thoughts on how to support a friend or family member going through this difficult experience.

Understanding traumatic brain injury begins by thinking about basic things we take for granted each day. You probably take for granted that when you wake up, you will go to sleep that night as the same person you were when you began your day. You thought the same thoughts, had the same feelings, dreams, goals and abilities as you did the day before. You expect that the next day you will still look at yourself in the mirror and recognize your face, body and voice as yours. You know yourself. Whether or not you like yourself, you have full recognition of your body, mind and spirit. You may not be content or satisfied with who you’ve become, but you understand how you got that way, and you think about what you need to do to change, grow and progress.

Now, imagine waking up one day and within the course of your normal activities, a blow to the head removes all that. Imagine your sense of self disappearing like a document in your computer that you forgot to save. You remember it, mostly, kinda. You search for it; you know it’s there, somewhere, but no matter how hard you search, you just can’t find it. So you try to make a new one, as close to the old one as possible, but all the subtle nuances and specific details are gone. All you can do is try to make copy of the “you” that used to be.

You may feel like an impostor. You may feel like you’re living someone else’s life, but it’s your life. You’re lonely for yourself. You feel lost.

Things that were so important before may have no meaning. Relationships that you once treasured can be difficult to connect with. You understand the meaning of the lyrics in Gordon Lightfoot’s song, “If You Could Read My Mind” because you walk around like a ghost in your own life “with chains around your feet,” agonizing because “the feeling’s gone and you just can’t get it back.”

Picture yourself getting into your car that only you drive, and suddenly, the seat is in the wrong position. You try the adjust it back to where you’ve always had it, but your most comfortable setting is gone. The steering wheel won’t tilt into place, and the HVAC system no longer has your temperature of choice. The radio has been reprogrammed without any station you recognize. The wipers stick and squeak. The defrost only works on one side of the window. The gas tank is on the other side. You try to drive it anyway, but no matter how hard you try, you just can’t get the speed up. You can’t see, your back hurts, it’s too cold/hot, the music is too loud, the wipers are driving you crazy, and you are so frustrated by everyone honking at you that you just pull over, put your head in your hands and cry.

Now imagine that car is your brain.
 That’s TBI. 
So here are the

7 Ways to Support a Loved One With Traumatic Brain Injury

1. Believe them. The pain is real. The fatigue is real. The confusion and mood changes aren’t their fault. It’s an injury. Treat it that way. Talk about depression and suicidal thoughts and feelings. I started a Facebook page that contains articles about TBI depression and other mental health issues.
2. Rehabilitation is vital. And it’s not all the same. Get your loved one into the best program you can find as soon as possible. If you’re in the USA, the Brain Injury Association of America has many resources on their website. It’s easy to get overwhelmed. Have your friends and family look for resources and do research for you. My friend Trina Chambers-Bradlee and I started a page to help others find financial help because I had a difficult time finding resources.
3. Not all concussion doctors are equal. Regardless of their status in the medical community, if you feel that the care is unsatisfactory for your situation, find another doctor.
4. An anti-inflammatory diet may be crucial. Fish oil shows evidence of being extremely helpful after brain injury. J.J. Virgin wrote a an e-book about her son’s recovery called “Walking Hope” in which she outlines how they used fish oil in his care. There are many functional medicine doctors and books online with more information about diet.
5. Join support groups. Whether they are in your rehabilitation center, online or at the hospital, support groups are vital to understanding TBI. Don’t try to get through this alone. Support groups will help you deal with all the things that the doctor doesn’t know or doesn’t have time to tell you.
6. Don’t give up. The more tools you put in your toolbox, the better you’ll be able to handle what’s happened. The more help you get for yourself, the more you’ll be able to help your loved one.
7. This is a life-changing event. However, there is life after TBI. The more you understand that you now have to put in extra effort for your loved one, the more enrichment you’ll both receive. Learning about TBI and experiencing it is like learning a new language for both of you. Think of yourselves as if you have suddenly been thrust into a new, strange country. The more you learn and adapt, the more opportunities you’ll have to rebuild a successful life together.

Additional Note: 

The first half of this article appeared with my permission in the June issue of TBI Hope and Inspiration magazine. David A. Grant, the Editor of the magazine said on his FB page, dated June 20, “We’ve just published the June 2016 Issue of TBI HOPE Magazine! Many of the articles in this month’s issue speak of the importance of Support Groups as an important part of ongoing TBI recovery. We are pleased as well to welcome several first-time contributors to our family of contributing writers. Download the June Issue Here>>> http://tbihopeandinspiration.com/June2016.pdf

Don’t miss,”What People Don’t Understand,” by contributing writer Janice Tindle. This is perhaps one of the best pieces that we’ve ever published about what it’s really like to live daily with a traumatic brain injury.” http://tbihopeandinspiration.com/June2016.pdf

I also gave my permission for Annie Ricketts, founder of the big global picnic, to post it on her website. You’ll find it under “A Guide for Friends and Families – How to Help After a Brain Injury”   http://biglobalpicnic.org/a-guide-for-friends-and-families-how-to-help-after-a-brain-injury/

Before being posted here, it was viewed over 12 thousand times from my pages on Facebook. It’s been shared around the world. I’m very proud to be  raising awareness and helping people in this way. 💚 https://www.facebook.com/janicetindlewriter/

photo by Daniel Tindle

Galicia’s Granite by Janice Tindle

This just won the 1pg short story contest and was performed at the Novel Writing Festival.  I’m so happy to have been selected! You can watch it being beautifully read by Val Cole at https://novelwritingfestival.com/2016/07/05/galicias-granite-short-story-reading-by-janice-tindle/

Galicia’s Granite by Janice Tindle

photo by Janice Tindle

It was the first time she had ever had brand new furniture. A gift from her cousin and cousin-in-law. A beautiful maple dresser with a large mirror and nightstand. The mirror reflected the light as it came into the room through the window with the paisley drapes and sheer white curtains. It was a far cry from the stark room of the family farm in Poland. 

The passage by ship had been horrible, but seeing the Statute of Liberty and walking through Ellis Island was the greatest day of her life. She was home. Home to stay. That night, she put her Bible on the nightstand, turned out the light and thanked God for all her blessings. She offered thanks for her escape from Poland before the Nazi soldiers seized her family home. 

At just fifteen years old, it had been difficult to leave her family behind, but, staying under the threat of war and death or even torture was more terrifying. Even the lice, dysentery and hunger on the ship was more agreeable than the idea of coming face-to-face with a Nazi beast. And her parents most certainly knew what would become of her if she stayed. Her skin was sun-bronzed. Her hair shone like melted chocolate. Her eyes sparkled like blue topaz and when she spoke, she put everyone into a sweet, sweet fantasy that only she could create. Yes, her parents knew that the first soldier who saw her would take her away, so they made the ultimate sacrifice and sent her away from their own eyes, but never from their hearts. 
After she said “Amen.” she whispered her new American name, “Lucy.” She crinkled her nose. She didn’t feel like a “Lucy.” Ludwicka was the her name. Sometimes her parents called her “Luddy” for short, but since she could not speak, read nor write in English and the man at Ellis Island couldn’t pronounce nor spell “Ludwicka, he declared her “Lucy” and that was that. At least here, under this roof, she would be who she was always, in name and in spirit. 
Her new job as a housemaid came with a handsome landowner. A farmer’s daughter was familiar with hard work. Her beauty would do the rest. She was in.
No complaining, ever. Momma said. Becoming the mistress of the manner was all but done.

Galicia’s Granite Short Story Reading by Janice Tindle

Galicia’s Granite Short Story Reading by Janice Tindle

Ah, To Sing….To Dream. by Janice Tindle

Encore post 

A Singer’s Lament /Written by Janice Tindle

I miss singing. When I was growing up, my mother, a professional soloist, would play arias and the standards. My grandfather, a gregarious Italian who lived next door, would play opera, jazz, blues, swing, big band and all the crooners. My music was rock and pop. So I was exposed to a lot of different venues. I learned to love them all for what they brought into my soul. Watching my grandfather cry listening to Caruso and dancing to Benny Goodman was the window to his soul. Listening to my mother’s lilt and phrasing gave me a rich education on what a singer can do. A singer has the power to evoke emotion inside another’s heart while fulfilling their own desire to create a venue for their own passion, life experience and freedom of expression. The voice is the perfect instrument. You can take it with you wherever you go. With singing and only your heart to guide you, there is no end to the possibilities.
 I knew I wanted to be a song stylist. I loved the way the words swirled around in my mouth. I loved to form the notes “up into the mask”, and feel them resonate in my face. I got high on the rise and fall of breathing through a song, feeling it swell inside my soul so that I could hardly contain my joy.
To sing a song for the first time is like riding a rollercoaster, you don’t know how it is going to thrill you until the end and the rush is incredible. To sing an old favorite is like holding an old friend, warm, safe and easy. It didn’t matter if it was on the stage or home alone, singing was my passion, my constant companion, my teller of tales, my heart’s desire, my fantasy and reality. Singing was ME thoroughly and completely, ME. I sang when I showered, I sang when I cooked, I sang when I gardened and sang when I sewed. When I walked, I sang to myself. Before I went to sleep at night, I sang in my head. I couldn’t imagine my life without it. But there is no greater feeling than to sing to God. I think that is the most special, when the tears would form and the satisfaction was complete. To feel the closeness and love in spiritual singing is like no other. And you don’t have to be a good singer to praise God. But, I miss MY voice. It makes me tear up to say that because it was so much of who I was, who I still long to be.
I think of Julie Andrews, who lost her voice to a botched throat surgery, and Linda Ronstadt who lost hers to Parkinson’s. And for most singer’s, there comes a time when you feel yourself “start to slip”. I remember Beverly Sills retiring while she still sounded magnificent. But I still had a lot of singing left to do. Three years ago, after a traumatic brain injury, I lost my ability to sing with any substance.
Even though I still try every day, the voice is not what it was, because I am not what I was. And personality is so much of what a singer is or is not. The “colors” in my voice are gone. The notes are less than ordinary. The soul of my singing is absent. And so is that wonderful release of thrilling joyousness.
So much of singing involves your whole being. You use every part of yourself. Mostly, a song is born in your brain. Right now, I can not conceive a single note that is not disabled in some way. Where there once was a fire, there is now only gray ash. 
But sometimes in the ashes an ember still burns.
 I will keep trying. No matter how lack lustre it feels. I will never give up. I will never give up. Never.
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The Power Of Life by Janice Tindle

The shadows cross at midnight and I am alone again,

Behind a curtain of umbiguity I wait for  the sunrise.

The treacherous hours where my soul cries while the dewdrops form –

And quench all new life from the parched Earth.

Oh blessed dawn! Oh blessed hope! 

For with you comes the songs of birds that tell my heart to reach as far as they can fly,

To soar as far as they can see, to be until the midnight hour,

Where I wait again for the Power of Life to thrust me into a new day.