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.

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Posted in caregiving, Fearless Caregiver, Today's Caregiver, Neurosurgeon Connect, Neuroconnent, Mainline Rehab, human interest, people, religion, thought provoking, traumatic brain injury | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | 5 Comments

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

Posted in brain injury, coping skills, dementia, Dystonia, human interest, inspirational, Inspiring, life changing, life changing events, motivational, self, singing, tindle, traumatic brain injury | Tagged , , , , | 6 Comments

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 💚

Posted in brain injury, coping skills, disability, duty, Dystonia, honesty, human interest, humanity, inspirational, Inspiring, motivational, self, tindle, traumatic brain injury | Tagged , , , | 2 Comments

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. ❤️️

Posted in humanity, traumatic brain injury | 16 Comments

#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. ❤️️

Posted in Brain injury radio, caregiving, coping skills, disability, honesty, hospice, inspirational, Inspiring, motivational, self, thought provoking, tindle | Tagged , , | Leave a comment

#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

Posted in traumatic brain injury | Leave a comment

#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. ) 

Posted in cargiving, coping skills, disability, Dystonia, Dystonia awareness, honesty, human interest, humanity, inspirational, Inspiring, life changing, life changing events, motivational, people, rare disorder, self, thought provoking, tindle, traumatic brain injury | Tagged , , , | 2 Comments