#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:

https://janicetindle.com/2016/07/17/7-ways-to-support-a-loved-one-with-a-brain-injury-by-janice-tindle/

Advertisements
Posted in brain injury, caregiving, coping skills, disability, family, human interest, humanity, traumatic brain injury | Tagged , , | Leave a comment

#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. 

Posted in brain injury, caregiving, coping skills, disability, Dystonia, honesty, human interest, humanity, inspirational, Inspiring, life changing, life changing events, love, motivational, musings, people, rare disorder, self, support groups, thought provoking, tindle, traumatic brain injury | Tagged , , | Leave a comment

#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.

Posted in coping skills, disability, Dystonia, Dystonia awareness, honesty, human interest, humanity, jump for Dystonia, rare disorder, self, thought provoking, tindle | Tagged , , | 2 Comments

#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. ❤️

Posted in caregiving, duty, human interest, humanity, inspirational, life changing, motivational, people, spiritual, support groups, thought provoking, traumatic brain injury | Tagged , , , | Leave a comment

#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

Posted in brain injury, Brain injury radio, coping skills, disability, human interest, humanity, Inspiring, life changing, motivational, people, self, spiritual, thought provoking, traumatic brain injury | Tagged , , , | Leave a comment

#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.  

Posted in brain injury, caregiving, coping skills, disability, honesty, human interest, humanity, inspirational, life changing, life changing events, people, self, support groups, thought provoking, tindle, traumatic brain injury | Tagged , , , , | 2 Comments

#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. 

 

Posted in human interest, humanity, inspirational, Inspiring, life changing, love, marriage, motivational, musings, people, religion, self, short story, spiritual, thought provoking, tindle | Tagged , , , | Leave a comment