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TBI Tales . . . . . . . . . . . . . . . . . They Meant Well, But I Knew Better

They Meant Well, But I Knew Better

by

David Figurski

presented by

Donna O’Donnell Figurski

 

David Figurski, PhD Brain Injury Survivor

 

 

Close friends of Donna and me, with whom we have a deep mutual affection, thought I needed some advice on my ongoing recovery from my traumatic brain injury (TBI). I know our friends care about me, so their words were well-meaning – but I have to admit their comments stung quite a bit. I’m sure they didn’t want to upset me. They think they know me, but, in ignoring my nearly compulsive commitment to getting better, they got me totally wrong. They also had no idea that what they thought to be helpful advice was completely unwarranted because it was based on my own deliberately artificial impression. Let me explain.

Our friends’ advice did not come from an ignorance of brain injury, as their daughter had a nearly lethal brain-bleed eight years ago. The daughter and I are both fortunate to have fully retained our cognitive functions, but we both exhibit physical disabilities. Some of her problems are similar to mine. The advice actually began with the daughter describing some positive experiences that led to a lessening of her disabilities – but then the discussion turned into advice for me.

One piece of advice that disturbed me was that our friends and their daughter think I don’t challenge myself enough. I don’t regard myself as a slacker, nor has anyone ever referred to me as one. Here’s where they got me wrong: I always try to do better at whatever I’m doing. In fact, it was my challenging myself that caused my brain hemorrhage in the first place. Every morning, I did tai chi and chin-ups. I had worked up to twelve chin-ups. The next day, my attempt to do thirteen caused my cerebellum to bleed and put me into a coma.

After surviving my TBI fifteen years ago, I continued to push myself as hard as I did before my TBI to improve in the shortest possible time. I currently do exercises to improve my balance, build strength, and help my eye muscles (I see double) six days a week. Three of those days, I also ride my recumbent trike (15 miles each time I ride – about two hours). On two of the non-riding days, I use the treadmill for 45 minutes. (I was riding 25 miles a day and using the treadmill for 60 minutes, but Donna worried I was pushing too hard and talked me down.) By the time I get ready, do my workout, and then shower and get dressed, six or seven hours have elapsed. My normal day begins after 2:00, sometimes after 3:00.

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David exercising on his Catrike recumbent trike (and showing off my book, Prisoners without Bars: A Caregiver’s Tale)

I keep my weight down, and I work constantly to improve my posture because I know that both weight and posture affect balance. Also, to improve my brain’s ability to control my balance, I try not to brace myself with my hands. Even when I appear to be sitting calmly, I’m likely to be working. The brain hemorrhage affected the tendons in my neck, and my head tilts. To keep it straight, I have to work against my tendons. Hopefully, this will get easier, but it will take more years.

Our friends don’t really know any of this about me.

 

David Alinker IMG_4470

David exercising on his Alinker

 

 

When the father assists me outside, he deliberately increases the challenge to me. I do it, and would never say I can’t (My self-esteem has already taken a big hit), but I know I couldn’t maintain that effort indefinitely. (On the other hand, Donna is an incredible help to me. She knows when to assist me to make my life possible and when to challenge me.)

I think the father assumes that I can improve my balance like his daughter did. What he doesn’t realize is that my hemorrhage began in my cerebellum, which controls my balance. So, my brain’s mechanism for controlling balance has been disrupted. His daughter doesn’t have my severe balance problem, so her brain’s mechanism for controlling balance appears to be functioning. Her problem may have been a signaling issue.

It was surprising to hear that kind of advice from the daughter. We are fond of each other, and we have mutual empathy. It’s clear that the differences in our disabilities indicate an obvious fact: that different parts of our brains are affected. Thankfully, she doesn’t have all the problems I have. (For example, her vision is fine, and she is able to drive.) Her balance was affected, but fortunately, she can walk outside, including on grass, dirt, sand, or gravel. In contrast, my balance issue makes it impossible for me to walk unassisted anywhere outside, even on sidewalks because of their slight irregularities.

I am immensely thankful that that the daughter has none of the other problems that I have – double vision (which I mentioned), less feeling in my right leg, a swallow problem, a less coordinated tongue that makes chewing hazardous, a urinary frequency problem, extreme difficulty standing after sitting a while, an ataxic right arm, left hand and fingers that aren’t as good as they used to be, and paralysis on the right side of my face. I used to race cars, but now I can’t drive at all.

The daughter said her balance was improved rapidly by allowing herself to fall and learning the point at which that would happen. I do that when I’m near the bed, where I know I can fall safely. I’m reminded of race drivers who learned the limit of a turn by driving so fast that they would go off the course. That is one strategy for learning, but I chose another: to drive to the point I was scared I wouldn’t keep the car on the track. I learned that, even though it was scary, I was able to drive through the turn faster than I used to. (Incidentally, I was rarely passed by a driver from the other group.) Falling worked for the daughter, but it’s not the only way to improve. I use another, equally effective, method.

My second point illustrates another reason why our friends’ advice was incorrect: What I allow our friends to see does not reflect my life at all. Their error was to assume that it does.

Donna constantly offers to help me, and she doesn’t like to see me struggle. We discussed how I need to do things myself. My efforts take much longer than they did before my TBI, but doing them myself is good for my recovery and my self-esteem. Donna has since achieved a nice balance. She reluctantly lets me struggle and only assists when I ask for help.

At home, I do whatever I can physically, including making the bed every morning, doing the laundry, cleaning up after dinner every night, and loading and unloading the dishwasher. In fact, every movement I make is excellent therapy.

When we visit friends or when we go to parties, people see a very different version of me. I use a cane and take small steps to ensure I walk in a straight line and don’t bump the walls. Our friends would freak out if I they saw me pushing the envelope like I do at home! I let Donna help me or do things for me, not because I want her to wait on me, but because my instability would upset people and make them feel uncomfortable. Our friends are concerned because they constantly see me accepting Donna’s help.

They feel I’m not where I should be. They have erroneously assumed that I don’t work hard enough to improve myself. Their advice, while well-intentioned, is totally wrong. Given that I spend several hours each day working out, given that I believe everything I do is therapy and helps my recovery, and given that I accept Donna’s help to protect our friends from seeing my instability whenever I’m in their presence, “insufficient challenge” is an entirely misguided and utterly inappropriate concept to apply to me.

I would argue that, with all my disabilities, I’m actually doing much better than expected.

David Figurski, Ph.D.           Brain Injury Survivor of 15 years

David & Donna Dec 2019 Lupitas

Donna O’Donnell Figurski and David Figurski – 15 years post-Brain Injury for David

(Photos compliments of contributor.)

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TBI Tales . . . . . . . . . . . . . . . A Friend? The Need for Better Understanding of Brain Injury

A Friend?
The Need for Better Understanding of Brain Injury
by
Alan Gregory

presented
by
Donna O’Donnell Figurski

Alan Gregory 1

Alan Gregory Brain Injury Survivor

 

I was working at my minimum-wage, 3- to 4-hours-per-day job when an old friend came in. He asked why I was working there and not at my former job. (I had been an accountant at a large manufacturing firm – a job I held for more than 30 years.) I told him I lost my job after I suffered a traumatic brain injury (TBI).

Of course, my friend didn’t know what a TBI was, so I explained it to him. He then assumed I must have been in a car accident. But, when I explained to him that I had slipped on ice and landed on my head, he rolled his eyes and moved on.

I wanted to grab him and tell him, “Yes, it’s true, and it totally messed up my life!”clipart-of-person-slipping-on-ice-7

I deal with my brain injury every day. I struggle with the fact that I can no longer financially support my family. Some days, I have to force myself to get up, after I have bounced around the house all night with my head not allowing me to sleep. I used to have a great, salaried job, at which I usually worked ten hours per day. Now, I can barely work a total of ten hours in a week. Ugh!

I honestly wonder what my friend’s reaction would have been if I had told him that I had a heart attack or a stroke or even cancer. I am sure that his reaction would have been sympathetic and understanding with an offer of “If I can do anything …”

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A little understanding and compassion go a long way.

Well, I don’t want his sympathy. We have survived these past two years without his help. A simple dose of understanding would have been preferable, rather than the perplexed look, the sudden turn and walk away, or the “Yeah, right” head shake that we survivors of brain injury all too often get from others.

 

 

Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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TBI Tales . . . . . . . . Mission Possible!

Mission Possible!

by Jennifer Stokley

presented

by

Donna O’Donnell Figurski

 

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I CAN’T BELIEVE I DID IT!

I don’t go out very often since my brain injury – usually only with my big sister or my “gal pal” for support. But, my neighbor had a mission planned. (I have become good friends with my neighbor, and I trust her. Also, we are similar in age.)

Baby Shower

My neighbor’s granddaughter is having a baby, and the baby shower is planned soon. I adore her granddaughter, but I know I just am not up to attending something with fifty people. Most of the guests will be strangers to me. So, that’s where our mission came in.

I told my neighbor that I would pay for all the food she would need for the party and also have her help me pick out healthy food stuff for the baby as my shower gift.

Well, we headed out and had an amazing time! We shopped at two stores I was unfamiliar with, but knowing how much I trusted my neighbor, I didn’t have any anxiety. I only had curiosity and fun running in me.

Grocery Store

I even helped her find two things she couldn’t find anywhere, and I reminded her about something she would need badly for what she is making! (She left her list at home! LOL)

I remembered all of my purchased things and carried them out of my neighbor’s car, but my neighbor noticed I forgot my favorite thing of all. I left my coffee mug in her car! As I was running out to yell to her, she thwas already at my porch and smiling, with my coffee mug in her hand!

Just two years ago, I would have never had the courage to go out with someone I only knew from talking to when she’s hanging out clothes. But today I did it! We also made plans for two more outings …

 

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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TBI Tales . . . . . . . . . . . . . . . Knitting through the Honeymoon

Knitting through the Honeymoon

by Liza Spears

presented

by

Donna O’Donnell Figurski

 

bride-and-groom-clipart-14I’ve been married for almost seven months. Since my wedding, I’ve knit twenty-five hats, five sweaters, three scarves, and one blanket.

I started my first “married life” knitting project on the third day of my honeymoon. It was a ribbed seed stitch hat in my wedding colors–deep reds and purples. I pretended that it was for my husband, even though I knew there was way no he’d wear such a feminine pattern.Liza Spears Wedding Photo

I started the hat over more times than I can count. I didn’t start over because of any mistakes–I hadn’t dropped a stitch or miscounted any rows. The pattern wasn’t complex. I just knew each time I finished that it wasn’t quite right. Every time I got to the last row of the hat, I’d finish as instructed–threading the yarn through the remaining stitches and pulling it tight. Instead of weaving in the ends, though, I’d just completely undo the whole thing and start from the beginning.

I knew how to knit before I got married, but I never trusted myself to do anythingclipart-knitting-DP2n1R-clipart more complex than a simple hat, knit in the round, just knit, purl, knit, purl. I’m happy to say that out of the twenty-five hats I’ve knit since my wedding day, not a single one is that old favorite of mine. Before the wedding, I avoided new patterns because I avoided counting as much as possible. How could an activity be fun if it involved math?

Liza Spears 062418

Liza Spears – Knitter Extraordinaire

It was that third day of my honeymoon and that brand-new hat pattern that taught me how much I needed to count stitches. I learned that if I was counting stitches, I wasn’t counting other things, like the number of the days my husband had been in the ICU (intensive care unit) or the number of nurses that cried when they saw me. If I focused on the 44 stitches I had to cast on to a pair of size 11 needles, I might not notice that his ICP (intracranial pressure) levels* kept creeping up. The number 44 isn’t so scary when it’s just the number of stitches in a row, but when it’s the number flashing on your husband’s monitor next to “ICP” as one of his nurses ushers you out and three doctors rush in, it is scary.

I wasn’t supposed to have time to knit on my honeymoon. I was supposed to be rappelling down waterfalls in the Azores and soaking in thermal baths, but you can’t do that when you wake up in the middle of your wedding night to the sound of your husband falling down the stairs. Going to the bathroom should be easy. It shouldn’t end with your husband lying in pool of his own blood. The first time you use the phrase “my husband” shouldn’t be when calling 911, and as much as you love your bridesmaid, she isn’t the person you should be sharing your bed with. I wasn’t supposed to spend the third day of my honeymoon in the waiting room of the ICU sobbing with my mom, not understanding why my husband wasn’t awake, and what it meant that his nurse had kicked me out.

In the waiting room, I just focused on the ribbing of the hat. Knit 3. Purl 2. Repeat. I was already switching to larger needles to begin the rest of the hat when my husband’s nurse came out and told me I should say goodnight. The pressures in my husband’s brain were just too high for any extra stimulation, even if I just sat next him counting my knits and purls.

The hospital called me at 4 am the next morning to tell me that they were rushing my husband in for an emergency decompressive craniotomy. They could no longer control the rising pressure in his brain with medication alone, so they removed half of his skull.

I realized I’d have to adjust my hat pattern if it was going to fit my husband’s new head, so I started over, knitting and counting the stitches until he woke up.

*Intracranial pressure levels between 7 and 15 are normal. Levels above 20 are dangerous and indicate brain swelling.

To read more posts by Liza Spears, click on Knit Neutrality.

(Disclaimer: The views or opinions in this post are solely that of the author.)

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

 

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(Clip Art compliments of Bing.)

TBI Tales . . . . . . . . . . . . . . . . . . This Song Could Be a Caregiver’s Anthem

This Song Could Be a Caregiver’s Anthem

by

Donna O’Donnell Figurski

David & Donna Aunt Irene's Funeral 060718

 

I happened to hear this old hit song (“Lean on Me”) a couple of days ago. After listening to the lyrics, I realized it reflects what we caregivers do. We just want to help.

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We don’t look this bad.

As the song implies, we give much-needed help. “Lean on Me” could be our anthem. Give it a listen.

PS. I just had to dance with this man to that song and we each did a bit of “leaning on.”

 

(Disclaimer: The views or opinions in this post are solely that of the author.)

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.anim0014-1_e0-1

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(Clip Art compliments of Bing.)

 

TBI Tales . . . . . . . . . . . . . . . . . . TBI to “Victory” . . . . . . . . . . . . . by Daniel Mollino

TBI to “Victory”

by

Daniel Mollino

presented by

Donna O’Donnell Figurski

 

Daniel Mollino – Brain Injury Survivor – Red Bull Athlete

Well, what a year I have had! I watched as all my competitions were abandoned due to blood clots (DVT, deep vein thrombosis: a blood clot that forms in a vein deep in the body), which laid me up for three months. But one race continued to call to me – the Red Bull 400 in Park City. See, I am a cyclist not a runner, but last year I took on the Red Bull 400 in Park City to simply see how I would do, and I completed it. I did no special training outside my usual for cycling. However, the Red Bull 400 in Park City is a whole new world of insanity in racing!

I initially went into this year with the push to try and race all the Red Bull 400s around the globe in a single year. But then medical issues struck.

The Park City race, however, still called for me. My wife wanted to run it. She has never run an event of any kind before, and I needed to get at least one competition in for the year. I was medically cleared a couple of weeks before the race. But I hadn’t done a bit of training of any kind to prepare.

Daniel Mollino -Brain Injury Survivor & Red Bull 400 survivor with spouse, Amby Silex

Nevertheless, I took it on. Now just crossing the starting line is an accomplishment, considering. I honestly hoped I would at least make it to the top somewhat close to the time I had the previous year. Sadly, that did not happen.

I did finish, eventually. My time this year was a little over 39 minutes. (I had to take the steps for the last half.) This is over double the time of last year. Still, I did cross the finish line and have an official time.

We ran and we finished. Last year’s time was much better, but it was a victory nonetheless considering the medical issues I had this year. Onward and upward ….

 

READ MORE about Daniel Mollino and the “Red Bull 400” results here.

 

(Disclaimer: The views or opinions in this post are solely that of the author.)

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

As I say after each post:

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(Clip Art compliments of Bing.)

TBI Tales: . . . . . . . . . . . . . . . . . . . A Messy Kitchen & Fruit Salad

 

A Messy Kitchen
by
Michael Puffer (caregiver for his wife, Maria)
presented by
Donna O’Donnell Figurski

 

Puffer. Michael & Mari a

Maria Puffer – Brain Injury Survivor Michael Puffer – Caregiver for Maria

I came home after a long day and found what looked like a mess in the kitchen. I sat down and put my face in my hands and cried. I couldn’t believe what I came home to. I wasn’t angry, but I couldn’t stop the tears.

Twenty-three months ago, the state of the kitchen would not have been a remarkable finding. Tonight, it was truly unbelievable, and I was blown away!Messy Kitchen

Just under two years ago, I thought I had lost the most important person in my life. My loving wife, Maria Puffer, was in a horrific car accident. She suffered a severe traumatic brain injury and a spinal cord contusion, and she was in a coma at North Memorial Hospital near Minneapolis.

Ever since that day, Maria has fought to show us she is still with us and she is ever-determined to recover and get her life back. Week by week, day by day, hour by hour – she never quits, complains, or feels sorry for herself. Maria practices walking with a walker an hour a day, sometimes nearly falling asleep because she always wants to push herself. She thanks me every night for taking care of her. She shows all of us what true grit and love is.

Fruit_salad_clipartMaria asked me a few days ago where the Kitchen Aid mixer was. I told her it was in the pantry. The next day – there it was on the counter. Maria asked daughter Samantha to pick up the ingredients to make fruit salad. I told her we would make fruit salad over the weekend, but there never was time to do it.

Maria didn’t wait. She made the fruit salad by herself.

My tears were tears of joy and wonder. When she came into the kitchen, I reached out, gave her a huge hug, and said, “You are awesome!” (Maria is absolutely the strongest person I’ll ever know. I can’t believe how lucky I am to be in her life!)Man & Woman Hugging

We had dinner together and enjoyed the very best fruit salad in the world for desert.

I will try forever to be the best husband that I can be. I know I have the best wife, and she deserves the best from me.

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