TBI – Survivors, Caregivers, Family, and Friends

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.

IMG_2935

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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Comments on: "TBI Tales . . . . . . . . . . . . . . . . . They Meant Well, But I Knew Better" (7)

  1. Good Morning Y’all. I got busted up in 94, construction accident while building the new ball park in Arlington Texas. I fell in a hole that was not barracaded. the safty guy screwed up , and I will pay for it for the rest of my life. brief med data . 2 brain surgies, stroke, 30 day coma. 30 more days in ICU, 60 days total. went in at 260 came out 120, wheel chair 2 years, walker 2 more. 3 years pt. I have a lot of the same trouble Y’all do. and like you I have to fight every day, then get up and do it again all over. Hang in there it gets better

    Like

    • Scott Fraser,
      Thank you for your comment. Your statement, “I have to fight every day, then get up and do it again all over.” is so true. So many brain injury survivors follow that path every day.

      I like your positive attitude too. You said, “Hang in there it gets better.” Good advice for all survivors.

      donna o’donnell figurski
      Author of “Prisoners without Bars: A Caregiver’s Tale”
      donnafigurski.com
      survivingtraumaticbraininjury.com
      donnaodonnellfigurski.com

      Like

  2. Bob Bolhuis said:

    I asked my Doctor why my TBI was not as severe as others I know . No two brain injuries are the same ! My worst effects are poor short term memory and loss of my sense of smell. ( you don’t realize how much you use it until you lose it ! ) A lot of people relate it to aging . ( it happens to everyone when they get older ) IT’S NOT THE SAME ! I have several more insignificant effects , but I can live with them.

    Like

    • Bob Bolhuis, thanks for your comments. You are right there are no two brain injuries alike and we all need to be aware of that.
      Keep healing!

      donna o’donnell figurski
      Author of “Prisoners without Bars: A Caregiver’s Tale”
      donnafigurski.com
      survivingtraumaticbraininjury.com
      donnaodonnellfigurski.com

      Like

  3. Kathy Figurski said:

    It’s hard to read this and understand your friends’ (unsolicited) advice – I have NEVER seen anyone work as hard as David.
    In my opinion, he is constantly challenging himself to improve. He shames me as I try to force myself to get on that treadmill- I always find an excuse. He once told me, he has no choice – it is the only way he knows to survive this TBI, to constantly try to improve
    To me, his perseverance, his stamina and his absolute commitment to “challenge” himself is beyond comprehension and should be applauded, not admonished for not working hard enough!
    His friend may have meant well, BUT as Dave said “I knew better” – Thank goodness!
    Keep on, keeping on!!!

    Like

    • Hi Kathy, yes, I see David constantly pushing to improve his situation. He always goes above and beyond. Sometimes I have to pull him back. What folks don’t understand is because of his brain injury everything takes him three to four times longer to do. Just getting up in the morning, eating, showering, and dressing, which most people can accomplish in an hour or less will take him at least twice that time. Not because he wants it to – it just does. Life has drastically changed for both David and me since his brain injury, but at least we have a life and we have each other. We appreciate your thoughts.

      donna o’donnell figurski
      Author of “Prisoners without Bars: A Caregiver’s Tale”
      donnafigurski.com
      survivingtraumaticbraininjury.com
      donnaodonnellfigurski.com

      Like

  4. It’s so true…. I think it’s even more true for mild TBI “survivors”, though we’re not necessarily survivors in the same way. For me a simple home accident changed who I was in a single moment and it took me 6 months to figure out some changes might never go away.

    For me it’s primarily cognitive, and verbal input/output, though there are very minor physical limitations on my right side. There are some things that are fine – I didn’t lose much of my memory / retention, nor did I lose my intelligence, math or writing skills. I “just” lost some of my ability to express it or use it “on the fly”.

    In some ways my biggest challenge isn’t the cognitive issues. They’re kind of black and white. It is that I have the capability, but my deficiency is capacity. It’s better than it used to be! But for me, the more I use the brain, the worse my headaches and or nausea get… until brain fatigue literally knocks me out. Falling asleep sitting up kind of fatigue.

    So, I have to pace myself. Getting up, shower, brushing my teeth, getting dressed is relative “no-brainer”. Make the bed, shoes and socks on = 1. Washing my hair, putting on makeup, and dressing to go out in public brings me to a solid 3 with symptoms. I have to take a 20-30 minute break to settle things back down. And so goes my day. Changing focal points (filing, bills, mail, cleaning) is nauseating in about 20 minutes.. Then the 1 hr break to settle, then restart or switch to a no-brainer task. If I push myself too far past the physical limit (I just want to finish this item) my recovery time is longer. 2-3 hr naps between tasks. In some cases where external factors mean I can’t stop, it can put me out of commission for a day or two.

    Logically, I can do three things at the same time, the fourth locks my brain up. People don’t realize how many single activities are actually multi-threaded inside the brain. For example, I love my total gym… To use it I have to get on it (I can do that) step-by-step building from 1-3. I balance on my total gym, hold the handles so the board doesn’t move, make sure my feet are solidly planted. Then I try to get on my back. My brain freezes it literally doesn’t see what to do next. I can only continue if someone is there to take over one of the first three things.

    Prioritizing is difficult, keeping on task is difficult, following a procedure that got interrupted is a challenge. Problem solving when everything has the same “value” takes a lot of time and sometimes requires me to write things down and put a “stake in the ground” to work from step by step. This makes driving difficult (dangerous in busy environments) and live conversations with people who need information from you “quickly” impossible.

    But, when I try to talk about what I can’t do or need help with, I get “Just do the first one…” “just look at it differently”… “Look at all you can do…” “You’re so much better than at first”… “It’s all about attitude”… Or what hurts the most is… “Do you really need help with that? You did it last week.” Especially when it comes from family or friends. Yes, I’m better, but if I’m asking for help, it’s because I need it, or I’m trying to pace myself and if I push it, I can’t do the stuff on my list tomorrow, which is also important.

    It’s not about what I can’t do sometimes… No-one understands that, except the professionals I work with, most (not all) of the aides I’ve had, and a few friends… The people who care enough to listen, question and clarify, understand capacity vs capability. And the symptom impacts…

    When it comes to things people say…The word I would like to eliminate from caretaker and friends vocabulary is “JUST”. It may be just to you, but it isn’t just to me.

    Like

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