TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Family’

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.

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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Caregivers SPEAK OUT! Rosemary Rawlins

SPEAK OUT! – Rosemary Rawlins

by

Donna O’Donnell Figurski

 

Rawlins, Rosemary

Rosemary Rawlins – TBI Caregiver, Author, Blogger, Speaker

1. What is your name? (last name optional)

Rosemary Rawlins

2. Where do you live? (city and/or state and/or country)     Email? (optional)

Glen Allen, Virginia, USA

3. What is the TBI survivor’s relationship to you?

Husband – Hugh Rawlins (We had been married 24 years at the time of his injury.)

How old was the survivor when he/she had the TBI?

46

What caused your survivor’s TBI?

A car (driving nearly 50 mph) hit him directly from behind as he was riding his bicycle home from an afternoon workout.

4. On what date did you begin care for your TBI survivor?

Immediately. I stayed in the Intensive Care Unit, and I visited him every day in Acute Brain Rehab. Hugh was in the hospital 33 days.

Were you the main caregiver?

Yes

Are you now?

I don’t consider myself his caregiver anymore.

How old were you when you began care?

46

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

Yes – twin daughters, age 14. My daughters, Anna and Mary, are wonderful. They were the reason Hugh and I were able to go on.

6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?

I was a self-employed résumé writer and consultant. I continued working, but I drastically cut down on work to care for Hugh.

7. Did you have any help? If so, what kind and for how long?

All of my immediate family lived out of state, but people visited periodically, and that helped. Neighbors and friends helped with driving and food, but caring for Hugh was mainly my full-time responsibility. I hired a night nurse so my daughters and I could sleep. That went on for several weeks, until we were able to get Hugh on a day/night sleep schedule. I was exhausted all the time.

8. When did your support of the survivor begin (e.g., immediately – in hospital, when the survivor returned home, etc.)?

Immediately

9. Was your survivor in a coma? If so, what did you do at that time?

Yes – for a week. I sat by Hugh’s bed for most of it. I kept a journal. My daughters were there a lot too. We simply waited and read notes to him from friends and family far away. We talked to him and waited.

10. Did your survivor have rehab?

Yes

If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)?

Hugh was put into the inpatient hospital acute brain rehab for two weeks. He was then released to Day Rehab at a nearby facility for daily outpatient recreational, occupational, physical, speech, and other therapies. (He was in a group therapy and did Interactive Metronome therapy.)

How long was the rehab?

He was released from physical therapy first after a few months, then occupational therapy, and finally speech/cognitive therapy after about 14 months.

Where were you when this was happening?

I was usually at home trying to work, but went in with Hugh from time to time. I wanted to know his therapists, and they worked with me on ways to supplement therapy at home. It was a great help to learn from them. I also hired a personal trainer to cross-train Hugh after he was released from physical therapy, and that helped him make strides in his progress. He swam and did exercises that would use both sides of the brain. Physical exercise helps the brain; at least in his case it made a huge difference.

11. What problems or disabilities of your TBI survivor required your care, if any?

For three months, Hugh required a helmet and gait belt every time he stood up because he had a chunk of his skull cut out to relieve brain swelling. After three months, he had that bone replaced, and his balance improved. Hugh required help and prompting with everything – grooming, eating, dressing, and walking. He had swallowing problems and lost most of the use of his left side. By four months, he was more independent, but he had some short-term memory and judgment issues. By two years out, he was in very good shape and started working again.

12. How has your life changed since you became a caregiver?

I don’t consider myself a caregiver anymore in the regular sense of the word, at least not for my husband. Life was miserable in the beginning because there were so many questions without answers. I suffered ambiguous loss because Hugh sat and stared into space, and I missed him. He was with me, but radically changed. I felt grateful and ungrateful at the same time.

Is it better? Is it worse?

I see my life as “just life” with all its ups and downs, and I try to live it day-to-day as it unfolds. It’s the only thing that’s kept me sane. Life right now is good. I work and Hugh works. He made an amazing recovery.

13. What do you miss the most from pre-TBI life?

Feeling safe in the world and feeling a full sense of joy. TBI has made me more neurotic, and I find I get stressed easier now. I work on trying to minimize this every day.

14. What do you enjoy most in post-TBI life?

The love we rekindled and share. Also the work we do together to help others going through what we went through. Hugh speaks with me at some conferences, and we now have a shared mission in life – we didn’t have that before.

15. What do you like least about TBI?

How it robs a person of his or her identity. How it hijacks a family and takes over your lives for a very long time. TBI is full of cruel surprises popping out of nowhere, new deficits that surface, drugs and side effects, seizures and personality changes.

16. Has anything helped you to accept your survivor’s TBI?

Yes. Loving him, plain and simple.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

I’m sure it has affected my home life in ways I never imagined. My children became caregivers early in life to help me, and they had stresses of their own. In many ways, they missed out on doing a lot of things because their father was very sick, and I was completely focused on Hugh, when I used to be focused on them. But we are all very close today and know that things could have turned out much worse than they did. We’re thankful he achieved the level of recovery he did.

18. Has your social life been altered or changed and, if so, how?

Yes. Friends come and go, but I see that as part of modern life too. We have one set of friends in school, then another when we start work, then they change as we marry and have children. It’s a part of life. We love our friends, and some have stuck by us through all of it – we cherish those friendships immensely. I have no hard feelings for friends that drift away; it’s just the natural ebb and flow. I love it when I see someone I haven’t seen in years and we pick up where we left off. Friends mean a lot to me. On positive note, I’ve met some of the best friends of my life through Hugh’s TBI. I feel very close to several people I’ve met because of brain injury, including a few doctors and therapists.

19. What are your plans?

To keep being a writer, a job I love. TBI started my book writing and speaking career, and I love working from my home and connecting with others.

What do you expect/hope to be doing ten years from now?

I hope to be semi-retired and living in Nags Head, North Carolina, at the beach. Hugh loves to surf, and I love the ocean and the serenity it brings. I’ll always keep reading and writing, though, for the love of it.

20. What advice would you offer other TBI survivor caregivers?

Wow, there’s so much I’ve learned in the past twelve years. Here are some I consider most important for caregivers:

  • Pace yourself – TBI is definitely a marathon, so be sure to keep some space in your life for you at all times
  • Keep up with friends, and ask them how they are. Try to do things that are not TBI-focused all the time. Go to a movie, or go for a walk and talk about your girlfriend’s new job. Friendship is a two-way street. Being isolated can lead to depression.
  • Watch your own health. I came down with shingles 15 months after Hugh’s injury because I didn’t manage my stress. I love guided-imagery tapes. They helped me sleep and relax.
  • Seek counseling or join a support group for times you want to vent, instead of using your family and friends to vent to all the time. You will be redirected toward more healthy outlets, and talking to someone “neutral” has a healing effect.
  • Right after Hugh’s TBI, I kept working toward returning to our “old” life. It took me a very long time to realize that the changes that occurred made that impossible. We had to start over. Counseling helped with this.
  • Be honest with yourself about what to expect, and try to celebrate each advance.
  • Advocate, vote, stay informed of your rights and let your voice be heard. Support your local Brain Injury Association and WETA, who produces BrainLine.org.

Do you have any other comments that you would like to add?

I have great respect for TBI caregivers. I can’t think of a harder job on this earth. Hugh got better, much better than most people do, and for that I am humbled and grateful, but I pray every single day for people who struggle a lifetime with TBI in ways that drastically limit them – especially when they cannot find the resources they need. These are the families that keep me motivated to advocate for the rights and support of TBI individuals and their caregivers. So much more research and funding needs to happen to make life more manageable and enjoyable for all families affected by TBI. We need awareness, education, support, research, treatments, and many people need ongoing rehab to maximize their potential. If we join together, we can all make a difference.

Rosemary’s BIO:

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Rosemary and Hugh Rawlins

Rosemary Rawlins is the author of Learning by Accident: A Caregiver’s True Story of Fear, Family, and Hope, and a regular blogger for BrainLine.org. She also writes the Family Matters column for Brain Injury Journey Magazine. Rosemary speaks nationally at libraries, TBI events, and conferences. You can learn more about her at www.rosemaryrawlins.com

 

You can also watch a very informative video about how Rosemary and Hugh pieced their lives together again with the help of some very special counselors. Brain Injury Resources – Couples and Traumatic Brain Injury

 

Thank you, Rosemary, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

If you would like to be a part of this project, please go to TBI Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Photo compliments of Rosemary.)

Disclaimer: The views or opinions in this post are solely that of the interviewee.

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