TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI’

Survivors SPEAK OUT! . . . Su Meck

Survivors SPEAK OUT! Su Meck

presented by

Donna O’Donnell Figurski

 

 

1 Su Meck 10862625_10204051895112757_5004286472948685848_o

Su Meck – Brain Injury Survivor & Author of “I Forgot to Remember”

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

My name is Su Meck.

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

I currently live in Northern Virginia (USA) outside of Washington D.C.

On what date did you have your brain injury? At what age?

3. My brain injury occurred on Sunday, May 22, 1988. I was twenty-two years old at the time.

4. How did your brain injury occur?

A ceiling fan in my kitchen fell and hit my head, knocking me down. As I fell, my head hit the kitchen counter, and then hit the floor.ceiling-fan-clip-art-1160226

5. When did you (or someone) first realize you had a problem?

My husband, Jim, was sitting right there at the kitchen table reading the Fort Worth Star Telegram when the ceiling fan fell on me. He saw the whole thing.

6. What kind of emergency treatment, if any, did you have?

Jim called 911 right away. The ambulance came and took me to the closer (smaller satellite) hospital. But it was quickly determined that I needed to be at the bigger downtown Forth Worth hospital because that hospital actually had an MRI (magnetic resonance imaging) scan machine.

7. Were you in a coma? If so, how long?

Whether or not I was in a coma depends upon which pages of my (handwritten) medical records one reads. I was definitely in and out of consciousness for a few days, but I am unsure as to if I was in an actual coma.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

Rehab? In Texas? In 1988? LOL! The “rehab” that I had was terribly inadequate, especially by today’s standards. I was assigned a physical therapist and an occupational therapist, but it is unclear what specifically those people did with me.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?Forget

The most significant loss for me was experiencing total retrograde amnesia, which means I lost all of my memories of roughly the first twenty-two years of my life. Initially, both short- and long-term memory were affected. I did not recognize my husband, my two children (ages 2 and 1), any other family members, or friends. I also couldn’t walk, read, count, brush my teeth or hair, feed myself, etc. My personality post accident is the opposite of my personality from before the accident.

10. How has your life changed? Is it better? Is it worse?

My life totally changed. Better or worse? It’s way more complicated than that. I don’t personally know what my life was like before the accident. I have to rely on the memories and stories of others who knew me. Which, by the way, really kind of sucks.

11. What do you miss the most from your pre-brain-injury life?

I don’t have any memory of anything from my life pre TBI (traumatic brain injury): all of my childhood/teenage/early adulthood memories, learning how to ride a bike, birthdays, grandparents, learning how to play piano and drums, vacations, my first crush, my first kiss, pets, losing my virginity, college-looking (the first time), sorority rush/initiation/parties/friends, meeting and falling in love with my husband, my wedding, the pregnancies of my two boys and their first years, and so many, many, many more …

12. What do you enjoy most in your post-brain-injury life?Speaker

Advocating for my fellow TBI survivors. I love speaking to groups of survivors, caregivers, and anyone really about what it is like to live with a TBI.

13. What do you like least about your brain injury?

Nearly everything else

14. Has anything helped you to accept your brain injury?

Even though there are still some days that I feel as though I can’t do, or understand, or remember a damn thing, the process of writing my book helped me to come to terms with how far I have actually come since my accident.

15. Has your injury affected your home life and relationships and, if so, how?

Oh yes! I don’t feel as if I am part of my family (my parents’ and siblings’ family). I think of my kids as more like my siblings. And my husband? Well … We are still married (33 years) … But since my accident, there have been some genuinely shitty times!

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

I’m sure it has changed in many ways, but one thing that comes to mind (and the thing that was most noticeable when I was in college at both Montgomery College and then at Smith College) is the fact that I feel way more comfortable around people in their 20s and 30s than I do around people my “real” age (50s).

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

Jim, my husband, is my main caregiver now. But at times, my children often took on the caregiver role because Jim traveled so much.

3 Su Meck & Jim 10835181_659603147482572_2314662174685025134_o

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18. What are your plans? What do you expect/hope to be doing ten years from now?

Wow! This is a tough one. I would love to continue writing (and publishing) stories, essays, lyrics, whatever. I always wanted to be part of a working/performing rock band, playing drums as well as singing. I want to become more proficient on the guitar, uke, and piano. I’d love to travel around speaking and educating people about what it is like to live in this crazy world as a TBI survivor. I’d love to move back to New England. I want to ski, and hike, and learn to swim. I’d love to have a dog (a service dog would be great to keep me from wandering). I want to take long extended vacations to Australia, New Zealand, England, Ireland, and even Canada.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Be happy with who you are now, even if you are one hundred percent different from the person you were before. Be honest with yourself and others. It is okay to ask for help. Graduating from Smith College in 2014 was a huge accomplishment for me. In fact, Smith almost did me in physically, mentally, and emotionally. But Smith also gave me a tremendous gift: An enthusiastic love of reading and learning. Keep learning!

I forgot to Remember Book Cover20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Please buy and read my book, I Forgot to Remember: A Memoir of Amnesia. (I’m shameless!) And, if you like it, please write a positive review on Amazon and/or Goodreads. (Yes, I’m truly shameless!)

 

 

Please check out Su Meck’s book. It’s a great read!

 

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Caregivers SPEAK OUT! . . . . Carol . . . (for her husband, Andy)

Caregivers SPEAK OUT!

Carol (caregiver for her husband, Andy)

presented by

Donna O’Donnell Figurski

 

Carol1. What is your name? (last name optional)

Carol

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

Toronto, Ontario, Canada

3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

Andy is my spouse. He was 53. He was in a motorcycle accident on his way to work.th

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

I began care the day of the accident. I was in the hospital every day for eight to ten hours waiting for Andy to wake up. We finally came home after five months. I became his full-time caregiver, and I still am. I was 50; I just turned 52.

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

No

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

Yes. I was working full-time, but I resigned after the accident.

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

We were lucky to have a full team of therapists. But, we had no support-workers because Andy felt that the people were invading his privacy.

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

Immediately. I was in the hospital every day to give my husband moral support and the healing effect of touch.

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

My husband’s coma was induced. I was in the ICU (intensive care unit) with him all day. Holding his hands. Playing his music.e799afda1f4dee4bd0c8c6e0606325b1

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

My husband was admitted to rehab for almost three months. It was exceptionally long. But, he was not in a position to benefit from all the therapies. He suffered from seizures, and the medication made him tired. He slept most of the days. I was at rehab with him all day. I tiptoed out for coffee breaks, but I didn’t go far.

11. What problems or disabilities of your brain-injury survivor required your care, if any?

I help with Andy’s problems with gait, balance, cognitive functions, memory, and emotional lability (involuntary, sometimes inappropriate, emotional displays of mood, which are overly rapid and exaggerated). I take care of meals, finances, housekeeping, and Andy’s soiled beddings. After continuing physio three times a week, Andy found that his gait and balance improved. The problem with his urinary tract got better on its own. I still accompany him to all his therapy sessions because of his memory problem.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

Life has become simpler. No running after unnecessary things. This gave me the chance to notice more, and I realized that there all lots of kind and helpful people around the community. Our roles changed – I have to deal with the house and finances.

13. What do you miss the most from pre-brain-injury life?hotel-clipart-transparent-background-4.png

We travel together two or three times a year. Andy was the one who used to plan and book the trips and accommodations. I miss him sharing his ideas about everything.

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

Being with him. Seeing the progress every day. Listening to his fears and seeing him happy.

15. What do you like least about brain injury?

A lot of people are not aware of TBI (traumatic brain injury). I myself never heard of it until my husband was diagnosed as having a TBI. It has drastically changed his life. I have to deal with all the house work and repairs. I have to make the final decisions.

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

Yes. Andy used to tell me that there are no regrets in life. Everything is done through our own decisions. We cannot say “What if … ?”No Excuses

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

Yes. My role is now changed. My two children and I miss Andy’s ideas, suggestions, and guidance.

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

Yes. I have become overprotective. I don’t want to leave my husband alone. My friends are all working, so not only is there no time to meet, but it’s also not easy for me to leave the house without him.

volunteers19. What are your plans? What do you expect/hope to be doing ten years from now?

I would love to volunteer and help other people.

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

Be patient; time heals. It’s a learning process to both the survivor and the caregiver. And, it’s absolutely worthwhile! It changed my perspectives in life.

 

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Survivors SPEAK OUT! Jim Ledgewood

Survivors SPEAK OUT!  Jim Ledgewood

presented

by

Donna O’Donnell Figurski

Jim Ledgewood 1

 

 

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

Jim Ledgewood

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

Phoenix, Arizona, USA

3. On what date did you have your brain injury? At what age?

January 27, 2006      Age 27

4. How did your brain injury occur?

I was shot with a 9 mm on the left side of my face.14 Jim Ledgewood 071518 f0282624

5. When did you (or someone) first realize you had a problem?

I did not realize I had a brain injury until seven years after being shot. My company brought to my attention that something was off.

6. What kind of emergency treatment, if any, did you have?

I had multiple surgeries. They had to put twenty-five coils around my carotid artery to stop the bleeding around my brain.

7. Were you in a coma? If so, how long?

I believe they induced a coma in me. Not sure, though.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I had inpatient rehab (cognitive, physical, and speech therapies) at St. Joseph’s Hospital/Barrow Neurological Institute and at Mesa General Hospital; outpatient rehab (cognitive, physical, occupational, and speech therapies), for one week at Mesa General and for one week at Chandler Regional Medical Center.

18 Jim Ledgewood 071518 f293356169. What problems or disabilities, if any, resulted from your brain injury(e.g., balance, perception, personality, etc.)?

The frontal and temporal lobes were damaged, so all the things that those two parts of the brain control were affected in a negative way.

Donna’s note: The cerebral cortex can be divided into four sections, which are known as lobes: frontal, parietal, occipital, and temporal.

Following a frontal lobe injury, an individual’s abilities to make good choices and recognize consequences are often impaired. Damage can cause increased irritability, which may include a change in mood and an inability to regulate behavior, such as anticipation, goal selection, planning, initiation, sequencing, detecting errors, and initiating novel responses.

The temporal lobe is located behind the ears and extends to both sides of the brain. It is involved in hearing and holds the primary auditory cortex, which receives sensory information from the ears. Secondary areas process the information into speech and words. Left temporal damage can disturb recognition of words and impair memory for verbal material.

10. How has your life changed? Is it better? Is it worse?

There are certain things that I was able to do before my TBI (traumatic brain injury) that I cannot do now. This has affected all aspects of my life.

11. What do you miss the most from your pre-brain-injury life?

I miss the control I had over my life.Control

12. What do you enjoy most in your post-brain-injury life?

I like helping others and being able to share my story. I take pleasure in doing something that only 5% of 5% of the population is able to do.

13. What do you like least about your brain injury?Jim Ledgewood 2

Everything

14. Has anything helped you to accept your brain injury?

Learning and understanding my TBI and what it is doing have helped.

15. Has your injury affected your home life and relationships and, if so, how?

I have to move at a different pace than others. A lot of people around me have a hard time because they don’t know or understand why I do what I do or why I express myself the way I do. Once people learn that I have a TBI, the part of my brain that was injured, and what that part of the brain controls, they get more comfortable. But, I believe they are still not 100% comfortable.

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

I was not in a relationship before my injury. I have found it hard to get into a relationship since my injury.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

I am my own caregiver.

18. What are your plans? What do you expect/hope to be doing ten years from now?

I hope to have that relationship/family that I thought I would have by now. I don’t try to look that far into the future.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

6iyo54M5TI would say that you should learn as much as you can about your TBI. That way you know that problem. Then you can try to come up with solutions to better your life.

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

It is not what happens – it is what you do about it that defines the person you are.

N-E-V-E-R  G-I-V-E  U-P!

 

Please leave a comment/question. I will respond.

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Survivors SPEAK OUT! . . . . . . . Carole Starr

Survivors SPEAK OUT! Carole Starr

presented

by

Donna O’Donnell Figurski

 

Carole Starr Survivor Speaker

Carole Starr – Brain Injury Survivor – Author of “To Root and to Rise”

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

Carole Starr

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

Maine, USA

3. On what date did you have your brain injury? At what age?

I had my brain injury on July 6, 1999. I was 32 years old.

4. How did your brain injury occur?

I was in a car accident. My vehicle was broadsided on the driver’s side by someone going about 50 mph.

5. When did you (or someone) first realize you had a problem?

My brain injury was diagnosed about six weeks after my accident. It was the physical therapist I saw for the whiplash who realized that I also had a brain injury. It became apparent to me when I tried to return to my regular life and struggled with tasks that used to be easy.

6. What kind of emergency treatment, if any, did you have?

After my accident, I was transported by ambulance to the emergency room. They diagnosed me with severe whiplash and other soft tissue injury. The signs of the brain injury were there, but they were missed.

7. Were you in a coma? If so, how long?

I was not in a coma.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I didn’t receive any brain injury rehab until nearly a year after my injury. That was the worst year of my life, as I tried and failed numerous times to return to my old life. A physiatrist referred me to outpatient brain injury rehab. I’ve had physical, occupational, speech, and recreation therapies and counseling. I’ve also found help from alternative therapies, including cranial osteopathy, neuro-optometry, and homeopathy. I received rehab therapies on and off for several years. I still see several medical professionals, and I continue to make slow progress, even after more than eighteen years.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

tired-womanI am plagued by extreme mental fatigue, sound and light sensitivities, balance issues, memory loss, visual midline shift, and difficulties with decision-making and problem-solving.

10, How has your life changed? Is it better? Is it worse?

My life changed dramatically after my brain injury. I had to give up my teaching career and my classical music hobby. I struggled to manage everyday-life tasks. I felt dependent on family and friends. For many years, I grieved the loss of my old life. I hated the new me. It was a long process to work through that grief and start to build a new life. I try really hard not to judge whether my life is better or worse. It’s just different. That helps me with the acceptance process.

11. What do you miss the most from your pre-brain-injury life?

I miss performing as a musician. I miss being able to go a whole day without needing to rest. I miss being able to trust my brain to do what I want it to.

12. What do you enjoy most in your post-brain-injury life?

Brain injury gave me the passion for a cause that was missing in my old life. This has become my life’s work. I like being able to use my experience to help other brain injury survivors. I do that through my book (To Root & To Rise: Accepting Brain Injury), my keynotes at brain injury conferences, and the volunteer group I lead (Brain Injury Voices).

Carole Starr & Book To Root and to Rise

Carole Starr – Brain Injury Survivor

13. What do you like least about your brain injury?

I dislike having to rest every day and missing out on activities I’d like to do. I never know when too much sound, light, motion, talking, or thinking is going to overwhelm my brain and require hours or days of rest to recover from.

14. Has anything helped you to accept your brain injury?

For a long time, I didn’t think I could ever accept my brain injury. It was a long process. Some things that helped me were support-groups, reading books by other survivors, counseling, journaling, crafts, learning to laugh at myself, finding silver linings, and focusing on what I’m thankful for.

15. Has your injury affected your home life and relationships and, if so, how?

For a long time, I felt like I was a burden – the one who always needed help. I had to learn to accept help from my family and friends and not resist their advice. I can now manage taking care of my home, but everything requires strategies. 67-Help_me

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

My life is much smaller. My daily activities are short and quiet. If I want to do something bigger, I know that the price will be days on the couch recovering my mental energy.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

I’ve been able to live on my own. Family, friends, and medical professionals have helped me learn strategies to take care of myself.

18. What are your plans? What do you expect/hope to be doing ten years from now?

kids-hand-writing-clip-art-hand_with_pencil_5CI plan to continue writing and speaking about brain injury. I want to use my experience to make a difference. I’ve spoken at brain injury conferences and events in six states so far. I’d like to speak in all fifty! I’d also like to help other survivors create education/advocacy groups like Brain Injury Voices in other states.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Find an activity that the new you can enjoy and do successfully. Start small, find success and build on it. Over time, small successes can grow into large achievements and lead you in directions you never imagined.

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Find ways to connect with other survivors – either through an in-person support-group or online. Interacting with others who “get it” is invaluable.

 

Know that progress doesn’t stop after the first year or two after brain injury. Our brains are always healing. We may never be able to return to our old lives, but we can continue to grow into this new one.

Please feel free to contact me, either through StarrSpeakerAuthor.com or BrainInjuryVoices.org.

Brain Injury Voices Logo

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

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New NEWS: Preorder Prisoners without Bars: A Caregiver’s Tale

Prisoners without Bars: A Caregiver’s Tale

Did you know you can preorder your copy of my book, Prisoners without Bars: A Caregiver’s Tale?

You can! It’s easy.

You can order it in e-book form or paperback copy on Amazon.com or Barnes & Noble.com.

 

 

 

 

 

 

 

 

Just click the book cover or the title below.

Prisoners without Bars: A Caregiver’s Tale

Can’t wait for you to join our journey.

 

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As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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New NEWS: Countdown to Prisoners without Bars: A Caregiver’s Tale

Can’t wait for the release of my book, Prisoners without Bars: A Caregiver’s Tale

 

04.29.18

184 days to the release of Prisoners without Bars: A Caregiver’s Tale

4,440 hours to the release of Prisoners without Bars: A Caregiver’s Tale

266,400 minutes to the release of Prisoners without Bars: A Caregiver’s Tale

15,984,000 seconds to the release of Prisoners without Bars: A Caregiver’s Tale

But–WHO’S Counting?

Me! Me! Me! I am!

Check out my new website:  donnafigurski.com

 

Survivors SPEAK OUT! Christine Durant

Survivors SPEAK OUT!  Christine Durant

presented

by

Donna O’Donnell Figurski

 

 

28722393_1570405716328305_1310268133_n1. What is your name? (last name optional)

Christine Durant

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

Connecticut, USA

3. On what date did you have your brain injury? At what age?

I was 21.

4. How did your brain injury occur?

Medical neglect

5. When did you (or someone) first realize you had a problem?

I did when I was 13.

28829269_1570406372994906_1587925987_n

Christine Durant – Brain Injury Survivor

6. What kind of emergency treatment, if any, did you have?

Brain surgery

7. Were you in a coma? If so, how long?

No coma

8. Did you do rehab?

Yes

What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I went to inpatient rehab for a week or so.

28740893_1570406139661596_1150992867_n

Christine Durant – Brain Injury Survivor

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

I have balance and visual memory issues and some difficulty with visual identification. I had a LARGE personality change that included explosive issues and lack of impulse control. I also had double vision.

10. How has your life changed? Is it better? Is it worse?

The medical neglect caused excruciating neurological pain, but it stopped with my first brain surgery. I was a diagnostic educator. My issues made me better at what I dith-2d because I finished my undergraduate work like this and did all four of my graduate degrees with strategies I developed for myself. I believe I am better off.

11. What do you miss the most from your pre-brain-injury life?

Energy

12. What do you enjoy most in your post-brain-injury life?

My ability to see things differently than most folks

13. What do you like least about your brain injury?

Lack of energy and visual memory issues

14. Has anything helped you to accept your brain injury?

28741255_1570405966328280_1345947392_n

Christine Durant – Brain Injury Survivor and partner.

Meeting my wife and having a 25-year relationship … all post TBI

15. Has your injury affected your home life and relationships and, if so, how?

I am more sensitive to other people’s moods now. I can become what they are feeling.

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

Everyone who was my friend at that point is not a friend now. However, I chose better after my recent brain surgery because they all helped us through it.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

I don’t really have a caregiver. I have a “care-partner.” We had an accident together twenty years ago. Someone was late for lunch and went over the yellow line – into us head-on. We help each other as life necessitates.

18. What are your plans? What do you expect/hope to be doing ten years from now?

I would like to travel on the money from the accident while we still can. In ten years, I will be retirement age!Travel

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Know that you will adjust to your new personality. Find life-giving, happy people to get you there. I went home to my mother at 21. She was always an angry woman. I didn’t realize what a toll that was taking on me until I met my sweet, wonderful, happy wife.

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Christine Durant – Brain Injury Survivor & partner

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Give it time. Don’t be hard on yourself. Find a passion that you are able to do within the confines of your new body. My wife has a broken foot from the accident that can’t be fixed. She used to paint theatrical scenery for Broadway. She can’t do that from a wheelchair. So, she discovered she has a passion for pottery.

 

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

(Clip Art compliments of Bing.)

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