TBI – Survivors, Caregivers, Family, and Friends

Archive for the ‘Survivors SPEAK OUT!’ Category

Survivors SPEAK OUT! . . . Abi

Survivors SPEAK OUT! Abi

presented

by

Donna O’Donnell Figurski

 

Abigail

Abi – brain injury survivor

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

Abi

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

Columbia City, Indiana, USA

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

I had my TBI (traumatic brain injury) at age 20.

4. How did your brain injury occur?

I was hit by a freight train in a suicide attempt.

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

I knew I had a problem when I started speaking, as my voice pitch changed quite a bit. Also, when I was asked to remember things from the day before, I had trouble doing so.

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

I was taken to a hospital right away. In addition to the problems noted above, I also had a messed up back and an amputated right arm, so those were tended to right away. I was also immediately given stitches to close up a wound on my head.

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

I don’t think I was in a coma, but I don’t recall very well the two days after my incident.

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 occupational therapy, physical therapy, and speech therapy both as an inpatient and as an outpatient. I was in the rehab inpatient therapy for at least six weeks. I was in outpatient therapy even longer, but the outpatient therapy focused more on my missing arm. I also had in-home therapy.

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

I have poor balance and slurred speech. I experience personality changes.

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

I believe my life has changed for the better, as I’ve met so many who are worse off than me.

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

I miss nothing from my pre-brain-injury life, as my personality changed for the good. But I do miss people understanding me.

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

Abigail 2

Abi – brain injury survivor

I like to meet others with a TBI and other disabilities.

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

I dislike my slurred speech and sounding different than I used to.

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

Yeah – meeting those worse off

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

I’m much better, as I’m more social.

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

Yeah. I went from being deathly shy to a social butterfly.

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

My mother is my main caregiver. Yeah, I do understand what it takes. It’s hard work.

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

I plan to have a family and to be a counselor helping suicidal people.

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.

Don’t give up.Don't Give Up

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

My advice is Don’t give up, and be you.
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

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Survivors SPEAK OUT! . . . . . . Bart Goldstein

Survivors SPEAK OUT! Bart Goldstein

presented

by

Donna O’Donnell Figurski

Bart Goldstein 2

Bart Goldstein – Survivor

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

Bart Goldstein

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

Delmar, New York, USA

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

My brain injury happened on December 29, 2001. I was almost 17.

4. How did your brain injury occur?

I was riding with friends in an auto, and we had an accident. I was in the back seat. We were just teenagers clowning around. There were no drugs or alcohol.

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

I was in a coma after the accident.

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

I was airlifted to emergency surgery. Later I was given a trache and a G-peg (feeding tube inserted directly into the stomach by percutaneous endoscopic gastrostomy).

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

Yes. I was in a coma for a month.

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?

Bart Goldstein & Dog

Bart Goldstein – Survivor

I had speech therapy, physical therapy, and occupational therapy as an inpatient for three months at Helen Hayes Hospital. Then I had five more months of therapy as an outpatient at the hospital.

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

I have problems with walking, my speaking sensibly, control of anger, partial blindness, and memory.

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

I am much more of a planner now than I was prior to accident. An article, “The Journey Back,” from Brain Injury Awareness Month a couple of years ago answers this question and most of the others: http://spotlightnews.com/uncategorized/2014/03/20/journey-back/

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

See the Spotlight article (address given in the answer to the question 10).

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

See the Spotlight article (address given in the answer to the question 10).

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

See the Spotlight article (address given in the answer to the question 10).

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

I’ve been helped by my Christian faith, my parents, and my sense of humor.

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

See the Spotlight article (address given in the answer to the question 10).

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

See the Spotlight article (address given in the answer to the question 10).

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

My folks are my main caregivers. Caregiving takes a lot of love and more.

Bart & Joel Goldstein

Bart Goldstein – Survivor with Father, Joel Goldstein (author of “No Stone Unturned”)

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

I hope to continue to heal and to find a good woman and settle down.

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.

Learn patience. It’s a long haul.

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

Keep your faith and your sense of humor. Try alternative therapies.

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

If you REALLY like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

Survivors SPEAK OUT! . . . . . . Ina M. Dutkiewicz

Survivors SPEAK OUT! Ina M. Dutkiewicz

presented

by

Donna O’Donnell Figurski

 

Dutkiewicz, Ina M. Survivor 041316

Ina M. Dutkiewicz – Survivor

 

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

Ina M. Dutkiewicz, pronounced “Ena”

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

Milford, Michigan, USA     inadutkiewicz@gmail.com

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

I had my brain injury on February 3, 2010. I was 43 years old.

4. How did your brain injury occur?

While driving to work, I slid through a stop sign because of black ice. I was hit by a pickup truck.

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

I was immediately put into a coma.

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

I was in the Neuro-Intensive Care Unit for three weeks. A feeding tube was in my belly, and an incision was made in my forehead (to relieve the pressure on my brain from bleeding, I think).

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

Yes. I was in a coma for a total of four and a half weeks. My coma was not medically induced.

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)?

I started inpatient rehab for six weeks at a head injury place where I had to live (Origami in Mason, Michigan). Then I was able to transition to outpatient rehab. I still have to return daily for therapies and doctor appointments. I have done physical therapy, occupational, speech, and language therapies, driving therapy, and vocational therapy

How long were you in rehab?

I did rehab for a total of five years. I still do counseling every other week.

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

I have gait issues, memory problems, and word-finding difficulty. My personality changed. (I’m more docile – easy going – now.) My pelvis was broken on both sides from my seat belt, which means I have daily pelvis/hip pain. I have also had a headache every day since my car accident. Some days, they’re only pressure; others, pounding.

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

My life has changed 100%. My husband divorced me a year after my car accident, so now I live with my mom. I do not work. I am on disability, which is barely enough to live on.

11. What do you miss the most from your pre-brain-injury life?Dutkiewicz, Ina M.car

I miss my friends.

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

I like that I am more laid back and not as serious.

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

I dislike that I feel lost some days. I’m not working, and I don’t have anything worthy to put my hand to. My kids are now grown and living on their own. They have their own families. Also, my ex-husband has moved on to a girlfriend. It’s like I was left behind. 😦

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

My Christian faith has been a HUGE help to me.

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

I have no friends from my past (pre-TBI) life. It is sad.

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

My life has totally changed. I now spend my days with my mom – going to things she enjoys at the Senior Center. I am not really with people my age. While I enjoy the time with her, I long for age-appropriate friends.

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

My mom is my main caregiver. Yes, I realize how my TBI has changed her life. I know that she has had to give up things to support me.

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

I really would like to get a part-time job in the future. My experience is with office work. I was an Executive Assistant before my car accident, helping with payroll and AP/AR (accounts payable/accounts receivable) on top of taking care of all correspondence that left the car dealership I worked at.

Dutkiewicz, Ina M. Survivor 2 041316

Ina M. Dutkiewicz – Survivor

I19. 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.

My helpful hint is that it is okay to be different. In a lot of cases, brain injury truly is an invisible disability. In outward appearance, we look “normal” (whatever that is). That means that we can easily blend in, but oftentimes it is hard to keep up. We need to find our own group of people to hang out with who understand where we are coming from and what we deal with on a daily basis. A support-group is a good place to start.

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

Don’t give up on yourself. Others can turn away and leave you, but your strength comes from you – no one can ever take that away from you. AND, you can rely on yourself to struggle through your low days and celebrate your victories!

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

If you REALLY like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

Survivors SPEAK OUT! . . . . . . Heather Love Leffel

Survivors SPEAK OUT! Heather Love Leffel

presented

by

Donna O’Donnell Figurski

Leffel, Heather Love MS survivor

Heather Love Leffel – Multiple (M.S.) Survivor

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

Heather Love Leffel

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

Toledo, Ohio, USA     heatherleffel419@gmail.com

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

I have multiple sclerosis (MS), which essentially is brain damage. I had my first symptom at 19 years old.

4. How did your brain injury occur?

Well, my mother and twin sister also have MS. I do believe MS has a genetic aspect to it, but as of now, they don’t know the cause of MS.

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

I first noticed my MS in 1999. I was at my son’s T-ball game. I looked into the sky, and suddenly my left eye saw white flashes, and a black lace went over my vision. This was my mother’s first symptom too. I knew in my heart I had MS.

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

None. I went directly into denial without passing GO (LOL) (a Monopoly reference). I didn’t want to know I had MS, so I ignored every symptom I had. I was in complete denial.

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

No, I was not.

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 have done a brief treatment of physical therapy for my balance and walking, but I stopped going. I shouldn’t have, but I did.

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

Oh my symptoms list is a mile long! I can name some major ones. I have issues with balance and memory. I have nerve pain that results in a burning limbs sensation. I also have excruciating headaches, blurred vision, vertigo, the “MS hug” (a tightening around the waist), spasticity, speech issues occasionally, and more.

10. How has your life changed? Is it better? Is it worse?multiple_sclerosis_believe_dream_hope_sticker-r9050a576f9804d99a628b40913eb66e5_v9waf_8byvr_512

In some ways, my life is better, and, in many ways, it’s worse. I have met some of the most amazing and wonderful people through this disease. I’ve also learned to slow down and appreciate life, but MS has taken so much from me. I lost my job, my fiancé, friends, financial stability, and the energy needed to be the mother I always was.

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

I miss working and having the money to fully provide for my children all the things I needed and wanted to.

gg6402838012. What do you enjoy most in your post-brain-injury life?

I most enjoy spending any time I can with my sons and also being an MS advocate.

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

I least like what my having MS has done to my family, and I dislike the fear I have daily that I’ve passed the monster to my children.

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

Honestly, acceptance happened fast for me – maybe because I knew in my heart for so many years that I had it, but was denying it. (I showed my first symptoms in 1999, but I didn’t break down and see a doctor until 2012.)

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

Yes. I lost my fiancé. The first year after my diagnosis was challenging. I had to stop working just three months after my diagnosis. That crushed me. I was going through depression. I was also having issues with trusting my fiancé, since he lived in another state due to the military. Long story short – my trust issues were justified. He cheated on me, got the girl pregnant, and secretly married her while with me (one year after my diagnosis and after seven and a half years together).

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

Oh my, yes! I have no social life. The only social life I have is Facebook really. I’ve definitely isolated myself.

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

I am my own caregiver at the moment. My 18-year-old son helps me a lot, but I wouldn’t call him my caregiver. I absolutely understand what it takes to be a caregiver. It’s a hard and selfless thing for someone to do. Caregivers deserve the utmost respect.

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

I hope to be married to a good man – someone who can look past my MS and see me for me. I hope to have a grandbaby. I hope my son is happily married and has an enjoyable life. I hope my youngest is enjoying college and living life to the fullest. Most of all, I hope and pray that neither of my children has multiple sclerosis.

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.

The most helpful thing I can say to you if you have MS is to allow yourself to grieve for the “old” you when you need to. Let it all out, and then pick up the pieces and move forward. You must allow yourself to grieve for who you once were and to grieve when things change because with this disease you are ever-changing. Allow yourself to feel it, and then accept it and continue to be the MS warrior that you are!

58df9ecb6c5b1b58ba8911d21946404420. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

My advice to others like me is to speak out. We need to understand that we didn’t choose MS; it chose us! MS is nothing to hide or to be ashamed of; neither is your MS story. To create awareness about this disease, we must speak about it. We must all raise our voices and be heard. One person can make change – it only takes one. Be the difference you want to see!

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

If you REALLY like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

Survivors SPEAK OUT! Evan Powers

Survivors SPEAK OUT! Evan Powers

presented

by

Donna O’Donnell Figurski

 

Powers, Evan Joseph Motorcycle

Evan Powers – Brain Injury Survivor

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

Evan Powers

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

Fort Mill, South Carolina, USA

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

My brain injury happened on August 30th, 2014. I was 31.

4. How did your brain injury occur?

I was riding my Harley V-Rod Muscle with friends, and I was hit by an SUV. The driver, in a rush to buy smokes, turned illegally left and hit me. I died, was revived, fell into a coma, and “received” a traumatic brain injury (TBI) (diffuse axonal injury and brain stem damage). I had to relearn how to do everything! I’m doing very well, however – “What doesn’t kill you makes you stronger,” and I’ve proven to be a tough SOB. (LOL!)

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

At the scene of the accident

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

A lot (LOL) – a craniotomy, arm surgery (compound fracture of my left arm), and intensive therapy (cognitive, vocational, physical, vocational, mental health, etc.). And I continued therapy (once a week and checkups).

Powers, Evan Joseph hospital

Evan Powers – Brain Injury Survivor

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

Yes. I was in a coma a month.

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?

Yes. I did intensive inpatient therapy at Craig Hospital in Colorado (an incredible place!). Afterward, I continued with intensive rehab. Now I’m going only once a week.

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

I have balance issues, left-side weakness, and memory loss. I am prone to impulsivity and mood fluctuations.

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

My life has changed in many ways – both negatively and, more importantly, positively! I suffer with balance issues, left-side weakness, memory issues, impulsivity, and emotional control issues. While those deficits suck (LOL), I’ve changed in so many ways for the better. I’m more positive. (I struggled with depression terribly before the accident.) I do not take life for granted, I am funnier and more fun-loving, and I am more passionate. Further, I’ve gained an understanding into the hell of having a TBI, and I have been moved to work with those who experience likewise – encouraging, sharing, and helping other survivors!

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

I miss some things – my job, my friends (lost a lot after the accident), having a sense of purpose, working, and – crazy as it may seem, considering what happened – riding my motorcycle (LOL). … But all in time!

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

I like how positive and passionate for life I am now. J

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

I dislike not working and my left arm being weaker.

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

Yes. I have been helped by friends, doctors, experience, time, and especially my mom!

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

Yes, very much so! I’m now divorced. (My ex and I had a rocky relationship before the accident.) Because of my problem with impulse control, I rush into relationships and “move too fast.”

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

Yes. I lost a lot of friends after my accident. There were several reasons: my crazy behavior, being afraid of interacting with me, or just being “lousy friends” (LOL) – (for the best, I see now).

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

My mom is my main caregiver. She helps me out tremendously. I couldn’t have done what I did without her and my brother, Chris. Their love and support is much needed and is greatly appreciated!

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

My future plans include going to school to get a degree in a field in which I can work with TBI survivors. I want to continue to heal, and I plan to start working part-time. I intend to better myself and help others, which has me excited!

Powers, Evan Joseph

Evan Powers – Brain Injury Survivor

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.

Recovery from a TBI is brutal, but it gets better. Sometimes you run; other times, you crawl. Keep pushing and fighting – it’s worth it!

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

Be patient with yourself. Do the best you can – that’s all you can do. Keep fighting. I know that it’s hard, but it is worth the struggle! Also, reach out – get involved with other survivors. We understand each other more then others without injuries can. We’re family – rely on, encourage, and strengthen one another!

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

If you REALLY like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

 

Survivors SPEAK OUT! . . . . . . . Raquel (Rocky) Gloden

Survivors SPEAK OUT! Raquel (Rocky) Gloden

presented

by

Donna O’Donnell Figurski

 

Gloden, Raquel (Rocky Survivor1. What is your name? (last name optional)

My name is Raquel Gloden. I go by Rocky.

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

I live in Arizona, east of Phoenix; my email is brainyliferocky@gmail.com.

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

I had my last TBI (traumatic brain injury) in October 2013; I had concussions prior to this last one – it just happened to be the worst. I was 35 years old when it happened.

4. How did your brain injury occur?

I was enjoying an outing with my family. I stopped to take a picture of my children, and when I stepped back to get a better view, I slipped on some sort of substance on the marble floor. I bounced the back of my head on the floor a couple of times – and that was it.

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

I went by ambulance right away and had it checked. I was told that it was a concussion and to take some ibuprofen and that I should start feeling better. I followed the doctor’s recommendation, but it got worse instead of better. I ended up back in the hospital a week later for other issues associated with it. They advised me to go get it checked out further.

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

Other than a CT (or “CAT”; computerized tomography) scan, I did not have any other emergency treatment.

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

No. I am very fortunate not to have been 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)?

I did outpatient vestibular and occupational rehab.

How long were you in rehab?

I did this for a couple of months.

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

Oh wow! This is a loaded question. I have balance problems. I have vision issues. (I see double now.) I was diagnosed with symptomatic ADD (attention deficit disorder). I now suffer from depression. My personality has definitely changed – some good, some not so good. I try to maintain a positive outlook towards everything, but it is often a challenge. Before my medication was regulated (and before it was determined that I needed medication), it was much more difficult to function (from what I can recall). Oh yes, I have memory problems now too.

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

My life has changed. Is it better or worse? … I don’t know. I am no longer employed at the career I had for fifteen and a half years – that is scary. But, I get to be home with my children for now. I think it is all in the way I look at it. There are many things I will not be able to do anymore that I would have liked to. But, not many people are afforded the perspective and opportunity that I have either.

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

I miss the old me. I was very outgoing, loved to be around people, and was almost always happy. I could multitask better than many. I could solve problems and issues within seconds.

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

I was able to find out who my friends really are. I am able to help create the person I want to become. Most of all, I get to be with my children.

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

I dislike the headaches, double vision, depression, ADD, and the lack of understanding. Those issues that are personal – I can find a way to deal with them. The lack of understanding is the worst. It feels as though I am not listened to sometimes and, even if I am, I feel like people just don’t understand.friendsfamily

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

I have a great support-team that includes my family and dear friends. I go to counseling weekly, and my counselor is very counselorsupportive. I have been learning about being more mindful, which has also helped immensely. Recently, I have found that the TBI community is very supportive as well. Many times I think that I have not truly accepted my TBI, but I am getting there.

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

Yes, very much so. There are some relationships that do not exist anymore. This was mostly due to my ending the relationship. I had a new perspective after my TBI, and I do not feel I have time for people who will bring me down or whom I feel uncomfortable around. This was not usually the other person’s fault, but I am not the same as I was. I need my TBI to be accepted, or I do not need them in my life. My home life changed for sure. My children saw the incident, and I deal with that trauma every time we walk by a wet spot on the ground. My husband is a wonderful man and very supportive. I was the breadwinner though, and this has had to change. He is such a great man – he has not complained one bit. He supports me in all I do. I am fortunate to have my mom around me too, and she is a huge support; my dad was very supportive before he passed away in 2014. They all have encouraged me to continue creating myself.

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

As I stated before, I am not as outgoing. If I can, I often avoid situations in which there will be loud noises or too many people. This means that I don’t go to as many parties or social gatherings, and when I do, I do not stay like I used to. I don’t think I have as many friends as I thought I did.

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

My main caregiver is my husband. He is at home with me. My mom helps a lot too, especially with the kids when my husband is at work. I believe a caregiver helps when times are tough, and he or she encourages positive thoughts and actions. To me, a caregiver assists when needed, but is not enabling. A caregiver encourages independence.Gloden, Raquel (Rocky) 2 Survivor

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

My future plans … I would like to speak about TBI and help people to better understand. There are subjects that people do not talk about at all, and I would like to bring light to them and to help people understand that they are not alone. I would also like for others to understand the hardships that follow TBI survivors – even when other people cannot see them.

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.

I wish that I would have known when I was younger how concussions would have impacted me long term. I remember pushing it when I previously had concussions. They were not treated the same as now either, and I wish I knew then what I know now. Take care of your brain – it is the only one you will ever have.

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

My advice is to stay strong, but still allow yourself to cry. It is hard, but as long as the hard times decrease and the positive times increase, you are on the right track. Also, you are not alone. I know people may see you and think that there is nothing wrong, and they may even think it is all made-up, but the people who know you – the people who truly matter – know. And you know. And that is all that matters.

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

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Survivors SPEAK OUT! Jen Swartz

Survivors SPEAK OUT! Jen Swartz

presented

by

Donna O’Donnell Figurski

 

 

jen swartz Survivor1. What is your name? (last name optional)

Jen Swartz

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

Castleton, New York, USA     Passionate4Christ29@yahoo.com

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

My brain injury happened on June 8, 2000. I was 18.

4. How did your brain injury occur?

I was in a car accident. I was following a close friend to her boyfriend’s house. My car was T-boned by another car going 55-60 mph. My small car, a 1987 Toyota Corolla, was thrown across the street. Jen (the person I was following) said that my body was hanging out the door. She thought I was dead because there was blood coming out of my mouth. (To top it off, I also have congenital scoliosis and had to have a major operation when I was nine years old – a bone fusion in my neck to prevent the curve from progressing further. I had to wear a halo to restrict neck movement so the bone fusion could heal.)

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

I think it was probably when I was in a coma that people realized that I would have some cognitive problems.

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

I required a tracheotomy and a food tube. Also, my head was shaved for a reason. At the beginning, my brain was swelling, but, praise the Lord, the swelling went down. So, it was not necessary to take a piece of my skull off to allow room for the swelling.

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

Yes. I was in a coma for six weeks.

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)?

Yes. I did inpatient rehabilitation at Sunnyview Rehabilitation Hospital. This included speech, occupational, physical, and recreational therapies.

How long were you in rehab?Jen Swartz Survivor

I was in rehabilitation for seven months.

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

I have memory issues for certain! I have problems with concentration, focusing, emotions, and balance.

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

My life is MUCH better! I don’t remember eighteen years of my life, but from what I am told, I was very unhappy. Now I have God. He is my purpose! I am also blessed to say that I am engaged to an incredible man, who has an acquired brain injury (ABI). It is so great! We have known each other for three years, and we see eye-to-eye on practically everything.

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

Absolutely nothing!

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

I like that I don’t take anything for granted and that I am content with the way things are. God blessed me with a second chance at living, so I am trying to make the most out of everything in life.

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

I dislike the anxiety issues, the memory problems (which seem to happen quite frequently), and the migraines.

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

Yes! I was helped by Living Resources, where I participated in a group for people with traumatic brain injuries (TBIs). I was also helped by the Cognitive Group, which consisted of survivors working on different goals/strategies for different areas of life. The belief is that each individual can improve his or her life after a TBI. The group is run by neuropsychologists and counselors.

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

Yes. My mother and sister are very distant mentally from me, since they don’t seem to have the desire to want to accept the change that this injury made. I feel it may be caused by a little pride with them, considering the fact that I believe that I was quite an intelligent woman before my injury. Before my accident, I was accepted into Ithaca College, since I wanted to delve into the medical field in some way. My mother and sister do not work well with the cognitive change in me that the injury has caused, such as my not desiring to be with large groups of people or my forgetting things.

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

I believe my life has changed immensely. I used to have many, many friends and loved to be in large groups of people. Now, however, I don’t enjoy being in large crowds or in large groups of people. I get overwhelmed. I enjoy spending much more alone-time now, as well. I have even been taught how to crochet. I love doing crochet, especially when the winter months roll in.

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

I haven’t needed a caregiver, but I understand what it takes to be a caregiver, since I have had staff work with me on and off throughout the years.

Jen Swartz 218. What are your plans? What do you expect/hope to be doing ten years from now?

My future plans consist of buying a home with my fiancé through the Section 8 program. My fiancé will be my husband on May 27, 2017. I plan to continue working with Living Resources in the years to come, and my fiancé does as well.

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.

My helpful hint is to be patient. Remember: Slow and steady wins the race! Slow progress is key to amazing growth. Also, be open-minded to hearing from staff-members assisting to help you. If you listen to any suggestions, which may guide you to improve, you are being very wise in opening up your mind for possible progress.

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

Keep at it! Don’t give up! Also, you will grow if you listen to what “staff” suggest you do in order to improve! You can and will do it!
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

If you REALLY like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

Survivors SPEAK OUT! Ryan Stoltz

Survivors SPEAK OUT! Ryan Stoltz

presented

by

Donna O’Donnell Figurski

 

Stoltz, Ryan Survivor

Ryan Stoltz – Brain Injury Survivor

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

Ryan Stoltz

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

Eureka, California, USA     Ryan.Stoltz2014@gmail.com

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

My traumatic brain injury (TBI) happened on July 13, 1997. I was 17 years old.

4. How did your brain injury occur?

My TBI was caused by a car accident.

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

About six months

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

I was intubated at the scene. I was then given a trach (tracheostomy tube), a G-Tube (gastrostomy tube), and IVs.

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

I was in a coma for 23 days.

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 occupational, speech, and physical therapies. The physical therapy was to relearn how to walk. I was in acute physical rehab for nine months.

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

I have problems with balance, memory, speech, and perception.

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

My life is dramatically much worse. I have no independence.

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

I miss being able to go out and about on my own – without assistance from anyone. I also miss having my own family.

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

I don’t enjoy anything because every day is a struggle.

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

I dislike not being able to accomplish the dreams and goals I had for myself.

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

I was helped by my support system at home (my family) and by my support systems at my job and my day program.

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

My relationships at home were not affected because my parents have been a great support for me.

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

Stoltz, Ryan 2 Survivor

Ryan Stoltz – Brain Injury Survivor

My social life was affected greatly because I can’t go anyplace or do anything on my own. All my friends have grown and were able to move on with their lives. I feel like I was left behind.

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

My parents have been my main caregivers. Yes, I do understand what it takes. They help me with all my needs and wants in my home life. I also have a respite worker who takes me out into the community to do the fun things I like to do.

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

I want to be a mentor to others by telling them my life-story from before my accident to my accident and then telling them how the accident has affected my life.

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.

I would like survivors to be more willing to hear both sides of the story.

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

Don’t get angry at your situation. Take life day by day.

If you’d like to learn more about Ryan, please check out his blog.

Didn’t Give Up: Your Life Can Change in a Minute

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

If you REALLY like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

 

blog: http://didntgiveup.wordpress.com

Survivors SPEAK OUT! Ventura Manzanares

Survivors SPEAK OUT! Ventura Manzanares

presented

by

Donna O’Donnell Figurski

 

Manzanares, Ventura Survivor 070515 1

Ventura Manzanares – Brain Injury Survivor

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

Ventura Manzanares

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

Denver, Colorado, USA     venzar2238@gmail.com

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

I was poisoned by carbon monoxide between the ages of 4 and 9. The poisoning was from low-level dosages over time (five winters in Colorado). The rest of the year, I often played in the basement – near the pile of coal. Coal dust has arsenic. Furthermore, the heat pipes were wrapped in asbestos paper. I remember that, when the furnace was hot, little silver specks would pop off into the air. So, I got a triple whammy – carbon monoxide gas, arsenic dust, and asbestos dust.

4. How did your brain injury occur?

When I was one month old, I was abandoned by my parents. I was raised by my step-grandmother. I was sometimes beaten and sent to the basement to shovel coal to warm the house.

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

All through school, I remember being on-edge, fighting, and having rage blackouts. My brain would “spin.” (When you drive down the road and look at the wheels of the car next to you, every once in awhile, you get a glimpse of the hubcap. That was how my brain functioned.) I didn’t know at the time that I had brain injury. After many years, I just ignored it and tried to fake it until it passed. My brain injury wasn’t diagnosed until 2010 – during a check-up when I was living in a homeless shelter in San Francisco. Then I found the carbonmonoxidesurvivor.com website.

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

I was never treated until 2011, fifty-nine years after I was poisoned. I was given an experimental drug – Depakote (a mood stabilizer) – for one year. It worked immediately and had a lasting effect. I still feel good to this day.

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

No, but at times I did fall asleep. I remember waking up on the dirt in the basement. I also had the most painful headaches – cluster headaches on the right side of my head. My headache would last for days and take days to go away. (Cluster headaches last for periods of time. They are among the most painful types of headache known. Typically, they occur on one side of the head.). The headaches lasted from my teens into my mid-30s. I lost my life – my wife and daughter and also jobs – from those days.

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 have gone to a psychologist for most of my adult life, but the carbon monoxide poisoning was never addressed. My therapy now is EMDR (Eye Movement Desensitization Reprocessing) as well as binaural beats (non-musical sounds that can get your brain into a variety of desired states) and Hemi-Sync (an audio-guidance process that results in the left and right hemispheres working together) brain entertainment programs that I have installed on my smartphone. I can use them anytime I need throughout the day.

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

Tinnitus is a major issue in both ears – the ringing in each ear having a different frequency and volume. I suffer from throbbing and a sudden high-pitched ring that makes me deaf. I have to create a vacuum with my hands and pump out my ears to make it stop. I also experience nausea, dry heaves and a bubbling belly, and diarrhea – sometimes daily and several times a day. I get a feeling like I have an attached entity – like a heavy darkness – on the top of my head and on my face, throat, and chest. All these come in waves and last hours to days. I had always felt overwhelmed and stressed out. I could never keep a job for very long. Violence in my relationships and at work was my way of life.

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

As I’ve gotten older, I have eliminated as much stress as possible. But, my family (three ex-wives and two daughters) all hate me. In the 90s, I was a lot worse. I would wake up sick for hours at a time. It is not as bad now after the Depakote treatment.

Manzanares, Ventura Survivor 070515 3

Ventura Mazanares – Brain Injury Survivor

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

I missed out on everything. I don’t have many good memories of my childhood. I don’t remember Christmases, my birthdays, or Thanksgivings. School was a blur of time. I do remember getting beat up by bullies. My second marriage was horrible. I was out of control and violent. I was stressed to the maximum of my mind.

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

I like that I have gotten smarter and more calmed-down. I want to live now. Before, I just wanted to be dead. I’m happy for the first time in my life.

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

I dislike the tinnitus for sure. I get really tired of the throbbing and hearing the ringing. It wears me down. I also don’t like the nausea and the dry heaves, which have me gagging all the time.

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

Yes. It has helped to know what caused it – carbon monoxide gas. I’ve also been helped by the carbonmonoxidesurvivor.com website. I thought I was insane, and so did everyone else. I finally have a reason why I have had so many problems all my life. I was a bad person with a bad brain. But, I knew I was a good person. I just didn’t know how to do life, until now.

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

Yes. Everybody hates me. They won’t accept the truth about carbon monoxide poisoning. My family life is destroyed. I haven’t seen my youngest daughter for sixteen years.

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

I had no social life before because I was overwhelmed. I was like a leaf in the breeze – drifting and lost. Now I feel like getting out more. Also, I have met many wonderful, supportive people in the TBI (traumatic brain injury) networks on Facebook.

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

I have myself as a caregiver. I was employed as such when I was going to massage school in the early 90s. I did massage for twenty years. It gave some balance to my spinning brain.

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

I am in the process of writing a book about my life with TBI. I hope to enjoy my retirement and my pathetic social security money. Maybe I’ll be living on a friend’s ranch and be at peace.

Manzanares, Ventura Survivor 070515 2

Ventura Manzanares – Brain Injury Survivor

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.

Seek help immediately – no matter how little something may seem. Don’t take the “You’ll get over it” answer from anyone. You know what you need. Go get the answers, and save yourself.

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

Be gentle with yourself. Surround yourself with gentle, supportive people. It’s okay to do it alone sometimes. In not talking and dealing with others, we can hear ourselves. Go with your cravings – eat when you’re hungry and rest when you’re tired. Sometimes your body knows better than your mind.

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

If you REALLY like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

Survivors SPEAK OUT! Chelsea Rolph

Survivors SPEAK OUT! Chelsea Rolph

presented

by

Donna O’Donnell Figurski

 

chelsea rolph

Chelsea Rolph – Brain Injury Survivor

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

Chelsea Rolph

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

Toronto, Ontario, Canada

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

I have unfortunately had many traumatic brain injuries (TBIs). My first one happened when I was roughly 5. I have also had a concussion at 17 and two more at 18.

4. How did your brain injury occur?

My first TBI happened because I wasn’t wearing my seatbelt properly. Somebody hit my dad in a parking lot, and I flew out of my seat and hit my head on the seat in front of me. My later TBIs happened because of my favourite sport – basketball. You see, sometimes I get competitive. Sports were also my way of releasing any built-up anger I might have. I would let it all out on the court. One day, I was going for a ball, and I got an elbow in my temple. I blacked out for a minute, but I convinced my coach and the refs that I was okay. I kept playing until my coach noticed that something about me wasn’t right, and he took me off the court. After the game, I was taken to the hospital to get checked out. That was where they told me that I have a TBI and that I should relax – take time off from school and sports.08172116cc812061b05e6a42350f7002

My later TBIs were the ones that really affected me. I remember being in a basketball game (the second of the season), and we were down by 1 point with 44 seconds on the clock. I had a lane. I drove to the net, went up for my layup, and then darkness. I was out. I woke up lying underneath the net and feeling so confused. My coach and the ref were standing by me. I was immediately taken to the hospital. I remember that my eyes were doing weird things, such that the doctor called other doctors to take a look. I actually took time off from school that time. However, I was banned from sports for the rest of my life. I was told that, even with a helmet, I would still suffer from concussions.

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

I knew the injury was serious when I started blacking out. I was also really sensitive to light. I remember that the day after I hit my head, I woke up and I was blind. I opened my eyes, but all I could see was darkness. It was a really scary feeling. I called for my mom, and she took me back to the hospital.

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

I never had any emergency treatment. However, I was tested for anything and everything. I was given an MRI (magnetic resonance imaging), a CT (computerized tomography) scan, ECGs (electrocardiograms), an EEG (electroencephalogram), and a stress test. I had ECT (electroconvulsive therapy). I wore a heart monitor for a week. They did a sleep study on me, and I was given a neuropsychological test. Some of these tests gave me answers, and some did not.

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

I was never in a coma. I just had seizures and random blackouts.

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 was in outpatient rehab in Hamilton, Ontario. That hospital is the reason why I had answers. I went there for roughly one year. I was on a fast track because my goal was to discover if I was able to go to school. Basically I spent my summer in the hospital to do the tests and to get the results.

Chelsea Rolph 2 Survivor 061415

Chelsea Rolph – Brain Injury Survivor

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

I had a lot of problems. The one that affected me the most was the fact that I would pass out if I got my heart rate up. I was no longer able to play sports with my athlete-friends. I also noticed a huge shift in my personality. I used to be a very happy-go-lucky person. I wanted to be a Social Worker and help others. After my TBI, I became a huge jerk! I was always moody, I stopped caring about things, and I altered my personality so I wouldn’t let things affect me. I kept myself from getting attached to things I care about. I loved basketball, and in one second all of that was taken away from me. I still suffer from this. I have made myself an emotionless robot. I also stopped wanting to be Social Worker because I realized that if I couldn’t help myself, then I couldn’t possibly help others. I had to get bifocals. (I was having a hard time adjusting from up-close visuals to things far away.) I also had a hard time with my memory. I used to be in acting, and I could memorize a script easily. However, I was not able to remember what I read. My short-term memory was severely affected. My doctor referred to me as “an old computer.” (I had the information needed, but it took a while to get to me. I kept buffering.) I lost my abilities to multitask, to focus, and to sit still. My fine-motor skills suffered. Sometimes I have a hard time understanding what has been said to me and how to answer. I also had difficulty sleeping because I was having mini-seizures in my sleep.

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

Has my life changed? Of course! Is it better or worse? Who knows? I have suffered, and I have dealt with things on my own that people shouldn’t. I remember coming home from school crying to my mom because all of a sudden I was unable to do the things I used to do. In contrast to the thoughts of many people, I was still able to complete University. I might have just gone to college (like I should have), but now I can proudly say I have my degree! That might not have happened without my TBIs because back then I wasn’t out to prove anything. Do I now have a bigger debt than what I should have? ABSOLUTELY! However, I will never regret it. My life isn’t “better” or “worse” than it originally was, but I feel I have been very fortunate.

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

I miss my friends. All of my friends are athletes. Taking away my ability to be active took me from my friends. I was no longer able to do the things that I normally did. My friends kept playing sports, and I kept sitting on the sidelines. It wasn’t easy, but I found the ones who are able to understand that part and still be by my side. I really cherish that.

I also miss my ability to always be willing to go out and meet new people. I get exhausted a lot more easily than I used to. Before, I would never be home. I would always be working. If not, I would be playing a sport, and if I weren’t doing that, I would be with my friends doing fun, crazy things! My fiancé is a DJ, and a part of being the DJ’s significant other is going to his gigs and socializing with the other significant others. I still love doing that, but now I find it more exhausting than what it should be/used to be!

I would like to be able to go back and play sports the way I used to, but now I am a coward. I am scared of playing. I am scared of taking two steps backwards. I have moved on from what I wasn’t able to do, and I am now trying to find other things that I enjoy. I am slowly trying to get back into the shape I used to be in five years ago.

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

I enjoy the fact that I got to start over with a blank slate. I was able to take a step back and really see what and who made me happy. I love that my fiancé was in my life when I was first dealing with my issues. He has never left my side. I love that I was able to prove to doctors, friends, family, and the faculty at McMaster University that, despite what they thought, I could graduate without the accommodations I should have had. I am now out living my life. I am doing what every recent graduate does – looking for a full-time job, hopefully buying a car, and looking for an apartment. I am doing everything that most people do, except with an invisible problem.

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

I don’t like the fact that I lost something that I loved, which, I previously mentioned, was my love for basketball. I faced loss, even though nobody had passed away. I felt as though something I had strongly cared about was taken away from me. I also don’t like the fact that I have an invisible illness. I don’t want to make excuses. When I am having a problem with something, I don’t like to say, “I have had a concussion.” I don’t promote that about myself. I hated that I was so close to potentially receiving the grade 12 Athlete of the Year award and that it was taken away from me without a fighting chance.

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

A couple things have helped me on my journey to success. My rehab clinic helped me a lot! It helped me by giving me answers to the problems I was having. I don’t normally like talking about my feelings, but I do enjoy talking to one of my pets. My mom, my sister, and my fiancé have also helped me. The one thought that I always have is “My TBI happened. I can’t dwell in the past, and I can’t make excuses. What I can do is do what I love. If I have a challenge, problem solve. What can I do to make this work for me?” I realized that I shouldn’t have to give up on something because it is tough. I have to come up with my own solutions to deal with that problem.

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

Besides the fact that I am moody, my TBIs haven’t affected my relationships too much. It was tough dealing with my changed memory. If my parents asked me to do something for them, there is a good chance I would forget. When my boyfriend and I were originally dating, I hated that I had to ask him personal questions multiple times because I couldn’t remember. Other than that, not much has changed.

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

I have mentioned before about my social life. I felt like I had lost my friends because of my inability to play sports alongside them. I have become more of an introvert. I like coming home and relaxing. I get overwhelmed socializing for a long period of time. I need breaks from people – I need “me” time.

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

My mom was my main caregiver. It must have been really tough on her to have her baby daughter come home crying every day because of frustration. My mom has been my rock. She has been by my side every step of them way. I don’t know what I would have done without her. She was the one who supported me when I decided to go to University without any help, and she was there to see me walk across that stage.

Chelsea Rolph 1 Survivor 061415

Chelsea Rolph – TBI Survivor – Graduate McMaster University

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

I am always wondering what I want to do with my future. I would love to inspire some people. I have always thought about working at a juvenile detention centre. I would love to talk to the kids and show them that they can prove others wrong – “Don’t let others tell you who you are or who you’re not, and don’t let them control your future.” I want to write about the power of “Yes” and “No.” Other than that, I would love to get married to the love of my life and maybe start our own family!

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.

I want others to know that something good can come out of this situation. I really had a hard time with this. I ran into one of my former high school gym teachers, and I was told that, because of me, the rules around brain trauma have been altered at the school level. The School Board has created guidelines with steps to follow if a student has a brain injury. I work at a recreation centre teaching sports to kids, and I walked out of the gym and saw the guidelines posted. A student must have time off, and when the student returns, he or she is to have a private room with no distractions. Even though I had to go through my TBIs with no support from my high school, except for some of my teachers, my journey helped create change for others.

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

Never lose hope! You are only as strong as you feel. Keep pushing forward, and make the best of every day. Seize the moment and life with no regrets. Things happen. If we dwell on the problems, we will never give ourselves room to grow and improve. If I decided not to go to University and just take the year off, I might not be in the state of mind that I am in today. I also might not have met the people who took me “across the ocean.” You are the main character in your life-story. You get to choose the paths you take. Don’t let barriers get in the way of your happiness. If something doesn’t work for you, make it!

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

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