TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘brain injury survivor’

Caregivers SPEAK OUT! . . . Heather Sivori Floyd . . . Caregiver for her son, TJ

 

 

Caregivers SPEAK OUT!

Heather Sivori Floyd (caregiver for her son, TJ)

presented by

Donna O’Donnell Figurski

 

Heather Sivori Floyd – caregiver mom to her son, TJ

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

Heather Sivori Floyd

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

Oldham County, Kentucky, USA

3. What is the brain-injury survivor’s relationship to you?

He (TJ) is my son.

How old was the survivor when he/she had the brain injury?

TJ was 7 years old.

11 TJ Floyd

TJ – Brain Injury Survivor – bicycle accident

What caused your survivor’s brain injury?

TJ was riding his bicycle when he wrecked into the back of his brother. He flipped over the handle bars and hit his head on the concrete. He went to “sleep” and never woke up until days after his emergency open brain surgery.

4. On what date did you begin care for your brain-injury survivor?

April 21, 2010

Were you the main caregiver?

Yes

Are you now?

Yes

How old were you when you began care?

Age stinks. I’d rather not discuss it. LOL!

TJ and Mom Heather Sivori Floyd

TJ – Brain Injury Survivor & his Mom, Heather Sivori Floyd

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

Yes – my three other children. I was also pregnant at the time.

6. Were you employed at the time of your survivor’s brain injury?

Yes

If so, were you able to continue working?

Yes – part time from home.

7. Did you have any help? Mother-in-Law

My mother-in-law moved in to help with my other children so I could care full-time for TJ with his therapy and doctors.

If so, what kind and for how long?

Well, she is still here.

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

Immediately

9. Was your survivor in a coma?

I’m not sure of the medical term, but he was unresponsive until several days after his brain surgery.

If so, what did you do during that time?

I slept beside TJ in a chair. I was three months pregnant and heartbroken at the fear of the unknown. What was it they called it? . . . Ah yes, “the new normal.” I was trying to figure out what that meant. You don’t actually “get it” until years later.

14 TJ & Mom Heather Sivori Floyd copy

TJ – Brain Injury Survivor & Mom, Heather Sivori Floyd

10. Did your survivor have rehab?

Yes

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

Physical, occupational, and speech therapies; also, hippotherapy (the use of horseback riding to improve balance, coordination, and strength)

How long was the rehab?

TJ still goes to therapy.

Where were you when your survivor was getting therapy?

With TJ

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

brain-injury-imageEverything. TJ’s brain bleed damaged the whole left side of his brain and parts of the right. He was left with severe impairments, specifically in speech, language, memory, and cognitive function. He has safety issues. Because of attention, safety, and balance issues, he has trouble walking without hands-on help constantly. He also has memory problems, speech problems, vision problems, physical issues from having hemiparesis (weakness on one side), and a lot more.

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

Things that mattered to me prior his accident are non-issues to me now. I often times feel I can talk with doctors and therapists better than I can with most people my age. It can be lonely, difficult, and frustrating at times to find common connectors in my personal relationships with friends and family. Some weeks are packed full of appointments. I’m drinking so much coffee I think my system will crash. Just this past week, I knocked out four appointments in one day. The most I’ve done in one day has been seven.

Is it better?

I would say yes – my life is better. Even though this is the most challenging task of my life, my son is innocent, happy, and laughs a lot. I believe having the privilege to care for my child, who is special needs, has been the most rewarding love one can experience. The impact special-needs children make are life-long. You learn so much through them in how they view the world.

Is it worse?

No parent ever wants this for his or her child. That being said, my life is better because of the profound true joy my son has brought me. The worst part, I would say, is having struggles that are hard to overcome. Watching him struggle is hard. I do whatever I can to help him when this happens. Also, the stress of future planning is scary and overwhelming.

18 TJ & Mom Heather Sivori Floyd copy

Heather Sivori Floyd & her son, TJ

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

Our conversations. Most of the time, our conversations now are basic – food, eat, play a game, etc. I miss those conversations with my child that went beyond basic needs.

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

Oh gosh, a child like TJ changes you in a profound way. The love you have in your heart for your child and others like him or her is something that is hard to put into words. I want to protect all of them forever. The world is full of evil people who would take advantage. I also enjoy trying to help others – to make it easier for the family who comes after us. There will always be another family. I’ve also learned to let the little things slide because, at the end of the day, they are just that – little.

15. What do you like least about brain injury?

Everything. It’s unrelenting and nasty. It takes a lot and rarely gives anything back.

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

Yes – TJ is happy. It is hard to justify my being sad or my crying all the time when he is happy. He lives in the now – not for tomorrow or the day before.

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

1-divided-path-tracie-kiernanYes – especially my personal friendships and my relationships with family. I think we are on different paths in life now. While they talk of work and social events, I am constantly thinking What can we do to make it better for TJ and others going through this? My closest friends are now the caregivers and survivors I’ve met locally. We work together locally to make a positive change for the brain-injury community. I also work with an amazing team of ladies who help me run two support-groups for survivors and caregivers. I started my first one seven years ago. I was scared after TJ’s brain injury, and I needed to know I was not alone. I needed hope. The groups grew to over 30,000, and the rest is history. The friendship we have is unbreakable. Shout-out to my amazing admins and friends: Melissa, Shauna, Margie, Mary, Michael, Eddie, and Alex. Love you all! We’ve met many who have inspired us in this journey.

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

Um, what social life?! Seriously, I have no social life. It’s too hard to connect with others.

19. What are your plans?

My #1 plan is finding the best long-term situation for TJ that will ensure the best care he can have when we can no longer do so. Personally, I also plan to continue making a difference locally. We have several projects we are working on, and I have some more ideas to help. I ALWAYS have an idea. I’m always thinking big. Nothing brings me greater joy than helping others. It is important for families to know they aren’t alone and that people care enough to try and make it better. I try to do my part because of my son and the many we have met.

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

I hope to still be laughing and loving the small joys in life with TJ. Hopefully, we will have made a big impact locally and beyond for the brain-injury community.

20. What advice would you offer other caregivers of brain-injury survivors? Never Give Up

Never give up. Let the small things go. Love deeply, and give your all. If you don’t, one day you will wish you had. Be the voice for your loved one. Never let “no” be an obstacle; there is always a way. If the door closes, kick it open. Most importantly, hang on when the days are hard and you feel you cannot go on. You can, and your survivor needs you to. Connect with other caregivers so you don’t feel like you walk this path alone – because you don’t. There are many who walk it with you daily

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

I think I’ve said what’s important for caregivers to know.

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you 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. I don’t care!

Feel free to “Like” my post.

Advertisements

SPEAK OUT! . . . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . Shelley Taylor and her daughter, Taylor Trammell (survivors)

SPEAK OUT! Faces of Brain Injury

Shelley Taylor and her daughter, Taylor Trammell (survivors)

presented by

Donna O’Donnell Figurski

Brain Injury is NOT Discriminating!

bigstock-cartoon-face-vector-people-25671746-e1348136261718It can happen to anyone, anytime, . . . and anywhere.

The Brain Trauma Foundation states that there are 5.3 million people in the United States living with some form of brain injury.

On “Faces of Brain Injury,” you will meet survivors living with brain injury. I hope that their stories will help you to understand the serious implications and complications of brain injury.

The stories on SPEAK OUT! Faces of Brain Injury are published with the permission of the survivor or designated caregiver.

If you would like your story to be published, please send a short account and two photos to me at neelyf@aol.com. I’d love to publish your story and raise awareness for Brain Injury.

Shelley Taylor and her daughter, Taylor Trammell (survivors)

Taylor, Shelley survivorValentine’s Day 2010 would turn into a complete game-changer – a day we will never forget. It’s a day I’ve documented so, if the day comes when my memory is gone, I can always reflect back on God’s goodness and mercy. Following is my account of the night we were poisoned. God provided the most beautiful second chance.

We were experiencing a “Texas Winter” and had received about six inches of snow. We had been without power for three days. On day 3, we ran a generator in the driveway, near our garage. The garage door and windows were open. The Fire Chief later told us that, since it was so cold and there was no wind, the carbon monoxide gas probably just settled. Instead of blowing away, it just crept back into the house via the eaves.

Trammell, Taylor Survivor 050617

Taylor Trammell – Brain Injury Survivor

Taylor (my daughter; 13 at the time) and I had gone to bed. She told us that someone had called her name and she was trying to get up to see who it was. She got up, fell face-first into the wall, collapsed and crawled out of her bedroom, shimmied up the wall, and collapsed again. The thud of Taylor falling on the concrete floor is what woke me up. Charlie (her dad and my ex-husband) heard this as well from the living room. We went to the hallway and found Taylor passed out and lying on her face. We couldn’t get her to respond! Charlie sent me for the flashlight that was by my bed. On my way, I felt like I was not right either. I got the flashlight and ran back to the hall so I could get to Charlie to let him know I wasn’t OK. I knew that if I collapsed in the bedroom, he wouldn’t know to come for me.

Everything was spinning out of control, and I was experiencing the worst feelings I had ever had! When I turned the corner to the hallway, I collapsed face-first (without using my hands or arms to brace myself). I fell onto the metal flashlight and severely cut my forehead. I told Charlie I felt blood running down my face. He looked at me with the flashlight and said he had to get me to the hospital! My head began to pulse blood. Taylor, I, and the walls were covered in blood. Meanwhile, Taylor was in and out of consciousness. I was having convulsions and banging my face into the concrete floor. Charlie then called 9-1-1.

First to respond were the police. Charlie told them we had no power, so they used their flashlights. They immediately saw my blood and the bloody handprints in our hallway, and Charlie had my blood on him as well. Immediately they accused Charlie of a crime. Shortly thereafter, the fire department arrived, and luckily Charlie knew one of the firefighters who quickly came to Charlie’s defense. Charlie told the Fire Chief of the generator, and immediately the Chief went to the truck to get the carbon monoxide detector. Even at the entrance to our driveway, the readings on the detector began to rise quickly. The readings went higher as he got closer to the house. Upon reaching the door, he called for his crew to exit the house and got Charlie, Taylor, and our dogs out as well. Paramedics were left inside with me to get me stable enough for transport to the hospital. Eventually I left by ambulance, and Charlie and Taylor left in Charlie’s truck.ambulance6

At Mansfield Methodist Hospital, Taylor’s and my blood gases were checked. They were found to be “through the roof.” We were then transported to Dallas Methodist to use their hyperbaric chamber. First, my head injury was closed up with fifteen stitches, and I had to have a CT (computerized tomography) scan to make sure I was transportable. Off we went in the ambulance. Upon arriving at Dallas Methodist, a doctor explained the procedures for going into the hyperbaric chamber. (I was trying to comprehend all of this while the carbon monoxide was still doing damage to my brain!) We found out that the family that had just been in the chamber before us had all died, except the father – not comforting!

When we came home, my sister Kimberley moved in for approximately a month. Physically, my head was healing, but, mentally, I was left with a traumatic brain injury. I literally started over with kindergarten flashcards (I would look at an apple and say “library”), and my friends and family completed most of my sentences. My neurologist was a great comfort to me as I struggled with memory and cognitive skills.

My neurologist also told me that people don’t survive what we went through. He said they really don’t know how to treat me. He said carbon monoxide goes into your brain and destroys whatever it attaches to, and we have no control over what functions are affected.CO-Danger

Taylor and I struggle daily, but some recovery continues every day for both of us. Taylor is young, and healing has come differently for her. Memory and migraines are big battles she continues to face.

I’ve come a long way, but I continue to deal with balance, breathing, vision, and memory. It seems I have fallen more times than I’ve stood. By far, my greatest challenge is breathing. Every day, at some point I struggle to breathe. Coughing has become my norm.

Memory LossMy memory is horrible at times, and I’ve lost so many precious memories. Taylor and I have a routine when it comes to trying to remember things. We just look at each other and ask, “Did we have fun?” The one who remembers says to the other, “Yes, we had fun!” That’s all that matters.

What a Valentine’s Day! Taylor saved us by miraculously waking. We endured my bloody head injury which required fifteen stitches, a concussion, a CT scan, blood gas analyses, ambulance rides, and approximately three-hour “dives” in a hyperbaric chamber. (And, we’re both very claustrophobic!) Nothing says “I love you” like a brain injury.

To be alive is amazing, in whatever capacity! God is good – no, great!

 

Thank you, Shelley Taylor and Taylor Trammell, for sharing your story.

Surviving Brain Injury - Stories of Strength & InspirationNOTE 1:

Taylor Trammell and her mother, Shelley Taylor, are contributing authors in “Surviving Brain Injury: Stories of Strength & Inspiration,” edited by Amy Zellmer. Shelley and Taylor’s story is titled, “Our Story of Poisoning — and of Grace.” It can be found in Chapter 75 on page 299.

NOTE 2:

My story, “Nightmare in the Disability Lane,” can be found in Chapter 29 on page 114 of the same book, “Surviving Brain Injury: Stories of Strength & Inspiration,” edited by Amy Zellmer.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you 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. I don’t care!

Feel free to “Like” my post.

Survivors SPEAK OUT! Taylor Trammell

Survivors SPEAK OUT! Taylor Trammell

presented 

by

Donna O’Donnell Figurski

Taylor Trammell – Brain Injury Survivor

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

Taylor Trammell

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

Grand Prairie, Texas, USA     taylor.dot24@gmail.com

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

I had my brain injury on February 14th, 2010, at age 13.

4. How did your brain injury occur?

Carbon monoxide poisoning

(Donna’s note: The story of the poisoning of Taylor and her mother, Shelley Taylor, will be published later on this blog under “Faces of Brain Injury.”)

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

The problem was apparent the night we were poisoned.

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

I was put into a hyperbaric chamber.

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

No

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?

No

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

Afterward, I started to sleep poorly or not to sleep any at night. I also suffer from horrible migraines. Sometimes, when I hold on to something, I just drop it. But overall, it’s a mystery because every day could be something different.

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

Now I have sleeping problems, and I get horrible migraines. But, I can’t really say if my life is better or worse. I mean, it’s not fun on some days, but at least I have a life to live.

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

I miss being able to go to a concert or an event and not having to turn away from the stage or to have my boyfriend hold my head in his chest to block the light. I miss being able to talk normally and not forget what I was saying. Most of all, I miss not being able to sleep.

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

I enjoy just living in general. I mean that because it was such a close call to be living. God saved me, so I will live my life to the fullest and not let my TBI (traumatic brain injury) hold me back.

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

Not sleeping and my migraines

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

Yes. I’ve been helped by knowing that God saved me and that He is always right beside me.

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

I’m not sure. Sometimes it’s hard for people to understand my migraines or that I’m grumpy from not sleeping.

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

Yes, it has. I realize that life is short, so I try to do everything I want to do. I have fun. I love music and going to concerts, but that has changed due to the lights.

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

N/A

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

I am graduating in a few weeks with my degree in ASL (American Sign Language) Interpreting. I plan to become an interpreter and to be married next year and start our lives.

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.

No matter what has become the new you, you have to remember that there is a you because God saved you. I had to accept who the new me was and just roll with it. I mean, there wouldn’t be a you if you were not saved. SO, accept it, and learn what you need to do to live your life every day.

Taylor Trammell – Brain Injury Survivor

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

Just remember to be thankful, even in the hardest times. Life isn’t easy, and it never will be. Be strong and be supportive to everyone because you never know what the other person is going through. I know a lot of people in my life who have no idea what I go through every day, so just be strong and remember God is with you.

 

 

Surviving Brain Injury - Stories of Strength & Inspiration

Surviving Brain Injury: Stories of Strength and Inspiration

NOTE 1:

Taylor Trammell and her mother, Shelley Taylor, are contributing authors in “Surviving Brain Injury: Stories of Strength & Inspiration,” edited by Amy Zellmer. Shelley and Taylor’s story is titled, “Our Story of Poisoning — and of Grace.” It can be found in Chapter 75 on page 299.

NOTE 2:

My story, “Nightmare in the Disability Lane,” can be found in Chapter 29 on page 114 of the same book, “Surviving Brain Injury: Stories of Strength & Inspiration,” edited by Amy Zellmer.

 

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.)

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

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

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

Survivors SPEAK OUT! Jordan Emerson

Survivors SPEAK OUT!  Jordan Emerson

presented by

Donna O’Donnell Figurski

jordan-emerson-2

Jordan Emerson – Brain Injury Survivor – Race Car Driver

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

Jordan Emerson

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

Windham, Maine, USA

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

I had my brain injury at 13 years young.

4. How did your brain injury occur?dan Emerson

Jordan Emerson - Brain Injury Survivor - Race Car Driver

Jordan Emerson – Brain Injury Survivor – Race Car Driver

I was driving a fully-safety-equipped racecar.

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

When I was unconscious

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

I was given a trach. I had emergency procedures for a cracked left hip, brain stem, seizures, a crushed left arm, paralyzed vocal chords, and paralyzed stomach.

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

Jordan Emerson - Brain Injury Survivor

Jordan Emerson – Brain Injury Survivor

Yes. Almost 3 months

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 have occupational and physical therapies as an outpatient. I was also helped by a speech-language pathologist.

How long were you in rehab?

I’m still attending OT and PT as an outpatient.

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

I still have awful trouble going to the bathroom. Being in crowded areas makes me tired. (It’s “overstimulation,” but instead of overstimulation, it feels like a “draining of my energy.”)

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

My life is neither better nor worse. It’s just different.

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

I miss being able to run around outside with my dogs.

th-112. What do you enjoy most in your post-brain-injury life?

I like that everybody seems to offer to help more often.

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

I dislike that I’ll be thinking so hard about something, and then, *poof* it’s gone.

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

Talking with other survivors has helped.

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

Before I developed a filter, I said things to friends, and over time, those friends disappeared.

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

Yes. I have lost friends.friends

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

My mom is my main caregiver. I’m thankful for her every day.

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

I plan to be driving, living in my own apartment, married, etc.

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.

Hard work really does pay off.

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

Jordan Emerson and Mom & Dad

Jordan Emerson – Brain Injury Survivor and Mom & Dad

I owe a lot of my journey to my loving parents – I couldn’t have done this without them. I ♡ them!
Please feel free to reach out to me (#Believe). I enjoy helping whenever I am able. Believe!

 

 

 

(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 SPEAK OUT! Survivors Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

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

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

Survivors SPEAK OUT! Richard Schooping

Survivors SPEAK OUT!    Richard Schooping

presented by

Donna O’Donnell Figurski

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

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

Richard Schooping

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

Orlando, Florida, USA     apebblethrown@gmail.com

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

I was 44.

4. How did your brain injury occur?

A mysterious brain infection from AIDS attacked my entire brain and spinal cord.

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

My functions in my mind and body began to slow down. Typing and talking slowed to zero over the period of a month. I watched it happen from a shattering mirror of identity.

6. What kind of emergency treatment, if any, did you have?patient-in-hospital

I was put in the hospital on liquid experimental medications to slow the attack of the mysterious virus. Also, I was on oxygen therapies to raise my blood-oxygen level. Doctors had never seen anything like this. I was also informed I had aphasia.

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

No. I was awake and asleep intermittently for 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 was in a nursing home for three weeks of intense rehabilitative therapy. Then I had occupational therapy for as long as insurance would cover it – about three months.

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

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

I seemed to lose everything. I had no idea who I was during the infection. I lost my ability to swallow, my speech functions, and all motor functions. I atrophied so quickly over a few weeks that I became immobile and rail thin. Bladder control also became an issue, as well as balance and perceptions. But, I am blessed – most of everything has returned. I also worked incredibly hard to survive and shine for others.

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

My life is truly hard, but it’s also amazing. I am not able to work. I take care of my mother, which could not have happened without this stroke. My days are unpredictable – my energy can wane quickly without warning. Arthritis and neuropathy and HIV dementia fill my days, as well as domestic duties while my husband works. I am creative daily in some aspect. I add inspirations to Facebook. I am grateful. I know I am more than this body. I am an eternal spirit. I feel aware and know that I am more.

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

I miss writing music, freedom of body and mind, fluidity of speech, my handwriting, and self-reliance.

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

My compassion has deepened and expanded in my life in ways unimagined. I embrace and deepen into being a source of inspiration and hope for others. I enjoy volunteering; creating digital pieces of heART; having quality time for my sister, Laurie; and having time with my cat, Autumn. I also enjoy singing.

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

I dislike feeling caged in my body, not being able to do what I once could do effortlessly, and my speech and motor functions being so affected, but I have faith.

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

Several things have helped me: meditation, Qi Gong, chanting, forgiveness, singing, playing, and serving others.

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

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

Yes. I feel it confused and bewildered all of my friends. Many fell away, and I do not blame them. This is my journey. My marriage to my amazing husband is withstanding the strain this stroke has brought into our lives. My family is very supportive. We have all become stronger and more caring people.

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

Yes. My social life is only what I make happen now. It still takes effort to talk and think, but many new friends have opened their hearts to me and accept me as I AM.

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

My husband, Cal Kalaf, is my main caregiver. I do know what caregiving means. I understand in that I helped three previous husbands pass over from AIDS.

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

"From Suffering to Soaring" by Richard Schooping

“From Suffering to Soaring” by Richard Schooping

I will share my story of hope through my first book, “From Suffering to Soaring.” I will offer insights and strength to as many souls as possible. I plan to tour and to write more books. I will finish my second book, which shares both my and my husband’s perspectives of the stroke. I hope to write more albums as well. I want to make the most of my time while I am still here.

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 judge the stroke or disease. Things happen. There are huge patterns at play. Respond with caring and self-love. Nutrition is important. We are what we eat. This is good advice for all of our senses.

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

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

Find a creative outlet.

Get out in nature more.

Simplify your life.

Honor the entire process.

When emotions rise and attempt to capsize you, become aware of your breath and breathe through them.

Emotions are only energy.

Energy is neutral.

Look into mindfulness meditation.

Keep the faith.

Don’t blame.

Do whatever calms you.

This too shall pass.

Share your story.

 

(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 SPEAK OUT! Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

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

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

SPEAK OUT! . . . . . . . . . . . . . Guest Blogger . . . . . . . . . . . . . . . Ed Steeves – Standing Still

Standing Still

by

Ed Steeves

presented

by

Donna O’Donnell Figurski

 

Boy Blogger thNo matter how great it sounds, we can’t go back. No matter how much we may want to, that bridge has burned. The past has passed for a reason. We need to accept that it is over. We can only take the lessons we’ve learned.

Now we have a choice, since we can’t change the past or return to it. We can’t get the past back and never will. So, the decision that we have to make is Will we move on into the future, or will we simply stand still?k20874676

I, for one, will go forward with my life. I have decided that, somewhere ahead, there is something better to find. Because, if we just stand there and stare at what’s dead and gone, we will surely lose our mind.

The thing we fail to notice at times is that, no matter how amazing the past was, the future is better. The past, sadly, is occupied only with our memories, and it’s our prison. Only in the future can we all be free.

Ed Steeves - Survivor

Ed Steeves – Survivor

It’s OK to take some time to reflect – to forgive and move on. I’ve finally given up on all that’s there in the past.

But remember that life is still alive in the future, and we are never certain how long it will last.

Thank you, Ed Steeves.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

(Clip Art compliments of Bing.)

(Photos compliments of Ed Steeves.)

 

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you 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. I don’t care!

Feel free to “Like” my post.

 

 

SPEAK OUT! . . . . . . . . . . . . . . . . Faces of Brain Injury Charles Ross

SPEAK OUT! Faces of Brain Injury Charles Ross  (survivor)

presented by

Donna O’Donnell Figurski

 Brain Injury is NOT Discriminating!

bigstock-cartoon-face-vector-people-25671746-e1348136261718It can happen to anyone, anytime, . . . and anywhere.

The Brain Trauma Foundation states that there are 5.3 million people in the United States living with some form of brain injury.

On “Faces of Brain Injury,” you will meet survivors living with brain injury. I hope that their stories will help you to understand the serious implications and complications of brain injury.

The stories on SPEAK OUT! Faces of Brain Injury are published with the permission of the survivor or designated caregiver.

If you would like your story to be published, please send a short account and two photos to me at neelyf@aol.com. I’d love to publish your story and raise awareness for Brain Injury.

 

Charles Ross (survivor)

Ross Jr., Charles Survivor 112415 copy

Charles Ross Jr. – Brain Injury Survivor

It has been just over thirty years since I had my traumatic brain injury (TBI) in November 1985. I remember nothing of the accident at all. What I say of the accident is what I learned after the fact. I had the paddles put on me before I got on the helicopter to fly to the larger hospital in St. Louis. The doctors even told my parents they were removing me from Intensive Care to make room for someone who might live. I was in a coma for fifty days. I spent over ten months in the hospital. I was in a wheelchair for one and a half years. And, I had seven summers of surgery to make it to where I can now walk with a cane.

I have severe memory problems. My short-term memory was, and still is, bad. I had been having what I called “spells,” during which I would get a feeling like a chill in my spine. My parents noticed the staring while I was in the hospital. The doctors took me off seizure medicine because they did not believe I was having seizures. I know those spells increased in frequency after that. I could go days with no spells, but other days, I could have hundreds. They usually seemed to last a few seconds, but Mom thought they sometimes lasted longer.

As the spells increased, the feelings I had changed too. I began to notice a feeling like I needed to have a bowel movement, but I never did that, I remember. I would get extremely hot, and sometimes the sweat would just pour out of me for a few seconds. Mainly at night, I would wake with a spell and have a horrible taste in my mouth. After I got my license back, I sometimes had these spells while I was driving. I could have them in class or while I was watching TV or walking or sleeping – it did not matter. I never noticed anything that triggered them. Four years after the accident, in my sleep on New Year’s Eve night 1989, I had a tonic-clonic (grand mal) seizure. It was determined that the “spells” were petit mal seizures. Treatments finally began for traumatically incurred epilepsy, which the doctor finally said I had.

OLYMPUS DIGITAL CAMERA

After I started on medication, the spells decreased dramatically. I would still have one, and my neurologist would increase my dose. That helped for some time, but the spells never stopped completely. Even though I had severe memory and physical problems along with the seizures, I managed to get two Associate Degrees over nine years. However, because of my memory problems, I failed to get my Bachelor’s Degree. I started working with my last degree, but the stress was too powerful to maintain the job. I had many jobs though, mainly contract jobs without benefits.

I began to have blank spells. Maybe I had them before, but I never remembered them or realized it. Why I knew I had them was because I was driving again and I would have an accident in which I hit someone in the back end. I would come out of any blank spell immediately, but I never remembered what had happened, other than that I hit someone. I figured that they hit the brakes quickly in rush-hour traffic and I could not stop.

Over the years, I would have an accident every year or two. Finally, I realized that, before each accident, I had that strange feeling also. So, then I knew what the real cause of the accidents was. After fifteen years of work, I lost my job. I moved in with my parents again. The new neurologist started me on a second medication, and that helped. It did not stop the spells though.

Ross, Charles Survivor

Charles Ross Jr. – Brain Injury Survivor

I moved again and got another neurologist. She put me on two more medicines. One was the same brand, just a different strength. That medicine with such a heavy dosage made me have mood swings sometimes. Altogether, it was over twenty-two years after treatment began and twenty-seven years after the accident before the right mixture was found and I felt in control again. I moved back in with my parents again in late 2014. I helped my parents the best I could with my three hospital stays and two operations. I drove my dad for cancer treatments before his death in September 2015. I am with my mom now. We help each other during the grieving process.

I hope my story serves as a source of strength, encouragement, and determination for others with TBIs to never give up. I was never supposed to live! If I did, they said I would be no more than a being in a chair, unable to do anything for myself.

Never Give UpI am writing my story, I drive, I went to college, I got two Associate degrees, and I worked for fifteen years. There is so much more, but anyone who reads this story should know that anything is possible. You may not accomplish as much as I did, or you may accomplish more. Just know that you should never give up on yourself. Feel proud of your body. If they had been in your shoes, they could never have done what you did, and that is to survive! Be proud!

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you 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. I don’t care!

Feel free to “Like” my post.

 

 

Tag Cloud

Surviving Traumatic Brain Injury

TBI - Survivors, Caregivers, Family, and Friends

Ten Thousand Days

The long and winding journey after loss

Wordcrafter9's Blog

Just another WordPress.com weblog

Tripambitions

It contains the world best places and things.

No memory of the day that changed my life

My name is Michelle Munt and this is my story about surviving a brain injury and what I continue to learn about it. This is for other survivors and their loved ones, but also to raise awareness of what can happen to those in an accident. This invisible injury too often goes undiagnosed and it can be difficult to find information about it. I will talk about things that have helped me as I continue to recover and invite others to see if it works for them too.

Everything and nothing. GM1123 😊

Bienvenue. I’m thinking this is the spot where I am to write a witty, flowery personal section that pulls you in......I got nuthin’

Teresa472002's Blog

Just another WordPress.com site

The Concussion Blog

An Education and Communication Outpost from an Athletic Trainer's Perspective

Howdy Hydrocephalus

Understanding my unique gyroscope

Recoveryofthemind.com

Head Injuries Change Everything

Sheri Lawrence de Grom

From the literary and legislative trenches.

With Grace ALWAYS

...doing my best to live a life of grace...

Mild to Moderate

TBI - Survivors, Caregivers, Family, and Friends

Hope for Trauma

TBI - Survivors, Caregivers, Family, and Friends

Lisabeth Mackall

Finding our way back

%d bloggers like this: