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Survivors SPEAK OUT! . . . . . David Figurski . . . . . . . . . . . . . . . 20-Year Post-Injury Anniversary

On April 8, 2014, Donna published my Survivor SPEAK OUT! interview to begin her series of interviews about the experiences and thoughts of survivors and caregivers. Since then, Donna has published over 130 written interviews in which people answer Donna’s twenty survivor- or caregiver-specific questions to let the readers know their stories, tell of their lives, and give first-hand, and often hard-earned, advice for other survivors and caregivers.

In my original interview, I kept my answers short so others wouldn’t be intimidated. I didn’t need to. Other interviewees were not reluctant at all to discuss at length many of the aspects of their brain injuries. In this interview on the 20th anniversary of my TBI (traumatic brain injury), I hope to give you a more detailed look at my past and present life.

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

David Figurski

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

Surprise, Arizona, USA                  dhfdmf@aol.com

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

January 13, 2005          At age 57

4. How did your brain injury occur?

Each morning before showering, I would do Tai Chi warmup exercises and calisthenics. One day, my brain hemorrhaged on my 13th chin-up. 

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

I felt something happen in my head, but I didn’t have any pain, so I wasn’t concerned. I stopped exercising because I was seeing double. When my double-vision didn’t clear after a minute or so, I walked down the hall to where my wife (Donna) was getting ready for her job of teaching first-graders. I was exceptionally lucky that day – luck that gave me twenty years more (so far) of life. Normally, I got up at 4:00 am and left for my lab at Columbia University in New York City by 5:30 am. But I was planning to work at home that day to prepare a talk, so I got up later and overlapped Donna’s morning schedule. It turned out to be crucial because Donna saved my life. By the time I got to her, I was in crisis. She immediately saw that my right eye was filled with blood. Not long after, I felt something else happening in my head, and I began experiencing extreme pain. Donna dialed 9-1-1 to get emergency help. I became unintelligible because I was slurring my words. When the paramedics put an oxygen mask on me, the pain subsided, but I slipped into a coma, which lasted nearly three weeks.

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

The paramedics took me to the Emergency Room of a nearby hospital where Donna made her first life-or-death decision – that I have immediate surgery instead of a CAT (computerized tomography) scan to see if the pressure from the brain-bleed had decreased. It’s clear now that the time that would been taken to do a CAT scan would have decreased my chance of survival by several hundred-fold.

But Donna’s nightmare was only beginning. Over the next two weeks, she had to give permission for two more surgeries on my brain. My chance of survival continued to be low.

After the first surgery, I was carefully transferred by ambulance to Columbia-Presbyterian Hospital in New York City. There, the neurosurgeon discovered an aneurysm that had to be removed. That was the second surgery. I survived … but the neurosurgeon had more bad news for Donna. She had to give permission for another dangerous surgery – to remove an AVM (arteriovenous malformation), a tangle of arteries and veins that can be a “time-bomb.” Miraculously, I survived that surgery too.

(The neurosurgeon at the local hospital for the first surgery was highly skilled, but he gets an F-grade for his manner. His first words after introducing himself to Donna were that I “would make a great organ-donor”!)

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

Yes. I was in a coma for nearly three 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)? How long were you in rehab?

Yes. A couple of weeks after my surgeries at Columbia-Presbyterian, I was transferred to Radburn Rehabilitation Hospital, which specializes in helping patients with brain injuries. There I had inpatient therapies (physical, occupational, and speech) three days a week for three hours per day. I was discharged from Radburn after about two months, but I continued with outpatient therapies – first at Radburn for three months, and then for two of months at Dominican Hospital in Santa Cruz, California, where our son lives, and then back at Radburn for about a year. 

A year after my brain-hemorrhage, I went back to my lab at Columbia University as a volunteer to direct my research group. After I stopped going to Radburn for outpatient therapies (about eighteen months after my brain-hemorrhage), I returned to Columbia University as full-time faculty member. I had a standing appointment for two hours each week with a physical therapist, who worked with me in my office until I retired at the end of August 2013.

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

Fortunately, my hemorrhage was at the back of the brain, so no cognitive, memory, or major personality changes resulted from my TBI. I gave lectures, wrote and was awarded a multi-year research grant from the National Institutes of Health, mentored Ph.D. students and postdoctoral scientists, and wrote and published scientific papers. In short, I had my scientific life back – which was really important to me.

But because my cerebellum and brain-stem were primarily affected, I do have several physical disabilities.

I have double-vision from a defective nerve-muscle connection in my right eye. The right side of my face droops from being paralyzed. (The loss of my ability to smile caused me to lose an important part of my self.) My swallow has been affected. It is difficult to eat some foods, and I am always in danger of aspirating. Because the right side of my tongue is paralyzed, it’s difficult to make some sounds and pronounce certain words. (For that reason, I talk less and use fewer words. I have to be careful not to sound curt or rude.) I talk more slowly, and my voice has changed because my vocal cords were affected. (My slower speech allows me to substitute a word mid-sentence to one I can more easily pronounce.) My right arm is ataxic. I can use my left arm and hand for most things, but they are not as good as they once were. (For example, it’s difficult to use my left arm to raise a glass to my mouth, and it’s impossible to do so without shaking.) My right leg is weaker than it was, and my right ankle does not automatically flex the way it should. (I have to consciously focus on my ankle for it to bend properly.) At night, I get up to go to the bathroom about every 90 minutes because I have frequent urinary urges. (Thankfully, this is not a problem during the day.) The cerebellum, which is located at the back of the brain and controls balance, was severely damaged by my hemorrhage. Consequently, my balance is really poor. Donna and I hold each other whenever I walk outside or in a strange environment, like a restaurant. In the house, where the floors are even, I can walk short distances. I use a rollator (4-wheeled walker) for longer walks in the house and an electric scooter for airports and long distances outside.

I feel extremely fortunate that all my disabilities are physical. Of course, my life is now very limited, but I can still read, write, and communicate by using my computer – with my left hand.

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

Early on, I stopped thinking about what I could no longer do. Instead, I emphasized what I could still do. I then became totally comfortable with my life, and, as a result, my life now is better than it was in many ways. Of course, I would say it’s worse if I continued to grieve what I lost, but I consider that part of my life as gone, like my youth. So I don’t think about what I lost, except to be thankful that I had the chances to do what I did.

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

I do miss a couple of things from my pre-TBI life. I miss leaving the house on my own. I miss just doing what I wanted to do without having to carefully plan. I miss Donna’s and my dinner conversations. (Because my damaged cerebellum caused a loss of coordination between my tongue and my teeth, I have to pay close attention to chewing. So Donna and I don’t speak when I’m eating.) I was racing cars, so I desperately miss driving. While I have a device that scans a page and reads it to me, I miss having normal vision and reading books.

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

It’s hard to imagine, but my TBI caused me to improve in some areas. Things are much slower (because of my disabilities), so I can’t do as much as I once did. Because I’m slower, I’ve learned to be more efficient and more organized with the time I am able to work. Because I spend nearly all of my time at home, I have more time to be a part of Donna’s life. I have also bonded more closely with and have enjoyed more our dog, a Maltese-Poodle. Koda is a 2-year-old male rescue.

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

I intensely dislike my loss of balance. It’s an issue that’s a burden not only for me, but also for Donna, who helps me walk whenever we go anywhere.

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

I’ve been greatly helped by the positivity of most doctors; the nurses; the therapists; the staff; the Columbia faculty, students, and postdoctoral scientists; and many of the people I’ve come in contact with. But, by far, the greatest help has come from my wife, Donna – the most positive person I know. She cheers every gain – no matter how small. She constantly looks out for me, for example, choosing the easiest path in a restaurant, finding and researching an electric scooter, and bringing home several samples of items so I can choose.

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

My home life has indeed been affected. I no longer do repairs, so Donna does them. I can’t lift heavy objects, so Donna does what she can and gets help if she needs to. Donna and I do collaborate on some projects. We once had to assemble a piece of furniture. The assembly was complicated, so I laid everything out and understood the directions. I would tell Donna what tool to use and what to do. She was great – she did everything perfectly! Now we have a useful and beautiful cabinet. I used to do everything financial. Now Donna does. She pays the bills, gets everything ready for the tax preparer, and successfully negotiated the deal for our car. I am home a lot more, so we have more time to talk. Among our many conversations are talks about what she and I are feeling in our new life that resulted from my brain injury.

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

Donna and I weren’t overly social. We continue to socialize in small groups of family and close friends. In the past, our focus was on our two children – and on each other at our weekly “date nights.” Now, we not only focus on our children, but also on their spouses and our grandchildren. Nothing much changed after my TBI, except that I’m always at home and we don’t go out to eat as much anymore.

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

My wife, Donna, has always been my main caregiver. She was with me from the very beginning of my brain injury. Her first acts of caregiving for me were to call 9-1-1 before I slipped into a coma and to advocate for me in the hospitals. Survivors need to realize how heroic their caregivers usually are, how devoted caregivers are to caring for their survivors, how caregivers’ lives have also been severely disrupted – in these cases by brain injury, and how caregivers are often frightened by their survivors’ brain injuries and shocked by the changes to their survivors’ lives. Donna is always using her experiences and knowledge to help other caregivers with what is often an overwhelming responsibility. Donna has published an award-winning memoir (Prisoners Without Bars: A Caregiver’s Tale), which began as daily updates for family and friends around the country. In her updates, she discussed my progress or lack of progress for the day. Later, Donna wrote down what happened in a series of essays to have a record for me. About a year after my hospitalization, she began to read her essays to me. I was shocked by her horrific experience and convinced her to write a book. She did, and a publisher (WriteLife) was interested in her caregiver’s perspective on brain injury. (You can listen to the book trailer below.)

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

In ten years, I expect to continue to focus on the lives of family and friends, continue to learn about and explain science to the public, continue to discuss brain injury with other survivors and with caregivers, continue to help the public understand brain injury, and continue to make Donna’s life as easy as possible.

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.

Years after my TBI, I gained a perspective that helped me. It’s typical to blame your disability when it takes far longer to accomplish something than you think it should or when you can’t do something you think you should. What helps me is to realize the body is doing the best it can. This minor change of attitude has ended much of my frustration of feeling inadequate. So go easy on yourself.

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

I can’t emphasize enough the importance of surrounding yourself with positive people. Such people have had a crucial and beneficial effect on my self-esteem. For example, Donna has not only been my caregiver, but she is also my cheerleader. I had an excellent neurologist for years, but then we moved across the country. I found a new neurologist, but Donna and I didn’t feel any positivity from him, so we never returned. Likewise, if a doctor or therapist tells you you can’t do something, and it’s only his or her opinion and is not based experience or data, you may want to find someone else. It’s important for you too to have a positive attitude. At the very least, consider that you survived! Your positive attitude will affect others, especially your caregiver, who is often overwhelmed and who will not be further burdened by your feeling sorry for yourself.

 ********************************************************************************************************

Columbia University United States of America

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SURVIVORS SPEAK OUT! Sandee Rodriguez

 

Survivors SPEAK OUT! Sandee Rodriguez

presented by

Donna O’Donnell Figurski

 

Sandee Rodriguez Survivor 072624

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

Sandee Rodriguez

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

Ypsilanti, Michigan, USA

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

January 4, 1995     I was 24.

  1. How did your brain injury occur?car accident R-2

Nasty car accident

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

Immediately. I was unconscious and paralyzed.

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

I was airlifted to the hospital of the University of Michigan.

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

Yes. Two weeks.

  1. 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 for seven hours a day at Med Rehab in Ann Arbor, Michigan. I had physical, occupational, speech, talk, and recreational therapies. I also had retrograde amnesia. (At 24, I woke up with my past erased.)

Erased Memory

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

I had problems with all of the examples listed.

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

This question has no easy or short answer.

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

My pre-injury life is still a blank mostly.

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

I appreciate the experiences I may not have had if my TBI (traumatic brain injury) had never happened. It’s different every day.

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

Having it. It stopped the life I was creating at a time people become fully realized adults. 

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

I have been helped by my family and by the tenacity I have.

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

Other people have had issues with my brain injury. Those people are no longer in my life.

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

I have no active social life.

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

I am my own caregiver. My husband helps with what I ask. My mom and stepdad and my aunt were my caregivers in the beginning.

  1. What are your plans? What do you expect/hope to be doing ten years from now?Sandee Rodriguez & Book_n

The musical I wrote about my life with a TBI will be on Broadway by then.

  1. 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 don’t understand this question due to some aphasia I have now.)

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

Carpe diem (seize the day) and be easy on yourself. Meet one challenge at a time.

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Survivors SPEAK OUT! Rob Baugh

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

Rob Baugh

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

Home: Clarksville, Indiana, USA     Email: Rob.Baugh@outlook.com  

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

Date: July 21, 2020     Age: 45

4. How did your brain injury occur?

I knocked myself out opening a screen door. I suffered a 3-inch laceration to my skull, which required five stitches.

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

Immediately. The after-effects began right away, and we knew I needed medical treatment.

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

I went to the Emergency Room of the hospital. They put five staples into my head and did a CAT scan (CT or CAT = computed tomography) and X-rays.

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?

I did speech and cognitive (outpatient) therapies.

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

I have personality changes. (I don’t pick up on sarcasm very well.) I have had a headache since the day I hit my head, and it never goes away. I also have anxiety, depression, memory issues, and stress.

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

In some ways, my life is better, but it’s also worse. I have become more of a home-body. I don’t like loud noises and crowds. So being at home is my safe place. I still mourn my old self. But I have also made so many friends since my brain injury that it is kind of a blessing in that fact.

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

I used to sing and play piano at church, but I can’t do that anymore because of the stress of being in front of people.

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

I enjoy doing the brain-injury podcast that I started to help spread awareness and give a platform to other survivors to use to tell their stories.

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

I dislike my constant pain and my memory issues. 

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

I think being in a brain-injury support group and learning that I am not alone in this journey have helped me the most.

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

My brain injury has caused more stress on my wife. She misses the old me, and she does have to carry much more of the load than she should have to. She doesn’t complain about having to do more, but I know it has to be very stressful for her.

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

Yes, it has. I don’t do a lot of things outside my home. I don’t visit people like I want to or get to do things that involve big crowds.

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

My wife and I do understand what it takes. I call all caregivers “unsung heroes.”

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

I hope in ten years that I will have grown my platform so big that everyone who hears my name will think “brain injury” and will know what a brain injury is. I am a big advocate for survivors, and I want to educate as many people as I can.

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.

What I wish I would have done from day one is to get myself into a support group. My having a support group has helped me so much. It took me almost three years to join one. I felt like I was too weak to be joining a support group, but being part of a support group is totally necessary for survivors – and caregivers as well.

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

Surround yourself with positive people. Understand that the people you felt like you could count on when life gets tough will more than likely disappoint you. Don’t give into that or feel bad for relationships lost. You cannot heal if you are swimming in a toxic negative environment. 

 *****

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Survivors SPEAK OUT! Mike Gephart


Survivors SPEAK OUT! Mike Gephart

presented by

Donna O’Donnell Figurski

Mike Gephart

 

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

Mike Gephart

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

Oshkosh, Wisconsin, USA

-Email (optional)

geppyonbass@gmail.com

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

My brain injury happened on March 12, 2014. I was 40 years old.

4. How did your brain injury occur?

I was heading home from work on a 2-lane 55-mph county highway. As I approached an intersection, there was a man waiting in the oncoming lane with his left blinker on. He was struck from behind at 61 mph by an inattentive driver. The man waiting to turn was killed instantly. So less than a second later, I had a 54-mph head-on collision with a dead man (he was pronounced dead at the scene of the accident). car acciddent R

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

Another person instantly realized I had a major problem.

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

Twice, on the way to the ER (Emergency Room of a hospital, the EMS (Emergency Medical Service) paramedics got my heart beating. By the time my (now “ex”) wife got there to identify my body, I’d been put on machines. I was in a medically induced coma for nine days, and I was incognizant for 14 more days. After those 23 days, I heard the words “traumatic brain injury,” which described my biggest problem. 

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

Yes. I was in a medically induced coma. Of the nine days that I was comatose, two were spent trying to get me out of the coma.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?Cognitive Rehab 8-85260_ms-health-cognitive-rehabilitation-cognitive-behavioral-therapy-cartoon

I was in rehab at the hospital for a week after regaining cognizance. Then I went home and was given physical, speech, and occupational therapies by a home service. Once I could walk with crutches, I had outpatient therapy for another four months.

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

I had problems with balance and executive functions. My disability today is basically all about my executive functioning. I had third-party disability insurance through an employer. Because my injuries happened on my way home from work, they got a lawyer to get me on SSDI ASAP (Social Security Disability Insurance; as soon as possible). Because of my executive functioning, “ASAP” meant five years. 

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

I choose not to dwell on all the “bad” things that happened because of my accident. In my 1st or 2nd night of cognizance, crying in my bed alone at 3 am, I had a panic attack about everything that had occurred – and was going to happen. It was at this moment that I heard an internal voice say to me: Mike, bad things happened and will continue to happen far more than anything good.

*Energy you waste fearing Bad is energy you steal from loving Good. (I call that advice “Themandment.” And every one of the 10 commandments that Moses only had to climb a mountain lie safely under the umbrella of Themandment.)

So how has my life changed? I was blessed with clarity and the ability to reinvent my identity in and my understanding of this plane of existence.

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

Daughters RI miss being in a family unit with my daughters.

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

I’m blessed to know from experience what will happen with my soul when my body dies again.

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

I don’t like having to acknowledge my brain injury when it reminds me of why I can’t and shouldn’t try being what I was. 

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

Themandment helps me several times daily. 

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

The relationship with my ex-wife after the accident can’t even be called a relationship.

I came back a new man, and relationships, with what I call “1st Reality Sufferers,” are difficult because of my 2nd perspective. 

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

My social life has changed. I used to be a local rock star with a day job who went where he wanted and felt comfortable. Now, I don’t feel comfortable in many places, I have fewer friends, and I gig far less. 

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

My mother has power of attorney for me, and she is my emergency contact.  Early on, my in-laws watched over me while my (now “ex”) wife went back to work. 

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

I don’t plan further than a month yet. My world changed in less than a second. So living in the moment is paramount. Live in the Moment OIP

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.

Themandment: Energy wasted fearing bad is energy stolen from loving good. 

That one passage is a notion I wish I could have had in my 20s. Before my accident, I could spend a day worrying about things that might happen. It hurts to think back to all of the things I didn’t take the time to love and feel blessed to have.

One piece of advice a TBI mentor gave me. 

He said: “You didn’t unlearn anything in your accident. 

But you need to reinvent a new way to do everything! … with 40 years of experience.” 

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

I suggest three things: 

  1. Themandment
  2. Reinvent new neuro-pathways.

Relearning how the old ones worked is pointless. 

  1. Unconscious bodily functions! 

Focus on things like making it to the toilet on time. 

The reason newborns and the elderly wear diapers is because of brand new or deteriorating neuropathways. 

Don’t wait for your primary doctor to tell you about it.

 *****

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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 Comment” below this post.

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

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Survivors SPEAK OUT! Simon Limbrick

Survivors SPEAK OUT! Simon Limbrick

by

Donna O’Donnell Figurski


Simon Limbrick 2

1. What is your name? (last name optional)
My name is Simon C. Limbrick.

2. Where do you live? (city and/or state and/or country) Email (optional)
I live in Gloucester, UK.

3. On what date did you have your brain injury? At what age?
My brain injury happened in 1980. I was 15 at the time.

4. How did your brain injury occur?
My brain injury occurred when I was crossing a duel carriageway on my bicycle – something I did safely on hundreds of occasions. R

5. When did you (or someone) first realize you had a problem?
When I emerged from my coma (See my answer below.)

6. What kind of emergency treatment, if any, did you have?
My CT (computerized tomography) scan revealed a massive left temporal hematoma (The left temporal lobe is associated with understanding language, forming speech, and remembering verbal information); an aneurysm deep in the basal ganglia, which may have affected my coordination; and that I’d broken my neck in three places. The hematoma was operated on straight away at my local hospital, Gloucester Royal. They weren’t equipped to deal with the aneurysm, so, as soon as the first operation was completed, I was put into an ambulance and red-lighted 35 miles to Frenchay Hospital in Bristol. When I emerged from a two-week coma, I found I was paralyzed from the neck down. I also had a tracheotomy tube in my throat.

7. Were you in a coma? If so, how long?
Yes – two 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)? How long were you in rehab?
During my five-month stint at Gloucester Royal, I underwent the full raft of therapies: physio, speech, and occupational.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?
I had to relearn how to use my limbs, how to talk, how to dress myself, and how to walk. Although my right side had “come on line” first, walking was something I found very hard to do. Compounded by balance issues, I had a dropped right foot – a trip hazard in itself. I had leg braces made, but these meant I had to learn to walk with a slightly wider gait, as the inner rods and spurs would meet and cause me to stumble.

It was evident early on that I had fixed and dilated pupils. The right eye recovered some time after, but the left eye remained fixed. As the left eyelid gradually opened, double vision was apparent. This caused me to miss the bowl of the toilet a few times until I re-adjusted! My balance was shocking. Even when given a wheelchair later on, I told my hands to release, but the left was slow to react. As a result, I often got my fingers caught in the spokes. I compensated by learning to push with my right arm and steer and pull with my right leg.

My short-term memory and concentration were atrocious. My personality, mainly shy and introverted, now flourished in the attention I was getting from all quarters. My inhibitions quickly diminished in hospital. My personality grew with this new “gift” of disinhibition. Unfortunately, it was a double-edged sword, as I found I often did not engage my brain before putting my mouth into gear. I caused untold damage to myself and much angst to others countless times because of my lack of social inhibitions. There was nobody else to blame for this.

Simon Limbrick 110. How has your life changed? Is it better? Is it worse?
One never fully recovers from this sort of trauma. We learn to cope with it, or not, in our own ways. Me? I have learned the value of laughter – of being able to laugh at myself. How can we justify laughing at others if we cannot laugh at ourselves? In essence, having others laugh with us instead of at us changes our whole outlook on life. It enables us to put things into perspective.

11. What do you miss the most from your pre-brain-injury life?
I missed my youth and fitness, definitely. I miss my dexterity.

12. What do you enjoy most in your post-brain-injury life?
I enjoy my gratitude … my ability to put things into perspective … laughter … love … and the empathy to communicate with others.

13. What do you like least about your brain injury?
I dislike that, because of my brain injury, I’ve hurt people and I’ve made mistakes.

14. Has anything helped you to accept your brain injury?
Even though I cannot remember the incident, accepting my brain injury was key, but it was an accident.

Of all the cars I could have come into contact with that day, the car I collided with turned out to be driven by my dad’s best mate! Both he and two or three other witnesses attested that I caused the collision by pulling out when I did. I was then able to see things in perspective. I realised that the incident was an accident. I finally stopped blaming myself for the hurt I was causing others.

15. Has your injury affected your home life and relationships and, if so, how?
Of course my life and relationships were affected! My personality changed, which my family and friends … and I … found hard to cope with. Two friends – my closest – stuck by me, no matter what – even when their school exams were on. After I left the sheltered environment of the hospital, the severity of my situation dawned on me. Although I had made and continued to make great strides physically, the fact that I could not control my emotions and aspects of my behaviour continued to cause anger, intense frustration, and distress both in myself and in others. This situation went largely unvented and inevitably led to feelings of hopelessness and depression, which in turn led to thoughts of suicide. I’m ashamed to say that I even got uncomfortably close to seriously considering it a few times.

16. Has your social life been altered or changed and, if so, how?
My pre-accident social life was mainly confined to school, friends, and family. The gift/ curse of disinhibition has its pluses and minuses, as I’ve already mentioned. Learning how best to deploy it takes years, and, even after four decades, I can still get it wrong. However, I am a much more confident and outgoing person compared to my younger self. (Perhaps I would have been anyway. I guess I will never know.) Simon Limbrick & Wife 3

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
I am fully independent and have been living on my own for the past 27 years – though I do need help whenever I am faced with filling out a form.

18. What are your plans? What do you expect/hope to be doing ten years from now?
It may seem somewhat pessimistic, but I tend not to make plans. I have a will, of course, and my kids are looked after, but aside from that, I live day to day – not planning too far ahead.

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.
Never accept a prognosis. If you do that, you’ve lost 50% of the battle straight away.

To illustrate this point, I can remember my mother telling me I had not been expected to survive the first operation – or the second. “If he does,” the doctors told her, “he will be in a wheelchair for the rest of his life and needing 24-hour care.” I promised her she would have me back just like I was before.

Also, my consultant told me that I had 3rd-nerve damage in my left eye. The result is that I have a lazy left eye. I was told that I would never be able to move it and that I would be blind in that eye eventually. I reminded him that I was not supposed to pull out of my coma and that I should not be making the gains I was achieving. Within the first year, I had achieved slight lateral movement in my left eye. Over the years, it became more pronounced. It took a further 37 years to induce a good measure of vertical movement. My left eye is not yet synced with the right, but maybe it will be over time.

The road to recovery is never complete from this sort of trauma and is fraught with many pitfalls. The trick is to never give up. Win as many of the small battles as you can so you tip the advantage in your favour.

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
a. NEVER ACCEPT A PROGNOSIS. If you do that, you’ve immediately surrendered 50% of your chances of recovery.
b. DO NOT RELY ON ALCOHOL OR DRUGS TO GET YOU THROUGH. You are stronger than you believe you are. Excepting prescribed medications, mood-altering drugs just anchor you to dependence. You will never discover how strong you really are until you face reality and deal with it in the flesh.
c. DON’T BE AFRAID TO CRY. Realising pent up emotions enables you to carry on.
d. BE COMPASSIONATE IN ALL AREAS OF LIFE. You wouldn’t wish on anybody what you’ve been through.
Life Isn't Fair Re. ACCEPT THAT LIFE ISN’T FAIR. We need emotions to help us learn. Grow towards the light. Don’t become a weed and strangle those next to you. Treat others as you would want to be treated.
f. LEARN TO FORGIVE YOURSELF – AND OTHERS.
g. REALISE THAT YOU ARE NOT PERFECT.
h. REALISE THAT RESPECT, REAL RESPECT, IS BORN NOT OUT OF FEAR, BUT OUT OF COMPASSION. Compassion is a strength, not a weakness.

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Survivors SPEAK OUT! Ariel Johnson

Survivors SPEAK OUT! Ariel Johnson

by

Donna O’Donnell Figurski

Ariel johnson

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

Ariel Johnson

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

Long Island, New York, USA

-Email (optional)

ArielAnn.Johnson@gmail.com

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

My brain injury occurred on December 13th, 2007. I was 17 years old.

4. How did your brain injury occur?

My brain injury is from a car accident. While rounding a bend, I entered the oncoming lane, collided with a van, and hit a tree.     Car Accident R

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

I realized I had a serious problem the minute I woke up from the coma I had been in for a month and a half.

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

I had a craniectomy (surgery to remove a portion of the skull), brain surgery, then eventually cranioplasty (surgery to repair the skull).

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

Yes – for a month and a half

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 hospitalized for about three months. I received outpatient physical rehab for about five months after I was hospitalized. I was at Mount Sinai Outpatient Rehab’s Phase Two program, which taught me emotional regulation and how to be aware of myself.

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

I have issues with sensations on my right side because I have nerve damage there (hemiparesis). My personality changed completely – I didn’t care as much about certain people in my life who were not helping me. My perception of life got better as I became more in touch with my family and who I was as a person. I had emotional issues in the beginning of my recovery, but I feel like I have healed a lot of me. I can now give back and help others.

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

The accident was a blessing in disguise; I am so grateful that it happened. I would not know where I would be if it did not happen. I learned structure and life experience.

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

I miss the friends I once had. For a long while (and I mean almost 13 years), I was letting go of my friends. We were all at a point of our lives when we were moving on to college, and they did not understand my brain injury. I expected a lot of them, and I feel it wasn’t fair on my end. Plus, I found comfort in knowing that my sisters (including one childhood-friend whom I consider to be a sister) were my true friends all along and would never leave me.

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

I value learning to be so self-aware, learning to be structured, and understanding that I have been to hell and back. No one can bring me down.

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

Sometimes, my head feels weird when I’m trying to sleep at night. I also don’t like the fact that I have to part my hair a certain way to hide my scar.

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

Yes. I found help in exercise, experience, eating the right foods, word games, and just going through the motions of my recovery – both the negative and the positive parts.   Exercise R

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

My parents had been divorced for about seven years, but, after my accident, they actually got back together again. But I lost all my friends. I couldn’t keep friendships because I didn’t have any respect, love, or care for my own self. Plus, I had to relearn how to be human again.

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

Heck yea! For a while, I could not drink or drive; that limited me tremendously. Also, I could not keep relationships.

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

I am my own caregiver, but for a while, my needs were taken care of by my parents. I did have a woman take me to doctor appointments – she was lovely.

Positive Attitude R18. What are your plans? What do you expect/hope to be doing ten years from now?

In ten years, I am going to be motivating people every day through public speaking and collaborating with others on books, podcasts, and seminars. I am going to own at least five apartment complexes, each of which will make around $1 million yearly. I am going to be married and have at least two children. I am going to be happy, confident, and loving every moment of 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.

Time heals all wounds, but you need to go through the pain to heal. You also need to experience and practice – to push yourself even when you think it is not possible. Convince yourself that fear is just a word.

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

Enjoy every moment of your life. Perfect each baby-step, so that it turns into a habit and a better life.

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Survivors SPEAK OUT! Jordan Fallert

Survivors SPEAK OUT!     Jordan Fallert

by

Donna O’Donnell Figurski

Jordan Fallert

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

My name is Jordan Fallert.

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

I live in St. Louis, Missouri, USA.

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

I got my brain injury on February 5th, 2021. I was 23 years old.

4. How did your brain injury occur?

I got my TBI (traumatic brain injury) from a car crash around 5:30 on a Friday. I had just left work to go home to study for a test for my master’s degree. Studying

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

What saved my life was that a fire truck had responded to a fire on that same road. They were told their backup was no longer needed. Their captain (who was in an SUV, not the fire truck) saw the crash happen. I was unconscious on impact, and they had to use the “Jaws of Life” to get me out of the car. After I was rescued, they took me straight to the hospital to have emergency surgery. I was in a coma for six weeks. I slowly gained consciousness and became aware pretty quickly that I was in the hospital, but I had no idea why. That was my biggest indication that something was wrong. Also, I couldn’t walk, and I had extreme right-side weakness.

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

After I was rescued from my car and in the ambulance, the firemen realized very quickly I was having extreme difficulty breathing. I was hit on a road that had a speed limit of 45 mph. I was turning onto the road and going about 12 mph, and the other driver was speeding and going over 60 mph. Even though I was going so slowly, the force of the impact caused my diaphragm to rupture, my lungs to push on my stomach, and my stomach to push on my heart. Once I was at the hospital, I was immediately taken to the trauma floor. I was in surgery for about six hours.

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

I was in a self-induced coma for about 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)? How long were you in rehab?

Yes. I did a lot of rehab. I was in the hospital for about four months. As soon as I was conscious, they began putting me into rehab. I did speech, occupational, and physical therapies. After I was released from the hospital, I stayed with my mom in a house on the hospital campus and did intense outpatient therapy. And when I came home, I did more therapies at a hospital near me. It’s difficult to say how long I was in rehab, but I would guess about nine months.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?  wearing-specs-retro-cartoon-girl-teen-vector-illustration-148518868

My vision is one of my biggest problems so far. I go to a neuro-ophthalmologist to help combat my double vision. I have had some personality changes that my mom would probably agree with. But I would consider a lot of these “personality changes” to be normal for a very intelligent 24-year-old who had the whole world going for her. Someone else’s actions took that away. I also lost my independence.

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

My life has changed, but I wouldn’t say it’s better or worse; it’s just different. (I personally have really tried my best to think like that.) My life has changed in that I have to rely on people a lot more than I am comfortable with. I got a car for my 16th birthday (almost ten years ago), so I’ve always been able to go places and do things without having to ask other people for rides and things like that. It feels like I was knocked down a peg or two.

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

This is a bit of a complicated question for me. My life was in such a weird place when my crash happened. Courses all went online because of COVID. I had to come home–exactly from my undergrad degree. I continued with a job where I had my internship at, but I hardly saw my friends because of COVID. They were all in different cities in the US, and we couldn’t really travel. So I guess what I really miss are my college years because those are the most recent and foremost in my mind. Because of the accident, I have retrograde amnesia. So I don’t remember anything from about two years before.

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

Jordan Fallert & CavapooBefore my accident, I was on a breeder list to get a cavapoo puppy. I was sixth on the list, and a litter was born in May 2021. Some people skipped on this litter of two (the Tom and Jerry litter), so I was able to have my choice. I chose Tom and renamed him Brew. He has been my saving grace after my brain injury. He’s my best friend and constant companion. I don’t know what I’d do without him.

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

I don’t like feeling weak. This right-side weakness has been an uphill battle to deal with. But it’s getting better.

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

My parents have really been my saving grace. They have never given up on me and never make me feel like I am limited. If I want to do something, they encourage me and help me do it.

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

I continue to live with my parents since my brain injury. I was living with them before due to COVID. My parents have been nothing but great. But I have had a lot of friendships wither and decay, which has been hard in and of itself.

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

Yes and no. I didn’t have a social life before the accident because of COVID. After the crash and when I came home, I had some friends come see me at my house, but they slowly drifted away. It’s hard when you can’t drive, so you are always having to ask others to drive up to see you or drive you somewhere.

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

My main caregivers are my mom and my dad. I do not understand–and hope to never understand–what it takes to be a caregiver. I just know that they are the strongest individuals I know.

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

My plans are very fluid and always changing. I recently (less than a month ago) got my license, and last week, I was able to buy my own car. With these changes, my attitude and outlook have drastically improved. I feel like I can conquer the world if I have this outlook. A Traumatic Brain Injury won’t keep me down and will not limit me. I won’t let it!    R

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 was always angry that my brain couldn’t heal faster, but my mom kept reminding me that it’s not like a broken bone. It’s an organ that controls your entire body, so give it time to heal.

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 take your anger out on your caregiver(s). They want to help you get your life back. Hug everyone tighter, and tell them you love them. A brain injury will only limit you if you let it.

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Survivors SPEAK OUT! . . . . . . . Bill Gasiamis Stroke Survivor & Podcaster

Survivors SPEAK OUT!     Bill Gasiamis

Stroke Survivor & Podcaster

by

Donna O’Donnell Figurski

Bill Gasiamis

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

Bill Gasiamis

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

Melbourne, Australia

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

My stroke happened on February 12, 2012. I was 37.

4. How did your brain injury occur?

It was caused by bleeding of an AVM (arteriovenous malformation).avm-clipart-1

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

It was seven days before I took any action about it.

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

I was in hospital for seven days. After six weeks at home, my brain bled again (March). It bled again in November 2014, and then I had surgery.

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?

I had inpatient rehab for one month and out-patient rehab for six months. I had to learn to use my left side again and learn how to walk.

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

I have numbness on my left side. Fatigue is a problem. I have minor balance issues when I am tired.

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

Life is better. It’s more complicated because of what happened but my personal growth has been huge.

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

I miss playing running-sports, like soccer.R-2

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

I have a new appreciation for working on things that are hard and take a long time to complete.

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

Sometimes, I wish I had more energy.

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

I was helped by lots of counselling.

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

It has, but for the better. By my own standards, I am a better person than I used to be.

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

No

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

I don’t have one. (I am my own caregiver.)

03 BILL GASIAMIS mage-1024x998-118. What are your plans? What do you expect/hope to be doing ten years from now?

I intend to continue to interview stroke survivors on my podcast, to speak on stroke-related topics, and to write books on stroke recovery.

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.

Survivors need to understand that emotional recovery is a very important part of recovery. It is often overlooked. Emotional recovery supports both the physical and mental aspects of a survivor’s recovery.

R20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Take responsibility for your own recovery, and learn to put your energy into solutions instead of focusing on the problem.

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Survivors SPEAK OUT! Casey Chaffey – Living and Dealing with Chronic Pain

Survivors SPEAK OUT!     Casey Chaffey

Living and Dealing with Chronic Pain

by

Donna O’Donnell Figurski

Casey Chaffey 1

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

Casey Chaffey

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

Kentucky, USA     iluvtkj@yahoo.com

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

In 1998, at the age of 22, migraines had become a part of my life.

4. How did your brain injury occur?

Besides the severe head-throbbing, the migraines were often accompanied by nausea, vomiting, extreme sensitivity to light and sound, mental confusion, and more. I gave up caffeine (including chocolate), dairy, and gluten to try to reduce as much inflammation as possible. After being passed from doctor to doctor, I was diagnosed with a vestibular imbalance. That did not improve, even with almost a year of physical therapy, and it became the scapegoat for all of my symptoms.

A few years later, the pain changed from an unwelcome visitor to a permanent resident. Even on my migraine-free days, I still had a persistent headache. Dizziness, blurred vision, fatigue, and constant light-sensitivity decided to join the party as well. Fifteen years after my migraines first started, I was spending about five days a week in bed, and prescription medication was required for me to complete simple daily activities. Finally, after trying more than eighteen different prescriptions and seeing ten different doctors, I had a diagnosis. A fairly large cyst had been growing in the middle of my brain and putting pressure on my optic nerve, which is what caused the vision issues.Migraine

When I was 38 years old, a neurosurgeon removed the cyst. Recovery was not easy or quick. I had double vision for more than four weeks. My brain felt exhausted all the time, and I could not look at any screens (TV, phone, or computer). I had a panic attack for the first time in my life. I had to rest a lot. And my hypothalamus was damaged.

However, the moment I woke up from surgery, my constant headache was gone. I no longer felt and heard my pulse in my head. I went from migraines five days a week to six or seven days a month. My dizzy spells rarely show their unwelcome face anymore. I still have limitations and light-sensitivity, and I am always in some level of pain. My blurry vision will occasionally return, and an MRI (magnetic resonance imaging) in 2019 showed evidence of a small stroke at some point. In spite of that, I am thankful for how far I’ve come.

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

See above.

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

I’ve had treatments, but I didn’t go to the Emergency Room of a hospital.

There are two types of brain injury. Traumatic brain injury is caused by an external force, like a blow to the head or an object passing through the skull. A non-traumatic brain injury is caused by internal factors, such as a lack of oxygen or pressure from a tumor. I had both a cyst that put pressure on my brain for many years (non-traumatic). Surgical tools that were used to get to the center of my brain to remove the cyst (traumatic).

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?

I did not do any clinical rehab. My husband helped me go for walks, even when I didn’t want to. We started by just going to the end of our short driveway and back. We slowly worked our way up to crossing the street and then circling our small cul-de-sac. When we decided to attempt a loop at the park, I eventually made it. As I continued to push through, the distances grew.

When I was one day shy of being three-months post-op, I stood at the starting line of a half marathon in Nashville, Tennessee. I obviously could not run, but it was possible to walk 13.1 miles in the four-hour time limit, so I was going to try. It was one of the most difficult things I have done, but I crossed the finish line just under the wire.narathon

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

Looking at computer and phone screens for extended periods of time increases my migraines. I still have to rest more than healthy people, and my vision will get blurry if I do not rest in time. Socializing exhausts me, and I often spend the next day in bed with a migraine. Since my hypothalamus was compromised during surgery, I experience frequent hot and cold flashes. (The hypothalamus helps regulate the body’s core temperature.) I get overheated and feel like I cannot breathe, but when I take just my socks or sweatshirt off, I can start shivering and feel chilled to the bone within a minute or two. I used to love the heat of summer, but now it makes me sick if I spend much time in it.

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

My life is immensely better than it was the few years before my surgery. At that point, I wasn’t really living; I was simply existing. I have been able to offer advice and encouragement to others who were going to undergo brain surgery. Without my experiences, I would not have had those opportunities. I also recently published a book called 30 Days to Understanding Chronic Illness and Pain.Casey Chaffey 2

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

Besides just feeling healthy, I used to be active and fit. Working out gave me an energy boost and made me feel better, like it is supposed to. Now, I still try to exercise and I love hiking, but those things exhaust me. I often have to nap right afterward, and physical exertion can make my head hurt and feel foggy.

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

Besides my brain injury, I have other chronic illnesses. I believe that if I want people to understand, then it is my job to teach them (with patience and kindness). Of course, not everyone is willing to listen; but if I do not at least try, then I am not even giving them the opportunity. Navigating through the limitations and suffering can be discouraging. In addition to the symptoms themselves, the stigmas and misconceptions may seem insurmountable. My goal for my book is for it to be an easy and informal read that covers a wide range of topics, including invisible illnesses, cost, guilt and loneliness, fatigue, brain fog, pacing, prevalence, and more. My hope is that it will help me help healthy people gain a better understanding of what life with chronic illness and pain is really like, while also offering support and encouragement to those who are struggling. 

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

See above.

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

No answer

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

No answer

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

See above.

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

No answer

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

See above.

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.

this little girl has something to say

I wish I would not have stayed silent about my struggles for so long. I used to avoid talking about my pain and the journey that I was on. I do not like to complain, and I know that everyone has challenges in life. But as I slowly began to open up, people came out of the shadows. I realized that I was not alone in feeling alone and that others were going through the same or similar things. When we keep our suffering to ourselves, it can steal our entire focus and limit outside interests and distractions. This can lead to feelings of hopelessness, resentment, or loneliness. There is no shame in seeking therapy or other support to help you develop coping skills. While you may not be able to control the pain or limitations themselves, you can take control of how you deal with them. 

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

Rest is not laziness, and pacing is vital. We live in such a fast-paced world, and there is always so much to do. One of the hardest lessons to learn is to slow down because you cannot do everything that you used to. It is easy to feel guilty, lazy, or left out. It is difficult to leave projects unfinished and to stay home when everyone else is out having fun. But once your body informs you that you are overdoing it, you need to rest and stop comparing yourself to others. When you rest because your body is weak, you are not wasting time doing nothing. You are doing exactly what you need to do. You are recovering.

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Survivors SPEAK OUT! Karina Seda

Survivors SPEAK OUT!     Karina Seda

by

Donna O’Donnell Figurski

03 Karina Seda

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

Karina Seda

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

I live in Orlando, Florida, USA.     Email: livingwithoutlimitswithkarina@gmail.com

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

My brain injury was in 2008 when I was 15 years old.

4. How did your brain injury occur?

After surgery, my intracranial pressure rose and caused a hemorrhagic stroke. (An artery popped.)

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

Regarding the stroke, everything happened in the hospital, so the nurses were the ones who identified it. But if we go a few years back, my journey began when I was 12 years old and was diagnosed with an aneurysm.

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

I was rushed back to the operating room, and they used the defibrillator twice to bring me back. They also opened my cranium again to stop the bleeding. R

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

Yes. I was in a coma for two 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)? How long were you in rehab?

I took in-patient rehab for one month and out-patient rehab (occupational therapy, physical therapy, speech therapy, and health guidance) for around four years – until my insurance reached its limits.

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

I had lost all movements of the left side of my body, including speech, and my eyes were stuck facing a single direction.

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

Everything changed, including career, eating habits, social activities, and desires. However, everything changed for the better: I am living with a purpose, married with my soul mate, and helping others to be the best version of themselves.

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

I miss my social life and my friends.

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

I enjoy being able to see life at a young age with a completely different point of view. I like living with gratitude, admiration, compassion, and wisdom.

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

I don’t like the headaches.144-1447424_migraine-cartoon

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

I realized that everything happened with a purpose.

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

I’ve been affected by seeing how my situation changed the people around me and by how they treated me.

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

24 Karina SedaYes. In the past, if anyone called up to do something or to go somewhere, I could easily say “Yes.” It was hard to adjust to a life where I could not. Also, I try to do everything myself, but it is a bit hard whenever people try to help when I really don’t need it.

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

At the beginning, my mother was my caregiver. But now, I am my own caregiver. Yes, it takes a lot of passion, patience, and dedication to help some who, at the time, cannot help themselves.

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

I hope to keep living in the best version of myself and to be living my purpose. And I expect to keep working on my recovery. I also want to be helping others in a transformational way so they also can do the same.

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.

It was very frustrating to be living in suffering for a long period of time by myself. Having the right support, accountability, and system can be a tremendous help in working towards recovery.

15 Karina Seda Banner Living Without Limits20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Never give up! It is never too late to reintegrate into life in a healthy way and work towards recovery.

Get Your Copy Now

Read It! Review It! Listen to It!

                                                     

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  PAPERBACK!   Read it Now!     e-BOOK!   Read it Now!   AUDIO BOOK Listen to it Now!

Stay Safe and Healthy!

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 Comment” below this post.

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Brain Aneurysm, cerebral hemorrhaging, hemorrhage stroke