Donna & David with ARC of Prisoners without Bars: A Caregiver’s Tale
My memoir, Prisoners without Bars: A Caregiver’s Tale, is not only a story of David’s and my struggles after his traumatic brain injury, but it is also a love story. Though my memoir addresses a dire topic, it is peppered with comedic situations. They say laughter is the best medicine, and again, they are right.
Prisoners without Bars is a heart-wrenching memoir that will make you laugh, cry, and G-A-S-P. I promise!
It’s not a beach read, but it reads like one. It’s fast! It’s easy! It’s fascineasy. I mean fascinating.
What Readers are Saying!
Jackie said – “A beautiful and touching story.”
Anonymous Amazon Customer said – “I loved this book. almost couldn’t put it down.”
jlgwriter said – “I found the story powerful and compelling.”
Todd & Kim said – “This is such an inspirational story of survival! The book is a very easy read and informative as well as inspiring!!”
Judy said – “Donna O’Donnell Figurski tells her story of grace, love, frustration, anger, disappointment, strength, joy, and above all hope.”
Marge said – “I read it in one fell swoop… I guess the word that would describe your book, your life, and who you are is SUPERCALIFRAGILISTICEXPIALIDOCIOIUS.”
Anonymous said – “This book pulled me in immediately and didn’t let me go until the end! ”
Helen said – “Could not put this book down. Written for easy reading. It was like having a conversation with a friend.” “I finished it in one day with some teary moments along with some chuckles. A must read!!”
2. Where do you live? (city and/or state and/or country) Email (optional)
Isle of Wight, United Kingdom
3. On what date did you have your brain injury? At what age?
July 23, 2000 Age 36
4. How did your brain injury occur?
I flew off a horse.
5. When did you (or someone) first realize you had a problem?
I was diagnosed with a severe TBI (traumatic brain injury) in the hospital.
6. What kind of emergency treatment, if any, did you have?
None! On the day of the injury, I was left in the waiting area alone and unconscious for four hours. The next day, I was taken back to the hospital by ambulance and admitted. I had no scan – no observational tests were taken at all. I was sent home three days later without seeing a specialist.
7. Were you in a coma? If so, how long?
I was unconscious after the accident, but never in a coma.
8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?
As an outpatient, I had occupational and speech therapies from year 5 to year 6.5 post injury. These therapies were repeated in years 10, 14, and 18.
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
My problems are complex and multiple, but there is no visible physical impairment.
10. How has your life changed? Is it better? Is it worse?
It is fabulous!
11. What do you miss the most from your pre-brain-injury life?
Nothing
12. What do you enjoy most in your post-brain-injury life?
Living life with a purpose
13. What do you like least about your brain injury?
My executive-function impairments intrigue and fascinate me. There is nothing I like least. I accept everything and continue to work on improving.
14. Has anything helped you to accept your brain injury?
I had a total loss of self-awareness, so I didn’t ever have any problems with acceptance. It is a different journey.
15. Has your injury affected your home life and relationships and, if so, how?
My family didn’t understand – it took a lot of time. Now, I get a lot of understanding and support.
16. Has your social life been altered or changed and, if so, how?
I have been isolated since the injury, and I want to remain this way. I had a normal social life before.
17.Who is your main caregiver?
My daughter.
-Do you understand what it takes to be a caregiver?
Yes, absolutely.
18. What are your plans? What do you expect/hope to be doing ten years from now?
I hope to be doing what I am doing now – only less hours!
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.
Annie Ricketts – Brain Injury Survivor
Neuroinflammation starts straight after injury. It is like a switch being flicked ON. For many people, this inflammatory response continues until it is addressed. Research shows it can last upward of 17 years post injury. If you would like to know more about this and how inflammation creates and exacerbates symptoms, please visit globalbia.org.
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
Take care of your body – it is connected to your brain.
2. Where do you live? (city and/or state and/or country) Email (optional)
Houston, Texas, USA meghan_wang@yahoo.com
3. On what date did you have your brain injury? At what age?
In 2009, I developed lupus, an autoimmune disease, that turned into brain inflammation. I was twenty-two. Five years later, in 2014, I had another severe brain inflammation flare in which I forgot both how to walk and much of my past.
4. How did your brain injury occur?
Lupus is an autoimmune disease.
5. When did you (or someone) first realize you had a problem?
I first realized something was wrong when I began to struggle in grad school.
6. What kind of emergency treatment, if any, did you have?
A female Doctor.
I had a difficult time getting diagnosed, so I did not receive treatment the first year I was sick. I saw seven doctors before I was diagnosed with lupus.
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.)?
I have some short-term and long-term memory loss. While I don’t have noticeable balance problems, I have a poor sense of balance for someone my age.
10. How has your life changed? Is it better? Is it worse?
My life has changed in many ways since I’ve survived brain inflammation. In some ways, it has improved. I’m more fearless and confident. Because living with brain injury and lupus takes up so much energy, I have little energy for negative thoughts and people who might hold me back
11. What do you miss the most from your pre-brain-injury life?
I miss being able to memorize information quickly and with little effort.
12. What do you enjoy most in your post-brain-injury life?
I never would have started writing if I hadn’t developed a brain injury. It’s been an honor to be able to share my experience so that others with brain injuries can feel less alone.
13. What do you like least about your brain injury?
I dislike the fatigue that comes with lupus, as well as worrying that I will have a memory slip when speaking, presenting, or performing.
14. Has anything helped you to accept your brain injury?
What has helped me let go of my grief is understanding that, while living with brain injury is not a choice, grief is. I’d rather only live with one chronic condition than with two.
15. Has your injury affected your home life and relationships and, if so, how?
It took a while for my family to accept that my abilities and needs were different after my diagnosis. My second episode of brain inflammation led to my divorce because my husband was emotionally unable to handle it.
16. Has your social life been altered or changed and, if so, how?
I’ve been lucky to know friends who understand my limitations, especially because of the fatigue I experience daily. In many ways, brain inflammation has deepened many of my existing friendships.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
When I was very sick and bedridden with the second brain inflammation flare, my mother-in-law moved into my house to take care of me. Her selflessness and positive energy were huge factors in my recovery.
18. What are your plans? What do you expect/hope to be doing ten years from now?
I hope to have published a memoir about my experience.
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 use my phone to help me remember everything. There are so many apps to help you keep track of your life.
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
Always remember that the lowest point in your injury/life is not the point at which you will stay forever.
Now One Foot, Now the Other by author/illustrator, Tomie dePaola
Now One Foot, Now the Other by Tomie dePaola is one of my favorite books. I love all of Tomie’s books, but this one touches the heart.
My husband, David, had a traumatic brain injury in 2005 and, like Bob, had to relearn to walk. I guess I was my husband’s “Bobby” as I helped David to learn to walk again.
This book is so important in helping a child understand what happened to grandpa (grandma, anyone) when they suffer a debilitating brain injury. It is even an eye-opener for adults.
I highly recommend this book to any audience.
P.S. I once had drinks with Tomie dePaola and my friend, Paula Danziger, (author of the Amber Brown books) at the Roosevelt Hotel in New York City while attending an SCBWI conference. (Society of Children’s Book Writers and Illustrators)
Don’t let my looks fool you. I have a laundry-list of deficits. Some are obvious, and some become obvious only to those who live with me. The brain aneurysm didn’t kill me, but it killed the “me that I was” and gave my family and my friends the “new me.”
The brain aneurysm turned my world upside down. I wasn’t even aware of brain aneurysms until I had the “worst headache of my life” in 2004. It gave me a 24/7-headache, occasional bouts with depression, aphasia, neurofatigue, forgetfulness, memory loss, PTSD (post-traumatic stress disorder), sleeplessness, and loss of filter. I also have a short fuse.
It came unannounced, and I wouldn’t be here if it weren’t for the actions of my wife (Elvie). She was there and called 9-1-1 so I could be taken to the hospital as soon as possible.
I struggle with the “baggage” that comes with being a brain aneurysm survivor, but I chose not to be burdened by it. Instead, I chose to be an advocate. I help run a Facebook group of brain aneurysm survivors with almost 11,000 members.
2. Where do you live? (city and/or state and/or country) Email (optional)
San Jose, California, USA Nolan@CoachNolan.com
3. On what date did you have your brain injury? At what age?
My traumatic brain injury occurred on April 23, 2017, at the age of 31.
4. How did your brain injury occur?
I was the victim of a robbery. I was held at gunpoint and then shot in the head. My brain injury is bilateral, as the bullet went through both sides of my brain.
5. When did you (or someone) first realize you had a problem?
I was found in my car, which was riddled with bullet holes. I had an entrance wound in my skull from the bullet.
6. What kind of emergency treatment, if any, did you have?
I had seven blood transfusions, a craniotomy, and maybe some other things.
7. Were you in a coma? If so, how long?
Yes – fifteen days.
8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?
I have or had speech, occupational, physical, stretch, recreational, massage, and craniosacral therapies and acupuncture. It has been two and a half years now, and I put in eight hours a day, five days a week.
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
I was a paraplegic – I could not move from the neck down. I worked hard to overcome this, however. I still suffer from extreme spasticity, muscle imbalance, and minimal range of motion on the left side of my body, as well as in my legs.
10. How has your life changed? Is it better? Is it worse?
My life is better after my traumatic brain injury. Before the injury, I did not know how short, valuable, and fragile life is.
11. What do you miss the most from your pre-brain-injury life?
I miss skateboarding, making new friends at school, the freedom to get up and do anything I wanted at any given time, athletics, not having a caregiver, living alone, and having guests come over.
12. What do you enjoy most in your post-brain-injury life?
I like my perspective on and my valuing of both life and people. Life is so valuable to me now – more meaningful and beautiful.
13. What do you like least about your brain injury?
I love everything about my brain injury. Life is more important to me now.
14. Has anything helped you to accept your brain injury?
No
15. Has your injury affected your home life and relationships and, if so, how?
Yes. We had to make everything wheelchair-accessible, and someone always needs to be with me. Also, with my injury, I can’t get up and go make myself a sandwich or go to the store and get something that I want. Somebody needs to do those things for me. I am a lot more limited in that aspect, but it’s not a big deal if I plan ahead.
The biggest aspect about this question is addressing the invisible injury. People look at me and see that I’m strong, and they expect that, at any moment, I can just get up and start walking, hiking, or going on dates.
16. Has your social life been altered or changed and, if so, how?
Not really for me. I have always been a very social person, and my wheelchair is a great conversation starter! People come up all the time and ask me what happened. I am always making new friends.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
My mother
18. What are your plans? What do you expect/hope to be doing ten years from now?
(not answered)
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 is a tough question because no two injuries are the same, but I will share my input and what worked for me to get my legs strong again.
Learning how to use my legs has been especially difficult. My parents bought an assist-bar at Home Depot and mounted it to the wall, a little below chest height. I can use my wheelchair to wheel up to the bar and practice standing up, do squats, stand up, and let go and learn how to balance.
Another great thing that I would love to share is to go to your local community college and check out adaptive PE (physical education) classes. The community colleges by my house have adaptive PE – they have standing frames and parallel bars, and all of the equipment and workout-machines are wheelchair-accessible. Adaptive PE programs usually have water classes 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?
Nolan McDonnell – Survivor of Brain Injury
I would suggest that other brain injury survivors take initiative and demonstrate that they want to help themselves because that will encourage support from other people. Also, always continue doing exercises and stretching. Try to increase your range of motion, and workout constantly. Fitness creates a mind-body connection and promotes new neurological pathways. Additionally, if you take care of yourself physically, you tend to eat better – and proper nutrition is very important for a healthy brain.
This has been one heck of a decade! When I think back to how it all began, I would have never seen myself where I am now.
I began this decade healing from a concussion and graduating high school. I chose to do a “Victory Lap” so I could have the time to figure out what I wanted to do with my future.
As the school year began in September 2010, I returned back to varsity sports to continue to do what I loved … play.
Unfortunately, as most people know, it did not end well. I was knocked out during a basketball game in the last 4 seconds, leaving me with the concussion of all concussions.
I remember sitting in accounting, music, and business classes and crying to myself because it hurt too much to read the text. I also remember going home and breaking down because I no longer had the sports to turn to as a stress relief. I was frustrated with the amount of exhaustion I was feeling at the end of the day.
I was sent to a concussion rehab clinic for a few months, and this was the first time I felt like I finally had some answers. At the beginning of this decade, my parents would take me to the hospital every week to get tests done on both my heart and my brain. These tests concluded with doctors suggesting that my “new normal” was going to be a long transition with no end in sight.
Although all of my friends were applying to colleges and universities, I was told that I should not consider post-secondary education at that time. Despite this, I still applied to colleges and universities to keep my options open.
After being accepted to all of my options, I decided to go to McMaster University (MAC), so I had family support close by if I were really struggling. After accepting MAC, I met with a counselor to discuss what the rehab clinic had said I should have for accommodations.
After the guidance counselor at MAC agreed to all of the accommodations that were recommended for me, she suggested that I should take two classes a semester and take ten years to complete my undergrad.
Fast-forward to the end of the decade – most people know that not only did I choose to take a full course load, but I also chose to try to accomplish it without the accommodations recommended. The counselors did not believe I would be successful even with the accommodations and tried to talk me out of it. Not only did I take a full course load, but I was also working close to full-time hours at the same time.
Four years later, in May of 2015, I graduated with a Bachelor of Arts degree. In August 2015, I was hired in my first full-time job! After three months, I received a promotion, and then, ten months after that, I was promoted again to the position I am currently in. Over the last 4.5 years, I have had the amazing opportunity to work with so many amazing students and colleagues who have helped shape me into the person I am today. Unfortunately, I have chosen to leave my current position to pursue other opportunities.
As this decade ends, a new and exciting chapter begins! Today I find myself writing this from the comforts of my home as I begin my journey as an entrepreneur. My business partner and I are so excited to have the opportunity to quit our full-time jobs to focus on running our own business.
Along with reminiscing about my professional career over the past ten years, I also think about the personal experiences. Many have been positive, but I also had my share of sorrows. I have lost so many amazing people in my life, including both of my grandmas, my uncle, and a friend. I have lost a pet and nearly lost two more. I struggled with immigration. And, my mom was diagnosed with breast cancer.
I am very happy to say that I have also had the opportunity to see my mom defeat cancer and ring that victory bell. I am also happy that Rod and I no longer need to worry about immigration or travelling out of the country together for events. I also have a long list of amazing other things that have happened over the past decade: graduating, falling in love, buying a car, travelling to many cities and countries (for example, Las Vegas, New York City, Ecuador, the east coast of Canada, mainland Europe, and the UK), attending a conference in the United Nations headquarters, fundraising around $150,000 for both local and global organizations, making so many amazing new friends, experiencing weddings, getting over my fear of babies, having nieces and nephews, getting a kitten, and going back to school to study French as a second language.
Here’s to hoping that the next decade will bring less of the sadness and more of the happiness and excitement that I have been lucky enough/privileged to experience.
2.Where do you live? (city and/or state and/or country) Email (optional)
New
Hampshire, USA
Truecolorsartist@gmail.com
3. On what date did you have your brain injury? At what age?
October
and November 2012
But, my very first concussion was in 1998. I was 30 years old.
4. How did your brain injury occur?
The event in October
2012 was a fall caused by vertigo. In November 2012, I was cleaning under
the pool deck. I went to get up and banged my head, causing me to be knocked
out. I don’t remember what happened in 1998.
5. When did you (or someone) first realize you had a problem?
My boyfriend
at the time found me unconscious under the pool deck.
6. What kind of emergency treatment, if any, did you have?
I was taken to
the Emergency Room, and I had rehab. I had to live with my parents for a while
because they had to take care of me. I thought it was the year 2005 and my
children were 5 and 10, but it was 2012 and they were 13 and 18. Also, I was
going through a divorce, and my house was in foreclosure.
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)?
I had occupational
and physical therapies as an outpatient and speech therapy both as an
outpatient and as an inpatient.
–
How long were you in rehab?
I’m not sure
because I’ve been in a lot of rehabs for head injuries. I was in three in 2015.
My last rehab was in 2018, as my last concussion was in 2017. (I slipped on clothes
on my floor because my perception was off.)
9.What problems or disabilities, if any, resulted from your brain injury(e.g., balance, perception, personality, etc.)?
I struggle with many issues: balance, perception, personality, cognitive and executive functioning, memory, staying on task, aphasia, and impulsivity. It’s hard to make decisions and hard to be organized. I lost my independence. I lost my license for cognitive reasons back in December 2013.
Alisa Marie – Brain Injury Survivor
10.How has your life changed? Is it better? Is it worse?
I’m an artist, designer, and poet. I am also trying to have my own business, Alisa’s True Colors. I began melting Crayola crayons in 2013 when Emily, my younger daughter, showed me how to apply wax to canvas using a blow dryer and a fork.
This was helping
me as art therapy, where I could take physical and emotional pain and turn it
into something colorful and bright. It was all I could focus on for a while. I
didn’t know it then, but the seeds of Alisa’s True Colors were being planted.
It helped me learn and adapt to the new me. I was creating my ability out
of my disability.
11.What do you miss the most from your pre-brain-injury life?
Freedom
and independence
12.What do you enjoy most in your post-brain-injury life?
I have come to
realize that we hold within ourselves the power to heal. I have learned we
don’t need a superhero to save us; we need to be our own hero in our own story.
We need not to be afraid to chase after our dreams. And, if one door closes
keep looking for the open ones.
I am learning
happiness, calmness, and patience. I am accepting the new me, and, with my
limitations, I am finding new ways to adapt. I have let go of the past and my
old ways of thinking of what I believed of myself.
I have gained
wisdom, knowledge, self-confidence, and the courage to look fear in the eyes – to
truly know that being a survivor means being a fighter and not to give up no
matter how dark my world gets.
I want to awaken others to their true colors by helping them accept their new life after trauma – to help them heal through art.
13. What do you like least about your brain injury?
I dislike that
I can’t stay on task or stay organized. I am forgetful, and I talk strange
sometimes because I can’t remember the right word. I regret the loss of
close family and friends who don’t understand.
14. Has anything helped you to accept your brain injury?
Art and poetry
🙂
15. Has your injury affected your home life and relationships and, if so, how?
For a few years, I lost what empathy was. My emotions were all over the place. I had a lot of anger and resentment in me. You find your own “True Colors” with a brain injury or from a trauma where it can get very confusing when you are trying to find your true self. Unfortunately, the sad truth is that sometimes you see the “True Colors” of your loved ones. We can look fine on the outside, but no one can see our brain on the inside all messed up trying to find a new way of living.
16. Has your social life been altered or changed and, if so, how?
Yes. I have
social anxiety at times, and I’m embarrassed when I talk and can’t find the
words or when I can’t stay on task.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
Me,
myself. and I
18. What are your plans? What do you expect/hope to be doing ten years from now?
I hope to travel around the world with my story and products and to teach my art. And, I hope to also donate money to the Brain Injury Association of New Hampshire and other non-profit organizations.
I had to lose
everything from suffering traumatic brain injuries due to repeated head
injuries. I also had to deal with being diagnosed with viral meningitis in
March 2015. Then in the year 2016, I lost my home, and all my personal
belongings were discarded because of toxic environmental illnesses. I’m
surviving by designing.
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 isn’t the
ending to your life; it’s a new beginning. We all are creative. So, you just
must keep trying new things, whether it be writing, poetry, drawing, photography,
ceramics, embroidery, knitting, singing, or dancing. There is so much you can
do – you are not your disability or a diagnosis a doctor gives you. I never
gave up hope. I kept learning and reaching for my dreams when all I saw was
darkness
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
Every struggle,
every life-lesson is a gift because it makes you go deeper into yourself to
find your “true colors” – your inner strength, courage, wisdom, and
confidence.
I want others to
see and know that there is beauty in the darkness, that there is beauty in your
pain and tears and heartache. There is beauty in the ashes. There is a rainbow
after the storm. I hope people see my True Colors as a message of hope and
faith and love, to give them the hope and courage and strength to show it is
possible to overcome the battles we endure in this lifetime.
I never
went to art school. I have no degree – just education from repeated concussions
and my life-situations. My art saved my life and is continuing to do. It helps
with built-up resentment, emotions, grief, and physical pain. Art teaches that you
are a new person after your injury, and it teaches how to adapt to your new
life. Art is my therapy. I take the physical and emotional pain I feel and I
turn it into something beautiful and bright on the canvas.
Never give up!
To learn more about Alisa Marie, check out her website at Alisa’s True Colors.
Courtney Clark – survivor of Brain Injury & Motivational Speaker
1. What is your name? (last name optional)
Courtney Clark
2. Where do you live? (city and/or state and/or country) Email (optional)
Austin, Texas, USA
3. On what date did you have your brain injury? At what age?
In the spring of 2011, at age 31, I discovered I had an AVM (arteriovenous malformation).
4. How did your brain injury occur?
An AVM is a congenital birth defect of the blood vessels. I actually had no symptoms and no warning signs, but I had been living with it for 31 years when doctors found it.
5. When did you (or someone) first realize you had a problem?
My oncologist actually found my AVM at my 5-year cancer-free scans! Because I didn’t have any symptoms (usually symptoms are headaches and seizures), I had no idea that I had it. I also learned that three aneurysms were within the AVM. Any one could have ruptured at any time.
6. What kind of emergency treatment, if any, did you have?
I flew to New York to be seen by one of the top neurosurgeons I could find. I had three brain surgeries.
7. Were you in a coma? If so, how long?
I wasn’t in a coma. I woke up from surgery the first day, but I struggled with consciousness for almost 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 didn’t have to do rehab, but I did have to teach myself how to read again over the course of about a month because I really struggled with comprehension.
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
The main issues I struggled with right away were visual issues. I had a problem with depth perception, and, because of that, I couldn’t walk for several days – I could only walk a few steps at a time. For the next several months, I also had to work on reading and anything else that required visual comprehension.
10. How has your life changed? Is it better? Is it worse?
My life the first year was painful. I was running a small nonprofit out of my home, and I found that I could barely stay awake long enough to do any work. I felt completely helpless. (I couldn’t even take myself to the bathroom.) Now, I’d say my overall life is better – going through this with a supportive husband by my side has shown me I chose the right partner (the second time around). Also, I have even more perspective on life.
11. What do you miss the most from your pre-brain-injury life?
Yoga! I am NOT a natural athlete like everyone in my family. But, in yoga, I had mastered the headstand. I could do not one but two cool headstands! I felt like a rock-star athlete for the first time in my life! When my neurosurgeon told me that I could no longer do headstands (it sounds obvious now but caught me completely off guard at the time), it was the first time I really, truly wept. Like, I’ve been through so much, and now I can’t even do this ONE THING that brings me so much joy and makes me feel like a beast!
In a larger sense, I also miss that feeling of immortality that we all have when we’re young – when we think nothing bad could ever happen to us.
12. What do you enjoy most in your post-brain-injury life?
I’m so much more appreciative of my husband, my loved ones, and my life! Because of everything I’ve been through, I now get to research, write, and speak on resilience, and I love traveling the world to get to help other people.
13. What do you like least about your brain injury?
These days, nothing!
14. Has anything helped you to accept your brain injury?
One of the main things that helped me was volunteering and giving back to other people. (It’s a strategy I ALWAYS use to help me when I’m struggling with something.) Research shows that volunteering is one of the best ways to get perspective on our struggles.
15. Has your injury affected your home life and relationships and, if so, how?
My relationship with my husband, Jamie, has been affected – because I feel 100% certain that I’ve chosen the right life-partner. When I was diagnosed with cancer at 26, my then-husband wasn’t as supportive as I would have liked. The push in the direction to end my marriage was painful, but necessary. Jamie, my second husband, and I hadn’t even been married a year when the AVM was found. I was so worried that having to take care of me – take me to the bathroom, etc. – was going to hurt our new marriage. But, Jamie was, and continues to be, a most-supportive, caring partner.
16. Has your social life been altered or changed and, if so, how?
I feel very lucky – I didn’t have any long-term changes to my social life. Short-term, yes; but long term, not really. I will say that, after my surgeries, I have a “life is short” feeling – I don’t put up with a lot of BS or unkindness from friends.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
My husband was my main caregiver. I don’t know if anyone can totally “get it” until he or she has been through it, but I always say that in some ways it’s almost harder to be the loved one than the patient. It was especially difficult for Jamie to deal with me because I had experienced the world of cancer also! Jamie didn’t always get to be the one to choose the treatment plan, but he had to just go along with whatever I chose. And, I got wheeled away, and I slept through the 10-hour surgery, but my husband was awake, pacing the floor the whole time!
18. What are your plans? What do you expect/hope to be doing ten years from now?
Ten years from now, I want to continue traveling and speaking to groups to help them gain resilience and handle change and challenge.
19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.
My biggest helpful hint is that helping someone else is a tool that EVERYONE can use. So often, we think that, if we’re struggling, we have nothing to give. And, we may feel drained, exhausted, or like “Why do I need to help somebody else? I’m still getting help?” or “How could I even help someone, with my life the way that it is?” But, giving doesn’t have to be directed downward – to someone less fortunate. When I was sick the first time, I kept up with my volunteer activities, and I found that it gave me a sense of personal power and accomplishment, even when I didn’t feel like I was accomplishing much in my everyday life.
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
My best advice is that healing and recovering from a brain injury isn’t a linear process. Before your brain injury, maybe you were like me: go-go-go, getting everything done, climbing the ladder, all about success. You can’t just “bounce back” after something like this. It’s a long, slow trudge, which our society doesn’t glamorize. But, the slow journey is really the only option, and that’s not all bad. It’s an opportunity to reprioritize and savor the smaller things (which I used to ignore).
Courtney Clark – Survivor of Brain Injury – will be Keynote Speaker – BIAAZ Rays of Hope Conference – May 17, 2019, Phoenix, Arizona
My book, Prisoners without Bars: A Caregiver’s Tale, will be released to the public on November 1, 2018 by WriteLife Publishing of Boutique of Quality Books Publishing Company. Here are pre-order links for Barnes & Noble and Amazon.
Excerpt 3
Chapter 11
Hearths
presented by
Donna O’Donnell Figurski
David Figurski, PhD – a few months before brain injury
… The waiting room was huge. There were couches in clusters—some small, some large, each with a table in the middle. The groupings reminded me of The Clan of the Cave Bear by Jean Auel that I read many years ago. Auel wrote about prehistoric man, the Clan people. She told how each family gathered around its hearth at night. The hearth was a private place. It was considered impolite to peer into someone else’s hearth. That’s the way it felt in the waiting room too …
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