I’m so excited to be invited by the Brain Injury Alliance of Arizona (BIAAZ), to share my book with you. PRISONERS WITHOUT BARS: A CAREGIVER’S TALE has been called a compelling read, a true-to-life drama, and a heart-warming and inspiring love story. What do YOU call it?
More than fifteen years after my husband, David’s traumatic brain injury in January 2005, we are still searching for the light at the end of the tunnel. It’s there. It’s just still so tiny.
I hope you will join me on Saturday, October 24th at 10:30a Pacific Time for a virtual book club meeting on ZOOM.
It’s FREE!It’s FREE!It’s FREE!It’s FREE!
Please come hear me talk about my book and read a short excerpt. Bring your QUESTIONS.
REGISTER HERE and you will receive a link to attend.
Can’t wait to see you there.
I’d love to hear what you think of PRISONERS WITHOUT BARS: A CAREGIVER’S TALE. Reviews on Amazon, Barnes and Noble, and Goodreads are really appreciated. Reviews keep books alive.
Close friends of Donna and me, with whom we have a deep mutual affection, thought I needed some advice on my ongoing recovery from my traumatic brain injury (TBI). I know our friends care about me, so their words were well-meaning – but I have to admit their comments stung quite a bit. I’m sure they didn’t want to upset me. They think they know me, but, in ignoring my nearly compulsive commitment to getting better, they got me totally wrong. They also had no idea that what they thought to be helpful advice was completely unwarranted because it was based on my own deliberately artificial impression. Let me explain.
Our friends’ advice did not come from an ignorance of brain injury, as their daughter had a nearly lethal brain-bleed eight years ago. The daughter and I are both fortunate to have fully retained our cognitive functions, but we both exhibit physical disabilities. Some of her problems are similar to mine. The advice actually began with the daughter describing some positive experiences that led to a lessening of her disabilities – but then the discussion turned into advice for me.
One piece of advice that disturbed me was that our friends and their daughter think I don’t challenge myself enough. I don’t regard myself as a slacker, nor has anyone ever referred to me as one. Here’s where they got me wrong: I always try to do better at whatever I’m doing. In fact, it was my challenging myself that caused my brain hemorrhage in the first place. Every morning, I did tai chi and chin-ups. I had worked up to twelve chin-ups. The next day, my attempt to do thirteen caused my cerebellum to bleed and put me into a coma.
After surviving my TBI fifteen years ago, I continued to push myself as hard as I did before my TBI to improve in the shortest possible time. I currently do exercises to improve my balance, build strength, and help my eye muscles (I see double) six days a week. Three of those days, I also ride my recumbent trike (15 miles each time I ride – about two hours). On two of the non-riding days, I use the treadmill for 45 minutes. (I was riding 25 miles a day and using the treadmill for 60 minutes, but Donna worried I was pushing too hard and talked me down.) By the time I get ready, do my workout, and then shower and get dressed, six or seven hours have elapsed. My normal day begins after 2:00, sometimes after 3:00.
David exercising on his Catrike recumbent trike (and showing off my book, Prisoners without Bars: A Caregiver’s Tale)
I keep my weight down, and I work constantly to improve my posture because I know that both weight and posture affect balance. Also, to improve my brain’s ability to control my balance, I try not to brace myself with my hands. Even when I appear to be sitting calmly, I’m likely to be working. The brain hemorrhage affected the tendons in my neck, and my head tilts. To keep it straight, I have to work against my tendons. Hopefully, this will get easier, but it will take more years.
Our friends don’t really know any of this about me.
David exercising on his Alinker
When the father assists me outside, he deliberately increases the challenge to me. I do it, and would never say I can’t (My self-esteem has already taken a big hit), but I know I couldn’t maintain that effort indefinitely. (On the other hand, Donna is an incredible help to me. She knows when to assist me to make my life possible and when to challenge me.)
I think the father assumes that I can improve my balance like his daughter did. What he doesn’t realize is that my hemorrhage began in my cerebellum, which controls my balance. So, my brain’s mechanism for controlling balance has been disrupted. His daughter doesn’t have my severe balance problem, so her brain’s mechanism for controlling balance appears to be functioning. Her problem may have been a signaling issue.
It was surprising to hear that kind of advice from the daughter. We are fond of each other, and we have mutual empathy. It’s clear that the differences in our disabilities indicate an obvious fact: that different parts of our brains are affected. Thankfully, she doesn’t have all the problems I have. (For example, her vision is fine, and she is able to drive.) Her balance was affected, but fortunately, she can walk outside, including on grass, dirt, sand, or gravel. In contrast, my balance issue makes it impossible for me to walk unassisted anywhere outside, even on sidewalks because of their slight irregularities.
I am immensely thankful that that the daughter has none of the other problems that I have – double vision (which I mentioned), less feeling in my right leg, a swallow problem, a less coordinated tongue that makes chewing hazardous, a urinary frequency problem, extreme difficulty standing after sitting a while, an ataxic right arm, left hand and fingers that aren’t as good as they used to be, and paralysis on the right side of my face. I used to race cars, but now I can’t drive at all.
The daughter said her balance was improved rapidly by allowing herself to fall and learning the point at which that would happen. I do that when I’m near the bed, where I know I can fall safely. I’m reminded of race drivers who learned the limit of a turn by driving so fast that they would go off the course. That is one strategy for learning, but I chose another: to drive to the point I was scared I wouldn’t keep the car on the track. I learned that, even though it was scary, I was able to drive through the turn faster than I used to. (Incidentally, I was rarely passed by a driver from the other group.) Falling worked for the daughter, but it’s not the only way to improve. I use another, equally effective, method.
My second point illustrates another reason why our friends’ advice was incorrect: What I allow our friends to see does not reflect my life at all. Their error was to assume that it does.
Donna constantly offers to help me, and she doesn’t like to see me struggle. We discussed how I need to do things myself. My efforts take much longer than they did before my TBI, but doing them myself is good for my recovery and my self-esteem. Donna has since achieved a nice balance. She reluctantly lets me struggle and only assists when I ask for help.
At home, I do whatever I can physically, including making the bed every morning, doing the laundry, cleaning up after dinner every night, and loading and unloading the dishwasher. In fact, every movement I make is excellent therapy.
When we visit friends or when we go to parties, people see a very different version of me. I use a cane and take small steps to ensure I walk in a straight line and don’t bump the walls. Our friends would freak out if I they saw me pushing the envelope like I do at home! I let Donna help me or do things for me, not because I want her to wait on me, but because my instability would upset people and make them feel uncomfortable. Our friends are concerned because they constantly see me accepting Donna’s help.
They feel I’m not where I should be. They have erroneously assumed that I don’t work hard enough to improve myself. Their advice, while well-intentioned, is totally wrong. Given that I spend several hours each day working out, given that I believe everything I do is therapy and helps my recovery, and given that I accept Donna’s help to protect our friends from seeing my instability whenever I’m in their presence, “insufficient challenge” is an entirely misguided and utterly inappropriate concept to apply to me.
I would argue that, with all my disabilities, I’m actually doing much better than expected.
David Figurski, Ph.D. Brain Injury Survivor of 15 years
Donna O’Donnell Figurski and David Figurski – 15 years post-Brain Injury for David
(Photos compliments of contributor.)
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2. Where do you live? (city and/or state and/or country) Email (optional)
Apple Valley, California, USA
3. On what date did you have your brain injury? At what age?
July 4, 2012 Age 56
4. How did your brain injury occur?
Car accident
5. When did you (or someone) first realize you had a problem?
The impact was immediately known to be serious. I was in a coma at the scene of the accident.
6. What kind of emergency treatment, if any, did you have?
I was air-lifted from the scene of the accident. My condition was assessed. I had CT (computerized tomography) and MRI (magnetic resonance imaging) scans, and I was put on a respirator.
7. Were you in a coma?
Yes
If so, how long?
Deep coma: 1 week; sleep coma: 3 weeks
8. Did you do rehab?
Yes
What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)?
I had my therapies – occupational, physical, and speech – both as an inpatient and as an outpatient.
How long were you in rehab?
My therapies basically lasted 1+ years. I still do physical therapy every year to help with balance and strengthening.
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
I have problems with balance and perception. I have a personality disorder, a mood disorder, memory-loss, and nervousness, to name a few issues.
10. How has your life changed?
There is no normal. Every day is different.
Is it better?
No
Is it worse?
Yes
11. What do you miss the most from your pre-brain-injury life?
In general, I miss knowing where I am, my quick train-of-thought, and my memory.
12. What do you enjoy most in your post-brain-injury life?
I enjoy the people I have connected with through support groups and rehab.
13. What do you like least about your brain injury?
I dislike not knowing things in general and not understanding why I am like this.
14. Has anything helped you to accept your brain injury?
Yes. Jesus sent me back to let everyone know he and his father are alive. They love us, so it doesn’t matter what church you go to. They want to see us come home.
15. Has your injury affected your home life and relationships and, if so, how?
Yes
16. Has your social life been altered or changed and, if so, how?
Yes. I find it very difficult to interact with others now.
17. Who is your main caregiver?
My wife
Do you understand what it takes to be a caregiver?
No
18. What are your plans? What do you expect/hope to be doing ten years from now?
I have no plans for the future. I take it one day at a time.
19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.
(No answer)
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
Life will never be the same. Take it one day at a time, and believe it does get better with time. My wife’s favorite reminder motto is: “I am not what has happened to me … I am what I choose to become.”
(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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SPEAK OUT! George Visger (former player for the San Francisco 49ers)
Survivors SPEAK OUT! George Visger
(former NFL San Francisco 49ers player)
(originally published July 7, 2014)
presented by
Donna O’Donnell Figurski
#74 NFL San Francisco 49er, George Visger @ 1981
1. What is your name? (last name optional)
George Visger
2. Where do you live? (city and/or state and/or country) Email (optional)
Cypress, California, USA visgergeorge@gmail.com
3. When did you have your TBI? At what age?
I was first injured – had surgery – at age 22 during the 1981 Super Bowl season with the San Francisco 49ers.
4. How did your TBI occur?
I had a number of concussions throughout my 12 years of playing organized football. My first serious concussion occurred at age 13, during my third year of Pop Warner. I was hospitalized on that one. My final, and most severe, concussion occurred in 1980 against the Dallas Cowboys. I suffered a major TBI in the first quarter, yet I never missed a play by the use of over 20 smelling salts during the game (or so I was told later in the week when my memory returned). I also never missed a practice. Several months later, early in the ‘81 season, I developed hydrocephalus (water on the brain) and underwent emergency VP (ventriculoperitoneal) shunt brain surgery at Stanford. I have since survived nine emergency VP shunt brain surgeries, including five in a nine-month period in ‘86-‘87 while completing my Biology degree. I have also had several gran mal seizures, and I have been on anti-seizure meds for over 30 years.
5. When did you (or someone) first realize you had a problem?
I realized I had a problem during the ‘81 season. I developed major headaches and projectile vomiting. I saw balls of light in front of each eye each night. The team doctors diagnosed me with high blood pressure and prescribed diuretics for over two weeks, until I suffered focal point paralysis of my right arm. The team doc diagnosed me in the locker room with a brain hemorrhage. I drove myself to the hospital, where I underwent emergency VP shunt brain surgery.
6. What kind of emergency treatment, if any, did you have (e.g., surgery,
tracheotomy, G-peg)?
I have had nine emergency VP shunt brain surgeries since then. They drilled a hole in my skull and installed a permanent drain tube, which runs to a pressure valve in the back of my head. They plumbed that to drain into my abdomen. I am also on Lamictil for seizures.
7. Were you in a coma? If so, how long?
Nine months after my first shunt surgery, the shunt failed while I was fishing in Mexico with my brother. It took him a day to get me home, and I was in a coma from the pressure on my brain. I had two more brain surgeries ten hours apart and was given last rites. I was 23 at the time.
8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)?
I was never offered rehab. In fact, I was forced to sue the 49ers for Work Compensation just to get my second and third brain surgeries paid for. Until now, it was brain surgery, out the door, and “See you next shunt failure.” I did use Vocational Rehabilitation Services when I returned to school in ‘86 to complete my Biology degree. But, I was on my own to rehab after each of the five brain surgeries that I had while finishing my degree. I discovered B.R.A.I.N. (Brain Rehabilitation And Injury Network) founded by Sue Rueb in Cypress, CA, last year while speaking at a TBI conference. I literally moved there last August to get daily treatments – first treatments I have ever had. I do neurocognitive therapy and Yoga therapy, and I counsel other TBI survivors, which helps me as well.
How long were you in rehab?
I’ve been rehabbing since August 2013.
9. What problems or disabilities, if any, resulted from your TBI (e.g., balance, perception, personality, etc.)?
I have gran mal seizures, MAJOR short-term memory issues, poor judgment, anger-management issues, loss of direction, poor concentration, problems getting my words out or thinking of the right word, numbness in extremities, constant headaches, vision problems when my shunt goes out, diminished hearing, personality changes, problems handling finances, and brain seizures from alcohol, to name a few.
10. How has your life changed? Is it better? Is it worse?
I completed a Biology degree in 1990 at age 32 after eight brain surgeries, and I followed my second dream to be a wildlife biologist. I have never let my injury define me, and I thank God for it. I wouldn’t be where I am now had I not been injured. But recently, things have begun to spiral out of control. I lost my environmental consulting business (Visger & Associates, Inc.) in 2009, and I lost our house in 2011. My wife of nearly 19 years, and the mother of my children, and I are going through a divorce. It’s been too much for her.
11. What do you miss the most from your pre-TBI life?
I miss my family. I miss being The Giant – the guy who “could do anything,” as my wife used to say. I miss being able to remember things. I literally do not remember numerous out-of-state bow-hunts, months of my life, kids’ activities, etc.
12. What do you enjoy most in your post-TBI life?
I enjoy being able to use my injuries to help others. I feel it is my God given mission in life now.
13. What do you like least about your TBI?
Loss of my marriage
14. Has anything helped you to accept your TBI?
I’ve been helped by my belief that God has a plan for me and that “something good comes out of everything.”
15. Has your injury affected your home life and relationships and, if so, how?
It has destroyed my marriage, and I lost my ability to provide for my family.
16. Has your social life been altered or changed and, if so, how?
Social activities were impacted, as I liked to drink back in the day. Now the only impact is that I will forget to attend a social outing. I have never been embarrassed about my injuries. I’m just as goofy now as I was before my injury.
17. Who is your main caregiver?
I was single until my late 30’s, and I have been my main caregiver ever since. My mom stepped in for a few days during surgeries, and my older brother, whom I worked with, kept an eye on me. My wife has done what she could over the years, but she has never been through a surgery with me.
Do you understand what it takes to be a caregiver?
I understand better than most what it takes to be a caregiver. I also understand what caregivers go through. I call it the “Ripple Effect.” My family members and caregivers have taken a worse beating from my TBI than I have. It is much harder on our loved ones than it is on ourselves.
18. What are your future plans? What do you expect/hope to be doing ten years from now?
I founded The Visger Group – Traumatic Brain Injury Consulting in 2010, and I have spoken all over the country. I coordinate directly with the NFL on rule changes to reduce TBIs in football at all levels. I have spoken at congressional hearings, conduct motivational talks at schools and businesses, and currently am working with our veterans suffering from TBI. I am also suffering from frontal lobe dementia, and I hope to kick a few butts and rattle a few cages while I can, in hopes of changing the way the medical field treats TBI survivors and families. In ten years, I expect to be working with government agencies, our military, academics, and sports leagues. I plan to be leading and speaking at TBI-recovery groups.
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 TBI survivors with your specific kind of TBI.
George Visger #74 4th row from bottom, 2nd from right @ 1981
In football, there is a saying: “Short, Choppy Steps.” If you over-stride, it’s easy for someone to knock you on your butt. You want to keep your butt down, your head up, and take short, powerful 12-inch strides. Forget about breaking long touchdown runs. Get the little things done each day, and you will reach your goals. If a football team only got four yards each play – no more, no less – they would never lose a game. Think about it. They would get a first down every three plays, and they would score every time they had the ball. Life is no different. You need long-term goals for sure: score a touchdown, win the game, win the Super Bowl. But, you will NEVER get there if you don’t get your four yards a carry. We sell wrist bands on our website (www.thevisgergroup) that say “Short, Choppy Steps” and another one we give to coaches and players that says “Use your head, DON’T use your head.” Focus on small daily victories, and you’ll win the game.
20. What advice would you offer to other TBI survivors? Do you have any other comments that you would like to add?
Keep in mind everyone has a cross to bear. Carry your cross; don’t let it carry you. All of us TBI survivors have a lot to give to everyone. Turn your negative into a positive and touch people’s lives. Focus on your positives. Work hard, and put it in God’s hands. It will all work out.
That’s all anyone can do.
You can learn more about George Visger on his blog and these YouTube videos.
Heather Sivori Floyd – caregiver mom to her son, TJ
1. What is your name? (last name optional)
Heather Sivori Floyd
2. Where do you live? (city and/or state and/or country) Email? (optional)
Oldham County, Kentucky, USA
3. What is the brain-injury survivor’s relationship to you?
He (TJ) is my son.
How old was the survivor when he/she had the brain injury?
TJ was 7 years old.
TJ – Brain Injury Survivor – bicycle accident
What caused your survivor’s brain injury?
TJ was riding his bicycle when he wrecked into the back of his brother. He flipped over the handle bars and hit his head on the concrete. He went to “sleep” and never woke up until days after his emergency open brain surgery.
4. On what date did you begin care for your brain-injury survivor?
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
Yes – my three other children. I was also pregnant at the time.
6. Were you employed at the time of your survivor’s brain injury?
Yes
If so, were you able to continue working?
Yes – part time from home.
7. Did you have any help?
My mother-in-law moved in to help with my other children so I could care full-time for TJ with his therapy and doctors.
If so, what kind and for how long?
Well, she is still here.
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
Immediately
9. Was your survivor in a coma?
I’m not sure of the medical term, but he was unresponsive until several days after his brain surgery.
If so, what did you do during that time?
I slept beside TJ in a chair. I was three months pregnant and heartbroken at the fear of the unknown. What was it they called it? . . . Ah yes, “the new normal.” I was trying to figure out what that meant. You don’t actually “get it” until years later.
If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)?
Physical, occupational, and speech therapies; also, hippotherapy (the use of horseback riding to improve balance, coordination, and strength)
How long was the rehab?
TJ still goes to therapy.
Where were you when your survivor was getting therapy?
With TJ
11. What problems or disabilities of your brain-injury survivor required your care, if any?
Everything. TJ’s brain bleed damaged the whole left side of his brain and parts of the right. He was left with severe impairments, specifically in speech, language, memory, and cognitive function. He has safety issues. Because of attention, safety, and balance issues, he has trouble walking without hands-on help constantly. He also has memory problems, speech problems, vision problems, physical issues from having hemiparesis (weakness on one side), and a lot more.
12. How has your life changed since you became a caregiver?
Things that mattered to me prior his accident are non-issues to me now. I often times feel I can talk with doctors and therapists better than I can with most people my age. It can be lonely, difficult, and frustrating at times to find common connectors in my personal relationships with friends and family. Some weeks are packed full of appointments. I’m drinking so much coffee I think my system will crash. Just this past week, I knocked out four appointments in one day. The most I’ve done in one day has been seven.
Is it better?
I would say yes – my life is better. Even though this is the most challenging task of my life, my son is innocent, happy, and laughs a lot. I believe having the privilege to care for my child, who is special needs, has been the most rewarding love one can experience. The impact special-needs children make are life-long. You learn so much through them in how they view the world.
Is it worse?
No parent ever wants this for his or her child. That being said, my life is better because of the profound true joy my son has brought me. The worst part, I would say, is having struggles that are hard to overcome. Watching him struggle is hard. I do whatever I can to help him when this happens. Also, the stress of future planning is scary and overwhelming.
Heather Sivori Floyd & her son, TJ
13. What do you miss the most from pre-brain-injury life?
Our conversations. Most of the time, our conversations now are basic – food, eat, play a game, etc. I miss those conversations with my child that went beyond basic needs.
14. What do you enjoy most in post-brain-injury life?
Oh gosh, a child like TJ changes you in a profound way. The love you have in your heart for your child and others like him or her is something that is hard to put into words. I want to protect all of them forever. The world is full of evil people who would take advantage. I also enjoy trying to help others – to make it easier for the family who comes after us. There will always be another family. I’ve also learned to let the little things slide because, at the end of the day, they are just that – little.
15. What do you like least about brain injury?
Everything. It’s unrelenting and nasty. It takes a lot and rarely gives anything back.
16. Has anything helped you to accept your survivor’s brain injury?
Yes – TJ is happy. It is hard to justify my being sad or my crying all the time when he is happy. He lives in the now – not for tomorrow or the day before.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Yes – especially my personal friendships and my relationships with family. I think we are on different paths in life now. While they talk of work and social events, I am constantly thinking What can we do to make it better for TJ and others going through this? My closest friends are now the caregivers and survivors I’ve met locally. We work together locally to make a positive change for the brain-injury community. I also work with an amazing team of ladies who help me run two support-groups for survivors and caregivers. I started my first one seven years ago. I was scared after TJ’s brain injury, and I needed to know I was not alone. I needed hope. The groups grew to over 30,000, and the rest is history. The friendship we have is unbreakable. Shout-out to my amazing admins and friends: Melissa, Shauna, Margie, Mary, Michael, Eddie, and Alex. Love you all! We’ve met many who have inspired us in this journey.
18. Has your social life been altered or changed and, if so, how?
Um, what social life?! Seriously, I have no social life. It’s too hard to connect with others.
19. What are your plans?
My #1 plan is finding the best long-term situation for TJ that will ensure the best care he can have when we can no longer do so. Personally, I also plan to continue making a difference locally. We have several projects we are working on, and I have some more ideas to help. I ALWAYS have an idea. I’m always thinking big. Nothing brings me greater joy than helping others. It is important for families to know they aren’t alone and that people care enough to try and make it better. I try to do my part because of my son and the many we have met.
What do you expect/hope to be doing ten years from now?
I hope to still be laughing and loving the small joys in life with TJ. Hopefully, we will have made a big impact locally and beyond for the brain-injury community.
20. What advice would you offer other caregivers of brain-injury survivors?
Never give up. Let the small things go. Love deeply, and give your all. If you don’t, one day you will wish you had. Be the voice for your loved one. Never let “no” be an obstacle; there is always a way. If the door closes, kick it open. Most importantly, hang on when the days are hard and you feel you cannot go on. You can, and your survivor needs you to. Connect with other caregivers so you don’t feel like you walk this path alone – because you don’t. There are many who walk it with you daily
Do you have any other comments that you would like to add?
I think I’ve said what’s important for caregivers to know.
SPEAK OUT! Faces of Brain Injury – Blaine Stanziana (survivor)
presented
by
Donna O’Donnell Figurski
Brain Injury is NOT Discriminating!
It can happen to anyone, anytime, . . . and anywhere.
The Brain Trauma Foundation states that there are 5.3 million people in the United States living with some form of brain injury.
On “Faces of Brain Injury,” you will meet survivors living with brain injury. I hope that their stories will help you to understand the serious implications and complications of brain injury.
If you would like your story to be published, please send a short account and two photos to me at neelyf@aol.com. I’d love to publish your story and raise awareness for Brain Injury.
Blaine Stanziana (survivor)
Blaine Stanziana – Brain Injury Survivor
My story begins after a brain injury in 1979 at age 21. I developed epilepsy that went undiagnosed for eleven years. I had over 60,000 complex partial seizures; then I had a grand mal seizure. Falling six feet to a cement floor in 1988, I had a subdural hematoma that caused my second brain injury.
Here is my neck, which was done in 2007.
That’s three inches of bone from my left leg in the center of the sixteen screws. There is hip bone (two inches) in there as well. I was on the table for fourteen hours. I spent five years sleeping in a chair and a year begging for death. I could not talk for over a year because they split my vocal cords. But, I am alive, married for 35 years, and doing great!
Brain Injury Survivor, Blaine Stanziana and his wife
I coined these two sayings over 35 years ago:
“A head injury comes with a life sentence, and the only treatment for a brain injury is … HOPE.” “You cannot be defeated by what happens TO you – only by what happens WITHIN you.”
“It’s All in Your Head” by survivor, Blaine Stanziana
2. Where do you live? (city and/or state and/or country) Email (optional)
New Bethlehem, Pennsylvania, USA
3. On what date did you have your brain injury? At what age?
I was 47. My brain hemorrhage was in 2004.
4. How did your brain injury occur?
I had a subarachnoid hemorrhage (blood leaking into the space between two of the membranes that surround the brain; mine was from a ruptured brain aneurysm). I always like saying the correct medical terminology because I can actually remember how to spell it. For the majority of the time, I refer to it as “My head blowing up.” I also had a stroke during my craniotomy.
5. When did you (or someone) first realize you had a problem?
I was aware of my problems after I woke up from surgery. (The doctor wasn’t able to guarantee what kind of shape I would be in if I survived the surgery.)
6. What kind of emergency treatment, if any, did you have?
First, the hospital ruled out a stroke, and, because I complained of “the headache from hell,” they did a CT (computerized tomography) scan and found the bleed on my brain. They packed me up and transported me to Allegheny General Hospital in Pittsburgh, where I had my brain surgery done.
7. Were you in a coma? If so, how long?
No, thank God. I recognized everyone when I came out of surgery. I just couldn’t remember who was there to visit from one minute to the next. My daughter took pictures of me with everyone who came to see me.
8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?
I was in inpatient therapy for a month and then in outpatient therapy for about five weeks. I had to learn to do everything all over again – starting with feeding and dressing myself.
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
I have short-term memory loss and issues with balance, vision, and hearing. I have worked very hard over the past ten years to get to where I am today, and I did it all by myself.
10. How has your life changed? Is it better? Is it worse?
My life has changed dramatically. It is better. I love the “new” me much better than the old version. I also found out who my true friends are.
11. What do you miss the most from your pre-brain-injury life?
I did lose one thing I used to love to do. I used to sew for hours. I had my own sewing business. I made anything from window treatments to wedding gowns, and I was good at it. I lost all desire to sew; it is no longer something I love to do. It is more of a chore.
12. What do you enjoy most in your post-brain-injury life?
I like that I am back in school. I am taking college courses online. It is the biggest challenge I have taken on since the TBI (traumatic brain injury).
13. What do you like least about your brain injury?
I have an invisible disability, and some people think I am faking it and living off the system.
14. Has anything helped you to accept your brain injury?
Yes. Changing my attitude about people and life in general has helped. One day, I decided I could sit and cry for the rest of my life about all that I have lost, or I could be happy with my new life and live it.
15. Has your injury affected your home life and relationships and, if so, how?
My home life has been affected, but in a positive way.
I take pride in myself and in my accomplishments. Relationship-wise, it’s been a curse.
I haven’t been able to find people who can deal with my issues because they just do not understand. I am thankful they don’t understand how life is for a TBI survivor because, if they did, it would mean they also suffered a TBI. (The only way anyone can truly understand what life is like for a survivor is to live it themselves.)
16. Has your social life been altered or changed and, if so, how?
Yes. My social life has changed a lot. During the first year, I found out who my real friends are. Now I have a small circle of friends who I know I can trust. I go out dancing once a week with friends. I do this because I still can.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
After living with my daughter for about a year, I am now on my own. I do everything myself – I am even back to driving. I will say this much: I thank God for my GPS! Ha, Ha! Yes, I understand what it is to be a caregiver, and it takes a special kind of patience for a caregiver of someone with a TBI.
18. What are your plans? What do you expect/hope to be doing ten years from now?
I am working on a Communications degree and changing to Community Service and Social Work. My goal is to work with other survivors as a life-coach/advocate. I am getting better grades now than I ever did in high school. I can only handle two classes a semester, so it will take twice as long as normal to get my degree. But, I will see it through to the end.
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 didn’t take me as long as it does for some others, but learning to love your new self and accept your new life is, I believe, the secret to moving on. Love and acceptance of yourself is the base you can grow from.
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
I highly recommend that brain-injury survivors seek out other survivors. It was such an awesome feeling the first time I spoke to someone who “Gets it.” It was like someone turned my light back on. I felt free and almost normal again. I was no longer alone. I have a motto I live by. It was written from one of the first survivors I met – in a Yahoo health and wellness chatroom. I think he went by “Rhino.” Anyway, here it is. “Mourn what you lost. Use what you have. Anyone can quit.” My strongest advice to other survivors is “NEVER GIVE UP!”
SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.
If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at neelyf@aol.com.
If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.)
I hope we have millions of Itty-Bitty Giant Steps.
David Smith – Brain Injury Survivor
David Smith (survivor) … Today’s Itty-Bitty Giant Step is going to be to just get out of bed and to stay up.
Bonni Villarreal – Caregiver for Husband
Bonni Villarreal (caregiver) … My husband had a stroke in 2012, so he has an acquired brain injury (ABI). It has been a long, hard road as is most of what you post about. But, I do have wonderful news to report. After almost five years of having a G-Tube (gastrostomy tube), Mike is now able to drink fluids! (He’s been eating for a long time, but we didn’t think he would ever get back the ability to swallow liquids.) So, DON’T EVER GIVE UP! It’s almost five years later, and Mike is proving doctors wrong every day. He is going for a swallow test, so the tube can come out for good … best present ever!
Twelve years! Twelve years ago today, I came as close as a breath to losing my husband and best friend, David. While exercising (a thing he did every day to stay in shape), David did thirteen chin-ups, one more than he had done every other day. That was the proverbial “straw that broke the camel’s back,” or in David’s case, the “chin-up that caused his subarachnoid hemorrhage.” That day, as I rode with him in the ambulance to the hospital, I never realized what lay ahead for us. I never dreamed that this blip would be life-altering. I thought we’d be home by the end of the day, carrying on with life as usual. I was wrong!
David H. Figurski, Ph.D. – Brain Injury Survivor
David remained in the hospital in the Neuro-Intensive Care Unit (NICU) and the step-down unit at Columbia Presbyterian Hospital (now New York Presbyterian Hospital) for three weeks. While he was there, he was treated to two more brain surgeries – one for an aneurysm and the other for an arterial venous malformation (AVM). He then became a guest at a local rehab hospital for another two months, until insurance wrongly said he was fine to go home.
I am grateful that David is still with me. He wasn’t expected to be. Each surgeon gave me little hope that he would survive any of his surgeries. I’m glad that David proved them all wrong. I’m glad that we have had twelve more years together, and I hope to spend many more with this man whom I have loved since I was sixteen years old.
Hopefully, in the sometime future, you will be able to read David’s whole story in my book-in-manuscript, titled “Prisoners Without Bars: A Caregiver’s Tale.”
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I’m sure they didn’t want to upset me. They think they know me, but, in ignoring my nearly compulsive commitment to getting better, they got me totally wrong. They also had no idea that what they thought to be helpful advice was completely unwarranted because it was based on my own deliberately artificial impression. Let me explain.
controls my balance. So, my brain’s mechanism for controlling balance has been disrupted. His daughter doesn’t have my severe balance problem, so her brain’s mechanism for controlling balance appears to be functioning. Her problem may have been a signaling issue.
11. What do you miss the most from your pre-brain-injury life?
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
Everything. TJ’s brain bleed damaged the whole left side of his brain and parts of the right. He was left with severe impairments, specifically in speech, language, memory, and cognitive function. He has safety issues. Because of attention, safety, and balance issues, he has trouble walking without hands-on help constantly. He also has memory problems, speech problems, vision problems, physical issues from having hemiparesis (weakness on one side), and a lot more.
Yes – especially my personal friendships and my relationships with family. I think we are on different paths in life now. While they talk of work and social events, I am constantly thinking What can we do to make it better for TJ and others going through this? My closest friends are now the caregivers and survivors I’ve met locally. We work together locally to make a positive change for the brain-injury community. I also work with an amazing team of ladies who help me run two support-groups for survivors and caregivers. I started my first one seven years ago. I was scared after TJ’s brain injury, and I needed to know I was not alone. I needed hope. The groups grew to over 30,000, and the rest is history. The friendship we have is unbreakable. Shout-out to my amazing admins and friends: Melissa, Shauna, Margie, Mary, Michael, Eddie, and Alex. Love you all! We’ve met many who have inspired us in this journey.
It can happen to anyone, anytime, . . . and anywhere.
7. Were you in a coma? If so, how long?
SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.
tube), Mike is now able to drink fluids! (He’s been eating for a long time, but we didn’t think he would ever get back the ability to swallow liquids.) So, DON’T EVER GIVE UP! It’s almost five years later, and Mike is proving doctors wrong every day. He is going for a swallow test, so the tube can come out for good … best present ever!
Twelve years! Twelve years ago today, I came as close as a breath to losing my husband and best friend, David. While exercising (a thing he did every day to stay in shape), David did thirteen chin-ups, one more than he had done every other day. That was the proverbial “straw that broke the camel’s back,” or in David’s case, the “chin-up that caused his subarachnoid hemorrhage.” That day, as I rode with him in the ambulance to the hospital, I never realized what lay ahead for us. I never dreamed that this blip would be life-altering. I thought we’d be home by the end of the day, carrying on with life as usual. I was wrong!
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Surviving Traumatic Brain Injury 
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