TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI’

Survivors SPEAK OUT! . . . Thomas Hopkins, Jr (Tommy)

Survivors SPEAK OUT! . . . Thomas Hopkins, Jr (Tommy)

presented

by Donna O’Donnell Figurski

Tommy Hopkins, Jr Survivor of Brain Injury

 

 

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

Thomas Hopkins, Jr.

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

Mountain Home, Idaho, USA (originally from Wisconsin)

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

I was 19 years old.

4. How did your brain injury occur?

I have had several head traumas that led to my brain injuries. I’ll discuss the main ones. I have two injuries from February 2003. The first was due to a JDAM bomb (Joint Direct Attack Munition – a guidance kit that converts unguided bombs into all-weather precision-guided munitions). The second was from an explosion in a unit I was working with. In 2006, on my 4th tour, I had gotten a hammer to the head. I do not recall this incident at all. My fourth injury was in May 2007. I was still on my 4th tour. Our camp got morning RPG/mortar hits. The shop I was working in had one hit close by that shook the shop. The 40-lb. equipment I was working on fell over and hit me in the back of the head.

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

I started noticing issues after my first injury back in 2003 – daily headaches, ringing in my ears, light sensitivity, plus I would invert numbers.

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

Due to the units I was in, I did not get treatment. I’ll rephrase that – due to the units I was part of, unless you lost a limb, your sight, etc. or your life was in danger, you were not allowed to seek medical treatment.

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

No 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?

I started seeking help once I got out of the army. I started at the VA (medical care at hospitals of the Veterans Administration). It was not the best outcome.

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

I have convergence insufficiency (a condition in which your eyes are unable to work together when looking at nearby objects, creating double or blurred vision),

photophobia, daily headaches that turn into migraines, and constant tinnitus. One doctor said I have damage to the autonomic and limbic systems in my brain. Other doctors have said that I don’t even have a brain injury! (LOL) I have no concept of time; I experience jerks (involuntary muscle movements); I search for words; my speech is slurred; my brain often won’t let me get my words out; and I have a poor memory. I do not feel 60+% of my body, and my lower limbs do not work a lot of the time. “Partial Para” is what they call it. At times, I need to be in a wheelchair.

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

Worse

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

I miss my memory. It used to be photographic.

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

Retirement (LOL) … Driving my wife nuts (LOL) … Um, working my brain in different ways to work on problems and situations that come up in my hobbies

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

I’m not Johnny-on-the-spot anymore. I miss my memory. My body is going to shit.

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

MY WIFE. Even though most of my injury is “invisible,” she showed me that I also have physical scars that I and others can see.

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

Yup. That’s a very long answer.

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

Yup. We lost a lot of friends and family because I was not the same Tommy I was before I was brain-injured in the war.

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

Tommy Hopkins, Jr. Brain Injury Survivor
Caregiver – Kristina Hopkins

MY WIFE! I have a rough idea of some of what she does for me, but I have no clue of what all she does.

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

My “plan” is to maintain what I have and live each day as if it is my last.

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.

Yes. You have to adapt to your new self. That old person is gone. I had to realize I will never be as I once was, BUT I am still able to do most things with adaptation.

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

My advice: Good days come and go. Work with the day you have because you don’t know what tomorrow will bring.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Past Blast – TBI TALES . . . . . . What’s Really Important

What’s Really Important

(previously published on February 14, 2015)

 by

 Kayla Bradberry Knight

(presented by Donna O’Donnell Figurski)

 

Kayla Bradberry KnightLast year on February 13, my husband, Wyatt, took me out for a Valentine’s Day dinner. He and the kids gave me cards that morning. I was on cloud nine. Who would have thought that five days later my husband would be fighting for his life and our families would be turned upside down?valentine-s-day-clip-art

God has taught me many lessons this year. Most of all, I’ve learned that earthly possessions mean nothing. Sure, they make one happy for a while. But no gift, flower bouquet, or box of chocolates could take the place of what I have today. My husband is still here! Oh, how happy it makes me to be able to say that!

He may not realize that it’s even Valentine’s Day. Nor will he walk through the door with a gift, BUT I still get to hug him. The kids and I still get to tell him how much we love him. That, my friends, is irreplaceable. Don’t just sign that sweet card or have those beautiful flowers delivered. Show that person how much he or she means…not just today, but every day!Love Every Day

 

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

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at donnaodonnellfigurski@gmail.com. I will publish as many stories as I can.

 

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TBI Tales . . . . . . . . . . . . . . . . . They Meant Well, But I Knew Better

They Meant Well, But I Knew Better

by

David Figurski

presented by

Donna O’Donnell Figurski

 

David Figurski, PhD Brain Injury Survivor

 

 

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.

IMG_2935

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 Alinker IMG_4470

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

David & Donna Dec 2019 Lupitas

Donna O’Donnell Figurski and David Figurski – 15 years post-Brain Injury for David

(Photos compliments of contributor.)

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Brain Injury Resources “I Give Up” Composed and Played by Elijah Bossenbroek

Brain Injury Resources …

“I Give Up”

Composed and Played by Elijah Bossenbroek

presented by

Donna O’Donnell Figurski

This is an amazing piece of piano music composed and played with breathtaking emotion by the young and upcoming (some say “genius”) pianist Elijah Bossenbroek. It’s Pianoa very moving piece, about which commenters have written “sad,” “uplifting,” and “inspiring.”  I can only assume that Bossenbroek has “triumphed” over an extremely sad part of his own life.

It is an appropriate piece for survivors of brain injury, who usually experience these emotions at one time or another. Listening to this piece gave me chills.

Never Give Up

 

 

 

Never Give Up!
Scream!
Yell!
Breathe. Breathe. Breathe.
Move on…

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Survivors SPEAK OUT! . . . John Bradshaw

Survivors SPEAK OUT! . . . John Bradshaw

presented

by Donna O’Donnell Figurski

 

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

John Bradshaw

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.)

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Past Blast: Survivors SPEAK OUT! George Visger (former NFL player)

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.

Visger, George  2008-06-15 21.03.51

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

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.

George Visger Blog – Life Before and After Football

George Visger talks about his life in these videos:

The Damage Done — George Visger’s Concussions

Battle Scars: Stagg High Alum, Former 49er Fights on Despite Brain Injuries

George Visger addresses specific topics in these very short videos:

Visger-275x300

Do Helmets Give Football Players a False Sense of Safety?

Would This Retired NFL Player Do It Again?

Thank you, George, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

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

(Photo compliments of George.)

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

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post:

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

anim0014-1_e0-1

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

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Survivors SPEAK OUT! . . . Alisa Marie

Survivors SPEAK OUT! . . . Alisa Marie

presented

by Donna O’Donnell Figurski

Survivor of Brain Injury
Alisa Marie

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

Alisa Marie

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?

tenor

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.

3 Alisa Marie

Never give up!

To learn more about Alisa Marie, check out her website at Alisa’s True Colors.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post:

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SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty Giant Steps

presented by

Donna O’Donnell Figurski

 

Itty-Bitty GIant Steps for Blog

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 donnaodonnellfigurski@gmail.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.

 

Sherrie Crusha – Brain Injury Survivor

Sherrie Crusha (survivor) … I haven’t been able to draw a whole picture since my TBI (traumatic brain injury), 31 years ago. I did my best one yet a couple of days ago.

Drawing by Sherrie Crusha

 

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

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SPEAK OUT! NewsBit . . . . . . . Brain Research in Mice May Lead to the Treatment of PTSD and Depression in Humans

Brain Research in Mice May Lead to the Treatment of PTSD and Depression in Humans

presented by

Donna O’Donnell Figurski

A young Boston University professor, Steve Ramirez, a neuroscientist, has identified cells of a mouse brain that enhance the positive or negative scientist-clip-art-41a38614afbd47caca00c32a563f44defeelings of a memory.

Stimulating cells that enhance positive feelings can suppress or deaden the trauma associated with a bad memory. In contrast, stimulating cells that enhance negative feelings makes a bad memory feel worse.

The hippocampus in both the mouse brain and the human brain is the region of the brain responsible for storing memories, including all the details and emotions associated with them. Each memory activates a unique combination of cells of the hippocampus.  Some of the cells affect emotion and behavior.

mouse-clip-art-grey-pink-mouse-mdRamirez and his collaborators (including first author Briana Chen of Columbia University) used genetically engineered mice whose neurons glow when they’re activated. Those cells can later be artificially activated with laser light. The team found that a negative memory (like getting a mild electric shock to the feet) activates cells at the bottom of the hippocampus.  A positive memory (like being in the presence of a female mouse) activates cells at the top of the hippocampus.

They then were able to stimulate those same cells with a laser.  When the bottom cells of the hippocampus were activated, the mouse behaved (freezing and/or avoidance behavior) as if it were recalling the negative memory of the shock. Stimulation of the cells in the top region of the hippocampus reduced the avoidance response.51wUt-P+FKL._SL500_

This is basic research, but it is a significant first step in the eventual development of treatments for PTSD (post-traumatic stress disorder), anxiety, and depression.  (Full story)

(Clip Art compliments of Bing.)

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Feel free to “Like” my post.

Survivors SPEAK OUT! . . . . . Steven A. Marderosian

Survivors SPEAK OUT! Steven A. Marderosian

presented by

Donna O’Donnell Figurski

 

Steven A. Marderosian Before TBI 20190429_120335

Survivor – Steven A. Marderosian Pre-TBI

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

Steven A. Marderosian

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

Barrington, Illinois, USA; E-mail: steven@marderosianlaw.com

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

February 28, 2018; I was 49 years old.

4. How did your brain injury occur?

AVM (arteriovenous malformation) rupture – hemorrhagic stroke

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

My wife heard me sounding confused while talking to someone on my phone. Later she saw me looking at my phone as if I didn’t know what it was or how it worked. Then I started to notice my left arm going numb, and then, my left leg. I tried to “walk it off,” but I crashed to the floor.

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

My wife raced me to the Emergency Room, where I triggered a “stroke alert” response. I recall only the very start of it. My wife was kept outside a curtain, so I don’t know any of the details before I stabilized.

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

By the grace of God, 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?

Towards end of two weeks in the Intensive Care Unit/neurology (and removal of my AVM by rare cross-craniotomy brain surgery), I had physical therapy, occupational therapy, and speech therapy evaluations in the regular hospital. I spent two more weeks in a rehab hospital for physical, occupational, and speech therapies. I then moved home with six more weeks of physical therapy and occupational therapy in a partial admission “day rehab” at the same rehab hospital. My total was more than two months of rehab.

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

My left side was paralyzed from the shoulders down – it was near total from the ribcage down. (I had no balance – I couldn’t stay up on all fours.) My left shoulder/arm/hand was moderately impaired. I have no real cognitive deficits per se, but my mental processing is disabled in high-level speed and volume capacity. My AVM was at the border of the frontal and parietal lobes, bleeding into the frontal lobe in the right hemisphere. It fractured me emotionally.

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

surfer-boy-clipart-1It’s a mixed bag. I got up on a board and surfed just three months “post op” (against a “no contact sports” order). I’m physically stronger and even faster than I was pre TBI. But, my mental processing speed and capacity are still disabled. A bipolar diagnosis a few years pre TBI (likely due to progressive blood flow abnormality) appears to have been rectified by the AVM removal. But, while my mood is more stable, I still struggle to figure out my new personality. My general emotional state is different and strange.

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

I miss the lightning-fast mental processing and the seemingly limitless volume capacity. I miss not having to relearn every maneuver in black belt karate and fighting, downhill (telemark) skiing, and all other physically demanding things I’d been doing. I miss the 6-6.5 hours of sleep per night without ever napping or feeling tired.

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

I like that I care about the real suffering in the world (i.e., not my own, by comparison), in the midst of which I lived and rehabbed. I like having a far more stable mood and seemingly being cured of bipolar disorder. I’m looking forward to this second chance to fix past mistakes and live as God wants me to. And to never, ever, fear anything in the world again – other than God.

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

I dislike needing way too much sleep and always being tired no matter what I do or don’t tired-clipart-they-7do. I don’t like figuring out my new altered personality, my future career, and even my likes and dislikes. I don’t like having to relearn every advanced physical maneuver and regaining my previous mental processing speed and volume capacity.

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

I have been greatly helped by my undying (and now bulletproof) faith in Jesus Christ; by my eldest son, who is bipolar (now I want him scanned for an AVM too) and is the only one in my family who understands my continuing emotional turmoil; and by the support of my close friends in Christ and by my BFF of 45 years.

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

I look, speak, and act “fine,” so family (except my eldest son) and others don’t really understand my continuing emotional turmoil and new personality. So, I keep my inner feelings mostly to myself (and to my BFF, to my eldest son, to my bible study group, and to my therapist).

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

I was kind of a homebody before, so my social life is not much different. But, busy, noisyno-noise-clipart-1 places, like crowded restaurants, create a sensory overload that can become overwhelming, especially after high-stress or high-volume days. It’s like I can hear every individual sound of 100 people, intercoms, TVs, and devices all blaring at once. I just want to scream, “Will everyone please just shut the f#@k up!?”

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

I’m so undeservedly blessed that I don’t have or need a caregiver anymore. My wife had to do it for the first few months after I moved back home, but I’ve been mostly on my own since then. My “emotional caregivers” are probably my BFF, my eldest son, my bible study group, and my therapist.

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

I can’t tolerate the blatant dishonesty and BS involved in practicing law anymore (especially litigation, where it’s the worst) – not my own, but that of others who simply “double down” when I catch them and call them out. Far too many “judges” seem even worse than the lawyers. My BFF and I have done construction rehab work, and we just launched a demolition and construction company. In ten years, I hope it will be my main source of income, with my eldest son working with us and me taking only select legal work “on the side” (which sounds like Heaven). I wrote a book on God’s miracles in m

Steven A. Marderosian After TBI 20190429_113920

Survivor – Steven A. Marderosian Post-TBI

y experience. I hope to write more and to speak to inspire and help others overcome their crises and follow Jesus Christ.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Don’t try to force yourself back into who you were; you simply aren’t that person anymore and never will be again. I always say that as well as I’m doing now, “everything is different” somehow. Embrace who you’ve become and the power your experience and resilience have given you to overcome any obstacle. And, help others do the same.

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

Thank God constantly for every breath you take; every blessing you have; and even every challenge, setback, and outright sorrow you experience. All these things work together to achieve God’s will to make you stronger and better as the person He wants you to be. And never, ever, sweat the “small stuff” again – life’s just too short.

With all God’s blessings to all survivors everywhere,

Steven A. Marderosian

(Clip Art compliments of Bing.)

(Photos compliments of contributor)

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What is your name? (last name optional)

Steven A. Marderosian

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

Barrington, Illinois, USA; E-mail: steven@marderosianlaw.com

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

February 28, 2018; I was 49 years old.

How did your brain injury occur?

AVM (arteriovenous malformation) rupture – hemorrhagic stroke

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

My wife heard me sounding confused while talking to someone on my phone. Later she saw me looking at my phone as if I didn’t know what it was or how it worked. Then I started to notice my left arm going numb, and then, my left leg. I tried to “walk it off,” but I crashed to the floor.

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

My wife raced me to the Emergency Room, where I triggered a “stroke alert” response. I recall only the very start of it. My wife was kept outside a curtain, so I don’t know any of the details before I stabilized.

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

By the grace of God, no

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?

Towards end of two weeks in the Intensive Care Unit/neurology (and removal of my AVM by rare cross-craniotomy brain surgery), I had physical therapy, occupational therapy, and speech therapy evaluations in the regular hospital. I spent two more weeks in a rehab hospital for physical, occupational, and speech therapies. I then moved home with six more weeks of physical therapy and occupational therapy in a partial admission “day rehab” at the same rehab hospital. My total was more than two months of rehab.

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

My left side was paralyzed from the shoulders down – it was near total from the ribcage down. (I had no balance – I couldn’t stay up on all fours.) My left shoulder/arm/hand was moderately impaired. I have no real cognitive deficits per se, but my mental processing is disabled in high-level speed and volume capacity. My AVM was at the border of the frontal and parietal lobes, bleeding into the frontal lobe in the right hemisphere. It fractured me emotionally.

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

It’s a mixed bag. I got up on a board and surfed just three months “post op” (against a “no contact sports” order). I’m physically stronger and even faster than I was pre TBI. But, my mental processing speed and capacity are still disabled. A bipolar diagnosis a few years pre TBI (likely due to progressive blood flow abnormality) appears to have been rectified by the AVM removal. But, while my mood is more stable, I still struggle to figure out my new personality. My general emotional state is different and strange.

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

I miss the lightning-fast mental processing and the seemingly limitless volume capacity. I miss not having to relearn every maneuver in black belt karate and fighting, downhill (telemark) skiing, and all other physically demanding things I’d been doing. I miss the 6-6.5 hours of sleep per night without ever napping or feeling tired.

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

I like that I care about the real suffering in the world (i.e., not my own, by comparison), in the midst of which I lived and rehabbed. I like having a far more stable mood and seemingly being cured of bipolar disorder. I’m looking forward to this second chance to fix past mistakes and live as God wants me to. And to never, ever, fear anything in the world again – other than God.

What do you like least about your brain injury?

I dislike needing way too much sleep and always being tired no matter what I do or don’t do. I don’t like figuring out my new altered personality, my future career, and even my likes and dislikes. I don’t like having to relearn every advanced physical maneuver and regaining my previous mental processing speed and volume capacity.

Has anything helped you to accept your brain injury?

I have been greatly helped by my undying (and now bulletproof) faith in Jesus Christ; by my eldest son, who is bipolar (now I want him scanned for an AVM too) and is the only one in my family who understands my continuing emotional turmoil; and by the support of my close friends in Christ and by my BFF of 45 years.

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

I look, speak, and act “fine,” so family (except my eldest son) and others don’t really understand my continuing emotional turmoil and new personality. So, I keep my inner feelings mostly to myself (and to my BFF, to my eldest son, to my bible study group, and to my therapist).

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

I was kind of a homebody before, so my social life is not much different. But, busy, noisy places, like crowded restaurants, create a sensory overload that can become overwhelming, especially after high-stress or high-volume days. It’s like I can hear every individual sound of 100 people, intercoms, TVs, and devices all blaring at once. I just want to scream, “Will everyone please just shut the f#@k up!?”

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

I’m so undeservedly blessed that I don’t have or need a caregiver anymore. My wife had to do it for the first few months after I moved back home, but I’ve been mostly on my own since then. My “emotional caregivers” are probably my BFF, my eldest son, my bible study group, and my therapist.

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

I can’t tolerate the blatant dishonesty and BS involved in practicing law anymore (especially litigation, where it’s the worst) – not my own, but that of others who simply “double down” when I catch them and call them out. Far too many “judges” seem even worse than the lawyers. My BFF and I have done construction rehab work, and we just launched a demolition and construction company. In ten years, I hope it will be my main source of oncome, with my eldest son working with us and me taking only select legal work “on the side” (which sounds like Heaven). I wrote a book on God’s miracles in my experience. I hope to write more and to speak to inspire and help others overcome their crises and follow Jesus Christ.

Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Don’t try to force yourself back into who you were; you simply aren’t that person anymore and never will be again. I always say that as well as I’m doing now, “everything is different” somehow. Embrace who you’ve become and the power your experience and resilience have given you to overcome any obstacle. And, help others do the same.

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

Thank God constantly for every breath you take; every blessing you have; and even every challenge, setback, and outright sorrow you experience. All these things work together to achieve God’s will to make you stronger and better as the person He wants you to be. And never, ever, sweat the “small stuff” again – life’s just too short.

 

With all God’s blessings to all survivors everywhere,

Steven A. Marderosian

 

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