TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘“Prisoners Without Bars: A Caregiver’s Tale”’

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…

(Clip Art compliments of Bing.)

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Past Blast – “Guest Blogger … Ken Collins – 38 Tips for Living with a Brain Injury”

Past Blast  (originally published December 29, 2014)

SPEAK OUT! Guest Blogger: Ken Collins

(Host on the Brain Injury Radio Network)

offers

38 Tips for Living With a Brain Injury

 

Boy Blogger thOn December 31st, I will have lived with a traumatic brain injury for 38 years. I have used several strategies for co-existing with and minimizing the effects of my TBI. I know now that the brain-injury recovery process is ongoing and that there are four major areas to work on during recovery: (1) Getting Organized, (2) Being Responsible, (3) Following Through, and (4) Moving On. I learned a lot over the years, and I want to share my experiences. I have listed 38 tips (one for each year) that could be helpful to you.

 

1. Regain trust in yourself and in others.

2. Try not to be critical of mistakes you make. In the early years of your recovery, there will be too many of them to count. Learn from these mistakes and move on.

3. Find purpose and meaning in your life again. This will make it easier to get out of bed in the morning. Having a sense of purpose and meaning will give you something to live for and will help you feel worthwhile, help motivate you, and improve your recovery process. You will start feeling better about yourself.

4. Keep stress and anxiety to a minimum every day. Reducing stress and anxiety will Stress free zoneincrease your self-esteem and make life easier. Stress and anxiety trigger the fight-or-flight response in the mid-brain. You don’t have any control over this response because it is part of the Emotional Nervous System. When the fight-or-flight response is activated, it increases confusion and makes it harder to process information.

5. Regain your self-confidence and self-respect.

6.Be proactive.

7. Stay focused, calm, and relaxed as much as possible. This will make it easier to think, and you become less dependent on others to remind you. Becoming more responsible for yourself will build good habits on your part and will improve your self-esteem and self-confidence in the long run.

8. Get a large calendar. Put it up on your wall and use it. Make sure it’s in a location where you will always see it. An iPad (or clone), a smart phone, or a note pad with a calendar and alarm does the same thing. A calendar will also relieve stress and anxiety by helping you stay on task and not forget.

Key rack9. Get a key-holder and put it by your door to put your keys on when you come home. Do this every night so you won’t have to look for your keys in the morning. Starting your day off on the right foot will make your day easier and help to relieve stress and anxiety.

10. Make a “To Do” list to help you stay organized. iPads, iPhones or other smart phones, and note pads work wonders with this. The list will help you and make you feel good about yourself.

11. Making a list before you go shopping will save you money by cutting down on impulse-buying. It will also help you become more responsible and less dependent on others. Being less dependent on others improves your self-esteem.

12. Get lots of rest, and slow down. Many times we try to do too many things at once, and nothing gets done. Sleeping on an issue or concern can be the best way to help you figure it out. Getting enough rest will give you valuable energy to think better and solve difficult situations. Sufficient rest will also relieve stress and anxiety.

13. Set up a routine and stick to it. A routine will make it easier for you to follow through with what you have planned for the day. By doing the same thing every day, you will start building trust in your capabilities again.

14. Eat healthy foods, and get lots of exercise. Doing these things will help you get the blood with its oxygen circulating to your brain.Healthy Foods

15. Get a dog and take it for walks. In my case, I have nine dogs, and they take me for a walk every morning and night! They also give me the unconditional love and companionship I need to feel good about myself and be happy.

16. Find ways to relax that aren’t counterproductive to your well-being. Abusing alcohol and drugs to “relax” is counterproductive. Long walks, yoga, and Tai Chi are much better for you and will make processing and problem-solving much easier. Stress and anxiety will be reduced.

17. Be patient.

18. Pay attention and become an active listener. Actively “hearing” what people have to say is more important than passively “listening” to what they say. Watch their body language. When I get distracted, sometimes it is harder to understand what a person is saying. Stay relaxed and focus. Take deep breaths – nothing works better than getting oxygen-filled blood to your brain.

19. Be around positive people and people who care about you. Nothing is more depressing than listening to someone who’s always complaining about his or her life or about what is going wrong in the world. Become active. Don’t just sit around hoping things will get better. Quit talking about a problem, and do something about it instead.

20. Don’t take criticism personally. When people don’t understand things, they criticize them. Constructive criticism can make you a better person in the long run.

21. Keep an open mind. Remember that your family and friends want to help, but sometimes they don’t know how. Many people don’t understand what you are going through, so don’t hold them responsible for this.Breathe

22. Stay calm; stay relaxed; take deep breaths; and move on!

23. Be careful of those you hang out with because they will set the stage for how you act. Friends who judge others and criticize you aren’t “friends.”

24. Grudges will only hold you back. They will be like anchors and keep you from being able to move on.

25. Lighten up on yourself, your family, and friends who want to help you.

26. Worry less and smile more.

27. Be content with what you have. Others have it much worse than you.

28. Find ways to stay active and be less isolated. Get out of your head and into the outside world.

Never Give Up29. Don’t give up – embrace adversity. Have adversity give you the resolve it will take to get better and improve your life. This will be up to you and no one else. People will be there to help you, but all of the work will be up to you. Use it or lose it!

30. Take ownership of your recovery. Remove the word “can’t” from your vocabulary.

31. Life is hard for most people. Life after a brain injury will definitely be hard, but not impossible. It will get easier over time – be patient! Make the best of every day and move on.

32. Thinking too much about a problem or issue can cause depression. This will trigger the fight-or-flight response, and you will be like a dog chasing its tail.

33. Be good to yourself.

34. Don’t take life too seriously.

Ken Collins for Blog

35. Don’t let the little things get you down. When you think about them too long, they seem bigger than they really are.

36. Don’t beat yourself up over things you can’t control. This will only increase your stress and anxiety and trigger the fight-or-flight response.

37. Be happy with yourself and don’t try to live up to others’ expectations.

38. Most importantly – don’t set unrealistic expectations for yourself. Be strong. Find hope – because with hope, anything is possible!

Stop by the Brain Injury Radio Network to hear Ken. His show airs every 1st Thursday of each month from 5:00p to 6:30p Pacific Time.

Thank you, Ken Collins.

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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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:

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

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New News: . . . Sanctuary Magazine Features an Excerpt from Prisoners without Bars

Excerpt from Prisoners without Bars: A Caregiver’s Tale
in Sanctuary Magazine

presented by

Donna O’Donnell Figurski

Sanctuary is a magazine that seeks to be a catalyst for the inspiration and motivation of women. In their words, “Sanctuary is a community of like-minded women. We have evolved into a destination where our readers can find enrichment for body, mind and soul and where we can share the best of ourselves in order to inspire others.” I am proud to announce that Sanctuary Magazine has published an excerpt from my book, Prisoners without Bars: A Caregiver’s Tale by Donna O’Donnell Figurski.

Click book cover to read complete excerpt.

(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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New News: . . . . . . . . . . . . . . . . . Book Excellence Award!

YAY! I received the Book Excellence Award!

Prisoner without Bars: A Caregiver’s Tale
(a heart-wrenching, yet sometimes, hilarious love story)

presented by

Donna O’Donnell Figurski

FFI am incredibly excited to announce that I have been recognized as a Book Excellence Award Finalist for my book, Prisoners without Bars: A Caregiver’s Tale in the Caregiving Category.

Out of hundreds of books that were entered into the Book Excellence Awards competition, my book was selected for its high quality writing, design and overall market appeal. (Click Book Excellence Awards link above and scroll to page 21.)Happy Girl Book Excellence Award

Out of hundreds of books that were entered into the Book Excellence Awards competition, my book was selected for its high quality writing, design and overall market appeal.

To view my complete award listing, you can visit: Prisoners without Bars: A Caregiver’s Tale Book Excellence Honoree.

thThe book was released in 2018 and is about me, a “forever” caregiver for David, my high school sweetheart, best friend, and spouse after he had a traumatic brain injury. David was not expected to survive his three brain surgeries in January 2005, but he DID! Triple YAY!

Prisoners without Bars: A Caregiver’s Tale is perfect for survivors of brain injury and their family and friends. It will also appeal to anyone who wants to curl up and read a heart-wrenching, yet sometimes hilarious love story.

You can get a copy for yourself at:

Amazon

Barnes and Noble

Indie book store

All reviews and ratings are greatly appreciated at:

Goodreads

Amazon

Barnes and Noble

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post:

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.anim0014-1_e0-1

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

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)

As I say after each post:

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

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

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

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

 

Past Blast: “Brain Injury Resources – Unleashed Talents”

“Brain Injury Resources – Unleashed Talents”

(originally published July 29, 2014)

presented by

Donna O’Donnell Figurski

 

Can TBI Unleash a Talent That We Didn’t Know We Have?

 

Brain th-2TBI survivors are usually defined by others in negative terms. Survivors are often seen as people who are no longer able to do something they once did easily or as people who are physically disabled. It has become strikingly evident from the interviews on this blog (Survivors SPEAK OUT!) that TBI survivors, once they have accepted the new normal of their lives, often show immense courage and determination. They have aspirations and exhibit motivation that is intensified or that wasn’t even known to exist. Here are two videos that show a positive outcome from TBI.

The first video is long (1 hr, 5 min), but it is mesmerizing. In it, neurologist Dr. Darold Treffert discusses (with videos) the “savant syndrome.” It is thought that some abnormality in the brain unleashes a skill that normal people find to be phenomenal. At 29 min 20 sec into the video, Dr. Treffert discusses “The Acquired Savant” – a person who has become a savant after a brain injury. Although becoming a savant after a brain injury can happen, it’s rare. But, any model of the brain has to be able to explain the savant syndrome. Dr. Treffert suggests that the brain comes “fully loaded with software” and that the normal functional brain eventually suppresses much of its intrinsic “software” to reduce stimulation. This means that we all may have suppressed talents.

The second video is much shorter (15 min) and is relevant to all TBI survivors. Ann Zuccardy redefines what it means to be smart. A person may define himself or herself by a certain talent or ability. Does one’s life then become unfulfilling when that skill is lost as the result of a brain injury? Ann Zuccardy, who was affected by a brain injury, tells us that the loss of a dominant skill allows a person to nurture and/or develop other skills that may have been ignored. These other skills can be as useful as or even more impressive than the dominant one was.

(Clip Art compliments of Bing.)

(Photos compliments of contributor)

 

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