TBI – Survivors, Caregivers, Family, and Friends

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Surviviors SPEAK OUT! Marie Cooney

SPEAK OUT! – Marie Cooney

by

Donna O’Donnell Figurski

 

Cooney, Marie Sailboat

Marie Cooney – 1st Sail post-TBI

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

Marie Grace Cooney

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

Saint Paul, Minnesota, USA

3. When did you have your TBI? At what age?

June 29, 2005, at the age of 44

4. How did your TBI occur?

I had been a professional stagehand for approximately 20 years. We were setting up for a Carlos Santana concert. Years later, I learned that it was a very unusual setup, where two diamond-shaped trusses were to be built onto the stage. But when they were flown out, they extended over the audience. A co-worker had just yelled that it was a very dangerous situation. As I crossed from the stage-left side of one truss to the other side towards center, I noticed in a flash that there wasn’t any stage below me. A friend told me that I tried to cover my head protectively as I flew off the edge. I landed head first on the cement floor of the Xcel Arena, and many people thought I was dead. Another friend jumped to my aid to slow down the profuse bleeding. When my body went into seizures, those who witnessed the injury knew I was not dead. Thank God, the paramedics arrived within minutes, and I was transported to Regions Hospital’s Trauma Center.

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

Apparently I yelled out a horrible cry, which got the attention of everyone within earshot. My friend Colette, who tried to warn me of the imminent danger, closed her eyes and prayed, “Please God, don’t let Marie die!” Years later, my friend Michael told me that he heard my head crack like a bowling ball being smashed on the ground and that I “danced the Mariachi without the music.” My friend Melissa jumped to my aid to slow the bleeding. Aaron assisted her when I started to come to and tried to get up. Jeff, Chip, and other stagehands told me not to move – that I was hurt. I later learned some were afraid I might have broken my neck or injured my back. Matt was the first stagehand to reach 9-1-1 on his cell phone, though I understand that many others tried simultaneously. I do NOT remember any of this, though I have been told by friends that they will never forget.

I realized there was a serious problem when I opened my eyes at the hospital and saw my friend Sherri. “What are YOU doing in a hospital?” I asked. “No, no, no!” she corrected me. “I’m here to get your keys!” “Why?” I asked. “I need to take care of Tucker….” “You’re not going anywhere!” she explained. As I touched my head, I felt tremendous pain and saw blood on my hand and myself. I realized I was the one in the hospital!

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

I was transported to the Regions Hospital Emergency Room. There I was stitched up; they did scans of my head; and I had X-rays taken of my neck, back, and hands. I was then transferred to their Trauma Center, where a nurse was always in my room. Unfortunately, I was only kept there for two days because I seemingly made sense, which I don’t remember, and I could go to the bathroom by myself. I also think they might have thought I lived with a person – instead of my dog, Tucker! Melissa and Sherri kept asking if they could call my Mom. I was too scared to tell them that all I could remember was the picture of the rotary-dial phone we had when I was a child and the number. I could not remember where my mother or either sister lived. I didn’t know I had such a thing as a cell phone and hoped I’d figure it out when I got home. I kept repeating over and over, “I had a previous head injury. My records are at Noran and Abbott.” Then I’d fall asleep again, only to tell the next person the same thing at the next location.

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, physical, speech, or other)?

I wish I had done rehab at Regions Hospital. But when the doctor wrote orders for physical therapy, I asked if I could go to some place closer to home – to where I could walk. I wish he had had the sense to tell me I had a serious injury and needed a hospital familiar with TBIs. I also went to counseling in the town in which I lived. I eventually went to a work hardening program, where they evaluated both my physical and my cognitive conditions. As an outpatient, I saw a neuropsychologist and speech therapist at Regions. I was also treated by a neurologist, physiatrist, migraine specialist, urologist, optometrist, psychiatrist, neuro-ophthalmologist, and various counselors who included EMDR (Eye Movement Desensitization and Reprocessing) and PTSD (Post-Traumatic Stress Disorder) therapy techniques and DBT (Dialectical Behavior Therapy). Eventually I was a resident at Courage Center in Golden Valley, Minnesota, as part of their Chronic Pain Program. A number of months later, I also participated in the Community Reintegration Program (for people with brain injuries) for only four of the typically six-month program because of medical denials by State Fund Mutual, the workers’ compensation insurance company.

How long were you in rehab?

I am nine years post-injury. I see my neurologist and my psychiatrist   approximately every six months. I also see my neuro-ophthalmologist as needed for optic-nerve injections for eye pain.

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

I have severe sensitivity to lights, sounds, crowds, and chemical smells. A visor and dark amber, Churada-framed, protective eyewear are essential parts of my daily wardrobe. I carry various types of earplugs to dampen what is called “auditory discrimination” – the inability to filter out foreground and background noises. I’ve peed in my pants in the presence of Clorox. I have been told this and the extreme nausea could have been the results of petite seizures. I am, or have been, on various anti-seizure, anti-pain, anti-depression, and anti-anxiety medications. I have also been treated for migraines. My balance has been helped and my pain has been lessened by pool therapy. I have experienced many emotional changes throughout my recovery process. I would consider myself among those with heightened emotions post-TBI, as opposed to having dampened emotions. Greater self-awareness and an ability to deal with fluctuating emotions have come with time.

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

At first, “everything” was worse. I wanted the “old” me back, at least some of me. I didn’t ever want to be a stagehand again. Then I wanted to. Then I was afraid it could kill me. I thought the oversensitivity ruined “everything.” I used to sail competitively. I wanted to be able to sail, but I knew a knock to my head could kill me. I wanted to move back to the East Coast, where I was raised, but my medical treatment and my legal help were here. I was a ship without a rudder, lost at sea, and escalating depression was overwhelming me.

Things have gotten better, as I have learned to use compensatory strategies to live my life as it is now. I have had many supportive people who have helped me with many aspects of my life. “I have reclaimed my life!” I proclaimed one day. “Work comp no longer owns me!” I told my counselor, “I bought a sailboat!” Although I didn’t return to competitive sailing, this was an extremely important step for me. In ways I was now capable of, I was reclaiming parts of my life that I had loved before. I wasn’t afraid of denials or surveillance by workers’ compensation. I was choosing life for me! And now, I have a wonderful new partner, Nanette, who loves me just the way I am and is supportive in every way, without being “my caregiver.” We care about each other tremendously.

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

  1. Sailing competitively with my friend Steve and others at the Wayzata Yacht Club.
  2. Working in theater, especially running a spotlight and seeing all types of shows!
  3. Friends and family. I missed my nieces growing up. I lost touch with too many friends, until Facebook.
  4. Being “fearless,” not in the sense of being cocky, but rather in being totally comfortable and at ease.
  5. The wonderful sense of spontaneity. Also not being so tired so much of the time.
  6. My dog, Tucker!
  7. The feeling that I could do anything I wanted and go anywhere I liked.
  8. It is hard to be a high-achieving person who is really smart, but who has a TBI and feels so dumb.
  9. I started arguing with people I love. I felt so misunderstood, especially in the first few years.
  10. Writing plays and being active in the arts community, in addition to my theater career.

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

  1. Choosing to sail again and sharing that love with others.
  2. I didn’t know if I would ever have a partner again. Amazingly, I met Nanette! There is hope – even if relationships end.
  3. My dog, Rico, and Nanette’s cats, Shiloh and Hildy!
  4. Making new friends; getting back in touch with people I thought I’d never see again.
  5. Hugs and kisses. Forget formalities! Let me hug you tightly! So many friends have been hugged or have hugged me, now that I have returned to stagehand work in a very limited, but fulfilling, capacity.
  6. Joy in life again – even if it is simpler. (A brush with death makes simple things seem to be much more!)
  7. Renewed relationships with my family, who didn’t understand so much at first. I traveled to Ireland with my Mom recently.
  8. A spiritual awareness that we are not alone. I “experienced” my Dad during my first head injury, even though he had died years earlier. I would not admit this at first, but now I do freely.

13. What do you like least about your TBI?

Extreme hypersensitivity, fatigue, predictably unpredictable days, difficulty making plans.

14. Has anything helped you to accept your TBI?

Time, time, and more time. Rest, rest, and more rest. Others with TBIs. Courage Center friends and staff. A sense of humor. My lawyer, Gerry, who helped put things in perspective when “everything” seemed out of control. Writing a blog for Lash and Associates. Co-facilitating a brain injury support group. Reclaiming scripts.

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

I lost my housing multiple times. I didn’t know if landlords were trying to get around service animal laws, if my anger was too piqued, or if I lost my sense of diplomacy. Courage Center and HUD tried to help me, but I still had to move, which was a bigger mess each time. Now I can take partial responsibility, but it is really important to know your rights, the laws regarding reasonable accommodations, and anti-discrimination laws. Losing my housing caused extreme difficulties with my family and some close friends. I felt blamed and condemned for things that were not my fault.

Now I live with my partner, Nanette, in Saint Paul. We also have my sailboat in Duluth, where I can sail within the safety of Duluth Bay or out on Lake Superior, depending on the weather and my crew. My relationships with my family have improved with time, and I’m back in touch with various friends. However, I have also lost some friends, which is sad. As Nanette says, “Communication is key!” Try to keep the doors to communication open, no matter what part of the TBI equation you find yourself in.

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

It is hard to make plans with others. For the best results, they need to understand and accept that I might become extremely fatigued, need to take medications, rest, or even go to sleep. After six years, I have been able to attend some theater shows. I ask people to stay, even if I need to leave, so I can live vicariously through them. Loud music, concerts, dances, and strobe lights are all OUT! Quality time with smaller groups is better than lousy time with large groups. At family events, I plan breaks and rest periods.

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

I am a person with a Traumatic Brain Injury, and I am my own caregiver. Through others I know, I have learned to understand and appreciate the dedication, love, fatigue, frustration, and various emotions that caregivers also experience. Nanette is someone who cares deeply about and for me, as I also care deeply about and for her. But it is important that we each have some sense of autonomy and a shared life, without Nanette’s being in the role of “caregiver.” Having said that, I must also confirm she is the most understanding, accepting, and supportive person in my life.

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

Marie Cooney Playwright

Marie Cooney – Playwright

We laugh about this! I love Nanette, but I absolutely cannot tolerate the Minnesota winters. She has been telling me it’s okay to leave and calls me her “Wandering Pirate Girlfriend.” I finally believe her. I plan to spend as much time as possible doing things we love together, especially attending many smaller theaters and dance productions, which are not as assaulting. I enjoy traveling between Saint Paul and Duluth and will be getting away for at least some parts of the winters. I want to return to being a playwright, to participate in the Playwrights’ Center in Minneapolis, and to travel to wherever the production of scripts might bring me. In ten years? I will be almost twenty years post-TBI. I could be doing almost anything – with rest, as needed!

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.

Don’t be in such a rush to get back to your previous life or move on from your injury. Time, time, time! Take the time you need. Rest, rest, rest! It’s a long road to recovery. Laughter truly is the best medicine. There will be good days, and there will be bad days, and there will be good ones and bad ones again. Stay in the hospital or in rehab as long as you can, and get as much help as you can from the people who really know about brain injuries. (People who say they are “experts” aren’t always telling the truth.) Get a great QRC (Quality Rehabilitation Consultant) who is recommended by your lawyer, not by the workers’ compensation insurance company.  Don’t take it personally – you are in a system that is designed to cut you off as soon as possible. “Powerhouse” attorneys can be “slaughterhouse” attorneys. Get personal recommendations. A great TBI attorney will listen to and respect you, not treat you as someone who doesn’t know anything. Offer reasonable accommodations, as needed. If an attorney won’t work with you, he or she won’t work for your greatest good, so run the other way.

20. What advice would you offer to other TBI survivors?

Get all the help you possibly can from every source possible. A physiatrist or a PMR (Physical Medicine and Rehabilitation) specialist is an important part of your team. If you don’t have one, get one. Keep a sense of humor. Admit when life’s unbearable. Believe that it will get better.

Do you have any other comments that you would like to add?

Cooney, Marie Sailboat 2

Marie Cooney – Skipper – pre-TBI

In our support group, NOTHING IS OFF THE TABLE! Everything is open for discussion, no matter what. Some thing you are afraid to discuss might be the very thing others need to talk about. Take chances. Share all your feelings. Accept tears of sadness and tears of laughter. Both are welcomed and accepted, as is everything in between.

 

Thank you, Marie, 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.)

(Photos compliments of Marie.)

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

 

 

 

Category:

Survivors SPEAK OUT!

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Survivors SPEAK OUT! Richard Johnson

SPEAK OUT! – Richard Johnson

by

Donna O’Donnell Figurski

 

RJohnson-Portrait1. What is your name? (last name optional)

Richard Johnson

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

Minneapolis, Minnesota, USA

3. When did you have your TBI? At what age?

My TBI happened October 2003. I was 53 years old.

 4. How did your TBI occur?

While cleaning the gutters on my house, I took a step from the roof onto the ladder. The ladder slipped, and down I went – hitting my head on the cement slab in my driveway.

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

 My daughter – 13 years old – saw me fall and ran over. When she saw that I was unconscious and bleeding, she called 9-1-1.

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

I was admitted into Hennepin County Medical Center (Minneapolis) in the Brain Injury ICU. I was placed into a medically induced coma. I had a craniotomy and a tracheotomy. A feeding tube was put in, and a cast was put on my left arm, as I broke my wrist in the fall.

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

Yes, a medically induced coma for 3½ weeks.

8. Did you do rehab? What kind of rehab (i.e., Inpatient or Outpatient and Occupational, Physical, Speech, Other)?


After being weaned from my coma, I was fitted with a protective helmet and transferred from HCMC into Bethesda Hospital in St. Paul for my second post-injury month. I began with inpatient cognitive, physical, speech, and occupational therapies. The trach was removed, but not the feeding tube. After Bethesda, I was transferred to Regions Hospital (St. Paul) for my third post-injury month. In Regions Hospital, I continued with inpatient physical, speech, and occupation therapies. The feeding tube and cast were removed. In January 2004, I was released from the hospital, and I went back home. I then began speech and occupational therapies as an outpatient at Courage Kenny Rehabilitation Institute (Golden Valley) until October 2004.

How long were you in rehab?

I had rehab a full year from the date of injury until I was able go back to my “pre-injury” job.

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

Aphasia is my main problem. Talking is an ongoing issue, and, in my humble opinion, that issue will never go away. Most of the time it’s not a problem, but my aphasia comes and goes. Background noises are problematic – another side effect. It’s really hard (if not impossible) to filter out background noises, especially in “loud” or “busy” situations. I also have minor balance problems, so I’m very careful when walking.

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

My “new” life is just slower than it was before. It’s not worse – only different. I look carefully at everything that I am going to do. I question if I will need help, and, if so, I make sure to ask for help. Fatigue is a problem. I get tired more easily.

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

I am unable to ride my bike anymore. I don’t think I have the balance to do it, and I refuse to find out. One brain injury is enough for me.

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

I enjoy being a co-facilitator for the Brain Injury Support Group at the rehab institute that I used during my outpatient therapy. I also became a member of the Minnesota Brain Injury Alliance Speaker Bureau.

13. What do you like least about your TBI?

I cannot multitask. It’s way too hard to be focused on the task at hand.

14. Has anything helped you to accept your TBI?

My family has helped me more than anything else. They understand me.

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

Home life – Not much is different, except I need more help to finish tasks/projects.

Relationships – Old friends are harder to find or meet up with, but I think a lot of that is because their lives haven’t changed.

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

With aphasia, I do not often go to parties or events, especially if they’re loud. It can be almost impossible to filter out background noises, unless I’m with people who understand my limits.

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

My wife is my main caregiver. I remember what my injury did to my wife and kids. So I just try to make sure their lives are getting better as well.

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

My future plan is to retire in 6 years. In 10 years, I hope that my recovery is still going well.

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.

I wish I had known about support groups. Not just for me, but for my family as well. It would have given them (and me) a better understanding of the recovery process. TBI affects the entire family, and a local support group lets us know we are not alone.

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

Don’t look for a book to tell you what to expect. There is no such thing. You can Google all day long, but there is no easy answer for a traumatic brain injury. But Google will help you find online support groups, where you can post questions or vent issues that you’re fighting with.

 

Thank you, Richard, 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.)

(Photos compliments of Richard.)

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

Category:

Survivors SPEAK OUT!

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Survivors SPEAK OUT! . . . Catherine (Cat) Brubaker

SPEAK OUT! – Catherine (Cat) Brubaker

by

Donna O’Donnell Figurski

Catherine (Cat) Brubaker

Catherine (Cat) Brubaker

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

Catherine Brubaker

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

Tempe, Arizona, USA    
CatBrubaker@gmail.com

3. When did you have your TBI? At what age?

The first TBI was in 2010. I was 39. I had another TBI in 2011 at age 40.

4. How did your TBI occur?

1st TBI: assault     2nd TBI: car accident

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

I couldn’t get up without assistance.

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

1st TBI: After I went to see him, a doctor called 9-1-1. I was then treated in an Emergency Room. 2nd TBI: I was first treated in an Emergency Room. My treatment was then handled for a month by St. Joseph’s Neurological (Phoenix). That was followed by my living in a nursing home. I was then an outpatient.

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

No – both times.

8. Did you do rehab? What kind of rehab (i.e., Inpatient or Outpatient and Occupational, Physical, Speech, Other)?

Yes. I rehabbed as both an inpatient and an outpatient. I had all three therapies (occupational, physical, and speech). I highly recommend a recumbent tricycle.

How long were you in rehab?

I don’t remember.

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

Balance. Boundaries. Personality. Independence. Ability to function in everyday things

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

It’s taken everything – career and relationships. Walking was learned twice…But given everything, now I can ride my trike and paint…freedom.

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

Independence. Freedom. People saw me as capable. I felt I was dating material.

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

I got to ride my trike across the country.

13. What do you like least about your TBI?

It’s frustrating beyond belief. It is like a cage I can’t get out of. I sometimes can’t find words. I don’t like the headaches. I need to plan ahead. My thinking is sometimes not clear or engaged.

Catherine (Cat) Brubaker riding her recumbent tricycle on 5,200 mile diagonal crossing of USA - from Washinton (state) to Florida

Catherine (Cat) Brubaker riding her recumbent tricycle on 5,200 mile diagonal crossing of USA – from Anacortes, Washinton (state) to Key West, Florida (June/November 2014)

14. Has anything helped you to accept your TBI?

Triking with Dan Zimmerman. He deals with stroke every day.

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

Yes. I lost a 14-year relationship. I get angry and act out. I also have PTSD (post-traumatic stress disorder). It’s hard to maintain relationships – even new ones. I can’t say what I want to say. Miscommunication happens all the time.

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

Yes. I lost friends. I had been in a partnership. I stayed in my room for a year after I lost the partnership, my primary relationship.

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

I was in my mom’s care. One morning in November, I found her passed away. Now my caregiver is my brother. He and I live in my mom’s house.

Catherine (Cat) Brubaker - taking a break from riding in Glacier National Park in Montana (August 2014)

Catherine (Cat) Brubaker – taking a break from riding in Glacier National Park in Montana (August 2014)

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

Ride my trike. Inspire others to get up off of the couch. I hope to stop people from being depressed and to find purpose.

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.

Let go of “mad.” Earlier. I wish I did. There is so much less to carry around, and it makes room for “happy.” It gives you real joy and purpose.

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

If you can, adapt. You will overcome. Get a trike. You can balance three wheels, and it gives you freedom. I cherish mine.

Catherine (Cat) Brubaker "Triking Acoss America"

Catherine (Cat) Brubaker “Triking Acoss America”

(You’ll have to “peel it from my cold dead fingers.”) I have control, joy, and freedom. It allows me to explore the world and see new places.

 

If you want to learn more about Catherine’s adventures of Triking Across America go to Spokes Fighting Strokes Tour.

 

Thank you, Catherine, 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.)

(Photos compliments of Catherine.)

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

Category:

Survivors SPEAK OUT!

Tagged with:

Survivors SPEAK OUT! Melinda Murphy

SPEAK OUT! – Melinda Murphy

by

Donna O’Donnell Figurski

 

Melinda Murphy with TBI

Melinda Murphy with TBI

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

Melinda Murphy

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

Middletown, Ohio, USA

3. When did you have your TBI? At what age?

February 9, 2011 I was 40 years old.

4. How did your TBI occur?

I fell down a flight of steps into a basement.

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

Immediately, although the TBI was not diagnosed for quite some time.

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

None

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

No

8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)?

I have had all of the above, and I am still in therapy. I have had some fantastic therapists over the years, and I just have to say that they are the key in so many ways. I don’t know where I would be without them.

How long were you in rehab?

They did in-home rehab and therapy with me for about 5 months, if memory serves me. I do not remember most of those first months, though, so I could be lying to ya :).

9. What problems or disabilities, if any, resulted from your TBI?

I have horrible balance. I live with headaches constantly. My vision and hearing have both been affected to the point that I can no longer go out in public on my own because of the amount of stuff coming in, so to speak. I miss my church and independence. I have short-term memory loss. I lost organizational skills and basic life functions, like just being able to make simple decisions. I lost a lot of other skills, like math and English. I have trouble speaking; I lose words before they hit my mouth. Many times my brain gets over-tired and just quits working at all. I can’t explain it. I can’t drive. I could go on, but…LOL.

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

Both – honestly! No one being truthful would tell you there is nothing that he or she wouldn’t give back. It’s hard, and it stinks a big chunk of the time. Learning to live again and differently is the hardest thing I have ever had to do, and I didn’t live the easiest life, so…. Learning how strong I am, though, and learning to receive (which is not something I was used to and I think not many of us are used to) is a tremendous thing. Learning of people and the spirit and nature of them – that is a very rich gift I have been given through this. Learning to be okay with not being okay – that is again a huge thing that has bettered my life. So, I think that – as sad as it is at times and as hard as it is (and it is) – it is also a blessing.

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

Almost everything – I miss being able to drive; I miss my independence; I miss hot meals because most days I cannot cook for fear I will forget to turn off the oven; I miss my job and clients; I miss my social life; I miss being able to keep my house clean (balance issues keep me from up and down and forward and back motions); I MISS MY CHURCH!

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

I enjoy the quiet. Everything is quiet in my world now, out of necessity. It’s very nice. Quiet is better than you think it is – I had forgotten how nice. I think most of us have. I like things that I have learned from having a TBI and the people whom I have met because of it. I like the growth that I see in me because of my TBI.

13. What do you like least about your TBI?

Almost everything

Melinda Murphy - after fall

Melinda Murphy – after fall

14. Has anything helped you to accept your TBI?

Time, only time. People can tell you what they want, and they can try and say anything, but until your brain is ready, well hang it up. It’s been three and a half years, and I have just accepted it this year. When you are ready, it will happen. I will say this about acceptance. People say that once you accept it, you will be fine and everything will be easier. In the end, that is correct and true, but let me tell you, acceptance itself is hard. It is the toughest thing in the world to acknowledge that you – the person you are now – are broken and that that is okay. Getting there and getting through it takes time and patience from yourself and your caregiver.

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

Yes. I touched on my home life earlier – it is difficult to live with a TBI. Memory, balance, and sensory issues affect me far more than people could know, and my home very often suffers. I often feel like I am a burden on my family and on those relationships. When you are dependent, the structure of the relationship is changed.

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

Yes. All of my relationships changed – I am dependent now. That is a hard place to be. It stands in the way of traditional friendships. (At least, it feels that way on this end.) When you need, people tend to view you differently. We all have those friends, don’t we? I had them before my accident and still do, but those friends were different from all my other friends and from my social circle. I can’t complain now because I used to do it. I was no more aware of doing it then than are so many who are unaware of my situation now. I can say that I am blessed beyond measure to have a handful that do not fit into that mold and are there for me. God is good all the time because without them I would be in a home.

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

I am. I live alone and do the very best I can. I had to move in with my family just after the accident because of seizures and not being able to even stand up or sit down on my own. I was 100%-dependent then, but I moved back on my own as soon as I was able.

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

I would love to be fully functional. By that, I mean holding a job (any job) – just feeling productive and serving – and doing things more independently. (I have a servant’s heart and desire nothing more than to be helping others in any way the good Lord leads.)

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.
You’re okay just the way you are.

It took me forever and a day to accept that, and, frankly, I am still getting there. I know those words probably mean no more than anyone else’s, but I pray they touch someone. I always had a perfect picture of what healthy looked like in my mind, and I was working so hard to get there until one day, I realized that I was already there. I don’t need to walk up those steps upright like my neighbor. If I get up all the steps with my tail in the air and bear-crawling like a two-year-old, but I make it to the top, well by Jove, I can climb a flight of stairs – can’t I? It matters not the way you get there, only that you do. The fact that you do is what makes you as healthy and whole as that beefcake next to ya. Find a way.

20. What advice would you offer to other TBI survivors? Do you have any other comments that you would like to add?
My faith has held me so strong from day 1 of this. Without it, I’m not sure I would have survived. My God is greater than my broken brain and all the problems and mess that come with it – make no mistake.

Murphy, Melinda

Melinda Murphy

Advice? I am finding that there are tools everywhere for me. Some work and some don’t, but never, ever stop looking. I still find therapies and little things that can greatly improve things in my world all the time. If there is even the slightest bit of hope that something can bring a touch of independence or relief, then you need to jump with both feet. Stop thinking, all you caregivers. Just try, try, try. You never know what will work. The more you get out there into the world of TBI, the more you find. Never stop looking; never stop trying.

 

Thank you, Melinda, 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.)

(Photos compliments of Melinda.)

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

Category:

Survivors SPEAK OUT!

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Survivors SPEAK OUT! . . . Daisy Lou

SPEAK OUT! – Daisy Lou

by

Donna O’Donnell Figurski

Daisy Lou

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

Daisy Lou

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

Boyertown, Pennsylvania, USA

3. When did you have your TBI? At what age?

The first one was on July 6, 2012. I was 30 years old. The second one was in February 2014. I was 32 years old.

4. How did your TBI occur?

Someone ran a stop sign and T-boned my car for the first one. I don’t remember the accident, but my car was totaled. For the second one, I fell in the street on six inches of ice.

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

In August 2012, I started having back problems. I realized in November that I was having other problems, like nausea, dizziness, balance being off, sleeping all the time, noise sensitivity, and headaches, among a multitude of other problems. But I waited until December (5 months after my accident) to talk to the doctor. For the second one, I realized I had a problem a few days after I fell, when my nose started dripping and I started sleeping a lot. I wasn’t sick at the time.

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

None

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

No

8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)?
How long were you in rehab?

For the first TBI, I did physical therapy for a month and a half as an Out-patient. I did biofeedback with a neuropsychologist for four months. For the second one, I took a week off of work. That’s all.

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

I sometimes have balance problems. If I try to get up too quickly, I get dizzy. I have lots of memory problems, anxiety, impulsiveness, and trouble concentrating. I tend to tell people things three or four times because I forget whether or not I’ve told them whatever that thing happens to be. I get frustrated very easily. I have trouble talking and finding words. I don’t handle stress very well, and sometimes I can’t handle it at all. I get tired very easily, and sometimes I have to take a nap in the middle of the day.

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

It’s better in the fact that I don’t remember things. So, if something happens that is upsetting, I soon forget it. But that’s also worse because I forget things I want to remember. I’ve learned to become more patient with myself and with other people.

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

I miss being able to explain something to someone and have them understand what I’m saying. Now I can’t seem to find the right words.

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

When my brain is functioning on a capable level, I enjoy explaining to people what a TBI is like and how it affects you. To some people who seem interested, I give the address of an interesting blog to look at, so they can understand TBI even better.

13. What do you like least about your TBI?

I dislike forgetting things and feeling stupid all the time. I feel like a part of my brain has gone missing, and no matter how much I search for it, it continues to hide from me.

14. Has anything helped you to accept your TBI?

Time and talking about it with friends

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

Not really. It’s more that I forget where I put things more often, so I’m continually asking someone if they’ve seen the items I’m looking for. But my relationships haven’t really changed, and my home life hasn’t changed.

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

I always was a loner, but I’m more of a hermit than before. I tend to stay in more often or go places by myself, instead of asking someone to go with me. Even if the person is on the way to wherever it is I’m going, I don’t call them because it seems like too much work to have to drive to their house and then talk to them until I drop them back off at their house.

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

Myself – I don’t have a caregiver. Although, I live with my mom, and she’s the one I’m always asking where things are.

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

Right now, I’m just concentrating on making it through the day. I have no future plans, except to take things 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 TBI survivors with your specific kind of TBI.

Write everything down! If you have memory problems, it makes your life so much easier when you can look at a piece of paper and say, “Oh yeah, that’s what I wanted to do!”

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

Rome wasn’t built in a day…. It’s frustrating to suddenly have some part of your body go berserk on you, but don’t beat yourself up. A very important part of your anatomy was bruised and battered, and it takes time for it to heal. Everyone recovers at a different rate, so don’t expect the same results as someone else with a TBI.

Daisy Lou

Daisy Lou

 

Thank you, Daisy Lou, 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.)

(Photos compliments of Daisy Lou.)

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.

Category:

Survivors SPEAK OUT!

Tagged with:

Survivors SPEAK OUT! Julie Kintz

                                                        SPEAK OUT! – Julie Kintz

                                                       by

Julie Kintz

Donna O’Donnell Figurski

 

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

Julie Kintz

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

Fort Wayne, Indiana, USA     juliekintz@gmail.com

3. When did you have your TBI? At what age?

1991     Age 21

4. How did your TBI occur?

Car accident

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

My car went off a cliff in California. There was a house being built, and the construction workers saw it happen as they sat on the roof eating their lunches. They are the reason I am alive today. I doubt that I would have ever been found. I never did get to thank them.

6. What kind of emergency treatment, if any, did you have (e.g., surgery, tracheotomy, G-peg)?

I had surgery to relieve the swelling in my brain.

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

Yes.     One week

8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)?

I did not have any rehab, although I really needed it.

How long were you in rehab?

I never had the opportunity to attend a rehab center.

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

I find it funny that this question is difficult to answer. I do not see them as “disabilities” as much as I see them just as the realities of my life. My condition has become the way it is. I normally do not think about it very much. For instance, the left side of my body is weaker than my right. My left leg is three inches bigger than my right leg and has little muscle tone. My legs look like the “before” and “after” pictures for when someone begins to work out. I used to think of myself more like “the elephant man.” Then I learned to accept me with all my flaws because I have so many positives going for me. The effects of my injury that cannot be seen are frontal lobe damage (both on the right and left sides) and damage to my hypothalamus/pituitary axis. I have learned great coping skills, but I still struggle with ADHD (attention deficit hyperactivity disorder) and other frontal lobe issues, including memory issues.

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

I do not remember my life before the accident. I lost the memory of my life previous to the accident. I still struggle with both long- and short-term memory issues. I have learned to accept where I am at the moment. Doing this helps to empower my future. At any second, we can decide if we are going to be a victim or a survivor. I may struggle with an issue for a bit. Then I decide that the only way to go is forward and determine what will help my goals become reality.

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

I wonder what I would have been capable of doing if not for this brain injury.

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

I have the ability to understand the shortcomings of others, even if they do not want to understand mine. I also have embraced the idea that this is my journey, and I try to make the best out of what is in front of me.

13. What do you like least about your TBI?

The struggle of living with chaos in my head can be overwhelming. The lack of understanding about brain injury by our society makes everyday life a bit tougher than it needs to be. It is the reason why I am working on starting a brain injury center – so one could say “I found my purpose by having these struggles.”

14. Has anything helped you to accept your TBI?

The more I understand who I am outside of my injury, the more I have learned to love myself unconditionally. By doing this, I am not afraid to try new things.

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

Yes. Emotional dis-regulation was not understood when I had my accident, like it is now. My family did not know how to deal with it, so I was left to fend for myself.

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

Absolutely! I really need a lot of downtime, even 23 years post brain injury. I enjoy being with people, but eventually I need time in a quiet place. I do spend a great amount of time alone.

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

I have been my main caregiver since the accident.

18. What are your future plans?

I will be starting graduate school in the fall in a Purdue University program: Interpersonal and Organizational Communication Theory. By attaining this degree, I hope to help those with brain injury live a fuller and more productive life.

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

I am currently working with some wonderful professionals to open a not-for-profit brain injury center where I live. My dream is to build centers all over to educate survivors, their families, and professionals about brain injury. The center will also focus on the unmet needs of those with brain injury. These are considered secondary to the original problems. These would include, but not be limited to, the following: low self-esteem, making and keeping friends, and learning to communicate effectively.

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.

Come to terms with where you are in life. Instead of spending time wishing the injury did not happen, accept it and figure out what you can do to get you to where you want to be. Accepting that your brain injury cannot be changed frees your mind to figure out how to get you to where you want to go. If you do not know where you want to go, then try new things. Finding your passion will help you heal both your body and your mind. What we think really does affect how well we heal. You will get what you look for. If you are looking for how bad life is, you will find things to verify it. If you look for the good, you will find that as well. Finding who you are will help put you on a better path.

20. What advice would you offer to other TBI survivors?

Find who you are – not who people say you are, but who you truly are. Let your struggle build you to be the best you can be. Look at it as if you were writing a book. Every day, when you wake up, ask yourself, “What do I want to write in my book today?” You can choose to write about how you overcame a struggle just to get out of bed. When you conquer that struggle, it will fuel you to set a new goal. Everyone climbs a mountain one step at a time.

Do you have any other comments that you would like to add?

It is important that you find a support group in your area. Support group members can be a great deal of help in figuring out what doctors and professionals in the area will be good, or not so good, for you to see.

Also there are a ton of Facebook support groups; find some that you feel comfortable in. They can be a huge source of support and knowledge. Please keep in mind that people can use these groups to prey on people who are desperate for a cure. A red flag should go up if they, or people they know, are making money off what you are sharing with them. Ask for research. If the research is not from a reputable source (for example, the Mayo Clinic), then research it some more. Ask others on the site if they have heard of it. There are others on the site who will help with the research. If it sounds to good to be true, it normally is.

Educate yourself about brain injury.  Make sure you know what your MRIs (magnetic resonance imaging) and other tests tell you about your injury. You will need to learn to be your own advocate. But, getting an advocate can be of great help when you are too fatigued to advocate for yourself. A great place to start is at the Kintz, JulieBrain Injury Association of America (BIAA).

I also have a talk show, Quantum Leap, on the Brain Injury Radio Network. On it, I discuss current research, as well as interview professionals who work in the brain injury world. The network has shows seven nights a week. Volunteers who either have a brain injury or are caregivers run the Brain Injury Network. Just as brain injury is different in everyone, the hosts have different approaches to their shows. Everyone should be able to find a show that he or she enjoys.

 

Thank you, Julie, 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.)

(Photos compliments of Julie.)

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.

Category:

Survivors SPEAK OUT!

Tagged with:

Survivors SPEAK OUT! . . . . . . . . Rick Von Linsowe

 

SPEAK OUT! – Rick Von Linsowe

by

Donna O’Donnell Figurski

 

Rick Von Linsowe

Rick Von Linsowe

 

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

Rick Von Linsowe

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

I live in Goldsboro, North Carolina, USA. I had my TBI in Tucson, Arizona, USA.

3. When did you have your TBI? At what age?

My TBI happened on August 26, 1998. I was 22 years old.

4. How did your TBI occur?

I was addicted to alcohol and drugs and fell down a hill outside my apartment complex. While in a blackout from alcohol and drugs, I flopped off a retaining wall and smashed my head on the pavement below.

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

I believe a man found me on his way to work in the early morning hours. I was unconscious and needed immediate surgery.

Von Linsowe, Rick in Hospital

Rick Von Linsowe – in Hospital

6. What kind of emergency treatment, if any, did you have (e.g., surgery, tracheotomy, G-peg)?

I had a right frontal craniotomy to relieve a massive hematoma that was crushing my brain. My chances of surviving where very slim, and the doctor told my dad after the surgery that he didn’t believe I would make it through the night.

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

I was in a coma from August 26 until late September, so it was approximately 4 weeks. I have heard other accounts from family members, but 4 weeks is my most accurate estimation.

8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)?
How long were you in rehab?

I had speech, occupational, and physical therapies for 1 year as an In-patient. Then I continued with physical therapy only for 2 years after the other therapies ended.

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

I had a long list of problems, including anger issues, balancing, and right-side paralysis. I still work out and exercise on a daily basis to combat the physical problems. My anger has subsided by finding the positive in every day.

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

Since having my TBI in 1998, my life has drastically improved. I am married with a 6- year-old daughter. I went to

Rick Von Linsowe - Collecting Degrees - Post-TBI

Rick Von Linsowe – Collecting Degrees – Post-TBI

college and earned a Bachelor’s Degree in Psychology and a Master’s Degree in Counseling and Psychology. I am a Life Coach with my own business that helps individuals move past the obstacles that are holding them back. I am directly contracted with a brain injury rehabilitation center. I help motivate the residents to complete therapy and have lots of fun while doing it! My website is Rejuvenate Life Coaching.

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

Sometimes I think about the friends who I used to have and my popular social life, but most of my old friends are dead from drug- and alcohol-related injuries. I have to remember that life is about quality and not quantity. Today I want quality friends who will be there for me when I need them the most.

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

My life is not weighed down by the past, hurts, habits, or hang-ups! I am a new person who has created an awesome new life – drug- and alcohol-free!

13. What do you like least about your TBI?

Some people judge me before they actually get to meet me. I have a wobbly walk, and I can’t swing my right arm as well as my left, so many people ask me if I had a stroke or they want to know what is wrong with me. Sometimes it frustrates me, but I don’t let it get me down. I know what other people say about me is not a reflection of who I am, but rather, it is a mirror of how they feel about themselves.

14. Has anything helped you to accept your TBI?

I learned that only I am in control of my feelings and that nobody else can control how I feel. I learned to smile a lot and laugh often. Having a TBI is not the easiest thing in the world, and I have learned through my work in the field of mental health that many people are worse off than I am. That’s why I spend so much time giving back to the communities that I live in and helping the people around me. I started a new website for recovering addicts to tell their stories of triumph over addiction. The website is Clean and Sober Voice.

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

Yes. I carried anger around like an old friend. It was there to protect me when I felt attacked. My relationship with my wife was very difficult because I did not know how to treat a woman, and I had anger issues on top of it! I can’t believe she has stayed for 15 years! We still get up each day and give it another shot. She is a truly an inspiration to me.

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

My social life went from a big network of party friends, who only wanted to see the fun side of me, to a small network of good people, who stand by me and my family.

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

I am 100% independent, but my wife has been my main caregiver since the beginning. She used to work in the nursing home where I was placed to live out the rest of my days. She has stayed with me on this amazing journey for 15 years.

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

My future plans are to grow my business of Life Coaching and Recovery Coaching and to help individuals overcome the obstacles holding them back. I am the administrator to many groups on Facebook to help give back to those who need support, so nobody ever has to go through what I did to become clean and sober. The addiction support group, Clean and Sober Voice, is designed to support recovering addicts and helps them tell their stories to the world. Telling your story is healing power! I also have a unique Brain Injury and Addiction Support Group that caters to the support of individuals recovering from brain injury and have addiction-related issues. You’re always welcome to join either or both sites.

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.

My helpful hint is to remember how your anger can affect your whole family. You are in control of your emotions! Make the best out of each day. Start out by taking baby steps. Work into being able to gain stamina, and take bigger steps to accomplish your goals!

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

 

I would offer to other survivors my advice to keep moving forward and don’t look back! Find something positive in every day. Do not try to find the “old” person you once were. The “old” you is gone, and you should work on creating the “new” and awesome you! Remember, you are the only one who controls your feelings. When you are in complete control, nobody else can tell you how to feel!

Von Linsowe, Rick 2

Rick Von Linsowe

Thank you, Rick, 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.)

(Photos compliments of Rick.)

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.

 

Category:

Survivors SPEAK OUT!

Tagged with:

Survivors SPEAK OUT! Jodi Jizmejian

SPEAK OUT! – Jodi Jizmejian

by

Donna O’Donnell Figurski

Jizmejian, Jodi Pre- Accident 2

Jodi Jezmejian – Pre-TBI

 

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

Jodi Jizmejian

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

Fresno, California, USA

3. When did you have your TBI? At what age?

September 8, 2011   I was 47, almost 48.

4. How did your TBI occur?

Roof crush due to a single vehicle roll-over

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

A woman in a house by the road heard the accident. My 16-year-old daughter was in the accident also, but she was ejected from the vehicle and landed in the dirt on the side of the road. She was coherent and gave the lady my husband’s cell-phone number. He was called after a 9-1-1 call.

6. What kind of emergency treatment, if any, did you have (e.g., surgery,

tracheotomy, G-peg)?

I was told (because I don’t remember anything) that I had a craniotomy. I did have a tracheotomy and a g-tube (gastrostomy tube). I’m sure I had multiple surgeries because I have scars that I didn’t have before. I was told that I had multiple facial breaks and other broken bones. My husband told me that the doctors were happy that they could say – after 7 days – that they saved my life.

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

Yes, I was in a coma. I was told it was for 30 days, but my current memory starts December 1, so I think I was in some sort of coma from September 8 to December 1.

8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)?
How long were you in rehab?

I’m still doing physical therapy. I did physical, occupational, speech, and recreational therapy when I was in Santa Clara Valley Medical Center. I was there from December 1, 2011, until I came home on December 29. I did physical, occupational, and speech therapy as an Out-patient for a few months after I returned home.

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

My balance was affected for sure. I also have several other issues: vision, hearing, fine-motor skills, slower (speed), reasoning, and personality.

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

I think my life is better. Pre-accident, I worked all the time. My husband and I owned our own business, so I worked all the time. After my accident, he said he “fired” me because I didn’t show up for work. I abandoned my “job.” He is being funny, but I really don’t work anymore because there is no way I could have returned to what I was doing.

Jizmejian, Jodi Accident

Jodi Jezmejian – 2011 Accident

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

I miss being able to play tennis.

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

I have more time to do things that I’m physically capable of doing.

13. What do you like least about your TBI?

I don’t like my balance issues. I also dislike that my head feels “big/heavy/muffled,” and there is a “numbness/heavy/big” feeling of my right arm and leg.

14. Has anything helped you to accept your TBI?

Jesus. I’m a positive person, so having the mentality of “It is what it is” helps me accept that “_ _ _ _” happens.

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

Yes.

Home life – I’m now home most of the time.

Relationships – I now have time to develop friendships.

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

I don’t drive right now and don’t know if I’ll ever be ready to drive. My social life is pretty much reliant on my husband to drive me around, so if I want to do something and he doesn’t or he is busy, I don’t/can’t do it. I’m also reliant on friends to take me places.

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

My husband is my main caregiver. I do understand what it takes to be a caregiver, but there’s nothing that I or he can do to change that. Hence the marriage commitment, “Until death do us part.”

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

I hope someday to be able to drive again and to play tennis. I want to write and speak to help other TBI survivors.

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.

Accept that you have a “new” normal and that you will never be the person you were pre-TBI. Learn to like the new you and make friends with the new you. Realize you weren’t “picked” out to have a TBI. There is always someone else who has it “worse.” Research Nick Vujicic, Life Without Limbs. When I started to have a pity party or a “woe is me” or a “life isn’t fair” attitude, I think of Nick.  I also tell myself that we all have a cross to bear, meaning an unpleasant situation or responsibility that you must accept because you cannot change it.

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

Never give up, but never expect things or you to get back to “normal,” i.e., the way they were pre-TBI. Learn to like yourself in your “new” normal. Realize you survived for a purpose. Do that purpose. If you don’t believe in Jesus, then start there and do whatever research you need to. Publicly and verbally accept Jesus as your personal Lord and Savior. Then I’ll see you in Eternity. God bless. Thank you for letting me participate.

Jodi Jezmejian - Post-accident

Jodi Jezmejian – Post-accident

 

Thank you, Jodi, 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.)

(Photos compliments of Jodi.)

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.

 

Category:

Survivors SPEAK OUT!

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Survivors SPEAK OUT! . . . . . Cezar Cehan

SPEAK OUT! – Cezar Cehan

by

Donna O’Donnell Figurski

Cehan, Cezar After

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

Cezar Cehan

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

Denver, Colorado, USA

3. When did you have your TBI? At what age?

Age40

4. How did your TBI occur?

My TBI wasn’t really an “injury.” I discovered a (benign) tumor (acoustic neuroma) inside my skull, due to some “weird” sensations, balance issues, vision disturbances, etc. But they weren’t so serious, and I opted for a radiation-type of intervention (Gamma Knife). However, the tumor was already large (3.5 cm), so the radiation did not stop the growth. When it got to almost 4 cm, I had to ask for a surgical intervention. That surgical intervention was the actual “injury.” I’ve been told that the surgery lasted more than 10 hours.

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

I first knew I had a problem in 2004, due to some (minor, but repeated) issues with balance, walking, and vision – especially when I was tired. (Since I had quite a demanding occupation at that time, the tiredness was almost continuous.)

6. What kind of emergency treatment, if any, did you have (e.g., surgery,

tracheotomy, G-peg)?

I had Gamma Knife. (They literally screw a metal frame into the skull, but it’s not as bad as it sounds.) I also had brain surgery to remove the tumor.

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

No

8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)?
How long were you in rehab?

Yes. I did both – In-patient and Out-patient. They kept me in the hospital for an entire month. (I actually had three brain interventions, besides the tumor removal itself. They also had to insert a shunt – a tube to help me with the hydrocephalus that developed.) Other patients left the hospital after a week. They also told me that I would not be able to walk all that much, given the state of my body. (I had taken steroids and stayed in bed without moving for about one year, so my muscles were pretty weak.) I’d been given a wheelchair and a walker (just in case I wanted to “be brave” and walk on my own). I had some great physical therapists – with huge hearts, who encouraged and challenged me to become a “walking” human being again. Fortunately enough, I didn’t have any mental impairments (at least from my perspective ☺). Also my speech was only a little bit affected, and I am actively working on that. (In the past, I studied Bel Canto, i.e., voice training.) After the “official” physical therapy ended, I continued at home on my own (since there wasn’t much I could do all day anyway!). However – being human – once I reached a level where I could function again independently, I slowed down my practice. That means that I would probably walk better (or even be able to run) and I would have improved my balance if I had continued the exercises with the same determination that I put in when I could not walk at all.

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

Balance is an issue that I have. Fatigue also. As for personality, I would say that the change was two-fold. On one hand, I tend (sometimes) to feel embarrassed and intimidated when I have balance issues in public. My self-esteem seems to want to be lower, and I want to apologize. On the other hand, all this happening is, for me, a “rebirth,” if you wish, a “second chance.” I feel now that it is “my duty” to “be the best that I can be,” to live by my values, to go for what I feel that my purpose is. I appreciate more “what is.” I choose to be present and expanded, since I’ve been given this “second chance” to experience consciousness with which to create my reality. I feel that it’s my duty now to create it – to the best of my potential – by expanding my understanding of the world. Whining, feeling self-pity, or focusing on shortcomings – these are not options that I entertain. They would be of no help anyhow.

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

Both. I could call “worse” the fact that I have less energy (so I need to take naps during the day) and I get tired easier. Also my balance is “funny.” (Sometimes I carry a walking stick – which I also find “trendy.”) Perhaps my patience with other people’s melodrama and self-imposed limitations is shorter (but I’m already better with that). I could call “better” the fact that I feel that I am now “allowed” to focus on my values, on my purpose (the way I feel it). I feel more connected with “what is.” Considering that I have already been “on the other side of the fence,” fear is just a word for me now. (For most situations, of course, I am still human.) Even the fact that I am not able to do now the previous (money-making) activity that I used to do, it’s probably a good thing, after all. This “limitation” has the gift to guide me into doing what I really love to do – assisting people to let go of the limitations of their own minds and to become extraordinary in what they are.

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

That’s an interesting question – because it made me think. I didn’t think of this before.

Why would I even think of “what’s missing”? I choose to focus on “what I CAN do,” on “becoming.”

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

Somehow, in a weird way, I feel freer – of the cultural conditionings and of the “you have to do this because that’s nice and people would like you.” I am able to think in terms of the values that I have, instead of needing other people’s approval for what I do. I feel that I am “allowed” to be more creative. (Note: It’s not that somebody stopped me from being creative and living by my values before the TBI. But, weirdly enough, suffering frees people of their ego’s limiting stories that they “should do this” or that they “could never do that”!)

13. What do you like least about your TBI?

Again, a tricky question. One rule of my life is to only do things that would help me. Somehow, I fail to see how focusing on what I “don’t like” would be of any help – for me or for anyone else reading this ☺.

14. Has anything helped you to accept your TBI?

Meditation, acceptance, and NLP (neuro-linguistic programming). Also continuous reading, studying, learning, and maintaining a live curiosity about life. Never surrender on despair. I accepted the possibility of death. I mentioned that I was immobilized in bed for almost one year. All that time, I never stopped reading, learning, or, when my eyes would hurt, listening to books or audio programs.

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

Yes, it did, unfortunately. My income dropped dramatically. Also, this situation put my new wife through tremendously challenging emotional turmoil. For her, besides the pressure of having moved to a new country, living in a different culture, and not knowing the language well, was my health condition. No wonder she was scared, stressed out, and pressured. She took good care of me, but her emotional state was affected. I can see why. I’m also sure that (at least at times) I wasn’t the most pleasant sick person that one could meet ☺. So, all in all, our relationship suffered.

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

I hear with only one ear now. So, loud environments make me really uneasy. I cannot hear properly what people say. Since my balance is “shaky,” I have to pay attention to the surfaces that I walk on. Uneven surfaces are not fun ☺.

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

If by “caregiver” you mean someone who “takes care of me,” I don’t have one. I am alright on my own now.

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

I plan to get better and better at the things that I can improve – like my balance, my muscles, and speaking. Other than that, I plan to learn to live perfectly well with what I have and to be an inspiration for people who tend to let themselves down and surrender to the stories of their ego. I plan to learn from everything and everybody around me and to become the best that I can be (that is, there is no need to compare myself with others’ possibilities).

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.

To be able to reach a destination, you need to know where you are now – and to accept that. If I want to go to Los Angeles, and it so happens that I am in New York, it makes no sense to start complaining and feeling bad about the fact that I AM in New York. It is only after I accept that fact that I am able to design a trip and to start going on that trip – towards Los Angeles. Similarly, I had a tumor. This was a fact. (Of course, I had my episodes of tears and “why me?!”) It took me a while until I took that fact as “what is.” But once I did it (experientially, not only logically or intellectually), a lot of things became clearer to me. This did not mean that I “surrendered.” Not at all – acceptance is not surrender! But I was able to “design” a path – a “trip” – in a detached manner, rather than in an emotional one (which never leads to good results – you know that!).

So, the lesson, the understanding, that I gained is this:

– if you feel and look THROUGH the life-situation you find yourself in, you’ll only create more of that.

– if you don’t want to create that, the trick is to accept that life-situation (that it does exist) and look AT it, as an observer, as a scientist of your life (that you are, actually, because you’re much more than the body you see in the mirror).

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

Besides the “lesson” above, consider this: all your life, you have experienced all sorts of emotions, sensations, situations, etc. You’ve been happy, sad, healthy, ill, energetic, and exhausted. You’ve experienced love and being out of love, etc. Beyond all that, is there a part of you that is constant among all of those things? Consider for a moment – what is constant all the way? Is it your emotions? Perhaps not. Is your energy level? Perhaps not, also. What is it for you? Get in touch with that. You may discover who you really are.

 Cehan, Cezar Before

Thank you, Cezar, 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.)

(Photos compliments of Cezar.)

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.

Category:

Survivors SPEAK OUT!

Tagged with:

Survivors SPEAK OUT! . . . . . . . . Kevin Middleton

SPEAK OUT! – Kevin Middleton

by

Donna O’Donnell Figurski

Kevin with his granddaughter

Kevin with his granddaughter

 

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

Kevin Middleton

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

Courtenay, British Columbia, Canada     
5gemm9@gmail.com

3. When did you have your TBI? At what age?

Circa 1973

4. How did your TBI occur?

Birth defect

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

1977

6. What kind of emergency treatment, if any, did you have (e.g., surgery,

tracheotomy, G-peg)?

I had 7.5 hours of surgery to remove two blood clots and to clip off several aneurysms. An AVM (arteriovenous malformation) and a haematoma were removed December 05, 1977.

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

No

8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)?
How long were you in rehab?

No. I was just sent home and told “No school for a year.”

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

Neuropsychological tests in 1978 and 1994 showed identical results. Short-term memory and recall in the 7 percentile mean that I am disabled. Anger issues ensued, born of frustration over continually forgetting.  Editing oneself is challenging.

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

Since I was quite young, the loss of a photographic memory was a challenge. I withdrew from society. I have no close friends. I have many acquaintances, but I don’t like to socialize. The plus side is that my intellect increased from the removal of the blood clots. The downside is that by then I resented school. Learning took four times longer, and it was difficult to write an exam. My greatest joys are my five children and ten grandchildren.

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

My memory

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

Family

13. What do you like least about your TBI?

I dislike the fact people say they forget too. They don’t understand the frequency or the fact you lost your kids more than once or your wallet eight times.

14. Has anything helped you to accept your TBI?

Time helped. Being involved with a brain injury society has been beneficial. Even having friends who understand is helpful.

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

I experienced a divorce. I attribute partial blame to my not being rehabilitated professionally.

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

Yes. Though I have been married 23 years, I like being by myself with my dogs. My wife socializes without me.

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

My wife is my main caregiver. It was she who said, “There’s something wrong here.” Due to her, I sought out help, which she supported.

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

I’m 54, so retirement is my goal. I’m so done with my brain injury. I like to help online those who are just beginning the healing journey.

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.

It’s not your fault that you forget…it’s the fault of the brain injury. In other words, don’t take forgetting personally. I beat myself up for this all the time. However, why am I apologizing for something I have no control of?

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

Don’t get caught in the trap of chasing your past self. Before you know it, it’s 40 years later, and still your former self is bigger than life itself. My 18-year-old self had not fathered, had not grandfathered, had not held a job for 14 years, nor owned several businesses, yet he still was bigger than what I have accomplished. How ludicrous is that? Embrace who you are…a survivor…and move forward because that is where the future lies. Leave your past self in the rear view mirror where he/she belongs.

 

If you’d Like to learn more about Kevin Middleton, please visit his blog at My Broken Brain.

 

Kevin's brain.

Kevin’s brain.

Thank you, Kevin, 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.)

(Photos compliments of Kevin.)

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.

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