TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Memory loss’

Survivors SPEAK OUT! . . . . . Rainbow Artist, Orlando L. . . . (Kevin Orlando Lau)

SPEAK OUT! – Rainbow Artist, Orlando L.

(Kevin Orlando Lau)

by

Donna O’Donnell Figurski

 

Rainbow Artist Orlando L. (Kevin Orlando Lau)  Brain Injury Survivor

Rainbow Artist Orlando L. (Kevin Orlando Lau)
Brain Injury Survivor

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

My name is Kevin Orlando Lau.

(I’m also known as the Rainbow Artist, Orlando L., in the art community.)

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

Currently I live in Vancouver, British Columbia, Canada, as a Canadian.

I was born and raised in Hong Kong, China, as a Chinese.

My art website is http://rainbowartistorlando-l.pixels.com

My art page on Facebook is https://www.facebook.com/RainbowArtistOrlando.

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

I had my brain injury back in 1996 when I was age 24. I don’t think my injury is a TBI. I am guessing it is an ABI (acquired brain injury). The doctor at the ICU (intensive care unit) mentioned a medical term to me, but I couldn’t understand it back then, nor do I remember it now. She translated it to me as “partial brain damage.”

4. How did your brain injury occur?

My injury was caused by severe poisoning. I was committing suicide by swallowing a whole jar of an extra-strength painkiller. I wanted to end my hellish life on earth once and for all. I was a heavily abused child – physical, verbal, sexual/molestation, emotional, and psychological. I observed lots of chaos with my relatives, like gang relations, violence, prostitution, excessive gambling, sex addition, and hardcore drug addiction. I had watched my mother’s brother sexually molest my sister and all my female cousins, individually and multiple times. They were only 2-6 years old. I was around 10. I was raped in 1993 by a trusted man twice my age. I attracted a possessive and abusive boyfriend in 1996. He constantly threatened to kill me and my cats if I left him. I worked in the family business of my parents seven days per week, 10+ hours each day, for many months in a row without a break. (All day-off requests were denied.) I was completely stressed out and exhausted!! Death was the only way out….

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

I first realized I had a problem when I started vomiting neon-green liquid non-stop after I had those pills. I vomited at least eighteen times within a 24-hour period. Then when I woke up in the ICU, the doctor told me that I suffered a brain injury. She said she didn’t expect that I would have any memory. She hadn’t expected me to wake up and to be talking to her. She hadn’t expected that I would survive at all, due to the overwhelming amount of poison I had consumed. She explained that 99% of the people who had the same experience as me did not survive and that 99% of the 1% who survived stayed in a coma for the rest of their lives. So, she found it a miracle that I was alive and talking. She said I must have an important mission in life that I have not yet fulfilled – that I was not ready to go.

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

Kevin Orlando Lau  Brain Injury Survivor Rainbow Artist Orlando L.

Kevin Orlando Lau
Brain Injury Survivor
Rainbow Artist Orlando L.

I honestly have no idea. I think I never asked, and they never told me.

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

I am assuming I wasn’t in a coma. Even if I had been, it must have been a very short one. I never asked, and I don’t recall anyone ever saying that I had been in one. I only remember being brought to the hospital unwillingly. The next thing I remember was waking up in ICU, thinking to myself Is this what heaven looks like? – because I was so sure I would be dead.

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?

Although the brain doctor at the ICU suggested to me that I see her at least three times per week, I never had the luxury of seeing her again. I also didn’t have any kind of treatment or rehab after I got out of the hospital. I WISH I had had some rehab because it would have made my life so much easier. But, rehab of any kind was forbidden. My family said my injury was a disgrace to them and would create negative publicity for their social status/circle. (My mom was the district president of a major charity organization that same year.) I was strictly instructed to just act “normal” in public. I was not allowed to see any doctors, nor have any treatment or rehab. I was also not allowed to ever talk to anyone about my brain injury because I only had “food poisoning” and nothing more. They put me back to work ten days after I got out of the hospital! All these years, I have dealt with my brain injury by myself – in the dark and with endless confusion. I never talked about it until after my mom retired in 2012. I am planning to seek help now. I just need to figure out how.

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

Oh, there are so many problems…. Here are a few. My personality and self-image changed. (I don’t recognize myself. When I look in the mirror, I might ask, “Is that me?” – as if I am just meeting that person in the reflection for the first time.) I can’t tell the difference between reality or imagination or dreams. Time, space, people, and dates – nothing makes sense. My short-term and long-term memories are affected. I have a huge problem with faces, names, locations, passwords, spellings, and numbers. I have difficulties translating thoughts into verbal words, which are often spoken with a delay. I lost body awareness. I have a low energy level. I am very underweight (5 ft. 10 in. and 110 lbs.). Time always seems to be “missing,” and I have no idea what I do during the “missing” hours. Being late and missing appointments is the norm. Plus, I have other stuff, like depression, a mood disorder, a food disorder, insomnia, allergies of all kinds (from food to smell to chemicals), and many new fears and strange phobias of all types (e.g., fears of small flying objects; of oceans, lakes, and rivers; of doorbells; of telephone rings; etc.)…SIGH!

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

I guess the answer depends on one’s perspective and point of view. My life is both worse and better!

My life is worse because I feel like I am a stupid, walking zombie – incapable of paying for and supporting my own life. I am forever stuck in my own invisible jail, being misunderstood by society.

My life is better because I got the chance to know my true self so much deeper and to live a brand new life with more kindness and compassion to myself and to others. I can appreciate everything in this universe in a whole new light. I have learned to see good in the bad and to see beauty in everything. I have learned how not to take life and ordinary things for granted. I feel more connected with nature and all lives in creation. Having the time and opportunity to learn who I really am as a soul is truly the greatest gift of my injury. It makes all my life changes worthwhile.

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

Actually I miss several things. I miss being self-sufficient and independent. I miss life without debts. I miss the ability to learn new things without forgetting them. (I mean I still can learn, but the knowledge simply won’t stay for long. I can watch the same movie or read the same book or email repeatedly, and the content will still feel new.) I miss the freedom of travelling around without panic and stress. I used to love taking flights and driving cars, but now I don’t enjoy them anymore. I miss tasting the rich flavours of good food too. Nowadays everything tastes like cardboard – kind of boring.

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

Artwork by Rainbow Artist Orlando L.

Artwork by Rainbow Artist Orlando L.

Creating art!! I never knew I could paint at all. I suddenly started watercolour-painting in 2012 during a 16-week neurofeedback brain treatment. As a gift, I got a used brush and some watercolours from my therapists. The next thing I know, I just picked up that brush and started painting! It was the first time in my life. Watercolour-painting quickly became a new hobby, and now it’s part of who I am. I have no training in painting at all. I still don’t have any today. I don’t know how I paint my own art because I cannot remember how the paintings were created. I just keep creating them to make myself feel happy. Art became my new life! I enjoyed very much the discovery of this new side of me and of this new artistic experience. It’s a most pleasant surprise!

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

I dislike seeing me as being slow, indecisive, forgetful, withdrawn, over-sensitive, and super-dependent. I really dislike being so dependent on my loved ones. It’s my heart’s desire to give financial support to them (particularly to my parents and relatives as they get older) and to make sure they all have a good life. But now, I rely and depend on them. I can’t function without them. It makes me feel horrible and useless – as if I am human garbage and a burden forced upon them. It breaks my heart because I am the one who committed the “crime” of turning me into a brain-injured person. Only I should be in “prison,” not them!! It’s not fair.

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

Spirituality, meditation, and my cats have helped me to accept my brain injury big time! My cats are my best friends and my life-support. They stayed with me regardless of what condition I had. Their unconditional love, company, and loyalty to me gave me lots of strength, support, comfort, and growth. They taught me to be myself and to accept myself exactly the way I am. Spirituality changed my outlook towards life positively, helped me to realize life has bigger and deeper meanings, and showed me that my injury is only a spiritual learning experience to expand my consciousness. Meditation gave me inner peace, higher knowledge, and the wisdom to accept what happened, instead of victimizing me with guilt, shame, and resentment.

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

My brain injury changed everything immediately. My life was like living in a painful hell. Everyone took advantage of me. I became easily used, controlled, and manipulated because I lost the ability and the willingness to confront or to fight back. I was like a living puppet, like a slave. People were free to toy with my emotions and to undress me anytime without concern for my feelings. I was lied to all the time because people knew I would accept all information without the ability to judge them. All relationships at all levels fell apart. No one cared about my injury, except me! It took me another twelve years after my injury before I could move out of my parents’ house and to be strong enough to end the abusive relationship with my boyfriend. He had stalked and harassed me for years after our breakup in 2008. I ended up moving to another city in 2012.

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

Gradually all my friends stayed away from me (literally no more contact) when they realized I was “different,” and I do mean ALL, including my best friends! I suddenly had many social anxieties that I never had before. I became very afraid of human beings – I developed a phobia of mankind. The anxieties made me feel very uncomfortable in public, crowded, or noisy places. Interacting with people face-to-face (including one-on-one, even in private) or on phones gave me intense panic. In fact, seeing people is enough to trigger me. I feel as if I am an alien creature living among the human race and everyone out there is trying to hurt me in some way. I avoid social interactions as much as I can. I stopped trying to fit into the world.

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

My answer depends on the definition of “caregiver.” If it means financially, like giving me shelter, food, rides, etc., then my “caregiver” is my family and relatives. If it means giving me brain health and assisting me in my life physically, mentally, emotionally, and spiritually, then my “caregiver” is me and my spirit-guides. Ever since my injury, I can clearly get telepathic directions from invisible entities to help me cope with my daily life and activities – much like a 24-hour nurse – which I appreciate very much. No, I don’t fully understand what it takes to be a caregiver because I have no experience in that. I can only imagine that it might be similar to my caring for my cats with lots of unconditional love. I really only know what it means to be a brain-injury survivor.

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

I have no future plans really…because I can only handle one day at a time. So, I just do my best to stay in the present moment. I do fantasize that I will have my own art exhibition around the world one day – to share my stories and my art. I would like to teach people what brain-injury survivors can achieve and to let other survivors be proud, be inspired, and get motivated to excel and reach their potential. I guess I wish I could do something to give other survivors hope and fuel their inner fire for continuing on bravely to conquer their battle. I believe ALL survivors are warriors. They are still capable of doing great things for themselves and the world. Survivors are not lesser or weaker – we are simply more unique and special! Survivors are strong souls and great teachers. We understand our strengths and that peace comes from within.

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

My advice is to be kind to yourself and to stop comparing the post-injury you to the pre-injury you because you will never be that person again. Release the idea, and let it go. Instead, start loving, accepting, and embracing the “new” you like you have a brand new life in the same body. Relearn your boundaries, abilities, and potential. You are absolutely perfect the way you are now. Be open and receptive to all kinds of alternative non-medical healing-methods because they are excellent tools to help you and your new life. Neurofeedback is the best thing that happened to me. It completely flipped my life upside-down for the better. I am eternally grateful for that. You might want to do your own research on that. Always have faith in yourself and in your capability. Your body’s ability to heal itself is far greater than anyone has permitted you to believe. Your soul always knows what to do to heal itself. The challenge is to silence the mind. Meditation can help with quieting it.

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

Art has been very healing for me. If you have never tried art or using creativity as a form of home-based therapy, I highly encourage you to try it now! You don’t need to know how or to be good at it. You just need to do it. Let it be a fun game for your inner child to play! The point is to allow yourself to express and release “something” that needs to be out of your system – that needs to set you free! I gained a lot of self-worth, self-esteem, and confidence since I started painting. Nothing is impossible! Miracles happen to those who believe. Faith is the key to a universe full of blessings. You are way STRONGER than you can imagine. That’s why you have this life. Truly FORGIVE yourself for your injury. Blame will not bring you any healing – only unconditional love and inner peace will. Be the biggest supporter of yourself. You deserve it. Love, Light, and Strength to you all.

You can learn more about Kevin at Rainbow Artist Orlando L. You can also see more of Rainbow Artist Orlando l.’s work and an article by him in “Disabled Magazine,” titled, “Peace, Love, and Neurofeedback.”

Kevin Orland Lau Rainbow Artist

Kevin Orland Lau Rainbow Artist 2013 after Brain Injury

Thank you, Kevin, for taking part in this interview. I know that it was a painful journey for you as you examined and faced the wounds of your brain injury. I am grateful to you for your courage and hopeful that by sharing your story you will be offering hope, comfort, and inspiration to my readers.

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

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.

(Photos compliments of Kevin.)

Survivors SPEAK OUT! Bart Boughner

SPEAK OUT! – Bart Boughner

by

Donna O’Donnell Figurski

 

Bart Boughner - TBI Survivor

Bart Boughner – TBI Survivor

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

Bart Boughner

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

St. Williams, Ontario, Canada

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

37

4. How did your TBI occur?

I fell about 5 feet off a step ladder at work, striking my head on the concrete foundation.  It happened ~45 minutes before the end of the day…the day before my daughter’s 8th birthday.

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

The seriousness of my fall was realized about a half hour later. My leg couldn’t hold me, and I had blood coming from my ear and cuts on my wrist.

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

I was in the local hospital for about five hours. They didn’t ship me earlier to a trauma center because they didn’t think I would make the trip. They took a wait-and-see approach, since the bleeds didn’t change too much. I was in the ICU (Intensive Care Unit) for 1 week, and then I was in the Step Down Unit for another week. I was then moved back to my local hospital for 3 more weeks.

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 outpatient rehab for 1 year for physical, occupational, and speech therapies, then again 2 years after I was hospitalized.

How long were you in rehab?

Just over 1 year

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

Well now, I have an issue with short-term memory;  I severed my olfactory nerve, affecting my senses of smell and taste; I experience exhaustion; I have a problem with sleep; and I have no tolerance.

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

For 11 1\2 years, my life was worse to the point that I gave up. I went into a hole and rarely went out. My marriage went down hill fast, since we couldn’t communicate. My marriage ended September 16, 2013. I lost so many friends and family, some from my own choice. I found it hard to trust.

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

My energy and my love of life

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

Now I have my own independence. My kids chose to live with me. I’m letting go of the past and now living now.

13. What do you like least about your TBI?

Overwhelming situations, severe headaches, lack of patience

14. Has anything helped you to accept your TBI?

The first neuro doctor told me straight out I would be different. Also my new independence is helping me accept my TBI.

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

My injury destroyed everything, but eventually my kids had the chance to know me for myself without people telling them things. It’s the best thing that happened.

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

Yes, I became reclusive and couldn’t tolerate too many people at once. Now I’m better.

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

I am my own caregiver. Yes, I do understand about caregivers.

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

I’m building on my bucket list. I plan to continue enjoying life and laughing with my kids. Soon I will be 50. What I’ll be doing in 10 years is hard to say. I live life day-to-day.

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.

Speak for yourself, instead of letting others do it for you. Realize that the past is the past. Nothing can bring it back. Learn to laugh again and not to be so frustrated when you can’t accomplish things. Find support groups (e.g., Facebook) early.

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

Be strong. Keep your voice, and let it be known. Never dwell on things – they can put you in a deep, dark place with only a small window of light. Believe in yourself. If friends treat you differently, tell them. If they cannot adjust, then let them go on your terms. LIVE, LOVE, AND LAUGH!!!!!!!!

Bart Boughner - TBI Survivor with his children

Bart Boughner – TBI Survivor with his children

 

Thank you, Bart, 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 Bart.)

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.

TBI Tales: Can Music Rewire Brain?

Playing a Mandolin

 by

 Richard Johnson

(presented by Donna O’Donnell Figurski)

 

mandolin-for-gloggtserMy traumatic brain injury took place in October 2003. I did survive (fortunately), but one of the main side effects from my injury is short-term memory loss.

Years ago, I was in a local coffee shop drinking a cup of coffee and thinking – not “Why me? Why me?” but “What can I do to help my short-term memory loss?” The coffee shop had two people playing guitars. One person put down his guitar and picked up a mandolin. They then played three of my favorite songs. What they triggered was like a bolt of lightning had gone through me! I knew right away that learning how to play an instrument, how to read sheet music, and, most importantly, remembering what I just practiced would be the best memory therapy in the world.

When the musicians took a break, I asked about the mandolin. I told the mandolin-player that I had never played any instrument before. I asked if I could chord with less than four fingers (I only have about two-and-a-half usable fingers), and on and on we talked. He showed me a couple of mandolin chords and said to search on Google for two-finger mandolin chords. He told me to buy a beginner’s mandolin to start and to have fun. And that’s exactly what I did. I bought a good-enough beginner’s mandolin from a friend of a friend, found a great local music store that gives mandolin lessons, bought a couple of books and DVD’s, and started playing.

Well, it’s been a few years now, and I play at least one hour every day. It seems to take a month to learn a song. I’m taking the old “practice, practice, practice” route. I’m able to remember and play (most of) those songs without reading the sheet music. If I haven’t played one of those songs in a couple of weeks, I may need to read the sheet music to remember a measure or two.

I wake up in the morning thinking about the songs I practiced and played the day before. I think about the songs I will practice and play that day by “singing” the songs in my head (not the lyrics, but how they’re fretted and picked). When I’m playing, I’m in a whole different world, and the daily toils just slide away.  I’m sure I could refer to my playing-time as “therapy,” but, for me, it’s pure bliss.

In short, playing a musical instrument is one of the main keys I have gained for rewiring my brain. I truly think that beginning and learning a new hobby or new skill is very important, as it makes us think, think, and think. I also believe that playing music, any type of music, all the time helps my brain find those broken nodes and, with its neuroplasticity, “fixes” them. And most importantly, my short-term memory problem is less and less pronounced. Sure, I can still forget what I had for lunch an hour after eating it, but I can bring that memory back a few seconds later. I can still forget who called me earlier today or why, but again it’s easier to make that connection again.

I would like to continue talking, but my mandolin is calling me.

(Richard Johnson’s experience is an excellent example of something I thought might be true – using the playing of a musical instrument to stimulate the brain and thereby help heal an injured brain.)

 

RJohnson-PortraitThank you, Richard, for sharing your story in TBI Tales. I hope that your experience will offer inspiration to my readers.

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

 

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

(Pictures compliments of Richard.)

(Clip Art compliments of Bing.)

 

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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.

Caregivers SPEAK OUT! Diane Caldwell

SPEAK OUT! – Diane Caldwell

by

Donna O’Donnell Figurski

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

Diane Caldwell

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

Columbus, Ohio, USA     ladydi147@yahoo.com

3. What caused your survivor’s TBI?

Car accident – Sept. 24, 2010

4. On what date did you begin care for your TBI survivor? Are you the main caregiver? How old were you when you began care?

I started caring for my daughter after she was sent home from Dodd Hall, OSU, an In-patient rehabilitation facility, in December 2010. I was 53 years old. My daughter was 28.

5. Were you caring for anyone else at that time? (e.g., children, parents, etc.)

Yes. I was caring for my grandson – my daughter’s son.

6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?

Yes. I was employed and somehow managed to keep my job, mainly because I have had the same employer for a 20-plus years. My daughter still required 24×7 care, but I was able to work from home for about 6 months until she could be left alone at home. She was bed-ridden and wheelchair-bound during that time.

7. Did you have any help? If so, what kind and for how long?

No. Occasionally her brother would stay with her while I went to the store, but her behavior was a little scary to him (i.e., she would be talking coherently one minute, and the next she wouldn’t know who he was).

8. When did your support of the survivor begin? (e.g., immediately – in hospital, when survivor returned home, etc.)

Immediately. She was life-flighted from the accident scene and was on life support in critical condition for several days. I went to the hospital daily.

9. Was your survivor in a coma? If so, what did you do at that time?

Yes. I went to the hospital every day, but at that time, the doctors thought she had a slim chance of making it. I still cared for my grandson. I prayed.

10. Did your survivor have rehab? If so, what kind of rehab? (i.e., In-patient and/or Out-patient and Occupational, Physical, Speech, and/or Other) How long was the rehab? Where were you when this was happening?

Yes. She had In-patient rehab (occupational, physical, and speech therapy), and then she had Out-patient rehab when she was sent home. Her rehab totaled about 5 months. I usually went with her to her appointments, as she required special transportation (due to the wheelchair) and was often left waiting for a return ride home. She was afraid to be left alone.

11. What problems or disabilities of your TBI survivor required your care, if any?

Short-term memory problems, emotional swings and instability, suicidal actions, personal safety issues

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

My life is just different now. Some things are better, some things worse.  My life changed dramatically, as I was living alone previously. We walked through some dark days together, so it was very rough at first. My daughter’s personality changed, and her IQ dropped into the mildly retarded range. My daughter knew she was not who she used to be, and she didn’t embrace who she was after the accident for about 18 months. Today, my life is better. My relationship with my daughter has reached a depth most people never get to experience. I learned a lot about myself too, and I became a much more spiritual person. I believe in miracles!

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

Time to myself, freedom to travel

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

Sleeping!

15. What do you like least about TBI?

How it impacts relationships. For a while, I felt like I lost my daughter, even though she was alive. Everyone works through it differently.

16. Has anything helped you to accept your survivor’s TBI?

Yes. I got connected with OSU TBI Network.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Yes. My daughter and grandson live with me and rely on me as a result of the TBI. It’s like being a single mom again.

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

Yes. I am unable to attend functions where I will be away overnight. I don’t like leaving my daughter alone since she started having seizures.

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

I guess I don’t really think about that too much. I would like to be retired by then and do some fun things with my daughter and grandson.

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

Don’t isolate yourself! Learn as much as you can about TBI. Reach out for help. (I didn’t do that enough.) Be patient, loving, and caring. Take it one day at a time.DIane C. daughter

 

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

 

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

(Photo compliments of Diane.)

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

Survivors SPEAK OUT! Pauline Southern

SPEAK OUT! – Pauline Southern

by

Donna O’Donnell Figurski

Pauline with her TBI

 

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

Pauline

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

South Carolina, USA

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

6/22/2012    52 years old

4. How did your TBI occur?

Another 18-wheeler hit the 18-wheeler my husband was driving. I was asleep in the sleeper in the back and got tossed around like a rag doll.

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

I’m not sure who first realized it. Just to name a few issues – I had a problem remembering old friends, finding words, and doing math. I had a shortened attention span and a panic attack every time I got into a car. I was distracted all the time and slept a lot. There is much more. I just can’t remember them all.

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

tracheotomy, G-peg)

I was taken by ambulance to an emergency room in a little town in Iowa. I don’t have much of a memory of what went on, other than that I was treated for nausea and for pain for rib injuries. I don’t remember anything else.

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 Out-patient physical therapy, occupational therapy, and speech therapy. I spoke with a psychologist. Now I am doing PTSD (post-traumatic stress disorder) therapy. I’ve also had vision therapy for double vision and blurry vision. It’s been a year and counting.

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

I can’t control angry outbursts. I have no patience, have panic attacks in the car, cannot tolerate people who don’t understand what I’m going through. I have balance and vision problems. I cannot multitask. I have memory loss (short-term and some long-term). I can’t read more than one chapter in a book, and then I don’t remember what I read. I used to be able to cook for hundreds of people, and now I have trouble cooking for two.

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

I’m not able to do things I used to do – bookkeeping, quilting, reading. I can’t drive a car for more than one hour. I need a GPS to find my way to my destination and back home.

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

Happiness, laughing, and my friends

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

Nothing yet. I’m still trying to find something I like.

13. What do you like least about your TBI?

The way that it has changed my personality. I used to be fun-loving, happy, and

smiling. Now I’m sad and angry all the time.

14. Has anything helped you to accept your TBI?

Not yet. I’m still trying to accept it.

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

Yes. It has brought me closer to my husband. He is my caregiver, and my love for him has grown tremendously. But on the other hand, it has put a distance between me and the rest of the family. They don’t understand me. They get angry with me, and I get very angry with them for not wanting to understand me.

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

Yes. Because of the accident, we have lost our home and had to move to a new state. I have no friends – no one who I can hang out with and do things with. I don’t like to go out in public. I feel very alone. I cannot follow conversations, and I don’t like crowds, loud noises, or lights.

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

My husband. He does a great job. I don’t think I understand how he does it. He is a very strong person and helps me with my memory. He goes to doctor appointments because I don’t remember what was said during those discussions. I have no idea what it takes to be a caregiver to someone like me. I used to be a caregiver for my elderly in-laws, so I know what it takes to be a caregiver – but not for someone as bad as me.

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

To learn more about the loss of the old me and to accept the new me. To have a life again.

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

Sit back. Buckle your seatbelt. It’s a long, bumpy road ahead. It will have highs and lows and good and bad days. Just hang in there. Don’t give up. There’s a reason we were given these injuries. Find your purpose in life.

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

I wish there was more interest and more programs that teach non-TBI survivors what it’s like to be in our heads. I guess I’m trying to say I would like the rest of the world to understand we are still people. We just do things differently.

Pauline before her TBI

Thank you, Pauline, 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.)

 

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.

Brain Injury Resources . . . . . . . . . . . I Forgot To Remember

I Forgot to Remember cvr9781451685817_9781451685817_lg

I Forgot To Remember

by

Su Meck

with Daniel de Visé 

 

Su was a young mom doing what young moms do – she was playing with her child. When she swung him in the air, she never thought his feet would kick the overhead fan. She never knew that it would fall on her head. But, it did, and then she “never knew.”

In her book, “I Forgot to Remember” (2014), Su recounts her story with a lot of help from doctors’ reports, her family, and her friends because, when the fan hit Su’s head, she lost her memory. Read Su’s story to see how, for years, she struggled to put the pieces of her life back together again.

 

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(Clip Art compliments of Bing.)

 

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