TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘brain injury survivor’

SPEAK OUT! . . . . . . . . . . . . . . . . . Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

Itty-Bitty GIant Steps for BlogSPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week. If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at neelyf@aol.com. If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.) I hope we have millions of Itty-Bitty Giant Steps.

Here are this week’s Itty-Bitty GIANT Steps

Anna Bailey (caregiver)…How can I not get excited! I’m not even two days out of nesting (the babying you get before 100% gg60955512thrown to the wolves on you own), and I got a 100 on my QA. I am surpassing department goals. (That has been the case since I’ve been taking calls.) And, I actually exceeded team goals, which are higher than the department goals. I really love my job! Bring on the money!

Anna Bailey (caregiver)…Well, today my husband’s day couldn’t have been made any better. He loves his diesel trucks, and I entered to win some tickets to the diesel nationals and won! They asked about his story because to win we had to say whom we would take and why we should get picked. Truck 12955796331379458534monster truck.svg.hiI mentioned that he is a wounded warrior and that he has wanted to go since he heard about it. They picked us, and they asked if we needed any special accommodations. I told them we do – that our service dog is coming. They then upgraded us to hang out in the suites. 🙂 He needed this, and I was shocked that I won. My husband is amazing. He has done so much for our family, and I am glad I could help make this wish come true.

Runner 9664-illustration-of-a-man-running-pv

Nate Croom (survivor)…I had my TBI in 2008. I had to relearn how to walk, and I still have balance issues. But, this past Sunday, I ran my first marathon (in Lincoln, Nebraska).

Gill Evans (caregiver)…Had a moment today. We were walking our border collie through the park. Holding_handsAlthough it was cold, the sun was shining. Hubby grabbed my hand. No words were said. I felt a feeling I haven’t felt for quite some time – relaxed and happy. Precious times.

Kristina Hopkins (caregiver)…I can’t believe that exactly five years ago, I married the most amazing man. Not only did we exchange vows and rings that day, but he also got on his knees and gave my girls rings and vows as well. Wedding rings anluortrouwI am so honored and proud to have this remarkable man in my life. Tommy, I love you, Sweetie! You truly are my partner in every way. I can’t believe it’s only been five years when it feels like forever. Thank you for marrying me, Tom Hopkins, Jr.!

Jasmine Oldham (survivor)…We had a win today! Ten months post injury and my husband was Couples Counseling ClipArt-AfterTheFire7admitted to an outpatient rehab program in Toronto. They’re going to include couples counseling for us! It also means two months off work for him, so maybe I’ll see snippets of the guy I love, now that he will have less on his plate. For today at least, I’m hopeful and excited.

Bobbi S. Poff (survivor)…I had four strokes within the last four years, and I had fourteen aneurysms and fourteen seizures. I can walk and talk now. I’m proud oDid It congrats-you-did-itf my accomplishments. It’s been a long, hard battle, but I did it!

Lc Sossaman (survivor)…After four years post TBI, I made it to my and my husband’s 10-year anniversary. The last four years have been quite a bit for any regular couple to make it, but we did. The memory of what was and now what is has made the last four years more difficult. Happy Aniversary thI have to pat myself on the back. (LOL) I was a nice person before, and I still am or try to be, but I am hardheaded about things I believe in, and I make it quite clear. I didn’t do it before accident, but I do it now. I am happy with it, just fine. So, learning to be more clear about things is my accomplishment.

Jenn Von Hatten (survivor)… My TBI occurred on Valentine’s Day 2011. My car was T-boned due to freezing rain. I was only going to work for a meeting. I survived to see my oldest children graduate from high school. The father of my youngest child, Hanna, decided he wasn’t happy and kicked me out. For the next 2-3 weeks, I looked for a place to live in our small community, as Hanna goes to school there. During that time, Hanna’s father mentioned 50-60 times that I was brain injured and that my frontal lobe was injured. I wasn’t sure if I, as a TBI survivor, could live on my own and have joint custody of Hanna, who was only five at the time. Yes I Can

My Itty-Bitty Giant Step is: YES, I CAN! With a frontal-lobe injury, which affects my executive functioning, I am able to take care of Hanna, now seven, and myself. When the third anniversary of my car accident was looming, I was bummed out. Stärke-Logo_200pxSo, I got a tattoo – “Stärke.” “Stärke” means “strength” in German. I’ve had to have a lot of inner strength to get this far in my recovery. In addition to sustaining a TBI, I also fractured a rib and vertebrae. When I was discharged from the hospital, I was in a wheelchair. I graduated to a walker, to a big quad cane, and then to a mini quad cane. When I’m in the house, I don’t use anything, unless I’m really tired or sick. I’m a fall risk and disabled. So what if I can’t work as a nurse – I’m alive! I watched my oldest children, Emma and Liam, graduate, AND I have joint custody of Hanna. An Itty-Bitty Giant Step, I HAVE TAKEN!

YOU Did It!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

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“Another Fork in the Road” . . . Brain Injury Radio Network . . . Interview: Lisabeth Mackall

You Are Invited

Lisabeth Mackall: Caregiver, Therapist, Author

putthis_on_calendar_clip_art

When Lisabeth Mackall opened her front door at 2:30am on January 2, 2012, it changed her life forever. She learned that her husband, Police Officer Frank Mackall, had been in a serious motor vehicle accident while on duty, and had been airlifted to a hospital. When Lisabeth opened her front door, she unknowingly entered the world of brain injury. She had to follow “Another Fork in the Road.” Lisabeth will share how she and her family picked up the remnants, pieced them together with patience, persistence, and love, and forged a new life.

Come One! Come ALL! 

What:        Interview with Lisabeth Mackall, caregiver to spouse, Frank Mackall

Why:        Lisabeth will take us on a harrowing journey of how her husband got a brain injury and how her family is coping with this new “normal.”Mackall, Lisabeth with Book

Where:     Brain Injury Radio Network

When:       Sunday, May  3rd, 2015

Time:         5:00p PT (6:00p MT, 7:00p CT, and 8:00p ET) 90 minute show

How:         Click: Brain Injury Radio Network

Call In:    424-243-9540

Call In:     855-473-3711 toll free in USA

Call In:    202-559-7907 free outside USA

or SKYPE

If you miss the show, but would like to still hear the interview, you can access the archive on On Demand listening. The archived show will be available after the show both on the Brain Injury Radio Network site and on my blog in “On the Air.”

(Clip Art compliments of Bing.)

(Photo compliments of Lisabeth Mackall.)

Survivors SPEAK OUT! Kristin Russo

Survivors  SPEAK OUT!  Kristin Russo

by

Donna O’Donnell Figurski

Russo, Kristin December 2014 After

Kristin Russo – Post-TBI Dec. 2014

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

Kristin Russo

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

Annandale, Virginia, USA

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

July 22, 2013 – I was 28.

4. How did your TBI occur?

My TBI was caused by a collision with a tractor-trailer. Read about it. “Kristin Russo accident.”

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

It was realized about 2-3 days into my stay in the ICU (Intensive Care Unit).

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

I have no memory of the accident, the month in the hospital, and even the first 5-6 months at home under 24-hour care.

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

Yes. My coma was induced.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I had occupational, physical, speech, and recreational therapies for a month as an inpatient. I had therapy as an outpatient until May 2014 when all but physical therapy ended. I’m still in physical therapy for physical injuries.

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

I have moderate to severe diminished visual memory, mild to moderate decreased attention span, diminished executive function, and mildly diminished speech and language function. Those are the significant findings as per my neurological addendum. It was also noted that I am likely to have significant permanent neurocognitive dysfunction due to the TBI. This problem with the physical brain injury is further complicated due the fact that I have significant PTSD (post-traumatic stress disorder). I have a college degree, yet I had to learn how to do things as simple as double-digit subtraction. My entire education has been wiped away. Since I graduated with honors, it was easy to get accepted to Liberty University. But, I can’t retain information anymore, so I’m not sure if I’m going to go back to try and learn everything all over again. My neurologist has diagnosed me with ADD (attention deficit disorder) due to the TBI. I’m not allowed to use anything hot without supervision, etc.

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

Some things are better because I now have an excuse for being directionally challenged or for when I mess up (haha). 😉 Things are worse because I am dependent and I HATE IT! (I am an independent girl.) I was such an intelligent woman. I was still paying off my degree when the accident happened. Not being able to use ANY of the knowledge really made me unhappy. Not being able to work has been horrible because that is all I have ever known. I have been working since the day I turned 14. (My first day of work was on my 14th birthday). I worked at the same place until I graduated high school and went to college. I hate that I can no longer drive. I miss being able to do what I want to do when I want to do it. 😦 I live about eighty miles from where I grew up, so it’s not often that someone comes to visit me. The accident caused me to lose my family because my own father was stealing my pain pills for his sick addiction. I’ve lost some of my friends because I’m a totally different person personality-wise. I’m 100% honest, and I have dedicated my life to Jesus Christ. The girl in the accident died. She wasn’t the best wife. (I’d give more details, but those things are better kept between husband and wife. 😉 ) But, that’s why my accident happened, and I know it. God was showing me what was in front of me, and the same, for my husband. God was bringing us closer together, and that’s exactly what my accident did. So, that’s what I do like about the TBI. Another thing that I like about the TBI is that I don’t remember the accident or being in the hospital or even the 5-6 months after it. I also don’t remember my surgeries up to July. I remember the ones on Black Friday and December 1st. But, yeah, the girl I was before was a girl who drank a lot and went to clubs and acted like she was a single 21-year-old female. Since I’m not her anymore, I’ve lost a couple friends who were just like that girl. I don’t need those girls anyway!

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

I miss being able to drink alcohol sometimes – at least to drink socially. I miss being able to drive. I miss being able to do what I want when I want. I miss working. What I do now is to constantly go to appointments – it’s nuts! I am still in physical therapy – several months post accident. I just got yet another MRI scan (magnetic resonance imaging). I had surgery number eight on January 27th. I began speech therapy in January since insurance started paying again. I miss sleeping like a normal person. I miss being skinny. (I was a size 2 when I was married on July 7th, 2011, and I’m not that size anymore.) I hate being on so many damn medications. I loathe people’s not understanding invisible disabilities. I also have CRPS (complex regional pain syndrome) that was caused by the accident. It’s a chronic pain disease that has no cure.

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

I enjoy the fact that the Trauma Survivors Network Next Steps program taught me to find the positive in everything, so I do. When my legs hurt, I remind myself that I shouldn’t have any, so I thank God for letting me keep my legs! When I have my chronic headaches, I thank God for not making the swelling be so bad that I need to have surgery!

13. What do you like least about your TBI?

I don’t like that I sleep every other day sometimes. I dislike the chronic headaches and the fact that a headache is invisible. I don’t like having memory issues and being confused so often.

14. Has anything helped you to accept your TBI?

God

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

My husband gets rather upset when I forget that I’m not supposed to use a curling iron, and I fail to remember to turn it off. I no longer speak to my parents – my father makes fun of my TBI and acts like I’m making it up. (A*^#@~! ! I guess that’s what drugs do to ya.)

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

I don’t really have a social life anymore. Things are so much louder now. People annoy me more. 😦 I have NO filter. I just want to be home with my husband or alone with my dogs. I haven’t watched TV since the accident.

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

My husband is my main caregiver.

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

I’ll be running a photography business. 🙂 And, I better be a mommy to more than just my fur babies!

Russo, Kristin Before Accident

Kristin Russo Pre-TBI

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 urge people to try to make a positive out of everything. Depression is so ugly. I wish that I never hit that stage. Having a positive attitude has helped me SOOO much.

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

I give back now by volunteering at the hospital where I did my outpatient therapy. I got one of my dogs certified as a therapy dog, and we visit patients. I also visit patients in the trauma unit. My visits help others, and they also help me!

 

Thank you, Kristin, 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.

(Photos compliments of Kristin.)

As I say after each post:

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

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SPEAK OUT! . . . . . . . . . . . . . . . . . Itty-Bitty GIANT Steps

11136933_10155590257065643_153293147_nLisa Marie Cohen (survivor)…I hiked a mountain! It was Mount Beacon on the Hudson River.

Bonita Gibb (caregiver)…I was reflecting on how I came to be the person I am today. One of the moments in my life canstock5980362that showed me my true colors was sitting in the ICU (intensive care unit) and praying for a miracle. It was during that dark time that I realized just how strong I am. While I would do anything to give my husband, Brian, back his independence, I also am thankful for that moment and all it had to teach me.

Sarah Klingler (survivor)Graduate broomfield-orthodontics-graduation-cartoonI learned that I can do anything as long as I put my mind to it. I got my TBI when I was eight. I started having seizures the next week, and they haven’t stopped. As a result, I’ve never driven. But, I graduated from high school with honors, and I am two semesters from getting my Bachelor’s Degree in elementary education.

Pamela Miceli (caregiver)Welcome HomeMy son came home for good last week after fifteen months of rehab! Can we say that this is a Great Big Giant Step?

Tina Thorne (caregiver)…My son, Jordan, is a two-time brain-cancer survivor and has had an ABI (acquired brain injury) since the age of twelve. He is eighteen now. He received a very nice message from a lady representing the Brain Tumour Foundation of London, Ontario, Canada. The foundation wanted Jordan to attend a special dinner for an event on the foundation’s behalf. docs-on-ice-generic“Docs on Ice” is an annual event that travels from community to community. Nine hundred doctors from across Ontario come to a city and raise money for an individual charity every year. This year the city is London and the charity is the Brain Tumour Foundation. Darryl Sittler, a retired National Hockey League player who was elected to the Hall of Fame and who played for the Toronto Maple Leafs, was the guest speaker. Jordan was an ideal choice. He is a brain-injury survivor and a hockey buff. He thanked Darryl Sittler for helping to raise funds for the Brain Tumour Foundation and for raising awareness of brain injury. Jordan also met Master of Ceremonies Joe Bowen, “The Voice of the Leafs.” The mayor of London was also in attendance. I am super proud of Jordan!

Kimberly June West (survivor)…I am a consultant for a therapeutic oils company! YAY! These oils are awesome. I was getting sad from all my pain. EssentialOilsThey have given me a love for life and a passion for living. These are products that people love – bath infusions for pain, migraines, eczema, difficulty sleeping, etc. The awesome thing is that I made the leadership team and VIP consultant two months in a row!

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

TBI Tales . . . Tracking Miles in Electric Blue and Shiny Mango

Tracking Miles in Electric Blue and Shiny Mango

by

Donna O’Donnell Figurski

Cat TrikeCatherine (Cat) Brubaker (TBI survivor) got a black Catrike 700. Dan Zimmerman (StrokeZimmerman, Dan survivor) got a black Catrike 700. They pedaled across America diagonally, 5,300 miles, and it changed each of their lives.

David Figurski (TBI survivor) got a trike, an electric blue Catrike 700, the same model as Cat and Dan’s, but a different color.040915 David 1st Ride Catrike 700

Donna O’Donnell Figurski (copycat) got a trike, too. Though to show her independence, she didn’t get a Catrike 700. She went for the Donna's Pocket 040915Shiny Mango Pocket Trike. It’s cute!

DonnaNow David and Donna want to match Cat and Dan’s GOAL! We want to trike 5,300 miles in the desert. I wonder how long it will take us.

LET’S GO!

NAME          DATE                     Total MILES since 4/9/15

David           1/24/16                    1,570

NAME          DATE                    Total MILES since 4/9/15

Donna          1/24/16                 79

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.anim0014-1_e0-1

Please follow my blog. Click on “Follow” on the top right sidebar. (It’s nice to know there are readers out there.)

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

If you don’t like my blog, “Share” it (intact) with your enemies. I don’t care!

Feel free to “Like” my post.

(Clip Art compliments of Bing.)

(Photos compliments of Me.)

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! . . . . . William

SPEAK OUT! – William

by

Donna O’Donnell Figurski

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

William

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

Eastern Tennessee, USA

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

Age 43

4. How did your ABI occur?

I was subjected to 334 ppm (parts per million) of carbon monoxide for six days.

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

At 6:00 am on the seventh day, I was found unconscious outside my apartment door.

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

A hyperbaric chamber was used on three occasions while I was in a coma.

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

I was in a coma 32 days.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I had physical and speech therapies for two years – first, inpatient; then outpatient.

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

Pre-injury, I was a retired Marine Colonel on discharge leave. After my injury, I developed a pronounced hyperkinetic motion disorder, with severe spasticity, a short-term memory disorder, and slow-awakening problems. I cannot walk, type, write, or do anything requiring either fine-motor control or large muscle use.

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

I went from an active Marine to an inactive thinker. From one perspective, my life got significantly worse – about the worst it could. In another perspective, it became rather better. I have a better logical process; I am more understanding of others; and I have the dubious privilege to be unable to use any pharmaceutical drug. To combat this odd aspect of my disability, I studied to be an herbalist, and I live quite well. I cannot have many food chemicals, so I eat better too.

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

I miss being a Marine Corps Colonel.

What do you enjoy most in your post-ABI life?

12. I enjoy knowing how to help people who cannot yet cope with their disability. I help anyone who asks.

13. What do you like least about your ABI?

My brain injury turned me into a burden on everyone in my circle. I can do very little. Whenever I try to use my muscles, hyperkinesia starts up, followed by severe spasticity. It makes doing most things impossible.

14. Has anything helped you to accept your ABI?

I eventually realized that this was what I had left in my life. I could either mope about lost opportunity, or I could grasp any opportunity that came my way. I chose the latter – I cannot change anything, so I willingly accept it.

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

My life has been affected in every conceivable way. Everything is different. Relationships are far harder – people do not wish to know the twitching cripple in the fancy wheelchair. Physical relationships are completely different – I cannot be an active partner, so I must be passive. It takes a special person to be able to cope with that.

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

Able-bodied people do not like to see severely disabled people. It embarrasses them. This makes socializing rather difficult. People will say “Call me” and give me the wrong number. Or, they will shudder at the thought of seeing me again. In stores, I am apparently invisible.

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

Caregivers come and go. Some are good; some are perverts; some are thieves. They are necessary, so I lose things, get humiliated, or get assaulted. I have a friend who takes time to look after me once or twice a month. My friend works away and is home infrequently.

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

It would be nice to still be breathing. I have lived as I do now for twenty years. I hope to live for longer.

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 ABI survivors with your specific kind of ABI.

Accept it as it develops. It takes time to reach the level you will live at. Accept that, and it will be easier.

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

It is easy to be angry at the condition you find yourself in. You were not supposed to get disabled in any way, and you probably think that it is horrifically unfair. That is completely true in every case, but it does not help you go on with living. To do that, you have to look at what you have been given, what you still have, and what you can do. Take that inventory slowly and carefully because it is important. When you know what you have to work with and what you can do, don’t try getting anything else. Just accept what you have and adapt to live at that level. When you have done that and you can live calmly at that level, you could try to do more, but not until you are calm with your disability. So many people spend all of their time trying to fight the un-fightable. They are constantly miserable because it does not seem fair. I know it isn’t. I lost nearly everything three months after I retired from the Marines. All my dreams, hopes, and expectations died along with some of my brain. I really do not need to make worse what I have left by being miserable about it. That is foolish. I have to go on living. I had, and still have, no alternative, so I must make the very best of what I have. You will enjoy a better standard of living if you do the same.

 

Thank you, William, 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.

(Clip Art compliments of Bing.)

Brain Injury Resources “You Disappear”

“You Disappear” by Christian Jungersen

(Insight Into the World of Brain Damage)

reviewed by

Donna O’Donnell Figurski

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You Disappear by Christian Jungersen

As anyone who has had a brain injury and his or her caregiver know, life is forever altered. It will never be the same. Christian Jungersen takes his readers on the twisted journey of Frederick, a headmaster at a prestigious school; Mia, his wife and a reputable schoolteacher; and their teenage son, Niklas. Unlike many brain injuries that occur by an impact, an accident, or a hemorrhage, Frederick’s brain “injury” evolved over time, changing his personality bit by bit. Mia slowly noticed inexplicable changes in her husband. Talking too loud and eating too much were just two of the little signs that were manifested as Frederick’s brain changed. While on a vacation in Majorca, Frederick drove unusually erratically and dangerously. His driving caused their rental car to scrape a stone cliff. When Frederick, in a crazed state, jumped from the car, fell down a hillside, and woke in the local hospital, he was forced to seek help, and the mystery of his strange behavior is unveiled.

Once Frederick is diagnosed with a slow-growing brain tumor, his aberrant behavior becomes more understandable, but not excusable. As is the case for many brain-injured persons, Frederick’s behavior hampered his decision–making process. Frederick illegally took large sums of money from his school, causing the school to become bankrupt and Frederick to lose the respect and friendship of many people, including his chairman and close friend, Laust. Eventually Frederick, while seeking help, loses his job and faces a possible prison sentence.

Mia fondly remembers the years before the change in Frederick. She remembers the love they shared. She does what she can to help him, but his deviant and erratic behavior makes living with him difficult. Finally, Mia seeks help and companionship with a local brain-injury support group, where she meets Bernard, who not only becomes Frederick’s attorney, but also a “special” friend to Mia.

As Christian Jungersen so aptly states, “As any family member of someone with brain damage knows, the hard part isn’t the initial shock. The hard part comes when the adrenalin recedes and you have to set out down the endless gray corridor of disheartening days, days that look like they’ll last the rest of your life.”

As the caregiver for my husband, who has a traumatic brain injury, I understand Jungersen’s words completely. The adrenalin gets you through the early surgeries and the beginning days in the hospital. It may even carry you through the weeks in the rehabilitation facility. But the adrenalin-rush ends, and “real life” sets in when the caregiver brings the survivor home. That’s when the realization occurs that life will never be the same as it was. The survivor will never be the same as before, and neither will the caregiver. Brain damage has a way of changing the normal. That’s when the survivor and caregiver realize that the journey through the brain-damage maze has just started. They eventually realize that it has no end. Once brain damage comes to stay, it can tear families apart. But, it can also make families stronger, as they pull together to overcome the trials of brain injury.

In “You Disappear,” Jungersen portrays how one family finds their world breaking up. Will they find enough glue to repair it?

 

Jungersen 2

Christian Jungersen

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(Clip Art compliments of Bing.)

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