The Brain Injury Association encourages people to share their stories with others. This blog page was developed to offer people a means of sharing their stories with others. The notion that each brain injury is different is still as true today as it was 20 years ago. However, there are lessons we can learn from the experiences of others. Hearing the stories of others can educate, inform and inspire. We post the stories without editing. The stories are yours. We reserve the right to not post stories with profanity.
That is why we developed the Personal Stories page of the Brain Injury Association website. We wanted a place where people can share their stories, and where people can comment on stories as well. We do have a few simple ground rules:
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If you wish to share your story but are having trouble getting it started, there is a guide developed by a group of people with brain injury. It is meant as a way to help you think about what is important to share in your story. You can download the guide here.
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Personal Story by Pattie Welek Hall
When my nineteen-year-old son was admitted to the Medical University of South Carolina, tagged as ‘John Doe’ and given only twenty-four hours to live after he suffered a traumatic brain injury, I refused to accept his death sentence. I called on God and His angels, seeking healing and understanding. But at times, even that wasn’t enough. When Casey’s ICPs skyrocketed, when his fever reached 104 degrees, when he was put into a coma—twice—I was at wit’s end. And even though the nurses and doctors were very supportive, it wasn’t enough as I rode the roller-coaster into the unknown. Was my boy going to recover? Would he be able to talk, walk or even eat on his own again? How was I, how was the family going to cope after our life had been turned inside out?
Oh, how I longed to talk to someone who had experienced this heart-wrenching pain. Someone who could tell me that Casey’s daily, sometimes hourly, lows and highs were normal. Mere statistics weren’t enough. I needed to connect with personal stories from people who had walked in my shoes. But there were none.
It took years of healing before I could pen the first word of my memoir, the pain so deep. But some force outside of me kept whispering, “You need to tell your story to help others on their journey.” So I did. And my journey into healing began.
I hope that my story A Mother’s Dance—a story about hope, perseverance, self-discovery, hard choices, and most importantly about love, the sad and the wondrous—will inspire others to brave the unthinkable storm.
As I neared the one-year mark since my accident, I had thought a lot about writing a blog post on it. Actually, the entire past year I have thought a lot about it. But I didn't. I didn't have the courage. I've been scared. Scared of what people might think. Scared that people will be snarky or rude. Scared of what I might feel. Scared of reliving the fall. Scared that no one will read it. Then I heard a voice in my head say "Screw it! Writing is your therapy, Amy. It's time to write it down and get it out of your head!" If my story can inspire even just one person, it is so worth getting past my fear, so here goes!!
It's been almost one year since that cold February day that I slipped on a patch of sheer ice in my building's driveway and landed smack on my head. I can still feel my feet slipping out from under me, knowing there was absolutely nothing I could do as both feet went straight up in the air (I imagine I looked a bit like a cartoon). I can still hear the terrible, gawd awful sound of my skull making impact with the concrete. I can still remember thinking to myself "Oh, no. This is really bad." I can still remember sitting up and finding Pixxie about seven feet away from me, tail tucked under, looking at me like "What the heck just happened, mom?" I remember the excruciating pain on the back my head, and the swirling, flickering lights in my peripheral vision.
We (me and my team of doctors) are pretty certain that I blacked out for at least a short period of time. I had been holding Pixxie (my 8-pound Yorkie) in my left arm at the time of the fall. Given she was about seven feet away when I sat up, there was at least a short period of time in which she got up and walked away from me. Who knows, she could have sat there and licked my face for five minutes first. There was no one around at the time, and security cameras don't capture that part of our parking lot. I will never know for sure if I laid there limp and helpless for seconds or minutes.
We think that my body reacted instinctively and protected Pixxie like a baby, hence why my arms didn't go down to break the fall. The full impact of my fall was taken by my skull. Let me say that again: The full impact of my fall was taken by my skull. The resulting injuries as diagnosed by my chiropractor and neurologist included: a severe concussion, mild traumatic brain injury (TBI), torn/pulled muscles in my neck, throat, abdomen, and chest and a dislocated sternum. I hurt in places I didn't even know it was possible to hurt.
In the days to follow, I think if heard one more person say "It's just a concussion," I may have punched them in their throat. Concussions often lead to TBIs and are quite serious. According to the CDC (Centers for Disease Control and Prevention), there are approximately 1.5 million people in the U.S. who suffer from a traumatic brain injury each year. 50,000 people die from TBI each year and 85,000 people suffer long-term disabilities. In the U.S., more than 5.3 million people live with disabilities caused by TBI I mean, people DIE from falls like the one I took, somehow I came away with my life. For that, I am forever grateful.
It is one year later and I am still struggling with the effects of my TBI, as well as all of my physical injuries. I have felt an entire spectrum of emotions: anger, rage, fear, sadness, depression, hope, joy, frustration, contentment. I struggle with crowded restaurants or shopping malls. I can't handle over stimulation from multiple sources (light, sound, vibration). I get confused easily. I forget things in seconds, but can remember them days later. I suffer from constant vertigo and dizziness. I am up and down emotionally like a roller coaster. I am exhausted beyond comprehension. I grab for words that seem to have disappeared into thin air. My personality has changed, and I am aware of my mood swings. I have anxiety and panic attacks -- which scared the crap out of me when they first happened. I have some really good days. And I have some really bad days. When I wake up in the morning, I say a little prayer that it's going to be a good day, because sometimes the bad days are just more than I can handle.
People make assumptions that I must be fine because I have an "invisible injury" and they see me constantly working my butt off. What they don't see is the pain and exhaustion at the end of the day. The consecutive days spent in bed because I physically don't have the strength and energy to do anything. The ice packs and ibuprofen. The hot baths with epsom salts. The rescheduled sessions and missed hours of work. The massages. The physical therapy. The PTSD therapy sessions. The 70-some doctor visits. The uncertainty of whether i'll be able to continue as a photographer, which is a much more physically and mentally challenging career than most people realize. But I have no choice other than to power through it and keep on working. As a single woman who is self employed and living on her own, the financial struggle has been very real, and frightening at times. What little I had saved away was eaten up after my divorce a few years ago. I am not complaining. It's all been working out just fine. I just want people to really understand the struggle: physically, emotionally, mentally and financially.
When I wasn't able to get out of the bathtub one night shortly after I fell, I realized that I needed some help and support. I decided to go stay with my parents for a few weeks. While my parents aren't the best caregivers in the world, it was comforting to be around someone and know that they were there in case I needed help. Being alone in my loft gave me an overpowering sense of loneliness that I needed to escape. I am quite independent and tend to overdo things, and this has been a great lesson in patience and asking for help.
Now, I am not telling you all of this to make you feel pity for me. Far from it. I want each and every one of you to understand that invisible illness are very real. Chances are you will run into someone with a TBI on your next trip to the store (5.3 million Americans are living today with a TBI-related disability). Next time the person in front of you at the grocery store is having a hard time counting out their money, or they are walking a little too slowly in front of you, or they can't remember what they were saying to you mid-sentence, or they are staring blankly at the shelves with their cart in the middle of the aisle, please, have some grace. We can't help it. It is who we are now. Every day the journey gets easier, but there's a very real chance that it will never go away completely. Every single day someone takes their life because they can't cope with the chronic struggles of a TBI. I do not want to be one of those people.
Please! Don't ever say to someone "It's just a concussion. You'll be fine." That is not what we want to hear, and it's simply not the truth. Instead, ask them if they need anything. Offer to bring them a meal (I couldn't figure out how to use my microwave, let alone my oven, for a few days after my accident) or run some errands for them (I had no idea how to use the ATM at the bank).
Offer them your ear and/or shoulder (I thought Bill Clinton was our president). Show them that you care (it's a very dark and lonely place). While you can never understand what it's like to live with a TBI, you can show compassion and empathy. Instead of asking "How are you feeling?" ask "What can I do for you?" Also, don't make fun of the situation. I remember on several occasions people saying things like "Well you shouldn't be wearing stilettos out in the ice" or "Sounds like you need to wear a helmet in your parking lot" or "Were you attempting Crashed Ice?" These attempts at humor are not at all funny in the days after a traumatic accident. Not to mention that brain injuries cause you to cry at every little thing. (I still cry when I see a stupid cat video on YouTube). (BTW, I was wearing winter boots when I fell. Not stilettos. I wanted to clarify that for the reader!)
I am eternally grateful for a friend that offered to spend the night at my house the day I first fell. I was terrified of going to sleep that night, and it was comforting to know that he was just downstairs if I needed him. I am grateful for the friend that brought me fruit and made me chili. I am grateful for the friends that called to show they cared and asked if I needed anything. I am grateful for the Doctor with a positive attitude who continually reassured me that I would get through this. I am grateful for assistants who jumped in to help me when I needed it. I am independent and stubborn, so it was very hard for me to sit back and accept all of this support. But without it, I truly may not be sitting here today.
Situations like these can cause some friendships to end, and new friendships to form. I am thankful for the amazing people who have come into my life since my accident. The universe has given me more than I thought I was capable of handling, only to prove to me that I am a lot stronger than I ever thought. I have learned to slow down, honor my body, give myself grace, and know that everything really will be okay. I know that everything happens for a reason, and there is a reason the universe wanted me to experience this. I am grateful for the lessons I am learning from this, and the ones that I have yet to figure out. One day at a time, one foot in front of the other. When the going gets tough, really tough, you gotta keep on going!
Name: Kenny Vormbrock
Age at time of injury: 35
Date of Injury: June 10, 2010
My brain injury was Traumatic
My brain injury was Severe
Life before brain injury
I was working part time at Wendy’s in customer service
I went to YMCA 4-5 times a week to work out, and I was eating healthy
I was living on own in an apartment
I was visually impaired before the injury because I was born with Coloboma of the iris; I was very nearsighted
I used public transportation because my visual impairment kept me from driving
How I sustained my brain injury
On June 10, 2010 around 2:00pm to 3:00pm I was leaving work and walking across the parking lot toward the bus stop to catch the bus to go to the gym. While walking across the parking lot, a lady in a Chevy Silverado struck me on the right side of my body and I landed on my head and was knocked unconscious. I was rushed to University of Louisville Hospital . While there, I had two surgeries, one on my brain and one on my right leg. I woke up a couple of days later, and all of my sight was gone, I felt a bandage on my head, and I had a feeding tube. I also suffered mild hearing loss in my left ear. My mom was the first person I heard, and she explained the accident to me. I could not talk because I was in shock. I was very confused
My Recovery Path:
While in the hospital, I transferred to Frazier Rehab inpatientI received PT, OT, Counseling, and Speech Therapy for the month that I was there
In PT: I concentrated on exercising and strengthening my right leg that was struck by the truck. I was using a wheelchair and graduated to a walker before I left Frazier inpatient
In OT: I concentrated on Activities of Daily living such as dressing, grooming and toileting. I still use a trick my OT taught me today since losing my sight: I squirt toothpaste into my mouth then brush my teeth to avoid missing the toothbrush
In Speech therapy: I concentrated on short term memory skills and feeling objects to memorize their feeling and identify them
In counseling: we focused on my mood and family education dealing with my feelings about my injury
My family came to visit me daily. I drank most of my meals as a shake through a straw because of an abscess tooth. After one month, I discharged from Frazier Inpatient and moved in with my parents. Because my injury happened at work, Workman’s Comp. covered my therapies and services. They even built a wheelchair ramp at my parents’ house.
I started outpatient therapies (PT, OT, counseling, and Speech) at Frazier NeuroRehab Program twice per week for about two months. I graduated to a cane. I left Frazier to do aqua therapy in a saltwater pool to further strengthen my left leg, which I really enjoyed for 1-2 months. I then completed more physical therapy at Baptist East Milestones program. Workman’s comp. even paid for an elliptical for me to use at home.
9/2011 Guide Dog: While at Frazier outpatient, I met a woman who had a guide dog. After I completed physical therapy at Milestones, I decided to pursue getting a guide dog. I called Guiding Eyes in New York and had a phone interview. Looking back, it was way too early in my recovery to go to New York for this. But at the time, I wanted to go, so I went. This was in September 2011. While in New York, I spent one week meeting everyone and training with my dog. After one week, I was asked to leave because they did not feel I was progressing because of my brain injury deficits (memory, sleep deficits, etc.). I was very disappointed, so I spent a few days at my sister’s house so she could lift my spirits.
10/2011 McDowell Center: Training school for the blind and visually impaired
Lived in dorm for 3 months and received training for orientation and mobility, home and finance management, typing, and Braille
1/2012 Moved into my own patio home to live independently- my brother helped me find it because he’s a real-estate agent
4/2012 Leg surgery to remove steel plate because it was really bothering me
6/2012 graduated from McDowell Center: had mastered grade 1 Braille, and my home and finance management instructor had worked with me in my home
Vocational Rehab- worked part time in a warehouse for a few months. I didn’t feel like I was being treated as an adult, so I left.
1/2013 I began a program called NeuroRestorative for adults with acquired brain injuries. I began receiving OT, Speech, and Counseling therapies.
I am still a part of this program.
OT: Working on getting a part-time job, budgeting, cooking, cleaning, exercise
Speech: Grade 2 Braille, memory, social skills, auditory comprehension
Counseling: Brain Injury Support Group, exercise as a coping mechanism
What challenges do you face on a consistent basis as a result of your brain injury?
Becoming frustrated easily
Lost what little vision I did have- adapting to not having sight
Asking for help when I want to be independent
Describe any significant road blocks you may have experienced in your recovery
Not being able to obtain a guide dog
Graduating from McDowell Center before learning grade 2 Braille
Second leg surgery that took me out of my orientation and mobility class
Learning how to cook again
What therapy, treatment or strategy did you find most helpful?
Deep breathing to reduce frustration
Getting an iPhone and learning how to operate it with voiceover. I use it for my calendar, phone, email, and entertainment
What was it like finding support after being released from the hospital or physician? What role has support played in your recovery?
I had great support from my family. If it weren’t for them, I don’t know where I’d be. They used tough love to help me recover
Now I attend Headliners support group for adults with brain injury. I appreciate the intimacy and smallness of the group and it’s nice to hear that I’m not alone. I also appreciate the confidentiality
At what moment did you realize you had changed forever? Was there a situation or event that stands out as a pivotal moment that heightened your brain injury awareness?
The day I woke up from my coma. I realized that I was blind and that my life had changed forever.
What are the main strategies you use to surmount challenges to live life as a brain injury survivor today?
Going to support groups, taking time out to meditate and breathe deeply to reduce frustration. I also pray a lot.
What are your next steps on your path towards your new normal?
Find and obtain a job, finish learning grade 2 Braille well enough to read a braille menu.
Please list 10 things that you found helpful in your recovery journey.
2. Support Group
3. Deep breathing
5. My iPhone
6. Toothpaste Trick
7. Braille for labeling things in my home
9. Eating healthy
Nov 3 I am still here and still fighting. My Court date is Nov 12th I am still tying up loose ends so I can be ready for that date. Housing management refused to give me a written letter stating on Nov 13th assessment and possible repairs of the apartment will take place. That’s the day after I see the judge, and yet Housing Management has sent letters of threat in the past to me. There is a paradox. A friend last night made a plausible statement “How can housing management have you go to a third level grievance at the same time you are going to housing court to see a judge?”
My friend stated “How does that work?” “Speak to the legal aid lawyer because that is a conflict of interest”. My friends final statement is it cannot be both at the same time – a third level grievance and a housing court hearing. Also, bad news: Yesterday (Nov 2nd) Social Security denied me for a third time. The reason is although Social Security acknowledged I have a traumatic brain injury, my medical evidence does not demonstrate that I am not able to work. They said because of my education and age I could perform some light work so I am denied benefits. This is erroneous, ridiculous, a travesty of justice. It’s just not fair. I am afraid what is going to happen to me without that money. I don’t know what the future holds. Thank you very much.
Update October 2105: The management wants me out of the apartment. They want to send me to a shelter. I would not last at a shelter. I have been sick and I am down to 119 pounds. I don't have any other housing options at this time.
Update September 2015 First I would like to thank the Brain Injury Association of America for their efforts in getting my story out about what happened to my mother July 30, 2015. My mother died quietly in her sleep that Thursday morning. Although it was her other serious health issues and considerable loss of weight was attributed to long years of exposure to mold and other hazardous irritants. Housing management admitted reluctantly that there was a prevailing mold problem within this complex. Unfortunately, the problem for my mother was not addressed properly either through remediation or a change of apartments. If that was done, she might still be alive.
My mother had to move from the 4th floor apartment back in 1998 to 1999 because of renovations to the 4th floor and the roof of the apartment. My mother weighed, when healthy, 160 pounds. She was placed in one apartment that was filled with mold, asbestos, iron and “rodent fever”. She did not know this at the time. It became apparent a couple of years later. She lost 40 pounds.
She went to the legal aid lawyer and told him the problem. He called the Dept of Health to do testing. That’s how we found out about the high levels of mold and asbestos and iron in the apartment. It was recommended for her to move to another apartment.
Between 2001 and 2002 my mother was told she could return to her top floor apartment. But she said she was too weak to climb 4 flights of stairs again. Her legal aid lawyer tried to find, with the help of housing management another apartment with fewer steps. Thus, the current apartment she moved to was one with fewer steps. However, it was not renovated.
A few years later she started to lose weight again, starting in 2005. Headquarter for housing management stated the apartment that she lived and died in was renovated.
From then on, she steadily continued to lose weight from her 120 pounds until she had to have emergency surgery in 2010. It stopped some of her problems, but she never really gained back the weight she should have. Unfortunately, she had to return to the apartment which created the issue in the first place. And then, besides the sink which broke and overflowed with raw sewage in 2012, we (my mother and I) did not have anywhere to prepare our food. We had to eat prepared foods until the day she died. Housing management never really addressed that problem.
Then in 2014, my mother’s demeanor changed. I wondered why it was like that. Her behaviors, her balance and memory issues were similar to a person with a TBI. I asked questions of doctors and did research. I found out to my surprise that long term exposure to molds can cause memory and other related issues which are similar to a person who sustained a brain injury. It’s still a new phenomenon, and research is being done, because the etiology is still questionable.
A couple of weeks before my mother died I spoke with doctors that I visit to treat my TBI. I set up appointments for her to see a neuropsychologist and vestibular rehabilitation as well as blood tests to see if she had mold toxins or oxytoxins were present in her blood. Unfortunately she died before all of this was completed. Now, I am left with constant harassment and guilt on Housing Management’s part, not being given time to grieve over my mother’s death. However I am not easily intimidated and I will press on to fight for justice for her.
I am not the only one whose parent has died under these similar conditions. Within this same housing complex these same people have the threat of eviction too because of it. Overall, all this makes me think about Einstein’s theory of relativity. I wish to explain that. I wish to tie relativity with “pure irony” of my mother’s sudden death. Einstein stated eloquently that for every action there is an extreme and real reaction. In other words, it can be towards a positive realm or it can be toward a negative realm. The rippling effect created by Ella Mae’s death is relative because there are so many who face the same tragedy across the United States. The system has it’s inertia which effectively doesn’t move in resolving these cases immediately. The very action of Ella’s departure has an equal and decisive effect not only towards those who suffered the same but also to the landlords and management in these cases. Therefore, a measure of empathy with a conscious effort towards prevention may alleviate some of this tragedy in the future as well as local politicians, religious leaders and the government need to be more proactive because this problem will continue. I hope to obtain justice for my mother because I have to believe she did not die in vain. Thank you very much and say a prayer for me and I will keep you updated.
Update August 2015: I am very sad to say that my mom has passed away in her sleep. We have been battling with the management company of our housing unit. The unit my mom and I lived in was unsafe. The company has refused to address any of the concerns we had. I hope after my mom's funeral I will be able to address this issue in more depth. People should have access to safe, sanitary housing conditions. Please say a prayer for me.
First, an appeal, posted May 2015:
I did not appreciate and understand the contract I was forced to sign, relinquishing my right to reopen my workers compensation case in the future. At the time, I was told by my attorneys I had to sign I had no choice, it’s the law. I discovered several years later that my brain injury was not only irrelevant, but medical evidence supporting the fact I have a brain injury was conveniently excluded, withheld so workers compensation would accept the contract without question. I did not discover this until years later. Once I told workers compensation, they responded that my attorneys only gave them neck and back injury medical evidence. The attorney offered nothing about the brain injury period, yet they did nothing and took no legal measures. Further, workers compensation went against its own rule that if a person has any brain abnormalities or injury, they need a medical clearance before workers compensation would accept a permanent contract. Workers compensation refuses now to hear my testimony and they rejected reviewing my brain injury medical evidence. Therefore, I am making a public plea for an attorney, experienced in appeals going to the supreme court, an appellate attorney experienced in reopening difficult worker’s compensation cases. The clock is ticking for me, please respond and I would greatly appreciate it. Justice won for me will help others suffering the same experience.
Ms. Edwards has written several pieces published in the Brain Injury Association of New York newsletter. Name: Miss. Raini Edwards
(my heritage is: Cherokee, Blackfoot Indian and Black American) What was the date of your injury? January 21 2001. It happened at 6:45 am on a Sunday. Education: Currently as of 2012 I am still a licensed practical nurse in NY state. I have been a licensed LPN since graduating high school at age 17 ½. I also have a Bachelor of Science degree in biology from City College. I also have a certificate from Baruch College in micro computer programming.
My opinion: It’s been quite a journey. Most of the time it felt like the oxygen of justice seemed to block my attempts to breathe easily. There is a Native American word, ‘Eluwei’ – from Tsalagi, which is a language of the Cherokee, and it means ‘silence’. This necessary silence helps me to understand that everything happens purposefully, perfectly as designed by the Great Spirit. Further, despite my major vicissitude, I am resolved and determined to succeed.
Tell us what your life was like before your brain injury.
Before the injury – I worked corporate business, on assignment at the world trade center because of my micro computer programming skills. I received a call from a medical agency in Manhattan asking me to return to licensed nursing.
I saw that as my opportunity to use my nursing background to aid me in applying to various pharmacy schools in the US or in Quebec, Canada. I desired to become a pharmacist. So I left my job at the World Trade Center in the fall of 2000.
All brain injuries are not the same, tell about how you sustained your brain injury.
The assignment required me to fill in temporarily for two days over a weekend performing nursing duties. The travel to the job was a hardship because on Jan 21st, 2001 it was a severe, snowy, blizzard day. At the job site, there had been no preparation to remove the snow. So the snow packed over the outside door entrance, making it difficult to open.
Over a period of time, this packed snow melted inside the nursing home vestibule and onto the floor. The security guard on Sunday was supposed to take over the duties of the custodial workers, who were off on Sundays. The security guard failed to mop the floor or put down mats to absorb the water. As a result, I slipped and fell, hitting my head severely. I sustained a serious brain injury.
The date of the injury?
January 21, 2001 at 6:45 am Sunday, on a snowy blizzard day.
I was angry mostly that I fell when I realized what had transpired.
There was no immediate outward signs that I had sustained a traumatic brain injury. However, I had a severe headache and pain in my back, neck, and right arm.
I did lose consciousness briefly, and there was a period of disorientation and confusion after my fall. The nursing home asked if I wanted to go to a hospital? I refused because I was afraid the medical agency would not give me future assignments.
I tried to focus on doing my job. I stayed on the job, but wasn’t allowed to do anything because they saw something was wrong with me, so the nursing home did send me home some time later. I was placed on a bus. I took two trains home.
When I tried to take a shower I passed out in the shower. My relative called an ambulance to take me to the hospital. When I arrived at the the Emergency Room the Physicians Assistant (PA) wasn’t concerned about my injury. I was told by the PA I had sustained a “simple bump” to the back of my head. She prescribed muscle relaxants, pain killers, and gave me an ice pack. I asked if I could see a real doctor, and she refused, saying no doctors were on call right now. I told her I was a licensed nurse, and the proper protocol was to give me an MRI or CAT scan, and to keep me overnight for observation as a precaution. The PA stated “don’t tell me what to do”. This is not a compensation hospital. I was sent home. I travelled on a train, alone, after midnight. All this happened January 21, 2001. I was puzzled by the statement this is not a compensation hospital. I fought for weeks after that to get back to the hospital to get the MRI or CAT scan done.
The first week of February 2001 I spoke to a head nurse of the ER at that hospital. She told me to come back to get those tests. The medical staff did not know what they were looking for when they did the tests. Of course, the tests came back negative. They said “this is not a compensation hospital” again. They gave me the name of a chiropractor. I said I was in pain. I was told they didn’t give a damn about my pain, and I should go to the chiropractor.
I went to the chiropractor soon after. He refused to send me to the neurologist or to give me the name of the neurologist. The neurologist wasn’t sure whether compensation would pay him or not. Meantime, I did not know I had a swollen, inflamed brain from January 21, 2001 until I did see the neurologist on April 30, 2001.
Once the compensation was approved I was allowed to see the neurologist. That’s when I was told I had swollen, inflamed brain. I asked him to do an MRI. He said he didn’t need to do that, the EEG was enough. The neurologist recommended for me to go to an opthamalogist and a neuropsychologist.
In addition, I did not fare well legally.
I do not possess legal knowledge. I trusted those who represented me to help me. In 2002 I was forced to sign a contract with my attorneys which essentially closed my compensation case permanently. I did ask plenty of questions before I signed, but I received short, rude, abrupt replies: “This is all the compensation you will receive, and the brain injury was considered irrelevant”.
I was told that in the agreement between the State Insurance Fund and my attorneys it was decided that the brain injury was irrelevant to the final calculations. I received just enough funds to pay my medical bills and other bills. This contract bothered me for years. Then I spoke with my godmother, who was an Italian American real estate attorney. She advised me in 2007 to write to the workers compensation board to find out the truth. So I did. My godmother warned me that the statute of limitations to take action against the lawyers that represented me would be against me.
I found out in 2007 that my attorneys never offered information about my brain injury to the Workers Compensation board. The Board never had the information to consider! They told me they were never informed about the brain injury by my attorneys and by the State Insurance fund. The only information the WC Board had was about my neck and back. Since I signed away my rights to reopen my case, there was nothing they could do.
The importance of good representation by qualified attorneys cannot be understated. Not only did this affect my case, it also delayed my access to valuable help.
As a result, from 2002 until present, I have lived in poverty, and have been homeless and destitute. I suffered identity theft, which is the reason I cannot get social security now.
Describe your path you took to gain sustainable life again? What challenges do you face on a consistent basis as a result of your brain injury?
It has been arduous yet, I am a warrior. I had to take charge in order to regain my dignity and autonomy in spite of the emotional, physical abuse and disrespect I have received over the past ten years. I decided to become proactive in my care, to do research to help me understand more about TBI and to seek help from a few good people.
The challenges I face consist of I have limited use of my right dominant hand and arm. Because of the numbness, I do occasionally burn my fingers and hand of my right arm on the stove, and I have trouble with writing and other things. I am still forgetful. I have to be reminded of appointments and other important business. I get frustrated when I cannot do things easily like I did. Places I have travelled most of my life I have forgotten, and I have to relearn these places.
I sleep only 3 1/2 hours every night, then I nap constantly during the day. I deal with headaches 24/7 without relief, but some days are better than others. I have progressive hearing loss in both ears. I have diplopia and vision convergence insufficiency. Yet I abide.
What is the most helpful therapy, treatment or strategy did you find most helpful?
When I was allowed to go the neurologist on April 30, 2001 I suggested acupuncture because I have seen it work as a nurse. The doctor referred me to an acupuncturist thereafter. Soon after, the insurance I obtained did not consider acupuncture a medical necessity. But it did help me. It did help me to sleep a little better, and it helped to ease the pain a little. The opthamologist was concerned at that time that I did not receive proper care, so he gave recommendations and he said to keep in touch with him any time I needed help. He is the one that diagnosed me with the vision problems that I already mentioned.
The neuropsychologist was very helpful. He gave me work to help my attention deficit and to help me with my vision. He also gave me a miniature computer that was a spell checker, because he knew I liked to write.
As well, Native American meditation has also helped me.
What was it like finding support after being released from the hospital or physician? What role has support played in your recovery?
I did have a few people who assisted me, but overall, there was no real support after the hospital and after compensation. In 2004, I found encouragement from the NY Academy of Medicine Library. The people there were generous and helpful. I also found comfort and knowledge on how to deal with the new me from the Brain Injury Association of New York state. I discovered this organization by accident in 2008. I have been a member ever since. Ms. Rachel Swire was able to take me away from that blind alley. She gave me that life preserver in terms of resources to help guide me. She was able to help me in my writing. Ms Swire was able to accentuate the artistic abilities of people with TBI to express their experiences in living with TBI, which does help in their recovery.
At what moment did you realize you had changed forever? Was there a situation or event that stands out as a pivotal moment that heightened your brain injury awareness?
When 9/11 happened. It took me time to process the enormity of the situation. When I first heard about it, I was in a state of shock. Then I thought about me working there and leaving in the fall of 2000. I felt guilty that I was not still working there, because if I had been, and having a medical background, I could have tried to help those people.
It took four days to really comprehend everything. I was prostrated for two weeks, never leaving the house, staying inside. I missed doctor’s appointments and I missed meetings with my lawyers. I pray for the past 11 years for the families, friends and colleagues who lost people in 9/11. I hope I will be soon in a position that I can pay some sort of tribute to those people lost to 9/11, but right now I cannot because I am in dire straits and have been for 11 years. The only thing I can do is honor them and pray for the people lost in 9/11. Consequently, my whole personality and outlook changed forever after TBI and after 9/11. I am still, in 2012, dealing with the physical and emotional upheaval. And yet I am not defeated
What are the main strategies you use to surmount challenges to live life as a brain injury survivor today?
I ‘ve decided to try to surround myself with people who have displayed empathy, positive attitude and intelligence and who desire to want to learn about TBI. I try to practice my Native American tradition and to remember the Bible in terms of being able to walk humbly and smile when people make insensitive remarks. Then again there are those negative forces which brings my confidence down low so I proceed to act in part.
An illustration: People will make insensitive remarks like: “you don’t look like you’re brain injured because you don’t fit the profile.” So I fire back with a response because I become enraged. “So Einstein, what is your precise definition of what a brain injured person ought to look like?” I receive responses which range from a blank stare to a defensive attitude. But I should be the better person when inane statements are made and approach the situation more like my great grand uncle the Medicine Man and smile and say “have a good day”.
Indeed, there’s a moment where an unexpected event will occur in which the person experiencing that event will know the character of the people who surround him, be it encouraging or discouraging. Either way, a lesson is learned.
An example: There is a person I knew since I was 11 years old. He was my teacher. When I graduated with a degree in biology we became friends. I want to thank him very much for helping me when I needed it after my brain injury. He had access to give me medical and legal information at that time because I did not have a computer and he did. I was very confused trying to understand and navigate. The only problem was he never wanted to learn about TBI and what people go through. I felt like it’s his loss because he could have imparted valuable information to co-workers, colleagues and students about TBI. He could have been instrumental in that regard but he decided he did not want to. In 2010 I had a near death experience at the hospital. A few months after that he gave me a religious gift. Being of Native American heritage, and my family built a Church in the 1870’s that gift was significant to me and he knew that. I thought the gift was to help uplift me after my discharge from the hospital a few months back. Instead he proceeded in asking me questions about my brain injury. I asked him “why now” after all this time. He said he wanted to have a meeting with his family to discuss me without me being there to explain about TBI. I was the subject matter. He told me his oldest daughter is graduating and will be studying for a Masters degree in occupational therapy. I asked him what does that have to do with me? He said he wanted to provide information about TBI because his daughter might encounter people with TBI in her field. I replied “she will” and besides your daughter is an adult, let her approach me herself. Of course, the daughter never approached me to ask me about TBI.
Soon after I took the gift he had given me and left it on his doorstep and I never answered his questions about TBI. He became bitter and angry at me because I gave him back the gift. He did not understand the principle of why I returned the gift to him.
After that, I felt isolated, angry, sad, insulted, and consumed with acrimony. I felt betrayed by someone I loved and admired. Somehow I don’t know, I emerged from that and I forgave him. It helped that a person I met recently at a hospital, a stranger, who is an assistant director/manager over the radiology department wanted to learn more about TBI from me. That helped me to heal. Two weeks ago (in 2012) my former teacher and friend approached me on the street. I told him I forgave him even before I saw him on the street. We are okay now as well, I learned a lesson.
What are your next steps on your path towards your new normal?
There is no new normal for me right now. However I did mention previously I have limited use of my right dominant arm and hand. It’s difficult for me to finish my memoir but I am trying.
I am writing a memoir as a way to prevent any other person with a TBI from being placed in the same quagmire as I was. I know there are people out there who have suffered the same as I did and probably even worse. I hope my memoir will be informative and inspiring to both people with TBI and people without TBI. I hope someone out there can help me finish my memoir soon.
I also wrote two stories recently. One is titled “Consideration”. It’s about my ordeal at a NY hospital in which I had a severe reaction to a radioactive dye called isovue. There are people who are pre-disposed to allergic reactions to radioactive dyes. These group of people are referred to as idiosyncratic. These people who are idiosyncratic suffer allergic reactions which range from mild to severe. I was not aware of the fact I possibly fit in this category of people. Usually a doctor will ask a patient if they are allergic to shellfish. (this is because an allergy to shellfish usually means they are allergic to iodine, the same ingredient used in these dyes and that is found in shellfish). I had never eaten shellfish and did not know I could have an allergic reaction. Overall, this story, Consideration, is a personal account about my severe reaction to isovue. Consequently, I hope my story can help normal people and people with TBI to become more inquisitive and more aware about certain radioactive dyes.
As a result of my experiences at the hospital, the medical staff are changing the questionnaire they use with patients. They will make the questionnaire more informative and TBI related, so this event will not happen again with another person with TBI. They will keep using isovue. They said it was a rare occurrence, only 4 people with TBI had a similar experience as mine. It was not enough to change the entire policy. Most importantly they will give consideration to the caregivers of people with TBI by giving them respect and informing them when an unexpected crisis occurs, and to keep the caregivers informed during and after the crisis has subsided. I am still advocating to avoid using this dye at all, and that families of people with TBI are respected.
The second story is a brief four page essay called “Inflection: An Anatomy of a Soldier with PTSD and TBI”. I wrote this because I wanted to reach out to soldiers who have PTSD and TBI. I wish to write their stories and sketch them, and present it to people to help these soldiers get the help that they deserve, because they are underserved.
I hope somewhere, someone will publish both these stories soon.
I also wrote a song titled “There’s No Time For Crying” (bagpipes). This song salutes heroes and this song is in deference to soldiers in general, but specifically those soldiers of American Indian heritage, for the people at ground zero and for anybody facing an uphill challenge. It’s an anthem for people to be uplifted. I hope it will be heard soon.
As of 2012 I am still going to therapies and trying to get better. It took me almost 11 years to get to the right people. What helps me is the writing and the sketching when I have my good days when I am able to do it. I am fighting battles right now in 2012 for the proper representation concerning my Native American and black heritages, especially the Native American in terms of accurate diagnosis of certain ailments that may be as a result of TBI or TBI related and to demand swift treatment of those ailments without bias or any other delays. I have contacted an organization which in a sense is a ‘watchdog’ over the hospitals, clinics and other facilities throughout the United States because I do not want anybody to go through any unfair inconvenience like what is happening to me.
I want to thank my mother and my godmother (the Italian American real estate lawyer). Both of them have helped me out tremendously. Unfortunately my godmother died recently of a brain tumor. I owe her a debt of gratitude. I also want to thank my other godmother, an Irish American, for her tough way of speaking to me so I will not be so sensitive about other’s opinions about me. She gives me good advice and sometimes makes me laugh. I also want to thank my primary care physician, an Italian American, who is very kind with all his patients and goes beyond the call of duty. He has become a friend. He tries to do what he can in dealing with a lot of bureaucratic inertia with the healthcare system. He is learning from me, because he never dealt with a person with a brain injury before me. I want to thank an Italian, family owned pharmacy who has extended help and friendship to my family for many years and also other merchants in the neighborhood who have helped me and my family. I want to thank others who come from different faiths, Jewish, Muslim, Hindu, Buddhist Monk, and various religious faiths that all pray for me and try to help me as best they can even though it’s a bad economic situation right now. But they try. I thank them all. Indeed as of 2012 I am still living in poverty, destitute, homeless, and cannot get social security because of identity theft. The judge at social security knows I suffered identity theft and he still denies me benefits. However I am a warrior and I remain optimistic. (Maybe sketches seen later). Thank you.
UPDATE JANUARY 2013
I have two updates: One medical and one personal. I shall be brief on both.
I will start with a prolific quote: “The gravity of any decision made usually falls weightlessly in space with an occasional disregard to the rules the laws and the regulations; in fact, the stability and the civility of things seems to become shortened. Indeed, that covenant seal for any person hoping to one day reach that ‘perfection infinity’ requires work which entails respectful engagement and self correction in order to create that ‘balance’, towards improvement.”
The first is the medical issue. No one test should over represent a particular population similarly, no one test should under represent certain populations of people. It’s biased and it’s unfair. I am referring to EGFR. The way it was explained to me by doctors is it’s a sub part of a DNA test for Lupus. It’s used as a statistical demographic to compare one population to another in terms of the prevalence of having Lupus. In other words EGFR makes everyone regardless of race religion or culture African American. That’s because the parameters of this test (EGFR) only focus on African Americans and no one else. I took exception since I am Native American and black American because I did not agree to be part of a research comparison and I did not agree to be part of a DNA test.
Fortunately for both of my heritages, Indian and black, the test came back negative, but still my primary care physician and the technician should have explained initially what this test entailed. I was told I had Lupus like symptoms due to certain triggers in the environment. In progress, they are trying to find a course of treatment for me.
The reason I am mentioning EGFR, for anyone that has a TBI or does not have a TBI and is suspected of having Lupus, they should question thoroughly their physician about the types of tests required so an understanding can be achieved. Be cautious, for my part I will fight to try to improve on this test EGFR so it won’t sound so unfair.
The second issue is personal. There is more apathy versus less empathy in the system that is supposed to protect and prevent. As of January 31, 2013 I am still homeless but I am alive and well with an occasional appendicitis and recuperating from pneumonia. I am going to be fine. On December 7, 2012, me and my 86 year old relative were almost killed due to a dispute between her and the landlord. The reason why I am mentioning this is people who are looking for help whether it is housing or for legal counsel need to be careful and find out who is in charge and who will have their best interests in mind. That means that people who have TBI or elderly should be sure about the history of the neighborhood by asking questions of merchants and other people who live and work in the neighborhood. As far as the Department of Health is concerned, in some respects it does a wonderful job, however, there should be less oversight and more responsibility taken in protecting the most vulnerable. But there should be room for improvement in terms of testing contaminated living conditions if reported by an elderly person or a person with a brain injury. As far as the legal is concerned it should be a gray area not black or white. What I mean: It should not be that a person is forced to live in contaminated and dangerous conditions because the landlord failed to make the necessary repairs, nor should the person be at the point of eviction before legal help is rendered to that person. As far as housing is concerned, the landlord should make sure that the housing is safe and not dilapidated for anyone who is disabled, elderly or anyone else seeking to live there.
My relative continues to live in that neighborhood for 61 years and she has seen it go from an idyllic, safe, friendly neighborhood to a more dangerous and eroded place. That’s why the system that is supposed to protect and help and provide intervention needs improvement so that people who speak out for the conditions are not put in unnecessary jeopardy and punished because they report these conditions to the proper authorities. Some sort of safety net should be in place for the person making the complaints. Thank you for listening to my update. If any further news I will mention.
I am doing as well as can be expected. Today is Dec 17, 2014 one week before Christmas. I wish everyone celebrating holidays all the best, and best wishes for a happy and healthy 2015. It looks like after 14 years I found an attorney that can help me reopen my workers compensation case. He said it would be an uphill battle, but the legal professionals were wrong. I am now waiting for a hearing. Hopefully a hearing will be scheduled in the new year. He said there is no guarantee but he is praying and he has faith that all will be resolved. I would also like to thank those that took the time to comment on my story. It inspires me and helps me to continue to fight, to research and ask questions, and I thank you for that.
As far as my elderly relative, she is doing OK. We hope to move in the new year to a better situation so she can get better.
Imprint has an indelible effect depending on the circumstance. What I am referring to is two issues. The word damage and word rapport. The word damage should never be used to describe a person with any type of challenge, be it civilian or veteran with a traumatic brain injury. A person should practice to use words judiciously and with empathy. The second point is rapport. It is difficult in this day to establish trust and rapport. People are not paranoid if they do not want to reveal a lot about themselves. They are just being cautious. Therefore anybody in the medical field treating a person with a brain injury should try to establish a good rapport with a patient. Especially if that patient is hesitant. The doctor or practitioners should not resort to name calling or accusations or making disparaging remarks about the patient if the patient is not forthcoming. I will elaborate more on both of these issues next year.
My final point – there was an Irish poem that was written. The part that resonates with me:
“The rich man creates the wars but it’s the poor soldiers that finish the story.” I am referring to Vietnam Veterans. I have a VV in my family. He left school at 17 to enlist. He returned at 19 with just a rash. He finished high school and got married. There have been many issues he has had to face over the years. I bring this up to say something about Vietnam Vets and their exposure to agent orange, and more should be done by our government to help them. What shocked me in doing my research was there was a relationship between exposure to agent orange and alzheimers later in life. I will discuss more later.
“A sparrow tears bleed”
I would advise the sparrow to embrace all the negative drama as the withered beaten down rosebud with all its dogma knows that all will be restored to it’s rightful smooth form and that justice will prevail with peace.
Have a good holiday and thank you very much. I will speak to you in the new year.
Addition to Raini’s Story Feb 4 2015
My latest updates are two:
“The board rules state that if a person has a brain injury/mental disability the case should not be settled or closed without medical clearance from the claimant’s doctor.”
The second update entails workers compensation contract 32 vs. Workers compensation contract which considers:
a person with a brain injury’s future medical needs for the need of possible ongoing treatment and provide support for their caregivers to help alleviate some of the financial burdens they will face.
I am speaking as a public plea for assistance specifically legal as well to impart valuable information so that the same fate will not befall someone else. However, if it has then I hope the way I am handling this horrible quagmire will benefit all.
I keep returning to this metaphysical, philosophical, spiritual reference. It’s called Elán Indeed a Buddhist Monk and an American Indian Medicine man (my great grand uncle) both believe and stated that to reach the Elán is impossible because we are human. To strive towards Elán is quite a journey and not without overwhelming obstacles. The main one is pride/power called control, which consumes us. Therefore, Elán is never realized.
Consequently, we as human beings try to strive towards perfection and forgiveness and to do the right thing, but it is never achieved. It’s an arduous task to walk that road towards Elán because some circumstances or colossal force seems to derail any efforts to obtain peace and perfection. Moreover, our time is limited to try to get things right.
The reason why I mention time is humans are born with a certain life span. Of course people are obsessed with time because they want to be remembered in some way. Well, I say take each moment as it comes and conduct our affairs with respect and forgiveness. Because even though the great spirit and the universe sees the day as a thousand years, we as mortals have but that one day. So any decisions made hopefully they will be beneficial.
I feel like for the past 14 years I’ve been thrown into this pit called the “labyrnth of perfidy”. This maze is complex and intricate filled with rudeness, deceit, threats, sickness apathy and so forth, but I am gaining, I am getting closer to discovering that opening towards being compensated for my TBI as well as justice against those who placed me in this situation.
On January 19th my current attorney, who takes on hard luck cases or cases that have been closed told me he was shocked, angry but not surprised at the sheer level of stubbornness on the part of the workers compensation board for not even granting a hearing so that more evidence concerning my TBI can be presented as well as for me to testify.
So my attorney suggested I should file a motion against the Workers Compensation (WC) Board to force them to reopen my case regardless. And that means going to the appellate court because he said that’s out of his area of expertise. However, this attorney will be in the background giving me information and my future new lawyer so I can win the appeal.
I hope my compelling case will be seen by an attorney experienced in the appellate division who will do this case pro bono out of “principle.” Furthermore my attorney who tried to reopen my case found out some disturbing facts which make sense as to why I was forced to sign WC 32 contract. The attorney told me he agreed the reason why my TBI was withheld from the WC Board was because the original contract had my neck and back as the primary injury and that was what was presented to the WC Board for them to make the final agreement. If my TBI was presented on such a WC 32 contract, the WC Board would be obligated to question the veracity of such. Furthermore the WC Board would ask if I the TBI client was “of sound mind” when I actually signed the WC 32 contract relinquishing all rights of ever opening my case in the future. Therefore it was conducive and beneficial for my former attorneys and the insurance fund to withhold my TBI medical evidence from the WC Board.
Because if my TBI was presented then both the insurance fund and my former attys would have to present me with another contract called WC 23. WC 23 is more appropriate for people with brain injuries or some sort of mental abnormalities because these types of people would be compensated for life. So, my attorney who tried to reopen my case stated all of this and said further that dishonesty played a significant role these past 14 years, and that’s why he suggested to me to go to the Appellate Court. He said it would cost $5,000-$10,000 to file such a motion. I told him I could not afford that because I am homeless, I stay with different people and stay at brief times with my elderly relative, she takes care of my medical business therefore I do not have that kind of money. The attorney suggested a legal aid lawyer specializing in appellate division cases. This attorney said he will not abandon me but he can’t move forward because that is not his area of expertise. I just hope whomever reads this latest story who is experienced in appellate division cases will have empathy and contact me. That is my public plea. Again I thank the readers for listening to me I and hope you learn something very valuable about this. I hope for final justice for this grievous wrong committed and I shall keep you abreast as events change. Thank you again.
Well, I sure as heck don¹t remember it. All of my knowledge rests on
what witnesses said. It was just a little over a mile from my house on
December 17, 2013. That means it was also just a tenth of a mile from my
sister¹s house. That turned out to be a stroke of luck for me. As I
went past her house, she was just pulling out of the driveway and thought
to herself ³That looks like David going by.²
Well, just a little further down the road, there was a car sitting dead
still signaling their desire to make a left turn and obviously waiting
for me to pass. There was also someone else pulling up behind that car
and also desiring to make a left turn into a driveway about 25 feet
closer than the drive for which the first car was sitting dead still. It
never occurred to the driver of the second car that there was a reason
for the first driver to be sitting and waiting.
The second driver went ahead and executed his left turn. The cops
measured the skid marks left by my Gold Wing at just 22 feet. I figure I
was going very close to the posted speed limit of 35 because that stretch
of road was well known to have police cars with radar units watching for
speeders. I was probably still doing around 30 when I struck the SUV
that turned in front of me. The impact threw me out of the boot I was
using to apply the brake. I¹m very glad I was wearing a high quality
helmet (Shoei) because my head struck the hardest part of the SUV (the
roof line over the passenger door) and that is where my story really
My brain continued traveling inside my head and slammed into the interior
wall of my skull. Something punched a hole about an inch around and at
least an inch deep in my right thigh. Got lucky there because it barely
missed the femoral artery. As I lay there, my luck actually changed. My
sister pulled up about 15 seconds after it happened and thought, ³I
wonder if David managed to get past here.² Well, I didn¹t. She is
trained as a Red Cross First Responder and immediately took action, when
she realized it was me. With people hollering at her not to touch me,
she straightened my airway and managed to restore my breathing somewhat.
She also called 911 and insisted that they send a helicopter and not a
standard ambulance. She then called my wife and let her know to get
there right away. The wife got there about the same time as the
helicopter and they told her to go straight to the hospital. It¹s only
about 20 minutes from the site of the accident but the chopper beat her
there and had me unloaded and in the ER before she got there.
I quit breathing at least once before getting to the ER, but good EMTs
and the attention of my sister made that a bit of a non-issue. At the ER
they decided that I had a broken leg (which they didn¹t even bother to
splint or treat since I wasn¹t moving) at least three cracked ribs and a
brain hemorrhage. While in the ICU (in a coma for several weeks), I had
a saddle embolism. They said I likely would have died if I wasn¹t
already in the hospital being watched for just such a problem. I already
had a history of embolisms due to DVTs in one leg. Lucky me. They had a
surgeon install a filter in me to prevent clots from getting that far in
the future. I also had a case of pneumonia caused by inhaling stuff I
should have been swallowing. My wife says listening to me trying to
breathe at that time was one of the worst periods in her life. They
sucked the fluids out of my lungs and eventually removed the breathing
tube for the first time in a little over two weeks. Of course, this is
all something else I was told about and for which I have no memory.
So, a little over three weeks after the wreck (I refuse to call it an
accident since the driver of the other vehicle could have avoided his
actions) I was transferred by ambulance to a hospital a little over 70
miles away that has a well-known brain injury ward. Also don¹t remember
that. I do remember insulting the nurses at that hospital and accusing
them of keeping me sick as a way of insuring job security. I was joking
but they didn¹t know that at the time. After I was there for about three
weeks one nurse told me ³I¹ve decided that you¹re a funny guy and it¹s
not the brain damage making you say the things you do.² I smiled and
almost choked on that one.
A month at the Brain Injury ward and they gave me permission to go to the
bathroom without a nurse watching. I still had to ask for permission and
they still liked to have a nurse in my room any time I got up to go, but
it was still a matter of celebration for me. It¹s funny the things that
we decide are worth celebrating. Things like being able to use a walker
to go to the bathroom and not a wheel chair. And finally, being able to
walk the 15 feet to the BR without a walker. I have to admit that having
the walker was a feeling of safety that I didn¹t usually give up, but it
was good to know it wasn¹t required.
Finally about 2.5 months after the wreck, HOME. I said goodbye to all
the nurses and PT folks that made it possible and got wheeled down to the
car. Let me tell you about that 70 mile ride home. It was horrifying.
I was suffering greatly from double vision. I¹m talking about the funny
stuff in movies where you see two people or two cars coming at you and
you have no way of knowing which is the real car. I kept closing one eye
so as to see only one car. The other thing I hadn¹t really considered
was that it had been more than two months since I could remember
traveling faster than a wheel chair. The ride home was quite the thrill.
After I got home there were many adjustments to be made. I could only
shower because sitting in a tub and being able to get back up was out of
the question. It only took making the attempt once in a dry tub to show
me that. Luckily, my shower was built with a seat for my wife to shave
her legs and that works great for taking a shower without standing up.
Using newly installed hand rails to get back up off the toilet was
another one. New ways of getting out of bed without falling down. A
different chair for watching TV and that is a lot easier to fall into and
climb out of. Life was just full of surprises.
Then, of course, PBA. I¹ve only recently seen ads on TV about that and I
know I would have chuckled over it before the wreck because I would not
have understood. Pseudo Bulbar AffectŠ if you don¹t know, it causes you
to find yourself laughing or, in my case, crying uncontrollably at the
silliest of causes. I found myself crying when I talked about never
being able to ride a motorcycle again, having problems relearning
ballroom dance, watching a sad moment in a TV show. Thank the Lord for
Neudexta. Use of this drug allows me to get through the day with no
uncontrollable episodes. When I felt the crying coming on, I would warn
my friends that it was about to happen and it was okay for them to help
laugh me out of it. I can only imagine how it would have affected
someone who was unable to laugh at themselves. Anyone reading this
should know that I would never laugh at them about this condition or any
of the problems associated with brain injuries; but I was, and am, able
to laugh at myself about just about anything. I firmly believe that the
best recovery possible from a TBI involves quite a bit of humor.
Here I am over a year later. I still have a multitude of problems. My
memory is not as good as before. My sense of balance sucks. I can¹t
remember a tenth of the dance moves that I knew before the wreck and my
feet feel like I¹m wearing ten pounds of lead booties on them. Maybe not
important to most of you but, if you¹re a ballroom dancer with more than
10 years of experience; you can imagine how I feel. I have a very
flighty temper now and it was always very tightly controlled. My
handwriting and printing are very sloppy and my printing was usual cause
for strangers to ask me if I was an engineer. In crowds, I find that my
world starts to tilt and rock. My feet and arms have burning and
freezing sensations running through them all the time. I start to wonder
if it will ever get much better and it is sometimes hard to remain
positive. But crying about your troubles never did anyone good.
I hope that writing this down will help someone to know that their
circumstances are not unique. We are not alone and; no matter how bad
things look, someone else has it a lot worse. Life is good.
Second Chance - TBI, Traumatic Brain Injury Survivor hopes to inspire
If you had a second chance at life, what would you do with it?
Randy Davis, a recently Honorably Discharged Soldier of the US Army Reserves, is living proof of triumphing over tragedy. Davis is a Survivor of a Traumatic Brain Injury, TBI, that almost claimed his life. He survived being shot in the head.
Randy recently completed an 8 year term of service in the US Army Reserves. He enlisted at 37 years old, going through Basic Training at Ft. Leonard Wood, Missouri. Davis's journey of being a Survivor doesn't begin here however. Prior to enlisting as a US Soldier, Davis has been in and out of Law Enforcement and Private Security since the early 1990's. Davis has served as a Deputy Sheriff in Richmond, Virginia, as a Police Officer in Norfolk, VA, and then served as a Federal Police Officer in Colorado shortly after 9/11. The unusual thing about this career is that it has unfolded after Randy cheated Death.
Going back to 1984, Randy was a high school Junior living in SanDiego, CA. He had recently left his native Virginia to live with his father and stepmother. Growing up in rural Virginia had Randy growing up hunting and target shooting and planning on a Military career after High School. But fate stepped in to redirect him.
November 3rd, 1984 began as many warm autumn Southern California days do, beautiful. Randy had gone target shooting with some schoolmates in the afternoon, not knowing what was about to transpire. Randy had been roaming the forests, thickets, and woods of his native Virginia for years. He had already been in California for a few months and this was an opportunity for him to go target shooting and have fun. He didn't know his new schoolmates were novices when it came to firearms.
Randy and several new schoolmates went to a canyon area in northern SanDiego, set up some targets and plinked until sundown. After firing several rounds into targets, the lads called it a night. Randy wanted to enjoy the wooded night air for a few moments, separating from the group briefly. The other teens had returned to the pickup truck that had ferried them out to the desert. About 100 yards away, Randy was climbing out of the canyon when one of the lads pulled the trigger on his .22 rifle, several times.
Randy describes what happened next, "I heard the gunshot and a fraction of a second later my head snapped back. The pain was excruciating and I tumbled over an embankment. I was howling in pain as I cradled my broken face, feeling blood pouring between my fingers."
Randy remembers looking up in the moonlight and seeing blood spurt from a hole somewhere on the right side of his face. It turns out the first bullet entered 1/4" from the right corner of his right eye, burrowing through bone, tissue, and brain matter. It came to rest in the right temporal lobe of his brain. A second bullet grazed the left side of Randy's head, just taking a chunk of flesh with it as it sped by at 1,300 feet per second.
Randy remained conscious and crawled his way up the embankment, as he describes like something out of an old western. He staggered toward the headlights and found 4 other scared teenagers who rushed him to the local trauma center in Escondido, CA. The battle to survive continued on that mad dash to the emergency room.
"I had been reading survival manuals and military history, planning on a Military career. Suddenly I find myself in the back of a pickup, one arm wrapped around the roll bar and the other hand held against my gushing head wound. I had a moment of clarity going through First Aid stuff I'd learned over my short 16 years. I realized I needed a bandage to control the external bleeding and pulled an old handkerchief from my back pocket. Then I remember thinking, 'OK I'm going into shock, what do I do for that? Oh yeah, elevate feet, head, and stay warm.' I staggered into the Trauma center at Palomar Memorial Hospital, fully conscious, covered in mud and blood, with a bullet in my brain, but ALIVE."
The survival ordeals of Traumatic Brain Injury, TBI, are not just limited to what happens at the scene of the injury but also continues once the patient is in medical care. Randy had stopped the external bleeding but was still bleeding inside the skull, intracranial, which puts pressure on the brain with nowhere for fluids to go. Emergency brain surgery was performed to remove the bullet and damaged brain matter. No one knew what the outcome would be and at 16 years old, Randy had to go into oblivion, not knowing if he would survive the surgery or not. However several hours later, God allowed Randy to return and begin starting a 2nd chance at life.
He had a depressed skull fracture from the impact of the bullet, and now has a large dent and a question marked shaped scar on the right side of his head from surgery. The psychological and emotional aftermath of this incident was off the scales. As for the rate of the severity of Randy's injuries, one Doctor described his injury as, “catastrophic." At 16 years old, Randy was dealing with PTSD that was ranked off the charts as well. It would consume many years of his post-injury existence.
According to Randy,"I did my own research years later and came across a published study by the Centers for Disease Control, CDC, into TBI. The study said 'Firearm related Traumatic Brain Injuries,TBI, result in a 9:10 death ratio.' So I'm 1:10 that survived, pretty slim odds of survival."
When he turned 18, Randy went to Army recruiters, still wishing to serve his country. After telling the recruiters about his shooting, he was told, “YOU CAN'T EVEN BE DRAFTED!" So Randy wandered, lost for years, not being able to do what he wanted to do since he was a child, serve his country. Randy worked many dead end jobs over the years, still dealing with PTSD and not having any resources. Until he found the National Head Injury Foundation, now the Brain Injury Association of America, www.BIAUSA.ORG, and found people who understood TBI.
With proper therapy and resources, Randy moved forward in life, going back to college, earning an Associate’s Degree in Administration of Justice, magna cum laude. Randy took a job doing Security at a Nabisco factory in Richmond, VA.
Randy pursued a career in Law Enforcement seeing it as a way to still serve his Country. This was several years after the shooting and Randy's relentless pursuit of normalcy. Randy had to teach his brain to work harder and had to fail in some things in life as well in his recovery from an almost fatal shooting.
He spent almost 10 years actively wearing a law enforcement uniform of some kind, both in Virginia and Colorado. But it wasn't enough, and Randy wouldn't stop until he finished something he'd started years before.
In 2005, Randy enlisted, and was accepted, into the US Army Reserves. "I was 16 years old when I got shot, then 20 years later, I'm shipping off for Basic Training!!" He went through the Army Engineer Heavy Equipment Operator School at Ft. Leonard Wood, Missouri to do something other than Security/Police work. Randy drove trucks and heavy equipment and managed to complete 8 years of service in the Army without being shot again.
November of 2013 marked his 29th Anniversary of surviving being shot in the head. He spent the day at his Army Unit in Denver, CO, being grateful. "I have to look at each day as a grace from God. Every day I'm still here, I've been given a second chance at life."
Now Randy works in Industrial Security in Northern Colorado. "I read a story in a local paper in the early 1990's about another TBI survivor. That lead me to find the support and resources I needed to move forward in life. I want to return the favor," Davis says. "The incidents and statistics of TBI are staggering, yet public awareness is virtually nil. I want to be a face for Traumatic Brain Injury, TBI. For other TBI Survivors, don't let anyone tell you you can't do something.
Story of Persevering with Multiple Brain Injuries to Authorship
A serious brain injury in 1992 and four subsequent concussions left me with a brain that had great difficulty with reading, writing and other challenging symptoms. Eighteen years of early childhood teaching and training of others, using a drama/play for learning technique, I developed, inadvertently, provided for my brain development, healing and learning too. The dramatic play I was engaged in, apparently was just as essential for brain healing as it is for brain development in youth! Also, just like one of the messages in my newly published book, is that when we focus outside ourselves in service to others, we heal, grow and find our wholeness! At a certain point in my healing, my brain was able to write more consistently, including poetry- which took my cognition to a higher level. In 2011, I felt compelled to write a story combining fiction and reality to teach about the beauty of the tribe in Africa, I had stayed with since we had provided them with clean water, who had inspired me. I pondered it, for quite a while, on long walks and in the quiet home, I had created, for minimal sensory input for my brain function and healing. One day it poured out of me. It felt quite miraculous to me, remembering a time when Newsweek was read to me, after my initial brain injury. The story was laid out in prose to begin with but I decided to offer the powerful magic of rhyme to youth, just as it had helped me.
I had two concussions actually during the four year production process of creating my children’s book. In 2013, I sustained a serious concussion. This cut dramatically into the production process of the illustrations for the book. Then book’s completion was in serious question once again when last June 2014, I sustained my fifth concussion. I was nearing the finish line with Beaver’s Pond Press. We had some more re-working of text and the design phase, to lay out the text of the book to still complete. All work was halted for a time, including fundraising. I focused on healing, not pushing against the symptoms, listening to what my brain and body needed to heal. I had motivation too, since I have a son to love and a book I wanted to share, with messages that are bigger than me. I had an eight week recovery period. The book “Jelly Beans the Cheetah and Hope” was miraculously launched in early November 2014! It is about empathy, shared humanity- that we are the human family and that we are connected to all, including the endangered cheetah. It is also about perseverance!
The cheetah in the story represents the plight of anyone but a dear friend suggested to me, “you are the cheetah!” Upon deep reflection, I realized he was right. The cheetah represents me persevering with multiple brain injuries. In having served youth through, Jelly Beans Creative Learning, I inadvertently, experienced cognitive improvements, brain healing and discovered my wholeness. In not self- absorbing but giving, loving and helping others, this connection gave me a feeling of being complete. “Connection provides us with a sense of our wholeness.” This is a line from the last page of “Jelly Beans the Cheetah and Hope.”
In the dedication of the book I included “To others with Brain Injury-may this book give you hope to persevere!” In the acknowledgment pages I wrote-“I want to share that I am grateful for every aspect of my life, both easy and difficult, since it provided me with strength and the introspective mind that led me to write. I truly believe that challenges are a tremendous gift if we choose to harness what can be learned from them. I believe that the heart that gave me the desire to write and share comes directly from all of that. I loved the opportunity the share the magic of rhyme for brain healing and development with others. It was a gift to get to share! It felt like a miracle too, since I struggled for many years with reading and writing following Brain Injuries.”
Sending Appreciation and GREAT JOY, HOPE and LOVE SissyMarySue
Wendy Muhlhauser-Author SissyMarySue
“Empowering youth with empathy to spring into compassionate action!”
Let me introduce myself, I Karl Moritz am now ‘Born Again’ but not in a religious way but rather as a TBI Survivor. I think that only a TBI survivor could truly possible understand this because as being ‘Born Again’, one must learn how to start Life all over again, learning and developing one’s self and how to do almost everything all over again. Some learnings are easy and some are difficult. My ‘Born Again’ story started June 29th 2010.
A little into my history; I started bicycling to and from work in 1999 because I wanted to do something good for myself and the environment. I have been cycling to and from work for the past thirteen years at an average distance of about forty miles round trip a day. On the same course that I have been cycling from Nike World Headquarters to SE Hawthorne in Portland, Oregon. On the way home at approximately the eighteen mile mark, I was traveling south on my bike on S.E. Ladd’s Ave. I just passed a small traffic round-about and a Honda Odyssey struck me head on at 25-30 mile per hour by at approximately 5:10 pm. The only witness was the a twenty-five year old male drive who reported to the police that I was headed South while he was headed North and my bike handle bars began to shack and I just fell off my bike and was struck head on and dragged underneath the car for thirty feet. At the initial impact my helmet, back pack and a shoe was knocked from my body.
I no longer call it an accident but rather a ‘Life change’. I fractured my spine in seven, my scull in three and my right leg in four locations, broke my hip and had thirteen titanium screws set in to hold it all back together, had plastic surgery to attach part of my left ear back to my skull. All this trauma, I ended up with a Server TBI as I was in a Coma for thirty two days. Because I was in a coma for that period of time, my TBI was scored at a Server level. There are three scores of a TBI Mild, Moderate and Server and pending on the Glasgow scale. Okay, and I do have very sincere doughts’ what the only witness told the Police what really happened in this accident. I also have to accept that the truth may never be known what REALLY Happened?
Peddling forwards; since my life change I have completed thirteen Bicycle Century event rides. Three of those century rides were on the exact same bike that was in my life changing event. That’s why I find fought in the driver’s statement to Police that I just fell off?!? And this maybe my personal take, but there has been absolutely no communication between the Drive to me or to my family.
When I was initially released from the hospital after three months my nurse told me that I was actually being released early. And she thought that was that I took good care of myself. I initially that it was because I have been a vegetarian for half my life. I did some research and found out that riding a bicycle is in the Top Three Physical Activities that promotes cognition development. This is because you are asking your brain to multi task in many aspect; perception, balance attention, memory & working memory, judgment & evaluation, reasoning.
So now I’m on a “Feed your body, Feed Brain” self-prescribed regiment. This includes Diet (including herbs), Meditation, Brain Training with Luminosity, attending TBI support group meetings, Temp working in my prior field and bicycle riding ten miles a day. (Exercise and diet are important factors in promoting healthy neuronal functioning and therefore healthy brain functioning).
Being creative and loving bicycles. I decided to begin were I left off at by building a bike. Open and read this link to my bike build story. https://plus.google.com/115893960526187521638/posts/fshDszRMV2L
TBI and the accident cost me a lot! It cost me the loss of my House because while I was in a coma I couldn’t make house payments so I had to sign a Foreclosure paper work. My job (Profession) that I was in for half my life and for the past nine years as a Senior Tech. Designer at Nike. I know the path as I have traveled it before and working to achieve as many of my losses as I can.
A TBI survivors advise; Push yourself every day to learn something new and repeat daily, feed your body and your mind daily!
I want to tell you my story, so you never have your own story to tell.
My name is Jeremy Buschmohle. On July 29, 1997, I was a happy 20 year old college student attending Central Michigan University and was home for the summer. My life was great. I had a summer job working at Print Max, a printing company. I was even making money. There was nothing I could complain about on July 29, 1997.
I could never have imagined what would happen on July 30. I was supposed to go out with my really good friend, Matt, but the plans fell through. So another friend, Prince, came over with his car and he asked me to hang out with him. I was the type of person who would rather hang out then stay home and do nothing. And so I made a fateful decision. I knew he had a suspended license but that didn't matter to me. I was twenty and invincible. Since he had a really fast Mustang 5.0 that he had souped up to be able to drive to a drag strip to race other cars, I let him drive his car when we decided to go out. I liked the speed as much as he did. And I never thought anything could happen to me or hurt me. Remember, I was 20 years old and invincible.
But I was very wrong...almost dead wrong. What happened next, changed... my... life forever.
Our destination was a parking lot on Maple and Lahser where everyone hung out. That parking lot is only two miles from my home. We never made it. Less than half a mile from that parking lot we crashed. My then buddy got behind a few slow moving cars and got impatient. He decided to pass them all illegally. He drove into the opposite direction lane. As we were passing he saw a car coming directly at us. There was no way to get back into our lane. The line of cars he had been trying to pass was way too long.
So he thought the next best move was to turn the wheel and take the car off the road. But that didn't work. The driver of the oncoming car had the same idea. Our car was skidding off the road. His car hit the front passenger door causing our car to flip over horizontally a couple of times. I hit my head on the windshield, then the dashboard and then the side window. The car was a 1986. It had no passenger air bags. What stopped my head was the dashboard. The dashboard was my airbag. When his car came to a stop it was on its side with the passenger side on the bottom.
In case you're wondering, I was wearing my seatbelt. And this was no ordinary seatbelt. It was a racing harness designed to protect my lap and shoulders. But the only working part protected my lap. The rest of me was left free to fly around inside the car.
After the impact and the car came to a dead stop. Prince was able to climb out of his window. He thought he smelled a gas leak and was scared the car would explode. Lucky for me there was a sun roof in his car. And he pulled me out through it.
Now, what I just told you is what other people told me. I was unconscious. I have no memory of what happened on my own. I believe God sent an angel disguised as a doctor because he told my friend how to care for me until the ambulance arrived.
From what I was told I was in bad shape. The EMT's, or emergency medical technicians, had to perform an onsite tracheotomy. They had to make sure I could breathe. Once they did that the ambulance took me to the ER at Royal Oak Beaumont Hospital. Fortunately, I was taken to one of the top trauma centers in the U.S.A.
But sometimes even being in a top rated hospital doesn't solve the problem just because you are there. A priest was called in that first night to give me last rites. As you can tell by my being here, I didn't need them. I hope there isn't an expiration date on being given last rites. I'm putting them in lay away for, hopefully, much later in life.
And so I lived. But that didn't mean I just walked out of the hospital. Now the work began. More hard work than I had ever imagined I would have to do in my whole life. I was in a coma for two and a half weeks. Now this is important to know. The longer the coma the harder and longer the rehab. My rehab in the hospital lasted from the day of the accident until December. Five months. And this was only the beginning of my rehab.
From the moment I was in the coma my life as I had known it was on pause. Then when I woke up from the coma it was on rewind, while everybody else's was on play.
I basically had to relearn how to do to everything to take care of myself. I had to learn to walk, talk, eat, go to the bathroom, shower, dress, shave, brush my teeth, and comb my hair among everything else we all take for granted.
So I had my first rehab schedule while I stayed in the hospital. But it wasn't over just because I was finally discharged. The first place I went after leaving the hospital was home to my parents. While I lived there I went to outpatient rehab to continue what began while I was in the hospital.
I lived at my parents' for five years. But I was a grown man now who had never had the opportunity to live on my own. I had never paid my own bills, did my own laundry, or cooked my own meals. I didn't know how to do these things. So it was important for me to live more independently. But I couldn't do it alone.
You might be wondering why, after five years of working in rehab, I still needed more rehab. and assistance from other people. Well, I still had major memory problems. I still did things that were unsafe because if I was doing one thing and got distracted I wouldn't remember to go back to what I was doing. I still had trouble remembering and following directions. My life was similar to the the movie Fifty First Dates. Each morning when I woke up I didn't remember what happened yesterday or how to make it through the new day. New things and unexpected things threw me. Somebody had to help me get through the day.
My first move out of my parents' house took me to a semi-independent apartment where I got help learning the skills for daily living. I got help cooking, cleaning, scheduling my day, learning how to take medication on my own, and everything else people do automatically in the day.
I lived there for a while but it was too far away from my family and friends. Still not ready to be able to live without assistance I moved to another semi-independent apartment closer to the people I care about and who care about me.
In order for me to relearn what I could do before the accident and learn what I had never known how to do I met therapists. I met physical therapists, occupational therapists, and speech/language pathologists. I met psychologists. I met doctors and more doctors. My life revolved around either having a therapy appointment or going to a doctor's office.
For the therapists to help me some of them had to hurt me. P.T., or Physical therapy is really physical torture or pain and torture. Occupational therapy, or OT, became known as Over Time. I was tired and ready to quit for the day. They weren't and pushed me. Speech/Language Pathologists didn't wear me out physically so my energy for OT and PT therapy might return. But after Speech/Language sessions I was sometimes so mentally exhausted that just thinking hurt.
And the hurt was much deeper than just on the surface. I hurt inside. My heart and my brain hurt. I needed an outlet to express the pain I was feeling about what happened to me. And who better to talk to than someone professionally trained to help me through it. So I started seeing a psychologist. Someone I could talk to who could help me deal with all the feelings I had. Feelings about myself, the guy who was driving the car, and how I would live the rest of my life.
Therapy was my new full time job. A job I never applied for and didn't get paid in money to do. My paycheck was recovery. Most jobs are 40 hours a week. The job of recovery never ends. It is a job I never wanted but a job I have to keep doing because I still struggle with daily living.
Everyday is hard. I wasn't able to drive for the first eight years after my accident. That's how badly I was injured. Then, I rejoiced when I did get my driving privileges back.
But, who would have expected that out of the blue, I would begin to have seizures after all those years. And my one independent activity was taken from me until medication was found to control the seizures.
Thankfully, they are now controlled with the medication and that allows me to drive again. And I can do this without assistance from anyone else. But I can only drive to familiar places. If I go someplace unfamiliar my dad has to plot the route in my GPS or I don't know where I might end up.
I work hard. For instance, I work hard to remember what I need to remember and still get assistance from others to do that. I work hard to cook myself a meal and even then I need somebody near me just to make sure I make safe choices and do not burn down the neighborhood. I work hard to make sure my apartment stays clean and I need somebody to help make sure it is clean.
I work hard at my job. Even my job is about rehab and recovery. I work at a sheltered workshop where I am known as the activity facilitator. My rehab program calls for me to plan activities and interact with other traumatically brain injured people. I am both a client and a mentor.
Life can be so challenging that I live in an apartment and get help from the staff who understands traumatic brain injury and how it affects me. But I am not always there.
On weekends I go home to my family. I can't say enough about how wonderful my family is for me and to me. I am so lucky that they have stuck by me since day one. This road that I am traveling would be much bumpier without them.
I wanted to be a regular person with a 9-5 job earning a living but I had to learn that those dreams are probably never going to happen. All because of my limitations from the accident I can probably never work a 40 hour work week because I don't have enough energy to do this. My body and my brain get tired. It's been a hard adjustment.
I am so fortunate to be surrounded by my caring and loving family and friends along with my supportive and encouraging rehab team. How do I handle it? As Joseph Campbell said "we must be ready to get rid of the life we planned so we can live the life that's waiting for us." I am doing my best to do this.
There's a post script to the story. You are probably wondering what happened to Prince. Accidents, crashes, and injuries don't only break up bodies, they break up friendships too. Prince and I, as you might have guessed, are no longer friends.
I told you that the dashboard served as my airbag. Prince was luckier. He had the real one to protect him. He walked away without any injuries.
But he went to jail because of what happened. He didn't have a license because he had already had too many points and had lost it. He was driving on a suspended license when the crash happened. He was out in six months for good behavior.
We don't keep in touch but every so often I run into him. It's not easy when this happens. I will always be reminded of that day. I carry the scars. But, I'm friendly when we bump into each other because my faith in God tells me to forgive him.
BRAIN INJURY ASSOCIATION OF AMERICA
1608 Spring Hill Road, Suite 110 • Vienna, VA 22182 • Phone: 703-761-0750 • Fax: 703-761-0755 National Brain Injury Information Center (Brain Injury Information Only) 1-800-444-6443