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August 2019

My Journey After DAI

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~ Submitted by Myung

My journey of recovery from DAI…

One night in April, 2019 when my sister and I were watching TV. A news anchor was talking about a woman who took off her clothes in public and harmed herself. My sister’s response was “Crazy”. I told her, “Sister! She might not be crazy and might be a head-injured person like me. I also took off my clothes at a park in April of 2015 when my therapists brought me there”. Honestly, I did not remember that I took off my clothes, but my therapists told me about it in December of 2015. I was only beginning to gain awareness of my symptoms in late October or early November, 2015 and at that point, I just started to how to prevent them. For a long time, some people who have had Diffuse Axonal Injury (DAI) like me have sadly been treated as crazy people. As a DAI survivor, I’d like to explain what DAI is and what I have experienced. 

In the middle of 2014, my neuro-psychology doctor wrote a report saying that DAI involves the cortico-cerebellar pathways, specifically including the midline cerebellar regions, the vermis, the reticular activating system, and the hypothalamus. She wrote that I had been presenting with moderate cognitive impairment of sensory perception and integration, modulation of affective and behavioral response, working memory and sustained attention. She also informed about DAI that is produced by acceleration and deceleration of the brain in the skull; it is more common with lateral acceleration rather than sagittal acceleration, the junction and peri-junctional areas between the brain stem and cerebellum appear to be the most vulnerable area to DAI. She argued that, since axonal damage in diffuse axonal injury is largely a result of secondary biochemical cascades, it has a delayed onset, so a person with diffuse axonal injury who initially appears well may deteriorate later, thus, injury is frequently more severe than is realized at first. She also asserted that diffuse axonal injury can occur in just about every level of severity, with concussion thought to be one of the milder forms. 

I used to complete all my tasks and responsibilities effortlessly at work, school, and home. But I cannot carry them out anymore because of two injuries at work. After my second injury, I just did not know what had happened to me. When my co-workers found me bleeding, I was not able to speak or move. I could hear only their voice. I tried to go back to work 3 times for a year, but it was not successful. I could not make a base of a denture in the right way, hold small items in my left hand, remember the procedure of my job, and learn new work at all. I felt hot at my work place despite that it was a cold winter. At home, I never used a heater in winter, 2013 and 2014, and my room temperature was always colder than 63 degrees. I also had terrible headaches, so I pricked my head, in order to relieve the pains, with sharp items like a ball point pen, clip end, or pointed plastic tip of a cutter knife, etc. I had to open the door because the smell of the work place sickened me. I also had to squint my eyes in order to see better at work, at home, at school, or on the road.

In December of 2013, right after the second accident, I drove my car, but I had several small accidents and made a lot of mistakes; I hit my co-worker’s car at a parking lot, hit a car that was in front of my car at an ATM line of a bank, drove my car on the grass at an intersection, drove in zigzags on a round bridge, got a ticket, lost my way, and so on. Finally I realized that I had to stop driving. My symptoms started to show up within two weeks after the 2nd accident. Finally my treating doctor took me out of work at the beginning of February, 2014 and I was isolated in my small apartment for about 3 years except for the time I had doctors’ appointments.   

I also tried to go back to school in 2014, but I had to give up because I could not concentrate on well in the classroom. I would take off all my clothes in summer because those made me too hot. I had to watch TV with subtitles, because the sound hurt me. I could not even stand the sound of the toilet flushing or the water running, another person’s touch, and I needed help with simple tasks like bathing. I was not able to sing a song, could not even listen to the music, and had to whisper in order to prevent my voice ringing in my head. I was not able to call people longer than about 5 minutes because of symptoms like ringing, burning, and a sensation of exploding in my whole head. I could not use a laptop longer than a certain amount of time because I would feel myself getting hotter and hotter, worsening headaches, the sensation of bursting under the pressure, and the other symptoms. I had tinnitus, dizziness, dry heaves, tingling, severe headaches such as a stabbing pain with an ice pick or an arrow, eye pain, ear pain, tongue pain, rash on the back of my neck, itchy sensations, and so on. My skin became pale, dull, dry, and flaky. Especially there were lots of dead skins on my forehead. I could not even eat hot temperature, spicy, or hard textured foods. I had eaten little portions of ground grains, fruits, and vegetables because the smell of food made me sick. I was finally diagnosed with Diffuse Axonal Injury (DAI) in August of 2014, but I did not know what it was and realize what I had to deal with.

For several months at the beginning of 2014, I slept for longer than about 22 hours a day. I missed many phone calls and most of my friends had left me. Starting in about the middle of 2014, I was not able to experience deep sleep, sometimes I could not sleep even for an hour.  For almost 3 years, I slept or stayed in my small bed (half size of a single bed) that looked like a cave. It was the only safe place that blocked the environmental obstacles causing my symptoms. In fall of 2014, my family members found out my feet would point outwards like a duck when I walked. I would also sway so that I needed to brace myself against a wall or other support. 

When I had doctors’ appointments in 2014 and 2015, I always had to deal with the environmental obstacles such as lights, temperature, sound, and smell at a car, parking lot, elevator, exam room, and so on. Sometimes, I could not endure them, so I sat on the floor or stayed under the table. I also collapsed at a park, store, church, parking lot, and in a chamber and an exam room. Sometimes, I could talk with the doctors, but sometimes, I just sat on the wheelchair at the corner of the exam room, watching people’s conversation.

In March of 2015, very fortunately, about 15 months after my second injury, I was prescribed a medication (Namenda) from another doctor. DARS also started to give me medical supports in late 2015. Neuro-therapy was one of the medical supports I received through DARS and in the fall of the same year, I was able to begin my slow journey of recovery. At the beginning of the therapy, I was not able to stay next to a small stream at a nature preserve longer than for about 5-10 minutes and listen to the sound of birds singing. Even the wind would hurt me. I could not open my eyes looking outside from the car or stay in the car longer than for about 30 minutes. I was not able to finish my food at a restaurant or pick up the vegetables I wanted from the refrigerator of a grocery store. But eventually, I became aware of how severe my symptoms were, and learned techniques to help prevent them. 

In spring of 2016, I was still suffering from my symptoms, but I was recovering gradually. I received prism-glasses in June of 2016 and improved tremendously since then, especially my gait and endurance. But, I did not have even one place to continue my recovery after getting released from a rehabilitation program on the last day of 2015. In those days, I could join the BIND program. In the first several months at BIND, I could not walk okay or stay longer than an hour, but still attended the program to continue my recovery.

In summer of 2017, I was able to go to Detroit for the first time since my injury, even though I had to deal with a TSA staff who tried to hold me at the airport of Detroit. I was also able to work at libraries as a volunteer, even though I had some issues for about 2 years. Sometimes in 2018, I still collapsed at stores because I could not endure the environment. But those events did not make me stop, especially my desire to recover. I continued to attend the BIND program and was recovering constantly.

This year, I was able to go to my birth place and saw my sister 6 years after my injuries. I had difficult moments because I was still suffering from many sensory problems, but I could cope with them. Until now, sometimes, I meet environmental obstacles that I do not expect, have a hard time dealing with them, and cannot do well. Sometimes, I forget to take the medication or the moment that I have to stop working, then my symptoms come back. When that happens, I am very disappointed, struggle, and stick around near my small bed for several days, as if dead, but I still get myself together for the next stage of my life. 

In September of 2014, my neuro-psychology doctor wrote in her report, “In mild to moderate forms of diffuse axonal injury, recovery is possible, with the mildest forms of diffuse axonal injury often resulting in few, if any, long-term issues”. Lots of my doctors and therapists were convinced of my recovery like my neuro-psychologist assured that my recovery was possible. Although I have experienced set back several times, I have been constantly recovering from moderate injury since the fall of 2015. And now I am writing this essay about my recovery from DAI hoping that some brain injury survivors including those with DAI can read this. I know there are many brain injury survivors who are thinking they cannot recover as I thought for several years. But I believe that everything can be changed if they can get the right medical treatments, do not give up their recovery, and/or have somebody’s support. I hope people who have been struggling because of DAI can get some information about it and have a dream for a better life than they have now. I also hope non-disabled people can understand disabled people, who became disabled due to brain injuries, better than before, and treat them more fairly.  Everyone should keep in mind that we do not know our future. I also never expected that I would become disabled…

Special thanks to my boyfriend and his family, my sons, sister, brothers, and friends. 

Also appreciate medical experts such as Dr. Katrina Belen (Clinical Neuro-psychologist of Neuro-Hispanos), Dr. Daniel Thompson III (DD of Workers’ Compensation), Dr. Christine Johnson (UT Southwestern Medical Center, now a director of Neuro Skills CNS), Au. D. CCC/A Lisa Richards (UT Dallas Callier Center), Dr. Jaye Crowder (Royal Creek Psychiatric Center), Dr. Charles Shidlofsky (Neuro-Vision Associates of North Texas), Paige Anthony (OT) and Katy Walsh (PT) with the other staff (Rehab Without Walls), Jamie Yoo (Counselor). 

Thanks a lot to organizations such as Brain Injury Network of Dallas (BIND; Valerie Gotcher with staff, Karl Heller with members, Nueva Vida members, Emilie with volunteers, interns, and donors), Bohyunsa Temple and Zen Center (Zen master Jeeahm Kim with members), Coyote Ridge Elementary School (Bethany Watts; librarian), Lewisville Public Library (Gay Yarnell; accounts supervisor), DARS and/or Texas Workforce Commission (Kelly Holloway), SPAN Transportation, and DART Paratransit Services.

Press Release: BIND Us Together

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August 2, 2019– BIND: Brain Injury Network of Dallas, a 501c3 nonprofit corporation based in Plano, Texas, is excited to announce the publication of “BIND Us Together: Restoring Purpose, Fueling Hope, and Connecting Brain Injury Survivors to the Community.”   

About the Book– More than 30 members of the BIND program – survivors of stroke, traumatic brain injury and brain cancer – came together and wrote about the most challenging times of their lives. This book contains incredibly deep stories of perseverance and immeasurable strength. Each member has relived some of their worst days in order to reclaim power of their situation. The ultimate goal of publication is to help others understand the needs of people who have survived a brain injury, and in some way return the purpose and connection BIND members have found by joining this dynamic program. The book is available on Amazon for the Kindle and paperback. All proceeds will be donated directly to supporting BIND program expenses. 

Inspired By– Without the drive and organizational leadership of BIND member Jenny T. and editing provided by BIND member Taylor S., “BIND Us Together” would not be possible. Further, the publication of the book was a team effort between more than 30 program members and BIND volunteers like traumatic brain injury survivor and author Donna Valentino, plus photography provided by stroke survivor and long-time BIND volunteer Dean Stone (Spectaveris Inc, owner/operator). Further, the book was created in honor of one of the program’s founding members, James “Jim” Goodman, “without him we may have never found each other.” Before his passing in early 2019, Jim contributed the first story in “BIND Us Together,” titled “Heart attacks, strokes, and cancer….whatever.” The forward was contributed by BIND Founder and Executive Director Valerie Gotcher and acknowledgements were written by Jenny T. The book was also inspired by participation in the Unmasking Brain Injury project, a profound and therapeutic mask-making activity aimed at increasing public awareness and advocacy for brain injury survivors across the globe.  

About BIND– The Brain Injury Network of Dallas is a community center for people living with the effects of an acquired brain injury. BIND operates the first and only Brain Injury Clubhouse in the state of Texas, which is its primary tool used to serve survivors. At BIND, staff and program participants, called Members, work together to run all aspects of the program. The BIND Mission is to provide tools and a bridge of support to adult survivors of acquired brain injury so they can reconnect to work, life and the community. BIND is a proud member of IBICA: International Brain Injury Clubhouse Alliance.  

To qualify for Membership– Members must be 18 years of age or older, have a documented acquired brain injury, be independent with self-care and use assistive devices independently, be willing to participate in a working community, not be a threat to self or others, and, have transportation to/from BIND in Plano, Texas.