October 26, 2019 Masquerade Gala
Hello! My name is Meghan G. In 2004, at 8 months pregnant with my son, I developed pre-eclampsia. It is pretty scary, and the only cure for it is the delivery of the baby. During my pregnancy, I was very irritable and gained very little weight. I was also nauseated most of the time. I started to complain of not feeling well. I slept more than usual. In March of 2004, my ultrasound indicated that my due date was to be June 13. At that time, the doctor said that the baby was very small–around 4 pounds. I also had swelling in my right hand and complained of pain. I was told that I had heartburn, and was given Pepcid.
On April 26, 2004, I called my mom and told her that I was swollen to the point of crying, and thought that I was in labor. My mom told me to call my doctor and inform her of the situation, involving my back and pain in my right side. I called the doctor’s office, and I was told that they would call me back.The phone call was returned three days later, on April 29th. They said I was doing too much and that I needed to stay in bed. The doctor’s staff did not tell me to come in and to see the Dr. I, then, woke up on April 30th with a very bad headache, and my right side was hurting. At 8am, I was vomiting in the kitchen sink. My sister asked me if she needed to stay with me but I was unable to answer her. She thought I was mad at her but she went to school any way.
The day continues. My mom began calling the house and called from 2:00 PM until 3:10 PM. No one is answering. My dad and sister came home from school to find me having a seizure on the bed at 3:30PM. My dad immediately called 911 to have them take me to the hospital. I arrived at the hospital at 4PM. I was unresponsive. My mom and my ex husband arrived there at 4:15pm. I am also having respiratory problems and my blood pressure was 145/100. My doctor arrived at 5PM, and I was transferred into labor and delivery. My doctor tried to do a natural birth, but when she did my blood pressure shot up to 212/130. My baby’s heart rate fell to 60. My mother was asked to leave the room. I was taken into an operating room for an emergency c-section.
My son, Tyler, was born at 5:30pm weighing 3lbs and 8 ounces. I was comatose, and I was taken for a cat scan. The doctors came out and told my mom and husband that I had a massive brain bleed. At 8:00 PM, I was taken to Tyler, Texas by helicopter for immediate surgery. My son was transported to Dallas by ambulance, because they had only one helicopter and I was considered the more critical patient. My son was placed on a ventilator and arrived at 12:30, May 1st. They did not expect me to survive in the hospital at Tyler, Texas.
I was in a coma for a week. However, God knew my two kids needed a mom. My mom hung up scripture verses in my room, along with a picture of my son. The scripture verses my mom hung in my room were Mathew 18:18-20; Luke 9:11 and Proverbs 15:30. No hospital staff thought I would make it out okay, but I did; and my son did as well. Even our pastor didn’t think I would survive. However, God had other plans for me.
God has shown me that life is very fast. We don’t know when we are going to die. I almost died at age 23. But, he knew that my kids needed me. I became a real Christian whereas before I was not. Even though I forget things, I laugh it all off and say that it was from a brain bleed. I am glad that He let me live and have a relationship with Him and my kids.
And the people, when they knew it, followed him; and he received them, and spake unto them of the kingdom of God, and healed them that need of healing
To apply, please review the position description and send your resume and cover letter to Valerie@TheBIND.org. Serious inquiries only.
Depression affects around 18 million Americans (1 in 10 annually). It may not appear as a broken leg or something physically wrong but it is a medical disorder that dominates the brain. Depression symptoms can include withdrawal from activities, loss of pleasure, hopelessness, and suicidal thoughts. It is a debilitating state of mind that infiltrates you with negative thoughts and without a support group of friends or family those thoughts become your reality.
For people with traumatic brain injuries, depression affects 3 in 10 people. It is difficult to gauge when someone is depressed; it could be a year later or right after your injury (WebMd, 2017). Speaking as a seasoned TBI survivor, it came later for me. When I began to process what had happened to me, my life completely changed gears. I think many people with TBI’s can relate to this. TBI’s can make your whole life change.
If you start to notice that you feel sad or depressed most of the day, have a loss of interest in usual activities, or eating too little or not enough, it is possible you are depressed (Mayo Clinic, 2019). If you go to any self-help website or look-up treatments for depression, you will likely get a number for a suicide prevention hotline. If you are having thoughts of injuring yourself or suicide, please contact the suicide hotline immediately. You can call or chat online, https://suicidepreventionlifeline.org/. In my unprofessional opinion, taking medication or talking to someone a few minutes to come off the ledge is a temporary fix. It puts a band-aid on the outside so you look fine to everyone else. However, really your soul is damaged and you’re suffering. The most beneficial way to treat depression, rather than numb it, is to join a support group, or talk to a licensed counselor. Also, do things that genuinely make you happy.
With depression it is most important to never be alone when you’re sad. That’s when negative thoughts seep into your mind and worsen your mood. For me, it helped to do crafts to express my feelings, like drawing and painting, I also enjoy writing. Community is crucial for healing.
~ Livia, BIND Member
Stroke in Your Early 20’s
Just 2 years ago, it was just after my 21stbirthday when my symptoms increased. I could not get out of bed eight days later. I had a massive stroke.
An injury at this age affects everyone differently. Some will walk away untouched, some with a journey of a recovery, others not at all. I’ve been a lucky one, but there were challenges even to this day.
Your life may just never be the same but, you are who you make yourself to be.
On the day of the stroke, I could still manage to eat and drink until three or two days later; I choked and it got worse. The stroke, in the end has caused me the following: double vision with an eye that just keeps moving up and down, numbness in the entire left half of my body, imbalance, poor cognitive function, eye sight problems, and difficulty with memory and logic.
Yet, over the course of two years of prayer, faith, rehab, and determination; I have been walking, talking, and eating all foods. I did start from the wheelchair with slurred words and total weakness throughout my entire body.
However, this 22 year old just will not give in, and neither should you. There was depression, limitations, and dependence, but when you persevere and just keep moving through the storm at the end you do find a rainbow. Obstacles I face now have been and will continue to be college, reputation, work, and just life in general.
In your 20’s you are just becoming an adult with college, getting a job, and what-ever your mind is set on. Here are some of my troubles now:
With work, I still have imbalance issues plus other limitations from birth. I worked at a veterinarian’s clinic as a kennel manager before the stroke. Due to new limitations, the loss of strength and interest, it might just be time to visit TWC which used to be known as DARS. I was fortunate for my employer; they kept my spot and waited for me. Most people just usually get laid off. Unfortunately, my limited hours may not fit my employer’s needs.
Since I just started school and depending on the class, different types of challenges came at me; these include logic in math to memory in history. I have been working with ACCESS at my college to help me get through these classes. Due to the numbness in my left side, which was my dominant side, my right hand has taken up the slack. My typing is faster than my writing.
I was used to being a full time Kennel manager who ran, biked, drew, walked, and bathed her dog. I was a person who had excessive energy, cooked, cleaned, sewed, nit, loved to drive, and be independent. Now, I am a 22 year-old who trikes, draws, gets creative, learns, drives, cleans, cooks, and continues to improve in everyday activities.
Then, there are hallucinations from time to time. It is always out of the corner of my eye and the second I glance to see it, it is the same second I realize, “Oh Man” it was never there. While I can determine hallucinations from reality for now, what about 30 to 40 years from now?
Then, we have the cane! Have you ever seen a 22 year old with a cane? Now you have, or at least you are reading about it. With school around the corner, I know the cane will or might grab attention, and if so, bring it on! I have a testimony to tell.
How does having an injury at such a young age affect someone? What obstacles have you had to overcome for a young person with a brain injury?
The answer is different for everyone.
~Mariam, BIND Member
~ 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.
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.
Written By: Chris B
My stroke occurred in February 2015, unplanned obviously, and very much unwelcomed. Many of my challenges have been summarily defeated/overcome. I have defeated most of my paralysis; I can now use my effected side and jettisoned the cane; speech is very good, but the one ailment that is ever-present for many, regardless of the type of brain injury, is depression.
Part of the unavoidable growth/challenges forced upon many stroke and TBI survivors is the psychological impact of life change as well as overall brain chemistry change due to injury.
Not everyone becomes depressed, but, a sobering half of all people with TBI are effected by depression within the first year after injury. Even more (nearly two-thirds) are effected within seven years after injury. That’s right– it can increase over time.
According to The Model Systems Knowledge Translation Center, in the general population, the rate of depression is much lower, affecting less than one person in 10 over a one-year period.
More than half of the people with TBI who are depressed also have significant anxiety.
In the big picture, everyone can imagine reminiscing about past life events, not different than an athlete realizing they can’t compete at the same level.
Getting over an ended relationship is never fun – the parallels are similar. As with all of these analogies, visiting the past is better than living in it.
Easier said than done, but, listen to your wellness team, family, church, neighbors, and get help if you or others notice behavior changes or overall withdrawal from society. It’s a very common reaction post brain injury to want to cocoon and remove yourself from interaction, but, staying active and finding friends/purpose/goals can help a lot.
The bottom line, GET HELP, be it, discussion, physician-prescribed medication, counseling, finding a hobby – all have been proven to work and it will be a forward step on your path to a better future.
Fortunately, I’m mobile and can drive, so I was able to increase my social circle by joining a gym and volunteering at a farm museum.
I had the fun effect of crying for no reason (commercials, speeches, church hymns…); medication worked for me without impacting my personality.
Keeping busy is an often-prescribed cure for mood change, which can be difficult as the drive/inertia is often low post brain injury. Group activities and a standard schedule can help with accountability for activities.
BIND is a place where members can find people with similar situations and thoughts from various backgrounds, and the environment can fill the void of lost friendships/coworkers and exposes many to the successes of the recovery journey.
The group activities and responsibilities we undertake help with one’s self-esteem and purpose.
I’d strongly encourage someone who has suffered an acquired brain injury to check out BIND or any local stroke/TBI support group.
Submitted by: Livia
Aphasia is a condition that steals your communication skills which can include verbal, understanding, and written. This usually happens with a brain injury including stroke, TBI or it can be the result of a progressive disease. The main treatment for aphasia is speech therapy. In speech therapy, patients learn how to execute language skills.
Symptoms can include:
- Incomplete sentences
- Not being able to comprehend conversations
- Confusion with words and not making sense
Personally, I have mild aphasia because I had a cerebral aneurysm and it makes life more difficult. I refrain from talking to unfamiliar listeners because I am afraid of what they will think of my voice and judge me. There are approximately 2 million people in the US affected by aphasia. 84% of people have never heard of the term Aphasia. I can understand everything when people talk to me and I do not have a problem with word finding; My speech is just slow and a tad slurry but still intelligible.
How is aphasia treated?
Well, I am glad you asked. Doctors prescribe neurological tests to patients who have survived strokes or traumatic brain injuries. The neurological tests include object identification (i.e. spoon or fork) which determines the severity of the patient’s aphasia. A speech language pathologist can provide therapy to a person with aphasia and help their communication skills. When people hear my voice, they assume I can not understand what they are saying which is untrue. There are six different types of aphasia:
Broca’s aphasia: With this aphasia, it is difficult for the person to produce words and lengthy sentences. It is also strenuous to find the appropriate words they want to say as well as the formation of the word is difficult. Typically, they understand speech relatively well and can comprehend reading but writing is challenging. Broca’s aphasia is often referred to as nonfluent aphasia due to choppy and strenuous quality of speech.
Nonfluent aphasia: The patient has sporadic and laborious speech, resembling severe Broca’s aphasia. This patient is, unfortunately, restricted in their speech. Reading and writing is not beyond elementary level.
Global aphasia: Out of all forms of aphasia this is the most severe; The patient can make few recognizable words and have difficulty understanding speech or not at all. People affected with global aphasia can not read or write. This aphasia is usually observed directly after a head injury and has the potential to improve rapidly. However, with more extensive brain damage, it could result in a lasting disability.
Fluent aphasia: In this form of aphasia, the patient has difficulty interpreting conversations but their speech is clear and connected. Yet, do not be fooled if they make no sense. In severe cases, they sound like gang members speaking slang. Fortunately, reading and writing abilities are not impaired.
Anomic aphasia: This occurs when the person struggles with finding the word for the thing they want to talk about. It occurs specifically with nouns and verbs. Their speech is fluent and grammatically correct but it is full of vague words. Difficulty finding words is as evident in writing as it is in speech.
Primary Progressive aphasia: This is a progressive neurological syndrome that gradually impairs language capabilities. Unlike other forms of aphasia, this is a neurodegenerative disease that is not a result from a brain injury. Primary Progressive gradually deteriorates the part of the brain responsible for language. First symptoms include speech irregularities then eventually memory loss.
I have global aphasia but mine has become significantly better. Researchers are currently investigating the use of medications, alone or in combination, with speech therapy to help people with aphasia.