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Working After Stroke

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Recovering from a Stroke and Returning to Work
By: Megan

It took me six-years and seven-months plus twenty-days to return to the workforce after my stroke; I returned to my profession as a software engineer. Shortly after my injury, I had a calendar where I would mark days off until I could go back. I stopped counting the days after a year when I realized that was not going to happen. All I wanted was for my life to be normal again. I never imagined that it would take me that long to return to work.

Strokes can happen at any age. According to the Texas Traumatic Brain Injury Advisory Council Report (2014), 34% of strokes survivors are under the age of 65. I had my stroke at age 29. It resulted in global aphasia. In the beginning, I could not speak nor could I understand anything. My stroke was bad; it was bilateral. 

I was in formal speech therapy for over four years. Speech therapy is not cheap. My insurance paid for sixty sessions each calendar year. I had to pay the rest out-of-pocket which came from my 401k savings. My speech therapist gave me homework assignments to do that resulted in my husband becoming a part-time speech therapist. Year-after-year, I kept improving even though many medical professionals told me that progress ends after six-months. Eventually, due to financial constraints, I had to start looking for financial alternatives to keep progressing. This was when I started looking into going to BIND.

I tried to go back to work a year after my stroke as my job would be held for me. I wanted to get as much rehab as I could before I went back. My employer would not allow me to return; they said that it was not safe. At this point in my life, I was hopeless. I had to rebuild my life from the ground up. I did not want to give up because it is not my nature. My husband and I discussed different possibilities such as moving to a different area or state. I did not know how things would workout but we kept pressing forward.

I have faced tons of negativity in my recovery. It started when I was in the ICU when the doctors told my family that I would never work again. I cannot count the number of people that tried to reduce my confidence over the entire time-period. However, I had a few people in my corner rooting for me, which includes BIND, PCP, and audiologist.  

When you do not return to work after an injury, depression is a major hurdle. Bills do not stop. I still had student loans even though I was not working.  My student loans were discharged due to permanent disability after three years. Losing your job is an emotional blow; I did not feel like I had a life-purpose outside my profession. Many rehab professionals told me to look at other jobs or to take a part-time job. They suggested that I look at the SSDI ticket-to-work program that allows SSDI recipients to work while getting social security. My life situation did not allow for that since I was on LTD (long-term disability) and SSDI. If I went back to work, I would lose all benefits. I was the breadwinner in our marriage, so I had to make smart financial decisions. In my experience, these restrictions keep people from returning to work. 

My first rehab kept telling me to look for volunteer positions, but I was scared because I was worried that I would lose my LTD (long-term disability). On Facebook, I talked to a woman who was on LTD and she always stressed her limitations on the required paperwork to prevent it from being taken away; I utilized this woman’s tactic. Over the course of my recovery, I volunteered at a few libraries, hospital, and horse rescue. My goal was to gain connections so I could return-to-work somewhere. Before taking my current job, my goal was to work at the hospital that I volunteered at in the IT department, so I did not have to move away from my family.

Attending BIND helped me to regain my confidence. Formal speech therapy focuses on the patient’s limitations; they try to fix what is wrong. BIND focuses on strengths. One thing that I have going for me is my strong work ethic. My injury did not change this personality attribute; all of my rehabs recognized it and BIND recognized it too. I became BIND’s communication leader. If given a chance, I always knew that I would shine. I read leadership books to learn how to model behavior and give praise so that I could make members feel productive.  Helping others helped me regain my confidence. 

This sad story has a positive ending. I returned to work a month ago. So far, I’m thriving in my job. My recovery journey has led me to meet all kinds of different people and situations; this includes doctors, therapists, BIND staff/members, and community volunteers.  I returned to work for my first boss in my first job as a software engineer. With all the twists and turns, my life has a sense of normalcy again. 

What’s Your Word?

By Blog, Newsletter

A New Year

By Diane D, BIND Member

A few years ago, I was listening to the radio on New Year’s Day when the announcer mentioned that she didn’t make New Year’s resolutions; she instead chose a word for the year.  She didn’t just pick the word out of a hat, but prayerfully contemplated the word. I really liked this idea and prayerfully chose my word: Others.

As a former Activity Director at a nursing home, I did many things for others.  I wanted to give more this year. I wanted to be more attentive to others’ needs.  This would be the year I gave myself away.

My goal was to improve the quality of life of the 20-30 residents for whom I was responsible.  I gave my time, my energy; everything I could, I gave but I forgot one important person this year.  I forgot to give to myself.

In December, my health started to fail.  I began having tremors of my hands and neck.  On Christmas day, I was admitted into the hospital with seizures, where I spent the next couple of weeks.  The next year began with a brain biopsy. There was no word that year.

I had a mysterious illness with many cognitive and neurological impairments.  From my hospital stay in January until my next hospital stay in May, I continued having seizures and the tremors worsened.  I could no longer perform fine motor tasks with my hands. I began to have moments when I couldn’t move or speak and other moments where my body would move involuntarily. I had aphasia, ataxia, stuttering, overstimulation, hypersensitivity to lights and sounds, and spent more hours asleep than awake. 

In August, I got answers.  I found out that the medications I was taking to treat my symptoms were causing my symptoms because of my DNA and how I metabolize medication.  Over the counter allergy meds caused the initial tremors and the symptoms snowballed when other drugs were added.  

Now, I had to contend with the withdrawal effects of the medications that were poisoning me. The movement issues lessened but the cognitive impairments worsened and the common withdrawal symptoms, including pain throughout my body, insomnia, anxiety, and overall malaise came on strong with each reduction.  When I started to feel somewhat normal, I would taper again and subject myself to the pain and discomfort all over again, and so it cycled for almost two years.  

Each taper pummeled my body and brain, breaking and destroying it’s connections. Towards the end, my memory was severely impacted — my short-term, long-term, and working memory were all impaired.  I would forget what I was doing just moments before, all the time, and I couldn’t hold onto a thought. My memories from the past several years were slipping away.  I had problems with slowed processing, simple math, reading, and spelling. I struggled to plan, organize, follow directions, and focus my attention for any length of time.  I also had lots of confusion, headaches, migraines, and brain fog. It wasn’t until I was finally medication free that my healing could really begin.

Healing was certainly a good word for last year, but the word that my prayers led to was “humble.” My brain injury pressed the pause button on my life and gave me the gift of reflection. Reflecting on my past helped me to see that I needed to be humbled.  

I had far too much pride in my work.  With all the knowledge I acquired during the previous ten years working in the activities field, I had become arrogant. When you are passionate and study something to such depth that it becomes your primary focus in life and when you receive much praise for your work, your pride can swell if you don’t keep yourself grounded on the source of these gifts- God. A quote from The Prayer of Jabez Journal, by Bruce Wilkinson, says, “You could call God’s hand on you the touch of greatness.  You do not become great; He becomes great through you.” I was not great at my job; it was always God.

Becoming humble has come naturally with a brain injury.  Not being able to do the things I used to do is humbling. Making mistakes because of my memory, stumbling over my words, and not understanding conversation is humbling. Getting overstimulated in loud and busy environments is humbling. It is also humbling when people don’t believe or don’t understand my symptoms.  

On my recovery journey, I have run into many types of people. They are described below:

The Deserter:  These are the people who don’t know what to say.  So they don’t. They may have been a friend before, but after the injury are not heard from.  Sadly for them it is a missed opportunity. Maybe they weren’t meant for this part of the journey.  

The Mocker:  They laugh at everything, but often at another’s expense.  I have friends that poked fun, especially when I would repeat myself.  I might not have realized I was repeating myself, but I knew enough to know that they were laughing at me.  Actually, it was funny… sometimes.  I had my usual shtick of sharing my injury with others, only the people I saw frequently already knew my story.  I just forgot they knew. I don’t always remember what I did last week, yesterday, or this morning, but my headaches and cognitive

fatigue are a never ending reminder of my condition.  I want to talk about other things, but I don’t remember our last conversations or your children’s names, and sometimes your name eludes me. I may need you to help direct our discussions.

The Samer:  These are the people that have every ailment that you do.  People often try to make your symptoms seem “normal,” to help you fit in.  Sometimes they might say, “it’s not that bad,” or, “we all have that.” Only instead of making me feel included, I feel dismissed and invalidated.  I have learned that people can only reference your feelings through the filter of their own experiences.  

The Judge:  They question my condition, symptoms, or decisions.  They might challenge why I can’t do something or why I have to leave early.  Some people may not realize that each day and each hour with a brain injury can be different, even in a moment my condition can change if I become too fatigued. Others may not understand that different parts of the brain affect different functions. My friends were able to learn about brain injury through my experience.

Even my family doesn’t always understand.  Just the other day, someone said that I lost my determination.  Dear friends and family, every day with a brain injury takes more determination than you know.  I am determined to do what I can, but I am no longer determined to be who I once was. I’m not giving up. I am letting go.

It is only when my friends and family love and accept me and my condition without judgement that I feel accepted.  Seemingly some fell a bit short, but each have been here for me in many ways. My friends and family took care of me, visited me, brought me shopping or to lunch, and they helped take care of my family when I could not.   

Truth is, I have been guilty of all of those shortcomings at one time or another: not talking to someone when I don’t know what to say, making assumptions about someone’s condition, saying that I understood someone’s experience when I couldn’t possibly, laughing when someone makes a funny mistake, and thinking that a person wasn’t doing all they possibly could to get well.  I am blessed to have such caring friends and family. They did the best they knew. The only people that can really understand a brain injury are the ones that have experienced it. This is one of the elements that makes BIND so great! Everyone here understands. 

According to 1 Peter 5:5, “God opposes the proud but gives grace to the humble.”  I am finding this grace in my life. I am still learning to be humble in 2019 and I still find ways to give myself to others, making sure to also give to myself.  These words continue to have meaning long after the year is through. They’ve become a part of who I am.

My word this year is “simplify.”  Choosing this year’s word was easy.  The wake of Christmas chaos inspired this word.  I was busier this Christmas. I started BIND, I had doctors appointments each week, and I was finally able to attend parties this year.  Last Christmas I felt poorly and didn’t go out much so I had a lot to make up for.  

When my activities increased, so did my cognitive impairments.  I bought someone a gift, then another day bought them a gift. Sometimes it was the very same gift.  I lost hundreds of dollars in gift certificates (I am still missing $120.00), and I forgot about other friends and family all together.  Everything was a mess! By Christmas week, I just had to let it all go. I still have Christmas gifts sitting on my counter that I never had the energy to deliver.  I love Christmas and I love to give, but now it is time to reign things in and make things easier on myself. I can no longer keep pace with the former me.  

Evaluating my schedule has been number one in my simplification process.  Organizing my appointments and limiting them helps with my fatigue. I use UBER, buy most things online, and have my groceries delivered. 

In addition, I am getting rid of excess things.  My days are shorter and I have many projects that have piled on my plate over the last few years.  It is time to walk away from some of them. Planning and organizing are skills that I had once lost, so organizing my life is not only helpful, but it is therapy!

I have also decided to discontinue my volunteer work.  This is a hard decision that I haven’t quite committed to yet.  I had accepted a job as a teacher at a day center when I was doing better but my cognition declined and I was no longer able to supervise anyone, let alone a group of people.  Overstimulation and fatigue make it near impossible for me to visit the center for very long. I stayed on the board of directors with the hope of getting back to teaching, but it has been a year and a half and I am still unable to teach. This decision breaks my heart.  It is a decision based on the acceptance of my condition and it means leaving behind a life that no longer fits.  

As I heal, I am changing.  I will probably never be an activity director or a teacher again, even though I miss it dearly.  That was a different time, a different me. By simplifying this year, I hope to discover new goals, new projects, and a new me.  By year end, I will create space in my life for my next word.

Pre-Eclampsia To Brain Bleed

By Blog, News

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

Luke 9:11

Depression Awareness

By Blog, News, Resources

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 my 20’s

By Blog, News, Newsletter

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

My Journey After DAI

By Blog, News

~ 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

By Blog, Events, News, PR, Resources

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.    

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