On Brain Injury and Invisible Illness

My name is Alex and I have been living with a Traumatic Brain Injury for a little less than two years. This March being Brain Injury Awareness month inspired me to become more active regarding invisible illness on social media, and this led to a startling discovery. I was born with an invisible illness which by age twelve caused further invisible and difficult to treat disorders. Let me explain.

I am allergic to gluten and dairy but was not diagnosed until age 22. These undiscovered food sensitivities made me quite scrawny as a child and teenager. Despite this (and completely unaware of my dietary needs) I compensated with youthful energy and determination. Although I was generally smaller and weaker than other kids my age, I became a competitive endurance athlete through sports such as cross-country running and speed swimming. I also fell in love with martial arts at an early age and studied a wide variety of them over the years.

I could never build much muscle or even body fat. I was teased as “scrawny” at school and asked in semi-seriousness by concerned adults if my parents fed me. I assumed this was just the way I was, and through my love of martial arts developed a warrior mentality which turned my weaknesses to strengths. I learned to use strategy in place of strength and timing in place of speed. I was quick and tough, but that could never be enough.

By age twelve my nutritional deficiencies showed further symptoms in the form of chronic insomnia. With each passing year the number of hours I slept on average per night dwindled. My parents were aware of this symptom but not its severity, and blamed it on my apparent poor sleep habits. As a minor they controlled my access to medical treatment, and so the symptom went undocumented for years.

Sleep deprivation took its toll first in the form of significantly reduced grades and behavioural problems. Over the course of two or three years I went from being an A student to a B- at best, from a friendly class clown to a semi-isolated loner. The adults in my life called this “acting out” and “bad behaviour” and my parents sent me to a psychologist their work benefits could afford.

In the dark quiet room and the counsellor’s comfy chair my mood swings rarely showed. He was a wise and intelligent man and we discussed philosophy, concepts such as mortality and happiness and fulfillment. The talks always made me feel better in the moment, but the problem was not originating in my brain and so the psychologist’s treatment failed.

By the time I graduated and went to University I was sleeping one hour per night on average. Rarely more, and often less. I compensated with binge drinking at night and studying by day. I made it through the first semester with good grades, and then crashed. I became perpetually ill, the food from my residence’s cafeteria providing even less nutrition than my parents’ best attempts at home. I also showed symptoms of anxiety and depression, as I had in high school, although mild and always linked to the most severe bouts of sleeplessness.

Between home, university, and a nine-month volunteer program I joined at age 20 after dropping out of university, I was treated for insomnia by no less than six different doctors. I tried every sleep aid and sedative they could prescribe and everything I could buy over the counter in drugstores. Nothing worked for more than a night or two, and most left me feeling hazy and listless.

After the volunteer program ended I completed a semester at the local college, but again fell ill and dropped out. I held several different jobs for short periods of time, always doing well at first and then getting so sick I had to quit and take time to recover. I lived off welfare more than I would have liked and considered applying for disability, but my doctor turned his nose up at the idea and offered to prescribe more sleep aids.

At age 22 I visited a Naturopathic Doctor for the first time who, after a physical examination and long series of analytical questions, suggested I might be allergic to gluten and dairy, and more sensitive to sugar than most.

A two week elimination diet showed immediate signs of improvement. My energy was more balanced throughout the day, and after the first week I slept better than I had in years. With the addition of a vegan probiotic formula taken in the morning and several nutritional supplements, I felt almost human.

I returned to training in Mixed Martial Arts, which I had transitioned to at age 18 but could never commit to fully due to the extra healing time my nutrition-deprived body required after such intense workouts. I got a job at a local fast food joint and in my free time began developing a plan for my own business and looked for better paying work.

After six months at the fast food joint I was hired as a driving instructor by a local company. The starting wage would be $25/hour, but I would not be able to begin work until after completing a month-long training program that next took place in April. It was early March.

I continued working at the fast food joint through the month until a day that changed me forever. For a long time I felt the better part of me died that day, but I’ve recently learned to look at it as a rebirth.

A metal basket fell from a high shelf and struck me directly on top of the head. The blow caused me to stumble backwards. A co-worker heard the basket clatter to the floor and came around the corner as I slumped against the wall.

I didn’t understand what was happening. I’d taken harder shots to the jaw in sparring and so I got to my feet and laughed it off. My co-worker asked me if I needed to sit down for a while, and I said yes. I hadn’t realized until he asked how confused I was feeling, because the simple yes or no answer took several seconds to process.

I sat down in the office and the manager came in. She was very apologetic because the shelf was posted higher than safety standards permitted and such heavy items were not supposed to be stored on high shelves in any case. She said many things but I don’t recall the specifics. Offered to take me home or to the hospital, which I declined. I’m a warrior. I told myself, what doesn’t destroy you makes you stronger.

After a short break I went back to work but couldn’t seem to make sense of the simple physical tasks I had mastered in six months. After realizing I was wandering from one work station to the next and accomplishing exactly nothing, I asked my manager to drive me home. She complied quite happily.

I went inside and turned on my computer and told a friend online what had happened. She had experienced several concussions in her lifetime and immediately asked me to go to the hospital. I was beginning to feel a little sick, and a little scared, and since by coincidence I lived within two blocks of the hospital, I followed her instructions.

Walking into the emergency room made me feel like a fraud. I was fine, wasn’t I? Just had my bell rung, or something. I can’t remember if the wait to see the doctor was long or short. I can only recall a few of the diagnostic questions she asked me. The obvious ones like did you lose consciousness.

She diagnosed me with a mild concussion and recommended I take the next two days off work to see my own doctor and determine further treatment. She told me to go home and get lots of sleep.

Even after six months of mostly following my gluten and dairy free diet, I rarely slept more than four hours a night. Ordinarily it didn’t bother me. I would leap out of bed in the morning and do deep squats and pushups to wake my body up.

The morning following the concussion I did not leap out of bed. I woke with a pounding headache and struggled to sit up. After realizing I had been sitting there for fifteen minutes, I urged myself to get up and start the day. Squats and pushups, right? My body would not respond. I opened my mouth to encourage myself verbally.

No words came out. My tongue felt like it was shot full of Novocain and my lips struggled to form proper shapes. In secondary school I’d been an actor and singer with impeccable diction. In college I’d aced a course on speaking clearly into a microphone. Twenty four hours earlier I could have rattled off any tongue-twister you cared to name.

I’m not sure how long I sat there (it felt like hours) but I worked and worked until I could say my name. Alex. And then, My name is Alex. Slow and slurred, like symptoms of a stroke I had learned to diagnose in first aid training.

I spent the day in and out of bed, re-teaching myself to speak. My doctor’s appointment would be the next day and I needed to explain what had happened. I felt I was living in a pseudo-reality which would vanish in a day or two. How could the world suddenly seem so different, so difficult?

I asked my mom to pick me up and drive me to the doctor’s office because I couldn’t remember what time the busses came and reading the schedule was beyond me.

I explained the situation as best I could to my doctor and struggled to answer her questions. Any phrases I hadn’t pre-planned in my mind got jumbled in my mouth. She diagnosed me with depression and prescribed antidepressants. I could not have been more confused by this, and asked why she would prescribe antidepressants for a concussion. She explained to me, like a teacher introducing kindergarteners to the concept of math, that I was depressed. The symptoms I was showing all pointed to depression, and she did not believe they were associated in any way with the blow to my head.

This baffled me. A hundred counter-arguments sprang to mind at once and I could extricate none of them from the mess. Feeling hopeless and lost, I asked the only question I could think of.

“Will these make me better?”

“Yes,” she said, “yes they will.”

Within three days of taking the prescribed pills I was sleeping even less and feeling suicidal. I scheduled an emergency follow-up appointment with my doctor and got on a bus that would take me to the terminal. I got confused in the crowd and missed my transfer and ended up walking to the doctor’s office.

What would have been a leisurely stroll a week prior left me winded and sweating with a pounding headache. At the office the receptionist informed me the doctor was too busy to see me, but I could see a nurse practitioner instead. I felt good about this. In my experience, nurse practitioners were better listeners than doctors.

After explaining what had happened and relating the symptoms I was experiencing, I waited a long moment for a response. The nurse practitioner looked me square in the eye and accused me of trying to get some extra time off work. She told me to go home and keep taking the pills and get lots of sleep.

Everything fell apart over the next month. My workplace failed to provide appropriate modified duties, and having no ability to advocate for myself nor the presence of mind to seek legal aid, I resigned early. I kept telling myself the symptoms would be gone soon, the pills would work, and early in April attempted to complete the month-long training program necessary to work as a driving instructor.

I fought my way through the depression but was struck for the first time in my life with debilitating anxiety. My nervous system went haywire, and while forcing myself to attend the first week of classes I went five days without sleeping. That is 120 hours without rest. Unable to digest food and suffering severe back pain, I checked in to the hospital, forfeiting my chance at the driving instructor position due to a strict attendance policy.

The nurses put me in a quiet, dark room and told me it would be a little wait, to let them know if I needed anything. On the soft hospital bed, alone in a dark clean environment I calmed down enough to explain the situation when the doctor arrived. He prescribed a sedative to help calm my nerves and get to sleep, and recommended a serious review of the antidepressants I was taking with my own doctor.

Over the course of the next month, the pieces my life had fallen into shattered. My doctor’s office discharged me from their service for insisting that my symptoms were related to my concussion. My girlfriend broke up with me for not being supportive enough. Six of the people I felt closest to in the world turned their backs on me and whispered to others about how I had become an antisocial hermit.

I ended up applying for disability through a locally funded psychiatrist and was accepted into the program some months later. I continued seeing counsellors and therapists of all sort, but without much success. Feeling suicidal, I called crisis intervention lines on multiple occasions and was assigned appointments with a psychiatrist who gave me Cognitive Behavioural Therapy worksheets for sleep and mood disorders, and told me it was up to me to make them work.

Without the love of my mother and a few true friends, I would surely have killed myself. I suffered in every moment of every day and saw no way things would change in the future.

One sleepless night I called the crisis line again and spoke with a much kinder worker than ever before. When I said I didn’t know where to start she encouraged me to start at the beginning, and I did. I started with the concussion and told her everything since.

The worker referred me to the local branch of the Brain Injury Association, and I called and then dropped in the next day. The only woman in the office was a speech therapist who could offer little outside her field. But she gave me some instructional literature on how to better recover from a brain injury and recommended a brain-training app I could download on my phone.

With these simple tools I saw more improvement in the next few weeks than I had in the past year. I used a massive variety of mindfulness exercises to create long periods of time in which I was highly functional. For the first time in over a year my illness became truly invisible, and I thought maybe it was gone.

I got a job as a taxi driver and put all of my energy into the profession. I made money hand over fist by day, getting big tips with my excellent listening skills and easygoing banter. At night I was wracked by anxiety and panic attacks and swept perhaps a wink.

Before three weeks passed I made a mistake on the job and got fired for the first time in my life. My confidence shattered and I couldn’t seem to pick up the pieces. Without the stress of the job I slept better, but the symptoms of my anxiety showed even more strongly by day.

I kept trying. I found a new doctor and a new therapist who believed I had suffered a brain injury and would work with me to get better. Feeling like someone was on my side helped, but I still struggled with the daily anxiety and the inevitable depression that being too nervous to leave the apartment leads to. I refused treatment for anxiety out of fear of pharmaceutical drugs, certain that with enough time and sleep and relaxation my former confident, grounded self would return.

It never happened, and my mood wavered precariously. But my therapist, for all her pleasantries and pretty language, hammered one lesson home each time we met. That I had to let go of the “old me” I remembered and loved, and start working forward from the day after my concussion.

At first this presented as a logical paradox to me. Accepting the fact that I was a different person following the injury meant I would never be as athletic, or as creative, or as confident or social. So I could not accept it.

Over a few weeks the lesson my therapist repeated sank in. Several things contributed… I watched a video on reconciling logical paradoxes, I began a new meditation and gentle exercise regimen… and I still couldn’t accept the idea of being that broken young man sitting in his bed sounding out his own name. But I trusted my therapist and decided to proceed as if she was right, regardless of my own thoughts.

I scheduled an appointment with my new doctor and explained the symptoms I was experiencing extensively. He diagnosed me with “debilitating anxiety and related depression” and proposed a two-pronged approach to treatment. A full course of anti-anxiety medication supplemented by sedatives to take the edge off and help deal with any preliminary side effects.

We discussed my many concerns at length, but in the end I conceded. This was one of the only solutions I hadn’t tried, and I had an excellent support system in place in case of bad reactions.

The treatment didn’t go smoothly at first. My mood was all over the place and the sedatives threw off my equilibrium. But the sedatives also took the edge off my anxiety, and unleashed the creative mind that had been trapped for almost two years.

Within two weeks I designed new regimens for myself drawing on sources ranging from Bioenergetics and Dynamic Meditation to yoga and gratitude journaling. As my cognitive abilities improved I tweaked the timing of my medications for maximum results.

And then all of a sudden something shifted. I turned a corner in a maze I’d been stumbling through for more than a year and saw an endless horizon rather than a brick wall.

I accepted the fact that I was reborn the day of my brain injury, and started thinking about how far I’d come since then. A little under two years ago I was sounding out my name in bed. I was getting winded from walking up a hill. If a stranger on the street asked me a question I wouldn’t know what to say.

Now I can sing and dance and jump and run and sustain short conversations with strangers. I can sit and write for hours at a time rather than minutes. And I can smile without forcing the corners of my mouth up. Looking back, the progress I have made is massive. It is astronomical. It’s exciting. I’m focused on what I can do now and what I will do in the future… not what I could do in a different lifetime.

This shift in perspective is something I had to share, because I have seen so many others struggling with similar symptoms on social media. There are so many instances of people with brain injuries and other invisible illnesses being denied proper treatment and support that I had to share this whole story. In hopes that it will inspire… something. I had to write this for my own catharsis, but I’m sharing it out of respect for the thousands of people with brain injuries who are banding together to raise awareness, this month and always. There are so many people with stories similar to mine and they need all the support we can provide.

For myself I’m optimistic about the future. My body and mind are not as strong as strong or swift as they once were… but I remember a scrawny boy who beat strength and speed with tactics and timing. I’ve got a lot to learn from him.


11 thoughts on “On Brain Injury and Invisible Illness”

  1. I cannot even come close to expressing in words how much reading this has inspired me. Thank you x infinity for sharing this! I’m still “new” to the brain injury thing and your story is just what I needed to come across. You have made (at least, I’m sure there’s sooo many more) the difference in one life.

    1. Stephanie thank you so much for expressing that. Up until a few weeks ago I was in a very bad place and hoped that sharing my story would provide some inspiration for anyone in a similar position. If you haven’t already I might suggest searching for Post Concussion Syndrome or Brain Injury support groups on facebook. They are full of loving, experienced people who offer a lot of support and guidance to anyone in need.

  2. Alex. I am sharing your post, if you don’t mind. My biggest passions in this life are celiac and gluten free awareness – and my family. You happen to greatly resemble my son who also happens to be gluten free – and who also sustained a brain injury – and who also is a writer. I couldn’t help but to feel such a connection. Keep on going! What an inspiration. You do have great places to go! I will be sharing your post on my FB page ‘Gluten Free Respect.’ You are a fighter! and I am so glad to hear of your optimism!! This is the post I shared about my son: http://www.dsimpsonbooks.com/blog/my-son-journey-through-recovery-from-a-tbi
    A couple posts later I shared some sad facts about gluten free and special diets in medical facilities.

    1. Debbie thank you so much for sharing! I’ve been sharing it mostly with brain injury support groups in honor of the month but at the end of March I intend to transition to food sensitivity awareness and invisible illness in general. I’m considering launching a youtube channel on living with invisible illness, it seems like a great way to raise awareness especially in the younger population. And I looked at the link you shared – your son’s story is amazing and inspirational! Thanks for being you Debbie 🙂

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