Giving Voice

Where do you go when you resent having to live?

The room is mostly dark, backlit by a dull side table lamp, vague shapes are all I can see beyond the harsh glow of my laptop’s screen. I haven’t left this room, barring trips to the bathroom or to fix a peanut butter sandwich, in two days. People are anathema right now and so I hide in the soothing tones of noise cancelling headphones and the safe disconnect of a tv screen. I do not like my life.

You would be justified in asking, “why?” and, indeed, that is the subject of my story. If asked how I am doing, like most, I typically reply in shallow and insincere but socially acceptable phrases like, “Oh, I’m doing alright. How about you?” It seems I barely register the lie anymore. Yet, I have felt my inner self’s desire to be heard growing in my heart like a scrub-tree clinging to the side of a cliff; stubborn and refusing to let go. Shall we start at the beginning?

Like many others I grew up in a household that wavered between low-income and lower middle class. I was blessed with caring parents and a strong love for life. I had a sense of purpose, goals, and dreams. The real story begins a little over ten years ago. My wife was finishing her master’s program, we were expecting our first child, and I was working two jobs, one of which was in my chosen field, my area of passion.

Then the first bomb fell. One day while I was working at the warehouse, the fulltime position that paid the bills, I began to feel disoriented. I found the closest chair and sat, I could hear my coworkers asking me questions, but couldn’t manage to respond. My boss drove me home and dropped me off. Several visits to doctors, neurologists, the hospital, and a couple of months later I received a letter informing me that I had been let go for not updating them on what was wrong with me. The trick was the doctors didn’t know either.

As time progressed, so did my symptoms. Bills began to stack up as the money in the savings account began to shrink. Three months after the symptoms began, I was out of both jobs, unable to drive or even walk on some days. We were forced to give up our home and friends and move halfway across the country to live with my parents while we attempted to get back on our feet.

Riding in the moving truck with roughly ten hours left to go, my dad informs me that he would be divorcing my mom; bomb number two. Over the next year I watched my family implode as I learned that my perception of a strong and happy family had been delusion from the beginning. My wife and I celebrated the birth of our son, sent out over one hundred resumes each, and struggled to maintain our family amid heartbreak and mental health crisis. I continued to struggle through ever worsening symptoms, a part-time job, and the rejection of every resume while hoping desperately for a way out of the hole we were in. The hope was seemingly answered in the form of a job that would return my little family to the area we had been forced to move from.

The new job was for both my wife and I as house parents at a residential care facility; it seemed perfect. We got the opportunity to work with children in need and I could hold a job because my wife would be there to facilitate the driving and days when my symptoms would keep me from functioning. The first few months went well, and I continued my search for a doctor or neurologist who could tell me what was wrong with me.

As months went by, I found myself more often suffering through hours long episodes of twitching, convulsing, and seizing up. The administration at our facility changed and support for the staff seemingly evaporated. Our cottage environment turned ugly as decisions were made based off what was good for business, rather than the children. Eventually the job became an unsafe environment for my son, my wife experienced a breakdown, and we were forced to quit. An acquaintance of ours had an old house, run down and empty, and offered to rent it to us for $250 a month. My wife took a job at a daycare and I stayed at home with my son.

Finally, my latest neurologist had a diagnosis! Bomb number three…

Sorry for the interruption. I needed to plug in my laptop and took the opportunity to brew some decaf coffee. I am not much of a coffee drinker, but I do enjoy the flavored creamers. Tonight’s choice is pumpkin spice, a little out of season, I know. I have migrated to my chair in the living room. Everyone else has moved to their beds for the night and the steady ticking of the clock and clicking of the keyboard are the only sounds left to distract me.

So, where was I? Ah, yes, a diagnosis. A small abnormality on my brain causing epilepsy. This same diagnosis had been dismissed by my last neurologist, but the new one assured me he had seen it before and was even able to tell me many of my symptoms before I shared them with him. It was a relief to be able to provide a name for what I was facing, and we began testing out medications. Several unsuccessful medications later I asked my neurologist if I would be able to work fulltime again. I was bluntly told that my ability to work was not his concern, that his goal was just to get me partially functional again, and that he would not help me receive disability.

Now, allow me to clarify. I did not ask for him to help me get disability. I desperately wanted to return to work and pursue the passion I had aimed my life at since I was thirteen years old. Yet, I was keenly aware that I was running out of ways to support my family. If my own doctor did not see full-time employment as a reasonable goal, yet refused disability as an option, I was worried about what that left me to say the least. I decided to seek another opinion.

The next neurologist I saw barely listened to my symptoms before telling me he did not think there was anything he could do for me and dismissing me. So, I let go of doctors, diagnosis, and disability and took a job serving at a local restaurant. I worked my way up through several promotions until I was responsible for all in-house training and employee paperwork and spent most of my time in an office. During the 5 years I worked there I left many times in the middle of a shift seizing in a chair or in the floor and had to call out many others. Management was more than understanding and I worked hard to repay that understanding.

In the background the symptoms continued to worsen. Eventually I had to give up that position and I returned to college, hoping that a master’s degree would help me secure a career that I could manage. A year into the program the episodes began to affect my breathing and I ended up hospitalized. I found myself having periods of weakness that prevented walking, or even sitting, I had times I would struggle to breath, and I could not muster the ability to focus. Looking at screens, bright light, harsh or competing sounds, stress, and lack of sleep all made the symptoms worse.

Suffice it to say, I had to leave the program. With no where else to go, I was back to living with my mother. This time, alone. That, however, is a story for a part 2. Midnight is fast approaching and tomorrow I get a ride to go pick up my kids for the weekend. They are my reason for living and the only drive I seem to have left.

I just finished my coffee and if you are still with me allow me to say thank you. What I have written here represents my best attempt to give a short account of my physical history over the past ten years. Yet, this is only half of the story. If you are still with me, I want to say thank you for helping me give voice to the inner part of me that just wants my story to be heard. I would like to invite you back for part 2 of Giving Voice.

Now, if you will excuse me, I need to go brush my teeth and see if I can find that perfect position where you have enough cover to stay warm and feel the weight on you shoulders, without it making you too hot to sleep.

Good night.