Living With a Disability

I wrote this essay for a collection entitled Amazing Gifts: Stories of Faith, Disability and Inclusion.

My first experience with chronic illness, disability, and faith arrived when I was in elementary school. A girl in my class had been stricken with cancer and had to undergo regular chemotherapy treatments. Her hair vanished and she wore a hat for the rest of the year. All of this was, of course, explained to us as a class on days she was not physically present. I knew that her ailment had to be quite serious because of the extra effort teachers made to prepare us. The more overtly religious among my classmates informed everyone that they were praying for her health and survival. Not being raised especially inclined for such public demonstrations of faith, I myself wasn't quite sure what to pray for or what not to pray for, in all honesty.

I could roughly conceptualize the discomfort, pain, and inconvenience but I could not really apply it to my life. I would nod my head up and down when she talked about the medication she had to take in staggered fashion throughout the day, but that was the extent of my comprehension. The full realization arrived years later when I was in my teens. If I myself had not experienced it for myself, my understanding would have remained limited. Empathy and compassion alone cannot compensate, and this discrepancy drives abelism, in which the needs and limitations of the disabled are often not taken into consideration. Like all instances of privilege, few people deliberately intend to omit the perspectives and particular challenges of the disabled. It's a perfectly understandable problem, but one that nonetheless needs to be addressed.

Returning to my life story, I should note that I was always a fearful, anxious, somewhat melancholic child, apparently from birth. By the age of fifteen, an undiagnosed anxiety disorder coupled up with demoralizing bouts of severe, lingering depression. These worsened with the passage of time, as did their frequency. I soon found myself praying that the pain would lessen and that I might have my life back. These prayers appeared to have no effect whatsoever, at least at first, and I eliminated prayer from my daily routine, except for in the worst times when seeking a distraction from a silent, but troubled mind. Depression slows thought processes and with it the desire to engage with the world. Sadistically, a slowly building depressive episode slowly removes the joy of life and the motivation to keep fighting. Any conversation with God pulls the mind away from omnipresent pain.

I felt distanced from God in those days, openly wondering whether he had abandoned me or whether I was being punished for some transgression. My father, a severe skeptic of organized religion, adopted this same attitude himself, I suppose as a means of coping. As I read the Gospels, I even allowed myself to question whether there was something to the idea of demonic possession in a literal sense. When medical science proved to be of insufficient help, I longed for someone to set the demons inside me free. I was seeking solid answers, but such matters are incredibly rare and inconsistent regarding all diseases of the brain. The brain is a complex organ. Only a fraction of its mysteries are understood with any certainty, which is why mental illness of any kind is a massive challenge.

If I frequented any Biblical book most of all back then, it was a particularly obvious one, Job. Many people who undergo periods of sustained suffering find solace in those words. I was always afraid that what I read encouraged self-pity as I applied them to my own condition. I was, after all, a teenager, a time of usually harmless self-absorption, and with it great personal exploration. In a moderate, but pronounced rebellion against the institutions and traditions of my childhood, I vacillated between periods of great faith and great agnosticism. This was all very normal, but the intensity and difficulty of my diagnosis was anything but.

My senior year of high school rolled around with great fanfare, and for most of the first half of the year, I was even beginning to enjoy myself for once. However, my diagnosis was badly mangled and I was given in excess a medication that slowly began to bring on the worst bout of depression I had ever faced. Shortly before Thanksgiving, the pain was so intense that I began to seriously contemplate ending my own life. I had made half-hearted efforts before, but severe depression begins to slowly, inevitably wear down anyone's lust for life. Returning home from a short shift at a part-time job, I had just about made up my mind to do it.

I collapsed on the cold concrete floor of the basement, my system full of poison, waiting to die. Yet, something made me cry out for my parents, who were only one flight above me. Suicidal thoughts to me always reminded me of some eternal struggle between good and evil. It felt like the forces of darkness were encouraging my death, but at the last minute, those of lightness took control of my body. I've sought to ascribe this experience to many things over time. Perhaps God sent angels to rescue me. I believe now that he knew that I had much greater responsibilities ahead of me and that my continued life was imperative. I am grateful now to have been spared, even though it must be said that significant health challenges continued to face me for years after the fact.

My parents had long assumed, based on months of threats and sincere attempts that this day would someday come to pass. My father lifted me to my feet and away to the hospital. Once admitted, I stayed for two months of intense treatment. I never returned to school, instead being tutored from home while I slowly recovered. The first half of my twenties was touch-and-go, with frequent, debilitating periods of suffering. At twenty-two, I had my first manic episode and was pronounced bipolar. Mania was a different animal altogether, one destructive not just to me, but often to others. And as it subsided, and the pieces lay scattered in front of me, there was no greater anguish than to direct one horrified prayer upward. God, what have I done?

Fortunately for me, enough experimentation with different combinations of medications and therapy proved ultimately successful. Now 30, I have taken daily medications for half my lifetime, and doing so has become long-practiced habit. I don't expect to be cured and I know I should expect sporadic periods of mild depression and mania forevermore. My lifestyle has long since been modified in multiple areas specifically to keep myself on an even keel. I call myself Job in remission, and hope that I don't become Job in an acute state. At the moment, I am dealing with an unrelated chronic illness that has dragged on for nine months, but despite the inconvenience I do have the benefit of knowing that it is nowhere near as painful as was the case for me earlier in life. Having chronic illnesses teaches you to pace yourself and to set realistic long term plans for yourself. And, after the experience in earlier life, I never doubt the existence of God. I may not always understand the plan, but I do know that I am still here for a reason.