My father had chronic rheumatoid arthritis throughout his adult life. My memories are of a man progressively crippled by disease who refused to let it affect him more than absolutely necessary. He died, when I was eighteen years old, from infections his body was unable to fight after years on steroid medication. Many years later my mother asked me had I ever resented the limits my father’s condition imposed on our family. Her question astounded me. It had never occurred to me to think like that. He was simply my Dad.
Things were very different with my mother and sister. My sister was diagnosed with manic depression (bipolar disorder) in her twenties, after I had moved away from home. My mother struggled to support her, and her own mental and physical health suffered as a result. My father kept his pain and struggles largely to himself but the distress of my mother and sister were only too obvious. Their illnesses and need terrified me, and I distanced myself from both.
Illness first visited me personally in my early twenties, when I developed dermatitis on my hands and arms. It was painful and inconvenient but never affected my life seriously. I used steroidal creams when it was severe but on the whole I accepted it as something over which I had little control and would learn to live with. After several years, the condition cleared for no obvious reason and did not return.
A few years later I was hospitalized for ten days following an episode of acute abdominal pain and bleeding. It responded to anti-inflammatory medication, which I took preventatively for two years afterwards. I remember attending an out-patient appointment, six months after being discharged from hospital, expecting the results of some diagnostic tests. As I walked to my appointment I could see only two possibilities: I’d experienced either a nasty but limited inflammation, or the first visitation of some serious, chronic, and perhaps life-threatening condition. I recall feeling calm, balanced, and prepared for either eventuality. In fact, the test results were inconclusive, and the doctors had decided further tests weren’t in my interests unless it flared up again. I left the appointment feeling disappointed. Any diagnosis, even a serious one, seemed preferable to doubt and uncertainty. Fortunately, the condition never troubled me significantly again.
In my thirties, a friend developed multiple sclerosis. I knew almost nothing of the condition, and never researched it sufficiently to understand what it meant or was capable of. We lived at opposite ends of the country and weren’t often in touch, although we’d previously been close. In the early stages, her symptoms were mostly physical. She spoke pragmatically of the impact illness would have on her life, and was defiant in the face of the challenges it presented. However, her physical and mental condition deteriorated far more rapidly than anticipated. I was utterly unprepared, and watched helplessly as the woman I’d known as a dear friend was overwhelmed by illness, despair and grief. She died, far too young, at the age of forty-three. I wrote to her every day for the last two years of her life, but never once in that time picked up the telephone. I visited her home only once, after she’d died, to attend a memorial ceremony.
Looking back, I feel I squandered the opportunities life offered me to develop a compassionate understanding of illness and its impact. My stoic, almost fatalistic, attitude may have served me in dealing with my own illnesses, but left me incapable of responding with compassion to the needs and distress of others. I was paralyzed by the belief that I was supposed to make things better, to make the pain and the hurt go away, to fix things. It would be many years before I learned to open my heart and simply be there for those I cared about.
I’m still learning.
Gum on My Shoe: One Step at a Time with My Bipolar Best Friend
Chapter 2, "The Way of Illness".