There is a psychology to any illness, whether you have chicken pox or a broken leg. There is a particular psychology to a progressive illness or disease, one in which the pain, loss of mobility, and exhaustion are all framed in a race against the clock. The matter of you walking or not, or living or not, is a matter of time and timely treatment and, occasionally, of timely miracles. The sense that time is slipping from you and taking with it your potential to live well or better or at all makes your heart race. The squeeze of time shortens your breath and flips your stomach. It makes small talk and eye contact difficult, and it pushes you to the edge of every seat, one leg rapidly shaking and tapping. Up and down, up and down. You are ready to take flight at any given moment.
Another thing occurs as you begin to identify with yourself as sick or disabled: you think you are too young. You feel ripped off. The irony of Kienbock’s, as well as many other much more serious conditions, is that it generally affects the “young”. Kienbock’s most commonly affects those aged 20 to 40. People just starting their working and family lives. At 37, I am a grandmother in the Kienbock’s family, but I have young children, a new husband, and a new business. I’m just getting started, I feel. I don’t think of myself as old. That youth is a relative concept doesn’t truly become clear until you’re older…or sick. And as they say, youth is wasted on the young.
You believe that the medical profession should be rushing to treat you. You’re a young, vibrant contribution to the world and they’re just letting you waste away. Doctors and medical caregivers, however, have a broader perspective of illness and aging. They realize early on that the big secret is that most of us don’t just suddenly keel over when we’re 90 and go gentle into that good night.
No, the secret is that our bodies start to break down slowly, lose function bit by bit: bursitis by herniation by emphysema by cancer by toothache. The secret is that there comes a day when one or several "medical" conditions, however minor or serious, exist in your body and there is no cure or treatment, there is simply management. Your body and its activities may be forever limited or altered and there may be chronic pain.
That doctors know this and that their patients can’t fathom or won't accept it is the great disconnect in medical care.
I can’t explain my new, sad sense of self to anyone, not my husband or my closest friend. I feel isolated and pathetically, alone. There is no need for this, for what is tantamount to self-pity, yet this new introversion smothers me, traps me.
My mother, as mothers do, sees the crazy in my eyes, my disconnect from “real” life and unbeknownst to me, is working her way up to a semi-friendly takeover of my medical care. When all is said and done – the numerous phone calls and faxes and costly private consultations (yes, there is a two-tier system in Canada!) - good old Mum has landed me a surgeon. A surgeon who has even treated Kienbock’s.
Dr.G works out of St. Paul’s in Vancouver. Each way, it is a 4-hour car and ferry journey from my home. But you know what, it’s all good because what I need most of all is:
Help!
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