What I no longer have

This post was written out on the back of a 16 page patient information sheet from my doctor. This seems to be the new trend, your doctor searches for a website, prints it out and voila, no need for time-consuming discussions or clinical diagnosis, just read what's wrong with you, and choose the drug or surgical procedure from the list of "Treatments" starting on page 4.

I look first at the "Causes" section. It's a short single paragraph which starts "Although the exact cause is unknown, their growth seems to be related to..." I hate this kind of language from scientists, the same scientists who tell us that everything is black and white and analytical and well, scientific. For them to fall back on wishy washy phrases like "seems to be" or "it is not clear actually.." is the height of hypocrisy. Especially when you then are expected to skip lightly over the scanty "Causes" section to the long definitive stricture of "Treatments". I look at my choices, a lot of cutting, slicing, gouging out of malfunctioning flesh and a smorgasbord of painkillers and drugs that carry a long list of nasty side-effects and nothing that addresses a cause.

My doctor knows I want to find the cause, treat the cause and get better. She tells me that it is "the fickle finger of fate" or that's what she means; when what she actually says is "Genetics can sometimes be a factor." I pick up that mantle of family guilt anyway for no other reason than she seems to be saying that it's mine.

So this week I am angry with my doctor, a friendly understanding supportive woman, who doesn't have any answers. She has disappointed a universal expectation in omnipotent science and my own personal expectation that I will visit, be tested and then be cured. So I'm disappointed, my self-pity is just pitiful. My doctor invites me back for a chat in a months time to see how I'm going on. That would be a kindness from a friend but it is just plain annoying in a doctor. A friend would give me more than a mandatory 10 minutes, a friend would acknowledge the big invisible elephant in the room, would sit with me and my frustration and help me grapple with the human condition of not-knowing.

Through my twenties I saw no reason for doctors, didn't understand the need to arrange for my medical records to follow me around the world. When I finally got a symptom and went through the circus of getting on a doctor's list I had in mind one consultation maybe two at the most. Chronic illness was to me some kind of mythical creature, a rare and unlikely possibility. That was before I discovered the so-called 'gaps' in medical knowledge, less like gaps more like The Grand Canyon. It was a shock. The first time I got the medical practitioner's slow nod, sympathetic smile and shrug with a kind smile it was like death walking into the room. The physicality of life and death had gone largely unnoticed by me whilst everything in my body was working OK. And then, the first cracked tooth, the first time I noticed my receding gums in the mirror, the first time I stood up and one leg didn't seem to want to work, the first time I couldn't read the bottom lines on the sight test, the first time I sat in a movie theatre of laughing people and had to whisper "What did he say?". The first time I realised that all of this stuff and more is irreversible - Frightening, frightening, frightening. But there it is. Fear dissipates, and with it comes the realisation that this is also the first time to engage with the mystery that the scientists tell us doesn't exist.. the mystery of life, of aging, of crossing over and what's beyond.

I forget to make my next appointment. I don't need a doctor. I need a guru, a priest, a spiritual adviser, counselling for those who are quietly losing their immortality and finding it, all at the same time.