Dances With Wolves

I am a Leo by star sign. I was born in the Year of the Horse.
But these symbolic animals mean little to me.

The animal that haunts my life, through day and night, is the Wolf.

I had never heard of the disease Lupus when I was diagnosed with it at 18. The doctor who delivered the news to my parents and myself, did so cheerily. He told me I had a mild form of the disease and I would probably never even notice it. He prescribed hydroxychloroquine, told me to go away on holiday, and with another cheery wave, stepped neatly out of my life. Lupus, which is Latin for Wolf, is only part of the disease's name. It is actually called Systemic Lupus Erythematosus. Systemic because the disease affects a patient anywhere, everywhere. And erythematosus, derived from Greek for 'red' referring to the vascular effects: the butterfly rash across the cheeks, which can scar, as it has done in the case of the singer Seal.

Quinine, which was prescribed so enthusiastically by my very first doctor, was 'discovered' for Lupus in 1894. Since then, there has been another new 'discovery' in the 1960s in the form of steroids. Since then, nothing. Nada. Just the horrors of drugs poached from other conditions like cancer (Methotrexate) and transplant therapy (Cyclosporine). Fifty years, and this illness, so romantically symbolised by the wildness of a Wolf and the tenderness of a Butterfly, eats away at women all over the world. It is never mild. It is never forgotten.

Flannery O'Connor, the Southern American novelist, died on 3 August, 1964 at the age of 39. She painted her own self-portrait through her letters, and was writing right up until her death from Lupus. She hated the disease as you can imagine because it interfered with her writing.

8 March, 1964

Me, I just got out of the hospital where I had my middle entered by the surgeons. It was all a howling success from their point of view and one of them is going to write it up for a doctor magazine as you usually don't cut folks with lupus.
8 June, 1964

I am still here - into the 3rd week. I had a transfusion Sareday & another Sunday. I don't get any information out of them that I particularly understand but then I'd have to study medicine if I wanted to keep up with myself. I don't know if I'm making progress or if there's any to be made. Let's hope they are learning something anyhow.

16 June, 1964

I asked [the doctor] today when I could go home. Well, he says, we can begin to think about it now. Well, you begin, says I, I been thinking about it all the time. So we are beginning to think about it.

24 June, 1964

I've had four blood transfusions in the last month. The trouble is mostly kidneys - they don't refine poisons out of the proteins & therefore you don't make blood like you should or you lose it like you shouldn't or something. As far as I am concerned, as long as I can get at that typewriter, I have enough. They expect me to improve, or so they say. I expect anything that happens...

O'Connor is not the most sympathetic of writers. Have you read her? There is an alarmingly grotesque nature to her fictional characters, but in her letters I find the echo of my own voice, the frustrations of my own limitations and worst of all the sheer ignorance and lassitude of 50 years of no new treatment.

quotes from 'Letters of Flannery O'Connor: The Habit of Being' ed. Sally Fitzgerald