stop

I must stop this childish hope for a remission or even recovery. When the doctors tell me that I will get better - probably - they are as much in the dark as the next person. At least Dr. K. doesn't say it any longer. This morning after he took my blood he encouraged me to get some physiotherapy not because it could bring about anything related to recovery but simply because it will allow me to get out of this passive state of waiting and enduring the roller coaster ride of my overactive immune system.

What I need to concentrate on is to accept the life I am in now. I must stop this nonsense of hoping and waiting. Accept that I am unable to get back to my job, my work, my lovely office. Accept that I may never work again, never go on long cycle rides again, the lot. Shit, I had a great life so far, I have been around and had many adventures. So let's try and close this chapter and figure out a way to handle this whatshallwecallit mess.

Last Friday, with a lot of trepidation, I let R persuade me to a meal in a restaurant. We compromised on an outside table where I could rest my head against the wall and we did not stay longer than necessary. But I felt high as a kite afterwards. Today, I am so shaky and ill, this would be unimaginable. So maybe these will be the high points in my life now: to be able to spend an hour in a restaurant without falling apart. It's nothing compared to cycling the Rhone valley or hiking through Lo Zingaro - whatever made me think life could go on and on like that?

Incapacitated

It's like a curse. Whenever I have a good day or even a couple of goodish days there is a real crash like today.
The hardest thing about it is that during these couple of goodish days I cannot help but feel hopeful. When things are easier, when I can spend a part of my day actually moving about and doing trivial stuff like cooking dinner, sweeping the patio or even cycle around the block (not all in one day)- life becomes so utterly wonderful and easy and everybody is simply lovely and I can see and smell and cherish...
And then I battle through the night and get up with this roaring heavy head, my balance is out and I am shaking and shivering, nauseous and the thought that less than 24 hours ago I was out there smiling at life completely floors me.
So now my head is crowded with doubt and worry: Hasn't this happened before when drug no 1 was lowered to this level? Is drug no 2 ever going to work? What else is going on? Was I too active?
The worst is that no one, absolutely no one will be able to answer this. What have I done to get this crappy disease? Couldn't it be something a bit less systemic, a bit more specific?
Autoimmune disorders strike women three times more than men. Not fair! Not fair at all.

Running upstairs

I heard the phone while I was in the laundry downstairs and only when I spoke into the receiver upstairs in the kitchen did I realise that I must have run upstairs.
I RAN UPSTAIRS!
There is life left inside you after all, old girl!

paradise

We arrived in paradise early on a Sunday morning after a long and exhausting flight. There was not much of an airport, we stepped down right onto the tarmac as the thick moist air took my breath away and sweat started to trickle down my back. The heat seemed to go right through to my core, my joints loosened up, my muscles relaxed and for the next three years I felt languidly alive throughout all of my pores right down to my fingertips and hair-ends.

In the first cold and damp winter back in Europe, I would often lower my arms into the bathtub where S was messing about before bed time and close my eyes and try to think myself back to this hot comforting feeling. In the mornings waiting on the platform at Seapoint sheltering from the heavy cold wind blowing in from the bay listening to Paul Simon through my headphones singing about effortless music from the Cameroons I asked myself why we came back to this place where pale people dressed in shoddy black and hurried through windy city streets catching smelly busses with dirty windows.

That first Sunday morning was a shock to my system. We had read about paradise, its history and politics, traditions, food, tourism, etc. poured over all the pictures and maps we could find, met people who had been there and who told us about it. But nothing could prepare me for the intense light, the contrasts of thick greenery, shiny rocks, deep blue sky, the shimmering turquoise ocean, the frangipani and jacaranda smells, the Sunday morning noises and - black people everywhere.

There I was, self-proclaimed feminist, unionist, anti-apartheid activist with an overblown and pompous agenda surprised by the fact that – yes indeed – all people in paradise appeared to be black. At first it was hard to recognise individuals, to see beyond the sea of black faces. Many weeks later I found myself staring at this white hand holding onto the handrail in a packed bus veering around a bend thinking what a strange skin colour and realising with a jolt that I was staring at my own hand.
Arriving at Heathrow shivering and cold almost three years later confronted by a mass of pale unhealthy looking faces, I was equally surprised and for a while unable to distinguish individual features.

my mother

When I was six or seven years old and in primary school about five of us used to meet in the mornings to cycle to school together. Well, this was in the "good old days" when parents just opened the front doors and let their kids head off into the day.

At the school the bicycles were parked on racks under a large corrugated sheet roof. One morning someone's bicycle got damaged, nothing dramatic but obviously intentionally. It quickly became a serious issue around school and in class. We were all grilled and I told the teacher that I saw soandso do it. Did I see it myself? Did someone tell me? Did I imagine it? I cannot say. But I still remember the strong feeling of being convinced that I did the right thing.

Back home in the afternoon, there were phone calls. My mother was back and forth calling me inside, asking me again and again. What did I say, what did I see and how angry this other kid's mother was at me because I clearly was lying. This went on well into the evening. My father could not be bothered to get involved, while at this stage several mothers had phoned, called to the house in person and generally cornered my mother who in turn got more and more mad at me for messing things up with the neighbourhood.

At some stage right before bed time I could not stand it any longer and broke down sobbing and told her that maybe I did not see it after all? She was so relieved she dropped the towel she was using to dry my little brother and ran to the phone to call off the posse getting ready to march on our house.

The next day in the school yard at break time the boy I maybe had seen damaging the bicycle threw a stone in my face. My mother was mad once again because she had to take me in the car to get my glasses fixed.

The small scar next to my right eye took several years to heal.

A.

She works in the same building, on my floor. We talked at the staff Xmas party two years ago. She cycles to work along some of my route and so we exchanged our delight with the chestnut trees and the snow and the horses and cycling through a mature forest after work. Occasionally, she brought one or both of her (pre-)teenage daughters to work.

Last week she phoned me. She had been asking about me having not seen me around for a while and was told I had something serious.

She told me that eight years ago she was diagnosed with cancer. That she spent months in the same clinic I was in after Easter. She spoke about isolation wards, face masks, multiple infections after chemotherapy, hoping and waiting for a bone marrow donor, her five years of treatment and her annual check up days back at the clinic. She told me about her fear of big crowds, of infections, her lack of energy that renders her unable to work fulltime and of her joy of being alive.

She told me that I will get better.

Wednesday evenings

Every Wednesday evening for the past three weeks and for the foreseeable future just before the main evening news start on TV I wash my hands really well, tear two little sachets with sterile wipes, twist open the cap of the injection set, screw on the needle and remove the safety cover. I clean a bit of skin just below and to the right from my belly button with the first sterile wipe, stretch it between index finger and thumb of my left hand, take a deep breath and with my right hand insert that fine needle into my skin and push down the lever - or what ever it's called, must get the proper terminology eventually - to inject my weekly dose of MTX. Next, I use the second sterile wipe to clean any spills as I've been told they can cause skin irritation. I pat my belly and lean back and hope for the best.

Needless to say I never imagined I would end up doing this, injecting heavy duty medication with a list of potentially life threatening side effects into me AND feel grateful for being able to do this.

One restless night later: What went fairly well for three weeks appears to bring about fairly unsettling side effects. I feel as if an electric current is running through me. Another thing to bear out.

father

This is the strangest thing that being ill has brought me. He phones, he drives long long distances at the drop of a hat to bring me to and from doctors and hospitals. He messes about with car seats and air conditioning and a selection of cds to make the car journeys as enjoyable as he thinks he can. He gives me his strange version of pep talk and shows sincere concern and affection. I feel I never met this man before.
And even weirder is the fact that I cherish it all.

Expectation

Like a child before Xmas I wake every morning hoping it's over. And after the first joyful moments of expectation I give in and settle for relief that at least I am not worse or that I did have a good couple of hours sleep or a visitor to look forward to.
But hey! At least I am not worse.