Waiting at a traffic light on my way to another very short, stressful and exhausting attempt at work I watch this woman through the windscreen. She is my age, my built, but so healthy, so energetic with her bicycle and her windblown face and hair. She checks her route on a map and heads off into the beautiful forest.
And I remember a time not too long ago talking with U at work about the plans we had for our retirement years ahead in the distant future. And I told her confidently that no matter how tight finances might be, at least I would always have my bicycle and so much time to just head off with a map and some provisions for a great day exploring the world out there.
Those were the days when I took health for granted. Shit. Shit. Shit.
A different road [...] to get used to [...]. But the mind or the heart [...] it was slower these days, not catching up, and she felt like a big, fat field mouse scrambling to get up on a ball that was right in front of her turning faster and faster, and she couldn't get her scratchy frantic limbs up onto it.
The day starts shortly after 6 am. I wake up every day just like that. At least for once my body is dead on reliable as I am supposed to take two drugs between 6 and 8 am. So I swallow the stuff in the dark and lie back for a doze or even more sleep until R's alarm goes. I watch him getting up, his day's pressures and schedules are already noticable on his face. We touch briefly, silently, sharing comfort and warmth. When he goes downstairs I usually sleep/doze some more with the murmurings from the worldservice news coming up from the kitchen.
When he is done with getting ready I go downstairs to watch him zipping up his coat and putting on his warm gloves. Another hug and he is out of the door and I watch him walking through the garden, leaving on his bicycle.
I pour myself a cup of tea and go back upstairs and climb back into bed. The cat follows me. She seems to like me being around at this time of the day. Back under the covers I let the waking up begin. Now it is too cold to have the windows open, so no birdsong, no school kids, no busy neighbours getting into their cars. Instead I silently wait for daylight to take hold and then I read for a while with the cat watching me. I work hard on drawing this out for almost an hour. There is a lot of lonely daytime ahead. Too much time, too little energy.
How I would cherish a speedy morning from not too long ago: Up and shower and breakfast, quick glance through the newspapers, goodbye and off on my bicycle. All motion, brisk, efficient, energetic, ready and expectant. Like a snap with my fingers and knowing, knowing all the time that whatever challenges this day will bring I will manage. In fact, that was always the best part, the challenges.
Up and down. Good days and shit days. And I am still trying to understand what's going on with my body and every good day rekindles this little weak remnant of trust in my body and every shit day I am using all my energy to avoid falling back inside this vortex of chaos and fear.
The concept of being chronically ill, of things continuing in this way is so alien to me. I am still refusing to accept that I will not get well again. I have been so lucky all my life, so incredibly lucky and trusting - so naive, so sure that I can handle life's challenges. All of them, of course.
Well? How about this one? And then this thought: Why?
Sometimes, when we are discouraged by a difficult situation, anger does seem helpful, appearing to bring more energy, confidence and determination. And while it is true that anger brings extra energy, it eclipses the best part of our brain: its rationality. So the energy of anger is almost always unreliable. It can cause an immense amount of destructive, unfortunate behavior.
It is possible to live with this disease. Of course it is. But it is so different and because it is so unwelcome, unwanted, it is bloody hard. Every day challenging myself to get on with it, to cherish positive moments, to bear with the hard stuff, to tolerate accommodate my body's - often dramatic - need for rest. To keep the fears and depression at bay. To accept and maybe one day welcome this new life, to skip over the annoying symptoms and get on with what this illness allows me to do. To let go of the dreams and plans I had which all needed my old, healthy and fit body.
It is a long goodbye.
That's one thing I have found out. There is nothing consistent, nothing coherent about life. We try to trick ourselves by creating a coherent life style with patterns, routines, rituals. Waste of time.
That does nothing to diminish life's inconsistency. And it is what makes life so powerful, so full. Life is never what it looks like, what we think it is.
This is certain: I am, we all are, fragile, vulnerable, destructible. It is so difficult to let myself fall, just fall and be here now with this thought.
I just watched this beautiful documentary about the river Niger, retracing the journeys of Mungo Park. Resting on my sofa I was travelling to Djenne, Sansanding and Timbuktu, on beautifully hand crafted barges, crowded ferries and wading through fields of African wild rice. Women with shiny white teeth, the most colourful dresses and strong voices, I was wondering if any of them had ever suffered from an autoimmune disorder.
They probably don't have the time for something like that.
S told us yesterday that she has been having weird nightmares recently. So I promptly wake up in the middle of the night in a wave of panic - and need to get my bearings, take a look at my surroundings, try out my voice and hearing, touch R's sleeping body and sink back to sleep.
A huge wave of gratitude and relief for being here and knowing that should S wake up like that she is safe also and has B's sleeping body next to her.
I have one child, the world's most wonderful daughter. She was born at home early on a Sunday morning after 33 long and hard hours of labour. She wasn't due for another eight weeks and so this incredibly minute tiny baby weighed barely 1000 g on the hastily produced kitchen scales.
This happened almost 28 years ago. We lived in a commune, had no health insurance in those days, no ultrasound scans, but a wonderful doctor and a very experienced midwife who stayed with us all the time from the moment I started labour, drinking tea, eating dinner, watching Dallas on TV, holding my hand, rubbing my back, listening to my baby's heartbeat und doing all the stuff experienced doctors and midwives do with a woman in childbirth.
The baby, our baby was grand - as they say in Ireland.
She is beautiful, clever, wise, healthy and passionate, an explorer, a nomad, an artist. The world is her homeland and so at the moment, she is living very far away, on the other side of this planet. But she is so close - thanks to all the wonderful gadgets and sattelites that provide almost instant connection.
So when she posts a music video on her facebook profile I can hum along with her.
For me it's an early morning tune, for her it's a lullaby.
Like a surprise gift it has been such a beautiful late summer's day with a brisk, warm, southerly wind, lunch outside and deck chair reading.
I can hear the crane and the heron getting ready to leave for their warmer winter residences. Any day now their noisy formations will fill the sky.
My three short stints at work in my office last week fill me with hope. So what if I can only manage short periods? Driving there, sitting at my desk and working for 1, 2 hrs, driving home and crashing out. Maybe I can do this just as much as being bored at home, shuffling around like a demented housewife and crashing out then.
On Friday Prof S and Dr Z were there and full of sound medical advice and understanding. All are really supportive - so far - reasons to be cheerful. I straightened up and cleared out a lot of useless backlog. And I got a sense of autonomy, of doing something not for the sake of keeping myself distracted, occupied.
So, while I am not getting better, I am at least improving on my coping skills. Slowly.
