Horizontal falling

Look. I can only promise boring and ugly. Also no happy ending. But it might make you feel luckier, prettier and happier.
My story begins, fifteen years ago, with an unusual journey. My friend Fern was a veterinarian in Connecticut and came out to visit me in Africa every year. In Cape Town, she hired a car. Afterwards we thought she must have been briefly disorientated by driving on the left as she turned right, directly into the path of speeding traffic. Fern was killed instantly and later, in accordance with the wishes of her family, I picked up her belongings from the American consulate. It was a very sad time and I kept her clothes close. Then I became sick and I never got better.
It was three years before we found out that her luggage contained more than clothes. Because Lymes and malaria are very similar and malaria was what was expected from life at the top of the world’s largest waterfall.
Imagine one tiny tick, on a magnificent trip right across the mighty Atlantic. Thousands of miles…. to find me.
I can’t help reframing it from the perspective of the brothers Grimm or the folks at Pixar. But I should be less eccentric and fanciful. The bloody business was at least worthy of the Russians. Except of course in that it ended up significantly longer and much more tragic.
And because it took so long to diagnose my strange problem correctly the Lymes had a lovely time colonising all my farflung territories. When the right test was finally ordered three years later I could barely walk and had reached a point where I was practically praying that it was only a brain tumour or maybe a full blown nervous breakdown.
I cried with ignorant happiness at this wonderous word: LYMES.
I didn’t know it was a disease some people believed did not exist in a disseminated form. From the vantage point of my wheelchair shit felt pretty darn real. So, I was plenty naive. Enough to think that the only missing link in my story was the villain. Now that we had named the miscreant the fight could commence in earnest and the battle would surely be won. Because, I knew clever people and I was surrounded by love and I could be brave (for a while surely? I had delivered three children without pain relief ffs!). Because now that we had all the pieces of the puzzle it would only take a while.
And I was right.
The clever people I knew did research and literally brought me back from near death one more time than the Borreliosis. The monster was indeed slayed.
It only took nine years (pretty much the average time for conquering Dostoesvsky no?) It was time to get back to my life. To run. And swim. And walk. And travel. And laugh with my three brave babies. And stay up late… and drink coffee and red wine… and… and… and
…but something was wrong with my sweet little fairytale. The princess’s hair was falling out and she could not get out of her bed. There were whispers at court. Was winter coming?
Different country same endless list of doctor’s appointments and tests.
Only, this time around I was also cured of my naiveté and very, very aware of the hierarchy of disease. There was Siddhartha Mukherjee’s Emperor, complete with public appeals and universal recognition, understanding and funding… then the many courtiers; slightly less empathy maybe but eyes still lighting up with general knowledge and so un, until, finally we have our modern day leprosies; mere ‘syndromes’ that are badly understood and secretly or openly derided. These ‘so-called’ diseases that were practically openly considered a drain on society’s resources.They tested our economy, the medical establishment, cultural norms, hell people’s bloody patience ffs!
So, I really just wanted to have an illness that would either kill me or have a well documented treatment regime.
«When the Gods want to punish us they answer our prayers» Oscar Wilde
But the gods clearly thought I had suffered enough and my beseeching fell on deaf ears. The diagnosis, when it came, was Post Viral Fatigue Syndrome. Myalgic Encephalomyelitis.
Yuppie Flu.
Eh.
Unfortunately, I also chose that moment to look on the bright side and remember the last time I had been given a chronic prognosis. I had fought and slayed that dragon so my second thought was «Hey! No worries. I’ll figure this out.»
Six years and at least two magic cures later I am still sick.
I struggle to get out of bed. To wash my hair. To walk my dog. To dress. To get through a day without strong pain medication. To have a conversation with a friend. Some days I cannot tolerate any light. My sheets are soaked in sweat. There are a thousand other delightful little humiliations and disappointments waiting to be discovered around the corners of my day… springing out, hoping to catch me unawares (because who doesn’t love a surprise?)
And, like a woollen blanket, lying soaking wet over all of my day, everywhere I go, there is always, always fatigue. Dripping, uncomfortably cold and scratchy. I say fatigue like it is an english word usefully invented to describe this feeling. I lie. I use it because there is no english word to describe a moth under the soaked blanket trying to move. The moth’s scales rubbed off. Resistance is futile.
I have been accused of being irritatingly positive. I am. It is like a tic I can’t control. If I have made you suffer… if I have pointed out the happy side to whatever crap landed on your cake along the way, now is the time to hit me upside the head with some happy payback plattitudes. Because I have the distinct impression, in this moment of stepping away from the bridge… letting go of the helm. That the time has finally come for me to stop searching for a cure that doesn't exist and start searching for a life…
A life spent controlling my symptoms. And my saltiness: After all. It’s going to be mostly figuring out how to work the ever aging hardware with some really buggy new release operating system… like being stuck inside Windows 8 for ever.
Does my situation make you feel lucky about yours yet? Do I make you see your own life through a tint of rose? I bloody hope so!
Will I find a way to repurpose my broken self? In a world that doesn’t speak the language of my complete asthenia or appreciate the complex dance choreographed between my abilities and my disabilities.
Will I change the language constantly circling around me like planes in permanent hold?
«You look really well.»
«Have you overdone it again?»
«Now please rest.»
If only I wasn’t so tired I could…
. image via chris joel campbell
