15 June 2014

Once again I sit opposite another medical expert answering questions and when he reads through my stack of copied lab reports and medical records, I look out through the window behind him, it is such a beautiful morning. Ninety minutes of tests later he turns the monitor my way to show me the colourful diagram of where and how my left inner ear is permanently damaged, a pie chart of my poorly responding balance organs, graphs of erratic zig zagging lines depicting my impaired response to stimuli and - thankfully - my near perfect hearing.
All this is nothing new and I smile while he explains that in his opinion (and I have been told that he should know) this latest scenario is all autoimmune related. Old hat, I want to tell him but instead listen politely to his lecture about micro vessels and autoantibody attacks.

And because the day is so beautiful I take a detour on the way home, crossing the river by  ferry. There is just enough time to step out of the car and take in the view of the lush forests on the hills and the castles in the sunlight. The Italian tourists from the car behind me ask for names and directions and I recommend a place for lunch downriver. Look at me, I am just another healthy woman enjoying the day. And, oh, what a day to be alive.

As I drive off the ferry and up to the traffic lights, the first niggling doubts start somewhere in the back of my head or maybe in the pit of my stomach. It is always hard to tell. What does he mean, in his opinion? Isn't this a bit vague? Was he evasive? I desperately want hard facts, something I can carry like a badge, feel like a hard stone in my pocket. Somewhere to stab my finger, place my palm. This here, this part of my body, this is where my white blood cells are being attacked. Let me circle it with permanent ink. See this spot here, this is where it is all going wrong. 

But it's complicated and of course I know that, I have been tangled up in these thoughts too often and by the time I get home my breathing has calmed down and once again, I look and act just like the next best healthy woman over 55.

And yet, there are times when I want nothing more urgently than to be told what went wrong, what I did wrong because surely once I know things will fall into place.
Remember that hot day when I stepped onto the sharp piece of glass on the lawn at the back of that dingy hotel? And R forever telling me to put on shoes? The slightly grimy towel when I washed off the blood? The pain slowly increasing over the next couple of days, along the foot moving up towards the knee? The shivers, the red hot circle, septicaemia, penicillin? I can come up with two of the current scientific theories of what triggers an autoimmune disease, the bacteria on the dirty towel and the penicillin - or both or none of it, take your pick. It's all opinions.
The evidence is insufficient, the statistics have not yielded significant results, I know my stuff when it comes to medical reporting. 

Which is why you better get a grip, you foolish woman.

In our lives, there is nothing, absolutely nothing we can take for granted. Ok, there is death. But apart from that, there are no entitlements, life is not fair, whatever that means. If I have figured out anything, there are good days and bad days and if you are like me, you go from one to the other, up and down, like a yo-yo.

heavenly music


  1. One of my daughters has pretty severe auto-immune disorders and she is only 26. I go back in my mind, over and over, trying to figure out what I did wrong to set all of this in motion. Was it that round of amoxycilin I did when I was pregnant with her? It could have been. I do not know.
    It's fruitless and it's human.
    How I wish we could figure this out.

  2. That is heavenly music.

    Yes. That is so true. Up and down. Saved by beauty every time.

  3. Oh yes, we can never know what's coming tomorrow - nor why. But sometimes it's hard to escape from the circular why why why? I hope there are plenty of restorative days to balance the doctor's "science".

  4. I empathize with both your understandable deep frustration with the unknowns and the "whys" -- as well as with your imperative: take nothing for granted.

  5. In the 1970s I listened to the Koln Concert so often that my neighbors thought I played the piano. I love this music so much. Thank you for reminding me.

    I hope you find answers to your auto-immune questions. I too have had auto-immune flare ups (two bouts of lichens plans and one alopecia areata). I haven't experienced anything that was chronic, but I deeply sympathize with your situation.