29 May 2019


Definition of antibody: any of a large number of proteins of high molecular weight that are produced normally by specialized B cells inside an individual's body after stimulation by an outside antigen and that act specifically against this antigen in an immune response to the benefit of the individual
Definition of autoantibodyan antibody active against a tissue constituent of the individual producing it

Every so often I am encouraged to  fight or at least make peace with this autoimmune disease. Best intentions etc. I am not complaining and I've long stopped responding. Generally, people mean well.

One of the perks of working in a medical research facility is that from time to time I get to watch the experts when they check my blood samples. Most of the routine parameters are done by machines, a long line of humming equipment, robots, but the tricky ones, like autoantibodies, have to be assessed in person by at least two people. It's a complicated process of sample dilution and electronic microscopy and control tests and seriously, I haven't the slightest idea how it actually works.

First the shock of realising that these light and dark green blobs displayed on a large monitor in a darkened room are actually incredibly minute parts of my white blood cells and that the two people in the room with me can determine my state of health - at least one aspect of it - by looking at them. 
Then the realisation that this is neither an alchemist's workshop nor a witch's coven. Nobody is whispering spells. Instead, careful observation, comparison, determination, measurement. But my blood, nevertheless.
It can be almost uplifting to watch, to follow the cursor outlining edges and highlights. My blood. And yet, I am still at a loss.  Where others see proof, I see green blobs. (BTW, this image is not of my actual blood, it's a training picture.)

I had a hard time with some of the childhood illnesses. To some of the experts this is yet another indication of something or other connected with an autoimmune predisposition. Not that it helps.

When I was eight years old, I caught a triple whammy (mumps, chicken pox and croup) and - so the story goes - was ill for weeks. When it was suggested that I should be in hospital, my mother did her not-over-my-dead-body act and as a result, an elderly doctor, a friend of the family, would come every evening with his elderly wife to administer an injection of penicillin. The elderly wife was meant to calm me with story telling and singing of songs. To this day I have a vivid image in my mind of me kicking and screaming with a hoarse voice while several arms are holding me down.
I recovered. Walking was hard at first. I was a skinny rat and needed a strong hand to hold on to for a short while. This of course has long become part of my family's folklore, at times used to highlight my weakness, other times, my strength and above all, my mother's despair and dedication.

When I was 16, I got the measles. It was quite embarrassing when my boyfriend-at-the-time looked at my face and said, yuk. That was on the evening of a trip to Berlin. I had won this trip in an essay competition. At the time, every teenager worth their wild dreams wanted to go to Berlin and mix with the anti-establishment crowd. But trips to Berlin were complicated in the cold war years of the 1970s. Berlin was a fortified, divided city under the administration of the four allied forces who won WWII. Getting there involved permits and lots of regulations from vaccines to hard currency and most importantly, a neat appearance both in real life and on the passport picture, then a slow bus journey on one of the transit corridors cutting through East Germany and long hours of border checks.

It was deemed important for all Germans to somehow be connected to Berlin and the authorities, German and allied, came up with all sorts of ideas to entice the right people to visit and defy the image of West Berlin being a beleagered slice of a city surrounded by an iron curtain.
In my family, it was a difficult and emotional subject because, while she had family and history in Berlin, my mother could not get a permit to travel. This had to do with the infamous Lastenausgleich, a post WWII programme intended to recompense for material losses, e.g. my mother's childhood home in East Berlin, but opening badly healed scars and considered fraught and unfair by many incl. my mother. Long story.
Winning this essay contest was a bit of balm on my mother's wounded soul. So to speak. And I messed it up. As usual.

The boyfriend-at-the-time had come to see me off to Berlin, somewhat jealous, and in view of my glaringly obvious unfit state he quickly spread the news that not even a prize winning essay could save me from looking like a rotting pumpkin.
So, the measles, followed immediately by pneumonia, kidney inflammation and gastritis. My mother moved me into my parent's bedroom and the entire family suffered from lack of sleep for the weeks it took me to recover. Also, I missed two exams but the glorious essay saved me from having to resit. I don't remember what the essay was about - nothing momentous - and the boyfriend fell by the wayside.

My point: I did fight. Then. These were battles I knew I could win provided I worked hard. On every level, even the cellular.

This one, no. I haven't a hope.
As for making peace, why? With whom, with what?

Instead, here I am, exhausted, searching for comfort looking out from the patio doors across the garden, peonies, roses, iris, a freshly cut lawn, all glorious in the sunshine. 
I take a deep disciplinary breath and get on with it.

13 comments:

  1. I absolutely hate it when people talk about "battling" a disease- usually cancer. And I don't know about where you live but here in the states obituaries often say, "After a long battle with..." which absolutely implies that the person who is now dead lost that battle with a disease. It also implies a weakness somehow. "Oh- if he'd only fought harder."
    How ridiculous! Our bodies are not battlegrounds.
    This is just a pet peeve of mine. But it's a strong one.
    Sounds to me as if researchers might want to study your history to see if there is any connection between the severe illnesses you had as a child, in clusters, to, as you said- a predisposition of the autoimmune system. I don't pretend to understand the least bit of it.
    But yeah- how do you make peace? How would that even work?
    I think that people who have no idea what they're talking about should keep their mouths shut. I am one of those people.

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  2. you don't make peace with what is killing you or making your life a continuous struggle. you tolerate it but only because you have no choice. I wonder if your latent autoimmune disease was responsible for getting sick in clusters or the other way around. no one knows probably and what difference would it make if they did. none. so I'm guessing you didn't get to go to Berlin after all.

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  3. I deeply admire the way in which you write your history, your story and your memory -- how you weave the personal and the objective together to create something really, really powerful. Have you ever read Sarah Manguso's book "Two Kinds of Decay?" It's a remarkable memoir of her own struggles with autoimmune disease. She is a friend of mine -- I believe she would admire your writing.

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  4. These meditations of yours, especially this one with the dear photo of you as a small child, speak plainly and clearly of the difficult truths you face and have faced all of your life as well as the beauty you seek and find in the natural world. Always sending love.

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  5. "the shock... that these light and dark green blobs... are actually incredibly minute parts of my white blood cells."

    It's a moment of patient's envy, isn't it? In slightly different circumstances that medics get to see parts of me I may never see. As if the privilege of owning a body had somehow been temporarily removed. For me it started when my doctor peered into my ear with an illuminated magnifying device. Later, rather more eerily, when a callow youngish doc explored my throat and other tubing way beyond with his endoscope, meanwhile chatting to a colleague about some utterly mundane other subject. Later I received a three- or four-word letter to say that all was OK. Not the faintest reference to what he'd seen during his tour of my inner landscape. Come on doc! That was worth a Shakespearean sonnet at the very least.

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  6. This reminds me a little of the AIDS activists in the '80s and '90s insisting that they were "living with AIDS," not dying from it or a victim of it or anything like that. Life is life, even when encumbered, right? It's interesting to think there may be some link between your childhood immune responses and what you're experiencing now.

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  7. Like Steve, I am wondering about a possible "link between your childhood immune responses and what you're experiencing now." It is all so complicated. Sometimes the hardest fight is the one where we struggle to learn to live with what we can't overcome.

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  8. Thanks for writing so beautifully of your lifetime of having different illnesses, culminating in this autoimmune condition. You've got a good grasp of the situation, and maybe not an answer, but at least the urge to find one for yourself. I appreciate your search, that whatever your body is up to, you want soul-peace. May you find it. The inner being of yourself is surviving all of this, and has so much strength as a result of it. I trust you will touch that part of yourself and find peace.

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  9. I have often wondered if one of my childhood illnesses wrecked my body. Your description of childhood fever and being sick for weeks sounds reminds me of two particular times of my life when I was seriously ill. One time I had to be kept away from the rest of my family for SIX WEEKS in a downstairs bedroom, alone. Our bodies are like walking petri dish experiments, some combinations last a lifetime. We are more than our bodies. Hearts and minds and love persist.

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  10. The last line of this evocative post is everything.

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  11. I am always in awe of people with chronic illnesses. I suppose depression qualifies but I mean illnesses which affect the body. People keep going because the alternative, to lay down and stop moving doesn't hold much appeal.

    Your description of your childhood illnesses makes me wonder how long your immune system has been out of whack. Or maybe it's just cumulative effects. Who knows?

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  12. I am thankful you are alive. When we look at the history of boneheaded treatments from bygone centuries to that beautiful and mysterious photo in your post, I marvel at what we have learned. And at the same time, we know so little!!!

    I am also thankful you write here with candor, humor and wisdom. It connects us, like Indra's Web, to all our collective joys and sorrows.

    Deep bow.

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  13. The body is so complex, the mind even more of a mystery. I'm not so sure making Peace with disease or fighting is necessarily Helpful... perhaps it could be, perhaps not? I do believe our body naturally wants to Heal and so I try to cooperate with assisting mine as best I can to Heal from the disease ravaging it.

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