This morning, I read a writer who found autoimmune disease or it found her, the war that never ends.
The immune system fights the body’s battles until one day it no longer knows who the enemy is so everything becomes the enemy.
It’s difficult not to appreciate that sentiment. Some battles rage so long everyone forgets how the fight started, never mind who is (was) righteous.
On days like today, I’m convinced my immune system has always known who the enemy is—itself—and has been engaged in a decades-long struggle to override autocorrect.
We all know how well that works, sporadically.
It was Emma Smith-Stevens’ essay, “I Used to Be a Writer and Then I Got Sick” that had me thanking the gods, the Universe, the #DailyDose, my in-breath—whoever or whatever was responsible—for sending me the words of another woman whose body is at war.
Sounds selfish because it is. I’m always looking for another perspective, another way to override my response. I suspect she looks, too.
There are decades of differences between us as writers, as women. It hurts my heart that in her young adult years she already knows “I am illness more than writer because despite my daily efforts, I can write of nothing else.”
I know, I know.
By now, I should know about ”soldiering on”–and I do–but like Emma I found a life-changing gift in being present to illness, an awareness that escaped me for most of my life.
Then, I ascribed to the ”maintenance phase” as a way of keeping the war even but the war has never been even. Each day, it is a different battle with new lines.
Good for you, Emma, for knowing this–now. It has not taken you a lifetime.
”Brokenness gives birth to transformation” and much less frequently, to wisdom (John Mark Green). It is in the breaking that broadens the life lens, sometimes shattering the old for new.
Nothing is so solid as the groundless present. Nowhere else is the extraordinary.
Aim for Even posts offer equanimity a dose at a time. No day or dose is ever the same, even if the aim is. You may read about the origins of Aim for Even here or on this site’s About page.
Aim For Even: The Daily Dose 
Wise words, Karen! One of the greater challenges, I think, remains finding the cause of auto-immune dysfunction; too often doctors assign labels that describe symptoms only – with different labels for different expressions of the one phenomenon: issues in the immune system. Or they write the patient off as being ‘psychologically wrong’, send them away still suffering, and then blame the patient again for somehow feeling a bit depressed afterwards. On my own experience of specialists and auto-immune issues, the usual priority specialists have is their own need to be told they are right; they validate themselves by their ability to diagnose, and intellectually bully those who challenge it. I remain confident that answers can be found, properly founded in science; but it will require an inclusive approach and a properly broad synthesis of understanding – something that ‘specialism’, by its very nature, usually excludes. It’s something I am actively looking into, admittedly for slightly selfish reasons; although the main lesson to date has been that research doesn’t provide sufficient data – again, due to the nature of the way research is conducted, with its often specific polar focus on single aspects of the immune system which – naturally – is completely integrated with body and mind, just like everything else about the human condition. It’s way harder to understand than Einstein, I might add – partly, I think, because of insufficiency of data and the largely faulty analytical paradigm currently applied to it. But even if the immune system were fully understood scientifically, it’d still be complex because of the multitude of factors within it.
LikeLiked by 1 person
What do you describe is my life for the last 40 years, Matthew. I have a list of labels but have thrown all away in favor of autoimmune disease. Depending on the specialist of the moment, I trot out the preferred label because it’s just easier. I agree, it’s about being right, and that is never the patient. You may remember that I walked away from traditional medicine for five years for all of the reasons you mention and others. If it had not been for a pinched spinal cord, I doubt I would have returned but when my body began breaking down structurally, I could no longer control most of my symptoms with diet and lifestyle. That said, those very specialists–my current group, anyway–show distinct appreciation for my diet and lifestyle. Yet, and I am no fool–anymore–I make sure I am far from singing any praises for alternative care. It just gets me another label, probably delusional. 😉
Like you, I do not understand why it is not a given that the “immune system is completely integrated with body and mind like everything else”–just as you say–you made me chuckle with “it’s way harder to understand than Einstein.” I agree, and I have a general science background–albeit a sketchy one. Your discussion/analysis of research and the profession at large is what most patients feel, in my experience.
Generally, I have come to believe that once the gene “switch is flipped” there is not a way to turn it off, again. I think there are times that a combination of medicine, diet, and lifestyle seems to do that–remission–and then the balance is lost, sometimes because of physical or emotional stress but it’s lost nonetheless. It is my experience that specific balance will not be regained. I may find balance again or get close but never do I regain health. Of course now, four decades later, I aim for even.;-) Much, much appreciated, Matthew.
LikeLiked by 1 person
your strength and lucidity is inspiring!
LikeLiked by 1 person
Always, you are so kind, Craig.
LikeLike
Do you believe the language of war is useful? When at war with oneself, can the equanimity ever be found?
LikeLiked by 1 person
I struggle with this question all the time. I think of the bodhisattva–warrior–whose greatest “weapon” is compassion, at least as I understand it. I suppose there is energy in the idea of fight–maybe that’s why I sometimes use the imagery but as you say, where is the war in equanimity? This question is so appropriate for me in this moment. I would like to know what you think about your question, if you care to share.
LikeLike
Thanks for the thoughtful reply!
Whatever you find is helpful for you, I would not wish to devalue.
I have found the greatest struggle, challenge, and also the greatest benefit, from the “all acceptance is the key to the gateless gate”.
Not in the sense of not enquiring as to the benefit of various treatment options, which I frequently do, (and even getting cross and upset at times when doctors are contradicting each other and making a nuisance of themselves) as well as making my own information searches, however at every point in my experience, I attempt (not always managing this if too tired/stressed) to look at why I am feeling the distress/pain where is it coming from, what can I learn from it, if I can help to alleviate it or not. I don’t know why, but I have as long as I can remember had some aversion to that talk of “fighting” the condition. Some people obviously get a lot of support from that way of thinking, and if it works for them, then thats the way it is!
LikeLiked by 1 person
Actually, we are in agreement for I find no fear in pain, meaning I “sit” with my emotions. My love of metaphor will take me to “fight “imagery but I find all of it fascinating, even in the most difficult moments. It is as you say, a matter of learning from it. I do not see it as a battle other than in metaphor, of which I have a great love. Thank you, again, for your thoughtfulness.
LikeLiked by 1 person