Me at 32

I found a blast from the past today that I thought I’d share.  It’s a letter to my then partner, my “boyfriend” always seemed like the wrong word since we lived together, shared expenses, household and life responsibilities, and planned (I had thought) a future together.  Our future, it turns out, was predicated on my not being ill.  I had surgery for endometriosis in March of 2002, about a year and a half into our relationship.  We were already living together then, although informally….i.e., he had moved into my place.  In May, we decided to move in together.  In June, we moved.  The weekend we moved, I caught Lyme Disease.  I have not been healthy since.  See my “about me” post for more details on the diagnosis, progression, and treatment.

My boyfriend, see I’ve decided just now that he should be properly called a boyfriend with emphasis on BOY, had been raised in a family that believed that illness was largely a state of mind.  They had persisted in this impression throughout my boyfriend’s mother’s treatment for breast cancer, something that had taken a toll on the family and on the mom.  She was in remission, but on a lot of psych meds and drinking heavily.  Actually, they all drank heavily, but believed that it was FUN drinking and contrived fun situations – I swear – to provide opportunities to indulge their family drinking problem.  But the substance use was worse for the people in the family who had been touched by serious illness.  E.g., ex-bf had overcome a prescription drug addiction (he was a type 1 diabetic, also not ok in this family) and mom, well, let’s just say I once found mom passed out in the bathroom where the rest of the family was happy to leave her rather than even remotely acknowledge that she was not ok and that this drinking was not FUN drinking.

Me, I’m an abuse survivor.  When I make reference in this letter to tough times in the past, I am referring largely to that.  My life was never easy, but in 2003 it was becoming hard in a way that I had not had to deal with before and in a way that a large number of people (thankfully) don’t need to deal with until they are rather elderly and facing the fact that more often than not and with increasing frequency their health – which I believe can be functionally defined not just in physical terms but in terms of the blind faith that this foot goes this way now, that organ X chugs along quietly and efficiently, that A, B, and C can be done routinely and without any extra thought or planning or “accommodation” – is not going to be there when they need it.

So there’s your context.  Read on.  I think it’s elucidating to see the snapshot of how it feels to be coming to grips with what seems to be not just a chronic illness but a chronic mystery illness.  The solitude you can feel even in your most intimate relationships, the crushing disappointment, the self blame, anger, and uncertainty.

btw, I do not think I ever gave him this letter.  I do things like this to organize my thoughts and it is rare that I would not address matters like this face to face in a discussion.

December 14, 2003

I don’t know where to start.  It’s not like I didn’t know life could be hard.  I thought it always had been difficult, but I had resources then that I don’t have now.  Primarily, I had a trust that I had a future, however good or bad or difficult circumstances would be.  I trusted that I would have a choice about summoning the strength I needed to meet these difficulties.  If I chose not to, then it would fall down around me but it had before and I had picked it up when I was able to.  Now I have no trust that I have a choice, or that if I choose wrong I will have the strength to recover myself.  I can’t be strong now and I have no sense that I can rely on strength in the future.  This is so horribly crippling.

Every time I think I am recovering my strength, I am faced with some reminder of how weak I am right now.  It is devastating for my abilities to handle difficulties.  The best word for this is despair.  It is what I wake up feeling and what I go to bed feeling.  Every headache, every pain in my ankles, every time my hands swell, every time I have to stop in the middle of a meal and lie down because I feel too weak to sit up, I try not to let it overwhelm me.  I try all the tricks I had learned before in past difficult times, but they don’t work because I haven’t got the trust that this will pass.  These reminders keep telling me that it won’t.

I try to tell myself there is a trend towards getting better.  I try to tell myself that my negative attitude is what is holding me back.  But the disappointment I feel when I backslide even after or in the middle of feeling positive is so intense that I sometimes give in to the temptation to hold back.

I can’t imagine what this looks like to you.  I can only witness what your reaction is.  You see me as angry now, as mad at you when I am inconsolably irritable.  That is what I see.  I don’t know how you feel about it.  I suspect it is bad.  And I have already started mourning for having lost a wonderful relationship because of this.  I feel like it is my fault, although I know that this is just another casualty of the illness, of the rotten physical circumstances I have fallen into.  But it is hard not to feel like I should be able to do something about it.  I am so used to being able to do something about it.  I am angry, but it is mostly at myself, and even that is misplaced.  I get mad at the doctors, but then I see you championing them, and then I get angry at you because you are defending the people who I feel I can at least be justifiably quite upset with.  If I can’t be mad at them, blame them somewhat for prolonging and exacerbating my distress, then it feels like it stands to reason that it must be my fault, in your eyes.  It is strange logic, but given how I’ve been left with approaching the whole issue, if you remove them as a justified target of my anger, that leaves only myself.

I can’t imagine a future with you and I can’t imagine one without you.  I have always been able to see at least two paths for me in any situation, and now I have none.  It has been a consolation for me in the past, my strength is generally a well conceived hallucination based on the idea of possibilities, potential.  There is none now that is even plausibly certain.  There is none that comes without the fear of intense physical difficulty and even total failure.  I imagine myself homeless sometimes, I worry about who would care for me, about what would happen to my cat.  I worry that I won’t finish grad school and will have to take a job that has stricter time requirements and when I think of that scenario, I am completely filled with dread because I have no real sense that I could perform at a level that would be necessary to hold even a good job, let alone one that pays barely over minimum wage.  I worry that I will struggle through grad school and find myself unemployable anyhow.  I worry that I will follow you blindly to someplace far away and still have these horrible choices in front of me, transplanting the crisis to another time and place instead of living it now.

At one point this Fall when I was feeling better, I thought of asking you to marry me.  I immediately began to feel apprehensive, not only at the thoughts of marriage after a failed one, but at the thoughts of hitching you to a dead end.  And you are sweet enough and still hopeful enough that you might actually go through with it.  I can’t do that to you.

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1 Comment

  1. I so hate having a cold, I feel like just dying and being done with it. But you – you have a real condition – I think you must have a whole heap of courage!

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