My Mind-Body (dis)connect, Part I

I've been thinking about this post for a while now, but it keeps getting pushed off by funny anecdotes from the publishing world or the more acute weirdnesses, which, incidentally, was about to put it off again. I was nearly knocked down by the second worst cramps in the past year or so. I walked the 40 minutes home from work because I couldn't imagine sitting on a train or a bus, but it was 85 degrees and I mentioned before that when the endometriosis attacks, it radiates down to my legs and it was a wobbly, dizzy walk.

But I've spent time here in this shiny little blog talking about my pain and trying to explain it, because I'm thinking it's not fair of me to be frustrated with how misunderstood my disease is if I can't put it out there in plain English. I can't make anyone feel how I feel, but "pain" is so vague and my favorite phrase - "my everything hurts!" - I usually say with a false, self-mocking whine, because while I am trying to be honest about how I feel, when people take me seriously I am very uncomfortable.

Why on earth should it feel like a lie? When I go to the doctor they ask me if I'm in any pain. I almost always say no. It's not true, of course, but I guess I mean that there's no pain I can expect them to fix. Or, perhaps, there's no pain bad enough that I'm willing to put time and energy into fixing it.


I've been to a couple of therapists, one at home my senior year of high school and then briefly at school. The therapists addressed my high school inability to hold onto healthy relationships. Both therapists were diagnosis-happy: they looooved to tell me what disorders I had and why, but (and perhaps this is a product of my being unreceptive) I felt they gave me no suggestions as to how to fix it. Their favorite is my little quirk of smelling and tasting Cytoxan years after my last treatment. They were so excited. They were all going into flashback-mode, giving me trauma disorders.

I found out later that a lot of lupus and cancer patients find that they can't get rid of the smell, that it will sneak up on them. I actually think what sets it of is a combination of sweat and alcohol smell, tinged with something else...urine or vomit, perhaps (yeah you're all running for the hills at this point). It's a smell combination that I'm extremely sensative to, and on weekends at college I hit on it more often that I'd like. I convert that smell somehow into Cytoxan and proceed to feel nauseous for a good 20-30 minutes.

That doesn't interest me, because that is a clear mind-body connect. 22 Cytoxan treatments when I was at a very maleable age (11ish) - it seems natural that I would be prone to this "flashback." I mention often the taste of the stuff, because the first time I had the treatment, my nurse gave me the last dose to take orally by squirting it into the back of my throat, and the second it touched my tongue my whole body rebelled and vomited, though I'd swallowed none of it. That taste works its way into my mouth any time I feel ill, and any time I think about it.

It's been suggested that the actual taste is the sour taste of adrenaline due to my intense fear of vomiting or the fact that I still have remnants of my young self's anxiety when I talk about these things.

These are still very closely connected, the mind and body, and all of this makes sense. Too much sense. It's almost boring.

What causes problems for me is the knowledge that I have had lupus for pretty much as long as I can remember. I mean, sure, I have memories from pre-age-9 (actually, I have a pretty long memory, my first being from when I was a little over 2 years old, a traumatic experience with a talking parrot). But we are not really people that young and we change so much between the ages of 9 and 20 that I HAVE to accept that being diagnosed must have in some ways defined who I am now. Now, keep in mind that i refused to tell people about my disease until I was 17. Does that sound like I was the type of person who was at all willing to be defined by it? No. I fought that so hard that, I think, it backfired a bit. The only astute thing my first therapist ever said to me was "You're doing okay now, I think, but you're falling a little and eventually you're going to hit the ground, and it's going to hurt." (This she said, perhaps talking out her ass, while I was quitting her. But whether she was blowing smoke or not, I guess she was kind of right.)

I do not want to let this post get too long so we'll call this the Setting the Stage post. The truth is that since Rituxan, which I went on at 14, the pain itself is no longer really my issue, except in the sense that it seems to constatly poke and prod just to remind me that I am just a little bit separate. (Or just to remind me that I have separated myself just a little.) I'm only 20, and I don't pretend to have any idea what I'm talking about, but next time I come back to this, I want to continue the (thrilling!) exploration of what it feels like, mentally, to grow up with a chronic illness.