I was speaking to a friend on the phone a couple of days ago. She also has physical issues that require pain medication, and every two or three weeks or so, she’ll swallow a handful of pills, drink a lot of alcohol, pass out and scare the crap out of her family, and then spend the next few days full of remorse and self-flagellation. Months ago, I’d suggested she might benefit from some sort of rehab program, but she responded that she’d done that three times and it never took, so I let it be. I do know she goes to meetings, NA or possibly AA, a few times a week, although that hasn’t appeared to “take,” either.

A few days ago, she had another episode, where she’d gone through half a bottle of pills and countless shots of vodka and woken up the next morning feeling like hell; she called me up the following day, as desperate and remorseful as always. “I screwed up again,” she said sheepishly, as she has, about every two or three weeks, for as long as I have known her.

I’d been holding my tongue about what I thought about her issues. I figured I wasn’t her doctor or her shrink and if she wanted to flirt with a trip to the ER every few weeks, it was none of my business. Chemical problems notwithstanding, she has been a good support for me through all that’s happened, and I felt that she needed me in some odd way, and it felt nice to be needed.

But something about the whole situation had been nagging at me lately and I hadn’t been able to put it into words. Until that last phone call, when I found myself saying, “Actually, I don’t think you want to stop abusing those pills. I think you’re afraid of having to be accountable for your mistakes. I think you like being able to blame your screw-ups on your pill addiction. I don’t think you really want to change.


She hung up on me a few seconds later.

I don’t feel bad that I said it. She probably didn’t hear it the way it was intended, but even so, I’d already gotten too rolled up into her pattern of abuse and remorse and I didn’t want my lack of commentary thereof to be interpreted as tacit approval.  So it’s probably a good thing that I pulled the plug.  Maybe it will help her. Doubtful, all things considered, but it’s out of my hands. Besides, I have my own crap to worry about.

But since then, the last words I said to her keep echoing in my head.  I don’t think you really want to change. I realized I could have been – should have been – saying them to myself. I don’t have a pill problem, but when it comes to adjusting my life to accommodate for my injury, I don’t really want to change. I don’t want to become a new person, a physically weak person, a disabled person.

I went to a rheumatologist this past week to see if there was a medical or biochemical explanation for my injury history and lifelong exercise intolerance. He thinks that my profile fits the description of a form of a metabolic myopathy (muscle injury due to an inability for my body to clear the lactic acid produced when muscles are stressed). I got a baseline blood panel, and I’m to go back in two weeks and do another panel, this one 48 hours after a muscle stress exercise.

I’m not sure how I feel about the proposed diagnosis. I sought him out because I wanted an explanation for why I wasn’t capable of physically keeping up with my peers, but I didn’t actually expect to get one. I had been secretly hoping he would suggest a particular trainer or exercise specialist who could tell me what I was doing wrong, and tell me how I could change it to I could improve my performance.

However, performance improvements are not on the table. Whether or not there’s a metabolic reason for my situation, the doctor was careful to point out, more than once, that there is no remedy for it. No matter what I do, if I work my muscles past a certain point, I will have to endure several days of pain. If I exercise or otherwise stress myself physically for too long, I will be forced to deal with weeks of fatigue. These reactions are likely to worsen as I age. As in, this is my new reality.  I’m stuck this way.  Forever.

But even so, I don’t really want to change.

I don’t know why not. It’s not like it’s been fun, having this little finger-wagging PE teacher in my head, admonishing me for not pushing myself hard enough all these years. I remember from back in school a particular torture called the yearly physical fitness test. Given in PE class early in the year to grades four through ten, each student had to perform a certain number of crunches and pull-ups, demonstrate a certain level of flexibility, and run a mile in a certain length of time.

I could manage the crunches and pull-ups with relative ease, and I had no trouble with flexibility. But I could never run the whole mile; doing it in less than the prescribed time was not even an option. I was always – always – the last one to finish. The class would have to wait for me as I dragged myself through the last lap or two at a slow walk, barely able to put one foot in front of the other.

Not a single PE teacher ever pulled my mom aside to discuss the mismatch between my physical health and my inability to run a mile. I was the only kid in class without an obvious mitigating factor, such as asthma or scoliosis, who was unable to complete it, but it was never suggested that there might be something wrong with me.  The fault was always mine for not trying hard enough, an attitude that I self-perpetuated long after PE classes had faded from my rearview mirror.

I was lazy, someone who should have been able to do it but just didn’t feel like pushing herself. One teacher accused me of not taking it seriously. This seems especially cruel in retrospect, considering that I took it more seriously than just about every other student. The consensus view among my classmates was that the whole thing was a joke, a waste of time that could have been better spent playing dodge ball.

But I would spend days getting psyched up.  I’d practice running in the yard or cul-de-sac. In middle school, I even took up jogging for a short time, getting up before school to practice going up and down my street.  Each year I was hopeful that maybe, finally, this year, bigger and stronger than last year, I’d be able to run that damn mile. It wasn’t until the tenth grade, the last year it was required, that I finally threw in the towel and walked the whole thing.  There didn’t seem to be any point in bothering trying to do otherwise; might as well [ostensibly] do it on purpose.

Now I may have an actual diagnosis upon which to hang this lifetime of physical insufficiency.  I’m not sorry I wasn’t correctly diagnosed back then, though.  I would have hated to have been barred from doing things I enjoyed like swim team and theatre camp.  And undoubtedly, I would have been accused by my peers of “faking” it just to get out of certain gym requirements. You don’t look handicapped to me.  Where’s your wheelchair?  Hey, teacher, I’m tired, too, can I sit on the bench with her?  By high school, I would have been begging my parents not to tell anyone, asserting that I’d rather just fend for myself.

What I am angry about is that there is no longer any alternate outcome. I am going to be disabled, either metabolically or physically, for the rest of my life. I have to decide whether I’m going to change and accept, or fight for my old self-concept and be miserable. Up until now, it’s pretty much been the latter. I don’t really want to change. I would rather maintain the fiction that the clipping of my wings is temporary, a minor setback, a little hiccup in an otherwise full and active life. I have not been able to bring myself to face the truth full-on, which is that whatever flying I get back to will have to be moderated, and that certain heights are never to be mine.

I’m resentful about that verdict, and even more so now that all hope of an appeal has been quashed. The relief I feel at having laziness expunged from the record is not enough to outweigh my chagrin at being sentenced to life with impairment. I have absolutely no idea what my self-concept should be in this new reality. I’ve just been a tourist here all these months, staying in hotels, living out of a suitcase, unwilling to go house-hunting or check out employment opportunities.

I know that as long as I persist in duct-taping my old self-concept to the chair, there’s nowhere for a new one to sit. But as much as the uncertainty about what the new one will be frightens me, that pales in comparison to my fear about the transitional period where there won’t be anything in that chair at all. How do I keep the wrong thing from sitting there? How will I know what the right thing is when it comes along? And how will I know what to think, say, or do, in the meantime?

The questions come thick and fast, piling on top of one another, pinning me down, keeping me from moving forward. Because I’m letting them. Because I don’t really want to change.

But what I want even less is to stay the same. Unlike my friend, I’m not comfortable where I am. If my only options are bad and worse, then I guess bad will have to do. It’s time to start checking out the local real estate, because it looks like I will be living here.

Addendum:  My friend called me back this afternoon to tell me she was entering an intense outpatient program for substance abuse, and promised to keep in touch.  

So it looks like we’re both going to be changing, after all.

About C. M. Condo

I am a late-diagnosed, high-functioning autistic living with chronic pain. I started this blog in March of 2014 as a way to try to process what was happening to me. It is my hope that by sharing it with you, we can both gain something, or at least learn something, from my experience.
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2 Responses to house-hunting

  1. christellsit says:

    That was effing brilliant. I know that you are scared about the new you. But the new you will still be able to be physically active, just not like an athlete. In this space you told us, not long ago, about a story in the WP about a girl who had her malformed feet cut off and yet could do all sorts of physical feats with her prosthetic feet. You said, and you are right, that she was born with the ability to do those things, and that she was not the norm.

    Most people do not swim, run, etc., like an athlete. Many people don’t exercise at all. Some people do moderate exercise – not to the point where they are sore the next day. That is what is normal. I am not belittling your condition and I know it is hard to see anything but a bleak future right now. But you are going to be able to do what normal people do, diagnosis or not. Please, look toward that near future.

    Those athletic pursuits that you had been engaged in were a relatively recent and short part of your life. I wish that those athletically gifted people who were encouraging/pushing you had listened to you instead. Or maybe you didn’t tell them how bad and how long you hurt after what most people would consider over-exertion. Yes, you hurt more and longer than they, but your body still told you, as theirs would tell them, that you had done too much.

    I wish you had told me about your experience in PE while it was happening. I had no idea how much you wanted to keep up and how painful it was when you kept failing. (Yeah, a Mom needs to hear these things.) But, then, you always were independent – never asking or wanting help with anything. I knew that sports were never going to be “your thing” but I never saw your suffering. Why didn’t you tell me?

    Ah, well, we can’t go back, and the past has nothing else to offer. Yes, you are about to begin a new life. It’s scary on the shaky bridge that spans the chasm between the old and the new. Indeed, it is stomach-churning-terrifying at times, especially at the beginning when the new life seems so far away and too foggy to make out.

    Indeed, you will have a new life. You will be surprised at how joyful and exciting and beautiful it will be.

    Listen to Momma Ape. She knows. You know she knows.

    Liked by 1 person

    • seemorrigan says:

      As always, your wisdom is welcome and right on point. I suppose I should have said something, but I wasn’t the type of kid who had the wherewithal to go against what adults (other than my parents) were telling me. I thought they were right; I thought I wasn’t trying hard enough. And I kept thinking that for a long time afterwards. All the way until this, actually.

      But if it weren’t for you, I’m not sure I ever would have had the courage to seek out a rheumatologist and try to determine, once and for all, what my body had been trying to tell me all those times. And for the first time, I’m actually able to hear it. Maybe I’m not entirely ready to accept it, but at least the knowledge will be there, rattling around, and hopefully it will manage to work its way in.

      Thank you as always for your insight and support. Hugs! TGA


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