wherever you go

I, and my pain, are now at the beach. Momma Ape and I drove separately from the rest of the family yesterday, leaving an hour and a half early so we could could take a few long breaks and still all arrive at the seashore at the same time. And thank goodness we did it that way, or I wouldn’t be here. There’s no way I could have driven the car, or even sat in the car, for any longer than forty-five minutes at a stretch.

By the time we arrived, I had a hazy awareness that I was in none too good of a shape, but I was happy to have been able to get here, so I resolutely set that awareness to the side. We joined up with the rest of the group, and I was able to perpetrate a decent facsimile of OK for just long enough to follow the group to the rental condominium. After that, there was no more perpetration, and I was forced to arrange myself in a horizontal position on the recliner with an ice pack while the rest of the gang got themselves situated.

It’s quite a production, moving the ape clan to a different location for two weeks. Momma Ape’s condition requires a lot of amenities, and this year, we got to add my condition’s amenities to that list, making for two fully laden SUV’s worth of stuff, and that was just for her and Big Daddy Ape and me. The rental unit is basically someone else’s home that we’re staying in, so we have to bring everything we will need while we’re there, such as towels, sheets, and groceries, in addition to our personal belongings.  It’s a lot of set-up, rearranging, and unpacking, and of course, running around to get things we didn’t bother to bring with us.

As the only childless adult, I usually used to shoulder a lot of that labor, and between me and Big Daddy Ape, we would have everything done by the time he drove to the sub shop to pick up dinner. But this year, I had to lie on my back and seethe while he handled things by himself.  I glumly realized how helpful I must have been as it became clear that he wouldn’t get everything done by the end of the day. Worse, there wasn’t a thing I could do about it; the 150-mile drive had rendered me useless. Even pulling myself up into a sitting position to join everyone for dinner last night was almost more than I could manage.

I was in slightly better shape this morning, and took a short walk when I got up, both for the exercise and because I knew no-one else would be up for at least an hour and I needed something to do. But by the afternoon, there was a sword fight going on under my scapula, and I couldn’t find a comfortable position. I was already exhausted just from the walk, cooking breakfast, and reclining in the sun for a couple of hours with my sister.

I wanted to cry, but I didn’t have the energy. Even with Momma Ape in the next room, I felt desperately alone. Out the sliding glass doors that open onto the balcony, I could see the ocean front densely packed with umbrellas and blankets, with lots of people swimming and running around. It felt as if the scene had been specifically engineered to upset me as I huddled inside the rental unit, nursing my shoulder with a gel wrap.  There was a group of slender, bronzed teenagers playing frisbee, trying to prove to each other and the surrounding adults they were interested in doing something besides flirting with one another, quaintly unaware that the surrounding adults couldn’t care less.

A frisbee is about the only thing I ever learned to throw properly. Catching one, of course, was another matter entirely, but when my own little bronzed self was prancing around in a bikini at seventeen, no-one seemed to mind that I kept dropping it and having to bend over to pick it up. Be that as it may, seventeen was probably the last time I threw one, or cared to. But of course, faced with the fact that I suddenly couldn’t, I was bitter about it.

Truth be told, I’m bitter about everything. Standing up – just standing up – wears me out. Last summer, I horse-played with my niece in the pool for a couple of hours every day. I carried her on my hip into the ocean waves, and out, and in, and out, as she shrieked with fear and delight. I never took the elevator up to our condo, choosing instead to sprint up and down the three flights of stairs when coming or going. I ran interference with the niece and volunteered for countless little errands so that the parental apes could enjoy as much beach time as possible.

There is none of that this year. Earlier today, a mere ten minutes of standing at the shore break and watching my niece make her first attempts at body-surfing was exhausting. The pain medication gives me approximately ninety minutes of relief, starting about thirty minutes after I take it, irrespective of dosage. Once it wears off, it’s an hour or more’s wait, in pain, until enough time has passed to take it again. And while I’m waiting, my mood tanks, predictably, and I get annoyed with everything and everyone around me, predictably, and I get snappish, if not downright mean, which may also be predictable, but isn’t fair to my fellow apes.

So I hate myself for it, and I add that to my hatred of everything else that’s going on with me, and I want to scream and scream, on and on, loud enough for dogs to bark three cities away, and even that probably wouldn’t be enough. Because I’m used to being disabled at home, but the last time I was here at the beach, with my family, where I’ve been virtually every single August since I was seven months old, I was about as physically fit and strong as I could get.  And I suspect that was the high water mark, and that I will never be back there.  It’s true that in my current mental state I tend toward the morose, but it’s also true that, morose or not, I’m probably right.

Even though I knew I’d be taking it easy this year, I failed to appropriately prepare myself for the effect my condition would have on my vacation activities, in no small part because I failed to comprehend just how weak and easily exhausted I truly am. My current level of functionality (if one could even call my paltry activities anything with the word “function” in it) introduced itself into my life at home a little at a time. Of course I knew I was down a lot of strength and stamina, but it seems I was fuzzy on the actual loss totals.

Well, I’m not fuzzy now. I’m horrified, and resentful, and deeply upset. My pain level has been quite high since last night, dropping just below a five for the given ninety-minutes of active pain medication before shooting back up to a seven. Or possibly an eight, but I don’t want to own the reality of once more being in the neighborhood of an eight just yet.

It’s not that I didn’t set my expectations low with regards to this trip. It’s that, apparently, I didn’t set them low enough. Because in addition to me not enjoying much of anything, my family is for the first time being treated to front row, 50-yard-line seats for my condition. I had been rather adeptly hiding the ugly details from them for the past nine months, but the jig is now officially up.  Revealing the unvarnished truth of my situation to them is incredibly upsetting, not just to me, but probably to all of us, and has enabled me to add guilt at being a burdensome, worrying shadow of my former self to my fast accumulating pile of self-loathing.

When I sit down on the bed and cry at home, only the cats jump up to comfort me. This evening, it was Momma Ape with her arms around me – the same Momma Ape whose throat I jumped down this afternoon for some comment she made that concerned me in no way whatsoever other than the fact that she made the mistake of making it after my pain medication wore off.

I don’t know how I’m going to do this for the whole rest of the trip. I’m scared and depressed and I want to go home. Except I don’t want to go home, because home is a sickly reminder of how bad I’ve felt and how long I’ve felt that way and I needed desperately to get away from there. Home felt like a cage, and I wanted out. And it’s not like I expected the beach to make me feel brand new. I just figured it might help me relax a bit to not have to do all of the stuff I have to do at home, which in turn would help reduce some of my pain and fatigue.

It wasn’t until I got here that I realized that it wasn’t home, or the stuff I had to do, that was the cage. It is my condition and its effects on my mind and body that have been pressing on me. And no matter what I do, or where I go, it’s always with me. And now it’s here, in this haven of sparkling sea and salty sun, a place that has always meant respite for me, ever since I was a little girl. I can’t escape from what’s going on inside me. Not even here.

I’m just going to have to learn how to cope here, like I did at home, except here, I have to learn it a lot faster, because I’m only going to be here for ten more days. This is the first real test of everything I’ve learned about myself and about what’s really important to me, and if I don’t pass it, this vacation will be pretty grim.

I’m going to decide, right now, that I am going to pass this test. Because I didn’t just bring my injury with me. I brought the person who has been learning to live with it with me, too. And once I get her up to speed, everything else will be OK – really OK. No matter where I go.

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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