Scene #1, 1999: I’m working behind a Whole Foods cheese counter in Northern Virginia. A friend walks up and says, “I knew you were here; I heard your laugh all the way over in the produce section.”

Scene #2, 2005: I’m sitting across from a colleague in Fresno. We’re discussing our first project together, which took place when my ME was as bad as it’d been to that point. He says, “When I met you, I didn’t realize you were sick. I just thought you were really shy.”

I think that was the first time my self-concept smacked up against the illness. I felt a surge of objection. I wasn’t shy! Nobody, before I was sick, would have ever confused me with shy. But it was a fair judgment based on what he’d seen. I drove home in turmoil – who was I – the person I thought of myself as, or the person I’d had to become because of my lack of energy?

I’ve been sick eighteen years today, and it’s taken that long to come to some peace on that.

Ten years in I wrote this, originally intending it for the blog, but never posted it; I decided it was more than I wanted to say in public then. I’m ready now:

On the inside, I feel like I’m still the person I was ten years ago. She never gets to come out to play, but she’s always there, occasionally poking at me, and if ME were cured tomorrow, I would go right back to that identity. This person I am instead is a concession, one made because I have no choice.

It probably seems silly that I’m still trying to hold on to that old persona. It probably is silly. But I feel like if I concede to the illness, and fully admit that this is the person I have to be – well, it’s a loss not even a decade of living this way has prepared me for. The illness has taken so much from me, but I feel like accepting this alternate identity is something I can’t do. I can’t let it have the last word on who I really am, even if I know on every level that the odds are I’ll never get to be the old Jocelyn again.

I’ve lost any ability to pretend I’m not sick, because I went too long stubbornly trying to cling to parts of my life that were normal before I fell ill – but I can still hold out in small places psychologically. This tiny bit of psychic defiance costs me little, except for the heartache and tears that come when I’m occasionally startled into noticing the difference. I can be, I have been forced to give up almost every kind of activity, but this is a sacrifice I’m not willing to make, because to accept it, to me, would be to say that I’m okay with who I’ve become.

And there’s a big difference between the well me and the sick me – I was intense, and I’ve had to cultivate apathy; I was talkative, and I’ve had to learn to be quiet; I was outspoken, and I now let many thoughts go unheard; I was energetic, and I’ve become stinting of my efforts; I was stubborn, and…okay I’m still stubborn, but I’ve had to let go of decisions and outcomes; I was highly idealistic, and I’ve had to make a ton of compromises; I was generous to my friends and family, and I now have little to give; I was a creative dresser, and now I live in pajamas.

In my pre-illness life, I had strong feelings about almost everything – especially apathy! I hated it; I felt like it was the opposite of personal intensity. I felt deeply (and perhaps self-centeredly) that the world would be a better place if more people felt that way. It’s impossible for me to muster the energy for “intense” now. I can’t burn that brightly anymore.

I can’t grab hold of an idea or a project and go full tilt on it. Everything has to be done in dribs and drabs to stay inside my energy envelope, and if I want to add one thing, something else has to be set aside. Because of that limitation, I’ve spent many years looking for tiny apertures through which my light can shine, as it can’t blaze any longer, and trying to be satisfied with those as my best effort – because they are my best effort. 

I got forced away from the idealism of youth, rather than having had it fade, as it does for some. I thought I would always be idealistic, and deep down, I am, but my idealism has few outlets now. I rely on others for so much, and I’m so fragile, that a lot of my would-dos stay just that.

I never stop wanting to accomplish more, but sometimes, no matter what you do, the universe says NO.

Coming to believe that my life still has value, even though I can do almost none of the things I used to do, has been less of a challenge than I think most people would think it was. I never have trouble believing it. I’m reliably angry about having to value my life at the level of function I have, but I don’t struggle to do so.

So I hold what I think of as my true identity at bay with an uneasy truce, knowing she’s something I can’t afford, and constantly wishing I could have her back. I don’t want to be the person I’ve become, but I know I can’t be the person I was.

Eight years later, I don’t feel like I have to hold that old identity quite so tightly. Some of this is its natural recession into the past, I think; it’s so long ago now that my well self doesn’t feel as present, as accessible, as wounding as it did for a long while.

It was; I know it was; I also know it can’t be now. I no longer feel like accepting it means being okay with it. Accepting it is not the loss; the loss itself was the loss.

I understand intensity and apathy better now, too; it’s clear in that old passage that I think of apathy as the opposite of intensity, and I suppose I no longer think that’s true. Apathy implies not caring, and I never stop caring; it’s just that I can’t do anything about that caring. At my best, I hold it loosely in the same way I hold that old identity.

By doing so, I think I have more access to intensity now; I continue to look for those tiny apertures. I can find what I enjoyed about my personal intensity in measured doses, and where I can find that has been modified by the years of illness. My scale for what counts as intense has become markedly more sensitive. It no longer needs to be, as it was, out in the world, or a whole day long, or something for which I get recognition – when I’m doing well, I can find what I loved about that aspect of myself in the tiny household tasks I sometimes can do, or in the satisfaction of being able to perform an act of self-care, or in crafting a paragraph, all the way down to thinking through why I identify with a work of art.

When I’m not able to reach out for intensity in any way, I think I’ve better cultivated a spirit of letting the world pass over my being, just out of necessity. I’ve had to learn better to exist in the present, because when I do so successfully, it keeps me from heartache about the things I wish I was doing that I can’t.

And – you know, I no longer think I’d go right back to that old identity. I’d resume a great many activities I’ve had to divest myself of, and I’d pick up some hobbies that had always been a someday I’d like to kind of thing – tap dancing, drums, formal voice lessons – but the illness has changed my worldview. I’m not a temporarily embarrassed well person any longer; ME is no longer an experience I feel I could put behind me. Even well, having known that depth of illness, it would always be present for me. If I could leave the kingdom of the sick, I would never be able to forget what it was to be a subject, would always be conscious of, seeing for, those still there.

So that all sounds like success, and I suppose it is; I feel more at peace with this particular question of my identity, but it doesn’t mean I’m at peace with the disease. I don’t want to put some facile sentiment, some pat truism, some easy conclusion here about the disease as a whole, because that’s not authentic to what I feel.

Even after eighteen years, I don’t feel like I’m at peace with the illness. Being in therapy this past year has made that clear. I haven’t even attempted to seriously grapple, there, with the constant trauma of being sick. The few times it’s come up in passing, I’ve been reduced to tears pretty well immediately, and it’s hard to even begin to make therapeutic progress on something when it undoes you as fast as talking about the illness does to me, at this point.

Right now I still feel like I can only deal with the bit of it I have to deal with each day. It’s too much – being robbed of years of youth; having my career snatched away; losing my independence; having to live in the upside-down world that accommodating the disease requires; the funding injustice and how that sometimes contributes to a sense of hopelessness.

I do have some accomplishments of the last eighteen years to point to; I’m still alive, and that’s not insignificant. It’s an accomplishment to which I and people I love have had to apply our diligence and one I’ve achieved because of health care privilege.  Using that accomplishment to write here is an accomplishment. Using that accomplishment to suggest a possible answer to a question in the 25% of ME group about how someone else might sustain their own life is an accomplishment. They’re not accomplishments I ever would have sought, but they are accomplishments.

I wish for more accomplishments in the future, and if that proves impossible, I wish for more peace.