My friend Karen commented on my last post that I was having a rough go of it and it got me thinking that I might be doing better than I expressed. I probably downplay the improvements partly out of superstition, but also because the hourly changes in this disease make any quantification of trends virtually impossible. And, even more than that, it’s the Can I Get A Witness? thing — that obsessive need I have to not sugar-coat… to make sure reality is patently clear… to lay bare the horrors and try to put them in perspective, held in relief against what life used to be like and, also, how much worse it could be. People are so excited to see progress that I get lovely messages saying, “Glad to see you’re feeling better!” When you’re sick like I am, there’s this knee-jerk reaction to follow up any proclamation of “I’m doing well” with but I still have X, Y and Z going on. Or “I went to the dog park” with but that was one hour out of a week that I spent mostly in bed. God forbid anyone gets the impression that I’m not still very ill.

Believe it or not, this is progress for me. I spent so long living like a clenched fist, ashamed of what had happened to me. My sense of self was so tethered to being vibrant, independent and energetic, that the thought of being seen as sickly paralysed me with loathing. Not only did I, myself, squeeze closed in defiance against my illness, but I brought others into the ruse by vowing them to secrecy and deflecting any concern. I remember, six months after I got sick, telling our administrative assistant that I was leaving my job. “I’m sure you’ve noticed how sick I’ve been…” “No, you are?” she said and I was stunned into silence. How could she not have seen my white-knuckling it through the days? “Well, I’m leaving, but it’s only temporary, I’ll be back. If anyone asks, I’m taking a sabbatical as a bonus for all the years I’ve been here. Don’t mention illness to anyone.” It is only recently that I’ve started to relax my hold. I told an ex-boyfriend what was going on and was met with such empathy and kindness that he might as well have physically unfurled my clenched grip. He didn’t seem to be thinking, Phew, dodged a bullet there like I assumed he would. So, I started talking about it a bit more, without that roiling, acrid squirm in my belly. I mentioned it on my facebook page, and have slowly — very, very slowly — started to be ok with sick being part of my… brand (for want of a better word). So, I try to embrace my unsolicited and redundant descriptions of life as healthy steps towards self-integration.

But things are better and I’m probably handling this life better, too. I looked in the mirror the night before last and I was smiling while washing my face. I looked normal, I felt almost normal. I remembered how there was a time that my husband was washing my hair and making my meals. There were months when I lay in my room, hour after hour, bouncing between panting, wild-eyed terror and feeling like a slab of immobile meat, with barely a breath or pulse. You can have a husband downstairs or a friend a phone call away and still be totally alone, planning your permanent solution because it doesn’t matter if the problem is temporary, you can’t last one more minute. There’s only so many times you can tell someone how awful you feel. My few confidantes took on the burden of that while I folded into myself, away from friends and family.

How are you? I miss you!
I’m half dead, scared and lonely. Miss you, too.

There’s only so many times anyone can deal with that, even your closest allies. So, after a while, you stop talking about it. You decide that you better start grinning and bearing it for everyone’s sakes, including your own. But the need to express the loss never goes away — at least not yet — which, I suppose, is why I continue with this blog.

So, without the negative couching, I will say, I feel better than I did a year and a half ago. Many chronic symptoms are more sporadic and I feel hardier, able to push myself without fear. Key to all of this is human contact. I’ve let down my rigid protection and connected with some people online who don’t judge or blanch in the face of the truth, who can listen, laugh and call me out on my shit. This has truly been hard for me, but I’ve been disarmed by their candor and charmed by their openness and that has allowed me to trust. I still tread lightly and share carefully, maybe not believing I won’t have to suddenly curl quickly into a protective ball like a rolly polly, but I feel a quiet evolution inside and that has made me less bitter more optimistic happier less bitchy more at peace.