Butterfly Cauldron

When I was first diagnosed, almost eight years ago now, I was elated. Finally, finally, someone took me seriously. Someone took the time to listen to me, perform the tests necessary and give a name to what was causing me so much pain. When my doctor told me I definately had Fibromylgia and mostly likely had early-stage Lupus or Mixed Connective Tissue Disorder, a feeling of justification and pure joy surged through me. I wasn't crazy. I was right. Ha! I coasted on that energy for a good few months, taking all the medications my doctor prescribed and making changes in my life as she suggested.

But gradually, the feeling of vindication wore off and I was left with the reality that I'd been diagnosed with a disease. A chronic, incurable, life-altering, painful disease that general left no outward symptoms that other people could see or understand. And people around me started to get to the point where they thought I should just be over it all by now. I was 26, wasn't I? I was young, I had my whole life ahead of me, what was I waiting for? I wanted to get my Ph.D? Well, why didn't I? I wanted to go back to Italy? Well, why didn't I? I wanted to find a new job? So what was stopping me?

And the reality was -- this damned disease was stopping me. I was the same person I'd always been, in my mind, but my body had been diverted to a different path. All those things I wanted to do, all those things a woman my age should be able to do, required energy. Energy I no longer had. Desire? I had that. Ambition? I had that too. But I had a body that was fighting me every step of the way.

I had thought that, by the time I was 27, I would have my Ph.D. I had planned everything so well. And I was on schedule, until about a semester into my MA program. I'd been sick, off and on, before then but I'd always put it down to the stress of teaching full-time, carrying on a long-term, long-distance relationship and doing a graduate degree at the same time. And really, the sicknesses would go away after a few days or a week or so. That was normal, right? But one day, the sickness stayed. It seeped into my bones, my mind, my muscles, my sleep. There wasn't a single part of my that didn't hurt, that didn't ache, that didn't beg to be put out of its misery.

But I carried on anyway. I'm stubborn like that. I carried on, going to doctor after doctor, getting diagnosis after diagnosis (including one idiot doctor who told me the only thing he could think of that fit all my symptoms was liver cancer!), taking pill after pill. And I kept teaching, I kept my relationship alive (barely) and I managed to write and defend my thesis -- and I was told I had the most professional defense the department had ever seen. But the whole time, I thought I was dying. Literally, dying.

So. . .I decided to put off the Ph.D. I'd been in school since I was 4. Maybe I just needed a break. So, I got a job as a journalist and went to work. And stayed sick. Got sicker. Saw more doctors and doctors and doctors -- until finally, years later, I found two who listened and BANG. Diagnosis.

And yet, nearly a decade later, I still do not have my Ph.D. I still haven't written those books I wanted to. I still havn't built that life I dreamed I would. And that's a real, genuine lose. No matter what my life looks like now -- and really, it's not a bad life at all -- it's not the one I had planned. It's not the one that I had dreamed about. It's not the one I had nurtured and prepared myself for.

In a very real way, the person I was supposed to be has died. She's been replaced by someone who is much older than she looks, who has learned the hard way how to let go of things, who (I hope) is more forgiving of others and herself, who has more compassion than she would have otherwise. But that doesn't mean that the loss is any less painful, or any less worthy of grief.

The thing is -- people don't want you to grieve. It's hard for them. It means they have to face the reality of what has happened. And it means they have to face the reality that it may well happen to THEM. If you carry on, as I did in those initial years of my illness, as though nothing has changed, they can have that illusion too. To this day, my mother rarely admits that I am ill. She cannot handle that reality. We have conversations where she wonders why I haven't done the things I always wanted to do. And I have to restrain myself to keep from lashing out. Because she knows I'm sick, she just can't accept it.

The only way I've been able to come to terms with this new life, this new me, is to allow myself to grieve who I used to be. It's not selfish. It's not denying your new reality. It's not turning your back on the disabled community. If you don't make peace with yourself as you are now, if you deny that anything has changed for you, you're doing yourself and the community a disservice. You cannot build a good life on bitterness and lies. And yes, it is awful that this sickness has come. It is awful and unfair and if you have to cry for hours, then you have to cry for hours. If you have to rail against the unfairness of it all, then you have to. Because once it is out of you, you can see that there are still good possiblities. There is still a good, full, happy life for you. It's just going to look different and feel different and be different than what you expected.

Labels: carnival, disability, fibro, Lupus