Butterfly Cauldron
Thursday, September 11, 2008
Letter to my disability
Dear Fibro,
I hate you. You suck. You are a bad, bad disease and will get no love and no cookie from me. You drain all my energy and then give me insomnia so that I can't sleep. You make me toss and turn and chase my girlfriend out of bed. You make me cranky. You make me so cranky and exhausted that I want to throtle my cats for unplugging the computer. For the millionth time. You make me so tired that I can't stand up long enough to take a shower and that makes me cranky because I really, really, really want to wash my damned hair, dammit.
You freak out my Emmy, which pisses me off. Seriously, give us a break, dammit. Or I'll do...something.
Leave my ankles alone, for fucks sake. I need them to walk. Also, my wrists? Leave them alone too. I need them to do stuff like drive or brush my hair or eat or, I don't know, take drugs to make you go away. So, stop it already.
I've tried to be reasonable with you. I've tried to let bygones be bygones. But seriously? Fuck off already. The best I've felt in years was in the immediate aftermath of a fucking hurricane? What??? You are one sick, sick bastard, you know that? Trees are fallen, powerlines are gone, people are trying to seal up holes in their roofs and THAT is when you decide to take a vacation? What the hell? You couldn't skip town when I wanted to have a night out? You couldn't leave long enough for me to go see a movie, but you'll run off for a week when every fucking thing is closed and the city's under a curfew? Seriously, I hate you.
And of course you come back just as everything is getting back to normal. When the movies are actually open for me to go see. When the restaurants and parks and book stores and all the other fun stuff have come back online, you come back from wherever the hell it was you went. (Admit it: you did go to hell, didn't you? To pick up some tips from other demons on how to torture me, right? I hate you. So much.)
So, here's the thing: leave me alone or I'll do something drastic. You remember the physical therapy? Ha. You didn't like that, did you? And those cortesone injections? Those pissed you off too. I'm not above all out war here, so leave me alone. Dammit.
I hate you. You suck. You are a bad, bad disease and will get no love and no cookie from me. You drain all my energy and then give me insomnia so that I can't sleep. You make me toss and turn and chase my girlfriend out of bed. You make me cranky. You make me so cranky and exhausted that I want to throtle my cats for unplugging the computer. For the millionth time. You make me so tired that I can't stand up long enough to take a shower and that makes me cranky because I really, really, really want to wash my damned hair, dammit.
You freak out my Emmy, which pisses me off. Seriously, give us a break, dammit. Or I'll do...something.
Leave my ankles alone, for fucks sake. I need them to walk. Also, my wrists? Leave them alone too. I need them to do stuff like drive or brush my hair or eat or, I don't know, take drugs to make you go away. So, stop it already.
I've tried to be reasonable with you. I've tried to let bygones be bygones. But seriously? Fuck off already. The best I've felt in years was in the immediate aftermath of a fucking hurricane? What??? You are one sick, sick bastard, you know that? Trees are fallen, powerlines are gone, people are trying to seal up holes in their roofs and THAT is when you decide to take a vacation? What the hell? You couldn't skip town when I wanted to have a night out? You couldn't leave long enough for me to go see a movie, but you'll run off for a week when every fucking thing is closed and the city's under a curfew? Seriously, I hate you.
And of course you come back just as everything is getting back to normal. When the movies are actually open for me to go see. When the restaurants and parks and book stores and all the other fun stuff have come back online, you come back from wherever the hell it was you went. (Admit it: you did go to hell, didn't you? To pick up some tips from other demons on how to torture me, right? I hate you. So much.)
So, here's the thing: leave me alone or I'll do something drastic. You remember the physical therapy? Ha. You didn't like that, did you? And those cortesone injections? Those pissed you off too. I'm not above all out war here, so leave me alone. Dammit.
Wednesday, May 28, 2008
One step forward, two steps back. . .
And, as is generally the case when I have a good day and overdue it, my body is in revolt. I currently have a nasty headache and the exhaustion is just about to reach my bones. Sweet Baby Cheeses, I hate Fibro!!
*Ahem*
So, in order to keep you all entertained while I am regaining my energy, I present you with a list o' fun things I've seen around the Interwebs.
For the fat girls: Fat Dinosty
New blog to read! Season of the Bitch (Awesome name!) Check out her 101 Things to Do in 1001 Days I'm a sucker for those things and intend to complete my own list shortly.
Read a poem.
Or maybe pick up a new craft?
I have, in fact, about a dozen posts I went to write. I just can't summon the energy right now. But I am still alive! Promise.
*Ahem*
So, in order to keep you all entertained while I am regaining my energy, I present you with a list o' fun things I've seen around the Interwebs.
I have, in fact, about a dozen posts I went to write. I just can't summon the energy right now. But I am still alive! Promise.
Labels: exhaustion, fibro, stuff
Friday, April 25, 2008
Permission to grieve
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.
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
