Butterfly Cauldron
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
Thursday, November 29, 2007
There is no life on Mars
I doubt anyone actually reads this thing anymore, but anyway....the following post will be rantish, whiny and totally self-centered. You've been warned.
First, I have PMS and (maybe) the flu. I do not feel good in any way. I'm tired, I have a fever, I have a headache and I just want to cry. My mother and SiL will be arriving tomorrow evening to spend the night and go shopping Saturday. I have zero money for this and I'm going to ask them for gas money. I don't usually do that, but if I don't, we'll be shopping from the busy isle of my couch. So. I also am going to insist we go to one of the four resturants I have a gift certificate from, otherwise I can't eat. I really wish they would come next weekend, but alas, it is not to be.
I'm really, really cranky. This has to pass, because I have a job interview next week and I need to be sharp. If I get this job, I won't have to move and will be making at least $500 extra a month. That's the base pay and I intend to ask for more than that. I've got a masters degree and eight years of relevant experience. Dammit, I wanna get paid.
I'm feeling very down on my romantic prospects again. Brought on by general blahness and a thread on a mailing list I'm on. I am not a conventionally attractive woman. That's fine, really, but now I'm starting to think I may very well end up spending all my time alone. Now, normally that doesn't disturb me too much, so may this is just the hormones and flu talking, but it all makes me want to curl up in my bed and hide forever.
(FYI -- when you have a fever and you cry, your tears feel like they've been boiled. Did you know that?)
I feel tragically boring. Like there isn't a single thing about me that's interesting or unique. I'm just kinda....blah. I don't have any stores of knowledge I can break out to impress people. I don't have any outstanding talent. I'm not musical or dramatic or....I don't know. I'm not even particularly domestic. I'm just....boring.
I'm 33 years old, I have four cats, no real relationships and a chronic illness. Please god, don't let this be the flu. I don't have a rheumatologist in town and it takes about two months to get an appointment with one as a new patient.
First, I have PMS and (maybe) the flu. I do not feel good in any way. I'm tired, I have a fever, I have a headache and I just want to cry. My mother and SiL will be arriving tomorrow evening to spend the night and go shopping Saturday. I have zero money for this and I'm going to ask them for gas money. I don't usually do that, but if I don't, we'll be shopping from the busy isle of my couch. So. I also am going to insist we go to one of the four resturants I have a gift certificate from, otherwise I can't eat. I really wish they would come next weekend, but alas, it is not to be.
I'm really, really cranky. This has to pass, because I have a job interview next week and I need to be sharp. If I get this job, I won't have to move and will be making at least $500 extra a month. That's the base pay and I intend to ask for more than that. I've got a masters degree and eight years of relevant experience. Dammit, I wanna get paid.
I'm feeling very down on my romantic prospects again. Brought on by general blahness and a thread on a mailing list I'm on. I am not a conventionally attractive woman. That's fine, really, but now I'm starting to think I may very well end up spending all my time alone. Now, normally that doesn't disturb me too much, so may this is just the hormones and flu talking, but it all makes me want to curl up in my bed and hide forever.
(FYI -- when you have a fever and you cry, your tears feel like they've been boiled. Did you know that?)
I feel tragically boring. Like there isn't a single thing about me that's interesting or unique. I'm just kinda....blah. I don't have any stores of knowledge I can break out to impress people. I don't have any outstanding talent. I'm not musical or dramatic or....I don't know. I'm not even particularly domestic. I'm just....boring.
I'm 33 years old, I have four cats, no real relationships and a chronic illness. Please god, don't let this be the flu. I don't have a rheumatologist in town and it takes about two months to get an appointment with one as a new patient.
Labels: depression, Lupus, sadness
Saturday, November 17, 2007
I'm more than a little tired
I waste entirely too much time doing, literally, nothing.
This bothers me, because there are sooo many things I could be doing. It makes me a boring person, I think. How interesting is it that what I can talk the most about are my cats? *sigh*
I have to remind myself that I have to be easy on myself. It's not my fault that I'm so tired. It's not my fault that when I get home from work all I can do, literally, is curl on the couch and watch tv. Or lay in bed and watch tv. This is what happens when you're dealing with a chronic illness. It steals all your energy. It's not my fault, but I just feel horrible about it.
I don't feel bad, physically. I've got some pain, but not so much it's unbearable. I'm just....so fucking tired. I just got out of bed, after trying to nap, and I feel....I went to WalMart today. Got my oil changed. Picked up some groceries. And I came home, ate lunch and collapsed. I've got all day to do any damn thing I want and what do I do? I lay down. I watch tv. I flip channels. I cuddle kittens. I do nothing. At all.
I'd like to go finish my dishes or my laundry or I don't know, write some fabulous paper about compariative religions, but I can't. Because I"m so very tired. I hate this. I hate it so much I just want to scream, but I'm too tired to scream. I'm too tired to do anything. I need to wash my dishes and clean out my fridge. It won't take even an hour and yet....I'm not. I can't.
I feel the aching tiredness down into my bones. My fingers hurt, my toes hurt, everything hurts in an aching, persistant way. I don't want to go take any more medication, even though I know I should.
I'm not depressed, I'm just fucking tired. *sigh*
This bothers me, because there are sooo many things I could be doing. It makes me a boring person, I think. How interesting is it that what I can talk the most about are my cats? *sigh*
I have to remind myself that I have to be easy on myself. It's not my fault that I'm so tired. It's not my fault that when I get home from work all I can do, literally, is curl on the couch and watch tv. Or lay in bed and watch tv. This is what happens when you're dealing with a chronic illness. It steals all your energy. It's not my fault, but I just feel horrible about it.
I don't feel bad, physically. I've got some pain, but not so much it's unbearable. I'm just....so fucking tired. I just got out of bed, after trying to nap, and I feel....I went to WalMart today. Got my oil changed. Picked up some groceries. And I came home, ate lunch and collapsed. I've got all day to do any damn thing I want and what do I do? I lay down. I watch tv. I flip channels. I cuddle kittens. I do nothing. At all.
I'd like to go finish my dishes or my laundry or I don't know, write some fabulous paper about compariative religions, but I can't. Because I"m so very tired. I hate this. I hate it so much I just want to scream, but I'm too tired to scream. I'm too tired to do anything. I need to wash my dishes and clean out my fridge. It won't take even an hour and yet....I'm not. I can't.
I feel the aching tiredness down into my bones. My fingers hurt, my toes hurt, everything hurts in an aching, persistant way. I don't want to go take any more medication, even though I know I should.
I'm not depressed, I'm just fucking tired. *sigh*
Tuesday, April 17, 2007
I had a dream. . .
. . .that I was on the Dr. Phil show. I was a doctor and I was telling Phil off.
Why? Well, because the idiot (and he really did do this a few months ago) had made statements on his show that Lupus was simple a form of arthritis and was not life-threatening or debilitating. (He had a guest on who had Lupus and he was saying he'd done 'his homework'. Yeah. Right. Dr. Zan says, you fail.)
So, I was on his show, reading him the riot act. Tell the 20K people that die from Lupus each year the disease isn't life-threatening. Tell the 10s of thousands more who become debilitated by the illness each year that it's just a form of arthritis and not disabling. Grr. Arg! Die pig die!!
I was so wound up that I woke up arguing. I was in my bedroom, talking to Dr. Phil and I couldn't calm down for hours. Fucking hours! Gah.
Why? Well, because the idiot (and he really did do this a few months ago) had made statements on his show that Lupus was simple a form of arthritis and was not life-threatening or debilitating. (He had a guest on who had Lupus and he was saying he'd done 'his homework'. Yeah. Right. Dr. Zan says, you fail.)
So, I was on his show, reading him the riot act. Tell the 20K people that die from Lupus each year the disease isn't life-threatening. Tell the 10s of thousands more who become debilitated by the illness each year that it's just a form of arthritis and not disabling. Grr. Arg! Die pig die!!
I was so wound up that I woke up arguing. I was in my bedroom, talking to Dr. Phil and I couldn't calm down for hours. Fucking hours! Gah.
Monday, September 25, 2006
The wheel's turning
Oh, Autumn, my favorite season, where have you been?
At long last, the temps here have dropped to a completely reasonable level and I feel....alive. The summer is my enemy, the sun wants to kill me and the humidity wants to drown me. But the fall? Ah, the fall is my friend, indeed.
Right now, it's 10 a.m. and a lovely 63 degrees. I have the windows open so I can feel the air and it's just...lovely. Not two weeks ago, it was over 90 degrees at this time. I was in pain, I was cranky, I was pissed off. Now I just want to lay around, soaking in the lovely atmosphere. Actually, that's not true. I don't want to lay around. I want to move, do things, be places, be alive.
Fall does this to me every year. My pain goes into remission. My disease decides to go to sleep for the winter, like a bear hibernating in her den. One moment, I'm barely able to move, the next I can dance. It's a weird thing, that sudden shift but I've learn to relay on it. Last year, I didn't get a break. Last year, I was having lots of problems with my gallbladder, but we didn't know that's what it was. So I was in pain for almost a solid year. But not this year. No no, I'm getting my remission and I just love it. *sigh*
Autumn always seems hopeful to me. It always makes me believe the best is possible. The cycle is begining to close, to wind down. This peace is my reward for a year of holding on, for believing I can endure and for finding people and things to love and make me happy despite the pain.
I like, around this time, to take stock of my life, to look at it and sort out the good from the bad and hold the good up, higher than the rest. Because the truth us, for all my problems, my life isn't all that bad. Yes, I have a chronic illness and yes, it causes me a great deal of pain occassionally. But it's treatable and it's not killing me. Yes, I have a crappy job and it doesn't pay me enough, but I have a place to live and people in my life who aren't going to let me starve and fall through the cracks. Yes, I'm still single and have some er, issues, with relationships that need to be sorted out, but I also have the privelage of living on my own, of taking care of myself, of discovering who I really am and that makes me strong. And lucky.
I also like to make lists of things that make me happy, so I can look back on them when I'm down and remember that life isn't as dark and bleak as I may think it is, just at that moment. So. Things that make me smile:
My niece, Kady. She's so wonderful, she's almost (but only almost) enough to make me want one of my own.
Scented candles, made with my own two hands
China and Frank, the demonic felines who have chosen to live with me. Sometimes, a warm cat is the most healing being in the universe.
Friends that love me
Modern medicine!
Turtles
Butterflies (Yes, apparently, naming your blog after Her is enough to invite Butterfly to be a spirit helper. Who knew?)
Unread books
Tulips
Finding the pair of boots I thought I'd lost (Turns out, they were under a box in my closet)
Painting
Christmas -- even a heathen like me loves Christmas. Mostly because my family gets together. And there are presents.
Growing my hair long
New nail polish
Pretty earrings
Lip gloss -- you can never have too much lip gloss
The sound of rain against the windows
The feel of freshly laundered towels
New sheets
My new handpainted, butterfly canister set. (Plus, found them on sale. Go me.)
The scent of fresh brewed coffee
Hot tea after a long day at work
Unexpected e-mail -- that's not spam
Discovering cds I'd forgotten I had and listening to songs I'd forgotten I loved
Dancing around the living room in the dark
Sleeping late on Sunday mornings (my own way of worship)
Knowing no matter how badly I mess up, I can always go home again
The fact I've got my first novel half finished. I mean, that means I'm almost done, right?
Temporary tattoos
Lunch with friends
Tin Roof ice cream
Fresh apples
Okay, that'll do for now. The point is, there's always something that can make me smile, if I just stop and think about it. And I always remember that at this time of year and I always have that to look forward to when things get rough the rest of the time.
At long last, the temps here have dropped to a completely reasonable level and I feel....alive. The summer is my enemy, the sun wants to kill me and the humidity wants to drown me. But the fall? Ah, the fall is my friend, indeed.
Right now, it's 10 a.m. and a lovely 63 degrees. I have the windows open so I can feel the air and it's just...lovely. Not two weeks ago, it was over 90 degrees at this time. I was in pain, I was cranky, I was pissed off. Now I just want to lay around, soaking in the lovely atmosphere. Actually, that's not true. I don't want to lay around. I want to move, do things, be places, be alive.
Fall does this to me every year. My pain goes into remission. My disease decides to go to sleep for the winter, like a bear hibernating in her den. One moment, I'm barely able to move, the next I can dance. It's a weird thing, that sudden shift but I've learn to relay on it. Last year, I didn't get a break. Last year, I was having lots of problems with my gallbladder, but we didn't know that's what it was. So I was in pain for almost a solid year. But not this year. No no, I'm getting my remission and I just love it. *sigh*
Autumn always seems hopeful to me. It always makes me believe the best is possible. The cycle is begining to close, to wind down. This peace is my reward for a year of holding on, for believing I can endure and for finding people and things to love and make me happy despite the pain.
I like, around this time, to take stock of my life, to look at it and sort out the good from the bad and hold the good up, higher than the rest. Because the truth us, for all my problems, my life isn't all that bad. Yes, I have a chronic illness and yes, it causes me a great deal of pain occassionally. But it's treatable and it's not killing me. Yes, I have a crappy job and it doesn't pay me enough, but I have a place to live and people in my life who aren't going to let me starve and fall through the cracks. Yes, I'm still single and have some er, issues, with relationships that need to be sorted out, but I also have the privelage of living on my own, of taking care of myself, of discovering who I really am and that makes me strong. And lucky.
I also like to make lists of things that make me happy, so I can look back on them when I'm down and remember that life isn't as dark and bleak as I may think it is, just at that moment. So. Things that make me smile:
Okay, that'll do for now. The point is, there's always something that can make me smile, if I just stop and think about it. And I always remember that at this time of year and I always have that to look forward to when things get rough the rest of the time.
Wednesday, June 21, 2006
Summer always gets me down
And so, it shouldn't surprise me that I'm depressed on the solstice. Longest day of the year and all that. Welcoming in the summer. But summer always makes me sad. All the sunshine, all the heat, all the seeming pointlessness of it all. Summer triggers numerous Lupus and fibro flares, leaving me in lots of pain for months on end. And so....
I haven't posted much lately because I've been feeling a bit down. Surprise. There are things I want to talk about too. Like my state just signed into law a truly draconian abortion law. And there's that whole blowjob thing going on thanks to Twisty. (For the record, I don't like 'em so I don't do 'em. Your mileage my vary. I don't get off much on judging what consenting adults do, so if ya like 'em, more power to ya. I will, however, be posting a bit about power imbalances in relationships. As soon as this blue funk passes.) Then there's a followup to the bit about the Wiccan soldier getting a pentagram on his tomb. I've got that article here somewhere. Has some nice quotes from some Christian orgs that I wanted to talk about. Mostly though, I just want to come home from work, curl up in bed, eat ice cream and sleep. Which is what happens to me in the summer, because I'm just exhausted all the time.
I just started a new anti-depressant that I really love. (Oh yeah. There's that post about depression over at Pandagon I wanted to talk about. See? I'm reading lots. Just can't seem to get myself motivated to post about it. Yet.) If you're looking for a good AD, I recommend Cymbalta with no reservations. It's totally quashed the numbness/pins-and-needles in my hands and legs from the periphial neuropathy my Lupus has caused. Which is totally awesome. So, I'm sure I'll feel better in a few days. Just right now...not so much.
I haven't posted much lately because I've been feeling a bit down. Surprise. There are things I want to talk about too. Like my state just signed into law a truly draconian abortion law. And there's that whole blowjob thing going on thanks to Twisty. (For the record, I don't like 'em so I don't do 'em. Your mileage my vary. I don't get off much on judging what consenting adults do, so if ya like 'em, more power to ya. I will, however, be posting a bit about power imbalances in relationships. As soon as this blue funk passes.) Then there's a followup to the bit about the Wiccan soldier getting a pentagram on his tomb. I've got that article here somewhere. Has some nice quotes from some Christian orgs that I wanted to talk about. Mostly though, I just want to come home from work, curl up in bed, eat ice cream and sleep. Which is what happens to me in the summer, because I'm just exhausted all the time.
I just started a new anti-depressant that I really love. (Oh yeah. There's that post about depression over at Pandagon I wanted to talk about. See? I'm reading lots. Just can't seem to get myself motivated to post about it. Yet.) If you're looking for a good AD, I recommend Cymbalta with no reservations. It's totally quashed the numbness/pins-and-needles in my hands and legs from the periphial neuropathy my Lupus has caused. Which is totally awesome. So, I'm sure I'll feel better in a few days. Just right now...not so much.
Labels: depression, Lupus, pain, summer
Wednesday, May 31, 2006
Swimming with sharks
For the last six years, I have knowingly shared my body with an invader.
Lupus. Popularly depicted as a wolf, due to the Latin and the supposed wolf muzzle appearance of the face rash. But I always think of my disease as a school of sharks, swimming in my blood. Sometimes they sleep, eyes closed, mouths closed. Deceptively peaceful. Othertimes they wake, startled and hungry. Eyes like fired stars, teeth -- the teeth are huge. Sharp, pointed and so very intent on rending and tearing up everything in sight. And the only thing in sight is my body, my organs, the muscles and joints, defenseless against them. That's what I see when I think of my disease. That's what's been sharing my body these last years.
I've been asked before to describe the pain Lupus causes me. I say: My bones are concrete that's been set on fire. My spine is shattered glass rubbing slowly against my spinal cord. Sometimes, I beg the gods to let the cord break so I won't feel anything. Electricity shoots down my legs and my arms, the muscles expand and contract, jerking against my will. I drop things, I run into walls, I fall. I cannot pick up my niece when she holds her arms up at me, so happy to see me, because I'm afraid I'll drop her and hurt her and I'd never forgive myself if I did that. Friends lay their hand on my shoulder and I cringe, sobbing. The smallest touch leaves me in agony for hours. The straps of my bra hurt. Breathing too deeply makes my chest feel as though it were ringed with iron bars. I'm exhausted. So very, very tired. But I can't sleep. I can't focus. I feel like I'm moving through a fog. My vision changes, things get fuzzy and my eyes dry out. My face flushes, while the rest of my loses all color. The slightest exposure to sunlight sends me to my bed for hours. Or to the hospital, if I'm unlucky. Rashes break out across my chest and arms. Sometimes they leave scars. And most of this, no one can see. Most of the time, I look perfectly healthy. No one knows how much pain I'm in. No one knows how hard I cry at night. No one knows how I go to work, then go home and go straight to bed.
How do I explain what this disease has cost me? How do I say: I can't go into the sunlight. I have to get 10 hours of sleep a night or I'll be very sick the next day. I can't make plans because I don't know if I'll be sick or not. I'm afraid to start a relationship because I couldn't handle falling for someone then having them reject me when they realized how sick I get. I can't work more than 40 hours a week, so I can't take jobs that would pay me what my time is worth because they all expect 50 hours, at least. This disease is isolating, even when I fight to stay connected.
And then, how do I say what this disease has given me? How do I say: I'm kinder to myself. I'm more forgiving. I'm more inclined to give people the benefit of the doubt. I'm a better listener. I'm a better friend. I'm a better human being. I'm more focused on what I'm willing to accept in my life. I'm less concerned with what other people think of me, in general. I'm more able to truly enjoy my body, what it can do and what it can experience and how it works, when it works. I don't take walking for granted. I don't take breathing for granted. I don't take a night's sleep for granted. A day spent painting means more to me. A day spent writing means more to me. Phone calls to friends mean more.
Some days I think it's worth it, others I don't. Right now, I'm lucky. Right now, I'm not having a flare. Right now, I feel good. Tomorrow could be different. Tomorrow could be better. I don't know. Only, the thing is, neither do you. We all go through our lives, making assumptions about our health, about the time we've got left, about our jobs or our families or the people who love us. But, they're all just assumptions. The only real difference between me and someone who doesn't have a serious illness is that I've been made starkly aware of how fragile that illusion of control is. I didn't want to be. I rather liked my illusion. I liked my plans to go on and get my Ph.D. I liked the idea of being a college professor. I had visions of teaching at a small liberal arts college, having a little house with a couple of cats and a cactus garden and many happy days. But that didn't happen for me, thanks to this disease. So now I have a different life. It's not a bad life, but it's different. (The bittersweet thing? Now that I'm well enough to go back to get that Ph.D, I can no longer afford to. I'm swamped with medical bills and student loan payments which I can no longer defer.)
Lupus. Popularly depicted as a wolf, due to the Latin and the supposed wolf muzzle appearance of the face rash. But I always think of my disease as a school of sharks, swimming in my blood. Sometimes they sleep, eyes closed, mouths closed. Deceptively peaceful. Othertimes they wake, startled and hungry. Eyes like fired stars, teeth -- the teeth are huge. Sharp, pointed and so very intent on rending and tearing up everything in sight. And the only thing in sight is my body, my organs, the muscles and joints, defenseless against them. That's what I see when I think of my disease. That's what's been sharing my body these last years.
I've been asked before to describe the pain Lupus causes me. I say: My bones are concrete that's been set on fire. My spine is shattered glass rubbing slowly against my spinal cord. Sometimes, I beg the gods to let the cord break so I won't feel anything. Electricity shoots down my legs and my arms, the muscles expand and contract, jerking against my will. I drop things, I run into walls, I fall. I cannot pick up my niece when she holds her arms up at me, so happy to see me, because I'm afraid I'll drop her and hurt her and I'd never forgive myself if I did that. Friends lay their hand on my shoulder and I cringe, sobbing. The smallest touch leaves me in agony for hours. The straps of my bra hurt. Breathing too deeply makes my chest feel as though it were ringed with iron bars. I'm exhausted. So very, very tired. But I can't sleep. I can't focus. I feel like I'm moving through a fog. My vision changes, things get fuzzy and my eyes dry out. My face flushes, while the rest of my loses all color. The slightest exposure to sunlight sends me to my bed for hours. Or to the hospital, if I'm unlucky. Rashes break out across my chest and arms. Sometimes they leave scars. And most of this, no one can see. Most of the time, I look perfectly healthy. No one knows how much pain I'm in. No one knows how hard I cry at night. No one knows how I go to work, then go home and go straight to bed.
How do I explain what this disease has cost me? How do I say: I can't go into the sunlight. I have to get 10 hours of sleep a night or I'll be very sick the next day. I can't make plans because I don't know if I'll be sick or not. I'm afraid to start a relationship because I couldn't handle falling for someone then having them reject me when they realized how sick I get. I can't work more than 40 hours a week, so I can't take jobs that would pay me what my time is worth because they all expect 50 hours, at least. This disease is isolating, even when I fight to stay connected.
And then, how do I say what this disease has given me? How do I say: I'm kinder to myself. I'm more forgiving. I'm more inclined to give people the benefit of the doubt. I'm a better listener. I'm a better friend. I'm a better human being. I'm more focused on what I'm willing to accept in my life. I'm less concerned with what other people think of me, in general. I'm more able to truly enjoy my body, what it can do and what it can experience and how it works, when it works. I don't take walking for granted. I don't take breathing for granted. I don't take a night's sleep for granted. A day spent painting means more to me. A day spent writing means more to me. Phone calls to friends mean more.
Some days I think it's worth it, others I don't. Right now, I'm lucky. Right now, I'm not having a flare. Right now, I feel good. Tomorrow could be different. Tomorrow could be better. I don't know. Only, the thing is, neither do you. We all go through our lives, making assumptions about our health, about the time we've got left, about our jobs or our families or the people who love us. But, they're all just assumptions. The only real difference between me and someone who doesn't have a serious illness is that I've been made starkly aware of how fragile that illusion of control is. I didn't want to be. I rather liked my illusion. I liked my plans to go on and get my Ph.D. I liked the idea of being a college professor. I had visions of teaching at a small liberal arts college, having a little house with a couple of cats and a cactus garden and many happy days. But that didn't happen for me, thanks to this disease. So now I have a different life. It's not a bad life, but it's different. (The bittersweet thing? Now that I'm well enough to go back to get that Ph.D, I can no longer afford to. I'm swamped with medical bills and student loan payments which I can no longer defer.)
Labels: Lupus
Monday, May 29, 2006
One day I woke up. . .
It occurred to me recently that I really like being alive.
Now, I realize that doesn't sound like a radical realization. But until fairly recently, the last five or six years probably, I've spent a good deal of my life severely depressed and occassionally suicidal. My memories of Episodes (that's what I call 'em) go back to about...eight or nine, I think. I was petrified of water. There was no reason, I just became, suddenly, horrified of water. I couldn't take a bath, because something was going to happen to me if I got into the water. But I couldn't tell anyone that, so I'd take my radio into the bathroom, drag one of my cats into the room with me, turn the music up loud, fill the bathtub up and lay on the floor crying, petting the cat, because I was so, so very scared. And confused. Logically, I knew, there was nothing going to happen to me if I got into the bathtub. I tried all sorts of things to work around it. I'd make up little rituals, moving all the possible dangers away from the tub. No razors, nothing battery operated, certainly nothing that so much as looked electrical. I even put the soap away, so I didn't fall on it. In the end, there was just a plain, blank tub full of water and I still couldn't get into it. And there was absolutely no reason for it, none. No childhood trauma, no near drowning. I was just suddenly, unexplainable terrified of getting into the bathtub. And I stayed that way for about a year and then, just as unexplainably, it went away. Just one day, gone. I could get in the tub, I could go swimming, whatever I wanted. No problem. And no explaination.
I started getting hung up on certain thoughts, after that. Random things. Like I was obsessed, and terrified, with getting my period. Nothing really strange about a girl worrying about her period, but this wasn't normal. I was so stressed and worried, I'd bargain with God. Not this year, okay? I just can't handle it right now. And...there wasn't anything bad going on in my life. Again, no trauma, no abuse, no nothing. I was just obsessed with...things...with all the things I was doing wrong, with how I wasn't good enough or smart enough or how I was 'sinning' all the time. (See previous post on the Evils of Fundamentalism, if you would.) Again, I couldn't tell anyone any of this. I just knew they'd have reacted badly. Or worst, they'd have been dismissive. It was all in my head, I was just being silly. So it all just kept building. I went through stages. When I got my period, that obsession faded. Then it was things like, oh the music I was listening to was evil and God would punish me for it. Seriously, I thought that. (Admittedly, I had shitty taste as a teenager, but I hardly thing God sends people to hell for that. Otherwise, damn, Hell is gonna be HUGE.) So I'd have to read my Bible every night, a chapter a night, or I was in trouble. Then it got to the point where I couldn't listen to anything but Christian music or I was going to Hell. (Yeah. Try finding decent rock Christian music in the 80s. Uh huh. Little did I realize it then, I was IN hell listening to that stuff.)
Anyway, the point is, I kept having these episodes and they kept getting worse as the years past. And I couldn't tell anyone about them, because in my very religious household, this things Did Not Happen. Regardless of the fact that my mother has a history of depression. Regardless of the fact she's got a lot of the same problems I do. These things Do Not Happen. If my mother had a rough patch, she'd just go to church a bit more often or pray more often. And that seemed to work for her. But it did not for me. (Again, see previous post about how the Fundy church warped my brain.) By the time I was 14, I was full-blown suicidal. I was just too depressed to actually act on it. It's a preverse irony, the disease that made me want to die also saved my life. I was too exhausted from just getting through the day to actually be able to carry out my suicide plans.
And I had them. Oh, did I have them. My father, as all good Southern men, is a hunter. And there are guns all over their home. Unlocked, with bullets right next to them. I know how to handle a gun. Dad made sure of that, since it would be irresponsible to not educate your kids about guns when you've got so many. And there were always pills in the medicine cabinets. Sleeping pills, pain pillls, all kinds of things for whatever illnesses my folks got. Then again, we lived right next to a creek. It wouldn't have been very hard to 'trip' and drown. And growing up on a farm, I could imagine a hundred 'accidents' that could quickly dispatch me. And yet, I was just so very, very, very tired. All I could do was go to school, come home and go to sleep. I couldn't physically DO anything else.
And then, I'd have breaks in the episodes. Sudden, almost complete remissions. One day I'd be so very depressed I wanted to die, the next I'd wake up and feel perilously close to normal. When those breaks came, I'd make myself believe I was better. It had all just been a test and I'd passed, so God was rewarding me. And I'd really believe that, until it started again.
And that was my life, for years. Until I was about 22 and in college. I'd gotten really, really sick and gone to the doctor. Who happened to notice I was depressed and put me on Prozac. I know people malign Prozac, but that damned green pill saved my life. It didn't 'fix' everything (because what was going on wasn't strictly depression), but it kept my head just far enough above the waterline so I didn't feel like I was dying all the time. I still got depressed, but my suicidal phases faded to once a year instead of every three or four months. (Yeah, I was seriously THAT depressed.)
But my physical symptoms increased. And intensified. Until I was ready to die, again. And I started going to doctor after doctor after doctor....who kept telling me I was just depressed and fat and needed to relax. For the next three years, that's what I got. So,I just stopped going to doctors. Just gave up completely.
Until the pain got so bad I couldn't stand it and went to one more doctor. Who finally listened. She listened and she did some tests and it turns out, HEY! I'm wasn't just depressed -- I had a serious, chronic illness that had been uncontrolled for years. It had a name (Lupus) and it had treatment and I wasn't crazy and I wasn't imagining things and yes, I was sick and yes, she believed me.
That was almost six years ago. I started out taking fourteen pills a day and now I'm down to two. If I'm lucky, at my next doctors appointment I'll be able to get down to one. It's taken a lot of time and trial to find a treatment plan that works for me, but I have. There are still rough days. There are still days when this illness kicks my ass. (I haven't gone into details about the physical effects of Lupus. I've got lots of those too. But since it's affecting my neurological system, I've also got an extra handful of the psychological symptoms. My doctors think the disease has been working it's evil magic on me for a very long time, but didn't show any diagnosable symptoms until I was in my 20s.) But even when I'm getting my ass kicked by this damned disease, I don't want to die.
I haven't wanted to die in a very long time. Not since someone listened to me. Not since I found out the name for what's wrong with me. Not since I was able to take back some measure of control. I cannot control this disease, but knowing that it's real, that's it's not a personal, moral failing (which is what I was also made to feel it was before) allows me to take some ownership, some responsbility. I cannot control this disease, but I can control how it makes me act. I cannot control the fact that it makes me feel like I'm physically dying, but I can control whether it makes me actual act to kill myself. I can control if I decide to value my life, pain and all.
And the thing is, I really do. I don't know when I started, but somehow it's occurred to me that I'm a pretty valuable person. Not just valuable, but so incredible strong and brave. You don't survive the interal struggles I have without being strong. You don't look at the future, knowing you have a disease that could decide to royally fuck you up at any moment, and say to yourself "Yeah, that's where I want to be" unless you're brave. It's not the kind of strength or bravery this world puts much value in, but it's real and it lasts. Everytime I get afraid, I stop myself. What, exactly, could be so bad? What could possible scare me? What could possibly hurt me so much I couldn't recover? I'm not a fool. I know there are lots of horrible things that could happen to me. And I don't want them to happen, of course. But if they did...I've spent most of my life fighting myself. No one knows the buttons to push like I do. And if I can survive myself jumping up and down on them for 20 years, I can pretty much handle anything.
Anyway, I realized I like being alive. As crappy as life can be sometimes, it's still way better than the alternative.
Now, I realize that doesn't sound like a radical realization. But until fairly recently, the last five or six years probably, I've spent a good deal of my life severely depressed and occassionally suicidal. My memories of Episodes (that's what I call 'em) go back to about...eight or nine, I think. I was petrified of water. There was no reason, I just became, suddenly, horrified of water. I couldn't take a bath, because something was going to happen to me if I got into the water. But I couldn't tell anyone that, so I'd take my radio into the bathroom, drag one of my cats into the room with me, turn the music up loud, fill the bathtub up and lay on the floor crying, petting the cat, because I was so, so very scared. And confused. Logically, I knew, there was nothing going to happen to me if I got into the bathtub. I tried all sorts of things to work around it. I'd make up little rituals, moving all the possible dangers away from the tub. No razors, nothing battery operated, certainly nothing that so much as looked electrical. I even put the soap away, so I didn't fall on it. In the end, there was just a plain, blank tub full of water and I still couldn't get into it. And there was absolutely no reason for it, none. No childhood trauma, no near drowning. I was just suddenly, unexplainable terrified of getting into the bathtub. And I stayed that way for about a year and then, just as unexplainably, it went away. Just one day, gone. I could get in the tub, I could go swimming, whatever I wanted. No problem. And no explaination.
I started getting hung up on certain thoughts, after that. Random things. Like I was obsessed, and terrified, with getting my period. Nothing really strange about a girl worrying about her period, but this wasn't normal. I was so stressed and worried, I'd bargain with God. Not this year, okay? I just can't handle it right now. And...there wasn't anything bad going on in my life. Again, no trauma, no abuse, no nothing. I was just obsessed with...things...with all the things I was doing wrong, with how I wasn't good enough or smart enough or how I was 'sinning' all the time. (See previous post on the Evils of Fundamentalism, if you would.) Again, I couldn't tell anyone any of this. I just knew they'd have reacted badly. Or worst, they'd have been dismissive. It was all in my head, I was just being silly. So it all just kept building. I went through stages. When I got my period, that obsession faded. Then it was things like, oh the music I was listening to was evil and God would punish me for it. Seriously, I thought that. (Admittedly, I had shitty taste as a teenager, but I hardly thing God sends people to hell for that. Otherwise, damn, Hell is gonna be HUGE.) So I'd have to read my Bible every night, a chapter a night, or I was in trouble. Then it got to the point where I couldn't listen to anything but Christian music or I was going to Hell. (Yeah. Try finding decent rock Christian music in the 80s. Uh huh. Little did I realize it then, I was IN hell listening to that stuff.)
Anyway, the point is, I kept having these episodes and they kept getting worse as the years past. And I couldn't tell anyone about them, because in my very religious household, this things Did Not Happen. Regardless of the fact that my mother has a history of depression. Regardless of the fact she's got a lot of the same problems I do. These things Do Not Happen. If my mother had a rough patch, she'd just go to church a bit more often or pray more often. And that seemed to work for her. But it did not for me. (Again, see previous post about how the Fundy church warped my brain.) By the time I was 14, I was full-blown suicidal. I was just too depressed to actually act on it. It's a preverse irony, the disease that made me want to die also saved my life. I was too exhausted from just getting through the day to actually be able to carry out my suicide plans.
And I had them. Oh, did I have them. My father, as all good Southern men, is a hunter. And there are guns all over their home. Unlocked, with bullets right next to them. I know how to handle a gun. Dad made sure of that, since it would be irresponsible to not educate your kids about guns when you've got so many. And there were always pills in the medicine cabinets. Sleeping pills, pain pillls, all kinds of things for whatever illnesses my folks got. Then again, we lived right next to a creek. It wouldn't have been very hard to 'trip' and drown. And growing up on a farm, I could imagine a hundred 'accidents' that could quickly dispatch me. And yet, I was just so very, very, very tired. All I could do was go to school, come home and go to sleep. I couldn't physically DO anything else.
And then, I'd have breaks in the episodes. Sudden, almost complete remissions. One day I'd be so very depressed I wanted to die, the next I'd wake up and feel perilously close to normal. When those breaks came, I'd make myself believe I was better. It had all just been a test and I'd passed, so God was rewarding me. And I'd really believe that, until it started again.
And that was my life, for years. Until I was about 22 and in college. I'd gotten really, really sick and gone to the doctor. Who happened to notice I was depressed and put me on Prozac. I know people malign Prozac, but that damned green pill saved my life. It didn't 'fix' everything (because what was going on wasn't strictly depression), but it kept my head just far enough above the waterline so I didn't feel like I was dying all the time. I still got depressed, but my suicidal phases faded to once a year instead of every three or four months. (Yeah, I was seriously THAT depressed.)
But my physical symptoms increased. And intensified. Until I was ready to die, again. And I started going to doctor after doctor after doctor....who kept telling me I was just depressed and fat and needed to relax. For the next three years, that's what I got. So,I just stopped going to doctors. Just gave up completely.
Until the pain got so bad I couldn't stand it and went to one more doctor. Who finally listened. She listened and she did some tests and it turns out, HEY! I'm wasn't just depressed -- I had a serious, chronic illness that had been uncontrolled for years. It had a name (Lupus) and it had treatment and I wasn't crazy and I wasn't imagining things and yes, I was sick and yes, she believed me.
That was almost six years ago. I started out taking fourteen pills a day and now I'm down to two. If I'm lucky, at my next doctors appointment I'll be able to get down to one. It's taken a lot of time and trial to find a treatment plan that works for me, but I have. There are still rough days. There are still days when this illness kicks my ass. (I haven't gone into details about the physical effects of Lupus. I've got lots of those too. But since it's affecting my neurological system, I've also got an extra handful of the psychological symptoms. My doctors think the disease has been working it's evil magic on me for a very long time, but didn't show any diagnosable symptoms until I was in my 20s.) But even when I'm getting my ass kicked by this damned disease, I don't want to die.
I haven't wanted to die in a very long time. Not since someone listened to me. Not since I found out the name for what's wrong with me. Not since I was able to take back some measure of control. I cannot control this disease, but knowing that it's real, that's it's not a personal, moral failing (which is what I was also made to feel it was before) allows me to take some ownership, some responsbility. I cannot control this disease, but I can control how it makes me act. I cannot control the fact that it makes me feel like I'm physically dying, but I can control whether it makes me actual act to kill myself. I can control if I decide to value my life, pain and all.
And the thing is, I really do. I don't know when I started, but somehow it's occurred to me that I'm a pretty valuable person. Not just valuable, but so incredible strong and brave. You don't survive the interal struggles I have without being strong. You don't look at the future, knowing you have a disease that could decide to royally fuck you up at any moment, and say to yourself "Yeah, that's where I want to be" unless you're brave. It's not the kind of strength or bravery this world puts much value in, but it's real and it lasts. Everytime I get afraid, I stop myself. What, exactly, could be so bad? What could possible scare me? What could possibly hurt me so much I couldn't recover? I'm not a fool. I know there are lots of horrible things that could happen to me. And I don't want them to happen, of course. But if they did...I've spent most of my life fighting myself. No one knows the buttons to push like I do. And if I can survive myself jumping up and down on them for 20 years, I can pretty much handle anything.
Anyway, I realized I like being alive. As crappy as life can be sometimes, it's still way better than the alternative.
Labels: childhood trauma, depression, Lupus, suicide
