Silver at 25
Twenty-five years marks a silver anniversary. Someone, somewhere, owes me silver. Why? 25 years ago, this week I take, I went to my doctor's office with an ear infection and easy bruising, and I came home with Lupus. Just like that, life at sixteen changed.
In that regard, as I sit here looking at a quarter of a century, more than half my life, and a sentence comparable to manslaughter I can't say I'm nostalgic. I mean years of taking vitamins the size of chicken patties, years of staring down the gremlin bottles on my dresser, years of putting my feet on the floor in the morning and letting out moans and wails, years of endless doctor visits and blood draws, and years of wondering when the next friend will bail on me because the Lupus is too much. That latter part: I called and left a message, the day of a meeting, that I couldn't make it. Seven years later and I remember the spinning room, the adverse drug side effects, the trips to my primary care and the rheumatologist I had back then . . . I remember throwing up that afternoon. I remember that was the last I heard from that friend. If you live with something like Lupus you come to expect the fly-by-night Cathy's as much as you expect to wake up with a new bruise, pain, or ache. It never gets any easier, that is a given.
Last month tried to burn me down, as I found myself in the ER four times--in two different cities--and in the course of the past year I've spent more time under CT scans and Xray machines that I legit have to wonder if I am about to hit critical mass and be turned away from passing through a TSA scanner. In the middle of those scans, blood draws, subway rides with rock music blaring in my ears to drown out my thoughts and the shock of it all the dance with death I had a decade ago has resurfaced. With that being said, I had a fibroid the size of a little league team and cysts riddling my ovaries. I had named it Irma and her brood. As Hurricane Irma pounds Florida, a friend in Miami--or as he calls himself on my FB feed my "favorite gay philosopher"--questions why my uterus and ovaries can take out power and towns. We would prefer they had the power to--ya know--bake cupcakes and cookies. Humor aside, that is the nature of the beast as we say. The unspoken and unwanted nature of it all.
It's no secret that I've written about this unwanted life, as I wrote for a Lupus Magazine years ago, dropped a publication on Lupus Now, and somewhere in there scribbled a few more. Well, more than a few more but you get the drift . . . Writing about this life always takes me to a place. Others enjoy the reads better than I enjoy writing them, and after all of these years, I often feel like another piece is just another redux of what we already know. The pain--physical and emotional--is always there, the number of pills grows--sometimes shrinks--but always stays vigilant, and the unknown carries on like a bad 80s hairdo and early 90s attempt at grunge and emboldened in print from prom photos and scrapbooks. No amount of flooding and catastrophe will erase all the evidence of the Aqua Net years and blue eyeliner.
As life pelts on, and diseases grow stronger with rage, it becomes easy to dwell on the horror of it all. The reactions to drugs, the blood transfusions, the doctors who treated you like a head case to quickly find out you are no head case and have physical, medical ailments, the lovers . . . The lovers who flee because the fear of life with a woman with Lupus is unpleasant and apparently too much to bear. Lupus is now a conversation I have if a second date is going to happen. I figure before I commit your number to my phone I had better bother to see if you aren't going to ghost me or stand me up within a week. A week. Yes, there is only so much a soul can endure.
I've never asked anyone to take care of me, as two men who I let love me and I loved them more than they ever did me made it abundantly clear that "I'm not going to take care of you!" Well, I never asked. I've known--as much now as I did then--that hospital stays, ER visits, and waiting rooms riddled with pain, fear, or both are a matter of me and my resolve. If you were wondering, neither of those were the dude I happened to marry. He, he made it clear--quickly into our marriage--that when I was down with a cold, the flu, Lupus, or some modern version of the bubonic plague in his eyes there was nothing wrong with me and his paper cut would be of greater concern. Hence, I only bother to tell people I'm dating--or whatever that means--about the Lupus so that two months in I'm not standing there in the shock of it all. I never tell them the details, I just tell them that I press on and live a life with Lupus in my sidecar. I would rather not have to stand in the shocks of life, but if I must I would rather it be for a resounding case of cellulitis like I awoke to last month while traveling than for someone knocking me over as he exits stage left. The friendships also flee as they do too, but you get the drift.
It's a continual cycle, one that never ends, and unlike articles I publish and books I send to press I don't celebrate this Lupus life. It's a life so riddled with bullet holes that bandaids and stitches can't even begin to cover the carnage. Instead, I just have to press on. The drugs, like the recent round of methotrexate, sometimes work, and then--like now--wait four months to say "Hey, you're feeling better? Wait. Hold my beer and watch this." You wake up flat on your back staring at the passing sky thinking "Yeah, this is my life."
There really is no shiny bauble to buy for that. Though the female in me who is attracted to shiny things, Pandora bangles, and rather expensive handbags and shoes wants to say that maybe the evil eye bracelet from Alex and Ani would be a lovely bauble to layer with beaded bangles I bought upstate to remind myself that 25 years passed in the blink of an eye. Or maybe another Tiffany ring, as the one I have (an interlocking one) came on the last Christmas with the dude I divorced. One band needs to be repaired, as it broke on the train from Berlin to Warsaw, shortly after I lost one of the Tiffany hopes he had given me a week before I walked out. I lost that hoop on the steps of the Vienna City Hall. Fitting it happened on a the two-week excursion after I left him, my apartment, and a life that never manifested. Yet, maybe a Tiffany locket would sparkle and ease the torrent of lost hopes and fears, and those that manifest that we can't even bring to words. Or maybe . . .
Maybe it just means that I've held on for 25 years never knowing what is coming next, who I will wake up with in my life, what doctor will take me seriously of if I'll have one shrug me off and say "maybe this is just being overweight, 40, and with Lupus" when it all comes back to the fact that long ago my body let me down and the Lupus is raging but folks like him ignored it like I did. Maybe it's the doctor that does pay attention and notes that there is an inflammation, making it record that it is not me after all.
That is what 25 years is. That right there. The fight, the struggle, the being heard. The moments when you know it is not you, after all.
In that regard, as I sit here looking at a quarter of a century, more than half my life, and a sentence comparable to manslaughter I can't say I'm nostalgic. I mean years of taking vitamins the size of chicken patties, years of staring down the gremlin bottles on my dresser, years of putting my feet on the floor in the morning and letting out moans and wails, years of endless doctor visits and blood draws, and years of wondering when the next friend will bail on me because the Lupus is too much. That latter part: I called and left a message, the day of a meeting, that I couldn't make it. Seven years later and I remember the spinning room, the adverse drug side effects, the trips to my primary care and the rheumatologist I had back then . . . I remember throwing up that afternoon. I remember that was the last I heard from that friend. If you live with something like Lupus you come to expect the fly-by-night Cathy's as much as you expect to wake up with a new bruise, pain, or ache. It never gets any easier, that is a given.
Last month tried to burn me down, as I found myself in the ER four times--in two different cities--and in the course of the past year I've spent more time under CT scans and Xray machines that I legit have to wonder if I am about to hit critical mass and be turned away from passing through a TSA scanner. In the middle of those scans, blood draws, subway rides with rock music blaring in my ears to drown out my thoughts and the shock of it all the dance with death I had a decade ago has resurfaced. With that being said, I had a fibroid the size of a little league team and cysts riddling my ovaries. I had named it Irma and her brood. As Hurricane Irma pounds Florida, a friend in Miami--or as he calls himself on my FB feed my "favorite gay philosopher"--questions why my uterus and ovaries can take out power and towns. We would prefer they had the power to--ya know--bake cupcakes and cookies. Humor aside, that is the nature of the beast as we say. The unspoken and unwanted nature of it all.
It's no secret that I've written about this unwanted life, as I wrote for a Lupus Magazine years ago, dropped a publication on Lupus Now, and somewhere in there scribbled a few more. Well, more than a few more but you get the drift . . . Writing about this life always takes me to a place. Others enjoy the reads better than I enjoy writing them, and after all of these years, I often feel like another piece is just another redux of what we already know. The pain--physical and emotional--is always there, the number of pills grows--sometimes shrinks--but always stays vigilant, and the unknown carries on like a bad 80s hairdo and early 90s attempt at grunge and emboldened in print from prom photos and scrapbooks. No amount of flooding and catastrophe will erase all the evidence of the Aqua Net years and blue eyeliner.
As life pelts on, and diseases grow stronger with rage, it becomes easy to dwell on the horror of it all. The reactions to drugs, the blood transfusions, the doctors who treated you like a head case to quickly find out you are no head case and have physical, medical ailments, the lovers . . . The lovers who flee because the fear of life with a woman with Lupus is unpleasant and apparently too much to bear. Lupus is now a conversation I have if a second date is going to happen. I figure before I commit your number to my phone I had better bother to see if you aren't going to ghost me or stand me up within a week. A week. Yes, there is only so much a soul can endure.
I've never asked anyone to take care of me, as two men who I let love me and I loved them more than they ever did me made it abundantly clear that "I'm not going to take care of you!" Well, I never asked. I've known--as much now as I did then--that hospital stays, ER visits, and waiting rooms riddled with pain, fear, or both are a matter of me and my resolve. If you were wondering, neither of those were the dude I happened to marry. He, he made it clear--quickly into our marriage--that when I was down with a cold, the flu, Lupus, or some modern version of the bubonic plague in his eyes there was nothing wrong with me and his paper cut would be of greater concern. Hence, I only bother to tell people I'm dating--or whatever that means--about the Lupus so that two months in I'm not standing there in the shock of it all. I never tell them the details, I just tell them that I press on and live a life with Lupus in my sidecar. I would rather not have to stand in the shocks of life, but if I must I would rather it be for a resounding case of cellulitis like I awoke to last month while traveling than for someone knocking me over as he exits stage left. The friendships also flee as they do too, but you get the drift.
It's a continual cycle, one that never ends, and unlike articles I publish and books I send to press I don't celebrate this Lupus life. It's a life so riddled with bullet holes that bandaids and stitches can't even begin to cover the carnage. Instead, I just have to press on. The drugs, like the recent round of methotrexate, sometimes work, and then--like now--wait four months to say "Hey, you're feeling better? Wait. Hold my beer and watch this." You wake up flat on your back staring at the passing sky thinking "Yeah, this is my life."
There really is no shiny bauble to buy for that. Though the female in me who is attracted to shiny things, Pandora bangles, and rather expensive handbags and shoes wants to say that maybe the evil eye bracelet from Alex and Ani would be a lovely bauble to layer with beaded bangles I bought upstate to remind myself that 25 years passed in the blink of an eye. Or maybe another Tiffany ring, as the one I have (an interlocking one) came on the last Christmas with the dude I divorced. One band needs to be repaired, as it broke on the train from Berlin to Warsaw, shortly after I lost one of the Tiffany hopes he had given me a week before I walked out. I lost that hoop on the steps of the Vienna City Hall. Fitting it happened on a the two-week excursion after I left him, my apartment, and a life that never manifested. Yet, maybe a Tiffany locket would sparkle and ease the torrent of lost hopes and fears, and those that manifest that we can't even bring to words. Or maybe . . .
Maybe it just means that I've held on for 25 years never knowing what is coming next, who I will wake up with in my life, what doctor will take me seriously of if I'll have one shrug me off and say "maybe this is just being overweight, 40, and with Lupus" when it all comes back to the fact that long ago my body let me down and the Lupus is raging but folks like him ignored it like I did. Maybe it's the doctor that does pay attention and notes that there is an inflammation, making it record that it is not me after all.
That is what 25 years is. That right there. The fight, the struggle, the being heard. The moments when you know it is not you, after all.
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