Sometimes you feel alone, other times . . .
Sometimes this life with Lupus can make you feel alone. Very alone. The days and nights of aches, the unpretty designs on your face, the rashes on every stretch of skin, the intestinal woes, the overwhelming exhaustion where blinking is an effort and keeping the eyes open even more while making sleep impossible . . . the list goes on and on. I wouldn't wish this on my worst enemy, or even my most detestable ex, but understanding is fleeting with this thing dubbed Lupus.
The beautiful disaster that we are makes some of us slinker away with shame and guilt, manage life with a calculated formula of energy exertion and inevitable pain recourse, or attempt to clip the butterfly's wings and fly anyway we can. Others, others use it as a crutch. I'll remain silent, as we all have our battles to fight and reasons for our existence. I, as we already know, do not fall within the predatory lines of pity and self-loathing. Okay, I have self-loathing . . . the size of my ass annoys me, the abs not being where I want them pisses me off, and the state of my karma . . . but those are expected, generic, and even acceptable points of self-loathing. Yet, one resolute remains true. Lupus sucks, to be crass and on point devoid of literary delicacies.
Today, for instance, I stood in front of my mirror and applied not one but three f-ing layers of makeup. Bags under my eyes, after nine hours of sleep, and a painful red wanna-be butterfly splashed across my canvas causing me a moment of angst. Sadly, Lupus patients--even those who have been living with this mysterious beast for more than half their lives--have literal markers to reignite teenage angst like we never outgrew that detestable stage of life. At least my baby blues were devoid of tell-tale vampire veins . . . there is always an upside.
In my early 20s, after a night of ruckus partying and clove cigarette smoking, I'd wake up on the living room floor with my boot as my pillow and a head roar the size of Alaska. I'd say, "well the pain just means I ain't dead."
I'd prefer the pain of a hangover to a life of Lupus. A continual hangover would be preferable to this chaotic hunger for release, understanding, a cure, and . . . normality.
Yet, the normality of Lupus is this. There are others. There are thousands. There are . . . millions. We aren't the most recognized disease. We aren't an overtly rare disease. We certainly are not an obscure disease. Yet, you can feel alone and lost and angstful on the daily basis.
On the 21st I was faced with my feeling of loneliness and somber melancholy with the Lupus Foundation's walk. It is National Lupus Awareness Month after-all. Along New York's South Street Seaport, and the same day the Brooklyn half Marathon poured sleek runners out, scores of folks gathered out to walk for the cause. Folks with Lupus--I presumed I could not be the only one--and scores walking for loved ones. Actually, I was not the only one as many wore tags saying they walk for themselves. I walk for myself with SLE, my Momma with Discoid Lupus, and her sister with Discoid. I walk for the great-Aunt on my father's side who died in 1977 from Leukemia and SLE. I walk so that one day this thing with Lupus will have more than a name. It will have a known beginning and maybe even a known end, something other than what comes with the final passing of a life . . . young or old.
I harassed my friends, young and old. I stopped short of calling them loosers for not having Lupus. In the end, my friends are pretty damned cool as they sent some money to my digital kiosk.They won me an umbrella and a shirt. Thanks guys. We all know that I needed another race/walk shirt, as the fifteen or so I have aren't enough. Actually, race shirts are never enough in number. I dream that when I am 80 I'll have as many as I do books. Okay, that's a lie. My clothing will never be able to catch up with my books. Really. The number is somewhere between 10-20 to 1.
At the walk some stranger noticed my 13.1 on my shoe, of course this occurred after asking (almost apologetically) if I am Lupus patient as the telltale rash was getting slightly pink. We both stunk of sunscreen. She inquired about the 13.1. I think she thought it was a symbol for Lupus that she did not know. I answered that I've ran two half marathons.
There was an uncomfortable silence.
Then . . .she told me in a surly tone that Lupus patients shouldn't exert themselves. She told me that I was too young to understand this. I . . . I told her that "I was sixteen, pulled from soccer practice, the day I learned I have SLE. I was nineteen when I was first hospitalized with a kidney infection because I couldn't convince the doctor to let me stay at home. I was told I would be dead by the time I turned 24. I'm two months shy of 35, and I've had vampire wings* and scores of drugs and indiscretions along the way. There are days when I pray for a quick death, there are days when I bounce with glee, and there are days like today when I ache and would rather stay home but don't because I have things to do. Please don't tell me my life can not be, or that my life is over." With her mouth hanging open, I walked away. I heard her mutter, "She's 35?"
As I looked around I felt a slight smile arise. There were shades of purple as far as the eye could see. For once I didn't feel alone in a see of normalcy. There were others with symptoms like me. There were others with concerns like mine. I heard, in remnants of conversation, that others didn't have health insurance. I heard the all too familiar tales of others talking about how someone can not get disability because Social Security doesn't see an inability to work. My personal favorite was a slightly obnoxious crew discussing this, and then talking about how anyone who is sick should get benefits. I will remain mute on that subject.
Yet, I wasn't alone. The course was a walking one, and since I run but seriously couldn't from my own pain, I walked at Jedi speed in the front. Ha. For once I finished at the front crew. Go me. It only took a little Lupus to get me there. A little Lupus, and passing moments of feeling lost and alone, pays off when you can cross the line with full breathe at the front of the crew.
As I walked across and the volunteer slapped an "I Walked for Lupus" sticker on my shirt others were with me. Others with Lupus, others trying to understand, and others with hope . . . for once I was not completely alone.
*vampire wings = blood transfusion.
The beautiful disaster that we are makes some of us slinker away with shame and guilt, manage life with a calculated formula of energy exertion and inevitable pain recourse, or attempt to clip the butterfly's wings and fly anyway we can. Others, others use it as a crutch. I'll remain silent, as we all have our battles to fight and reasons for our existence. I, as we already know, do not fall within the predatory lines of pity and self-loathing. Okay, I have self-loathing . . . the size of my ass annoys me, the abs not being where I want them pisses me off, and the state of my karma . . . but those are expected, generic, and even acceptable points of self-loathing. Yet, one resolute remains true. Lupus sucks, to be crass and on point devoid of literary delicacies.
Today, for instance, I stood in front of my mirror and applied not one but three f-ing layers of makeup. Bags under my eyes, after nine hours of sleep, and a painful red wanna-be butterfly splashed across my canvas causing me a moment of angst. Sadly, Lupus patients--even those who have been living with this mysterious beast for more than half their lives--have literal markers to reignite teenage angst like we never outgrew that detestable stage of life. At least my baby blues were devoid of tell-tale vampire veins . . . there is always an upside.
In my early 20s, after a night of ruckus partying and clove cigarette smoking, I'd wake up on the living room floor with my boot as my pillow and a head roar the size of Alaska. I'd say, "well the pain just means I ain't dead."
I'd prefer the pain of a hangover to a life of Lupus. A continual hangover would be preferable to this chaotic hunger for release, understanding, a cure, and . . . normality.
Yet, the normality of Lupus is this. There are others. There are thousands. There are . . . millions. We aren't the most recognized disease. We aren't an overtly rare disease. We certainly are not an obscure disease. Yet, you can feel alone and lost and angstful on the daily basis.
On the 21st I was faced with my feeling of loneliness and somber melancholy with the Lupus Foundation's walk. It is National Lupus Awareness Month after-all. Along New York's South Street Seaport, and the same day the Brooklyn half Marathon poured sleek runners out, scores of folks gathered out to walk for the cause. Folks with Lupus--I presumed I could not be the only one--and scores walking for loved ones. Actually, I was not the only one as many wore tags saying they walk for themselves. I walk for myself with SLE, my Momma with Discoid Lupus, and her sister with Discoid. I walk for the great-Aunt on my father's side who died in 1977 from Leukemia and SLE. I walk so that one day this thing with Lupus will have more than a name. It will have a known beginning and maybe even a known end, something other than what comes with the final passing of a life . . . young or old.
(That's a lot of Lupus)
I harassed my friends, young and old. I stopped short of calling them loosers for not having Lupus. In the end, my friends are pretty damned cool as they sent some money to my digital kiosk.They won me an umbrella and a shirt. Thanks guys. We all know that I needed another race/walk shirt, as the fifteen or so I have aren't enough. Actually, race shirts are never enough in number. I dream that when I am 80 I'll have as many as I do books. Okay, that's a lie. My clothing will never be able to catch up with my books. Really. The number is somewhere between 10-20 to 1.
At the walk some stranger noticed my 13.1 on my shoe, of course this occurred after asking (almost apologetically) if I am Lupus patient as the telltale rash was getting slightly pink. We both stunk of sunscreen. She inquired about the 13.1. I think she thought it was a symbol for Lupus that she did not know. I answered that I've ran two half marathons.
There was an uncomfortable silence.
Then . . .she told me in a surly tone that Lupus patients shouldn't exert themselves. She told me that I was too young to understand this. I . . . I told her that "I was sixteen, pulled from soccer practice, the day I learned I have SLE. I was nineteen when I was first hospitalized with a kidney infection because I couldn't convince the doctor to let me stay at home. I was told I would be dead by the time I turned 24. I'm two months shy of 35, and I've had vampire wings* and scores of drugs and indiscretions along the way. There are days when I pray for a quick death, there are days when I bounce with glee, and there are days like today when I ache and would rather stay home but don't because I have things to do. Please don't tell me my life can not be, or that my life is over." With her mouth hanging open, I walked away. I heard her mutter, "She's 35?"
As I looked around I felt a slight smile arise. There were shades of purple as far as the eye could see. For once I didn't feel alone in a see of normalcy. There were others with symptoms like me. There were others with concerns like mine. I heard, in remnants of conversation, that others didn't have health insurance. I heard the all too familiar tales of others talking about how someone can not get disability because Social Security doesn't see an inability to work. My personal favorite was a slightly obnoxious crew discussing this, and then talking about how anyone who is sick should get benefits. I will remain mute on that subject.
Yet, I wasn't alone. The course was a walking one, and since I run but seriously couldn't from my own pain, I walked at Jedi speed in the front. Ha. For once I finished at the front crew. Go me. It only took a little Lupus to get me there. A little Lupus, and passing moments of feeling lost and alone, pays off when you can cross the line with full breathe at the front of the crew.
As I walked across and the volunteer slapped an "I Walked for Lupus" sticker on my shirt others were with me. Others with Lupus, others trying to understand, and others with hope . . . for once I was not completely alone.
(Look close: the front met the middle)
*vampire wings = blood transfusion.
Comments