I started this week as someone with fibromyalgia who had a date on Saturday. I'm ending the week as someone who may not have fibromyalgia after all but instead a rare seizure disorder, and someone who does not have a date on Saturday because her upstairs neighbor stood her up. How do we ever define ourselves when the definitions get pulled out from under us? I've always lived me life not being able to be pinned down -- in my education, race, family situation, etc. But sometimes you really want definitions. Definitions can be grounding and liberating at the same time.
Last night my roommate, who often mispronounces words, said inVALid when she meant INvalid. This simple mistake brought to light in a tangible way the way that invalids can be negated, invalidated, and cease to exist because they do not contribute society in the same ways as others. Invalids are invalidated in their quest to be a fully functioning member of the world. They are invalidated by their lack of economic gain, by their inability to function as an independent adult, and by the way they have to come at things in a different manner from those around them.
I'm writing this blog not because I'm seeking a pity party, but because if I don't write right here and right now I feel like I might just cease to exist. No, I have no desire to kill myself and that's not what I mean, but I fear sometimes that my mouth will just close up, and the only way to keep it open is to keep my hands pouring out my thoughts and making poetry on the page. Or at least good prose.
"O" came to the door today forgetting that we had a "date" tomorrow and rescheduling it for some unspecified time in the future. He refused to come in, said he couldn't make the date because he was picking up a piece of furniture while forgetting we had talked about said furniture enthusiastically a few days before, and I'm left knowing that he doesn't desire more than friendship, just like every other man who looks at me with those "you're wonderful" eyes. I am so good at reading others that I can't understand how I so frequently misread them when it comes to matters of my own heart. I feel that I can never say with certainty that someone is interested even when time and time again I am certain that they are.
This might not have come as such a low blow if I wasn't already feeling a sense of "bodylessness" and "personlessness" on account of my neurologist telling me that his diagnosis of fibromyalgia three years ago may have in fact been wrong. While his new guess of a rare form of seizure disorder seems like a much more appropriate explanation for my motor/sensory issues, I've lived the past three years of my life thinking I had one thing and I'm now being told that I may never have had it and may have something else instead. While a seizure disorder diagnosis actually comes as a breath of fresh air, I don't know what to do with all my writing that has been centered around my identity as someone with fibromyalgia. My personal and academic life are defined by my liminal existence in the black and white binary -- being too black to be white and too white to be black. As I've read up on fibromyalgia and conversed with others who have the disorder, I'm finding that the liminal space exists in my medical life as well. I'm too close to a diagnosis of fibromyalgia to be considered healthy, and I'm too far from a diagnosis of fibromyalgia to be considered one who has the disorder. Instead I am left in a purgatory of sorts where I am not sick by name and not well, not black but not white, and not unloved but not loved romantically.
If this post sounds self-deprecating I can attribute it to the fact that I now have to take my anti-convulsant whenever I feel a flareup coming on, which often carries a specific side effect unofficially called "Keppra-rage." I can also attribute it to the fact that I got a face wax for tomorrow, I didn't go to the Tulip Festival to be well for tomorrow, and I've been cleaning my house to make it presentable for O tomorrow, and now all I can do is change into PJ's and count this guy's attention as another misunderstanding... Or perhaps my gay-dar was right on after all.
Friday, April 30, 2010
Wednesday, April 28, 2010
The man upstairs
Last week my roommate and I took unwanted groceries to our upstairs neighbor, O. After declining said groceries (he still had some from our previous drop off) he offered us a glass of wine. My roommate had just finished a 14-hour shift on 3 hours of sleep so she declined, but I said yes. As he started pouring I looked down at my pajama attire that I hadn't changed out of since the night before, covering up my unwashed body. "Hold on 5 minutes," I said as I ran back downstairs, rubbed my upper body with a clean wash cloth, applied good smelling deodorant, put on pants and a shirt, and ran back up, albeit still in my slippers. What commenced was a 3-hour long conversation so long and light like I hadn't had since I met T, the man who put my novel behind a glass case.
I met O the first day I moved in as he introduced himself to my aunt, uncle and me as we stood sweaty on the staircase with furniture and boxes. He looked at me with those "you're wonderful and amazing" eyes, and since he knew nothing about me I mistakenly mistook his enthusiasm for that of a gay man knowing that he has just met a kindred spirit in the minority department. After four months, in which he came to our game night (with me being sweaty after a shower and cooking), helped me put together my bed (with me being sweaty in pj's as I wrestled with the mattresses), and exchanged humorous emails with me in facebook (no sweat there!), it turns out that he is not in fact gay. Now, I can't be sure that these admiring looks he gives me have more than platonic undertones, but if they don't I'm doomed to never be looked at that way by a man who actually wants to "go steady." I'm sure I'll find out more after our date on Saturday where my roommate says she will laugh her head off at home while she pictures me golfing on an early morning in preppy clothes. But then again, I may be black but I've always been preppy. And, I've always wanted to golf.
While I like O for many reasons, one thing that works tremendously in his favor is that I don't have to worry about how to see him. As long as I can take a shower and put on perfume, I'm set. If I get in a flareup I can come back downstairs. If we go out like we are on Saturday he doesn't have to drop me off anywhere before coming back to his own house. Things are still up in the air with D, but I love O's grounded existence mixed with light humor, his closeness in age to my own, and the way, even though he is a Republican who is somewhat obsessed with sports, he makes me feel like I'm wonderful just the way I am.
I met O the first day I moved in as he introduced himself to my aunt, uncle and me as we stood sweaty on the staircase with furniture and boxes. He looked at me with those "you're wonderful and amazing" eyes, and since he knew nothing about me I mistakenly mistook his enthusiasm for that of a gay man knowing that he has just met a kindred spirit in the minority department. After four months, in which he came to our game night (with me being sweaty after a shower and cooking), helped me put together my bed (with me being sweaty in pj's as I wrestled with the mattresses), and exchanged humorous emails with me in facebook (no sweat there!), it turns out that he is not in fact gay. Now, I can't be sure that these admiring looks he gives me have more than platonic undertones, but if they don't I'm doomed to never be looked at that way by a man who actually wants to "go steady." I'm sure I'll find out more after our date on Saturday where my roommate says she will laugh her head off at home while she pictures me golfing on an early morning in preppy clothes. But then again, I may be black but I've always been preppy. And, I've always wanted to golf.
While I like O for many reasons, one thing that works tremendously in his favor is that I don't have to worry about how to see him. As long as I can take a shower and put on perfume, I'm set. If I get in a flareup I can come back downstairs. If we go out like we are on Saturday he doesn't have to drop me off anywhere before coming back to his own house. Things are still up in the air with D, but I love O's grounded existence mixed with light humor, his closeness in age to my own, and the way, even though he is a Republican who is somewhat obsessed with sports, he makes me feel like I'm wonderful just the way I am.
It's an uphill climb
A couple weeks ago I tried to exercise in the condo complex's gym. I had been there a few times before, but making the trek up a somewhat steep incline in order to use the only machine I can, and limiting myself to daylight hours when I sleep twelve and am up in the early afternoon, led to a somewhat difficult exercise schedule. On this particular day I woke up "early" and walked to the gym three times in three hours only to find someone on the treadmill each time. On my fourth trek over the gym was finally empty, but my key failed to work for some inexplicable reason. I came home in a tizzy and bought a compact treadmill on Amazon. Turns out, it might not have been the best idea.
My goal with all of this is to work my legs and stay in shape. Walking is always said to be the best exercise for fibromyalgia sufferers. If I could walk at all hours of the day I would, but living in the rainy Pacific Northwest, and being somewhere where you don't feel completely safe walking by yourself at night, makes getting consistent walking into each day difficult. Hence, the treadmill.
Turns out that I have only been able to use the treadmill two or three times in the two weeks that I've had it. This isn't due to time restraints but because my legs must be feeling 100% in order to walk on something that moves without my moving it. Really, I should have known. Somehow I thought it would be a good replacement for the exercise bike I had on the East coast, but that little variation between walking on something that moves on its own and pushing pedals to move something that doesn't makes all the difference in whether I can use the equipment or not. This inability to use something that moves on its own translates as well to wheelchairs and cars. Sure, in a wheelchair you push a button and in a car you push a pedal, but my brain doesn't understand that I am actually in control of the machine. Instead it only lets me move when I am doing the moving. This is ironically especially true in flareups when I can barely move at all. Hence, I trudge up steps instead of taking elevators. I carry a shopping basket instead of pushing a cart because moving something with my arms and not my legs doesn't count to my befuddled brain.
Fortunately I am good at reselling items for a fractional monetary difference of what I purchased them for. Now the question is, do I get an exercise bike at 1/4 the price of the treadmill and go back to that form of exercise, or do I trust my legs to get me through a summer of walking now that the weather is getting nicer and the days are lasting longer? I'm thinking the latter. Bring on the sun.
My goal with all of this is to work my legs and stay in shape. Walking is always said to be the best exercise for fibromyalgia sufferers. If I could walk at all hours of the day I would, but living in the rainy Pacific Northwest, and being somewhere where you don't feel completely safe walking by yourself at night, makes getting consistent walking into each day difficult. Hence, the treadmill.
Turns out that I have only been able to use the treadmill two or three times in the two weeks that I've had it. This isn't due to time restraints but because my legs must be feeling 100% in order to walk on something that moves without my moving it. Really, I should have known. Somehow I thought it would be a good replacement for the exercise bike I had on the East coast, but that little variation between walking on something that moves on its own and pushing pedals to move something that doesn't makes all the difference in whether I can use the equipment or not. This inability to use something that moves on its own translates as well to wheelchairs and cars. Sure, in a wheelchair you push a button and in a car you push a pedal, but my brain doesn't understand that I am actually in control of the machine. Instead it only lets me move when I am doing the moving. This is ironically especially true in flareups when I can barely move at all. Hence, I trudge up steps instead of taking elevators. I carry a shopping basket instead of pushing a cart because moving something with my arms and not my legs doesn't count to my befuddled brain.
Fortunately I am good at reselling items for a fractional monetary difference of what I purchased them for. Now the question is, do I get an exercise bike at 1/4 the price of the treadmill and go back to that form of exercise, or do I trust my legs to get me through a summer of walking now that the weather is getting nicer and the days are lasting longer? I'm thinking the latter. Bring on the sun.
Thursday, April 22, 2010
Shopaholic takes fibromyalgia
While this blog is dedicated to finding love with a man, this particular entry will be about my other love -- shopping. As stated in my previous post, I am soon embarking on a quest for disability benefits as I'm realizing I'm too frequently unwell to hold a job. The biggest threat this poses to my personhood is my undying quest for both personal space and personal possessions.
I'd like to say it all started with my stepdad who brought home clothes he found in the park. With my dad's own disability insurance which translated into social security benefits for me, I bought fake Keds at Walgreens because I couldn't afford the real ones. Sophomore year my favorite teacher gave me a coat she never wore because I didn't have one. One the walk home, classmates yelled torturous comments to me as I carried a bag with a label they knew I could not afford -- and quite possibly one that was completely out of style for a teenager. For high school graduation one of my best friend's moms bought me and one of my other best friends our first pair of new jeans. Well, first new pair in as long as I could remember. After a few years of wearing my step-aunt's hand-me-downs, I was ecstatic to learn what size I really was and to get jeans that weren't about to fall off.
My clothes spending stayed pretty on target after I moved out and got my first job. I shopped Mervyn's mostly, then moved up to Old Navy once I got married. My husband and I had a budget we drew up with care and every month I had a certain amount allotted on clothes. While my husband was generous with this sum ($50 or $80 a month), I felt stifled, especially as I had re-entered the full-time working world and had to dress the part. The stifling feeling also came from having a man ultimately in charge of my wardrobe or lack thereof, reminiscent of my stepdad and his free treasures. But the biggest problem, you see, is that money burns a hole in my pocket. When I have it I spend it because I'm afraid it's going to go away and that I'll never have it again. Vicious cycle, I know.
When I got divorced I applied for my first credit card and bought myself a bathing suit. It felt liberating. Of course it was about three or four months before I had a job, but the bathing suit was "all mine" and no one told me if I was allowed to spend money on it or not. Years of pent-up money woes released themselves in an extreme desire to reinvent myself through cloth. I buy clothes to define myself. I dress myself the way I want to be seen. Now, contrary to most with this mindset, I don't desire to dress "rich." Rather, I bargain shop, applauding myself at every sale price and deal. I won't spend more than $25 on a shirt except in rare occasions, and if I spend $300 on a pair of boots I wear them every day for 5 months each winter season until they fall apart. Does my spending make me a shopaholic or does my frugality make me a smart consumer? I'm betting it's a mixture of both.
Sometimes I'll go on a hunt for the perfect something-or-0ther and search stores and online websites for hours. Sometimes I find what I'm looking for, other times I don't. The first instance I remember this happening, it was the year 2000 and I was searching for this surfer girl shirt I had in my mind -- blue with a green and yellow floral design across the top. To my surprise I happened upon the exact shirt in Pacific Wave Surf Shop and bought it. It was as if the shirt were calling to me and I had to search it out. More often than not I find the clothes I'm looking for when I don't look for them at all. While outlet shopping with my roommate last month, I came across the rain trench I had been looking for for about a year after seeing it on a woman at the bank in Manhattan. As I said earlier, I won't pay for something that's beyond what I deem a reasonable price even if it's the perfect item of clothing, so I didn't break the bank when I bought it 40% off at Tommy Hilfiger. This past winter I needed to replace my boots and searched for hours and days for the perfect pair. After having no luck and buying a pair to tide me over, a month ago I found that perfect pair on a clearance rack at Macy's and bought them for $33. Because I believe clothes call to you, search for you, and because I feel that they exude your personhood in a totally tangible way, when I find the perfect item of clothing I don't like to let it pass me by.
A couple weeks ago I was looking at a JC Penney's catalog and pretending that I had to be restricted to only their clothing. It was a fun game and I saw that I wouldn't be completely horribly dressed if I had to shop there, albeit it would be very hard to avoid an acrylic wardrobe which would look old and ratty in a matter of weeks. My dresser and closet are by no means stuffed with clothes, but I make quick turnarounds with items I never wear or that have gone out of style, and I always search for items that will stand the test of time. This is compounded and disrupted by my fluctuating weight caused by fibromyalgia medications. I have to continually redress my body to fit what it looks like at a particular moment. Mostly this means getting bigger and bigger sizes and keeping one size smaller on hand for when I lose a few pounds. Having an extended stomach makes me even more clothes conscious as I try to hide my fat in a way that I couldn't do with my former polo shirt obsession (aka rut).
If I apply for disability and get it I don't know what that's going to mean for my shopping habit. Will I become the girl I was in high school -- the shy insecure girl who hid behind ill-fitting clothes? Will I have to go back to buying knockoffs from Payless Shoe Source? (Notice I didn't even say Walgreen's.) If I wasn't ill at all I would become a personal shopper -- not only can I dress myself but I am an expert at dressing others. As it is I look in my closet and in my dresser drawers, and I know that in a month, after re-losing weight, my new mid-rise jeans won't fit anymore and I won't want to go back to the low-rise pairs a size smaller, having discovered that mid-rise better hides my stomach. But what will this mean? More money spent on clothes.
I'm a frugalista, a fashionista, and a shopaholic all rolled into one. I hold onto tangible items as a girl who existed inside her own bedroom and had control over only that sphere. My possessions carried me through childhood moves and tumultuous living situations. My hundreds of books (mostly from used book stores -- bargains!) hug me with shared experience. My laptop opens its world to me and enables me to write my own destiny. My camera captures my world for an eternity. My cell phone reaches out to loved ones and I get to decide how frequently I get to send a text. Money can't buy happiness, but having one's own money can buy a sense of security. Now if only the money on my credit cards --which aren't exorbitant except to a family who rarely buys new underwear -- would disappear and give me the freedom that it's purchases afford.
And now I sign off, in a $5 shirt from a street vendor in Boston, the perfect pair of pajama pants from Target (where I now only buy pajamas) and Victoria's Secret slippers that came free with a purchase. My clothes and I say goodnight and hope that they and I will be around to carry me forward in my envisioned chic and classy existence, filled with loveliness and charm.
I'd like to say it all started with my stepdad who brought home clothes he found in the park. With my dad's own disability insurance which translated into social security benefits for me, I bought fake Keds at Walgreens because I couldn't afford the real ones. Sophomore year my favorite teacher gave me a coat she never wore because I didn't have one. One the walk home, classmates yelled torturous comments to me as I carried a bag with a label they knew I could not afford -- and quite possibly one that was completely out of style for a teenager. For high school graduation one of my best friend's moms bought me and one of my other best friends our first pair of new jeans. Well, first new pair in as long as I could remember. After a few years of wearing my step-aunt's hand-me-downs, I was ecstatic to learn what size I really was and to get jeans that weren't about to fall off.
My clothes spending stayed pretty on target after I moved out and got my first job. I shopped Mervyn's mostly, then moved up to Old Navy once I got married. My husband and I had a budget we drew up with care and every month I had a certain amount allotted on clothes. While my husband was generous with this sum ($50 or $80 a month), I felt stifled, especially as I had re-entered the full-time working world and had to dress the part. The stifling feeling also came from having a man ultimately in charge of my wardrobe or lack thereof, reminiscent of my stepdad and his free treasures. But the biggest problem, you see, is that money burns a hole in my pocket. When I have it I spend it because I'm afraid it's going to go away and that I'll never have it again. Vicious cycle, I know.
When I got divorced I applied for my first credit card and bought myself a bathing suit. It felt liberating. Of course it was about three or four months before I had a job, but the bathing suit was "all mine" and no one told me if I was allowed to spend money on it or not. Years of pent-up money woes released themselves in an extreme desire to reinvent myself through cloth. I buy clothes to define myself. I dress myself the way I want to be seen. Now, contrary to most with this mindset, I don't desire to dress "rich." Rather, I bargain shop, applauding myself at every sale price and deal. I won't spend more than $25 on a shirt except in rare occasions, and if I spend $300 on a pair of boots I wear them every day for 5 months each winter season until they fall apart. Does my spending make me a shopaholic or does my frugality make me a smart consumer? I'm betting it's a mixture of both.
Sometimes I'll go on a hunt for the perfect something-or-0ther and search stores and online websites for hours. Sometimes I find what I'm looking for, other times I don't. The first instance I remember this happening, it was the year 2000 and I was searching for this surfer girl shirt I had in my mind -- blue with a green and yellow floral design across the top. To my surprise I happened upon the exact shirt in Pacific Wave Surf Shop and bought it. It was as if the shirt were calling to me and I had to search it out. More often than not I find the clothes I'm looking for when I don't look for them at all. While outlet shopping with my roommate last month, I came across the rain trench I had been looking for for about a year after seeing it on a woman at the bank in Manhattan. As I said earlier, I won't pay for something that's beyond what I deem a reasonable price even if it's the perfect item of clothing, so I didn't break the bank when I bought it 40% off at Tommy Hilfiger. This past winter I needed to replace my boots and searched for hours and days for the perfect pair. After having no luck and buying a pair to tide me over, a month ago I found that perfect pair on a clearance rack at Macy's and bought them for $33. Because I believe clothes call to you, search for you, and because I feel that they exude your personhood in a totally tangible way, when I find the perfect item of clothing I don't like to let it pass me by.
A couple weeks ago I was looking at a JC Penney's catalog and pretending that I had to be restricted to only their clothing. It was a fun game and I saw that I wouldn't be completely horribly dressed if I had to shop there, albeit it would be very hard to avoid an acrylic wardrobe which would look old and ratty in a matter of weeks. My dresser and closet are by no means stuffed with clothes, but I make quick turnarounds with items I never wear or that have gone out of style, and I always search for items that will stand the test of time. This is compounded and disrupted by my fluctuating weight caused by fibromyalgia medications. I have to continually redress my body to fit what it looks like at a particular moment. Mostly this means getting bigger and bigger sizes and keeping one size smaller on hand for when I lose a few pounds. Having an extended stomach makes me even more clothes conscious as I try to hide my fat in a way that I couldn't do with my former polo shirt obsession (aka rut).
If I apply for disability and get it I don't know what that's going to mean for my shopping habit. Will I become the girl I was in high school -- the shy insecure girl who hid behind ill-fitting clothes? Will I have to go back to buying knockoffs from Payless Shoe Source? (Notice I didn't even say Walgreen's.) If I wasn't ill at all I would become a personal shopper -- not only can I dress myself but I am an expert at dressing others. As it is I look in my closet and in my dresser drawers, and I know that in a month, after re-losing weight, my new mid-rise jeans won't fit anymore and I won't want to go back to the low-rise pairs a size smaller, having discovered that mid-rise better hides my stomach. But what will this mean? More money spent on clothes.
I'm a frugalista, a fashionista, and a shopaholic all rolled into one. I hold onto tangible items as a girl who existed inside her own bedroom and had control over only that sphere. My possessions carried me through childhood moves and tumultuous living situations. My hundreds of books (mostly from used book stores -- bargains!) hug me with shared experience. My laptop opens its world to me and enables me to write my own destiny. My camera captures my world for an eternity. My cell phone reaches out to loved ones and I get to decide how frequently I get to send a text. Money can't buy happiness, but having one's own money can buy a sense of security. Now if only the money on my credit cards --which aren't exorbitant except to a family who rarely buys new underwear -- would disappear and give me the freedom that it's purchases afford.
And now I sign off, in a $5 shirt from a street vendor in Boston, the perfect pair of pajama pants from Target (where I now only buy pajamas) and Victoria's Secret slippers that came free with a purchase. My clothes and I say goodnight and hope that they and I will be around to carry me forward in my envisioned chic and classy existence, filled with loveliness and charm.
Monday, April 19, 2010
Write for your life
Sometimes it's really hard not to shout "I have fibromyalgia" from the rooftops. Especially when you've been in and out of "fibro fog" for days and when in them your mind can't focus on anything else because it just plain can't focus on anything. Sometimes you'll run across a good movie or get hooked on a television series, and that will take your mind off your flu-like symptoms and fuzzy head that feels like it's going to explode. Sometimes you'll have a good talk with a friend, or even better, you'll get out of the fog for a few minutes. But for the most part it's just you and It, and the only way to get over It is not not fight It, but just wait for It to pass.
As the months go by and I plod along with my school work and wait for an online teaching job, I become increasingly aware with each fog-induced day that I am in fact ill no matter how hard I try to deny it. I flew all the way across the country in the face of illness to obtain higher education -- but that education was acquired only by mounds and mounds of exceptions being made on my account and my inability to work the way my peers did. Today, with a book in the works but no agent, a screenplay to sell but no buyer, and three job applications with no bites yet, I'm realizing that it may be time to jump back on the disability benefits band wagon.
I tried the wagon about three years ago, before I was diagnosed and when my doctor at the time wanted to diagnose me with somatization, against even his better judgment. Three years later I have a correct and socially acceptable diagnosis, but despite the plethora of pills I take every day I still can't even sit on jury duty because I could get a flareup at any time and would have to leave the room in the middle of the trial. As it is I've had to leave movie theaters, jazz concerts, birthday parties and restaurants -- I can never be anywhere for 8 hours at a time unless it's my own bedroom. I can never get up in the morning, go to a job, sit in a chair, do work, and then go home. What can I do? Write.
Writing is the one thing I can do no matter how awful I feel. As long as I have the strength to press the keys my creative juices stay flowing. I wrote a screenplay in a flareup, I am writing a book in a flareup, and write the majority of these blogs in a flareup. But what happens in between writing and making it a lucrative career? How can I turn the one thing I can do into a paycheck? I have no doubt in my mind that a paycheck will eventually come from my writing, but the question is how to live until that happens. How do I pay my rent? How do I buy groceries? What happens when my last teaching paycheck and tax refund ends and a new teaching job hasn't begun? How can anyone, in these uncertain economic times, make a living for themselves when there is only one thing in the entire world that they are well enough to do?
Therefore, as Kathleen Kelly says (via Joe Fox, via the Godfather), I must go to the mattresses and fight for the accommodation that I hoped I wouldn't need. Well, boyfriend-to-be... What do I tell you when you ask what I do for a living? Lie and pretend I get tons of money from the pro bono book reviews I write? Pretend I've acquired some sort of family inheritance? After all, isn't the first question on a date, "So what do you do?" I'm a person who lives every day fighting for a happy and fulfilled life in the face of an illness. That's what I do, and I do it 100%.
As the months go by and I plod along with my school work and wait for an online teaching job, I become increasingly aware with each fog-induced day that I am in fact ill no matter how hard I try to deny it. I flew all the way across the country in the face of illness to obtain higher education -- but that education was acquired only by mounds and mounds of exceptions being made on my account and my inability to work the way my peers did. Today, with a book in the works but no agent, a screenplay to sell but no buyer, and three job applications with no bites yet, I'm realizing that it may be time to jump back on the disability benefits band wagon.
I tried the wagon about three years ago, before I was diagnosed and when my doctor at the time wanted to diagnose me with somatization, against even his better judgment. Three years later I have a correct and socially acceptable diagnosis, but despite the plethora of pills I take every day I still can't even sit on jury duty because I could get a flareup at any time and would have to leave the room in the middle of the trial. As it is I've had to leave movie theaters, jazz concerts, birthday parties and restaurants -- I can never be anywhere for 8 hours at a time unless it's my own bedroom. I can never get up in the morning, go to a job, sit in a chair, do work, and then go home. What can I do? Write.
Writing is the one thing I can do no matter how awful I feel. As long as I have the strength to press the keys my creative juices stay flowing. I wrote a screenplay in a flareup, I am writing a book in a flareup, and write the majority of these blogs in a flareup. But what happens in between writing and making it a lucrative career? How can I turn the one thing I can do into a paycheck? I have no doubt in my mind that a paycheck will eventually come from my writing, but the question is how to live until that happens. How do I pay my rent? How do I buy groceries? What happens when my last teaching paycheck and tax refund ends and a new teaching job hasn't begun? How can anyone, in these uncertain economic times, make a living for themselves when there is only one thing in the entire world that they are well enough to do?
Therefore, as Kathleen Kelly says (via Joe Fox, via the Godfather), I must go to the mattresses and fight for the accommodation that I hoped I wouldn't need. Well, boyfriend-to-be... What do I tell you when you ask what I do for a living? Lie and pretend I get tons of money from the pro bono book reviews I write? Pretend I've acquired some sort of family inheritance? After all, isn't the first question on a date, "So what do you do?" I'm a person who lives every day fighting for a happy and fulfilled life in the face of an illness. That's what I do, and I do it 100%.
Tuesday, April 13, 2010
Angels and demons
"D" is finishing up his work travels and is on his way back to town. If you don't remember, he's the guy I've met twice and have a maybe-date with when he resettles to the area. (Maybe-date.... What movie is that from? Help me out, girls.) While part of me is excited, part of me is nervous, and part of me knows that with the little bit I know about him it's silly to be either one, a larger part of me is just hoping that I don't end up behind the glass case.
One of my gay boys, my mutual friend to D, assured me that I'm awesome and that things will work out the way they're supposed to. While this is totally reassuring (and while I know he's right about the latter part of his statement), it's not self-esteem that I lack. What I doubt is how D, or the next guy, will react to their impression of my awesomeness.
Most guys beam at me, tell me over and over again how great I am, not because I want them to, but just because it comes gushing from their lips. They expouse my sweetness, my hotness, and my (at the time bad) novel which they put behind a glass case with their special 19th century hard cover classics (which they then study in grad-level literature). They tell professors that I am their favorite contemporary author when questioned in class. They exclaim over my perfect curls, my perfect teeth, my perfect puffy lips, and my great butt. Butttttt, they don't want to date me.
Now, this probably has nothing to do with fibromyalgia. I've attributed it mostly to being a black girl who loves to date white guys and the knowledge that white guys may not always want to date me. I also attribute it to the fact that a majority of my love interests end up being gay, and to frustratingly being labeled the "nice girl" like Tenley on the last Bachelor. (Yes, I watch too much reality TV). "You're perfect," Jake professed to the runner up for the engagement ring, "but there's something missing." "Something" being the daring younger woman who was the professed mean girl of the house. Aside from Gia who opened up too late, I, contrary to popular opinion, did find Vienna to be the best match for Jake. From the couple seasons I've seen, Bachelors usually go for the ones they feel they should like instead of the ones they most want to be with, so I applaud Jake for his choice. But, despite my rooting for Vienna, I cry for Tenley because I know exactly how she feels, and the frustration of Jake feeling she was too "good" for him. It's hard to be considered perfect when you're the one who gets passed by. Tenley shakes her head at Jake's compliment, not wanting to be labeled as something so intangible. Perfect can be isolating, perfect can be frustrating. Perfect can put you behind a glass case.
I do wonder, however, if having fibromyalgia is going make me seem even more perfect (read unattainable) than I did before. Friends and family constantly applaud me on my industriousness and lightheartedness in the face of illness. "I don't know if I could be as strong as you," they say. They think they would be less angelic, and as we all know, angels don't consort with humans. "Tragic mulattas" are always described as angelic as well, as I am realizing in my study of the genre, and sweet and tough straight girls are always angels to the gay men who adore them. While I love being adored and I love the men who adore me, maybe D, as a straight, Asian man who I assume doesn't read 19th century classics, will see me as the human that I am and "open my pages." Sorry, couldn't resist. ;)
One of my gay boys, my mutual friend to D, assured me that I'm awesome and that things will work out the way they're supposed to. While this is totally reassuring (and while I know he's right about the latter part of his statement), it's not self-esteem that I lack. What I doubt is how D, or the next guy, will react to their impression of my awesomeness.
Most guys beam at me, tell me over and over again how great I am, not because I want them to, but just because it comes gushing from their lips. They expouse my sweetness, my hotness, and my (at the time bad) novel which they put behind a glass case with their special 19th century hard cover classics (which they then study in grad-level literature). They tell professors that I am their favorite contemporary author when questioned in class. They exclaim over my perfect curls, my perfect teeth, my perfect puffy lips, and my great butt. Butttttt, they don't want to date me.
Now, this probably has nothing to do with fibromyalgia. I've attributed it mostly to being a black girl who loves to date white guys and the knowledge that white guys may not always want to date me. I also attribute it to the fact that a majority of my love interests end up being gay, and to frustratingly being labeled the "nice girl" like Tenley on the last Bachelor. (Yes, I watch too much reality TV). "You're perfect," Jake professed to the runner up for the engagement ring, "but there's something missing." "Something" being the daring younger woman who was the professed mean girl of the house. Aside from Gia who opened up too late, I, contrary to popular opinion, did find Vienna to be the best match for Jake. From the couple seasons I've seen, Bachelors usually go for the ones they feel they should like instead of the ones they most want to be with, so I applaud Jake for his choice. But, despite my rooting for Vienna, I cry for Tenley because I know exactly how she feels, and the frustration of Jake feeling she was too "good" for him. It's hard to be considered perfect when you're the one who gets passed by. Tenley shakes her head at Jake's compliment, not wanting to be labeled as something so intangible. Perfect can be isolating, perfect can be frustrating. Perfect can put you behind a glass case.
I do wonder, however, if having fibromyalgia is going make me seem even more perfect (read unattainable) than I did before. Friends and family constantly applaud me on my industriousness and lightheartedness in the face of illness. "I don't know if I could be as strong as you," they say. They think they would be less angelic, and as we all know, angels don't consort with humans. "Tragic mulattas" are always described as angelic as well, as I am realizing in my study of the genre, and sweet and tough straight girls are always angels to the gay men who adore them. While I love being adored and I love the men who adore me, maybe D, as a straight, Asian man who I assume doesn't read 19th century classics, will see me as the human that I am and "open my pages." Sorry, couldn't resist. ;)
Friday, April 2, 2010
The nice guy card
Today I let "J" go. This was after three emails, one date, a few texts, and a phone conversation. After marrying someone I tried to make myself love and feel passion for, if the phone rings and I dread talking to the person on the other end of the line, it's time to say goodbye.
This gets harder when you think you should be with someone because the play the nice guy card. My ex was certainly that way. I married him for many reasons: 1) I was a born again Christian at the time and thought he was the one God had for me, 2) His lack of intense emotion was a breath of fresh air after my bipolar and schizophrenic boyfriend who had been my first love, 3) I had a hard childhood and wanted to create a new life for myself. I used my husband to feel complete.
I walked down the aisle wishing the photographer loved me. We had been close friends for years and I had watched him date my two best friends. Watching him flirt with one of them just hours before my wedding, I went ahead with my marriage because I knew that he would never be available to me. I didn't consider the fact that it would be better to wait for someone else that I had as intense feelings for as I did for the photographer. Instead I walked down the aisle hoping that love would grow after we said "I do."
Naturally, the love did not grow. And it turns out the nice guy card didn't work in my favor. The definition of nice guy seemed to be not saying anything when something bothered you but instead being passive aggressive and holding in your anger. It meant insisting on getting the car when your spouse accidentally parked in a tow zone and pretending you weren't annoyed that you had to clean up her "mess." It meant that you were never wrong, and that she should feel lucky to be with you. It meant that you sacrificed your own happiness for hers, in a sort of maryrly way, of your own free will, and did it because it made you feel good about yourself.
When we got divorced I met my best friend -- a gay male. After seven years we have had countless fights, some of them turning into screaming matches and ending in tears and apologies. At first this display of emotion scared me. Later I learned that such fights were normal and even healthy for a relationship, especially if the fighting ends in mutual understanding and support. Since meeting him and being comfortable with him right away, and since my marriage to someone who never fought with me left me so unsatisfied, I take my gut very seriously. If I have any feelings of remorse over this person being the "right" one for me, I break it off. If the person plays the nice guy card, I dismiss them. Now, this does not mean opening doors or paying for a meal. Rather, it means someone who talks down about other men and says how good and sweet they themselves are in comparison. In this case the truth was revealed when J proclaimed that is aunt was a manipulative bitch. Sure, even before I picked up the phone I was ready to hang it up again, but this statement made me know my gut was leading me in the right direction. Men are human, no one is perfect, but it's the ones who think they are perfect that won't own up to their own actions.
I wanted to like J because he didn't mind my fibromyalgia. I wanted to like him because he liked me, and because we shared a lot of the same interests and tastes. I wanted to like him because he took me for a walk around my neighborhood and showed me things I hadn't seen before. But my mom didn't listen to her gut when my stepdad yelled at the salesperson while showing her an engagement ring. Years later that was a big warning sign. Because of her facial deformities, she felt that she didn't deserve love and that her chance of finding it limited. I want someone who doesn't want to save me. I want someone who knows and admits he has a jerky side, and who feels privileged to be with me instead of playing the nice guy card. Because, let's face it, we all have crosses to bear.
This gets harder when you think you should be with someone because the play the nice guy card. My ex was certainly that way. I married him for many reasons: 1) I was a born again Christian at the time and thought he was the one God had for me, 2) His lack of intense emotion was a breath of fresh air after my bipolar and schizophrenic boyfriend who had been my first love, 3) I had a hard childhood and wanted to create a new life for myself. I used my husband to feel complete.
I walked down the aisle wishing the photographer loved me. We had been close friends for years and I had watched him date my two best friends. Watching him flirt with one of them just hours before my wedding, I went ahead with my marriage because I knew that he would never be available to me. I didn't consider the fact that it would be better to wait for someone else that I had as intense feelings for as I did for the photographer. Instead I walked down the aisle hoping that love would grow after we said "I do."
Naturally, the love did not grow. And it turns out the nice guy card didn't work in my favor. The definition of nice guy seemed to be not saying anything when something bothered you but instead being passive aggressive and holding in your anger. It meant insisting on getting the car when your spouse accidentally parked in a tow zone and pretending you weren't annoyed that you had to clean up her "mess." It meant that you were never wrong, and that she should feel lucky to be with you. It meant that you sacrificed your own happiness for hers, in a sort of maryrly way, of your own free will, and did it because it made you feel good about yourself.
When we got divorced I met my best friend -- a gay male. After seven years we have had countless fights, some of them turning into screaming matches and ending in tears and apologies. At first this display of emotion scared me. Later I learned that such fights were normal and even healthy for a relationship, especially if the fighting ends in mutual understanding and support. Since meeting him and being comfortable with him right away, and since my marriage to someone who never fought with me left me so unsatisfied, I take my gut very seriously. If I have any feelings of remorse over this person being the "right" one for me, I break it off. If the person plays the nice guy card, I dismiss them. Now, this does not mean opening doors or paying for a meal. Rather, it means someone who talks down about other men and says how good and sweet they themselves are in comparison. In this case the truth was revealed when J proclaimed that is aunt was a manipulative bitch. Sure, even before I picked up the phone I was ready to hang it up again, but this statement made me know my gut was leading me in the right direction. Men are human, no one is perfect, but it's the ones who think they are perfect that won't own up to their own actions.
I wanted to like J because he didn't mind my fibromyalgia. I wanted to like him because he liked me, and because we shared a lot of the same interests and tastes. I wanted to like him because he took me for a walk around my neighborhood and showed me things I hadn't seen before. But my mom didn't listen to her gut when my stepdad yelled at the salesperson while showing her an engagement ring. Years later that was a big warning sign. Because of her facial deformities, she felt that she didn't deserve love and that her chance of finding it limited. I want someone who doesn't want to save me. I want someone who knows and admits he has a jerky side, and who feels privileged to be with me instead of playing the nice guy card. Because, let's face it, we all have crosses to bear.
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