I’ve been awake now for a solid twenty-four hours.  Years ago, I was no stranger to this, but my life has changed.  I’m so much healthier now, in so many ways, that trying to describe them all would probably take hours.  These days, a twenty-four hour stint would generally take a huge toll on me, but I think there will be an exception to the rule in this case.  I’m only just now starting to wind down, and will sleep as soon as I manage to find all the words I need to write.

Happiness has eluded me for much of my life.  I don’t mean that in a cloying, pitying way, but as a simple fact.  True, I was happy as a child, but as soon as adolescence hit, my mental, emotional, and physical selves crumbled.  Most people recover from puberty; I wasn’t one of those people.  I don’t mean in the, “Oh, kids are so mean to each other” way, but in the sense that I either developed or began to show the signs of six separate serious chronic illnesses at that time.  By age thirteen I had narcolepsy, bipolar, post-viral syndrome/myalgic encephalomyelitis, fibromyalgia, poly-cystic ovarian disease and Raynaud’s — I just didn’t know it, and wouldn’t know it for almost a decade.   (I had adult onset of Sjögren’s, bone spurs on my coccyx, muscle deterioration of unknown cause in my left knee, sciatica, coccydynia, piriformis syndrome,  and if I ask my doctors I’m sure they’d remember quite a few I’m blanking on in my sleep deprived state.)  As an adolescent, not only was my mental health under the pressure of freshly awakening bipolar, but I had been molested at the age of eleven by a friend of a friend and repressed the emotions around the incident.  That lead to me developing a variety of delightful psychological defenses, beginning with panic attacks and social phobia and eventually leading to full on agoraphobia.  At the age of fifteen, I was finally kicked out of school.  I essentially hid from most of the world, barring a few people I met through the internet, until the age of twenty, when I was finally properly diagnosed with bipolar.  At twenty-one I was diagnosed with the cusp of the physical conditions, which lead to the beginning of treatment.  Full treatment.  I went out into the world as a physical 21-year-old woman, but I had the social skills of a thirteen-year-old.  Six months or so after diagnosis, I began dating a guy nineteen years older than I was; within another six months, we were living together.  We were together 3 1/2 years.  Sometimes during those years, I thought I was happy, but eventually I realized it was only a shade of happiness, a glimpse of potential — and it wasn’t going to get better.  So I turned my life upside down: decided not to return to Australia, left him, became homeless, and started from scratch.  That was in September 2005.  It’s taken me almost five years, but I now no longer live in the shade.

I am happy.

In the past five years, I have had some amazing high points on the happiness scale.  I never thought I would say this before I did it, but getting married (all three times) to Matt were three of the happiest days I’ve had since 2005.  Today (yesterday), June 4th, 2010, is another one.

I truly believe that nothing can be completely appreciated unless the opposite has been experienced.  I have been so full of hopelessness that I’ve made a couple serious suicide attempts.  I’ve purposefully walked away from everything in my life, and I’ve unwittingly had it all torn away.  I can sing the muthafuckin’ blues; I’ve got rights to them.  But I don’t want them anymore, don’t need them anymore.  I’m on the opposite side now.  I’m a freakin’ one woman Aqua musical revival, and I love it.

I’ve got such bad logorrhoea right now that I can’t even get to the point, haven’t even begun where I wanted to start.  I wanted to write about my day, not about my life.  Paraphrasing Margaret Atwood, context is everything.  I can’t appreciate where I am now without knowing where I’ve been.

Right now, I’m lying on the floor in the basement of our little house on the hill.  I watched the sun rise.  I just got home from work.  I’ve been on fire all day, life source fire, and people around me can tell.  I looked like shit — no makeup, skin broken out, hair flattened and frizzy, bruises all over my legs — just completely washed out, tired from a long day like I should have been.  But I guess — okay, no, I admit, I know I appeared to look incredibly fucking hot, because I shone.  And I’ve never in my life been hit on respectfully so many times in one night.  It’s incredible how different life can be when I’m actually happy to be alive… people treat me better, maybe because I’m treating them better.  Maybe a lot of things.  But it seems to command a certain respect that I could certainly get used to.  But that’s a tangent better explored another time, in some other thesis.

Let me just get to the damn point already, because after an hour of this, I’m actually actively tired. (Which is a shame, because I want to write about the symphony of birds I hear every morning, the lusty smell of my dew-covered garden, and so much more.)

After eight years of the medical community affirming that I do indeed have conditions that cause chronic pain and eight years of trying every other fucking treatment under the sun (Paula Kamen of “All In My Head” ain’t tried a damn thing I haven’t), not to mention denial, self-medicating with alcohol, hiding in bed as a permanent solution, and the overuse of opiates, I finally got up the nerve/broke down and got referred to a pain clinic.

Ladies and gentlemen, they’re going to fix me.  The biggest part wrong with me, anyway, which is the constant pain in my ass.  They’re going to put me under sedation and inject one of those amazing slow release super-drugs into my sciatic nerve.  I’ll essentially never have to feel the godforsaken thing ever again.  ”Youse free, Missy Scarlett, youse free!”

I don’t expect anyone to truly understand how momentous this is for me.  The pain is going to go away?  That’s like telling me I’m going to get a third eye, or a penis.  I just have no concept whatsoever as to what life without pain is!  What do you do with it?  What is it like?  I’ve seen other people go about their business and it looks intriguing;  might I now have a shot at this wonderland?  I mean, maybe I could leave the house without bringing topical analgesics that make me “smell like old people,” and cause my co-workers to run away from me for fear I might literally rub off on them.  Perhaps I could take my dogs for a walk.  Oh, bigger things?  Maybe I could ride a bicycle for the first time since childhood!  Oooh, wait for it — here’s the big one!  It might even enable me to sit through classes long enough to finish my AA, let alone get a degree!  And then, well, shit, son, maybe I could have one of those, whaddyacallem? — gainful employment things!

Realize, please, that when I say pain, I’m not just saying ouch.  I know Everybody Hurts and achy boo-boos and work soreness and all that.  I get it.  But please understand that the kind of pain I deal with on a daily basis is so deep within my body and so widespread, that my skin can be sliced to shreds and I barely flinch in comparison.  This isn’t an exaggeration.  I spent three hours on the table getting tattooed today; it’s the beginning of only my second tattoo (poverty will do that to a girl).  I nodded in and out of consciousness for most of it, able to semi-sleep while the artist worked on my arm.  Everyone in the shop said I sat really well and that they were impressed by it.  I honestly don’t know what was impressive, because I’ve never watched someone else get a tattoo for more than a few minutes at a time.  All I know is that while the needle was continually piercing just a tiny few layers of skin on my arm, deep inside my left buttock sat a ball of volcanic fire, occasionally spilling down my legs or reaching up into my back like heartburn.  That’s the pain I know.  It’s kind of like having a really intolerable cell mate who spends all day, every day, beating you.  I used to think I had a life sentence, but now… I’m getting out.  I’m getting the fuck out of Ass on Fire Land, and have no idea where I’m headed next.  But context is the key — I’ve uprooted myself before.  And this time, sheeut, look out!  I might finally be a force to contend with.

I meant this to be beautiful, not gibberish, long-winded, fragmented, and boring, but now I’m exhausted.  And I don’t write for shit in this state.

Today was one of the happiest days of my adult life, for realz.  Thank you, to those who shared it with me.

[7:03am note: links to be added later]

But I’m not at all like rubber –
I’m porous like the earth,
soaking up your every word and glance.
I’m fragile like a hot house flower
trapped in a conservatory
below the Tropic of Capricorn.
And just like the lilac tree,
I wilt in stormy winter weather
only to blossom heaven for
two weeks every spring.

Still, you think I’m like a rubber tree –
to be bandied about at your will.
Exported and shared, favors
granted to the highest bidder.
But my heart is not made of elastic.
My will cannot be bent.

As a disabled person, I can particularly find truth in that. It’s better for me to accept and move forward than to wonder what my life would have been like if I hadn’t gotten so sick at 13, if the doctors had figured it out sooner, or if I hadn’t been born with a weakened immune system. That’s not to say I don’t sometimes find myself miserably pitying myself with those “what ifs,” but I definitely don’t let them dominate my life like I did five to ten years ago.

I have other “what ifs” I worry about. They’re the ones we all do — about choices in love, career, education, and whether to go to the gym or the ice cream shop around the corner. Those are pretty standard life decisions to bother yourself with.

My biggest these days has nothing to do with any of the above. Mine is, “what if I’d been able to articulate then what I can now and admitted to all my career counselors that in terms of career, I’ve never wanted anything more than to be on stage… as a drag queen?”

I actually think that admitting that much earlier on might have gotten me a lot of the related help I needed a lot sooner. Hearing that this poor agoraphobe actually wanted to be on stage, maybe they would have gotten me help for my social phobia sooner instead of simply labeling me resistant and a school denier. Maybe it would have clicked in someone’s head that I was looking for a reason to hold my head up high, despite then being unable to make eye contact with anyone. Perhaps I would have been forced, terrified, into some performance classes — where I dearly wanted to be but was too scared to go near.

What if. Maybe I’d be able to be me now, if I’d admitted to me then.

What was once a sign of the working class is now a sign of the bourgeois. Except I’m basically unemployed, can’t afford a manicure, and every job I have held in the past decade has been in a form of the service industry, give or take. I don’t have a high school diploma, let alone college, my “middle class values” are laughable, and my husband and I barely slide into the DC area economic middle class — we make it by a paltry few thousand per year. Last year, the two of us combined made half the average D.C. wage for one person, and this year I’m not working so we will be making about two-thirds to half the average wage.

So how bourgeois is soil under my nails, really? Are urban gardening and farming really a food revolution, or short-lived hobby for fiscally comfortable foodies? Once the aching backs and cracking knees of their proletariat forefathers set in, and the first longing for the old conveniences that our grandparents so eagerly embraced at the supermarket, maybe reality will set in for some. For others, maybe dirt in the skirt will stick. Maybe some will truly embrace their newly founded Victory Gardens.

My husband asked me, if folks are calling them Victory Gardens again, what are they emblematic of this time around? Our food buying and eating habits certainly are not making an impact on Afghanistan, so what are we seeking to be victorious of? I think this time around, the fight is against ourselves and the relationships we have cultivated with food: with reliance upon ease of access, with our desire for sugars and starches and all things super-sized, with comfort grazing, with the rise in eating disorders, with Big Agra and the failing regulators at the Department of Agriculture, and with our own crumbling health due to the above factors.

There was an increase in small scale gardening and farming in the 1960′s and 70′s due to the hippies back-to-the-land movement.  What we are experiencing now is similar.  Of course, most of those ideals failed to stick then, though there are quite a few stubborn stalwarts from that era who have gone on to mentor the new generation.  I like to hope that some of what is going on now will catch on at a national level and really sink in deep, make solid change where it is badly needed.  Optimist/pessimist.  Only one can win.

I have since come to the conclusion that “real friends” either live with me, used to live with me, or know me so thoroughly as to not ask if I’m “feeling any better yet” but keep talking to me as though it doesn’t matter if we see each other 1x/week or 1x/3 years.

No, I can’t come out and play tonight. That doesn’t mean you should stop asking. If you stopped being able to hear, would you want people to stop communicating with you? Of course not. Just do it in other ways. And if you don’t care to, then our relationship obviously wasn’t reciprocal in the first place. So the next time you see me, don’t be surprised if I give you a cold shoulder and play down your entreaties of friendship and activities — you didn’t contact me once while I was out of your sight, and now you want a piece of my limited ability?

Go fuck yourself, friend; it’s clearly you who is disabled — in the heart.

Matt and I are not agreeing on this topic. Intellectually, I know the arguments: I can’t let my past dictate my life; the odds of someone assaulting again on campus in broad day light are now slim; odds of being assaulted are slim; it can happen anywhere, so am I going to be afraid to go by myself everywhere (again)? Matt initially said all the wrong things, which has made me even more defensive: oh, it was probably someone she knew (wrong), a fellow student followed her in there (wrong), it was probably in a bathroom at the far end of campus (right — except it’s right across from my classroom, which makes me feel worse).

I am freaked out. The building it happened in is relatively new (two years old) and this semester is my first time with a class in it. I was surprised at its location — it’s got Georgia Ave to the west, Burlington Ave to the north, King St to the south, and to the east is a parking lot and then the metro tracks. You don’t need an ID card to access the building (or any of the buildings on campus), so it’s very easy for anybody to just walk in there… which is clearly going on. Walking around on that campus after dark creeps me out more than walking around the city at 4am — it’s worse lit, and at times, seemingly more deserted. Apparently, it’s even dangerous to use the bathrooms in the middle of the afternoon. That’s not something their wimpy “blue light system” is going to cover. Arrugh. I’m angry and I feel really uncomfortable with the thought of being there, now.

It was so, so sad being there. I really didn’t know my grandparents that well, but I had come to respect them in the past few years. Going through their stuff, sorting it for trash, donation, or to divide among the family, I came to know them better. I have an amazing amount in common with my grandmother; I hadn’t realized how much. The more I learn, the parallels become clear. It makes me feel empty, lonely, guilty, that I didn’t get to spend more time with them, get to know them better once I became an adult — once I began to understand them.

Going through the life’s detritus of people I actually know (I’ve done abandoned houses before, which is different) was bizarre. There were so many photographs of me, particularly in the first 18 months in my life, which is both when my grandmother was teaching herself to become a photographer and was when they still lived in D.C. She had awards for photos of me as a toddler, which I didn’t know. She had other photos published all over the place, including National Geographic. Finding so many pieces of my grandparents’ lives and having to decide what was important — in the attic we found Hebrew prayer books published in 1906 that had come over from Poland when my family immigrated — and what wasn’t — musty rolls of wrapping paper, boxes of empty bottles of photo chemicals, old medical records from my grandfather’s practice, etc.

When my mother’s parents died, I wasn’t invited to be apart of breaking down the household, partially because my aunts still live in the house. But this time around, I’m the oldest grandchild, and also the only one interested in “the family,” as it were. As such, I found the family mezuzah that had hung on the door on the house here 60 years ago, and I actually get to keep it. But I also shed a lot of tears. Going through your loved one’s things in this way, it isn’t something I’d wish on anyone.

I grew up thinking I had bigger boots to fill than I was apparently suited for. I thought I was going to stomp all over the stratosphere and leave sizable imprints behind me as evidence of my impact. Lately, I’ve found my self-importance has ranked me lower than an ant in Yellowstone National Park — not just small, unobtrusive, hard to find — but a molecule in the atmosphere, floating willy-nilly with no purpose, invisible to everyone except those who can imagine I am t/here.

Over the years, I’ve gone from dreams of megalomania to the realization that I’m melting away into the wallpaper, unnoticed, untouched, and not truly responsible for anything except my own demise.

Maybe this is growing up? When youth’s dreams of greatness melt away to the reality of mediocrity in a non-meritocracy, maybe this is what remains — defeat. Or maybe this is the other side of mental illness — having chased away the Phoenix who wanted to soar, I’m now lured by the Hob who hangs out at home, helping around the house and hoping to be invisible.

Because I feel like I could be painted into the wallpaper around you, but you still wouldn’t see me. Apparently, I’m not to be seen.

Or maybe this is actually the worsening of mental illness — having realized that big boots and awesomeness were not possible, I decided that I would be nothing, no one. I diluted what I was — and I miss what I was — in order to “get by.” Except getting by means not doing anything at all. No goals, no substance, no drive, no hobbies — everything was washed away in the quest to get rid of the impossibility of making the mania feel happy, justified, complete, or accomplished. Sack the bitch and get left with the non-producing sow.

Is it the certainty of youth that I miss, or the disease? Was the drive all due to my age, or sickness? Now that I’m older and have my diseased mind in better control, who am I? Am I anything? Do I feel anything, think any non-diseased thought? Will I ever truly be able to reconcile how I feel about what I did in my youth (at times, all of a year ago!)? Or is it just this, from here on out, this vagueness, this even-tempered grey area of the mind that rarely visits the colored world anymore? Perhaps this is why my (much older) second cousin (on my father’s side, which is the side with all the bipolar people like myself) refuses to take medication. Maybe it’s the medication that detaches you from life. Or maybe it’s growing up. Or maybe it’s the disease progressing to a downward turn. Or maybe this is just how I’m supposed to be — once a bright light, now dim and dusty.

I don’t know.

The more time goes by, the harder it is to think, to write, to provide conjecture about these things. The more I just fall into this grey place where I’m not sure I should be, but I don’t know how else or where else to go — particularly because maybe I’m supposed to be here.

One thing is for sure: I miss the stinging clarity mania pretends to provide. It might not be real, but it feels damn good at the time.

I can’t stop laughing about this damn thing. He’s so sweet and good intentioned.

It really feels like a Catch-22, to end up in a situation where I had to make a decision that to improve part of my health, I had to give up all my health and financial security. Matt doesn’t make enough for us to get by in this high cost-of-living area, and I’m too gimpy to find a job that’s where the income is steady enough that the wages will matter. Oh, and possibly, maybe provide health insurance — no, that’s far too much to even slightly fantasize about, much less ask for. [He pays $300 a month for my health insurance, then add our other health expenses like out-of-pocket and co-pays, and that’s another $300+ per month. $600 per month. That’s just under the U.S. average of $7500 per person per year as of July 2009, though it doesn’t include our tax or employer contributions (which changes the numbers drastically).

Along the same vein, I saw the gyno for my annual last week. I was several months late. My last annual came back fine. This one, I have a lot of abnormal activity going on, so much so that my doctor doesn’t want to wait six months to do another PAP but wants to go ahead and schedule a colposcopy. Last time I had one, in 2003, I had to have a LEEP done soon after. If I keep having to have my cervix frozen every five years, I hope I can just get the damn thing cut out. It’s not doing me a hell of a lot of good, anyway. ]]> http://cassandradisque.com/2009/12/07/bummer-of-a-day/feed/ 0