Taken

Last Saturday night I went with my roommate to her work's annual Officer Ball. She herself almost had a date to it, but figured 6 dates (with no intimate contact yet) was a little short of being able to ask someone to what is basically a grown up prom filled with her nosy coworkers. So lucky for me, I got to dress up, look hot, and feel important.

My roommate had already warned me that most of the cops were married, and those that weren't liked to troll for pleasure. Well, even some of the married ones. No one really caught my eye except for a 40-something cop of some sort who read the nominations to something comparable to the Darwin Awards. Wow, I thought as his short, balding self with some unspeakably strong sexuality read for what seemed like a half hour of heaven. He became out of view as soon as he sat down, but when the ceremony was over I immediately glanced in his direction to see if his ringless hand was otherwise engaged. Turns out, it was.

Not only did the short, bald, 40-something have a date, but the date was a tall gazelle-like 20 or 30-something creature dressed in Victoria's Secret's slutty-chic finest, complete with those boots that go over the knee. I kept them in sight as the night went on, and was a bit morose to discover that the gazelle moved just like one on the dance floor and that the guy had his body all over her like he wanted to have sex with her at that very moment -- which I'm sure he had done countless times before. Suddenly flats-wearing me seemed highly inadequate for such a man. Especially because I am still a virgin.

I haven't mentioned this last part in awhile, largely because it is embarrassing, and largely because I rarely have gotten to a point in a relationship lately where it matters. Since having my surgery to fix the vulvar vestibulitis I have gone to bed with one man, my upstairs neighbor O. Trying to be the good girl -- while also trying to mask my complete apprehension -- I played hard to get and wouldn't let him go all the way. But the fact that my body did tense up even though I don't have pain in that area anymore, did make me question my ability to sleep with someone without letting them know of my virgin status. As a 34-year-old divorcee, no one expects that I am so sexually inexperienced. Sure, I've done lots of other things, but when it comes to anything getting close to that particular area, I become a 13-year-old in the back of her boyfriend's car wondering if "it will hurt." Or rather I become my 19-year-old self "knowing" that it will hurt, just like it did back then.

Part of the reason I wear flats is because with my movement disorder I can't walk in heels. Part of it is because I just prefer the comfort. And I'm sure another part of it is that my go to style is cute rather than sexy. I have a huge butt and huge boobs and I like flaunting both. I even wore black fishnet stockings with my dress to the ball. But the black flats with little fake pink pearls on them and little tiny satin bows represents the virginal side of me -- the side I desperately want taken away but also don't know quite how to rid myself of.

Naturally this has been something I've discussed in detail with my sister and close friends. In my mind, I can't sleep with a guy without letting him know of my virginal past, or else he will try to ravage me without knowing that I am still a delicate flower that needs to be opened slowly. But now I'm wondering if this good girl act is really doing me a disservice, especially in regards to the type of men I find attractive. While I don't believe that sex can be used as a tool to reel someone in, I'm learning that perhaps I should let go of the antiquated notion that I have a proverbial key around my neck that needs to be protected and given to the man of my dreams at just the right moment. Advice I have gotten lately is rather to live in the moment, and while I have no regrets about not sleeping with O, especially because he lives right above me, this advice might be just what I need in getting through my divirginization. "Instructional aids" are soon coming to my doorstep, hopefully replacing the need to go into any kind of backstory while in the heat of passion with my next lover, making it more likely that he will actually become one, whoever he is. Then I may still not show up to a ball like a gazelle in Victoria's Secret's finest with heeled over-the-knee boots on my feet. But if I ever do get that short, balding 40-something-year-old in bed -- or on the dance floor -- I'll know how to take him like he's a true victim of prey.

Get your own pair of gazelle boots here.

Brainhilda's Reservations

I've been watching a lot of romantic comedies lately, in part because I like them and in part because Brainhilda* likes predictable plots. Because of this self-imposed survey of the cinematic genre, I've noticed some patterns in regards to the way love and work is portrayed on the screen. Right now I'm watching No Reservations for the first time, and while it's just starting I already know how it will end -- the workaholic and stick-in-the-mud (but shockingly beautiful) chef will first hate and then love the easy spirit male chef who she gets thrown into contact with. Now, this observation isn't entirely original. I read an article about this phenomenon about a year ago in regards to movies like Knocked Up which pair anal women with easy-going men. But after reading the article I am even more aware of the phenomenon's presence. I know exactly why films like No Reservations exist. It comes from a transition of female gender roles. Catherine Zeta-Zones' character most likely had to prove herself as a woman in the workplace. Especially as a beautiful woman who could have become a model or an exceptionally striking housewife. Aaron Eckhart's character, by comparison, is expected to be a professional in his field. He might have had to overcome battles like finances, but as a (white) male, no one would look at him and not take him seriously, especially because he's good looking. Therefore Jones' character assumes an air of a fighter, and Eckhart is free to be goofy and in need of a woman to make him take on more responsibility. And what these films' resolutions tells us is that as professional women we will never be content, fully-functioning human beings capable of love, unless we let loose and not take ourselves too seriously.This is compounded in the above mentioned film, as she raises her niece after the mother dies, and tells her therapist that she lacks the maternal instinct. No doubt Aaron Eckhart will help her find it.

My family is dealing a lot with gender role reversals and challenges right now because of the economy, as is much of the world. One cousin struggles to get a job after obtaining her master's degree while her partner hangs onto his government-based position by the skin of his teeth. Another cousin's teaching position is also being drastically cut as she struggles to raise two children. My sister's nursing program is on the verge of being blocked to future applicants, and my aunt is struggling to find full time and permanent work, as a professional who has entered the workforce in her 40s. And me, well, my state disability program is being threatened to be cut as well, leaving my $339 a month income and free medical care in a precarious position. (I just hired a lawyer to appeal the denial of my social security claim.) The men, while employed, are all facing similar cuts to services and to the ability to create retirement nest eggs as well as help their grown children. The dating service for working professionals that my roommate joined is now calling incessantly trying to find new clients, no doubt losing present clients to changes in income. And my roommate herself is facing a possible layoff next year.

What does all this have to do with gender roles? And what does it have to do with dating with a disability? It means this: On the one hand, the fact that I can't make my own money is less of an issue because many women are in the same situation. On the other hand, that same fact is more of an issue, because while I don't want a man to provide for me, there's less of a chance that he will be able to as well. And with my condition, I can't even think of having children without a full-time nanny to give Brainhilda a break from noise and to get kids to school early in the morning, even though I've always been against the thought of nannies. When a woman in this century thinks about what is expected of her, and how she should wrestle with competing expectations and wishes involving work and home, my female friends, family and I are always wondering if we're making the right decisions. In a way I have more in common with the women I'm in contact with right now than I would if the economy was better. In a way it's as if we're all disabled. We all can not obtain the life we want, and we all have to make adjustments and sacrifices. Will my future sister be able to pay for the wedding of her dreams? Will my cousin's boyfriend make enough to feel like he can get married and have children? Will I find a responsible, care-free man who rolls with the punches that life, the economy, and Brainhilda bring? Will he not only be okay with my professional, academic nature that might rival his own, but also be okay that I don't make an income, don't cook, have a motherly heart but not a motherly brain, and have an independent nature in a somewhat dependent body? We're all struggling to find our places -- every one of us. And maybe the current romantic comedy trend is in part so successful because while the women "need changing," the men are attracted to them because of their strong spirits. And no faulty economy can take that away.

(To see a refreshing change in the genre, I highly recommend the movie Just Wright. It's one of the only movies I've seen where the woman is loved exactly as she is and doesn't change one bit. Three cheers to Queen Latifah!)

*Brainhilda is a term coined by Carole Starr, a violinist who has suffered a rare disorder following a brain injury, with symptoms almost identical to mine. My cousin recently heard her on the radio and she and I have since been in contact.

Muse(ings)

After my diagnosis of somatization, I had one really bad day where turning my head made me dizzy and I felt like I was going to throw up. Of course that much of that was due to crying hysterically the night before (no pun intended). My best friend's words echoed through my head... "You need to sleep less hours a night... Everyone gets in funks... You need a boyfriend..." and I felt myself feeling guilty for being too ill to to anything but with not enough strength to change it. The next day, everything changed.

I woke up just after noon instead of around 5 o'clock, while still maintaining my regular 12 hours I needed by going to bed earlier. I subsequently got to enjoy the sun pouring into the house as I went about my day. I opened my blinds, and I listened to music on my ipod as I cleaned, something that I had stopped doing because the times I can deal with the musical stimulation are so rare. I jumped up and down at Muse's most electric moments, and aside from my birthday where I did the same with each peg knocked down by my bowling ball, jumping is something I had ceased to be able to do for the past few months.

This change was not because I'd willed myself to be better. It was because I had recognized those better moments and made them the best they could be. As my uncle advised me last night, my symptoms are real, they aren't out of laziness, and I do have a medical condition, but all I can do is keep pushing myself within reasonable limits and not party too hard so I don't crash too hard. And in that way my condition is better than it used to be. These days, if I want to be well for something I just make sure that I have nothing scheduled for the few days beforehand so that my stimulation receptors (or whatever the medical term may be) can cool and recharge.

Tonight I went out for Halloween -- my last big event outside the house for the next couple of months as I try to spend more frequent and less intense moments out in the world. I danced, I drank, I talked and laughed, and had a merry good time. I also returned to the dating world -- or at least the "physical" world -- without even trying. A guy reached for my hand as we walked along, squeezing it affectionately, and I squeezed back. We stood side by side, shoulders touching, and caste flirtatious glances at one another. Sure, he was drunk and will probably remember none of this tomorrow, and I agreed to take his hand only because he was part of our group and I was afraid he would fall over otherwise, but it reignited something in me, reminding me of the intimacy I'm missing. I'm unsubscribing from the disabled dating sites. If I fall in love with a disabled man, great, but I'm going to start seeing me when I look in the mirror again, not the disorder that has been threatening my identity. It's real, but it doesn't define me any more than my race, sex, or shoe size. As Muse says, "It's a new dawn, it's a new day, it's a new life / for me / and I'm feeling good."

Hysteria Lane

Last night I wondered if I'd ever be able to write a new blog again. First I had my second appointment with the specialist, who decided I have somatization, and then one of my best friends admitted he thinks I have it as well. As my aunt says, this is nothing new, I've been here before. But the fact that those who truly believe my case are dwindling is still a bit alarming, especially given the medical evidence of a cerebellum disorder. When I received a reply from my regular neurologist it all came together -- he had written in my file that some of my worsening may be an emotional response from starting a new path.

My neurologist didn't want to tell me this gut reaction of his, and neither did the specialist or my best friend, J.R. After my appointment and before the phone call with J.R., my roommate and I finished watching Sex and the City 2, where Carrie kisses Aiden on foreign soil and is contemplating whether or not to tell Mr. Big. The girls act as little voices on Carrie's shoulder, speaking aloud the debate that is going back and forth in her mind. "To tell him would only distress him." "It was only a kiss." But a bigger voice, the one she uttered herself, said that she and Big never keep secrets and that she wasn't going to start now. Mr. Big was hurt but came around, and Carrie realized that she needed to trust that her relationship was not turning into that of an "old, married couple," and that even if it did, that would be okay.

While Mr. Big didn't yell at Carrie, probably due to his natural elusiveness and her long distance proclamation, I did yell first at the specialist and then at J.R. "It's something to think about," J.R. said, and I assured him (while still yelling), that's it's something I think about every day. Whenever my legs won't work I wonder if I am creating this drama for myself, or if bad karma had come back to bite me because I used to love to pour over medical journals filled with gruesome pictures when I was a kid. But then those who have or do live with me remind me that seeing me day to day assures them that none of this is self-created. Those who see me periodically -- like he specialist who knows nothing about me aside from my complaints, and J.R. who I store up energy for in order to put on my best face -- don't see my day to day struggle that has everything to do with bodily responses and nothing to do with a sour or melancholy mood.

What's interesting about somatization is that it is merely a 21st Century term for hysteria. Much more women than men are diagnosed with it, and because it is defined as something the patient creates but ultimately has no control over, it's an infallible assumption. My aunt, who was equally outraged at the appointment, asked the specialist why we are supposed to go on faith when medicine is built on scientific proof. Somatization is in many cases another word for "I don't know," without the feeling of helplessness that doctors can feel with those words. Somatization really means, "We haven't figured it out yet," because if you look back through history, many now well-known disorders and illnesses were first said to be based on stress, simply because the medical profession didn't yet have answers. But somatization, like hysteria, is a dangerous term, treating the patient as a self-sabotager who back in the day would be forced to lie down in bed for months, see no one, and to live solely on warm milk. Sounds kooky, doesn't it? Now doctors take the opposite approach. Somatization means that you need to do more, be more, and just suck it up and move on.

Back to Carrie and Mr. Big, is honesty the best policy? Would it have been better if these men had not shared their perceptions with me? Absolutely not. If I did have somatization I would cast them from my life and insist that they were crazy. But because I don't, I can allow myself to see things through their eyes, to accept them for their human reactions, and to work with them to create an even better cooperative approach to my diagnosis, prognosis, and care. I've had many conditions that were first considered to be psychosomatic and that have since then been diagnosed medically, and I know this current condition is no different. Furthermore, while the specialist read my file and assumed that my case was all psychosomatic -- with a smirk on his face while he said that he's seen this many times before -- my neurologist and my best friend just want the best for me (the latter thinking all I need to cure me is a boyfriend). They just want answers, as do I, and I'll keep writing my story no matter what people think.

The Objects of My Affection

My birthdays have long been associated with hookups and breakups. In 2003, J and I became official after watching his friend's band play in a club. In 2005 I hooked up with B, who every girl was either explicitly or secretly in love with. In grad school in 2007, my new best friend began dating her housemate, unaware of my secret crush on him. In 2008 that same best friend "broke up with me" at my party, moving on to a new girl in school who was wittier, hugely sarcastic, and way more seemingly self-assured. This year I get to turn 34 celebrating with some of my closest friends who have known me for several years -- some for decades. Unless I become a lesbian overnight or one of my male friends turns straight, there will be no hookups or breakups, at least none involving me.

Three days ago my symptoms worsened from what they usually are, and I had to use a walker around the house for the entire day. I briefly succumbed to despondency, thinking that I'd have to cancel my upcoming birthday plans of dinner out followed by up-scale bowling. Then the Me that I know returned and I promised myself that if I needed the walker for my party, I'd take it right into that restaurant and right down that bowling alley, bowling the ball, walker and all. It did however prompt me to join yet another dating site -- this time one for people with disabilities. While most of my winks have been from guys in foreign countries looking for visas, I figured the hearing impaired guy in my state or the one with Asperger's just might get where I'm coming from and overlook my disorder as he would wish his to be overlooked as well. Usually I can hide my condition until I'm ready to share it -- stating that my lack of a car is due to economics and that I spend my days working on my Master's degree. Both of these statements are true, just not full disclosures.

However, if I really do become fully dependent on a walker -- and it looks like I probably will -- my disorder will be the first thing people see about me. In a way this is bad. No one will get to know the real me before learning of my complications. But in another way it's good. There will be no secrets, no wondering if someone would lose interest in me if they knew about my difficulties. And after all, who says walker-clad me is not the real me?

Within my group of friends, some are in committed relationships, others are interested in each other, and my roommate just had a second date with a guy who seems perfect for her. I remember one of my favorite movies, "The Object of My Affection," where gay Sidney asks Nina who is in love with gay George: "What happens when all your friends find other men? Who will be at your table then?" Sidney is in love with George's boyfriend Paul, and the one man in love with Nina she doesn't want to be with. Well, if the movie is any indication of my future life, all my gay and straight friends will still be around my table, with their gay and straight partners, and I just may end up dating a hot police officer who kisses my hand while my daughter sings the lead in the school play. Even if only the beginning of that scenario comes true, I'll be happy. When your health fails, friends and family become paramount, and a romantic partner moves down to the category of nice but not necessary. I may feel despondent about that tomorrow -- but not today.

The Big Black Book

Some people have a figurative black book of all the relationships they've had. The book is heavy and filled with ecstasy and despair, or at least joy and sorrow. If you flipped through the pages of the book you would see an ebb and flow of each relationship, just as we have with anyone, including friends and family. You've long heard the statement that dating would be a lot easier if we had access to these black books -- if we were to know the bad parts about the person we're dating without having to find them out for ourselves. Sometimes exes come together after a breakup with the same man and talk about the problem that they each had in their relationship with him. Other times -- or at least on Sex and the City -- women will spread around a guy's great reputation in bed for the benefit of future lovers.

Bigger than my black book of relationships is my folder of doctor's chart notes. In college I'd feel self-conscious whenever the nurse or doctor would pull out the folder and exclaim how big it was. Women are afraid to tell partners how many men they've slept with... Well, I was afraid doctors would assume I was a hypochondriac based on how big my numbers were. Of course now we all know about my tiny cerebellum, but back then I just had a stack of visits with unfilled answers. Just like in relationships, some of my documented interactions with the doctors were fraught with misunderstandings, misdiagnoses, or what turned out to be silly reasons like a stomach ache that wouldn't go away (duh, constipation). Other times the visits were filled with important advice, diagnostic breakthroughs, or treatments for non-cerebellum related issues that I really needed. With each visit my file got bigger and bigger, just like the time and content that accrues with each day of a relationship.

Sometimes with a move, or a change in physicians, you get a "clean slate" just like you do after a breakup. Your new doctor won't know that your old one thought you had an eating disorder or that you let an important med run out and needed a refill ASAP. He won't know anything about your visits to the counselor or your mom telling the story about a relative getting healed from something like polio by falling down the stairs. But, just like with couples, these big books of information help the next physician in accurately treating your present symptoms and gain a bigger picture of who you are.

As I just had to change doctors last month because of changing insurance, I'm now at the point once again where my folder is brand new. The movement specialist looks at me funny when I say trying to drive is like skiing toward a brick wall, and my new GP doesn't believe that my side effects from a new medication are because of the medication itself and not an anxiety disorder. In time the chart will get filled again, next week with a psych evaluation for my social security claim and a follow up with the movement specialist a couple weeks after that. It's hard to let go of my neurologist of the past three years, who was the first to take my movement disorder seriously. Women with a lot of sexual partners are called sluts, and women with big medical charts are called nervous, weak, or anxious. My neurologist knew I was none of those and took my big black book seriously. A good boyfriend, just like a good doctor, won't run from what he finds within those pages. And if you come to him with a clean slate, he'll do his best to treat the new book with respect.

The Home Team

A couple weeks ago I joined a new dating site. Almost immediately I received about ten or fifteen emails from guys interested in getting to know me. While I later learned that the site has a reputation for being a place for men to find "fast and loose girls," the attention was quite an ego boost, especially because I posted pictures I wasn't quite sure about like one highlighting my curls and one in a fancy dress on a heavy-weight day. Turns out the men love my cuirls and they don't mind the extra weight because of my cup size. (The one who commented on my cup size I soon after ended contact with.)

My roommate and I created nicknames for the potential suitors. There was Wii Guy, Biracial Guy, Indian Guy, Italian Guy, and The Mexican. Biracial Guy turned out to be a creep, Indian Guy disappeared, Italian Guy was too young, and The Mexican is now on my yahoo messenger but we have yet to talk. Wii Guy is still in the runnings, thinking it's hot that I love to play Scrabble and feeling lucky that I give him the time of day.

As you my readers know, sometimes I wonder if I really should be putting myself out there at this stage of my health. I have a more clear diagnosis but at least so far recovery doesn't look too promising, and I continue to get progressively worse. Last night I compared my roommate's MRI scans to my own and discovered my small cerebellum that was mentioned in the report. It relieved me to see what the doctors finally saw, but it also made my condition even more real. Just a few minutes ago I read someone's profile who stated he was looking for a heroine and not a damsel in distress, and I wondered which I am.

My roommate and I went to our first baseball game tonight aside from a Giants game when we were kids, and for the first two innings I felt like a heroine. By the third inning my brain encountered sensory overload and I felt like a damsel in distress as I departed the stadium and walked to the car while my roommate watched more innings. The silence of the car quieted my brain and I reentered the stadium as a heroine, all the way up until the very last play as I cheered and clapped with the rest of the spectators at our city's rare win. Maybe, I thought to myself, if I only need to leave a baseball game for half an hour or so, I'm still datable. This feeling of not being datable is not because I'd have to leave something that a man might enjoy, but because I had to leave something that I enjoyed, and that I hope a man can enjoy with me. I now have visions of frequent summer tickets, team shirts, and bringing my future kid(s) to the game.

My aunt and uncle have a marriage that I've long admired. Their 33 years of commitment isn't based on a philosophy of "Til death do us part," but instead on the reality that either of one them could decide he or she didn't want to be married anymore, and that if that happens, they will divorce. While this might not seem romantic, it provides them a sense of security that every day they spend together is by choice. There is no sense of being forever bound against one's will or caught in something they can't escape. I realized tonight that I want to go into my quest for a relationship with the same mindset. My ex-husband stayed married to me despite my health problems because he felt obliged to do so. He played the "nice guy card" and I was left feeling guilty for any complication I created in his life. Never again do I want to be in a relationship where a guy feels bound to me out of duty or sympathy, or out of a feeling that he made his bed so he must lie in it. And never again do I want to feel that for myself.

My roommate assures me that my medical complications, even while increasing in intensity, are not as bad as I think they are as far as my ability to date. "It's a problem if you can't bathe yourself for weeks on end," she said, "Not that you can't drive a car." As I continue to open myself to possible romantic relationships I'll keep her words of wisdom in mind, and I'll make sure that anyone I date knows they have the ability to leave at any time. Not because I'm not worth committing to, but because I want every day they spend with me to be of their own free will and not out of a sense of obligation. I don't want to feel that I've tricked someone into not leaving me, but instead revel in the knowledge that he can't live without me, or that if he did, he would be losing a wonderful woman that he loved.

The Hidden Self

Knowing the self is important in the dating world, even if that self changes over time. I have many definitions attached to my personhood which will never change, and others that do, but this health definition seems very hard to come by. Doctors have tried out various diagnoses, and with each one I either reject it or accept it and attach it to my identity. For three years that diagnosis was finally fibromyalgia, but in the past few months it's shifted from that to possible seizure disorder to congenital brain abnormality.

I picked up my MRI scan on Monday to take to the movement specialist, and the report stated that I have hypoplasia of the inferior cerebellum vermis: the specifics of the congenital brain abnormality that my neurologist mentioned a couple months ago. "Yes," I thought, "I finally have a name." But when I googled this name, the diagnosis didn't seem to fit my symptoms, and when I saw the specialist today he seemed to feel the same way. Can an MRI lie? Can I have hypoplasia but in a different form? Do I have something that looks like hypoplasia but is really something else? All my new neurologist can tell me, from looking at my scans, is that my cerebellum doesn't have a tail, unlike normal cerebellums, and that this is the root of my brain abnormality. I walked out glad that I had some new information, however vague. When I got home I looked at my roommate's scans with a friend in medical school and I can find no tail on hers either. Now, I am no medical expert and if the specialist says there is a tail there has to be one. And if he says I don't have one I obviously don't. But for once I'd like to be able to say, "Look, this is what I have. See?"

I'm by no means a wallower. I live my life to the fullest even with my brain disorder. I look at the positives in everything and rarely do I feel that my situation is hopeless. While I still don't feel that my life is over, I am caught between relief that something has been found and disorientation that the doctors are still as baffled as I am as to what those findings mean.

Since this is a dating blog I will come back to that, though in no way do I wallow in this either. But my ever present dating thought is: What if I don't get better? Okay, I can deal with that. But what if I get worse? Over the past three years I have gotten worse and while I'll stay hopeful that treatment is out there, there's a fine line between denial, acceptance, and despair. Earlier in my life I was in the denial phase. I tried to live as others lived and hoped that my symptoms would go away as magically as they appeared. I'm nowhere near despair, but I am now pretty fully into acceptance. Reaching the acceptance stage has helped me to do positive things like get government assistance and apply for low-income housing -- things I wouldn't have done if I'd still had the belief that my symptoms would resolve themselves. Maybe acceptance is an important step to moving forward, not an antithesis to it. Maybe it's important to realize things may never change, and then to see how the world can change around you, to love you and accept you just the way you are.

This blog doesn't feel very focused, but I don't feel very focused myself right now. I'm full of answers and just as many questions, if not more. Every day brings knowledge about the self that was always there but hidden away until a particular moment. I've always had a congenital brain abnormality. I've had it since the day I was born. But just five years ago did I start to experience it, and just a few weeks ago did I learn that it was there. It's almost like learning of a secret relative -- this person was always attached to you by blood but you just didn't know it. He or she was defining you even before you knew they existed. So how do I welcome this new/old family member into my home?

I haven't dated in awhile, but I've had some great moments with great friends. Most of my time is spent sitting on the couch watching other people's lives on the TV screen. But every once in awhile I get to store up enough energy to be present in the actual world, dancing and singing to familiar songs at a concert, or sipping tea by the water, or even playing Scrabble in a Scrabble club instead of at the kitchen table with my roommate (while she plays at the club as well). These moments make it okay that I've lost the ability to run, drive, and now even read novels. It makes it okay that over half my life is spent in deep sleep and that my dreams are almost more real to me than my waking hours. Maybe that's why we don't get everything in life. Because when life takes away something, it makes those other things much more precious. Hug your loved ones today. Tune in to what your senses are experiencing. Revel in every touch, sound, and sight. And I'll do the same.

The Trump Card

Yesterday I ran into "O." It was the first time I'd seen him since we passed each other in the hallway a couple months ago after our sixth month flirtation ending in what I'll call a "one night sit" since I wouldn't go all the way. To refresh everyone's memory, that night I darted out of his room after he fell asleep, left a note saying we should go out on an actual date, and he texted back the next day saying that that was a great idea. Then I never heard from him again despite my occasional text messages asking him what was up and telling him that as a neighbor I needed and deserved the "It's not going to work" talk.

Anyway, when I ran into him a couple months ago I was dressed in a cute outfit. I had been well enough to take a shower that day and I was getting groceries out of my roommate's car. We stopped in the middle of the hallway and he introduced me to his long time friend and said that he would talk to me soon (which he never did). He was open, unreserved, and seemed to know that his lack of communication was his problem and not because of anything I had done.

But when I saw him again yesterday, I was in pj sweats, my hair was in four slept on braids bunched together, and I hadn't showered in a few days (though a wash cloth and deodorant hopefully kept me from smelling). O was getting out of his car as I carried a garbage bag full of recyclables down to the bins which are located right next to his parking space. I did a little half wave, and our conversation went like this:


O: (smiling but scared) Hi.
Me: (smiling but aloof) Hi.
O: How are you feeling?
Me: Good.

Then I proceeded to drop of the recycling. As I came back out of the trash area he was getting something out of his car, so instead of saying bye I just continued on my way to get the mail.

That "how are you feeling" really irritated me. The only change between our first chance meeting and our second is that I had texted him of my brain abnormality, since when we were still friends we had discussed my search for a diagnosis which my doctor thought at that time was probably the rare seizure disorder. The last time I had heard "how are you feeling" in that tone of voice, it was said by an MRI tech as I was getting a scan to rule out MS. When the tech said it I felt the same irritation, though at the same time I felt a bit of fear that what ailed me may be worse than I had imagined. Luckily it wasn't, at least not then, and I left knowing that the tech was trained to treat his patients with fragility.

O, however, is not an MRI tech. He is a guy who tried to sleep with me and never called me again, despite knowing that I live right below him and can hear everything he does. The MRI tech was allowed to ask how I was feeling. The only thing out of O's mouth should be an apology for standing me up. Or it should at least be the first thing.

It's not that I don't want people to be aware of my disorder. When friends don't understand the complexities of it, I'm always open to discuss it with them so they'll get the full picture. And when they ask how I am as if I were fragile it doesn't bother me, because our friendship goes beyond me being ill. It's filled with talk about how our days went, drinks and food consumed with laughter, and a sense of connection that's separate from health.

But potential boyfriends are different from friends. Friends see my fragility but they also see my strength, and it's the strength that they focus on when they interact with me. When I find the right guy he will also see this strength. Not in terms of thinking of me as a warrior or hero, but just an average person dealing with a hard life issue who tries to take it in stride. But to O, I am someone to be pitied and ostracized. In his eyes I lose my sense of humanity, and even my right to be treated respectfully, because I am not well. It's as if "congenital brain abnormality" trumps "being stood up," and because my disorder is so much worse than his actions, he shouldn't be responsible for apologizing for them.

I ended the night being tortured by his karaoke party where I could hear every song sung and every laugh laughed. But the "torture" was cut short when my gay friend picked me up for a night on the town. We met our other friends, we laughed and talked and danced, and when he dropped me off his final words were not "how are you feeling," but "I'll see you again soon."

I am America

My dad was a hustler. He hustled himself in and out of marriages and parental responsibilities to numerous women and kids. He hustled himself straight into prison by attempting to rob a bank, and he hustled the government by getting social security disability even though he wasn't disabled. When my dad died he didn't have a penny to his name, he was still an active alcoholic, and he had recently "moved up" to an apartment that didn't have rats running around or stray bullets flying through his living room window. My relationship with my dad was probably similar to most middle class girls with working class fathers -- I love talking about his deviousness and his spunk but neither I nor him wanted me to turn out like him. I was supposed to rise above his station and make something of myself.

Today I applied for SSI and SSDI, and I wonder how my dad would feel about me being on welfare just like he was. "The apple doesn't fall far from the tree," he'd probably say, and probably still tell his neighbors about what a bright and gifted daughter he has. I can't shrug the feeling though that he would probably also be a bit disappointed to see that despite all my education and middle class upbringing, I'm right in the same spot he was in. And I can't deny the fact that I feel a bit disappointed in the situation myself. When I look at all the details that have led me to where I am now, it all makes sense, and I know that my case is different than his was. But coupled with that is the knowledge that despite our largely different life experiences, I am my father's daughter. I'm a bright and intelligent human being who is thwarted by a body that can't overcome its demons.

My dad had a lot of problems, and was not really a father at all, but the one thing he gave me was a sense that I am worth something and that I can do anything I set my mind to. My dad had a lot to say but did not have the strength to say it. He died an astute man who was not able to make his mark on the world. The longer he's been dead the more I learn about what his life must have been like... What it meant to be a black man born in the Midwest in 1930. What it meant to live through Martin Luther King, Brown v. Board of Education, and the LA riots. When Michael Jackson died it felt like my dad had died all over again, yet more tragically this time because I'd had years to get over his abusiveness to my mom and to grieve the relationship I wished we'd had. When Obama was elected into office my first thought was to my father and what that would have meant to him.

This is what keeps me writing. My dad left me with nothing but he also left me with everything. He and my mother created a daughter on Haight Street in the 70s and we lived in a walk-up apartment home until I was three. I slept in the walk-in closet in between the bedroom and bathroom, and got up and yelled "Daddy!" with a big smile on my face, every time he tiptoed past me to take a bath.

I may be on welfare like my father was, I may have even inherited my congenital brain abnormality from his genes, but he also gave me a legacy important to the history of mixed race America, and because of this I can't not share my story, no matter what it may be. So I'll take my food stamps and government handouts, and I'll be my welfare father's educated welfare daughter, writing writing writing till the day I die.

Head games

The most exciting thing about getting the MRI showing I have a brain abnormality is that finally I have proof that what I have isn't in my head. I thought this would come in handy on Saturday when I became extremely dizzy, stumbled around the house, got into bed with the room spinning, and then stood back up for a blanket and realized I couldn't walk.

This has happened once before, and in that instance, at the advice of my general clinic, I called 911. Sure, it wasn't life-threatening, but when you can't even get yourself to the bathroom, let alone to the doctor, it's quite alarming. In addition, as I'd been watching my legs slowly get worse, having them go out completely was my biggest fear. I wasn't even sure how to unlock the door for the EMTs until I realized that in my 10x10 apartment I could get to my computer chair in one fell swoop and wheel myself to the deadbolt. Once at the hospital, the doctor was less than helpful--actually downright rude as he yelled at me to put one leg in front of the other and couldn't understand why I couldn't complete that task--and after a few hours my legs started working again and I was sent home.

On Saturday night the same thing happened. It had been a year since the previous instance, and while I was pretty sure it would go away in a few hours, the fact that I had to pee and couldn't even take a step while leaning on my roommate was scary. Plus, she said, "Maybe this time, going in armed with the knowledge of having a brain disorder, it will be even more crucial to get yourself checked out."

The advice nurse said to call 911. The paramedics said, "This is only for emergencies" as they looked at me in bewilderment, until I tried to walk and they saw my right leg completely stationary. They carried me down the stairs in a kitchen chair and took me to the nearest hospital, where the doctor yelled at me for coming in and the nurse asked if it was mental. Now, the doctor and the nurse did have their reasoning. The ER didn't know what to do with a rare brain abnormality and a nurse couldn't really understand why my legs can't move but my reflexes and strength are intact. Still, I was hoping that "congenital abnormality of the cerebellum" would carry just as much weight at the hospital as it did to the Department of Social and Health Services. On Sunday night my legs went out again, and I now have a walker by my bed for future occurrences, which I hope I'll be able to use. (Wheelchairs are out as they affect my sense of balance.)

Today my roommate went up to see her parents. Her mom, who is a nurse, tried to persuade her that my case is worse than we think it is and that it won't go away. We pretty much agree with this statement so it wasn't controversial. When she questioned the reasoning behind my roommate calling the movement disorder specialist on my behalf, my roommate let her know that we are trying to keep the appointment date a secret from me because sometimes I can come out of episodes for a few hours due to the adrenaline rush of knowing I have something important to do (and then I crash hard after). At that statement, my roommate's mom questioned the validity of my disorder and concluded that it must in fact be mental.

I don't begrudge her for thinking it's mental. I mean, if I wasn't experiencing it I would think it was too. But it is a little disheartening that I'm probably going to have to defend myself for quite a long time if not forever, and that some people will never be able to grasp what's going on. My neurologist understands the adrenaline rush, and the fact that I can have it and still not be able to control my disorder, and that's the important thing. So does everyone I have lived with throughout this experience. It's impossible to see me day to day and not know that something is happening to me in almost an exorcist or out of body fashion. But on my well days, which is when people outside the house see me, I always look, and feel, completely normal.

Well, nothing about dating in this post, but man, those EMTs were sure hot.

Acceptance

It's amazing how quickly a person can get aid when brain abnormalities are discovered. A week and a half after applying for state disability, my request was granted. I opened and read the letter with as much excitement as when I received my acceptance letter to graduate school. Actually, with more. While graduate school acceptance letters are written in the positive, state disability letters are written in the negative: "We have determined that you are unable to work..." This negative statement at first led me to believe that I had been denied. "Unable" is usually not something you want to hear in a letter. But my disillusionment was soon corrected, and unlike receiving my graduate acceptance letter where I opened it and then went back to bed in sickness, with this letter I actually ran down the driveway with a grin from ear to ear. Finally I would be able to receive monetary compensation for my inability to work. Finally my disorder would be taken seriously.

With this officialism of my disability, I walk a tight rope between acceptance and perseverance. I have come to terms with the fact that I may never get better, and this has proven necessary in order to get my life in a place where I can function in my limited space. This doesn't mean I've given up on my goals. I'm still getting my degree, still working on my writing, and starting the process of moving to Seattle through subsidized housing which will take about a year. But what it does mean is that I'm allowing myself to be taken care of by the government. (I've never been happier with America.) I'm allowing myself to be okay with buying clothes from Target. I'm also allowing myself to be okay at 150 pounds with a distended stomach.

My physical appearance has caused me a lot of grief. I used to be 100 pounds, so adding 50 more to that frame has come as quite a shock. A few days ago my grandma, who is starting on Prednisone, pointed at me in fear saying, "I'm going to get fat like you." I don't know whether it was a difference in what I was wearing or just a different attitude, but yesterday she actually said I looked good the way I am. So did a former lover who I ran into a couple weeks ago and hadn't seen in years. This lover herself has always been overweight (yes, I had a fling with a girl in my college days) and I have always considered her to be absolutely gorgeous. What made her gorgeous was no doubt the way she carried herself. She acted like a hot commodity, and so she was. Not only with scrawny me but countless men with whom she came into contact.

I still wonder how to feel sexy when my clothes are off, and I still wonder what I'll tell men when they ask me what I do for a living. I see the latter scenario going a bit like this: Man: What do you do? Me: I'm a writer. Man: What do you write? Me: Book reviews, mostly. Man: Oh, can you make a living off that? Me: (blushing), well, I try. Man: What was your latest review? Me: Umm, I can't remember... It was a year ago. I've been in school. Man: Oh, so do you have your degree: Me: Not quite yet. Man: So are you in school now? Me: No, not really. I also write screenplays. Man: Oh, have you sold any? Me: Well, not yet. Now, I know I don't need to answer to anyone about how I spend my time, but the fact is, up until I got sick I worked all my life, and it's hard to define myself outside of a paycheck.

Acceptance and perseverance is not just a struggle for us disabled folk. It's also a struggle for just about everyone. Today, as I sit at my desk by the window and gaze out at the bright blue sky, I'm accepting my distended stomach because my legs do not feel well enough to walk around the block, nor have they for the past week. I'll accept my inability to read today and instead zone out on the couch in front of the television, waiting for my creative juices to get flowing at about 2 a.m. for an essay I'm submitting to Glamour. When the actual brain fog lifts, I'll read, I'll shower, I'll walk... but when my symptoms are heavy upon me there's nothing to do but embrace them. And now I have the government behind me when I do.

By the books

One good thing about having a best friend / roommate with a well-paying job is that you get to reap the benefits of her lifestyle, one being limited entry into the dating service world. No, I don't get to have a profile but I do get to go to some of the events. The plus side for her and the agency is that of course then my roommate is more likely to go, as she will have a wingman, coach, cheerleader, and second pair of eyes. Tonight we tested out the event portion of the service for the first time and drove to a comedy night a couple cities over. Make Every Man Want You, by Marie Forleo, suggests that each woman embrace her "is-ness," so as we drove away from the condo complex we reminded ourselves that everything is exactly as it is supposed to be right now. I can't remember what my roommate's is-ness entailed, but my mantra was that I'm supposed to be sick right now, and I'm supposed to not have a job. It's all part of the organic unfolding of my life and all I need to do is embrace it. Yeah, a little cooky, but it got two girls, who often apologize for their shortcomings, in the right frame of mind.

My is-ness told me not to judge the comedians for not being funny and not to judge myself for not thinking they were. It told me not to judge my roommate for laughing out loud, especially as the rest of the audience seemed to be in the same slightly self-conscious fit of hysterics. Lessons from Why Men Love Bitches told us to not apologize for leaving during the intermission, which was necessitated by my ensuing "cerebellum flareup" (for lack of a better word) and my subsequent inability to tolerate the head comedian's booming and energetic voice. "We made our appearance and we left when we got bored, cloaking ourselves in mystery," my roommate assured me, though I felt slightly guilty since she seemed to be enjoying the booming and energetic comedy. I also felt bad after stating that there was no one of interest in the room anyway and she mentioned that the guy we were talking to seemed nice. But, I guess it's all part of the is-ness, since if I hadn't gone my roommate probably wouldn't have either.

Oh, right, I forgot to mention "A." As I'm sure you've guessed, he's just that forgettable. Last week's second date was canceled to do my cold so severe that it hurt to swallow my own spit, and after A's enthusiastic post-date email and enthusiastic rescheduling for an unspecified time this week, I have yet to hear from him. No sleep, or even thought, lost on my part. (No, I did not mention the spit.)

I do wonder though, as I did during A's eye rolling at my not doing this or doing that, if I am really in a place where I can date now anyway. Maybe I need more well days first. Maybe I need a job and to spend time with my Seattle friends and get more local experience under my belt. But then when I think this way I remind myself that I have experienced a plethora of, well, experiences. Sure I haven't been to this mountain, I haven't been to a wine tasting, and I haven't made it across the border into Vancouver. But I've put myself through both undergrad and graduate school, been married, seen my dad through death, and I have about 13 google pages dedicated to my book reviews. Not too shabby if you ask me. Sure, I may not be a woman of leisure who spends her time in self-entertainment, but I'm a fighter, a warrior, and just a little bit of a hero. If I listen to my "is-ness" the right guy will see this as a reason to love me, not just something to tolerate or admire from a distance.

No one acts with more "is-ness" than improv comics. Every situation is presented to them without much say on their part. Every line that someone says is a page in their funny book that they themselves didn't write but have to act on. Almost every action is a reaction to something else but has to be presented as an action. And every action/(reaction) is an effort to bring coherent order and a cumulative plotline to a chaotic assortment of words and movements. Sometimes their (re)actions are funny, and sometimes they're not. Sometimes they move the comedy along, and sometimes they bring it to a screeching halt. My life is an improv, a dancing around the is-nesses of my personhood. And dates are an improv with an audience of one. "A" and I both left our seriously short lived dating life at intermission, but someday I'll find someone--and be someone--who wants to see the act all the way through.

When one door closes

Yesterday I said goodbye to one life and hello to another. My cat Oscar has been with me for the past two years, ever since I saw his cute little face in a Craiglist ad. I was all alone in Massachusetts, would soon lose my closest friend there in an ugly "breakup," and Oscar with his sweet nature and constant purring filled the kitty void that I'd been feeling for quite some time. Because he was elderly and had FIV I knew our time together would be temporary, and yesterday as I held his head in the crook of my wrist he got the shot that passed him on to the everlasting.

I don't believe in God or fate, but I've always felt that the Universe gave Oscar to me so that he and I could be sick companions together. The first time I took him to the emergency vet, six weeks ago, I received feedback from my own doctor that I may have a seizure disorder. That emergency visit revealed that Oscar had an extreme and recurrent case of constipation that might not be treatable. As the month progressed I cherished every moment with him, and coinciding with his apparent resurgence in health due to an extremely regulated diet filled with prescriptions, results came back that I did not in fact have a seizure disorder. Oscar and I were once again biding time together waiting to see whether we would get worse or better.

Night before last Oscar got worse. I'll spare my readers the gory details, but he was completely backed up, was vomiting profusely, and needed an enema. Even as my roommate and I drove to the vet I knew that this might be it for Oscar, and as I drove back with the x-ray in hand proving that he was in fact just as ill as he was six weeks ago, I knew my time with him was down to a matter of hours.

While I was sleeping waiting for the vet appointment where he would draw his last breaths, I received an email from my neurologist stating that last week's MRI showed a congenital abnormality of my cerebellum. Now, it seems selfish to say that Oscar's work was done, for of course I would have liked to have had him for many years to come. But the uncanniness of his and my diagnoses on the exact same day made me feel that the universe was ready to take him back and get him ready for his next appointment as a companion for a sickly cat lover.

I don't know yet what it means to have an abnormal cerebellum, only that the diagnoses fits perfectly and that I cannot express my relief to finally have concrete evidence as to why I'm not well. My relief was mixed with sadness as Oscar died before my eyes, but I draw comfort from the memory of my roommate's family animals being present at Oscar's wake as her father buried him on their beautifully bucolic property. One big dog, one little dog, and a huge cat trotted down the driveway with us as we carried the Xerox box with Oscar's lifeless body. My roommate's father dug the hole, placed him in it, and covered it back up. I placed a little yellow flower on the grave and returned home with empty hands and a full heart. Oscar, wherever you are, I'm thinking of you.