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.