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.