It's been since 2008 that I've had problems with my eyes. They've jutted back and forth over a landscape I'm not too focused on like an impressionist painter just bringing the landscape to life in the first place. Since then, I've lost vision in my left eye three times to varying degrees. This last time, I've got what appears to be the state of Florida in the right periphery of my left eye. I've had the same eye doctor for over five years now and for the last four of them, he's brought up the same two letters to me... MS.
"Have they given you a diagnosis yet?" "You very well might have to come to terms with living with MS." "I think this is MS."
But in countless MRIs of my spine, head, and neck, I've not had one lesion that can be pointed at and said, "Oh! Hey! That's MS!" So I remain a medical mystery.
Of course, I've got other issues, too. I've had migraines for ages. It feels like someone is taking metal jax and playing them inside my head. I've had balance issues off and on that make me run into walls, fall over coffee tables, and I'm the butt of my fiance's jokes that I lose half my life to wondering where my bruises come from. Lately, I've had tics in my face and my legs that last for days that look and feel like an alien is about to escape from my body. And of course, my body feels like it's about to give up on me. I want to sleep like the dead.
And MRIs are not the only medical test they've run me through. I've had lumbar punctures, EEGs, an ENG, VEP, BAEP, and a bunch of different combination of letters that don't really make a whole lot of sense. I've seen a lot of doctors, only to be left with a lot of questions.
The neurologist I have now saw me once, said that it could be a lot of things, said to stay on my medication I'm on now, ordered a few blood tests, looked at my recent MRI, and gave me a once-over before sending me off on my merry little way, no closer to knowledge or sight.
And I wondered... was that such a bad thing?
After five years of dealing with the constant worry of whether I'm going to wake up with something else, of not seeing correctly, of having a yearly breakdown of sight, of constantly battering myself on inanimate objects... was it really such a bad thing to not know what's really causing it?
If I could put a face to this illness, a real name to this process that is causing me so much misery, I'd be likely to cop out. I'd be likely to blame a bad day on a name. I could say, "Oh yeah, It's because of my ____. It's not my fault." Where now, when I'm not moving and eating badly, it's my fault. I should be getting up off the couch and behaving like a normal mid-twenty-something should.
If I put a name to this illness, I'd be likely to have a ceiling to perform to. If I don't get to a top pay grade, or the career choices I choose to make, I'm likely to have an entity to blame. "Eh, but did someone with ___ ever make it even this far?" Right now, I'm going to school, trying to push myself to get to the next level knowing that I'm going to get there.
If I get a diagnosis, I'm likely to mourn the loss of my health. Even though I don't really have my health right now, I would know something is really gone, and it's gone for good. It's really not coming back, it's progressive, and I'm not going to get "better" in the long run. I think sadness over a perceived lack of health forever is not going to cut it. For right now I can still hold on to the thought that just as I went to bed with full vision and woke up occluded and could wake up sighted, I might wake up to no impairments.
On the flip side, having a diagnosis means that I could begin proper treatment, knowing really what's going on, having knowledge is power, and being able to tell other doctors the real reason for my issues. It means a lot. I'd like to think a lot of my issues could be corrected with treatment, but after my last bout with steroids that have been unsuccessful in bringing back my vision underneath "Florida" in my left eye, I'm doubtful.
For right now, I'm glad I don't know. It allows me the freedom to say I'm not sick, that I'm just clumsy, or have a slight visual defect, or that the alien within is trying to let loose. Sometimes it's better to shelter yourself than to let the truth flow inward. I know myself, which is something I couldn't say a few years ago. With that knowledge comes the responsibility of sheltering myself from the decisions I know I would make. I know it would be easy for me to blame something else for the stupid decisions I'm likely to make. I know it would be easy for me to cop-out in my fear and sadness, and to shelter myself from depression and anxiety I have to hold out hope somewhere.
MRIs keep coming back negative. Nobody is really able to really say for certain what's going on, just speculation and two letters that keep coming up. Maybe in the higher order of things, a certain higher power knows what I know about me and is sheltering me from myself, too.
All I know is that for right now, in the words of The Used (a severely over-quoted band by kids of my generation) "knowing nothing is better than knowing at all."