Saturday, September 20, 2008

If I only had a brain

Back to: The beginning

September 2007

The month opened with me trying to schedule an appointment for a second opinion with my wife's GP. He's a very thorough doc that she'd been seeing for a few years and had a lot of confidence in. My wife was out of town, so I called the office and introduced myself and asked for an appointment. They very nicely told me that I could have one late next week.

Enter irrational rage. I was so mean on the phone - didn't these people understand? This is urgent! Having been there and mostly back, I realize now that I probably was making very little sense - having trouble speaking, vocabulary was about 30% of normal, etc. Finally the receptionist evenly asked "Do you want the appointment or not?" I replied nastily, "Sure, but I won't keep it." and slammed down the phone. Whaaaa? Who is this person? You'd think maybe I had rabies, not lyme.

Looking back at my calendar of that next week, I see that I was still trying to work. I work with software and computers, as well as with diverse other teams that don't always agree on things. So there can be a lot of tension at times. In retrospect, I believe I was probably very unprofessional that week, irrational, not articulating well, irritable, and starting to forget things. I was forgetting the layout of systems that I had personally designed only a couple of months earlier. I often couldn't figure out how to login to things. Even when I'd try and step my way through something, leaving placeholders, scrawling little notes that I then would lose, the next day I'd realize that while I succeeded in those steps, painful as it was .... it was the wrong steps. The whole strategy was flawed. What little awareness I did have of what was going on was scaring the hell out of me.

I was given directions to this doctor's office, and I drove myself there - about 1/2 hour away. I'm very good with directions and spatial orientation. I can always find my way.

Not that day. I drove right by the place a DOZEN times, each time getting more frazzled. Once I had to actually pull over because of a murderous road rage that overtook me, spurred by some imagined slight by another driver. Foaming at the mouth angry. Another time I pulled over and completely broke down sobbing. Oh boy.

I couldn't fill out the forms in the doc's office - no energy to write (huh?). Or to think. I can't imagine what I looked like staggering in there, barely coherent. I tried to explain my symptoms, but they were so many, and so unlikely (I thought), and I was SO tired, and I couldn't find words for anything, and just talking completely wore me out.

So the doc said I very likely had a manifestation of lyme in the central nervous system - in the brain. Oh no, that's the nasty neuro-lyme I'd read about. He ordered a spinal tap, and referred me to an infectious disease specialist.

A day later I called work to find out about short-term disability, and asked them to repeat information several times before I could get it written down in a hardly legible scrawl. Even then I remember asking if they could email all the information to my wife, as I was likely to forget it all.

I haven't worked since then, and as I write this it's a little over a year.

By this time I was beginning to get pretty worried. Not only did I feel like crap, I was so tired and confused all the time, and prone to emotional outbursts. It was only with difficulty that I could see all the neurological symptoms for what they were. I guess thinking about your damaged brain is like trying to see your own eyes, or something like that.

Here I was, the primary wage earner in our family, completely unable to work, and I couldn't even think clearly enough to know what to do next. Luckily income wasn't a problem in the near term, as short-term disability kicked in. I remember thinking "I'll just take a couple of weeks off until I figure this out." Right.

At this point, I could barely do one thing at a time, and then only very slowly, with deliberate concentration. My brain would just freeze when confronted with complexity, or multiple inputs, like someone talking to me while a television was playing nearby. My wife would ask me if I wanted chicken, beef, or fish for dinner. I would freeze puzzling out the answer, and finally I'd dazedly reply "I dunno". She'd push a bit for more information, and I'd snap "I don't have any idea. I don't know, and I can't know." Whew. Did I mention my wife is a saint?

Additionally, at this time I started walking with a shuffling, limping gait, and would continually bump into door jambs, bite my cheek or lip when chewing, and cut myself when trying to use a kitchen knife for a simple task. I'd find myself standing in the hall, having started to walk from the living room into the bedroom, and had gotten "stalled". I'd have to think how to will my foot to move to get going again. All in slow motion.

I had constant numbness in parts of my hands and feet, and most of the time I had head, neck, or these big slab-like back aches, and I could barely use my hands, as my thumb joints were so sore.

My vision worsened, things were blurry, seeing double. My eyes would tire very quickly, as if my brain was unable to tell the eyes how to focus correctly. I started using reading glasses all the time, where previously I rarely used them. But I'd usually find myself reading the same sentence over and over, trying to keep my place on the page, and trying to remember the context. Eventually I'd just give up, exhausted.

Next up: Poking, prodding, and hard drugs