One Year Later...

It was one year ago today that my life changed forever, and today I am obsessing about it. I often say that I want my old brain back. Now it's been one year and 2 hours since I felt like me...

I woke up with a horrible headache, so bad that I called The Bug Man and told him that I couldn't take calls that day. I'd barely hung up the phone when my body stiffened and started to jerk, I lost my ability to speak, lost control of my bladder...

What happened then is anybody's guess. And that's all it was, was a guess. Of all the doctors I saw after that, the best explanation I heard - the one that seemed to be supported by the various head scans - is that there were some sort of spasms that temporarily blocked the blood supply to part of my brain. (This would seem to make sense, apparently, given that I also have prinzmetal's angina.) They called it a "cerebrovascular event" which means, basically, they don't know what happened. This, in contrast to a "cerebrovascular accident", where there is a clot or rupture within the brain...

For several hours that morning I was unable to speak, except for one sound: the "oh" sound with an "n" - oh/no. No matter what I was thinking, no matter what I wanted to say, no matter how I wanted to answer their questions, that was all I could say. It was terrifying. But what was strange, is that I could still nod yes or shake my head no - so my brain, whatever was happening inside of it, was still understanding and thinking. My mouth just didn't work. And after a couple of hours, I was able to (slowly) type on Pete's computer, "can think". I wanted him to know that I was hearing and understanding, because the hospital staff were treating me like I couldn't, and talking about me like I wasn't there, but mostly because he and Casey looked as terrified as I felt, and I wanted to reassure them. And actually, about an hour after that, while my head was in a machine that was scanning my brain for about 20 minutes, talking to God (mentally/spiritually), with headphones on and music playing, that I did regain my ability to speak. A neurologist later explained that both fervent prayer and music are known to help the brain's connections, and he wasn't surprised at all that my speech came back at that time...

Meanwhile, Pete brought my computer to the hospital the next day, and I discovered that I could only type gibberish. I've been an amazingly fast and accurate typist since high school, but what was in my head didn't make it to my fingers. I typed the right letters (for the most part) but all in the wrong order. This is something with which I still struggle...more on that later. [After completing this, I thought I'd come back to this part to add that, as I was typing it, at least 25% of my words were the wrong ones, different from the word I was thinking, and that every 2nd or 3rd word or so had to be backspaced and retyped because of that, or because the letters were typed in the wrong order. It has taken me over an hour - over an HOUR! - with no interruptions except to try to corral my chaotic thoughts every so often, as a result...]

I won't go into the massive, totally debilitating headache that followed me for months after that week in the hospital, that's a topic for another post in itself. But it was always present, along with a horrible vertigo (when I walked I was like a "beebee in a boxcar" according to Pete), for months afterward, smothering every part of my recovery and life. I went home with swallowing/choking issues, a vastly decreased vocal range (less than an octave), and that horrific nerve-pain-type headache and vertigo - but maybe worst of all were the changes in my thinking. My brain was in chaos. I felt like my wiring had turned into a pile of tangled spaghetti. More than one thing going on - like the TV on while someone was talking to me - made it impossible to focus on either one. I couldn't do math in my head, something else I'd always been a whiz at. I lost control of concentration and focus, meaing it wouldn't come even with my greatest efforts...

Today, a year later, I'm thankful that it wasn't worse. At the same time, I'm changed. People who know me best and spend time with me tell me it is very obvious; people who aren't with me a lot don't seem to notice as much. I haven't regained my organizational, multitasking, or mental math abilities, although there's maybe a 25% improvement over those first days, which happened in the first 6 months afterward - no more improvement since that time. And there are holes in my memories; places I've been, TV shows/movies I've seen, people I've met - they're all new to me again now. Some events from before I remember, others are gone, and there's no obvious pattern to which stayed and which left...

I had to give up my successful business as a result of the changes, and still grieve over that. When I type, I constantly have to backspace to rearrange the letters in my words, or replace a word that I typed with a word that I'd MEANT to type; none of that shows up in my writing, because I can fix it. Speaking, when I use words in the wrong order, or use the wrong words, it's more obvious because I can't. And the mental chaos remains when I can't control my environment, until the scrambled thoughts and input in my brain just become such a tangled ball that I can't tell them apart anymore, rendering me unable to process any of it.

How all of this affects my life from day to day, or even minute to minute, often makes me wish for my old brain back, the one that worked. Most of the changes don't "show" and people, except those who live with me or know me best, think everything is fine. I wish it was. And only I know how different things are, really...while my family (mostly my husband, daughter, and sister) sees the results of the differences...

Finally, music. My greatest fear was that I wouldn't be able to play my keyboard anymore, and I was afraid to even try when I first got home, because if I'd lost that, I wouldn't be able to stand it. When I finally tried, I found that I could still read notes and play them as they were written, although not always in the right order at first of course, and things like dynamics and style took more time to add to my playing again - but it required conscious thought and enormous concentration in those early days. I'm told that I sound fine now, when I play. It doesn't feel the same to me, I don't believe - no, I KNOW that I'm not where I used to be. Occasionally it feels close - 95% - when I'm alone, there are no distractions or other things adding chaos to my thoughts. Because playing is about the music, not the notes, which are supposed to - which used to - flow off the page and through my eyes straight to my fingers without conscious thought or concentration. Now I need to think about things, analyze what I'm seeing on the page and make it - as opposed to let it - blend with the feeling parts of music...and of course conversation or even activity around me makes my brain struggle with that. Often I don't even bother, until I'm alone or at least the house is quiet.

So yeah, I'm thankful, and God is in control of my life since I'd totally sold myself out to Him years ago. I wouldn't be human if I didn't remember how things used to be and hate the changes in how I am now. I haven't seen anything positive in myself as a result, but have been enormously blessed by my family especially...how Pete, in addition to his job, did all the cooking and cleaning and shopping and laundry and pet care in those early months, when I could do nothing at all, even walk a straight line, and took me to appointments and devoted himself to me and my care and taking care of everything with our home and pets...and how Casey, just 3 months into her new marriage, going to school and working full-time while sick constantly and unable to keep food down while in the early stages of growing a baby, stayed at the hospital with me 24/7, sleeping in a chair next to me, helping in every way that she could and being there for me no matter how unpleasant it got...and how Gwen, not only in the early days but in the coming months, gave up so much time with her family and her life downstate to spend helping, especially advocating when I couldn't get answers, and eventually getting the answer to the always-present, God-awful headaches and vertigo, thereby giving my life back to me.

Today I'm obsessing about it all, I can't stop thinking about it, it's not a day to celebrate obviously but it is a day to contemplate, and while I'm overcome with all kinds of feelings today, I'm also still trying to make sense of the whole thing and can think of little else...