I started keeping an informal diary/journal when Larry first had his stroke, mainly because I found that so much was happening so fast that I could not remember from one day to the next what was going on if I didn't write it down. At first I wrote in it every day, and the handwriting is very dense and cramped and anxious-looking when I go back and read the entries from those first weeks. As time passed, there were days when I wrote only a few sentences, or nothing. The writing loosened up and started to look more like my usual meandering scrawl that somewhat resembles my thought process - sentences start off purposefully, but then mid-way through the letters get a bit sloppy, and by the end of the sentence anarchy pretty much holds sway. Like looking up a word in a dictionary, but becoming distracted by all the other words you stumble across that are so much more interesting (and then I forget what I was looking up anyway, half the time).

Anyway. Here was my entry for December 31st:

"Dear 2008:

I'm still here, but you're not. Ha! I win. So long, and don't let the door hit you in the ass.

Love,

Janine"

What a terrible year. But, despite my best efforts I have learned a lot. Patience, and humility (some, anyway). How to grow a backbone and stand up to people that I'm intimidated by, when I know they are wrong (i.e., doctors, hospitals and such). Compassion - it really is NOT all about me. My universe was pretty small before Larry's stroke, and I confess that I felt like I was at the center of it most of the time. Larry's stroke has helped me to understand the value of service to others and to appreciate the good things I have, such as being able to walk, and read, and communicate. Doing what you have to do because you have no choice really does build character and make you a stronger person - whether you like it or not, which often times I don't. But I do it anyway, and over time it does seem to become less difficult.

I'm not by nature a "positive spin" kind of person. If there is a dark side to something I will usually find it, and dwell on it longer than necessary, and throw in lots of self-pity. Since Larry's stroke, I find that I am just too busy to do all of that (hilarious typo - I originally typed "busty" there instead of "busy" - in my dreams, I guess!). I've become a much more pragmatic person than I was before, and more interested in getting things done than in how they get done or whether or not everything is perfect. I don't care about perfect anymore. I care about Larry being comfortable and staying out of the ER and/or the hospital. I care about me being able to function at work and come home at night and still have a couple of hours to give to my husband so that we have some semblance of a life together. I care that my family and friends are still here and supporting us and have not deserted us, and count myself very lucky for that. I care that people with disabilities are so often invisible to the world, and I care about doing whatever I can to change that. I care that our healthcare system is so woefully inadequate when it comes to caring for long term issues like stroke, and I am not shy about telling people what Larry's stroke has done to our family and how much it costs us out of pocket to pay for his care, even though we've had insurance all our lives. People are shocked, because they have no idea that this is the reality, but they aren't shocked enough because it still hasn't changed.

Larry is about the same. He hasn't had any great improvements, and I suspect that his condition isn't going to change a whole lot going forward. It's been 9 months already, and he refuses to participate in therapy programs or do anything to try to improve his lot, so at best I can be glad that at least he's home and not in a nursing "home" (death home, if you ask me). He's very depressed and does not eat much, but does perk up when I come home at night and seems happy to see me. When the weather warms up I hope I can get him outside more and that he'll enjoy the spring time.

I hope that 2009 is better for all of us. Hard for me to be objective because 2008 was such an emotional trauma for us, but it seems like everyone is suffering through difficult times right now, and hoping that the tide is turning. I know I feel that way. The Chinese say 7 years of good luck, 1 year of bad - so if 2008 was the year of bad luck that should mean that we have 7 good years ahead of us, and I could not be more ready for that!!

xxx's and ooo's

-Janine