Things aren’t usually vividly hard anymore. I’m generally careful to judge everything by where I was at my lowest, which can turn even the most limited of days into hope. That worst year or so was so truly, completely awful that anything that isn’t that becomes cause for celebration. Walking to the bathroom without trouble, and without having to call my husband in to help me back up? That is beautiful. Setting aside the timer that used to ring periodically so someone else could roll me over to prevent bedsores… These things give me reason to believe that life will be better for me someday, and that’s precious. It might not. I acknowledge that my hope comes from a place of determination and desire rather than statistics. This illness is more often a roller coaster than a ski lift. But it’s enough.
I don’t often break out in tears anymore, actively mourning for the things that I’ve lost. Early on there were so many times where I was faced vividly with such a new and completely intolerable set of limitations that it would take a moment just to get through the realization. I wanted to go outside, and I couldn’t. I wanted to have a snack, and I couldn’t. Being reliant on other people for such basic things was a brutal adjustment, and it got to me sometimes. The big things were hard (career, kids, vacations, goals, life plan), but in some ways the little things were even harder. More immediate. And at that time, the journey was generally downward. I had no idea whether I would be so trapped forever. My condition was very severe, and many people who get so low do not come back from it. Every day was worse than the last, and that’s a very difficult place to feel anything but lost.
I tend not to have those overcome moments anymore. Maybe there just aren’t that many new surprises to catch me off guard. They say that human moods are all about reaction to change, and I can see that holding true. If your current situation is better than it was recently, then you’re happy. If it’s worse, you’re upset. But after a while of anything holding steady, we go back to our baseline. Lottery winners get sad again, and people in poverty smile. The things that used to be so striking to me and served as vivid reminders of my lack of independence go mostly unnoticed now. I live on the couch. I don’t cook my own meals. I don’t wash my own hair. I don’t have many of the things that used to define my life. But it doesn’t stand out to me unless something draws my attention to it. Holidays and special occasions are difficult, because it’s almost impossible not to make comparisons to healthy years (someone else recently wrote a lovely post on this. I don’t know why it always surprises me how universal these feelings are, but hearing my own thoughts articulated by person after person still always strikes me somehow.), and now and then something will pop up and remind me this is not the life I expected. But in the day to day, if I can keep my thoughts confined to my own current reality, it’s not as bad as one might think.
But there are still days where things are more quietly difficult. Days where I hear a bit of a song I like in the background to one of my snippets of TV viewing, and I want to track it down and buy it, and am daunted by realizing how many years it’s been since I purchased a song. Days where I realize that I can’t actually listen to it more than a few times, because my head hates that sort of thing more than just about anything else. Days when it saddens me how silent my world has become. Days that I’m reminded of how central music used to be to my life, and of iTunes playlists and car radios and music degrees and singing and dancing and musicals and being on stage. Days when I think about how central music is to self-expression and it feels like losing a piece of my identity instead of just a song. Days when I sit for a moment and imagine myself dancing. And my heart aches for a minute with how badly I want more than that.
I still feel my limitations deeply. I’ve just gotten good at looking away.