Bedridden days, needing to go to the ER to beg for an IV, having to call a sub to cover my finals, not getting to say goodbye to my students, unable to drive, missing more work and events, unable to leave the house, comically starting a small fire in my kitchen because I’m too ill to cook. The many adventures of being kind of broken. The plot twist had a predictable ending. I expected to end my first year teaching full time in celebration. With a bang, not a whimper. I should be plowing through my last bit of grading so I can get the party (summer vacation) started, ready to fully participate in the first time I have ever had summer off since I’ve started teaching. I was supposed to be strong and ready. Things have gone downhill again. Something has shifted. A slight turn. The jump to the next lily pad. The last six months may have been the worst since this thing started. I long for some normalcy. Some simplicity. To do the things I took for granted not so long ago.
It may have been unspeakably brutal, but I did make it to the end of the semester. I had a student nominate me to be honored at an event and I had students tell me honestly how much they enjoyed working with me. I saw improvement in their work and I helped to get them there. I feel triumphant. I was a sick, lump of a person often, but I still managed to make a difference. I know that most people would have left a long time ago but I pushed through.
I got a walker—despite putting off that moment for many months. But I feel triumphant to finally have the courage to let go of my pride and do what I have to do to get around. It has a seat! I’m going to get a cup holder for it too.
|Mel and I rocking some slow jams|
I played music. I sang some of my own music in front of people two weeks ago, playing a short set. I have been waiting for that moment for two years. Singing and performing has become extremely difficult because it is so taxing on my system. It’s really difficult to sing when breathing is such a struggle, especially the way I like to sing, with every pore in my body. I was bedridden the day before we played. But I did it. I feel triumphant. I hope to do it again soon because I have new songs I’ve written that I’ve never played. I want to reclaim my life as a performing songwriter.
2014 thus far has been little else but ups and downs. Triumphs tempered by setbacks. But this is the reality of chronic illness and a rare illness at that.
I don’t consider myself unlucky or trap myself into thinking about fairness. I try not to think in such relative terms. I feel blessed that I now have two months to try to regain my strength, reclaim some of my lost identity and passions, talk to my doctors, spend time with my wonderful patient husband, and figure out the way forward. Ready for some good days, some joy, and some air conditioning.