(Icon of the descent into hell, 16th century) This week my email box has been filled with Easter messages from various Christian organizations who have me on their email list, including one from Tim Simpson of the Christian Alliance for Progress. His message was about "living out Easter by embracing Good Friday," a day of "death, desolation and despair." My eyes hovered over "despair" and I found myself starting to cry.
That's the right word alright. I had to admit that's what I've been feeling lately. The last week or two I've had this sort of melancholy hanging about.
(I suppose one of the good things about being sick is that I'm catching up on all those movies I missed.) While the movie has a happy ending, I couldn't help but feel like I've been living through my own version of Groundhog Day. I get up when Meals on Wheels knocks on my door to give me my dinner around 11 am to noon.
If it's a good day, after I put the meal in the fridge, I say my prayers, do some yoga, eat some breakfast and tidy up my apartment a bit before checking email and talking to A.. More often than not, I go back to bed after putting my dinner in the fridge.
A few hours later I get up, say my prayers, eat some breakfast, check my email (in bed), talk to A. (in bed), heat up my dinner (and eat it in bed), and watch television and/or a movie (in bed) before taking a bath and going to sleep. I spend anywhere between 18-23 hours a day in bed.
Except on Tuesdays and Fridays when I go to acupuncture (then it's probably 15-17 hours). On Mondays my caregiver comes to do my laundry and other housekeeping. This last week I slept through most of the two hours she was here.
The only other variation is when I have a doctor's appointment. Oh, and on major holidays somebody picks me up to take me to my mom's for a few hours. It's boring the hell out of me.
On Monday I watched a PBS documentary about David Vetter, the real Bubble Boy. He lived in an "isolator" from the moment he was born until just a few days before he died and the isolation in which he lived took an enormous toll on him psychologically. As his psychologist talked about how she encouraged him to use his imagination to escape his bubble, I knew how dreary it was for him to come back down to real life.
And I know what it's like to listen to researchers who follow their own imaginations seeking a cure only to come woefully short of anything useful. My godfather (who finally started his own blog -- yay!) says that the muse is a whore; she promises everything and leaves you with nothing.
Thursday I was reading the blog of Laila El-Haddad, a journalist in Gaza (for those of you who think the Israelis just left Gaza and have nothing more to do with it, think again). In this post she talked about her friend B. who was accepted to the graduate program in engineering at Birzeit University, often called the Harvard of Palestine, only to be repeatedly denied a permit to travel to the West Bank by the Israelis.
It reminded me of my own study trip to Birzeit which was cut short by a parasitic illness, and I could empathize a great deal with B. Her education and career plans were cut short by Israeli "uber-wardens" while mine were cut short by CFIDS/ME. Yesterday as I laid in bed after putting my Styrofoam box of tuna casserole in the fridge, I tried my old trick of focusing on the things I'm grateful for.
But even some cells are padded. I have many beautiful nieces and nephews. But they don't understand why Auntie Michelle can't play with them anymore -- or worse, have no memories of when she wasn't sick.
But we can't be together half the time because I'm too sick to get on a plane and go to Europe and visa regulations only allow him to come here for very finite periods of time (marriage may have worked -- sorta -- for Gerard Depardieu and Andie MacDowell in but it isn't that easy in the real life world of the INS aka Homeland Security). I have hundreds of books that I've bought over the years that I haven't yet read. But instead of keeping me company, they just taunt me as I've been too weak to read.
I lay here in bed staring up at them like a horny guy getting a lap dance. Novels, historical works and books on religious philosophy just lounge provocatively before me sneering, you know you wanna read me, don't ya bitch I've tried to be the brave sick girl. When people express sorrow that I've had to drop out of school and am mostly housebound, I usually shrug and say "it is what it is.
" But in my attempt to be stoic and Zen-like, I've ignored the voices of rebellion that finally came gushing out of me.
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