Surprisingly, my favorite body memories are not sexual, despite being able to easily relive even the most brief of encounters. No, my favorite body memories are not those of a sexual nature, but are memories of muscles being pushed to their limits in sheer physicality. Memories of a body unlimited in its range of motion, and moving without pain.

I remember what it was like before I was this disabled, when I could still dance. Feeling the bass in my head and my gut as my feet slapped the floor, my torso twisted and my arms swung. What it was like years ago when I was able to go rock climbing, when I buried my fingers into the holds and felt my skin abrased and my arms strained as I tried to pull myself vertically up. There are memories of horseback riding; of gripping the leather saddle between my thighs and the horse between my knees, pulling on the leather reins with sore wrists. My back and ass always hurting from never quite getting the canter correct.

I have fast memories of the cold wind burning my face and the snow freezing my body as I sledded down the hills in the winter. Short memories of being flipped off a raft that had been attached to a fast moving motorboat; the quick sting and the shattering sensation as though every bone had broken is now something I’m so used to feeling that this body memory is the least novel of all for me.

My favorite is swimming in the ocean, fighting against the tide. Every wave breaking against my body like it’s trying to break me down, but my body holds firm. I would duck under the waves or swim over them, which would allow the sensation of the rushing water to push its force upon me, then cause a small back draft behind me. I love the memory of the feeling of being pulled back under when a wave would go back out to sea, as the ground under me would rush out under my feet and I would lose my balance in the world. I love remembering sluicing through the waves and fighting the riptides, feeling nature pull me in the opposite way of safety. My skin would sting from the salinity, my feet would hurt from the pebbles; I’d often have brushed up against a jellyfish or two, but I’d still persist. The water slapping against my thighs as I made my way deeper in, then feeling the way the water seemed to part for each time the hand brought the arm down into a stroke — that’s the most peaceful feeling possible for me, yet it’s also a memory of action.

Memories of my body in action are almost all I have now.

I remember myself in crutches too many times to count. All the times with the cane, attempting not to lean on it even though I needed to. And this past year, my time in the wheelchair.

It’s amazing, how active I was when I was young: I was a complete tomboy, always at gymnastics or skating, running, swimming, biking, or playing football and softball. Then I got sick and had to modify my life. A little yoga and swimming are about all I can manage these days. I miss moving so much. Sometimes I just sit back, close my eyes and remember something my body used to do. I get so involved in the memory that I can feel each individual muscle aware of when it used to be needed. I remember being taut and trim, feeling able to almost fly. I bring those feelings back and relive it all vicariously…but I’d rather just be doing it again, now.

Of all the things I miss, I don’t miss my mind the most — I miss my body.

You caught my eye right away, the very first time I met you. I don’t know why or what it was about you, but something drew me in. That same thing continues to do so. I’ve been thinking about you a great deal. All the general cliches, like the way your eyes light up, how you hide your smile by bowing your head down and putting your hand over your mouth. How you’re quiet, stumbling over your words as you try to find ones to say to me that don’t sound as ridiculously infatuated as this writing.

I’ve been thinking about how it would feel to have your lips against my neck, your breath on my shoulders, your face against mine. Your hands on me: in my hair, on my face, holding me against you. My fingers in your beautiful hair.

Lying against each other, on fresh cotton sheets, windows open and the morning breeze blowing in on us as we fall asleep after talking all night.

More days like this one, please.

Thank you.

- A satisfied consumer.

On my mom’s side of the family, it’s always seemed like he’s the only one who has ever understood me, or whom I’ve had anything in common with. He’s a big reader (up until a few months ago he was still reading several books per week), a history buff, a lone wolf type, but the kindest, most understanding person I’ve ever known.

***

There’s always so much I want to write about him, but I never manage to because I always start crying and can’t hold it back long enough to get the words out.

***

Medical science says that during their worst flare-ups, FMS/ME patients experience the same intensity of pain that late stage AIDS and cancer patients feel. That factoid used to bring me comfort because it made me feel acknowledged, at least in the medical world. But now, looking at my grandfather’s collecting pharmacy at home, with much of it the same prescriptions that I’ve sometimes had to use and still use, and watching him deteriorate more and more every day, I feel no comfort. I just feel wild despair and anger.

He’s so frail, only about one hundred pounds now, and god, the cancer is probably about ten or more pounds of that. It’s literally eating him alive. He’s still at home. Hospice comes twice a week. I visit three times a week. My family, being my family, won’t talk to me about what any plans are for what’s to come. I was furious for what they did to my grandmother against her will, putting her in the nursing home and force -feeding and -medicating her. Despite my family saying they don’t want that to happen to them, they’re going to do it to my grandfather. They’ll say they don’t have a choice.

I’m watching this poor man be in so much pain, every day, all day long. Real fucking pain. Not just localized pain, but actual “body turning against itself and registering as self-destruct” pain. If I had something to pray to, I’d be praying that he would die in his sleep, and soon, because I don’t want him in a home. I don’t want the pain dragged out. If he’s in this much pain now, what’s it going to be like in a month? Imagine living every day with that much pain. I don’t live every day on a 10.

Other cultures dealt with death far better than we deal. I wish we were apart of one of those. I feel like my heart is flooding over and breaking up.

It was her writing that kept me from becoming completely anti-religion as a teenager, that made (and makes) me admit that while I might not believe in Jesus or God, I believe in the old Christian concepts of love, forgiveness, faith, hope, and support.

It was her writing, particularly once I dropped out of school, that gave me a lot of first exposure to certain scientific and philosophic concepts.

It was her writing that made me want to write.

“Why does anybody tell a story?” Ms. L’Engle once asked, even though she knew the answer.

“It does indeed have something to do with faith,” she said, “faith that the universe has meaning, that our little human lives are not irrelevant, that what we choose or say or do matters, matters cosmically.”

Jane Jacobs last year, Madeleine L’Engle yesterday, my grandfather in a few months. (Grandfathers always played a particularly formative role in L’Engle YA books, too.)

I often hear grief described as an empty feeling, but when I feel what I would consider to be grief, it feels like a full, even spilling over feeling. Like a lot of water trying to pass through a small half-tube, but like in New Orleans in August of 2005, there’s too much water for such a small space, so it passes up and over the sides until there’s no sight of where the sides were.

I suspect this feeling right now is more about my grandfather than L’Engle, but that’s okay, too. When the time comes, I’ll reread my battered copy of A Ring of Endless Light and make peace. But not yet. There’s still some months to go.

1. Alternatively replaceable with (more) “confident,” “responsible,” “reliable,” “energetic,” and/or (less) “gimpy,” “fatigued,” “grumpy,” “bitchy,” “self-destructive,” and “hurtful to others”?

…

Define “happy,” grasshopper.

…

I’m finding myself in a real low, hitting me out of nowhere, and it wasn’t until thirty seconds ago that I knew why. Oh yeah: it’s my birthday in a week. That fucking mile marker that shows another three hundred sixty-five days have passed in which I have sat on my ass and not moved a fucking inch further from where I sat down at the age of fourteen.

…

Sometimes, I feel like a nut. Other days, I remember to take my pills, and shut up.

I’ve got a two year lease on my new home. Time to get serious. I’m the age now that I was when my mother gave birth to me. The state of Maryland’s rehab program wants me to set up an education and rehabilitation plan that will put me on target for where I will be when I am thirty-five. When my mom was that age, she was a teacher’s aide, I was ten, my brother was six and my sister was five. I plan on achieving my B.A. and getting my tubes tied by age thirty, and achieving an M.A. and a Ph.D. by age thirty-five. In what, I don’t know. The state of Maryland, as it turns out, doesn’t offer undergrad in urban planning or urban studies, so I have to bullshit something. Maybe do a writing major; who knows? Something to make the state happy. A happy state from a compliant recipient.

But in the meantime, I’m on the Wellness track. I now have a personal trainer. That’s my luxury — not cable tv, not a Netflix account, not drinking alcohol or going to shows or eating out — I’m now paying $150 per month (read: every extra penny after housing, utilities, medical) for a personal trainer who specializes in the physically gimpy. What with obesity being all in your genes, both my parents being obese, my medication causing me to have gained twenty pounds since last year, and my doctors telling me I’m pre-diabetic, I figure it’s about time. Three days a week in the pool or in the cardio room using the elliptical machine or the treadmill; my coccyx growth has me banned from using anything else. Only land class I can take is Tai Chi. Essentially, I’m doing all the old people exercises with the retirees, but moving three or four times faster than most of them. It’s more boring than sitting in the waiting room of my over-heated rheumatologist’s office, but as yet the gimpy can’t be choosers. There’s talk at my gym, though, of a chronic illness exercise class starting, so that could be nice. I’d like to do weight training even though I can only do five pound hand bells; there’s got to be some people in the nearby community with MS or RA or similar conditions who would also be interested. Maybe we could convince the gym to let the class be for non-members, since the population is so specific and the facilities largely unusable for those further debilitated (for example, the locker rooms and the indoor pool are not wheelchair accessible).

Also scheduled on the Wellness agenda is an actual physical education class at my school for this summer. Monday through Thursday, starting at 10:30am in July. Despite having been a tomboy whose favorite classes were P.E. and Reading, and who played on multiple sports teams while growing up, I haven’t done anything athletic since, um… other than swimming indoors, nothing since 1995, I think. 8th grade gym class. It’s terrifying to me when I realize I’ve essentially been sedentary, hidden away, squirreling and sick and sleeping, for twelve years now. Pretty much just going nowhere, doing nothing, except sitting on my ass and reading. It makes my head swim and my stomach hurt just thinking about. So I’m continuing with the proactive approach — personal trainer for fitness, DORS counselor for overall progress, disability counselor at school for academia needs, social worker for personal issues. Micromanage and get it fucking done.

Upcoming schedule is looking like:

Summer Semester I
elementary algebra (5/29-7/22)
technique of reading and writing i (5/29-6/27)

Summer Semester II
elementary algebra (continues)
technique of reading and writing ii (7/09-8/15)
water exercise (7/09-8/09)

Fall Semester
anthropology
photographic expression i w/ lab
intro philosophy
intermediate algebra

As such, I’m having an impromptu one of my own. I need a little thankfulness and some celebration in my life, ‘cos this shiksa (my dad’s blood line is Jewish, not my mom’s) just scored herself a rent-controlled apartment.

Top floor, skylight, 900 sq ft, hardwood floors, two bedrooms, separate dining room, enclosed screened porch off the kitchen, iron-radiator heat, giant fenced-in yard, off-street parking in the back, four other units in the building, one block’s walk to dining and such, three blocks to Sligo Creek Park, bus stop in front of my house, in the hippie city of Takoma Park. Pictures to follow later this week. Moving as soon as HOC inspectors give the go-ahead instead of waiting until my lease ends here on April 30, as my downstairs condo-owning neighbor has taken to yelling “¡Usted puta!” up at me through the floorboards, and I’m sick of it. Let the people who buy this condo deal with her; I’m through!

Two more worries out of the way. Another half dozen or so to go.

Wine and matzo tonight.

EDIT, 4:42pm EST USA And my tax refund arrived just arrived today. Not bad for someone who hasn’t had a taxable income in four years. I’ve never had a check from the U.S. Treasury before (tax refunds while employed had been direct deposited), and I have to say, it looks so nifty that I look a picture of it.

How a gimp on public welfare barely scrapes by, puts 90% of non-rent, food, and utility bill money into medical costs and school, and gets a $30 tax refund after all the tax credits for education, health expenses, and the disabled, is a Mystery of our system that I will never understand. (But $30!!! That’s big money to me. I don’t have to buy the wine in the cardboard box; tonight, I can get a jug!)