A (Belated) Valentine

To my Super Spouse, my caretaker, the love of my life, my Michael.

Image description: Michael standing on a street, in front of a tan stone wall. The street has "DOCTOR" written on it in white paint. Michael is wearing jeans and a gray rain jacket. He is cupping his chin, and has white hair and glasses on.

It’s Valentine’s Day! Okay, actually yesterday was Valentine’s Day! I usually don’t really care about Valentine’s Day—when I was little it was an onerous responsibility (having to get cards for everyone in my class) coupled with crushing dejection when whatever crush I had didn’t seem to recognize how special I was. Then it was an opportunity for boys I did not like to buy me flowers, while whatever crush I had STILL didn’t seem to recognize how special I was. Then I met Michael, when I had just graduated and moved to the city, and we occasionally wrote each other long-distance love poems, but otherwise laughed V-Day off, and it became mostly a time when my dad sent me flowers. But then he died (my dad, not Michael) and V-Day became a time to give the daughters candy. If we remembered. Once I’d been sick for a few years, we started to celebrate in little ways, going out to dinner, buying little gifts or maybe a couples massage. And so here we are.

Still Standing—Because of Him

This year I’ve been thinking about my Valentine a lot, not least because I read a lovely tribute to ANOTHER spouse, written by another MS-er, and it struck me as both true and an easy way to get out of buying Michael a present. (I kid! I let him buy me dinner at our favorite restaurant last night!) Also, I write a lot about Michael being Super Spouse and what that really means is that he is my caretaker, and that shift has been . . . something I wrestle with it constantly. Ugh, CONSTANTLY. (What is that from? I have this random memory of saying, “Constantly. Ugh CONSTANTLY,” about things and I know I was riffing on something but I cannot for the life of me remember what. Oh well.) We’re watching THE PITT right now and just finished an episode where the caretaker of a patient has disappeared, out of exhaustion and fright. I understand a bit of what helping me can entail, and I want to acknowledge it.

So anyway. Where was I? Oh right, my valentine for my Valentine. When I am overwhelmed by feee-fees (as the kids say), I tend to default to lists. (At my father’s funeral, my sister and brother wrote really heartfelt eulogies to read out. I wrote a Top Ten Things My Dad Taught Me list. Number 2 was “There’s no such thing as a funny racist joke.” TRUE!)

Okay, without further ado, here is my list of Five . . . hmm. Five Traits? Identities? Roles? that make my life so much better than I ever dared hope when I was first diagnosed. Here we go.

5. Super Spouse. It is easy to say that your spouse or love or partner is a super hero, but I have been amazed by how, as my physical needs grow ever larger, so does his capacity to meet that need. Carrying all the luggage and my wheelchair and me. Finding help when I need it. Flagging down transportation. Driving me all over creation for hours to get to the doctor/rehab/body work. Picking me up when I fall down again and again and again.
   
   

   There are Unknown Unknowns

4. Caregiver. Sure, this might be conflated with Super Spouse, but there are so many everyday things that a caretaker does that go beyond just being a good partner but aren’t as remarkable as being a superhero. Making dinner every night. Letting me sleep in each morning and bringing me coffee so I don’t have to fight to carry it and wheel my chair while stiff from sleep. Going grocery shopping and carrying the laundry baskets and getting up to house-train the puppy and taking my dishes to the sink when I’m done eating and buying me a sexy shower chair so I don’t fall down and picking me up again when I do fall down. Absorbing all the ways that I have morphed from full partner to occasional burden and never making me feel bad.
   
   

   What's So Funny 'Bout Guilt, Shame, and . . . Being Needy?

3. Writer. Letting me read work that has not yet been seen by anyone else, and asking me to edit it. Trusting that my editing skills have not diminished as my disease has progressed, and making it possible for me to believe it, too. Reading my writing before I send it out into the world, and helping me present my best self in the genres I choose to explore. Writing poetry that reminds me of why I like poetry, and also occasionally writing love poems for me, especially ones that don’t ignore my spastic legs.
   

   And Now for Something (Not So) Completely Different

2. Explorer. I have spent the last 18 months—more!—traveling the world in a damn wheelchair and I couldn’t have done it without a partner who looks at what we’re facing and says, basically, Bring it. When we were preparing for Antarctica, I was scared. I started off nervous and then, after the phone calls from the medical director, wherein he all but asked me directly, Are you out of your goddamned mind? I was full-on freaked out. And it really was too late to turn back, to pull out, but I turned to Michael and said, “I think I can’t do this, go without me.” And he looked at me and said, “It’s going to be hard but we’re doing it together. This is us traveling. We will figure it out and make it work.” This attitude has made me as close to fearless as I can get while seated; it reminds me of who I used to be, and suggests maybe I haven’t changed that much. It makes me want to do everything because I’m not doing it alone.
   
   

   So Polar Deserts Aren't the Most Accessible Places

   1.Boyfriend. I mean, okay, Michael hasn’t been my boyfriend for almost 13 years, but lover sounds ooky and husband sounds too staid. I’m talking about when you’re crazy about the other person and you keep trying to tell them they’re cute or pinch their ass (hard when that person is in a wheelchair) and otherwise get the other person to know that you’re excited to see them and they’re your lobster (to quote Phoebe from Friends). I lurch around or, more often these days, wheel around and crash into things. I drown in big sweaters that were super cute when I wore them over skinny jeans bur now just look slouchy and shapeless in the chair. I sometimes don’t have the spoons to even think about a shower, let alone actually take one. And when I do, I use a sexy shower chair with arms on it. But he still wolf-whistles when I come into a room, and watches appreciatively as I get ready for bed, and who knew being objectified could mean feeling loved absolutely?

There you go. Here’s my valentine to my Valentine. Thank you for indulging me. Next week I’ll get back to raging about the rest of the machine.