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Queer Rock Love

A Family Memoir

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hepatitis c

Why I Hoist My Own Tree

Last weekend, I scaled the mountain of musty furniture, bicycles and plastic bins in our garage. When I found what I was looking for—a tattered red duffel bag the size of an average middle schooler—I pulled and heaved and cajoled it down from the heap and into the house. It would have been easier with a second pair of hands, but setting up the Christmas tree has become my personal ritual, something I prefer to do alone.

xmastreeI’m writing by the glow of the tree right now. It’s the same white tree that I wrote about in Queer Rock Love, the one I bought at Target when Katy was so sick from interferon that she could barely get out of bed. After 10 years of service, the old tree is frayed and yellowish, but I can’t part with it.

Before Katy’s illness, I had a tendency to pin my happiness on other people. If I wanted to try something new, I needed more than my partner’s approval—I needed total buy-in. “It was stifling but safe. As long as other people had the power, my desires remained conditional and my failures rested on someone else—this is what I would do, if only…”

When Katy got sick, I was faced with a choice: I could tether myself to her bedside, waiting for her to feel better and meanwhile roiling with resentment that life was passing me by, or I could try to balance caretaking with my own needs for independence. But that meant venturing out on my own, without Katy as my constant cheerleader and companion. It was a prospect that filled me with dread. If you’ve read about the episode with the Christmas tree, then you know the pitfalls I faced trying to disentangle my own desires. I was hyper sensitive to any hint of disapproval, always eager to believe that family responsibilities were too demanding for me to follow my dreams or that I probably wasn’t good enough or strong enough to try.

I’ve been thinking about all this after watching Aziz Ansari’s Master of None, which I enjoyed immensely—until the last two episodes. As a queer person, I don’t have a lot of patience for straight people bemoaning how trapped they feel by heteronormative timetables of career, marriage, parenting and death. Oh, what’s that? You feel like you’ll be stigmatized if you don’t follow the script? Join the club. (Did you notice that Dev’s lesbian friend, Denise, basically dropped out of the last two episodes? I think it’s because the presence of a queer character would have undermined the whole pretense that there’s only one way to do committed relationships.)

I know that being in a relationship is not for everyone, but I’m also skeptical of the idea that marriage equals death. There’s a strain of misogyny in that tired old tune about suffocating domesticity. I’m more interested in thinking about a relationship as a creative crucible. Learning to balance my needs and desires with the needs and desires of another person has forced me to define my dreams and to become purposeful about pursuing them.

Katy’s in the next room now, working on the 5′ x 5′ painting that has consumed her imagination for the last two weeks. The white lights on the Christmas tree lend an iridescent glow to the layers of paint that she builds up and then scrapes down to begin again. I’m inspired by the depth of her concentration and her willingness to try something new. In a little while, I’ll read this blog post to her, and she’ll tell me about her latest experiments in color and form. I’m glad the circle of light is wide enough to hold us when we’re separate and to warm us when we come back together.

Spoiler Alert: CURED

If you’ve read through the acknowledgements for Queer Rock Love, then you know there’s a brief addendum at the end:

In May 2015, Katy started taking Harvoni, a new med for hepatitis C. As of this writing, her viral load is undetectable.

The treatment ended in July, just as the book was going to print. We had to wait another three months for the final verdict. Two weeks ago, Katy’s doctor called. “You’re cured!”

That night, Katy and I just stared at each other. “Whoa. I can’t believe it,” we said again and again. Katy lived with hep c for more than 30 years. She endured multiple rounds of pyrrhic treatments that left her body worse off than before. Our entire relationship has been circumscribed by the fear that her time was short.

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Of course, any of us could be felled any day by a bus or a bomb or a malignant cell. I believe that we should live each day as if it was our last, but I’m not actually very good at it. When Katy was at her sickest, I spent a lot of my time fretting over future funeral bills instead of enjoying the time we had left.

Eventually, Katy’s death and I came to a kind of detente. It was always there, a fact of life, but it didn’t steal quite so much from the present. Now I wonder what lessons I’ll carry with me in this new time horizon?

The technical term for Katy’s prognosis is SVR, which is short for “sustained virologic response” (not to be confused with SRV, which is short for Stevie Ray Vaughan, whose life was cut short by a helicopter crash).

Sustained virologic response sounds like a status update, not a final verdict. And I’m okay with that–perhaps even more comfortable than I would be with a more triumphant-sounding diagnosis, which might leave me looking over my shoulder, worried about getting sideswiped by some unforeseen circumstance.

Right now, I feel happy and relieved and grateful for the health insurance that made this treatment possible. (Thanks Obama!) I’m so glad that Katy doesn’t have to live with all the shame and fear that were hep c’s constant companions.

Sometimes I dare to imagine what a longer future together might feel like.

My heart feels like a hermit crab tentatively extending a tentacle beyond its shell.

 

 

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