Trying to maintain

Ray unpacking after we moved into our second apartment.
Ray unpacking after we moved into our second apartment.
If Ray had lived, today would be his fiftieth birthday. Unfortunately, Ray died when he was 33. I try to maintain a good perspective on it. A bit more than three years before, the doctors had said he had maybe 6 months to 2 years to live. He’d beaten their expectations. It hadn’t been pleasant for him. There had been surgery, chemotherapy, and various side effects of various drugs.

When we’d met, he’d been this tall, thin (skinny, really) grinning goofball with a mop of curly hair usually dyed in multiple colors. As his illness had destroyed his lung tissue and caused painful lesions to erupt on his bones, making movement ever more difficult and painful, he’d gained weight and lost all that manic energy. The chemo didn’t make all of his hair fall out, but it got very, very thin, and he hated how it looked. The pain had slaved his sleep schedule to his pain pills. During that last year he would take his pain pills, wait for them to kick in enough to let him sleep for a couple of hours, then wake up and try to occupy himself for about four hours until he could take his next dose, sleep for two more hours, wake up and wait, et cetera.

Once that pattern developed, he arranged the schedule so that we could go to bed and fall asleep together, then he would quietly write or play on the computer while I slept, until time for the next pills, so when my alarm went off to get up and get ready for work in the morning, he’d be asleep in bed next to me. He was trying to give me the illusion that we had a normal schedule. He’d take a couple of naps while I was at work.

I don’t know how he did it, not getting more than two hours of sleep at a time.

He’d always loved music. A lot of my fondest memories of our time together involve him singing along to his favorite songs. Or us dancing. He was always a much better dancer. If he would have let me, I would have just stood back and watched him give into the music and just let all the joy out. But he wanted us to dance together, so he’d drag me out there to clumsily try making vaguely rhythmic movements while he danced.

Until we couldn’t do that any more.

He’s also always loved silly movies, especially animated kids movies. And reading. I remember how shocked I was to find out that this enormous Winnie the Pooh fan who also was a reader had never read the original books by A.A. Milne. So I had bought them for him. He came to like them as much as he’d loved all the Disney versions.

Christmas was always big and flashy and more than a bit tacky. We both felt that there was no such thing as “too many lights” when it came to Christmas decorations. We’d acquired so many ornaments over the years, that even then we started putting up more than one tree (we found places to put small trees in every single room… and the living room usually have four or so), we couldn’t fit all of the ornaments on them. Which is why we had started doing themes, instead of just putting everything out.

Christmas ’96, after we’d moved into the larger place, he asked if we could forget about themes. He just wanted each of us to pick out our favorites from all the ornaments we had. I sometimes wonder if he suggested that because he thought it might be his last Christmas. He would never admit that to me. He was always trying to maintain that illusion of normalcy, an illusion that this was a battle we would win.

That was the way I had looked at it: we can beat this.

Ray, who had struggled with depression his whole life, had faced it more with grim determination. That, of course, was another complication: trying to keep the interactions of his anti-depressive meds from messing up all the other medications.

Some weeks after the second round of chemo there are a lot of tests and appointments with a couple of his doctors. The specialist in charge of his case gave us a very cautiously optimistic diagnosis: the chemo had worked well enough, that we might be raising the estimate of his life expectancy to something like five to ten years.

One night, maybe two weeks after that prognosis, we spent the evening talking about how we planned to decorate for Christmas that year, and what we were going to cook for Thanksgiving, which was less than two weeks away, and we were supposed to host his mom, one of his brothers and sister-in-law. The main color scheme we’d been planning for a while was pink. But he had recently decided that he wanted to do Winnie the Pooh. Just a few days before, when he’d sent me out on a shopping excursion to try to find a replacement for a kitchen implement that we’d damaged, I had found this cool set of Victorian style ornaments: pink ornaments with images from the original E.H. Shepherd illustrations for the original Winnie the Pooh books. So I was feeling very smug about how I was contributing to his artistic vision.

My bedtime rolled around. I went around the house, turning out lights, making sure things were locked up. He put a few things away and headed to bed. The last thing I remember us saying, as we snuggled up, was “I love you.”

A few hours later, I was awakened by the crash in the next room.

My memory is a bit of a mess after that: Seizure. Frantic call to 911. Paramedics taking him away. Me running to the hospital. Making phone calls from the pay phone in the waiting room at the emergency room. Then the next few days I and various of our loved ones sitting vigil at his hospital bedside as he lay in a coma. And me reading Winnie the Pooh to him when I could.

I really don’t spend all of my time reliving that last bit. Except at this time of year.

I try to focus on the good memories. I try to maintain a grateful attitude for the years we had together. I think about things like the little discoveries I made after. There was a secret stash of Christmas presents for several people. One was for me. Inside it was a paperback book. An anthology of short stories. Two of them were by him. He never told me. Before I opened his presents (I waited until Christmas), I had found the file folder with the correspondence and the contract. He’d sold the stories more than six months before his death. He never told me. He apparently wanted it to be a surprise on Christmas morning.

See, he had never shown anyone any of the stories he wrote, until after we had been dating for a while. He had been very nervous, since I earn my living writing and editing. He told me to tell him honestly what I thought. I introduced him to the world of books about how to write, how to check your grammar, et cetera.

He worked at it until he had gotten a few stories published in amateur ‘zines.

He didn’t even tell me he had decided to submit things to professional publications. He didn’t tell me about the letter from the editor putting together the anthology, asking if he had more stories like the one he’d sent. He didn’t tell me any of it, because he wanted it to be a surprise.

He was like that. When I had asked him to marry me, he didn’t react quite as I would expect, saying, “Maybe.” He was actually a little irritated. He finally told me that he had planned to ask me—he had rings purchased and had picked a date he was going to spring it on me and everything. I’d spoiled his plan. When I suggested we could combine the asking, he said, “Maybe,” again. And we left it at that. Sometimes when I have told this story, people ask if, when he did ask me, with the ring and roses and balloons and glitter, if I even jokingly responded with “Maybe” back.

I did not. I gave him a very emphatic yes. Because falling in love with Ray had been the event that made me stop lying to myself that I was bisexual. Falling in love with Ray was completely different that any of the ways I had felt love for any people I had known or dated before. Falling in love with Ray was completely and totally different than anything I had felt for my then-wife (which was how the whole, okay-I’m-not-bi-after-all epiphany happened).

So, no, I did not say maybe. Because there was no way I was letting him get away!

The only thing that has ever compared to falling in love with Ray has been falling in love with Michael. I have had the incredible luck in my life to fall in love with a man, have him promise to spend the rest of his life with me, have him keep that promise… and then while I was trying to put my life back together after losing that love, meeting another wonderful man, falling in love, and astonishingly he loves me back. Given that, you would think it would be easier to maintain a good perspective. And as I said, most of the time it is.

This was taken at our final combined birthday party.
This was taken at our final combined birthday party.
I always start getting moody with little bouts of depression as his birthday approaches (and since his birthday was two days after mine, and since things like the anniversary of our first date was only a few weeks before our birthdays, it begins as soon as I realize it’s September). And it doesn’t let up until sometime in November. So far, this year, it hasn’t been as bad as last year. Of course, last year it was far worse than it has been for some time.

It so happens that I’m meeting a bunch of friends at this cool place called AFK Tavern this afternoon to celebrate my birthday. I didn’t pick this day because it’s Ray’s birthday. It’s just the closest Saturday to mine.

But I’m really, really glad that I’m not spending today alone, you know?

I need a little help. I’m trying to maintain…

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