Posts Tagged 'anniversaries'

May 12: Ugh

Lately, I’ve been feeling kind of blue, and while I have some pretty decent reasons to be depressed (the possible end of my relationship with Betsy; the possible end of Barnum’s service dog career; the random bouts of vomiting; the pain, exhaustion, and migraines; the fact that my outdoor powerchair is once again completely dead), I’ve been through worse. The weight of my gloominess seemed out of proportion to what is actually going on. It felt like the bad stuff felt worse than it really was.

Eventually, some pieces started to fall into place. I realized that a lot of it is grief.

The first wave hit when I got a recent batch of books on tape through the Library of Congress Talking Book Program. (I love the Talking Book Program — if you have any sort of physical or cognitive print disability, definitely check it out.) On the same day, two books arrived, bringing with them an emotional sock to the gut.

One book was U Is for Undertow: A Kinsey Millhone Mystery, by Sue Grafton. The other book was Fearless Fourteen (Stephanie Plum #14) by Janet Evanovich. Both of these are the latest installments in series, so I was excited to see them in the catalog. I didn’t think at all about how I’d feel when I started listening to them.

My former best friend, who “broke up with me” a few months ago, introduced me to the Stephanie Plum series. They are really funny books. They literally make me laugh out loud. Probably the only other author who does that is David Sedaris.

When I was reading a Stephanie Plum book, I’d call my friend, and we’d talk about our favorite parts, reciting lines to each other. It was always fresher in my mind than hers, because she got print books, from a regular library, so she could read them as soon as they came out, whereas it usually takes at least a year for them to be recorded. But still. Forever more, I will associate the characters, the New Jersey accents and locales, and the ridiculous situations of the Stephanie Plum books with my friend who I love and miss and will never speak to again.

Sharon ten years ago, with very long, dark hair, and a big smile, sitting on a couch next to a person in a blue sweatshirt whose face is blurred out.

I had to make her anonymous for this public blog.

The other book is even more heart-breaking, in a way. My dear friend, colleague, mentor, and former boss, Norman Meldrum, liked the Kinsey Millhone series. Norm got very ill in May, 2007, just a couple of months before I was diagnosed with Lyme disease.

A ruddy-faced man of white/Native heritage stands in the snow with a small dog on a flexi-lead. The man wears a tweed cap, tinted glasses, a brown carhart jacket, and gray baggy pants. He has a white beard and mustache and stands a little stiffly, his hands curled under, a stoic expression on his face. The dog is a Havanese, about 12 pounds, with curly white hair. She is stairing at Norm quizzically. They are surrounded by smooth snow, a lawn presumably, and in the distance behind are evergreens and treeless deciduous trees.

My friend, mentor, colleague, activist Norman Meldrum, with Beatrix Underfoote

It was actually in May that he ended up in the hospital with what turned out to be multiple pulmonary embolisms, caused by a medication he was on for one of his disabilities. It took the doctors a long time to figure out that that was what was wrong, though, because almost nobody ever gets multiple embolisms and survives. For the first two hospital stays, the doctors thought it was some form of treatment-resistant super-severe pneumonia.

In fact, the friend who stopped speaking to me lost her husband to one pulmonary embolism in the space of an hour, a few months before Norm went into the hospital. Norm’s doctors and nurses all told him, again and again, how lucky he was to be alive. That got old really quick. Particularly because not too  long after all these pronouncements about his luck, he was dying a slow, agonizing, painful death.

When I found out Norm had been in the hospital and almost died, I was shocked. Then I got Lyme. Then Norm went back into the hospital. Then I got sicker.

We both kept getting sicker and sicker, until around two years later, I began to turn the corner, and Norm died. During most of those two years, I’d call him at the hospital or at his home, and we’d talk until one of us was too sick or tired.

Almost never was I able to speak to Norm using my voice, because I developed vocal-cord apraxia due to Lyme and babesia. So, when he was in the hospital, I called him by HCO relay, which was a real pain in the ass. A lot of the time, there were technical issues and garbling, but Norm was very patient. I sent him a TTY to use when he was at home, and he was one of the very few people in my life who was willing to use it. Unfortunately, by the time I had a TTY to send to him, he was usually too sick to operate it.

The irony is that we had such a close, loving relationship, even though we’d only ever spent time “in meatspace” twice. All the rest of our communication was by email, and then, when we both got so sick, by TTY relay.

The worst irony is that I started to get better right after he died. At his memorial service a few months after he died, I attended by speakerphone. I hadn’t known if I’d be able to speak for myself, so I had written what I wanted to say and emailed it to someone else, in case they’d need to read it. But I was able to speak. I actually felt guilty about that, because I hated that I could talk about him, but I hadn’t been able to talk to him.

I miss him so goddamn much.

It’s not just that we both read the same author, either. It’s that this was a series (starting with A Is for Alibi), and the last book that came out while Norm was alive was T Is for Trespass. I read it before him, and it gave me the creeps.

The book is about an older man who is abused and gas-lighted by his attendant. At the time I was reading it, Norm was in and out of the hospital a lot. He was at other people’s mercy a lot. When he ended up at one of the worse facilities, I worried about how they were treating him.

As it turns out, I should have been more worried than I was. This “nursing home” that Norm went to before he died was not a place he chose. He had to go for his insurance to pay for his previous round of hospitalization, and though he knew he’d be dead soon, he didn’t want his wife and children financially destroyed by his medical bills. I had a feeling things weren’t good there, just from the limited things we managed to say when I managed to speak to him. But I wasn’t able to talk to him there more than once, and briefly, which worried me, in itself. The staff seemed really weird about giving him a phone. I didn’t like it, but there was nothing I could do.

I found out after he died that the staff there abused him. They taunted him, told him he wasn’t really sick, that he was faking, while he was dying. They’d put his wheelchair too far away and make him try to get to it on his own. They’d pretend they were going to support him and then, whoops!

He worked so hard to get out of that place. I knew it was bad, that he wanted desperately to leave, but I didn’t know how bad. My stomach turns over whenever I think of it. I feel such helpless rage.

I was already thinking of Norm when I read the previous book in this series, and I said to him, “You might not want to read this. It’s pretty intense.”

Then, he read it, and he said it didn’t bother him.

Then he ended up in that hell hole of a nursing home. Then he went home, we talked a couple more times, when he could barely stay on the phone a minute, and then he died.

Sharon is standing in a parking lot, adjusting the tubing on her oxygen cannula. Next to her is her large, 4-wheeled mobility scooter. In the foreground of the picture is Norm, sitting in a lightweight wheelchair with an electric blue frame. He is facing mostly away, so we see his side, back and profile. Hes wearing a tweed cap and glasses, and has a white fringe of hair under the cap and white beard. Sharon is wearing a very bright, lively red wraparound skirt with yellow flowers and a black, long-sleeved top. Her dark hair is very long, swept to the front. Between Norm and Sharon stands a young, distracted Gadget, in a summer haircut. He is not wearing any gear, just a rainbow collar and a black leash. He is standing splay-legged, looking into the distance.

A happier time, May 2003: Norm, Gadget, and I congregate in Augusta, Maine, long before Norm's emobolisms, my Lyme, or Gadget's cancer.

Now the series  has continued without him. That’s the part that really gets to me. Here’s “U,” and next will be “V” and on through “Z,” and Norm won’t be around to read any of them.

So, here I am in the lovely month of May, with trees budding, the birds returning, the days getting longer, and May is the month that I got bitten by the tick that gave me Lyme. May is the month Norm started the long, slow process of dying.

Then, two years later, May 12, 2009, Gadget was diagnosed with, and started chemotherapy for, lymphoma. He actually went into the emergency vet on May 9, a Friday. Something looked wrong with Gadget’s eye, and I went debated whether he should go to the ER or not. It seemed worse, it seemed better, then it seemed worse again.

My voice wasn’t working, and I couldn’t get out of bed. I remember having a long conversation with Betsy by TTY about it, because she didn’t understand what was so worrisome, and why I was debating taking him to the ER versus waiting and taking him to his regular vet on Monday. I didn’t like sending him without me. I have had bad experiences with vets screwing up because I couldn’t be in the hospital with my dog. Like the vets who misdiagnosed Jersey’s glaucoma repeatedly, costing her one of her eyes.

But, eventually I decided he needed to go. I talked to the ER by relay ahead of time and told them all my questions and concerns and asked them to call me as soon as they’d examined him. Then, my PCA did take him to the ER, and they called me by relay and said, “It’s a good thing you brought him in. Gadget has lymphoma.”

A close-up of Gadget's face, turning to look over one shoulder, covered in a bright-orange vest. His muzzle is wet, his beard dripping water. His ears are cocked. In the background are blurry green leaves.

Though I love this picture of him, I can't help but notice the ring around his iris, part of the change to his retina, vestige of lymphoma.

Because I was on relay, the vet couldn’t hear me crying. I was totally in shock. They ran thousands of dollars of tests to determine for sure that it was cancer and to stage it, and to rule out other diseases (which turned out to be important, because Gadget had an extremely high Lyme disease titer, which we were later able to treat). Even though the results wouldn’t be in until after the weekend, we took the next available appointment with the oncologist that they had, which was Tuesday, May 12.

On Monday, May 11, I called to find out if the needle aspirates showed lymphoma, and they said they did. I had already started researching canine lymphoma the previous night. I went to our first oncology appointment armed with a dozen questions. Even though the vet answered them all very thoroughly and kindly, I really had no idea what I was in for.

As with Norm, at first Gadget seemed “lucky.” He responded to chemotherapy right away. He went into remission within a few weeks, and — combined with treating his Lyme disease — he seemed to have been granted a reprieve. He was working and playing — and eating better than he ever had in his life!

Gadget, with gray, very close-cropped hair, sits with his tongue hanging out, looking at Sharon. He has a tiara of curled ribbons of many colors on his head, with a big bow in the middle. Behind him is a blue kiddie swimming pool, filled with water. Sharon sits in her powerchair with black sunglasses on, one hand holding a cake in her lap that says, "Happy Birthday Gadget" in peanut butter and biscuits on white icing. With the other hand she is gesturing to herself as she talks to Gadget. In the background is a green lawn and people in lawn chairs.

The birthday boy awaits cake. This was a very good day.

Then, luck took a turn for the strange — Gadget got a second cancer, mast cell cancer. Initially, it was deemed cured by surgery, and then, like Norm, one thing after another started going wrong. In fact, like Norm, the problems showed up in his lungs, with what seemed to be pneumonia. Then it turned out to be more than pneumonia — pneumonia caused by mast cell cancer raging throughout his body.

Then, it just became a matter of trying to take the best possible care of him I could, until the end. Sometimes it seems like life is just a long series of losses, a war of attrition. Or maybe it’s just the time of year.

I keep telling Barnum he is not allowed to get sick. He is not allowed to die.

– Sharon, the spirit of Gadget, who was ready to go, and Norm, who was ready to go, and Jersey, who was ready to go, and my anonymous friend, who didn’t tell me the reason, and Barnum, warm, furry body and wet tongue and beating heart and possible SDiT

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