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

16 Responses to “May 12: Ugh”

  1. 1 Mary Lou May 12, 2011 at 11:17 pm

    Oh, Sharon… my God you can write so vividly … the Kinsey Milhorne series is one of my favorites, I’ll always think of your friend Norm when I reread T is for Trespass (I re-read books a lot,lol) … and I am also VERY fond of Stephanie Plum … gosh, life just seems SO unfair sometimes, God’s plan seems very obscured …

  2. 2 Kat May 13, 2011 at 1:58 am

    Hi Sharon. I’m so sorry.

    I lost my best friend a couple of months ago too. I kind of know the reason but she was a drama queen and so… well, I guess what I’m trying to say is that even though my life is a lot calmer now, doesn’t make the loss of her friendship any easier.

  3. 3 Kathy May 13, 2011 at 8:41 am

    I’m sorry. That is a long haul of sad, bad things happening. You are so smart and so strong in your writing (that’s the only way I know you) and you just cope with things. I don’t get the feeling that acknowledging the grief makes you feel diminished and that’s awesome. You dont often write about this part of you (damn near never!) and I appreciate you letting us in. I don’t know if this is good, bad or inappropriate but I hurt for you.

  4. 4 Amy Petrakis May 13, 2011 at 9:33 am

    Hi Sharon…I’m sorry this is such a difficult time for you! Every time I read one of your posts I’m struck by what a wonderful writer you are; I miss our “talks” on the Lymphoma board. You, Bettina, and the countless others carried me through during my most difficult time. Like you, this is a terrible time of year for me; full of ghosts and bad memories. Hunter’s decline, my mother’s decline, the terrifying diagnosis of my son’s MS, all occurred during this time. I feel like life is about surviving a series of losses, so deep and profound you may never recover, at least for a group of us. There are those that have had relatively few losses in their lives and they seem to walk through it unscathed and forever optimistic. Thank you for articulating your grief so well, I feel like it’s ok for me to own mine. I can cry for you, even when I can’t always cry for myself. You are an inspiration to me!

    Much love and peace,
    Amy P. and Angel Hunter

  5. 5 brilliantmindbrokenbody May 13, 2011 at 1:43 pm

    That sounds like it was quite the emotional suckerpunch. I’m so sorry that life isn’t playing nice with you. If you want to talk, you know where to find me, yeah?


  6. 6 thecorazonwriters May 13, 2011 at 10:13 pm

    Oh, Gadget. I didn’t even know him and I miss him. I hope the grief passes through you and is gentle, dear friend.


  7. 7 Karyn May 14, 2011 at 11:29 am

    Ahhhh Sharon
    I am so sorry for all of this. I know all too well what its like to have a month clouded with so much grief and loss. May is also when I lost Adam, my niece at 5 months of age, my grandfather, and the month that I watched Met slip away from the wonderful service dog he was into this creature that was afraid of everything and everyone. What is it with the month of May!
    I guess my point in sharing this is that I can relate to the heartbreak you are going through from so much loss. For me, in person friends are pretty much something that other people have. MCS took that away from me. Here, the only thing that can keep my sanity intact is my dog and even he at times works on tipping the scale to insanity LOL

  8. 8 Martha May 14, 2011 at 1:44 pm

    That is sad. Sometimes loss just piles on us; it’s like a boulder, and no matter how hard we push, it is hard to lift. If you ever want to talk, you have my email. Maybe you would like the Southern Sisters Mysteries by Anne George. NLS has four of them on tape and two of them in downloadable format. One is a retired English teacher who has been married for forty years and the other has had three husbands, tried to open a country western bar, and is involved in crazy skemes.

  9. 9 Sharon Wachsler May 28, 2011 at 11:41 pm

    Thank you very much, Martha. I only now realized I never responded to these comments. I think at the time, I was just taking them in, and not in a place to to reply.
    I will have to look into those mysteries. I’m always looking for new authors who write “easy listening.” Most of the time I read for pure escapism. grin.

  10. 10 Sharon Wachsler May 28, 2011 at 11:44 pm

    Yes, I was one of the few lucky ones among my MCS friends who had friends who I could actually see in person. Well, no more.
    And yeah, it’s weird about May. A lot of people on the lymphoma heartdog list had diagnoses in May. Someone else on the angels’ list had a May 12 diagnosis anniversary, too — and it’s a small list!
    When I was attending a CFIDS support group, a long time ago, we discovered a disproportionate number of us got sick in the fall, in October, actually, which is when I got sick. Then the national organization did a survey and found that most cases struck in the fall. I have no idea what the reasons are behind these things.
    I know what you mean about the dog keeping you sane and/or crazy! Been there!

  11. 11 Sharon Wachsler May 28, 2011 at 11:45 pm

    Thank you, Jeanne. This was so sweet.

  12. 12 Sharon Wachsler May 28, 2011 at 11:45 pm

    Yes, I am behind on email, as always, but I am definitely planning on emailing you.

  13. 13 Sharon Wachsler May 28, 2011 at 11:48 pm

    Thank you, Amy. It’s good to “see” you. I miss you and our talks, too, although I find myself unable to even open the bag that still contains all of the notes and charts and books about Gadget’s vet appointments and symptoms and canine cancer, etc.
    I am very glad if what I’ve written gives you more breathing space to own your grief. I, too, find myself more able to empathize and feel emotions over others’ grief than my own. I still am struggling to let myself feel it. Or against letting myself feel it. I’m torn, basically.

  14. 14 Sharon Wachsler May 29, 2011 at 12:08 am

    You dont often write about this part of you (damn near never!) and I appreciate you letting us in.

    Kathy, I was so surprised to read this! I thought that was mostly what I write about! I have heard from some people that they often have to steel themselves to read my blog — or don’t read it — because it’s too painful.

    I know I started writing After Gadget talking much more about my grief, and then I got involved in writing about Barnum and other things. But lately it’s become clear to me that I really need to get back to writing about grief, both for my own sake, to be able to grieve fully, which I have never done, and to provide resources for others, because I have several friends and friends-of-friends, suddenly, who are dealing with grief around pets or assistance dogs, and they are finding so little in the way of support and resources. This has inspired me to get back to working on the grief resource pages, here.

    Also, when I check my stats, by far the most common search terms that people use to get here are related to ticks and Lyme, but the second most common is a mourner’s Kaddish or Jewish mourning for pets. So, there is clearly a need for grief information that is not provided by other pet loss sites.

    I don’t know if this is good, bad or inappropriate but I hurt for you.

    I find it touching and comforting. Thank you.

  15. 15 Sharon Wachsler May 29, 2011 at 12:11 am


    I’m very sorry to hear that. I have other friends I’ve met online who’ve lost friends, too. I guess it’s not uncommon, but for me, once I was close to someone, I stuck like glue, so it’s been totally shocking to me. I can’t adequately describe the loss, because “friend” really does not begin to cover it.

    At any rate, I hope the increased tranquility in your life provides some comfort from the pain of your loss.

  16. 16 Sharon Wachsler May 29, 2011 at 12:13 am

    Thank you, Mary Lou. Yes, I reread my favorites a lot, too. (I’ve pretty much memorized all the books in the Harry Potter series. Stephanie Plum IS hilarious. Makes me wonder if everyone in Trenton really does carry guns and go to the funeral parlor as their main social event!

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