Calorically Yours

In October 1997, I was a single mom in Illinois and had just joined an online hearing loss support group called The Say What Club. Back in those days it was an email listserv, and one of the ‘welcome to the list’ emails was from this guy, Dave, in Michigan. In my introductory email, I explained that I was deaf in one ear, and had just recovered from a terrible ear infection in my other ear (which had some hearing left). During the ear infection, my ‘good’ ear was plugged with antibiotic-soaked cotton and I was temporarily totally deaf. It terrified me and made me want to learn sign language. (Side note: Even now that I truly am totally deaf, I still have never been able to officially learn sign language. I know a few signs and the alphabet.)

Dave offered to send me some sign language books and videos, and we started to exchange emails. He always called me ‘kid’ and I had no idea what he looked like. “What a nice, friendly old man,” I thought. We were good buddies – he was smart and funny and, well, a smart-ass.

A few months after I joined, I offered to build a web page with photos of the SWC members. People started mailing their pictures to me so I could scan and upload them. (This was 1997, okay?!) Then Dave mailed his photos.

‘Hey!’ I thought. ‘This guy is not that old. And he’s pretty cute. Hmmm.’ (He was nine years older than me, BTW.)

We kept talking through email, then IRC chat (where, yes, we did slap each other with wet trout), and finally phone calls – that was a big deal for two hard-of-hearing people. Months passed.

On March 14, 1998 I was supposed to go to a concert at the House of Blues in Chicago, and my friend Renee bailed at the last minute. The kids were at their dad’s and I was sitting around, bored, when Dave called me. When he found out my plans had been canceled, he casually said, “Why don’t I come over?”

So I took a huge chance, meeting a ‘stranger’ from The Internet. He got lost on the way to my house (this was way before GPS, and I think he printed out a map from AltaVista – ha!) and just as I gave up hope and assumed he wasn’t coming, the doorbell rang.

My son took this photo; summer 1998, the first time Dave met the kids.

We clicked instantly and had a wonderful time. He introduced me to his WebTV, which he’d brought along. (“I’ll never need a computer, this has everything I need.” Famous last words.) He came back for another visit two weeks later, the next time the kids had a weekend with their dad. On March 28, we had our first official date. We went out for Chicago-style deep dish pizza (his first time trying it) and then to see the movie Titanic in the theater.

1998, ALDA convention
(Association of Late-Deafened Adults)

After that, we always celebrated on March 28 with deep dish pizza. Twenty four years later, I am carrying on the tradition with a deep dish Lou Malnati’s pizza that I had shipped to the house. The things we do for tradition!

Here we are in 2018, after Dave’s diagnosis

Advertisement

Different but the Same

I thought I’d talk a little bit about a couple of different things: caregiving, and how the grieving process has been for me. It goes without saying that everyone grieves differently, and so many things have an impact on your experience, not the least of which is who you are grieving, how they impacted your life, and how they died.

Because we knew Dave’s illness was terminal pretty much as soon as they told us he wasn’t a candidate for surgery (resection or transplant), I started grieving right away. I had 3-1/2 years to confront what I imagined the future held for both of us. And although the reality of it still hit way harder than I ever could have dreamed, I think having that time kept me from becoming completely consumed with grief and despair after Dave died. In a way, I had worked through some of it at that point.

One thing I did after he died was sign up for a daily grief and bereavement newsletter that I found on the funeral home’s website. It’s been amazingly helpful, and a lot of days the message touches on an emotion I happen to be dealing with right at that moment – it’s been kind of weird (good weird) like that. On a funny note, I mentioned to my funeral arranger that I’d signed up and found it really helpful. She had no idea they even offered that on their website! I showed her the email I’d received that day, and she made a note so she could mention it to future people when she counseled them.

I’ve been reading some books too, mostly memoirs, to see how other people grieve. One thing that came up a few times, in these books and in the newsletter, is that the five stages of grief were actually not meant for grieving people; they were meant to apply to people dealing with a terminal illness. I had no idea! I’d kept thinking about those stages and wondering which one I was currently in (and also wondering why I never felt anger). This is an excerpt from the newsletter:

Elizabeth Kubler-Ross published the landmark book On Death and Dying in 1969, which proposed a model that included 5 stages: denial, isolation, anger, bargaining, depression and acceptance. Although deeply embedded in our culture, this model has been misapplied to those in mourning. It was really intended to describe the adjustment process undergone by terminally ill patients in relation to their own death.

I’m almost done reading a book called Dream New Dreams. There was a lot I could relate to in this book, which was kind of rare. The other books talked about things like all the people that dropped by and how to manage all the food you’ll get, which did not happen to me at all. One book was written by a girl grieving the death of her father, which is a totally different thing from losing a spouse.

But this woman’s husband had pancreatic cancer, which spread to the liver. A lot of the symptoms he dealt with were things Dave went through, and I could really relate to some of the caregiving aspects she mentioned. I didn’t talk a lot about the caregiving part of Dave’s illness when he was alive. For a long time, there just wasn’t much I had to do.

As 2021 began, he was becoming more nauseous, so my focus was on finding ways to help him deal with that. Then he had all his teeth pulled for his dentures in April 2021, so I spent a lot of time planning meals he could eat while his mouth healed. As soon as he healed from oral surgery, he went into the radiation treatments. He had already lost weight from not being able to eat normally, and once he had the liver radiation, he just lost his appetite.

My days were consumed with watching him waste away, and trying desperately to get some calories into him. The author of this book mentioned the same thing, plus worrying as each new side effect popped up. Dave’s legs and feet became horribly swollen, and nothing brought the swelling down. I bought him compression socks, showed him how to lay down with his legs and feet up against the wall, etc. These things helped temporarily, at least.

She mentioned the slow, slow walks to hospitals and doctor’s offices. I had forgotten about that. Dave lost all of his energy and endurance. Depending on how he felt, I would either drop him off at the hospital entrance while I parked and walked back to meet him, get him a wheelchair, or we would take one hesitant step at a time to all the appointments he had.

He had fluid in his abdomen that made it hard for him to breathe, just like this lady’s husband. Dave had a drain placed in his abdomen, and I became the person who drained the fluid from his belly on a daily basis. Draining this fluid, though, threw his electrolytes off balance. He was on sodium pills, which I’m sure didn’t help his swollen legs and feet. It just seemed like we’d get one thing under control and something else would get out of whack.

I was the one keeping track of his medications (he took different pills morning, noon, and night). I researched possible reasons for side effects I was noticing. His hands started shaking, and his voice became so hoarse that most people couldn’t hear him. (I could read his lips, thankfully.) Writing it all out sounds so horrible but these things came up slowly and we tackled them as they did, and I just absorbed the new caregiving tasks into my daily routine. I never stepped back to take it all in and realize how dire the situation really was. I just kept thinking eventually we’d get on top of all these side effects and Dave would feel better.

Dave was never the type to complain or to ask for help, and this short period of caregiving gave me a chance to feel like I was doing something to help him. I mean, this was a man who wouldn’t even let me go get him some Kleenex if he had a cold!

Reading this book made me kind of sit back and remember what last year was like. It actually felt good to read along and nod and completely relate to this stuff, like I wasn’t so alone even though it was all in the past now.

But of course, her situation was not mine. Her husband had a lot of money and made sure she was set financially after he died; money was not even a consideration for her. Dave couldn’t do that – he didn’t even have life insurance because he’d had leukemia in the early 90s and nobody would insure him. When he died, our already minuscule income was cut in half. (I did notice that all of the books I’ve read were written by people who were financially well off, actually. I guess us poor folks don’t bother to write memoirs about grief!)

She also had three young children to care for, and I was lucky enough that my children were grown and on their own after Dave died. They also immediately moved when they found out her husband’s situation was terminal. Dave and I considered this, but then he was doing so well that it didn’t seem as urgent. When he got sicker, we did look at smaller places, townhomes, and quickly realized we really couldn’t afford to move. I had to make sure wherever we moved was a place I could afford on my own income, and even an apartment was pushing it. A townhome, with association fees, was out of the question. (The mortgage here is actually less than the rent on my apartment in 1985.) When Dave grew really ill, I quietly worked up a budget to be sure I could afford my home even without Dave’s pension.

This post is really meandering, isn’t it? I’m mainly thinking out loud, in relation to this book I’m reading. Thinking about how we all have different life situations, different grief, but we are so similar as well. There’s no right or wrong way to grieve. I can sometimes stand outside myself and observe how my grief has changed in the past six months. I have long stretches where I feel close to myself again, something that last fall I thought I’d never achieve.

I’m almost halfway through this first year without Dave, and I sometimes wonder if I should be doing more. Working toward something? Mostly I just get up every day and hope to find a few things that will make me smile. So far in my life, things (love, jobs, big transitions, houses) seem to come along when the time is right, and the less I try to influence the outcome, the better things go. When I’m frantically trying to make something happen, it never works.

So I feel … lazy? … just kind of waiting things out. But also hopeful for the future.

Connections

A couple weeks ago, my local library posted a new club that was going to meet the first Wednesday of every month: the Make and Share Cookbook Club. I mean, could anything be more perfect for me? (The only other thing I can think of is an in-person sign language class, which I have always wanted to take and have never been able to find near any of the towns I’ve lived in. I’ve done the online classes and no, I want to do this in person. Always on the lookout for that!)

So, I clicked the ‘interested’ button and then tried to talk myself out of it. Probably everyone that went would go in pairs or groups with other people they knew, and I’d be the odd man out. What if everyone was wearing masks and I couldn’t understand them?

I decided to email the lady putting the group together, to ask about the mask policy and express my interest. I told myself that if masks were optional, I had to go. I really have to get used to putting myself out there.

She wrote back, was very kind and accommodating, and told me that masks were optional. She was also happy to meet with me one-on-one to explain the club.

So I went. I arrived early because I wanted to check out a book first, and also find out where the club was actually meeting because the post didn’t say. It turned out that the girl in charge was also the one who checked my book out for me, and we both recognized each other. She said this first meeting was really more to pick up the cookbook and answer questions, and not so much a formal meeting. We went to a room to chat more about it. I figured I would just meet the other members some other time.

As we talked, people started filtering into the room. Eventually there were eight of us seated around the table, and it turned into an actual meeting. And I’m so glad it did!

As we talked about how the club will work, we all started sharing little details about ourselves. (It was all women and no men, which kind of didn’t surprise me.) There was definitely a vibe of “I’m so glad to be meeting people and getting out of the house” from pretty much everyone. A lot of us were new to town, and there was a wide age range, which I was happy to see.

We eventually went around and introduced ourselves, and I found myself just fascinated and impressed with every woman there. All from different situations but all friendly, kind, and excited to be starting this group. And not everyone was an experienced, fancy baker or expert in the kitchen, so there wasn’t a competition type of vibe to it.

I was so happy that I didn’t feel on the outskirts, or like the only person who didn’t know everyone else. I think because so many of us were fairly new to town, we were all kind of in the same boat and really eager to meet new people.

We’re baking from a different book each month; this month’s book is called My Little Michigan Kitchen and I have a list of recipes I want to try. I’ve already made one (Chicken Purses) and it was fantastic, so I have high hopes! I’m not sure yet which recipe will be the one I make to bring to the next meeting in April. I want it to be easily portable, and not something that needs to be kept warm. On the other hand, I don’t want to make something similar to someone else or, for instance, a dessert if everyone else is making a dessert. We’ll be starting a Facebook group where we can share which recipe we’ve chosen, and that will probably help me decide.

I came home from the meeting on such a high. Apparently I was desperate to meet new people, more than I realized. There was a little of that euphoric relief you get when you’ve done something you were nervous about and it turns out to be way better than you expected, and also just general excitement because I really love to cook and I think this is going to be fun.

So I may not have found a grief group, but I did get myself out there and made some connections!