Non-binary birthday

Bre's Binary Birthday Cake, by Scott Beale/Laughing Squid on Flickr, licensed under Creative Commons

Yeah, my birthday’s coming up. Not the one in the photo – I’m turning 101100.

Why binary code all of a sudden? Because this birthday, all my birthdays from here on out, are anything but binary.

For some context, please take a moment to read this excellent op-ed piece by Adam Baer in the LA Times, on the nature of chronic illness today, and the feeling some people dealing with illness have – namely, the need to keep a positive outlook, sound strong at all times, and resolute in their determination to “beat this thing.”

My friend T sent the piece to me, for which I was grateful, but of course it made me stop to think. Am I also complicit in being perky-positive, in making things sound like they will be just fine? I certainly haven’t told anyone I am going to beat this thing. I know, as Mary Elizabeth Williams does, that our odds are… well, odd. Yes, I did wear a KILLIN’ IT t-shirt to radiation over a year ago. Was that wrong? It felt right, then.

I don’t feel like wearing the same shirt these days when I go in for checkups. There’s a reason for it, though – my treatment doesn’t feel much like treatment these days. It feels like a lifestyle. Which is precisely the point of Adam’s piece:

Chronic illness is normal. We have to get cozy with that notion and keep the medically stained from feeling cast out from society, left to wince and wonder in private until they’re ready for some grand reemergence.

I think more than anything, I’ve tried to present my situation, my very frustrating and very changeable situation, with mordant (and sometimes very dark) humor. Humor is what sustains me. Is that weird? Am I being insincere? I’ve been in the care of a therapist since July, and according to her, I seem to be doing pretty well. I sleep well and without anxiety (off steroids, that is – and I continue to taper off those).

So perhaps in my case, laughter is the best medicine? One of the hundreds of supportive messages I got on Facebook when I was first diagnosed with melanoma was something like, “Melanoma hates sarcasm – deride it, Deborah!” Indeed, that is precisely what I have tried to do.

But I get serious/sappy/sweet too. It’s pretty hard not to. I love this world, as fucked up as it may be, and the idea that I might wind up leaving it even half an hour before I was meant to does not sit well with me. So I’ve tried to leave a fossil record, here on the blog, of how much love I am fortunate to have in my life. How much love, affection, understanding, support. How many people who have been there when it was needed, sometimes in ways they could not even have anticipated as being important.

I’m looking forward to this year. I applied for a job today, and another one last week. My brain still works, my body is reasonably healthy. This is how to count your blessings when you have a chronic illness. You don’t skip over the basics. So the whole thing can take a while. But when you have a chronic illness, you have the time for that sort of thing.

PS I showed up for my checkup with Dr P yesterday and found an empty waiting room.

Empty onco waiting room.

It felt miraculous. For a moment I convinced myself that a great miracle had happened here, that all had been cured and I would soon be leaving as well. I even showed the photo to Dr P, who laughed with me. It was magical thinking, or it was a joke, or maybe a bit of both. Either way, it helped.

Living in infamy

Thinking About Sacrifice, by James Walsh on Flickr, licensed under Creative Commons
Thinking About Sacrifice, by James Walsh on Flickr, licensed under Creative Commons

It has been a weird day. I was up around 6 a.m., not terribly early, but earlier than I would have liked. I had a pretty bad latke hangover – last night the holiday started and we really celebrated. Fried food, chocolate, etc etc.

This is a big month around here – birthdays (in fact, by the Hebrew calendar it is mine right now, and by the English one, very soon), Young J’s birthday also very soon, Chanukah, and the general dopiness of December. Which so far is devoid of snow or even the slightest whisper of snow, and I hear from the kids that this is not okay with them.

At some point during the morning lull, after the kids left for school, before I showered and tried to make something of my day – I have a pending freelance Italian translation job to do, but the deadline is malleable – I paused and reflected that December 7 is not just any other day. It is one anniversary, but of many things – of murder on a massive scale, of provocation, of the inexorable sliding of a geographically isolated nation into a global war. Why does this all sound a little too familiar?

I’m worried these days. The world has me more worried for it than for myself. Because what is happening in the world will outlast me, and will be bequeathed to my children, my poor children, who have no idea what is happening in the world, beyond some extremely filtered headlines I spoon-feed them when I think they may be receptive and not overly anxious already. We do not subscribe to any current periodicals. We do not consume television news. And so the kids know what we tell them, and what little they hear from their friends. Young J knows that ISIS had something to do with a helicopter buzzing past when we went to N’s house once for Shabbat (it didn’t, actually).

It made me sad to see so little recognition of Pearl Harbor today on Facebook (which tends to be my primary interface with news headlines and the collective and individual psyches of my friends). It’s not just the doomed-to-repeat-it trope, it’s that in turning our backs on an event like Pearl Harbor, we miss not only the horror of it, the magnitude of the event and its implications – we also miss any type of courage or solace we might draw from the fact that there was a moment in time that it seemed like the world might just end for us, and that the fact that it did not is something that bears remembering and repeating. That does not mean there was not suffering. That there were not many more losses. That there were not very grim years to be gotten through.

I plan to read some of the letters described in this article, posted to a website by a family who felt that this time period was worth preserving, that there were lessons in the letters beyond just the interest of their own family. I’m so grateful to learn that these letters exist. In my own family, there is a collection of papers and letters that remain to be reckoned with, which I am pretty sure has value to researchers. I’ve made my own attempts over the years to try and get them to the right place, but it’s not in my hands for a variety of reasons, and it frustrates me. Not just as a librarian, but as a sentient being who feels that the ability to reach out and touch the past, or even to reconstruct something entirely from it, as in this Yiddish theater production J and I saw over the weekend (which was entirely reconstructed from archival materials), has merit.

I want to believe that I’ll leave my own papers in order when I go, but I’m not off to a very good start. I’m not entirely sure what to do with drafts of hundreds of poems spanning over twenty years, or with journals I may or may not wish to have read when I am gone. It would be good to have some advance warning that the final hour approacheth, so we could find a beach and build a big bonfire on it and have everything paper just go up in smoke. (Knowing myself, I would also insist that those gathered make an opportunistic s’more.)

Sorry this post is quite scattered. I’ve felt that way all day. Fugitive headaches, sleepiness, muscle aches, inability to focus. It’s most probably the steroids and the anti-seizure meds messing with me, but I’ve been pretty wrong before. Nothing like a sneaky, almost-asymptomatic disease to make you second-guess yourself. I’m seeing Dr P for a checkup tomorrow, so at the very least my bloodwork should reveal any anomalies.

I keep coming back to a weird exchange I had with a Con Ed worker who was halfway down a manhole today when I walked out of my building after a brief power outage (which happened, naturally, just as I was getting down to work on my translation project). I asked if it was his work that caused the outage. “Yep,” he said. He asked if the power had come back. “Yep,” I said. I asked him whether it was likely to happen again today. “Probably not today,” he said, and it was unclear if he was smiling or not. I didn’t know what to make of that uncertainty. “That’s great!” I said, mock-cheerfully, turned on my heel and went on my way.

No guarantees, no warranties, no year-long leases. I’m not trying to live like tomorrow is another Pearl Harbor. But I’m not trying to forget it ever happened, either.

USS Arizona Memorial, Pearl Harbor, Oahu, Hawaii, by Ken Lund on Flickr, licensed under Creative Commons
USS Arizona Memorial, Pearl Harbor, Oahu, Hawaii, by Ken Lund on Flickr, licensed under Creative Commons


I feel totally rejected. Dejected. Ejected. It’s my second day with my Decadron dose cut in half, obviously. This means I’m not functioning at top speed. In fact, I am barely able to do much at all, other than send emails to neighbors complaining about noise that began at 6 a.m. which they apparently did not cause (still no clue about where it came from), causing neighbors to reply semi-indignantly to the apparently incorrect accusation.

But I did do something today. Many things. J and I were both up early so we made a good breakfast for a weekday (J’s awesome home fries, and eggs). We had a reasonably nice meal with the kids. And I managed to get ready to go to the gym and went there after dropping off the kids. I let them just run in again – have possibly given up on the CGKC (Campaign for Greater Kid Civility), now that the steroids are on the wane.

At the gym I did some half-hearted abs things but mostly stretched, staring up at the ceiling and trying not to fall asleep on my foam roller. Wednesdays are a kind of a self-guided class so falling asleep would have been totally fine. Except I’m still stubborn enough to want to try to get my money’s worth. The gym owner, M, invited me over to try the latest thing – using a superball – yes, the super bouncy rubber thing that is the bane of every apartment-dwelling parent’s existence, to loosen up tight hamstrings. These are to replace the Pinky balls which had been in use at the gym but which get too loose after a while. I tried the superball on my hamstrings, and it was fine, but ultimately moved it to the soles of my feet, and OHMYGOD I could have stayed there all day. So, so good. I consider that my major accomplishment for the day, loosening up my very gnarled feet. At the end of a session at the gym you’re supposed to feel really sleek. Today I felt like a jar of this after my workout – and it was fine.

Nutella Love <3, by Natsumii on Flickr, licensed under Creative Commons

I came home and took my meds. All I wanted to do was eat, just like the past week or two, but I can’t eat for an hour after taking them, so I went to sleep instead. When I woke up, I was starved and raving. J and I went to lunch. I cannot eat enough carbs and sugar. And I feel lousy when I do, but not lousy enough to stop. I know this will pass, and I’ll once again have healthy cravings, but for now I’m just rolling with them. We did some errands after lunch. I still have enough steroids in me to make to do lists. But I was simply exhausted when we got back. I got back in bed and slept deeply until it was time to get the kids, then rolled over and kept sleeping while J went to pick them up.

I woke up to the news about San Bernardino, and almost kept on sleeping, pillows over my head. I don’t know what the world is coming to. And this is something we are saying to ourselves every day now.