Recalibration

As above, so below (C&O Canal)

We’re about to finish the calendar. I tend to reject the imperative to take stock of myself at this time of year, since I prefer to do that in the autumn when the Jewish new year rolls around, with its generous ten days to reflect (between the start of the year and the confirmation that you get to see it through).

We aren’t up to very much over this holiday break. We were supposed to be traveling in Israel, a family trip that the pandemic has canceled twice now. Instead, we’re home and the sudden appearance of the omicron variant has us recalibrating again. At this point it seems clear we’ll all get covid. It would be nice to wait until the omega variant, which we can only hope is even weaker than omicron. I’ve decided to book a solo trip to Italy for February, to attend a wedding. I am hopeful it will be able to go on as planned.

I heard from a friend, D., whom I hadn’t seen in well over thirty years (except on social media). She was going to be in our area visiting with her family, so we made tentative plans to meet up. This weekend, the plans became less tentative. They were going to be hiking at a park very close to us, so it seemed like the perfect opportunity to a) meet up with D. (and her husband, whom I hadn’t met in person and who has been through some considerable medical ordeals of late) and b) interrupt the kids’ sedentary lifestyle and suggest to them that they don’t need to be Indoor Kids forever. It helped that the weather here reached over 60 degrees over the weekend.

D., her husband and son, and extended family were planning to hike on a trail I’d heard about but wasn’t quite sure I was up for. I figured I’d start the hike and see how it went and bail out early if necessary. I received a pair of fancy collapsible hiking poles for my birthday, and was keen to try them out. The poles and my hiking pants (and a pack with a few snacks and one bottle of water for the four of us) were the extent of our preparation for the hike. I do not own hiking shoes, so I wore running shoes (which have been proving a poor substitute for hikers for some time now).

Did I mention that I’d also taken a rapid covid test, since I had some cold symptoms the night before? The test was negative, and I didn’t actually feel sick, but my doubts lingered. It felt like I was doing not just one wrong thing, but a series of wrong things.

I didn’t want to let D’s husband down though. I knew he’d read some of my blog posts during his own ordeal (which also included steroids and gamma knife surgery) and that he very much wanted to meet me. I’ve been following his own story, and felt the same. I just wasn’t sure about the hike.

We met up, hugged (masked), and set out for the trail. I took out my hiking poles and set to figuring out how best to use them. It wasn’t intuitive. I probably should have watched a YouTube video. (How did we ever accomplish any new thing, before we could see it done perfectly on YouTube?) I decided to treat the poles as extra limbs and use them for support when I was climbing between rocks. I started to feel less awkward and like maybe I was getting the hang of it.

And then we got to a section of the trail where the poles would be useless. I folded them up. It was just about an hour of pure climbing, not many dirt paths. Some of the trail was near the edge of a cliff overlooking the Potomac River. I panicked a few times. I was still wearing my mask, but eventually gave it up. Did I forget to mention that my cataract has gotten worse, and I can’t see very well from that eye because of the blurring and the glare?

I remember a similar situation a number of years ago. It was November 2015, shortly after my second gamma knife surgery (which was the final Dramatic Event of my active phase of cancer treatment). We were visiting my family for Thanksgiving and took a day trip to Shenandoah National Park. We set out on a hike that didn’t seem challenging, but eventually involved scrambling on rocks to access the view, which really wasn’t to be missed. I remember feeling the same degree of panic then. I wasn’t prepared, I felt stuck at various points, and I have no idea how I got through it. There are photos that show me trying to smile, but I remember my cold sweat.

Today I was multiply challenged, not only by my mask and bad footwear and poor eyesight. D’s husband had declared that hiking this trail was a bucket list item for him. This sent me into a reflection about my own trajectory from illness. I knew exactly where he was along his trajectory: the place where you can’t quite believe what you lived through. It makes everything urgent and exciting! You are alive and there are things that can’t be put off any longer!

There is absolutely no problem with this approach. It got me through a grueling 25 mile bike ride a year after my brain tumor diagnosis, after all. I get it. I’ve absolutely been there. My problem today was facing someone who feels this way about life — emphatic about living it actively, not putting things off any longer — and realizing how far away I’ve gotten from that feeling myself. It’s not that I am no longer grateful — it’s that I got tired. Old. Out of shape.

I managed to lurch over the rocks and then climb a rock face that almost undid me, especially a point mid-climb where I needed to power through and suddenly felt only weak and incapable. J. helped me. Once we were up, I bailed out of the trail at the earliest opportunity, joined by Young A, who never, ever misses a chance to do less exercise. We sat on a bench for a while. I was dismayed to see that we’d only walked 1.5 miles total. It was almost all up and down.

Walking back to the parking lot after the hike, I was catching up with D. about what’s been happening in her life. She mentioned that when she was dealing with terrible pain from a herniated disc a number of years ago, she reminded herself that her troubles were not so big compared to mine. That made me feel awful, because at this remove from my own suffering (such as it was, which as I recall it now was definitely not on the order of herniated disc pain), I certainly wasn’t prepared to hear that anyone would qualify, or minimize, or discount, their own suffering because of a perception that mine was greater. Earlier, I had asked her husband to guess how many nights I’d spent in the hospital during my cancer. (He’d had to spend a lot of time in the hospital.) He guessed 75. I felt terrible telling him the truth: only two. Once when my lung collapsed, another right after they found my brain tumors. I had outpatient cancer. I got off easy. What the hell was I complaining about back then?! I guess I should go back and reread my posts here, because I don’t feel full of empathy for the person I was back then. In fact, I barely remember her.

It took a little while before I stopped being teary and feeling defeated after I bailed on the hike. I sat on a bench with Young A and looked at the water on the canal, calm and untroubled glass. A few raindrops fell. People walked by with adorable dogs. We chatted. We wondered how long the others would be. Young A went looking for them, stayed away a while, then returned. It got colder. I tried to feel happy we’d come out for a hike, but my body was bruised and broken, and my ego was definitely shattered.

When we got home from the hike, and I finally took a restorative shower, this song popped into my head.

Restless eyes close, maybe it'll go away
Please rest tomorrow, bring a satisfying day
The restless urge of love that's worth the burning for
Surely it's that one comfort love to give you more

Any thought could be the beginning of the brand new tangled web you're spinning
Anyone could be a brand new love
Any tie that holds can be broken, tear your bitter world to the open
Anyone could be a brand new love

You won't be the first, your twisted change is normal gossip dirt
Whispered to the nodding head
Thrilled you fell apart, instead of them
But they will
Cause any hope for love can be killed
If you need a different face, it's definite time to destroy this place

Any thought could be the beginning of the brand new tangled web you're spinning
Anyone could be a brand new love
Follow what you feel, you alone decide what's real
Anyone could be a brand new love

The song embodies the duality of Sebadoh’s work, which attracted me to the band initially: sensitive lyrics accompanied by music by turns soothing and angry and angular. The lyrics to this song have previously suggested to me a cop-out, a guy making excuses, someone trying hard to cover their tracks.

But not today. Perhaps it’s the influence of the memoir I’ve been reading (Ladyparts by Deborah Copaken), which narrates a life in surgeries and heartbreak and lost jobs — and the long, torturous process of coming into one’s own, alongside the near-impossibility of being a woman who can find meaningful and fairly compensated work in the U.S., and most of all, affordable healthcare. Perhaps it’s that I spent the entire hike indulging in the act of self-loathing, an act I’ve become exceedingly good at.

I need a brand new love. And that new love needs to be none other than myself. I have wasted years, years I am lucky to have had, torturing myself in secret and in public for the many things I am not, the things I have not done, the things I cannot or will never do. I am overdue for a breakup with that feeling, and now I have an anthem for it.

Wish me luck. Happy new year.

Fifty

A letter I wrote last night to a most exceptional nurse practitioner and friend, Kathleen Madden of NYU. She is part of the amazing team that helped make it possible for me to reach the age I have today.

Dear Kathy,

I hope 2021 has gone well for you. Although my year began with a Crohn’s diagnosis and is ending with the certainty that I’ll need to undergo cataract surgery in the new year, I really can’t complain. I can’t complain because I get to still be here. Tomorrow, December 13, I turn fifty years old. (Sometimes it is good to have a late birthday, and watch your peers get old before you do!)


It wasn’t a given that I’d get to see fifty when I was diagnosed with melanoma at age 41. And it was through unbelievable good luck, which included being referred to NYU to the care of incredible people like you, that I am still here.


While I seem to have reached the more permanent phase of survivorship these days, I will never stop being nostalgic for the days when I got to come in and see you and discuss life, the universe, and everything (and most especially Generation X). Those visits, full of truth and hugs and plenty of laughter, were the brightest spots of a terrifying and unsettling time of my life. Thank you for meeting me there and reassuring me things would be okay. They have been.


From the bottom of my heart, thank you. Happy holidays and all good wishes for you and yours for 2022.


Love, Deborah