Yeah, That Too.

 My good friend with whom I am sharing both a high-flung discussion about and real-time experiences with being disabled, posed an interesting question in her most recent letter. 

I wonder why we've both been so very resistant to being labeled disabled. I guess it just doesn't fit our self-definitions.

I responded with two points of view. She's right: I have not thought of myself as disabled despite my family physician recently reminding me that I was disabled the moment I was diagnosed.

My second point of view, personal to me, is that while my overall physical well-being has been deteriorating for years, the rate of deterioration has been so infinitesimally slow that I lose conscious track of it.

Except when it hits me in the face, as happened just this week. 

I keep two sets of notebooks about my health. The first set consists of spiral-bound notebooks in which I record doctor visits, exams, results, questions to ask at the appointments. I started this set in 2014. These are the 1 Subject Notebooks that are now flooding our local stores as families prepare for school to open shortly:

The second set is random in size, color, and make; they are my myeloma journals. They date back to 2012, when I resumed treatment after gaining health insurance through my work and waiting out the one year of pre-existing condition limitation on coverage. Walking into our local hospital, which used to house the oncology clinic, I ran into an acquaintance, who was also a nurse. When I told her where I was headed and why, she said, "Keep a journal of how you are feeling, how your body reacts to different treatment. You'll find it useful."

My myeloma journals

It is this set that trips me up in the "oh yeah" moment. The same day this week that my friend's letter arrived with her pertinent question, I had been scanning these journals backwards chronologically, looking for a particular medical event. I did not find what I was looking for, but I found 2021 notes that sounded remarkably like what I am feeling now. Only better because I was in better shape then. In assembling the notebooks for this photo, I found similar entries years before those entries. In short, I have over a decade of entries showing a slow, imperceptible-to-me decline. 

As I posted back in June, 2022, it's the effing truck.

I am currently reading The Country of the Blind/A Memoir at the End of Sight by Andrew Leland, who writes about his increasing blindness from an incurable, chronic, progressive eye disease (retinitis pigmentosa, or RP). Leland has the same experience with his gradually diminishing sight that I feel with the myeloma; at times the changes are so small and slow that it takes him time to realize that he has lost more ground. "Once I adapt to a change, and it's felt stable for a while, I nurture the illusion that, actually, my RP isn't as bad as it seems." He then goes along until his vision "erodes a bit more, and the drama of a fresh diagnosis is reactivated."

Yeah, that too.

So now I circle back not only to the burnt barn haiku, taking comfort in my seeing the moon, but also in the blunt reality of Atul Gawande reminding those of us with incurable cancers that the night brigade is always out there bringing down the perimeter defenses.

Yeah, that too.

Last evening, I ran into a series of more-that-usual stressors and finally flung myself down on the couch to watch the Shabbat service from Temple Sholom in Cincinnati, my synagogue of choice. I really needed that quiet sanctuary. (I was a bit late, and stressed about that, too.) I opened the site, I click on the service, and...

Crickets. They were having tech issues and could not get audio working for the live stream. 

But Shabbat came all the same. Later that night, closing the house up for the evening, I went out on the back deck. In the southern sky, the just past half moon was glowing. I called for  Warren to join me and we both looked for a few moments, sealing the moment with a kiss. Life goes on.

Yeah, that too. And that is the best of all.