The foundation, the body.
As of this week I am cancer-free and imminently moving into a beautiful flat with a nicely sized studio (the first large dedicated space since the illness). I just finished my first roll of film in a newly-acquired Nikon F2. It is a good day: a dear friend just visited from Chicago - another called me from the UK on my birthday - and still others are collaborating on all manner of projects which I can barely contain my excitement about.
Energy is up. The reason is simple and surprising, while novel enough to merit a detailed explanation.
Medical talk follows - scroll down until you see ✧✧✧✧✧✧✧✧✧✧ to skip ~
It was discovered that I have the MTHFR gene variant, which means that for the entirety of my life my body has not processed folate - as well as a host of other chemical compounds - in the typical way. Unmitigated by diet or supplementation, this can cause a toxic build-up of homocysteine which can lead to - I am told - everything from cancer, to bipolar, to hallucinations. It sounds like something like a science fiction novel, but it’s real and part of my body.
The body is the instrument of the artist - it is the artist, and the instrument. Without it, there is no work.
The fix is so simple: a daily supplement of L-methylfolate. This has been the approach for the last month, and in the last month I have had two migraines total instead of the typical two to six per week. I wake up feeling rested, perhaps for the first time in years.
Further, my vitals have stabilized in the orthostatic tests run by my specialists — for the first time in a very long time, the numbers attached to my body reflect those of any normally healthy person. I am not greying out when I stand, and spontaneous walks with friends happen regularly now. And oddest of all - I am waking up in the very early morning and nodding off around 11pm, whereas my usual bent had been to stay up very late and sleep until the afternoon. This lends a surreal quality to an already surreal period.
These changes have the glow of a miracle to me — all of this, so strangely, seemingly for want of a readily available dietary supplement. I am told that this mutation was once adaptive - perhaps held by people with highly plant-based diets, which is so different from the standard American approach. I thought immediately of the food deserts in the American South where I grew up.
Something like 40% of Americans have this variant, which can act as a cardiovascular risk factor (if it expresses itself at all). In light of this new information, it seems hardly any coincidence to me that the rise of cardiac risk factors in 20th century America corresponded with the post-industrial diet. I feel that I stand at the base of a great tree, and as I look up into its branches I see this silent glimmer in so many of my ancestors. I am deeply grateful to my medical team at UCSF.
Socially, when one has ‘outed’ oneself as a spoonie on the internet, one’s health apparently becomes a matter of more public concern - and so I have become accustomed to people asking what may be considered otherwise probing questions. In answering questions about my health with a new friend, this peculiar development came up and they asked, “But isn’t that, like, a pretty well-known thing? Isn’t that widely available, or wouldn’t they have found out about it when you were a kid?”
In some parts of the USA, children do still live in what may be popularly described as ‘second or third-world conditions’ (click the link to see why this is problematic) with no access to healthcare — yet this is not a passing conversation, and people do not always respond well to it if this is a revelation for them. Talking about dark things very early can damage fledgling relationships. One can often merely shrug and sigh, rather than travel down the dark corridor which leads to the truth… until, of course, the light of friendship shows the way.
There are other layers of context here, particularly after recent national events — things around the cultural expectation that fem-coding people should offer up their suffering for scrutiny; things around any stalwart refusal or reluctance to do so. However, for me, this is a topic for another day.
I am bathing in gratitude and appreciation, fully wrapped in it like the very best of blankets.
It will be interesting to see how this path changes, as I am in such a highly transitional period - I am not sure what these messages will look like next year. Will they be all about the work? Will I still make these around-the-body updates? It is a mystery, and an adventure.
Of course, all of this informs the work. I had thought I was done with NEEDLES. I think, perhaps, I am not. There are other, newer projects in the works… I am only less inclined to speak about them publicly until they are finished.
While I am notoriously avoidant of things resembling self-promotion, I should say that there were some lovely small things which happened in the press -
The pictures from the SCR-110 effort have ended up in other publications, too… I am not sure it is useful to list them all.
What is most remarkable for me is how the experience of making these pictures has clarified my practice. This is precisely the kind of support I love to give — just at the intersection of the arts, journalism, awareness and tangible action — and so this has all been elucidating for future work, as well as deeply gratifying.
More to come.
In art and stubborn joy,