My partner Thom was 29 when we took him from the optometrist to NY Eye and Ear Hospital with suspected optic neuritis, which turned out to be a 6cm Oligodendroglioma brain tumor in the right frontal lobe. The diagnosis of this rare and intractable thing and our first anxious year of survivor-hood have just come to an end.
We thank you for your support, we are indebted to the love of our families and closest allies in this life.
One year on we have begun to reimagine how to live in this strange context. Be realistic and don’t get too high with the highs or too low with the lows. Take plenty of pictures for your children. Self-care. Be in the moment. Inhabit the grey area. We are all part of an enormous web of living and non-living entities. We humbly wish we had the positivity and strength we see in heroes with even harder diagnoses.
Thom’s eyes are such a bright blue they are almost turquoise. He tells me every new song I play him or meal I make him is his new favorite. He makes the most intelligent, wild, beautiful music with his band Uncivilized. He is complex, gentle, obsessive, thoughtful, affectionate. His seriousness breaks like a storm into bouts of unexplained silliness. He has the most, most beautiful smile.
Those of you who know me know that my idea of exercise is yoga that borders meditation and walking to and from delicious meals, views and coffees, so my participation in a sporting event should express just how important it is to me that Thom and everyone with brain tumors get the care and support they need, and that treatment options evolve rapidly to save lives like Thom’s. Please consider donating if you can, or participating.