February Favorites

Update & The Stories Keeping Me Going

Hello. I feel like I’m shouting up from the bottom of the well. But there’s a circlet of blue sky way above me. There is sunshine on snow. There are people who have given me so much love. I hope I can grow it bigger and return it someday along with my own heart.

I am continuing to focus all my efforts on healthcare. One step forward, ten steps back. One moment of clarity followed by ten hours of unremitting physical pain and breakdown. It’s keeping my narrative lymph moving, my beliefs fluid. My body is asking me to remain open to surprises constantly. Good ones, bad ones. Neutral ones. Just keep moving, keep dancing.

I am so grateful I’m able to receive IV nutritional support right now. It’s the only thing keeping me from sliding into complete emergency. My nurse Kristy Lynn is deeply kind and helpful and it’s one of the few times I receive a treatment with immediate noticeable benefits. That’s wild! I’ve been given so many experimental drugs over the years that not only did not help me but made me much sicker. It’s a small, quiet, and beautiful thing to receive a medical intervention that just immediately…helps. My eyesight improves slightly the day after. But I want to be better now. Strong now. Sadly it is not so. This is a long journey with biopsies and uncertainties ahead. If I go an extra day without extra vitamin or nutritional support, I begin to backslide in a way that scares me. It scares me being so dependent on other people, on medicine. I feel like a weird orchid. If you take me away from a delicate system of support I droop and whither.

But it’s also a blessing to see how much other people are part of me. They slip into my veins along with the IV drip. I am flush with love. Remade with the generosity of others.