A new review of Field Guide, Another Step on the MS Journey, and Fall Approaching with Poetry Discouragement
New Review of Field Guide to the End of the World
Thank to to Poets and Artists and Rita Maria Martinez for this new review of Field Guide to the End of the World. It cheered me up during a tough week.
Another Step on the MS Journey
I saw a much better doctor at the Evergreen MS Center yesterday who did a longer exam and answered many of my questions. She explained why my case was probably too complicated for her, boo, because I liked her, so she’s sending me along to the larger UW MS center’s director and maybe they will send me along to a bigger research center after that. She wants a larger research umbrella for me, she said. She thinks I may have MS plus something else causing some of the symptoms. We’ll get another step closer to a firm diagnosis after doing an evoked potentials test, which will be my next step along with an eye exam and meeting with a new gastroenterologist. She said that was probably the last step before an official MS diagnosis – no spinal tap, yay. She was very empathetic and asked lots of questions, explaining things along the way. (Like, my midsection has gone numb along with having the stomach trouble – which could indicate spinal issues even though I don’t have visible spinal lesions yet.) She also thinks my b12 problems – besides kind of masking the bigger issues for years – might be a symptom of another autoimmune issue that’s using up the b12 stores. Interesting! I keep reading books on this stuff but MS is complicated. She is putting me on steroids (hello, hunger, energy and insomnia) for a short term to see if they help. She’s worried that the 14 approved MS treatments are all going to be problematic for someone with liver tumors, a bleeding disorder and a primary immune deficiency, so a little worry about that, though I guess we’ll cross that bridge with the next set of doctors. She said that MS will eventually be one of my diagnoses, and she was sorry because it would be expensive to get long-term care. I laughed and that, and told her last year I’d been diagnosed with terminal cancer, and I thought that was probably much worse for getting long-term care insurance!
Fall Approaching, and Poetry Anxiety
Last night I had an anxiety dream about Trump taking away my health care – literally coming up to me in person and taking away my prescriptions – and another dream in which I was told I’d never be a famous poet like “blank.” (A specific poet I admire.) I know it was just anxiety dreams, but sometimes I do worry that I’ll never really achieve anything in the poetry world and that my kind of poetry will never get me fellowships, recognition, awards – the stuff that’s not supposed to matter, but still sort of does. And especially if I can’t travel or have to take time off for health stuff periodically, or I can’t make it to every AWP – it just feels tough. For a while this last couple of months I couldn’t write – which was really depressing – or even read. And I realize you can’t really take those things for granted, not with MS, or maybe anyone, ever. You feel like you have all the time in the world, and then you’re like…well, maybe it’s limited. Maybe my time to do the things I want is limited. I can see my life getting smaller – being in a wheelchair for the past two months again has reminded me how NOT handicapped friendly most of the world is. Even in liberal and wealthy Seattle, it’s like half the city hadn’t been built with ADA specifications in mind – and I have a six-foot-two 250 pound man to help me when I get stuck with my walker or wheelchair by a curb or stairs or a non-automatic door, most people don’t.
The weather has gotten mercifully cooler, and the air cleaner, finally devoid of smoke, and the weather report is calling for rain and highs in the sixties. I can feel my body sighing with relief. I managed to get out of the house today and for the first time in two months (!!) get my darn hair cut – it’s still hard for me not to get really dizzy and nauseous when I’m out, but it was worth it to feel like I was doing something normal and human again. I took some pictures of pink roses still in bloom late and these pirate-type boats at Carillon Point while I was out. And I start medication tomorrow that will hopefully help with the dizziness, numbness, stomach problems, and leg weakness – maybe even the minor motor skills that I really want to get back (hello, handwriting and eyeliner possibility!) I know the fall usually makes me feel more hopeful about writing – all the journals and publishers opening back up, all the readings and book launches. I’ve just really been struggling with doubt about my poetry path as well as this diagnosis, which is definitely a challenge even compared to all the other weird diagnoses I’ve had in my 44 years. I’m feeling a little down on my luck, a little discouraged not only with my body’s multiplying problems but my writing path. I am hoping things get a little easier – rewards, even small ones, might manifest, that my body responds well to treatment and lets me start doing “normal” things again – at least a little socializing. This is really the third month of enforced alone-time and rest, and I’ll admit to growing restless in my confinement. I hope soon I’ll have better news to report. Good luck to all of you in September!
