Happy Halloween (and a Spooky Poem,) Living with MS and Selma Blair’s Documentary, and Turning Dark

Pumpkin Display at JB’s Pumpkin Patch

Happy Halloween!

Well, kids, the end of October is upon us, and so is Halloween, Samhain, the Day of the Dead – basically a time to recognize the beginnings of the darkest time of year, a time to take stock, to pay respects to ancestors and those we’ve lost. A good time for ghost stories and watching horror movies. A great time, also, to celebrate the harvest.
After a week of dark, cold, and “bomb cyclone” storms here in the Pacific Northwest, and me recovering from a (non-covid) nasty cold, we had a welcome sunny day today and went around to farmer’s markets in our neighborhood (apples, fennel, peppers, and squash are perfect right now) and even to a pumpkin patch. It was nice to walk around outside without getting soaking wet (we were not having drizzle, more like downpours all week) even if we had to put on a sweater AND a jacket.

Glenn and Jeannine with sun flare and harvest decor in Woodinville

I think fall food is my favorite, and it’s fun to have the colors and smells of the season in the house. To celebrate the harvest here at our house, we are making delicata squash risotto with fennel tonight, and plan to make some pumpkin goat cheese tamales tomorrow (it’s possible we bought too many pumpkins…) We’re also going to set up an outside bench with a table for candy (and rubber ducks for the allergic) for the kids – still outdoors, but hopefully safe for everyone involved. Pandemic Halloweens for two years in a row must be hard for children.

Below you can see me in cheetah ears and cat’s eye sunglasses in Kirkland, a spooky waning Harvest moon, and a Towhee dressed perfectly for Halloween in black and orange (with red eyessss…so spooky!)

 

Me in sunglasses, fall colors in my yard

Introducing Selma Blair and Talking About Living with MS

This week I watched the moving documentary, “Introducing Selma Blair,” on Discovery+.

I wanted to post something after watching this documentary, about her struggles with MS. It’s difficult in parts to watch and her sense of humor even in difficult circumstances is obvious. I want to thank Selma Blair for sharing her own journey. Everyone’s MS looks different. I definitely understood some of her struggles and decisions. But we do not all have the opportunity to try things like stem cell transplant, which is very expensive and risky. (The treatment center which she had her treatment at shut down right after her treatment. It also had about a 7% fatality rate.) It’s not a recommendation that most neurologists would give most people.
The drugs (DMDs) for MS don’t work all that well and have a lot of terrible side effects, with at best fifty percent effectiveness, and steroids – another treatment – have side effects like weight gain and mood alternations. So I understand why she tried the stem cell treatment. It’s why I support charities like Race for an Accelerated Cure for MS.

Glenn and I with pumpkin display at JB’s pumpkin patch, in sunglasses

In case you’re wondering, one of the reasons so many pics feature me in sunglasses is because they help limit stressful brain stimulus. Yes, I walk with a cane, and sometimes, for distances, a wheelchair. I try to stay as active as possible, despite vertigo, some memory issues and foot drop.

Since my diagnosis almost four years ago, I’ve had years of physical therapy, speech therapy, and other things (vitamins, an altered diet, etc) with various results, but I think I’m doing better than I was before diagnosis. I know what my limits are now. Stress, illness, and sun/heat exposure all make symptoms worse. If I start slurring words, or tripping, I know to go rest. If I have to push myself one day, it requires multiple rest days. I have MRIs twice a year of my brain and spinal cord. I would say I’ve had to make adjustments in my life; I can’t be as spontaneous as I used to be, and I have to have “outs” in case a flare comes up.
I know I’m not alone; even some of my writing heroes, like Joan Didion and Rita Dove, revealed they were diagnosed with MS years ago. I have younger friends facing their MS with grace and hope for better treatments. Anyway, that my short update on my own MS and how it impacts my life. I am looking for work again in the literary/publishing world, after not being sure how MS would affect my ability to work. My husband and cats provide a lot of support. I am lucky to have my birds and gardens and writing community, all of which, even during the pandemic, have helped keep me tethered to life. MS is progressive and has no cure, for now; but I am hopeful for the future that we will figure out how to better treat it. To me, it’s not even the scariest health problem I have – my mast cell disorder (which causes spontaneous anaphylaxis) and rare bleeding disorder are more likely to kill me than MS is. How’s that for a spooky story?

Finally, a Spooky Poem, as Promised!

This poem appeared a few years ago in Gingerbread Lit, along with some beautiful art work, and will be included in my upcoming book from Alternating Current Press, Fireproof. Click the image to enlarge.

“The Year I Became a Witch,” in Gingerbread Lit

Glenn and I in the sun at a pumpkin patch

Turning Dark

Though all the pictures we took today were in the bright sunshine, the truth is our days of sunshine are going to be limited – especially after this month, especially after the time change, which robs us of desperately needed afternoon sunlight time.

I try to embrace the darkness rather than fight it; see it as an opportunity to change some habits, get to sleep earlier, rest more, take my vitamins, cultivate indoor activities and of course, as a writer, read and write more. For some delicious fall reading, I recommend two books I’m in the middle of: Louise Gluck’s perfectly seasonal and melancholy Winter Recipes from the Collective, which I think is her best book in years, and the art-world mystery which I picked up because it’s loosely based on Daphne du Maurier’s Rebecca, Fake Like Me by Barbara Bourland. If you haven’t read Rebecca, definitely read that first. A very haunting classic.

What do you do to get through the dark times? (Yes, I realize we are literally going through a dark time because the economy, pandemic, etc. as well as literally getting into darker, colder months.) Do you have any tips for not totally ruining your internal clock with the time change? I am wishing you all kindness, health, and happiness as we turn towards a new season and the end of a difficult year.

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Jeannine Hall Gailey

Jeannine Hall Gailey
Jeannine Hall Gailey is a writer with MS who served as the second Poet Laureate of Redmond, Washington and is the author of Becoming the Villainess, She Returns to the Floating World, Unexplained Fevers, The Robot Scientist’s Daughter, winner of the Moon City Press Book Prize, Field Guide to the End of the World, and the upcoming Flare, Corona from BOA Editions. Her work has been featured on NPR’s The Writer’s Almanac, Verse Daily and The Year’s Best Fantasy and Horror. Her poems have appeared in The American Poetry Review, Poetry, and Ploughshares.

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