A decade later, I reflect on my preliminary diagnosis of multiple sclerosis
“Hope is a reconnaissance unit always scouting new ways in.”
–Tamara Kaye Sellman, “The Words But For The Words,”
Intention Tremor: A Hybrid Collection (MoonPath Press: January 2021)
The quote succinctly captures who I am and where my head is at these days. But it wasn’t always this way.
It will take more than an infographic to document what it means to look back on the decade that followed my MS diagnosis–the goods, the bads, the uglies–but here some highlights:
Left
The publication of my first book, INTENTION TREMOR: A Hybrid Collection in January 2021 and spent the next eight months promoting it through my digital tour (because no bookstores were open live or offering readings)
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Left: Reinvention of my writing life includes an overhaul of my website and new novel-length fiction pursuits that include characters with multiple sclerosis (Eminent Domain, The Flare)
Center: A decade of MRIs and, so far, NNDA (no new disease activity)
Right: Surviving COVID-19 after avoiding it for 3 years, thanks to paxlovid and molnupiravir… and now that I have your attention, please get vaccinated and wear a mask, THE PANDEMIC IS NOT OVER YET and my MS and chronic peers still need your vigilance so they can enjoy getting back to normal. It will take all of us…
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Left: Columnist for BioNews Services, MS in Moderation
Center: Sometimes the work of living with chronic illness is an uphill battle. Check these out to learn more:
- Sick Days Before Diagnosis: An MS Retrospective
- Disclosing MS On the Job: Why I Did, and Why I Didn’t
- The Emotional Roller Coaster of an MS Diagnosis: Part 1
- The Emotional Roller Coaster of an MS Diagnosis, Pt 2
- On the Move with MS: Let the Confusion Begin!
- Because Avoiding Stress is Impossible…
- When the Massage Therapist Is Out and You Need Relief Now
- My MS: Adventures in Grocery Shopping
- How MS Made Me Slow Down for the Holidays…Literally
- Does Having MS Mean You Identify As Disabled?
- When Humidity Triggers MS Symptoms
- Has Anyone Seen My Attention Span?
- Shout, Shout, Let It All Out: Moment of Frustration Day Is Here!
Right: Columnist for Health Union, MultipleSclerosis.net
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Left: Fatigue remains my worst symptom, though I still experience aphasia, muscle spasticity (especially “the hug“), and sensory overload
Center: 100% of my proceeds from INTENTION TREMOR still benefit the Accelerated Cure Project, and I’m part of their research study looking at people with MS during the pandemic
Right: Six years of Tecfidera ended with a “medication vacation” in 2019 that I never returned to because of the pandemic
To all my chronic peers who have the audacity
to rise every day to live their best lives:
this world doesn’t deserve your
infinite light, enduring humor, and rooted strength.
Not pictured but not forgotten:
- Dr. Mariko Kita’s excellent care at the Neurology Institute at Virginia Mason Medical Center
- Dr. Robert Bethel’s amazing care, support and action to help me understand why I suddenly had problems reading and speaking
- My family and friends for remembering that I am not just my disease
All of my MS activist friends out there doing the good work of raising awareness (a partial list: Devin Garlit, Laura Kolaczkowski, Kathy Young, Lisa Emrich, Dan and Jennifer Digmann, Cathy Chester, Kim Dolce, Nicole Lemelle, Mitch Sturgeon, Dave Bexfield, Christie Germans, Stephanie Buxhoeveden, Emily Martin, Stephen Woodward, Jeannine Hall Gailey, Jen Culkin, Deanna Kirkpatrick, Stuart Schlossman…)- My gardens, my writing peers, my neighbors, my chronic illness buddies, and Mother Nature for being there and believing in me