new ms-related pieces: diagnosis story & chronic illness lit

Screenshot 2019-11-05 10.03.42I’ve written two new pieces about multiple sclerosis and chronic illness for your reading pleasure:

HealthCentral: Diagnosis story

How and why did it take two years from the initial onset of symptoms for the medical community to diagnose me with multiple sclerosis? This essay details my journey to learn something that would change the course of my life.

istock-846475966Chronic illness lit: Finding solace between two covers 

Over on the National Multiple Sclerosis Society’s MS Connection blog, I paid homage to writers who’ve shared their stories of strength and struggle while living with chronic illnesses. When you’re feeling down, reading about the experiences of others can provide an existential balm.

An excerpt:

Sometimes I just need to relate.

I need to see my experiences, my struggles confirmed instead of negated and misunderstood. I need to remind myself that I am not alone in my fatigue, in bouts of cognitive fuzziness, in my hair-pulling frustration.

I have been reading books written by those who are living with multiple sclerosis and other chronic illnesses. I’ve been quite voracious about it, collecting these tales as a way to see myself reflected, helping me feel seen and heard.

Works I noted as being inspirational include: the collection of stories Bodies of Truth: Personal Narratives on Illness, Disability, and Medicine; Sonya Huber’s Pain Woman Takes Your Keys, and Other Essays from a Nervous System, and Andrea J. Buchanan’s The Beginning of Everything: The Year I Lost My Mind and Found Myself. (My praise for Nicola Griffith’s So Lucky — a novel about a character with MS who solves a murder mystery — got edited out of the final piece.)

Read the rest of the essay here.

Image credits: HealthCentral and MS Connection.

‘uncomfortably numb: a memoir’ available for pre-order

screenshot-2019-09-16-14.55.57.png

The memoir in which I chronicle the diagnosis of multiple sclerosis, the death of my mother from a fast-moving cancer, and the changes that accompany those two things is now available for pre-order.

 

publishing news: memoir coming in spring 2020

August 2019 book promo

The memoir on which I’ve been working for several years, Uncomfortably Numb, is being published by Wyatt-MacKenzie Publishing in the spring of 2020.

While chronicling the onset of symptoms that ultimately led to a diagnosis of multiple sclerosis, Uncomfortably Numb tells the story of not only finding an uneasy peace with the permanent uncertainty of living with a chronic illness, but also of coping with the premature death of one’s mother and the ensuing collateral emotional damage.

Here’s the Publishers Marketplace announcement of the deal:

August 2019 Publish announcement

Image credits: Wyatt-MacKenzie Publishing and Publishers Marketplace.

 

of black holes & brain damage

black holeThe National Multiple Sclerosis Society has published my latest piece, “Black Holes” on its MS Connection blog.

The essay was inspired by the historic image taken of a black hole in April. Here’s an excerpt:

It looked like a glow-in-the-dark doughnut.

When the first image of a black hole 55 light-years away from Earth was made public by astronomers this spring, it was heralded across the globe. Astronomers, the New York Times reported, had “captured an image of the unobservable: a black hole, a cosmic abyss so deep and dense that not even light can escape it.” The writer described the image as “a smoke ring framing a one-way portal to eternity.”

The very idea of “a one-way portal to eternity” is terrifying in an end-of-the-world, Game of Thrones kind of way.

The very idea of a black hole becomes intimately and individually terrifying when you learn that you are carrying one around inside your brain. This is a real possibility for those with MS.

Read the full piece here.

Image credit: MS Connection.

it’s not a mr. smith goes to washington world: a nation’s core values under attack, from within

Claude Rains and James Stewart in Mr. Smith Goes to Washington (1939) .jpgI’ve been feeling frustrated and routinely aghast at the antics of the current leader of the United States, and his proxies who control the U.S. Senate. It was the president’s recent, unrelenting attacks on the deceased war hero, U.S. Senator John McCain, that prompted me to pull out the laptop and write.

I used to be an optimist, a Frank-Capra-Mr.-Smith-Goes-to-Washington kind of optimist. I believed, whole cloth, all those values of freedom, democracy, and statesmanship would endure, no matter who sat in the Oval Office.

I was wrong.

Here’s an excerpt of the piece I published on Medium:

Right now, I am grieving for the United States.

For thoughtful statesmanship and diplomacy, which are no longer important to our commander-in-chief.

For common decency in the public square, which is largely absent and is rapidly disappearing altogether, everywhere.

For the common values of kindness that parents teach their children, as our nation’s leaders have been role-modeling cruelty and avarice.

For the importance of acting in an ethical manner, even when it goes against one’s personal interests.

For the respect our leaders used to show for the virtues of freedom and democracy, especially as our president embraces dictators and tyrants, and considers laws beneath him.

Read the full post here.

Image credit: Wikipedia, promotional still from the 1939 film Mr. Smith Goes to Washington , published in National Board of Review Magazine. (Columbia Pictures – National Board of Review Magazine for November 1939, Volume XIV, Number 8, page 14, Dominio público.)

 

 

an issue of chronic illness & transparency

A new post I’ve written for the National Multiple Sclerosis Society’s blog, MS Connection, explores the issue of how open someone should be when they have an invisible illness.

Do you tell everybody about your illness, immediately? Do you incrementally parcel out the info about what’s happening to you on an as-needed basis? Or do you only tell people when your symptoms force you to become public?

These are questions with which I still wrestle.

An excerpt:

Do I walk over and explain to the dude in the garage—the one who’s been giving me the stink eye ever since I pulled into a disabled parking spot—that, while I appear to be healthy, I actually have MS?
 
Do I tell my students what’s going on when I’m pressing my icy drink against my neck to cool me off while I’m teaching inside an overheated classroom, fretting about whether my MS heat sensitivity will flare up?

I face these situations quite frequently, wondering whether I should explain my MS to people so they will understand my actions and reactions, or if I should just keep quiet.
 
Four years into my MS odyssey, I haven’t yet found the sweet spot.

Read the rest of the post here.

Image credit from MS Connection.

new post: when ms messes with your sense of taste

The National Multiple Sclerosis Society published my recent post, “A Loss of Taste,” about my vanishing ability to taste foods, as comfort food that I once enjoyed now give me nothing but disappointment.

Here’s an excerpt:

Somewhere along the way, my ability to savor certain foods has waned. Actually, it’s done more than waned. In some cases, it has warped into a bizarro situation where items I’ve long loved now suddenly taste of bitter disappointment.
 
What food now tastes terrible to me? My beloved morning coffee (with the exception of peppermint-flavored java), several red wines I used to adore, some marinara sauces, toasted everything bagels, and even the heartiest of sandwiches, unless they’re slathered with this spicy chipotle mayo I found.
 
Over the past two years, my ability to taste these favorites has gradually diminished. More recently, it significantly ebbed to the point where several food and drink items no longer taste familiar. The caramel-flavored coffee I bought the other week? It was outright disgusting in my mouth.
 
Is MS the culprit? My taste thief?

Read the rest of the piece here.

Image credit: National Multiple Sclerosis Society.