Writer with ALS focuses on ‘this moment now’
Some columns just write themselves, but this one I’ll leave to Yvette Marie Wilson.
For the past few years, she has done a lot of writing, her words like beacons lighting the way for others who follow her on a journey that might otherwise be less joyful if not for the positive narrative Wilson prefers.
Which is not to say that where Wilson, 48, is going is not heartbreaking. Being diagnosed with ALS in 2015 set her on a path into the unknown as the shadows of an incurable disease grow longer, darker, inevitable.
That, though, is not what Wilson chooses to
write about or dwell upon.
“I make no apologies for my ambitions, for my confident belief in myself or for wanting something more out of life,” she wrote last October. “I need no excuse for wanting to make the most of my brief time in this life. Having been diagnosed with ALS, I am determined to make every day special and meaningful.”
Wilson, a Navy veteran, was an active woman most of her life. It’s how she met Greg, her husband of six years.
“We were running 5K races and walks, doing Dirty Dashes,” she said. “We were hiking, rollerskating, bike riding. We were doing it all back then.”
Three years ago, though, she noticed a weakness in her legs, like she was walking through mud, like her legs were too heavy to lift. It took months and grueling rounds of testing before she was diagnosed with amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig’s disease, after the famed New York Yankee who died of it.
“You could get 100 people with ALS together and not more than one of us would have been attacked in the same way,” she said. “There isn’t a specific scientific test that says, aha, you have ALS. The diagnosis is by process of elimination.”
It’s an unforgiving disease, slowly attacking its victims by destroying the nerve cells in the brain and spinal cord that control voluntary muscle movement until the muscles no longer move or support the body, no longer allow for the eating, the speaking, the breathing. The average life expectancy after ALS appears is two to five years, although there are exceptions.
Perhaps Wilson will be one of those exceptions. But that’s something to think about later. Wilson prefers to live in the now.
“Today, I don’t look too far into the future,” she wrote in January. “I’ve decided to savor today, and the memories that I’ve made with family and friends. Tomorrow is another day, full of possibilities and new adventures. I’m determined to treasure what I am able to do and accept help from those around me — not the easiest thing to do, but I’m learning. I may have to adjust the manner in which I do things, but this makes me a stronger person — because I am still here.”
Wilson said she has always liked to write, since a middle school teacher taught her about poetry. She took up writing essays, which can be found on her Facebook page, as a way to help others face ALS. Today, her writings are shared around the globe through ALS groups, clinics, doctors and others with ALS.
“I didn’t realize my writing was going to take off as fast as it did,” Wilson said, her voice raspy and thin, the latest toll the disease has taken. “They say it helps to fight back, to not look so much at the end result but what they have to appreciate now.”
Appreciating the now is her main message.
“Wherever you are, be there. Be there as fully as you can,” she wrote in November. “Don’t live in the past — you’ve already been there. And don’t live in the future, either. Tomorrow will be here soon enough. Live in this moment now. It is sacred and unrepeatable. This moment alone holds valuable gifts that should not be missed.”
Besides writing, Wilson speaks out about ALS through her community activities. Since 2016, she has led Team Yvette — also known as the Holy Walkamolies, whose motto is “Why run when you can guac?” — in the annual ALS Association’s Walk to Defeat ALS. With 178 members, her team is among the largest.
In July, she flies to Cuyahoga Falls, Ohio, to compete as Miss Wheelchair USA — another platform, she said, to talk about ALS.
“There are too many people with ALS who don’t have a voice any longer,” she said. “I hope I can speak for them, even if it is taking an alternative means of expression.”
Already, she is preparing for those alternative means. Someday, perhaps soon, she will lose her voice entirely. Then she will rely on her Tobii Dynavox, a remarkable computer that speaks for her, using her own voice and directed by the movement of her eyes — one of the last parts of the body to succumb to ALS.
Her eyes and her computer are also how she writes. She can no longer press a key or raise a spoon to her mouth. She uses a feeding tube now since swallowing has become difficult. Her husband — whom she calls her rock — retired from his job as an airplane mechanic to take care of her full time.
Wilson admits she is not always as hopeful as her writing suggests. Sometimes something simple like the inability to brush her hair or her teeth reminds her of where she is headed on her journey. But she keeps on.
“There’s no reason to sit there and cry over something I don’t have,” she said. “I’m fortunate for what I have now and what remains of my beautiful life ahead. Nobody knows how long we have. I am no different than that.”
Maybe not different, but so happily, joyfully herself.
“At the end of my life, what will matter to me? Not that I ever had the ability to foresee my future (I have little interest in that), but that I had a hand in shaping it,” she wrote in November. “That is the magic inside me. I can largely shape who I will become, and when I do, I am shaping my future.”
UpFront is a front-page news and opinion column. Comment directly to Joline at 823-3603, jkrueger@abqjournal.com or follow her on Twitter @jolinegkg.