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This past Sunday dawned crisp and cool on the eastern shore of Maryland, with a hint of light rain falling from a few clouds dappled against an otherwise vivid blue sky. I dressed to be outdoors, making sure my orange <a href="https://iamals.org/action/request-a-panel/">Tim Lowrey Panel</a> T-shirt was visible under my jacket, and set out for the morning.
As I pulled into a parking lot just outside downtown Centreville, a family walking by pointed at my license plate, which reads END <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, and cheered. I smiled back, excited, and parked my car, joining the dozens of other people walking and wheeling toward a field at the Route 18 Park.
We were all gathered for the <a href="https://www.als.org/dc-md-va/events/walk-defeat-als-chesapeake-bay">ALS Association’s Walk to Defeat ALS Chesapeake Bay</a>, an event to build awareness and raise funds. It brought several hundred community members together to reiterate our shared commitment to finding <a href="https://alsnewstoday.com/experimental-treatments-for-als/">ALS treatments</a> and cures. Though the cause is serious, the atmosphere on Sunday was celebratory; we were all together and united in taking action toward our shared goal of ending ALS.
And community is what this walk was all about. As I approached the large, grassy field where the <a href="https://www.als.org/dc-md-va">ALS Association</a> had assembled tents and a stage, I immediately saw friends I knew, teams of supporters in colorful T-shirts, and walk participants in power wheelchairs and on foot. I saw teams with dogs, with young babies in strollers, and with kids on their shoulders. I was instantly happy that I’d joined; the feelings of love and hope were palpable.
[recommended-reading id=84422]
I was walking to support my friend Tim’s team. He was walking in memory of his wife, Mary Ann, who died from ALS on New Year’s Day in 2019. Upon arriving, I met one of her cousins along with a dearly loved caregiver, who were there supporting and remembering Mary Ann as well.
Because I wanted to share Sunday’s experience in this week’s column, I started exploring the grounds after I greeted Tim and his team, saying hello to other participants. That&#8217;s when I was reminded of the true power of this community. As I introduced myself and asked about those participants&#8217; stories, I got (and gave) hugs to total strangers and had the chance to hear about their journeys and share mine. I met people <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, family caregivers, their lifelong friends, and others who are united in their devotion to keep our loved ones alive.
<h3>Why I remain active in the community</h3>
One might think that after losing <a href="https://alsnewstoday.com/columns/how-als-muscle-weakness-made-my-husband-stronger/">my late husband, Jeff</a>, to ALS in 2020 that I’d want nothing more to do with the disease. Many surviving loved ones don&#8217;t, and that&#8217;s a choice I understand and respect.
In my case, however, healing is the reason I and so many thousands of others who&#8217;ve lost our loved ones stay in the fight. It gives me a sense of purpose and meaning to stay active in the <a href="https://alsnewstoday.com/forums">ALS community</a>, helping to advocate for awareness, treatments, and cures as well as to support others with ALS and their families. There&#8217;s nothing so meaningful to me as spending time with those who understand the ALS journey.
<a href="https://www.als.org/blog/is-als-really-that-rare#:~:text=With%20a%20prevalence%20rate%20(number,identified%20as%20a%20rare%20disease.">ALS is considered a rare disease</a>, but in my opinion, it’s really not. Ask most people, I find, and they&#8217;ll know someone who&#8217;s living with or has died of ALS. Still, it’s not often that groups of us who&#8217;ve been affected by ALS have the opportunity to be together. When we are, I&#8217;ve found the atmosphere is comforting and kind, full of recognition and understanding. I think that’s one reason that Sunday felt so special.
The trait we all had in common that day, and every day, is shared hope. The ALS community is full of individuals from all backgrounds and walks of life, and what unites us is our fervent belief — and willingness to support one another — in ending a disease that takes so much from so many.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

How hope is everywhere when our community gathers

When I took my son to the doctor for his sports physical, the nurse went through a checklist of health history questions. The exchange took an unexpected turn when she asked about my husband’s health.
“Is Dad healthy?”
“No. He has <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.”
The nurse glanced at her computer screen. “I saw that in the file. Other than that?”
Caught off guard by her question, I held back a laugh. “Well, it’s such a debilitating disease. He’s very unhealthy.”
The nurse continued, “Has Dad had any health changes since last year?”
“Yes. ALS is progressive.”
[recommended-reading id=77415]
As I later recounted the conversation to my husband, Todd, we laughed at the absurdity of her questions.
“Why do I find it funny?” I asked.
He pointed out that the phrase “other than that” has a minimizing effect. “If I said, ‘I totaled my car,’ no one would ask, &#8216;other than that, how is it?&#8217;”
ALS is so bad that nearly every other ailment pales in comparison, even to the extent that Todd’s primary care physicians haven’t screened for them.
In retrospect, the nurse was likely trying to assess unrelated genetic predispositions to things such as <a href="https://www.mayoclinic.org/diseases-conditions/type-2-diabetes/symptoms-causes/syc-20351193">type 2 diabetes</a> or heart disease, and so her questions make sense, but they still made me laugh.
There are as many theories about what makes something funny as there are comedians who tell jokes and audience members who hear them. But most people might agree that there&#8217;s humor in the unexpected or incongruous, and otherwise normal or perhaps slightly odd behavior becomes funny when it occurs in a serious setting.
My family has been working our way through &#8220;<a href="https://www.imdb.com/title/tt22074164/" rel="nofollow">Jury Duty</a>,&#8221; a series that&#8217;s billed as a cross between &#8220;<a href="https://www.imdb.com/title/tt0120382/" rel="nofollow">The Truman Show</a>&#8221; and &#8220;<a href="https://www.imdb.com/title/tt0386676/?ref_=fn_al_tt_1" rel="nofollow">The Office</a>.&#8221; The show&#8217;s premise is that a man is asked to be part of a documentary about serving on a jury, but unbeknownst to him, everybody else is an actor and the case is fake. Crazy things happen, and what makes the show funny is that we witness it through the eyes of someone who&#8217;s expecting solemn official proceedings and doesn’t know everything is staged.
Living under the cloud of terminal illness provides ample opportunity for the unexpected. Serious subjects become fodder for banter in our household.
The kids and I surveyed the cemetery after a recent <a href="https://alsnewstoday.com/columns/honoring-family-memorial-day-visit-cemetery/">Memorial Day</a> service, and we discussed if their dad and I should be buried in one of two sections: an old one near my aunt and great-grandparents, with mature trees and shade, or in a newer section on the other side, near my grandparents and dad.
As we debated the merits of cremation, green burial, and traditional burial, we laughed at the absurdity of the conversation. It feels so strange and different from the average family at our life stage.
When friends came over for dinner recently, Todd mentioned his idea to build a glass vestibule inside one of the entrances at the church where our friend works. “When I&#8217;m gone, you can call it the Todd Neva Memorial Vestibule,” he said. And then we discussed who&#8217;d preach at his funeral. We laughed, because these are not normal conversations.
Another friend and I went for a walk, and she reflected on our laugh-filled conversations with Todd and her husband. “You talk about death so casually,” she said.
“Well, we’ve been living with this for <a href="https://alsnewstoday.com/columns/trying-see-beauty-after-13-years-with-diagnosis-als/">13 years</a>.”
If we didn’t laugh, we’d just cry. It feels surreal to live our lives on <a href="https://alsnewstoday.com/columns/burden-knowing-future-farewell-lulu-wang/">the edge of death</a>, and laughing at the absurdity of it has become a way to cope.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: families

How hope is everywhere when our community gathers

We’ve developed a dark sense of humor living with ALS