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When I look back at photos from when my late husband, Jeff, was <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a> — something I do often to find inspiration for <a href="https://alsnewstoday.com/thunder-road-juliet-taylor/">this column</a> — I&#8217;m struck by how many of our happier memories took place outdoors, even in the advanced stages of Jeff’s illness.
I guess that shouldn&#8217;t surprise me. Before his <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, we were outside all the time. When the condition became a part of our lives, we didn’t think to change that, nor was there any immediate reason to. I vividly remember the day his <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a> was confirmed via a second opinion in Baltimore. Once we arrived home, we instinctively sought solace outside, sitting on one of the two wrought-iron patio chairs that we kept by the little pond in our yard.
Those chairs and that spot provided consistency and reassurance for us for the next year that we lived in that home. We’d start and end most of our days in those chairs, bundling up on the coldest days and soaking in the warmth on the summer ones. Our dog, Rudder, would always be with us, darting in and out of the tidal grasses, looking for fish and making us laugh. We also had our heaviest conversations out there. There was something about being outdoors that soothed both of us and also made us feel connected to something larger. I think it helped each of us find strength and perspective.
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<h3>A source of comfort</h3>
I find myself thinking about the peace that being outdoors brings, as warmer days work to break through here in Maryland, where I live. Although we still seem to have more cool days than warm ones, the season reminds me of how relatively healthy it felt to be outdoors during the time that Jeff was living with ALS. Every person, every family experiencing ALS has something unique to them that brings comfort, and this was ours.
<figure id="attachment_91249" aria-describedby="caption-attachment-91249" style="width: 380px" class="wp-caption alignleft"><img loading="lazy" decoding="async" class="wp-image-91249 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2024/04/jeff-juliet-athabasca-river-380x284.jpg" alt="A man and a woman, both wearing yellow ponchos and red life jackets, sit on an orange raft while floating down a Canadian river. The water behind them has a green hue, and the riverbank is full of pine trees. It's a gray day, but the couple smiles happily." width="380" height="284" data-wp-pid="91249" /><figcaption id="caption-attachment-91249" class="wp-caption-text">Jeff Sarnacki and Juliet Taylor enjoy a day of floating on the Athabasca River in Alberta, Canada, in June 2019. (Courtesy of Juliet Taylor)</figcaption></figure>
That doesn’t mean that spending time outdoors was easy to navigate. Jeff’s <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> had started with a foot drop, and while he was able to walk outside for a few months after his diagnosis, we quickly and progressively moved from an orthotic to a rollator, to a scooter, to a power wheelchair. We chose models that allowed for Jeff to get around more easily, but it was still unwieldy to travel with this <a href="https://www.youralsguide.com/als-equipment-guide.html">equipment</a>.
Jeff was eager to travel for as long as he could, and in retrospect, I observe that we chose destinations based on outdoor activities. Our most meaningful journey while living with Jeff’s ALS came about nine months after he was diagnosed, when we traveled with two of our best friends to <a href="https://parks.canada.ca/pn-np/ab/jasper">Alberta, Canada</a>, for 10 days of wildlife viewing. We had running contests around animals spotted: first bear, most bears in a day, and so on.
Our friends Robin and JJ knew the ins and outs of ALS very well by then, staying by our side literally and figuratively throughout his illness. Encouraged by Jeff, we pushed the limits on that trip, taking his scooter off-roading (unintentionally) in national parks and persuading a rafting company to let us float down gentle rapids, even though Jeff could no longer climb into the boat. When I look at those pictures, I see the wonder and contentment in his eyes — and in mine, too.
<figure id="attachment_91250" aria-describedby="caption-attachment-91250" style="width: 380px" class="wp-caption alignright"><img loading="lazy" decoding="async" class="wp-image-91250 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2024/04/jeff-rudder-hilton-head-380x277.jpg" alt="A low-angle photo shows a man bundled up in a dark jacket and jeans walking on the beach with a dog. Both the man and the dog are holding either end of what appears to be a toy or stick. It's a cloudy day, and the waves lap gently against the hard-packed sand." width="380" height="277" data-wp-pid="91250" /><figcaption id="caption-attachment-91250" class="wp-caption-text">Jeff Sarnacki and his dog, Rudder, play on the hard-packed sand of Hilton Head, South Carolina, in February 2019. (Photo by Juliet Taylor)</figcaption></figure>
On another occasion, earlier in his illness, Jeff researched beaches based on the density of the sand because he could walk more easily on packed sand than on looser, more precarious ground. It’s for that reason alone that we found ourselves in <a href="https://www.hiltonhead.com/">Hilton Head, South Carolina</a>, in February, enjoying brisk walks on the beach with Rudder while Jeff was still able.
Whether it’s the change of seasons right now or the fact that next month marks the anniversary of both Jeff’s birthday and his death five days later, I&#8217;m feeling increasingly reflective about what life with ALS felt like and what it meant; what I learned and what I regret; what brought us joy and what we struggled with. In grief, I also recognize that reflecting on what brought Jeff and I joy together might also be a path to continued healing as I live without him. For this reason, I’m focused on finding more ways to enjoy the outdoors this spring.
Whether it’s being outside, taking in accessible museums, or hosting family game nights, I think it’s important to find those moments and activities, however large or small, that can bring peace and happiness while living with ALS. For me, fresh air and nature will forever remind me that even in adversity, there are places and moments that offer joy, reflection, and emotional healing.
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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, diagnosis, 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.

How being outdoors brought peace and perspective, then and now

On a bitterly cold morning in New York last weekend, I woke before the sun and walked through the empty city streets to the Times Square subway station. From there, I caught a train to Brooklyn, the starting line for the <a href="https://www.nyrr.org/races/unitedairlinesnychalf" rel="nofollow">United Airlines NYC Half</a>, where more than 24,000 other participants awaited the start of the half-marathon race.
I&#8217;m not a natural runner. In the subway car, I felt intimidated, quietly checking out the other participants headed to Brooklyn. What were they wearing for this weather? What kind of shoes did they have? The closer the train got to our stop, the more my brain tried to convince myself I was out of place.
I quieted my thoughts and kept riding.
My late husband, Jeff, had been the athlete of the two of us. Before his <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a>, he’d been an accomplished cyclist, a physically strong man who’d enjoyed pushing his physical limits and reaping the physical and emotional rewards of exercise. We once joined a gym together and developed an easy competitiveness with each other, our workouts becoming another way to bond in our relationship.
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<a href="https://alsnewstoday.com/living-with-als-2/">Living with ALS</a> and caregiving had taken this away from both of us. Jeff worked to offset his waning physical ability with mental ingenuity, devising new solutions for accomplishing tasks that had required force. We both despaired about his growing paralysis, changing him from someone who’d built retaining walls and treehouses into a person who couldn&#8217;t move his arms and legs. It was among the most cruel aspects of his illness.
As for me, <a href="https://iamals.org/get-help/caregivers-start-here/">caregiving</a> had shifted me into a hyperfocus on Jeff’s well-being. As much as I loved hiking and riding my horse as means to stay active, there simply wasn’t time, and these passions became more distant priorities. After Jeff died, grief and the realities of COVID-19 quarantine kept me sedentary for many months, and my body and mindset reflected it.
About a year after Jeff died, I rejoined a gym, this time going it alone — no Jeff to compete with or motivate me to join him when I didn&#8217;t feel like working out. The contrast was stark, providing yet another reflection of how much <a href="https://alsnewstoday.com/what-is-als/">ALS</a> had taken from him and us.
With the encouragement and guidance of an empathetic and motivating trainer who understood the emotional benefits of physical health, I began to work my way back toward greater physical activity, a process that&#8217;s been rewarding.
I reflected on these rewards on race morning as frostbite settled in my toes while I waited for the start. I leaned against a parked car and wrapped my legs and feet in a heat sheet, a small foil tarp that runners use to conserve body heat.
I thought about my reasons for running. I glanced at the bright purple shirt I was wearing, representing the <a href="https://www.als.net/">ALS Therapy Development Institute</a> (ALS TDI). At the dinner the evening before the race, the 10 of us who’d signed on to run in support of ALS TDI had shared our connections to the disease and our reasons for running: too familiar tales of lost parents, spouses, and best friends.
Our hosts from ALS TDI, who’d encouraged and supported our training and fundraising, shared their gratitude, along with some touching stories about their own mission as the drug discovery engine for ALS. I learned how <a href="https://www.als.net/als-research/meet-our-scientists/">their scientists</a> are so committed that sometimes they’ll spend the night at work, how the walls of their lab are lined with photos of people affected by ALS. They shared how much they enjoy visitors and the <a href="https://www.als.net/als-research/schedule-a-tour/">chance to show people around</a> the Boston-area lab, and I’ve subsequently committed to visiting this year and learning more about their work.
As my toes thawed, I made my way to the starting line, slowly feeling excitement and adrenaline pushing out my self-doubt. I reminded myself of what I’d written in Sharpie on the back of my shirt: I run for Jeff. Mary Ann. Juan. Shelly. Tim. Sandy. Brian. Gil. And many other names of people I love who are living with ALS.
The most beautiful moment of the race, aside from the finish line, was cresting the <a href="https://www.asce.org/about-civil-engineering/history-and-heritage/historic-landmarks/manhattan-bridge/" rel="nofollow">Manhattan Bridge</a> as I crossed from Brooklyn to Manhattan. I could see <a href="https://wtc.com/about/buildings" rel="nofollow">One World Trade Center</a> to my left, and the city skyline to my right. At that precise moment, &#8220;<a href="https://www.britannica.com/topic/New-Year-festival" rel="nofollow">Auld Lang Syne</a>&#8221; — a song about relationships and remembrance — began to play on my earphones.
I’m not a natural runner, but I am a person living with the impact of ALS who&#8217;s taking an opportunity to raise awareness of this devastating disease and the permanent effects it has on families, friends, and communities. My purple shirt, my END ALS license plate, the chance to write this column — all of it is a way to help and heal.
<figure id="attachment_83019" aria-describedby="caption-attachment-83019" style="width: 318px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-83019 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/03/juliet-nyc-half-318x380.jpg" alt="This photo shows a woman with tied-back blonde hair displaying the peace sign with one hand while holding up a medal with the other. She's indoors and wears a purple T-shirt with the words &quot;ALS Therapy Development Institute&quot; and &quot;The Drug Discovery Engine for ALS.&quot; " width="318" height="380" data-wp-pid="83019" /><figcaption id="caption-attachment-83019" class="wp-caption-text">Juliet Taylor displays her medal after completing the United Airlines NYC Half race this month. (Courtesy of Juliet Taylor)</figcaption></figure>
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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: perspective

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