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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

When my late husband, Jeff, and I were <a href="https://alsnewstoday.com/living-with-als-2/">living with his ALS</a><a href="https://alsnewstoday.com/what-is-als/">,</a> we were both drawn to spending time outside.
While this wasn’t all that different from our life before <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, somehow, when faced with his disease, sitting in nature brought a new level of peace that we both seemed to crave. This feeling was never something we overtly discussed — being outside simply became a comforting and easy ritual each day.
In the early days of Jeff’s ALS, I’d grab my morning coffee, Jeff would take his phone for texting, and we’d venture outside together to get our day started. We’d sit side by side in two patio chairs overlooking Maryland&#8217;s <a href="https://arundelrivers.org/our-rivers/south-river/" rel="nofollow">South River</a>, watching our dog, Rudder, wade in the shallows. Frequently throughout the day — Jeff’s care and weather permitting — we’d return to our spots outside to soak up the sunlight and rest.
ALS changed Jeff’s <a href="https://alsnewstoday.com/symptoms-of-als/">physical capabilities</a> with relentlessness and unsettling speed, but it also strengthened our joint resolve to live as normally and happily as possible, for as long as possible. Even as his ALS progressed, taking him from using a cane, then a rollator, then a scooter and a power wheelchair, we kept our habit, our tradition of spending time together outdoors.
<figure id="attachment_83426" aria-describedby="caption-attachment-83426" style="width: 420px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-83426" src="https://alsnewstoday.com/wp-content/uploads/2023/04/jeff-outside-380x285.jpg" alt="A man reclines in his power wheelchair on the grassy slopes of the South River. Two patio chairs are just to his right, placed side by side, and a large red house resembling a barn is in the background. It appears to be a warm, sunny day." width="420" height="315" data-wp-pid="83426" /><figcaption id="caption-attachment-83426" class="wp-caption-text">Jeff enjoys the sunshine and outdoors at his home on the South River in Maryland in the fall of 2019. (Photo by Juliet Taylor)</figcaption></figure>
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In retrospect, I understand that these quiet times outside were an important aspect of our emotional health and well-being. And as it turns out, research bears this out.
According to a review published in 2019 in the journal <a href="https://www.science.org/doi/10.1126/sciadv.aax0903">Science Advances</a>, there is &#8220;evidence that links nature experience with increased positive affect; happiness and subjective well-being; positive social interactions, cohesion, and engagement; a sense of meaning and purpose in life; improved manageability of life tasks; and decreases in mental distress, such as negative affect.&#8221;
Jeff and I moved houses during life with ALS, from a cozy rented farmhouse on a few acres to a more modern and mobility-friendly home just across the <a href="https://www.cbf.org/about-the-bay/" rel="nofollow">Chesapeake Bay</a>. Our regret and sadness at leaving the home in which we’d gotten married — a need dictated, like so many things, by ALS — was mitigated by our happiness at finding another place on the water, this time on a creek that reminded Jeff of his favorite fishing spot with his brothers.
After our move, one of the first <a href="https://www.hopkinsmedicine.org/health/caregiving/assistive-equipment-for-the-home">mobility modifications</a> we made was creating a wider doorway to the level backyard and installing ramps onto the patio and lawn. By this time, Jeff was using the wheelchair full time, and by leaving the doors open, he could come and go as he wished, spending his days watching the wildlife and listening to music while enjoying the peaceful environment and view.
Jeff died in May 2020, five days after his 60th birthday. We’d spent the prior sunny weeks with the patio doors wide open, letting the breeze in, watching the flowers begin to bloom and birds perching at our feeders. I’d bought him a dogwood tree for his birthday and asked him to choose where it should be planted. Today, the tree is rooted firmly in my backyard between me and my view of the water that brought us so much happiness.
When I reflect on our time living with Jeff’s ALS, I remember our days outside not with wistfulness, but with gratitude that we had something distinct from the disease to focus on, bond us, and bring him joy. Because a love of spending time outside was something Jeff and I delighted in sharing both before and during ALS, it became a bridge between two worlds. It brought a way to stay connected to our past and a way to continue to grow our relationship in the present — a means to spend time together quietly, understanding each other without words.
<figure id="attachment_83427" aria-describedby="caption-attachment-83427" style="width: 420px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-83427" src="https://alsnewstoday.com/wp-content/uploads/2023/04/outside-380x286.jpg" alt="A husband and wife take a selfie while standing in their backyard at their home in Maryland. The woman is wearing a pink shirt and has sunglasses resting on her head, while the man is wearing a gray shirt and glasses. Several bodies of water are visible in the background." width="420" height="316" data-wp-pid="83427" /><figcaption id="caption-attachment-83427" class="wp-caption-text">Jeff and Juliet at home in Maryland. (Photo by 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: nature

How being outdoors brought peace and perspective, then and now

How being outside improved our emotional health in life with ALS