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<p>A few months after I learned I had <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, I was invited to participate in a walkathon to help raise funds for the <a href="https://www.als.org/about-us">ALS Association</a>. I’m sure my curt reply of “No, thank you” came as a shock to the person inviting me.</p>
<p>At the time, I had just begun using a rollator to help me walk, and couldn’t imagine myself trekking around the high school track where the event was being held. Never mind the suggestion that I could just show up and cheer from the sidelines. <em>Nope!</em> I could barely pronounce the full name of the disease, let alone be expected to fundraise for it. Little did I know how involved I’d be in raising awareness and funds — and in very creative ways — in the following years.</p>
<p>Let me share a few examples, along with the lessons I learned along the way.</p>
<h3>Sharing my ALS story</h3>
<p>One afternoon I was surprised by a phone call from my neurologist inviting me to speak at a local ALS fundraising event. The thought of sharing my personal ALS story with total strangers was intimidating. My mind raced as I wondered exactly what my ALS story was. And if I told it, would I break down in a puddle of tears? Nevertheless, I agreed to do it.</p>
<p>At the event’s conclusion, I felt so happy I was there. That evening, I spoke from the heart, and in return, I felt the compassion in the room and the support surrounding me. My husband and I had a great time and joined in the cheers when the announcement came at the end of the evening that the event had reached its monetary goal.</p>
<p>I learned that, yes, it takes gumption to tell your story. It’s hard to talk about a disease you’re living with and the changes it causes to your life. But people are interested. I’ve learned that opportunities to speak up are everywhere, and it doesn’t have to be a formal event. Simple conversations happen all the time.</p>
<p>[recommended-reading id=84196]</p>
<h3>Entering a contest</h3>
<p>My personal blog, &#8220;<a href="https://alsandwellness.blogspot.com/search/label/About%20Me">ALS and Wellness</a>,&#8221; was only two years old when May rolled around and it was <a href="https://alsnewstoday.com/als-awareness-month/">ALS Awareness Month</a> once again. Still uncertain about how I could participate, I discovered a unique opportunity: <a href="https://alsnewstoday.com/columns/spread-awareness-taking-first-step/">I entered a Best Health Blog Contest</a>. If I won the $1,000 prize, I decided I’d donate it to my local ALS Association.</p>
<p>The contest began with over 100 health blogs representing all kinds of health conditions. Every day for two weeks, I sent short, cheery daily messages to my friends with a quick fact about ALS and the link to vote. At the bottom of the email, I suggested they share my daily messages with their friends. To my surprise, they did!</p>
<p>By the last few days of the contest, mine was among the top three blogs. It was a close race, but with a last push of votes from ALS patients, friends, and friends of friends, my &#8220;ALS and Wellness Blog&#8221; won!</p>
<p>Not only did it feel good to present a $1,000 donation to the ALS Association, but I had also become comfortable talking and writing about ALS. The experience helped me accept the disease and shift my focus to finding ways to successfully live with it.</p>
<h3>When things came to a standstill</h3>
<p>Then there was the year 2020, when, due to the pandemic, ALS Awareness Month faced its biggest challenge. In-person events were shelved as everyone sheltered in place. But ALS doesn’t stop, and neither do resourceful event organizers. I felt pride in their creative solutions.</p>
<p>Keynote speakers presented online, and walking teams went online as well to log their points. Businesses donated a portion of their sales to ALS-related organizations. I had fun discovering their unique campaigns, such as <a href="https://www.dutchbros.com/drink-one-for-dane">Drink One for Dane</a>, <a href="https://a4a.als.net/">Ales for ALS</a>, and <a href="https://inkedforals.com/">Inked for ALS</a>, and encouraging my readers to support them.</p>
<p>Maybe you’re not quite ready to jump into one of the traditional ALS awareness events popping up this month, but we need you. The perfect time to begin is now, and there are lots of easy ways to participate.</p>
<p>Together we can raise awareness. Together we can create a world where we can live well <em>without</em> having to <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a>.</p>
<hr />
<p><em>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.</em></p>


Lessons learned from my ALS awareness experiences

<p>I’ve read dozens, if not more, of the kind of column I’m about to write: first-person narratives that offer advice to one&#8217;s younger self, full of lessons learned from difficult life experiences. Before my late husband, Jeff, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>, I devoured these columns, always looking for some relatable wisdom I could use to better find my way in the world.</p>
<p>Jeff’s diagnosis <a href="https://alsnewstoday.com/columns/how-love-conquered-fear-after-husbands-als-diagnosis/">changed me so much</a> that I now divide my life into two distinct periods: before and after <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. Once ALS hit our family, all of my collected quotations and inspiring phrases went out the window. My go-to phrase in early adulthood — &#8220;Do one thing every day that scares you&#8221; — felt like a mockery. I was doing multiple things a day that <a href="https://alsnewstoday.com/columns/facing-fears-als-show-us-whats-important/">scared me</a>.</p>
<p>Living with Jeff’s ALS meant I had to learn new ways of being, but I didn’t realize what they were until the &#8220;after.&#8221; Following are five things I&#8217;d tell myself before ALS entered our world:</p>
<h3>1. Give up my people-pleasing tendencies</h3>
<p>One trait I developed in my pre-ALS life was a broad desire to meet others’ needs, to make as many people happy, or at least not unhappy, as possible. <a href="https://www.psychologytoday.com/us/blog/living-finesse/202003/what-is-people-pleasing">People-pleasing</a> is impossible to achieve when <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a> because it contradicts the needs of our loved ones.</p>
<p>Meeting Jeff’s <a href="https://iamals.org/get-help/caregivers-start-here/">caregiving</a> needs in a way that provided him with dignity and safety meant that other things had to give. In becoming Jeff’s advocate, it became, as a matter of necessity, much easier to embrace the things we needed and to say no to things that didn’t serve him. Prioritizing in this way gave us focus and clarity, gave him better care, and brought me greater peace.</p>
<p>[recommended-reading id=80871]</p>
<h3>2. Expand my heart to total strangers</h3>
<p>This may seem counterintuitive after No. 1, but it&#8217;s just as true. When living with ALS, we were offered kindness, support, and love from people we’d never met and may never see again. A local hospice volunteer brought me a rose on Mother’s Day and we talked for an hour in my driveway. That morning, I never would&#8217;ve seen that conversation coming or known that I needed it. I cannot recall our exact words, but that time is one of the beautiful moments I remember from life with Jeff’s ALS.</p>
<p>I believe there&#8217;s a recognition of suffering and loss that binds many of us together. Some of the most beautiful gestures came from people who’d experienced this before and wanted to offer comfort, to let us know that we weren&#8217;t alone. One gift left to me by that time in life was that I’m now moved to do this for others, with no agenda or expectation of return.</p>
<h3>3. Give myself and my loved ones grace</h3>
<p>Early on in Jeff’s ALS, my first <a href="https://alsnewstoday.com/columns/who-cares-for-als-caregiver/">caregiving task</a> was to put on his shoes in the morning, as his earliest <a href="https://alsnewstoday.com/symptoms-of-als-2/">symptoms</a> kept him from doing so by himself. I remember one morning inadvertently putting his shoes on the wrong feet and him becoming upset with me, something I still feel bad about because it was — for both of us — about so much more than shoes. For him, it was the first physical loss, and for me, it was the recognition that my strong husband could no longer do this for himself and must have felt great sadness.</p>
<p>Rather than focus on the mistake I made, or his reaction, I learned in that moment — and many that followed — that so often, the feelings surrounding mistakes and missteps are often about more than the actual event.</p>
<h3>4. Laughter is healing</h3>
<p>Many funny things — hundreds, maybe thousands — happened during our time living with Jeff’s ALS. We laughed every day: at the dogs, at the squirrels, at the often ridiculous and frustrating situations that ALS placed us in. While the latter weren’t funny per se, we had the choice to laugh or cry together. Since we did plenty of crying, laughter, when available, always felt better.</p>
<h3>5. Be present</h3>
<p>Days with ALS were long and exhausting for both of us, one day spilling into the next through many sleepless nights. Scary and sad moments abounded, but so did <a href="https://alsnewstoday.com/columns/gift-presence-brought-meaning-love-life-als/">quiet moments</a> when it was just me and Jeff sitting outside watching the birds, learning to communicate without speech.</p>
<p>ALS didn’t change the fact that he was a wonderful husband, loving and loyal. During those quiet moments, we could soak in the love that we felt for each other, a feeling that helped empower us for tough moments ahead.</p>
<figure id="attachment_81791" aria-describedby="caption-attachment-81791" style="width: 285px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-81791 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/01/jeff-julie-beach-285x380.jpg" alt="A couple stands on the beach in the Dominican Republic wearing shorts and sandals. The woman is hugging the man, and both are smiling at the camera. " width="285" height="380" data-wp-pid="81791" /><figcaption id="caption-attachment-81791" class="wp-caption-text">Jeff and Juliet on the beach in the Dominican Republic in December 2019, just over a month after Jeff&#8217;s ALS diagnosis. (Courtesy of Juliet Taylor)</figcaption></figure>
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<p><em>Note: </em><a href="https://alsnewstoday.com/"><em>ALS News Today</em></a><em> 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 </em><em>ALS News Today</em><em> or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.</em></p>


Tag: lessons

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