By Michelle Reynolds Gray

Note: In recognition of ALS Awareness Month, we’ll be sharing many new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure.

This is the first profile in that series, and it’s written in the volunteer’s own words. Michelle Reynolds Gray has been volunteering to help people with ALS in the St. Louis, Mo., area for more than six years.

I met my first person with ALS in early 2012, a 59-year-old man named John. When we met, he was “locked in” and couldn’t respond to me in any way except with tears.

I visited him regularly until he passed away in July of that year. His sweet mother was with him constantly, and she was the first person to educate me about this devastating disease. I remember her telling me that John understood everything I said.

I’ve called John’s mother every few months since his passing to remind her that her dear son changed my life. She loves those calls!

Meeting John ignited a passionate desire in me to help more people with ALS.

I met Reeta later in 2012, not long after her ALS diagnosis. She had owned a B&B in Utah prior to being diagnosed with ALS, and loved to cook. We would go grocery shopping together and then back to her sister’s kitchen, where she used a white board to write out recipes for me to make.

Some of my best memories with Reeta took place in that kitchen, and I still use her recipes now. Reeta became my dear friend and when she passed away in October 2013, it nearly broke my heart.

By now though, helping these folks was simply what I did. Along the way, I learned that, often, people with ALS are visited regularly by friends and family right after diagnosis, but sometimes those visits begin to dwindle as time goes on.

I’m not casting judgement, as I understand it’s extremely difficult for some people to be around someone who is cognitively just fine, but physically unable to communicate or sometimes even move. I felt my high level of comfort around people with ALS was God-given, and it’d be wrong NOT to help where I could.

In addition to spending time with people with ALS, I began volunteering with The ALS Association St. Louis Regional Chapter in 2013, helping with their annual Gala which turned into an Ice Bucket Bash after 2014’s ALS Ice Bucket Challenge changed the face of ALS funding.

I met Nancy in 2014. She had been diagnosed seven years before and was my first person with ALS with a ventilator that breathed for her. Nancy couldn’t even open her eyes. My “job” was to sit with her, allowing her husband to leave the perimeter of their bedroom. He was always within shouting distance, should something had gone wrong.

I would read to Nancy, sing (poor Nancy!), tell her stories about my own children, and as I got to know her dear family better, tell her things going on in the lives of her children and grandchildren, none of whom lived close by. I also enjoyed painting Nancy’s fingernails and lightly massaging her arms and legs with lotion. Nancy went to heaven in May 2016.

In February 2015, I met Mike Yochim. He had been diagnosed over a year before. Mike was a park planner and ranger for Yosemite National Park and Yellowstone National Park.

Yellowstone is especially dear to him, for it had been a favorite family vacation spot since he was a young child. So powerful is the connection that his first memory as a three-year-old is there, involving his parents, who are now his wonderful and capable caregivers, and his twin brother. (Mike also has two younger brothers.)

He’s an author and wanted to write a third book about Yellowstone, so my “job” was to methodically go through his many shoeboxes of photos so he could choose those he wanted to use in his book. Specifically, I would hold up a photo, flip it over so he could read the back that he had, thankfully, carefully captioned with the date, location, and sometimes a description. He would then indicate if he wanted to possibly use the photo.

I explain all of this to help you understand that this was the start of a huge life change for me. It began with learning basic geography of the Western United States, where I had never been. One funny memory was realizing, after mispronouncing it to Mike countless times when reading his captions, that the word “butte” is not pronounced “butt.” We laughed pretty hard about that one.

Mike had been a HUGE hiker, completing every trail in Yellowstone and many other trails and mountain summits in the West. The photos I was learning about were stunning and I gained more knowledge with every visit.

Our visits became very regular, three glorious afternoons a week. I remember wondering what it would be like to hike as he had done. At the time, I was more than 60 pounds overweight.

In March 2016, I decided to start a sensible healthy eating plan. The weight began to come off. I started going to local parks and walking a little. More weight loss!

In the meantime, Mike finished his book, A Week in Yellowstone’s Thorofare, and I was there the day his copy was delivered. We sat outside in his parents’ garden. I held it up and we leafed through every beautiful page.

By the end of that summer, I had lost more than 60 pounds and achieved my goal weight. Hiking had become my hobby, and my next goal was to go on a backpacking trip. Training for this involved hiking often and increasing the weight in my pack each time. Mike was peppered constantly with my endless questions, but he never seemed to mind being my hiking mentor.

Now, hiking and backpacking are my “getaways” to relax, even though they seem to work every muscle in my body. Last summer, my daughter, a girlfriend, and I went to Rocky Mountain National Park in Colorado, where we climbed several mountains.

We’ll go back this summer, with the goal to summit Longs Peak, a treacherous, 14,000-foot mountain. And this September, I’m doing the 2018 Climb to Defeat ALS in Colorado, a Team Challenge ALS event.

Mike generously gifted me his camping stove and water filtration system, which was an emotionally difficult thing for him. He continues to mentor me on all things outdoors. Every time I do something difficult and consider quitting, I think about Mike and all he continues to do despite his physical disabilities.

For example, immediately after finishing this last book, he started writing another one, which he’s trying to publish now. He wrote all 80,000 words of that book with only the use of his eyes through eye gaze technology and a device provided by The ALS Association St. Louis Regional Chapter.

To say Mike inspires me is a huge understatement.

Recently, I applied and accepted a position as the volunteer and community outreach coordinator for The ALS Association St. Louis Regional Chapter. Although I won’t be volunteering directly with new people with ALS in the future, I hope to work hard to find new volunteers, and nurture the wonderful volunteers we already have. Everyone dreams of finding a fulfilling job that is meaningful to them, and I have certainly found exactly that.

To anyone recently diagnosed with ALS, remember what made you happy before your diagnosis and find a way to continue doing that, even if it’s a modified version. When friends, family, and volunteers offer to help, tell them your desires and collaborate to find a way to “just do it!” Don’t let this disease take away what is the very essence of you.

Finally, to anyone considering becoming a volunteer for people with ALS, you’ll gain more from the experience than you’ll give. I’m proof of that.

And, when the inevitable happens and you lose someone, your heart will feel broken and shattered. Remember this:

Because we loved, there will be tears.
Because we laughed, there will be memories.
Because they lived, there is still joy.

Raise Your Voice with Michelle and us as we increase awareness of ALS and fight for a world without this terrible disease.

Update your Facebook profile with the ALS Awareness frame. Contact your representatives in Congress. Recruit your friends to like our Facebook page or follow us on Twitter. Promote a fundraiser. Host a fundraiser. Register for a Walk to Defeat ALS or a Team Challenge ALS event.

Together, we will be heard.