Diagnosed with ALS in February 2011 with bulbar ALS, Mickey Johnston is a U.S. Air Force Veteran. He lives in Atlanta, Ga. with his wife and caregiver, Debbie. They have been married for 37 years. We are thrilled to share Mickey’s story of how he started the “Shy-Dye Love Ministry” that brightens the lives of people living with ALS all over the world.
On Facebook, Mickey is known as “Shy Tuna.” “About a year into my journey with ALS, we realized how slow progressing my ALS was. I was very grateful and felt like I wanted to give back to the ALS community somehow,” Mickey says. He met some people living with ALS on Facebook in the Atlanta area and wanted to visit them. He explains, “I just wanted to talk or sit and just be there as someone who gets what they are dealing with.”
The first couple he went to visit was Hope and Steve Dezember. Steve was diagnosed in his late 20’s and after just a couple of years, he weighed about 85 pounds, was 90% paralyzed, using a feeding tube, had no voice, and on a ventilator at night. “I decided to bring him a tie-dye shirt to try to brighten his day,” Mickey says. “Steve really lit up when I gave him the shirt! I knew right then that this was going to be my thing. My purpose. My ministry. The ‘Shy-Dye Love Ministry’ was born that day.”
To date he has personally given or mailed out 671 “Shy-Dye” shirts, all over the U.S., and in 14 countries around the world. “Nothing brings me more pleasure than seeing one of my ALS brothers or sisters proudly wearing their ‘Shy-Dye’ shirt. Not even a viral puppy video. Nothing,” he says.
He will send any person with ALS, anywhere, a ‘Shy-Dye’ shirt for free. Just contact him through Facebook.
ALS has impacted every aspect of Mickey’s life in either a negative or positive way. He is careful to not let it define who he is. “I don’t live my ALS, I live with it. I have never thought, why me? Why not me? I’m no better than the guy next door. Don’t get me wrong, I don’t like having ALS, but have been ‘freakishly’ ok with it from the beginning. Yes, I miss my old life very much,” Mickey says. He was a commercial builder in Atlanta, an avid dirt bike rider, and a very active outdoorsman. He retired at age 51, allowing him time to travel all over the country and halfway around the world.
“I think the biggest positive impact on me started with the most negative one. Dying. What it means to not be here anymore. What that looks like. What about my wife, daughters, and granddaughter? The house? All the junk I’ve accumulated in 30+ years of marriage? Where will I be buried? Suddenly I was having to deal with all of this. Learning how to die.”
He continues, “In the words of our late, fellow person with ALS, Morrie Schwartz (from the book Tuesday’s With Morrie), ‘Once you learn how to die, you learn how to live.’ I’ve learned how to live, and I do my best to do it every day, in a positive way. We are not promised a tomorrow, but the today we already have. That is a blessing I’m thankful for each day.”
The ALS Association has helped Mickey the most through the many people that work or volunteer there. “They restore my faith in people. People without ALS, helping people with ALS.” He continues, “Outside of The ALS Association, there is not many people doing that. In fact, the people outside The ALS Association that are working the hardest for people with ALS are the people with ALS! We have a vested interest.”
Mickey continues, “As an Air Force Veteran, all my medical, equipment, vehicle, and financial support is provided by the Veterans Administration. I’m very fortunate to have that, but many are not. They rely on The ALS Association for resources, support groups, equipment programs, and more. That is how The ALS Association helps me, by helping my fellow people with ALS. We are family!”
“Many people, including those of us before we had it, never heard of it or knew nothing about it. Google ALS/Lou Gehrig’s Disease, and read what us, people with ALS, read when we first hear those three letters. It’s messed up. I have seen it take people in as little as eight months. I have lost over 100 ALS friends in the last three years. It’s messed up. Please educate yourself about ALS. Please have a conversation about ALS. Please care. Please give what and all you can to The ALS Association and help us fight this.”