MDA Ambassador Guest Blog: How the Power of a Few People (and a Dog) Can Change Your World

David Daw is 56 years old and lives in Kingston New York with his wife of 36 years. They have one daughter and four grandchildren. David was diagnosed with myofibrillar myopathy and spheroid myopathy. He is a musician, guitar tech, and dog lover. He and his wife currently have two Mastifrenchies !

I was officially diagnosed with myofibrillar myopathy and spheroid myopathy Dr. Hirano at the Columbia University MDA Care Center in NYC on July 4, 2023, after struggling with symptoms my entire life.  My doctor suggested that I register with MDA.  Within a day or two, I was contacted by Michelle Pagán, a Senior Support Specialist at MDA. At first, I was skeptical and figured this was just a money grab. I was even rude, to the point of hoping she would stop calling. What I didn’t realize was that she was a resource and support that would forever change my life.

Learning to lean on supports

Dave with friends Adam and Nadine

After a few discussions with Michelle, I realized that she was someone that I could trust and that was knowledgeable about my experience. I told her that my biggest struggle was that I needed to use a wheelchair now and I just couldn’t bring myself to do it. She suggested that I join the MDA Community group for newly diagnosed people.  At first, I blew it off, thinking I am just not the type for community groups. Or so I thought. As things started getting darker and I inched closer towards depression over my circumstances, my wife became more aware that I was struggling. She insisted that I see a psychiatrist or at least try joining the group. As one who hasn’t done well with psychiatry in the past, I opted for the community group – secretly thinking that I would go once and that would be it. Also wrong!

When I went to my first meeting with the group, I had no clue how to use “Microsoft Teams” or how to get my microphone to work. Once we got that straightened out, I rudely introduced myself, saying that I was forced to come to the group, that I hate Teams, that I hate groups, and that I really hate seeing myself on camera and talking about this. I definitely started out with a negative mindset, but that soon changed as I began to open up to the others on the call.

I then explained that my biggest fear was using a wheelchair and that I hadn’t left my house for over 3 years, except to go to medical appointments and Walgreens. Almost immediately, Dr. Priya, who was facilitating the group, and the other individuals knocked down my walls and helped me to drop my guard. We discussed all of the reasons why I felt the way that I did about using a wheelchair, and they all understood. I had finally found my people!! People that could relate to me and I could relate to them.

Finding strength in connection

By the third meeting that I attended, another member of the group named Lisa decided that it was time to really motivate me to try using a wheelchair. Lisa was a force to be reckoned with. She had this amazing gift of knowing how and when to put pressure on someone to really inspire change and growth. I promised the group that I would at the least get the wheelchair out and try it before our next meeting.

Dave shopping at Lowe’s

That week I kept putting it off. When two of our dear friends, Adam and Nadine, stopped by, we had a long talk that resulted in me making a promise to them as well – that I would try the wheelchair. They called to follow up a few days later, holding me accountable to my promise. Even though I didn’t want to do it, I had to follow through.

My wife and I loaded the chair into our vehicle and drove to Lowe’s to look at tools, something that I always enjoyed but hadn’t done in ages. We sat in the parking lot for about 15 minutes – and I just couldn’t bring myself to do it. Just as we were about to leave, I said, “I can’t let everyone down without at least trying it.” Honestly, I couldn’t face Lisa if I didn’t try.

Off we went. Shaking. Scared. And not knowing what was going to happen.

Overcoming fear and embracing freedom

The first thing that I realized was that I no longer had to chase after my fast-walking wife.  I then realized that I could go anywhere in the store. Something I hadn’t done in years. Just as we were getting ready to check out, I decided that I needed to check one more thing. I ventured off on my own with my chair, but just as I went down the aisle, I saw someone that I recognized. I did not want them to see me in my wheelchair. I quickly went back to my wife at the check-out and said, “Let’s go now!!”

ChicoLu

She wasn’t sure exactly what had happened, but she knew I was running from something. As I rushed her to leave, she gave me “the look” and said sternly, “go back down that aisle.” (All men know that look.)  I reluctantly, but quickly, went down the aisle. As I rounded the corner, hoping not to see anyone else when, to my surprise, I spotted a French bulldog in a wheelchair! I stopped to meet him and his owner, Agaphen. Agaphen explained that his dog, ChicoLu, had been in a wheelchair for 5 years and that he loves it. We chatted a bit and I learned that Agaphen actually made wheelchairs for animals for a living. Needless to say, my mind was blown, and I couldn’t help thinking how much joy and freedom the wheelchair offered ChicoLu

As we said goodbye and my wife and I drove off, the tears just started coming as a wave of emotion and relief hit me. Had it not been for my MDA group, my dear friends, and my wife never giving up on me, I would have never met Agaphen and ChicoLu. Without that experience, I think that things would have turned out very differently in my life. I thank God that they happened to be at the store when I was there and that they took the time to talk to me and wake me up. The support that I found in my community group empowered me to go out into public using a wheelchair – and ChicoLu made me realize that I could find freedom by embracing my wheelchair.  (It’s crazy to think that a dog could completely change my perspective but also makes sense if you know me. Dogs are a huge part of my life.)

Celebrating community

I couldn’t wait until the next meeting to tell everyone in the group. To thank everyone. To let them know that they literally saved my life.  That they gave me back my freedom. That they gave me back myself.

That pivotal experience happened about one year ago and since then, I have grown so close with many others in the group. We have been there for each other at our lowest and highest times.  We have formed unbeatable bonds that mean the world to me. Priceless bonds. I look forward to each and every meeting. I even became an MDA Ambassador to advocate for others living with neuromuscular disease and to pass on to others what this group has given to me. I truly believe that the MDA community group is MDA’s biggest asset.

Author’s Note: I would like to dedicate this blog to my dear Lisa, who we lost in February to muscular dystrophy. You made not only my world, but the entire world, better. Run free of pain, my sweet girl. No more worries! It’s my job now to pass along all that you have taught me.