Living with ALS: No Longer Afraid of the Beach


Michael Marsala and his wife Debbie
Michael Marsala and his wife Debbie

When you are diagnosed with a form of a disease like ALS, your world changes forever. I think I have handled my situation quite well. My favorite phrase is, “Life gave me lemons, so I’ll make lemonade!” At first it did not seem too bad. My speech was slightly affected, but that was easily overcome by not using words I had trouble saying. I kept adapting as my situation worsened. I had to retire. I started using a wheelchair and a walker to get around, and a lift chair to help me rise. I made sure there were no obstructions in my path while walking, and gave up many things I did before.

My wife Debbie is there for me. She arranged with my insurance company to optimize my health benefits and sought out support groups for her and I to get ideas on living with a disability. I have tried acupuncture, chiropractors and Reiki therapy with little results. Although I am a realist, I am not a fatalist. I do not resist help or change, when needed, because I need to adapt to my changing situation, even now that I use a wheelchair exclusively.

So just when you think you have everything under control, life hands you something you’re not expecting. On our winter getaway we go to Ocean Alley on Hollywood Beach to have a good breakfast by the ocean. I love being there, looking at the sea and sand, and watching the people enjoying the beach. One day, as Debbie and I were leaving the restaurant, I looked at the sand just a few feet away. Suddenly I was drawn to it. Now mind you I haven’t been on the beach, or had the desire to, since my diagnosis. Remember, I am a realist and I know the sand is soft and can shift so the chance of falling is good, but for some reason I could not resist it. I hesitated taking my first step on the beach, fearful of what might happen. I then put my other foot on the sand. I was on the beach with Debbie by my side. I used my walker — taking step after step on the sand. I could not believe I was no longer afraid of the beach.

Just then a sudden rush of memories washed over me, just as countless waves did when I was young. I saw myself as a young boy at Tanner Park in Copiague, N.Y., with my brother and friends swimming and playing. I was surfing and swimming at Long Island’s Hemlock Cove, and on Oahu, Hawaii, with Debbie on our honeymoon. Countless memories ran through my mind as I stood there. Standing there for that moment I cried and laughed at the same time. I was truly happy, no longer fearing the sand.

As I think back on that moment in time, especially now I’m in my wheelchair, I am no longer fearful of the sand. Maybe I have to rethink about what I no longer do, and not allow my disability to be a handicap. Also I am rethinking my favorite phrase. After all, besides lemonade, there are a lot more things you can make with lemons.


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