November 2021
by Deborah Sebesta
When I was first diagnosed with ALS, I thought my life, as it had been, was over, and the only thing I had to look forward to was more debilitation and a slow death. I moved out of my house, entered a nursing home, and prepared to wait. But my life was not over. True, my legs didn’t work anymore, my left arm was getting painfully weaker, and I needed a bipap called a Trilogy to help me breathe for hours, but, thanks to Team Gleason, I was able to spend time with my precious children and grandchildren at the beach for a weekend.
When I thought of ALS charities, I thought of organizations that paid for research and cures. To my surprise, Team Gleason is all about helping us LIVE. To have something to look forward to is more therapeutic, at times, than medicine.
The moment I was told that my daughters and niece wanted to take me to a beloved family summer vacation spot, I started to rally. Could it be possible they could afford to take me there, with the equipment I needed, including round-the-clock CNAs, for an entire weekend? If not for Team Gleason, it was not looking promising. Renting a Hoyer lift, and hospital bed, finding a hotel that would accommodate those pieces of equipment, looked unrealistic, if not totally undoable. My daughters contacted Team Gleason, told them what they wanted to do for me, to let me know I still had some life to live, and asked for help. To their delight, they were heard, and I was on my way to spending time on the boardwalk with my loved ones. To wake up smelling the ocean air, listening to the symphony of gull music, having the day of competent professionals lifting me back and forth onto my wheelchair from my hospital style bed was just what I needed!
They had planned to cover everything I loved, including a boat ride that said they were handicapped accessible! Sadly, when we got to the harbor, the “handicapped accessibility” was two crew members who insisted they could lift me, in my wheelchair, into the boat. It was shocking to my family, how unaware the boat company was of the dangers that involved! Unfortunately, we did not do the boat ride, but opted for the day at the shore, eating creamy ice custard cones, watching the kids on rides, telling family stories, and making memories that would last well past my fight with this disease! We spent the day laughing, loving each other, and getting reconnected with the wonders of nature without the worries of the fatal disease that had taken residence in my body.
Not all medicine comes in a bottle. Some of the best resides in a child’s laughter, the gleam in the eyes of a teen telling of an amazing amusement ride, and the sight of a young couple in love, dancing to the piped-in music in that amusement park on the pier. In other words, Team Gleason made it possible for my family and me to connect with life. We were able to forget, for a moment or two, the devastation of this deadly disease. Thank you! Thank you! Thank you for helping my family provide this magic for me!
