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It Was The Worst Of Times Becoming The Best Of Times

January 2024 – by Steve Saling

Life is full of surprises. This story has a good ending despite the rough start. The past three years have been horrible for me. The ALS Residence at the Leonard Florence Center for Living (LFCL) is licensed as a nursing home, so they were compelled by law to lock down our house during of the pandemic. We were under the equivalent of house arrest for a year and a half. It was an awful time. We were quarantined and isolated. No friends or family were permitted. All our caregivers wore masks and gowns and face shields. It was dreadful but at least no one got COVID.

The quarantine lockdown was finally over in the summer of 2021 but then the real nightmare began. ALS has long given me a severe drooling problem and my secretions got so bad that I was recommended to get a tracheotomy even though I am fortunate enough to breathe without difficulty 17 years after diagnosis. In August 2021, I got the trach, and it was an easy transition to make since I could still breathe well. The problem was a second surgery to get my feeding tube relocated. I was told that my old stoma would heal quickly. It did not. I had a quarter inch hole in my belly that refused to heal. Any food, water, or medicine that I put in my stomach would come right back out. I was in the hospital for two months being fed intravenously and it was miserable. For the first time in my 17 years of living with ALS, I questioned my willingness to live. It was the lowest point in my life.

The best part of hitting rock bottom is that up is the only way to go. After three or four more

surgeries, the doctors finally closed the hole and I got to go home. There was a little anxiety getting used to sleeping with a ventilator and being suctioned all day long. Fortunately, the ALS Residences at the LFCL, where I live, had just established two houses of 10 people specifically for people living with a ventilator. They hired a bunch of excellent respiratory therapists.

After all my pain and suffering, my life was about to change for the better. One of my RTs was funny and beautiful, and I fell in love with her. More importantly, she fell in love with me. If you know Kate Smith, then you know that she has the energy of 10 people. She quit her job at the ALS Residences so that we could pursue a relationship with no constraints. April 1st will be two years since she left the LFCL so our relationship could blossom. It has blossomed and I knew I’d like to return that commitment by asking her if we can spend the rest of our lives together. She said yes so, we’ve been engaged since New Year’s Eve. We plan to tie the knot this summer. God willing, we will grow old together. I have never been happier. Life is GOOD!


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