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Spark of Hope: Shannon’s Inspiration

Shannon Scaletti (left) poses with Sue Walsh during Sue’s retirement party. Thank you, Sue, for your incredible work to support ALS patients and families for nearly 30 years at the ALS Treatment Center at Penn State Health Hershey Medical Center.

By Shannon Scaletti, RN, BSN

Shannon Scaletti recently joined the staff of ALS United Mid-Atlantic as the new Clinic Coordinator at Penn State Health Hershey Medical Center. This is her story about her personal connection to ALS that drives her to this day.

When I think of ALS, I think of Steve.

Steve was the first patient that I had ever taken care of who had ALS. I was working as a hospice nurse, and it was my first hospice job where I would visit patients in their own home. I met Steve not long into my new position. Steve was a beloved pastor in the local area. So many people had looked to him for advice but now he was looking to me.

We clicked right away and would spend time chatting about all sorts of things, often about his wife and kids. At first his wife was still working part-time, but several months into her husband’s battle with ALS, she had retired early so that she could help take care of him. She effortlessly fit into our visits and conversations.

Steve’s main and nearly only symptom was impaired breathing. He could still walk, talk, and eat up until the end of his life. Although everything became increasingly difficult as his breathing worsened. He was always pleasant and never complained. It was hard to watch him and see how difficult it became for him to breathe.

I sensed that Steve was at peace with the idea of death and he communicated that as well; however, he was very scared about the process of death. This is what we commonly refer to as “active death” in our field of work. It usually lasts around 3 days or so, but sometimes can last a little longer. He asked me a lot of questions about it and confided that he did not want to go through it.

Steve insisted that it would be me who would be there when he did pass (not another nurse). I reassured him that I would do everything in my power to be there. I told him that although I couldn’t promise him how it would go, that in my experience many patients with advanced respiratory disease often just stop breathing one day without much warning. Since I knew of his religious beliefs and standing as a well-loved pastor, I told him he could ask God for that.

One evening as his disease had progressed and he became very “tired”, he passed. His wife told me that they were just doing their normal bedtime routine, getting ready for bed, and Steve just got a look in his eye. Before she knew it, she could tell he was gone. Although I was sad for his family and knew I would also miss Steve, I was happy for Steve because I knew that is how he wanted to go. I like to imagine how beautiful and peaceful that passing may have been for him.

When I came into my new position as Clinic Coordinator at Penn State Health Hershey Medical Center, I had been praying for the right job to come along and this opportunity fell into my lap through a friend of a friend. While in the process of multiple interviews, I suddenly had this feeling that Steve had something to do with all of it. Once I had been offered the position, I reached out to his wife and told her that I felt Steve had something to do with it. She was thrilled for me, and we caught up a bit as we still talk from time to time. She graciously offered for me and my daughter to come visit her at her new home in Nashville whenever we want. Steve’s legacy lives on and helps me care for others who face the same unfortunate illness. I’m so glad that I met him!

Shannon’s story reinforces the true heart of the mission of ALS United Mid-Atlantic to provide a personal connection and specialized care to all those impacted by ALS. Thank you to Shannon for sharing her story. Make sure to say hi to Shannon at the Hershey ALS United Walk on Saturday, June 8th.

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