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M. L. Del Bene, MS, RN, NP-P
As a nurse practitioner it has been very difficult to say goodbye to all of the patients, their families and the professionals I have worked with over the years. It is well known that I love to encourage people to tell ‘their stories’ as part of living with ALS. As editor of the ALS Newsletter, and having the opportunity to know I am writing my last edition, I have taken this opportunity to share part of my story from the last decade with you. I believe life is a journey that should be shared with others. My moving on to new territories is a new chapter not only for me but the Center. I want to share just one story with you, yet please know that it was the compilation of many stories of the many people I have worked with that gives me a library of knowledge about living in the presence of disease. For this I am most thankful. ~ I have had the privilege over the last ten years to accompany individuals and their families as they travel with ALS. I look back on one of the first patients I worked with at Columbia in 1994. He and I were both just beginning on our journey with this terrible disease. He was in his mid twenties (as was I at the time), newly married and looking forward to a bright future. Although on the day we met, he and his wife were shocked with the information that his weakness was not treatable. He was visibly angry and not open to dialoging with the medical team about how to address his current symptoms. Despite being new to the field, this couple was encouraged by their physician to talk with me to see if I could help ease their painful experience. In that first session, I offered what I could as a new ALS nurse clinician: being present with them as they tried to reconcile what was happening. I felt incompetent and incapable of helping anyone at the start of such a journey. He left that day after the appointment with the doctor and time with me and I did not see him again for about 6 years. By that time we were both well into our journey with ALS. He had, since his diagnosis, moved into his first home where he and his wife had their first child, a son. I had become an advanced practice nurse and had hundreds of contacts and conversations with ALS patients in the clinic as well as in clinical research studies. The years for both of us had been full of support received from family, friends and healthcare providers; we both had acquired new information on managing the intrusive symptoms of the disease, and ultimately experiencing more than we had anticipated in our young years. With time we had both gained confidence . Despite the apparent parallel process, there was no comparison between our lives; he was fighting for his. His wife contacted me, after all those years at the encouragement of an occupational therapist that was a member of his visiting medical team. The OT was the one-team member he allowed into his private and loving home. She hoped he would be receptive to additional support and symptom management to maintain and improve his quality of living. My initial shock of hearing his name after all those years quickly moved to a feeling of thankfulness. Our journey was now going to resume, along with an opportunity for me to offer more than what I was able to six years earlier. After a home visit and several phone calls to get reacquainted, it became clear that he was not very interested in many of the interventions I was offering. He accepted a communication device and some medication to aid his physical comfort. During the next year or so he joyfully experienced the birth of his second child, a daughter. At this point he was essentially quadriplegic and unable to speak. Yet when you greeted him, and of course as you would with any parent of young children, comment on their beauty or charm, his eyes would brighten and his face would glow. His journey was full of life despite ALS. I recall our last time together; he had made the decision not to have medical intervention for supporting his breathing or declining nutrition. He knew what this meant for his future. Before leaving we spoke of his children and he glowed once again. I was overwhelmed with the positive energy coming from this man who had traveled so long and far, with courage and determination; clearly, though, he was at the end of his journey. I was so thankful for the opportunity to reconnect with him and his wife after so many years. Yet I was also humbled that, after so many years of experience and learning as an ALS professional health care provider, ultimately what I still had most to offer was simply being present with him. ~ It is now ten years later and I think of all of the individuals I have had the honor of being with on their journey. I recall their names, their faces, their stories and their kindness as we learned together how to make life easier and better for them and their loved ones. I have long believed that keeping the focus on the journey and not the destination keeps the act of living the priority. As we all continue on, I wish you peace and happiness. Maura
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It is good to have an end to journey toward;
