Guest Voice: Redefining friendship when ALS entered our lives
A caregiver shares her experience stepping in when a dear friend was diagnosed
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While a bond of mutual affection can define friendship, the truest of friends share more than that. These types of friends are irreplaceable and more embedded in our lives and hearts than others. Deep friendship requires each friend to call upon the other for help and support, even in the most difficult times.
Often, the chosen love of friendship creates a closeness that allows the sharing of ourselves in a way that we do not always get to — or choose to — experience with our own family. However, this connection sometimes requires that we put in place protective boundaries or guardrails to safeguard our vulnerable selves. Sometimes, though, life throws curveballs that demand we let those protective walls crumble.
When my dear friend Kurt was diagnosed with ALS in February 2021, he was newly divorced and didn’t have children or family in a position to assist him as the disease progressed. After the diagnosis, as doctors were telling him to prepare for the inevitable, he had to face a harsh reality: Who would help him as the horrific disease progressed? Asking someone for the level of support and care that ALS requires wasn’t something Kurt was willing to address straight away. So he didn’t.
In early 2022, I began visiting Kurt often. During that year, his condition began to deteriorate significantly, and it became clear that he’d need consistent support and help. Kurt, who had always been fiercely independent, wrestled with the idea of surrendering himself to someone else’s care. He didn’t want to become a burden to anyone. However, the disease’s progression forced him to face the unavoidable: that it was time to ask for help.
Allowing vulnerability
After long discussions about preserving his dignity and providing necessary help, Kurt, with great hesitation in his voice, asked me if I would be willing to be his caregiver. With my husband’s blessing, I temporarily moved from Orlando, Florida, to Houston, Texas, in March 2023 to be by Kurt’s side full time.
Kurt Ewen and Cristy Hardin attend an event in Houston in September 2023. (Courtesy of Cristy Hardin)
ALS, with its relentless progression, quickly erodes one’s independence, and each day felt like a battle against the steady encroachment of the disease. Once-simple tasks like eating, using the restroom, bathing, dressing, and walking became insurmountable obstacles. Kurt’s stubborn demeanor led to his resistance to my assistance with basic tasks early on. Still, eventually he had no choice but to allow me to help with everything. ALS presented a new challenge each day, and caregiving required us both to constantly adapt.
For most of his life, Kurt had a closed-off and private nature. In time, he began to open himself up to me in ways he hadn’t before. As ALS robbed him of his physical abilities, he allowed himself to be vulnerable. He spoke candidly about his life, love, dreams, fears, and thoughts on anticipatory grief — describing ALS as a kind of “abusive relationship” that took everything from him one piece at a time. Kurt’s vulnerability was both beautiful and heartbreaking, ultimately forging a bond between us that I will cherish forever.
One rainy Saturday about a week before he died, we spent hours looking through old photos. Kurt recounted adventures from his youth, shared memories of studying to be a priest, and talked about his love for travel and his fascination with bridges. I could see glimpses of the vibrant, adventurous person he had been while he talked about his life before ALS.
Kurt passed away on Oct. 21, 2023. The time I had at his side filled me with gratitude. Being his caregiver was not easy — it required strength, patience, and resilience — but it also taught me about the depth of love, friendship, and the power of choice. Kurt showed me that, even in the face of a devastating illness, it’s possible to live fully and connect deeply. He proved that the loss he experienced didn’t overshadow his legacy. He was a remarkable person who faced ALS with courage and authenticity. I am honored to have been part of his journey.
Through my care, I hope Kurt felt supported and loved. I hope he knew that the people he encountered didn’t see him as a man with ALS. He was a friend, a visionary, and a bridge builder who touched the lives of everyone around him.
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