Becoming Kurt’s full-time caregiver in the last stages of his battle with ALS was one of the most challenging yet meaningful experiences of my life. Our journey began in 2006, when we met at Valencia College in Orlando, Florida. Back then, Kurt was a dynamic leader, focused on student success and driving positive change. Later, in 2017, when he moved to Houston Community College (HCC) to serve as Chief of Staff & Vice Chancellor, his dedication to education only deepened. When ALS entered his life, Kurt faced it with an astonishing resilience, and in 2023, I stepped in as his primary caregiver to support him in his final months.
By early 2022, Kurt’s condition had deteriorated significantly, and it became clear he would need close, consistent support. With my husband’s blessing, I made the temporary move to Houston in March 2023 to be by Kurt’s side full-time. It was a decision neither of us took lightly. Kurt, who had always been fiercely independent, wrestled with the idea of surrendering control. He didn’t want to become a burden and found it difficult to rely on others. But he trusted me, and as his caregiver, I was honored to help him navigate a path that had grown increasingly narrow and difficult.
Caring for Kurt was both physically and emotionally taxing. ALS, with its relentless progression, quickly erodes one’s independence, and each day felt like a battle against the steady encroachment of the disease. Tasks that had once been simple—walking, eating, brushing teeth—became insurmountable obstacles. Over time, Kurt required help with everything, from dressing and bathing to managing medications and preparing meals. Each task was a reminder of how much ALS had taken from him, yet he faced these losses with a quiet dignity that amazed me.
One of the hardest parts of caregiving was managing the fine line between preserving Kurt’s dignity and providing necessary help. Kurt was a proud, self-sufficient person who valued his autonomy. Early on, he resisted my assistance with basic tasks, but as his muscles weakened and his coordination worsened, he had no choice but to allow me to step in. It was a humbling experience for both of us. I respected his desire to remain as independent as possible and did my best to create an environment where he could still feel in control.
Every day brought a new challenge, and caregiving required me to adapt constantly. There were countless medical appointments, coordination with healthcare providers, and ensuring he had access to the right therapies and treatments. I quickly learned to advocate for him, especially as he struggled to communicate his needs.
Despite the exhaustion, there were moments of genuine connection and joy between us. Kurt had a way of making even the heaviest situations feel lighter. He began to share his innermost thoughts and fears, talking about life, loss, and love in ways he hadn’t before. One rainy Saturday, we spent hours sifting through old photos, with Kurt recounting his adventures from his youth. He spoke about his days as a young man studying to be a priest, his love for travel, and his fascination with bridges—a passion that would later inspire him to see his life’s work as a form of bridge-building. Looking at those pictures, I could see glimpses of the vibrant, adventurous person he had been before ALS entered his life.
Kurt’s vulnerability was both beautiful and heartbreaking. As ALS robbed him of his physical abilities, it opened him up in ways he hadn’t expected. He allowed himself to be seen, not just by me but by a small group of close friends and colleagues, and he spoke candidly about his struggles and fears. He shared with me his thoughts on “anticipatory grief,” describing ALS as a kind of “abusive relationship” that took everything from him, one piece at a time. His honesty brought us closer, and I learned to see his courage not just in his work but in his willingness to confront his own fragility.
Yet, no matter how much he lost to ALS, Kurt held onto his sense of purpose. He continued working long past the point when others would have retired, attending HCC board meetings and speaking to his colleagues, determined to make a difference as long as he could. When he finally announced his medical leave, many of his team members were shocked; he had concealed his pain and limitations so well that few understood the extent of his suffering. Watching him balance his work with the day-to-day struggles of ALS was inspiring but also difficult, as I knew how much each step, each word, each effort cost him.
Kurt cherished the moments when he could simply be himself—“just Kurt”—without ALS defining him. He loved gathering with friends for evenings filled with laughter, deep conversation, and even occasional tears over a glass of wine. He called these gatherings his “mood crack,” a way to feel normal and alive, not just a man with ALS. These moments of joy and connection reminded us all that he was still Kurt, vibrant and full of ideas, even as his body betrayed him. As his condition worsened, he started the “Walk n Roll Band” on Sundays, a time when friends would walk alongside him in his wheelchair, sharing stories, thoughts, and companionship. These walks, along with the gatherings in his apartment, became highlights of his week, giving him a sense of connection and peace, a reminder that he was still very much a part of the world.
In his final weeks, Kurt spoke openly about his decision to avoid the end stages of ALS. He wanted his friends to remember him as he was, not as a man defeated by the disease. One of his last speeches at HCC resonated deeply with everyone who knew him. He said, “ALS sucks! And I will not let my friends go through the end I know is coming.” Kurt didn’t want ALS to define his last chapter; instead, he chose to leave on his own terms, maintaining his dignity and control over his narrative.
Kurt passed away on October 21, 2023. Reflecting on those final months, I am filled with a sense of gratitude for having been by his side. 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, to connect deeply, and to be remembered not for what was lost but for the legacy left behind. He was a remarkable person who faced ALS with courage and authenticity, and I am honored to have been part of his journey.
I hope that, through my care, Kurt felt supported and loved, that he knew he was seen not as a man with ALS, but as a friend, a visionary, and a bridge builder who touched the lives of everyone around him.
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