Tethered to ALS: A Tale of Love, Loss, and Unbearable Struggles

 

As I sit here, reflecting on my nearly decade-long journey living with ALS, I am overwhelmed by the hardship and unimaginable heartbreak accompanying this devastating disease. My family and I were thrown into uncharted territory after being diagnosed, forced to learn everything about ALS alone. We pushed every milestone to the limit, hoping to maintain some sense of normalcy and independence for as long as possible. Looking back, I realize in my desperate attempt to hold onto my old life. I may have pushed myself and those around me too far.


I tried to drive for too long, refusing to acknowledge the limitations ALS was placing upon me. I tried to walk for too long, hoping my legs would remain strong. I tried to work for too long, determined to continue contributing to my family's financial stability. I tried to stay home without proper supervision for too long, reluctant to admit that I needed constant care. I tried to eat by mouth for too long, throwing caution to the wind and the risks involved. I tried to go without a tracheostomy for too long, avoiding the reality of relying on a machine to breathe. And my wife, Erika, shouldered the burden of being my sole caregiver for too long, carrying the weight of my deteriorating health on her shoulders. Plus, caring for two rambunctious boys and working full-time.


The losses associated with ALS are relentless, beginning from that first twitch and extending to every aspect of life. It's not just the person living with ALS who suffers; it affects their significant other, children, friends, and family. I experienced the painful loss of friends who vanished overnight, unable to cope with the challenges ALS presents to a friendship. ALS caused immense turmoil within my family and strained relationships with friends. It stole the dream of a perfect marriage with my soul mate and being the best dad I could ever be. Every memory my two sons will have of me; will be tainted by the presence of ALS, a constant reminder of the fairy tale life stolen from us.


Throughout my journey, I made difficult choices to extend my life through surgeries—a port, a feeding tube, and a tracheostomy. Each procedure brought challenges, but nothing could have prepared me for the reality of becoming a quadriplegic, relying on a mechanical ventilator for every breath and needing round-the-clock care. The never-ending suctioning, cough assistance, and constant search for caregivers became unbearable for everyone involved. My wife and I haven't spent a night apart in three years, our lives entwined by the demands of ALS.


But the physical toll was only part of the battle. I also fought against panic attacks, anxiety, and depression for two years, my mind plagued by dark thoughts of suicide. I tried every treatment to keep those thoughts at bay, but the frustration and fear were overwhelming. The mental fortitude required to endure the daily struggle was astronomical. As my disease progressed, my limitations and frustrations grew exponentially. My stamina decreased, and even simple tasks became grueling for my caregivers and me. I became temperamental, often losing control of my emotions. Even my eyes began to fail me due to the constant use of my eye gaze communication device. Despite religiously applying eye drops and using warm compress eye masks, my eyes were so dry that I struggled to open them to call for help.


My wife, my rock throughout this journey, has not had a complete night's rest in almost five years. The toll on her and our family cannot be measured. The end stage of ALS is as devastating and gruesome as any war or movie. I would not wish it upon anyone. The most demoralizing part of my ALS journey was the realization that my options were limited. I could wait for an infection or natural causes to end my life, not knowing how much time I had left, or make the agonizing decision to disconnect from my ventilator. Unfortunately, my home state of West Virginia does not have a death with dignity law, forcing me to face this choice. No one should have to die in such an unfortunate way, and it breaks my heart to know that others may face a similar fate.


Despite the immense suffering and unimaginable loss, my ALS journey was not entirely bleak. I had the privilege of witnessing my beautiful sons grow to four and five, respectively. I was married to the love of my life for almost seven years, cherishing every precious moment we had together. People often asked me, "Why me?" And I hope my answer resonated with them through how my family and I lived with ALS. I turned to my faith in God and used my platform to educate and advocate, striving to help #EndALS. Recognizing the need for increased awareness in my local community, I created my own ALS nonprofit organization, the SETH Project. I organized an annual Lou Gehrig Day celebration with the WV Black Bears baseball team to shed light on the devastating impact of this disease.


In the face of a terminal illness, I chose to live life to the fullest. I loved my wife and sons with every ounce of my heart, never allowing ALS to steal our joy and love. Though I may have drawn the short end of the stick in life's lottery, I made it my mission to live every day to the very last breath. As my time draws near, I hope my friends, family, and fellow ALS warriors and advocates continue to fight until we rid the world of ALS. While it may be too late for me, I pray that others won't have to endure the same pain and suffering.


ALS is a cruel disease that robs individuals of their abilities and loved ones of their cherished memories. My journey has been immense hardship and heartbreak, but I am determined to leave a legacy of resilience and advocacy. Let us work together to support those living with ALS, raise awareness, and ultimately find a cure so that no one else faces the same devastating path.


Please, #EndALS


I love you, Erika, Liam, and Bayler.

John 14:27

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.