Six Years of ALS: Accomplishments, Heartache, and the Power of Support



Introduction:

Today marks the sixth anniversary of my ALS diagnosis, a milestone that triggers a mixture of emotions within me. As I look back on these past years, it's hard to believe how much changed since that fateful day when my life took an unexpected turn. In this blog post, I want to share my journey- the challenges I faced and the lessons I've learned.

A Cruising Start:

It all began almost nine years ago during a cruise with my then-girlfriend, now wife of seven years, Erika. The symptoms of ALS manifested themselves, casting a shadow over what was supposed to be a carefree and joyful time. Little did I know then that this cruise would mark a life-altering battle that continues to the present.

Living with ALS:

Living with ALS has encompassed a significant portion of my existence. For a quarter of my life, I have faced the daily challenges and uncertainties brought about by this relentless disease. My wife, Erika, has been my unwavering caregiver, demonstrating love and support beyond measure. Our relationship has evolved in the face of adversity, strengthening our bond and teaching us the true meaning of commitment.

Impact on My Family:

My two sons have grown up knowing only their father with ALS. The inability to engage in meaningful conversations with them has been a painful reality. The weight of missed opportunities and unfulfilled experiences often weighs heavily on my heart. Nevertheless, I strive to be present in their lives, to offer them the love and guidance they deserve, even if it takes unconventional forms.

The Long Road to Diagnosis:

Like many others in the ALS community, my journey to diagnosis was arduous and filled with frustration. It took three long years of searching for answers before finally receiving confirmation. Sadly, this delay meant missing valuable time for FDA-approved treatments and experimental drug trials that could have potentially improved my condition.

Regrets and Lessons:

Hindsight is a great teacher, and if I look back, I carry regrets. My greatest regret lies in not banking my voice before it was compromised. Losing my voice; felt like losing a part of my identity, a unique connection to my loved ones. Additionally, the delayed diagnosis hindered my early involvement in ALS advocacy. I wish I had documented more of my early symptoms and struggles, shedding light on the realities of this disease and advocating for awareness and support.

Accomplishments and Tragedies:

Six years of living with a terminal illness is undoubtedly an extraordinary accomplishment. While ALS has taken away my ability to move and perform basic tasks, it has granted me invaluable insights and experiences. The outpouring of love and support from friends, family, and strangers has been humbling. But along with the accomplishments, there have been heartaches and tragedies that have shaped my perspective and strengthened my resilience.

Conclusion:

As I commemorate the sixth anniversary of my ALS diagnosis, I find myself on complex emotional terrain. It has been a journey of immense challenges, also a testament to the human spirit's capacity for love and endurance. I hope that by sharing my story, I can raise awareness about ALS, encourage early diagnosis, and inspire others to advocate for themselves and their loved ones. While ALS has taken so much from me, it has also shown me the profound depth of compassion and resilience within the human spirit.

 






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