L-I-V-I-N’ with ALS
A wise man once told me that when you meet someone with ALS, you have met one person unlike any others with ALS (“PALS”). Meaning that although us PALS are connected through a three letter acronym and an urgent desire to find a cure, or at least a solution that would cease, or materially halt, the onset of further disease progression, all of our experiences are different. I start with this acknowledgment to level set that what I am sharing is my own personal experience and perspective. For those reading this who have limited exposure to ALS, this acknowledgement is also an encouragement to seek out other voices in the ALS community to better understand the myriad of perspectives and urgent attention needed to fight and live with this disease.
Personal Perspectives
In the frenzied aftermath of my initial diagnosis in August of 2024, we were blessed with an incredible network of friends and family who extended their own networks to connect us with an expert class of individuals and institutions in close proximity to ALS who provided us a better feel of what we were dealing with and how to manage our next steps. These conversations were uplifting and an acknowledgment that while fears can never be fully assuaged in the face of ALS, a willingness to fight can be emboldened and that an entire phalanx of community is out there to support you.
One of the most meaningful initial connections was an introduction to Carol Hamilton at ALS TDI. Carol, who has been described as a loved one’s “spirit guide through the ALS world” and “the Tiger Woods of ALS fundraising” generously spent 2+ hours with me on the phone. She is now my spirit guide, and the glue that connects so many people throughout the ALS network, including facilitating my introduction to Cory and Alex.
I learned an astounding amount from Carol during that initial call. The most important lesson/reminder that she reiterated repeatedly was that despite the reality and adversity associated with accepting an ALS diagnosis, one cannot forget there is still a lot of living to be done with the disease.
And just like that a critical lightbulb went off. Sometimes all it takes is a simple turn of phrase to invert the paradigm and shift or reaffirm one’s mindset. In my case, while I was already committed to attacking this with maximum gusto, I realized I had the option to LIVE with the disease and choose to be irrationally optimistic, and positive about learning to live long-term with this disease.
Much of this decision making and approach was obvious (at least) for me. I have young children. I have things I don’t want to miss and want to be here for. I am willing to accept an alternate physical reality in order to be here. I am also blessed to have resources and an incredible support system that makes this approach possible. Although I cannot control how future onset happens, I can acknowledge how fortunate I am to have had a relatively slow onset of symptoms to date. I can control how I react and accept things as they change with an intense motivation to evolve with the disease with gratitude.
To be clear, living with ALS is not all sunshine and rainbows. It does, in fact, suck. I am not thrilled about being on the indefinite PUP list as it relates to physically enjoying two of my main interests: golf and guitar. I really dislike the absence of the physicality required to engage in fatherhood as I had hoped. However, instead of anger and resentment, I have redirected those emotions and energy into identifying ways to engage with these pursuits in new ways. These pivots served as a critical stepping stone that paved the way for my involvement with the ALS 100.
As I have reflected on and experienced living with ALS and become more enmeshed with the ALS community, I knew I needed an outlet that combined my passions with the ability to bring awareness and fundraising to help the broader community.
Thankfully, my spirit guide had ideas regarding how I could be the most impactful. Carol’s thoughtfulness and creativity led to the introduction to Cory and Alex. After bonding with Cory and Alex over golf and eliminating ALS, I knew I was in the right place. A place where I can combine my love for golf and focus on living with ALS to make a difference to the broader ALS community through positivity, awareness and (serious) fundraising in the effort of finding a cure.
Call to Action
Living with ALS is hard and the unfortunate (and unacceptable) reality is that it is not an option for everyone. It requires 24/7 engagement, vigilance and maintenance even in the early innings. Living with ALS requires significant expenditures of time and resources for wellness activities and care. The later innings are generally extremely cost prohibitive even when accounting for health insurance (if required services are covered at all). The ALS community needs a solution now, and we need that solution in the form of treatment and therapy developments to cease the onset of progression and ultimately end the disease entirely.
Those of us living with ALS, and the caregivers who support us, are digging unbelievably deep every day to show up for ourselves and family, friends and coworkers. Can those reading this message dig deep within themselves this year and in ongoing years until this disease is eradicated? Can we set a new high bar for the sort of money we can raise and the awareness we can bring to end ALS?
I’m truly honored to be involved with the ALS 100. I believe we can do something truly special together that continues to build on the momentum that Cory and Alex have built. Let us challenge ourselves - as individuals and organizations - to truly move the needle to drive further therapy development.
I cannot wait to see what we do together.
-ZZ