A Note from the Founder: Seth’s Ten-Year ALS Update
On August 24th, 2010, at about this time of day, I was sitting in an exam room, receiving the biggest shock I've yet experienced. A doctor, who I had just met that day, had just told me he felt the most likely explanation for symptoms I had been experiencing for a year, and for the abnormalities he and a colleague had just seen in my exam, was ALS, a rare terminal illness. He explained that if this were the case, my life would likely end in the next 2-5 years. Dr. Smith shared more thoughts, none of which I recall, and stepped out to give me some time alone. Dazed and assuming the appointment was over, I left the clinic with my head swimming. Dr. Smith, upon finding his exam room empty, quickly reached me by phone to invite me to return the next day with Amy. And so, a new phase of my life began.
Those who know me well, know that I am terrible at remembering birthdays, anniversaries, or holidays. My saintly Mother says it is because I "live in the moment". For whatever reason, dates creep up and surprise me. That is not the case with today's date. I have mourned the unlikelihood that I would be with you today. I have been filled with determination. I have tried not to get my hopes up. I have counted down the years, the months, the weeks, and the days for ten years! WAHOOO!!! I am overwhelmed, humbled and incredibly grateful. I am grateful to be here with all of you and I thank God for the gifts of these ten years! Today I'm grateful, not just to be alive, but for the whole package. I am grateful for all of it, including the hard stuff.
My wife Amy and I have talked about how to celebrate this milestone. The pandemic spoiled my original plan to rent Aruba and fly us all there. Argh!!! So instead, to celebrate this anniversary, above anything else, I want to thank the people who have enabled me to be here and to be happy to be here
First, to my little family: We choose our spouses based on SO little information. I only saw a hint of who Amy really is before we were married… only a glimpse of her character and gifts. I could not have known, without experiencing these past ten years, what I am starting to learn about her capacity and willingness to sacrifice for me, our kids, and for everyone we know. I am humbled (and a little confused) that she continues to forgive and choose me. She is beauty personified. From her came four impossibly unique children who have followed their mother's example and spent these ten years with nobility, humor, and maturity that continues to shock me. They have taken the full weight of ALS, including the limitations of my increasing disability, and my multiple near-death experiences, in stride--all while growing up themselves. I could not know them like I do without these ten years. They have unlimited potential. Amy, kids, thank you.
Next, to our extended family: No one suffers or sacrifices more for us than you. Sometimes you suffer more on our behalf than we do ourselves! We do not know what to do about this, but we thank you.
Last, to my EXTENDED family… All ya'all: Your faces flip through my mind. Living with a terminal condition makes us hungry for a clearer picture of who we are, what we want out of life, and what to expect afterwards. For these ten years (for some of you, 45 years) I have used you as my laboratory to test theories, find answers, and to seek further light. You have taught me so much without even knowing it. I have listened to what you say and watched how you live. One of the greatest lessons I learned from you is that hardship is everywhere. Everyone suffers, some of you far greater than I have. You have also proven, through your kindness and compassion, that we have the power to look beyond our own hardship, and to relieve others' suffering. Thank you.
Looking back, we see these ten years as our best yet. We have had experiences that would not have happened without that day in the exam room. We see a greater design to these experiences. In the words of my Danish ancestor, when speaking of the divine aid they saw in the fort they had just finished, "We builded better than we knew."
Please block your calendars for August 24-31, 2030. Aruba wasn't refundable and isn't available until then.
I love you all!