Monday, August 24, 2020

Celebrating 10 years of life with ALS

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'd just met that day, had just told me the most likely explanation for symptoms I'd been having for a year, and for the abnormalities he and a colleague had just witnessed in my exam, was ALS, a rare terminal illness. If this were the case, my life would likely end in 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 life began. 

 

Those who know me well, know I'm terrible (competitively bad) at remembering birthdays, anniversaries, or holidays. My saintly Mother says it's because I "live in the moment". For whatever reason, dates creep up and surprise me. That's not the case with today's date. I've been mourning the unlikelihood, and then being determined, and then trying not to get my hopes up, and then counting down years, months, weeks, and days, that I'd be with you to see today's date… for TEN YEARS. WAAAHHHHOOOOOO!!!!!!!! I'm overwhelmed. Humbled. Grateful. Grateful. GRATEFUL to be here with you. I thank God for the gifts of these ten years! Today I'm grateful not just to be alive, but for the WHOLE package… All of it… Including the hard stuff.

 

Amy and I talked about how to celebrate this milestone. The pandemic spoiled my plan to rent Aruba and fly us all there. Argh!!! So, to celebrate today, before anything else, I want to thank the people who've 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 had only a hint of who Amy really is before we were married… only a glimpse of her character and gifts. I could not know, without experiencing these past ten years, what I'm starting to know about her capacity and willingness to sacrifice for me, our kids, and for everyone we know. I'm 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've followed their mother's example and spent these ten years nobly, with humor, and with maturity that shocks me. They've taken the full weight of ALS, including the limitations of my increasing disability, and 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 don't know what to do about this :-). 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've used you as my laboratory to test theories, find answers, and to seek further light. You've taught me so much without even knowing it. I've 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've 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've had experiences that would not have happened without that day in the exam room. We see a greater design in these experiences. In the words of my Danish ancestor, speaking of the Divine assistance they saw in the fort they'd 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.

 

More to come!

 

Love! 

Seth


   August 25th 2010


July 2020