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

Missions (Part I)

Prologue / Disclaimer 

I've never felt comfortable writing history, personal or otherwise. Even my personal journals are filled more with my thoughts than my experiences. Part of this is due to my discomfort drawing attention to myself.  I feel egocentric stating how anything came to be or happened when, undoubtedly, those who experienced these events along with me had their own perspective. I also feel somehow dishonest because I know it's impossible to capture events accurately. No matter how detailed and thorough I am, words are unable to convey the context and full depth, breadth, and texture of what I actually experience. Lastly, I'm biased by my personal preference to read people's thoughts rather than their experiences (since they're limited in the same ways I've mentioned above!)

All this said, I have a overwhelming desire for my kids to know themselves, to feel connected to the lives and experiences that went into theirs, and to be liberated and empowered in the process. Part of this is knowing the stories that have shaped me. I write these type of posts for them. Here goes!

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Missions (Post I) 

Last August our son, Sam, began his service as a missionary for The Church of Jesus Christ of Latter-day Saints. He was assigned to central Mexico, and, after six weeks of training in Spanish and how to teach the gospel, served there for nearly seven months before the Church brought all non-native missionaries home from Mexico (and, most other countries) due to the Covid19 pandemic. He's been home for three months, has been reassigned to serve in Orlando Florida, and departs in six days. I'm thrilled for him to return to missionary service and also for him to have this variety of experiences. Sam's impending departure has me thinking a lot about religion and mission experiences.

I'm a life-long member of the Church of Jesus Christ of Latter-day Saints. I was born into it. So was my dad. In fact, some of my people on my dad's side joined the Church a far back as the 1830's. These folks experienced social and governmental persecution in Illinois and Missouri, including the murder of Joseph Smith, before walking West to the Rocky Mountains pushing handcarts. More of my people on my dad's side met early Church missionaries in Denmark, Norway, and Sweden, joined the Church in the 1850's, and either became missionaries themselves or emigrated to Utah. My people on my mom's side are mainly Swedish, Irish, and German who immigrated to the US for reasons other than religion, and settled in the Midwest.

My family tree. 

My mom was raised devoutly Catholic, but began a search for spiritual answers during her early 20's. After befriending Church members, she sought out Church missionaries to learn more, felt she'd found her answers, and joined the Church. She met my dad a few years later, they married, and, within ten years, added six kids to their family including me, the third lucky one.

Being raised as an "active" (practicing) member meant my upbringing was inseparable from the Church's belief in missionary service. For me and my siblings 'practicing' included daily scripture reading at the family breakfast table (my mom read to us no matter how responsive we were), at least one weekly activity with the Church's youth groups, frequent activities including camping and summer camp with my congregation's Boy Scout Troop (I'm an Eagle Scout), an hour of released time during my high school classes to attend youth seminary, and three hours of worship services each Sunday.

My dad served a mission a few years before he met my mom. He'd been assigned to serve the Spanish speaking people of Texas, Arizona, and New Mexico. Growing up, his service came up every I heard him speak Spanish. We'd be out running errands, be on vacation, or at his dental office. We'd meet a person who spoke English with a Spanish accent, or who didn't speak English at all. My dad was usually fairly quick to ask them a question in Spanish. The people's reaction always made me proud... They'd turn with surprise, and respond in rapid-fire Spanish. I knew from the interchange, warmth, and speed of the conversations that followed that my dad speaks excellent Spanish. These experiences always made us curious about his mission.  We'd ask, and he'd share stories from his mission years with us, including stories about breaking a horse and doing an engine swap in a Ford Model T. These stories became lore in our family and stoked my and my brothers desires to serve missions. When it came time, my brothers and I overlapped our missionary service in Ireland, Brazil, Arkansas, upstate New York, and Jamaica.

I remember first making my decision to serve a mission in a Sunday School class when I was 9 or 10 years old. The teacher explained that " you only have to make the decision to serve a mission one time", and asked who planned to serve a mission. That statement struck a chord with me, and I raised my hand. Although I'd pray for confirmation of my decision after that, I never had  to make the decision again. As I approached my 19th birthday, my congregation's leadership helped me complete the extensive application process which included interviews with my Bishop to make clear and confirm I believed the tenets of the Church and was committed to and living Church standards of conduct. It also included doctors and dental checkups to confirm physical health. Once my application was submitted, it took about two weeks to receive my assignment, or "mission call". Because the Church sends its missionaries all over the world, the anticipation of waiting for my call was real. The first sincere prayer I recall offering in association with of my missionary experience was one I offered that I'd be at peace with wherever in the world I was assigned. I can easily go back in my mind and re-experience the minutes when, standing in my parents' kitchen, I opened the call letter in front of family, friends, and neighbors . I can easily recall the emotion and a profound sense of peace and confirmation as I read aloud my assignment to serve in the Church's Arkansas, Little Rock Mission.

About two months after I opened my call, I entered the Missionary Training Center, or MTC, in Provo Utah.  My drove me to Provo that day. We made two stops: one to get my favorite meal--gas station corn dogs, and another at the park across the street from the MTC for my dad to give me a priesthood blessing. Before placing his hands on my head, I remember my dad asking me if there was anything I wanted him to include in that blessing. I don't recall entirely why, but likely because of my personal awareness (and temptation to pride myself) that people perceived me as a spiritual person, I remember that I asked my dad to bless me with humility. He gave me a beautiful blessing. We then went to the MTC, parked, checked in, and were ushered into a large meeting hall. After a brief speech from the MTC's President, none of which I remember, we said tearful goodbyes. Missionaries walked out one set of doors. Families walked out where they'd entered.

To Be Continued

Book review: Jude the Obscure

I just finished one of the least enjoyable books (audio book) I've ever completed. Jude the Obscure, by Thomas Hardy, was published as a serial series in magazines in the US and Europe in the late 1800's. It's the story of Jude Fawley, a young man of noble character but of poor birth, who has his hopes, faith, dreams, ideals, occupation, health, children, true love, and eventually his life, wrung from him. I hung on to the end of the book, waiting for resolution, but none came.

This book irks me. It makes me ask myself: What facet of human character places value on stories like this? Are we so basic that we're entertained by others unrequited suffering? Are we so hopeless that we find comfort in reading the story of others hopes failing? Do we somehow value them because we can't relate? Do we find it cathartic to allow these characters to suffer as our proxies? Do we need satyr or some thing to stir us from comfort? I am not comforted, nor can I relate or find it catharsis. Instead I'm... Frustrated... a bit worked up ... and even angry?!?

I've heard it before: "Great art stirs our emotions".  Ok. Great. Why would we lump together that which expands our minds and edifies us with that which discourages us and causes us to doubt that which is bigger than our limited view? Is there a place for suffering in art, including literature? YES! The greatest books on earth are those which address it head-on AND show us the way through. Hardy offers no such guidance. In fact, he chooses to extinguish the light of hope by using the words of pre-deliverance Job as Jude's last: "... Wherefore is light given to him that is in misery, and life unto the bitter in soul." (Job 3:20).

I'm encouraged to read most of the Audible review, that the book, "... incited such outrage that Hardy never wrote another novel. Jude the Obscure remains one of the most righteously angry and deeply radical works of the nineteenth century." I agree with the review but find no righteousness or even anger of this book. If he's referring to my anger, he may be onto something :-).

I choose hope. I choose faith. I believe light is coming. Have I suffered? Maybe not. Still, I can't recommend this book.

Posting again ... Thoughts on the writing process

6/7/2020

Hello?... Anyone home? Is this thing on??

After a 5+ year hiatus, I've felt prompted to be more open in sharing my views and experiences. I hope you find them worth reading.

Writing is difficult for me. It's the form of communication that allows and requires me to think the most. As I write, I have the luxury and burden of testing ideas on the page, and seeing whether I actually believe them or not. Whether by nature or nurture, I recognize I'm a little cynical, OCD, and vain. These character traits combine to make me believe very few of my initial thoughts, fuss over details, and worry about what you readers will think of me. I could try and blame the labor of writing on the fact that ten years of ALS has left me disabled and that I type using a retina-tracking computer, but that wouldn't be honest. Writing's ALWAYS been hard work for me. If anything, ALS has sped up my writing by giving me a sense of urgency, and making me slightly less willing to tolerate my own vanity.

This took me about an hour and a half to write:-)

6/9/2020 addition
Kym, you made me aware I'd written only about the difficulty of writing. I failed to express my love of this difficult process.

Writing, for the reasons written above, is very demanding for me. For these exact reasons, it's also sacred to me. It's how I discover truth.

Writing is the best tool I've found so far to force myself to think through, test, and refine / distill my perceptions into beliefs. It's not unusual for me to labor over a poem, essay, or talk / sermon for weeks (much longer in a couple examples), adding thoughts as they come, deleting or rewriting previously written sentences or reorganizing and reordering paragraphs, until the piece feels complete. It's these pieces that I can come back to and wonder at how the end product is so much bigger than I am. For these reasons, much of what I write, I write only for myself, and, secondarily,  for my kids to read if they wish to know me. I've felt prompted to be less insular though, so am reentering the blogessphere. I'm not sure if I'll get to the point where I'm comfortable enough to open social media accounts (see note above regarding my own vanity).

I've also had a handful of experiences in which the words have poured into my mind and out onto the page, already near completion, as rapidly as i could write them. I'd call this revelation, but hesitate because it's as likely to happen while writing work emails, or silly poems, as it is when ever writing sermons.  Maybe I need to expand my personal perceptions about what's revealed and what's not!