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Howdy!
I’m honored to be writing y’all this month for Augie’s Quest. I vividly remember the first time I heard about Augie. It was a morning in late 2013 and I was getting ready for work. From the bathroom I could hear my wife crying. She called for me to come watch the Today Show where they were doing a story on Augie. I thought to myself, “that’s one resilient dude”, and I went on with my day.
Little did I know that just six months later, at the age of 36, I would be diagnosed with the same disease. I was the picture of health (ok besides my affinity for craft beer), ran my own music technology company, married to my high school sweetheart, and had two young daughters whom I adored. Now facing a diagnosis with an eighteen month life expectancy my doctor told me to get my affairs in order, like anyone knows what that even really means?
Almost four years later I sit here typing to you with my eyes, completely paralyzed while my nurse pours my lunch through a tube in my stomach. Even as I type that it sounds surreal. Despite my condition I’m busier than I’ve ever been. I’ve started a second career as a writer, both to raise awareness for ALS through my blog and for the Huffington Post, and as a fiction writer. I’m developing technology to enable people with disabilities more freedom, and raising two incredible kids.
ALS has taken a lot from me, too much to even begin to list. But it’s also given me a lot to live for. I look forward to watching my girls go off to college, to celebrate my 25th wedding anniversary, and to see the day where ALS isn’t a devastating terminal illness. I know that I’ll be around to see that day and I’ll spend every minute leading up to it trying to make the world a better place.
I don’t believe everything happens for a reason, things just happen and how you respond creates meaning. I do know that seeing Augie on TV that day left a profound impact on me. It showed me how perseverance, determination, and hope can prevail over whatever you’re facing. It also showed me that leading by example is the most important thing I could do, and I haven’t looked back since.
-Jay Smith
This is my ALS: A Love Story. It’s about a boy with blue eyes, and two kids.
Our love story begins in Alaska. Ketchikan, Alaska. It’s a small island in Southeast Alaska and our claim to fame is we receive 13 feet, not inches, of rain a year. When the sun is out, and shining on the water, there is no better place to be!
It was on one of those sunny days, that I met my “boy” Patrick Ford Dwyer, on the back deck of a boat, in June 1985. The boat was owned by a friend of my mom’s. He called and asked if me or my sister Mary, both boat cooks, were available to cook on his salmon tender boat for the summer. My mom said I was. She hung up the phone and suggested I head out to the boat and talk about working for the summer. (When mom “suggests,” you do!)
So off I went. I met with the Captain, and then ran into the already hired crew. I laid eyes on Pat, his blue twinkling eyes drew me in, and well, that was that. We had a really fabulous summer working together on the boat. Then, Pat asked me to come to visit him in Seattle.
I may or may not have gone down to Seattle, under the guise of living with my sister Mary and looking for work! Six months later we were engaged. Six months later we bought our first boat. Six months after that, we were married. Husband and wife. Until death do us part.
We were together for 28 years; married for 26.5. During that time, we raised a family, built a business, and created a community of the best family and friends one could ever hope for. As husband and wife, we encountered many huge, life-changing events together. We lost our first boat. I fought cancer for three years. We suffered the devastating loss of good friends and family.
But, through it all we were sustained by that “love at first sight” love. But the life events that sustained us the most were the births of our beautiful children, Brenna and Sean. They were our “loves at first sight.”
In June of 2005, life hit us with a disease called ALS. My “boy,” my blue-eyed boy Pat was diagnosed with ALS. It came marching into our lives without a care in the world, and we had no idea what was about to pummel us. But what we did know was that we had the love to see it though, however that would be.
Husband and wife. Until death do us part.
It’s been 4.5 years since Pat passed away from his ALS. Pat loved life. He loved every single thing about it. He loved making deals, he loved arguing, umm, well let’s call it “debating!” He loved dancing, playing “drums” on the steering wheel while he was driving, and singing along to the radio. He loved laughing, and telling stories, and telling us all what to do!
But mostly he loved his children. He loved them loudly with his laughing, his stories, his “debating,” his blue twinkling eyes, his smile, and his favorite way, telling them what to do, ummm, let’s say “guiding them!”
I miss him. But Pat would be the first one to say, “live life!” So, onward I go.
ALS, even though Pat is gone, you didn’t win because my ALS: A Love Story is about a blue eyed boy, who gave to me the two greatest gifts in the whole wide world…Brenna and Sean Dwyer. When I am weak, they are strong, just like their father was in every way. ALS, you didn’t win because Pat’s love will continue with our children’s love stories.
Thanks for all the love, Pat.
#PFD #414 #Onward
This is my ALS: A Love Story. It is about Hallie.
My love can only be for my partner and best friend Hallie.
As the saying goes, no one signs up for this, but she has been a rock through the intense adversity that is ALS. We have been together for 23 years, but through this experience our love has only deepened.
I try and find the words to thank her, but it is so difficult. What do you say to a person who sacrifices so much for you? When times are tough, I only want her. She is my security blanket.
My only hope is that someday I get better and I can begin to pay her back. As the song goes, “Did you ever know that you’re my hero?” I say that to her all the time. My beautiful hero, Hallie.
This is my ALS: A Love Story. It’s about my wife, Cara.
Cara and I met in 2002. Before we had kids, I dragged her on all sorts of crazy trips. Regular jaunts to Mexico, Nicaragua, Argentina, Europe… Small towns, hostels, huts on the beach, chicken buses, the works.
We got married in 2006 and knew we would have a lifetime of adventures ahead of us. I finally finished grad school and we moved to Columbia, SC to start our family. Mary Adair and James were born and a new chapter began. Then I somehow managed to get diagnosed with ALS in 2013. Cara was with me in the doctor’s office when we got the news. The diagnosis is hers as much as it is mine.
She pushes our family forward in spite of everything that ALS entails. We find new ways for the four of us to have adventures. For now, it means finding ones that are wheelchair accessible. Even that will change in the near future. We moved to Atlanta so we were somewhere where she would always have career options. We got season tickets to Atlanta United so the four of us had something else special to share. She found us a Disney cruise on to go on, and then jumped at the chance to tack on a US national team game on one end. One of the unexpected pleasures of these adventures is us for staying in the same room. Even if it means lights out at eight, waking up altogether is a special piece of the experience.
But in many ways, these discrete adventures are the easy part. You do your best to plan ahead and then roll the dice hoping that things work out. The hard part is the day-to-day. The physical workload that comes with one spouse being physically incapacitated. The mental stress of plotting a career and planning for your family’s future when you know how difficult the coming years will be. Knowing what the four of us will go through. Whether my progression continues to be steady but slow, or if it changes, the next five or 10 years will be impossibly difficult for each of us. She is no superhero. Nothing about this is easy or is something she is naturally programmed to do. She just does it. That is what’s required for our family. That is what it takes for us to still be focused on our little adventures.
When we were dating and she was in Boston and I was in North Carolina, we relished the idea of finally being in the same place and having simple moments on the couch. ALS is not easy on any of us. It is not fair. It only gets harder from here. But I still cherish those times. The moments to ourselves. I cherish our partnership. I cherish our relationship.
And through it all, through trips, through kids, through moves, through ALS, through adventures, she is my wife. I love her more and more each day.
This is my ALS: A Love Story. It’s about my mom, Lynda Warren.
The hardest part of my mom having ALS was knowing that she had planned to spend her retirement chasing her grandkids. She was diagnosed two weeks before her oldest two graduated from high school. She was able to see that, be a part of that celebration, but then it all seemed to progress so quickly.
Within two months she was confined to her bed or her (uncomfortable) wheelchair.
I was sad and felt cheated — for her and her grandkids, her greatest joy.
But then, we all decided we wouldn’t give our final days to ALS. We would LOVE every day. By doing so, our family would WIN.
If love alone could cure ALS, no one else would ever have to suffer its cruelty. But if we love deeply and freely, we take away the power of ALS and instead let it empower us.
This is our ALS: A Love Story. It’s about us, my husband, O.J. And, it’s about my wife, Chanda.
From Chanda:
O.J. and I met in 1989; we married five years later. We love to laugh and have our inside jokes as husband and wife.
When I first went to visit him in Canada, he was playing for the BC Lions. To this day, that song — (I’ve Had) The Time of My Life – still plays in my mind when I think of that trip, and it continues to be “our song!” Canada was so beautiful. Never mind that he picked me up at the airport with the gas tank on “E” – we were literally on fumes. It was snowing and cold, but he was determined to get back across the Canadian border to get gas for the car. We had no money, we did nothing exciting on that trip, but it was still one of the very best trips together we have ever taken.
To this day, O.J. puts up with me. He lets me be me, whether he agrees with me or not. And he’s OK with that. He always has my back.
O.J. bought me a stuffed monkey last year that dances and it is my absolute favorite Valentine’s gift – it’s my favorite gift ever. It plays Bruno Mars’ Locked Out of Heaven and I’m going to get it out for every Valentine’s Day because I love it that much.
ALS has not stopped the love for us. Love is still love. It doesn’t stop our marriage, from honoring our vows, it also doesn’t stop us from disagreeing! It doesn’t stop us from being married, ALS or not, we are husband and wife.
From O.J.:
Knowing that our love is … being committed to each other regardless of whether we feel like it, helps me out immensely! To know that Chanda has my back gives me the courage to fight to make the most out of every day. Her strength is incredible.
There are always those little moments when we notice something at the same time, look at each other and just bust out laughing! The little inside jokes bring levity to daily life.
Though ALS has taken so much from us physically, the bond between Chanda and me is still strong because God is in the center of our marriage. That is what keeps us going day to day.
O.J. and Chanda Brigance are Co-Founders of the Brigance Brigade Foundation. Their mission is to equip, encourage, and empower people living with ALS and their families. Brigance Brigade Foundation compliments what other ALS organizations are doing, providing funding for medical equipment and respite care not covered by other resources. Its 5th Annual 5.7K Championship Event is Sunday, April 29th and there are virtual participation options – If you’re reading this, they challenge YOU to participate in the 5.7K Championship Event and support the Brigance Brigade Foundation’s fight against ALS.
www.brigancebrigade.org
www.facebook.com/brigancebrigade
Like a lot of busy moms, I was never much of a “plopper.” There was always something I needed to do, somewhere to go, somebody who needed something. What I needed was more hours in the day!
In 2015, I was diagnosed with ALS. Among many emotions and fears that surfaced, one of the most difficult for me involved our family’s annual one-week trip to a rustic camp in California’s beautiful Trinity Alps. I have 35 years of memories of my sons swimming in the river, rafting, playing horseshoes, cards, and ping pong, riding bikes and sitting around the campfire, performing in the “talent” show, and all the special bonds that come from a week in the woods with family and dear friends.
At first, I wondered if I could go at all. I hated the thought of being a burden, or getting in the way of the fun. My husband, Paul, and my boys Marc, Luc, and Dan immediately responded: not going is not an option. They figured out what I might need. Paul arranged for me to have an ATV so I could move around camp with confidence. We brought some special grab bars for our cabin and simple ramps so I wouldn’t have to worry about stairs. They then all did that thing that cannot be easily described: They paid attention, and they made anything that was difficult for me easier by just lending a kind hand.
But last year one cherished Trinity activity looked like it was heading for my “unlikely” list: There is a wonderful swimming hole where several families who come every year for the same week, bring the largest flotation crafts they can find (last year’s biggest was 16’ X 10’ with built-in loungers and ice chest). When the sun starts to dip every afternoon, a group of us moms launch a floating cocktail party. We call it “party island.” It’s an hour or two of sun, friends, laughs, and no worries. It’s the definition of a simple pleasure. But it involves, for a person with ALS, a not-so-simple climb down a steep gravel path and then rocky walk to the water, and then boarding the giant raft with some degree of . . . well, I’m not sure “grace” describes even the most able-bodied person’s boarding style. And last summer, that was not me, and did I mention there were at least a couple of dozen people lounging on the shore watching all this?
Undeterred, my husband and sons decided I was not going to miss out. I swallowed all pride and let the boys carry me down the rocky hill and across the beach, and then they plopped me on the inflatable island. Post-plop, I was exactly where I wanted to be: floating with cherished girlfriends, remembering and laughing at all the memories of chasing toddlers around the shallows, worrying about sunscreen and naps and poison oak.
Now, my grown young men are taking care of me. It’s not easy. But what a circle. What a life. What a lucky mom I am to have my three sons, my husband, and an army of loving, supportive friends and family who make sure I continue to enjoy the life I so love, even with ALS.
As Mothers Day approaches, I feel so much gratitude for my sons, my family, and my life. I have learned that sometimes the secret to a special burst of happiness can be to just give in . . . and plop.
– Nancy Sallaberry
Dear Friends,
This month I am honored to write you this email on behalf of the Augie’s Quest Leadership Council. I am a husband, a veteran, a father of three small boys, and in April of 2014 I was diagnosed with ALS. I was only 30 years old.
I mentioned in my introduction that I am a veteran because it is extremely relevant in the battle against ALS. Numerous studies have indicated that military veterans are at least two times more likely to develop ALS, than their civilian counterparts. While we still don’t understand the reason for the higher prevalence among service members and veterans, the cost and toll ALS takes — especially among this community — is devastating. For example,
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Since 2001, more veterans have been casualties of ALS, diagnosed with the disease, than overall casualties from the wars in Iraq and Afghanistan combined.
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The cost in ALS care to the U.S. taxpayers reaches nearly $450 million annually. The cost to the children, spouses and friends of those affected by ALS cannot be quantified in dollars and cents.
