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This is my ALS: A Love Story. It is about my love, my rock, my wife, my partner-in-crime, and my Valentine, Lynne.
Lynne calls me her “freak of nature.” Who would ever think such a nickname could be such a term of endearment, and hold so much love? Hearing her say that makes me so proud to be her husband, her one and only freak of nature!
When we were diagnosed 13 years ago, I was in utter disbelief. “Shock” comes to mind. My biggest fear was to be a burden to my family and not wanting to rely on others. I hadn’t been eating, sleeping, or thinking clearly. I was merely existing.
Initially I was very angry about my diagnosis. As time went on, and my symptoms progressed, I had to increasingly rely upon others for most of my needs. Once I accepted that this was my fate, I began to see through different eyes! As I lived longer this acceptance turned into gratitude for those who were willing to help me – and that gratitude allowed me to have more empathy for those around me who willingly lived with me and my disease.
It took a while, but once I realized that those who stood by my side had “enlisted” and I was “drafted” in this war against ALS, all of my relationships took on a different meaning. Especially my relationship with Lynne. I now know about accepting help, relying on others, and being part of something greater than myself. This is the gift that my ALS has given me. It has allowed me to be a better friend, father and husband to Lynne.
Lynne’s role has morphed over the time of our ALS. When I was first diagnosed, Lynne took it upon herself to stay one step ahead of the disease and make sure things that I needed were in place before I actually needed them. This allowed me to stay focused on “Augie’s Quest” and raising funds to support the ALS TDI.
When I began to lose my ability to speak, Lynne started helping me out at our presentations around the country. Since completely losing my ability to speak, she is now my voice. More accurately, she has found her own voice. Lynne has never faltered in being by my side and supporting me. Our marriage has strengthened and our trust in one another has never been stronger. Today, I feel fortunate to know what unconditional love feels like, to have a love worth fighting for and one that would be a shame to lose.
There’s real joy in looking at the life Lynne and I have built together despite ALS. It’s also amazing to watch how lucky we’ve been in this disease, after 13 years, all that has happened. Seeing so much unfold that we never thought possible with a diagnosis of ALS – we’ve just celebrated the birth of our eighth grandchild. When we were first diagnosed, we believed those life moments would never happen. It’s the best gift.
It is Lynne and my hope that by putting our story out there, we can touch others who are going through difficult times, raise awareness and critical funding for effective treatments and an ultimate cure for ALS.
And this special Valentine’s Day, we thank each of our Augie’s Quest friends and ALS champions for sharing their unique ALS: A Love Story moments of love, too. In this ALS battle, we’ll take all the love, passion and fight we can get!
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 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.
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/
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 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.
This is my ALS: A Love Story. It’s about my husband, David.
“Love is patient…”
Hmm. The poet of that popular wedding reading probably wasn’t envisioning a husband waiting at a porta-potty at Mile 14 during every one of his wife’s five marathons to help her in and out of her trike. But that’s what our love looks like.
“In sickness and in health…”
We couldn’t have imagined 8+ years ago that those lines of our wedding vows would one day rule every single decision we make. ALS has meant giving up on children and moving away from a city we loved. It ended my career and has shaped his.
“Til death do we part…”
Ah, yes. When I was diagnosed with ALS in May 2014, I worried that I would never have another purely joyful moment. Instead, happy memories are sweeter and laughter is easier to come by. We don’t wait to do the things we want in life now because we know that tomorrow isn’t guaranteed. It isn’t even expected.
Somehow, we managed to nail the reading at our own wedding, a poem by Lloyd Lee Wilson: “Slowly we learn that we are all broken, all less than perfect, and that God loves us, each one, wonderfully even so. Slowly we learn that the real love for one another we crave is not the ideal love of my personal façade for your façade, but the imperfect intent to love that my flawed self can offer the real you.”
Because that’s what our love looks like.
This is my ALS: A Love Story. It’s about my wife, Missy.
Missy and I first met in 10th grade Advanced English class. I emphasized advanced because there was obviously a mistake in putting me there. I was not a particularly good student, school was a bore and I mostly enjoyed making people laugh and getting in trouble. She was quiet and beautiful, I was loud and obnoxious. Let’s just say for her it wasn’t love at first sight and it took a few years for me to wear her down with my brash wit. We became good friends towards the end of our Senior year. I knew right away I was going to marry her one day. We started dating our first year in college and have been by each other’s side since.
We dated for eight years and got married in 2003. We moved out of the city, had two beautiful girls and life was perfect. In 2010 we uprooted our life in New Jersey to live a slower, more simple life in Austin, Texas. Those first three years were what dreams are made of. We had the perfect little tribe. The four of us did everything together. Exploring our new city, camping, boating together every weekend, and making new friends. It really couldn’t have gotten any better, well except if my bald spot started miraculously filling in with thick Fabio-like hair.
In the fall of 2013 I started having trouble with my words. I thought it was stress, Missy thought I was drinking at the office too much (drinking beer at work is kind of a thing in Austin), and the kids thought daddy was just tired. While I was probably all of those things, it wasn’t the reason for my declining speech. I had ALS.
The years since have not been easy. Missy has pretty much learned how to be a nurse, single mom, and operate on very little sleep, all while working full time to support the family and my growing needs. This is no small feat. The kids have had to get used to Dad talking through a computer and not being able to do things that other dads do. Through it all we’ve been able to create somewhat of an ordinary life through an extraordinary situation. I’m not sure love is the cure, but the unwavering love from my three Valentines is certainly the reason I’m able to live a remarkable existence, despite my physical limitations.
This is my ALS: A Love Story. It’s about my husband, Don.
Don and I were sitting in his parked car one bleak March afternoon in 2002, crying our eyes out and discussing matters no newly engaged couple should ever have to contemplate. You see, earlier that day, I received a diagnosis of ALS in my neurologist’s office and was given three to five years to live. Out of my deep love for him, and after witnessing what my own mother had been through with the disease, I tried to break things off. I wanted to spare him the unending challenges I knew were coming. He wouldn’t have it. His exact words to me were, “Whatever time you have left on this earth, I’m going to spend with you.” We were married that August, and we’ve been together ever since. We are each other’s best friend and source of strength, and we are abundantly blessed.
