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.
This is my ALS: A Love Story. It is about my wife, Ali.
On May 17, 2016, as Ali and I were stuck in traffic heading to the neurologist I asked, “If we get bad news today, can we stop at the first bar we see?”
Ali said, “I’ve been waiting for you to ask me that.” To which I responded, “Well?” And then Ali, in the kindest of ways told me, “Boomer, that would be quitting.”
But later on that day in May, some four hours after that initial conversation. Ali and I were crying pretty good, stuck in traffic. (I mean, the doctor broke our hearts, but the traffic was killing us!). I turned to her and asked, “Does this mean you won’t marry me?” Ali turned weeping to me and said, “It only makes me want to marry you more, let’s go to the courthouse in the morning.”
It takes one hell of woman to sign up for this. As a friend said then, which may or may not be true, “You’ll get her best years, and she’ll get your worst.” One thing is very likely to be true, I’ll make her a widow much too soon.
We were engaged 45 days later. And married nearly one year ago.
I just can’t express enough my love and appreciation for Ali. I don’t have the words. For those of you that don’t know, Ali was my High School sweetheart. I spent the best year of my life dating her. We screwed it up in college and found our way back to each other in our early 40s.
We promised each other the next 40 years. We wouldn’t screw up the second chance, the next 40 years were ours, together. We planned and dreamed about our life together and the adventures and happiness to come.
Then it happens. Your squash game falls apart and you start twitching. Falling for no reason. Unable to bend your legs. Can’t sleep, although exhausted. Bad back, must be. But things aren’t right, and the doctor tells you have ALS. “No treatment, no cure and 50% of patients die within 2 years. Get your affairs in order.” Dreams of 40 joyful years together blown up in 2 sentences. Boom. Done. Over.
In my opinion, that’s not the real tragedy. Not the two to four years of physical suffering and mental anguish that comes with this disease. It’s the time I won’t get to spend with Ali. I think it’s worse for her. All she can do is watch and help and comfort. I have the relief of death, she has the pain of living.
She was right, Ali, on that day in May.
Because I’ve lived, laughed and loved so much in the last year. I’m glad, too, that my children won’t remember me in a wheelchair feeling sorry for myself.
Instead, they’ll think of me in moments like last night…the moments to live for, with green hair, celebrating my beloved Philadelphia Eagles at the Super Bowl. And that’s just one of many amazing, once-in-a lifetime moments, I’ve spent with Ali.
This is my “ALS: A Love Story.” It’s about my family, my Galentines.
I was diagnosed with ALS in April of 2017. My wife and I will have been married 14 years this coming May.
When your last name is GALENTINE – “Just like Valentine but with a G”- Valentine’s Day becomes Galentine’s Day. It’s the one day of the year that most people pronounce my last name right!
I have been a songwriter in Nashville for nearly 25 years. I go by “Bryan Wayne” in the music world. It is only fitting that I met the love of my life because of a song I wrote.
I had written a song with my bud Big Kenny (Big & Rich) and neither one of us had anything major happening in our careers yet so we were both short on $$$. A friend suggested we record with a guy who had a little home studio in his townhouse. It just so happened that his platonic roommate was my future wife.
And even crazier, the very first day I met her she was home from work sick! So one of my best days was literally a day when she was at her worst.
The song was called “Fly” and it’s all about chasing dreams, appreciating every moment, living life to the fullest, etc. Thankfully it wasn’t a song about pickup trucks, drinking, and partying in a field. We ended up giving out CDs of the song as a gift on our wedding day. And I have recorded new version of the song for an upcoming record I’m working on, where I’m putting MY vocals on songs I’ve written over the years, in the event that ALS unfortunately takes away my ability to speak, and sing.
I am coming up on one year since my diagnosis. And I won’t lie, it’s terrifying. I know the road ahead is not going to be easy. Barring a cure, I know the odds are not in my favor that I will live to see my sons graduate high school, let alone college.
But ALS has taught me to try my best, to not take a single second for granted. Some days it’s easier said than done, but I’m trying.
And it’s taught me to better appreciate my wife, my sons, my family, my friends, and life in general. I wish I had gotten that wake-up call some other way, but if it took getting ALS to wake me up, so be it.
I have decided instead of being angry and bitter about my diagnosis, I am going to take this opportunity to remind my friends and family how fleeting life is, and how important it is to appreciate every second.
This is my “ALS: A Love Story.” It’s about my husband, Matt Bellina.
I first me Matt in August of 2002 when we were both Virginia Tech. Matt thought I was a “drunk college girl” (I was not) and gave me dead flowers out of a dumpster. I couldn’t remember his name I was so flustered by this cute boy that I referred to him as “the hot one” for a week until we met up again.
Funny to think that’s how we started. Now, we have been in each other’s lives for over 15 years. Matt was officially diagnosed with ALS in April of 2014, so our family is coming up on four years of living with the disease.
Our life with ALS is made a little bit easier because of Matt’s inability to accept his diagnosis as a roadblock. He is very much in this fight, and mostly for others dealing with terminal illnesses, ALS and otherwise. Of course, his humor shines through most, lifting us all up when things don’t go according to plan in our day-to-day life. With ALS, that can happen quite a bit.
Before our diagnosis – Matt surprised me one night by having a friend drive him from campus to my townhouse. He crept under my window and started playing his harmonica until I came outside. And now, after our diagnosis – I have so many moments I cherish with Matt. Like when I come downstairs from putting Pax, our youngest son, to bed and see him cuddled up with our older boys, JP and Kip, reading a bedtime book, or discussing the day, or talking about God. It’s those times where Matt is just being a good dad to our boys, that really get me.
Matt is my heart. I do most everything in my life with his voice in the back of my head. If it’s something I know he wouldn’t be proud of, I know it’s not a good idea. I appreciate his understanding. I am not the easiest person to live with, but he sticks with me. He puts up with my moods and frustrations and still loves me, through it all.
On our first Valentine’s Day together, we promised not to get each other anything. I stayed true to that pact, and got him nothing. He made me a handmade card (I still have it), a giant balloon stuffed with fun things, and other trinkets. I looked like a chump. Let’s just say he’s the romantic in the family!
When it comes to ALS, everything in life becomes weird. Things you never thought you would do, are now every day occurrences. You have to laugh. and love. You have to love and grow together through it all, or you are going to fall apart. And for us, to live with this disease, that falling apart simply wasn’t an option.
Here at Augie’s Quest, we’re gearing up for a heart-filled month – with many of our ALS champions offering up a little of their love for the cause.
We’ve themed February, “ALS: ALove Story.” Starting today, we’ll feature one “ALS: A Love Story” story across Augie’s Quest’s website, social media and email list – culminating with a new twist on Augie and Lynne’s story on Augie’s 60th birthday, February 15.
We’re focused on sharing our many ALS stories of love – moments of hope, support and comfort via friendships, marriages, family, caregivers, kids, grandkids, and of course, pets. We know these love stories are out there, despite this horrible disease – and felt it the perfect time of year to share that love with our entire community. And in doing so, together, we can help raise a little awareness and interest in this other side of ALS, one that we don’t often hear as much about.
Be sure to follow along on our social channels, share the stories with your personal networks, and get to know some awesome love stories from Boomer, Caitlin, Evan, Catherine, Bryan, Stacie and more.
And, we know many of you likely have your very own personal stories and experiences with love despite ALS, or in some cases because of ALS. Please join in and share yours, too!
So, will you join us in celebrating love this month?
Join us and take the #ALSPepperChallenge, because ALS is not an incurable disease, only an underfunded one – so support the Haberstrohs, Augie’s Quest, and ALS TDI!
“ALS isn’t an incurable disease; it is an underfunded one. This is a message you’ve heard Lynne and I share countless times, and one that drives our passion and tireless work for this cause.
Yet, never has it been more pressing, as we now have a promising drug on the near horizon that could slow the progression of the disease. The only thing standing in our way — the urgent funds needed to drive this, and other potential treatments and cures, across the finish line and into the marketplace to benefit so many people living with ALS today.
If you’ve ever wondered what our daily quest to #EndALS looks like, whether in the ALS Therapy Development Institute lab or behind the scenes of our innovative approach to ALS, we captured that story of our progress in a brief, easy-to-digest (and dare I say, “hip & fun”) explainer video.
Check it out!
We asked Natalie Morales, of NBC/Access Hollywood and our 2017 Champion for ALS Award Winner to lend her signature voice to the piece and Natalie graciously agreed, delivering a passionate and informed message about our cause. You’ll quickly see how we put every donation to work and why every gift is so important to our life-changing research.
Please share this video on your social channels and let your family, friends and colleagues know what is possible when you give to Augie’s Quest to Cure ALS.”
