“I was made to love you”

We met on the campus at the University of Alabama, dated a bit, and kept in touch after we parted ways.  We reconnected years later in Atlanta.  He joined my church in the morning, and we were engaged in the evening.  He asked me to marry him at a concert under the beautiful stars to one of our favorite artists singing… “I was made to love you.”  Our wedding was a fairy tale, and we will celebrate our 18^th wedding anniversary on February 15.  We are blessed with 5 children.

Kerry was diagnosed with ALS in July of 2015, and ALS has changed our lives tremendously. We don’t say “negatively” because we are truly blessed with a new community of friends to add on to our amazing existing family and friends.  ALS has brought our family closer together. We truly cherish each moment that we have.  We don’t look at how much the disease has robbed us from, but we make each millisecond count.  Our love endureth all things

My friend of six years needed my help and I ran to action with no hesitation. I took on the shared responsibility to help him take care of his mother who has ALS. Her name is Luz Hiraldo. She is 52 years old and she was diagnosed in 2017. You can say we’re cosmic friends. LOL. I help during the day with the sun and he rolls in with the moon. My love has grown over the years for her I see her as my mom. This disease has taken so much from so many, but love will win over this disease. Thank you, Luz, and love you…

-Ameer

“My dad, George, loved to run. He ran at twilight, when the chorus frogs sang in the wetland near our house. Sometimes he ran in the morning before work — alone or with friends. Never with music, and always outside. He told me that it was his prayer, his daily meditation. Dad taught me how to breathe when I ran. Slowly in and slowly out at an even tempo. He showed me how breath carries you down the trail, and can buoy you through discomfort and exhaustion.

Breath isn’t just life — it’s gratitude. Every inhale and exhale is a quiet hallelujah for your existence. When my dad could no longer run, he walked with forearm crutches. Each step required so much effort that his face would twist in a pained smile — exhausted from the effort, yet grateful to still be on the move. A year passed this way, before even those steps became too much. In the final months, when a hospital bed occupied the dining room and dad’s clothes swallowed his skeletal frame, he would spend hours on the back porch, eyes tracking the songbirds who congregated at his feeders. Especially then, my dad’s breath carried him through the day.

I write all of this to say that my dad was so much more than this disease or a number. He was a runner. He was a reporter and a writer whose bookshelves were lined with poetry anthologies and David McCullough. He was a deeply spiritual man who saw the beauty in every sunrise, every bird song, every beautifully ripe tomato in his garden. He showed me how to move through this world with such grace, even when the hand you’ve been dealt isn’t what you envisioned. George is everywhere to me. I feel his presence when I walk the dog at dawn and hear Cat Stevens’ “Morning Has Broken.” I think of him when I smell coffee and cinnamon and newsprint. I carry him with me, in each breath and step that I’ve been given.

-Laura

“My mother, Dianne, was diagnosed with ALS in July 2018. She has been in hospice at home for 2+ years and continues to defy all expectations. Her quality of life is currently very low (she is fully non-verbal and non-mobile), yet every person lucky enough to visit leaves feeling as if they’d been enveloped in a warm hug of unconditional love. That is her superpower. People gather around to celebrate her (in person and virtually) yet—even with this ALS reality—she still takes care of us.”

-Elizabeth

My dad was diagnosed with ALS in 1998 when I was six-years-old.  My strongest memories are from when he was sick, but I’ve learned great stories through family and friends.  My dad was the life of the party; handsome, stylish, athletic, always smiling.  I gotta admit, I love when people say they see him in me… I mean, it’s a total compliment haha!  I was only 13 when he passed away, but we squeezed many happy memories into those years and I know I’m the person I am today because of him.

My dad was a great coach.  My main sport growing up was competitive cheerleading and while he didn’t coach my team I was lucky to have his guidance and advice.  The sport required a lot of travel to competitions.  Looking back I’m not sure how my mom and dad pulled it off.  They are both superheroes.  Road trips, airport security, flights, hotels… all so much more challenging with an electric wheelchair and ALS.  My parents were thoughtful and extended many of those trips into family vacations.  I think they knew the years were limited and wanted my sister and I to have those experiences while he was with us.

Part of me feels lucky I was a naïve adolescent when my dad was sick.  I didn’t fully understand his prognosis.  But, lucky isn’t the right word.  Just because I was young it was still grueling.  No kid should be growing stronger while watching a parent get weaker.  It’s not fair and I do not want any more families to be affected.  We need a cure.

A month before my dad died he wrote me a letter I will cherish forever.  In the fall of eighth grade we were assigned a time capsule project.  We wrote a letter to our twelfth grade self and gathered letters from friends and family that would be sealed and remain in a vault until senior year of high school.  After he passed I thought about his letter every day.  He typed it on his laptop with a switch wedged between his thigh and chair.  Thank goodness technology has advanced since 2005.  His final sentence read in part, “I am so proud of you for so many things. I hope that during your high school years you took advantage of every opportunity to better yourself for your college years. Have fun and keep making me proud. I love you, dad.”

-Katie

1984, I went to a friend’s birthday party hosted by another mutual friend, it was my senior year in high school. I had known Meg since our freshman year through band. Meg’s mom always said, “Juan came to a birthday party and never left.” She’s right, it’s a party every day when you find your one. This has been most evident since my ALS diagnosis.

Meg has been at my side every step, every moment. We have four children, our three youngest are adopted. Imagine finding your forever family then finding out one parent has ALS.  It’s devastating. Why do I share this? Because love stories include more than the couple, but the whole family. Meg’s my one not because she loves me and I her, but because our love embraces more than just our hearts.

I am married to my high school sweetheart, but more importantly I am married and will spend the rest of my life with my one and only. I love you Meg, in this giant puzzle of life you are the first and last piece.

-Juan

If you were to ask me years ago why I would be fighting for ALS, I would have told you it is for my Dad who was diagnosed with ALS at the ripe age of 41. I would have told you I wanted to find the cure for my father, I wanted to end this disease to save my family, to save my hero, to give me a “normal life” I felt robbed of when I was 18.

My father was a man of very few words. He was stubborn (sorry mom but I think that’s where I get it). He was unbreakable, so we thought. He was not only the motivation behind my determination and competitive nature but showed me what it was like to live regardless of the hand he was dealt. He’s the “why” behind the races I’ve run, the money I’ve raised, the places I’ve traveled, to feel seen and heard in the ALS community, and two businesses I’ve started. Little did I know that years later, I would one day do all of this for everyone and anyone who has been affected by ALS.

We need a cure. This community is unstoppable, but we need a cure.

-Christina

We met online in January 2016 while living in different parts of California. After a couple of months of chatting, Eric took the plunge and got on a plane to fly down to Southern California, and it’s been great ever since! In November of 2016 Tavares moved up to Oakland and we finally had the chance to see each other all of the time instead of just on weekends. We adopted Bailey and Rocco in February 2018 to complete our family. We took a trip to Hawaii in April 2019 and Eric popped the question while watching the sunset on the beach. We’re so excited to spend the rest of our lives together.

As a child, I had a picture in my mind of what true love should look like. Inspired by the many fairytales I would read over and over, I thought love was easy and that finding your true love would be like one of those stories that ended with the prince sweeping the fair maiden off her feet and riding off into the sunset to live their happily ever after.

As a child of ALS, I learned a whole new definition of love. I saw an incredible love story unfold before my eyes as I watched my mom give every ounce of herself to caring for my stepdad. She became an extension of him, ensuring that he was able to live out his days on his terms. Her dedication to my stepdad’s care was inspiring. Her days were filled with caregiving tasks from the moment she woke up to the second she fell asleep at night, and she would do it again and again because she loved my stepdad that much. Seeing the daily acts of love between my parents opened my eyes to a new kind of fairy tale and taught me a very important lesson on what true love really was.

I learned that true love is loving each other when it gets hard, when you are giving more than your fair share, and when it is scary. When the worst case scenario becomes your reality and you still stand strong together, that is true love. When you are willing to give so much to your partner that it all but breaks you in half, but you still do it day after day, that is true love. When “until death do us part” starts knocking at your door and you stand by your love, holding his hand, that is true love. ALS took so much away from my parents, but the one thing that it couldn’t take away was their love and dedication to each other. I learned about a new kind of love as I watched them walk through an uncertain and scary chapter of their story together. I still believe in fairy tales and happily ever after, but I’ve learned that the real love story is written in the twists and turns that you never see coming.

-Mandi

The day before my infamous exam with the neuromuscular specialist, my wife, Jamie, broke down. I hadn’t seen this from her before. The cry ratio in our relationship is 20:1 in my favor. I’m the sensitive one. She’s the juggernaut. But on that day, she let me be the rock. And for that, I love her more than she knows.

I was scared too, but there’s something about being the “comforter” that gives you instant courage and conviction. As if the “comforted” can somehow sense your inauthenticity, you have to REALLY BELIEVE what you are saying. And so she got me through that brutal day of anticipation, by affording me the opportunity to insist that tomorrow was not going to be the beginning of the end for our dreams, rather, it would be “our finest hour.”

I had resigned myself to a death sentence. Jamie’s instinct, however, was to fight this. And for that, I love her more than she knows.

She saw us at the front lines of a war. A war that we never even knew existed. She saw us being leaders and motivating other newly diagnosed soldiers. She saw us living long lives with our two daughters and growing old together. She saw us living out a new dream, even greater than the one we had originally imagined. And then I started to believe. “Could that really be? Wouldn’t that be a great story!?”

I had been so focused on beating this disease and saying what needs to be said to those I love, that the person I love the most had been left to focus on everyone but herself.

I hate that about this part of the story. But it’s an important chapter because there would be zero chapters to read if it wasn’t for her optimism and hopeful attitude.

I’m he fighter you see before you BECAUSE of her. I love you, Jamie.

-Scott