A personal campaign sponsored by Sophia Spooner
January 18, 2017 — January 22, 2018
Hello friends, family, acquaintances, and everything in between! Our names are Yoni and Sophia. We met in the summer of 2013 and have been together ever since. As many of you know, we lost my dad, Ray Spooner in August. Before he passed away, he raised more than $85,000 by biking across the country to benefit the Muscular Dystrophy Association (MDA). He did this despite his understanding that the money he would raise would have no impact during his own lifetime. This summer, the two of us plan on hiking the Pacific Crest Trail, a 2,650 mile hike on the west coast of America that begins in Mexico and ends in Canada in order to continue the work that he has started.
There is a ton of ground breaking research being done right now to slow down the effects of ALS, but we are far from a cure. Researching ALS and its effects and causes costs $75 per minute. Our goal is to raise $10,000, and 100% of every donation will go to the MDA. Any donation is appreciated.
Below are our two stories that give a better explanation of why we have come to this decision.
Let’s end this disease together.
Sorry, we’re too young to have a cool sign off
Yoni and Sophia
In my short (or long) 23 years of life, I’ve noticed that there’s an obvious energy to a room when bad news is coming. The air feels thick and concentrated and the tension between people is almost visible. On January 2nd, 2015, my parents sat me and my boyfriend of about a year and a half, Yoni, down for a “talk”. Before they delivered any news, the room felt darker, like it was going to collapse around us. Every second felt like a never-ending pause in time. We knew something horrific was coming. We were right. My sister, Lisa, was the one who ended up breaking the news of my dad’s diagnosis. He had said he was tired of saying it over and over again. Like so many others, my first thought was, “What the fuck is ALS?” But as he told Yoni and me about the disease, I felt my lungs tightening, my stomach was a rock, and that there was a 40 pound weight on my head crushing me.
There are some moments where disappearing and sinking into the ground to be swallowed by the earth seems like a much better option than being where you are. This was one of those instances. But what I didn’t know was that the following year and a half would hold the best and worst moments of my life. I had recently returned from being abroad in India for the fall semester and the next day, I was scheduled to go to back to Galesburg, Il where I attended Knox College. That was a difficult year, but I got through it with the love and support of my two roommates and best friends, Julia and Amelia, Yoni, and my fantastically untraditional family (and others of course, but there are too many to name).
Two major things over the past 1 ½ years have led me to write to you. The first event was a former teammate and good friend of mine from the Knox Ultimate Frisbee Team set out on the Pacific Crest Trail, a 2,650 mile hike that starts in Mexico and ends in Canada and goes through California, Oregon, and Washington. This sparked a small idea in my head that would later grow into a much larger idea, but more on that later.
The second was my dad’s “Little Ride,” as I am sure many of you are very familiar with, so I will not go into great detail about here. (But if you have not, please check it out at https://rayslittleride.com/)
If you never knew my dad, first of all, I’m so sorry. He was the coolest person you never met (with the exception of my mum, of course). He never did anything half-assed, he was the hardest worker I will ever know, and the most determined person I’d ever seen. His commitment to music, biking, midwifery, and making inappropriate jokes was unparalleled. So it was no surprise that he decided to bike across the country to raise funds and awareness for the Muscular Dystrophy Association and ALS research seconds after his diagnosis. To this day, he has raised $85,870 for the MDA and still counting.
In June, 2016 I graduated from Knox. The ALS was progressing quickly in my dad and it was clear that he didn’t have years left like we all hoped he would. I moved back home to join my mum in being his caregiver.
I quickly learned how to do the basic tasks, such as feeding, teeth brushing, getting him in/out of bed, but most importantly, being his personal saliva remover. And damn it I was very good at it.
My brother Manu shortly joined us from Chicago and my sister was always close with her son Jack in case we all needed a good laugh. During that summer, my dad gave us a gift that I will cherish for the rest of my life. I cannot put words to it, or even describe it, but I can tell you that the bond that I created with my mum, brother, and sister was something that will always be with us. We laughed and cried together, we made bad jokes, made fun of my dad for being a “Mr. Drooly Pants”, made up songs, and learned to pick the perfect playlist for every situation (which if you think is easy, you haven’t seen my dad’s iPod). Those were the best times, and my dad progressed with more grace and class than I ever could have imagined.
It was only appropriate that his health degraded so quickly. He never did anything half-assed, so why should his ALS? On August 8th, he died due to respiratory failure while surrounded by his family.
The moral of the story is, ALS sucks. It takes away everything from the person who has it. And as can any disease, it can tear a family and community apart and at the same time create a lasting bond.
Sophia and I met during the summer of 2013. A few months later, I got the good fortune to meet her parents, Ray and Rae. In our first conversation, Ray told me about moving to Israel, his decision to stop drinking alcohol, and how he views people who are able to eat habanero peppers with a little bit more respect. He proceeded to take a spoon from the silverware drawer, fill it up with homemade habanero salsa, and place it on the table in front of me. He then turned around and walked away. I like to think that the moment he walked back to find the spoon empty was the beginning of our relationship.
People who knew Ray are familiar with his fascination of music. He had a gift for identifying the emotions of a room and then strengthening them with the perfect playlist. After his diagnosis, I made one of the greatest sacrifices that I had ever (and hopefully will ever) have to make: I wiped my iPod clean and let him upload all of his music to it. Initially, the separation anxiety was real; after a little while, I began recognizing the uniqueness of the playlists he spent months constructing. The amount of himself that he threw into his playlists came through in a pretty remarkable way.
Music was not the only thing that I was lucky enough to share with Ray after his diagnosis. In the waning months of his ability to speak, I asked Ray if he would be willing to tell me more about his life. His response was something along the lines of “there’s no question you can ask that I won’t answer.” His openness led us to a dozen amazing cups of coffee together, during which he described with striking transparency many things about his life, including his childhood, world travels with Rae, his decision to pursue a career as a midwife, and his relationship to Judaism. When the coffee shop was quiet, we would talk. When it got a little bit too loud, he would type paragraphs to me on his iPad while I held back the urge to ask another question before he finished typing.
Ray’s remarkable commitment to openness did not fade in the last few months of his life. Ray and Rae opened their home to me and responded to the increasing vulnerability that comes with ALS with a fierce commitment to hospitality. Their door has always been open, and the circumstances of last summer did not close it. They would not allow ALS to seclude them from the people they love. A month and a half before he passed away, Sophia began spending the night in their room. A day later, he typed to Sophia that if she’s going to be sleeping in their room, he doesn’t want me to be downstairs without her.
There were so many things that stood out to me about Ray. He treated his own experiences and relationships with love, but never intrinsically valued them higher than other people’s. He was committed to equal treatment of everyone and was perplexed by those who disagreed. Somehow, he never lost his ability to love and respect everyone, even the people with whom he disagreed.
First and foremost, I’m doing this hike to support Sophia. But loving Ray is a close second. And not far behind that is having something cool to tell people that I’m meeting for the first time, because I’m no stranger to awkward silences.