You can learn a lot about a person by what they hold dear to their heart. It seems we find comfort in the strangest of things at times. Could be a person, a food, a smell, a piece of junk that no one else wants or sometimes a place.
On the way to Mattoon on County Road 1000E there is a farm house. It’s about 40 miles from my front door and is in the middle of nowhere. Humboldt to the west is probably the closest town. Out front by the road is an outhouse. It has shown signs of wear and tear over the years but I am irrationally relieved (no pun intended) to see it still standing year after year on my first long ride south each spring. Seeing it is something I look forward to each time I take that route. That part of the road is pretty torn up with potholes and chunks of blacktop strewn here and there. It’s probably more conducive to 4 wheel drive than a high end road bike with 23 mm tires inflated to 140 psi. But for some reason I need to know that the outhouse is still there. I slow down as I pass, wanting to relish the moment because I know each time could be the last.
Earlier this year at a doctor’s appointment, the neurologist suggested that it might be time to start checking things off my bucket list. There were only 3 things on the list: spending time with family, becoming a Bar Mitzvah, and riding my bike coast-to-coast across the US. I thought next June in 2016 would be a fine time for the last item. But our neurologist smiled politely and said, if it’s really that important to you then you should do it this year. I protested a little saying we had a lot going on this year and I didn’t think I’d have time to train, but he repeated, almost sternly, “If it’s at the top of your list you should move it up.”
At the time I didn’t have an appreciation for the speed the disease is capable of moving. And the progression is not linear. You can’t look at where you were three months ago and attempt to predict where you will be three months hence. ALS doesn’t play that way. Since my early twenties I have gotten up every single morning and done 100 pushups. Now, I often just lie in bed and look at my clothes, dreading the coming battle of putting them on. I know, I can ask for help. But that time will come soon enough, and I’m not ready to go there just yet.
I’ve often wondered whether the degree to which I’m pushing myself physically is making me weaker or stronger. I know that strength I have lost to the disease will never be regained. I know that while I have just lost functionality in my left arm, the disease is everywhere. Every muscle in my body twitches maniacally. They’re called fasciculations, or “fascics” since we’re on a first name basis. On July the 4th, I rode 225 miles up to Michigan to see our daughter Sophia at camp. It was three weeks before I felt completely recovered. It was almost as if I had used up something that I wasn’t going to get back. I began to have doubts about whether I was going to be able to do the “little ride.” It was still two and a half months away. And two and a half months can be an eternity in ALS time. I’ve since limited my training rides to around 100 miles. And after a period of seeming stagnation, I do feel that I have started to get stronger and faster again. How this translates to repeated daily punishment, well, time will tell. I could probably ride longer and faster. But just because I can doesn’t necessarily mean I should. Working within limits has never been my forte.
I have contemplated telling the owner of the house how much their outhouse means to me. I’ve seen him outside a few times. A big burly dude in a cutoff t-shirt. Thick suntanned arms. Generally covered in sweat from weed whacking. But he probably owns a dog. And a gun. But somehow I think if some skinny dude decked out in spandex came waltzing down his driveway and started waxing poetic about his outhouse, well, I honestly can’t see it ending well. So I just ride on by. Occasionally sneaking the odd photo.
I often think back to the moment in the doctor’s office and his suggestion of checking off items from my bucket list. I’m struck by how short the list was. Rae and I didn’t have to discuss anything, we knew what would be on the list. It has been a full life. I think it’s inevitable that everybody suffers a sense of something left undone, unfelt, unexperienced. I think I’d always want to see more but when it comes down to it, between our family, our traveling adventures and working as a midwife I have seen more than I ever dreamed of.And . . . I have seen the outhouse at the end of the Universe.
Peace, love and midwives
Ray
Ray's Little Ride 
Ray, you are such an inspiration to me… You are such a strong man with such a positive attitude!! I wish you the best on your ride!!
I will be following you ! 😊
Tina Modglin
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Thanks Tina. Your endless energy at work was also something I admired in you. You were never stationary. People like me notice these things
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I just want to hug you! You right exactly as you speak. I love the person you are and I am praying for you it breaks my heart that you have to go through this. And despite your challenges you take the time to share all of that with your friends thank you so much! I love the outhouse to! The no dumping sign on the side is hilarious. Somehow I think if the owner put that sign on the outhouse you would be ok to approach him. Never let fear get in your way of attaining a goal. The two most repeated phrases in the Bible are “Fear Not”.
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Ray, this post has brought the prairie back to me. Thank you for the beautiful reminder. Sara
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You are an inspirational man Ray. Inspired by you I am going to start running and getting stronger and along the way Ill always be thinking of you. I managed a few hundred yards today. And now for ten push ups. I hope this makes you laugh at how hard this is going to be for me. 1 2 3 4 ooh agh arghh Ray forever.
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So….I’ve always thought “Ray rides a bike. A lot. Good for him. I wish I liked to ride but it just doesn’t “do it” for me.” So Sunday I climbed on Mike’s bike that he just recently again started riding. I rode a little over 4 miles. It was good. I really enjoyed it. So much so that Monday I did it again but this time went 9 miles. This time was different. I was thinking of you almost the whole time. I rode out into the country. I thought about how this perfectly beautiful day with almost no wind was ideal and how YOU ride in ALL weather conditions. When my legs got tired my mind said “suck it up Sally – Ray can do this with ALS so quit complaining!” So ya…I get it….sort of. I get the wind in my face, the sun on my skin, the REALLY noticing outhouses and flowers and clouds and the gravelly spots. I get it because of you. Thanks. I get it now.
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You’re absolutely right. My first ride wasn’t 100 miles. Surender to it and keep going. I’ll meet you half way
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Love this one, like I do your other ones. But this one especially because it brings me back to that part of Illinois I truly love. The openness and nothingness …. As a jakarta girl, this is the America that really attracts me. Yes i love the cities, yes I love NY.. But the openness, the sky, the seemingly empty lots of America is what’s so special for me. And your piece takes me there. Even with your ALS you are giving people a ride. Thanks Ray….
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Ray, I doubt you’ll remember me, but I was present for the birth of Rhiannon Jeffers (mom to Tiffany Clay-Jeffers). Been trying to keep up w/ your delightfully-composed posts. So very sorry to hear of your diagnosis. The world needs more people like you. Despite the travesties of this illness, you keep on keepin on, & I appreciate & respect your positive outlook, even after your accident. Ray Spooner, u belong to a special group of people whom I wish I’d met a long time ago. You are truly an inspiration, & you’ll always have a special place in my heart, for helping bring our Rhiannon into the world. My best to you & your team & family.
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Ray you are truly one of a kind free spirit. You are an inspiration to many. To me, you are my hero, my angel doctor who cared for me and my unborn miracle; that I was “told” by an ER doctor, I would loose. Recently, this miracle turned 11 years old.
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