November 17, 2015. Palatka, Florida. As we near our goal I feel compelled to switch from Eastern time to Leonard time. After our first visit at Easy Street Recumbents Micah set about detailing the modifications that would be needed in order for me to be able to safely ride and operate the trike. That evening he sent us an email attachment of the itemized invoice. There were nineteen suggested options/modifications. The title of the attachment was “The Spoonermobile.” Images immediately came to mind of me riding around wearing a mask with a cape billowing behind in the breeze. When I clicked on the attachment there was a picture of the trike under the banner “Your Chosen Configuration.” When it hurts so much to move that you flinch when someone walks too close to you it’s hard to imagine what it will be like to be pain free. Three weeks ago it took two people to help me out of bed. Yesterday I rode a trike 82 miles.
You got me singing
Even tho’ it all went wrong
You got me singing
The Hallelujah song
–“You Got Me Singing”
I can still operate the gear shifters and brake levers with my right hand without too much trouble. Holding the steering steady above 30 mph can be dicey but doable if I don’t put too much power into the pedal stroke. Other things are getting harder though. Brushing my teeth, holding a mug by the handle, opening doors. My voice is already pretty much shot. And I would love to be able to finish a meal before it was stone cold. All that aside, unless something else gets me first I am going to die of respiratory failure at some point. But when you are told you may have ALS you don’t really think of any of that. It’s hard to conceptualize not being able to eat, breath or talk. There are many struggles that lie ahead but the thing that hits the hardest is the knowledge that one day soon someone other than me is going to be wiping my arse.
We find ourselves on different sides
Of a line nobody drew
Though it all may be one in the higher eye
Down here where we live it is two
– “Different Sides”
I may have mentioned (once or twice) that I’m a nurse. And as such so are many of my friends. Many of them, bless their hearts, have said they wouldn’t have a problem taking care of that particular function for me. As honored as I am at the multitude of offers the problem is that I’m a private pooper. I try to wait till everyone has left in the morning before going. I know where all the really out of the way bathrooms are in the hospital. If I’d had a stroke on the pot it would’ve been days before they found the body. Fortunately modern technology has given us some alternate options. There is a device that sits on the toilet seat that with the push of a button can take care of that “Necessity Care Function.” Granted, someone will have to push the button. Not to mention help me on and off the toilet. But hey, who wouldn’t want to pamper themselves with a gentle, warm aerated stream on “turbo” setting.
There are many mental adjustments that come with riding a trike after a lifetime of riding a two wheeler. Each time I sit on the bike I want to reflexively reach for the seat belt. Then there is the extra width that comes with having two wheels in the front. I keep leaning to the right laboring under the misapprehension that this will somehow make me narrower but alas the trike remains the same width. And trust me, I never lean to the right in any matter. I have always admired riders who can come to a halt and balance in place without falling. But hey, guess what. I can do that now. In fact, that’s one of the best things about the trike, when I come to a stop I don’t have to get off. I can have a drink, check my phone, take a nap. The possibilities are endless. I have also spent a lot of time pondering my visibility as semi truck wheels fly by just a few feet from my head. In order to increase visibility I now have my own official freak flag.
When I first considered buying a trike, first and foremost was the worry that no one would talk to me when I got home. I mean, three wheels! The last time I rode something with three wheels was probably 50 years ago. But my future is going to be a clinic in adjusting to regression. Soon I’ll need a sippy cup to drink from, a drape to keep me clean while eating. And did I mention that I won’t be able to wipe my arse? That being said, after the first day I felt like I’d been riding a recumbent forever. It didn’t take long to adjust. If I can get used to something so different from my ingrained frame of reference in this short a time I think I can adjust to anything. Maybe even sharing the bathroom. In a totally unrelated bonus, Rae and her business partner own a chocolate retail store called “The Bent Bean.” She loves tooling around on the Spoonermobile after I’m done for the day. Recumbent riders are collectively known as “Bent Riders.” To be honest, that alone was reason enough to get the trike.
And let the heavens hear it
The penitential hymn
Come healing of the spirit
Come healing of the limb
-“Come Healing”
On the 19th, if all goes according to plan we will be at the Atlantic coast. We shipped my bike home to make room in the car but kept the front wheel with us. I dipped the back wheel in the Pacific and I’ll dip the front in the Atlantic. It’s not exactly how I imagined the event would transpire but does anything in life ever work out like you imagine? You adjust and move forward. Or sometimes backward or to the side. But hopefully over time, there is forward motion. Even if that involves getting used to going backward.
I’m tired of choosing desire
I been saved by a blessed fatigue
The gates of commitment unwired
And nobody trying to leave
–“Crazy”
So I guess you’re wondering when I’m going to get to the meaning of life. As you can imagine, to even think about taking this journey I would have to spend a fair amount of time in the saddle. And you’d be right. Back home I generally don’t ride with anyone. I just commune with the corn. Riding is my moving meditation. But I do believe that over the course of my decades in the saddle I have come to understand the meaning of life. And I was wondering if, by way of thank you for all the support and encouragement, would you mind if I shared it with you all today?
Now, I should emphasize, this is not information that should be sought lightly. While it may be divine in its simplicity, it can be transformative if you accept it as your credo. If you’re in a relationship and both of you like to ride and one of you takes this information to his or her heart and the other does not, it has the potential to lead to great disharmony. So I’m going to give you one last chance to stop reading.
Still with me? Ok, here it is:
If you’re stationary, you’re not moving.
Peace, love and midwives
Ray
Ray's Little Ride 
Ray I enjoy reading these. I love seeing the happiness in your eyes because you’re doing something you love. It’s inspirational to me. Like I have told Lisa, if there is anything youneed, I’ll be there. If there’s ssomething you need help with, I’ll be there. If there’s anything at all, I’ll be there. Why? Because you’re family to me. I love you as if you were my dad. You have helped me so much and have shown me the different perspectives on life. You helped me on my journey of being a better person and a mom. You have done so much more than you think. I am SO proud of you! You are such a strong individual. Yiu never give up. If you get knocked down, you get right back up. I cant wait for you to come home to see my daughter and hold her. I miss you guys a ton! With lots of Love, Shelby and Pinnelopie♡♡
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That which you are seeking is causing you to seek.
I was as bathroom-private as you, but ALS taught me that there are aides at the opposite spectrum end that consider it a high service to clean me bum. Sometimes I pretend that I’m an African prince like Eddy Murphy in the movie Coming to America, where he was not allowed to touch his royal do-do. It’s a small thing to overcome compared to the difficulties we face. ALS is a master school, not for the weak of heart. Embrace it!
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Am trying to embrace. But as I mentioned in a previous post. It’s like being forced to develop and incredibly intimate relationship with someone I wish I’d never met.
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Wow! I love this post Ray. I share your love of the road. It takes a pretty cool cat to make a recumbent super-cool; and you are it! Makes me want to join the ranks of bent riders myself!
Thanks for sharing your journey with us. And, for sharing your take on the meaning of life. Once I went to your office and you had a photo of you riding up on the wall with the words “all who wander are not lost.” I was 7 months pregnant with Dara and on bed rest. I spent a lot of time thinking about the pic, the words and what they meant. So, thanks for sharing more profound and insightful words & images for all of us to ponder.
My Paramount is hanging in the garage. But it had some great times with long miles. Not as many as yours tho!
We’re all looking forward to having you back in C-U. The corn is all down now. No wind break. Hope to see you on the road here soon. Mark & I would love to check out the trike IRL! Hugs -Anna & Mark
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Have been following you. You are very brave. And inspiring to us who really do not have big things wrong. At 77 I need to hear that. Keep moving I certainly well. Will not be stationary. Thank you. Carol Hausmann. Tuscola Il.
Sent from my iPad
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Ray, I was one of your patients for all three of my pregnancies. I had two boys, and was pregnant with my little girl, due in August this year. At my 32-week appointment you came into the room and I told you I was ready to have this baby. At my 40 week appointment, i was telling you how done I was and couldn’t imagine going another full week being pregnant. You said to me, in the grand scheme of things, whether she’s born this week or next week or another two weeks, it won’t matter in 20 years. Do you remember? And here I sit, at this moment, feeding her. She actually did come out! 🙂
Little did I know what you were going through at the time! What an insignificant thing to be stressed about, when I knew for a fact she had to come out eventually and I wasn’t, in fact, going to be pregnant forever. I wish I had known what was going on with you at the time. I would have had so much gratitude to bestow upon you face to face. I am so grateful I met you as my amazing midwife, and am in awe of your attitude during this journey of yours. It’s incredible how much you’re still inspiring and giving to others.
I am cheering for you and will forever speak your praises to everyone I know.
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In Madison it seems like bent riders are way hipper than anyone else on the trail. They’re respected because they ride fast, they’re wiser, and ultra in-the-know, but always friendly and encouraging. During a quick ride one day a bent rider who had been behind me for several miles finally passed and said, “nice pace!” Two wheelers sometimes nod, or even smile but never compliment, and it happened to be a day when I needed someone to remind me of humanity’s kindnesses. How did he know?
In my mind you’ve now graduated into the Ph.D. of cycling! And the meaning of life obviously came straight out of the bent riding experience. As for the meaning of life, I couldn’t agree more with your interpretation but certainly couldn’t have come up with the thought or words myself, so thank you for that aha moment. You are so right, Spooner Man (is the cape ready yet?).
We’ll be admiring your pace from Wisconsin as you ride into St. Augustine. Cheers!
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cape is ready. It will be the tattered remnants of my Ride For Ray jersey
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My trike is a god send, as I can tell yours has been. ALS sucks so enjoy the ride.
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Ray,
As a reminder, I met you at Community Blood Services of Illinois. I worked in the apheresis department and you gave selfishlessly as often as you could. I will always remember your gentleness and soft voice. When you spoke of your wife and children, you exuded love and respect. Ray, I am sad that you are struggling with ALS but if anyone can do this with grace and elegance, you can, you will, you ARE !! I am so glad to know you and have really enjoyed following your ride. Stay strong and take care 😊
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Ray – I do not know you. I have never met you. However, being friends with Irene, Sara, and Wendy I feel like I now know you. You are an amazing human being. Thank you for sharing your ride and your ALS with all of us. Keep moving, my new inspiration!
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What a role model you are for us all. No matter what curve balls come your way, you adjust. As we age, we are faced with decline, so we appreciate hearing all about your adventures. Love you!
Judy
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Ray, I don’t know you or anyone who does. I was seriously ill and developed an infection called C-Diff after surgery. The long and short of it was I had violent, uncontrollable diarrhea as many as 20 times a day. I too had been a private bathroom person. It all went out the window when this happened. I was bedridden and would gladly have kissed the feet of the numerous people who had to change me and my bed. One nurse even said, “It’s ok you can’t help yourself right now but someday you’ll be the helper”. You are already a helper! Hang in there.
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Dear Ray ,
I learn from you every day. I am moved by your spirit. I am grateful for the depth of your honesty. I love your sense of humor. Your ride and your blog have made a friend of someone who has until now been an acquaintance. You and your family have another person to call upon when you are back in town.
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You know Ray….that steamy butt shower is not the same as having it done gently by a loving friend…you just dont get that up close and personal feeling!…lol. Don’t forget our words. I continue to be awed and proud of you. – Amy B./ CMA
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Like you I’m a biker and I toast you Ray, and Rae, and your family and supporters from all over. Your life and actions are poignant and meaningful and inspire the rest of us to embrace life. Im also someone who has lost people I loved beyond words – one from Familia ALS – generations of loss. 20 years ago I was in the room while a beautiful baby girl was born and you were a powerful and loving force in the room. So although you don’t really know me I wanted you to know you’ve touched my life in a very meaningful way.
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