The Road Goes On Forever

People ask a lot of questions when you’re planning on doing something crazy. Sometimes I think I should make up answers because the real reasons might seem trite. “Do you listen to music when you ride?” No, I prefer the sound of the wind in the rustling corn. “How do you occupy yourself?” Watching silos and water towers get bigger. “Doesn’t your butt hurt?” I don’t have one. “What do you do when you arrive at your destination?” Turn around and ride back. “Do you stop and eat?” Nope. “Oh, come on, you must eat something.” Nope, it’s just 100 miles. So you can see why it might be easier to make something up. I ride my bike to ride my bike. It’s that simple. It’s my moving meditation. The fact that turning the pedals actually gets me somewhere is almost secondary. I have often said anyone can ride 100 miles. All you need is a halfway decent bike and a very understanding spouse. But I’m assured by most people I meet that jumping on the bike and riding 100 miles before lunch isn’t normal human behavior. When I’m on the bike I feel the disease can’t touch me. I know that’s a myth. Sitting here at the computer typing with my one good hand I can feel every muscle in my body fasciculating. I really have no idea how muscles that are in constant motion (even when I sleep) can be wasting away. It doesn’t hurt, but it is a constant reminder that my body has another agenda. On my bike I just feel the wind, the rain, the sun, the cold (the teeth of the occasional dog).

IMG_7761I have never asked “why me?” To be honest it makes perfect sense. I have pushed my body in every imaginable way for as long as I can remember. It protests, I ignore it. Mind over body. Now it’s body over mind. Several helpful individuals have gone as far as to suggest I might have brought this upon myself.  “Well, you know . . . ” On October 18th eight of us will set out from San Diego. Most of the focus is on me though, but I don’t know which is harder, being the one going through this or being the one watching a loved one go through it. In the grand scheme of things I’m not sure there’s much of a difference. Rae and I have been together 33 years. It’s difficult to separate us out as individuals at this point. We’re Rae and Ray. We’ll get through this together as we have everything else. With a lot of help from our friends. I asked her the other day, if our situations were reversed what would she be planning. At first she didn’t want to go there. But I persisted. Then she blurted something out about taking someone on a trip to celebrate a certain occasion. I told her, fuck it, do it. We’ve spent our life putting money away, saving, not turning the heat on till December to save for this golden retirement that we’re not going to share. The problem with bucket lists is that by their inherent nature they end with your death. Why wait till it becomes a bucket list? I should have said fuck it long ago. I want everyone reading this to go start a “fuck it” list. For everything you come up with I’m sure, like me, you’ll come up with ten reasons why they’re totally impractical. Do them anyway. What are you waiting for?

A little over a year ago in August of 2014 we became grandparents. In the tub in the hospital bathroom, while our daughter Lisa labored in the room next door, I accepted the ice bucket challenge. I do not believe in an afterlife. This is the one shot we get (although I am hedging my bets and have asked a good friend to save a seat for me next to Marie Osmond just in case). But we all know where this is headed. The only difference between me this year and the person who took the ice bucket challenge last year is that I can’t hide from it anymore. Sometimes I wish I could. Sometimes I wish I could go back to believing I was going to be the first person to actually beat the system and live forever. Sometimes I wish I could go back to when ALS was just a bunch of initials. The road may go on forever but we do not. What’s on your “fuck it” list?

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Peace, love and midwives

Ray

For Ben 1984-2015

21 thoughts on “The Road Goes On Forever

  1. I have to confess, I’ve never really cared for the term “bucket list”. I really don’t know why. But I can say resoundingly that I LOVE the idea of a “Fuck It” list.

    And may I take this opportunity to say what an fuckin’ awesome writer you are?!?!

    ‘Nuff said.

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  2. I am beginning to live my fuck it list as I just recently took the first steps toward ending a very unhealthy 28 year marriage. I bought a house. When I first opened the front door to this house, I felt the sense of peace fill my body and knew it was going to be my future home. Now I pursue the process of emotional healing through one of the most heart wrenching processes I’ve been through as I cannot preserve keeping my family intact. It’s ironic that you and Rae have had such an amazing marriage and this disease is stealing your health and ripping you apart from your soulmate when I am ending a marriage with the intention of becoming a healthier individual.

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  3. You’ll know you are in right place in the hereafter when you see me and Marie holding up a giant sign that says “I told you so!”

    In the meantime, ride on my friend, wind whistling throught the cornfields and all. I bet walt has a poem for that.

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  4. Thanks Ray. Reminder heard and appreciated. (And how many times have I admitted that I really heard what you said?) I think calling it a bucket list is just another of our cheap shots at thinking we are in control of what comes next. We so need reminded that this is what we’ve got. Now. So thanks for being willing to use your perspective-you-didn’t-ask-for to snap our heads up. I needed that.

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  5. I love your new name for this kind of list, though I’m more like Marie O and “don’t use that kind of language”. LOL. Thank you for sharing your thoughts. What an exemplary couple you and Rae are. One of my questions was how, if at all, does your religious convictions help you through? You don’t have to answer, but I have wondered.

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    • Strangely….Yesterday I read the Akaidah (The binding of Isaac) at services. When called upon by Hashem to do something, Avraham asked no questions about the potential task. Ever the obedient servant he simply says “hineni.” Or “Here I am.” Well, “here I am” was originally the subject of this blog entry. But I found it difficult to seamlessly integrate a Torah reading and the fuck it list

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  6. Ok my friend….nothing more than an intellectual inquiry here….no hate or condemnation or judgement intended. But….the afterlife thing – what if you are wrong?

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    • Feel free to ask whatever you want Ang. It’s always good to hear from you. Here’s my attempt at an intellectual answer. “What if” isn’t reason enough to believe. At least not for me. Plus there are a lot of people I have known that I really don’t care to see again let alone spend eternity with. If there were another life waiting, this one would have no focus. It’s all about perspective. I mean there are approximately a billion people practicing Hinduism in the world. For them the highest form of Salvation is to attain freedom from the constant cycle of death and rebirth. For me one lifetime is enough Ang.

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      • Thanks for your response & explanation. My belief is that there is an afterlife attainable only through a personal relationship with Jesus Christ. Maybe I’m wrong. But for me, the HOPE of that is what gives me my focus & perspective. I also believe that we serve a gracious & loving God who, if He has His way, will take care of those of us who fall short. Peace to you, friend.

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  7. Yesterday I had my serpentine belt break on 74, with a kiddo in the car. Turns out the alternator was screwed. I spent the better part of the past 24 hours asking, “Why me?”, and this line of thinking has been extremely toxic to me and my family.

    So, fuck it.

    #1 Visit every Big Ten football stadium.
    #2 See ALL of Europe
    #3 See Japan
    #4 Eat at Alinea
    #5 Learn to fly

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  8. Started my FUCKIT list a little earlier before you were diagnosed. A co-workers husband died suddenly of cancer and I realized that no matter how young you are, it can end tomorrow. The first thing on it:

    “Live like tomorrow won’t come.” and what comes along with that is “Vivir con miedo es vivir a medias” (to live in fear is a life half lived)

    I keep being reminded of it.
    Got a nose piercing
    Chopped off my hair.
    Got a rib tattoo of my foundfamily…
    Shared my heart with you all… family… though no relation.

    Next thing on the list:

    Decided to follow you away from the sunset and across the desert. I wish they spelled it dessert and it were filled with chocolate covered cashews and organic whole milk strawberry ice cream.

    Love you.

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  9. I have done one thing on my fuck it list, though I didn’t have a name for it at the time — married Jonathan. At the time, I asked myself, how is this going to work. And a voice inside me asked why not?. you love you him, don’t you? So I did.

    Love you Ray. I will try to continue thinking from the fuck it list perspective. I have to say it ain’t easy. When you are almost 53, and still feel have a long way to go before all is “secured”. it’s hard to think of a fuck it list. But you are right. We should.

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  10. I like the ” fuck it list” perspective. As always you have an awesome ability to write and reach people. As one previously said on here “to live in fear is a life half lived” what am I waiting for? Why always play it so safe? Fuck it! Now mind you Ray my lists are probably minuscule compared to yours or others on here I’m talking like a weekend trip spending the $$ or a short zip line for this ole oversized gal …. but hey…..it’s my list damit! Start small work up. 😘 thank you.

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  11. Ray, working on my fuck it list at this very moment. Can I just sat how incredibly inspiring you are? You probably wouldn’t remember, but you literally changed my life. I walked into Planned Parenthood a scared, clueless, pregnant, 20 year old girl; but thanks to your guidance as my midwife, I walked out a confident, educated, woman, and now mother to an amazing almost 15 year old daughter. You had such an incredible impact on my life, and I want you to know my heart is with you every step of your journey. Have an amazing “little ride.” Thank you. You have changed so many lives for the better, I know.

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