“Blow this”

October 24th, Scottsdale, AZ. It took me fifteen minutes to get out of bed this morning. Ian and Rae offered to help me get up but I was determined that I could do this on my own. When I’m on my back I feel as helpless as a turtle that had been flipped over trying to right itself. Eventually they ignored my protests, put their arms around me and said “this is going to hurt” and just hauled me up. I think more because they were done listening to my grunting and groaning rather than any altruistic desire to help.

Ian, Luci, Lynny and Ira had various time constraints and we knew from the start that they were not going to be able to complete the whole ride. So while I mend here in AZ, Lynny and Ira leave today to head on down the route with the goal of completing the last part in Florida before they will have to head home. Ian’s wife Kate is driving out from LA with their daughter Violet to pick Ian up. And Luci will be flying home to Minnesota. Which will leave Rae, Daniel, Andi and me to continue on towards El Paso, hopefully, Monday. Daniel and Andi will still be riding. So, for now at least, this is the last time we shall all be together.IMG_3642

So, do you want to hear my plan? Currently, between what we have ridden so far and what Lynny, Ira, Daniel and Andi will ride, there are miles that would not get ridden. So, I’m asking you to help make up that deficit. I would like people to ride and donate those miles. There is a site we’ve set up that you can log into and “Ride for Ray.”  Just click on the link below to log your miles. 5 miles, 10 miles, 100 miles. Anything you are able to do will help the cause.

Ride For Ray

Oh, and one other thing. I would like you to submit a picture or a short video of you riding. Just a short ten second video and send it to me at the following email address: bychopath13@gmail.com. If possible can you tell me who you are and where you are from in the email. You can also post a picture of yourself out on a ride and then put it on Instagram with the hashtag #RideforRay. Then every day on the blog as we go on I will include a video montage of as many of the videos as possible of the people out there “Riding for Ray.” It will have a totally epic soundtrack. I really look forward to hearing from you.

IMG_8427

I am contemplating things that someone who took 15 minutes to get out of bed has no business contemplating. Various thoughts have entered my mind about being able to ride the last leg of the route myself. I don’t want to just get on a bike at the Atlantic to ceremoniously dip my wheel. Obviously my physical condition will dictate what I’m capable of. But ideally I need to work for it. Maybe ride the last few hundred miles or so. I would need something on three wheels to do this. The problem with living in my head is that my brain is in constant motion.  Even when my body can barely move. I do not do stationary very well. This does not bode well for my future, I know. I’ve been in pain before but it’s been the sort of pain that I’ve been able to ignore. This pain is different. It makes itself known with every step and every breath. The one good thing about all the pain though is that it is the only thing that has so far succeeded in occasionally making me forget that I have ALS. Despite this I’m hoping that it will be back to the level I can ignore by the time we get to Florida in a few weeks.

Now that I’m not riding, Rae has changed her focus. She isn’t shoving food in my face every second. However, one of the things that we were given in the hospital was an incentive spirometer. I have to inhale and exhale into it to maximally expand my lungs and prevent the left lung from collapsing further, and also hopefully prevent me from getting pneumonia. So now, instead of food, every time that I turn around Rae is sticking a tube into my mouth and saying “Here, blow this.”

A long time ago in the initial planning stages I sent Ian a text. “Ray and Ian go for a bike ride. What could possibly go wrong?” While this didn’t go off as planned, it added another chapter to our storied past. Thank you Ian for more than I can express in words.

Peace, love and midwives

Ray

54 thoughts on ““Blow this”

  1. Ray I don’t ride a bike but I am training (running) for a marathon and half-marathon. Can I donate that mileage? It’s small doses 4x’s a week but you can have them.

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  2. I’ll be busting my bike out Wednesday just for you! And of course i’ll strap my pillow to the seat with my abdominal binder;) won’t that make a pretty picture….

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  3. Ride for Ray is a great idea! I just sent out an email with your web address to friends across the nation (who are cyclists or hopefully know a cyclist) so they can read the specifics of the Ride for Ray. As for me, I will hop on my Specialized and tear up the rural Arkansas asphalt (one mile at a time, ha ha!) as soon as the rain stops! Ray, you keep healing those bones!

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  4. Friend sent this to me. I just started riding again. Today I got 20 miles in and this past Thursday. 30 miles. Don’t get to go very often. Live in central Illinois. Not sure how to log the miles in to help.

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  5. Hi Ray,
    We’ve never met, but we’re transplants from C-U to Scottsdale and have several mutual acquaintances, I believe. If you want a guest room or two for a bit please feel free to get in touch…217-621-1050. It would be our honor to have you recuperate with us for a while…or even just stop in for a meal.

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  6. Hey Ray,

    I joined the Strava group to ride some miles for you. I think you know my father Andy Carroll. I’ll see what I can do about pictures/video for the montage.

    Not sure what your route is but let me know if you’re going through Austin TX, I have an extra room waiting for you.

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  7. Does riding in Israel count. We can give you 16k each around Talk Aviv. Lots of things have changed around here. Robin and Victor

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  8. I can’t ride anymore but I am sharing your info with a friend of mine in Iowa who has done RAGBRAI (http://ragbrai.com/) rides before and does love to ride. I am sure he would be happy to ride for your cause and I will ride in spirit remembering my very old powder blue huffy that I rode during nursing school. Many blessing to you and Rae and everyone.

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  9. Ray I was so shocked and sorry to learn you were diagnosed with ALS. My brother was diagnosed with it at 28. I hope you heal quickly from your injuries and get back on that bike. Best wishes for the future. Honored to have known you, Sheila

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  10. Will riders be doing the originally planned route all the way to the east coast? Are riders invited to join on a section of the daily route for you? If, so we’d need planned start locations and times. If the plan for you to do the last section is possible, would it be within logistics to have riders join you there? The concern is the potential size of the group on the road.

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    • We would love that. We’re thinking the week of the 18-19 November. Although everything is up in the air obviously. They can hold up the bloody traffic. The MDA can arrange an escort. The fire department can escort us. (in case I fall off again).

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  11. Nate and Jane and I will ride in 1 mile increments and log them, its not much but they are small.. You didn’t deliver them, but you helped keep them healthy in utero.We will get a video and post to instagram

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  12. Hi Ray & Rae, coincidentally on Friday I was starting my longest bike trek to date. Covered the Katy Trail rail trail end-to-end in three days of riding (236.5 miles). I tried donating and probably messed it up since I think maybe it says I did the whole thing in one day. But I’m new to the distance tracking sites just as I’m new to distance biking. I started before learning of your ALS and your planned ‘little’ ride – but it has definitely kept me going and believing in what felt like the impossible for me. So thank you for so much. Will try to figure out sending video!

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  13. Hey Ray, Lynne Reagan (you’re connected by Carle in Urbana) reached out to me since I’m a cyclist and can help spread the word about completing your ride, but I have another question for you: I understand you’re heading to El Paso-do you need any assistance there of any kind? I have many connections to the cycling community there and can help “connect the dots” if nothing more than recommending good restaurants, etc., or more significant contacts too. Happy to help in any manner that makes sense. Beth Nobles

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  14. Ray,
    Would especially like to ride the planned route east of Austin to west of Conroe and possibly beyond. Can you or Rae send me the planned route in this area of Texas? Stay Strong! You’ve got a great support staff around you.

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  15. Will get you 5 miles a day. Don’t know how you bikers do it. After that my butt hurts and my fingers tingle. Do you need a place for anyone to stay in El Paso? I have s cousin there who I could probably impose on if they are in town then

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  16. My husband with ALS will be riding in his mobile wheelchair in a 5k walk for breast CA support this Sat. His name is Joseph Lee Beverly and he was a professor at the U of I. Diagnosed with ALS in 2013. Count his 3 miles please. You honor him with you tremendous courage.

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  17. I was doing that before you posted htis… .. Saturday we had a work gathering out in Mahomet and I forgot to ask for a ride … and it was just a teeny bit windy. So plowing into 20+ mph (gusts to 30) I was offering up the struggle to the specific folks I know who are struggling with their bodies, yourself included…
    So Saturdays 40 and Sundays 29 miles (we had the Full Moon ride out to Sidney for ice cream) go your way…

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  18. Hi Ray, do indoor miles count? Not as scenic, but lots the Champaign County Y has tons of avid cyclists and we can send you our virtual miles.

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      • Jenn, my thoughts exactly: I was thinking of talking to you, Alejandro and Matthew to see if you could ask the folks in your class if they would be interested in logging in the their miles, as a group, at the end of each class, and make a short video to share with Ray… What do you think? Do you want to talk to Alejandro and Matthew (and perhaps other instructors you know?) or I would be happy to talk to them.

        Ray, sending healing, loving thoughts your way. Don’t forget to “blow it” though. You want to make sure you will be well enough to do at least a few miles at the end of this incredible cross-country journey. Stay strong!

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  19. Hi Ray,
    We are runners not riders but would love to donate our miles to you! I’ve shared this with my biking family and friends.
    The Takahashi Family

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  20. Looks like we should be able to make 50000 by New Years Day….and it’s good for me as well. My wife has been completely disabled by MS (she can’t walk, stand, care for herself) so in some way this allows me to do an MS ride by proxy. Hope you get back to cycling of some form soon (trikes are super fun BTW).

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