Ride for Ray video #10

November 24, 2015June 24, 2016 rayslittleride The Ride ALS, Cycling

Homeward bound. November 23, 2015. I’ve been receiving a great deal of kudos for completing the ride. But whether or not I finished the ride was to a large degree out of my hands. It was more dependent on the people with me. No matter how much I wanted to finish, if I hadn’t had the support of Rae and my fellow team members, I would not have made it to St. Augustine. This video is more of a tribute to all the people who have contributed to the successful conclusion of the ride.

With the miles being donated to “Ride for Ray” we are well over the amount needed to circle the globe with over 42,000 miles donated so far. But a ways away from getting to the moon. One of the riders has suggested an interim goal of riding as many miles as dollars donated. With the current donations at $57,700 against a goal of $75,000 we are well on the way and for those of us living in climates that are less than ideal, this may provide us with the extra incentive to get out and keep riding.

Just a thought

Peace, love and midwives

Ray

Bookends

November 20, 2015June 24, 2016 rayslittleride My Blog ALS, Cycling

You know how it is when you have company for dinner or you’re just hanging and shooting the shit with friends and one of them says: “Have I told you the story about………?” And their story reminds you of a similar experience that you had and you want to share your story too. Well, it’s been a while since I’ve been able to share a story. At least verbally. I speak in short, concise, carefully worded sentences. And then only if there is no background noise and I know the person I’m speaking to. I will sometimes attempt communication with a stranger but only as a last resort. But seriously, does cappuccino really sound like cup of water? This blog has become my vehicle for telling stories. So if you have a moment there is a story I would like to share. Are you sitting comfortably? Then I shall begin.

August 11th, 1980. Tel Aviv, Israel. We got off the plane at Ben Gurion International Airport and stepped in the sweltering Middle Eastern summer heat. I had traveled to Israel with my good friend Brian. We made our way to the volunteer office and were randomly assigned to Kibbutz Degania Bet in the Jordan Valley. When Brian and I first arrived on Degania we discovered fairly quickly that among the volunteers there was a well-established hierarchy. You knew who the veteran volunteers were because they had fans in their rooms. The rest of us had to suffer through sleepless, suffocatingly hot and muggy nights. In England it was always so mild that I didn’t even need to open the bedroom window in the summer. But in Israel, when I got up in the morning my shape would be outlined in sweat on the mattress. One of the veteran volunteers whose fan I coveted was this American girl with the same name as me. But she resisted all attempts at socialization. Many years later she said that this was because she had a lot going on in her life and didn’t want to get involved in any new relationships. Relationships? All I wanted to do was to borrow her fan.

Two weeks later this girl left to meet with her parents who were vacationing in England at the time. I stayed on Degania for another nine months but eventually had to seek gainful employment off the kibbutz because I had spent my air fare home on a new tape deck.

October 18th, San Diego, CA.

When I look back at pictures of our departure from San Diego it seems as distant as the time that I arrived in Israel. We’ve all been on the road together for a little over a month but the west coast seems like a lifetime ago. So much has happened. There has been more than one occasion when I thought the trip was surely over. I have relived the moment of the crash a hundred times over. I do not recall how I got so close to the curb on the left of the path. I may have been looking ahead. A moment of inattention on a clear path. I may still have hurt myself if I’d landed on gravel. But I didn’t. I landed in a small patch of rocks. The only patch of rocks for as far as the eye could see in either direction. The “perfect storm” of bike crash conditions. It was almost as if the rocks had been waiting for me to happen upon them. As we have driven across the country I have given a lot of thought to what might have been. It’s useless to do so I know but sometimes it seems your brain just wants to taunt you. Yet somehow, here we are.

When I left the kibbutz I got a job on Moshav Givat Yoav on The Golan Heights. I herded sheep, weeded tomato fields, fixed irrigation systems, weeded olive groves, built barns, weeded cucumber fields, cleared fields of rocks, so that they could be planted (and then I weeded those too). And all for the princely wage of a dollar an hour. But after nine months of working from dawn to dusk six days a week I figured that I had enough money saved for a plane ticket anywhere in the world that I might want to go and should even have enough left over for a few beers. So I went back to Degania to regroup. And who should have just returned a week or so before but this unsociable American chick. On my first day back I remember standing on the porch of the volunteer building seeing her return home from work. This girl that I had first encountered for just two short weeks, over eighteen months ago. Who, for some reason, had occupied my thoughts in the interim for more time than I care to admit. Walking towards me across the grass between the date palms. Wearing the faded blue, sun bleached workers’ uniform of the kibbutzim. Covered from head to toe in dirt from working in the banana fields and of course, totally oblivious to my existence. This time, however, things were going to be different. Although we had both just returned to Degania, since we had previously spent a significant amount of time there in the past we were both instantly afforded “veteran volunteer” status. So now that we were on the same social strata, verbal communication between us was acceptable. So I said: “would you like a cup of tea?”

A week or so ago it was just me and Rae in the car driving through Louisiana as Daniel and Andi were riding. Then out of the blue Rae asked “How will I know you’re still with me?” While the question surprised me, I did have an answer. But when I tried to verbalize a response I couldn’t get the words out. The thought that one of us would not be with the other had never really occurred to me. Even if one of us is not there physically the essence of that person remains embedded within the person whose life you shared. So really, how can we ever not be together. I’ve been making movies for Rae for her birthdays for when I’m not around. Rae says I’m her memory so each mini movie is about a certain time or event in our life. How many thousands of conversations have we had? Granted, given my lack of propensity for conversation, even when I could talk, we’ve probably had less than many couples who have been together for as long as we have. But even that lack of conversation is part of our familiarity. How do you measure the essence of what it is to become so utterly familiar to someone? So well known and ever-present that the two of you become indivisible. And then to lose that physical essence. How can you not be there. Ultimately, for better or worse, that absence takes on a presence all of its own. I will always be there.

November 19th, 2015. St Augustine, FL. When I dipped my rear wheel in the Pacific it seemed a little silly really. There were all these beach goers around us and I was getting sand in my cleats and I imagined everyone looking at us and thinking, there go another bunch of idiots. I just wanted to be done with the silly ritual and get on the road. When I dipped my front wheel in the Atlantic it was one of the most emotionally overwhelming moments of my life. Rae was holding Jack in one arm and gave me my bike wheel with the other. I wanted to hold her hand. It didn’t feel right to do it alone. No matter how much time, work and planning you put into a task, no one ever gets where they are going alone.

I walked forward towards the surf and the the sounds of our friends cheering was gradually drowned out by the sounds of the waves. As the surf washed over my legs they felt like they were going to give out. Not because of the strength of the current but all my strength just left me. My legs got me this far and they were done now. All there was in the world was the water washing over me and Rae’s hand on the back of my neck. I think I was baptized as a baby. I don’t recall the event. This I will not forget.

Peace, love and Midwives

Ray and Rae (and Ian, Luci, Andi, Daniel, Ira, Lynny and Bill)

The Meaning Of Life

November 18, 2015June 24, 2016 rayslittleride My Blog ALS, Cycling

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

Ride for Ray video #9

November 16, 2015 rayslittleride The Ride ALS, Cycling

November 16, Gainsville Florida. Feeling stronger each day. Kind of makes me want to go back and ride the part I missed. Oh, how soon we forget. I’m guessing Rae would probably have something to say about that too. Should probably quit while I’m ahead. And still married. And still alive.

We’re almost there. We plan to arrive in St Augustine on the 19th. Don’t forget to keep logging your miles at Ride for Ray. The miles you have logged so far have made it around the world and then some. 32,6oo miles. There are a lot of crazy cyclists out there (as if I didn’t already know that). If you are already on Strava, just join the group and your miles will be automatically added. We look forward to including you in our next video. Send pictures or video to bychopath13@gmail.com with a message about yourself and who you are and where you are from.

Peace, love and midwives

Ray

Ride for Ray video #8

November 14, 2015June 24, 2016 rayslittleride The Ride ALS, Cycling

November 13, 2015. Madison, FL. It’s been three weeks since Rays Little Fall. A broken arm , three broken ribs, three broken vertebrae, a partially collapsed lung, a concussion and two blood clots later, here I go again. For three weeks you’ve been picking up the slack for me. Last time I looked we were a hair shy of having enough miles to circumnavigate the globe. That’s over 24,000 miles. Holy shit that’s a lot of miles. Finally today I got my name on the board.

Don’t forget to keep logging your miles at Ride for Ray. If you are already on Strava, just join the group and your miles will be automatically added. We look forward to including you in our next video. Send pictures or video to bychopath13@gmail.com with a message about yourself and who you are and where you are from.

Peace, love and midwives

Ray

The Failed Divorce

November 11, 2015June 17, 2016 rayslittleride My Blog ALS, Cycling

November 10, 2015. Defuniak Springs, FL. Wait, it gets better. Before “Rays Little Fall” I had visited an emergency department once in my life. It was to get stitches. And before you ask, yes it was a biking accident. Yesterday I visited my third emergency department in three weeks and three states. The number of bullet holes in the Alabama state line sign would seem to suggest the best course of action would be to duck and keep pedaling. However, paying an impromptu visit to the Emergency Department here was probably the smartest thing I’ve let Rae make me do.

The power of the human mind for denial will never cease to amaze me. People are often incredulous at tales of women showing up in labor who didn’t even know they were pregnant. That doesn’t surprise me at all. If you don’t want something to be badly enough then you find a way to make it not so. I have spent the last year or so watching my left upper torso getting progressively smaller and my skeleton becoming more prominent as the muscle mass covering it diminishes. So imagine my surprise when my left arm and hand started to get bigger again. And bigger. We tried many things, elevating it, anti inflammatory meds, sling adjustments, sleeping with a pyramid of pillows stacked on top of me to keep my arm up. But every day my arm and hand became more swollen. Rae described my hand as looking like a glove that someone had filled to capacity with water. My skin even took on a reflective sheen. The possibility of a clot had been suggested by a friend who is a physician. But I just couldn’t deal with one more fucking problem and I’m a nurse so dependent edema it was going to be, damn it. Although I was starting to wonder where my knuckles had gone and why my fingers wouldn’t bend anymore. I hate taking off my wedding ring. But fortunately I switched it to my right hand in El Paso because at this point, if it was still on my left hand, either the ring or the finger would need cutting off.

I came to the United States on a fiancé visa. Rae and I had 90 days to get married or I would have to leave the country. Both of our parents were separating at the time after long marriages and we weren’t too sure about the point of this whole marriage thing. Ours was a marriage of convenience, so that I could get a green card. It wasn’t exactly billed as the most romantic event of the century and we even told people not to bring any gifts. Would the truth be known we had even set a date for the divorce one year later in 1984.

Did I mention that in one of my many previous lifetimes I was a jeweler? Before coming to the States I spent a month back in England. I wanted to make our wedding bands but didn’t want to spend too much money because a) I didn’t have any and b) as I said, this wasn’t exactly billed as the most romantic event of the century. So while in England I asked my divorced or separated family members if I could have their old wedding and engagement bands. I took them to one of the jewelry shops I used to work at and they let me melt them down into a bar. I rolled the bar out into one long band which I then turned into two gold rings. And voilá, two free wedding rings. As cheap as my intentions may have been, over time I have come to see the wedding ring as an external sign of an internal spiritual grace, a visible representation of an invisible bond that holds two people together–even when distance separates them. I always know that Rae is at the other end of the band on my finger.

We had just dropped off Daniel, Andi and Bill in Fairhope on the Eastern Mobile Bay coast and were headed for Pensacola. When on a whim Rae turned into the Fairhope hospital parking lot and said “lets see if they’ll see us.” I’m guessing she knew better than to ask if I wanted to go. After a few hours they finally took us back to an exam room. When the practitioner came in, before so much as laying a finger on me she just looked at my hand and said we need to get a sono to check blood flow to rule out a clot. To which I proceeded to tell her why it couldn’t be a clot because of x, y and z. And by the way, did I mention that I’m a nurse?

The sono tech spent about 30 seconds on my neck and forearm respectively and about 15 minutes on my upper arm. Rae asked if she could see any clots. To which the tech curtly replied “we’re not allowed to say anything.” Which is tech speak for “you’re fucked.” Technically speaking I was right. There wasn’t “a” clot. There were two. So now I can add DVT’s to my ever growing list of health issues. I’ll be on an anticoagulant for the next 6 months. But more importantly I’ll be on a trike in 48 hours. I just have to try not to do anything that might cause me to bleed for a while. My trike shipped from Easy Street Recumbents in Austin today. We rendezvous with it on the 12th in Tallahassee. My trike is the one in the box, not the rickshaw thingy in the picture. I think.

With each ED visit I also get a new arm brace. Actually, this is #4 including the one I got from the clinic in El Paso. This one covers my fingers. So if anyone asks how I am, I can say “I can’t see my fingers, so as far as I can tell everything’s fine.” From Tallahassee we will have 8 days left of riding to get to St Augustine. I’ve been looking at the roads as we’ve driven along. Some are narrow. Some have no shoulders. Some are quite busy although we seem to be past most of the logging trucks that filled the roads in Louisiana. I have thus far not been to an Emergency Department in Florida. Depending on when you are reading this you’ll know whether or not I made it to the Atlantic. I hate it when people know more about my future than I do.

A certain amount of denial is required for me to get back on a moving vehicle without seatbelts or airbags. I am supposed to keep my arm elevated to help reduce the swelling. I could put a pile of pillows on my lap on the trike to keep my arm up. That’s the good thing about a recumbent, I wouldn’t need too many pillows to raise my arm above the level of my heart. I might even strap a few pillows to my head too. There’s nothing that cries out “street cred” like riding a recumbent trike surrounded by pillows. This trike, like my Schwinn, is fully operational by the right hand. The hand that now bears my wedding ring.

Sometimes people ask me what is the secret to a long standing relationship. If I knew the answer to that I’d write a book. Relationships are such a crap shoot. Our eldest daughter is an incurable romantic. She once asked: “Dad, how long did you and mommy date for?” I thought for a while and responded “Oh, about 30 minutes.” “Euwww. Dad!” I’m guessing that wasn’t the response she was hoping for. I was going to add “it would have been less if I could have walked in a straight line” but thought better of it. We’re a one night stand that has lasted nearly 34 years. I don’t really recall if we actually decided not to bother getting divorced or just decided that marriage wasn’t so bad after all. Maybe we just stopped denying we loved one another.

The only advice I have to offer is learn to say sorry–and mean it. Beyond that I would just say treat yourself and each other with respect. When frustration and difficulty assail your relationship, as they will at one time or another, focus on what is right between you, not only on the part that seems wrong. Remind yourselves often of what brought you together (even if it was a brand of beer).

Peace, love and midwives

Ray

Ride for Ray video #7

November 9, 2015June 17, 2016 rayslittleride The Ride ALS, Cycling

November 8, 2015. Bayou La Batre, LA.

There are many things I could say about this video. Each video I make tends to take on its own personality based on the content submitted. Granted I edit the clips and put them together so I provide some of the narrative flow. However, the video clip contributions from family members and people I helped bring into the world helped make this video one of my favorites. Thanks again.

Last time I looked we were close to 20,000 miles. Don’t forget to keep logging your miles at Ride for Ray. If you are already on Strava, just join the group and your miles will be automatically added. We look forward to including you in our next video. Send pictures or video to bychopath13@gmail.com with a message about yourself and who you are and where you are from.

Peace, love and midwives

Ray

Ride for Ray video #6

November 8, 2015June 17, 2016 rayslittleride The Ride ALS, Cycling

November 7th, Bugalusa, LA. We are back east of the Mississippi. We picked up Bill, a neighbour, from Urbana who rode down on the City Of New Orleans to join us and ride. One of the original ideas behind the ride was to create lasting memories for those who rode with us and joined us along the way. But through the videos, so many people who would not have otherwise been able to, have been part of the ride and done a part to keep us rolling. I hope through the videos they will create a lasting connection to the ride.

Peace, love and midwives

Ray

Ride for Ray video #5

November 6, 2015June 17, 2016 rayslittleride The Ride ALS, Cycling

November 6th, Bunkie, LA. A lot of people have been inspired by what we are doing. But who I am exists within each and every one of us. I would not be here were it not for a small army of people. Everyone here, from start to finish, has played a part in this journey. The drivers, the riders (the hospital staff) the road angels who have put us up along the way. Who have cheered us on. Made us meals. Bought us meals. Worked on bikes on their days off. Networked to get us what we need. Rode miles when I could not (13,306 miles at last count). Donated money and supplies. The number of people probably runs into the thousands at this point. This has become so much bigger than any one person involved.

Peace, love and midwives

Ray

Learning to fly

November 5, 2015June 17, 2016 rayslittleride My Blog ALS, Cycling

November 4, 2015. Coldspring, TX. We are finally leaving Austin. The town and people were good to us. This morning we finalized a plan with Easy Street Recumbents and a trike is being built for me. There is a critical part for the one handed operation of the brakes that needs to be shipped from England (where the trikes are manufactured). This part will get to Austin on Monday then the trike will be sent to wherever we are. There is a learning curve to riding a recumbent but I’ll have time. I hear it is still possible to overturn and crash a recumbent trike but at least I’ll be a lot closer to the ground. Douglas Adams once observed “the knack of flying lies in learning to throw yourself at the ground and miss.” I have mastered the first part but the second part I’m having difficulties with.

As I’ve said, I have kept a journal for as long as I can remember. Some of them have been lost over the course of various moves around the world, but at this point, I have an unbroken record going back to the mid-’80s. It started out just documenting our travels. But eventually journaling became part of my post 24-hour-call coffee ritual. I never went to sleep after being on call. It always seemed like such a waste of a day. Instead I would leave the hospital and go to the coffee shop, sit down with a cappuccino and my journal, put Leonard on the iPod and gather my thoughts. One day out of the blue, Lisa asked me if she could have my journals when I was dead. I thought about this request for a while because if they ever made a movie of my journals it would not be PG-13. I asked her why she wanted them. She said, “so I can know you better.” Then I thought, well, I’ll be dead anyway so I said, “sure” and didn’t give it much more thought.

I don’t do “still” very well. Even when I’m stationary I’m pacing. I can make people very nervous. The thought of waiting a week for my new trike seems like an eternity to me. I have never been this sedentary for this long a period of time. Ever. However, that I will be able to finish the ride at all is a blessing. Well, let me rephrase that. That I will be able to ride at all is a blessing. The finishing part I shall believe when and if it happens. Rae is excited about accessorizing the trike. Since the trike rides low, I need a flag to make myself visible. My “Rays Little Ride” jersey was cut off me in the ambulance. Quickly and skillfully by a paramedic before I could protest. But we still have its tatters. This will now become our freak flag and you better believe we’re gonna let it fly.

In 2013 while in Amsterdam, I visited the Anne Frank house. The home of probably one of the most celebrated journals of all time. At the end of the tour, there were video screens showing interviews with the surviving members of the Frank family. I sat and watched one of her father, Otto Frank. He said that he and his daughter had lived in very close quarters for many years and he thought he knew her well. But when he was given the journals to read after the war, he was shocked at the depth and insight that his daughter had into life. This led him to conclude that no parent truly knows their children. This got me thinking about the reasoning behind Lisa’s request for my diaries. Not really knowing those you are closest to is something that goes both ways. So for Hanukkah that year I gave Lisa one of my journals. I thought I’d start at the beginning and gave her the one recounting her birth. I said that when you’re done with that one, return it and I’ll give you another and we can treat it like a library. I told her that she shouldn’t have to wait till I’m dead to know me. But of course, this wasn’t the one she wanted. She wanted the ones written during her teen years. Those were some tumultuous times. I hoped I hadn’t written anything too incriminating but handed over the relevant tomes as per her request.

There are many faces we wear. Amongst them there’s the person we are at work. There’s the person we are with our family. And there’s the person we are when we are completely alone. If anyone knows who I am alone better than even me it’s Rae. Sometimes I wonder why I bother talking because even if I say what I think I should say, Rae will ignore what I said and do what she knows I really want to but didn’t say. As annoying as that can be at times, isn’t that the point of it all? To find that someone who knows you better than you yourself. There are billions of people on this planet laboring in seeming anonymity. Yet if you find that one person to notice you. To witness your life. To validate your existence. Isn’t that the point of it all? When two become so much greater than the sum of the parts. I don’t wish to diminish the value of someone who has not found their “one” but for me this is the meaning of life. I could not have gotten this new trike without Rae. I can talk to people who are used to my voice on the phone, if I use a headset, and they can understand most of what I say. When I speak on the phone with someone that I don’t know, there is generally a pause . . . then they politely bemoan the quality of the connection “I think the signal is breaking up.” Sadly, yes the signal is breaking up but it’s the signal coming from the motor cortex of my brain, not the cellular network. Rae has called recumbent dealers in England multiple times, recumbent dealers in Texas, California and Wisconsin because she knows it’s the only thing that I want to do. If I were Rae I would be freaking the fuck out at the prospect of me getting back on a bike. But, even before I dared voice it myself Rae was thinking about it. When I get back on a bike again it will be as much because of her love as it will be because of my pigheadedness.

One day I received a text from Lisa. She had been reading my journal and wanted more information about something. She had taken a picture of the page in question in my journal and sent it to me. It was about the night of her junior prom in 2006. I had taken her to the event but she didn’t want me to drop her off too close in case anyone saw that her dad was bringing her. As I drove away she was holding up her dress and walking awkwardly across the parking lot in high heels to meet her date. I must have gone somewhere to have coffee and write in my journal because I wrote, “I bet when I come to pick her up, she’ll be sitting outside alone.” But this was many years ago, and I hadn’t given it anymore thought until Lisa texted that day.

“How did you know I would be alone outside?”

“Because that’s where I would have been,” I responded.

“I love you, Dad.”

Peace, love and midwives

Ray

Ride for Ray video #4

November 3, 2015June 17, 2016 rayslittleride The Ride ALS, Cycling

November 2nd, Austin, TX. Had a dream last night. Don’t remember too much about it but I was riding and I got a flat. I can change a tire one handed but in the dream I used both hands. All my fingers worked. I didn’t even need a tire lever, just used my hands to get the tire off. I recall feeling pleased with myself at how easy it was. But then I woke up and the glow of the small victory of my dreams dissipated in the reality of the effort required to simply roll over in bed.

Hope can be a very tenuous thing.

On the day of the accident, as I was lifted into the ambulance I was still a little disoriented. But as the doors closed I lay back on the stretcher and believed that I would never ride a bike again. All I could think of was that I had let everyone down. That was 11 days ago. I rode a bike today for the first time since the accident on October 22nd. We don’t own it yet but we’re hatching plans. It’s not quite what I imagined I would ride but I think if nothing else I’ve resolved the potential issue of flying over the handlebars.

I have never been to St Augustine, Florida, and have no idea what it looks like. Yet, the images I have had in my head of arriving there have taken on so many different iterations over the last 10 months. Walking, riding, wheelchair, not at all. At this point I know better than to think that I might actually make it. But I’m going to give it everything I have left. There is an army of people out there riding for me. Even Rae finally got in on the act today. The whole community, cycling and non cycling alike has come together for this cause. If they can do it, I can. It’s time to kick some ALS.

Peace, love and midwives

Ray

Ride for Ray Video #3

November 1, 2015June 17, 2016 rayslittleride The Ride ALS, Cycling

October 31st. Austin, TX. I did not grow up roaming the streets of London at night, vandalizing public transportation and dreaming of escaping to America to becoming a midwife. I know that may be hard for some of you to believe. What I wanted to be was an astronaut. I wanted to be the youngest person in space. There were no books at the local library about space and space exploration that I had not read. I was devastated when the show “Lost In Space” came on and I saw that Will Robinson had beaten me to it.

My dream did not end there but it took a dent. My dad made light of my ambition telling everyone I was going to be the first dustman (garbage collector) on the moon but I remained undaunted. I should mention that to his credit, some 40 years later, he did apologize.

For as long as I can remember, my reach has exceeded my grasp.

We’re still on the road winding our way east. And by winding I mean winding. Once we get to Austin we’re going to take a break. They have an MDA Clinic and I have some body parts that need to be looked at. Not to mention there is some serious trick or treating to be done.

The initial notion behind “Ride for Ray” was to make up the 2,500 miles or so that I could no longer do and we would move on down the road as others rode the miles. But we have already exceeded that goal. Someone suggested “ride around the world” (24,859 miles). Recently a friend from the Minneapolis biking community posted a video about accumulating enough miles to fly me to the moon. That’s 238,900 miles. It got me thinking about a lot of things. It may be too late to become a dustman but not to fly to the moon.

Don’t forget to log your miles at Ride for Ray. We look forward to including you in our next video. Send pictures or video to bychopath13@gmail.com with a message about yourself and who you are and where you are from.

Peace, love and midwives

Ray