Alright! Someone finally asked why I hadn’t written about Leonard Cohen yet. Well actually it wasn’t so much a question as it was a comment of surprise that I hadn’t written about him yet (thank you Rachel). But close enough. He may not be your cup of PG Tips, but if you’re coming along for the ride you need to know about me and Leonard. He has always been on my radar; I still have some of his stuff on vinyl. Not to mention a functional turntable to play it on. But the last few years I had rediscovered the depth of his back catalogue, and it was on fairly constant rotation in our house. Then with the diagnosis his music just expanded to fill all the available space in my soul:
Going home without my sorrow
Going home sometime tomorrow
Going home to where it’s better
– “Going Home”
One day while I was still working I’d had a particularly rough day. Over lunch I had called to confirm the time for an appointment I thought I had with a speech therapist that was coming up in a few days. The receptionist could find no record of it, but offered to give me the next available appointment which was another two weeks away. My voice was beginning to fade and I was greatly anticipating this visit. This was fairly early in the process, and I still clung to the hope that something could help at least slow down that particular loss of function. But hope can be a very tenuous thing. When the receptionist said she couldn’t find any record of the appointment, I just lost it. I became the angry patient railing against a powerless receptionist, about an uncaring system. It wasn’t one of my finest moments. When I got home Rae made the mistake of asking how my day had been. Most of the time I’m fine, but every so often the magnitude of what is going on hits me like a ton of bricks and overwhelms me. This was such a time and I just broke down crying. Rae held me and after a while said quietly “I wish I had words.”
I’m guessing Rae has moments like this too, although I have not witnessed any breakdowns on her part. Which is probably a good thing. It means we’re coordinating things and not having breakdowns at the same time. I wish I had words, too. That’s the thing, I’m the one going through it and I don’t have the words. But Leonard. Man, does Leonard have the words. If you have five minutes watch this video. See it as part of the blog:
If it be your will
That I speak no more
And my voice be still
As it was before
– “If It Be Your Will”
Ian, an old friend from way back, will be joining us on the ride. This is far from the first time we have ridden together. We once rode the Lewis and Clark trail together to raise funds for two local charity organizations. The memory of that ride is never far from my mind as we prepare for this one.
Tuesday, May 11, 2004. Williston North Dakota. We woke up to hail, freezing rain and 40 mph winds out of the direction that we had to ride in. Not to mention a 20 degree wind chill. The weather had been going from bad to worse. This ride was self supported, so we were carrying a minimal amount of gear. So naturally all we had to wear were riding shorts and short sleeve jerseys. The hail stung my exposed legs and arms as we went for breakfast. People could tell we were not from these here parts. I think it was the flip flops that gave us away. We had to get some warm clothes, but this was North Dakota before the oil boom. The nearest bike store was in Bismarck more than 200 miles away. Our only option was a local sporting goods store. After decking ourselves out in warm, dry clothes we finally rolled out of Williston around 10 o’clock. This is how, in one of those amusing quirks of fate, I found myself (Mr. Vegetarian) riding around the Badlands of North Dakota fully decked out in GoreTex, camouflage hunting apparel.
We thought we would ride South and deal with a cross wind instead of East into the brutal headwind. Not the best idea. Staying on the road was a full time job. I’m sure the scenery is beautiful, but we couldn’t see more than a half mile in any direction. We would struggle to the top of a hill and see . . . another hill. The entire day was an uphill struggle (literally and figuratively). Eventually we had to turn East and ride into the wind. We made it Watford City. We would have gone further, but it was 60 miles of wind, rain, hills, and Badlands to the next town. In 4 hours we had managed 47 miles although arguably zero miles would have been a wiser choice. Each day we were getting diminishing returns for our effort. When we found a place to stay I made the mistake of checking the forecast for the next day. The forecast called for snow. I’m convinced that if you watch The Weather Channel long enough you will start to believe the apocalypse is at hand. The receptionist at the motel mentioned that tomorrow would be his 20th wedding anniversary. And the last time it had snowed on that day was 20 years ago on their wedding day. As bad as this day had been, the following day was worse. A lot worse. An entire year of meticulous planning and extensive training was thoroughly and efficiently undone in 48 hours by Mother Nature. Based on this experience I’d say 90% of everything that is going to happen in the four weeks that we’re on the road traversing the continent is beyond our control. Ian thinks I’m being optimistic.
Well my friends are gone and my hair is grey
I ache in the places where I used to play
– “Tower Of Song”
Our eldest daughter Lisa and her family live with us. She hates Leonard Cohen. Not because she hates Leonard Cohen, but I think because in her mind his music defines my diagnosis. One morning I was brushing my teeth and had his album “Old Ideas” playing on my iPhone. Lisa groaned from her bedroom, “Really, Dad? This early in the morning?” It was as if I’d been caught sneaking a drink before breakfast. She may claim to hate him, but she knows his every song from the first note. Lisa’s problem is in part that the music “is so damn depressing.” But if you listen, no matter how bleak the landscapes he paints are he always infuses them with a glimmer of hope and optimism. Sometimes it’s obvious and sometimes you have to dig deep to find it, but it’s there. I think this is the root of my infatuation with his music and words. That sense of optimism in the face of overwhelming odds often told through a lens of self deprecating humor. I keep waiting for my obsession with his music to subside, but if anything it grows with each day. Sorry, Lisa.
The sands of time were falling
from your fingers and your thumb,
and you were waiting
for the miracle, for the miracle to come
– “Waiting For The Miracle”
Talking to someone about their illness can be such an awkward thing. Do you just ask or do you assume that if they wanted to talk about it they would do so without being prompted. For my part I prefer that if you are curious about how I’m doing you just ask rather than wonder. The answer you get may be more than you bargained for, but that’s the risk you take. The other day someone asked me to talk about my battle with ALS. It’s a struggle, yes, but battle? No. To me the word battle implies an engagement in which the outcome has yet to be decided. With ALS the outcome is not in question. Yes, there are daily struggles as you adapt your life, your environment, your relationships, to ever increasing limitations. Struggles as you stubbornly try to cling to a certain ability while your brain softly whispers, “Let it go, Ray. Just let it go.” I don’t see my relationship with the disease as a battle; it’s more like I’m being forced to develop an intensely intimate relationship with someone that I wish I’d never met.
You win a while, and then it’s done –
Your little winning streak.
And summoned now to deal
With your invincible defeat,
You live your life as if it’s real,
A Thousand Kisses Deep.
– “A Thousand Kisses Deep”
This world and its troubles are not ones that submit easily to solutions. It seems that humans have always faced the same challenges. The circumstances may change, but the problems we face today are in many ways the same as the problems our ancestors faced. There will always be good and bad, beauty and suffering, life and death. All the contradictions that continually surround us, sometimes simultaneously. I have heard it said that time heals all wounds. It does not. Life is about what we do with these wounds. It’s not about “getting over it.” It’s about how we learn to process these things and move forward with them as part of who we are instead of letting them hold us back. As Rae once said about another subject but I think it applies here also: “we have to embrace the beauty and process the suffering and hopefully come out at a better place.” This is what the words and music of Leonard Cohen do for me. Illuminating the darkness with hope. Not hope that things will get better, but hope that where I’m going isn’t as dark as I imagine it to be.
Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.
I am now completely packed. The bag I will be living out of for the next four to five weeks is next to the bed. I checked the forecast for some of the places that we’ll be going through in the first week. It is currently 97 degrees in Phoenix, AZ with 0% chance of precipitation. I have packed long pants, sleeves and a raincoat.
So come, my friends, be not afraid.
We are so lightly here.
It is in love that we are made;
In love we disappear.
– “Boogie Street”
Each letter in the Hebrew alphabet has a corresponding numerical value. Alef is 1, Beit is 2, Gimel is 3 and so on. The letters Chet and Yod have the value of 8 and 10 respectively. These two letters spell the word “Chai” which is the Hebrew word for life. We leave on the 18th of October. The word Chai has a combined numeric value of 18. I will take this as a good omen.
Peace, love and midwives
P.S. And even though it all went wrong
I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah
18 thoughts on “Me and Leonard”
Your blog has proven to be such a touchstone for me…thank you for the gift…
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I just wanted to let you know that I Iove reading these blogs Ray. I’ll be thinking about you during your little ride.
Peace, love & epidemiology
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Holy Moly Ray. I’ve never met you, I am Tori’s sister so I know that it was she who asked about Leonard. Your writings are beautifully written. Thank you so much for sharing.
I just have to say THANK YOU for making this blog public. I am fed by your reflections and your eloquence.
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I just have to THANK YOU for making this blog public. I am fed by your reflections and your eloquence.
Thanks Mary for you kind words
Ray, Good luck to all of you on your ride. I will be following your ride through the blogs.
Chazak, Chazak, V’nitchazeik. I feel so proud to know you.
Engaging brilliance. Thank you. Good luck and thinking of you all on this journey!
Matt,Simon,Miles,Walt and I want to wish you Good Luck on your amazing bike ride. We just can’t thank you enough for everything that you did for our family from delivering our first baby (Simon) and answering any and all questions for what to expect with our second and third. I remember coming in for one of our appointments for baby (Walt) and my age was 39. I was very stressed from having to take a the test’s that are recommend for someone at my age and hearing all the things they check for and what could go wrong with our baby. But you would come in and talk to Matt and I and ease my fears and make me not second guess myself why i decided to have another baby at my age. We are so happy that you were part of that life changing experience with all three boys. We appreciated your kind caring ways when we were at our baby appointments and really enjoyed talking about music. Again Good Luck! We’ll be thinking of you and can’t wait to see pictures of your adventure.
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I am certain that you don’t remember me…it was after all, 18 years ago when I had my son at Carle and you were one of the nurses that took care of me. That is not the right way to put it; you were the kindest, most caring and patient of the nurses, and I still speak of you in that regard. You may not know this, but other women that I know remember that about you also! Thank you so much. Best of luck in this huge adventure. I will follow along.
Thank you again,
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My Father rode his bicycle across the northern route of US. He was 76 and it was on his bucket list. He rode with a group of much younger riders,and they had to carry all they needed with them. They took turns in groups of twos to p u r chase food and prepare food. He slept on the ground in a one person tent. He said his biggest struggle was the Rocky Mountains. The group rode on back roads, and every evening if he could he would buy himself and some neighborhood child an ice cream. His trip rode through Illinois and Indiana and I met him to cheer him on. He was so proud to dip his wheels in both oceans.
May God bless you with a safe trip with success. Nothing is impossible.
Am honored to be following in his footsteps
Ray, you are such an great role model. I believe that with every fiber of my being. You are wise, kind, inspiring, and just an all around awesome human being. I’m so very blessed to have met you and had you as my midwife. You didn’t get to deliver my son, but I had you for most of my appointments. I just want to thank you again for accepting me as a patient last minute when I know you didn’t have too, for being there for me every step of the way, for explaining things to me in such a calm and cool manor (your accent is literally the best), for sharing your humor and some stories about your life, for being non judgemental, and just in general for being you (: God Bless you and good luck on this journey of yours!
I’m so glad I found your little corner of cyberspace. Keep writing, and I’ll keep reading.
This is my favorite Leonard Cohen song:
Now in Vienna there’s ten pretty women
There’s a shoulder where Death comes to cry
There’s a lobby with nine hundred windows
There’s a tree where the doves go to die
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Hi and welcome. Asking me to choose a favorite LC tune would be like asking me to pick a favorite child. I couldn’t do it
Thanks for writing Ray. Leonard Cohen was my dad’s favorite. It played 24-7 his last 3 weeks at home. I’m glad you take comfort in him too. Peace and good travels to you.
God bless you and keep you safe on your journey. You delivered my first grandchild. My daughter could not have done it without you. You have made a difference and continue to do so with your ALS journey.
Ray you absolutely must check out the Deanna Protocol for ALS. I also was diagnosed with ALS in 2014. But I started this protocol and I am doing great. It is a proven therapy for ALS, it really works! It replaces the energy lost in the mitochondria. Your doctors will not tell you about it because it’s natural elements your body no longer makes. I beg you to get on it as soon as possible, it can stop the progression where you are at right now. Go to winningthefight.org or Google Deanna Protocol. This disease no longer is a death sentence. feel free to contact me with questions via email God Bless