A Life In The Day

Rae and I never intended to stay in Urbana. After working and saving for three years, in July of 1986 we set off to travel the world and find the perfect place to live. During our travels we had just one rule. And that was that we could never buy any return tickets. This seemed like a great idea at the time. It kept us exploring new places. However, one major drawback to this grand idea, which in retrospect seems so obvious, was that after three years of traveling we had completely circumnavigated the globe and ended up right back where we started. Although the significance of this eluded me at the time. As far as I was concerened I had been condemned to live in Urbana.

August 21, 1986. Everett WA. When we set off on our travels we had no idea how long we would be gone. We had saved a certain amount of money and planned to travel till it ran out. Given our finite resources we would often go to extraordinary lengths to avoid having to pay for spending the night somewhere. Our two person Jansport tent had sprung a leak around the window and we happened to be near the manufacture in Everett so we took it in for repairs. They said there would be no problem and we could pick it up the following day. We asked if there was anywhere around we could spend the night given that we wouldn’t have a tent. The woman mentioned a small one room lodge in the nearby back country that had a 360 degree view of the mountains. It was maintained by a local alpine club and was well worth the hike if we were up to it. She didn’t think anyone would be using it at this time of year and gave us directions to the road to the trailhead. She may have mentioned something about distance but all I heard was “free” and blocked out everything else.

So there we were driving a small Mazda GLC on a rutted mountain trail and after we had bottomed out a few times it became obvious we were ill equipped for the terrain and considered turning back. Unfortunately the road was too narrow to turn the car around. I thought about asking Rae to get out and walk so that the car wouldn’t be so heavy but intuitively knew that this might be something I might come to regret for approximately the rest of my life. We men are smart that way. Our only options were reversing back down the mountain or forging on and hoping we didn’t lose any critical parts off the bottom of the car. So on we went. Eventually we arrived at the trailhead and by some miracle the exhaust was still attached. The woman in the Jansport office had told us that once we hiked above the trees we would be able to see the hut. In retrospect it was either a tremendous leap of faith or the height of stupidity. We had no map, no tent, no idea how far we would be going, for some reason took no food and went hiking into the Cascades. But until recently that was how Rae and I did everything. We didn’t plan. We just did.sc0024e164

When we left on our grand adventure we had a wish list of places we thought it might be great to see, like the Taj Mahal, Kathmandu or the Pyramids for instance. The sort of places that have a place in our collective consciousness. You anticipate ahead of time that these places will be magical by their reputation. But often times, by far the most magical places you find are those you stumble upon quite accidentally, because you’re so damn cheap. Over the course of our travels there were far more of the latter than the former. The woman from the Jansport store was right of course. Once we got above the trees we saw a speck on a ridge which thankfully turned out to be the lodge.  The interior of the lodge was “rustic” to say the least. But of course none of that mattered because it had a roof.  And….. even more importantly, we found a can of sardines on a shelf. And while we hadn’t brought much else, we did bring my Swiss Army knife and were able to access the contents of the can. We briefly pondered the thought that the sardines might have been put there purposefully by someone who would be coming back later. But that didn’t stop us from devouring them. Then we just chilled in awe of our surroundings, not quite believing our good fortune. Prior to this we had been sleeping in the back of the car in rest stops. Now we were in the mountains watching the sun set over the Pacific.sc0024afcc

All night the wind howled around our lofty perch. There’s nothing quite like the sound of the elements at your ear when you are dry and warm inside. Another thing we didn’t do on a regular basis while traveling was bathe. We would occasionally sneak into a campsite and use their showers but that was the extent of it. Now we had the whole outdoors to ourselves. And the water was, shall we say, invigorating. It was a magical 24 hours and my memories of that day are as clear as the water we bathed in. I dare say if we’d had any food we would have stayed longer. But we had to get back to Everett to pick up our tent. And that night we were again sleeping in the back of the car by the roadside.sc001c2f15

“Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those with ALS survive for 10 or more years.” Everyone who has ever been diagnosed with ALS knows this stat. Some sources say 2-4 years but you get the point. This shit doesn’t mess around. Initially you ponder, well, you could be in the “10 years or more” group. But then you have to consider do you want it to go fast or slow? It’s so hard to know what to wish for. I doubt that anyone thinks “hey, maybe I’ll be in the two year group.” At our most recent visit with the neurologist Rae asked the doctor if he thought the disease was moving fast. He paused for a moment before answering. Although I have no broad knowledge base to draw from I already knew the answer to the question. I think Rae did too. I have even been asked by friends if I thought it seemed to have started moving faster. That isn’t the sort of question people ask just to make casual chit-chat. Eventually the doctor said he has seen it move faster but yes in my case it does appear to be gaining ground pretty fast. In its strictest sense this sucks. But on a practical level there are some advantages to having this knowledge. Above all I want Rae to be able to afford to stay in the house after I’m gone. So I don’t want to spend a huge amount of money remodeling the house if I’m not going to get much use out of it. Any modifications we make have to have a broader application beyond getting me in the door and to and from the bloody loo.

February 1st, 2016. Urbana, IL. Warmed up enough for me to go out for a 40 mile ride on the trike today. When we went on the cross country bike ride last year I signed up for Strava (a website and mobile app used to track athletic activity via GPS) so that people could follow our progress each day. If you signed up to follow me you would get a notification every time I logged a ride. This was all very well when we were doing 100 miles a day and averaging 19-20 m.p.h. But things have changed a tad since then. Today I rode 40 miles and I’m not even going to reveal my average speed. If you’re following on Strava you know already. I have been considering deactivating the account because, to be honest, I’m embarrassed by some of the stats. But our good friend Ian (who came on the ride with us) talked me out of it. He said that he enjoyed getting periodic notifications of my cycling activities. It saved him from having to check the obituaries.IMG_9805

People have a variety of reactions when I try to talk.  Sometimes they will stare intensely at my lips, moving their own lips, mouthing what they think I’m saying. Some people just nod and smile obliviously. Some people just talk continuously in the hope I won’t try to say anything. Sophia though is another thing altogether. It’s as if guessing what I’m saying is her task on a game show. And the clock is ticking and she has a limited amount of time. It usually goes something like this. Me: “phlugh blugh flung brah.” Sophia: “You want to eat? No, you want tea? You want, umm, has two syllables, sounds like. Sounds like coffee? You want food?” All the while getting more animated and excited with each guess. Then with a look of smug self satisfaction she’ll announce “Got it! You want to come with me to the mall.”  Then for good measure will add “Damn, I’m good.” This afternoon at the mall we stopped in the food court for a Pepsi and some ice cream. Then between bites Sophia looked up at me and said “you would have hated getting old anyway.” This is an astute but harsh observation for your own daughter to have to make. She is right of course. As a nurse I have seen the toll that the prolonged mental and physical decline of a loved one can take on a family. One by one, faculties leave, till its hard to remember who the person once was. And so much of what happens towards the end is taken from our control.IMG_9762

Is this what I wanted? Obviously not. I want to be there for our kids, I want our grandson to have memories of me. I would see old couples walking in the park and think that would be me and Rae one day. But such things we do not get to choose. However, as I said before, it’s often the things we don’t plan that turn out to be the most suprising. I think early on I may have said I had an admiration for the purity of ALS. How for all our knowledge of the human body there is so little we know about this disease. I think I may have even been pissed off that there was so little the medical establishment could offer me in the way of treatment. But once you get over that you realize how much easier it is to plan your life when you don’t have options. Within the parameters of the ever increasing speed the disease is moving I have been presented with the opportunity to be the author of my own final chapter. And as George once sang “Nothing in this life that I’ve been trying, could equal or surpass the art of dying.”IMG_9739

When we left on our travels I said that we went looking for the perfect place to live. We now live two blocks away from that house that we left some thirty years ago. There are no mountains in our back yard as we had once imagined there might be. No beach down the street or house on a hill surrounded by acres of greenery. But there are people, family and friends, and while it took us some time to figure this out, that’s the most important thing in the world. And whenever I lament my inability to escape from Urbana I think of one of my favorite quotes from a poem by T.S. Elliot:

“We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.”
 .
Peace, love and midwives

Ray

21 thoughts on “A Life In The Day

  1. I am a friend of Jan Stewart and that is how I started following your story and journey. I live in Illinois about one hour south from where you live. Your sharing of your journey has made an impact on me. I appreciate it and want you to know it makes a difference to those that read it. Thinking of you and yours.

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  2. The first thing that came to mind when reading this was The Wizard of Oz.
    “If I ever go looking for my heart’s desire again, I won’t look any further than my own back yard. Because if it isn’t there, I never really lost it to begin with.” -Frank L Baum, The Wonderful Wizard of Oz

    Your tales and reflections of your life’s journeys and your accounts of the sense of feeling your own mortality remind me so much of my grandfather.
    He was diagnosed with pancreatic cancer right around his 94th birthday and passed 4 months later. “They” had decided not to seek extensive treatment most likely due to his advanced age. I was 17 and set to travel Europe in 3 months with a national band program and I was pondering cancelling so I wouldn’t lose any time with him. He not only insisted I go but I’m pretty sure he funded most of my trip.
    I arrived back state side after a month to find out he’d broken his hip and was pretty much expected to be hospitalized for the remainder of his life. I spent as much time as I could with him in that last month he had. Sometimes we just sat in silence as he grimaced at his frustration with his waning health and no appetite (grandpa liked food, rich non hospital food). Other times he talked. I didn’t know what to say or ask but he seemed to know what to talk about. He recounted his childhood in a very German area of Minnesota during WWI. He talked about his antics on the farm he was raised. He talked about all the things he’d seen invented in his near century on Earth. I learned more about him in those final weeks than I had ever thought to even ask about in my 17 years. On my last day at the hospital with him, he looked out the window and so peacefully said “I’m not afraid you know. I’ve lived a good life. A long life. I’ve seen a lot. No. I’m not afraid.”
    Your blog and writing will serve as a wonderful memoir for those who may not know what to ask or may not be able to ask yet (like your grandchildren). And while you don’t have an expiration date stamped on your heel, knowing the speed of the enemy your facing may be a steady port in the storm if not for you, then for those around you.
    I’m wishing you the best Ray. Thank you for sharing your stories with us.

    Liked by 1 person

  3. Oh, Ray. You WILL always be here for Rae, your kids, and your grandkids <3. You were already remarkable BEFORE ALS. Don't ever forget that. Reading about the life you live is amazing. I'm a bit jealous:). Adventure, freedom, family, love. What a Ride indeed!!!

    Your friend,

    Tosha

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  4. What a blessing to have the pictures from your favorite memories with Rae. I loved reading this and felt as if I could hear Sophia playing her “game”. ❤

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  5. I ‘escaped’ Urbana 15 years ago, having moved there for a year and stayed for 13 and the birth of three kids. As it happens, Friday we hope to close on a house for Ben on Green Street. We ended up with mountains in the front yard, but would trade it in a heartbeat to be among your more proximate family and friends.

    Mark in North Bend

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  6. Thought I should say THANKS for sharing your memories and your insight. I’ve been “following” your blogs for a while now. Today’s was particularly powerful, funny, sad, uplifting, hopeless, hopeful. You are an inspiration. Sending hugs to you, Rae and your family.
    —Ellen L (from your dancing days in Savoy)

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  7. I love your writing Ray. It is so beautiful and full of life and living. I don’t know you as well as I would like, but even before ALS you were someone I admired.
    I am reading a very interesting and inspiring book called “A Year to Live” by Stephen Levine. Your writing resonates so much my friend. One of my favorite movies “Scenes From the Second Floor” has a line in it I like to quote-“It’s not easy being human. All I want to do is put a little food on the table and have some fun”
    I bet those sardines rank right up there as one of the best!”
    Love you bro thanks

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  8. Ray,
    Your writings are very moving, funny, sad, but very wonderful to read. Your family is very lucky to have you and I feel fortunate to have met you! Keep writing!
    Carla Milazzo

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    • A word from a previously silent partner in your
      adVENTURE. I ‘VE KNOWN YOU SINCE LONG BEFORE YOUR C URRENT FAME AND I
      WANT TO SHOUT TO ALL AND EVERY ONE OF. YOU. HE’S MY SUM-IN-LAW AND I’VE KNOWN AND RECOGNIZED YOUR QUALITIES FOR OVER FIFTY YEARS

      BELIEVE IT OR NOT, YOU HAVE RIPENED into a man beyond expectation.How lucky we are to

      have YOU. If my back didn’t huRT I’D WRITE SO MUCHMORE. MAYBE LATER. LOVE. MUM-IN-LAW.

      AND YES, SOPHIA IS ONE OF YOUR MANY DELIGHTFUL CREATIONS BUT YOU HAAVE BLESSED
      ME WITH ALMOST MORE THAN I COULD COUNT. THANKS.

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  9. We have been following your blogs and have really enjoyed your writing and philosophical muses, you are certainly leaving something of great value as a remembrance for your family. Guess you couldn’t do the Fish Pie any more!
    Norma and David
    xx

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  10. First I want to say you’re an amazing midwife! You dealt with me from 2012 until I was blessed with the opportunity to be one of your patients on your last day at Carle in 2015. Through 3 pregnancies you guided and encouraged me and answered my questions and eased my fears. Sad you were never the midwife on call when my body decided to eject my little humans. Anyway, you are an amazing man and have an even more amazing family! I have thoroughly enjoyed reading this blog. It has given me a glimpse into the person I thought I had gotten to know through regular visits on the 4th floor of Carle, but in fact had no idea. I know you have moved on from this earth physically. But I feel as of your wisdom and humor was far too valuable to have left. May you rest in peace Ray.
    Until we meet again, Angela R.

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