Susan Leslie: Speech at Fare Thee Well

Susan Leslie: Speech at Fare Thee Well

Shep, I love the details of how we met and thought I’d share it for those who may not know. Shep and I met on a dating app. One statement in his profile said he was looking for “a conversation that would go on forever.” Since that’s what I was looking for, too, I sent a ‘like’. Awhile later, I saw a question from Shep under one of my pics. The picture was of me standing beside a painting of a famous Winnipeg singer and the question was, “Who dat?’ I thought, hmm, this could be fun, so I answered, “I’ll give you a hint. He’s from Winnipeg,” to which Shep replied, “My mother is from Winnipeg but I don’t think it’s her. I give up.” I said, “Come on, take one more try, I’m sure you can Guess Who?” and Shep responded, “I’ll never admit to anyone I didn’t get that.” I laughed, and I’m sure Burton Cummings would’ve laughed too.

We chatted on the dating app, moved to personal emails and, after a month of interesting exchanges, I suggested a Zoom coffee. Shep missed the ‘Zoom’ part and suggested a number of coffee places in Seattle. I pointed out that I was a Canadian living in Canada and he said, “I knew you were Canadian but I didn’t know you were that Canadian.” I responded with words to the effect: “Acknowledging the potential futility of a long-distance situation, we could still have a coffee over Zoom, just for fun.” Little did I know I’d said the magic word – “fun.”

And, boy, have we had fun. But more on that in a minute.

We Zoomed for a month and I found him confident, charming, accomplished and highly intelligent and yet very down to earth. And quite hilarious. Not to mention, having more than a passing resemblance to the Silver Fox, Richard Gere, my celebrity crush. When he suggested coming to Victoria, I said yes! He set the date for about a month later and we continued our fun Zooming. But two days before he was to arrive, I got an unscheduled call. He told me he had just been diagnosed with ALS. It was heartbreaking. There were tears. I said come anyway and he said okay. So around three months after “Who dat?,” we met in person.

Funny thing, when he got here, we barely talked about ALS at all. We ran around Victoria having a blast. A roof top lunch, a vegan dinner, Deadpool and Wolverine at the theatre (a unanimous choice), Hermann’s Jazz club, and a memorable walk around the harbour. The main thing for me is good one-on-one conversation and, clearly, he was a master.

I knew pretty quick that Shep was an extraordinary person and I decided I didn’t want ALS to determine our fate. I wanted to date and see where it went, just like any other two people. I guess he felt the same way because he didn’t break it off with me either. And so began a year and a half of trips back and forth between Victoria and Seattle.

And now to the fun.

Is there anything more fun than falling in love with a fantastic person and having them fall in love with you? We were different – he an extrovert, me an introvert. When I said, “Opposites attract,” he said “Opposites inspire,” and I began to perceive his enlightening world view. When he started to share his music, I realized how much I’d missed and soaked in as much of his knowledge and expansive tastes as I could. When we compared notes on the many films and shows we’d both seen, I enjoyed how our points of disagreement became lively and interesting discussions. When he introduced me to his family and friends, I was touched by the essential goodness of each of them and by the overflowing love they had for him. And when he revealed his steadfast optimism for the human species, I rejoiced in the discovery of a kindred spirit.

Time has flown. So many beautiful memories, Shep, like reintroducing me to the symphony, the spectacular Seattle Art Gallery (okay, Museum!), a fabulous wedding in Puerto Rico, my first Passover, a wonderful Thanksgiving, the Friday coffee klatch, two live Mariners games, Battlestar Galactica, password, knitting, my second batch of latkes, movie nights, t.v. sports, all our unofficial music nights and the last official one. You turned me into a Dead Head, you turned me onto Bill Evans and, when I heard the Beatles Anthology Volume 2, I felt like I’d heard them for the first time. And there has been so much more.

How fabulous, too, that so many of these experiences have been shared with your amazing collection of family and friends. You and they have broadened my mind, my heart and my world. And though there are too many to name – look around this house! – I am so grateful to each of them for walking the path with you, and with me, giving support, company, laughter and kindness.

The best part of this journey, though, has been just being around you. In your safe, joyful, wise, whole, accepting, compassionate, knowledgeable, interesting and fun company. We connected, you and I. On many levels. We fell in sync. We opened our hearts. We fell deeper and deeper. Our love blossomed.

I told you about the exercise I once did where I identified the things in my childhood that I needed and didn’t get – gentleness, respect, interest, attention and encouragement. You gave me all of those things, and then some. Your love was exactly the love I have needed for so long. It reached the depths of my soul and something that was clenched there, that I didn’t even know was there, released. And now I feel lighter, more at peace, more free. Thank you for that. Thank you for being the amazing human you are.

It was naïve of me to think ALS could stay in the background. It didn’t. I had great hopes early on. They said a cure was within 5 years. I thought you could make it. When it did eventually budge its way into prominence, our bond, already strong, was forged forever in the fire of its challenges. The road from hope to acceptance was painful but it never stopped us from living and loving to our utmost in the time we’ve had. I have no doubt that, but for ALS, you and I would have contentedly shared the rest of our lives. And I don’t say that because we never had conflict. We did, of course, like any other couple. But it’s how we dealt with the conflict. That was the gamechanger. You appreciated my honesty and I appreciated your ability to repair. Sometimes, just when I thought that no words could make me feel better, you had the words. And, not only did they make me feel better but ‘we’ felt even stronger afterward.

It has been a marvel watching you walk this difficult road. You said you didn’t choose to be the poster boy for ALS but, if that’s what you had to work with, then so be it. You shared that fact openly and let people join you and support you. The house was a revolving door of people wanting to see you, be with you and help you. I was astonished, not only by the number but by the diversity too. If there was a love type, like a blood type, you’d be a universal donor and a universal recipient!

Thank you, to each and every one of you gathered here today, for the love and support you have given Shep. And for the many, many offers of help. Special acknowledgement to a few, and forgive the military metaphor, with ‘boots on the ground’: Matt, Phil, Kevin and Kirsten, Kim and Jason, Donna and Bruce, Laura, Lore, Todd and Dan, available on a moment’s notice, arriving with smiles and good humour along with skills, care and devotion. And thank you to the wonderful caregivers Asha, Amina, Andy and Everisto. I have huge respect for each of you. I admire what you have chosen to do as your life’s work and, most importantly, the way you have chosen do it. Thank you for your dedication, love, kindness and strength. Shep and I are eternally grateful. And, Shep, you are my superhero. The way you tried to make it as easy for everyone to care for you as you could. The way you made some really hard transitions with grace. The way you took a genuine interest in the lives of all those around you even while trying to keep your own head afloat. And the way you hardly ever complained. Despite a million frustrations, impediments and indignities. And, the way, somehow, through it all, you stayed in good spirits and made me laugh every day.

I think the Periodic Table left out the most important element in existence. Love. Though it cannot be seen or measured, captured or put under a microscope, what love really is, means, and is capable of, no one knows. But I think it is the strongest force in the universe. I believe it is in every rock and tree. Every creature and every human. In the stars and planets and the black stuff between them. I think it courses through everything, binds everything, and we can’t truly understand anything unless we look at it through the eyes of love. I feel this in my bones. I feel it when I walk in a forest and when I look at the moon. I feel it when I hear children laugh and birds sing. And I feel it when I look at you, Shep, and Spydee sits on my lap and Jerry Garcia plays. I believe this loving universe will bring us together again. As it says in one of our songs, “Somewhere there’s a place for us, Someday a time for us. Hold my hand and we’re half way there. Hold my hand and I’ll take you there. Somehow, Someday, Somewhere.”

When it is my turn to pass, I want your handsome radiant face to greet me. I want you to take me in your strong arms, hold me tight and whisper my name with your real voice. And then I want you to do that falling down thing you do and make me laugh until I can’t catch a breath.

Until then, I will carry you with me always, and your lessons of love, laughter, connection, peace, action, hope and the power of fearlessly sharing your gifts. And, in this way, for now, anyway, what we both were looking for – a conversation that would go on forever – will.

Thank you for entrusting me with Spydee. He will get all my best love and care until he decides he wants his favourite lap back, yours.

The last words I want to offer you are from John Lennon. Please wrap them around you and let them fill your heart as you as you transit to your next adventure:

“Limitless undying love which shines around me like a million suns
It calls me on and on across the universe.”

I love you, Peanut. I always will.

-Butter.

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