Susan Leslie: Having a Partner with ALS

Susan Leslie: Having a Partner with ALS

You asked me to write about what it is like having a partner with ALS.

You want to know what it is like to be in my shoes.

As a former Legislative Counsel, I can tell you that, legally, “a” is read as “any.” So, you have actually asked me what it is like having “any” partner with ALS. I cannot answer that question. Because I don’t have “any” partner. I have you. Shepherd Siegel. And Shepherd Siegel is not like “any” other.

It is hard to pigeon hole a platypus and your enigmatic nature is one of many things that is fun about you. You are easy going but also a bit rigid and picky. ‘Sheppersnickety’ was a nickname that came to me quickly. You are patient and understanding and can take anything that I, or life, throws at you as long as it doesn’t happen after 7 p.m. A lesson I wish I could remember more. And, while you have excellent boundaries, you seem to say ‘yes’ to everything.

There are other qualities that have no counterpoint. You are – grounded and whole, wise and kind, fascinatingly intelligent, effusive and confident. You accept recognition with humility, appreciation and an endearing touch of surprise. I admire your accepting, non-judgmental nature, strong moral compass and compassionate spirituality. I feel safe with you, and know I am not alone in that.

I never knew the fully animated Shep but I’ve seen you elevate every room you’re in with your presence. I’ve watched you gather a diverse group of people and, even with the significant handicap of typing with your eyes, guide the conversation into interesting and unexpected terrain and depth, often finding commonalities among the group that only you knew existed. Your friend list is like none I’ve ever seen and I started to understand ‘why’ when I heard that you have a goal of talking to 7 people every day. I adore that peek into your ‘motus operandi’ as it reveals the imagination, premeditation, dedication and sheer effort you have put into collecting, and keeping, your peeps. Finally, as if all that isn’t enough, did I mention hilarious? Your command of the English language enables you to shoot zinger after zinger right into my funny bone and, as I belly laugh, you shake with glee, with a mischievous Grinchy grin on your face and fireworks in your eyes. How I love that.

There are frustrations, too, I know. Almost every second of your existence now is challenging. Even ‘Gizmo,’ which allows you to stay connected through words, is cumbersome and slow. You can only communicate the tip of the iceberg of your thoughts, but I want to reassure you that you are able to say more with a few words than most of us can say with a million. As others have observed, you communicate on Gizmo with patience and determination when it would be so easy to succumb to frustration. That, in itself, says volumes about your strength of character.

I’ve never heard your real voice. I’ve only heard audio recordings. It’s such a wonderful voice and a great loss to you and to your friends and family. And one of countless things I’ve missed in your life. When you meet someone when they are 71 years old and you are 65, you know that their past and yours is going to remain fairly inaccessible and opaque to each other, though usually one’s voice isn’t part of the package. So, thanks for that, ALS. On the plus side, we are both old enough to know that the only time anyonehas is the present and that some moments can last a lifetime. I, for one, lean heavily on that.

Denied your voice, and perhaps the obfuscation of limitless words, we found another language. We share things in subtle ways. We read each other very well. We know when each other is upset, when we’ve crossed a line and when it is time to take a little break. We have disagreements and hurt feelings and misunderstandings like any relationship. ALS hasn’t changed that. But it does help in wanting to resolve things quickly. We fight well together, a fact we both appreciate. You have told me that you like that I am willing to talk about what’s bothering me and not walk away. I have told you that I appreciate that you never take the bait, that you and see the heart of the issue and say the words I need to hear.

You once said to me that your eyes would tell me everything. It is true. When words have failed, your eyes have not. We look very deeply at each other. We share love, fear, sorrow, annoyance, laughter and joy. But it’s more than that. Somehow our souls found a language and joined together. We ‘talk,’ frolic, enjoy, bask, fawn, amuse, entertain, marvel, flirt, tease, taunt, toy, thrill and revel in each other’s company. ALS robbed us of a future but it did not rob us of the joy of falling in love.

It is hard to encapsulate my feelings. I cycle through the stages of grief like I’m on the Tour de France. But it’s all roiling under the surface still. My finger is in the dike. You are still here, after all, and there is much to do.

I have many roles. I am companion, friend, lover, jester, caregiver, medical monitor, household manager, supervisor, trainer, payroll clerk, sometime cook and housekeeper, medication stocker, grocery buyer, spokesperson, representative, scheduler, researcher, future planner and the messenger who gets shot on occasion. I am also one of the incredibly lucky people whose hand you wish to hold as you walk this difficult journey. This is a special role. A sacred role. Thank you for allowing me to do my best to honour it.

As I walk with you, I am in awe. You are solid, grounded and pragmatic beyond any and all expectation. It must be terrifying to be so dependent on the good will and care of others. But years, I should say a lifetime, of forging connections with good people has stood you in good stead. You are anything but alone. You are surrounded by people who would do anything for you. You are as safe as anyone could be in the circumstances. And I’m glad that there is still much you enjoy – listening to music, watching shows, keeping up with politics and local events, enjoying a meal, and staying connected with friends and family through visits and emails. And, thankfully, joyfully and gratefully, spending time with me.

I know your passing is coming. I know I will have to walk through a great storm. With you, and then without you. I feel the internal seas start churning just thinking about it but, for the moment, I can keep the fear at bay. I tell myself I have been in rough waters before and I will be able to keep my little boat from capsizing by keeping my hands on the wheel and aiming at the horizon. I know, in the grand scheme, I won’t be far behind you and that you would want laughter and joy to be your legacy. I will wish the same for those I leave behind.

Which brings me to my life. The one I had before I met you and the one I will have after you are gone. One I wanted to share with you but, alas, that was not to be. For I have been so very blessed with a family that I love with all my heart. It hasn’t been easy keeping my cherished close ties with them while also trying to be a steady support for you, my beloved. But just as I have had to accept that there are thousands of people who got more of your life than I did, you have had to accept that my family remains a priority for me and it is through their generous understanding of my need to be here for you, that I am. If you think in terms of baking a cake, the cake you spent your lifetime baking is a huge community of friends, which includes family. The cake I spent my life baking has friends too, but is mostly about my family. We have this in common, though. We both had trouble finding the right icing for our cakes. Until we found each other.

And here we are. The last course. The sweet topping in each other’s lives. Why couldn’t we have met sooner? No answers to be found in that line of inquiry. And, at our age, no unravelling would make sense now anyway. But, what you and I share – maybe what I cherish the most – is a determined optimism. It’s not that we don’t see the ‘writing on the wall’ or the horrors and miseries of life. It’s that we see them but choose not to be drawn into cynicism, resignation, disinterest or despair. It is not any easy choice. It requires a commitment to help make the world a little better, to keep an open mind and to understand that things can look very different if you look through eyes of love.

I’m a ‘possibilian.’ The philosophy of ‘possibilianism’ was developed by neuroscientist and author, David Eagleman. Basically, it is the idea that, what hasn’t been disproven by science, remains a possibility. A real possibility. Not a belief. And not a guarantee. But a possibility. And that includes the real possibility that there is existence beyond what we see, in this plane, as death. I take comfort in that. None of us knows what’s going on here and it is just silly to think our vantage point tells it all. How can we look at the stars and see ourselves as anything more than an ant on a leaf, or a dog watching t.v., as you like to describe it? I take comfort in the real possibility that we have souls that need the human experience to grow, in love, and, thereby, find enlightenment. If that possibility is real, you and I have promised to meet again. But let’s make it earlier next time, a lot earlier, and share one whole life together. And, who knows, if it goes as well as I think it will, maybe a lot more lives after that. And, when it’s my turn to pass, if this is possible, I want you waiting for me, Shep. I want to hear your real voice say my name, I want you to take me in your strong arms, and I want you to kiss me passionately. And then I want to see that falling down thing you do and make me laugh until I can’t catch a breath.

I love you. I am grateful for you. Thank you for sharing your home, your family, your friends and this precious time together. I will miss you for the rest of my life when you’re gone. And, also, for the rest of my life, I will carry your lessons of love, laughter, connection, peace, action, hope and the power of fearlessly sharing your gifts. You discovered the trickster in yourself early on, lived it, honed it, studied it and then shared the capital “T” Trickster with the world. May your dream of the play society become a reality. It is a real possibility.

What is it like to have a partner with ALS? Well, if that partner is Shepherd Siegel, you follow his lead and live with joy and gratitude and strength and spirit. By living like that, in the face of ALS, you leave everyone in your wake more alive, more vital, more expansive, more whole, more accepting, more forgiving, and, just, more.

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