Remembering loved ones by modeling their strengths
As disease claims friends and colleagues, we can honor their lives through ours
It surprised me to open my email one night to find a message from my colleague Michael Morale. Well, it wasn’t really from Michael. It was from his Otter, a virtual assistant that had attended a company meeting for him that day and sent notes to everyone with a company email address.
At first glance, it looked like Michael had sent the email himself, which was impossible. Michael had died just a few days earlier, hence my surprise. Even after I realized what had actually happened, it felt a bit like my friend was contacting me from beyond the grave, which sounds like something he would do.
That email is probably what my friend and fellow SMA News Today columnist Helen Baldwin would call a sign. Whatever you want to call it, I cherish it.
Perhaps what I love most about it is that it’s so indicative of the kind of person Michael was. He invested in others, freely shared the knowledge he’d acquired, and made people laugh whenever possible. Even though that email was the result of technology just doing what it was programmed to do, I felt like Michael was reminding us that he cared about us.
From loss to legacy
Michael isn’t the only person we’ve lost this year at Bionews, the publisher of this site. A few months earlier, DeAnn Runge, another member of the SMA News Today team, unexpectedly passed away.
When I spoke with my co-workers about DeAnn, the characteristics she would be remembered for quickly became as clear as a starlit night sky. Everyone considered her a kindhearted friend, many had stories of times she made them feel welcomed and included, and several recalled her bright smile. What beautiful memories to hold on to!
I wish it were possible to say the losses the SMA community has suffered in the past year end here, but it isn’t. Far too many have said goodbye to someone they loved before they were ready, and among those losses are a heartbreaking number of children and teenagers.
For me, SMA Awareness Month, which takes place every August, is largely a time of remembrance, although that practice certainly isn’t limited to just this month. I seek to remember the loved ones I’ve lost, whether to SMA or other causes, and honor their lives regularly. I share their stories — both in writing and conversations — light candles, and pause to reflect when memories of them surface.
There are many ways to meaningfully honor the legacies of the people who built them. One that we can all strive for — and that I believe our loved ones would approve of — is to model some of the attributes we admired most about them. When someone pours goodness into the world, they deserve to have that goodness recognized, cultivated, and shared with others, both during their life and after they’re no longer here.
For those of us who knew Michael and DeAnn, we could exemplify Michael’s humor, intentionality, and thoughtfulness and DeAnn’s compassion, brightness, and invitations for everyone at the table to be heard.
In honor of the kids who have had to leave us at such young ages, perhaps we can show their courage in the face of adversity, vibrant imaginations, fierce love and loyalty, or optimism toward both the present and future, which are traits I often hear when they’re described. We have much to learn from these remarkable young people, so let’s listen closely to the lessons they’ve left for us.
There are many other SMA legacies in my life that I can also honor by living in ways they did. Among them, MJ Purk was a creative advocate who always had good book recommendations, Jack Freedman knew no stranger and made everyone feel special, and a member of my own family, Sarah, lived by faith and brought joy to everyone around her. These are just some of the qualities that come to mind when I think of these people I love, and I hope to be able to pass on these gifts they shared with me to the rest of the world.
Losing people we love is hard. It always will be. But we have the privilege of carrying pieces of them with us, and I think some of those pieces are meant to be shared. The difference they made in life doesn’t have to end with their death. It can continue in us. And what a great honor it is — for them and us — that they got to live such full, impactful lives, such that we’d want to show them to the world in how we live our own lives.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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