Loss Is Painful, but the Gift of Friendship Is Worth It
I’m fairly frequently asked what the hardest part of living with SMA is, but no matter how many times I hear the question, I seldom know how to answer it. Each day brings its own unique hardships, so how I respond changes based on the struggles of that particular day or phase of life. My life, health, and the world around me are constantly shifting, so it’s only natural for my answer to do the same.
Lately, I feel that the hardest part of living with SMA is the loss of friends who’ve passed away as a result of the disease. I’m sure that a large part of the reason why I currently feel that way is because my friend Jack unexpectedly passed away in October. My heart will always ache at the thought that I won’t see him again on this side of heaven.
Sadly, the loss of loved ones is not uncommon for members of rare disease communities. For those of us who grew up with SMA, we’ve likely had to face the loss of friends beginning in childhood. Mortality is a reality that children with SMA must learn about from a young age — both in terms of our own mortality and that of people we love.
My faith offers me hope that I will see my friends again someday, and for me, that lessens the pain of loss, which allows me to manage my grief in a healthy way and shift my focus toward joyful memories of my departed friends. Even so, the news of each new death, whether it was a personal friend or a stranger that was someone else’s friend, always comes as a heartbreaking shock.
In a recent SMA News Today column titled “Tick, Tick… SMA Adulthood,” Kevin Schaefer writes, “Just when you think that an era of treatments and medical advancements has pushed our community past the age of recurring tragedies, you hear about another friend gone too soon, or a mother losing her child before they reach a milestone birthday.”
Death and grief can be hard to grapple with, and losing a loved one isn’t something we wish to experience. But doesn’t the fact that we grieve mean that we also have loved?
For the SMA and rare disease communities, our mortality isn’t something we can ignore. It could easily be tomorrow that we might lose another friend or that it will be our turn, and that’s the kind of fact that demands to be acknowledged.
Is it a good thing to be so keenly aware of the fragility of life? That depends on the day, or sometimes, the moment. There are most definitely times when that knowledge feels unbearably heavy. But most of the time, I find that it serves as a poignant reminder of the sanctity of life and encourages me to soak up the pleasure of every second with the people I love. The gift of time together becomes even more meaningful.
While members of the SMA community have reasons to contemplate such things, sometimes daily, many people may not need to consider them regularly. If loss of life is not something that crosses your mind often, I hope you still make a conscious effort to cherish the people in your life and give thanks for the time you get to spend with them.
Jack is not the first friend in the disability community whom I’ve said goodbye to, and it’s unlikely that he will be the last. I know that it will still hurt the next time I lose a friend, but I wouldn’t give up a single friendship to spare myself from that pain. Those friendships are a blessing, and my life is made better by having known such kind, loving, and thoughtful people. Knowing someone you care about for even a short time is far better than not knowing them at all.
When we lose a loved one, it’s OK to be sad. It’s normal and understandable. But I hope that in the midst of that sadness, we find comfort and joy in remembering that friendship. I hope that reflecting on fond memories of the people we love and sharing their stories with future generations brings a smile to our faces.
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.