SMA Awareness Shows the World How to Live Positively: Halsey’s Take

If you’re a regular reader of my column, you might have noticed that it usually ends with a positive spin. Once, I even wrote about being thankful for things that don’t seem very good.

I won’t deny that life with SMA has negative aspects, but whenever possible, I prefer to seek the positive. It’s important and healthy to acknowledge hardships, but I don’t find it beneficial for me to dwell on them longer than necessary. Looking for the positive after acknowledging the negative is also healthy — physically, mentally, emotionally, and spiritually.

This is a perspective that many of my fellow SMA News Today columnists tend to share, including my friend Ari Anderson. In a recent column, Ari writes, “My life has been a roller coaster recently. Be aware, though: This is how SMA is at times. It doesn’t mean I have any less of a positive outlook. It just helps me — and all of you — enjoy those happy moments all the more.”

When I think of Ari, his positive attitude toward life is one of the first things that comes to mind — that and his passion for advocating on behalf of the disability community and our caregivers.

This desire to remain positive and joyful is something Ari and I have in common, and it recently sparked an idea.

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Since we both feel that this is an important topic to write about, we decided to team up to share our perspectives on the subject in a set of collaborative columns for SMA Awareness Month. This column is one half of that set. In his column, “Soaring With Hope,” Ari wrote the other half, which was published yesterday. If you haven’t already, please give it a read to hear our full story.

For me and Ari, being joyful is an intentional choice, and because we’ve made it so many times, it’s now a natural response that we often default to. That’s not to say that neither of us has bad days when we have to purposefully think about this choice a bit more, but we’ve spent enough time fostering joyful attitudes that it’s a fairly common emotion for us.

Whether it’s a good day or a bad day, it’s always made better by searching for joy. Sometimes, that can be found in obvious things like a beautiful, sunny day, the notes of a song drifting from my brother’s piano, being greeted at the door by my excited dogs, or tasting a favorite sweet treat.

Other times, it takes a little bit of wading through life’s messes to find it. To give just one example, my daily life contains what can feel like endless numbers of breathing treatments. They’re time-consuming, repetitive, and involve a lot of coughing.

But the outcome can be cause for joy. It makes breathing easier, it requires me to rest when I need to, and it reminds me that I’m blessed by wonderful people who help complete the treatments for me.

Everyone’s life has its own challenges, but they don’t have to negate the good moments. And those good moments can sometimes be found in the midst of chaos if we choose to seek them.

While discussing what we wanted to share in these columns, Ari and I agreed that in addition to choosing joy, we also have something very important that helps us live our lives in a way that brings us joy. That is our dedicated, loving mothers.

Ari and I both live at home with our families, and we have nurses who come to our homes to care for us. And whenever our nurses aren’t available, our moms fill those gaps themselves to make sure our needs are still met.

Our moms don’t just provide physical care for us, either. They also offer us their unwavering love, support, and wisdom, and they advocate on our behalf to ensure that we have joy-filled lives. They’ve been doing that since we were born, and they’re a key component in our support systems and happiness.

In his column, Ari points out that he likely wouldn’t even be alive today without his mother’s support and care, and the same is true of me and my mom. They are one of the greatest blessings in our lives.

I mentioned earlier that August is SMA Awareness Month. Ari and I felt that this is a fitting time to share our message because we want you to be aware of the impact that joy has on our lives. Yes, life with SMA is hard sometimes, but friends, it’s also so full of joy. And joy is such a wonderful, powerful thing. We seek it daily because our lives are made better by it. We hope that yours is, too.

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.