Fear of Death Because of SMA

My parents never hid anything from me. I knew exactly what SMA meant. I knew the realities of my future even as a young child.

A daunting life expectancy with SMA

I even remember hearing the doctors tell me many moons ago that the life expectancy of a child with SMA type 2 was around 15 years of age. Now imagine being a 15-year-old knowing those words were spoken over you.

A daunting thing to tackle as a young girl who had many aspirations and dreams, many goals and ambitions, but how would I know this wouldn’t be my last year? This is still a question I fight with daily.

Living with the "what ifs"?

Last week I turned 33 and I can say that every birthday is truly a celebration as I realize I got to live a beautiful life another year. But I still struggle with the thought that "what if?"

What if I increasingly get weaker? What if the treatment doesn’t work? What if I get sick and that’s what takes me out? All of these things are thoughts that I truly wish I didn’t have.

A fear of dying

I realized I had a fear of death. Something I needed to work through. Not necessarily overcome because the reality is we all die, but if I was letting this dictate how I lived my life was I truly living?

During the past two years of the COVID scares and all the transitions in our world, I realized this was a deep-rooted issue that I needed to work on. I began to talk to counselors and close friends and my husband about my fears for my future.

The greatest thing that I’ve walked away with from counseling, through conversations, and through a perspective shift is that life is not guaranteed for anyone. When I lost my brother at 25 who also had SMA, this was an even greater and eye-opening moment.

My advice for overcoming the fear of death

1. Acknowledge you have this fear

Did some of the questions I have asked myself ring a bell to you? Does the thought of not loving tomorrow scare you? That could possibly be a fear you have.

2. Talk it out

I know the conversation of death can sometimes feel like a morbid topic, however, the reality is, it’s a reality! Have a conversation with a counselor or close friends that you trust and share your deepest fears and concerns. I have found that even just getting it out has allowed me to move past it and feel lighter

3. Don’t stop living today

Just because we know death is a reality does not mean we have to live as though we are already dead. Plan out your next big event, dream big dreams, and plan for your future.

No one is guaranteed tomorrow. So I believe it truly challenges how are you living today. I don’t want to spend my whole day thinking through the "what ifs."

Instead, I want to go tackle life and enjoy it. Play with my kids, have fun with my husband, enjoy time with my friends, and keep building and dreaming of the future because that’s truly how we should live.