My Beautiful Journey Toward Personal Growth

Today I want to talk more about my outlook on life, as well as yours. Hopefully, nobody who regularly reads what I write ever comes away thinking that I have it all together. I will be working on my outlook and personal growth until the day I die. I hope you will, too.

Here’s the thing about living with spinal muscular atrophy (SMA): It’s almost as if life tries to hand you a free license to stay stagnant. Who has time for personal growth when you’re just trying to survive the hazards of this disease?

I’m here to say, when life tries to persuade you to make excuses for yourself, “Just say no.” Use this old anti-drug slogan when you’re tempted to take the easy way out. I’ve written before about how sometimes I have taken the path of least resistance. Why work hard on advocacy and write emails to legislators when I could just relax today? When I do this, sometimes tomorrow turns into next week, which turns into next month, and so on.

When I procrastinate so badly, it lowers my confidence that I can get things done and achieve greatness. Deep down, I know I can. I’ve done it time and again. Yet I have to continuously prove it to myself. I have to remind myself that, “Yes, I can do whatever I set my mind to, despite SMA.” This is a good bit of what self-growth means to me.

Recommended Reading

March 11, 2022 News by Marta Figueiredo, PhD

Delays in Physiotherapy Don’t Limit Spinraza’s Potential, Study Suggests

Please don’t think I’m saying that taking a break is bad. Recently, fellow SMA News Today columnist Alyssa Silva was in the hospital recovering from a serious illness. She had to take over a month off from writing. That’s not making excuses; it’s taking care of your needs.

With Alyssa fortunately out of the hospital, I also understand when she says, “I am here, and that is enough.” At the present, she needs to focus on taking care of her needs and getting better. That in itself is a great achievement.

There is certainly a fine line here. How do you know when to speed up in chasing after a goal and when to slow down? This is a secret in life that everybody is trying to figure out, not just those of us with SMA. At age 39, I am still learning as I go.

On either side of the line, there are responsibilities. On one side, you may have to do things like community projects. On the other hand, you must take care of yourself. Caring for yourself is necessary not just when you’re sick, but also when you’re well. This is called taking preventive measures to protect your health.

In my case, I usually do multiple vest treatments a day, as prescribed. These are a way to get rid of secretions in the lungs, using an inflatable vest that wraps around the chest. Normally, I don’t skip it, even when I have no congestion. If I do, I know I’ll feel the repercussions shortly down the road.

This means at least two hours a day are devoted to this medical task. That’s a good part of the day. How do I get any work done?

It’s all about time moderation. After all those treatments, I could say, “I just feel like playing computer games for the rest of the day instead of work.” Almost nobody would blame me if that’s the choice I wanted to make. This is the free license to make excuses, as I mentioned above.

But instead of taking the rest of the day off, I try to take breaks for just 30 minutes at a time. Work is dispersed throughout the afternoon.

I’ve said it before, and I’ll say it again, the choice to do everything in moderation is hard. None of us may ever master it, but just by trying, we gain a mature outlook on life. Maturity allows us to stick to the responsibilities and hardships of life, no matter their nature.

After all, as fellow columnist Katie Napiwocki wisely wrote, “Living with SMA doesn’t make us immune to the many hardships that have absolutely nothing to do with SMA.”

Being productive every day is not the only way to grow personally. That is just my strategy. You can become more mature just by treating people with kindness when they deserve your anger. I need a lot of growth in this area.

No matter how you want to improve your outlook on life, just know that you have extraordinary value. You are also capable of things you never thought you could do. Both of these truths make you beautiful.

Just learning about the beauty inside yourself is what personal growth is all about!

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.