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

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by Ari Anderson |

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finding joy | SMA News Today | Main graphic for "Soaring With Hope," a column by Ari Anderson

Thinking about parallel universes can be scary. Sometimes, though, it’s necessary to think about the scary what-ifs in order to be more aware of the positive things in life. More on this in a minute.

For my friend and fellow columnist Halsey Blocher and me, looking at the bright side of things while giving joy to others feels almost like a mission from God. We both regularly try to point out in our writing that joy can be found in the simple things.

To demonstrate how strongly we believe in this, we collaborated on two columns for SMA Awareness Month. To read the other half of this message, please visit Halsey Blocher’s column, “From Where I Sit.” Her part will be published tomorrow.

Halsey conveys wisdom by writing, “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.”

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If we try hard enough, most of us can find our own pleasures in mundane things. All I have to do is imagine a parallel universe to make me thankful for the life I have.

To make this personal, let’s compare my actual life with what my life would be like without my mom. All evidence points to the fact that I’d be dead without her.

Actual life

My family has never been rich, but that hasn’t stopped my mom from working extremely hard to give me what I need to survive and thrive. She puts her entire heart and soul into her work as a discharge planner at the hospital. She won’t sleep until her patients have the services and equipment they require when they go home. Often, this helps to keep people from being readmitted to the hospital.

Yet her passion to provide for people no matter the personal cost pales in comparison with her efforts to support me. What she does for a living not only pays the bills, but is also directly linked to my care. You almost have to be a rocket scientist to figure out all the policies for Medicaid and Medicare programs. Somehow, my mom does it every day to get her patients what they need. And she uses this knowledge to get me what I need, too!

Parallel universe life

Unfortunately, life has a way of throwing devastating punches at people when they least expect it. My mom meets parents every day who used to have a physically independent child. Suddenly, a spinal cord injury paralyzes their child from the neck down, requiring them to be on a ventilator 24/7. There’s no way for anybody to prepare for this. However, the truth is some people will rise to the occasion, and others, not so much.

It can be overwhelming for parents to sign up for Medicaid or Medicare so that their child can receive home nursing care. To make things more complicated, nonmedical parents have to be taught their child’s care for those shifts when a home care nurse isn’t available. Parents and other family caregivers can be given the knowledge to do these things, but do they always have the will to learn?

Sadly, no.

I’m not saying anyone is a bad parent. The fact is, though, if I didn’t have my mom, who didn’t become a nurse until many years after I was born, I wouldn’t be the author and advocate I am today. If my mom hadn’t had the will to learn my care and the ropes of Medicaid and Medicare, I would’ve gone to live in a facility instead of at home. There, I’d have little chance of staying alive, since I need one-on-one care to survive.

The same is true for Halsey. Her mom has never been a nurse, but she still had the will and positive attitude to give her child the best shot at life.

A positive conclusion

Whew! I’m glad to be getting back to my actual life. It just goes to show that with a positive attitude, you can always find light in the darkness. In Halsey’s and my opinion, faith helps a lot as well.

Those of us with SMA may be especially attuned to finding joy in unusual places and things, but anyone can learn.

The joy can simply be in trying. Maybe that’s what true SMA awareness 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.

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