The special payoff I receive when I work hard to bring up secretions

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by Ari Anderson |

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If you regularly read what I write, you’ll know that whether you have a rare disease or not, I have similar emotions and thoughts as everyone else. Yet, the medical symptoms I experience from SMA must seem completely foreign to anyone who doesn’t live through it or isn’t close to someone who does.

It can be frustrating to know there is a gap between the symptoms I experience and how little most people understand about them. However, it just means that I have to be creative in describing them in terms that people can understand. And being creative is something I enjoy.

When I get sick, my mom usually tells people on the phone and online to pray for me, because, “I need to get cleaned out.” I have a ton of gratitude for everyone who thinks about me and prays for me every time I get sick. I wonder, though, if people understand what is meant by “getting cleaned out.”

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An explanation in common terms

Many of you know that it takes hard work to pay your bills and earn a living. The “bills” I pay are different. They still require a lot of hard work, but I don’t pay them off with money. I pay them off with time, effort, and other things I will explain in a moment.

My “bills” are the amount of secretions, or fluid, in my lungs. Even when I’m not sick, I still need to work to cough as hard as I can during my Vest airway clearance treatment. I do this so that the fluid in my lungs doesn’t accumulate.

When I get sick and have a lot of “bills” in my lungs, it can be worrisome. When other people have a lot of bills, they worry and want to protect everything they’ve gained in life. Likewise, the fluid in my lungs means that I need to get in gear to protect my actual life.

When other people have a lot of bills, they may have to take on extra hours at their jobs. I feel like I have to take on extra hours as well, except my job is to get myself well.

Extra hours in my case entail doing more Vest treatments each day. But I don’t just sit back and relax while the vest vibrates my chest. People with SMA type 1 typically have a weak cough. As I mentioned, during the Vest treatment, I have to cough as hard as I can to get the secretions out.

The vest makes it somewhat easier to cough, but it’s still a pretty big challenge that takes a huge amount of effort on my part. In a column I wrote a while ago, I mentioned that when I was 2 years old, I was given a pair of boxing gloves. This came to symbolize many things in my mind, mainly that I was a fighter.

Therefore, I would compare my effort to cough up fluid during treatment to putting on my boxing gloves and trying to punch through a big, thick, concrete wall. Doesn’t that sound hard?

What motivates me is that there is “money” on the other side of the wall. This is in the form of the secretions I see coming out because I coughed hard enough. When I cough, the secretions come up from my lungs to my tracheostomy. Then my nurses can suck up the fluid into the tubes of the cough-assist and suction machine. The fluid is the “money” I need to pay my “bills” for a healthy life.

It takes a lot of time and effort for me to earn this “money,” just like it would to punch through a concrete wall. When I am well, I spend up to a couple hours a day doing the Vest treatment. When I am sick, I spend even more time on it. This means that, sick or well, I spend hours a day coughing and bringing up secretions.

So again, when my mom says that “I need to get cleaned out,” it means that I need to work hard to cough up the fluid in my lungs. Does it make me tired by the end of the day? Sometimes it does. But it’s worth it if I want to breathe well.

Other people work as hard as they need to in order to earn a paycheck and support themselves. I’m no different. This demonstrates yet another way that people with and without rare diseases are all the same.

We all live and “work” through hope!

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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