‘Rather than growing stronger, my skeletal muscles are wasting away. But I’m still up and kicking…well, not really.’: Man with Spinal Muscular Atrophy shares journey with humor

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“My name is Ricardo—simply known as Ricky. I am from Portugal and am 23 years of age. I have a disease called Spinal Muscular Atrophy, which has confined me to the wheel since only God knows. To be honest, I wanted to tag this article, ‘The Boring Post’ initially, until I realized it would only result in fewer clicks. So, now that you are here, please don’t be lazy and do read till the end.

As a neuromuscular disease, Spinal Muscular Atrophy (SMA) is a rare disease with a prevalence rate of 1 in every 6,000 children—so, you can see how lucky I am. Within the human body, two proteins help develop and maintain muscle tissue. When a person has SMA, it implies that one of the two proteins is lacking. Consequently, it will result in poor development and progressive deterioration of the muscles over time.

Basically, we can say I have been a lazy, lucky lad from the fetal stage. After all, who else can feel like, ‘Oh, yeah I choose not to develop this protein,’ if not a stubborn person like me?

Let me start by explaining what spinal muscular atrophy is. As it’s a genetic disorder, rather than growing a stronger body and stronger bones, the skeletal muscles are wasting away. From the doctor’s explanation and my research, it is due to a loss of specialized nerve cells that control muscle movement. And I’m yet to find the nerve cells—Lol, don’t mind me, I’m not searching, just kidding.

man with spinal muscular atrophy in wheelchair
Courtesy of Ricardo Monis

I understand that several forms of SMA exist: Type 0, I, II, III, and IV. I’ll briefly talk about the forms for better understanding. Type 0 rarely occurs as it happens before birth. An infant with Type 0 SMA often finds it difficult to move in the womb and can lead to deformities. Also, considering that the respiratory muscles are weak, they usually die before birth. And since I’m here sharing this information with you, you can guess that I don’t suffer from Type 0. Happy for me, right? Smiles.

As for the Type 1 SMA, it is the most common among them all. Although muscle weakness occurs during birth, affected individuals usually survive. However, such patients can find it hard to control the head or move around. Also, swallowing meals can be quite difficult. Thus, poor feeding and growth may materialize. Additionally, abnormally shaped chest and breathing issues contribute to overall poor health. Thus, type I patients don’t usually live past early childhood. Again, you can guess that I don’t belong to this category, right? Yeah.

Let’s discuss type II patients. My own! People experience muscle weakness starting around six months of age and beyond. Although they might need help reaching a seat, they can still manage to sit on their own. People with type II SMA do find it impossible to walk or stand without aid. Also, their poor respiratory muscles may threaten their life span. The lifespan of individuals with type II is very unpredictable. All I know is that, as you can see, I’m still up and kicking…Well, not really—lol.

As expected, type III SMA emerges after childhood. Patients experience muscle weakness during adulthood. Thus, they can manage to stand and walk without any aid. However, as they become older, they may find it hard to walk and climb stairs. So, later in life, using a wheelchair may come in handy with normal life expectancy.

Like Type 0, Type IV is also very rare. It occurs during early adulthood, with affected people experiencing mild to moderate finger tremors, muscle weakening, and breathing. They also usually have a normal life expectancy.

By now, I hope you have learned greatly about spinal muscular atrophy. For some time, I have been writing about the disability, hoping that it’ll bring encouragement and happiness to fellow patients of SMA and people in general. Also, I aim to create as much awareness as possible about disability and more importantly, how the government and people should make accessibilities possible for the disabled.

Man in wheelchar outside near a beach
Courtesy of Ricardo Monis

Now, with this condition you’re probably wondering how am I able to joke this much about the situation, well…right from a young age, I think I have learned how to handle adversity. And as such, I have discovered how to find peace and radiate positive energy rather than negativity. In fact, my family often says that I always strived to find a source of entertainment while I was a kid—who wouldn’t love a happy and playful child around?

But as a human with flesh and blood, anger is part of our nature. So, it is only natural for me to get upset sometimes, most especially when I have to request many things at once. Honestly, it makes me feel like I’m bothering those around me.

I believe that other people with SMA must have experienced the same feeling—No, I’m not a magician, it’s just our thing, isn’t it? Jokes aside, this is something we all need to work on. In my case, I realized that most of these so-called ‘problems’ were created by me. In the end, humans need others to live. And as an SMA patient, I probably need people around me more than most. However, I don’t want to use my condition to inconvenience others. At the same time, I can’t shy away from the fact that I might need assistance one time or another. Whether you are living with SMA or not, everyone needs another person. So, seek help when necessary and assist others if you have the chance—maybe not repositioning someone’s head, though. Lol. I am just kidding.

Over time, I have come to realize that minor life challenges such as failing a test, missing dinner, experiencing bad weather, are not really worth flexing muscles for. Thus, I will recommend that as long as a problem doesn’t threaten your existence, don’t bother to sweat over it…unless someone takes your food away. Don’t mind me; I’m a foodie.

Okay, let’s get serious again. Till now, most of my challenges have revolved around my diseases. You know when you realize that your arms are getting weaker compared to a year ago, it can be disturbing. Also, I see myself as having problems when I used to think about the future or being about to do some things by myself—if you are in my position, won’t you feel f… okay, don’t let me use the F-word. But you get my point, right?

Good for me; I have overcome such feelings and emotions.

What’s my secret? Honestly, I have no special method, dear reader. I simply don’t think about it! Whenever I want to feel bad, I would simply ask myself if sadness and negativity would solve my problem. The answer is always ‘of course not!’ So, I consider my negative thoughts as a challenge to be handled, not a problem I can’t control.

So, my wonderful readers, I have no special secret of eliminating my negative emotions other than finding something that can distract me, as well as bring positivity to my life. You have probably heard quotes like: ‘happiness is a choice.’ In my opinion, it is true; and you should choose wisely.

Endeavor to accept who you are, adapt to your circumstance, love yourself, and always remember that positivity and happiness are close by. Love you lots!”

man in wheelchair living his best life
Courtesy of Ricardo Monis

This story was submitted to Love What Matters by Ricardo Monis of Portugal. You can follow his journey on Instagram and Facebook. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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