The Struggle From Inside

In Mind, Body & Spirit, Pushing Forward by Erich Cella

As someone living with a crippling affect of Duchene Muscular Dystrophy and someone who has seen a copious amount of his brethren fall victim to this indiscriminate assault on our sacred temple, I’ve had to carry on with that pain but one day I woke up to the realization that I can help others learn how to cope.

Muscular Dystrophy can be much more devastating to the soul of an individual than the physical status of the person it engulfs by taking away so many things that most people take for granted, and that reality can play merciless tricks on your mind.

Of course we all know the horrors of Muscular Dystrophy and they have all been well documented throughout the years. I’m referring to the weakening of the muscles, the slow progression from the ability to walk to being confined to a wheelchair, and the multiple heart problems that you may suffer as you get on in years.

What you learn in the early stages of dealing with this dubious inheritance is that you need your family to act as if its just part of which you are and that it is essential that you surround yourself with people that can accept the unfortunate birth mark and move on.

It can be a mind killer if you let the realization skulk into the recesses of your psyche and the longer you let this troubling sensation linger you enable a piece of yourself to rupture from your foundation.

There are nine specific types of Muscular Dystrophy according to the Muscular Dystrophy Association and each type might affect the individual in a variety of ways but we still all share a common bond and all wear it like a badge of honor.

The nine types of Muscular Dystrophy include Duchene, Myotonic, Becker, Limb-girdle, Facioscapulohumeral, Congenital, Oculopharyngeal, Distal, and Emery-Dreifuss. I could go into the details of each form of the disease but would much rather share my experiences and spread the word on how to fight through it.

We all have a choice of how we want to live with this burden and that choice is whether or not we can still lead a fruitful or successful existence or we can retreat into our bunker of empathy and act as if the bomb has already dropped.

It may seem very difficult to basically just shrug your shoulders and forego a relatively healthy lifestyle but you have to keep that as your mind set in order to survive.

That’s not to say that you won’t be frustrated by the amount of effort it may take in order to perform certain daily tasks but by overcoming the many short comings that serve as obstacles you develop an innate resiliency to the other hardships you may face during your lifetime.

I’ve had many monumental bouts with myself on which direction I would take my life or what path to follow and struggled most of my life to come to terms with my situation. The constant tussle over whether or not I could bear the thought of a life full of physical sacrifice put a strain on my mind but it would be nothing compared to the guilt I would suffer.

The guilt comes from the feeling that this unfortunate setback is something my family would have to look into the eye of every single day and that constant hindrance could be demoralizing to them.

The fear that I might not be able to fulfill my expectations as a son due to the complications of my unfortunate genetic destiny and the fact that I would not be able to strive in athletics or would not possess the ability to participate in other ordinary activities hit me like a ton of bricks as a child.

I could not wrap my head around the concept that I would spend most of my life in a wheelchair and would be severely limited in ways I could only imagine. This unhealthy attitude and the anger that I felt sheltered who I really was and I would suppress my feelings causing me to close up and neglect what was important to me.

In order to escape this paralyzing and helpless sentiment it’s important to be forthright about the toxic venom that is slowly murdering your mettle and share it with a confidant or someone who you can trust.

I learned that letting out your frustration and having an emotional outlet can be essential in accepting your fate. It doesn’t matter if you write to express yourself or listen to music or maybe just scream at the wall for a certain amount of time as long as you find a release to the agony that may be penetrating your soul.

You have to flush out the self doubt surrounding you and stop looking for someone to feel sympathetic towards you. As you navigate through life and you grow up it’s amazing how you begin to accept what god has thrown at you and begin to understand your place in the World.

Building up a stone wall with an assortment of lame excuses can smother the drive or any sort of vigor that you might possess and the disease will be the last thing that will slowly creep up and rip you to shreds. There are worse things than not being able to drive a car or being able to put on your own shoes and acknowledging that there are tasks that your not capable of performing will make it easier to concentrate on what you can perform.

Having a reliable support system is the most imperative strategy to keep plugging away and keep your head up no matter how dire the situation is. It goes a long way just to share a laugh with a friend or maybe to share in on an evening of drunken debauchery but the main theme is that you need to find an escape.

You also have to make sure that you are able to address your imperative health needs and explore every possible avenue in order to eliminate as many barriers as you will face. Making sure that you get all the help that you need and that you can live as comfortably as the next citizen is a god given right and can never become compromised.

There have also been a plethora of rulings and laws that have been thankfully put into place to protect our rights but if there is ever an issue of accessibility or discrimination don’t let it impede your liberation and it’s important to stand up against your antagonist.

It may sound ridiculous to you that after all these years of protest and civil rights posturing that there is still discrimination but it’s a reality as long as ignorance is prevalent in modern society.

Of course it’s an uphill battle as you go through your life with this affliction and its going to cause you to challenge yourself in so many grueling ways but it’s only going to supply you with the strength you need to leave your mark on the spinning globe.