Normal? What does that mean to you? Well there is no right or wrong answer but everyone’s meaning is different. Some may say being able to run, maybe walk; while for others to talk or have the ability to breathe. Normal is a word often used however never understood to full capacity. My normal is living with SMA which stands for Spinal Muscular Atrophy.
Spinal muscular atrophy is a progressive, rare genetic disease that is caused by the motor neuron gene that is missing or not working properly. Everyone is born with a certain amount of motor neuron cells, which are responsible for communicating with our muscles and telling them to work properly. Without enough, the motor neuron cells become weaker and weaker and eventually stop working, losing all function, and die. As a result, things many of us take for granted, like breathing, eating, speaking, and lifting the head, become difficult. There are four different types of this condition that are based on the age one starts to show symptoms and the amount of strength you have. I have type three, which means that I walked until the age of 2 then started losing my mobility. Now I am 15 years of age, with the ability to type this article for others to learn about what I go through and have to overcome everyday just so I can live my life to the fullest.
What a lot of people see are the obvious - yes I am in a powerchair, yes I do look a bit different based on how I have to move, but there are a lot of things the able-bodied don’t realize about what powerchair users or any different type of transportation users have to think of when having a disability.
For instance, we have to know where we can or cannot fit in, like doorways or store aisles. Even tables at restaurants may be too low or public bathrooms too small. So we must take into consideration all these things before we even go.
Some things that I have personally dealt with, along those things are activities that I want to be able to experience like driving a car, only have a small selection because some cannot be modified; or being on a school sports team, which gratefully I am able to say I have a team.
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My team is through the United States Power Soccer Association also known as USPSA. This offers disabled members to join together and play the sport they love - power soccer. This gives me a chance to be a part of something that others can also understand and relate to. When I play I don’t have to worry about what I can't do but what I can. At tournaments I am able to associate with other SMA members and non, learn about others, help each other out. For people who play any Paralympic sport it is just the same as non-Paralympic but for the able-bodied it is almost as a foreign language, something easily watched yet not quite fully understood.
With SMA I have learned medical terms by the age of 7 from doctor's visits because we have to be able to understand our bodies just in a more in- depth way. Personally, I think since having this medical condition I have to be more aware of my surroundings. For example, I think of every case scenario just to make sure I can overcome the obstacles ahead for that single day. I also think when having any condition most - and I will not say all because I cannot speak on behalf of others - go through an acceptance stage, meaning you don’t want those side looks from people when going into a mall or kids asking inconsiderate questions. All you want to do is be that “normal” which nobody is, but you wonder what if.
These are just some things that go through my mind while having these cards that I’ve been dealt with. Having SMA has taught me that everyone sees the world differently. That we all have our personal challenges. But the most important part is sharing those differences to inform others, to have an insight on daily struggles we must learn to adapt to without others noticing. I’m writing this not only to provide information to those who are unaware; but also the month of August is SMA awareness month, which is when our SMA community recognizes and helps funding for Cure SMA. This is a great opportunity to learn about different disabilities to learn what their normal is.
