“You used to do it”

“You used to be able to do it.”

This quote is a real tear jerker. When said by many it’s often not realized how much it can emotionally effect someone.

I recently turned 21 and living through 2 decades you pawn on the past and how the disability has progressed!

This disability is progressive!! It is going to get worse and unfortunately it isn’t up to you or me to stop or delay it. There’s no control on when or how it’s going to happen. Yes! I USED TO DO IT! That is the life of someone effected by Muscular Dystrophy.

I try to think back to when I stopped being able to do the things I used to do. Recently at my grandmas I had troubles getting up the last step because the railing stops. I used to be able to do it so well but after an incident at my own home with my own stairs with the similar position of the stair case, it felt so risky and unsafe that it limited my ability to do what I once “used” to do. Progression to me is a mix of ability and fear. We become limited after incidences that have effected us in a negative way. Much like when we achieve something with such grace and ease we look forward to doing that action again because it felt so good. This is also true when compared to a negative interaction. If something became difficult or ended in an injury or fall we become fearful it’ll occur again there fore limiting us from doing this action again.

Living our lives day by day you never notice a difference in activity until given the opportunity to reflect on your past and how the disability has progressed over time. Once I left the children’s hospital and stopped having yearly visits I wasn’t reminded of my progression or if the disability was plateaued. I was never given the opportunity to realize that maybe this time I do this activity is the last time I’ll be able to do it.

Much like losing your sight after years of perfect vision, or losing the ability to hear after a life of being able to hear a pin drop people with progressive chronic disabilities also have to bear the emotional component to once being able to do something you will never do again. So what used to be will now never be and it’s one thing to know it but it really pulls on an emotional string when noticed by loved ones around you.

Today I post this on September 30th, also known as Limb Girdle Muscular Dystrophy Awareness Day.

My blog is not written for sympathy or pity. I don’t want others to look at me and feel bad for what I go through every day. My goal in writing about my perspective of struggles is to raise awareness which is what September 30th is all about! My goal in sharing and “exposing” myself is to educate! In a world where there is protesting about equality for the LGBTQ community, different race and feminism there isn’t any education on progressive disabilities.

If you don’t know, ASK! The more you open your mind and your heart to the world around you the more you will grow as a person and become someone absolutely extraordinary!

Learn, Love & Grow! Be Extraordinary!

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