Friday, August 1, 2014


Passion. I've been reading some extremely passionate posts as of late that are getting to me. Since I have been unable to think about much else than the hidden agenda behind the posts I am going say something.
Passion is hugely important in any life, that is a fact. Having passion for something gives life purpose and direction. Passion is something that allows us to explain why something is important to us with conviction. That being said, forcing your passion down other peoples' throats doesn't endear you to that person any faster. I am passionate about many things but I don't believe that anyone else has to be passionate about what I am. I am totally comfortable being alone in passion and don't need validation from anyone else.
I was going to leave it at that, cryptic as it is, but I can't allow myself to let it go. Perhaps I am in the minority but I feel the need to speak for myself whether or not anyone agrees with me. I know that the words "inspiration", "hero", and recently "warrior" are irksome to many adults with disabilities. I don't resent any of these words, when used in context, of people who genuinely find my life story to be encouraging. I don't relish the responsibility associated with being an inspiration to someone but, simultaneously, I am not phobic of the title either. It is a personal choice to accept or condemn the use of these words and I have chosen to accept the term, assign it to others, and live life to the fullest no matter what. However, more than anything, I find it hurtful to say that families who have lost their children to SMA should not refer to their lost loved ones as "angels", "heroes", or "inspirations". I will not say that every family must subscribe to these titles as it is a personal and familial choice. I will say that families who choose to use any or all of these titles should not be condemned for doing so. I do consider many of the battles being fought by tiny children worthy of being referred to as heroic and inspirational. I look at the struggles faced by many of the children and find myself in awe of their strength to push through the toughest of times. Mothers and fathers who have lost their children and remain dedicated to the community and awareness are the most heroic in my eyes; my own father being one of them. SMA, whether you choose to recognize this or not, steals the lives of individuals every year and it is a reality that parents around the world have to live with. It is disheartening, to say the least, that certain individuals can't see how their statements could be extremely hurtful to those who have lost someone to SMA. I am in agreement that SMA isn't a wicked aspect of my life, I have things about myself which I have no control over and certainly can not change. It does not make me or the disease wicked...It just is... I must completely disagree that assigning titles such as "hero", "angel", or "inspiration" make someone lesser or to be ridiculed. We do not know that family's journey to using those words to describe their loved one and should not judge what we do not know.
In conclusion, I know August is a month of passion for the SMA Community geared towards awareness. Don't worry about the wording of your awareness posts if you choose to include warrior and angel in your posts. In my opinion warriors are individuals who fight battles; whether those battles are fought with the mind or with the body matters little in the long run. If you are fighting for something, anything, you are a warrior to me. Fight on

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