Daring to be Different

My older son, my service dog, and I

This week is my 36 Birthday (I know, I know, I am old). It’s not that this is a “millstone year” (Although if you ask me, every year is monumentous, 364 1/4 more days I have fought this war known as life and won. I am alive to tell you about my war, and its many crazy battles). It is interesting that it has taken me close to 40 yrs. to start to know myself. ( By “know myself” I mean much more than my favorite color, which believe it or not is not pink). I mean more like being comfortable in my own skin.

There is some need in our society to have a level of sameness. When there are in fact many differences, between people. Race, religion, economic status, gender, experiences, whatever it may be; there is some need to be the same. Despite our differences, we are all the “same”. Yes, to a point I get it, we are people trying to live our lives. I think however that is fear people have of the unknown. Rather than asking and answering each other questions, we (people) make assumptions and fear the unknown.

But people are different in many, many ways. For example, I have spent the better part of twenty years trying to show the world I am just like everyone else, “I just walk differently,” “I walk with a walker”, finally for almost a decade now, “I use wheels not feet.” But in fact, I am not like everyone “else”. Whoever “they” are. I have a neuro-muscular disease! Which, means every part of my body that has a nerve: toes, eyes, sexual organs are affected by said disease. I not only cannot walk, but I also must have grab bars in order to stand pivot on to the toilet or into my bed. No, I am not paralyzed (I continue to lose sensation, and coordination in my entire body starting with my toes.). The muscles in my throat are therefore affected and delayed. When I swallow my throat does not block the esophagus causing food or water to enter my lungs. Luckily for me; but sometimes scaring bystanders, who wonder why anyone in my entourage is not coming to my aid; I have a very strong cough reflex. Through a long, loud, and annoying series of coughing fits I am able to expel said object on my own. Those are two mere explanations of how someone with FA can differ from someone else using a wheelchair.

Me at Children’s Hospital of Philadelphia

The point is that there is so much more that makes up individuals than what is apparent at first or even the fifth glance. Alternatively, I also have the past first-hand experience as an impoverished single young mother. In my mid-twenties my older son, my service dog, and I were homeless. It was probably one of the hardest points in my life. Simultaneously I was trying to finish my last semester of undergrad and my son was finishing kindergarten. We were lucky enough to meet people along the way that eventually helped us get a subsidized apartment, and my son and I both were able to graduate that spring.

So, there are many different parts of me that can somehow relate to many different groupings of people. To say I am the same as everyone else, “I just use a wheelchair” is far from accurate and I am learning to be more than “ok” with that.

3 thoughts on “Daring to be Different

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.