I’ve been living somewhat of a facade for such a long time, trying to make the world around me and myself believe that I’m just like everyone else, aka not disabled. Trying to wear the right clothes, wearing makeup, imitating my peers, and being generally agreeable so people will like me.
Now here I am, in my thirties, wondering how much of how I look and how I act now is a result of being true to myself or a result of my trying to conform for so many years. Part of me thinks I would dress like this and be this way regardless but part of me thinks maybe I’ve just gotten so used to it, that I don’t even know the difference anymore. That maybe I haven’t even tapped into my real self yet. Maybe my real self has pink hair and a couple of tattoos. Maybe my real self wants to just say what I believe to everyone whether they like me or not afterward. Maybe I have a super outspoken person just waiting to get out.
The reality is, I stand out no matter where I go. Even if I look just like every other person around me, people will inevitably still stare when I try to get out of a chair. They’ll stare or get quiet when I walk by because of my limp. Most of my life, I’ve just wanted to be invisible. But there’s been this nagging part of me lately that says to just say screw it and go all out. If people are going to stare at me no matter what, why not give them something else to focus on?
Maybe that would just be another way to try to get the focus off of my disability though. The reality is that I can’t control other people. No amount of dying my hair or looking “different” is going to stop people from staring at my limp or noticing various aspects of my disability. I think it’s good to embrace my difference but I shouldn’t do it in order to try minimize something I’ll never be able to control. I think that’s one of my biggest issues…I want to control everything, including other people. I’m not able to control my body or what it does (or even my mind it seems sometimes) so I think I have this deep seated desire to change everything else around me when in reality, it would be a lot more helpful to have the opposite attitude. I can’t control my MD so it’s pointless to try to control everything because some things, no matter how annoying it may be, are just out of our control.
Disability & Determination 
Hi Jackie,
This is my first time visiting your blog and I am so glad I did. Thank you for being your authentic self and for sharing your story while living with MD. This post on control really resonated with me and I am so thankful you shared this because I think it is something so many of us think about and struggle with on a daily basis. Even after the pressure-filled years of grade school and college the struggles of conforming to fit the expectations of others is something I know I still struggle with. Being able to release control and understand that some things cannot be altered is a skill I continue to learn each day. Thank you and I look forward to continue following your journey.
-Nick
I’ve worn every hair color found in nature, and I’ve worn fad fashions at every stage of my life, through today. I’ve been overweight and I’ve been thin. I think each of these iterations represented exactly who I thought I was at that moment. I squawk about getting older (it hurts!), but I keep finding today’s version of the real me as I get older, and I feel more at home in her skin. Cheeseball, matronly, and know-it-all as it sounds, you’re exactly where you’re meant to be–pink hair or blonde, tattooed or not or not yet, navigating your path. (Remind me of this when I lose my sense of direction, will you?)
Hi Jackie,
I can definitely relate to your feeling of “wanting to be in control” of everything in life and wanting to conform to the norm of others. As you mentioned, controlling the stares of others is almost impossible. No matter how much we try to change our appearance, we will always receive stares and judgments from others. Even if you were to dye your hair a different or brighter color, the stares may be directed toward your hair, rather than your limp! Judgments from others are always going to exist (unfortunately), but the best thing we can do is not let the stares or judgments affect us negatively! This is easier said than done, and I constantly struggle with the issue of not being able to control everything in my life. Just know that you are not alone in this struggle. Once we embrace the things we cannot control, life will definitely be easier!:)
Jackie,
YES. Its all out of our control. Worrying about this and thinking about that… It doesn’t matter, no matter how much our society is shaped to make you think so. It’s refreshing to hear this realization you’ve had. Ive gone through the same scenarios, finding myself dressing and wearing a certain style just because friends wore the same and I was trying to CONTROL my ability to fit in.
“Maybe I haven’t even tapped into my real self yet.”
Thats pretty deep, but also pretty exciting don’t you think? It makes me feel like I’ve been robbed of something special, but also have the chance to steal it back.
-Dillon
Hi Jackie,
This whole post illustrates the exact feelings of all of us at many points in our lives. There is a constant need for acceptance and affirmation from people we don’t truly know or care about really. If we don’t know them, why do their stares bother us? Your disability does not define you. Stares from others are out of control and I too am trying to make peace with the things I cannot change. I’ve seen those stares when I help feed my friend who has ALS out in public but just like you mentioned, he also embraces it now. It’s just going to take a little time and a few more trials of being out in public while possibly educating strangers on muscular dystrophy, who knows! 🙂 Thank you for letting us into your life, you have an awesome blog.
Jackie,
This is my first time on your blog and I would like to say that I find your honesty to talk openly about your journey and personal struggles very inspiring. I particularly liked this post. I feel many of us have experienced societal pressures at some point in our lives in order to not be judged by others and can relate with you. However, it is so important have a different mindset and not allow others to influence the way we choose to live our lives. I believe in the importance of having a positive outlook, staying true to one self, and living up to one’s own expectations. This can make the biggest difference in the world. It is so important to practice self-love, and be confident in the decisions one makes to gain a greater sense of fulfillment and happiness. Great post!
Karla