Tag Archives: Abilities

Finding Determination Through Fear.

19 Oct

A few days ago I was talking with a friend of mine, and he asked me to explain my absolute worst fear in life. Though some classic answers popped into my head, like ending up alone and losing the people I love, I knew my absolute worst fear. I tried to say it, but couldn’t. I felt like I was about to cry. However, after a period of silence stretched over us like a blanket, I finally spoke.

“I’m afraid of the day when I’ll no longer be able to walk.”

I spent my entire childhood learning to walk so I could be as independent as possible, despite my Cerebral Palsy. Before my intense operations, I learned to walk in my own way, my knees knocking together as I put one foot in front of the other. During the years I spent on a t-ball team, I loved the feeling of running to first base. Even though I typically got out before making it to first base, I ran with all my heart just like everyone else on my team. I ran in my own way, but it never stopped me from trying.

After my first operation at the age of 10, I had to completely relearn to walk after having my femurs straightened out and kept in place with rods. One year later, when I got the hardware removed that was placed during my first operation, I had to relearn to walk yet again. See, not walking was never even an option for me. I wanted to be like the other kids my age, and to do that, I had to be able to walk. I had to be as normal as I possibly could. Even when I was faced with physical pain that made me want to curl into myself and give up all together, I kept going. Every day, I literally walked towards my own independence, one step at a time.

Because I spent so much of my life struggling, and ultimately succeeding, to walk, the thought of reaching the day when I’ll no longer be able to walk is completely terrifying. In so many ways, when I reach that day, it will feel like a kind of giving up. Though I plan to walk for as many more years as I can, I am scared of the day when the pain will just be too much, when walking will be putting too much strain on my body. It’s especially frightening because I know how much physical pain I’m in on a daily basis currently. The realization that I am in so much physical pain and I’m only 21 is terrifying. Trying to imagine my level of pain when I reach age 30 is nearly impossible.

That is one great thing about fear though. It has the ability to help us find the determination and strength we didn’t know we had. Yes, my worst fear is seeing the day when I will no longer be able to walk. However, I’m not there yet. I am a long way off from that day. Today, I am able to walk and do the things I love, despite being in pain. Today, I am able to push through the pain, because the result…the view at the top of the mountain…is worth it. The happiness, joy, and pure bliss of the destination weighs so much more than the pain of the journey.

The fear lingers in the back of my mind, the fear of knowing one day I won’t be able to get to the top of Max Patch, my absolute favorite place in the world. However, the fear also gives me the strength and determination I need to continue doing what I love. Yes, one day I may not be able to walk because of the amount of pain I am in. But I’m not there yet. I’ve still got plenty of fight within me.

At the top of Max Patch (October 2013)

At the top of Max Patch (October 2013)

When the stars align…with Easter Seals UCP.

1 Dec

Easter Seals UCP is a non-profit organization that supports families dealing with disabilities and mental health challenges. Over the past few months, I have been researching different Cerebral Palsy organizations to see if I could come across any information tailored towards adults with CP. Though I still haven’t found much useful information, I did find Easter Seals UCP. Upon looking at their website and the numerous blog posts by families dealing with disabilities, I was inspired. I was inspired not to focus on my own physical issues at the moment, but instead chose to focus on something that has just been coming to life since I started sharing my story of CP: my role as an advocate.

If you would have told me two years ago that my current primary focus would be using my own story and my personal experience with CP to advocate for kids with disabilities, I probably would not have believed you. I have never imagined that talking about my own struggles would be something I’d be able to do…much less want to do. However, since that is how things seem to have evolved, once I realized there were numerous Easter Seals offices across every state, I knew I had to get involved. The need to get involved led me to find out if there was an Easter Seals UCP office in Asheville, and I found it.

After connecting with some people in the Easter Seals UCP Asheville office through email and phone conversations and getting such a positive response regarding my desire to get involved within the Asheville community, I could not be more excited. At this point, I’m unsure how things will progress. However, after learning that the Asheville office works directly with families in the community, I asked if there had ever been any kind of program implemented that deals with the emotional barriers that a disability presents. Though there isn’t currently a program in place within the Asheville community that deals with the emotional side of disabilities, I told the Easter Seals Asheville office that I felt it would be incredibly beneficial for the community and that I’d be willing to help in any way I can. Long story short, I’ll be meeting with those at the Asheville office to discuss ways in which this kind of program could be implemented as well as general ways in which I can work with Easter Seals as a CP/disabilities advocate within the community.

Words cannot even express how excited I am about this possible opportunity. However, I know that without this blog and the incredibly supportive community of WordPress, I would not have been able to reach the point of talking so openly about my disability and what I’ve faced. For my entire life, I have struggled with the concept of belonging. However, I guess the part of my life that I was trying so hard to escape from was where I needed to be all along. Even though I didn’t have the opportunity to talk with someone who knew what I was going through during the years of my intense surgeries and physical therapy, I want to be that person for other kids with disabilities, and I want them to know they don’t have to go through it alone. Therefore, to all the families dealing with disabilities and the entire Easter Seals community, thank you. Thank you for helping me find another dream to strive towards.

Copyright: Easter Seals UCP.

Copyright: Easter Seals UCP.

The problem with the word ‘disabilities.’

26 Sep

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” -Fred Rogers

Due to the presence of a new person in my life, I’m slowly beginning to understand what has set me apart from so many others with a similar disability (and even those who are non-disabled): my drive. Yesterday, this particular new person in my life said: “You have incredible drive. It’s what I like about you. If you’re standing at the bottom of a hill and you know that you’ve got to get to the top, you’re going to find a way to reach the top, even if it means that you have to push yourself harder than ever before. I admire that so much.”

Even though I’ve known that I’ve had an incredibly strong drive for the majority of my life, giving up or walking away from something just because it’s hard has been something that I don’t consider often simply because in my mind, in terms of my disability, I’ve never had another option. I pushed through because I had to. However, due to the current new person in my life, I’m beginning to see that my drive has the potential to help not just me, but so many others around me as well. Also, over the last few months as I have done more introspection, I have come to understand that focusing on my abilities is a much better way to live rather than focusing on the ways that I am limited on a daily basis. Though that may sound obvious, I can’t tell you how easy it is to slip into the hole of self-pity. Even though for my entire life I have never wanted to accept pity from others, I place so much pity on myself through my own thoughts and actions. Maybe that has to do with my low self-esteem or something else. However, I have a gut feeling that this new person in my life has the ability to change many of the negative outlooks that I’ve had towards myself for so long.

Though I may say that I have a physical disability on a regular basis, maybe I’m focusing on the wrong things. Maybe I should be focusing on the things that I’m able to do rather than those that I can’t. I know from personal experience that this is so much easier said than done. However, when a new person has come into my life who thinks so highly of me, I owe it to both of us to at least try.