I realize how much of my life I’ve played the victim and how long I’ve used my disability as an excuse not to do things, or to allow it to make me afraid to do things. So in recent years, now that I’ve tried really hard to break out of that pattern (and trust me, an easy thing to do that is not) I realize how blurred the lines have gotten for me when it comes to living my life and knowing my limits (apologies if you now have the Robin Thicke song in your head from that earlier reference).
Take, for example, something I was considering doing for my birthday this year. It’s kind of a milestone year but instead of planning some huge party or even trying to plan anything where invites are necessary (because those kinds of things inevitably lead to disappointment), I thought I might like to go to Deer Park Monastery for a Meditation Retreat weekend; something I’ve been wanting to do since like college. I started to do my research online and then I remembered something from when I went to a Zen Center in high school for my World Religions class (one of the best experiences of my life). In order to meditate, you have to sit…on the floor. Back then I was much smaller so getting off the floor, though not easy, was not the near impossible challenge it is for me today. I weigh a lot more and have invariably gotten weaker it feels like. Then the questions came…”How would this place handle that?” “Should I call and ask?” “I want to be able to do this by myself and not have to have some poor monk lift me off the ground.” Suddenly, it didn’t seem like such a great idea anymore.
This is the flow chart of how a lot of things tend to go in my life. I don’t thirst for a relationship or for money…I thirst for independence. I want to be able to do as much as I can by myself in life. I don’t like to ask for help (though with friends, I have gotten much better at this over the years). I want to go on a trip by myself and then I think about that experience I had in Ireland, where I wouldn’t have been able to get on and off the ferry without the help of others. How would I have handled that if I went somewhere alone and not with an organized group of people? In theory, I’m sure I would have figured it out but you never know.
I get flat out angry sometimes when I see people posting things on Facebook about “living life” and “there’s no excuse not to do what you want to do” or “see the world” or whatever. Sometimes I want to just scream at the computer screen, “It’s not that easy for some of us!” I hate the store REI because I feel like it’s a slap in the face for everything that I can’t do. I feel like the people that work there and shop there have no concept that people exist in the world that are completely unable to mountain climb, hike or ski (a terribly closed-minded thought, I know). The reality is, without even playing the victim, it simply is not that easy for some of us. The world isn’t made for those with disabilities in a lot of places and well, it sucks.
My brain has become so convoluted, I no longer know when I’m just afraid to do something, or when there’s a real chance I might not actually be physically able to do something. I sat on the floor today in my house just to see if I could get off of it without holding on to something so maybe there would be a glimmer of hope I could do the Meditation Retreat. I was able to which made me feel really good, but it was not without immense struggle. I think I should probably start lifting weights again to help strengthen my arms so they can more effectively lift up the extra pounds my tiny frame now carries on it.
I look at ads, I look at other people’s blogs, I read about other people’s adventures and yes…I do that horrible thing where you compare your own life to theirs. I feel like I’m not living my life to the fullest. On the one hand, I have a great life and honestly, if I died tomorrow, I would probably feel content (I would also be dead though so feeling content probably wouldn’t really be much of an issue there) if I was able to look back on my life. But in the current day-to-day there’s still so much I feel like I want to do but I don’t know if I can. I want to just be free and not let anything hold me back…including my own mind but sometimes I’m just not sure how to do that. I watched a video the other day about an amazing little boy with Duchenne MD who was literally carried up and down the Grand Canyon by his family friends so he could realize his dream of dipping his feet in the Colorado River. It brought me to tears but when it comes to my own life…I sadly would probably never even ask my family and friends to be able to help me achieve such a dream. I feel like I was blessed with the ability to walk and to stand on my own two feet, so I should be able to do anything I want to do on my own, without help. Yes, I am a stubborn Irish-German girl.
I spent so much of my life depending on other people and not being able to do things alone that now I want to do everything alone…perhaps a little too far on the other end of the spectrum eh? I don’t know…it’s just very unsettling sometimes. I don’t really know what my version of carpe diem looks like. I don’t really know the difference between can’t and won’t for myself. I do know though that I’m not content with how little I feel like I’m out in the world living life. I’m not content that there are still so many items to cross off my bucket list. Like I said after my car accident…it’s time to start living…whatever that may be for me.