Trapped in a Box

I’m stuck in a box…a glass box. It’s square. A lot of the time I can sit in the middle and be ok. Be happy. I can be centered and focused. But then something comes up. I get up to walk away and I hit the glass. I turn around to get out another away. I hit the glass. I look up…more glass. That’s what living with a disability is like, especially one where you aren’t in a wheelchair.

This month has been kind of the last straw for me. I’m tired of dealing with the box. I want to break the glass. I’m too disabled for things to be easy (meeting guys, exercise, activities, walking) but not enough for people to believe I’m actually disabled. I’m questioning everything. I’m not sure that i want to treat others the way they want to be treated anymore because that’s not the treatment I get. I’m not sure that I want to be so open and let people in anymore. I think I would rather go back to being standoffish and closed off. I’m not sure I want to blog anymore and try to convince myself that everything is ok and that I’m actually helping anyone. People would much rather listen to the phoney inspiration of pretty people who in reality, aren’t very nice.

I’m at a crossroads now because I can’t break the box. I’m trapped in it whether I like it or not. So now I just have to choose the path.

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4 thoughts on “Trapped in a Box

  1. Jackie, I wish that I could say something here to make you feel better but I can’t, others may try to but the reality is that as time goes on you will learn to deal with things in your own way. I am 56 years old now and have a type of Limb Girdle MD. I was diagnosed when I was 7 years old. When I read your blogs they bring me back to when I was your age and how I felt growing up. Like you, my disability was not easily detectable, so all the things you write about also applied to me, dating, walking, exercise, or just simply going someplace unfamiliar and not knowing how you would navigate once you got there. I did however get married, have a son who’s 26, and live in a log home like I wanted to growing up. The internal battles however have never gone away, I fight them daily. The fact that I’m even writing this and sending to a person that I don’t even know surprises me because I’ve always fought my battles alone which I do not recommend. I once started to write a book, I titled it “The Invisible Disability”, but as I got into it I realized that I’m not a very good writer. The way I deal with life most of the time is allowing myself a pitty day once in a while, and except that’s it’s OK to do that, then I’m back on track for a while. I do not have all the answers, I can only tell you that I TRULY understand what you are feeling because I feel it every time I read your blogs. You have proven to yourself and others that you can overcome, but you just get stuck once in a while and that’s OK. I hate to feel your sadness today but tomorrow is another day. I am here as I’m sure many others in your life are to any time you need to talk.

  2. Not just we in W/C’s, we all go through it. By me getting involved working out at the gym and pool things are much easier to accept. Right now you feel like a minority among your peers. While I’m at Goodwill Fitness or Waterworks, everyone there has a disability, and we all work to help each other.Its like a family. If someone needs help with something and the trainer is busy, we do our best to help that person. And its not just bad backs or broken bones. There are blind people, stroke victims, Quadriplegics, Paraplegics, etc all doing our best to succeed in society.:-) If you’d like to check them out, both are online: Goodwill Fitness & Technology.com in Santa Ana and In Motion OC.com in Irvine.Let me know if you have any questions or concerns:-)

  3. Choose your weapon, a stone to throw, a rock in a slingshot, a bullet from a barrel of a gun and break the glass. I am not any type of writer like you, I don’t consider my writings to be anything worthwhile and meaningful, unlike yours however. It is very reasonable to have bad days and sometimes it feels like the bad out-weigh the good. One thing I know for sure…your writings are meaningful and can be inspirational as well. Trust me in that also having the same disability, your writings are like reading about me except they aren’t about me directly. I have had struggles with the same things and came out ‘ok’ on the other side. What pretty girl in her right mind would want a disabled man, a man who was scared to consider having a child, a man who couldn’t keep up with them during any sports, climb steps at venues, dance with them at their wedding or just do the ‘man chores’ around the house.
    I will honestly say at one time I was the above. I didn’t believe there was anything out there for me. I perservered and here I am, many years later…married to a beautiful lady, still working full time for a prestigious company, have a daughter by marriage and attend sporting and musical venues, cook, help clean, laundry etc…how do I do it? Determination? Stubborn? Refusing to give up or quit?
    The only thing I could ever say I gave up on is having a child. I did that however out of the well-being of the child and the fear of what could have been and instead am able to give all my love to a wonderful young lady who is very deserving and in need of a loving role model. It was a big step to have that procedure done yet however one i’ve never regreted and doubtful I ever will.
    I’m pretty sure the list of things I do is as long as the list of things I don’t do.
    Your limited to the glass box if you let the glass keep you in solitary confinement…but reading about you, I know you will find the strength and courage to shatter it and break it down because your like me, you know life has more to offer.

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