At times it feels as though this symbol permeates every aspect of my life down to the minutest detail. Because I cannot cook myself my disability dictates that I must eat either when there is someone around who can cook or when premade meals are within easy reach or purchase. It dictates when I can see my friends and for how long because I cannot drive and the area in which I live does not have reliable public transportation. Unless I’m driving with my sister or some other female friend who is physically capable of lifting me most of my trips are “chaperoned” because I can’t make use of restroom facilities independently. Yes that is an embarrassing thing to admit in a public blog but people with disabilities tend to develop a very blunt way of speaking over time and that’s just the way my life is. By the way, having a third person attend both of your proms because neither you nor your boyfriend could have gone otherwise is a little uncomfortable. Disability can impact not just the person forced to deal with it most intimately (I refuse to use the phrase “suffer from it”) it reaches out and forces a person to completely change how they think about a myriad of things, and for the people that are closest to the person in question it’s not a temporary adjustment.
I have the best Little Sister in the world I swear. I’m so happy that she is getting to pursue the two greatest passions in her life at the same time.She is an amazingly talented and wonderful person and the more people that know this the happier I am. Morgan is two years younger than me and by the time she was five she had figured out how to pick seven-year-old me up and carry me a short distance. She has been able to push my manual chair on flat ground since before she was tall enough to see over the top of it, it took her a while to graduate to navigating hills and curbs, but I think she had those mastered by the time she was ten. People have a bad habit of talking about me as though I am an inanimate object who cannot speak, well okay maybe not inanimate because if I have ever been referred to as “it” rather than “he” or “she” (though I have been mistaken for a boy or young man on more than one occasion) I do not recall, but definitely as though I were a small child or pet incapable of independent speech. I remember clearlymy four-year-old sister glaring indignantly at someone and saying with all the irritation a four year-old can muster, “ask her she can talk!” I never heard her say, “duh stupid” out loud to someone’s face but I know that’s what she thought and still thinks whenever anybody does that to me nowadays, which does, unfortunately, still happen. Growing up if she had to rearrange and sometimes give up plans entirelybecause she was the only one who could stay home with me in case of emergency. She was also the one who pointed out rather forcefully to my dad when I was 16 that I was perfectly capable of staying at home alone for a few hours and since she had a cell phone and I had been able to dial a phone since kindergarten there was no reason why they should have to stay home from a movie just because she was going to a concert with friends. I think she had been planning to go to the concert for several weeks and my parents just sprung the fact that they were going out on her at the last minute, so she was having none of it. She is one of my quickest defenders and despite her apparent youth one of my ablest advocates.
IF I ever have children (and it’s a big if right now) I hope at some point that my firstborn child, whether it be boy or girl has the chance to have as wonderful a relationship with their younger sibling as I’ve had with mine. I can only hope that I have influenced her life half as much as she has mine.
So I’m once again up obscenely early. I was sick as a dog Saturday night/ Sunday morning. As well as losing every bit of food I had eaten in the past six hours I was reminded of what friendship and love really are. Friendship is staying up with someone when they’re sick despite over 400 miles between you two and telling her you’d be there to help her clean up(which causes to her giggle and feel loved because she can think of at least 100 yucky things you’d rather do than that) and she knows without a doubt that you would. Love is still calling said girl Princess even when she feels more like the lowest scullery maid after being sick that long. By the way, love was the answering smile you couldn’t see, because she knew she’d always be your Princess no matter how sick or wore out she she ever got.
Okay I admit I’m writing this ridiculously early in the morning but writing when other people are asleep is nothing new for me. I have had seven major surgeries in my life thus far and from those 11 scars most of which are still plainly noticeable, or would be if I were not wearing clothes. As a child I hated them for no other reason then as a direct result of the surgery I move than expected to willingly put myself through the torture that is physical therapy to incrementally increase my mobility and regain the limited function which six weeks in various casts and, in the case of my back surgery, laying in a completely flat bed for a week (on my side) before they would let me sit up, had stolen from me.
Before everybody panics and I get several frantic phone calls that is NOT my wrist! Promise! Google image search is wonderful. That being said it very easily could have been when I was 14. I remember staring at the broken pieces of a Mason jar which I had deliberately chipped against the concrete table until two small pieces lay on the tabletop. The light sparkled on the jagged edges very prettily and I remember thinking that it was kind of sad that I would miss seeing the sunshine through my homemade stained-glass, stained with my blood of course. Fortunately right then my cousin and his best friend came up. I passed off the broken jar as yet another example of my stellar lack of coordination and life continued.
“for 72 hourrs I’m more than just a damn chair……………
