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Wednesday, April 22, 2015

It's All Part of The Plan: Living In a World Where Nothing Is Spontaneous

A lot of people wonder what it is like to have a disability day to day. The truth is that it is fun and rewarding and stressful and challenging and ordinary and extraordinary all at once- which sounds very much like a description of life—with or without a disability. For every eye- opening, "no way,” “write a memoir” moment, I probably have five others that are painfully boring and feature me eating pizza or trying to figure out how I didn't notice that I was sitting on my workplace bathroom key for five hours. However, although my life with cerebral palsy includes so many of the humdrum daily encounters as any other life, I will be honest and say there are moments when it is very clear that my disability makes me “different.”
 If there is one thing I could say to summarize what makes my life unique from that of the average 22-year-old it would be “damn, this ‘existence’ gig takes a lot of planning.” In addition to using a power wheelchair, I also have a team of eight personal care assistants who I must rely on to help me with activities of daily living that most people do without thinking. Those are all the tasks like bathing, dressing, going to the bathroom, getting out of bed…basically, if it's a task you thought was reserved for sacred solitude, I probably have company to accomplish it. When someone who you may have interviewed and hired just days before has to put you on the toilet, you develop a talent for awkward ice breaker conversations that would make your college orientation leader look like a total rookie.
But planning your daily activities, the basic things necessary to survive, is no small feat. The word spontaneous may as well belong in another language, because every aspect of living with a severe physical disability is anything but spontaneous. Spontaneity is like that distant relative you have seen in the photo albums and heard a few weird stories about, but never actually met. You know he exists and that others have met him. But when you have a disability, he is just an idea, so you smile, and say that he sounds like a lovely guy… then; go back to figuring out what time someone can help you bathe next Friday. If that cute cafĂ© you wanted to try can accommodate a wheelchair. If you can get a ride to work, to school, or to a friend’s house. Normally, the only spontaneous thing you expect is the spontaneous combustion of your ancient paratransit bus. I am used to some serious planning. Long ago, I accepted that spontaneity and I, for the most part, would be strangers.
Most days, I am OK with that. But on many other days, spontaneity is someone I would like to meet. At a time of life when most of my peers can make spur of the moment plans, almost everything I do has to be decided on and set up a few days in advance. There are buses to schedule.  There are personal assistants to arrange. Often, I must ask assistant A if she minds coming later than usual so I can go out to dinner but still be home before my shift with Assistant B or the dreaded full bladder.  I have to be conscious of what I order. The second Coca Cola is not the carefree refill it would be in someone else’s life. More fluid equals more pee, and even peeing is scheduled, so I can make sure I will not be squirming uncomfortably somewhere without anyone to bring me to the bathroom.
This is not to make you feel sorry for me or to make you think that my life is terrible. My life is good and happy, but every now and again, I feel a strange longing for a spontaneity I have never had the chance to experience. I think of what a thrill it would be to decide to go to a movie ten minutes before it starts. How weird and wonderful it would be to hop in the car to pay a surprise visit to a friend. To stay up all night because I could and not have to worry about what time someone was coming by to put me in my bed. To not have a schedule so delicately intertwined with those of the people who button the jeans, comb the hair, and take over where my gently used limbs fail me.
There can be something beautiful about the way my fate helps me understand interdependence. The way it helps me to know what it means to need someone and to be needed. The deep, sometimes too-real knowledge of what happens when someone you depend on lets you down. But for all the things it teaches me, it can also be so frustrating.
Most of my peers make all their plans at the last minute. Not too many twenty two year olds want to think about the logistics of a lunch date that will happen next week. Not too many of them are anxious to jump online and investigate which restaurants in the area are wheelchair accessible. To many of them I represent extra time, extra hassle, and extra considerations at a time of life when convenience is most enticing. If the average Joe has a choice between spur of the moment plans and an easy ride in his buddy’s new car or waiting for a crappy accessible bus with me, chances are I will not be his first pick. There are no words for how isolating that feels because the unspoken thought behind it is “it’s so much work to be your friend.”
Sometimes I feel sandwiched between two generations. Young and in my prime, checking my Facebook and listening to all the new music. Planning for my first job and thinking that however far into the future they are, I am already in love with my children. At the same time, in this sandwich, I feel very old. I have to think about who will take care of me and hope that my needs will not be a burden to anyone. I look at elderly people and I feel like in some ways, I belong with them, because I know what it is like to depend on others when the body no longer moves as it once did. I laugh to think that most people’s greatest fear about getting old is losing the ability to walk. I am not afraid when I think of old age, because in many ways, my body is already there.

When I watch other twenty somethings hop into their cars without a second thought, go to the bathroom in two minutes, and change their clothes whenever they feel like it, I wonder if they consider the freedom they have. I’m certain that most of them don’t. They are young and spontaneous. They have the luxury to think about only the next moment. They don’t understand what it is like to live in this “sandwich.” They are young. They don’t understand and I cannot fault them. They don’t understand, but sometimes I wish they did.

12 comments:

  1. I relate to this so much! Everything takes planning and not everyone understands that. I really appreciate you giving a voice to this aspect of living with a disability.

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  2. This is awesome! Just yesterday an able bodied person was telling me how great it would be if she had someone to clean up for her, do her hair, and everything else for her. In my head I was like "you have no idea how lucky you are."

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  3. I remember in my 20's when I was struggling to get my electric scooter around with me from my home out country I used to think - geeze it just takes so much ENERGY to have a disability!

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  5. You said it better than me
    http://whatyourdonotknowbecauseyouarenotme.blogspot.com/2015/05/little-things.html

    And it is kind of weird how much are blogs look-alike

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  6. Have you ever considered getting a handicapped accessible van and having your personal attendants drive you places? It helps me be a little more spontaneous although like you I still have to plan for a shift change. So I can never go out to lunch around 12:30 because there is a shift change at 1pm so I would be alone for an hour. I also hear you about planning what to eat and drink. I also try to make sure the restaurants my friends chose have something for me to eat by myself. Maybe it's a pride thing, but I don't want to be fed in front of my friends. I've also had problems with the bathroom thing from time to time.

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    1. I do have a van, but my PAs at school can't assist me outside of the dorm unless I pay out of pocket, and some people aren't comfortable driving the van. I'm lucky to have a van, but I can't always use it

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