I started thinking about my previous blog, about 9/11 and how fast life can change, and retelling my memories of that day made me reminisce about all the fun I used to have traveling into NYC, and going out, in general. Prior to my accident (June 2005), I was constantly on the go. I loved to travel, and made regular trips into NYC and PA. Half of my family lived in the Pocono mountains of Penssylvania, and one of my best friends and ex-boyfriend lived in other parts of PA. I'd been making the two hour trip, to and fro the Poconos since my mom moved there, when I was nine. Two hours in a car was no big deal for me, and driving the route to my family's house was second nature. Besides that, I just enjoyed traveling. In college I made annual trips down to Orlando, to Disney World, and a couple of road trips up to Maine. Once I graduated college (and started making real money), I started making trips outside the country. In the years just prior to my accident, I went to Italy, Puerto Rico, and Canada. I've always enjoyed going out. I regularly dined out, went shopping, to the movies, to the beach, to parties, dancing, site seeing, and a variety of other things.
I would love to see more of the world, and go out more, but most times, the cons of paralysis, outweigh the pros. I find myself doing less and less, because the memories are too painful, the compromises are too many, and/or the preparation, planning, and health concerns, make the experience more annoying, than enjoyable. Most people don't realize, or consider the amount of effort that goes into to everything I do. Just getting up, into my wheelchair everyday, requires someone else, bathing me, dressing me, grooming me, feeding me, and physically transferring my body. All of that has to be done, just for me to be able to get into a car, let alone determining if places are accessible, or if I'll need additional accommodations. I, in the meantime, am always concerned with the unpredictability of my body (my tollerance for sitting, blood pressure, pressure sores, skin breakdown and incontinence issues). I have concerns in the back of my mind, that the average thirty year old, just doesn't have. It's not as simple as just rolling out of bed, hoping into the shower and throwing some clothes on. I can't just pick up and go on a whim, because I'm completely reliant on others. On top of the logistics, and physical challenges, I'm constantly weighing the emotional pros and cons of everything I do. Most times, the enjoyment factor doesn't cut it for me, and I rather not go through all of physical trouble, to do something that will ultimately upset me, more than entertain me. Unfortunately, most of the enjoyments of my "old life" are more painful than pleasurable, and therefore I avoid them.
I've flown to FL since my accident (twice).Both trips were to Disney World. The first trip was for my best friends wedding, and was a short stay, mainly comprised of activities within the resorts. The second trip was for eight days and we stayed at a resort and went to the theme parks & Downtown Disney. I used to Disney go every summer (as an adult, on my feet) and am extremely familiar with most of the Disney World attractions. Let me tell you, it's like night & day, traveling paralyzed, versus traveling able bodied. Disney has made a lot of accommodations for handicapped people, and much of the transportation and certain attractions are already setup with accessibility in mind. Even so, navigating large crowds, restaurants and shops, have not been very pleasant experiences for me, in my wheelchair. Not to mention the unique experience of flying paralyzed, which brings with it a ton of unpredictabilities, like lay-overs, and delays, which can be extremely taxing, and dangerous, because of the risk for skin breakdown. Let's not forget, all the preparations that need to be made in advance (renting equipment, hiring or bringing a nurse/aide, medical supplies, accessible transportation, needing transfer assistance, etc.).
You'd think you would stand out, sitting in a wheelchair, and people would be mindful, and move out of your way, or help you, but I've noticed that to be the exact opposite of reality. People are so wrapped up in themselves, that they have literally tripped over me, crashed into me, stand obliviously in my way and create obstacles, more times that not. Stores and restaurants often cram the maximum mount of merchandise and/or furniture into their space, which makes it near impossible to navigate, without bumping into displays, forcing people to move, or having to rearange things, just to get by.
Going into NYC used to be my second most favorite outting, outside of trips to PA. I haven't actually been into the city, since my accident. It's something I miss very much. I've been wanting to go for some time now. I'm just so accustomed to going by train, and subway by foot, that I'm a bit intimidated at the thought of figuring out how to get around in a wheelchair. Driving into the city is a headache and more expensive. I do miss going to the museums, walking around Time Square and hanging out in Chinatown. It's not that it's impossible, it's just a hassle having to come up with all of the routes I'd need to take. Not to mention, I'd be relying on someone else for transportation & assistance.
NYC is not nearly as wheelchair friendly as Disney. It is noisy, messy, crowded and fast paced. Its a city, not a theme park, so here aren't designated people, every ten feet, to help you out. While New Yorkers aren't as obnoxious & rude as tv portrays them, they are busy living their day to day lives, not paid employees, ready & willing to make your trip pleasant. Certain places, like Museums, plays, or Madison Square Garden, would probably be the least hassle, and the most accessible. I've thought of attempting to go into the city so many times, I just haven't followed through with it, yet. Plus, I feel as though there are just certain aspects of the city that I won't be able to enjoy anymore. I can't imagine having fun in my chair in Chinatown. It's challenging enough to keep up with hustle & bustle on your feet. The shops are mostly all tiny, cramped & cluttered. Many shops have steps, or a small step, or curb to tangle with and I'd barely be able see a thing above the crowds. It's always congested, and the sidewalks are full of hazards, like merchandise for sale, and garbage.
I used to LOVE going to mall. If you've ever been to New Jersey, it's evident that we Jerseyans love our malls. You can't drive through our state without seeing a huge mall, about every 15 miles. I don't mean strip malls, or outlet malls either. I'm talking about, multi-level, indoor, several big name department stores, food court, sit down restaurants, map necessary, shopping malls. From the moment I got my drivers license, until the day of my accident (1997-2005), I can honestly say, I went to a mall at least once a week. As a teenager, the mall is a fun place to hang out. In college, my boyfriend spoiled me with shopping. As a teacher, I was earning a real salary, and was single, with money to spend. I'm not rich, nor I have ever been in debt (besides medical bills, post accident), but I've always enjoyed to shop. I enjoy window shopping, buying gifts for other people, and used to adore clothes shopping, for myself. Since my accident however, I tend to avoid the malls and do almost all of my shopping exclusively online.
I was never bothered by crowds, until I was in a wheelchair. I'm partially bothered due to self consciousness (I have have always been that way, in terms of comparing myself to others, but had much more confidence in my physical appearance before my accident. My entire self image has declined drastically, since my accident. So much of my body has changed, and is out of my control to maintain, and/or utilize, that it often feels foreign to me.), but more so by the simple fact that it has become difficult and annoying to get around. As I said earlier, most stores are so crowded with stuff I can barely get around, and it bothers me, not being able to pick things up, get close enough to see things, or be able to try clothes on. It's also especially embarrassing if people need to move, or move displays for me to pass through. I feel as though it draws unwanted attention, and further emphasizes me disability.
Eating out was another favorite past-time, that I rarely do anymore. Just the fact that I can't feed myself, is enough to make the experience less enjoyable. It is embarrassing, to have to be fed, like a baby, in front of countless strangers. Not only do I get annoyed, because I can't eat at my own pace, it's equally annoying for whoever is feeding me. Neither person gets to really enjoy their meal. Someone always ends up eating cold food. Plus, there are many foods that aren't designed for a fork & knife, and become very tricky to eat, when someone else is trying to feed you. Foods like, cheese steaks, subs, spaghetti, ice cream cones, candy apples, french fries, popcorn and burgers, are sloppy, awkward and meant to be held, bit, or tossed into your mouth, by the handful. It's not enjoyable, having to cut certain foods that are meant to be bit, and be able to enjoy the mixture of all the layers of flavor. It's awkward eating foods that are dipped, or have heavy sauces, or dressings. Messy foods just draw more attention, and add embarrassment to the situation. Not being able to wipe my mouth, or clean my own face is bothersome. Most restaurants are too crowded to easily maneuver the wheelchairs, and most tables are impossible to get close too, because of height. Having to always sit at the end of a booth, sideways, or protruding out, from the rest of the group, makes me feel more singled out, and self conscious. Having to always direct what I want next, or when I'm thirsty is tedious. I hate having to always drink from a straw, and ask for a sip. For me, paralysis has drained the enjoyment out of the actual "dining" experience. I still enjoy the food, I just hate the "dining." I much rather order to go, and eat in the lower stress environment of my home, in private.
I challenge all of my able bodied readers to experience going out in a wheelchair first hand. Go to the mall and rent one of the chairs, or scooters for a few hours, and see what I mean. Have your significant other push you around, and see things from my perspective. Try to maneuver inside of a department store, and crowded shops, like Claire's, Spencer's or Brookstone. Go out to eat, and let your friends feed you. Even without a wheelchair, you can experience being fed. I don't mean one, or two romantic looking bites either, I mean, a full meal, with a beverage (one person using hands, and the other not). I guarantee, it'll only take one outing to understand what I mean, and realize why certain things are no longer enjoyable, or worth it, to me. It's not just a matter of wanting to be anti-social, or cooped up in my apartment. It's a matter of what is no longer pleasurable, or fulfilling.