One of the many annoying things about being completely paralyzed, and totally dependent on others is the fact I can't take care of my own things. Not being able to be self sufficient with my personal hygiene and toileting needs are by far, the worst most embarrassing, degrading and invasive aspects of being paralyzed. Not being able to take myself to the bathroom, wash, dress, groom & feed myself are the aspects of being paralyzed I hate most. However, not being able to take care of my things, and maintain my living space is the second worst aspect of not being able to do anything.
Even though I have help from people (aides, nurses, friends & family) and try my best to direct how I would like things done, and where things should go, I'm forever frustrated because no matter what, no one ever manages to do things exactly the way I would like. It boils down to two key problems. First off, there are just too many "hands in the pot." On a daily basis I've got three, to four different people helping me. Even though I try my best to be organized and label everything I possibly can, things routinely get misplaced. Either the person helping me doesn't put the item away (right away), and the item ends up sitting in the wrong spot for days (and then potentially gets moved by someone else- in the effort to straighten up) or it gets put away in the wrong place all together. The second annoying thing that is most frustrating is that most times things are not as clean, or orderly as I'd normlly keep them, if I could care for them myself. The old adage "if you want something done right, do it yourself" most certainly applies to me, for basically everything. However, my paralysis keeps me from being able to do anything besides giving verbal directions and asking for help, and then hope for the best.
I try so hard not to lose my temper, get impatient and to not let "the little things" get to me. In the larger scope of everything I deal with (and am forced to endure), thanks to paralysis, I really can't afford to obsess over material things. Rationally, logically, I understand my stuff is just stuff. At best, my material possessions offer me a small amount of comfort and distraction. They don't really impact, or influence the bigger, more pressing dilemmas, physical limitations and burdens I deal with. I have enough on my mental "plate" at any given moment, that would ordinarily seem completely overwhelming to the average individual. If I let myself get mad or upset, every time I come out of my room to see a dirty kitchen, or my aides can't find something I'm looking for, I would go absolutely mad.
I think what makes living with paralysis especially hard for me, is the type of person I was before my injury. When I was on my feet, living independently I had a classic "A-type" personality. I was what you might call, a "control freak," and definite over achiever. I planned my life down to the nano-second. I put a lot of pressure on myself to succeed in everything I did: as a student, as a teacher, as a daughter, as a friend, as a person. I hid every self perceived flaw and tried to be as close to "perfection" as possible. Being organized, and a planner helped me thrive and even though I often balanced a lot on my plate, I managed well.
I remember when I was in college, my friends and family would tease me, because every semester I created a color coded grid, allotting time for everything: from class, to study time, to work, to sleep, to time with my boyfriend. I kept my time management chart with me at all times (in my school planners) and had several posted (one in my bedroom and one posted at my boyfriend's). I always used green to signify "boyfriend time." My ex was a much more laid back, and a "go with the flow" kind of person, so he was always forever getting frustrated with me. Looking back, it was a bit over the top, but I know it helped to keep me focused and on task. I ended up graduating from college with a 3.9 GPA, and I definitely attribute that to my ability to multi-task and micro manage my life.
Being organized also definitely helped me to be a good teacher. I had my lessons planned out months in advance (so I was never caught off guard, or left scratching my head for things to do). Everything in my classroom had its place and my students were each assigned roles (which I alternated from month to month, based on my seating charts). Even though I had nearly five hundred students, in twenty different classes, I always knew what I was doing with each group, and easily juggled up to eight or nine different projects, during any given week. My classroom ran like clockwork, which helped my students to stay on task and made it easy to maintain control and give directions.
By the time I had started teaching, I had graduated from using my paper college planner (highlighters and tons of post-its) to a hand held electronic organizer (Palm Pilot). My Palm Pilot was my life saver. I relied heavily on it, to balance my time between work, graduate classes, family time, going to the gym, running errands and my social life. My apartment was always spotless. I had a particular way of doing everything: cleaning, laundry, keeping records, paying bills, etc. I had a particular way for folding my clothes. My closet was organized by color, and grouped according to the various types of clothing (strapless shirts, short sleeve shirts, long sleeve shirts, skirts, capris, kakhis, dress pants & jeans). My dvds, and cds were alphabetized (since I owned hundreds). I kept all my receipts, and paperwork neatly filed in filing cabinets. My books shelves were organized by topic. Everything was easy to find.
I tried not to let things pile up, and cleaned up after myself everyday. I enjoyed coming home to a clean living space. I loved the crisp, clean scent of Clorox wipes, Swiffer solution, laundry detergent, Febreeze and Glade Plug-ins. I liked being able to always know where my things were, and to have everything tidy, uniform, and in its place. I always felt more peaceful and relaxed when everything was put away and everything was clutter free and sparkling. I tried to keep my home and classroom clean and organized at all times, so if an uninvited guest, or surprise visitor (like my principal- at work obviously) showed up, I wouldn't feel caught of guard or embarrassed.
My paralysis has taken nearly every ounce of control, and power away from me. The only thing I can do myself (once I get set up) is paint, write, handle my finances, shopping and direct the people helping me. If it weren't for the computer, I would have an even smaller list. Since I can't handle, or put away my own things, I have to rely on my memory, for keeping track of everything. It's critical that my helpers follow through with my directions, so that there is consistancy and I know where everything SHOULD be. Even though my family, friends and aides try their best to follow directions, everyone has his/her own little quirks and their own standard of cleanliness. No one person does things exactly as I would. I've had to learn to bite my tongue many, many times and learn how to be flexible and to go with the flow. Despite the fact that I have vastly expanded my tolerance for patience, there I still some days when I just want to rip my hair out & scream.
There are some things that require demonstration. No matter how great, or poor my vocabulary is (in English or Spanish) there are just times when I wish I could just SHOW the person helping me what I want, or what I mean. At times it is exasperating having to explain, and re-explain myself. There are many times when I have an aide or nurse helping me, but I end up calling my mother or sister over, because they know what to do, or how to do it. It's much quicker (and less frustrating) to have someone who knows what I want to teach, or demonstrate to my aide how to do what I want. It saves me a lot of time and aggravation.
The other thing that has been so difficult for me since my accident is having to share my space (and all of my things) with other people. For one, I live in a two bedroom, two bathroom apartment, so there's not a tremendous amount of space. My mom and sister live with me and although they've gotten better over the years, their definition of "clean" and "organized" doesn't usually stand up to my picky expectations. Then you have to consider the fact that I have several aides and nurses, which also touch, clean and put away my things. It only takes one person to misplace something, and I'm stuck playing detective, hunting through the entire apartment. Plus, almost all the furniture and stuff (in general) in the apartment is mine. I expect the common areas which we share, like the living room and kitchen to be clean. It irks me when they're not because I feel embarrassed by a messy home (which my aides, nurses & visitors see) and it also ticks me off when I feel as though my things aren't being cared for properly. Although I'm not miserly or greedy, I do take pride in the things I buy and own. I think it's unfair (and frustrating) when I see my things being misused, or neglected.
Certain things that bother me, like crumbs on the counter, half empty cups, food wrappers, shoes and articles of clothing lying around, don't seem bother my mom & sister. It's little, in the scheme of things, but it's hard not to get annoyed or angry. I hardly ever see their room or bathroom, but do occasionally ask my aides and nurses about their conditions. I feel it's my responsibility (but get annoyed because they are adults & feel I shouldn't need to check up after them- or nag them) because it's my apartment. They might not be embarrassed by ring stains in the toilet, or toothpaste in the sink, but I am. In my house growing up (with my dad & stepdad) laziness, and sloppiness weren't tolerated. I used to groan & complain as a kid, but now I understand it's because they worked hard for what we had and wanted my brother and I to respect that fact, and help them maintain things.
I was taught (at home & at school) that people judge you by your appearance. If you dress sloppy and keep a messy home, people are bound to think less of you. First impressions matter (in matters of building personal and professional relationships and in getting a job), how you speak, carry yourself and maintain your home all reflect on the type of person you are. I've always held those lessons close to my heart. I always want to put my best face forward, in every aspect of my life. I try to take pride in myself (although it's challenging given my condition) and my things and want others to take notice of that fact.
It's frustrating having to share my space (although my family is very supportive & comforting in many ways- I'd much prefer to be independent). It's hard having so many other people touch me and my things. I try my best to maintain control over what I can, but know there's only so much I can do. I can't realistically hold my family, aides and nurses to my personal standards, and expect them to be as nit picky as I am. I know that's too much to ask, and every time I try, I only end up getting more frustrated, dissolutioned and agitated. My accident made me go from being a control freak, to having absolutely no control whatsoever overnight. It hasn't been an easy transition, learning to compromise, lower my expectations and having to just "let go" of certain things.
If anything, the biggest lesson my accident has taught me, is that control is just an illusion. We all think we have control over our lives, but in reality all the best plans in the world can be shattered in an instant. Control is a coping mechanism we each use, to give our lives order and purpose. Unfortunately, anyone can lose control (over everything) easier, and more quickly than most people care to acknowledge or realize. Even after everything I've been through, and as helpless as I am, I'm still guilty of trying to be "in control" of what little I can. I know at times it might be futile, or even possibly end up blowing up in my face (when things don't turn out the way I "planned"- nothing rarely ever does), but it's ingrained in my nature and a hard habit to break.
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