Monday, August 21, 2006


I don't like change. It's not that I'm not flexible - I can be flexible and easy going a lot of the time - but there are some areas and circumstances when I seem to have trouble handling things being different than usual. I guess I'm a creature of habit, but it's more than that; it goes deeper than stubbornness. It's difficult to explain but I'll do my best.

I suspect that maybe some of my difficulty with change stems from a difficult move from Tennessee to Massachusetts when I was three. I hid in the closet while the moving men were packing up, but no one is sure if it was because I didn't want ot move or if I was just scared of the moving men. I screamed and cried in the car the whole ride up to Massachusetts with my aunt and uncle who never let me forget it. And just in general I obviously didn't want to move. But that's not what I blame for my resistance to change.

More than any life-changing moves from one state to another is the life-changing experience of being chronically ill, not being able to predict from one day, or even one moment to the next if I will have pain or be able to remain upright. In this area there are constnats - pain, fatigue, nausea, the inability to do "normal" things any other 24-year-old would be concentrating on. But in with these consants are the unpredicitibilities that accompany this life - wondering how a new treatment will affect me, if the pain will be worse or better tomorrow, if things will ever get better or if this is how my life will always be or, worse, if things will deteriorate further leaving me with even more problems.

There can be no planning for the future other than dreams which I cling to as if they were a security blanket. But this security blanket brings with it little real security, just the knowledge that my dreams are my own and no illness can take them away from me if I choose to hold on to them. Some dreams are now impossibilities. Some dreams are not impossibilities. Some are merely unlikely to become realities. And yet others, the new dreams, or old ones changed through the course of illness, can still come true with slow, hard work or a miracle. But that doesn't stop me from dreaming. This wasn't supposed to be about dreams.

When things are so unpredictible from chronic illness, there needs to be some kind of stability. Some constants other than those the illness brings. So being resistant to change becomes a way of staying sane in the midst of insanity and chaos. It's a way of creating a sense of safety when things could change in an instant an dleave you sicker...or worse. I'm not being overly dramatic, I'm being truthful.

So I cling to traditions that I can count on to be the same year in and year out. I get upset when peoiple leave, when places change, when my constants aren't things I can always count on being there. Who knows, maybe this is just how I am, maybe being moved at a young age created this in me, or maybe I can blame it all on being sick for so long. Whatever the reason, I'll cling to my safety nets and hope I don't get swept under by the waves of change.


Thursday, August 17, 2006

Missing Boston

I miss Boston, a surprising realization I made while immersed in a crowd of strangers on the T (that’s the subway for those who don’t know Boston). Even more surprising are the things I miss about Boston. I miss getting lost in a crowd on the busy downtown streets. I miss taking the T around (yes, it’s quite odd to actually miss public transportation – I must be weird or something). I miss hearing music drift through the open T doors while stopped at Park Street or South Station. I miss the hustle and bustle, and yes, even the sounds of traffic.

I walked from South Station down Summer Street and Winter Street eventually ending up at Boston Common, a wonderful bit of nature where, on a nice sunny warm day like today, many people can be found lounging on the grass, eating lunch on the park benches, or merely sitting and enjoying the nice weather and beautiful surroundings. Sure, it’s not the most beautiful place I’ve ever been. In fact it probably wouldn’t even make my list of top 10 most beautiful places, but there’s something about it. Maybe the liveliness of having so many people here. Maybe the coming together of the city and a touch of nature that is vacant in so many other areas of the city. I don’t’ know what it is, it just draws me in.

And while walking down Summer Street to get here, I stopped and got a slurpee (the 7-11 here had a different Crystal Light flavor – raspberry lemonade, a bit on the sweet side but a nice change from my usual tart passionfruit). I then came across a woman with a beautiful voice singing karaoke to accompaniment CDs. I stood and listened for a while. Things like that just can’t be found in rural, or even suburban, towns. And I miss it.

Okay, perhaps I don’t entirely miss the flocks of pigeons flying back and forth across the park, flapping only inches from my head. But I don’t really mind them. Perhaps I need to strive towards frequent visits to this part of Boston, not too far from school but far enough to prevent me from having a quick trip over here. I need to come to the commons, to the Aquarium to visit the penguins, to Faneuil Hall, to all those places in Boston I feel a yearning for. And perhaps I need to rethink my notion that I don’t like living in the city...


Tuesday, August 01, 2006


I'm feeling disconnected from the world. I mean, more so than usual. Usually I spend my time how I want to when I'm not working in the office of the Art Center or teaching theater class or at art camp. I rest, watch TV, spend time visiting my friends online, run errands, all that kind of stuff that make up a lot of my life. And I feel connected then. I'm in my house with my family, I can hop in my car and go out to the store if I need something or just want to get away, I'm able to watch TV or DVDs when I want to, and more than anything I'm able to just be me - not another version of me, just me. I've discovered that while I may enjoy working with kids and babysitting isn't a bad way to make some money, I'm definitely not cut out for long term babysitting. I have been housesitting and babysitting for the M's since Thursday afternoon (approaching a week). The kids are 10 (Anne) and 13 (Rady) and while they're not really a handfull the way younger kids would be, they wear me out A LOT and just the fact that I can't just spend the afternoon in bed is exhausting. I feel like I'm living a life that isn't mine, which I guess I kind of am. I'm the surrogate mother for the week (until Sunday) while their real parents are in Europe with a group of friends (the trip was paid for by a friend - the M's aren't really rich). I have to wake up at a certain time every morning to give Rady his meds (he has ADD or ADHD) and keep waking him up to get in out of bed and dressed at a reasonable time. I have to attempt to get him to do something other than playing video games or watching TV (which is more or less a losing battle), and I have to spend even my free time being awake and upright and my role as the "responsible adult in charge" is exhausting.

But back to the disconnected feeling. This isn't my life. And I'm glad this isn't my life, I actually like my life pretty well. I like my house. I love my family. And I miss all that even though I'm only about 10 minutes away from home, if that. But regardless of all that, I feel like the world is out there, my "normal" life is out there, and I'm stuck here in the house taking care of these two kids who are fun to hang out with sometimes but, as most kids would, have a tendency to get on my nerves after a while (Rady more so than Anne). I mean, I know they're just kids and keep trying to remind myself of that, but when they (and my they I pretty much mean "he") doesn't listen to me (or worse pretends to listen to me but then doesn't do what I ask him) and I feel just about ready to rip my hair out, I just want to run screaming from the house and retreat back to my regular life. I guess in a way I'm spoiled because I have somewhat minimal responsibilities and for the most part I can do my own thing, even if it consists of resting in bed most of the time.

Their parents come back on Sunday afternoon/evening and I will be overjoyed to go back to my normal life. Crawl into my bed where kids won't lounge around and watch TV (yes, they seem to forget easily that I'm the one living in their parents' room this week and they need to be respectful of that - my pillow is in the washing machine as I type this because I came back from art camp to find it wet, and of course Rady has no idea how that happened). Pop in a DVD, turn on my air conditioner (yeah, did I mention that this house, while it stays pretty cool, isn't air conditioned?), and spend a few weeks recovering from this week of living someone else's life. I'll reconnect with the world and with myself. My time will be my own and I won't have to worry about making sure the kids brush their teeth or take showers or the dog gets walked (did I mention there's a big dog, too? I'm definitely not a dog person!) or everything else is taken care of. I want my life, with all of the bad and good stuff it entails. Because my life is my own and I want to be myself again.