Little things are really big

October 15, 2011

I came across this article in the newspaper this morning, about a local grocery store that is the second in the country to add Braille labels to its shelves.  I never noticed the lack of Braille before, but as soon as I saw the headline, I wondered why it’s taken so long to happen.

Braille labels probably seems like a small thing to many people, but for those who need it, it will make a big difference.  But then, that’s true of so many things, isn’t it?  Audible walk signals at intersections, smooth curb cuts, railings on staircases, ramps…. people who don’t need them just pass right by, but for so many others they make life not only easier, but manageable.  It makes me wonder what else we could, and should, be doing.  Did you notice that the Braille grocery store labels came about because of a first grader?  It’s that young perspective that we all need to have, to question everything, to propose solutions.  Maybe we need to get a group of children together to fix the inequities.  Either way, we definitely should not settle for the status quo.  We need to continue to change things for the better.  There’s always room for improvement, so let’s find the most inefficient areas and improve them.

I’m as guilty as anyone of sitting back and letting others do the work.  I contribute in small ways, but I haven’t stepped up in a big way, at least not lately.  I think it’s time for me.  What about you?

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Why slow beats busy

October 14, 2011

I’ve always tried to be someone who stops to smell the roses, both literally and figuratively.  Maybe that’s why this caught my eye.

As part of my effort to find balance in my life, I just read The 4-House Workweek.  Near the end, I came across a poem called Slow Dance.  I think it’s worth taking a quick minute to read this.  Interpret it as you will.  For me, it was a reminder to appreciate what I’ve got now, since I can’t know what’s around the corner.  It was a reminder not to get caught up in life’s errands and chores at the expense of the important things.

In this American, middle class society, for many people it is a point of pride to be as busy as possible.  But when you’re running around being “busy,” what are you missing out on?  I’d rather slow down and appreciate life.  I’m not saying that it’s easy, but isn’t it worth it?

I think there are very few positives to my health situation.  One of the few is an understanding that the good things may not last and the bad things could get worse (or better) so just in case, it’s important to not take anything for granted.  What are you taking for granted now?  How can you slow down and appreciate it instead?

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Finicky food “facts”

October 13, 2011

What can’t you eat?  That’s always a fun question.  (By the way, that was sarcasm.)  I love that people care enough to ask, but that doesn’t mean that I know how to answer.  I may be able to each something one day, but not another.  Or I may be able to eat something if it’s paired with the right additional foods (often carbs will help keep my stomach settled) but I can’t eat it otherwise.

Some friends get frustrated with me over this.  They want to work around my food issues, so when they invite me to dinner, they ask what I can and can’t eat.  When I’m vague and suggest that I’ll bring my own food, they think that I’m just trying not to trouble them.  I suppose that’s true in a lot of ways, but it’s also that I just don’t know how to answer.  In the past I’ve tried to give people lists of my
restrictions, but then I’ll forget to mention something, or I’ll be having a bit of a flare, and I won’t be able to eat the lovely meal that they prepared with me in mind.  Then I feel even worse.  I usually just ask them to let me know what they’re planning to prepare, but again, it’s dicey.  They may add an extra ingredient without thinking about it, or they may forget to mention something, and suddenly I can’t
 eat the meal.  Why can I eat brie but not feta?  I have no clue.  Why does Thai food make me sick, while all other Asian foods I’ve tried have been fine (and delicious!)?  No idea.  Why does eating dessert one moment make me sick, but 20 minutes later it’s fine?  I can only guess.

In the end, it’s all a guessing game.  Luckily, I’ve gotten better at guessing over the years.  But try explaining that to a dinner party host.

 

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Contrasting my charmed life vs. my CI life

October 12, 2011

I suppose I’m one of those people who always had it “easy.”  It’s not that I’ve gotten everything I ever wanted, but somehow things have generally worked out in a good way for me.  I didn’t get into every graduate school I applied to, and I was wait-listed at the school I ended up attending.  Then again, I ended up at one of the top 5 programs in the country, so even if I didn’t get in immediately, I did get in.  See?  Somehow, it works out.

Now, that isn’t to say I’m exactly where I want to be in my life.  I figured I’d be married and have kids by now.  I’m not married, and kids are pretty unlikely (between my age and my health, I doubt I’ll have any, even though I still want them.)  Still, I live in a nice (though not luxurious) apartment, I’ve had good jobs, and as I’ve said before, I have fantastic family and friends.  Things have come “easy” to me.  Some were easier than others.  I grew up in a middle class family.  I wore some hand-me-downs and we didn’t take exotic trips, but I never wanted for anything, I didn’t have to get a job during the school year, and my parents paid for college.  Occasionally I got some bad grades in school, but mostly I got As and Bs.  I failed at sports but excelled at many other extracurriculars.  Life always seemed to work itself out in my favor.

This was running through my mind today as I was thinking about why my current work situation is so frustrating.  It hit me then: that other stuff was separate from my health problems, but for the first time, now I really can’t separate the job stuff from the health stuff.  Now, it’s all intertwined.  Now, I have to admit that one affects the other.  So what happened?

The pain started when I was in junior high school, but somehow I was able to manage it.  Maybe that was part of my charmed life?  More likely, it was part of the stubbornness I get from my mother’s side of the family.  I was determined to not let it slow me down, and for the most part, it didn’t.  The fatigue started in college, and that was harder to fight off, but somehow I did it.  Again, the stubbornness really paid off.  I worked hard, finished school, got jobs, had a social life, tried to balance everything.  The illnesses were always there, the frequent doctor appointments and experimental treatments never disappearing, but somehow it all felt more like background noise.

And that’s what changed.  The health issues have moved to the forefront.  I’ve lost my sense of balance.  I can’t no longer ignore or pretend.  This isn’t necessarily permanent, but right now, it’s how my life is.  The ease and charm are hiding in a corner somewhere, and I better hurry up and fix the health problems so I can get them back.  The CIs will never go away, but I want to go back to succeeding in life.  It will happen.  Just give me time.  Afterall, I’m incredibly stubborn.

 

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