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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Losing family to my illnesses

October 11, 2011

Some people with chronic illnesses talk about losing friends due to the illness.  I can see how that might happen.

For me it was different, since my illnesses started at such a young age.  I was a child when the symptoms first started, and by the year following college they were affecting me in much bigger ways.  I didn’t lose any friends because I had the illnesses before I met them.  On the other hand, I’m certain that I’ve missed out on starting friendships and romantic relationships because of the illnesses.  I put up walls to avoid getting hurt, and ironically that probably ends up hurting me more.  Yes, have been people in my life who didn’t want to be around someone with health problems, but my guess is that I mostly pushed people way.

There’s one exception: a sibling.  She knew me before the health problems started.  Somehow, though, she’s less sympathetic than my friends.  She’s the only one who has ever questioned my truthfulness about symptoms.  She was once with me during a flare and was horrified by it.  For a while after that she was very understanding.  Then when she didn’t see any severe symptoms for a while (because I always try to hide them, even from family) she began to doubt me again.  I know that there has been some jealousy, but aside from that, I don’t understand why she isn’t supportive.  That isn’t to say that she hasn’t been supportive in the past; there have been times over the years when she has helped me out.  This time, she’s noticeably absent.

It’s been hard, but I finally decided to take a medical leave of absence from my job.  I told my parents in person, but emailed the rest of my family and some friends.  I couldn’t handle having the conversation over and over.  In the email, I asked people to respond by email instead of calling, since I needed some time to get a handle on things.  I got the most amazing, supportive emails.  Some made me laugh, one made me cry, all made me feel loved.  I have the best family and friends.  Sadly, almost as loud as the support was the silence from several people.  I don’t know if they are clueless or don’t care or something else.  I know they read the email.  And among them is this sibling.  She never responded.  How could she not respond?

Now, we’re not close.  Actually, we don’t get along all that well.  But whenever either of us has needed something, the other has been there for her.  I’m not asking her to do anything for me.  I’m not expecting any actions.  But I’m shocked that she didn’t even respond to my email.  How could someone be so callous towards their own family member?

There have been a few times over the years where we didn’t talk to each other.  We always knew we’d work out our problems eventually.  I always assumed that sooner or later we’d figure out a way to get along.  But this is unforgivable.  Maybe if this was the first incident I’d let it go, but I just can’t do it again.  She’s appeared to have resentment of my health issues for years and I’m just not going to put up with it anymore.  Life is too short, and I need to focus on my own problems, not on her problems with me.  I’m so thankful for the many supportive family members who have been unbelievable this week.  I’m so thankful for the many friends who are saying and doing all the right things.  If only my sister could do that.

 

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