Saturday, May 12, 2012

I did survive

Claren meets a polar bear.
I dislike it when people I do not know call me an inspiration. I could be an axe murderer. It seems they think because  I live with a disability rather than off myself, I am heroic.

No one called me inspiring this past week on my first work trip, which was good because no one knew me that well. (Except my niece. She was probably inspired in the brief periods of time she was awake. HEE! I kid. She was a great helper.)

But I inspired myself. Here is some of what I dealt with:

To go on a trip when you are disabled makes me feel like one of those stereotypical women you see in movies who pack 50 suitcases for a long weekend. For four days, I filled a minivan. Power chair, shower chair, a bag of clothes, a bag with Claren's food, her bed, a bag with clorox and urinal, a bag for charger and computer, a bag with a poncho.

We got checked in OK and went to dinner. The cafeteria is on the second floor of a building and the one elevator was out. A kind woman took us all around Robin Hood's barn to get us to an entrance to the building on the cafeteria level. We had not even gotten our food before someone came and told us the elevator was fixed.

It was not an issue at that first dinner because the cafeteria was not crowded, but finding someone I knew to sit with did become an issue as the week went on more and more people came. A seated individual like me can't scope out where to sit.  Fortunately one of my bosses had brought her daughter who is too young to speak but would wave vigorously when she saw me. Also, sometimes I just sat alone with my niece -- it is not like I could hear much in a crowded cafeteria anyway. And actually, people usually joined us.

I almost died during my first shower  because I turned on the water, expecting it to come out the handheld, but instead it shot out the main showerhead. And it was cold. I bent over at the waist and could not sit up to turn the water to hot -- it was too cold. I was too embarrassed to call my niece for help so I sucked it up and sat up.

All the outer doors had automatic doors but none of the inner doors did. And some of the bathroom doors were tight fits. That was frustrating. More than once women held the door as I escaped a men's room.

More inspiring for me: The kindness of the people there, whether it was holding doors or busing my tray or filling me in when the captions weren't working.

The first day, the phones were down so our live caption plan got thrown for a loop. Eventually, they got a cell phone to work and that was how the captioner got the speech to caption. It was so-so. By Thursday, we had the right phones set up and it was better. Live captioning is not perfect -- it is hard to follow talks when just a few words get dropped. It is also tiring to read speeches all day.

So tiring that while I did go to the lounge after dinner several nights, I just stayed until it was too loud for me to hear. Then I went to my room, showered, got my niece to help me pull up my shorts and get me into bed, then fell asleep. Annoyingly, we found out that to open the pull-out couch where my niece slept you had to move the wheelchair away from the bed. Good thing we did not need to leave the room in a hurry.

Not hearing is really bad. It keeps me quiet because I don't want to just repeat things someone else said or say something off topic. But sometimes just sitting there feels even sillier.

But I survived, as I knew I would.


Anonymous said...

I am so glad you survived. As I knew you would.

Patrick said...

I would like to hit the Like button for survival. And polar bears.

Matt Trott said...

I had no idea polar bears had such big claws!

Anonymous said...

be very proud of yourself. Traveling with a disability stinks. You just have to make the best of it. But you are doing so well with your job after such a short time. love the picture. Maybe we should do a contest like the New Yorker for the perfect caption for that photo.

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