This week at the Gimp Compound

It's been busy around here. On Monday I spent time with four new nurses who will be helping me out. It's been hard for the home health care agency to find them and my parents have spent about four sleepless nights per week for the past two months taking care of me because of the shortage in medical professionals required for state funding of assistance to a vent user. (How's that for a confusing run-on sentence?)

Two of these nurses I met a couple weeks ago and they worked actual shifts where we were adjusting to each other and they were still learning the routine. The other two nurses dropped by for the first time ever, and one of them shadowed another nurse around the house for a couple hours to start learning what the job entails. These new people were in my house and watching me or caring for me in every daily situation from 8 a.m. until about midnight, which was mentally exhausting even though they all seem like competent women who will eventually fit right in.

Tuesday I had a doctor's appointment that consisted partly of getting my primary's script for various things I having the nurses do or not do that need to be medically official. This too, is to satisfy all the state departments and supply and insurance companies that insist on being up in my life. This is the price I pay for not being able to afford severe disability myself.

I did also get weighed, which requires some sort of equipment that accommodates a person who cannot stand. (A chair with a scale attached isn't a complicated idea, but most clinics don't have one so I have to visit the ICU and lay on a hospital bed with a scale built in.) Good, good news there, and I'll write on that separately.

Wednesday I went shopping for the first time since I was sick well over a year ago! Long before I went into the hospital I was ill enough to not go anywhere for fun, so this was a big, fun deal. Yeah, I've been to Target a few times since coming home, always after local doctor's appointments. And I have eaten out and browsed a few places during trips to the Twin Cities for parts replacements events. But I haven't gone anywhere just for the fun of it since 2005. So Wednesday was fantastic!

I went with my sister and a nurse I've employed since I came home last March, and I learned something new about myself during the course of the day. Since I first became visibly disabled around about age twelve, I've always been hyper-aware of disability as a public spectacle and performance. That is, I've always known people are curious and watch, and until now I've never shaken the self-consciousness that is part of the invasiveness of physical difference.

Now, apparently, I no longer give a damn. I'm more visibly interesting than ever, of course, with the puffing vent and tubes coming out of my neck, and I still have to manage interactions caused by public curiosity, but I don't feel vulnerable to other people's gaze in the way I always have. I'll probably write more on this as I think it through.

While at a bookstore (!) looking at a table of fiction, I turned and found a man standing right next to me. Caught staring, he was quick: "I was just admiring your chair," he said.

My chair is hardly the most interesting thing about me, as noted above, but I thanked him and edged my scooter forward a bit. From behind me now, he asked some weird technical question that proved he is probably a medical professional of some sort and was likely admiring my small laptop-sized vent, which even the highly-skilled respiratory therapists at my rehab hospital don't normally get to play with in the vent-users wing where they work. It was surely professional curiosity, and he asked something about whether it provided "oxygenation blah-blah-blah."

He was behind me and I simply shook my head and that was the end of it. But I was thinking, "Dude! I'm in a bookstore for the first time in forever! Look! A new print edition of Pride and Prejudice! Gabriel Garcia Marquez has a new book out! Let me fondle and feel the joy!"

Lunch was T.G.I.Friday's because I wanted a massive menu of cheesy or spicy or breaded and bad-for-me foods. Curiosity at the restaurant too. Did I imagine a couple people pondering for the first time how a woman with a hole in her neck at the next table would affect their appetite? I don't think so, but the difference is I didn't care.

Have I mentioned that I've been speaking now for about two months? The quality of my voice varies but I am able to leave the trach cuff loose enough that I have the constant capability and almost never write notes to communicate anymore. Out shopping, talking, eating -- a tremendously big deal.

Meanwhile, the past two nights have been spent with a hesitant new nurse, so I've felt "on the job" even while sleeping, and I'm pretty tired. But it's been a good, busy week.

I completely missed out on the latest Disability Carnival which is up today over at Planet of the Blind. Stephen and Connie have done a fabulous job and I can't wait to visit all the links.


For those who need the description: The photo above is of my portable vent where it is mounted on the front of my scooter, with the control box of my scooter in the foreground since the picture is taken from my point of view. Hanging from the handlebars is an ugly but functional homemade bracelet that holds the wedge for getting the circuit (vent tubes) disconnected from my trach for suctioning or getting dressed. The wedge looks like a large flat white forked-shaped tooth and because my sister and I are nerds and love the movie Dune, we call it "the tooth! the tooth!."