Living on the frontlines

I’m tired – so tired! It’s almost midnight. I went to church tonight, got home and had 27 e-mails and seven voice mails just since leaving work. Groan – I’ve got a long list of things that need to be done both for work and for HPS, and then these little things come up that need immediate attention and I’m always struggling to keep up. In addition to Hermansky-Pudlak Syndrome, I have sleep apnea, but I’m terrible about using my C-PAP machine. Not only is it hard to sleep with air blowing in your face and making your throat sore, but the mask rubs against my skin, and thanks to the HPS, makes bruises and sores on my face if I use it all the time. Right now I’ve two sores on my face, and I feel like I’m walking around with a two-by-four sticking out of my cheek. They’re sooo attractive! But, because I’d been feeling so tired I thought perhaps I’d try being good about the C-PAP a few nights to see if it helped. To be honest, it didn’t.

Forget fire and brimstone. I’m convinced hell is a place filled with bottles of foaming bubble bathroom cleaner, bleach, mops and sponges. The place must be stacked wall to wall with Mr. Clean and Pinesol. There’s nothing I hate more than house work. My apartment isn’t that big – 800 square feet according to the lease – and there was a time when I could wake up on a Saturday morning, suck it up, and go on a cleaning blitz. I could get pretty much everything finished in a few hours, and then feel free to do whatever I pleased the rest of the weekend. Nowadays, however, it seems to take forever to clean and my house is seldom spotless all at once. It’s like having an exam one needs to study for hanging over your head, all the time. In the last year the smell of cleaning products and kicked up dust has started to irritate my breathing. Within a half hour I’m huffing and puffing as though I’ve just been to the gym doing a serious workout. The fact that I can get so easily distracted doesn’...

It seems as though I should start this blog with some sort of beginning, but what’s the beginning? In college I had a column in the newspaper. It was the most fun I’ve ever had writing anything. I simply wrote about whatever was bugging me that week – and there was never a shortage of material. My picture ran with the column, and being a kind of Amazon blonde woman with a long white cane – I tended to be memorable. People would sit next to me on the bus, or in the student union, and talk to me as if they knew me. Having difficulty recognizing people I don’t know very, very well, I’d play along for fear it was someone who would be offended that I didn’t recognize them. Often it was well into the conversation before I realized I was off the hook – I didn’t know them at all. They just happened to read my column. The greatest compliment I ever had as a writer was one night when I overheard two drunk girls arguing about a column I’d written about Hillary Clinton at a bar at 1:00 a.m. I cons...