Copyright © Illustration by Hadley Hooper

Copyright © Illustration by Hadley Hooper
Copyright © Illustration by Hadley Hooper

Wednesday, May 8, 2013

Having life dictated by your sleep schedule is NOT a luxury.

Despite what the other people at work may think.

I come into work at 9:00 am. Not because I want to, but because I have to. The people at work think it's a luxury though, and I get such snide comments as "It must be nice to be able to waltz in at 9 am." But what they haven't seen is the consequences of what happens when I don't. Until today, I hadn't either.

Yesterday I had to be at work at 7:30 am to attend a class. I figured that as long as I could go to bed early enough, I'd be okay. But when I woke up at 6:00 am and could barely think straight, I knew it was a bad idea.

I was in a mental fog all morning, which was great for my information retention. (I'm using italics for my sarcasm font.) But the worst part was today, when I felt the fatigue hit me, like a rainstorm that soaked me through to the bone. By the time 3:00 pm hit, I couldn't stand it any more. I knew that I had burned through all the productivity I had in me. I went home and slept until 6:30 pm.

I'm never waking up early again, whether I want to or not.

Wednesday, May 1, 2013

Creating Jobs For People With Disabilities

At my narcolepsy support group, we discussed what it was that PWN need most that they don't have: alternative employment options. I had a few ideas, but it wasn't until yesterday that I had a real winner.

What if, instead of the traditional labor market where people are hired for hourly increments, there was the option to hire someone to complete a specific task? This would allow under-employed, unemployed, and disabled persons to contribute to society in a way that they currently cannot.

Just think. How many times have you needed help as an individual or company, but not known where to turn for a task that doesn't require hiring someone for the long term? Babysitting, grocery shopping, ordering supplies, even network management and computer programming could be accessible from your fingertips.

If you think this is an idea worth exploring, please sign my petition at: https://petitions.whitehouse.gov/petition/create-task-based-job-pool-allow-disabled-and-underemployed-americans-chance-contribute-economic/gGwKgZpZ

This could be the opportunity PWN have been waiting for to show the world that we are not our disease! The only way to know for sure is to lend your support.