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It’s noon, and I just woke up.

May 27, 2012
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Jack and I had made plans to go up the stairs at the same time, so I waited for him. Unfortunately, there was a “Star Wars” marathon on Spike TV, and he didn’t detach from that until 2 AM. By then, I was past sleepy, and deep into narcolepsy. I couldn’t even walk across the room without help, much less climb the stairs. So I spent the night on the couch.

Ten hours of sleep always helps my brain and my pain, but it also puts tremendous pressure on me because  I have so much to do. Why, oh why, can’t I get on a schedule and live like normal people do? From the conversations and comments on the Alliance group, almost no one has a regular sleeping schedule. The pain is greater at night, and often the pills don’t override it. I have a clutch of pills that I take between 11:30 and midnight. They act like a Micky Finn slipped into a sailor’s beer at a portside bar … not too long after swallowing them, I can hit the floor. But although I can control my time of falling asleep (generally), I cannot control how much sleep I will need. Can I arise at 8 AM? At 9? If it’s been a stressful few days, and lately they all are,

It is even more important now that I get some handle on when I am awake, and when I am asleep. I’m too busy with all the things that I want to do to form the Central Pain Syndrome Foundation – and there is the rest of very messy life to handle. Why haven’t I posted for so long? After the video, I immediately began the start-up of what is going to be the 501(c)3 for Central Pain Syndrome. Mary and I raised a committee out of our suffering CPS Alliance members, and we’ve had several meetings attempting to get things going. It’s a lot harder to create a non-profit when you have little idea of what’s involved. I worked quite hard with the Greater Brunswick Charter School before it opened, and during its first five years. But I wasn’t there at the beginning. When I was President of the Board of Trustees, the Board had already been constituted and running for three years. The by-laws and the Charter had been written, and the structure of the school was intact.

The CPSF is at a very different space, because it doesn’t really exist in a formal way yet. We need to incorporate and then file for non-profit status with the Federal Government. It takes a good deal of work – and money – to get these things accomplished. The seven or eight of us who are well enough to participate in meetings and actually do the work involved have met in conference calls a few times. Now we are moving to Skype, because it allows for video conferencing and, more importantly, is a lot cheaper. Most of my “brain engaged” time has been spent working on that, rather than writing here.

But there is also the absolutely pernicious effect of email and the general Internet. I spent a week pruning email senders, cutting out advertisements, political pundits, non-profit fundraisers, and general “information purveyors.” At least one hundred got the “Yes, I really want to stop getting mail from you” selection checked off, once it could be located. (The “unsubscribe” option is one every email, but often disguised so you can’t find it. For example: imagine the word “unsubscribe” in the smallest font possible, down at the bottom of the mail, printed in a shade of grey just one tone above white.So even after shedding more than a hundred of these burrs that you pick up as you walk through the Internet woods, I still receive over 150 of these a day. My problem is that I read the email tile. With my Adult Onset ADD, that’s enough to distract me. Once I start clicking to follow through to the story, I am a lost soul. Down into the tar pits I go, making comments on political websites, collecting recipes, listening to music on YouTube, and printing out articles that seem particularly apropos. By the end of the day, when I am sleepiest, this jumble of ephemera and current events has stewed into a witches’ brew in my skull. I had a deeply scary moment of fear last night when I began  to imagine where our country might be this time next year, and how we would even see a civil war taking place in the country.

But those fears and those distractions are all preventing me from completing the primary directives: get the CPSF off the ground. Improve my health. Majorly improve our finances. Keep the house, declutter it, and finally complete fixing it up. O know that there are greater forces at work in this nation, some of whom have been planning and working for their own ends ever since the Powell Memo in 1971. I can’t stop them and I never could. I may be terrified about getting to a political state where neighbors betray neighbors, but that’s not something i can handle alone. Being fearful, being distracted, searching for fun or diversions – these are all luxuries that I can’t really afford anymore.

Certainly not in I’m going to sleep 8 or 9 hours a day.

Last week, the three of us went to a party at my friend Jim’s house. They have a severely autistic 15 year old  son, and their entire lives are built around caring for his needs. (His needs seem to be food and constant motion.) What I admire most about them is their constant diligence and care, as if they have emptied themselves of all personal desires in order to take care of their business, both of them being college professors, and their only child. Kristina is remarkable: a constantly cheerful dynamo, who is either teaching Classic, translating Roman poets, driving Charlie to his favorite places, going for a run with him even at two in the morning, or writing. She has kepi a blog about life with Charlie for at least five years, writing daily entries. She also writes opinion pieces on Care2.org. I asked her last week how she does it. Her reply? “I don’t know – I just do. I’ve always been very disciplined, ever since I was a little girl.” She also admits that she sits down and writes a blog entry every day, whether she has something important to say or not.

Well, it may not be important to say that CPS patients need a lot of sleep, because being in pain is exhausting. I think that it’s an important clinical data point to recognize that CPS patients are always much better, in terms of pain and mental clarity, upon awakening. This “good” period lasts 4 hours to 6 hours or so. What I have to accomplish in those hours, however, sometimes overwhelms me But I will put “writing a blog entry” on my morning to-do list.

That way, I can keep a record of the CPSF as its is instituted.

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