Hitchens meets Brain Fog

"The worst days," he says, "are when you feel foggy in the head – chemo-brain they call it. It's awful because you feel boring. As well as bored. And stupid. And resigned. You don't have any motive, which is bad. You don't care what's going to happen to you. That lasts sometimes two days. And when that comes with nausea – even if you have eaten, you have to go and be sick – it's very upsetting."

http://www.guardian.co.uk/books/2010/nov/14/christopher-hitchens-cancer-interview

I don't care when celebrities get engaged, or divorced, or arrested, but when they get sick I find myself wanting to know every last detail.

"Brain Fog", for the first few years, was my main symptom and the hardest to define. When I try and explain it to people I always get the feeling they don't really believe me. Not because they think I'm a liar, but it's just hard to describe, and it's hard to fathom. Next time I will just say, "Christopher Hitchens put it best..." and rattle off this quote. Not that this is really "the best" description, but it's all in the name dropping. The idea being, if it can happen to him it can happen to anyone.

Cher

I'm here to confess, it took some restraint not to reply to Patton Oswalt asking for the number. It's not that I actually believe I could benefit from that kind of thing, but I strongly feel that going to Cher's spiritual healer would be a invaluable experience in my personal CFS journey.

Of course, I have to ask, how is Cher doing? Does anyone know? I haven't been able to find out much information, beyond the fact that she may or may not have CFS. And, as I also #lovelivinginHollywood, my pilates teacher offered to hook me up with Cher's acupuncturist. But I haven't gone because I don't know how Cher is doing. Does anyone know? Seriously.

Laura Hillenbrand

I can't remember now where I first saw Laura Hillenbrand had a new book out. Maybe a banner ad on amazon.com, or one of the many bookish websites I frequent. I don't know the exact date either, but I know it was shortly after I had decided to try NaNoWriMo aka Crazy Write a 50,000 word Novel in a Month, Month.

I'd tried it before and failed. I didn't want to spend four hours every day writing about being sick, but on the other hand I couldn't conceive of a character and a life that didn't involve CFS. So I wrote 600 words and gave up. This time, I thought, I would take a different approach, I would write about a real person: spend half the time reading/researching and then turn it into writing. My inspiration for this idea was Laura Hillenbrand, author of Seabiscuit, whose own CFS story I've always kept a link to on my blog. One line kept coming back to me, "I hung Red's picture above my desk and began to write."

So that was my plan for the month. I printed out some pictures of virtuoso thereminist Clara Rockmore and have been writing every day since. I don't care that before she died she sold her life right's to Sony, or that there's a real writer and musician out there working on her biography and planning to publish it next year. I just wanted something to write about to see if I could still write. Because even though I love Laura Hillenbrand's story, I can only partially identify with it. Like this quote from the USA today article about her and her new book:

She went from being a college student suffering from apparent food poisoning to dropping out three weeks later. She visited doctor after doctor who assumed her symptoms — profound exhaustion, weight loss — meant she was depressed or anorexic until an expert at Johns Hopkins diagnosed her with CFS.

For me it didn't happen exactly the same way but I also had to drop out of college my sophomore year. I was labeled depressed and anorexic until I was finally diagnosed with CFS. But the difference between us, I thought, was that she could still write. Sure, the part of her brain that kept her balance was shot out, but the part for writing was still fine. The writing area of my brain was shot. Gone. She went to Kenyon college in Ohio, I grew up in Ohio and thought about applying to Kenyon college because it was a college for writers, and I'd wanted to be a writer, until my senior year, when I suddenly and mysteriously couldn't write anymore. Or do math. Or go out much.

These past two weeks have been good for me. Every day I write it's like I'm climbing out of a hole. I'm just one day behind schedule. (From the day before I got my period, always a lost day...) Reading the USA today article though, profiling Laura, relating her suffering from CFS to the suffering of her subject in Japanese POW camps, it pulls me back down, somewhere. It makes me relive my own story, and it's hard for me to take.

I wish I could express exactly why I like Laura Hillenbrand so much. I haven't read her book, though I'm planning to. I just...I admire how she talks about her illness in interviews. I love how she knows what to say and what not to say. In a WSJ interview she talks about how Seabiscuit is about accomplishment and Unbroken is about survival, both in the face of tremendous suffering. And that's all she says. I don't know. She tells the truth. "'This is going to be hard,' she says. 'I'm very afraid. I'm not functioning well. I'm going to have to be careful that I don't slip back to the bottom.' " She doesn't take leaps of faith or make projections. She's not an inspirational speaker, like her latest subject. She's a novelist. And a really good one.

The Wall Street Journal article opens with a description of the now 93 year old hero of her new book, and how he doesn't let old age get him down and still trims trees with a chainsaw every day or something. "I have a cheerful countenance at all times," he says. "When you have a good attitude your immune system is fortified."

Blah, Blah, Blah...Fuck you, war hero! So that means it's my own fault I'm sick because I wasn't cheerful enough?

See, that's what I thought when I read that. But best selling novelist Laura Hillenbrand would never think that, right? And if she did she wouldn't write it.

I took a year off after high school before I went to college, hoping I'd figure things out, overcome my mysterious depression, and my mysterious writer's block. I read a book about procrastination with a clever title, "The War of Art." I can't quote from it directly because it's at my old bedroom in my parents house, it's not a book I want with me. But there's one part where the author, historical fiction writer, Steven Pressfield talks about people who get cancer and, faced with death, quit their jobs and move to New Mexico to live their dream of being a painter. "And what happens? The cancer goes away."

I was 18 when I read this. Young and impressionable. Now when I read something like this I just ignore it. But then it sounded like a secret magical key to life. And it stuck with me and I keep having to stomp it down. Yes, an illness can cause you to reevaluate your life and inspire you to do what you really want to do. But that's not going to save you from it. It didn't save Laura Hillenbrand.

I'm cynical. I'm in my 20s. And, I have a greatly debilitating, highly misunderstood disease. And yet, what did I want to write about? Clara Rockmore. I saw her in the documentary Theremin: An Electronic Odyssey. I can't say for certain now but I think it gave a fairly one dimensional picture of her. She was a virtuoso thereminist and Theremin was in love with her. End of story. But then I looked her up on wikipedia and, it said she had been a classical violinist and had only taken up theremin when arthritic arm pain from a childhood of malnutrition ended her violin career. Then I got interested. What's that? Overcoming physical limitations and succeeding? Yes...tell me more of that story...

I was as interested in reading the comments section of the USA Today article as I was the article itself. Whenever there's an article about CFS that merges with the mainstream, there's always comments from PWCs who want to use the opportunity to really make clear how much we suffer:

Sharbear wrote:3d 6h ago

Living with that disease is hell. I wish her only the best.

And then there's the ones you hope for, the kind souls who see the light:

Ripleybird wrote:3d 7h ago

I knew she suffered from CFS but had no idea of the degree to which she suffers. I wish her the best and am keeping my fingers crossed for more stories.

And then there's this one:

hoosierbo47 wrote:3d 12h ago

The central theme of existentialism: to live is to suffer; to survive is to find meaning in the suffering. Both Hillenbrand and Zamperini have found their meaning in their lives. Two courageous individuals, for sure.

Up Early

I had to get up at 8:45 today to take my car to the dealer to have the fluids checked. I woke up before my alarm went off and stayed awake in bed until it did. I guess daylight savings is having an effect on me.

I don't remember when I got to sleep last night, but it was at least by one, probably earlier. So that's at least 7 and a half hours of sleep. Not as much as I'm used to but it's not so bad that I should feel this tired.

I almost fell asleep twice today, once waiting for the maid, and then I had to be awake while she was here, and once while waiting for the dealer to call saying I could come get my car. (Or call a friend and have them take me to my car.)

I just fell over onto the couch and didn't set an alarm because I was expecting the call to wake me up. And at some point I woke up and it was so dark outside and I thought, "It must be 8:00! What happened to my car?" I checked my phone and saw it was only 5:30, still a half hour for them to call. Also saw that I had an e-mail from them saying they'd been trying to reach me for the last half hour. (They had my number one digit off, 2003 instead of 2013...just realized that in two years the last four digits of my phone number will be the same as the year, what a fun year that will be, I'll be 29!)

They said they couldn't finish the car tonight but they could have it for me at 9am tomorrow. (So I wouldn't miss too much work.) But I realized the only thing I had to do tomorrow was go to pilates at 2:00, so I told them please not to call me until after 11. "I have to sleep in"

A little better

I've been better. Maybe it's the cool weather. (Not today though, today is hot, and I'm feeling sluggish)

Proof of my betterness:

11 day road trip (8 days of driving, 3 in Seattle)

3 parties attended for Halloween

7,000 words written for NaNoWriMo

A few months ago I gave up Klonopin, and I can say now that was a mistake. I started back on it slowly to help myself start sleeping again at night and I noticed that on days I took it I always felt better. So now I'm back to taking Klonopin every night and it's great. Sometimes I take two. Last night I didn't take any though because apparently my CVS doesn't stock them anymore. Should be in today though. Maybe if I'd taken one last night I'd be well enough today to go to the pharmacy.

Instead I dreamed crazy dreams all last night. One was a return of the classic I've had since I first started getting really sick, basically, I can barely move. I'm extremely heavy. I have to meet my new college roommate and I can barely crawl across the floor to greet them. This time I was in my yard, gathering giant lemons that had fallen from my neighbors giant lemon tree. Only I find I can only move very slowly and so slow it is not discernible to the naked eye. And while I'm concerned about this inability to move in these dreams, I'm pretty blasé about it. It happens all the time. My main concern is how embarrassing it is. My neighbor walks by and sees me crawling around the grass, "Oh just gathering lemons", I use all my strength to say and sound casual.

I've been pretty much free of these dreams for a long time now so their return scares me a little. I'm afraid it's a sign I'm headed for another bad spell. I have another weird theory. I once read that estrogen is the hormone for inner visuals, so that's why women read more novels than men, they lose themselves more easily in vivid pictures of characters and settings in their head. I don't know. Anyway, Since I decided to do NaNoWriMo and have been trying to write four hours a day, I wonder if I've set something off in my brain and opened the estrogen flood gates and thus opened myself up to more vivid dreams and less restful sleep. It's just a theory...

In saner theories, it's been just about a year now since I started Dr. Cheney's protocol. He told me if I was to feel any different, it would take six months to a year or two years. And this past month, there has been a noticeable difference. Until then I kept getting worse, but now I think I can say, I'm better off than I was a year ago.

I've said NaNoWriMo twice now without explaining what it is. If you've never heard of it, it's this thing where everyone signs up online and pledges to write a 50,000 word novel in a month. To do it you have to average 1,667 words a day. I gave it a try two years ago when I was pretty much house bound, thought that would be the time. It was not. I think I struggled to get 600 words that first day and then I gave up. "NaNoWriMo frenzy" = not for CFS, I concluded.

Do you ever read author interviews about their writing process? They're always so modest. "Oh, there's nothing special about me. I just sit down to write day after day. That's the secret. You have to write every day."

I've been hearing this for years. I know David Sedaris always makes that point in interviews. But David Sedaris also has OCD. Everything he does he probably does everyday, exactly the same. With CFS, you don't do anything everyday. Which is sad news for anyone with CFS who wants to be a writer, or learn anything new, really.

I'm amazed I've been able to write about 1667 words a day. But each time I finish, that's my limit. It's beyond my limit really. If I ever missed a day, I don't think I could catch up. I don't even know if I'm going to make the minimum today. Too bad I can't count the words of this blog. It's fun trying though. Besides being hard on yourself esteem (novels written this fast are guaranteed to suck) it's given me something to do every day, like a job. A sense of daily regularity and responsibility I have not had in almost two years. It's just too bad that if I miss a day, and I will certainly miss more than one, I have no chance of catching up and "winning." Probably. Maybe I will drink lots of coffee the last two nights and write 10,000 words in one go. I haven't had coffee in three years so it should work pretty well on me. (I'm using green tea now for my caffeinated writing fuel now.)

Finally, the road trip. My friend and I had been planning it for awhile. We have quite a few trips under our belt. We used to sleep all day and drive all night. Usually turns at the wheel would be 8 or 9 hours. I once, by myself drove 17 hours straight, on no sleep the night before. It was incredibly stupid. I can't believe I did it though.

This time, I told her, I could do maybe two hours at a time max. And I was being optimistic.

As it turned out, she did do most of the driving, but I did more than I thought I could. And I hardly had any back pain at all. My back pain has definitely gotten better. Thank you pilates! All those flexible spine exercises are working.

The second night of the trip was bad though. I felt like I had a 102 fever. I was afraid I was going to get the flu and be stranded in Twin Falls Idaho for a few days with no health food stores. And I'd be stranding my friend too and ruining out trip. That night she carried in all the bags from the car, checked into the hotel. I just had to crawl into bed. I took extra Klonopin and inosine and didn't use the cell-signalling factors, something Dr. Cheney said to do last time I had the flu. I was sure as I was falling asleep I'd wake up feeling worse. But I felt a little better. It was still a bad and achey day, but I got over it quickly.

In Seattle I mostly kept up with my friends. One night I went to bed when they went out, but the next night I stayed out as late as everyone. (I'd also eaten a bowl of tapioca pudding with tons of raw cacao.) And when they went to EMP and the SciFi Museum I sat in a crumpet shop and drank tea. (I'd already been to the museums anyway.)

Overall I'd say the trip was a success. It was the first trip we actually were able to get up early and do most of the driving in the daylight. (Most of the time) So we could actually see the scenery and not just wonder about it as we drove through the dark.

So in conclusion:

Klonopin rules

I'm going to write a bad novel

I went on a road trip! Despite impossible odds.

The funny thing is I don't exactly feel good boasting about my road trip success. CFS has made me think of energy as a gift and a mystery. It's not something you have control over, it's not something to boast about. Not that I've been boasting, but I have been celebrating. But have I really had more energy, or am I just pushing myself? Which is not an admirable thing despite what the rest of the world may think, people who don't know about CFS. I can't be proud for pushing myself, and I can't be proud for doing nothing. I try to be proud for doing nothing, but, so far it's not working out.