Endless Vacation

I'm supposed to be making a decision right now, aren't I? Something about stem cells?

It really has been on my mind constantly, and at one point I had almost decided: the risk is minimal, the potential benefit is immeasurable, so it isn't a matter of if, but when, and if it's only a matter of when, isn't sooner better than later?

"If not now, when?"

But there's still a part of me that's afraid of the unknown. The unknown being, "Who's cells are these anyway? And does even it matter? Does it? Even a little??" I decided to conquer my fear of the unknown with knowledge. I decided to acquire this knowledge by going to Barnes and Noble and purchasing a copy of Stem Cells for Dummies.*

I've never liked any of the for Dummies books. I don't have a lot of time (energy) to spare so if I'm going to read a book it has to be not only informative but well-written and preferably enjoyable. That has not been my experience with any of the Dummies books. But after googling Google Books and scouring Amazon Listmania I came to the conclusion that this was probably my best bet. There just aren't many books about stem cells out there, at least not in the context I'm looking for. If you want to find a book about embryonic stem cells: ethics, morals, dreams, possibilities, then you have plenty to choose from. But adult stem cells, specifically "cord blood" stem cells, not so much.

I figure I should put some kind of deadline on my decision, like, a month from now, whenever now is. I haven't actually done that yet. June 10th?

So far I have only gotten through the first chapter of Stem Cells for Dummies. That was three days ago. I read it in study mode, pen and highlighter in hand, ready to reread what I didn't understand, to find the most important points.

So far, this is what I've taken to be the most important points:

1. It's funny there's this sudden big fuss! Stem cell research is hardly new!

2. However, we hardly understood anything about how stem cells work at all!

3. All stem cell treatments are highly EXPERIMENTAL and DANGEROUS

4. Beware of "patient testimonials" and "the placebo effect"

I put the book down after the first chapter and haven't returned to it because it made me really sad. It's making me "face reality", and it's depressing.

There's this whole delicate balancing of dichotomy one has to deal with when one is living with chronic illness: on the one hand, life sucks. On the other hand, you have to make the best of it. I worded it broadly like that so that healthy people can relate. The thing is though, I don't think they really can. When you are sick you can never forget the bad part for too long because no matter how long you can go walking around thinking positive and looking on the bright side there will come a day when you are in so much pain you can't get out of bed, you can't think, you can't read, you can't talk, you can't do anything to take your mind off the fact that you are really really sick and may never get better.

You could liken this problem to this article today in The Onion, imagining what it'd be like if the prolific political dissident Noam Chomsky tried to take his mind of things just for one day:

"Sources said Chomsky took what was supposed to be a refreshing drive in the countryside, only to find himself obsessing over the role petroleum plays in the economic and military policies that collude with multinational corporate powers."

"All right, all right," the noted critic and philosopher said, "I'm going back home, writing one—just one—reasoned, scathing essay, and getting it out of my system. But then I'm definitely going back to the park to walk around and just enjoy the nice weather. I'm serious."

"Because there's got to be more to life than the way that wage slavery strips the individual of his or her inherent dignity and personal integrity," Chomsky continued. "Right?"

For a while there I thought I should be miserable all the time. Anger, depression, sadness, they have a purpose - they motivate you to change. But eventually I realized I could be happy and accept my situation without losing the will to keep trying to change it. I've gotten pretty good at fooling myself into thinking my life is not so bad. After all, the world is full of misery, suffering...wage slavery. Why should I be an exception? All and all, life is ok.

But then here I am holding a book that might as well been called Stem Cells for the Desperate. I'm reminded I have a terrible disease and that yes, things are pretty bad. In gleefully thinking ahead to what I would do if I became a "functional cure", wondering which college I would go back to, what I'd major in, I'm forced to remember how sad I was, how much grief I went through, having to give these things up in the first place.

On the night I had the bad insomnia, before I wrote a blog, I wrote a lot of other things including a list of the happiest times of my life. There were no rules for the list except it could only consist of the first things that came to mind. I came up with twelve, paused, thought a little more, and ended up with twenty. Some were single days or events: an awesome road trip, the time in 7th grade I stayed home sick by myself and spent the entire day on the internet. (Sounds totally ordinary and even tedious now but at the time it felt like the biggest, guiltiest most wonderful indulgence of my life.) Most items are longer periods of time: freshman year in high school, freshman year in college, the six months I spent learning guitar, "all of childhood."

When it was done I realized they all fell into two main categories, times I was working really hard and times I was on some kind of "vacation." I also realized that they pretty much stopped after 2004, the last year I was well enough to work a full time job or complete a semester of college. This is what I frantically typed in my hypergraphic state:

Sadly there are no happy times after 2004, except a road trip or two. That’s six years of unhappiness. No offense to the people in my life at this time, it’s not you, it’s the disease. Fleeting moments like awesome concerts (Faint/Fever, Hives, Dandy Warhols, Momus, Divine Comedy, Phillip Glass, Terry Riley), good books (Middlesex, Pride and Prejudice, Strange and Norrell, Outliers...) discovering new favorite bands, listening to good music, the time ____ _____ kissed me on the cheek, don’t make it. Notice those are all passive experiences. They enrich real experiences, but can’t produce real happiness themselves. CFS makes you settle for a life of passive experiences.

Half of these are about working hard, half of them are about play, travel, vacation, relaxing, etc. With CFS you can’t do either. Also notice there is nothing to do with food there, even though I love new food, new restaurants, etc. But I don’t think back to when I used to come home from school and zone out in front of the tv and eat a box of goldfish crackers as a particularly happy time. So even though there’s been some things that you’d think would be on the list...World Cup Trip, Alaska Trip, learning IPA (I almost put that one), they just didn't make it because they occurred after 2004.

Work hard, play hard. I first heard that expression from my Dad my first year in high school. Now I can’t do either. Sleep hard, try hard, see no results...life is hard. Everything in vain. Pain, insomnia, alienation. Denial. Not things that make humans happy. So what have been the happiest times these last five years? I could pick them out, but, they wouldn’t really be happy times, just “happiest” in bad times. I don’t think I’ll ever be happy again unless I can work, learn, and play. All I have now is tiny pieces of these old things. Except the internet, I can spend as much time as I want on the internet, but it’s not a treat anymore, is it?

I came to the conclusion that being unable to work or play, I was living in a kind of purgatory, and the only way I would ever know happiness again was to get healthy enough to work (or go to school) and the only way to do that was with stem cells.

And yet, I'm still not sure. For one thing, there's no guarantee that if I got the transfusion I would be healthy enough to go back to school. There's also no guarantee that even if I feel better enough to go to school for one year, even just part time, that I'd still be healthy the next year. It might wear off. I imagined a life where I was going to school part time in the spring and fall, and instead of spending my summers at internships or abroad, going down to Panama every summer for a reboot, for new DNA, and then spending three months regenerating in my cocoon so I could go back to school in the fall. At that rate, if I didn't do a double major or any extra electives, theoretically I could graduate in six years and it would only cost $60,000 + tuition. Hurray!

I still haven't totally let go though of the myth of stem cells as a magic bullet. Maybe I'd only need one transfusion and I could go back to school full time. Who knows. And if I believe that, then I also have to believe that if I don't rush right out and get them, it means I am afraid of life, that I don't want to go to school, that I don't want to get better.

I know that's nonsense, but, sometimes it's how I think. It's stories like this from Dr. Cheney that make me think this way: The only person who didn't feel any difference from the stem cells was a 56 year old lawyer who was working 60 hour weeks and felt terrible. He wanted to work 60 hour weeks and feel good. (He still had CFS, it's a wide-ranging disease.) When I heard that I did not think, "Whoa, that guy is a workaholic who's being way too risky and using stem cells like they're the fountain of youth." I thought, "Damn, this guy loves life way more than I do."

And then when I found out they were now doing intrathecal transfusions, (transfusions into the spinal column) he said there had been six so far just last week, but there were six people down there now, and when they heard how great the other six felt they all said they wanted intrathecal transfusions too! Who are these people? Don't they know about decision trees???

I can't even think about intrathecal transfusions right now. As I understand it, injections into the bloodstream are pretty safe, your body knows what to do. The brain on the other hand, is stupid. That's why when embryonic stem cells are transplanted in the brain they just multiply and multiply and you get tumors. Is it the same with adult cells? Is it the same when they go into the spinal column? I don't know, and I don't mind waiting a little longer to find out.

I'm always wary of being thought a malingerer. I assume everyone with CFS is. By 2006 I had started and dropped out of three consecutive semesters. However, I had never heard of CFS, I still had no abnormal test results and no other diagnosis than "depression." Also, I wasn't the only kid to ever take a semester off. I knew lots of people who had dropped out mid-semester or planned some time off to goof off or find themselves or whatever it is angsty, young, thoughtful people do. For awhile I thought I was one of them, but by 2006 I had realized there was something really wrong with me even if the doctors couldn't find it yet, that no one else was this tired. It took my friends and family a little longer to come to this realization though. There was one particularly painful instance, when my best friend, who had taken some semesters off herself, but was now pushing through to finish and get her degree, essentially told me that I'd been on vacation long enough, and it was time "to stop fucking around and grow up." Is that what she thought I'd been doing all this time? I told her, rather meekly, that I didn't think of this as "time off", that I thought of it as "sick time." She just rolled her eyes and it was the end of the conversation.

I think it's in Stricken, can't find the exact quote: a teenage boy who gets ME/CFS and is out of school for the whole year. His friends think it must awesome to stay home from school and play video games all the time. "Yeah it's nice, for a month, but not for nine." After nine months, even if he isn't anxious to go back to math class and homework, he at least must be aching to ride his bike around the neighborhood. And then the longer you're sick, the sicker you get...

To anyone who thinks CFS is an endless vacation, I would invite them to think so in the context of the Ramone's song, Endless Vacation. You only need to listen to the first few seconds to get the picture.

*This is not meant to be a review of Stem Cells for Dummies, like I said, I've only read the first chapter and skimmed through the rest. Even though I am disappointed that there just isn't enough of the kind of research I was looking for out there, so far, I actually think this is a really well written and informative book, despite not mentioning Chronic Fatigue Syndrome once in it's 360 pages, like everything else I've read about stem cells.

Insomnia/Hypergraphia

7:33 am.

I got into bed nine hours ago, haven't slept at all.

It's times like this I thank god I'm unemployed. There's been many, many times I've gone to a job or a full day of classes on zero sleep. Sleep deprivation is a terrible experience. There's a buzzing in the head, inaudible, but still a buzzing. The ability to concentrate completely dissolves, and you feel alone and lost in your own head all day. The strangest and probably worst thing is the sensation of feeling dirty and tingly all day, even after showering. I can brush my teeth three times before I leave the house and my mouth still tastes acidic. And my teeth throb like they all have cavities.

It's a great relief to know I don't have an assignment due or a clock to punch. I do however have an acupuncture appointment. There's no way I can go. It's a new doctor so I don't know their cancellation policy, but I have a feeling it's 24 hours. I had one doctor, my regular internist, who was very nice. He never charged me for missed appointments. "It'd be like if I were treating you for headaches, and you said, I can't come in because I had a headache!" I loved him for that.

The first symptom of my CFS that was noticeable to my friends and family was the excessive sleeping. I'd amuse my family by sleeping until three pm. Then I'd shock them by sleeping until six. Then I'd really confuse them by sleeping until midnight.

Among my family I just had a reputation for being lazy, then depressed. Among my friends I was just known for really liking sleep. I didn't understand it, I couldn't hide it, so I did what I thought anyone would have done and I bragged about it. "14 hours you say? That's nothing. I slept 21!"

Still, I was surprised that my mom was surprised this year to hear me tell a doctor I had insomnia. "How could you have insomnia? You sleep all the time." It did seem ridiculous. But I explained to her that I didn't just have trouble waking up, I had trouble falling asleep too.

I remember once, during a long period of insomnia, leaving up an away message on AIM, "wish I could sleep" and my roommate, annoyed by my chronic oversleeping, responded harshly, "ha! I think you sleep enough"

The insomnia, the excessive sleeping, the day night reversal, this might be the most miserable part of CFS for me because it's so alienating. When you are nocturnal, no one, Dennys and iHop excluded, tries to accommodate your sleep schedule. I've never even had a sleep study. Two labs said they couldn't do one on me, that I should come back when I could sleep at night. "But if I could do that I wouldn't need a sleep study!" but they didn't seem too concerned. "We can't change our schedule just for you."

Even now with the CFS diagnosis, the stroke volume in heart failure range, the XMRV positive, the dysautonomia, my parents still give me the tough love treatment in the morning: "Come on. Sometimes you can get up if you want to! You got up yesterday." "Come on, Grandma's waiting, don't disappoint Grandma!" It doesn't matter if my doctor told them that sometimes it is physically impossible for people with CFS to wake up. They still treat me like a sleep-a-holic. I had insomnia after my appointment with Dr. Cheney last week. I had less than two hours sleep before they called me to leave for the eight hour drive home. Normally I need between nine and twelve or I can't wake up, seven absolute minimum. After hours of intermittent begging and pleading on both ends, they left without me and in a text message, told me to book a flight when I woke up. I couldn't imagine booking a flight, changing planes, the shock of it shook me awake, so I was able to call them and ask them to come back for me.

I have a lot of bad stories involving my parents or sister or roommate trying to wake me up. I don't like to think about them though. But every time someone persists trying to wake me up, in my half dreaming state I think about all those times.

Dr. Cheney says day-night reversal is common for CFS. It's also a sign of impending adrenal collapse. I have at least one online patient friend who's stuck with it. The last year and a half though it hasn't bee so bad. I got some sleep hygiene info from a sleeping clinic and it actually helped. I stopped reading and using my computer in bed. The bed is only for sleep now. I try and go to bed at the same time every night, that's the hardest part. I don't keep a clock in my bedroom so I can't worry about the passing time. I just set my phone alarm. If I think a lot of time has passed and I'm not asleep I get up and read for 20 minutes then get back in bed again. Sometimes I'd do this on and off five or six times before falling asleep. Tonight I wasn't so good though, there was a lot of lying awake.

Today is going to be a terrible day. I won't be able to read or do anything useful. TV will hurt my eyes and ears. The sun is harsh and intrusive. I could try and sleep when I can...maybe in a few hours, but then I'll be up all night tonight again.

I definitely won't be doing anymore writing today. The only reason I pulled this off...I don't know. My mind's been racing with thoughts all night, most of them just fragments. I guess I just wanted to write about this so much I was able to finish the fragments and make them a blog. Tomorrow though I might come back and find it's inscrutable, like scribbled notes on a nightstand.

There's a coffee shop in Hollywood called Insomnia Cafe, presumably because it's open until 4am. I loved it, back when I thought it was OK to go out and drink coffee at 4am. But I also wondered if it wasn't insensitive to real insomniacs. Insomnia is a terrible disease and co-opting it to sell coffee all night struck me as cruel and irreverent. These things happen though. Some diseases just capture people's imaginations. I wonder if there is a bakery somewhere called Diabetes, a tobacco shop called Emphysema, a bar called Cirrhosis. I saw on Peggy Munson's blog a billboard in Australia that used Chronic Fatigue Syndrome to advertise an island vacation.

After I read Dorothy Wall's CFS memoir, I went to her website and saw she'd written a review for an insomnia memoir: Insomniac by Gale Green. I haven't read it yet but I've been meaning too, it looks good.

One of my favorite books, is The Midnight Disease by Alice Flaherty. It's where I first learned the term hypergraphia: the overwhelming urge to write. I probably found out about the book during a fit of hypergraphia by googling "I can't stop writing" at 2am. I ended up reading this article by Dr. Flaherty. As I suffered from insomnia and hypersomnolence, so too had I suffered for years from spurts of hypergraphia and bouts of writer's block. I found this passage particularly compelling:

The thing I have been working on for the last 15 years is the basal ganglia. When I first started working on them, most people thought they were purely motor -- they controlled when your arm moved, and motor motivation in terms of getting your feet started when you walk up the stairs. It's now very clear that it extends to cognitive issues as well, and to emotional ones, and they're all very tangled up in this part of the brain. I was seeing this in my patients with Parkinson's. For example, two weeks ago a patient came in who was a [newspaper] columnist and her first symptom had been writer's block -- then depression, and then Parkinson's. It wasn't a coincidence. It was the same disease affecting different parts of the basal ganglia. We were talking about her writer's block and she began to cry, because no one had taken it seriously before.

I cried, because I had never thought to take my writer's block seriously. All along it had been so obvious that what I meant by writer's block--the sudden and confounding inability to get words out of my head and onto paper, was not what everyone else thought it meant--a creative block, lack of ideas, simply being unable to think of what to write. I then became convinced I was in the beginning stages of Parkinson's. It didn't matter that my doctor told me I was too young. "If you had Parkinson's I'd call the medical journals!" Even when I learned about CFS, I still thought it was just a stop along the way. More research and my visit with Dr. Cheney finally convinced me otherwise. I had a slightly elevated ANA, and I asked about autoimmune diseases, and he said:

“You know we’ve been looking at autoimmune issues for close to 25 years because a lot of times when people march into doctors with this kind of symptomtology they’ll get worked up for mixed connective tissue dissease and they’ll start looking at ANAs antiDNAs and sed rates. Pretty soon they scratch their heads and say, 'Well you kinda fit…." but you can never see something in my opinion that meets the criteria for a mainline autoimmune disease." “We’ve been waiting for lupus to erupt out of this diseae for 25 years, we’ve never seen that.” “Never happens” "We’ve been waiting for rheumatory arthritis, never happens.”

Once in a hypergraphic insomniac fit of desperation I found Dr. Flaherty's e-mail address, told her my story, and asked for her opinion. She replied with a very nice but ultimately disappointing letter--she urged me to try mood stabilizers.

I actually once saw someone reading The Midnight Disease at Insomnia Cafe. I usually don't talk to strangers but I was sure I'd found a kindred spirit. It turned out though that she was a psych major writing a paper and the book just happened to catch her eye at the library. I went on and on about how much I loved it, how much it meant to me. She said she just liked it because it was so easy compared to all her assigned reading.

At least this took up almost two hours. Just twelve more to go!

*Edit, called my doctor's office and they were very nice about rescheduling. When I said I thought the herbs he gave me might have caused the insomnia they said he would call me today to talk about it.

I've decided to take my morning medicine and just make a go for it. Not sure what I'll do though. Maybe just keep typing my thoughts. It's comforting. I wish I had a rug hooking kit. Maybe a jigsaw puzzle...suggestions welcome!

Time out

Stem cells, stem cells, stem cells. That's all I've been thinking about this week and I've finally blown a fuse in my brain or something. So there will be no more stem cell talk tonight. I just spent over an hour trying to hash it all out with my Dad. He said I should make a decision tree. I mostly just cried. Finally we decided that the best thing for me to do is just forget about it for a week, stay off the forums, stay off wikipedia, and then come back to it and see how I feel. In the mean time, I'd been e-mailing with Joey who blogs at Dashed Hopes and Measured Steps, and he's done a very good post about stem cells that pretty much covers everything I know and am considering.

To make the distraction complete, my Dad suggested crossword puzzles should take the place of stem cells as the focus of my mental energies. I think that sounds awesome. My boyfriend and I are doing the Crosswords LA Tournament this Saturday, doubles division. So for a week I'm going to pretend I don't have CFS and act like the most important question I'm facing in life is "What is a six letter word for 'not lost'?"

Well, I'm not going to completely forget I have CFS. I'm still going to see that new acupuncturist on Wednesday. And I'm still going to look into some of the things Dr. Cheney talked about:

1. Mold - I should get my apartment checked out by ERMI dust sample

2. Water - He's been testing the IVRT reactions of different kinds of water. The best kinds are "structured waters" like Aqualiv and Penta. But the really best kind is spring water from Iceland. Other spring waters are neutral. The worst kind is distilled...which is all I've been drinking. Oops.

3. EMF's - I need to get a real phone and use a mic and headphones when I'm on my cell. He's also been testing IVRT reactions to cell phones.

He also said I should switch from glucose to dark chocolate as part of my pre-treatment for the cell signaling factors, but I've already taken care of that. :)

The good news is my echo terrain map did improve after six months on cell signaling factors, as expected. My methylation cycle is better, for one. My stroke volume was higher but he said not to get too excited about that, it can vary. If I'm going to feel any change in energy though because of this, it won't be until after the first six months so...anytime now...

I'm going back to LA tomorrow. My mission to have my six month follow up with Dr. Cheney and hang out with my parents for awhile is complete. I might have gone back Friday, but I wanted to stay the weekend because today was my brother's 21st birthday. For some reason I forgot he'd probably want to spend it on campus with his friends.

I guess I wanted to be around for his birthday this year, because last year when my parents asked me to come home for it, I didn't. This same week last year, I had my six month follow up in New York with Dr. Enlander. My appointment with him was Wednesday April 22, so my parents suggested I come home after that for Dave's birthday the 25th. I said I would play it by ear, but I ended up not going. I also wasn't too enthusiastic about my follow up with Enlander. I hadn't noticed any improvement in my energy levels from the hepapressin injections I'd been giving myself. What was really on my mind was Dr. Cheney's upcoming presentation in Virginia, also April 25th, about the results he'd gotten with cell signaling factors and ...stem cells. I was so eager to hear about it I even thought about going from New York to Virginia myself, but I didn't. Instead I stayed in New York and got swine flu.

Well, I can't say for sure it was swine flu, I never got tested, but it was all over the news the day I got it, the symptoms matched, and it was the first time I'd gotten sick in at least three years. I was meeting up with a friend from college I hadn't seen in a long time. "I'd give you a hug," she said, "But I think I'm getting the flu." “Oh, I don’t care!” I said, “I haven’t had the flu in years. My roommates get it, it passes me by.” I thought this was because I’d been eating such a healthy diet, avoiding sugar, drinking vegetable juice every day, but now I believe this was just typical CFS immune response. No colds or flus--just bone crushing fatigue. So I gave her a hug and we went out to dinner. And, as I've said here before, I've had three more flus since then, which may or may not be a good sign.

Incidentally, I also have April 25th marked on my calendar as the three month anniversary of this blog. When I started I didn't know if I'd be able to keep it up that long, but looks like I have. That at least is a good sign.

Stem Cells, Literature

Tomorrow morning my parents and I drive to Asheville. The next morning we'll meet with Dr. Cheney.

It will be my second appointment. I decided I wanted to see him a year ago when he announced that he'd given some of his patients stem cell transfusions and the results were good. At the time he was only using stem cells with older patients, but I thought it was time to see him anyway.

And by the time I did see him six months later, he'd changed his mind about just older patients getting transfusions. “The problem with the young, they have more to lose but they also have more to gain. Because it makes a difference getting your life back at 25,” he said.

At the time I was 25, now I'm 26. At the time I wasn't sure if I wanted to risk a stem cell transfusion. Last time when I left he said "Who knows, maybe in six months we'll be sending you off to Panama!" and I thought he was being a little hasty, but now it's all I can think about.

Driving home then, my mom said it wasn't worth the risk, and that really hurt me. Not worth the risk? How dare she imply that I had a quality of life, that my life was anything other than unbearable. I couldn't go to school, I couldn't work, I didn't have the energy to take any kind of meaningful action. Why couldn't she see that I had nothing to lose?

Now though I'm a little less extreme and a little more realistic. I don't have much, but I do actually have something to lose. Things are terrible, but they could certainly get worse.

A few weeks ago I was reading Michael J. Fox's book Always Looking Up: The Adventures of an Incurable Optimist. Ghostwritten celebrity autobiography isn't my usual cup of tea but I picked it up from the display table at Borders on an impulse. I thought I could use a dose of optimism from a fellow Incurable. This was last year, I read the first few chapters, got bored, put it away. But a few weeks ago I picked it up again when I was looking for something light to read. I was treated to a quick political history of the early 2000's stem cell debates from his point of view. All the research I'd been doing about stem cells, and I'd completely forgotten that they were being debated all over the news when I was in high school. The part I'm thinking of now doesn't have anything to do with stem cells though, it's about choices.

He talks about his sister, Karen, who has decided to undergo an experimental brain surgery for her severe epilepsy. The family was not as sure about her decision as she was.

My youngest sister, Kelli, later recounted the conversation she’d had when Karen told her the news of her plans.

“Are you sure you want to do this?” Kelli asked. “What if it makes things worse?”

“It can’t get any worse,” Karen replied.

“But still, isn’t the devil you know better than the devil you don’t?”

Typical of Karen, her response was terse and matter of fact.

“You don’t know my devil.”

I wasn't familiar with that expression, "The Devil you know..." but it resonated with me.

The sister had the surgery, and it worked. She spent the next 15 years free of seizures and meds. But then she had a massive brain hemorrhage at the age of 57 and died.

I assumed there was no way to know what the chances were that she still would have had the hemorrhage if she'd never had the surgery, but that's not the point. I don't know what the point is.

A friend of mine from high school is getting her PhD in biomedical engineering, so I thought I'd talk about my decision with her. She said the first question I should ask my doctor is, "What is the risk of cancer?" I could ask him, but I think I have a pretty good idea what the answer is. "We don't know." It's too soon to tell.

I know he thinks it's safe though, that's his opinion. But it's not Nancy Klimas's opinion, who's told her patients not to get stem cell transfusions until more is known about XMRV. I tested positive for XMRV. XMRV definitely means a higher risk of cancer anyway. And then there's this scary quote from Hilary Johnson:

"Why not study something about the disease that is actually quantifiable? Why not investigate why gray matter atrophies and blood perfusion in the brain is remarkably reduced? Or why spinal fluid has protein in it? Or why so many people with this disease get lymphoma? Or have virulent, active HHV6 and HHV6-A infections? Or have severe Natural Killer cell deficiencies? Or are dying in their 40s and 50s?"

Dying in their 40's and 50's. I keep hearing that in my head when I think about this decision. Maybe I'm not so young after all. My life could be half over.

Sometimes it seems like an easy choice, that I should just go for it. Dr. Cheney makes it sound so easy. Just fly down to Panama, see the canal...

"Four days later you're finished, 50 million cells, go home" "One of the interesting things...they sleep for 30 days..." "To me it's almost like they're being reborn" "They say this is wonderful sleep." "Wesley, he slept for about 30 days, then he just got up and went back to school."

Wesley is his stepson by the way, who's case Dr. Cheney kept comparing to mine.

When I told my uncle about it he said it sounded great. "I would love to sleep for 30 days and be reborn." And my friend seems to think I should go for it too. The fact the cells are injected into the blood stream and not into the brain is a good thing. So is the fact that they are adult and not embryonic stem cells. She said that made her feel better.

My gut feeling is that it's safe. But I'm still afraid. It's still experimental. It's still a risk.

So I have been thinking about it a lot but I have not made any decisions yet. I don't know if I'll be ready to decide on Tuesday, or even this month.

I never, ever thought I'd have to be making an important decision like this at such a young age.

In a story, a character is not defined by their age, accent, hobbies, or use of an ear trumpet. That's characterization. How do you show one's character? By the decisions they make.

When I really think about it, I've never made a big, character defining decision. My character has only been hinted at. Sure I've made choices, to move to LA, to go to college in Syracuse, to leave Syracuse and transfer to USC. Trips to take, apartments to rent. But none of those were really bold choices, I kind of fell into or was pushed into all of them, mostly by CFS. If I never got CFS, the biggest decisions I'd ever have made at this point would be where to go to college (there was no if), what to major in, whether or not to go to grad school, and eventually, whether or not to get married and to whom, whether or not to have children. Important, life-altering, but overall, common, ordinary decisions everyone makes and knows that they will have to make.

This is a complicated decision. I could never get into all that I've thought about it here. But actually I kind of already feel like the choice is obvious, that I should just do it. Take the chance, maybe even wholly and finally end this illness that has defined my character for the last ten years.

But I keep thinking about Joachim. Jim and I recently finished reading The Magic Mountain. Jaochim is the main character's cousin. The good soldier. Everyone who comes to the sanatorium (on the mountain) ends up staying longer than they expected. The head doctor keeps saying they need more time to heal. Another six months, another year...then you can go. Most of the characters take this in stride, or embrace it. What's six months? What's a year? That's nothing! But not Jaochim, who is eager to get back to the flatlands and do his duty. Finally he goes, without the doctors permission. He gets to leave the sanatorium and rejoin life, rejoin his regiment. But only for a year. Then his tuberculosis overtakes him and he has no choice but to come back. He over exerted himself, and he dies shortly after his return.

Jaochim could have lived longer on the mountain, but it wouldn't have been the life he wanted. Not that he saw it that way, that's my personal, 21st century American self-centered young person interpretation of it. For him, it is a matter of duty, as a soldier, as a human being. A human being's duty to live, to work, to do something.

Today I was reading Eeeee Eee Eeee by Tao Lin. This quote stuck with me:

Schopenhauer had said that -- that life was to be perceived not as a book you would write but as a book already written, something to be gotten through, so as to detach oneself from suffering, which was an outside thing, really; not actually in the text. Everything was to be accepted.

Tao Lin is a 27 year old hipster, 24 when he wrote this book. This way of thinking appealed to the 24 year old hipster in me too, someone who gets shuffled from high school to college to the job market...and the closest way you have to making your life resemble a novel is to add irony at every occasion. Lin is aware of this too:

"Irony is so privileged," Mark said. "it's what happens when you don't need to do anything to survive--it's when the things you do have nothing to do with survival and you spend forty million dollars to make Steve Zissou and the Atomic Submarine or whatever it's called."

Life is not a novel. You are not the author. It makes sense, until you find yourself at a young age in the surreal position of making a choice that could change your life in a huge way. Then what?

Agh. I shouldn't have asked that question. I don't want to answer it.

Crash or Flu? Or both?

Yesterday I had my third fever since I started Dr. Cheney's protocol, and my fourth one in the last year. This after about four years of never even getting a cold. Is this good or bad?

Reasons to think it was a crash:

I exerted myself Thursday by going to that lecture. Then, because I didn't feel too bad, I went out again on Saturday. Sunday I woke up with that poisoned feeling. I figured this was my crash, I'd done too much. But it was more than that, I had a fever and chills. My thermometer isn't great, but my temperature fluctuated between 99 and 101.9.

Reasons to think it was a flu:

My outing Saturday was to a children's birthday party. None of them seemed sick, but still, kids and getting sick just go together. Also, My crashes don't come with fevers.

Today I feel better though. The fever is gone. And I'm going to spend the rest of the week resting.

This is when I wish I knew more about CFS and the immune system theories. All I can remember right now is what doctors told me. At my first meeting with Dr. Enlander in November 2008, he asked me if I got colds or flus and I said I used to all the time but hadn't in the last couple of years. He said he found his patients didn't get colds and flus. I started his antiviral treatment, hepapressin (also known as Nexavir) and when I saw him again six months later, I got the flu the next day.

When I first met with Dr. Cheney, he also asked about colds and flus and I told him that I'd been cold and flu free for years, except for bad flu right after I saw Dr. Enlander. He said that could be a good sign, it could mean the hepapressin helped my immune system.

So if it could be a good sign I had one flu, could it still be a good sign I've had three more?

Again, this is where I really wish I knew more about CFS and the immune system, and the innate vs. the adaptive immune system, and all the different kinds of white cells. I never got to discuss it with him, but from the looks of my flow cytometry report ordered by Cheney, 13 out of 15 things checked were in the normal range. Even my "% Natural Killer cells in blood was normal, 8.37 when the range is from 6-20. I'm pretty sure if you have CFS you're supposed to be low on Natural Killer cells. But the % of specific NK cell lysis ("the amount of specific target cell lysis resulting from NK cell action) was a little high, 21.1 when the range is 6-20. The other abnormal result was %T cells in blood (CD3+) 80.65 when the range is 45-76. Not sure what this all means.

There's one other way to view my fever, from a holistic viewpoint. On Friday night, I had a long craniosacral session. My therapist told me that since my lymph had been stimulated I should go home and take an epsom salt bath or dry brush my skin. (I opted for the bath.) I did notice a swollen lymph node feeling on the left side of my throat that night, but it was gone the next day, which was a pretty good day, I went out to that birthday party. Sunday I had the fever. No congestion, no nausea or other flu like symptoms except for a headache. Mostly extra fatigue, chills, and fever. I wonder if it could be some kind of detox, my body fighting off an old infection.

Now that I've written this I'm done thinking about it for now. I'm going to resist the temptation to read everything about t cells and nk cells on wikipedia and just take a nap.

Shore Leave

It’s been just over a year since I quit school for the last time. This past year has been the first one of my life where I wasn’t in school or working, or looking for a job, or “resting up” so I could go back to school.

If you’re healthy, a year may seem like a long time, and it is! I miss being part of a community! I miss co-workers! I miss homework and exams! If you’ve had CFS or another chronic illness for a long time though, one year in isolation probably doesn’t seem so bad compared to say, twenty.

I’ve spent most of the time right here, where I’m writing from now, in my apartment, on this beautiful but ergonomically disastrous couch. I haven’t been totally housebound, a lot of the time I was able to go to acupuncture two or three times a week. I went to some concerts, the kind you sit down for. I’ve taken some trips. But for the most part, my life is in this room.

Today though I had the opportunity to get off this sinking ship and walk around on dry land. Even though I’m not officially a USC student anymore, I'm still on all the list-servs. So when Paul Frommer, USC professor and creator of the Na’vi language from the movie Avatar, was giving a lecture, I knew about it, and I really wanted to go. I just didn’t know if I would be able to. Last night, I thought, it could go either way. It started at two, and yesterday I woke up at two.

But I did it, I got up in time to take my medicine, eat a quick breakfast, and drive myself the 20 minutes to campus. I was reminded of how long it's been since I'd driven myself anywhere when I saw the dashboard clock was still an hour behind. I was the first time I'd driven since daylight savings.

I was worried I might have to do too much walking. I thought about asking a friend to come with me and drop me off right by the building, then go park, but was glad I didn’t because whoever I brought would have been really bored. The lecture was really technical. Fortunately, the building was right next to a garage, so I didn’t have to walk too far.

I had to drive to the roof of the parking garage, but I got what I wanted, a spot on the same side as the elevator. As I was walking towards it, still a half a length of the garage away, I saw a man getting in hold the door for me. I waved to thank him, because I did want him to hold it. The less time standing around waiting, the better, but I didn’t hasten my pace, which is the polite thing to do. He made a “Well come on, hurry up!” expression, so I took a few quicks steps and pumped my arms a little, to create the illusion of hurrying up, to make a little show of effort, but then I went back to walking. Just the idea of a quick jog made me want to collapse on the ground. I didn't like that I had made people wait for me on the elevator, but it’s a venial sin.

I got there five minutes early, but I was still just the second person to arrive. It ended up being a pretty small group. They must have been expecting a lot more people though, because the organizer quipped, “Afterwards there will be pizza and soda in the lounge, one whole pizza for each of you.” Someone else could have my pizza.

I was expecting the anonymity of a large group, so when that didn’t happen I was a little nervous. I felt like an imposter. When Frommer started speaking he took a little survey, “Undergrads raise your hand,” I didn’t. “Graduate students raise your hand,” I didn’t. “Faculty and friends?” I didn’t. I wondered for a second if I qualified as a friend, but I really didn’t have any friends there. I spotted an old professor, but she didn’t recognize me. She knew me way back when, when I was in her office a lot asking for extensions, but it’d been two years since I took her class and dropped it halfway through. I recognized her during the lecture when she asked a question, and it was a good one, one that I was way too out of practice to have thought of.

Overall I really enjoyed the lecture, I’m glad I decided to go. Some of it involved terms I’ve forgotten, or things I never learned, but nothing was totally over my head. It was exciting to talk linguistics again, or at least be in a place where linguistics was being talked about. I still find myself reading linguistics articles in wikipedia every once in awhile, or looking up other language's alphabets in IPA, but whatever I can do on my own can't compare to being immersed in college classes.

I liked Paul Frommer too. You could tell he’s someone with a lot of energy and a virtually limitless capacity for learning, which of course I admire. Well, covet, really. From his wikipedia entry:

Frommer graduated from college at the University of Rochester with a bachelor of arts in mathematics. He taught English and math in Malaysia with the Peace Corps, and earned his masters degree and doctorate in linguistics from the University of Southern California under Bernard Comrie; his doctorate was on aspects of Persian syntax.

He gave an example of a rule he borrowed for Na'vi from a Malayan language he learned while he was in the Peace Corps. I always thought I would do some kind of teaching abroad for a while, maybe in the Peace Corps. My mind wandered a little during the lecture and I thought about what I’d do if I recovered, would I still do it? I still want to, but I'm more cautious now. Well, afraid. What if, after my miraculous recovery, I immediately contracted some tropical disease and died? What a shame that would be.

After the lecture there was a Q&A. I had a question, but I was afraid everyone else’s questions would be really technical and everyone would think mine was silly. But I stopped worrying about that when the first hand shot up and the first question was, “Did Ben Stiller really speak Na’vi at the Oscars?” The answer was no, though he used one Na’vi word at the end. He also threw in some Hebrew. I waited a few seconds, and when no one asked another question, I raised my hand.

I remember, the last time I was in school, thinking I’d lost the ability to properly phrase good questions, but this one actually went off pretty well. He’d said at the beginning of his talk that James Cameron wanted the actors to speak the language themselves, he didn’t want any electronic voices or anything. So even though it was an alien language, it had to be constructed within the confines of human speech. He did throw in some clicks and glottal stops, which are exotic sounding to English speakers. What I wanted to know was if, creative guy that he was, he had any ideas for things he wanted to do if there were no limits, if the actors speech could have been electronically manipulated.

He seemed to like the question and went on about how maybe they’d have four different voice qualities, or two separate voice boxes so they could harmonize with themselves. When he was done he tagged on, “good question”, I thought it went pretty well, but my body was freaking out. My heart was pounding, I’m sure adrenaline was surging, I could hear my pulse pounding in my ears. My body was acting scared way out of proportion with how I was actually feeling. I’ve never been really comfortable asking questions in front of a lot of people, but it’s not like this was a huge auditorium and they had to pass me a microphone. It was the size of a classroom. I was really shocked at how “afraid” I seemed to be. I took it as a warning sign about how isolated I've been.

After the talk we were all invited for pizza and discussion in the lounge, but I went right back to my car and drove home. It was the longest I’d been out in awhile and I was tired. But it wasn’t just the fatigue, being with all those happy young linguistics students and accomplished professors made me want to cry. I didn’t feel like I would belong, I didn’t have anything in common with these people. As I’m writing this now though I realize that’s not true, we’re all people interested in linguistics, but, I don’t know, I was scared. What if I was talking to someone and they asked something like, “So are you a grad student? Undergrad?” I’d have to tell the truth, which I’m still really bad at. “Well,” I’d say, “I was an undergrad but I had to drop out for health reasons.” “Oh, I’m sorry” “Oh...that’s ok *smile*” and then the conventions of the conversation break down and you have awkwardness. Most people I think, wouldn’t ask, “What do you have?” or “What’s wrong?” but some do. And then it’s awkward because when I say “Chronic Fatigue Syndrome” I never know if they’ll have heard of it before or what it means to them. My biggest fear is that they think it still means “yuppie flu”.

Last year, still in school, when I began to realize I was missing too many classes, when I’d pulled off my first paper but knew I had absolutely no energy to do the second, when I began to realize I would probably have to drop out again, I fantasized about asking my teachers if I could drop out, get a tuition refund, but still come to class when I could, just not have to turn in any assignments, or get credit or a grade. Just learn without stress. I’d be like a ghost in the classroom, my actions would have no consequences. I’d be like a ghost to the other students too -- I used to be one of them, then something happened to me, I was supposed to leave, to move on, but I didn’t; I stayed, like a ghost. I am like a ghost, and today I haunted the campus. At least I didn’t scare any students.

New ME/CFS Documentary

There's a new UK documentary about CFS: What About ME?

M.E.- Myalgic Encephalomyelitis, the UK name for Chronic Fatigue Syndrome. Sounds much scarier, doesn't it?

Their website is here: http://www.whataboutme.biz/

On their list of people interviewed, I recognize Dr. Sarah Myhill, Dr. Charles Shepherd, and Anette Whittmore, founder of the Whittmore-Peterson Institute, which funded the groundbreaking XMRV study.

"People are suffering. But they are being told it’s all in the mind. Our aim is to investigate ME further, to put the plight of an ME sufferer in the public’s consciousness and to encourage further research and health policy reform. We hope to spread the word through this website which will have videos and podcasts on ME, short virals on the ME situation delivered multi-platform, a TV documentary aimed at a prime-time audience, a worldwide theatrical release and a docu-drama dramatizing an ME sufferer’s struggle, based on the novel “The State of Me,” by Nasim Marie Jafry."

I hope they succeed. The trailer looks promising. Please watch. They've really come at it from the right angle. I can't think of a more interesting story for a documentary, but of course, I'm biased.

"The major anger is the lack of belief."

"Don't pay attention to your own body. Don't pay attention to your own feelings. Don't pay attention to your own thoughts."