Advice for the Whippersnappers

Sometimes I think about what advice I would give someone who just figured out they have Chronic Fatigue Syndrome. It's the same thing as imagining what I wish someone had told me six years ago. I have made a lot of mistakes in the course of this illness, and I desperately want someone else to learn from them. 

A lot has changed in the last six years, but when I first got sick, there wasn't a lot of information. I didn't think about it in a very logical way. On one hand, I read a lot of sketchy Internet information about cures and ran around to doctors and naturopaths trying to end it. On the other, I bought in to the pseudo-scientific mind-body medicine that essentially says: this is all your fault. I thought that this disease was just my particular form of insanity. I looking for subtle, psychological causes, and overlooked the more physical ways I could manage symptoms, like pacing and rest. There really are things we can do to feel better. Here are a few:

0.    Be brave. This is probably the first thing someone should tell you. They should tell you this while hugging you or holding your hand. This is serious. You are very sick, and you are going to be for a long time. You are going to have to give up a lot, and you are going to be very scared and bitter and desperate. You should expect this. An extraordinary amount of strength is now going to be required from you, but you can do it. Get ready to change.

1.    Don't Push Yourself. Don't do it! This is what someone should yell at you over and over, maybe while you sit on on an examining table in a thin paper gown. I think it takes a lot of drilling to get this understood. We don't live in a society that values self-restraint, or peace, or good judgement. So much of our self-worth is tied up in our achievements, whether that means a career or a degree or the ability to dance all night. We don't know how to be quiet or alone. It's hard, but if nothing else, maybe fear will motivate you; if you don't live within your new limits, you will get worse. If you live within your limits, you might get better.

2.    Strive for Acceptance. This is terribly hard, but necessary. It doesn't mean we think we'll never get better. Why would I emotionally prepare now for five years in the future? No one knows what the future will hold, all we know is that it definitely won't be what we expect. When I get overwhelmed with this illness, it's rarely for the present moment. So don't get ahead of yourself, calm down, and see if you can accept today. One thing I've found to be true is that emotions are finite. Time and again I've been pushed to way beyond what I thought I could handle, and realized that I was handling it, even though it hurt terribly. Gradually, you work through the despair, the anger, and the grieving. They are finite, and I believe that feeling them fully can be the same thing as letting them go.

3.    You are Not to Blame. This should be obvious, but it's not. Maybe to a certain extent everyone is egocentric enough to believe that they somehow cause the external events around them, but we with a disease that science hasn't caught up to yet are particularly susceptible. Illness is a force of nature, like a tropical storm. It happens randomly, to anyone, and no matter how hard you prepare, it might really get you. Stress definitely affects this illness, so pay attention to your actions, but don't worry about some insidious little worm in your subconscious. I assure you, you are not making yourself sick.

4.    Get Religious. That said, "Why do bad things happen to good people, i.e., me?" is the question of the ages. I don't think there is any truly satisfying answer, but some people collapse under the weight of suffering, and some use it to transform themselves into saints. I can't recommend Buddhism highly enough for both a philosophical framework for suffering and a way to deal with it. I'm also pretty into Saint Theresa and Peruvian shamanism. Whatevs. But now that we have time and solitude, which are gifts many people don't have. Let's not waste them.

5.    Get Artistic. And you know what else you can do with time and solitude? You can make art! And in fact, you need to. We can't just sleep and watch NBC sitcoms. We have to do something productive; the will to work and create is a human imperative. It doesn't have to be great art. God knows we can't afford self-doubt and hyper-criticism now. There's a lot of joy to be found in creating things, in expressing ourselves and developing ourselves. In this area alone we are almost not disabled. If you need help getting started, an online class or starting a long-distance project with friends is a good way to keep going.

6.    Make a Schedule. I've always been bad at great swaths of unstructured time, and I think that having specific goals and specific time limits in which to accomplish them is essential. Try to be self-disciplined and make yourself put down that unchallenging entertainment/time-killer and learn French, make electronic music, write your memoirs, meditate, or whatever it is you really want to do. Tell yourself that you will do this-and-such from 3:30 to 4:15 and then follow through. The sense of accomplishment will be worth it.

7.    Be Wary of the Internet. The Internet is great for us and expands our worlds considerably, but there are still places in that expanded world that we shouldn't go. While tooling around searching for keyword "CFS" you will find some truly horrifying repositories for human misery. These are the slums of the Internet, the twisting dark alleyways where you don't want to get caught alone at night. They can be the vitriolic battles fought in the comments sections of CFS articles, blogs of despair and desperation, or pseudo-science websites promising miracle cures. I'm hesitant to imply that people in pain (and people systematically discriminated against) should refrain from speaking their minds, and my writing isn't free from negativity. However, I've found that these websites both suck me in and make me miserable, and I do my best to avoid them. On the other hand, I really want to believe that the Internet can be used as an organizing tool, and to get funding and research, healthy people really do have to know how sick we are and the toll that takes. I guess the optimum here, like in most things, is balance.

As you could probably tell, this is as much me giving myself a pep-talk as much as it is me imagining myself as the wise old sickie giving advice to someone else. There are a lot of issues I didn't talk about, and I realize now that I am incredibly lucky that two of the most insidious secondary aspects of CFS don't affect me. My family and close friends never abandoned me, and since I moved back in with my family, I don't have to worry about money. Those are huge issues, but I don't feel qualified to give advice about them, a fact I thank God for every day. The rest of these little chicken nuggets of wisdom are personal and hard-won, and I do wish I could send them back in time six years to that 22-year-old girl terrified of illness and unsure of what to expect.

New Charity Voting Contest

Hey!  Well, I actually did email almost everyone I know of Facebook and ask them to vote for the WPI and CAA in the Chase contest.  It was a bizarre experience.  I hadn't "come out" to a lot of my acquaintances over the years as sick, and so I went through the friends from past forgotten stages of my life--Philly, Portland, California, high school, college--and thought, "How would they react to this?  Is it worth telling them, and asking them to do a personal favor for me?"  No shame, I did it.  I actually got a lot of nice little Facebook messages back, and lots of votes. We came in 12th and won $40,000.  Not so bad.

Now there's a new and, in my opinion, incredibly confusing charity contest in which WPI stands to win $250,000.  It requires a little clicking around, but if you go to http://www.vivint.com/givesbackproject/charity/769 it will tell you how to vote, which you can do every day until June 11. Let's do a lot of clicking!

Chase Community Giving and Radical Annoyance

 I'm posting this on every CFS blog I read, including my own.  It is a declaration and a call for action!

Most of us probably know that both the WPI Institute and the CFIDS association are in the running to win hundreds of thousands of dollars in grant money from Chase Community Giving.  We know this, and we're voting, right?  Because we're an incredibly strong, vital internet community?  But...only about 5,000 people have voted.  We are getting beaten by a fucking drum corps!  Am I really supposed to believe that more people out there care about a drum corps than about doing research that could potentially save our lives?  I can't believe it!  We have to do something.

Because this issue is so important, I swallowed my pride (I usually think mass Cause Emails are annoying) and emailed all my friends asking them to vote for WPI, and although they love me, only like 3 voted.  So here's my idea and suggestion: I'm going to email or facebook message each of my friends individually, and not care how annoying I am, and ask them again to vote.  I could probably get over 100 votes that way, depending on how many of my friends are flakes.  I'm not talking about just my good friends, I mean even just random Facebook acquaintances, too.  It's annoying, but my friends will forgive me, and who cares what my acquaintances think?

Anyway, like the nature of voting itself, one person doing it alone doesn't make much of a dent, but if a lot of us do it, even if just a few of us harass everyone we electronically know, we could get hundreds, maybe thousands of votes.  Let's do it, and encourage all our sick Internet-addicted friends to do it, and even our healthy friends.  Lets get organized, people!  I'm going to post this on my blog and every blog I read, and them I'm going to spend the rest of the day harassing people, and its going to be awesome.  Please join me!

STEP-BY-STEP Instructions:

1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving.

2. "Like" Chase Community Giving by clicking on the "Like" button.

3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease, and the CFIDS Association.

4. Cast your vote by clicking the "Vote Now!" button.


Love,

Lee

Life-Changing Literary Experience

Viktor Frankl, 1905-1997

I'm going to go ahead and use the words life-changing without quotes or apologies here, for Viktor Frankl's Man's Search for Meaning.  There aren't many books like this. He asks questions about the meaning of life and suffering that are almost too important to take seriously until it's absolutely unavoidable, but that point of inevitability reaches us all.  This book that gets to the heart of what I'm always asking myself as I come to grips with life in general, and particularly my life with CFS. 

Viktor Frankl has fearsome credentials for talking about the meaning of life. He was a Jewish psychiatrist in Vienna in the 1930s, working on his philosophy of "logotherapy" when he was taken prisoner and sent to Auschwitz. Although he barely survived the camp, he came out of it with his faith in his ideas strengthened: the main motivation of man is not pleasure, or even happiness, but the will to find meaning in our lives. He discovered that the meaning he found in his apparently senseless suffering gave him the will to endure it. He quotes Nietzsche several times in the book: "He who has a why to live can bear almost any how."

"Man's search for meaning" sounds like a vague phrase, but Frankl emphasized that
all meaning is specific and situated. He says, "the meaning of life differs from man to
man, from day to day, from hour to hour...to put the question in general terms would be
comparable to the question posed to a chess champion: 'Tell me, master, what is the
best move in the board?'" He sees three ways to find meaning in life: Through a creative
work or task, through an experience or relationship, and finally, in the attitude we take
towards unavoidable suffering. In our lives, we will alternate between finding meaning
in all three.

Frankl seems to use the word "meaning" where other people might use words like "God"
or "love" or "the best course of action given the circumstances." He comes from a
scientific background, but you can't talk about finding meaning in atrocity without
becoming somewhat mystical. It's easy to see the value of suffering when it ends; you
can go back to your normal life more awake, sensitive and compassionate. But what if
it doesn't end, at least not in this life? In Frankl's mind, if the meaning of suffering were
dependent upon such happenstance as whether one escapes or not, that would render
either outcome meaningless. To find meaning in mortality is the ultimate challenge life
gives us, and one we must accept.

As I read, I found it inevitable, as I imagine most readers would, to compare my life
with his. I hope that for most of us, this experience is futile and surreal. The suffering
he endured in concentration camps is so beyond my experience that I can't actually
assimilate it. It makes me feel profoundly grateful, but at the same time, the feeling is
fleeting. Ultimately, I don't think two people's suffering can be compared. But he didn't
write this book for us to make comparisons; he meant for each of us to examine our lives on their own terms.

I sought out this book because I'm trying to find meaning in a life that's very different from the one I imagined myself leading.  Many of the ways I thought I would find meaning in my life aren't currently available to me. I wanted an occupation that would help the community and give me a sense of pride and independence. I wanted daily interactions with my friends, not to mention some kind of love life, and of course, the elemental pleasure of moving my body through the world. I'm terribly sad that I don't have thosethings.

But there are also many things in his categories that I can do. I've always wanted to
write fiction and make art, which I'm doing now because there aren't many other options
or excuses. I still have my family and friends I can keep in touch with thanks to my best
friend the Internet, and those relationships are more important than ever. I can not let
this disease destroy my soul, and I can be damn proud of that. There are times when
all I can do is lie down and feel pain, and my victory over it lies in not throwing the pain
onto those around me.

I was moved to read about what he had to say about the chronically and terminally
ill. While we look to him for inspiration, he found inspiration in people like us. He was
a doctor and no stranger to the failure of the body. He tells the story of a death from
typhus he witnessed in the concentration camp:

This young woman knew that she would die in the next few days. But when I talked
to her she was cheerful in spite of this knowledge. "I am grateful that fate has hit
me so hard," she told me. "In my former life I was spoiled and did not take spiritual
accomplishments seriously." Pointing through the window of the hut, she said. "This
tree here is the only friend I have in my loneliness.". Through the window she could see
just one branch of a chestnut tree, and on the branch were two blossoms. "I often talk
to this tree, she said to me. I was startled and didn't know how to take her words. Was
she delirious? Did she have occasional hallucinations? Anxiously I asked her if the tree
replied. "Yes." What did it say to her? She answered, "It said to me, 'I am here--I am
here--I am life, eternal life.'"

I'm not dying, thank God, but I can relate to that story. I was spoiled, too. I also take
great comfort in the view out my window, and I wish that trees would talk to me.

May 12...Happened

So, yesterday was the official International ME/CFS Day.  Whoo!  Hope we're not all too hungover to get back on the computer and reflect on our experiences.  I hadn't done any research for it at all, and I was hoping that I could just go to the biggest CFS advocacy sites, and be part of some well-organized Internet campaign.  I imagined sleek memes to post on Facebook, petitions and email campaigns all ready to go.  I found...very little.  Here's what I did.

I put a blue ribbon on my Facebook profile.  So did 26 other people.  Actually, I just put it on a picture which stayed on my wall because I couldn't for the life of me figure out how to make it my profile picture.  Then I wrote an update about CFS Awareness Day.  People on Facebook seem more receptive to my posts about webcomics or humorous observations. 

I joined this campaign and wrote letters about CFS to the President and others.  Real paper letters, sent through the mail.  The idea was that they should get there by May 12, but I was sort of late.  It's tempting to make fun of writing to the President (i.e. the heartbreaking naïveté of a patriotic third grader, a great excuse to use the word "quixotic") but it really can't be the least effective thing in the world.  A sizable staff reads every letter and classifies them by issue, and if mine have now become tally marks by "Chronic Fatigue Syndrome" that's at least something.  I'm sure they take into account that for every letter, a thousand more apathetic people kind-of feel the same way.

On a more uplifting note, these six awesome people protested outside the ME/CFS meeting of the U.S. Department of Health and Human Services on Tuesday, demanding government accountability for allowing CFS to go ignored and unfunded for so long.  Thanks, guys.

And thus concludes another successful May 12.

Healing Through Hating: Elaine Showalter

 

 

 

You all know how much I like positivity.  There are so many great things you can do, lying on a couch all day!  I'm not being sarcastic!  Everything I wrote in my last blog entry still stands, about my extreme happiness and gratitude to find that after several months of resting, I can now usually walk from the bed to the fridge without fear of collapse.  But I'll admit, I do get frustrated at times.  I would like to make it beyond the fridge.  And sometimes, in the midst of an attack of frustration, you happen upon something so malicious, ignorant and destructive that you gain an instant arch-nemesis and a way to blow off steam at the same time.  

My new nemesis is Elaine Showalter, a renowned "feminist" scholar and retired professor of Princeton University, who in 1997 published a book called Hystories: Hysterical Epidemics and Modern Media.   I'm afraid you might know where this is going.  Without any medical training and willfully ignoring the vast majority of medical research, as well as the CDC and the experiences of millions of people, she declared Chronic Fatigue Syndrome to be a modern form of mass hysteria, created by the media and gullible, self-centered women eager to find an exogenous cause for their angst.  For a more in-depth and medically footnoted refutation, see Mary Schweitzer's review.  Showalter equated Chronic Fatigue Syndrome (and Gulf War Syndrome) with alien abduction, Satanic rituals, and multiple personality disorder.  She then made the talk-show circuit, using her Princeton-backed credentials to argue with patients and doctors, promote herself, and attempt to destroy a patients' rights movement.

Showalter has a lot of power as one of the few well-respected feminist writers in the public eye, and one might think that she would use that power to promote the interests of women.  The first lesson of "Feminism 101" might be concisely summed up as: "Listen to women." Instead, she took the self-described experiences of millions of women, women already ill and struggling to make themselves heard, and silenced them in exactly the same way that the patriarchal medical establishment has always silenced women, by calling them crazy, self-victimizing, and hysterical.  A little bit ironic, maybe, a little? 

CFS affects people of all genders, but the lack of adequate health care and recognition is a feminist issue.  Eighty percent of patients are female, and the other 20% share the marginalization of having a "women's disease." CFS affects more women than AIDS, and despite the "statistics" that Showalter fails to cite, does not discriminate by race, location, or socioeconomic status.  I have to wonder, if men suffered in similar numbers, would CFS still get less research funding than hay fever?  Would millions of men be told that they are hysterical?  Would it even be called "Chronic Fatigue Syndrome?"

Another disappointing aspect of the publication of this book is the lack of a widespread critical response.  Most scholars and readers don't seem to question the right of a literary critic to declare diseases imaginary.  I could find only two serious responses, Mary Schweitzer's review and an essay of Peggy Munson's in Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome.  The vast majority of Internet buzz about Showalter is glowingly, gushingly positive.  Even user-generated content sites like goodreads.com don't seem to question her.  "People are crazy," was the pithy review of a reader who gave the book four stars.  Yes, they are!

Hystories came out a while ago, and thankfully, Elaine Showalter has moved on to topics she knows something about, but she has never retracted or apologized for anything she has written about CFS or Gulf War Syndrome.  The book is still read, and the impact it has on the dialogue surrounding CFS is still relevant.  One of the most tragic aspects of CFS is the skepticism surrounding it.  I have known so many people who, in addition to all the myriad difficulties of living with a debilitating disease, have also been abandoned by family and loved ones who are under the false assumption, propagated by Elaine Showalter and others, that CFS is not a legitimate illness.

It's enough to make an otherwise relatively positive sick girl mad.  It's enough to make her seek catharsis by writing, "Elaine Showalter Kicks Sick Women in the Teeth!" on every sycophantic Internet forum I can find.  It might not be the most adult response, but I'm not a Princeton professor.  And when I finally finish my Great American Zombie Novel based on the CFS epidemic, I'm greatly enjoying imagining a scene in which a character remarkably similar to Elaine Showalter is getting her brains eaten, and a character remarkably similar to me coming up and saying, "Oh, stop being so hysterical."

Progress

Well, here's something you don't hear on these blogs everyday...I have gotten better!  I'm pretty sure I can take it to the present progressive and say I am getting better, but I can definitely look back to three months ago and think, "Yes, I am better now."  This isn't capital-B "Better," the misuse of the word that means "cured."  It's just "better" in it's simple, literal form: not as bad.  And "not as bad" is totally great.

I was waiting to make this historical proclamation until I was sure I was right.  I wouldn't want to let optimism interfere with clear judgement.  The course of this illness is so variable, with so many ups and downs, that even if you log your symptoms every day, it can be hard to find a clear pattern.  Improvement is so incremental that you don't notice it over days, or even weeks, but when you look back over months you can see it.  In February, I could basically make it out to the couch for the day and back to bed at night.  Getting up to go to the bathroom or fridge was something that required serious psyching up for; the pros and cons needed to be seriously weighed.  And now look at me!  Making my own tea, going between the couch and the bed multiple times a day, going to the fridge whenever I want.  I don't mean to brag, but last week I did my own laundry.  And that's in the basement.  Yeah, that's right, down the stairs.

If I gave my energy level in February a 1 out of 10, I'd now give myself about a 2.  It's not a great amount of improvement.  I still can't stand up for more than a few minutes, and I don't feel like I can really leave the house, but improvement is improvement, I'll take it!  There's a big difference between a "1" and a "2," between the ability to get yourself a meal and not.
 
I also did something last week I hadn't done in several months, which is hang out with friends face-to-face.  My good friends from Philly, Zem and Jakey, came to disturb my rural Kansan solitude, and it was awesome.  We lied around inside, we lied around outside, and it was a little exhausting, but with frequent naps I could handle it.  Definitely not something I could have done this winter.

The only thing I can credit for my progress is my body's ability to heal itself when I let it. I spent six years trying to fight this illness by pushing myself beyond my body's new limits, until I pushed myself into a total collapse.  The last few months, I have tried not to push myself at all, and to really let myself rest. I am now a bad-ass of resting.  I have rested through boredom, loneliness, frustration, despair, all the things that used to send me running from how my body really felt, and I have also rested through those rare occasions when I've felt alright, those times I used to try to pack with all the things I was missing out on.  The idea is to have some energy left at the end of the day to reinvest in myself, to spend on fighting this illness.

I know I'm nowhere near healthy, but I am heartened by current trends.  I'm going to keep doing nothing as hard as I can.