Late to My Own Funeral

Well, so far it's fun being an angst filled teenager. It's better than being a bitter old woman. I can claim I only want to complain, but I don't really. The shameful truth is that I do want to be happy. Or, in deference to certain philosophers who make sense when they say happiness is impossible, I want to be at peace. The 15-year-old covers her eyes with her hand, and pretends to be with someone else. I totally sympathize, but I'm afraid I have to be sincere at this point. I have to do the one thing I really don't want to do. I have to accept my illness.

In further proof that this year has been one slow revolution around nothing, I keep coming back to acceptance. I've had moments of acceptance in the past. They are beautiful moments.  At the very bottom of your misery, and realize you just have to give up trying to change it. I really believe that something sees that white flag, and comes to help you, even if it's just a part of yourself. These moments are real and cathartic and even dramatic in their own way. I've usually mistook these moments for the real thing. I thought, "Now that's over! Now I won the spiritual acceptance game! Can I get back to my real life now?" And I went back to my primary occupation, which is waiting to get better.

And I keep waiting, and waiting, and all of a sudden my patience wears out, and I can't wait that long anymore. Here comes the 15-year-old: I have to live my life! I want my life to feel like a life again! It's my life, God dammit, my shitty, mundane, disabled real life. And it's not my illness that has made it so small, it's my lack of imagination. Or rather, it's the profusion of imagination in the wrong place.

I can imagine the future easily, that's where I am young and strong and winning everything constantly always. And I can clearly see multiple parallel universes and all the fun and friends I have in them.  It's in this reality right now where I can't imagine doing anything else but lying in my bed reading a book I'm sort of into. Acceptance must mean more than this. You can live with something, but still have it hurt you every day.

This year hasn't been a total wash. I've gotten into some good things. I've read a lot of books . I have tried to let go of the life I used to live, but I haven't replaced it with very much. I've been resting, and I've been grieving, and that is a process to respect. Right after you get hit by a car and you're lying on the pavement semi-conscious and bleeding is not the time to write poetry about it. But now I want the mourning to be over. The life I had is dead. I went to the funeral, saw it in its coffin, but I still persist in pretending it's alive and walking around with it like it's the corpse in "Weekend at Bernie's." I want to put it down, but I'm not exactly sure how. I don't know what to replace it with. The closest I've been able to come to grabbing my disabled life by the balls is writing personal essays about how much I would like to grab my disabled life by the balls. I guess it's a start.

What the Internet Needs is More Complaining

So, maybe I'll start blogging again. After more than a year, a stranger on the Internet reminded me of its existence, and I went back to read what I had been publicly thinking a year ago. I had been housebound for a few months back then, and I was trying to get a handle on the idea that my seven-year-long illness wasn't going away. I was angry and desperate, but I was also sincerely trying to find peace and acceptance. I was also trying to prove that I had it together, that despite physical challenges I, unlike you other Internet sickos, was using my pain as a platform for astronomical spiritual growth and one day I would be healthy and free and look back on that time that I healed myself from CFS by fearless blogging.

Well, needless to say, fuck all that. I'm starting again because a year later, I'm still sick and I haven't come to terms with it. My world has gotten very small and I need more than anything to make it bigger. I didn't want to make my home in the Internet community of the chronically ill, full of desperation and indignation and not-funny black humor, but here I am.

 So read my fearless blog, by which I will heal myself of Chronic Fatigue Syndrome! It is now the angst-filled livejournal that I was too shy to keep in Jr. High. My fifteen-year-old self is Editor-in-Chief, and there is no amount of rage, jealousy, or self-pity that doesn't make her feel more articulate. I don't want to give anyone advice anymore. The idea of being a wise, good invalid makes me nauseous. My goal for this new blog is to be mortified with embarrassment when I read it in a few years. I will tell you all the shit that I am not serenely okay with about being a 29-year-old invalid. I will try to make it interesting, but no promises. I will feel better for having written it, and you, for having read it, might feel much worse. Is it okay, to make people feel bad because I feel bad? Well, you can go outside and take a walk, you healthy motherfucker, I don't pity you. Or, if you're one of us, how could I possibly make you feel worse than you already feel?

Thus absolved, I will continue. Stay tuned for unhappy excavation of my fascinating life.

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.