The Dangers of "Positive Psychology"

Everyone wants to be happy. At least, that's what we believe, especially in the U.S., where all our movies have happy endings. The proponents of positive psychology will tell you that a happy brain performs better on tests, better than neutral or stressed, and can help us live longer, more productive and enjoyable lives. Sounds pretty wonderful, right? Except when you try to out it into practice, there are some drawbacks that appear. One major drawback is when things fall apart. Positive psychology has no better answer than, "look on the bright side! Find the good in this! Don't put your happiness off as something that will happen after you reach a goal... have it right now AND reach your goal!" Except that life doesn't work that way, and now studies are showing what I suspected: happiness can be hazardous to your health.

It's simple, really. Who goes about solving problems when they're happy? What's to fix? When we feel great, the world is a wonderful place. Who complains when they're happy? Who watches out for bad things coming our way when everything is fine now? Why be such a Negative Nancy or Gloomy Gus, when we can be joyful in everything we do? there are no problems when your happy! It's easy to see how things are not a problem, and therefore no solution is necessary. What, me worry?

The truth is pessimists live on average TEN YEARS longer than happy people. And the truth is a pessimistic or realistic outlook is MUCH better at handling stress and misfortune. And when you have a chronic illness, there's a lot of stress and misfortune. Worrying when you *know* something is wrong is NOT a bad thing!! Oh, sure, other people might not like my attitude, but they don't have to live my life, do they?

Leslie Martin, co-author of the 2011 book "The Longevity Project: Surprising Discoveries for Health and Long Life from the Landmark Eight-Decade Study," found similar results in a long-term study that followed 1,528 people over eight decades. Among other health-related findings, the study showed that the subjects who were identified as most optimistic as children were the ones who died the soonest.

What most people haven't experienced, and therefore they do not know, is YEARS OF FAILURE while surrounded by some of the best and brightest minds our society has to offer (doctors & nurses). That would make anyone pessimistic. Every time I was given a new medication, I was told, "This time, it will work and you'll get better!" I would pray and hope as much as I could, I would send out good energy to the Universe and work hard to accumulate good karma so that THIS TIME, it would work. I would meditate for hours, visualizing a healthy me, so that reality would manifest that outcome. I'm betting you can guess how well that worked!

I got tired of the roller coaster. I got tired of trying to keep my spirits up while enduring one failure of a medication after another. Nothing was working, and I mean nothing. I was kicked out of no fewer than five doctors offices, being told, "I'm sorry, we have nothing left for you." I mean, I know there are people who claim they've tried everything, but I actually was IN an experimental study whose protocol demanded that, "all other therapies had failed." So I am one of the few people who indeed HAS "tried everything," including Eastern and alternative medicines. It is not pessimism when it's the TRUTH.

When I gave up hoping, I freed myself from all that misery. No more would I be slammed to the ground in despair and disappointment. If a medication worked, fantastic! I would be happy then, but there was NO use to getting all worked up ahead of time. All that was doing was setting myself up. And then, when I wasn't able to maintain my good mood in the face of bad news, positive psychology made me feel like a failure because I couldn't hope. To me, hoping became a sign that I didn't know what was going on, but whatever it was, it wasn't going to turn out well for me. Hope became a feeling associated with my powerlessness to keep bad things from happening to me. Hope was the veil I threw over my head, trying to make the world soft and dreamlike, only to find that all it did was cloud my vision and keep me from seeing the potentially bad things headed my way.

So it was a HUGE relief to find out that indeed, pessimism is actually better at handling stressful situations. My experience with happiness and hope being liabilities instead of support is absolutely correct! I was NOT a failure for my negative attitude, in fact, that was the best attitude I could adopt for my situation. People who are negative and worry more are more apt to take care of the little problems before they become HUGE problems. They are more cautious and don't take risks like happy people do. They can see the problems before they happen (because they're on the lookout for the negative) and therefore live an average of TEN YEARS LONGER than happy people. Take that, positive psychology!

People think that happiness is a good idea because it feels good. But I can tell you from my own hypomanic (that happy & creative stage before full-blown, hallucinating mania) experiences, feeling good does not mean thinking good. In fact, feeling good can be quite dangerous, and can cause me to be sexually aggressive, fiscally irresponsible, and insensitive to other people's feelings. I feel good, and you feel good, so let's feel even better together. Hey, it's okay for me to spend this money! It will all work out somehow, I don't have to worry, I'll find a way to get more. Oh, come on... why did that hurt your feelings? It's all in good fun, right? We're all happy here, why are you upset? Don't be so serious all the time!

For me, trying to maintain happy all the time is also very stressful, but not in the way most people view stress. See, the body doesn't care if the stress is bad (an upcoming exam) or good (winning the lottery), BOTH times are periods of increased heart rate and a stimulated body. That means a greater drain on cortisol (the hormone that allows us to cope with stress), the hormone that my body doesn't make. It doesn't matter whether the stress is good or bad, either way, I crash! And when I have an adrenal crash, that triggers a migraine, which means hours or days of pain. I've learned over the years that the Buddhists and Goldilocks have it right: not too hot, not too cold — the middle path is the best.

So while happiness may feel good emotionally, it is NOT good physically! And my attempts at positive psychology led to one of the biggest crashes I've had since I first got sick. We cannot fool ourselves that just because something feels good that means it is good. Of course people will do better on tests when they're amped up on their own internal supply of stimulants... everyone does better on tests on speed! That's how our bodies are able to survive crisis situations, by amping up all our systems to better survive the occasion. But that's not something you want to try and maintain! You'll burn your body out in the process. We need neutral and negative. It's just plain safer and healthier.

I would like to thank Shawn Achor for his work, but I would like to add a word of caution: you pulled off a few magic tricks in your presentation that you failed to mention, and as a result have started down a dangerous path. Of course young children can be talked out of their pain, but we outgrow that at a certain age and that trick stops working. We all get to an age where we realize we're being fooled, and we don't buy the b.s. anymore. And even though there is the tendency for people to think that something bad is going on when it's nothing (cute that the guy thought he was going through menopause, nice joke), but that helped us survive because it's better to assume it's a tiger when it's just the wind, than to assume it's the wind when it's the tiger...

And THAT's the biggest danger of positive psychology— it wants us to assume it's just the wind. Oh sure, it can show you that 90% of the time it's the successful way to go! And they'd be right! But if in that 10% there lies the tiger, and you land on that tiger, you're dinner, and that's 100% failure. Even though the risks are small, the catastrophic results make it such that it's better to "err on the side of caution" and assume things are NOT going to work out. It doesn't pay to be naïve.

There's the saying, "Fools learn from experience. The wise learn from history." And history tells us that the leaders of Rome kept the masses pacified with "bread & circuses." It's a political game as old as history itself: keep the people fed and happy, and they'll let you get away with genocide. It's only during economic stress that people start paying attention to what the people in power are doing. Why question authority when God is in His Heaven and all is right with the world?

We would be wise to be wary.

WSJ Infographic:

Video:


Sources:
WSJ - "A Perfect Dose of Pessimism"
NPR - "Do You Want To Be Happy? Don't Set Your Expectations Too High"

Theme Song #HAWMC [LATE]

"Don't give up, You Only Get What You Give... by the New Radicals has been my theme song for the longest time. (video: http://youtu.be/DL7-CKirWZE) It's a great, lift-me-up tune with positive reinforcement: If I want great things to happen, I've got to put great effort into the project. If I want if to be funny, if I want it to be me, I have to be willing to out those things out there for others to works with. If I want it to be wonderful and full of whimsy, I need to bring that to the table. If I want it to soothe, I need to be soothing. If I want to learn, I need to teach. If I want to teach, I need to learn. The rule is: Don't give up-- forget the losses-- if you want, you must be willing to give of yourself.

I used to play this song whenever I was feeling down to remind myself why I need to pick myself back up again. As long as I keep going, and keep trying, and keep improving what I do... As long as I practice and remain teachable, and just keep at my goal, I will get back the effort I put in. This does not mean I have to be the loudest voice in the room. Rather, it's that if I want something, I've got to be willing to put in the work. I've got to be willing to take small steps forward over a long period of time. There is no "get rich quick" scheme, no easy launch to success.

But the fun side is, I get it back! When I put in the hard work, I get back the results of that work. Even if the results right now aren't what I want, it's a start, and I can build from there. If I want to build a mountain! I need to expect a mountain of effort, and I'm not Hercules, so that's either going to take time, help, and probably both! Lol

I know we can do great things if we put our minds to it. This blog started with a single post and an idea. I'm actually blown away by what it's become and the people I've reached, and who have reached back to me. There is such an amazing community out there for those of us who must live with a chronic illness. I feel so fortunate to have you all (and all the friends & family too!) as a part of my life! "You've got a reason to live!"

I used to wonder how I would fit in if I no longer had work as a part of my life. I knew I didn't want to just waste away reading the Internet or staring at the TV. So I made my time on the Internet productive, and kept writing and honing my professional skills in essays, even though I wasn't paid for it. Later that blossomed into the idea of the blog, and now I've turned what was a detriment into a positive force in my life! Oh sure, I still suffer the bad days, but bad day or good, it's all material I can use to help myself and all of you!

Very early in my illness I saw a sign, "Truth brings relief to the voice that speaks it, and hope to the mind that hears it." I have learned on here that I am not alone. I may still be a little weird and misunderstood at times (har, har), but I'm not alone. And my feelings are understood, even if my words aren't. There are so many people out there who care for me, and I wasn't even trying! They like me for me, and the whimsy that I bring just from sharing the things I like with them! I didn't have to perform, or acheive, or prove myself. I just had to be myself and that was plenty enough.

I may be at the mercy of a chronic illness, but that doesn't diminish my spirit!

The Grinch Has Nothin' on Chronic Illness

It will happen when dealing with a debilitating chronic illness---your disease will do something that scares you. There's one symptom I know to watch for that means Really Bad Things for me: orthostatic hypotention, a.k.a. blacking out upon standing. It's how I knew my disease had left remission in 2009. It should not be happening now; I'm on corrective medication. That it is happening is Bad News. So rightfully, I'm frightened. Add to this one of my pain meds has quit, with the new one not scheduled to be available until the first of next year and the holidays aren't so jolly.

I have to remind myself to care about the holidays because I know other people care, and bigger still, they can't tell that my indifference to the holidays is because I'm so preoccupied with much bigger issues. I become hyper-focused on daily survival (because that's what it takes) and I lose what month it is. Time becomes a blur---either I'm dealing with symptoms, or dealing with what I had to put off because I was dealing with symptoms. I learned a long time ago in times like these, I have to limit my outings to once every few days... I need at least 2 days to recover from the last 2 hours I left the house. I get about 3 hours of normal activity a day. The rest is in battle with my own body, and it's exhausting! It was just Halloween last week, right?

To cope, I watch a LOT of Netflix. My current escape is anything Anime, as long as it's not about giant robots. The Japanese are very understanding of ignorance, seeing it as an opportunity for giving the gift of education, rather than something to necessarily be ashamed about. I grew up under the rule that if you didn't know, you were ridiculed, so it's a refreshing change of pace. So they use their cartoons to educate kids on manners, how to resolve conflicts, how to deal with bullies, and all without being condescending like those After-School Specials you and I grew up with. And it also reminds me of when I worked at Nintendo of America in Seattle, when I was one of the few people who wasn't bilingual. I remember the sound of Japanese going on around me as business was conducted. I remember how much I struggled to learn phrases like "Thank you for the food, let's eat!" and "Thank you, it was very good'" Those were happy times...

Because I get sucked into that microcosm of surviving moment-to-moment, just trying to claw my way back to normal, I forget what my strength is... that I get back up again. I can't keep up with normal folk, but normal folk don't know how I do what I do.

From my point of view, it's like I'm weathering a storm and just hoping this time, the house doesn't come down around my ears. But that's not what others see. They're not in it, so they don't know that I get scared every time, that I despair every time. All they see is that I go through something like that, and when it's over, I get back up again, like it never happened. They don't understand how it's possible to be so old-hat at suffering that it becomes more of a nuisance and a bore. I know that mystified me when I first got sick. But I saw it happen through the movie Frida, and now I'm finally at that magical place--I'm bored with these health crises. I'm tired of it. It's no longer scary, until it is (and then it's really scary), but that too, has become old and stale.

The difference between then and now is, I actually get tastes of real life between the suffering. If it was all suffering, I don't know how long I'd last. I really don't. But now that I've had moments of life again, all this suffering is just an interruption. I know it's just b.s. I have to push through until I can wake back up to life again. I don't have time to despair when the sun is shining. I don't know how long it's going to last. I've got to take advantage of it, the second I become able to, otherwise I'm wasting very precious time.

Other people see that as strength... my new roommate doesn't understand how I do it. But it's easier than you'd think when you don't really have any other choice. I've been forgotten before and had people stop inviting me out. They thought I'd left. I had... kinda. Not by choice. But how do they know that? Hear it enough, and it sounds like an excuse, no matter how true it is. "Call me in January!" I ask, knowing that no one's memory lasts that long.

So I've decided to start throwing "Still Alive & Kicking!" parties, to let people know when it's cool to start calling again. People want to be polite, but we have no etiquette book on chronic illness, much as I want to write one! lol Seriously, though... we have parties to let people know about weddings, babies, product launches... why not one to let folks know I'm back in the game? And it would be a great way to sweep away those post-trauma blues.

So while my illness may have stolen Thanksgiving, Christmas and New Year's Eve... I'll throw my own festivities just as soon as I'm able. Coming to a Friday Night in 2014! Just you wait & see! I'll be back, baby...

How about you? Ever had a "Get Out of Hospital" party? What did you do? How do you cope when your chronic illness steals holidays from you?

Perspectives on Heroes

What a lot of people don't realize about chronic illness is it's often a sign of a medical success rather than failure. After all, we're still above ground. My disease should have killed me 11 years ago. I'm living a life a should not have been able to. And now that I've got enough pain control to allow me to enjoy that life, I, too, can finally call it #epicwinning.

Oh sure, my life is nowhere near what I thought it would be when I reached this age. Nowhere near. I was in a house yesterday that felt like where I aught to be rather than where I am, and it made me sad. But then I have to put things in perspective: I have a chronic illness. I'm a not a victim, and my life was not cut short, but it sure got close! So is it any surprise that where I though I'd be doesn't match reality? Not really. Who plans on getting deathly ill?

"Then after college I though I'd get a chronic illness, because you know, Paris in the spring just can't compare! And you're never too young to have a major surgery!"

At some point we've just gotta laugh because you realize we're doomed no matter what. It's just what flavor off doom do you want to have? Sometimes it's just gonna suck no matter what. At which time, it becomes pointless to focus on the fact that it's gonna suck. You've got to look at what else you've got.

I was playing chess with a friend of mine, and he was sure he had me beat. He had put me in check a number of times and was closing in for the kill. It was hopeless. I was trapped. There was nothing I could do. So I took a deep breath and I pulled my eyes from the conflict. There wasn't anything I could do there, but perhaps elsewhere there was something I could do to slow him down. And then I saw it. He'd left himself completely open! In that turn I was able to put him in check, and two moves later it was checkmate. I'd won! He was so surprised and upset, he started yelling in the middle of the coffeehouse! It was priceless.

Success isn't a destination far in the distance in front of you... it's what you leave behind you. It's what you're able to build up over time to reach your goal. The goal doesn't hang there in the air. It stands on everything you have built up to it. And every part of your life counts, even the parts you think don't matter. Sometimes especially the parts you think don't matter. Or the parts you're ashamed of and think you have to hide... those most often are the parts that make you awesome.

Think about it---we don't love our heroes because they had an easy path and waltzed carelessly through life, winning every battle. We love our heroes because they have fought and struggled and overcome great difficulties. We value the struggle, even if we don't like that we're going through it at the time. We appreciate hard work, our own and the work of others, because it's work. When we're struggling it's easy to get so focused on the battle we're in, we forget the other side of things. It's easy to get so lost in the doom that is approaching, that we don't look for opportunities elsewhere. But if we're lucky enough, we catch one in time to save our @$$. And that makes the best hero's story: snatching victory from the jaws of defeat.

The fact that I'm sick isn't what's important. Everyone has something with which they struggle. Mine just happened to take this shape. That my life isn't what I though it should be should come as no surprise. When these kinds of things happen, of course life is turned topsy-turvy. I can't expect to have the same kind of life my peers have. But that doesn't mean my life hasn't been successful. I've been plenty successful with what I have had to deal with, and my past is my proof.

I cannot compare what I've been able to do with that of someone who hasn't had my struggles---it just isn't a fair comparison. And if you were to look at my life in full perspective, I'm a hero on a mighty quest: struggle is the name of the game. I cannot say that just because I see my doom barreling down upon me, that then means I am doomed. Victory can come from the most unexpected places, in the most unexpected ways. I haven't lost at life because I've got a chronic illness... I've won against death! That's the most we can ask of any hero.

It's Official*! I Am No Longer Disabled!!!

Well, folks... I've done the impossible: I have left the the disability rolls! According to Social Security, "less than one-half of one percent of Social Security Disability Insurance (SSDI & SSI) beneficiaries" become 'non-disabled' —42 USC 1320b-19, Section 2(a)(8). Who da man? I'm da man! But this fact hides a difficult truth: my life is still far from normal.

I am amazingly happy, and I am amazingly grateful, but if I said I didn't mind that I'm still sick, that would be a lie. I do mind sometimes. It's difficult to live in the between. I'm caught between a world where healthy people are expected to be able to fulfill certain obligations. But I'm still not healthy, so I often fall short. Sometimes I feel like I've pulled off exactly what I set out to do, I have made this look awesome... but now people expect me to be awesome as well, and that... I'm not so good at. Heck, I struggle to do "normal people things," like stay on top of the laundry, keep up with my bills, etc. I can do work, and a little bit on the weekends, and that's it. I've learned the hard way that I have to include socializing in there to fulfill my psychological needs, otherwise, I end up feeling like I have no friends, crying on the couch with a blanket and a half-gallon of ice cream!

So I have to keep everything in a fine balance, and I have to obey strict, self-imposed rules, otherwise this whole delicate machinery of my life comes crashing down. I've set things up like a Rube Goldberg machine* in order to achieve what I have. The time I put into the doctors allows me access to the medication I need to control my pain, which allows me to work, which allows me to afford the medication. The medication side-effects require that I get 10-12 hours of sleep a night. Work requires that I be there at a certain time. Which means I have a set bedtime in order to get to work on time. That means I also can't blow my sleep schedule on the weekends, otherwise it's too difficult to get back on track for Monday. That limits what I'm allowed to do, and who I'm able to see, on top of the limitations placed on me by my disease.

My disease means that I don't wake up like normal people. Most people have cortisol kick in around 4am to help them start the waking process. My body doesn't do that because my cortisol comes from a pill. The way I wake up is with adrenalin, because my body has realized that I'm not producing cortisol, which means I better wake up, or I could die! So my fight or flight mechanism is what wakes me in the morning. In a friend of mine who has adrenal insufficiency, she wakes in fight mode. She's even woken up kicking and punching. Me, I wake up in a terrified panic. I can't even use an alarm clock, because that freaks me out so bad I would need a pill to calm down. So I wake up to the gentle sounds of talk radio instead, and skip the chill pill. And my disease also means that I must take my pills at a set time in the morning, so that I'm able to function properly for the rest of the day. It's all very complicated and intertwined.


Rube Goldberg Machine
I was still so proud to make that phone call to Social Security. I was also terrified, because this has been my life for the past decade, and I've gotten accustom to many things, but also very proud. I still shake my head sometimes in disbelief. I've done it. It is possible. I've put my life back together again. I'm walking among the working, and I'm one of them. I pay taxes, instead of being on the government doll. I'm a contributing member of society again! I have made my crippling disease manageable. Wow!

So my message to you is, keep trying. If you have to stop and stand back and re-evaluate some things, that's okay. I've taken a year off from my medical struggles to rest and recuperate. Sometimes that's what we need to then charge back in there with all our might. But keep trying: the impossible is possible. It make take years and a strange, wandering route, but you can get there. I did. I'm living proof (pun intended).

Less than one-half of one percent (<0.5%)... but I did it!
Shiny!!!!

[*Update: Nope, didn't make it.]

No Happy Thinking Required

I'm bringing this post back from the vaults, it's a post from the very early days of this blog, when I had little exposure. Now that a few of you are listening (*waves*) I'd like to revive this piece.

First, let me introduce you to this internet gem... (edited for work-safe content)

A 23-year old medical student makes lists of all the tasks that he must accomplish each day. He spends hours studying and refuses to go out with his colleagues even when there are no tests on the immediate horizon, preferring to spend his time looking at specimens in the laboratory. He keeps meticulous notes during all his classes and prefers to attend every lecture, not trusting his colleagues to take notes for him. He is doing well in school and has a girlfriend who is also a medical student. Which of the following disorders does this student most likely have?
A. OCD
B. Obsessive-compulsive personality disorder
C. Obsessive-compulsive traits
D. Schizoid personality disorder
E. Paranoid personality disorder
[and written in] F. F*** you, that sounds totally normal. A**hole.
[Full article: http://www.globalnerdy.com/2011/05/04/thats-not-ocd-youre-just-a-slacker/]

Now, let's look at this little gem picked up from a site offering professional services (yes, for money) for coping with chronic pain ...

Catastrophic thinking involves magnifying a negative situation so that it seems more negative than it is, worrying and ruminating about it, and holding pessimistic beliefs about the future. It makes coping with pain more difficult.  Here are some examples:

“My back is killing me.” (magnification)
“I can’t stop worrying about what my headaches might mean.” (worry and rumination)
“No treatments will ever help me.” (pessimism)
“My life is ruined because of my pain.” (magnification)
“I spend most of my time thinking about my pain.” (worry and rumination)
“I’ll never get better.” (pessimism)
Catastrophic thoughts don't help you cope with the pain.

*rolls eyes* Here's my take on the above:

My disease is killing me. I carry an emergency shot and wear a medic alert in case it tries to suddenly, which it has. Ain't a magnification if it's true. And I have to remember how fragile I am so I can act with the appropriate care. That's just responsible.

If I stopped "worrying" about what my headaches might have meant, I'd be dead now, thanks. I'm going to continue to "worry" about my symptoms, because symptoms mean there's something wrong, a**hole! (to steal from the line above...)

No treatment is possible right now. That's not pessimism, that's just a fact. Soon as that changes, I'll do a dance of joy, but until then, I've got to live with reality... not "someday."

My life has been ruined because of my pain. My career? Over. Finances? FUBAR. Credit score? Ha! Having progeny? Not possible. Scars? Lots. Irreparable damage to my body? You bet. That life? Gone. I will never be the same. Again, not a magnification if it's true.

I do spend most of the time thinking about my pain. But that's because I'm usually IN pain. I use denial as much as possible, but I can only do so much of that safely. And there are other responsible reasons to think about it even when I'm not in pain. Worry and rumination aren't inherently bad things!

I'll never get better. This is both true and not true. I'm not going to get better but I can live better. This is a degenerative disease. The only thing I can reasonably hope for is better management of my symptoms. But it's like throwing a wet blanket over a radio: sure it muffles the sound, but the problem is still broadcasting loud and clear. That's realism, not pessimism.

*sigh*

The problem with these well-meaning sites is that there are going to be people, like me, who look at that list and think they're failing somehow because they can't get to these so-called benchmarks of psychological health. But it's not a failing of ours... it's a no-win situation imposed by our disease. 

So let's try rewriting that list a bit more positive-realistically...

My disease is killing me, but it's been losing so far! Ha!

My symptoms may mean something important. I will trust my intuition and work with my health providers to create a constructive plan in addressing them. 

No treatment may ever help me, but I can keep an open mind and give new ideas a chance to work. Even if no treatment ever does help me, I can say that I tried and find other constructive things to do with my life in the meantime.

My old life was ruined by my pain. So I'm making a new life that thrives despite the pain.

I may spend most of my time thinking about my pain, but I make sure that it is within reason. If it is to prepare for, manage, prevent or resolve my pain, that's responsible thinking. If it's to look for new opportunities or advancements in pain treatment, that's okay. But I will make sure I also have information on current events so I can keep up with polite dinner conversation.

I'll never get better, but I don't have to. I can do the best with what I've got left and make this look Awesome.

I lived for years without hope. Hope can be a liability when dealing with a chronic illness. I got tired of hoping this next drug would work only to be disappointed time and time again. My heart would break each and every time the treatment failed. It became too much.

So I said: Screw hope. I don't need it. I don't have to believe in these pills to make them work. It's not like in Peter Pan where I need happy thoughts to be able to fly. All I need is tenacity. All I need to do is not. give. up.*

And the strangest thing happened... I improved my situation anyway. No hope or happy thoughts required.

There's a story from WWII about the allied forces hearing that the Germans were taking no prisoners; they were just slaughtering everyone. The Germans believed this would have a demoralizing effect: taking all hope away. What soldier would want to fight if it was certain they were going to die? Why fight when there's no hope of a tomorrow?

It had the exact reverse effect. When the allies figured there was no way out, the muscled up. The Germans aren't taking survivors? Well, let's take out as many as we can because that's the best we can do. They fought like tigers.

I say, so what if the situation is hopeless? That just makes me standing up to it that much more awesome. Yeah, this disease is big, scary, and frequently totally overpowering. It sucks. It's unfair. It's only gonna get worse before it kills me. So what? No one gets out of this life alive... but I can face it with dignity until then.

"Our arrows will be so numerous they will block out the sun." - Persian emissary
"So much the better...then we shall fight our battle in the shade." - Dienekes, Spartan 

As recorded by Herodotus, Battle of Thermopylae, aka The Last Stand of the 500

P.S. I learned that you *can* give up, if only for a little while. I gave up for a few months here & there... but I would get tired of that, and eventually get back to researching, networking, reading, etc. And when I got back too it, I found all sorts of wonderful new discoveries in my absence. So don't feel bad if you have to give up for a while. You can't stay at the front all the time.

Stop Negative Thoughts

Before I started therapy, my mother used to live in my head. She'd watch everything I did, and provided a constant stream of negative feedback. If I did something wrong, she'd yell at me and let me know how stupid I was for not seeing these consequences ahead of time. If something was wrong, she'd explain to me how it was all my fault, and that this was evidence of how rotten I was. If it wasn't my mother, it was my grandmother ("You dummy!") or my father ("Goddamnit, get your $#!+ together!"). They would scream at me, in my head, all day long, and then made sure to take a thorough inventory of everything I'd screwed up, and tell me all about it as I was trying to fall asleep. It was a brutal mental onslaught. And no matter how much I screamed back at them (in my head), I couldn't get them to shut up.

Finally, I asked my counselor: "How do I get that voice in my head to shut the f**k up?" (I had an awesome relationship with my counselor.)

"I'm so glad you asked," she said smiling. "Most people don't have the courage to admit they have that voice---or voices---in their head. They think it makes them crazy. But that's perfectly normal. Would you like to do some EMDR* on it?"

"Yeah! That's be great."

EMDR, for Eye-Movement Desensitization Reprocessing, is a type of therapy that allows the patient to detach from emotionally-charged memories, and look at them from a less personal point of view. And my counselor had special training for trauma recovery designed in Seattle. And she knew what was coming, because it was something true of all people...

What I discovered was, it wasn't my mother, or my grandmother, or my father yelling at me. It was ME. It was my inner child, scared and insecure, who had put on Masks of Authority to appear like my mother, etc., so that I would pay attention and be careful. It was actually a perverse form of self-love, where I was trying to protect myself, by getting mad at myself. When I was screaming back at myself, all I was doing was yelling at my most vulnerable self.

So, instead of fighting fire with fire, my counselor gave me a new thing to say:

Hi, I understand that you are trying to protect me, but this is not helpful right now. If you could leave me alone for a little, I'd be able to concentrate on this more, and be more careful. So, could you please be quiet for a little while? I appreciate your trying to help, but I'm okay right now. Thank you.

Later that night as I was setting about some chore, the Voice started up with it's barrage of negative commentary. I stopped and recited what my counselor told me. And, like magic, the voice went away! A sense of lightness came over me, and I was able to complete my chore in peace. I even did a really good and thorough job. So I stopped again and told my inner child:

See? Everything worked out! You don't have to yell and scream at me for things to work out. It's okay. I've got this managed.

Since then, that voice is mostly gone. Oh, sure, it pops up every now and again, but I just remind it of what I told it the first time, and it goes away again. I am, for the most part, left at peace. And it's a beautiful thing.

Try it! Share your result here!

What Do I Stand For?

I was sitting with my (former) roommate Mike last night, having drinks, and lamenting my current existential crisis. I knew that I had to figure out my direction in life, what it's all for, before I dove back into work again... because once work hits, I won't have time or energy to even ask these questions to myself. It will be work and managing my health to work, and what's this all for again?! I needed to figure out now, during this break in my contract, what I stand for and what I want out of life. I needed some guiding star, otherwise, what's the point? So Mike told me the story of two women stuck by tragedy...

Both had lost their children to violence: one to a gang shooting, and the other to a hate crime. Both women were obviously devastated by their loss. Neither he nor I could imagine the pain that either of these women suffered. And one woman, justifiably so, was left broken and shattered by the experience. She hasn't recovered yet, and no one blames her, because of her experience. But the other woman used her grief to fuel a not profit organization that turned into the NOH8 (No Hate) campaign. She took her pain and turned it into something amazing for others.

It's not difficult for me to answer the question in that song: "What do I stand for?" That's easy. I stand for the rights of the disenfranchised---those struck by chronic invisible illness, who are disabled by their disease, who can't advocate for themselves because they are too busy trying to manage their own illness, and the havoc it brings. I want to shine a light in the darkness to say, "Hang in there... You don't have to walk this alone. I know what you're going through, I've been there myself. Whatever you're going through---no matter how helpless and hopeless you feel---you still have value to me. You're amazing for what you're trying to survive. Give yourself props!"

What I don't know how to do is work towards that goal and work at the same time. I know what I need to do to get my message out there, but that takes a lot of work... work that doesn't pay. So I need to find a way that I can work for what I stand for, and still keep a roof over my head and medication in my system. THAT is what is totally daunting to me. Trying to figure out how to survive in the meantime... oh, that's big.

But I do have something to stand for, and it's about time I got back to it. I'm not like other people, walking around, wondering what their life is about. I know very much what my life is about. I know very much my purpose. Most people aren't that lucky. I found out that my best friend from college died day before yesterday, and it shook me. He was only a few years older than me. We never know how much time we have on this planet. Time for me to stand up.

[THP] What's My Mountain?

Sometimes, it's really difficult to have direction in life. Should I take this job? Should I sign up for that project? Should I go back to school? It's difficult to know what's going to make us happy. Additionally, our brains are particularly bad at truly anticipating how something is going to affect us. We will predict that a bad event will feel much worse than it ends up being. We're equally poor at determining what will actually make us happy. And that's because only about 10% of my outside life correlates to my happiness. The other 90% is generated internally. Great! Now how do I generate it?

I believe the answer is revealed in a commencement speech given by Neil Gaiman. In it, he talks about never having a career, just having a list of everything he ever wanted to do with his life: write a novel, make a motion picture, make a comic book. He set those dreams up as his "Mountain" and then he made his decisions base on whether or not those decisions would take him closer, or farther away from, the Mountain. He got his first job as a journalist, because that allowed him to ask questions. He could get his answers on how to get further along towards his Mountain that way.



We all have a Mountain in us. It doesn't matter if the idea is big, that's what a Mountain is supposed to be! It's got to be something we can see from far away, large enough that it can attract and hold our attention, even if other things appear on the horizon. A Mountain is something that, after days of trudging a hard path, we can still look up and see that we're heading in the right direction.

That's why it has to be your Mountain, and not anyone else's. If the goal is to build our happiness, then it can't be someone else's Mountain. That makes them happy, not us.

Find Your Mountain
Take out a sheet of paper and make a list of everything you wanted to do with your life. It doesn't matter if it's impossible, put it down anyway. Impossible doesn't matter. The Dream is what's important. We first need to identify what those dreams are, then we can worry about possible or impossible. So close your eyes if you have to and think back to when you were a child, and everything you wanted, even if it's something as fantastic as meeting Spiderman. Just put it down. Did you want to walk on the face of the moon? Be a race car driver? Create your own neighborhood? Breathe underwater? Make video games? What ever came to you in a dream that you thought would be neat? What do you get your hair on fire about? Write it all down. Those are the stones that make up your mountain.

Not Sure? Hampered by Disability?
Don't worry. If you're unsure, or if nothing quite grabs you enough, that's okay. It may be that you have correctly surmised that you don't have anything you're (yet) passionate enough about. That's okay! I stumbled upon what I was looking for. I just followed what seemed like a good idea until then. And surprisingly, all my choices along the way, even though I didn't' realize it at the time, have played their part.

If disability stops you then try to come at the issue from a different angle. Perhaps there's a way to be involved in a new way that accommodates your needs. This isn't always possible, or sometimes it hurts too much to be involved in activities we used to love in a limited capacity. That's understandable and natural. In that case as well, it's probably just a matter of time. You need to explore as much as is possible, and draw from that new things that move you.

New technologies that empower the individual are being designed all the time. Things will become available that weren't before. You'll have new experiences, think new thoughts. Each day, a new beginning.

If you know a direction, excellent. Go there. If not, look inside for who you are, look outside for what you like, and live to experience new things you haven't tried before. It will come to you. You can relax.

I don't have enough money...
Contrary to popular belief, it's not the next big thing that's going to launch you. It's like that old nursery tale about the tortoise and the hare. Slow and steady wins the race. Japanese Kaisen says “Don’t write a book, write a page…” You might not have enough money for the big plan, but you might have just enough to get a small project started that would allow you to showcase, demo, or even kick-start the next phase.

I don't have enough education...
First, find out if what you want to do requires an education. If it does, figure out if it's a formal education you need, or if certificates and exams are more the industry standard. Remember that where you graduate from doesn't always have to be where you started. Figure out where you want to be, and work your map backwards from there, until you're able to connect it to where you are now.

I don't have the spoons...
See if you can delay gratification, and just work on a slower time table. If you symptoms are managed, these things are possible, if we're able to not worry about when it gets done, jsut thatit gets done. We will have to reassure ourselves, however, that jsut because things are slow, doesn't mean they're forever stopped. It just takes a little more patience to see progress.

I don't have enough symptom/pain control...
Then don't worry about a Mountain right now. You're in Epic Battle! You've got other things to contend with. If you're able to do things with your Mountain, great! If not... no sweat! You've got other, higher priorities. Once your symptoms become managed, then you can look at really setting a course again. Notice I didn't say cured.... I said managed. Scientific studies have shown that if symptoms are managed, a chronic illness has little to no negative impact on a person's happiness. In fact, it can even be a benefit. However, if the symptoms are not managed, it can be a living hell that's taking all your concentration to deal with.

Don't worry. Your Mountain will wait for you. It will not abandon you. And you might be surprised at how far you're carried forward despite your limitations, once you get some breathing room and a chance to check over your shoulder. There's the constant feeling that you're missing out on life with an unmanaged chronic illness (sometimes even with managed ones). That's natural. That's because we long to do, when we have not been able to do. But that's like summeritis in the last few weeks of school, then a month into summer break, yelling, "I'm bored!" You know all too well what you're missing out on. So use now to make those lists of all the things you want to do, so that once things are managed, you can pounce on those dreams like a tabby on catnip! Or, if it's too much pain to think about it, just relax and know that time changes things. Opportunities arise from the strangest corners...

What are some of your suggestions, or tales of your experience, in looking for your Mountain?

Previously in this series: Building New Habits, Breaking Old Ones

[THP] 20 Minutes of Happy Memories...

As part of my phase in to This Happiness Project, This week, I'm starting the exercise of blogging for 20 minutes on a positive experience, past or present. The idea is that by activating those neural pathways, I will strengthen my ability to recall happy things, even in times of stress and sadness. I'm going to be trying this for 2 months (along with my usual MTLA posts). What's two months to try out a theory, right? The scary thing is, I'm actually really, really bad at this!

Let me just try to start by listing times that I know I've been happy, rather than pulling up specific occurrences. I've been happy: dancing, painting, figuring things out, coming up with a delicious turn of phrase, learning, spending time with my friends debating or enjoying the outdoors, learning about new people... My life has not been a lot of that until recently. I've had ten years of my life not being that. Let me shake off the cobwebs here!

I had a great night Monday night. I went out with a friend with drinks where we were able to share some deep, meaningful conversation, have some great laughs at our own expense, and marvel at the wonder of the Universe. I always love conversations like that, and I'd like to think I'm spoiled by the number I've been able to have in my life. It's conversations like that, that renew my charge forward. I got a great line too: "I don't know whether to thank you, or smack you, for being so right." What can I say? I recognize my kind...

We completely lost track of time. That's how good the conversation was. It was supposed to be drinks to beat rush hour and it turned into, "I needed to be home in bed a half hour ago!" We noticed it got dark, and then kinda forgot about it, until: Oops! Still, he's got a new book for me to read, and it's one whose principles seem to actually work... and it's an ebook no less... Pretty spectacular. I enjoyed my energy drinks, he had his Guinness, I ordered some steak and fries. We talked about the behavior of people and positive attitude training, and how hard it is! Oy, this is a lot of work. But when you see it pay off so quickly, it's like ...man! Give me more of that!

If I miss a day, I know from past experience that the best thing to do is don't think two things about it, but apply yourself next the next day. New habits are difficult, and this is about progress, not perfection. This is about happiness, not getting things right. This is about enjoying this and not beating myself up, but going, "Yup. Happens to the best of us. Keep going. It will become habit soon enough." Everything has a learning curve, even if the instructions are understood. If we do everything right, all we're doing is going through the motions. It's only in recovery that we learn how this stuff is really done.

I had to start my 20 minutes over because I became a Negative Noodlehead two days running. I was ready for a fight, a struggle. I wasn't ready to relax and remember happiness. But I've started over until I was able to think of something, even if it was just Monday, and get some positive experience down on paper. Yes, I am coming out of a dark time. There were moments of brightness in it, but the daily pain would steal the enjoyment away, much like a screaming child can make an otherwise enjoyable plane flight a living hell. (My sympathies to parents who travel!)

I had happiness before then, but that's trying to remember a time before I got sick, and all I end up doing is seeing the sickness pop up in my memory, so I'm going to try for more recent times when the illness was there, but managed. That's only been a few months, but I've been able to go camping since then and even rode a dirt bike! I can tell about that next time. My 20 minutes are past up!

#NMAM Blogger's Choice: Strange Behavior - The Physiology of Migraine Mood Swings

Migraines are very interesting things because it's an attack on the whole nervous system. Migraine effects the whole body, and included in that is mood and behavior. One friend of mine became apologetic when he got his migraines. He couldn't stop apologizing for himself and thanking people. Beyond my strange cravings (cigarettes---the real kind---not the e-kind, Red Bull, chocolate, super-sugary candies), I have mood swings from here to Egypt. I can get super creative, sexually aggressive, and love the world (also known as hypomania), I can have panic attacks that freeze all decision making, or I can have deep, suicidal depressions. None of this is controllable through medication. I'll explain some of the reasons why.

One of the functions of migraine is that the body loses all serotonin. It loses its supply in the blood, it loses its supply in the brain. Migraineurs (those people who suffer from/survive migraines) just piss it out. It's measurable in the urine.

"Disturbances in serotonin levels are associated with most headaches. In migraines, serotonin levels increase before onset and then decrease during the headache phase. In chronic tension headaches, serotonin levels remain low all the time. As a result of lower serotonin levels, nerve impulses move along the trigeminal nerve to blood vessels in the meninges, the brain's outer covering. This causes blood vessels in the meninges to dilate and become inflamed and swollen. The result is a headache."
- Phyllis A. Balch, CNC, Prescription for Nutritional Healing, 4th Edition: A Practical A-to-Z Reference to Drug-Free Remedies Using Vitamins, Minerals, Herbs & Food Supplements

The initial burst of serotonin causes hypomania and/or panic attacks. There are short-acting drugs for the panic attacks, but no short-acting medications for hypomania. The subsequent lull in serotonin causes the suicidal depressions. There are no short-acting medications for that either. Additionally, drugs like SSRIs are useless. These drugs try to preserve the brains supply of serotonin by preventing re-uptake of serotonin by the cells. But when the brain is dumping it's supply.... That's like putting a lid on a bucket of water to try and keep the water from splashing out, when there's a hole in the bottom of the bucket. Most migraine abortive medications---the class of drugs known as the triptains---are serotonin-like molecules. They stop the migraine by "resupplying" the brain and the blood with molecules that look like serotonin.

Well, that's not exactly true. The triptains stop part of the migraine, but not all of it. Migraine actually starts deep in the brain stem, and "consistent with previous work, the [brainstem] activation persisted after pain was controlled by sumatriptan," one of the triptains (S. K. Afridi1, M. S. Matharu, L. Lee, H. Kaube, K. J. Friston, R. S. J. Frackowiak and P. J. Goadsby, "A PET study exploring the laterality of brainstem activation in migraine using glyceryl trinitrate," Brain, Volume 128, Issue 4, pgs. 932-939). Meaning, the triptains can take the migraine pain away, but that doesn't mean they've taken the migraine away. Which is why a lot of people experience a "rebound" headache (not really a rebound, since it's the same headache!) once the triptain wears off.

[For some of the best articles on migraines out there, see:
PBS Need to Know: Migraine Headaches
Scientific America: Why Migraine Strikes
Science News: Head Agony
If you can understand those, you can understand migraine.]

It's completely normal to expect with all this wacky brain chemistry going off, that besides the pain, there's going to be an emotional component. (Pain, itself, provides its own emotional components, triggering "fight or flight" emotions such as aggression or apologizing.) There are going to be mood swings as there are brain chemical swings. And since all this also kicks off the autonomic nervous system by causing physical stress on the body, the migraineur's ability to handle external stress is taxed. Now add to this that some people's migraines have tripped over into lasting every day... Sometimes for decades (I'm looking at you Kerrie Smyres)... Then emotional stability becomes something of an Olympic sport!

So goes the strange behavior of migraines. It's like mini-bipolar with pain, nausea, and a host of other symptoms (including, sometimes, loss of language skills and balance). Fun times! @.@

So What Do We Do About It?

First, we have to practice detachment, and remember that feelings are not facts. Just because I feel up or down, doesn't necessarily mean anything more than a brain malfunction. I need to measure the situation against reality and see if things check out. And even if they do check out, that doesn't then mean I get to go running down the field with my emotions. It means I think about the best possible outcome for the situation and taking aim for that. Have I a right to be angry? Sometimes, absolutely! But that doesn't mean it's a good idea for me to get angry; that has negative, physical side effects, plus it clouds my vision to opportunities---they're harder to see when I'm angry and it's easier to slip into self-pity.

We've got to practice positive thinking, daily, to stay strong. I'm not talking Pollyanna-type, sun-shiney, sugary sweet, bullcrap. I'm talking real soul-searching, find the good in this (even if you have to dig a mile down for that diamond) type positive thinking. One: Remember that your suffering can be used to help other people with their suffering. Two: Recognize that you are a survivor, even though you were drafted and didn't have a choice in the matter. Three: Recognize that you are learning to manage something that no one would choose for themselves; this isn't extreme-sports, weekends-only heroics---this is the real deal. Four: We have a unique wisdom about the frailty of human bodies, human minds, human promises, human technologies, and human institutions; we can appreciate when things work, that much more. Five: We have a unique ability to be there for other people like us (there is an understanding---a kinship). These are just a few automatic wins. These are the thoughts we can repeat to ourselves in the dark times so that the suicidal depressions don't end up in suicide. These are some of the reasons we have value as human beings, despite being sick. We have these values as a result of being sick!

Next, we need to use these values to re-frame or thinking about ourselves. We aren't just patients, we're healers, too---healing the hearts of others like us. We're not alone in our suffering, though it may be lonely and isolating. We're diplomats, extending the welcome to others with conditions like ours. We're educators, informing the public of scientific, medical, and political matters. We're activists, raising awareness for people with our condition. We're researchers, spending countless hours on the internet looking up patient information. We're project managers, administrating the near full-time job of records, medications, symptom-tracking, billing, insurance claims, etc., etc. We may be a miserable pile of pain-ridden goo, but we are at the same time, absolutely amazing. Our diseases may limit what we can do, but it doesn't limit who we are.

It's easy for us to lose sight of our worth, especially when migraines are so crippling. So remind yourself of your value from time to time. Be kind and forgiving towards yourself, like you would a sick child. Comfort, but don't spoil. We must be careful today to make a good tomorrow. We must forgive ourselves when we fall short. We must try when we have the strength and rest when we do not. Additionally, don't think that you lose worth from being sick. Our disease is nothing to be ashamed of, period. I don't care if you have migraines from a self-induced head injury. No one says, "Race you to the first neurologist's visit!" It's not the mistakes we make, it's our recovery from them that counts. That we're walking the road of dealing with a chronic illness has merit in itself, regardless of source.

Practicing these thought exercises helps shore up our emotions, so when those big depressive storms come, we can remind ourselves of the good things, and hold on until the storm passes.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM "Day Dream Believer"

Today's blogging challenge for migraine awareness is: Describe your dream day, without a migraine to hold you back. Before we start, let me tell you that I hate this exercise. I don't want to think of how my life would be without migraines. All that's going to do is remind me how much my life is not how I want it. I can't be encouraging feelings of envy like that! I've got to deal with life how is is, not life how it isn't. And life how it is, is difficult enough!

I wanted to grow up, graduate from college, settle into a nice career, get married, have children and raise a family. A simple, accomplishable dream, right? Apparently that was too big of a dream for me. I was able to graduate from college, but I had to switch my major when in the middle of my sophomore year. My studies got interrupted by a ruptured cyst on my ovary. In my Junior year, I caught a series of sinus infections and flus that had me bedridden for months. The only thing that saved me from having to drop out was that I had switched to and English major that wasn't dependent on attending class every day. (My grade was determined by two papers---one at midterms and one at finals. That left a lot of time for me to baby myself and get through.)

I settled into a nice career: I was able to join my English major with a love of computers and become a technical writer. It made good money, and it included a lot of contract work, where I could take off time to raise a family, and not have my income hurt too badly when I decided to return to the workforce. Except that I started getting sicker and sicker. Getting to work from 9 to 5 was becoming impossible. I had companies who would allow me a flexible schedule, but I had to stop working when the migraine went to an every-day ordeal (despite all medical interventions).

I thought I had found a nice man to marry---my college sweetheart. Sure, things hadn't worked out when we were kids, but we were adults now with new perspectives. He'd become a responsible Navy man, like my father. I'd realized that I'd lost a good thing when I had it. We decided to get married, but that was also right when my illness made me unable to work. All our wedding plans got thrown into disarray. We ended up canceling the whole thing, because I just couldn't manage... anything. All of our money was going towards my medical bills, and we still weren't getting any answers. I didn't want to remember my marriage as the time I was sick, and we both thought I could get better. We figured it had to be soon. I'd already been through 9 months... surely a migraine couldn't go on longer than that! But we were wrong.

It soon became apparent that I wasn't getting better. The money was running out. I would need his insurance and income, so we ended up eloping. No white dress... no friends and family... we had to borrow our witnesses from the next camp over---strangers to us, who were going to attest that these two people should get married. Yeah... that should have been a sign. But I was too sick to really pay attention to any omens that didn't involve my own body. The marriage didn't last long, as he quickly discovered he didn't really mean the "in sickness" part of our vows.

I dealt with the divorce, and my lawyer mentions how it's a good thing I don't have kids. I knew he meant with my ex..., but I still had to fight back the tears because I was wrestling with the reality that I could never have kids. That was the one thing I had wanted since I was a little girl: I wanted to be a mom. But my disease was having none of it. We had tried for a year to get pregnant, and I never even got so much as a close call. Turns out that my body doesn't even know that's supposed to be a normal part of a girl's life. The tests later confirmed it.

So I have a really hard time trying to dream up a perfect day. I thought I was dreaming up a normal, pedestrian, average life. Nothing too grandiose... I didn't need trips to Paris and Rome. I just needed my little corner of the world and a family to love. Maybe that's where I went wrong. I didn't dream big enough! Maybe I should have wanted the most extravagant lifestyle with lots of money and power, and little responsibility. Perhaps then I would have been "saddled" with a simple life.

My dreams have to include my illness. When I think of a future me, I have to imagine that it includes my disease, and that I have somehow figured out how to manage it. I simply must include my limitations in my fantasies, otherwise I'm aiming for a part of the map I can never reach. (You can't get 'thar' from here!) If I want to be able to believe in my dreams, it has to take reality into account. Otherwise, I may as well dream I'm an elven princess in a Tolkien paradise, with a life span of thousands of years and nary an illness to worry my pretty heart.

If I want to be a "Day Dream Believer," I have to include the pain and suffering. But I can dream that I'm able to get through the pain and suffering, gracefully, nobly, and perhaps even joyfully---experiencing pain, but able to laugh with a free heart anyway, knowing that the pain will pass and life will soon be sweet again. Having friends and family around me who are fully supportive, helping me to rise above the pain and live life to the fullest despite it. That would be a perfect day, indeed.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#HAWMC - Book quote inspired post: I am a caveman

"[Your body] is an antique biological machine that evolved in response to a world that no longer exists." (The Time Paradox) Today's prompt is use a sentence from the nearest book as inspiration to write, free-form, for twenty minutes. (I cheated a little and went over on time, and didn't quite do free-form. But that's because I love this book, The Time Paradox, and I wanted to do it justice. It explains so much about how difficult it is for out little human minds to wrap around reality. My body's design hasn't really changed in the last 150,000 years. My environment, however, has changed drastically---largely due to our own efforts! My analog, caveman brain is in a digital, machine-driven world. Let the comedy begin.

For example, did you know that it's actually impossible to live in the present moment? That's simply true because our nervous systems lag behind what's actually going on. It takes time to see, hear, feel and process all those other wonderful senses---from 10 to 250 milliseconds, in fact. My organic brain is designed to anticipate, because that's the only way we can function in the world when we're always lagging behind. However, this is where everyone gets tripped up. What I anticipate is a story I've made up in my head, to try and predict the future, based on my past experiences. It's still a story. Reality is often painfully different. And if, say, I have an extremely traumatic past experience, that can cloud my judgement of the present moment, because I can now anticipate a terrible future that I didn't know existed before.

Further, I can become so wrapped up in avoiding that potential terrible future that I end up sabotaging myself in the present moment. In my anxiety and attempts to make sure that trauma never happens again, I can in fact create the very situation I'm trying to avoid. I anticipate that someone is going to be mad at me, so I get defensive. But then the person does get mad at me, but it's because I got defensive. They get confused because they don't think they've done anything to get me so worked up. And they're right! I'm jumping to conclusions and trying to anticipate moves. But in doing so, I force the situation to take a certain shape; a shape the other person may not want at all!

If I actually want to respond to the situation as it is, and not how I anticipate it to be, what I have to do is slow down, relax, and observe. My caveman brain is trained to look out for the tiger, find food, survive the elements, and maintain my place in my community/family group. I don't have to worry about predators like my caveman ancestor did. Finding food is as easy as going upstairs to my refrigerator. We don't just survive the elements anymore: we make fashion statements with our clothing. My community/family group is scattered across the country. Is it any wonder then, that I sometimes feel isolated, and adrift in a sea of strangers? Is it any wonder that I struggled a long time for a sense of purpose? Is it any wonder that I startle myself and see danger that isn't really there? No... But the awesome thing is when I change my perspective of a situation, I can change my response to that situation. Instead of making driving a competition with me and the other cars on the road, I can instead envision that we're all being carried on one big river, with different currents, and it doesn't matter if that guy gets in front of me. We're all part of the flow.

From an objective point of view, "bad" things are always going to happen in my life. I can't always avoid them. However, so far, I've been able to survive, despite it all. So I should give myself credit for being able to handle these situations as they arise, rather than always being on the defensive. I can do that with my doctors too. It's absolutely paramount that I treat each new doctor as new, and not a repeat of times past. Instead of anticipating for the bad experiences I've had, I can treat each doctor as a brand new opportunity for success. And by doing so, I'm being more fair to them, treating each doctor as an individual, rather than judging them as a group.

My caveman brain wants to make these associations to keep me safe from encountering the traumas of my past. But I'm a stranger to them. When I act defensive, I'm not giving my doctor a fair chance to do right by me. And I want to be as open and honest as possible. One, that helps them learn what's going on in my body more accurately. Two, it's the only way to build that all-important bond of trust. We may be all civilized and technologized, but human relationships still come down to primal rules that existed long before we built cities. Integrity still boils down to saying what you mean, and meaning what you say, backed up by proper action.

Like no other creature on this planet, we have changed our environment to better serve our needs. All animals change their environment to some extent, and a lot of animals do it with a purpose, just like us (building traps for prey, building shelter, nesting, etc.). But no other species has done it with such understanding of what we are going on about. We have taken the reigns of our fate as a species, and changed how we interact with the world. We live according to a clock, rather than the setting and rising of the sun. We are able to treat disease and strengthen fragile bodies that would not survive otherwise. But underneath it all, we're still just animals. We all have animal reactions, animal irrational behavior, and animal weaknesses. I have to remember that if I'm to successfully take responsibility for my life.

#HAWMC - I learned it the hard way...

"It's not the mistakes we make that matters.
It's out recovery from them that counts."
-Deng Xiaoping

Some of the beliefs we hold play a significant role in our lives today because we learned them the hard way. According to human nature, we will make mistakes throughout our lifetime. However, more important than the mistake itself is what we do when we realize we have stumbled. Sometimes, it is tough to address our slip-ups and move ahead. But it’s necessary in life. So for today’s prompt – what’s a lesson you learned the hard way?

I tell ya... some days it seems like I've learned everything the hard way. I never was someone to take anyone's advice---I wanted to sum up a situation myself and come to my own conclusions, thank you very much. I wasn't going to let anyone do my thinking for me. Of course this has led to many a situation where I walked away, more than a little embarrassed, going, "Oh... that's why they say that's a bad idea. Right! Totally got that now." But I still wouldn't trade a lot of my first-hand knowledge. There's learning you get from experience, that no amount of advice can teach.

Question is, is it worth the cost of learning it? The toothpaste can't be put back into the tube, once it's squeezed out. Some things cannot be undone. Some things cannot be unlearnt. There are always consequences, seen and unseen. There are quite a few things where I think... "Ooo... I really didn't need to make that mistake. Yie." But, ya know... it's the recovery from it that counts. Everyone makes mistakes. That's what makes us human. Machines are about perfect. I am not supposed to be a machine. Mistakes are going to happen. A lot. Little ones and big ones. So what? They're not important. What's important is to keep striving despite them.

I've learned the hard way how to read the signs of my symptoms, and how to manage those symptoms. There was no other way to learn but the hard way. They don't give classes on how to successfully manage a chronic illness. No one majors in "how to be sick." These were very personal life-lessons I had to learn on my own. No one else lives in my body but me. How do you teach a feeling? Yet it's in learning those feelings that I can predict what I need so that my disease-caused mistakes are fewer and farther between. I think after my work of 10 years, I'm starting to finally get a handle on how to manage this new, strange machinery, that is my messed-up body. We'll see.

Time will tell.

How to be happy being broken...

There is no way to insulate ourselves from mistakes. You can memorize everything, you can graduate magna cum laude, and get more degrees than a thermometer... You will still make mistakes. No one is immune. There is no vaccination. There is no pill to make you perfect. Stand up, and know that you are enough anyway. There is no formula for a perfect life. In fact, did you know that there are two types of happiness?! (You do, but you probably weren't even aware of it.) And most of how we go about happiness is all wrong. We go for happiness-in-the-moment, when we should be going for happiness-in-the-memory.

What's amazing (they've measured this), is that my happiness-in-the-moment can be greater, but it's my happiness-in-the-memory that is more important to my overall sense of well-being. That is, I can go through a terrible experience, but if I'm able to remember it in a positive way, it gives the whole experience a feeling of happiness. And it's this memory of happiness that is more important to how I rate my whole life as whether it's happy or not. Conversely, we can be happy for something in the moment, but if we don't remember it in a happy way, it can spoil the whole experience. We know this already. We have a phrases for it: "buyer's remorse." ... "the Honeymoon period" ... "it seemed like a good idea at the time." I can be absolutely thrilled in the moment, but if I remember it in a negative light, all that momentary joy is meaningless. And we can be enjoying and experience and having a grand old time, but if it's ruined at the last second, the whole experience gets ruined. We were happy for 99% of the event. But that 1%, because it was the last one percent, makes or breaks all of it.

Isn't it funny how our minds work? Here's the guy who did the science behind it:



There was a skiing trip that my family got to take one year where everything went wrong. Our plane was delayed by several hours so we didn't get on the ground until around midnight. We were all kids at the time, so we were exhausted. When we finally piled into the rental car, the first one wouldn't start. So we piled everything out, put it in the next rental car, only to discover once we'd left the lot (of course), that the gas gauge didn't work. Third rental car, and we're finally on our way, only to then go through so many other mistakes and injustices on the trip (the hot water heater in our unit self-destructed, the replacement unit they gave us the front door wouldn't close...) that it just got funny. It was so absurd, and so much went wrong that we ended up laughing about the whole thing by the end. It was something out of National Lampoon's Family Vacation. And even though it was the vacation from hell, we still laugh about it to this day. At the time we were miserable. We've been happy about it ever since.

I hold the power to be happy about all my memories, if I want. There are certainly some bad memories that should probably stay bad. Hot does still mean hot, and fire burns... But even if the experience was terrible, I don't have to remember the experience terribly. College was an awfully hard experience for me, constantly filled with stress, financial worry, poor health and near-constant performance anxiety. But I got through. And I can look back on that whole experience proudly, even if I was a wreck at the time. Same goes for my health experiences. They're awful to go through! But when I triumph on the other side, I can look back and be proud of myself for going through all that. I have very visible, bright, white scars on my face from battling MRSA (it nearly killed me). But I never hide those scars with make-up. You should know I went through battle. I'm proud I survived. The scars tell that tale.

I can even help write this story of happiness ahead of time. I can look at my life and imagine, "Now, when I look back on this time, what am I going to be grateful for?" Thinking of my life in those terms, I can set myself up for happiness in the future, and experience a taste of it now. For me, even though I'm desperately trying to get back to a "normal" life, I am going to look back on this time and be grateful for all the research I was able to do. I've had the opportunity to let my curiosity wander and chase after what it finds fascinating, and I have found some amazing things (including the video above). Since I now know the memory is more important than the experience, I can see my life for how I will remember it, and then the experience of it isn't so difficult. Right now, this moment can be broken all it wants, if I can remember it happily, that's what counts. I can be broken in many ways, but if I remember me happily, that's what matters.

How are you going to remember your today, tomorrow?

Visualizing a Future You

One of the biggest problems I've had in dealing with my chronic illness and its limitations, is seeing myself as someone I can admire. There were certain preconceived notions I had of where I would be at 38, and my vision was no where near where I actually ended up. Some things I dreamed of---having children from my own body---are impossible for me. It's really easy to look at my life and see how much I've lost. But that kind of thinking gets me nowhere: it's focusing on the negative rather than the positive. If you don't like where you are now, picture a future you that you can live with, and aim for that. Then current circumstances are only temporary hurdles on the road to a greater destination. The easiest way to do that is to visualize who I am to be in the future.

When I do this visualization process, I first think of how I want to feel. This woman that I am to become... how does she feel inside? More confidant? Calmer? Happier? More content? More patient? A little more cynical? More outgoing, more reserved, or a little of both? I make sure that the qualities of this future me are qualities I can live with. If she's not happy, I throw that visualization away and find a new one. There's no use imagining a future me that's miserable. This is supposed to be an exercise about where I want to go with my life. Aiming for unhappiness is not that! And our visualization process is exactly that: Aiming ourselves towards a better, future us.

After I get the feelings down, then it's usually easy to picture what she looks like: longer hair (because I'm growing mine out), a few more lines and grey hairs (but I don't mind), quick to laugh, but mostly quieter than I am now; more watchful. I picture her in more business attire. Somehow she's figured out how to get some income going again and I've got new suits to show for it. I don't know how she's done it, but don't have to know all the details! That's part of the fun... Figuring out how to make this stuff true!

Once I can picture her, I can start listing off the reasons why she is the woman who she is. I know what she does for a living gives her a great sense of purpose. I can see that life has been difficult during the last 10 years, and I don't know what she's been through, but that the trials have made her stronger. I see her working in her new chosen field, and being recognized for her efforts. I see her smiling at the praise, but with humility because she knows the journey was that of a thousand steps. She's been able to make new connections in life and new friends with this line of work. I see her in a convention hall as part of the event organization staff, the applause leaking in from the dining hall, for whomever is speaker at the dinner that evening. When I picture it, the event is important enough to be a cloth-napkin affair, and that thought makes me smile.

I imagine her in her off-time, too. She's enjoying hobbies that I like, but didn't bother with before, because I was too busy doing more physical things that are now out of my reach. She's physically active (so that I aim away from being a couch potato), but in a more disciplined, mature way. Her exercise is Tai Chi in the quiet hours around sunrise, not dancing at the clubs to ear-splitting music until 2am. She's quieter than I ever dreamed of being, because it's never something I wanted, more it was thrust upon me by my disease. But I can picture it a sophisticated quiet, rather than quiet from boredom or humdrum. There is plenty of excitement to be had on the intellectual level that doesn't require zooming about physically as well. There are plenty of adventures of the mind that don't require extreme sports for their thrills.

When I do this visualization process, and I'm able to come up with a future me that excites me, then I really have something to live for: myself! Whenever I start to feel discouraged, I can sit and think about her, my future self, and think about what I need to do to get me there. I make sure to never visualize myself as healthier. That's dangerous---it's a set-up for disappointment should something bad happen. Instead, I make sure I visualize her as broken as I am now, if not moreso. But, to keep myself from despairing over that fact, I envision her as fully capable of handling whatever it is she has going on. That starts me thinking along the lines of problem-solving rather than just problem-despairing. I look at her life (which is not an impossible goal) and wonder, "Okay, now how did she get there?" When that happens, I start thinking about options and opportunities, rather then obstacles.

What's amazing to me is when I have a future I can look forward to living, I start automatically doing a lot of self-care activities. One big things I notice is that I'm a lot better about taking care of things that have no real pay-off now, but will have huge pay-off in the long run. My teeth are especially easier to take care of: I want my future me to have good teeth she can enjoy (I don't picture dentures for my future me), so I feel a real incentive to be responsible now. I also get a lot better with my money: I'm able to say to myself, "No, we can't make that impulse buy, even though we want to. We've got plans, and those come first." It's easier to make small sacrifices now, even though my self-pity/inner child wants the quick emotional fix of a right-now purchase (even for something as small as a box of Tic Tacs). When I know I'm working towards a goal, it becomes easier for me to defer gratification. Yes, I want the Tic Tacs now. But that satisfaction will fade quicker than the orange, sugary, candy after-taste. If we want real, lasting satisfaction, let's go for this bigger, long-term goal, instead... Self-talk like this helps me enhance my patience with my desires-of-the-moment, and choose actions that are more beneficial overall.

Try it for yourself, and see what happens! 1) Picture a future you that you like and admire, who successfully lives with your disease. What do they look like? How are they different from you now? 2) Imagine what it feels like to be that person. What does it feel like when they laugh? What do they feel like when they've see a long, lost friend? How do they feel physically when they run across something that melts their heart? 3) Visualize them moving through their life. What do you see them doing? What do they do in their off-time? Given your current limitations, what have they figured out to do to get past them or make peace with them? 4) Ask yourself, is this someone I want to become? If not, revisualize your future self until you can answer: Yes. 5) Figure out how to get from here to there.

Good luck, and happy daydreaming!!

When the cards are stacked against you... Reshuffle

I have heard people say time and time again that they don't know how I do it. "That is entirely too much for a person to handle!" I've had one say. And yet to me... I can't give it any credit. When I get taken over by these dire health moments, it's luck and instinct. It has nothing to do with me. I'm just holding on! I'm not clever or wonderful in these moments. I'm just a living organism desperate to keep living. I believe every one of you would do just as well, if not better, in my shoes. You'd get the job done, and probably with less whining and kibitzing! I honestly wish I could shut up about all of this and just live life, but I've been unable to do so. Instead I've turned it into a blog so I can fake that all my complaining is respectable. Funny thing is, I accidently found a way to make it successful. (Sometimes it seems the only way I find success is to trip over it.)

I started this blog because I was miserable. In my mind, I was a wretched thing like something out of a Dickens nightmare. I was huddled in the darkness, alone and doomed. Then the other part of my mind kicked in. This part of my mind was more like the Ghost of Christmas Present, gentle and joyful. She laid a hand on that wretched child's shoulder and said, "Now see here... You know you're not the only one going through this and you know you don't have it as bad as you could. If you want to learn how to do something yourself, try teaching it to someone else, remember? Now think... if you wanted to teach someone else how to get through this, how would you do it?" And like a dawn breaking, suddenly I wasn't in the darkness. I was in a lecture hall. I wasn't dressed in rags anymore, I was in a nice wool suit. And I also wasn't a child... I was an adult, standing tall.

The lecture hall I had in mind was very specific. It was the lecture halls I had when I was a science major at Saint Louis University. There, the seats slope downwards like in a theater, to accommodate class sizes of 300 students. But more importantly in my mind, I'd be lecturing from a point where the students look down at me. Yes, I'm the one lecturing. But I must always remember to present my teachings as a gift or an offering. Because in the end, it's not my lecture that's important. It's what the students can make from it that is.

Suddenly, everything I'd suffered was of value. These weren't just things I had to go through in my life. These were now things that I could use to help make someone else's life better. It wasn't just my loss. It was someone else's gain. And then too, my inability to shut up about it suddenly became a boon. It was no longer embarrassing that I was an unabashed exhibitionist, ready to share the details of my personal life with strangers. Now, I'm an activist, inspiring others to share their experience, strength and hope as well!

How the heck did that happen?

One thing I will give myself credit for is that I refuse to surrender. Sometimes, that's a terrible trait to have, especially when someone wants to be left alone! But like the title of this entry (given to me by my lovely cousin, Jeremy Diakonov-Curtis), I've decided to reshuffle the deck. The things that give me trouble I will use to make some good. The things I am terrible at, I will admit, so that others can know they're not alone. Like any human being, I have my weak moments. And like most people, I underestimate my own abilities and don't give myself enough credit.

It's difficult to be kind to myself in a world where I have trouble fitting in and keeping up. My random yelps of pain and discomfort are disturbing to people. That's not an unnatural response. And I feel guilty when I cause that discomfort in others. It would be as if I had picked my nose at the table. Not good! If you invite someone somewhere twenty times and it's "no" every time, pretty soon, you just stop inviting. It doesn't matter that the 21^st time would have been "yes." So I push myself to go out sometimes, when I know I shouldn't, because I want to keep getting invitations. It's these little, simple things that I fail at, that weigh so heavily on my soul.

Because from the outside, I know you can't tell the difference. I look fine. Stunning, even, sometimes. I don't look like there's all this going on in my life. There's no way to tell that I'm not just irresponsible and lazy. With other sick people, they know immediately. There are experiences that can't be explained, but you can tell by the way they talk and act that they've actually been there. There's a knowing. You can see the dark wisdom in their eyes. It's like a "you had to be there" conversation. Do you get the... And then the... Oh! And sometimes.... And have you ever?.. It's like meeting another member of a fan club, only it's a fandom that no one wants to be a part of!

This illness has made me into someone that I don't like, and that I have trouble admiring. I wanted to take a dream opportunity of being a live-in nanny for a friend of mine and her two wonderful daughters, and I just can't. I'm lucky for the time I can spend with them. I am in no way, that level of reliable, yet---to be able to care for children. It breaks my heart. I don't get to be the woman I want to be. I only get to be the woman I can be. I'm going to have to let what I want, go. I'm going to have to figure out how to be a woman I can be proud of, anyway. And like before, it's going to take seeing my situation in a new way.

So I've got to reshuffle. I've got to change things up to make things work. I can't judge my life now based on how I used to be able to live it. That's just not fair. But, in a way, I don't know that is fair. In a way, the only one who can determine whether I'm actually living up to my potential is me. And I'm not always good at being honest with myself.

That leaves me with only one answer.

FORGIVENESS

I'm going to have to allow myself a lot of mistakes. I'm going to have to eat crow, and worms, and bite some bullets. I'm just going to have to be okay with the fact that I suck sometimes. Sometimes you're an all-powerful wizard. Sometimes you're just a guy in a funny hat. But I've done this before, when I didn't even intend to. I've been able to turn my situation around and find the good in it, even with everything it threw at me. I stopped worrying about me, and started worrying about other people. Now that I've changed my focus, I'm not alone... Now, the fight isn't just about me... Now, I have the courage to stand up and lead the charge again...

Deal the cards. Let's play...