Life is a Double-Edged Sword

Now that I'm the age equivalent of the answer to "life, the Universe, and everything," I'm hoping to grow in wisdom. For my birthday, I "celebrated" with a double dose of ER visits. It wasn't my best birthday, but then I've had worse too. I've been on this earth long enough to have a number of educated complaints, but I can also have a sense of humor about it too. That's the way it is with law, which a lot of people don't realize. Words are a double-edged sword. They can cut, and they can heal. Medicine is a double-edged sword: it can hurt or or can harm. Information too: your data can be used to redeem you, and it can be used to bury you. It just depends on which side of the sword you're on: the cutting edge, or the flat of the blade.

Stories are like that. Who you're cheering for really agrees to the side with whom you most identify. We all can skip over the bits we don't like, or are too boring for us, and find the plot which interests us. It's a field of study called semiotics, a part of language that acts as signs and symbols we can all follow like a roadmap. But the direction they take us is not necessarily where we think we're going.

I had a great exchange with the doctors yesterday. I know I can get combative with doctora. It's not something I do on purpose. Hurt, confusion and fear easily lead to anger. They can also lead to submission. It just depends on what sogns we see in other people's language as to which road we end up on. I had a moment when I didn't understand what the doctor was telling me. I had a feeling she was not as well informed about endocrine issues like I had. Whether or not I was right really doesn't matter. She was seeing a pattern that I couldn't see, and in it there was something that worried her. She was able to explain it to me, and suddenly, I relaxed. Yeah, it meant getting a spinal tap on my birthday, but at least I was in the clear for meningitis!

On my way out I ran into a man who had been thrown out by the doctors from the hospital (contrary to popular belief, they can throw you out or keep you as long as possible at an ER, the only recourse is medical malpractice, if you live, can afford the attornies, and win your case). He was hostile, and the people there didn't understand his difficulties were not because he was messed up or drug seeking, he was still recovering from a stroke. But piss the staff off or anyone else, and they'll throw you out as equally skillfully as they will treat you.

So yeah, they doctor hit a nerve in my spine, but it wasn't as bad as the first spinal tap I had where the poor student really jabbed me, and the doctors didn't bother to tell me to take it easy afterwards. Apparently I have tough skin, too, probably a side effect from my Sjogren's, but at this point who can say if it isn't from the nerve damage in my skin too? Sometimes my Sjogren's is in remission and I sweat like normal. Other times I don't and save money on underarm products.

It's the same way with medication. It can heal, cause harm, or get you high. Truthfully, the drug doesn't care which it is. Crestor can save lives, or it can cause paralysis. Marijuana can get you high, hungry, and horney, ot it can take away pain, instill joy, boost proper immune and endocrine response, and heal PTSD. It can make you forget, or it can help you remember. Any medicine can do that. Any medical prodecude can do that. Is having a permanent condition bad? Sure. But not so bad if you consider the alternative was dying.

In Iceland there's a saying: it's not the drugs who make the addict, it's the need to escape. What's the difference beetween a food addiction and drug addiction? You can't quit eating food. But then it's just as dangerous to avoid all drugs. Christian Scientists have a huge problem with early mortality for that reason. Heck, you can get a prescription for oxygen, and that stuff is free in the air! Oxygen is a drug that causes euphoria. But you don't want to quit breathing just like you don't want to quit eating, just like drugs can be helpful, harmful, and fun all at the same time. Life is a double-edged sword that way.

More Than One Right Answer

I was asked the other day how I keep my faith (in a God of my understanding) when I've had so much happen to me. A friend was trying to play the "Have you tried" game with my migraines. I gave her a few tries & then I explained, in order to be considered a candidate for the experimental ONS device, it had to be show that I had vigorously tried every available option in 2007 and have it fail. I was among a handful of people arcoss the country allowed in. And that's when she asked me, how do I still have faith?"

It reminded me of a time when I must have been four, and the whole family was playing a game of I-Spy. We would get the color, and the first letter of the name of the object, and then we had to find the thing my parents had in mind. They had said, "Red, B!" And I had come up with "Red Ball," which was a piece of a toy I had, not the whole object, but I figured it was close enough. My answer surprised my parents, and they had to admit, yes, I was just as right even though I hadn't found their answer.

There are more right answers out in the world than are available to me. When I was a part of that study, it was one of those miracles of luck where all the right people are in the right place. Oh, that doesn't exclude one really bad apple from being in the mix, and in charge... But still personal miracles can happen despite even rotten folk.

There is so much more going on out there than any of us are aware of, good work by amazing people who are changing the world and even they can't know the true future impact of what they do. Even though I still struggle with disabling conditions, there is progress going on everywhere, progress in me that I cannot see yet, progress in the world around me that I haven't met yet.

The same is true for you. As long as you can hang in there in the best spirits possible, that gives you a chance to meet those opportunities. I know that sometimes my biggest foe is my own doubt, and that I have to have faith that whether or not I get better, that life on the whole can get better, giving me more encouragement to fight the good fight. There will still be times when I'm knocked down and question, but if I'm honest I question success too, so who am I to judge?

Dealing with chronic pain is soul-stealing, of that there is no doubt. Pain robs us of quality of life and robs us the ability to participate in Life. It's the latter which is the most damaging because participating in Life is what allows our souls to grow and overcome those stolen pieces. Even if we must suffer in a tortured body we cannot escape, the beauty and awe of life can be a balm against pain. Connecting with others and being part of a group can invigorate more than any elixer.

The longer I live, the more I see how limited even my imagination is. I may think there's only one right answer for my life, and I have to have that right answer or I'm doomed. Yet the more I see and discover over time, the more I find there are several right answers out there. More than I know. More than my doctors know. More than any of us know...

And in that space of the unknown lies all possibility for you and me. You can have faith in that.

Zen & the Art of Chronic Illness

One way to learn how to "Live in the Now," is to get a chronic illness. I realized this after I called a friend of mine and invited him to come over. I had spent the night before in the ER for a kidney stone, and when he showed up I asked him, "So, what do you want to do?" He laughed. "Do? Woman, you're still wearing your ER bracelets and you're asking me what we should do? How about you REST?" The though never occured to me. I was okay NOW. Why did I need to rest? And that's when it hit me. It didn't matter what happened last night. That was last night. This was now. My chronic illness made me a better Buddhist than decades of awareness training. Who knew! LOL

And if I'm completely honest, my chronic illness has made me powerful in ways I never thought possible. All those ideals that i thought were so lofty when I was healthy, ("don't sweat the small stuff, and it's all small stuff," "don't worry about what hasn't happened, let go of what has," "first things first," "but for the grace of God, there go I...") are now regular habits and 2nd nature to me. I couldn't believe it, but here was my friend laughing at me, because I just had.

I thought that my life and my growth had been interrupted, and that I had become stagnant, trapped at an age below my peers. I thought that because my dreams of achievement had been put on hold, I had been put on hold. I thought that because my resume wasn't listing any new skills, I wasn't learning anything new or adding to my mastery of any subjects. I thought that life was passing me by, and that meant I was no longer a part of life. I thought that I had "nothing to show for" the time that had passed. I thought that because I wasn't climbing the social ladder, that I wasn't going anywhere.

Boy, was I wrong.

In fact, my disability allowed me to do what most people wish they could do, but can't! Normal folks have to turn to monastic living to achieve the separation from "the pressures of the world." I'd been given a golden ticket on a wild ride through horrors and wonders, tackling some of the scariest topics in life: what does it feel like to be dying? what's the worst pain I can endure and survive? do I know how to come back after a devastating blow? can I put my life back together if it all falls apart? can I tell when something is seriously wrong? do I know how to ask for help before it's catastrophic & beyond my control? can I swallow my pride/fear/righteous anger/shame, and do what needs to be done? can I man up in the worst of circumstances? can I take care of myself as I grow older and start to lose my faculties? do I have what it takes? can I keep myself safe?

I have answered those questions and multiple times. My ability to bounce back happens the moment I am physically able. I know I can trust how I feel and report it accurately and fairly. I don't respond to how I imagine things to be in my body, I react to how they are. I've had several examples of this, but one big ones stands out: I have no startle response when strangers touch me, or of I'm touched unexpectedly.

You know the kid's game: come up behind someone and tap them on the shoulder opposite of the side you're standing on, and watch them jump to see who did that? I've had strangers come up behind me and put their arm around my waist when I wasn't expecting it, and not only did I respond like I knew it was going to happen, but I let them move me to the side as though we were dance partners. What it actually was, was a bartender moving me out of the path he needed to take, but I couldn't know that from the back of my head. (There was also no alcohol involved!) It didn't feel like a stranger had grabbed my waist from behind. It felt like my husband had put his arm around me, it was that comfortable. I've had the same experience when struck by inanimate objects. I just don't startle easily anymore. It's amazing what it takes to make me jump. I've achieved a level of bravery I didn't know was possible.

Life didn't pass me by... I was learning lessons most people have to wait their entire lives to learn. I was being given such a deep understanding of the principles most spiritual practices hold dear they became part of my nature. My disease has been a spiritual guide through some of the most advanced topics in life. What I once feared and anguished over no longer troubles me. I intuitively know how to handle situations which used to baffle me. And even though I was removed from the normal path of life, I see how even my experiences can benefit others.

In my last year of college, I started freaking out. I didn't know what to do with myself or what my life's purpose was. I even went so far as to go to a counselor to try and figure these things out. For the longest time, I thought my purpose was to be a mother and help nurture a new life into this world, passing on the lessons I had learned. That dream will probably never come true for me. But in its place, a much larger life's purpose has grown: to serve the community of those suffering in illness and disease, and those who are dying or who long to die. Most people are terrified of saying something wrong when someone they know falls ill or starts talking about depression or suicidal thoughts. A lot more people freak out or run away completely. Not me. I'm just fine tackling those issues.

And as my friend's laugh reminded me, I thoroughly live "in The Now." Without even trying, I have found that present-moment focus that monks study for years to achieve. I am not attached to what just happened. I let go of the moment once it has passed and allow it fall from my sight, just like the autumn leaves fall to the ground and are carried away by the wind. What's past is what's past, what's now is now, and this present moment (and my current abilities in it) is all that matters.

Wow! Who knew?

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"

My Most Fortunate Mistakes

I have done some doozies in my time, let me tell you!! But some of the things I have kicked myself for, repeatedly, have turned out to be exactly the right thing to do, and have saved my @$$ in the long run... I thought that losing Seattle was a mistake, that I was leaving my home... And I was. But that move allowed me the key piece of information that I needed to take better care of myself: that dry air does me better. That allowed me a larger window in which to function, and ultimately got me to the better place I am today.

I have "chronic foot-in-mouth disease," but that opened the doorway to a whole set of new friends I never knew I could have. I though once I had lost the love of my life, and it turned out I dodged a bullet! I mean, there are some crazy twist and turns in life that I never thought could happen, good and bad, but I'll tell you something that has always helped me was a healthy sense of how lucky I am.

Oh sure, I've wine the health lottery in all the wrong ways, but I still have a mind. I still have enough good in my life to build success. I am super high maintenance, but in the most low maintenance way. Really, it is stupidly easy to make me happy. If I could be self-sufficient, the world would be right in so many ways. It's important that I keep the faith until it works out.

Funny thing is, about giving up.... That doesn't mean that you can't start again. All of us get knocked in the dirt a while. It's not about that. It's about making the right decisions, and sticking by the beliefs that make you, you... Not matter what darkness in your life may fall. Be responsible, and the world will reward you. Hang in there, keep trying, and even the mistakes we make can end up being a blessing in disguise.

If we just though about it for ten seconds, we'd realize that the problems we had ten years ago are not the same as the problems we have today. Some have gotten worse, but some have gotten better, and there is something to be thankful for if we think about it long enough.

We are constantly evolving creatures. Heavy weights that used to hang on my heart have been lifted. Not because of any sort of spiritual experience, but just because I got new information that changed my perspective on everything. What I once though was a terrifying experience, I later learned was an act of bravery. Little things, where I though I had failed, but I hadn't. Things aren't always how I see them to be. And that can have terrible consequences, or wonderful ones. And what we think is terrible turns into wonderful and vice versa.

Things change. We change. My concerns at 30 we're not the same as they are at 40, and certainly not the worries I had when I was 20! I *am* getting better and wiser with each stride, even the missteps... Especially the missteps. Because it is only when we are in free-fall, sure that our ass is about to kiss the pavement any second now and we have two choices. The correct choice is NOT "brace for impact." That will leave you stiff, and bones will break. The trick is: RELAX.

Yes, I know unintended free-fall is terrifying. I know you want to reach out in desperation to catch yourself, but that can cause more damage than just a fall would, if what we grab for is sharp, hard, or unfit to support our weight. It's terrifying to realize the pain of impact is coming. We want to save ourselves from that fate. We want to cling to something that can save us, and can pull down our lives around our ears as a result. (Or worse, other people...) But as long as we try to resist the situation, we're concentrating on denial, instead of learning acceptance.

First, if I relax, I have less chance of injuring myself or others. Second, if I relax, instead of trying to say "this isn't happening!!!" I can instead say, "this is happening, what's my best option?" And sometimes in these terrifying moments, if we can relax, we can see that key insight we need to save our butt from the fire. A lot of times, I can tap into my dancing muscle memory and use my momentum to collapse on the couch instead of the counter, and I count my lucky stars. Other times, I just need to relax through the landing, and hope I don't hurt myself too bad. Still other times, I can think it's free-fall, but it's an illusion, and I'm really on solid ground, not falling at all.


-- Relax. When you know you're going to be reunited with the Laws of Physics in a harsh way, relax.
-- Look on the bright side. When everything is at it's darkest, that's when a candle shines as bright as the sun.
-- Realize that time changes things, and our biggest worries can turn around in an instant with just a piece of information we didn't have before.
-- Forgive yourself your mistakes, and realize that not all mistakes turn out like we think. Life is full of so many surprises, and we could be completely incorrect about what we though we did wrong.
-- Be true to people. This world is hard, and fairness something rarely seen. We should be good for the sake of goodness, because there's not enough in the world.

I'm so grateful for these mistakes... Sometimes it is wonderful to be wrong.

Outlasting the Crash

You'd think after 11 years I'd handle these #rises & #falls better, but I'd be lying if I told you that my depression two days ago didn't feel exactly like my depression in 2005, when I would cry myself to sleep in my shower. Isn't that funny? After all this time, and all my accomplishments, none of that matters when the symptoms take hold and send me spiraling through that same old routine.

In a way, though, it's freeing. If each time it happens it's the same no matter what's going on in my life, then it can't have anything to do with me personally! Let me say that again: if my soul-crushing depression is the same today as it was seven years ago, that means those feelings are the disease, and have nothing to do with me. I've changed a lot in the last seven years, and made amazing strides. My disease has progressed, but not in such a way to overwhelm me completely. I'm not dealing with a sudden blindness or the loss of a limb that would turn my whole world on it's head. Nothing so dramatic. So if the depression is the same, "ALL IS DOOM!!" feelings, it stands to reason the two are NOT connected!

This is why the friends who know me know to take these phases with a grain of salt, comfort me as best they can, remind me of the reality of things in a calm, non-judging way... But pretty much we all just have to wait until the storm has passed and I get to be me again. That can take days, and depending on the season, weeks. Spring and the Summer rains here are the hardest for me. When the barometer goes on a roller coaster ride, so do I. (This being Colorado, by Spring rain, I of course mean snow.)

I wish I could be a courageous leader all the time. I wish I could always rally the flag. I wish I could always be the light in the darkness for others, and not get afraid of the dark myself. (There's something moving out there!!! Oh, wait. It's me. I'm caught on the blankets.) But then of course I have to remember, I wasn't born a machine, nor was my intended purpose to be one. "I make mistakes, therefore I am..." -St. Augustine (Hippo) (Hey, if a saint can do no better, what do I expect?!)

Now that I have survived the low part of the crash, I'm starting to feel hopeful again. I have a lot of "homework" and research to do, but the Independent Living Center I'm working with now makes me feel a lot less afraid. I don't think I'm quite at the level where I can participate in the Plan to Achieve Self-Support just yet (I still have yet to meet with a kidney doctor to know what I can expect of my new diagnosis, but it's on the calendar). In the meantime, however, we may be able to find me something where I can at least afford where I'm living now, and be able to buy my food and medication at the same time! Dream big! Lol

In truth, I do still have big dreams, and I hope to accomplish those too. It's just going to take more creative thinking to accomplish that; that is, it's not as simple or easy as I first thought it was when I dreamed of this...

But then, is anything?

#Pushing #Limits

One week ago I set out with one goal: to safely push my limits and see how much I could accomplish with my body. I set a few ground rules: While attempting this I would baby my body. That meant lights out at sunset, and allowing myself two sleeps per night. I was eating no meat, taking my vitamins + extra potassium daily, and limiting my caffeine intake to half an energy drink per day (I like the ones with the B complex, they help my migraines). I discovered some interesting things.

1) It is really difficult and time consuming to baby myself, but it is possible when the weather cooperates. (There were days I still needed my breakthrough medications and needed to lay low, but I was able to work through low level migraines and use exercise to keep the small ones at bay. This was extremely exciting to find out, and equally so, that I could wind myself down in such a way that I experienced few rebounds. The rebounds I did experience were doozies, though, but I prefer getting stuff done any day. My garden looks amazing and is ready for Spring!

2) The new diet is working! Almost started working a little too well there, I forget how dehydrating Sjogren's is when I have to take certain medicines! But I know know what I need to eat depending on what my body tells me. I have finally (hopefully) figured that part out! (*knock on wood!*)

3) Pain & nausea are managed with medication! I feel confident with the plan my doctors have for me here.

4) Chronic fatigue is NOT managed. I was falling asleep in Church. Not good! I'm going to have to do more research on the kidney front about this. Hopefully there's something more I can do diet or medication-wise (hopefully the former before the latter).

5) Though my body can be babied, that can quickly lead to overconfidence in my abilities. I hosted a friend's party, and then tried to also go to coffee the next day. I discovered that my maintenance program doesn't work so well among company, and was quickly drained to a point beyond my liking. I paid for it in spades!

6) I have reached out to one of the resources listed on the ticket to work page... *knock on wood* Hopefully things will go well and I can earn a little to keep the wolves at bay!

It's a scary time being in a position like this... Too many healthy people are hurting which means the sick and the desperate really get less. I hopefully can find some way of working from home to make enough to get by if I'm frugal & carful.

I'd be lying if I said I wasn't scared though.

Why comedy?

When I was younger, all I ever wanted to be was cute & funny. When I was sick, any time I could laugh was another reason to live. The situation was never so bad that I couldn't laugh at it. Anytime I was overwhelmed at work, I knew all I had to do was wait. Pretty soon things would get so absurd that I couldn't help but laugh. It helped me cope with my pain and helped others cope with my pain, too. Nothing was ever so terrible that wasn't also funny.

So when I heard this comedian just come out on stage and announce, "Good evening, I have caner! How are you. I have cancer. Great to be here. Cancer!" and everyone laughed and applauded, I was floored. This was new. I have lost friends and family over my illness, ruined a marriage, imploded my career, left me childless, homeless, hopeless... and here she was parading it on stage and people loved it?!? Sign me up!

I seriously can't wait. I know the adrenaline is going to make me sicker than a dog, and the second I get off stage I'm going to need an emergency shot, but WOW. If I can make all of this funny, the nights hugging the toilet praying for death, the terror when death agreed to take you up on the offer, the humiliation and shame about wanting to die and not wanting to die at the same time... you mean... that's funny? That's not a drawback but an asset??? You mean the worse my life gets the more it's comedy gold?

I'm RICH!!!!!!

I just found an effing winning lottery ticket for billions. If tragedy + time = comedy, I've got both in spades. I could start this tonight!

But I also know that it's going to be brutal and ruthless and I am a frail and delicate flower. But it can't be any worse than what I've already been through! I know my disease is going to kill me and cause horrendous pain. How much worse could it be to shine a spotlight on it? It's not like I've been shy....

So I'm really looking forward to this. Be sure to stay tunes for the launch of Denver's new Comedy Production Company, Gräfenberg Productions. We're going to put Denver on the map!!!

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.

My Secret Triumph

I've read a lot of posts in online communities for people who have chronic health issues. One common complaint I hear is how other people don't understand how hard it is for us to do even the most simple things. In their frustration at their loss of ability, they feel sorry for themselves. I've been there. I've done the moping. I totally understand. Getting a chronic illness sucks! But there's a way to flip that around. There's a way whereby we can look at our struggle over easy daily tasks and we can realize that we are MIGHTY. By the very fact that it is more difficult for us, we can then take pride in doing even the most mundane things. It's all a matter of perspective.

And that's my secret triumph. Most people have to go out and run marathons, or hike a 14,000' mountain to do a great thing. I just have to get the laundry done (now there's a Herculean task!). People don't understand how difficult that can be. Which is fine with me. I can take pride in it myself, knowing that I have been stunningly awesome every time I can get that simple task done. Oh, sure, for them it's easy. But then, they have an easy life without chronic illness. That's no big deal for them. It is for me... and for that reason, I can have an amazing amount of pride in myself, just for getting through my day.

I don't have to write the next great American novel. I don't have to conquer the elements in some great quest. I don't have to discover the cure for the common cold (beer) or find the cure for cancer (cannabinoids). I just have to wake up in the morning and take my pills on time. Right then, I've already saved a life for the day: my own! Everything after that is gravy.

If I am able to achieve some semblance of "normal," then that's incredible. I have to obey a lot of very strict rules, and do some really crazy things in order to reach normal. I have to get 11 hours of sleep on work nights (plus Friday, because I'm usually at my rope's end by then). That means going to bed at 7:30, so I can be up at 6:30 in time for work. It takes me two and a half hours to get ready in the morning, because I first have to get all my medications in my system and get them properly digested before I can do anything else. After they kick in and start working (usually an hour before I notice the effect) then I can get started on my day like a normal person (get dressed, brush my teeth, etc.). By the time I'm driving to work, I've already accomplished a miracle! My day hasn't even started, and already it's amazing.

Then, every day that I'm able to come to work and have people think that I'm normal just like them... that's another miracle. I'm able to manage my symptoms through my day so that they're largely invisible to everyone else. I'm able to complete my work, and no one else is wise to the fact that I'm fighting to keep this up. I'm fighting... and I'm winning. Every day is a struggle, and every day, I work to make it seem like it isn't there at all. My success depends on no one else knowing how hard it is, as though it's no bother at all.

My self esteem comes from my ability to make my problems no problem. It's a lot of work!!! And each and every day I can be proud of myself for my efforts. No one else knows how much I struggle, and I like it that way. The less they know about my disease, the more successful I am. Like the graceful swan who is gliding on the surface and paddling like crazy beneath the water, so too do I make all this struggle look effortlessly beautiful. That's my secret triumph: I make this look awesome.

So, rather than feel sorry for ourselves for all the extra things we have to go through each and every day (not to mention the crazy drama that pops up as a matter of course), my suggestion is take all of that anger and turn it into pride. Yes, it's difficult to the point of tears. But if you can manage it, and do so without the tears, well then, look at how mighty you are! If you can put up with hellfire and brimstone, and do it with a smile and a cheerful attitude, there's no better way to cheat the devil. Be proud of every little thing you can do, because these diseases want to make it so we can't. Hold your head high, just for the fact that you endure. That alone is mighty enough.

But I don't look sick? Thanks! I work very hard to keep it that way. ;)

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.

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.

Nervous working...

I know my co-workers probably think that I'm lazy. I don't roll into work until 9:30 sometimes. I take flex days where I work 4-day weeks or half-days sometimes. But what they don't know is my mornings are explosive sometimes. I may roll in at 9:30, but I've been up since 6am. I've just been trying to get myself right so I can handle my workday.

I have to take pills to keep me alive. These must be taken in the morning. I wake with nausea, every day (part of the nerve damage). I still have to keep the pills down. So first, the nausea must be managed, and there's no telling how long that's going to take. It could be fifteen minutes... It could be an hour. Or two. I've learned to wake up early and give myself a lot of wiggle room. Right now, I'm taking time out---every few minutes writing a few words---as I try to manage this migraine that decided to upset plans this morning. Oh yes, beyond the usual monkey wrench, there's also the occasional uber-monkey-wrench. There is no negotiating with a disease.

So I have to start waking up earlier and going to bed earlier. I've made a new resolution to go to bed at 8:30pm and asleep by nine, so that I can wake up comfortably after a solid night's sleep at 5:00 in the morning. That should give me enough time to wrestle with my illness and still make it into work at a decent hour.

Today, however, is not that day! lol (*ow* migraine!)

I'm just glad that my work is solid enough that they're willing to be flexible with me. I am very fortunate, and very grateful. It was this flexibility that allowed me to work, even while technically disabled, before the Great Migraine incapacitated me. It's what's going to allow me to work now, even though I'm still technically disabled (I can't meet a 9-5/M-F schedule, there's no training or work aids that would allow me to do so, either). But I know that from the outside, this all looks like I'm just able to come and go as I please, and work easy. No one can see that I'm coming and going as my disease dictates, and that I have a second full-time job managing this beast.

As a result, I must be very careful never to take advantage of this situation for personal want. Their generosity and trust, beyond what they pay me for my work, is making this all possible. It's not right to abuse that. So I do my best to act in a state of gratitude at work. I remind myself several times a day: "We're all so lucky to be here..." This helps me stay upbeat (but not overly chipper) even on tough assignments. It allows me the emotional fortitude I need to look at a problem and go, "We'll figure it out, don't worry," rather than any number of negative responses. And I hope that makes up the difference that I can't keep a good schedule.

But of course, I still worry that they're not going to be happy about my irregular hours. What I should probably do is relax, because nervousness is not going to help the situation. Here's the self-talk I'm going to try to practice to see if I can't settle into the grove of things...

They like you. They told you as much. You're doing good work. It was a two month contract, and they're keeping you on indefinitely. It's more than you wanted. Don't let that frighten you. It means you can relax, that what you've been doing so far, they wholeheartedly approve. Breathe. You've done great, kid! You know what they expect, and you know you can deliver. Don't worry about when---they don't! Just do it well like you have been. Go get 'em, tiger!

Ah, yes... that feels better. What self-talk do you use?

I just watched "The Secret"

Do not believe anyone who tried to sell you on the idea that your thoughts create your reality. There is reality, and then there's our perception of reality, and the two are never the same.* Our thoughts can change how we see reality, but it doesn't change reality. The so-called "Law of Attraction" is a myth. Wanna know how we're not shaping reality? Stand on the shore and try to hold back the tide.

Moreover, you can always decide to turn your attitude around. Again, that can change our perception of reality, where we're more apt to notice good things, and shrug off or ignore the bad. But that doesn't keep the bad from happening! People still get sick (which is the majority of people, not the minority), accidents still happen (just ask the E.R.), and we still get things wrong. Wanting it really bad doesn't make it a reality. Just ask anyone who's won the Silver.

We're not powerless. We do have some control over what we notice. We can focus our thoughts to see the big picture, and not let the little things bother us. There are ways to bolster our emotional resilience, and learn how to bounce back from things faster. But "things" still happen. There are still mean and bad people in the world, willing to do others harm. We can't buy the snake oil that says the bad things happened to me because I was thinking bad thoughts. That's BULL$H!+, plain and simple. And it's guilt you neither deserve nor need!!! Go ahead and think what you like. It's not some boogeyman that's going to come up and bite you. You may have a "sixth sense" of things and have the thought before the event happens, but that's just noticing that this time, your thoughts lined up with how events turned out. Statistically, that's going to happen from time to time. It's completely normal. (Or you may actually be spooky. YMMV.)

If I'm having a bad day, a lot of times I can turn that around. Here are the steps.

1. Take a deep breath


2. Decide to start the day over. Everything bad that happened to you is now "yesterday."


3. Imagine the feeling of having started your day, and it was wonderful.


4. Moving forward from that imaginary place of having a good day.


5. Allow the day to unfold in a more positive way, because of your new happy attitude. ("Problem? That's no problem... This is all manageable.")

It's not magic. It's psychology! It's what Twelve Step programs call an attitude of gratitude, and point you to page 417 (what used to be page 449), of the Big Book of Alcoholics Anonymous. But the story behind that was towards the end of his life, when his health was failing and chronic pain creeped in, Dr. Paul O had difficulty maintaining his attitude, and ended up bitter again. But I can't blame him! Unmanaged chronic pain is a devil, and losing your health is something to be mourned! We folk with chronic illness just have more time to get used to it. We learn early that loss of health is the natural state of things, and we learn to make peace with it.

But "The Secret"? Malarkey. Don't believe the hype, and don't punish yourself for things you're not doing. You're not manifesting badness into your life. That's just life. Bad things happen. Good things happen. Some things, that we at first think is bad, we can then become very grateful for, once new evidence emerges. "For there is nothing either good or bad, but thinking makes it so." -- Shakespeare (Hamlet) Free yourself from this idea that you make bad things happen to you. Forgive yourself. Take responsibility for your actions, and let the rest go. You didn't think this to happen to yourself. No one does.

[/rant]

* We actually cannot perceive reality as it is. For one, we don't have the proper nerve receptors in our eyes to be able to see the wavelength of light, called Ultra Violet. Bugs and birds can see that wavelength. We can't. We're all color-blind, in a sense. Our view of reality is very limited. It's enough for us to do wonderful things, but the fact remains: it's still limited. Reality, and our perception of reality, are two very different things; our perception of reality always falls short.

p.s. We do understand how electricity works. It's how we're able to build computers.

[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!

This Happiness Project

As a society, we've taught ourselves that if we're successful, we'll then be happy. But with each success, we then place the goal post out farther: I need a better job, better living arrangements, better car, better... whatever. And then we can never be happy, because we never get there. But now science has figured out how to turn that around. From a field called Positive Psychology, I bring you, The Happiness Project Facebook Event.

Based on the work of Harvard Psychologist, Shawn Achor, (http://www.ted.com/talks/lang/en/shawn_achor_the_happy_secret_to_better_work.html or see the video below) This Happiness Project is about using the latest methods of neuroplasticity to train our brains how to be happier.

There are daily exercises, as well as individual projects we're going to go over that you can do at home, all geared towards making a happier you in a month (though you can continue to participate longer if you wish!).

The Happiness Advantage details out how to take this journey into transforming our minds on seeing the positive, and the opportunities available to us. We can use this event to help each other, because building up new patterns of behavior (like eating well) is easier with moral support!

So this is a no-pressure event. If you miss an assignment, don't worry, just try again the next day. See how much you can do, and if it helps you feel better about your life. I want to keep this fun and low pressure. This is about happiness after all!

Here's This Happiness Project:

1. Say three good things that happened to you that day. Shawn alternates in the book between calling this "Three Good Things," and "three things for which we're grateful for," that day. Either one works. Do this every day, posting at the event, your timeline, or in a paper journal.

2. Blog or paper journal about one positive experience, past or present. Write for 20 minutes, three times a week. If you blog, share links here to spread the positive story goodness!

3. Meditate for 5 minutes, every day; just concentrate on breathing in and out. Meditate on something positive (real or imagined beach vacation) for 20 minutes, 3 times a week.

4. Exercise. (They say 45 minutes 3x/week, but if you have heath issues, be sure to go over any exercise plan with your doctor first.)

5. Do 5 conscious acts of kindness. This can include publicly showing your appreciation for someone else's hard work, paying $3 towards lunch of the stranger behind you in the drive thru, calling up customer service just to say everything is working and that you like your products, letting someone go ahead of you in the grocery check-out line, picking up 5 pices of trash in a public park, whatever... Do these 5 Conscious Acts of Kindness once a week.

Studies have shown that we need 4 positive to counteract every 1 negative. That means, for every awful story of despair on the news, you need four positive stories to balance out. For each negative comment you hear about yourself, you need to hear 4 positive comments to come back up. So, post things that help you with your positivity here, and that will help someone else have a positive story for their day! (Feel free to post anything that restores your faith in humanity, here. That could even count as one of your conscious acts of kindness!)

I'll also be posting other fun, uplifting, positive projects that they mention in the book, like: How to give your job meaning, even if your a janitor! How to have happy dreams about the future. How to help make those happy future dreams a reality. All sorts of goodness!

Anyone is welcome to join any time.... Stay for 30 days or stay for more!

Since some people have been eager to start,
Today I began the Three Good Things part of the exercises.

Here's the format. I'll make a daily "Three Good Things!" post some time in the afternoon. Remember, though, that it's good to wait towards the end of our day before sharing. When you're ready, reply to my post with your three good things that happened to you that day, or three things you're grateful for that day.

It's the act of remembering our day, and looking for the good things, and drawing those memories that is a big part of this. But sharing with others is also an important part.

In the book, it mentions how one powerful executive in China decided to share his Three Good Things with his family at dinner each night. Each member of the family participated, too. When the project was over, he didn't want to keep doing it. (In the book it explains why...) But his children then refused to eat dinner until they did the Three Good Things exercise.

It's not just what happens to us that's important. It's that we share it with others, too. This is what brings people together. When we share about good things, everyone's experience of goodness grows. We can actually experience the other person's happiness when they share, because we are then reminded of similar events of happiness in our own lives (or we can imagine such events and experience the happiness that way). Happiness magnifies happiness.

When you're ready, BEGIN! ^_^

Next: Tips on Building New Habits & Breaking Old Ones P.S. I will be blogging here as part of the event, starting August 1.
[Update]

I had to add a disclaimer... See, I forgot one little thing: the body doesn't care if it's good stress or bad stress. Both include a shot of adrenaline & cortisol. Basically he's exchanging a bad stress for a good stress. But if the problem is with stress itself, regardless of whether it's good or bad, then this system still incurs health costs. I forgot how sick I can get from *good* things happening. I can't lose myself in flow without being really cautious (which is kinda counter-active to flow, so....). While I cannot manage this! I still encourage those with healthier bodies to try!

Why I don't read other blogs... (Confession)

I've been thinking about it for a few days because it's been weighing heavily on my heart. Here I am, blogging away, getting all this support from you, and I have a difficult time turning around and reading what you---my fellow bloggers---have written. Oh, sometimes I'll rediscover Google Reader and go on a blog reading binge. But most of the time I don't keep up. And it's the same reason that healthy people have a difficult time talking to us: It hurts too much to know.

I want to be there for you, to help cheer you on, to lift your spirits up... I want to hear about how you're succeeding, because I want you to be successful in your life. I have trouble hearing about the struggle, pain, and heartache. I want to recognize and deal with that. I want to help. However, I want to keep my mind focused on the positive, and that's difficult to do when I'm reading stories about the negative.

And that's what's so difficult about talking to people with chronic illnesses! If we look at the illness, that's a lot of struggle, a lot of disappointment, a lot of heart-break, a lot to despair over... And for so many people where there's only treatment, never a cure... And for so many other people for whom the illness is just a fight to have it not kill you... I really don't want to hear about how an illness is overwhelming and swallowing up your life.

See, the problem is, I've been through that. When you tell the story of your pain, I feel your pain, I remember my pain. It all comes back in a horrible flood of traumatic memories. I can't handle that on a regular basis. It's too much. I have to be in a mood that feels like every problem is solvable, and I am mighty, before I have the strength to read other blogs. Otherwise, I could find myself awash in memories that then trigger me and leave me shuddering...

I want to hear about everything you're grateful for despite what's going on. I want to hear about how it's difficult, but that you're learning coping (or you're fighting to learn how to cope). I want to hear about how you're successful in dealing with your disease. I want to hear about the humor you've picked up along the way... I want to know about you---your hopes, your dreams, your inspirations. I want to know how your beating back the darkness.

I know about the darkness. I've traveled enough of its depths already. I don't want to know more. That's why I don't read other patient's blogs. It hurts.

Forgive me?

I'm Working Again!!

Bust out the fanfare and call a parade, I'm working again!! Now, it's not an absolute sure thing. I could collapse under the stress and discover that it's not possible... but right now... oh, things look good! I'm able to control my pain through my medication. No one at work is any the wiser that I have this much going on with me... I got my first paycheck this week. A PAYCHECK!!! It was only a few months ago I was dreaming of having my symptoms managed enough so that I could work, and now... holy cow!!

I didn't think this was possible. I didn't think they had the drugs out there that could take care of my pain and not demolish my mind. They do! I didn't think there was a way to control my nausea without putting me to sleep. There is! I didn't think we could get my migraines to a point where I could work through them. We have! I didn't think there was medication for the neuropathy so that I could be reliable enough to write all day. So far, so good...

I'm pacing myself. I'm taking things slowly and not rushing. I'm being cautious with my body and getting plenty of sleep. Right now all I can do is work and sleep during the weekdays. But that's okay. I get SO much of my life back. I don't have anyone else I need to be awake for during the week, so what does it matter? And as my tolerance for activity builds, who knows??

We still have to battle my autoimmune disease. I need to save up so that I can make it through 4 months of treatment. But holy cow, now I have a way to do that!! I've got 9 months... nine months of training wheels, where I still get my SSDI in case this all suddenly falls apart on me again. I think I'm able to keep my Medicare longer, but who knows with this whole Obamacare...

And I realized today that for the past year, I've been able to shower standing up, and only when I was with migraine or the stomach flu did I resort to sitting in the tub! That's HUGE!! That was things started getting scary for me when I originally got sick---I would get too dizzy in the shower and would risk passing out if I tried to stand. It's been over a decade, and I'm now able to shower like a normal person again!!!

*LOL* Oh, but there is a mountain of debt awaiting me. I'm pretty sure it's about the same price as a house (the whole house, not just the down payment). That is daunting. But thankfully, I have a lawyer in the family who might be able to help me restructure my debt. Oooof... that's a huge problem of success: cleaning up the wreckage of my past!

But now I get to clean up the wreckage of my past! Now I can start to be a responsible citizen again! I need to pace myself in this area too, because trying to do too much too fast can leave me broke. I need to be responsible with my finances, of course. However, now I'm not making a wreck anymore. (So far... training wheels, and we'll see...) I'm a really real adult again! I don't need help. I can accept it if its offered, but I don't need it anymore. I can take care of myself!

At the beginning of this disability I was in so much pain I didn't know how I was going to survive, let alone get back to where I was. There were several times where I almost didn't! That was scary... I was lost, deep in the wilderness of chronic illness. Am I out of the woods? Maybe... signs are pointing to yes...

HURRAH!!!!!!!!!!!!!!

Thank you everyone for your prayers and support during this time. I'm still nervous about my ability to do this, but I know how proud everyone is of me, and for that... bless you. I've felt so worthless and miserable for so long. It's tears of joy now when I choke up. You believe in me, and that means so much. THANK YOU!!