Showing posts with label forgiveness. Show all posts
Showing posts with label forgiveness. Show all posts

Monday, May 4, 2015

Remembering Our Worth

When we study history in school, we're taught the names of the big movers and shakers, the "important" men and women of the world. What you realize when you start to become a student of history, is that some of the most precious accounts we have, often called "eye-witness accounts of history," come from ordinary people like you and me. This is something I realized young, as my parents told me their stories of world and national travel. I was lucky enough to have traveled extensively before I became ill and through my recovery. I have traveled to the Hopi Nation, one of the oldest continuously enhabited places on this planet (the timbers in their homes have been carbon dated to reveal a construction time of over ten thousand years ago []), by one of the oldest nations on this planet. I have been privlidged to see their dances and been invited to sleep on their land.

And when I look at my father, still working so hard after all he's been through (his fear of hospitals rightly comes from a time he had to be quarentined on board a ship because of a case of Yellow Fever, and later in life he suffered three years of hives no one could explain... all while trying to attend college). He's seen an amazing age, and it is thanks to his interest in computers that I have had such an amazing career. We were talking last night about logistics and how he and I have similar experience of how to launch and invasion: his from his time in the Navy, mine from software and hardware products. It's the same theories because it's all about trying to coordinate the actions of many individuals into one large action over a wide scale.

This requires weilding two skills sets: the ability to work autonomously without oversight (working even if no one is watching), and the ability to coordinate with others, and often very brilliant minds coupled with hefty egos and personalities (getting along with exactly those types who do not play well with others). And all this networking must be coordinated through massive communications, often to different groups working in very different time zones. It requires an adherence to rules that can be frustratingly fluid, as flexibility is also required to adapt to ever-changing discoveries. In addition, people need to be organized in time and through time, kept on the roughly the same page and coordinating critical tasks at key points. All this results in what is known in the "biz" as: organized chaos.

Yet even with these similarities of knowledge, I also realize how much my father is a treasure: he traveled one of the last regularly operated ocean liners. He saw the first copying machine, the first microwave, the first VCR, and saw computers shrink from multi-roomed beohemiths into hand-held near-magical devices. He's seen me become a bionic woman, just like they had on TV, only to save me from pain rather than augment reality. But the marvel of that device: it had a battery, it was re-chargeable, and wearable inside the human body. What a creation to be witness to! And, too, he remembers growing up in the shadow of World War II, events that still shape the lives of every person on the planet today.

What amazing sights he has seen! And what's more, each of us is a witness like this too. Who knows who's letters are going to survive 1,000 years? Who knows what digital archeologists will find fascinating 10,000 years from now in the blogs and posts of our lives? Who will future historians look to, to be eyes and ears into our world generations from now? How will they find us different? How will they find us the same? Heck, what will these posts look like to me, thirty years from now? Hello, my future self! I'm happy to have written this down for you!

Which one of us will be discovered and renamed to suit their future language? How clumsy and archaic will my attempts at communication seem. Will any of this survive at all, or will some great catastrophy turn the lights ot on computers forever, causing all this knowledge to be locked away and forgotten forever? Who can say what the future holds.

Who can say what your future holds?

Is there an Opera sleeping in you? Is there a simple item you treasure that will become a family heirloom? Is there an act of forgiveness that unites estranged parts of your family? Or is there a phone call that rekindles a spirit of closeness in a friend? Much as this day might seem connected to yesterday, there is an impenetrable wall that exists between now and yesterday, one we can never step past. In each moment, we are given the opportinity to choose whether to keep in step with the past, or break with tradition and choose something new. Thought becomes word, word becomes deed, deeds become reputation, and a reputation becomes a legacy. Legacy becomes tradition, tradition becomes culture, culture becomes identity, and identity becomes preferences. Preferences become thoughts, and the whole cycle is born again anew.

What a miracle our lives are! What amazing things we can do! We can create such joy, compassion, and community together. So remember to celebrate your life and the lives around you. Give someone a word of praise or share a laugh just to help lift a stranger's spirit. We have such a capacity with our lives, in even the smalles things we do. Celebrate you, celebrate us.

We're worth it.

Friday, May 1, 2015

The Bumpy Road of Recovery

I have been freaking out all morning, and I just now realized why: I think my remission has ended. For the past 3 months or so, I've been able to be off both my steriod (prednisone) and my thyroid medication. It's a balmy 72 in my livingroom, and I'm shivvering like it's 50. I have on sweatclothes and a blanket, and it's only when I add a space heater blasting on my legs (under the blanket, no less*) that I feel warm enough. I know it's not a cold, I just got over that. Add to that other symptoms that are tell-tale, and I may not be in remission anymore.

It's difficult to tell, sometimes whether it's this set of symptoms causing one thing or another. But I've gone in and out of remission at times, and I've always been spot-on in my sense of these things. Many doctors find this difficult to believe, so I've learned to prefice what I know with, "I think I might..." and that results in much better service. But trust me, I feel it when things aren't right.

And I hate it.

That's why I've been sitting, binge watching videos, with a blanket and heater on, because I don't want to admit that I'm still frail enough to require this crap. I hate taking pills, and I have rebelled countless times, even in the onslaught of migraine pain! I seem to want to insist I'm fine and don't need help, when clearly both I and others know I do. I'm not like some people who seem to love being sick. I want to be able to conquor the world, and sick was just not a part of my plans! I was so bad, that as a kid, my parents used to think I ran myself ragged. They were partially right, because learning how to take proper care of ourselves takes time, but the also didn't realize how much of it was just the apple not falling far from the tree. My mother had pneumonia before I was finally able to talk her into seeing a doctor, who then sent her straight to the hospital. My father ignored his stroke for days out of the same stubborn fear. Is it any wonder I do it too?

Yet I have to count myself lucky. I do have a disease that goes into remission and one, that when not in remission, at least responds to medication. There are plenty of people who aren't that lucky. There are other people whose disease carries a stigma, where to be sick is also to be judged as earning punishment for a transgression, and most of these reputations do nothing to help anyone. The keyword to all of this is forgiveness.

I need to fogive my body for not being what I wanted it to be. I need to forgive myself for not having any control over it. I need to forgive others who, whether or not they caused their situation, deserve forgivness for at least not seeing a better way out of their problems. I need to forgive myself for being scared of what is a reasonably scary situation. And I can be grateful that I've been given the grace and courage to continue on despite it all. I'm very lucky the headaches aren't every day, and the further I can get from that nightmare, the more I can recover.

Though it may be a bumpy road ahead, I am glad that at least I still have a road. Each day is a new beginning, and I am glad I can take part in it. Even if that means being a little scared for a while about a slight decline in health. It's nothing I haven't lived and worked through before (my entire trial work period was while on these medications), so even though it's not how I would like things to be, it's all still manageable.

Ever forward!

Saturday, April 12, 2014

When You Don't Get What You Need #HAWMC

How can I #ask for what I #want, when I can't get what I #need? That question hit me like a psychological bomb this afternoon. Mornings for me are generally difficult and full of negative thoughts, and I've learned to just ignore my brain until my morning meds have kicked in. That's just safer for everyone. But this though hit me right around noon, long after my better living through chemistry kicked in. This was a thought explosion that required further investigation. Since today is Blogger's Choice, I'm choosing this: How can I ask for what I want, when I can't get what I need?"

Sounds like the line from a Country-Western song about heartache and loss... And to be fair, it is about heartache and loss. Add a line before it about the season, and it becomes a Japanese Haiku: Morning sun turns frost into dew. How can I ask for what I want, When I can't get what I need? It's a question that's more Goth than Amanda Palmer in a Death costume. It just drips with teen-aged angst and insecurity. Only it's coming out of my head at fourty because my friend invited me to sushi.

The thoughs went like this. Oh, cool, sushi! I could totally be frugal and have something delicious. I'd never think of doing this on my own, what a delightful idea! I should think of other frugal ways to spend time with my friends, because I don't invite them over, and I really should. We had such fun when Mike had everyone come over for drinks. I should be more spontaneous like that. I know I used to be... I wonder ...

Here's where I should have stopped. It's as though I were driving on a mountain road, and suddenly a darkness descended. I could see the turn in the road, but it was too late, the thought had too much momentum, I couldn't turn away from the idea that sprung up next. I swerved to avoid it, but to no avail! Over the cliff I went...

I wonder why I don't do that anymore. (Turn now!) I used to do that all the time when I was younger. (Look out! Swerve to miss it!) I wonder why I lost my spontaneousness? (No good! You're over-correcting!) It wouldn't be too hard to clean this place up & invite folks over. (Too late...) But I'm in too much pain to even make lunch. (We told you so...) How can I ask for what I want, when I can't get what I need? Boom.

And suddenly it all made sense why it was so difficult to take time out to care for myself, or to suggest fun activities, or invite people over. It's not that I don't want to do those things, I do! It's not that I don't have a circle of friends to ask, I do! But there's this awful noise coming off this hole, see... And I'm trying to fill up the hole so that we can have some peace & quiet in here again, but the damn thing won't. fill. up! It's maddening... Hey, can you give me a hand? Grab that shovel...

For all the time I spend lost in thought, there are lots of things I would just rather not think about - what I'm going to wear (if I could wear a uniform and just not have to think about matching slacks & blouses), what I'm going to eat (I can seriously eat the same 3 meals for months...I'm doing it right now, in fact), how to wear my hair (out of my face and off my skin - military cut for a girl? Right here). These things, to me, are things that take time away from doing. I'd much rather do stuff. But so much of my time is spent managing this symptom or that flare, that when I get to times when nothing is going wrong---my window for fun---I usually just spend it exhausted, trying to recover from shoveling remedies into that giant hole of need.

It made me realize, not only do I believe I can't ask for the things I want in life, but I'm also VERY angry at my body. Unfortunately, yelling at it means I'm yelling at me. My body, as much as I would like to think my consciousness is separate, is an integral part of who I am. My body *is* doing the best it can. It's just broken! It can't help that it's broken. And I need to forgive it more. Poor thing, it's gone through so much and been pushed so hard when it wasn't getting all it needed...it's done amazingly well to operate under the deficiencies I've dealt with. It's supported my mind, and my ability to see myself through some hairy situations. It deserves more credit that I've given it. And, boy, does it look good for 40!

So step one: Stop getting angry at my body when it's not doing what I want.
Step two: Forgive my body for not allowing me what I want.
Step three: Take care of my body's needs with gratitude.
Step four: Find frugal ways to have more fun with my friends. (I *do* deserve it, and if I'm careful, it *can* be good for me.
Step five: Continue my work to better my health & function.

Even if not all my needs are met, I can have what I want, if I'm clever & careful. The good news? I'm clever. The bad news? I'm also impulsive. I can still be okay with that combination, as long as don't let my "failed attempts" drag me down. I think that can help me get some of my mojo back. But my big fear is always spoiling everyone's time with my health problems. It's happened many times before, and I know it can happen again, suddenly and without warning. I think I can he careful enough to show myself it is possible to have what I want. Time will tell.

I'll keep you posted! ;)

Tuesday, February 26, 2013

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. ;)

Monday, December 31, 2012

If you seek a teacher, one will appear

I have recently made the discovery of a true gem in Denver, and that is, a minister I can believe in. He's highly intelligent, has been deeply wounded in the past and has recovered from it. He has amazing spiritual strength paired with a wisdom and humility rarely seen. I am in awe.

He answered my question: "How to you deal with being cast out of paradise?" His answer was: "How can you bring paradise to other places except by leaving it?" I was dumbfounded. And I'm rarely caught speechless.

So I put to him my question of how to get out of bitterness. His answer was, "How do we know our good is supposed to reach this generation? How many people were never recognized until centuries after their death? Do you think Harriet Tubman would believe there are statues of her all over the place? Not on your life. The point isn't what happens now. The point is what happens in a scope we may never have the ability to comprehend, it's so grand. But why should that stop you from trying? How else is it going to get out there if you don't put it there?

I challenged back that, sure, I kept trying. But I didn't do it with hope in my heart or any sort of grace. It was raw stubbornness that kept me going and now that I've reached success it's come too late. It's like the scene from The Last Unicorn:

MOLLY GRUE: (gasps) No. Can it truly be? Where have you been? Where have you been? (yells) Damn you, where have you been!?

UNICORN: I am here now.

MOLLY GRUE: (laughs bitterly) Oh? And where were you twenty years ago, ten years ago? Where were you when I was new? When I was one of those innocent, young maidens you always come to? How dare you, how dare you come to me now, when I am this? (She begins crying. The unicorn puts her head in Molly's lap, and she caresses it.)

SCHMENDRICK: Can you really see her? Do you really know what she is?

MOLLY GRUE: If you had been waiting to see a unicorn as long as I have...

SCHMENDRICK: She's the last unicorn in the world.

MOLLY GRUE: It would be the last unicorn in the world that came to Molly Grue. (She sniffs.) It's all right. I forgive you.

Why did success come now, when it's too late to fulfill any dreams I had? And he said, "Where are my limitless resources to fulfill the dreams I have? It's not about fulfilling our dreams the way we want to, it's trying to figure out how to fulfill them in a world that's based on limited supply---what good can we still accomplish anyway?"

And I knew he was right. I was robbed. There's no doubting that. I was sorely treated and greviously wounded in a way that will haunt me the rest of my life. But my capacity to love and to show love has in no way been diminished. My ability to teach and to help others and spread goodness in the world has not been diminished. And I may never know the true extent of my impact on the world, but no one really gets to know that.

"So given the choice of living in regret of the death of your dreams, and making the best of what's left to the greatest possible good, wouldn't you want to try for the latter?"

Yes... Yes I do.

Alright 2013... My loins are girded; my head's held high. Bring it!

Saturday, December 29, 2012

Fighting Bitterness

As I began to look back on 2012 and what I've achieved, I have to admit, it's been a pretty phenomenal year. But suddenly, I was thrown into cognitive dissonance. It's been an amazing year!! So why don't I feel amazing? I struggled for weeks wondering why. I realized that I'm full of bitterness. Full-to-the-brim angst that would put the Grinch and pre-reformed Scrooge to shame. I had to ask myself, what gives? It's all been progress. Why am I still miserable?

It took a while, but when an old friend contacted me, it all came rushing back. Yes, this life is VERY successful, given what I have to deal with. But it's a second-hand life. It's not my primary life. I had that life. I was amazingly happy before this all came crashing to a head, changing my world forever. I had to leave the one place I called home, because the climate there was triggering epic levels of pain, both for my migraines and my neuropathy. That, and all but two pain clinics were pressured to go out of business, and the last to were being pressured to not use narcotics at all. And I need narcotics. My home cast me out. It broke my heart. I still haven't recovered from that.

When I visited Seattle to hook up with my old doctor to see if she could help, it was like all this tension just melted from me. I was relaxed. I was joyful. My spirit was uplifted. Until, of course, towards the end of the trip when the pain started to seep in again. Then it broke my heart all over again. I love everything about Seattle, including the ever-present rain and the terrible traffic. There is a celebration of the individual in Seattle that makes it so no one has the right to judge. To each their own! And glory to it. That was home. I wanna go home. And I can never go home.

I've found where I need to be, and I need to find a way I can make peace with it. However, it seems the more I learn about the character of my new home, the more I don't like it. I've met a few spectacular people, but on the whole, I am not a fan. I'm sure that to several thousands of people, this place is their home. Just not me. And I struggle to fit in, in a place I don't wanna be. Do you think Adam & Eve were able to get over getting kicked out of the garden of Eden? Because it feels like I was kicked out of paradise.

I loved my life. LOVED it. It wasn't perfect, but it was wonderful, and filled with wonder. Ten years later, it's as if I'm waking from a crazy nightmare, only to find that everything that was familiar and comfortable is gone. I can't dance. I can't even be around the music to dance. I can't paint. I still have the skill, and my ability has even improved, but I can't hold a paintbrush long enough---my hands, they betray me. My body betrays me. It has taken what gave me joy and perverted it into an exercise of torture. I can't even get too interested or excited about a subject, lest I blow a migraine. I feel like a butterfly in a bell-jar, beating my wings against an invisible force-field, unable to fly.

I knew what made me happy. Now I can't do any of that. And I can't figure out what to do in its stead! I wouldn't feel so robbed, if I could replace it with something else. That, however, is easier said than done. I spend 30 years figuring out myself and what I wanted. Now, most of that information is pretty useless, if not downright hazardous. I have to come up with an entirely new list of things to make me happy, and I don't even have a clue where to start! Thinking about it sure doesn't help, because all it turns into is rumination on those things lost to me.

Certainly, I don't want to live mired in bitterness, unable to enjoy the success of 2012, but I don't know how to fix this!! Halp!

Tuesday, November 27, 2012

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!

Monday, August 27, 2012

Nervous working...

I'm nervous my co-workers think I'm lazy...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?

Saturday, August 25, 2012

All work and no play *will* make you crazy...

When I heard people who were healthy enough to work, but not healthy enough to to anything else then complain that they couldn't do anything else, I thought they were being ungrateful. I thought that I would give anything to be even that healthy, and if I got there, I certainly wouldn't be complaining! But I get it now... it's not that these people are ungrateful. They're expressing a very real, very dangerous situation, where the mind is not given the time it needs to disengage and rest.

If our minds don't have enough downtime during the week... If it's just: work-sleep-work-sleep-work-sleep-(etc)-weekend, then, as a result, our minds see nothing but work for five days straight. There's no unwind time, there's no reducing stress, there's no "walking away" from it for five days. And a two-day weekend is not enough time to unwind from five straight days of work. This is no way for any human to live. This shouldn't be true of people with invisible illnesses, this shouldn't be true for the platinum miners in Africa. It's not healthy.

There are studies out there ranging from farm, factory and mine workers, where the work day is so long that all they do is work. And the results of running a schedule like this are always shown to be brutal. Just because we can, doesn't mean we should. The mind need rest and relaxation interspersed between work, or our ability to function suffers. For example, from All Work and no Play can be Deadly (Jul. 11, 2002), Sandy Smith says, "Feel like you're being worked to death? You might not be far from the truth, according to a new study, which found that long work hours and little sleep or relaxation time is a recipe for disaster."

So, blessings upon blessings, my employer is willing to work with me and let me go to a part-time schedule. I need to get more reliable technology, so I can be in full contact with them should they need me, but I will be able to do things like work from home and cut back my hours to less than 40/wk. That will allow me to have the down-time I need to be fully-functional at work. I won't have to worry about the quality of my work suffering as a result!

And my apologies to those whom I didn't believe before now. I get it now, and you're right: it's not healthy to try to just work and sleep during the work week. That's unacceptable. You absolutely need more than that.

Monday, August 13, 2012

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.

Friday, July 13, 2012

[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

Saturday, May 26, 2012

Being sick is no excuse...

Let me get one thing straight: being sick is no excuse for treating other people poorly. Just because I feel bad is no excuse to make others feel bad. My feelings are my responsibility. Just because I feel like $#!+ is no excuse to piss in other people's Wheaties. Having a chronic illness is no excuse for abusing someone. I don't care how sorry your life is. If you're reading this, you've got it better than MILLIONS. Pull up your big girl or boy pants, and DEAL. I've only know a few people like this*, in the hundreds of people I know like this**, so this is not an epidemic. But a few bad apples can give a group a bad name. So I wanted to put this out here.

Scream and cry and rant all you want! By all means, rage against your disease! But don't ever take it out on other people. This is a darkness we have to carry. They are blessed to be in the light. Don't cast shadows in their direction. Age catches up with us all, they'll be dealing with it soon enough. And then we'll have the experience that my grandmother had:

My grandmother was talking on the phone with my mother, and she was complaining about her friends. "They've all become such whiners...," she extolled. And then she suddenly realized, I've had a lifetime to get use to chronic illness, and they've just started...

90% of seniors have a chronic illness, and 52% of seniors have a disability.

They've just started...

We are the vanguard. We are the troops that stand at the tip of the spear, the first and in front, to break way for everyone else. We have been blessed with TIME: to learn, and adjust, and get used to... This is coming for them too. Age catches up with us all, and for them, there are a lot of surprises.

Take for example... Ask yourself: how many people do you know who've been shot? Not many, I hope. And then think: how many shoot-outs have you seen on TV and in movies? Too many to count, right? Now, what's the myth that we've been sold? That age means nothing anymore (60 is the new 30), that we have a pill for everything (Viagra... don't let a little age slow you down; Zolft, "You just shouldn't have to feel this way..."), and that medical mysteries can be solved by a crack team in 37 minutes ("You just need to find the right doctor..."). Now, how true is that in your life?

They're going to find out soon enough. We need to be ready... to be there for them. We are the vanguard, the ones who learn what we're facing, first. For now, we can help one another, because this $#!+ is hard, and we shouldn't have to face it alone. And then, once they catch up to us, we can help them too.

Feeling bad is no excuse for treating you badly. Don't let anyone tell you otherwise. There is no excuse for abuse. There may be an explanation, and possibly forgiveness... But don't be sold the bill of goods that it's okay. That's a Myth.

* chronically ill & abusive, ** chronically ill

Wednesday, April 18, 2012

#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.

Wednesday, April 4, 2012

#HAWMC - I blog about my health because...


I blog about my health because I have to. I have to for myself, for other patients like me, for doctors, for complete strangers I've never met. I have to because we don't like talking about this stuff. I blog about my health because what I'm going through is invisible, and it affects every aspect of my life, including who I am able to be. I blog about my health because I feel like I'm in the closet. People don't want to know, and I get judged and mistreated because of my disease. But most of all I blog because: "If you think you can’t make a difference, you are wrong. If you think you are too old or too young to make change happen, you are wrong. If you think that somebody else will do it first, you are wrong."

No one likes a loser. Either you're on the side of health that's bigger - faster - stronger and all about being a hero, or you're on the side of health that's a nightmare. It's difficult to talk about nightmares. But I think we can change the conversation. I think that if we're able to look at health problems not as a sign of weakness, but as a challenge that the Universe has given to us, we can start to see people with chronic illnesses as heroes.

It's my intent to help people get a positive perspective on chronic illness. We need to change our ideas of what it means to be sick. It's a scary experience, because it's times like this that we realize just how little in control we are. Everyone knows what it's like to have the stomach flu, and have your only though be reaching the toilet before something terribly embarrassing happens. Sickness can through us back into the helplessness of infancy, even though we're full grown adults. That's why healthy people don't like talking about chronic illness. Because they have no idea that perserverence is possible!

As a person with a chronic illness, I can tell you from my story and others, just the amazing amount of strength we have. We take it for granted, of course. We're so busy trying to keep up with other folk, that we see ourselves as lacking in strength all the time. But I'll admit, I've been told more than once, "I have no idea how you handle all this." I didn't use to honor that statement as much as I should. I was so frustrated with the limitations of my disease, that I didn't see how amazing I had become in response to those limitations.

I'll give you an example, not dealing with chronic illness.

Joss Whedon is an amazing movie producer. He did the screenplay for Toy Story. But his best films are the films that had the most restrictions. Either there wasn't enough money, or there wasn't enough time, or something was going terribly wrong. Whenever that happened, he made amazing work. The movie Serenity is probably my favorite example. (Watch the behind-the-scenes... they're hysterical and informative.) The movie came from the TV show that was canceled, until a grass-roots fan campaign got enough support that they were able to finish the series in a major motion picture. That's never happened before. And it came out of struggle.


In my Biography, I share a quote from Elizabeth Kubler Ross: "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths. These people have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people do not just happen." I want to help teach people with chronic illness that they are beautiful. You are beautiful because you struggle. You are beautiful because you fight. You are beautiful because you pick yourself up again after you've been devastated... One. More. Time.

You do not need to be ashamed of this.

I blog because this message needs to get out there and be heard by everyone. I blog because people with chronic illnesses should all hold their heads up high. This is hard! Our struggles are valiant---they make us heroes. We don't have to prove ourselves on some testing ground. We're already there! And we prove ourselves each day, whether or not we get out of bed. Because the battlefield is within us, and our bodies are at war. We don't have to hide in the shadows. We can be proud of who we are.

Thursday, March 29, 2012

Rx for Doctors...

I know I've spoken a bit here on medical arrogance, medical narcissism, and its negative consequences. I don't do it to call out doctors, so much as to say, "Hey, we already know this is going on... Why not just admit it?" But here is a video, a TED talk, that I think puts it best... a must watch for all in medical care, patietns, and their caregivers. Brian Goldman: Doctors make mistakes. Can we talk about that?

Tuesday, March 13, 2012

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 21st 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...

Tuesday, March 6, 2012

When everything falls down, it's an opportunity to rebuild

Ishvari - the Hindu Goddess of Never Not Broken
This one is kind of long, bear with me... I've noticed a lot, with myself, with the people I've counseled, that we have a tendency to rush through solving uncomfortable problems. It's not just habit... We came to this process for a reason. It makes for a quick resolution so our lives don't have to be interrupted horribly. We tend to forget, however, what we're feeling in the first place. We simply say, "I'm feeling X. X is bad. I need to stop feeling X." Wham, bam, problem solved, right? Except that we've forgotten one key step (and I forget this all the time too...). We forget to check to see if the feelings are reasonable, if they're warranted, if it's not just the feeling we need to solve but that there's a larger problem going on. "I'm feeling pain. Pain is bad. I need to stop feeling pain." This can quickly turn into managing a symptom while a larger problem (the one causing the symptom) festers and grows into a crisis. This is true for both physical and emotional feelings.

The one where this stands out the most is fear. "I'm terrified. Terrified is bad. I need to stop feeling terrified." Sure. I agree. But let's also stop a minute, after the terror has been addressed, and look at what got us there in the first place. What caused the feelings of terror? It may be perfectly reasonable. They may not be constructive feelings right now, but we didn't get to this line of thinking because we were delusional. We got there because we've had bad experiences in the past, and this one is starting to look just like that one, and OH MY GOD GET ME OUTTA HERE!!! WE'RE ALL GONNA DIE!!! This is usually diagnosed as Post Traumatic Stress Disorder (PTSD). They call it a disorder, which by their book is true. But that doesn't mean it's bad. We obviously survived that god-awful situation that made us twitchy. We did something right... Is that really a disorder or the voice of experience? So who am I to say that you're not exactly right that this situation looks like it's heading that way? But is that actually where it's heading? Are we sure?

If we drop a brick from a 60-story building, does it necessarily hit the ground? No. It may hit a balcony on the 32nd floor. Someone could stick their head out the window at just the wrong time. It could land on a truck driving past before it hits the ground. Just because the brick is falling, doesn't mean it hits the ground. Just because I know it could go hell-fire-fury bad, that doesn't mean it must go that way. And even though I see the possibility and the possibility terrifies me, I need to remember that I'm not going into this, without experience and wisdom. I'm a medical veteran. Some folks are actual veterans. We've been the dark places, have been broken to serve a horrible necessity, and come back to try to fit ourselves back into normal society, where people can't even imagine what we've seen. That's lonely. But you're not alone. You're elite.

Much of the problem I see is that we don't always recognize our successes. We take our successes for granted: why keep working on it if it worked? On to the next one. We remember the failures: if we're going to avoid it in the future, we've got to beat ourselves up right good so this never happens again.... That can easily lead to a lot of sleepless nights and poor self-esteem, quickly. Mommy clapped and cheered the first time we tied our shoes. We were so proud. Do we still clap and cheer each time successfully tie our shoes? No... we've got this one in the bag. We're an old hat at it. No need for praise, I know I'm a champion shoe-tier. It's when I'm not sure of my skills that I want the reassurance and the recognition.

I don't want you to hear, "I'm sick! I'm sick! I'm sick!" all the time. I want you to hear, "I'm dealing with something new and scary that even my doctor, the professional, can't tell me about very well... I'm scouring the internet because no one can tell me what's going to happen to me, and everything I thought about the world has been turned upside-down!" But that's a mouthful, and it took me over a decade of research to realize that's what I've been trying to say this whole time!

And though it may be silly, I've taken to rewarding myself, like I was when I was a child, when I'm able to do things that I normally can't do because of my illness. I'll clap and cheer, by god. Yes, I was an old pro at that... under healthy body conditions. But now I'm going at this on the expert difficulty levels, so there's going to be a learning curve again. Things aren't going to come as easily. It's going to take more work for less payoff. In some cases, I'm going to have to come up with an entirely different game plan, test it out, and find what works by trial and error. So it's doubly important that I recognize what an achievement it is. It looks the same as the million other times I've done it, but the experience is not the same. Getting through it wisely is what makes me mighty.

Comparing me to a healthy person just isn't fair. To the healthy person! Sure my young friends can run around and hike and zip and play on the mountainside. But they crash for naps afterwards, while I paced myself and could enjoy the whole day. I'm also an expert at functioning when I feel like crap. Their first instinct is to fall out. Mine is, "yeah... what else is new?" So as they sleep, I'm able to have the place all to myself. It goes back to the old Einstein quote: "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."

Sure, based against most human activities, I'm no good at those. But put me in my element, and just watch me soar. I never lose my abilities to handle a crisis or keep going when it gets tough. They sleep most of the time, because "my element" are moments that don't come often, and thank goodness for that. I wouldn't want everyone living in my element. That's just too rough. If my being sick means someone else doesn't have to go through this, I'll take one for the team, no problem.

Too often I think we forget this big picture. We forget that it's reasonable to feel scared and abandoned and inconsolable and all that... Just because we'd rather not have those feelings doesn't mean they're always something to be avoided. Sometimes they're things we need to embrace as part of the process. They're important feelings, and they're uncomfortable so we'll take notice of them! But these bad feelings don't have to be the end of the story. They can be a simple chapter in a long book that ultimately ends up well.

All heroes go through hard times. But because we're the audience, it's easy to say, "Hang in there! you can do this! Success is right around the corner!!" But we're not in it. We're on the outside. It's a different story when we're trying to be the hero, and it all looks lost. It's easy to lose heart in the fight. Because some days it difficult to tell if we're in a tale or triumph, or a tale of tragedy.

It's okay to feel scared, hopeless, abandoned, etc. It might not be fun, but it doesn't mean eminent death (I hope!!). What we can do is slow down and take a look at the feelings. What started me feeling this way? Why am I anticipating that it's going to be like I'm imagining? Where's my evidence? Okay, which of those pieces of evidence are valid, and which are not? Which are pieces of evidence that could possibly mean more that one thing, that I need to watch and get more information on? What could possibly change to steer this situation in a new direction? Can I make adjustments to help the situation have a more positive outcome than the time that scared the bejeezus out of me? What are my options here?

What we may find is that we're absolutely right! We have been abandoned. It is a hopeless situation. We are scared out of our minds with good reason. But that doesn't have to stop us. So we've been abandoned. That doesn't make us unworthy or unlovable. So it's hopeless. That doesn't mean we don't give it our best shot anyway! So we're scared out of our minds. It's SCARY. You're having a human reaction. That's normal and okay. It's what you do with that, that counts.

The abandonment may have had nothing to do with us at all! Sometimes it happens, and it's sad. The one the you wanted with all your heart may have abandoned you, but they may not have been able to see a good thing when they had it. And if they can't appreciate you, why bother? The abandonment may have been a gift. Or the abandonment may be temporary: the other person needs their space because they're overwhelmed and they need to leave. Sure it hurts. Absolutely. But we keep ourselves. We can help that hurt go away. We can give to ourselves what we wanted them to give to us, and in that way we're able to get our needs met enough. Abandonment comes in all forms. Whatever the form, the answer is the same: Use that time to nurture ourselves so that we can be ready, whatever the future brings. Yes, we're lonely, but we can remind ourselves what we love about ourselves, and in that way remember why we're worth being kind towards.

We may find ourselves in a hopeless situation. There are plenty of medical mysteries that baffle doctors and end up as tragic tales of suffering and death. If you were sick with one of these diseases and not depressed, I would wonder what's wrong with you. It's normal to feel upset about being sick!! Good lord, you "normal" people have no idea how much you whine when you get sick. You think we whine? Dear lord... If I had a tape recorder, you'd sing a different tune! Lol. I see it in my Facebook news updates. The chronic illness folks only complain when it hits epic levels. Healthy people complain at the first sign of symptoms. "Sniffles and sore throat. Oh, man, I hope this is just seasonal and I'm not getting a cold." Compared to, "Had to go to the ER again last night. Thankfully it was only a 4 hour visit." It's two completely different worlds. You can't compare the two situations or even call them similar. So we shouldn't berate ourselves, on either side. Don't judge a fish on it's ability to climb a tree.

We may find ourselves inconsolable. That's okay too. There is something to be said for allowing ourselves a complete and total breakdown. Sometimes, we just hit our limit and have to stop and rest. When we do, all the emotions that we've been pushing aside because we've been trying to Get Stuff Done, come rushing to the surface. We break down. We feel weak and vulnerable. We may feel, because of all this, that we've failed or we're not up to the task. This isn't necessarily true. It may just be that we've hit our limit and need to rest. We need to take a break and concentrate on something else for a little while, because we're frustrated, feeling hopeless and trapped, and it's driving us crazy. None of that means we're weak or inadequate. No one can stand on the shore and hold back the tide. If you judge a fish be their ability to climb a tree... It means we're human animals and we just found our threshold! Like the govenor on a car engine, we can press the gas all we like... the car is not going to go faster. It's okay to allow ourselves time to stop, rest, think things over without pressure, and try again later. Life and love are marathons to be endured, not a race to be won.

Too often, I feel, we find ourselves in these situations where we're overwhelmed and trapped, where we've run into some life problem that no one could handle but we have to anyway... and we end up feeling miserable at ourselves. The situation was traumatic. So our brain holds on to it, ruminating and going over the scenarios again and again in an effort to try and keep us safe. It's obnoxious at best, and life-crippling at worst. We need to protect ourselves from that ever happening again!!! And because we felt couldn't protect ourselves, couldn't protect our friends and family, we end up feeling like we don't deserve to live. We feel like a failure as a human being. We feel like because we didn't feel brave, strong, or powerful, that we can't handle it it if happens again. This isn't true.

Just as bones can be set, mended, and made strong again, so can our sense of self. We will never again be the person we once were (neither are bones after they're broken), but that's okay. We made it through. That situation wasn't the end of us. And that situation may define us, but we get to choose the definition. Broken? Sure. I'm never not broken. But there's a Goddess of "Never not broken" and she seems pretty cool to me. She rides the back of a crocodile, and she is a warrior goddess. Like the line from the Modest Mouse song, Dashboard, "Oh, it should have been, could have been worse than it had even gone...". The things that I have been through should have ended me. But they didn't end all of me. This is an chance to create a new me that's more of what I like and less of what I don't like. When everything falls down, it's an opportunity to rebuild.

Tuesday, February 28, 2012

Faith in sickness and pain

When we talk about faith, it doesn't have to be about the divine. Regardless of what faith your are, or if you have no religious faith at all, a chronic illness can really test your beliefs. I'm on the fence as to whether there is a God, or gods, or whatever. But that doesn't mean that I have a lack of faith. Faith is still fundamental to human existence. I see faith as the absolute confidence that something is true, even if it hasn't come to be yet. Faith to me doesn't even have to be spiritual. It can be faith that the electricity will work (the bill is paid). All types of faiths get challenged in sickness and pain, and there are several ways to respond. I choose to respond in the way that best benefits the situation.

I have faith in humanity, and faith that people are basically good. Do I know that stranger is good? No... But I believe they are until they give me proof otherwise. If that stranger proves to be shifty, I have all sorts of countermeasures I can use to protect myself. However, when it comes to my faith in my friends, I get evidence that could be seen as "otherwise." Getting sick isolates me from other people and makes it difficult for people to want to visit me. We have a strange aversion to illness and injury as a species. I've seen it happen to myself, to friends of mine, and in other cultures. Sickness and injury, at a primal, subconscious level, are a sign of weakness and something to be avoided. Going really, really primal, it means that you're likely to be picked off by the wolves. Other people will stay away because of that, and not realize they're doing it for that reason. That can really test my faith that people are basically good. We would all like to think that if we got sick or ill, people would rally around us, tend to us, makes us better and bring us back into the fold. But generally, that's not how it happens. I know there is the urge in me, if I can get better/when I do get better, to just leave this all behind and never talk about it again. Go back to "normal" and leave this in the past. I doubt I'll do that (I know too much to forsake those I'd leave behind), but the urge is there. So in this case, my faith is convenient and sometimes contrary to evidence. I will lose faith in that stranger the moment they make a untoward movement. I will keep faith in my friends even with evidence to the contrary, because I prefer keeping my friends.

My faith can be faith that my body will be in similar condition tomorrow as it is today. It can be faith that the floor will be there when I put my foot down. It can be faith that what I'm feeling is real. All of this gets thrown on its head in sickness and injury. Where I think the floor is may not actually be where the floor is. What I'm feeling, whether physically or emotionally, may be a complete fabrication of my nervous system and have nothing to do with reality. And when I wake up in the morning, it may be in a condition that takes me completely by surprise. It's very difficult to wake up and immediately be able to tend to some dire bodily need. And by dire, I mean things like vomiting, severe pain, and what I affectionately call the "splodie butt." But I have faith that my body will work anyway, because it's useless to stay up worrying---which will make me sick---over the possibility that I might be sick. I have no faith in my feelings. I always doubt them and test them against reality. I have neuropathy and PTSD. I know my feelings and sensations are often wrong. I have faith that the floor will be there. I'm not always right, but I'm good at managing the fallout when I'm wrong, so I don't mind keeping that faith.

I have faith that time will eventually change things for the better. Does that mean I'll survive long enough to see that goodness? No... But I believe it could be right around the corner. That's good enough. However, when things start changing from bad to worse, this really comes under fire. At some point, everyone starts to wonder, "Just how long can this go on? What did I do to deserve this?" Limits are strained, broken, or downright obliterated. That can easily be seen as evidence that things are not going to get better soon enough. But I've got to hold on to that faith anyway because the alternative is worthless. I want to be someone who fights until I'm absolutely overwhelmed. I've been at that point where I was so sick I didn't know what was going on, and a team of doctors was fighting to keep me alive. I have sworn to myself that no one is going to be able to say I gave up easy. If my death is anything, I want it to be respectable. And I have faith that I can keep that promise to myself. Is that true? Who knows!? And it doesn't matter. The faith is what's important.

Do I have faith in a benevolent spirit that has some concept of sin and holiness? I don't know that that's true. I do, however, have faith in mystery. Some things work out and we have no idea why. Some things don't work or work only sometimes and we don't know why. There are some things that only work when we're not looking at them and we don't know why. I have faith that there are bigger and stranger things out there than my little mind can comprehend. Could that include a benevolent spirit that has some concept of sin and holiness that is watching over me? Sure! But does it matter? If it matters to you that you go to Church/Synagogue/Mosque, then it matters to you and that's good enough. Me, some days the ritual of prayers helps. Other days, I think if there is such a Higher Power, we're going to go a few rounds before this is all over (so it's more comforting at such times to think such a being is impossible). Some days I think this is all there is. Some days, it's downright spooky. Here, my faith is complicated, complex, and I'm not even sure I understand it myself!

So faith can take many forms, it can wax and wane, and it can be clear as mud sometimes. It's still a human activity that we all engage in. It can be mundane or divine, metaphysical or physical, and everything in between. Injury and illness, pain and sickness, will test faith in a number of ways. We struggle to hold on. Sometimes, we find we have to let go. But I try to do so in ways that enhance the situation rather than make it worse. Sure, that means biting the bullet or dealing with upsets, but that's life, right? We pick ourselves up, have faith in a number of ways, and keep going. How's your faith today?

Monday, February 27, 2012

Why dwell on failure?

"I've set my teeth," is an old family saying meaning: to decide with amazing stubbornness. I may get knocked down. I may wail and despair for a moment or two. Then I set my teeth, figure out what's next, and get on with it. I refuse to spend my life feeling sorry for myself. It gets me nowhere. Yeah, it's bad. But I've gotten over that. It's old news. It was terrifying at first. Nowadays, the story is boring. I've told it a million times. Yes, I have a rare and complicated condition that makes living very tricky. But, I'm living aren't I? I can still contribute to the world in a meaningful way. I may accomplish that in a completely unorthodox way, but there is honor in being a trailblazer. This is certainly not what I thought I'd grow up to be. But what it has turned out to be, I'm making the best of.

We're taught in school that getting the right answer is the all important thing. The kid that fails is the dummy, the slacker, the good-for-nothing. There's a right way and a wrong way and the wrong way is to avoided at all costs. But that's not how the real world works. In the real world, often there isn't a right answer. In the real world, sometimes failure is the best thing that can happen. In real world stories, they all run essentially the same way: "I thought this one thing was going to happen, then something completely different happened, and it all turned out like this."

I thought I was going to have my career, get married, have kids, deal with the problems of parent teacher associations, deal with other soccer moms, get divorced, and figure out how to be an awesome single-parent household. Maybe getting remarried later down the line when the kids are older. That seemed probable to me. Getting disabled at such a young age as to be considered "Retired" by the Social Security Administration (and having the body of a retired person to match)... No... I never did think of that being in the cards. Who would?? I had dealt with a 3 year knee injury as a teen. I was no stranger to chronic health issues. But I figured every problem had a solution, right? No... there are still plenty of mysteries out there. We know oh, so very little.

These days, I've learned to linger on the failures just long enough to figure out what went wrong. I take responsibility for my part, but I don't beat myself up about it. Failure is usually memorable enough without additional self-abuse. I figure out the past, and move on. Sometimes I need a rest, so I can find a new approach for the future, and then go again. If I'm set on my goal, I try to exhaust all available avenues, and make new ones if I have to. Time will also present opportunities that didn't exist before. And I don't have to have faith that it will all work out, because that's not the point. The point is doing the best with what we've got.

As children, we have dreams. Then, as we learn, we see how our dreams were unrealistic, born of ignorance, and need some fine-tuning if we actually want to make them come true. This happens time and time again. We think one thing, then we test it against reality. The outcome may be a total surprise, or it may be what we expected. Most of the time, it's a mix of both. We take this new information, we think new thoughts, and then we test those against reality... and so on. The right answer isn't what's important. Knowing what to do when we get things wrong is.

However, we don't teach what to do when things go wrong in our schools. We say: study, memorize. If you're wrong, you're a failure and need to be held back until you can get it right. But in the real world, sometimes that's impossible. I mean, yes, you can study your little heart out and memorize all sorts of things. But sometimes, we're in an area where there's little study and we don't know what's right from what's wrong. Sometimes, we're in a situation where there is no right answer. And sometimes, the answer doesn't matter so long as it works.

I set down certain principles for myself: I must do my undertaking legally and honorably, because I like being able to sleep at night at look at myself in the eye in the mirror. After that? It doesn't really matter. It may take a long time. It may take multiple efforts. It may take an unorthodox route. (Can you imagine having your holistic doctor calling the ambulance to take you to the western hospital? That was my first clue...) But this isn't for a film crew. I'm not on a reality TV show. I'm just a gal living my life. That's messy sometimes. This isn't about perfect, so it's not about failure either. No one is handing out a report card at the end of my life.

What matters is, after my principles are met, am I okay with how I'm handling my life? Do I really need to be doing what I'm doing? Do I need to be doing it in the way I'm doing it? How does it matter to me? I'm the one who has to suffer the consequences, so these decisions are my responsibility. And yeah, I'm willing to bite the bullet that sometimes, I'm going to screw up, things are going to go wrong, or the unexpected will happen. That's life! There is no deserving or not deserving in there. It's only in story books that wizards appear to tell you you're the chosen one and here's your life's path. In the real world, most people make their life path by just setting off in a direction.

So if it's not about right and wrong answers, but results... And if it's also not about deserving or not deserving, but getting the job done... What is it I want of my life, that I think is attainable? Let's go for that. Is it going to be scary? Absolutely! Are there going to be hard times? Like we can't imagine. Are we going to encounter failure? For sure. But all journeys have these things. You'll have that on a job this size. Every great success has a heap of mistakes in its past. So why dwell on failure?