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. ;)

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!!

Myth Mugshot Contest -- Medical PTSD

The only real way to combat myths, misconceptions, & stigma is by raising awareness and sharing what is real: facts, stats, info, and narratives. This is exactly where Health Activists excel and align. No matter what your condition or health focus may be - you are dedicated to filling in the information gaps where stigma. That's why we've created the Myth Mugshot Contest.

So often, patients and caregivers are labeled (or at least feel labeled) by their health. Symptoms, diagnosis, treatment, and other things that go along with having (and fighting for) a health cause can open us up to judgment from others. But, at the end of the day, no one can label you - only you know yourself and what you're going through. Only you know which myths are myths and which misconceptions are outdated, off, or just plain wrong. But instead of dwelling on these labels we so often hear - we're doing something about it.

Let's play off of that idea by sharing what is real, true, and correct - and labeling ourselves with that instead.

This week we'll be sharing Myth Mugshots - where members of the WEGO Health team share one thing we think is true, important, and will affirm Health Activists and patients. Then, next week, we hope you'll do the same. Share a picture of yourself holding up a piece of paper that tells your truth. Think of a common myth, misconception, or discouraging thought and reclaim it by writing down something true or a fact about you, your health condition, health community, healthcare, or patients in general.

Now - share your photo! Add it to our Facebook wall and have your friends/followers "Like" it. The photo will the most "Likes" will get a feature on our blog, a highlight on our FB page, a feature in our June Newsletter, and a WEGO Health T-shirt (here's what they look like).

Looking forward to your Mugshots and seeing your mugs as well as your truths. Feel free to invite your community members to make one as well. We'll post our team Mugshots this week so you get the idea - and then you can start posting your pics next Monday, May 21st and having your friends "like" it. We'll pick the winner on May 28th.

I've written about Medical PTSD before. It's something that is very common among people with chronic illnesses. Too often, we are doubted, and our very ability to judge reality is called into question. We know from psychological studies done on other at-risk groups, that disbelief of our situation, of our struggle, caused depression, shame, and low self-worth. We become unable to view ourselves as in control of our lives:

"Our results show that perceptions of unfair treatment, like other chronic stressors, are psychologically burdensome... Many... suffer emotionally because they are unable to view themselves as efficacious and competent actors when treated with suspicion and confronted with dehumanizing interactions." Keith VM et al (2009). DOI 10.1007/s11199-009-9706-5

The easiest thing for a doctor to do is not treat. The shortest sentence in the English language is: "No."

When I'm not believed by a doctor, it's almost an instant panic attack. See, I sat alone, for years, in excruciating chronic pain. No one had to treat me. No one did treat me. And when my pain finally was treated, with an electronic device, I was the only one in the study to use it at maximum strength. My migraines could still shoot past what the device could do. I floored doctors with my ability to act as if nothing was going on, as they turned the juice up to 20 milliamps of current, direct to my Occipital nerves. They could make me go back there again, simply by saying, "No."

Doctors are the gatekeepers to treatments, advanced medications, and nearly all methods of symptom management. They mean the difference between living life, and enduring torture. Plain and simple. Is there any wonder, then, that chronic illness patients are walking around, traumatized?

One of the therapy methods for treating PTSD, is re-establishing the patient with a sense of safety in their own body. Chronic illness patients don't get that safety. It's our own bodies we need to be saved from! To quote a pretty hard-core rap song, by Rage Against the Machine, "There'll be no shelter here --- the front line is everywhere."

And other things have happened. Things I still have trouble writing about. I was hurt. I told him to stop, and he didn't. No one else in the room stopped him, either. My screams were heard three floors down, in the pharmacy. They almost needed pliers to remove the needle from my skull, he dug into the bone so deep. No, it wasn't sexual rape. But it was a violation of my body, all the same. It's perfectly normal to be a bit bent out of shape around doctors after that. Other people have stories like this, and worse.

I tried for years to ignore just how badly I was traumatized. But it came out in my behavior. It come out in an overwhelming sense of doom, that would leave me paralyzed and speechless. It would come out when small things when wrong, and I'd freak out like the world was ending (because, for me, it had been close to true too many times). I would assume I was inadequate to meet the challenges of the situation, and navigate them safely, because too often in the past, this was correct. It wasn't until my brother pulled me aside, and identified it as PTSD, like his military PTSD, that I realized what was going on.

Even still, it wasn't until my health was on the line (again) and I absolutely had to go back to the doctors, that I sought out treatment for my PTSD. I tried to do it on my own at first. I made it through the doctors appointment. I was polite and did everything right. Then I lost my $#!+ in the parking lot, after returning to my car. I broke down in near-hyperventilating tears. Nothing in the doctor's visit had gone wrong! But I was still inconsolably freaked out. I knew then, I had to get therapy before I started trying to do this again.

Things have gotten much better since then. I'm on medication, (or what I like to call #headmeds) which has helped significantly. I'm on a long-acting anxiety medication, and I have short-acting anxiety pills for breakthrough panic episodes (now fewer than 3/month!). I have my symptoms managed, and my success with doctors over the past year is not small feat (including withstanding an awful situation at the University of Colorado). Talk therapy, including EMDR, had a lot to do with that success. The doctors and counselors over at Boulder Mental Health Partners have done a wonderful job. (And it sure does help that they don't have stuffy medical offices and don't wear lab coats!)

I will have this the rest of my life, no doubt. But as I get older, those wounds will heal. I can still be triggered, but as time goes on, those triggers should fade. There is always the possibility of future trauma, but that's true of any human activity. I will face the situation as best I can, and worry about picking up the pieces after. I don't have to try to anticipate every possible bad thing that might happen. I'm capable enough to be able to think things through in the moment. And if I'm overwhelmed? I can always return to therapy.

PTSD is very real. And you don't have to have been in the military, to suffer from it.

Mental Health Month Blog Party! Recognizing Good Mental Health

I know I said I was going to to a Twitter & Tumblr Roundup today, but I completely forgot that today was a scheduled blog party (#mhbogday) for the American Psychological Association! Their challenge: How can you help people recognize the importance of good mental health, overcome stigma, and seek out professional mental health services when needed? Well, first off, I think that mental health is something we shouldn't just consider when it's needed. Mental health is like physical health. We all participate in mental health exercises, we just take most of them for granted. We can enhance our mental health with training and guidance from professionals, no matter what condition we're in. And most people have a "non-serious" form of a mental health issue, and manage it successfully all their lives. There is nothing about mental health that we need to be ashamed about.

Like physical exercise, most people get their mental health from regular daily activities. We engage in routines and rituals that help calm us with their familiarity. We do our morning routine before work, we check off each item in our routine as we complete it, we head into our day knowing we have started off on the right foot by doing all we're supposed to do. This process is so unconscious that we don't even notice it. But when our morning routine is upset, when there's some emergency that interrupts us, boy can we tell in our mental state! Things feel discombobulated, we feel out-of-sorts. Our day moves forward, but we're a little on edge, because our morning mental routine was thrown. We become aware of how important this habit is to our mental health.

Similarly, rituals like birthdays or going to worship, also help us feel a sense of normalcy and a connection to the flow of life. We take these things for granted when it comes to our mental health, when we engage in them successfully. But we notice how much they help our mental state the moment we can't participate. Being too sick to enjoy a birthday, or missing mass that we regularly attend, can upset us deeply. This makes absolute perfect sense! We look forward to these activities! Marking milestones helps ground us in a sense of accomplishment; they remind us of the BIG picture. Rituals like worship and holidays bring tradition and the past into the present; again, they remind us of the bigger picture. These things comfort and console us. When they're present, they help our mental health. When they're missing, we feel it.

As with physical exercise, we can add mental health exercises to our lives to help bolster our overall mental health. Professionals can help by teaching us new techniques and giving us new tools that we can then use in our every-day lives. It doesn't matter what shape we come into walking through the door, they can help improve our mental health. At the very least, validation from the professionals that we're doing well is benefit enough! But what is true of most people (myself absolutely included), is that we've grown up the best we can, but we've picked up a few issues along the way. We may have gotten them early (like childhood), or we may have gotten them through just trying to survive life (medical trauma, Katrina, 9/11, death in the family, victim of a crime). There is no such thing as "battle hardening." Eventually, life gets to everyone. There is no shame in this. And mental health professionals can help us mend the areas of our life where we are wounded in the soul.

Mental health issues can be no big deal, like a fear of spiders. That's not to diminish anyone's fear of spiders! But a fear of spiders can be managed by avoiding them as much as possible, not watching films that use spiders as a theme, having your house or apartment spayed with a chemical barrier, etc. A "serious mental health illness" is a legal term (from the Department of Mental Health and Substance Abuse Services is in the link above), and basically means severe impairment. This affects less than 5% of the population. Most people who use mental health services, like people who use physical health services, do it for a condition that is manageable. Yes, flares can happen that upset the regular flow, but on the whole, the symptoms do not interrupt life. Non-serious mental health illness is just like chronic physical illness. Most people have it, and you'd never know it unless they told you. It is nothing to be ashamed about.

Me personally? I've mentioned here that I have PTSD from my medical experiences. I can have panic attacks trying to see a doctor. It's nothing personal: I don't like doctors. I've been treated horrifically, and I've nearly died twice: once from an adrenal crisis when my blood pressure bottomed out, and second, from a MRSA infection following my surgery. It would be abnormal to go through those situations, and not have it affect your mental health. So, yeah... I'm a little nuts. I'll own that completely.

I also have very rapid-cycling hypomania and depression as a regular function of my migraines. That's what happens when your body dumps its supply of serotonin from the brain and blood. The only thing I can do is hold on to the best of my ability until it passes. I have symptoms like a visual aura, and ways to watch my behavior, that let me know when these moods are coming on. I have tools I've learned, and management techniques I've picked up (never go shopping when in hypomania---everything looks like a good idea!) to keep me safe. I'm on a long-term SSRI medication (#headmed) that works well enough, but it certainly doesn't do a complete job. Hopefully Big Pharma and science will come up with some better answers, soon. Until then, I manage well enough, and things have gotten much better since I got pain control.

We are making amazing technological advancements in our understanding of the brain, and how it functions. From this, we are learning more about all ranges of mental illness, from the mild to the severe. Mental illness is nothing to be ashamed of, whether you were born with it (and therefore had no choice in the matter) or picked it up along the way (like a bad flu or a broken bone). It's not a sign of weakness. It's a sign of survival. It's the wide range of normal, human behavior. Our mental health is like our physical health---and we should take good care of ourselves! This includes check-ups with a doctor (even if it is just to tell us we're doing fine). We can raise awareness, and take away some of the #stigma, so that people who need help, aren't afraid to get it. Be proud of your mental health! We all have scars...

#HAWMC - 6 sentences

Today's prompt: "Six Sentence Story. What can you say in six sentences?"

Half of the population has a chronic illness. Of that half, over one-third have a disabling condition, 47% are in chronic pain, and only 4% have a condition that is visible. These numbers do NOT include seniors: 90% of seniors have a chronic illness, and 52% of seniors have a disability. HEALTHY PEOPLE ARE A MINORITY. We chronically ill folk do not need to feel ashamed, or think of ourselves as "less than." The truth is chronic illness comes into everyone's lives eventually... one way, or another.

#HAWMC - Day 23 : Writer's choice, Surprise road trip [late entry]

Today's prompt for day 23 of #HAWMC is another writer's choice! I need to be good about finishing the challenges from here on out because my last "get out of blogging free" was taking up by bad network issues last night. I had a picture of my post-it and everything. Had a blog post ready to go, all I needed to do was upload it. And then network fall down go boom. But the bigger thing is, I got roped into a surprise road trip. I'm absolutely overwhelmed, but I'm keeping my head above water... It's been awesome and I'll have more to update later, but right now is check-out! Yikes! lol Aaaaand... I couldn't post this on time. I have a good excuse, however.

I will accept that I did not complete the challenge as specified. That's okay. I can try again next year! Anyway... what came up is I had a spur-of-the-moment opportunity to visit Mesa Verde and the Dine and Hopi reservations. While we was there, we made some really good friends, and an Elder blessed me. I'm okay with not making the finish line this year for that!

I got to meat some distant cousins (by marriage) who live on Second Mesa. I got a HORRIBLE sunburn, like a silly Bahana (outsider), but that earned me some pity and I received an aloe plant to take home with me. I found out some great information on traditional Hopi art classes that are being held that I can take. I am restricted on some classes, however, as I am not initiated into Hopi ways. But I should be able to learn some other crafts that have always fascinated me. I want to be able to make those baskets that are so tightly woven they can hold water.

I also want to find some way to share my strength with them someday. (I also don't want to stick my nose where it's not wanted, so I need to be respectful in this.) The reason for this is something one of the elders said to me. We were sitting side-by-side, and had been laughing about naughty things (old men always like to tease the girls). We settled into one of those strange, quiet moments that happens after a good laugh. He hung his head, in a despair that I completely recognize, and said quietly, "We have it hard out here." And I could see that it was true. Not for the poverty or the living conditions, as most tourists would expect.

What I saw was that their lives are hard because they have this amazing, rich culture and way of life that's been almost completely obliterated. It's in revival now, but just like I'm trying to rise from the ashes, I know it's not as easy as taking back what you lost. In a way there is no going back. There is also a horrible pain that lingers after great suffering---a kind that can cripple a soul. It can make us feel isolated. It can make us mean. It can put walls around our heart greater than even George R. R. Martin could imagine. Healing takes a long, long time, and even when completed, it leaves scars.

I feel so honored for the time I was allowed to spend there. Though I do feel terrible for not meeting my obligations for the blog-o-thon, I feel it was worth the sacrifice. I would post some pictures, but pictures are not allowed in their culture. But I did see this posted in one of the art stores. The added caption was "Hopi Police."

#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.

Responsibility and self esteem

Pushing the Limits, bronze sculpture by Gregory Reade

As I've slowly begun to strengthen, as a result of physical therapy, I've noticed my mood increase considerably. But it's not from the physical therapy, itself, per se. It's because I'm able to do the little things again. You might be amazed by these little things that make me so head-spinningly proud; they're very mundane. But they're things I can do that allow me to be more responsible towards myself. THAT is what's helping my mood. I'm able to do simple things that are a little more responsible, and each time I'm able to add a "good deed", my self-esteem grows.

I have enough energy to fix a meal and put the dishes away afterwards! I can also do a little spot cleaning, so that you'd never know something was cooked there. I can make meals from (relative) scratch. But for years I had to rely on microwave food because it hurt to stand that long. The bottom of my feet would catch on fire withing minutes. I even kept a chair by the microwave so I could rest. Now I can stand long enough to brown meat, make my sauce, finish the pasta and combine it all together. I don't have to rely on frozen food. That's HUGE, and probably a lot better for me nutritionally.

My car is clean. Before now, it was too much to ask me to bring the mail in with me when I left the car. It was too much to ask after being out and about. Whenever I was getting home, I was always near exhaustion or in pain. Maintaining a clean car doesn't fall high on the priority list. Open mail and magazines piled in the passenger and back seats. About a month ago, when it first started getting nice, I was able to clean out snow-drifts of paper. These days when I get home, I don't have all that pain. It's no problem to grab a few extra things on my way inside and maintain the cleanliness of my car. My hands aren't on fire or aching from the micro-vibrations in holding a steering wheel. Beauty!

Best of all, I'm pacing myself well enough that I haven't reaped enormous costs on the other side! Talk about being responsible! You mean I may actually have a handle on this bag o' bones? You mean maybe I've learned how to read these wacko, random symptoms well enough? Have I really learned how to recognize when I need to rest and when I can push it, so that I can make improvements to body? Wow. Wouldn't that be awesome? Sure, I could push my limits before, but there was always hell to pay on the other side. When we're in the grips of chronic illness, anything we do is robbing Peter to pay Paul, and Paul takes his interest in pain. But now, it seems that grip is loosening on me. Now I push a little, ease off when I notice the fatigue creeping in, I'm able to keep myself uninjured. It's sad that my body is such a dangerous place, but when was the world safe? Perhaps I'm learning to manage anyway, and these exercises will give we more wiggle room moving forward!

I do hope this trend continues. I hope it's not a fluke of the incredibly dry weather we've been having. I hope I'm actually getting better at these things. Because each time I'm able to do one of these little responsible things, a little voice chimes in my head, "Oh, look at what a good girl you're being! You're making a meal like a really-real adult!" or "Wow, look at that, girlfriend! You've kept your car clean for a month now! Fierce!" or as I got to tweet earlier: "#PhysicalTherapy went well today! I got to #levelup & I'm now doing more difficult exercises. Woot! #IamMighty Need a nap low. Lol" You know I'll be prancing like a peacock when I can actually hang my clothes up, rather than just moving them from the clean basket to the dirty basket!

And you may have noticed it, but I didn't talk about this improvement for a month. I didn't want to jinx it. There are so many failures---of drugs, of therapies, of professionals, of ourselves---that we encounter as the chronically ill, that it can be really difficult to believe in something. However, I must admit that my life has improved, maybe not dramatically, but certainly fundamentally. I've been able to do so many of the little things I usually just ignore, guiltily. Now that I can do them again, it's like a weight has lifted. I'm being responsible, things look better, order has been restored where there was once chaos.

Let there be more of this, please!

There is no Over, only Through

For the folks who aren’t chronically ill, think of every time you’ve been injured or severely sick. Perhaps a broken bone or pneumonia landed you in the hospital once. There were doctors and medications and instructions. You did everything they asked, all the while upset that you had to deal with this (rightly so) and wondering, “When, oh, when does it get to be OVER?!” Imagine that time. Remember being stuck in it, and all the things you couldn’t do, all the help you had to ask for, how much of an inconvenience it all was, how people had to be patient with you…

Now imagine all that, but knowing that it’s never going to be “over.” It’s never going to get better. That your body will only get worse given time. Those crutches are staying. Those medications are part of your life now. The doctors and staff at the ER will know more about your life than your hairdresser. You’ll actually hear those terms enough times to know how to pronounce them. People will stop being patient and wonder why you haven’t learned to live with it yet, even though the symptoms feel as fresh as day one, every time. Vomiting always feels like vomiting. Kidney stones always feel like kidney stones. What we do get better at, in the long run, is getting angry at it.

Our disease (literally dis-ease) is something we hate about our life. It’s like being shackled to a monster. We have to drag this ugly, demanding thing around with us every where we go! It’s never not there. We can sometimes forget for a little while (#epicwinning), but it always comes back. We hate it about our lives, and we hate it about ourselves. Even though the disease may be the responsible party, we, the person, have to take responsibility for it. “I’m sorry, I tripped over my disease. I’m sorry, my disease is throwing a tantrum. I’m sorry, my disease is a jerk and won’t let me come out to play…” Pretty soon, I feel like the jerk having to explain all the time…

But it’s really, really dangerous to look at my disease this way. Pretty soon, I’m hating me. And that’s the least constructive place I can be.

My neighbor is involved in mix martial arts and she has inspired me. She's a cute little thing and you never would guess she could kick your butt. I was looking at some of her videos from a recent tournament. How those ladies compete is not a natural way to move. Watching the competition videos with her she would point out her mistakes, "now if I was paying attention there, she wouldn't have gotten me into that lock...". After the tournament, she had mean bruises and a few nasty bumps on her head. But these injuries didn't make her a victim. They made her a bad-ass.

Pain and suffering isn't always a negative thing. If it is pain and suffering we have chosen to accept (as, say, a means to an end) then we're a lot less likely to feel tragic about it. It's part of the process, right? Just the price of admission... We all understand that good things generally have a price tag stuck on 'em in some way. Whether it's enduring hundreds of class-hours for a degree, or working your way up the ranks in the military, or meticulously watching your weight to look good for your 20th high school reunion, we understand pain is a part of life. So isn't it reasonable, then, to say that the pain and suffering of my disease is no different? Pain is pain. It's the same nervous system. It's the same brain activity. So why would the bumps and bruises I get from one activity could be seen as triumphant, and the bumps and bruises of another activity seen as evidence of loss? They get you the same funny looks at first... "What the hell happened to you?!"

I have a scar through my eyebrow from a freak croquet accident (a long story for another day). The doctor who stitched me up told me to tell everyone I was on a secret German fencing team, and to graduate, everyone must leave with a scar. This one is mine. A scar on a woman's face on its own could be something to really be ashamed of, but add the cool story and it becomes mysterious and romantic...

Part of the problem is the frustration. I used to be able to walk just fine, thank you very much. I could leave my car at home, walk 5 miles, go shopping, and walk home again... just because it was a nice day. Now I have to hope that a nice day outside coincides with a nice day inside my body so that I can enjoy the day! And I have to drive. And sitting for most of the time is mandatory. Bah!! That certainly takes the fun out!

I can compare my life now to the life I knew before I got sick, and it will fall short in a lot of ways. My dreams at night tease me with visions of a body that follows my commands, instead of commands me about... I can dwell on all of that and be miserable.

Or, I can envision that I am on a quest to earn my black-belt in illness arts... That the bumps and bruises are testimony to learning process and something to be honored by rather than ashamed of. Yes, I am dealing with a storm of invisible problems that makes it difficult for other people to have sympathy for me. But I don't look sick? Thank you! I was hoping it wasn't immediately obvious. Just because other people have difficulty recognizing my problems and accomplishments, does that mean I should devalue my efforts too? Absolutely not.

I may not be able to get over this. But I can find a way through despite it. I don't have to find the light at the end of the tunnel. I can BE the light instead.

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.

Management of symptoms = Quantity of life

Have you ever tried to stop yourself from coughing? It's really difficult. As a symptom, a cough is very urgent, very demanding, very insistent. You're going to cough eventually. It's just a matter of when. Try not to cough for too long and the gag reflex will kick in. Then it's vomiting and coughing. The body will have it's way. Why do I bring this up? Because I want to remind the people who don't have a chronic illness that you *do* know a taste of what it's like to walk in our shoes.

Imagine those symptoms dragging on... and on... and on... Like that lingering cough after a chest cold that just won't go away. Only instead of just the cough, it's the whole cold dragging on. No amount of willpower will make the symptoms go away. Try to force them back and they push back even harder than before. Get burned often enough and eventually, you learn. Something are just-out-of-bounds now. Oh you may be able to indulge every once in a little while, push past the safety zone a bit. But the costs are high, and that's a reminder that your limits are still there. You count your lucky stars for the things that you still can do.

In a situation like that, it's natural to get frustrated. It's natural to become impatient. It's natural to be fed up. It's natural to want to turn our face to the sky and ask, "Why me?!" It's natural to be frightened of what the future holds. I don't have a feeling of safety in my own body. There's always the thought that things are going to change, and not for better. It's happened before, it can happen again. Flares erupt. Bad days are bed days. It's natural to feel at the mercy of invisible, mysterious forces.

It's natural to not want to be alone. I don't trust my body to function. I don't trust my ability to take care of myself. Why? Because I have had things happen to me that were bad enough that I vowed, "Never again." I've been too close to the edge---where if I hadn't've been lucky, I could easily have been dead. It's just safer having someone else around in case of emergencies. In those times another person is a lifeline. In quiet times, at the very least they brings peace of mind.

But what I dream of, when I dare to dream, is a world in which I can manage my symptoms in private and just get on with my life. After that, all other things would be possible: a self-supporting income, expressing myself artistically, participating in life again. A world where I can take care of myself and regain my adult dignity. A world in which I can build towards my future. A world where I can contribute more than just words to my brothers and sisters out there. They're good words, but I know I'm capable of more. This isn't just a world where I have a better quality of life. I'm talking about a world where I have more hours of the day where I am useful---a greater quantity of life.

Why patience is a virtue...

[Part 3 of a trilogy, Part 1, Part 2]

There's a great greeting card flowing around the internet. Here's a censored version of it. Most people would look at this and laugh for the obvious reason. Everyone understands that we hate waiting. Places to go! Things to do! People to meet! My time is important! Yes, yes. Ha, ha. But hold on a second. When we rush things, is it actually easier for us to be successful? Does going faster actually cause less accidents? Are we able to see things clearly when we only see the briefly? Do we type things out correctly the first time, every time?

You may know this joke: A man is drunk. He's heading towards his car and accidentally drops his keys. So he starts looking for them... a block away under the streetlamp. A stranger, seeing all this asks the man, "Why aren't you searching for your keys where you dropped them?" The drunk answered, "Because the light's better over here..."

It does us no good to always be right. It does no good to surround ourselves only with the safety and security of what is known. We want to repeat our successes and avoid our failures. That's primal too. And it's scary to go into the darkness. It's scary to be unsure. Our autonomic nervous system actually goes into fight or flee mode. We're primed for action, but unable to take any because we don't know what to do. That's a tough spot to be in.

We need patience because success is not a straight line. The path from a to b is unknown. We may have a direction, but we have no idea of what life is going to throw in our way. We may have a goal, but we may have no actual way of getting there. We may have a map, but that's no guarantee the landscape is going to match. And acknowledging those facts, embracing our insecurity, and giving ourselves the time to be cautious are all important.

And we're not training our kids to learn how to have a willingness to be wrong. We're teaching them that there's right and wrong and you always want to be on the side of right. We've associated being right with righteousness. The person who is right should be given the authority. They know what to do. They're right.

This time.

But, as I've mentioned before, success isn't a straight line, and success isn't a destination either. It's not like you become successful and stay successful, never making another mistake again for the rest of your life. We can't hold on to success any more than we can always be right. And yet, these are the expectations and heroes that we parade around. These are the stories of rags to riches that we eat up with a spoon. S/He made it to the top and lived happily ever after. On the flip side, we have the shaming "s/he never really amounted to anything..." and "s/he never really did much with their lives...." We put such enormous pressure on ourselves, and we can be so mean to ourselves when we fall short.

I say let's put away the abuse and self-abuse and let ourselves be okay with our not-knowings. It's okay to be unsure. It's okay to be cautious. It's okay to dip your foot in to see if the bath water is too hot. It's okay to have to take time to figure things out. It's okay to need time to figure things out. In that time, it is appropriate to feel insecure. That is a perfectly reasonable response to not knowing something. It's not bad to realize our own limitations. To be limited is to be human. We give a patience to ourselves and others as an act of acceptance and forgiveness of our limits.

Edited by Brigg Badlwin

No such thing as a human machine...

[Part 2 of a trilogy, Part 1, Part 3]

We're trained very early on that to be wrong is to be bad, that we made a mistake, when we saw reality wrong, it's because there is something wrong with us. Getting the "right" answer and being able to show how you got the right answer is all important from the time we start school to well after we retire. But the truth is, no one knows what reality is. We're all observing this world with fallible human organs. We want to get things right so badly. We remember our mistakes so easily. This is a primal instinct. Figuring this stuff out is how we survive.

When a situation is new, we can feel overwhelmed. We can feel out of our depth. And we are so rushed in this culture that we never give ourselves time to acclimate. We want to jump into a situation and fix it now! But we're not giving ourselves time to learn what we're working with. We're so enthusiastic to show that we can do it, that we don't pay attention to what's going on around us. We're going so fast in our efforts to be wonderful, that we make simple, catastrophic mistakes. Our history is saturated with this behavior: Katrina, Afghanistan, Iraq (just to name a recent few).

I am insecure about my health problems. They're rare, they're difficult to manage, and they're interfering with my life in a major way. That's scary stuff. It's perfectly reasonable for my doctors to feel insecure too. But they have a culture wherein they always have to get the right answer or it's their @$$ on the line. The stakes are REALLY high for them. They have to have an answer, it has to be the correct one, and it has to make the patient better. When that doesn't happen, they freak out. They're out of their comfort zone of rightness. They "ran into the table" and the first person they're going to "scream" at is the patient. If the patient would just go away, the problem would go away. They never would have to face being wrong.

What a perfectly, self-sabotaging way to approach medicine. In this modern day of machine and perfectly pressed pills with the same microscopic amount... with all our amazing diagnostic technology that can see into the human body in ways we've never imagined... we've forgotten that medicine is an ART. With all these health programs and websites based on wellness, we've forgotten that people aren't one-size-fits-all. As a culture we've forgotten that what's good for your life may be bad for mine, and please mind your own business. We've place this expectation that because we have precision industry, because we have this diagnostic technology, because we've had all this very expensive education, that that somehow makes us immune to mistakes and immune to insecurity about the situation. Why?

Insecurity is okay. It doesn't mean there's anything wrong with us. It means we're in a place of learning. We need not view it as failure: to not know. We need not be afraid of this. That's where discovery lives. That's where wonder and surprise are. We need to not be so concerned with making reality match what's in our mind, and need to concentrate more on matching what's in our mind with reality. That takes humility. That takes vulnerability. That takes a willingness to be wrong. That take willingness to admit: there's no such thing as a human machine.

Edited by Brigg Baldwin

Sometimes insecure is a perfectly valid way to feel...

[Part 1 of a trilogy, Part 2, Part 3]

We don't like insecurity in this culture. It's a sign of not knowing. And if you don't know, well, how can you tell if you're wrong or right? How do you know what's correct and what's a mistake? How do you know what to think about yourself? Are your efforts good enough? Are you measuring up to the moment? What's the East German judge going to say?!?* Do I have any idea what's going on? Am I even seeing reality?

Have you ever seen a toddler run, without watching where they're going? Invariably they smack their head into some piece of furniture. Then they look at you as if to say, "If only you hadn't been there watching, I wouldn't have hit my head!!!" They are so angry in their pain, so angry that it hurts, so angry that it disrupted the fun they were having just instants ago...

We are all still that toddler inside. When we get sick, when our lives get disrupted by something we did not want, have no power over (besides mitigating the consequences, that is), when it hurts, we get angry. DO. NOT. WANT. It makes us mad that we have to deal with it. We want to escape it. We want a reason why. We can easily fall into blame-the-victim, both towards ourselves and towards each other.

But the truth is, just like that toddler, we can't see it coming. The future is something we anticipate, not something we know. Our incredible capacity to imagine is how we compensate for the fact that we're never really living in the moment. It's actually biologically impossible to live in the moment. It takes "it takes the brain at least a tenth of a second to model visual information." That is, it takes 1/10^th of a second for the reality in front of us to reach the vision center of our brain and tell us what we're looking at. Think about this: you're driving in your car, the world is moving around you, things are happening, and you're watching the road. You look away. You look back. Suddenly you have to slam on your brakes. Did you miss seeing the car in front of you? Yes, quite possibly. That could be entirely true. If the movement happens in that 1/10^th of a second window...

Let's think about that in terms of baseball. "At 85mph, it takes a ball approximately .425 seconds to go from the pitcher’s hand to the hitting zone." That's approximately 4/10^th of a second.

More math, the average human reaction time is 3/4 of a second. That’s .750 seconds [7.5/10^ths of a second]. What does that mean if a player simply reacts to the ball from the time it is released? That’s right, if you are good at math, you figured it out. Go have a seat on the bench, strike three went right on by you before you could even swing. Hitting is timing. A batter must begin his swing at the same time the pitcher begins his motion. There is an old saying, and I am not sure which hitting instructor first said it, "When the pitcher shows you his pocket, you show him yours." In other words, when the pitcher kicks his front leg up to begin his delivery to the plate, the hitter should begin his "cocking" or "pre-swing" motion, preparing the bat for a swing at the ball. If he does not, it is physically impossible to react in time.
Be a Better Hitter

We anticipate the world. All the time. For survival. For sport. But sometimes, when our mind is calculating what that future is going to be, we get it wrong. We don't see the table. We strike out. Something happens that we had no intention of happening. We don't get that job. We don't get into our choice of school. We can't afford to live in that neighborhood anymore. We're sick with a disabling disease. Life happens and throws us off our game.

If we're aware we don't have enough information about how to calculate what the future is going to be, we become anxious, worried, and frantic. Where do I stand? What do I do now? What's going to happen to me? My family? My love... Those can be difficult pills to swallow. But it can also give us a sense of wonder, surprise and magic, like not knowing the end of the story or watching a Penn & Teller magic show:



Why do we run from our insecurity? Shouldn't we acknowledge it? Shouldn't we stop for a moment and go, "Hey, I'm feeling insecure. I wonder what's going on here?". Why do we try to insist, "I'm okay! I'm okay! Everything's alright!" even though we're scared? Why don't we stop and identify what's making us insecure? Insecurity lets us know that we don't have all the information we'd like. It identifies places that we should investigate, rather than avoid. It lets us know where the mystery lies.

*(Cold War Olympics humor)
Edited by Brigg Baldwin

You Are Not Your Disease

If you have a chronic illness, you've probably heard this at least once. "You are not your disease...." It's a trite phrase that psychologist learn in their training on how to deal with people with chronic health symptoms. But it's so condescending. I never introduced myself as, "Hi, I'm Autoimmune Hypophysitis, glad to meet you." I know I'm not my disease. Telling me that isn't doing any good. It makes them feel better because they've done their duty, so to speak. But it's not actually constructive information. Here's what I think they're trying to say: "You do not need to be ashamed of this."

They mistakenly see our griping as a cry for pity. We're not looking for that. We're looking for acknowledgement of hard work done. We're seeking recognition of the struggle we're going through. I mean, saying I'm not my disease is like saying I'm not the rain. Sure! I know that. But I still get wet. It's still miserable to stand in without an umbrella when it's pouring down. I still have to navigate around puddles and jump aside when a car splashes one onto the sidewalk. Managing my disease is hard work! That is why I'm whining.

I am not my disease, but this disease is obnoxious. It stops me from doing what I want to do. It stops me from expressing myself in ways I want to. It stops me from going the activities I want to be involved in. It stops me from spending time with my family and friends. It stops me from being the person I want to be. It stops me from having peaceful sleep. It stops me from working. It has changed me to my core. I am learning to be an entirely new person, one I never dreamed of being in my worst nightmares. That's rough and scary. I never prepared for this. I never thought this possible. I'm winging it and I have no idea if I'm doing a good job or not. And all of that is due to my disease.

Please don't minimize that.

Mistakes can be miracles

Dedicated to Donna Ricci

I want you to play a word game with me. Look at the word, "mistakes." Break it apart: Mis-takes. Miss takes. I made a miss take. I missed the take on reality. I took something else for reality that was off the mark. But... why do we all believe that this is inherently bad? Why is a mistake a mark of failure? It isn't necessarily. I have made several mistake in the kitchen that turned out *delicious* and I discovered a new fantastic recipe as a result, that I would not have found otherwise had I not erred. Mistakes aren't always bad. They can be beautiful too. They can be miracles.

You know the story... The scientist accidently left the petri dishes out overnight, uncovered, and mold started growing in them. But lo and behold, the mold was killing what the scientist had been cultivating in those dishes. This was a miracle discovery!!! This was the accident that led to the discovery of antibiotics. The scientist was Alexander Fleming.

We're taught a very bad lesson, that we learn very well, early on in school. And that is mistakes are failure, weakness, and to be avoided at all costs. But I'll let you in on a secret. Our school system wasn't designed to help kids learn. It was to train kids for the dull and boring, repetitive tasks that were necessary for factory jobs. That's right. Our school was actually designed to make kids like machines. Our schools are designed to make kids not think. They're designed to make kids perform. And for ideal performance, we ask kids to be perfect.

This is not only unrealistic and undesirable, it's completely unnecessary too. We use machines to do our dull, dirty, and dangerous jobs. If we need the action to be perfect every time, we use a machine to do that. If it's the same circumstance every time and we need that repeated over and over again, we use a machine. If we need the process to be extremely efficient, fast, safe, and so forth, we use a machine. We automate, and we have been automating since before the Roman Empire.

Why are we teaching our kids from an early, early age that getting things wrong is bad? That's something that simply isn't true! We're asking them to be inhuman when we're teaching them wrong is bad. "1200 years before Descartes said his famous thing about "I think therefore I am," this guy, St. Augustine, sat down and wrote: "Fallor ergo sum." I err, therefore I am. ... The miracle of our mind is not that we can see the world as it is. It's that we can see the world how it isn't." (Kathryn Schulz - On Being Wrong)

The miracle of mistakes is that it leads us to a place we weren't aiming on going. Mistakes lead us out of our known world and thrust us into discovery. Mistakes take us to a place we didn't volunteer to go, but not necessarily to a place we wouldn't choose to go if we knew about it. If we always stayed in our safe bubble of "what we know to be true," we'd never make any discoveries! If we never lost our way, we'd never find new places. If we never had accidents, we'd never know what's possible.

T'ain't nothin' in this world good or bad, but thinking makes it so.
We are dangerously in love with this idea of Rightness. We use our idea of Rightness as justification to take terrible actions against other people. "I'm right. You must do things my way." We use it to justify force. We use it to justify discrimination. We use it to justify taking money and property from one person or group and giving it to another person or group. Every human atrocity can be traced back to some jerk who thought only s/he was right and managed to get enough power to start inflicting that "rightness" on others.

Today, I'm trying to embrace my mistakes. I screwed up in the kitchen earlier today. I went to go fix my mistake and than I thought, No... I'm going to let this mistake happen. I'm going to see what's on the other side of me doing it this way today. I don't know that what I'm about to do is bad. So why not try it? The results weren't "fantastic," like some of my kitchen mistakes. But it was still delicious! I gave it a 3 out of 5 stars.

And that's the other thing: when I let go and relax into my mistakes, I don't give myself such a hard time about them. I don't beat myself over the head like I'm a bad person for making the mistake. I worry less about expectations and outcomes. It's exploration and experimentation time. It can be scary, sure! It's new. Scary can be part of that package. But so can thrilling. And it's dangerous to head out into the wilderness... out into Here There Be Dragons land. It reminds me of the Modest Mouse song, Dashboard: Oh it would have been, could have been, worse than you could ever know. But no one got anywhere by sitting at home on the couch.

Sometimes, those mistakes even keep us safe. Mistakes let us know that we've hit out limit. That we need to be careful. That the situation is more than we thought it was. One of the lessons I learned from watching Deadliest Catch is that "13. Not being cut out for the job isn't a bad thing." (me, Everything I needed to know I learned from Baring Sea fisherman..., contains language not suitable for work) Being a baring sea fisherman can kill you. When mistakes are made and recognized early, we may be able to avoid a situation where we'd really be beyond our depth (pun intended).

We need to end our love affair with Rightness. We need to pay more positive attention to Mistakes. If we do this, we will not only learn more, but we will feel better about it while doing it. What inspired this post was I said on my Facebook page that I was heavily medicated and no longer responsible for what I say. A friend I really admire made the comment, "*hits refresh repeatedly* Oh this should be good." Suddenly I felt intimidated! I was in the spotlight! And I thought, *EEP!* I got to mind my P's and Q's! But then I was all, No... that's the whole point, silly. Your mistakes are going to be funny & unusual. Go with it!! This post is dedicated to her.

How I came to learn I was disabled...

I am outraged by this article: A migraineur entrepreneur: yes, it can be done! This is another example of someone claiming disability and then setting an unrealistic goal of achievement, when by their own admission, they do not display the characteristics of a disability at all. It's the equivalent of saying Kate Moss is an average beauty, and all women can be her. This woman claims she couldn't work a full-time job but then goes on to say she managed 100-hour work weeks. Um... No.

I learned I was disabled when I went into a mandatory unemployment seminar. There, I was told by the leader of the session that if I'm not able and available to work from the hours of 9am until 6pm, I could not count that as a work day. That is, if I was sick in the morning and had to come in late, that would count against me. I went up to the leader and talked to him afterwards. I told him that I'd never been able to do that in my life. He said that I had been improperly collecting unemployment and I would have to pay that back to the state. He also suggested that I talk to VocRehab to see if there was any way to find a job that would work around my regular illnesses.

I went down the hall and I spoke with VocRehab. The lady there was very nice. She asked me, "Well, what can you do when you're sick?" I replied, "Sit in a dark room with no noise and pray for mercy? I get migraines." She pondered that a moment then asked, "When you're at your worst, can you look at a computer screen?" No. "Can you read a book?" No. "Can you answer the phone?" Sometimes. "Can you talk to someone in person?" Sometimes. "Are you in pain right now?" Yes. She looked at me blankly and said, "Yeah, we can't retrain you for any job that could handle that. You need to go talk to Social Security Disability."

I was shocked. I lived in Seattle at the time, and I was part of the IT industry. The culture there, thanks largely in part to Microsoft, was that 10am was a perfectly acceptable time to roll into work. My boss regularly didn't show up until noon. But it was also understood that we worked long hours and a speeds that put 3rd party companies we hired to shame. They had always been willing to work with me and work around my doctor and chiropractor visits, my need to end the work day early or start it late. As long as I put in my 40 hours, they didn't care. So I never knew. I never realized.

And then it all became moot as the migraines went daily. I had, sometimes, a small window of a few hours where I was not in pain. But mostly I was in pain, every day, all the time. Sometimes the pain would even invade my dreams and my sleep. It still does on occasion, like last night. My migraines are triggered by barometric pressure changes. Seattle was a terrible place for me to live. The constant rain six months out of the year was generated by low pressure systems sweeping in from Alaska. The barometric pressure was in constant flux, like a roller coaster: up one day, down the next. That roller coaster would manifest as a migraine.

At first, if I'm lucky, I'll get a visual effect: a little white dot, about the size a a pixel, starts to fly somewhere in my vision. It moves like a fly, but it's tiny, and bright white like it's made of light. In it's wake is a black tail. Then all the lights get brighter. All sounds get louder. It's as if someone is turning up the volume on the world. I can hear my cats walking on carpet and it sounds like children romping in piles of autumn leaves. The squishing of the carpet fibers make a crunching noise. With light, it's like when you walk from indoor lighting out into the afternoon sun on a snow day. The sudden light from the sky and the ground is too much for us. We squint. We recoil like a vampire. The day star is mighty. Headlights in the dark are like that to me. Throw on top of this mix the regular, base-line pain of the migraine... that pain is very much like your worst hangover headache. But add in there random spikes of pain that suddenly strike like an ax blow to the head. Thinking becomes near impossible in those moments. Parts of my language center will shut down so that it's difficult to remember even the simplest words. I'll have to say things like, "make the head hurtiness stop," because I can't recall the word "pain." Or I'll have to make new words like, "Where's the ca-chunka-chunka?" for, "Where's the stapler?" (because that's the noise a stapler makes). Oh, and I won't even go into the associated nausea & its consequences. Yuck.

Working? Not an option. Not even part time. I was offered a paying job with Wego Health to help manage their migraine community. They were fully aware of my migraine disease and were willing to work with me anyway. All I had to do was manage a small blog, log in to the system four hours a week. If I couldn't manage that some weeks, they would understand. I still had to bow out because I was just too unreliable at the time. Every day I was trying to make the pain stop or lessen in any way I could. That was the only thing that mattered. If I could get free of the pain, all things were possible. When I was in the pain, nothing was possible. Even with a prescription for oxycontin, I still had to go to the ER on average of once a month, because the pain got to more than I could deal with at home.

So when someone says: "In the very early days of my blog, I talked about how my headache specialist recommended I not work a full-time job right out of graduate school. My migraine episodes were frequent and severe enough that a 40 hour/week job was not for me---at least that’s what was suggested to me." And then goes on to say, "I spent the first few weeks of business working well over a hundred hours a week..." and, "I was in the shop from 9 until 9 every day..." I call foul. You have got to be effing kidding me. Do you not see what you even wrote??? Normal full time hours are only 40 per week. Not 9am to 9pm every day.

Unreal. And that this story would be promoted as a "you can do it too!" just breaks my heart. Something like that is difficult for the average person, let alone someone who really is debilitated from migraine disease. That they would set the bar that impossibly high from the word go and then claim that it was done by someone who was disabled? I'm only glad she was so boastful of her accomplishments! I would have been feeling pretty miserable if I thought I should have been able to do that too.

Real dreams and accomplishments are possible in disability, but not what this lady is talking about. When I am able to do the same, I will let you know how I got there. But in the meantime, caveat emptor---let the buyer beware. Not everyone out there is giving you the real deal. Whenever anyone tries to tell you, "you too can...", take a look at how they themselves did it and see if it's reasonable. Look at their actions, not their words.

My hair is on fire. I'm going to go put it out now.

Special thanks to Brigg Baldwin for editing.

Pain is torture

I may get myself in trouble for speaking out on this. It's going to be difficult to explain. It's about my relationship with my pain. It's about my relationship with narcotics. It's about my own fears. It's about how I don't know to talk to people about this stuff. *I* know I'm not an addict. *I* know my pain is real. I know there are dangers, but can't you see I'm already in really scary territory? The landscape is pain. The only question is: how much?

I'm a tough girl, but when my pain gets to a certain point, I know there is nothing I can do that will make it better. I know once it gets to that level it can sit there for months. It did this past year. I was stuck in bed for all of last spring. I started this blog to keep myself from going crazy from pain. I was so miserable, and I had to turn my thinking around somehow. So I forced myself to find the bright side and teach others how to do the same. I promised myself that I had to write positive, constructive, cooperative, empowering posts... Because I had to learn how to be that in my life. I had to hang on... somehow. I was trying to survive torture by my own body. I knew it would pass once summer hit and the dryness returned to the Front Range. I just had to make it through. The key to walking through hell is: don't stop.

Obviously, I made it through. But that's not entirely true. All of me didn't make it through. Each time, it's a little more innocence lost, a little more bitterness gained. I lose more confidence that life can get better. I lose faith that anyone in authority cares. I'm more shy. I'm more likely to keep you at arms length while turning on the charm. I'm trying to hide that I've become an Ice Queen. I don't mean to be guarded. I just know eventually I'm going to lose my $#!+, and I need to learn first if you can handle that. I need to know that I've earned your friendship so that I won't lose you when I lose ahold of me.

The pain I have to deal with scares me and rightly so. I can handle epic levels of pain and still function. But my pain can go beyond my ability to cope. There's that place where there is nothing but pain. It's hard to even have a sense of self because everything is pain. The pain is so big, it swallows all of existence. It's complete helplessness. THAT is what scares me about the pain: being put in a position where it would be difficult for me to save myself from a burning building. Being in pain for so long that it would be difficult for me to have the motivation to save myself from a burning building. You can't have experienced this level of pain or length of pain without wishing for death. It's just natural: passive suicidal ideation. I'm not going to kill myself, but I'm not going to stop the process should it begin naturally. Death does not look like a bad option when dealing with that kind of pain.

The problem is, the desperation of drug-seeking can look EXACTLY like the desperation of pain-avoiding.

It has been a struggle to get the medical community to agree to the point of medicating me properly. I continue to try to get proper treatment, and by that I mean that which makes me more functional, healthier, more reliable, more responsible. I see me able to take care of business because of those pills. I'm not looking to avoid reality. I'm looking to rejoin it. I want to beg of them: "Please let me have them!" But desperation, however valid, looks ugly. So I'm patient. I go through the proper channels. I try to earn care by building a relationship based on full disclosure and responsible behavior. There is no other option. But even that doesn't seem to work. Even when it's on a scan and the blood comes back in my urine, I get the snippy comment: "Well... here's what you came for..." in regards to the narcotics.

Yes, I came in for that. But legitimately. Honestly. For realsie. What do I have to do to be treated with some dignity? Yes, it is bad enough to require that drug. I'm sorry that it is. I'm sorry that I'm bothering you. I'm sorry that I have to be in this state. I'm sorry I'm powerless to overcome it. I'm sorry I can't think it away. I'm sorry I can't "positive attitude" or "clean living" it away. I'm sorry a few laps in the gym won't make it go away. I'm sorry my best isn't good enough anymore. It used to be. I remember it. I'm trying to get back there. But it's a struggle. And each time I have to endure another flare without relief, I lose hope in the fight. Yes, I covet those little pills. But not for the same reasons as an addict.

Are narcotics dangerous? Absolutely. So is prednisone. So is Neurontin. So is Advil. I'm on all of these. When any of these chemicals are used responsibly, they serve a purpose and they help. The help instead of harm. Or, at best they help more than they harm. Do I need narcotics? Depends on what level of functionality you think I deserve. If you think that my limiting my activity to 1,700 steps a day (by my step counter) is good enough, then no, I don't deserve narcotics. Do you think I deserve to be reliable enough physically so that I can work full time? Then yes, I deserve narcotics. Will taking narcotics make me an addict? Not according to the FDA.

I have to believe that it's possible for me to get pain control. I have to believe there is going to be some doctor out there willing to stand up for me and say, "Yes, give this woman pain control. We know her condition is crippling. She needs this. It is her right to have it. She can be trusted and believed. She deserves this care. I give my word as a physician that we know her pain to be real." I have to trust that this is just a "hurry up and wait" time. I have to trust that there is a light at the end of the tunnel even if I can't see it. I have to believe that. Otherwise I panic that there's no way out, no end. Those thoughts are anathema. I cannot let them in my head.

The pain is torture. Not just physical, but mental and emotional. If it were some useful pain, that would be one thing. But this is the pain of nerves dying. This is the pain of a nervous system disease we don't have the science to control yet. This is pain we have no other way to control.

Mercy, please!