May 8, 2008

  • it's your tomorrow

    Attack of the Show: Dr. Michio Kaku Interview
    Hi, guys.    I have received some very kind comments and messages since I got busy on this blog over the last month, and I wanted to say THANK YOU  , and I guess it would be cool of me to give you a little more depth.  Some of you know me from other blogs, most of you don't, and I daresay very few of you have a clue what really goes on my life.
    I am what I call a 'slow terminal'.  I have no prognosis and might live another 20 or 30 years as long as I really take care of myself, but that could all change any time.  I am immuno-compromised (it's not AIDS, please don't confuse that with lupus) and get sick very easily, my nervous system is involved so it's quite painful, my liver and spleen have swollen a couple of times which is scary, and I get sun poisoning just walking across parking lots no matter what precautions I take so I'm stuck indoors all the time.  I can't even begin to tell you how fun chronic fatigue is.
    I have lived 20 years beyond initial diagnosis, sometimes through some very terrible pain, and have survived some scary med reactions, including a very rare gadolinium contrast reaction during an MRI.  My biggest fear is infection from injury or illness, and the sun.  I have been able to sort of control flaring up for about a decade without a lot of major medical intervention, although I'm pretty sure I would not be here now if I hadn't received medical intervention in my 20's.  I have confirmation that the disease is still progressing, as my soft tissues thicken and lose elasticity, which kinda sux because soft tissues are what hold the skeleton together properly.  I have experienced inflammation in the protective tissues around my lungs and heart, throughout my lymph system, and in my nervous system.  My brain was affected 4 years ago during a severe viral illness in my nervous system.
    I was told by one doctor I'd be blind by 40, and so far I'm not.  When I was first diagnosed I was nearly crippled and extremely ill and couldn't even imagine making it to 40, and another doctor concurred, indicating I would probably wind up in a nursing home at a young age.  When you google for prognosis on lupus and see it broken down into percentages and quick summaries on symptoms, you are seeing estimates from poor record-keeping.  It almost comes across as a *fun* little disease to have because some of the sites try so hard to make it a non-terminal illness.  I've learned from experience that medical facilities no longer keep lifetime records on patients or follow their progress *unless* they are part of a special study.  I personally know several people with lupus, some severe, some mild, some have passed on at a younger age than I am now.  I believe I have managed to walk a tightrope through a more severe onset using my wits as much as anything.  I have managed to avoid surgeries, long term steroid use, and other nasty high risk interventions.
    When you live every day of your adult life with something that could quickly turn into death (all it takes is a med reaction, bad kidney infection, exposure to illness that others get over in a week), you kinda develop a quirky way of getting through it all, especially if you wind up allergic to nearly every medication you try, and believe me, there are many to try.  How in the world have I come this far without falling into depression, lethargy, and self pity?
    I believe my autism has a LOT to do with surviving 20 years of severe illness in a fairly emotionally healthy way.  Unlike some mental illnesses that might continually focus on what a self is feeling all the time, autism lends to a sort of lack of self involvement that allows me to disengage 'me' from what is going on in my body.  I'll be the first to admit that I've gone through some very interesting depressions and mood swings, some of which lasted awhile, but I was born with this ability to 'step back' and assess myself objectively.  Let me correct.  I was born with a complete lack of self awareness that my mother felt had to be pumped into me so I'd learn to self monitor, but I did not truly learn to integrate self monitoring with public interaction until I was much older.  What I'm saying is, I was born with an ability to see myself in the third person and learned to apply that to problem solving.  I learned many things the hard way, of course, and may not have always been consciously aware that I was learning them, but I think I have saved my own life more than once because I can objectively notice behavioral patterns that indicate oncoming chemical response, so instead of running to a doctor for more meds to pile on top of new symptoms, I recognized that meds can ~cause~ acute depression, lethargy, and self pity.
    I'm way too wordy, but I think the point I'm making is that my weirdness is what keeps me going, no matter how black the world looks, no matter how bad the pain gets.  I can always count on myself to distract me out of the murky depths, even when I plunge pretty deep.  I think it's common for undiagnosed aspies to feel 'schizophrenic', not realizing that our two brain halves take themselves literally, along with the trillions of cells in our neural networks feeling rather autonomous themselves.  I really can count on me to be there for me.  I am never alone.  If you can imagine Mr. Spock being thoughtful in one side of my head, and Spongebob humming along in the other, I think you can understand where I'm coming from.
    Slow illness sux, as anyone can attest who goes through it.  That doesn't mean I want to speed it up, ack no.  But I know I'm not alone.  I look around and notice that some of the most creative things I find on the internet are made by people who live their lives dragging through long term conditions, no matter whether it's mentally based or physical.  Some have both.  Or a multiplex of conditions, as a main illness can cascade into more complications.  I'm noticing that the more bogged down we feel, the more creative we can become, and although I feel sorry that we have to go through such rough stuff, I think it's wonderful that I'm finding so many cool things created by people stuck in their homes or heads for a variety of reasons.
    My role model the first ten years from diagnosis was Stephen Hawking.  You have to understand I had such severe occipital neuralgia that I did everything I could to learn what caused it.  In my research I found out that the highest suicide rates due to illness come from people with severe cranial neuralgias.  ~Whee~.  I had to find a way around this.  I saw a guy losing everything he had to illness and gaining the world with his brain, and I thought, *I* can do that, too.  I learned to super focus my mind, and trained my brain to navigate around the pain sensations and concentrate on thinking Thoughts.  The harder the thoughts were to focus on, the more thrilled I became.  I didn't realize that I was creating ways to make more endorphins, because, like muscles, when you use your brain really hard, you can get kind of a runner's high.
    Along the way, I accidentally discovered the power of positive thinking.  That is not actually intuitive, but we see it so much on tv now, or hear it as a phrase, that we take it for granted.  I remember when it was a new movement in the psychology field, and recognized it as something I was already doing.  Basically, I can be whoever I want to be in my head.  I can be smart, cool, successful, pretty.  Your self image really doesn't have to be part of it.  If I were to pay attention to my *actual* self image, I would be sad.  I would bemoan the fact that I can't be active and have fun like my peers.  I would be a real drag, steeped in a black world of depression.  I don't like me like that.  I like the me in my head, the me I can make into whoever I want to be.  And ~that~ is really the real me.  That is the me who is my full potential.  What people see with their eyes has changed over the years.  When I am the real me that is in my head, it shows in the way I laugh and talk, in the way I express my body language.  I am unaware this is happening.  If I think about it, I still feel really shy about being stuck in a body that doesn't work or look right, especially on a rougher day when I hurt real bad, but when I am being the me in my head, something magical happens.  People start to see me that way.  They say, "But you don't *look* sick."  And I say "Thank you, I'm working on that."
    I have been called everything from retard to savant in my 46 years on this earth, and although most of it has been amusingly confusing (some tongue in cheek there), I've gained quite a lot of experience and feel fairly comfortable sharing my thoughts about the world around me.  I loathe getting into political and religious debates, having been immersed in such enthusiasm by adults around me since I was a toddler, but that doesn't mean I don't have opinions or don't care.  It simply means I don't take sides.  There are some things that I think are definitely right and wrong, and some things others feel are equally right and wrong, but I've come to the conclusion that no matter what is in our heads, the people in front of us are more important than any ideas we have.  If ideas destroy friendships and families when there is no other reason to 'fall out', then the idea is destructive, no matter how 'right' it is.  For example, refusing to forgive someone being different than you are when your belief system hinges around the concept of forgiveness kind of looks silly.
    Is there God?  Sure, why not.  I suspect that the human mind isn't quite sure how to deal with the world without automatically plugging something 'bigger than me' into the picture, and this seems to go back to the dawn of human time around the world without exception, so maybe that's just an inbuilt part of living in this universe.  I'm not sure that the conscious effort to either believe or disbelieve proves any points, but maybe the important thing is more about how our actions kill our beliefs when they don't synchronize.  I've noticed that respect and courtesy go a long way in this world, no matter what one believes is behind it.  I've also noticed that hostility is pretty unsexy.  There was once a young man on my campus who was beaten to a bloody pulp by a church youth group for wearing a Batman t-shirt.  Sorta makes you proud to be an American, doesn't it?  We must look like idiots.
    My mentor for making websites and blogging was a young lady with cystic fibrosis.  She created *fun*.  No one who visited her pages knew she was stuck in a chair having a succession of very bad days.  I'm not as good at it as she was, because I interject my illness into my creations in one way or another.  But through my own experiences of miserable nights up late surfing the internet for distraction, I know it's wonderful to find the fun and beautiful things that people create.  It's fun to find games and surveys and artwork and youtubes, and it all helps me get through the hard parts.  I don't know that I can ever give back what I've gotten out of the internet, and out of people like Stephen Hawking and Michio Kaku working so hard to give me things to think about.  But the least I can do is say THANK YOU.
    So to everyone who has been so cool about letting me be myself here without provocation even when I feel ornery, for the moral support and kind words-

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I've started transferring my survey posts over to Surveypalooza so people coming in from search engines on mobile devices will be able to see the surveys.


Apologies for the missing vids, another upgrade during the server migration swept through like a scan sweeping through the Enterprise. I'll fix those later, kinda busy...

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