I closed my eyes, rested my head back on my headboard and this thought came into my head...sometimes all I can see is the bad stuff. I feel like I'm surrounded by all the bad stuff. I'm saying that looking out onto a golf course in Phoenix in January. What is wrong with me?
That's the imbalance of a chronic condition, you don't get to skip the bad stuff and the good stuff is just so damn hard to find. It's there, and many many days you find it in droves; but it isn't there to be taken it's there to be found. But the bad stuff, oh it finds you so easily. It drives a Mack Truck right through your life. I still need to find the time to go to the dentist, I need a new prescription for my glasses, I've turned middle age and all the stuff that healthy people constantly complain about is right there hanging out with me too, and a bunch of other stuff like everyone else. No one says, oh you're sick so you get a pass. We will skip over you since everyday is a heap of challenges to get through. Nope. Nada. Nil.
What upsets me the most when I lie my head back and close my eyes is the smugness of healthy people. Not all healthy people are smug; but wow a whole hell lot of them are. It's the same smugness of those punks at the Apple Store. You know what smugness is to someone dealing with a chronic illness? Well I'll tell you...it is being told tips by lay people when you have a doctorate in Naturopathic Medicine before it was hip to be doing yoga, pawning oils and they hadn't yet begun selling pre made low sugar orange juice. Oh thanks, I didn't think to meditate...because the MIND over BODY part becomes a favorite topic of conversation among healthy people; it means their mind is stronger and better hence why their body is cooperative. Yeah...keep telling yourself that...until it's you.
Then there is the smugness of the new doctor consults. They are convinced if you only had come to them first you would be better. Then they try all their little tricks, they all backfire or make no change..and they say be patient. Oh, I'm patient. I have never blamed a doctor for this situation - except those in the beginning that didn't take me seriously. The best doctor to find is one that has been a patient. They know the exhaustion of the hoops to jump. The conflicting opinions. The waiting. The helplessness.
I saw Elizabeth Smart on CBS Morning News giving her perspective after Jamie Kloss saved herself. In case you aren't from WI even though the news was pretty viral. Jamie was kidnapped at gun point and witnessed the murder of her parents. Her mom was forced to duck tape her mouth while a gun was pointed at her in the bathroom as she tried to shelter her daughter. Her father had already been shot dead through the front door by this assailant. Jamie then was shoved into the trunk of this random man's vehicle that just happened to see her while she was headed to school one day. She lie in the back of that trunk while she heard sirens racing to the home where they would find her deceased parents. She was held captive for 88 days before she escaped to run into the arms of a social worker walking her Golden Retriever who ushered her to a neighbor's house called 911 and there was finally a collective win around the country. Well the best you could hope for out of a horrific situation. I know this is a win, clearly. But it is really hard to feel the win when she couldn't run into the arms of her parents.
Back to Elizabeth Smart. The girl that was taken from her Utah home in the middle of the night. Whom was thankfully spotted despite the fact that only her eyes were visible through the veil she was forced tow wear. Elizabeth Smart said something like this when asked what advice she would give Jamie. She said first let her make choices even the smallest of choices like what cereal she wants to eat because for the last 88 days nothing was her choice. And she said, so many people asked me "why I didn't run" and all I heard was "you did it wrong, you should have.".. Elizabeth said the best thing was her mom said to her - you did everything right because you are alive. And that was what Jamie needs to hear - she did everything right she survived.
I stared at Elizabeth Smart, and was in awe of this angelic looking late 20 early 30 year old woman that seems like she is from a different era, with such respect. She also said, the person that left is not the person who came home. Every single thing she said felt like she was speaking to me. That's what this illness feels like; that you have been kidnapped and are in a strange place and you are just trying to survive in this new body that you really don't understand. You too are constantly trying to find your way home; your way before. But before doesn't exist anymore...not yet.
I can't imagine what Elizabeth must have felt like people asking her questions like "why didn't you run" and have to explain the unimaginable. I would have been one of those people, maybe not directly to her but I was one of those people. Because that's what we try to do when we don't understand something or we try and fix something that's broken. We think what would we do? But as Elizabeth spoke I realized there in lies the same problem that I have dealt with over and over and I haven't gotten to where Elizabeth is yet. All the questions people ask me well intentioned as they may be all I hear is "why aren't you well yet." I haven't gotten to where Elizabeth is and deep down still think this is my fault.
You don't have to say anything right or wrong for me to think that- because when you are dealing with the unexplainable and nothing works the only real explanation becomes the person themselves. Kind of like how my computer keeps flagging "unexplainable" as a misspelling but every damn time I try and click spell check it doesn't highlight it and give me another option. User error becomes the only explanation. While I'm on that tangent I'll say I've having a horrible time concentrating and writing because I had to ditch my old computer since it wouldn't talk to any of my devices and this new computer I am mistyping since the spaces are slightly further apart. It's driving me absolutely nuts because I'm a good typer and now everything is a typo then I lose my train of thoughta nd then the spell chekc is not working. See I left that sentence so you could get a good idea...also my lungs just tightened up about 2 hours ago for no discernible reason, so I was doing a nebulizer and typing this poorly and have 7 drafts that I haven't put out there for the same reason because of this damn new Apple that many people would be excited about but was just a money grab for my cramped fingers that need to relearn a keyboard. A keyboard is like a piano, the keys matter. My rhythm is all off, my head is moving faster than my fingers. And then I remembered the second reason I'm having trouble typing is because someone whom I can't remember put on FB that you are no longer suppose to put two spaces after a period. So I keep back spacing and then saying screw it who will notice and then every time I put a period I once again lose my train of thought. I think I've just "broken the 4th wall" or is it the "third wall- whatever that term is when they take you out of a really good movie to show you the behind the scenes. Yeah sorry, that's what I'm doing right now because my fancy new computer is doing things like this.
Okay, I just have to say for the record that was pretty cool. No not the bizarre "Johnny Visible" that showed up when I was trying to correct a spelling mistake. But I just did my first "airdrop" of a photo and somehow accidentally did it correctly, take that punk genius. Which is one of the reasons I needed a new computer because I couldn't get my music or photos on the old one anymore. Thus every time, for the love of all things I just typed five words incorrectly and whomever may know teh person who put that thing on FB about the two spaces now only needing to be one space..I'm living on the edge old skool...two spaces take that. See there was a win in this bad stuff feeling life. Airdropping a photo just became applause worthy in my brain fogged mind. Back to the blog if you are still holding on with me...if you are bless your heart I would have stopped ages ago...
It is amazing what for me a split second does for my train of thought. This is the first post if I even hit "publish" on this new computer because that slight change in the keys has completely changed my rhythm. Just like this illness, some tiny tiny undetected chain of events went wrong and here I am still kidnapped by it's trappings. So here's the thing that could have been said very concintly...
|I'm too tired to bother to correct the spelling..but heck I'll airdrop !|
Take home message. Elizabeth Smart and Jamie Kloss you are both wildly amazing human beings. And here's the thing even though you both went through more horrible unimaginable experiences than anyone can imagine no one is giving you a free pass either for the rest of your life. Life is not handed out in neat little piles of good and bad. It is a mess on a tray and you take your mess and make the best damn sculpture you can from what you have been given. And the only way to do that is to work with what you have not with what you don't. So I am learning from you; if you can find your way home I sure as hell better get my big girl pants on and find my way too.