It is pretty rare for a movie to hold my attention from beginning to end and actually have characters that I relate to on a personal level. This is especially true after the past year of dealing with this illness and growing to detest most of television and movies after spending hour upon countless hour too sick to do anything other than half watch the glowing box of mind numbing pointlessness. So when I write that I watched a movie today from beginning to end, and even paused it when I needed to answer the phone or force myself to drink something, that is saying something very powerful about the movie. I watched "The Cake Eaters", a movie I had never heard of before comng across it on Showtime. It is about a teenage girl with Friedreich's Ataxia, which they portray as a terminal illness. She is basically used as a tool for her mother (who can not see her as anything more than her disease) to gain attention as an artist, she is an outsider because to her healthy peers she is a "freak", and she wants to find someone to have sex with her before she dies because she is certain no one could ever love her. I am doing the movie an injustice in condensing it this way, but trying to summarize the emotional plot is difficult. I could completely relate to the girl in the movie because I have felt my entire life like "an other", and for years like I was somehow "less than" because I was born with a body that did not work according to factory specifications. I remember those years as a teenager wanting desperately and working so hard to hide the differences, the toll it took fighting to not allow anyone to see more of the monsters in my life than was absolutely mandatory. I have also felt like at times people have used me as a prop to garnish attention for themselves or been unable to see me as anything other than my disability. That feeling of exploitation, of being made inhuman and into nothing more than a diagnosis is something you never forget and that you rage against even if you rage silently inside. Most of all I related to her fears of never knowing love and not having enough time in life. I am all too aware that it is going to require someone beyond the definition of incredible to be willing to risk loving me, to see beyond all of the brokenness to see the whole person that I am beneath the surface, and to choose to enter the chaos that is my life. Whether or not such a creature exists is a puzzle to me.
Yet my biggest relation to the film was the sense of urgency, the sense of needing to live now because time seemed to be so elusive and so flimsy, like a vapor fading in the sunrise. I have a relatively creative and imaginative spirit, and I can see the possibilities where others see only the impossible. So it has always been frightening to me that in my own life I am unable to imagine myself growing old. I want to imagine it, I want to spread out my life like a time line and laugh at the little old lady with gray curly hair sitting in her rocking chair but I don't see her. When I think of my life and imagine it, when I dream of the future, it all becomes a haze around middle age and I can go no further. It is truly impossible for me to imagine growing old. This creates a sense of urgency in my own life, the need to live in every moment and to not waste this gift of life on the inconsequential things because I too can not sense a life that stretches into enough tomorrows to feel comfortable. I probably sound morbid and overly dramatic, like I am trying to work this thing for all I can, but anyone who knows me knows that I very rarely reveal anything other than the lighter side of this journey. I protect those that I love from the harder aspects, from the monsters that sometimes torment me at night and the harsh realities that have settled into the core of my being years and years ago. I don't waste time feeling sorry for myself too often because that is time I can not get back, and that time is a precious commodity. I am just processing all of these thoughts and emotions that arose from this amazing movie and seeing so much of what I have experienced - in terms of emotions and such- portrayed so incredibly. When I go to sleep tonight and dream of any countless dreams, I wish it would be dreams of growing old and rocking chairs and gray hairs. I wish I could even just imagine.

There are days when you feel like a little gray cloud is hovering over your head tossing raindrops at you, and then there are days when you feel like there is a giant storm cloud hanging over your head tossing lightning bolts at you. A week ago Thursday was one of those thunder and lightning days. First of all, I had to wake up at what is an unholy early hour of the morning in order to be at the doctors office by 9:00am for a spinal tap. Did I mention that this was a spinal tap being conducted with absolutely no anesthesia? Due to some beloved combination of genetics from being a true redhead (research supports the fact that redheads require more anesthesia) and my funky body, I do not respond to novacaine or lidocaine. I also do not respond to conscious sedation besides becoming slightly testy at the fact that I am told I have received enough medication to sedate an NFL team and yet am fully conscious and not sedate. So I was looking forward to that procedure about as much as one looks forward to walking barefoot in hot lava. I had been spending a few days at my Dad's house, and so I had not only my wheelchair but also my new forearm crutches and a duffel bag with clothes and medication to drag along. At O'still dark my stepmother loaded all of my accessories and luggage into the back of her pickup truck and I straggled into the passenger seat. However, her morning was going as well as mine and she forgot one tiny little detail. She forgot to close the tailgate. At the first turn in the road my duffel bag made its leap for freedom, with us completely unaware. Miles down the road, at the next turn, my wheelchair rolled out and into the middle of the road. Still oblivious. Two miles later it occurs to my stepmom that she does not remember closing the tailgate. Let the lightning bolts strike. She panics and blames herself, and I somehow remain freakishly calm. I guess compared to having my belly button pierced from the inside out, this all seemed relatively minor. We backtracked and discovered my vagabond wheelchair as someone was removing it from its desperate attempt to roll on down the road. I must commend the manufacturer because that chair took a bounce and was none the worse for it. We even found the brake extenders. For a cheap rental chair that thing sure has taken a beating! As we backtracked we could not locate my duffel bag anywhere. My poor stepmom was hysterical and I once again was very oddly all zen about it and not concerned because it was just stuff and stuff could be replaced. At no point did I become upset or concerned, which I believe is a total testimony to God because I have a strong German Irish temper and when stressed it tends to have a very short fuse. We could not locate my bag anywhere, so we set off for the doctor's office with my bag MIA.
The spinal tap was just as delightful as I had anticipated, but the doctor was skillful and truly did his best to try and make it less painful. However, I must say that I heard thunder when he told me I had to roll over onto my side WITH THE NEEDLE IN MY SPINE. When I mentioned that I was not so sure about this idea, he promised not to touch the needle - while this assured me I would not experience the shooting pain that came every time he touched the needle, it did not assure me that the needle would not move as it hung out in my spine as I turned over! The brand new resident whose other jobs were limited to cleaning my back with betadine, helping move my legs, and standing in the corner asked if there was anything he could do to help me. "Yes, you could remove this needle that seems to be stuck in my back" I replied. He was not sure how to respond, so he answered "I am not sure that would help you". "From this perspective it sure seems like a good idea!" He needs to work on a sense of dark humor. Once I was on my side, the radiologist doing the spinal tap announced that, joy of all joys, he needed to put the needle in further. I'm sorry, are we doing a spinal tap or piercing my belly button? After shouting "ouch", he promised the needle was in and that he would not touch it again until he removed it. Unfortunately, they apparently needed enough fluid to fill a child's swimming pool as it took 15 minutes to collect all of the vials. God bless the nurse, she told me they had ordered a large number of vials because of the many tests they wanted done but that she was going to collect a little extra and request that all unused fluid be stored and saved so that if the doctors decide they want to run more tests they will have spinal fluid without torturing me, um having me undergo another spinal tap. Oh, and to get the fluid to drain out I was elevated on this table that looked like a modern day electronic version of the ancient tilting rack. Their assurances that I would not fall off because there was a block at my feet would have been more reassuring if I were able to feel said block at my feet!! Ugh!!
So after spending 4 hours hanging out in the recovery room flat on my back, with a bandaid on my back and a bandaid on my butt from the shot of zofran I needed to tame the tantrum my dysautonomia threw at the invasion of the spinal needle, I was allowed to lie in the back of the truck to go home and lie flat for the remainder of the day. My bag was still missing, even after my dad had walked along the road near where we found my wheelchair and could find no signs of it. I was fine with it, and just thankful that my iPod and phone were in my backpack along with most of my critical medications. Again, so God and so not me. When I got home and was changing into pajamas to serve out my flat on my back sentence, my cell phone rang. It was Target pharmacy calling to tell me that someone had found my duffel bag and because I had a bottle of medicine with my name and their pharmacy number on it they used that as a way to locate me. They took my bag to the local police department where my father picked it up with all contents intact. Every pill, every syringe of lovenox, every item of clothing, every everything was there. It turns out a nurse on her way to work saw my bag right after it fell and stopped to pick it up before anyone else could steal it. She had to take her child to daycare and then go to work, but when she went through the bag looking for identification she saw my medication and knew I would need it as soon as possible. She never left her name, and I have no idea who she is other than the rainbow at the end of a day full of thunder and lightning. And reassurance that there are still amazingly good people in this world who do kind things without seeking reward or accolades, but just because it is the right thing or a good thing to do.