It was a cold and foggy morning, just before the sun would begin to ascend in the sky and start to slowly burn away the misty vapor that encompassed everything in a murky haze. While neighbors slept soundly in their warm beds, completely unaware of what was lurking in the dark fog, creeping ever nearer to my home. By the unholy hour of seven o'clock in the morning, before the sun's rays had struck over the horizon and as the darkness continued to cling to the cold blanket of foggy mist a rattling tapping was heard on my metal screen door. I knew it had come for me. Through the darkness, the fog, and the unholy hour it came and my defenses were not strong enough to even attempt a counter attack. With a groan and a deep breath, I flung open the heavy metal interior door to reveal one perky vampire dressed in Old Navy Fleece standing outside my door. Vampires should never be perky, let alone at seven o'clock in the morning but apparently she had not read the Vampire Handbook. This might explain why she was eagerly working as dawn approached instead of in the full coverage of the darkness of night - she had not yet read the fine print of her alternative lifestyle. I invited her in, since everyone knows a vampire can not enter a dwelling without an invitation from a living human being who does not seek blood for a living. Her hands were as cold as ice as she decided which vein in my arm would provide the best access for the snack sized tubes of blood that she needed to collect to ship off to the central laboratory for investigation into my human genetic structure. I think perhaps one small tube is saved and allowed to age like fine wine for taste testings much as we perform wine testings. As she slid the gardenhone, um needle, into my arm I think I caught a flash of fang glimmering in her grin as she watched my blood quickly fill up the tubes. Ruthless vampires. With a square of gauze and a bandaid, guaranteed to cause a rash as I am as allergic to medical adhesives as vampires are to garlic, she was finished. So now my blood will be intrusted to the vampire couriers of FedEx and I can go back to sleep for a while since it is still dark outside! The results of the genetic testing on the blood collected will more than likely take a while, as the nerds try to separate out the specificly identified genetic markers to see if I possess any of them, and I am just thankful that the sphincters at the insurance company have agreed that these highly expensive tests are indeed covered and medically necessary. Vampires and nerds and Sphincters, Oh My!

Last night the dysautonomia decided to remind me just how much power it possesses over my ability to function at the most basic of levels. I had one of my most severe "crashes" in recent memory, and most dramatic in terms of onset. The headache had been nagging at me for a while, but given that I have horrendous migraines that without high dose medication would be a daily torment I did not pay much attention to it. It did not even warrant tylenol let alone my pain medication. Then my temperature regulation went haywire, but that was easy to accommodate by changing into a summer shirt and boxer shorts. I was laying in bed listening to music and relaxing when in under a minute my body crashed. My headache escalated from a tolerable "2-3" on that stupid pain scale to a torturous "7-8", I became intensely nauseous, my vision began to fade out as my body prepared to lose consciousness, and I began to violently tremor. I had to fight through the head spinning, vision fading near unconsciousness to turn off the music that had become torture, to go get my blue barf bucket, and to grab an ice pack and water bottle. Those were the longest two minutes. Then all I could do was force down a double dose of antinausea medication and my pain medication, try (and fail) to eat something with salt to help bring up my blood pressure, sip on water, and lay absolutely flat and still while praying desperately. I could not sit up without the risk of losing consciousness, I could not move without risking vomiting violently (and then losing the medication I had struggled to get in to me), and my lower extremeties felt as if they weighed three times more than normal. I was hot and tremoring primarily in my legs. In other words for a good two hours I was miserable. Then finally the medication and liquids and laying flat and still all caught up and I managed to fall asleep. This morning I still have a bit of a headache, am exhausted, and my legs are sore but I am feeling so much better than last night. I hate these reminders of just how powerful this monster is and how it can take me from feeling decent to feeling dangerously awful in no time at all. With little to no warning it can shut down my body and hold me prisoner until it decides to release me. I have to just keep on living, because I refuse to live in fear of this monster, but it is like living with a shadow over at least a part of you or a nagging awareness that at any moment even the best day could crash down around you. This is my monster, and we are inseperable until a cure is found, so we face the world together - and sometimes he behaves and sometimes he rages but never do I surrender to him and let him live my life.

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.

 I'm Alive Kenny Chesney with Dave Matthews


So damn easy to say that life's so hard
Everybody's got their share of battle scars
As for me I'd like to thank my lucky stars that
I'm alive and well

It'd be easy to add up all the pain
And all the dreams you've sat and watch go up in flames
Dwell on the wreckage as it smolders in the rain
But not me... I'm alive

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
And I'm alive and well
I'm alive and well

Stars are dancin' on the water here tonight
It's good for the soul when there's not a soul in sight
This motor's caught its wind and brought me back to life
Now I'm alive and well

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
Now I'm alive and well
Yeah I'm alive and well

Life isn't fair. It's just fairer than death, that's all.

William Goldman, "The Princess Bride"

We are a generation of entitlement, a generation that believes that just because we exist we are automatically entitled to a life that meets some arbitrary definition of "fairness" and "justice". Last time I checked, my birth certificate did not come with any warranty or life time guarantee. There were no promises made, no refunds or exchanges offered, and no manufacturers warranty covering any part of the product.  This is life, not a lifetime movie in which everything works out hapily ever after once you use the required number of kleenex for those appropriately emotional moments, moments that are acceptable because you know the end will always be positive. Reality is not a movie of the week. You take what you are given and you have two choices. You can demand that you receive something else, that you exchange or get a refund of sorts and complain bitterly about the injustices of having not received all that you feel entitled to or you can suck it up and deal, living life as it happens and appreciating the fact that in all honesty we are entitled to nothing. The world owes us nothing but we tend to demand an awful lot from it, thinking we are somehow special and set apart. I am frequently told that somehow the way that I live my life is courageous and brave or that I am doing something extraordinary in how I am dealing with all that has happened in my life. I don't see it that way. I never signed up for this, I just happened to receive this body with all of its genetic misspellings and malfunctions. I can waste my life yelling that it is unfair, but that will change nothing. It will not undo what does not work right in my body and it will not guarantee me more time to experience being alive; it will rob me of precious time to treasure life and to make the most out of every single moment. I refuse to allow the things that went wrong to define me or to limit me or to prevent me from living my life. I only have this life and there are no guarantees or refunds or warrantees or exchanges and I do not feel that I am somehow so special that I am entitled to a life set apart from the realities of the world. Sure, it absolutely sucks at times and I get frustrated and overwhelmed and angry. Then I have a good cry if necessary and suck it up and deal because I am still so blessed. This is my life, and I can do nothing other than live it the best way I know how. I don't see that as anything special or brave or courageous. It is just ordinary me living the life I have been given and refusing to let a moment be wasted on false senses of entitlement or pity when they could be spent in joy and celebration and hope and wonder. I can dance and laugh and sing in the rain just as easily as I can in the bright sunshine, and puddle stomping is grand fun.

I have been pushing myself for the past two weeks or so, with my trip to Virginia and then having to immediately jump back in to my crazy life of medical appointments and such upon my return. While in Virginia I was smart enough to know when I needed to rest and not be too embarrassed to admit that I needed extra rest. Had I been with anyone else I would have kept my guard up and acted like I felt fine, but the friends I was with have seen me at my absolute worst and been there for me unconditionally so I trust them with the good, bad, and ugly of the realities of my life. Something - be it the delightful dysautonomia, the pleasant progressive spastic paraparesis/paraplegia, the lovely lupus, or a fun new friend - is slowly but steadily draining me of energy. Each day I find that I have just a little less energy than the day before and that I require a slightly longer (and I mean I am resting/sleeping for hours in the afternoon and evening) rest each day. It is like a giant tug of war with a monster in my body and I am sliding ever so slowly through muck and slime, unable to get traction. I hate when that happens! Besides, the monster is a bully with a serious attitude problem and he is interfering with my style here! I need to find some high octane fuel to help me yank that rope and send the monster flying into the giant pit of mire and muck and break this pattern of slip sliding away. It is coming up on holiday season again, and I refuse to be sick again this year!! I missed every single holiday last winter because I was so sick, and I want to make up for it this year. Starting with Halloween and going straight through St. Patrick's Day.  I want to celebrate life, hope, renewal, family, friends, love, memories, and all of the blessings in my life. I want to celebrate with the people who have been there for me, who believe in me, who have made this journey less lonesome and frightening and brought laughter and joy to it. I refuse to spend another season of celebration feeling awful, with no energy, and not myself. This is one battle I will not lose.

Your result for The Golden Compass Daemon Test...

Multi-Faceted Soul

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Tomorrow morning I return to my glorious life as a human lab rat as I undergo testing on my bladder and kidneys to determine what damage, if any, has been done by the fact that my body has decided I do not need to receive the nerve signals from my bladder all the way up to my brain. Apparently I need to learn to read the fine print about these tests before I agree to participate as I am going to end up having two tubes inserted into what I distinctly identify as exits only and electrodes placed on "sensitve areas" to measure nerve responses as well as having my bladder inflated like a water balloon. Oh the sick and twisted minds of the medical world, what will they think of next? I am not a fan of tubes, especially tubes in exit routes, let alone tubes in exit routes inflating me like a human baloon animal so this is going to be a miserable Wednesday morning. This makes the Kidney ultrasound seem like pampering at the spa afterwards! I so enjoyed my vacation from all of this medical stuff, and I am grumpy about having to come back to reality. Starting at 6am tomorrow I have to work hard at drinking clear liquids, but can not eat anything which I am sure will do wonders for my attitude when combined with the fact that I am going to be awake for the third morning in a row at an indecently early time. At least when I was little and had to undergo miserable testing I got bribe gifts of a new book and either a stuffed animal or other small trinket; now that I am an adult I have to just suck it up and deal, not even a sticker or lollipop. I really need to read the fine print because that just seems wrong! ;) Always, always read that fine print!

Barbara at TherExtras is having a Halloween Contest, and so while I have a tendency to lose contests I decided it would be fun just to enter. The contest involves writing about the benefits of dressing up for Halloween. I decided to keep it simple and not go into all of my textbooks from Child Development, but I could not resist my stockpile of photos to illustrate my points. :)

As a preschool special education teacher, one of the most beloved centers in my classroom was the "dramatic play" center. It was here with the pretend kitchen, ever rotating stock of supplies for theme play (a farmers market stand in November, a post office in February, a flower shop in May, etc.), and magical mystical dress up trunk that my little ones would be magnetically drawn.



We enjoyed the benefits of explorative dramatic play on a regular basis, in which children are allowed to make choices and explore different aspects of the world around them by taking on roles. They can take on the role of a superhero and conquor their fears, or that of the monster to make it less scary.


During imaginative play all things are possible, and there are no directions or instructions. The toys, the costumes, the props do not limit the range of the child's thinking but rather encourage thinking beyond the literal and into the world of the abstract and symbolic. Children have the opportunity to enter into play where they are in control, where they can take on the roles of the adults around them and "try them on".

Yesterday was Day Two of my girls only shopping adventures with my awesome friend in Virginia. I promised myself that while I was down here I would not allow myself to feel guilty for spending money on myself and for shopping in stores other than Walmart, Target, and the Salvation Army. The money I am spending is a portion of the one time payment I received from the Virginia Retirement System, basically a return on the money my district paid them towards my future retirement since I am now considered fully disabled. Money also went to paying for AFOs, towards my wheelchair, towards shoes to fit over my AFOs, towards a warm winter coat that works with a wheelchair, and a few medical bills as well as other necessities. Anyway, back on topic. Yesterday we first spent about an hour in Ulta which, until I met my friend, would have been torture but since her girly girl ways are contagious I am now very interested in makeup and nail polish and all that stuff. I needed to replace my makeup because most of that stuff is clearly marked with a 9-12 month shelf life and I have been using mine for about 2 years. Considering my immune system sucks, I think I need to pay attention to those things - especially things near my eyes. I do wash my makeup brushes once a month. After buying a good portion of the store, we ventured to Borders. As I was wandering around the store (I picked up the most awesome skull graffitti messenger bag for my wheelchair that will hold my laptop and is way more my style), a store worker who had already asked me twice if I needed any help stopped me again. Then she opened her mouth and the stupid fell out. "You sure are doing a great job wheeling around the store today!" She was full of some sort of combination of fake enthusiasm and pity and excitement that she thought she knew the perfect thing to say. Biting my tongue hard enough to attract vampires within a 5 mile radius, I waited until she has gotten out of hearing range before giving in to my need to respond. "And wow, you sure are doing a wonderful job walking today! Those steps are so even and fluent! Your gait so reciprocal!" Ugh!! I may be a little testy on this issue, but I hear the same comment over an over and it is a bit degrading - like it is amazing that I can continue to live my life even though I am reliant upon a wheelchair for mobility. I could understand if I was doing wheelies or 360s or other tricks, but my bag of tricks is shallow and empty. Most of the time I am pretty good about keeping the sarcasm inwards, but every so often it escapes. I need a sign for my wheelchair that says something like "Warning, Risk of Sarcasm" and "Legs dysfunctional but the brain still works". :)

I finally got a few photos of my blue eyed boy, the big brother of the excessively cute baby in my last post and so I wanted to quickly post those. He is a bit jealous of his little sister, and I think is still willing to trade her for a puppy but is the sweetest and most amazing almost 7 year old that I have ever known.

These are pictures of my amazing friend's 7 month old daughter, who I finally got to meet for the first time. She is beyond adorable and one of the most happy go lucky, laid back babies I have ever met. I need to get some good photos of her equally adorable, um I mean awesome (he protested the words cute, adorable, handsome, and cool before accepting awesome) older brother but for now I have a few pictures of the excessive displays of cuteness that are a blue eyed seven month old baby girl. She totally rocks the punk baby look, and digs skeletons and skulls. She is sugar and spice and already a fashion diva obsessed with shoes and style. I dare you not to smile!

I have a new nemesis to add to my list of things that I detest now that I am using a wheelchair. Pea gravel is evil. I do not particularly care about any aesthetic quality it may offer to an outdoor setting, it is downright sinister and nasty. Yesterday my amazing friends and I went to the National Botanic Gardens in Washington D.C. where we enjoyed a gorgeous outdoor garden as well as amazing indoor greenhouses full of incredible flowers and plants from around the world. We spent hours there and still did not see everything, and I can only imagine what it must look like in spring- especially in the outdoor garden! I had so much fun discovering beautiful flowers and colors I had never seen before, experiencing the sweet smells, and even soaking up some warm sunshine after escaping the Michigan dreary fall weather for a while! I took a lot of pictures, but as this was my first real expedition for photographs since being in a wheelchair it was a bit frustrating to realize just how much my literal perspective and ability to view things has changed. I could not "get in there" and get the angles I wanted like I used to, so I had to learn to improvise. I would like to have words with the genius who decided to "pave" the entire outdoor garden in pea gravel and consider it accessible. Really? Have they tried to wheel through that stuff, because it is like trying to wheel through quicksand! They have special wheelchairs you can reserve with giant balloon tires, but you then have to rely on someone else to push you thus taking away your independence. I brute forced it through, with a few occasional rescues when I got stuck in 3" deep spots and I think I now have arms of steel...and jello today! Inside was much more accessible, except in some of the rooms it "rained" almost constantly which meant on wet floors there was no way I could stop fast and so I may have accidentally rear ended a few tourists. It was an awesome adventure, and we just happened to be in DC during the Equality Rights Rally. For once, I truly felt comfortable that no one was staring at me as different or odd, but rather was totally accepting of me and my wheels. In fact, I had more offers of help and kind words than I have had anywhere else before. Especially when I kept finding the potholes in the sidewalk and the curbs that were just high enough to launch me forward and require backing over or re-aiming my chair. Oh, also I learned I should have taken my allergy medicine in the morning before going to a fully blooming garden with every kind of pollen imaginable. Um, yeah I was a bit slow on the uptake there and so I also sneezed my way through the gardens and on the Metro home.
I have about 70 pictures that turned out, which I will eventually post to my Flickr page, but for now I will put a few favorites in this entry. Pictures from my adventure in the garden of good and evil.

A year ago I began to exhibit the first significant symptoms of the disorder that would radically change my life. By October 23 I was hospitalized for the first time. On December 12 I walked independently for the last time into George Washington University Medical Center in Washington D.C. for another 11 day hospital stay during which I continued to deteriorate and no diagnosis was made. January 6 I was flown home via arrangements made by my home health care nurse in Virginia for what was anticipated to be a 2-3 month recovery period. It was not until May that a doctor began to recognize the severity of all that had happened, and not until September that I received a working diagnosis of progressive spastic paraparesis and paralysis, which is further complicated by my dysautonomia. It has been a long 12 months, full of things I would have never imagined. This has been a detour that I never anticipated nor would have chosen, yet along the way I have encountered some of the most beautiful and amazing aspects of life that I would have missed otherwise.
So it is fitting that right now I am sitting at the airport, having paid the low fee of $8 for the privilege of accessing the internet, awaiting an evening flight back to Virginia. No, it is not to return to my life there as I had expected when I first ventured to Michigan back in January, but it is to visit the second family I have there and to bring some closure to an open ending. One year later, stronger and wiser and forever changed I am returning to the place where this all began and to the incredible people who supported me like a family. They saw me last when I was at my weakest, my sickest, my most fragile and so I am excited to show them that I have fought back against this monster and am strong again, I am redefining what it means to live with a chronic illness, and I am myself despite the setbacks and frustrations. I am reclaiming what this disease tried to take from me, and this time when I leave it will be on my terms and I will have said goodbye. I also plan on visiting again, as I truly found a second family there. But this trip is about some unfinished business I have - some living, some laughing, and some reclaiming of what is rightfully mine. It is about coming around full circle.

This week has already been packed full of activities, more than my normal. Monday I worked with my stepmom canning salsa and applesauce, Tuesday I went swimming and then went on a variety of errands (found shoes that fit over my AFOs, found warmer winter clothes), and today I did a lot of standing as I sorted through more clothes at a charity where my stepmom volunteers and then went out to lunch. What the agenda still held was a dinner out tonight, swimming tomorrow morning, visiting with my niece tomorrow afternoon, packing for my trip, fixing my shoes (I need to add a new hole to the strap so the buckle works), sewing my slippers (long story I will get to another time on adapting), and the normal day to day stuff (dishes, cooking, etc.). My body is very good at giving me warning signs that I am pushing it too hard - I mean huge red flag warning signs. I am very good at ignoring these warning signs and pushing myself until I physically crash and end up very sick because in my mind changing my life to accommodate my illness is the same thing as surrendering to it. Obviously, I repeatedly learn that in the end the illness wins no matter what but I am stubborn. I detest giving it anything, even though when I don't give a little it steals a lot. Today I am making the decision to listen to my body, to see the red flags and respect them. I cancelled dinner and may skip swimming tomorrow morning depending on how I feel when I get up tomorrow. This is not a surrender. This is negotiations, this is a strategic retreat before facing forced defeat. Instead of trying to prove a point that I am in control and not the disease by trying to push beyond it, I will prove that I am in control by working around it and not allowing myself to get to the point where it overtakes me. I just have to remind myself that responding to the warnings of my body and accommodating them is not a surrender to the illness and then I am able to allow myself to make the choices that I need to make to maintain a decent level of functioning. So no white flags flying, but a purple blanket wrapped around me as I take a nice long nap!

I have adjusted to using a wheelchair, but there are few moments when it does not register to me as something foreign or imposed upon me. While I appreciate greatly the mobility it offers me, I still have so many fresh and often stinging memories of my independent mobility and my love for being in motion on my own. It does not yet feel like a natural part of me, but rather still like a somewhat awkward contraption of metal and vinyl. Today was different. For a few moments I completely forgot that this was not natural, that this was not how my body has always moved, and I felt free and joyful in motion. We had a family lunch today at a nearby restaurant, but we arrived about 10 minutes too early, as our reservations were for just when the restaurant opened. So I was hanging out in my chair in the parking lot with my family, and as I started wheeling towards the more sheltered area of the building to escape the wind (I had decided to wear a skirt - bad planning), I noticed my wheelchair was acting weird. It was almost skipping when I pushed it. Finally I realized my Dad was walking behind me and stepping on my wheel every time I pushed. Without a thought I spun around and began to chase him around the parking lot. I was racing, I was turning, I was weaving in and out of obstacles and laughing hysterically. He tried to escape by darting between my stepmom's truck and a post, thinking I would not make it through, but I navigated without any problems and almost caught up. Then the wind kicked up when I was facing the wrong direction and my skirt flew up into my face. Good news: I had on thick purple tights so nothing was revealed. Bad news:I had on thick purple tights and my skirt flew up in my face. I could not stop laughing and neither could he. Finally I surrendered and spun on my wheels, tossing my tangled mess of windblown curls with as much attitude as I could muster with my laughter and promising revenge. I swear running over his foot when we went into the restaurant WAS an accident, just a happy coincidental accident. But as I chased him and we laughed in the fall wind, I forgot that the wheelchair was foreign to me, I forgot to hate the fact that I "should" be running, I forgot to long for the free movement I used to know and reveled in the freedom and movement that I captured in my chair. I forgot that I am different, that I am dealing with more medical issues that JAMA, that in just one short year my life has radically changed and I lost myself in the sheer joy of the moment. What used to be did not matter and what may happen was not a worry, and for a moment I forgot it all.