I considered removing the post from a day or two ago, but the emotions in it are so very real and are just as much a part of what this journey entails as the laughter and joy. It may not be as pretty or enticing, but it is a side of dealing with this and the truth is that even though I am able to remain positive a lot of the time, I am only human. When I read back through this at a later date, I want to read back through and see an accurate representation of the journey - both the beauty and the shadows. I apologize if that makes anyone uncomfortable.
Moving onward, today I have a very important medical appointment with a top specialist at the University of Michigan. He is a neurogeneticist and also a specialist in progressive spastic paraparesis/paraplegia. My amazing neurologist referred me to him for a consult to see if he thinks this fits the pattern of the progressive spastic paraparesis (PSP) or if he has any other ideas regarding what this could be. All of my doctors seem to agree there is a genetic disorder at play here, because the statistical odds of so much "going wrong" in one person at such a young age at the same time without a genetic "umbrella cause" is astronomical. As one neurologist put it the odds are like being hit by a bus while being struck by lightning and winning the lottery without having bought a lotto ticket.
This will make for a long day. A long drive, most likely a long wait for the doctor (specialists never seem to run on time), a potentially long appointment (the paperwork said 1-3 hours! What takes 3 hours???), and then a long drive home. But if there is hope for answers, it is all worth it. I am nervous though. I am nervous that once again I will get my hopes up only to have them smashed. I am nervous that the doctor will not be receptive to listening to me and truly hearing me. I am nervous that once again I will be treated with disrespect and my concerns and knowledge devalued. I am nervous there may be no answers. I am giving these fears to God and praying that His will be done, and that I have an open heart to His will.
It is beyond cold here today (windchill is in the negative digits) so this could make for a fun doctor visit. Because of the dysautonomia I have to dress in layers in order to maintain body temperature. Layers include leggings, leg warmers, and multiple pairs of socks underneath my jeans, and two or more shirts layered beneath my jacket. In winter I always have to wear a hat to help keep warm (sometimes even in the house), and scarf and gloves. So I have a feeling I may end up having to change once I am at the doctor's office to remove a few layers. I am very much like the kid in A Christmas Story who can't put his arms down. But it is either that or my body temperature rapidly plummets. Considering I drop down around 97.4 inside the house without provocation, imagine what it would drop to outside in the cold!!!
I will update with any news from the doctor, any funny stories, or with a new journal entry soon. I have coffee to finish drinking and then I need to start to assemble the layers for the day. :)

I would like to remind people that they do have the right to remain silent and that in many circumstances I would love for them to please use this right. Today I was waiting at the end of a typically long holiday line when a woman (I will NOT call her a lady) and her boyfriend/mate got in line behind me. She appraised me and my wheels and I knew I was in trouble. Inside I pleaded with her to use her right to remain silent and not open her mouth, but of course she had to let the ignorance talk.
"A wheelchair, that is a great idea! I need to get one of those! Standing in these long lines just makes my legs so tired." Allow me to state she was in her 30s or 40s with no apparent health issues as she left her mate in line and literally ran out to her car and back later on.
I spun to face her full on and very coldly and evenly replied "I'll gladly change places with you."
About 5 people around us started laughing as I spun myself back around facing forward in a "kiss my axel" movement. I think they were laughing for two distnict reasins: 1) relief that I had handled the situation without a need for security or police involvement and 2) the sheer ignorance of her comment being succinctly put in place.
Really, even as the exchange was going on a part of my mind was in complete shock at the level of ignorance and lack of tact she was giving voice to and the fact that it never occurred to her that perhaps the wheelchair was more than just a portable seat.
The saddest thing is I don't think the encounter even made it into her awareness, and I have no doubt that she will without hesitation make an equally ignorant and inappropriate comment in a similar circumstance given the opportunity. You can not force someone to become educated, only provide them with the opportunity for enlightenment. that said, you can also wish for them to keep their ignorance to themselves!!

This morning started off with a series of small frustrations that led to the breaking of my ability to cope. It is generally not something large that causes me to crumble but something small, something little and seemingly inconsequential in the grand scope of everything that, when added to the burden and weight of everything else sends it all tumbling down. I had met and then exceeded my maximum capacity for processing life in general and my life specifically. These moments and times are rare, but they do happen and I am learning not to feel inferior for allowing them to happen but to realize that they happen because I am mortal, human, flesh blood and bone. So after a good cry and informing God exactly how I felt today about His plan for my life, I decided that I needed to DO something in order to regain a sense of order. Normally I would have escaped on a super long hike through the woods where God and I would have had a long conversation and He would have shown me through His creations just what I needed to learn. Normally is not an option. So instead I set out with Nessarose (my wheelchair) and decided to just GO. First I went to the library, one of my favorite places (I love to be surrounded by books) to return my last set of books and see if I could find any new ones. We have a small town library so normally I borrow books from other linked libraries that have a larger selection, but I was able to find a few. Then I went to a restaurant where I had a kids meal and then ice cream for dessert while reading one of my new finds from the library. From there I went down to the old downtown waterfront (riverfront) area and watched barges on the river, enjoyed the breeze from the water, and made a trip to an old fashioned drug store to pick up a medication and something I have been looking everywhere for. Then I went back along the streets lined with family owned businesses, over a river glimmering in the sunlight, and back along quiet neighborhood streets to my home. By the time I got home I was exhausted, but I was also a lot more at peace. I am still processing emotions and having an off day but it is so much better than this morning. Best of all I coped with what easily could have been overwhelming emotions in a positive, productive, and effective way and recognized that *gasp* I am mere human and will have bad days and that this does not make me any less of a person. I shall finish the evening with fuzzy pajamas, hot chocolate, and a good book, and have sweet dreams of a new day tomorrow.

I have opened this journal several times to write only to find that the words do not exist for what I have been feeling. At times it is difficult, if not impossible, to capture in words the countless layers of emotion and processing of this experience. I am also a highly introspective person, which can be both a blessing and a curse. In a memoir of an individual who suddenly became paralyzed by Transverse Myelitis, he described the process of coping and "grief" as akin to a Tsunami - just when you think you have it under control and you have accepted the changes in your life you realize that was just the temporary calm of the tide receeding to prepare to slam back into the shore. You think the first year is the hardest for adjustment, but as the end of year one approaches it is starting to become a deeper reality that even though I continue to undergo seemingly endless medical testing there will be no treatment awaiting me that will make a differnece in the functioning I currently possess. Unless God decides to perform a miracle, this is most likely as good as it is ever going to get again. I have known that but now I KNOW that, if that makes any sense. Words fail me here. I am still living my life, savoring each moment, and refusing to live on any terms other than my own. Yet things that used to sting hurt just a little bit more right now, like my protective skin is raw and vulnerable. The moment every morning when I wake up, before I remember all that has happened, is incredible in its innocence but the smack of reality that follows a heartbeat later seems slightly harsher. I am more frustrated by the fact that people try to make me fit their image of what someone with a disability should be, creating an image of a saint who does what they "could never do" and is "coping so well" and is "so strong". I am human, not a saint, and I don't remember being given a choice about this course of my life, I am just doing what I have to do in order to live the life I have been given and I have good days and bad days and days I debate with God. I am the same person I was before this happened, and it hurts just a tad more to see how that identity is stolen from me as people struggle to see beyond the chair and their own issues with it. If I tried to find words to describe how I am feeling they would be raw, vulnerable, pensive, introspective, and re-cognition. But these words are not sufficient, they lack and miss the emotion and the experience and the journey. Sometimes words simply do not exist for this thing we call life, but we can learn so much even where the words can not travel.

I am no longer allowed to play an at home doctor, not even on television, as apparently in failing to call for emergency assistance last Monday when I had the severe autonomic crisis and then treating the symptoms myself I could have very well suppressed my respirations to a point that when I finally fell asleep my brain could have "forgotten" to breathe. I had not considered the fact that all of the medications I took to treat the symptoms - pain medication, anti-nausea metication, medcations for spasms in my muscles- have the potential to suppress respitations in a normal and healthy body not to mention in a body in the midst of a hypotensive crisis. Have I mentioned that during these crises my thinking becomes a bit murky and not the most logical, probably because with a blood pressure at or below 80/40 the amount of oxygen reaching my brain drops a bit. My neurologist, my amazing and wonderful and incredibe doctor, pointed out my incredible stupidity to me, and in a very nice way. So now we have a plan for how to deal with these episodes and I have in writing a very basic procedure for any emergency care physician to follow should I need to call for emergency assistance. One of the reasons I did not call 911 was because I know that at the local hospital they have never treated anyone like me and I did not feel good enough to talk them through how to do so without killling me off. It is difficult being so complicated.
I also got in trouble for stopping a medication without permission because unbeknownst to me it is also used to regulate blood pressure in people with dysautonomia (that is not why I was started on it or was taking it) and so I was informed I am not to self adjust my medications anymore without explicit physician permission. Oops. Lets see, I also learned that it could take weeks to recover from that big crisis which may explain why I have been so fatigued, so much weaker, why the spasms have been worse, why I have been so nauseous again, and why I have had no appetite (although that does not seem to be slowing down the annoying weight gain - ugh!!). And that is as long as I do not have any more episodes - which I already had an average one last night that I treated appropriately where my blood pressure dropped to 90/38 and stayed in that range for about 3 hours. I pushed fluids, laid down, and monitored it with the plan in mind to call for help if I felt worse at any point. At no point did I feel like I was losing consciousness so it was not a horrid one.
We are also going to do pulmonary function tests since I have been more short of breath since the crisis, and it appears based on the asthma meter given to me in the hospital last December my lungs never returned to full function after that hospitalization. I do not have asthma, but my diaphragm was impacted by the severe muscle weakness. Other than that we are awaiting the results of genetic testing, I see the top specialist in the progressive spastic paraplegia in December, and after that visit I regroup with my nerologist who mentioned a possible assessment at an MDA clinic if we do not get a firm diagnosis from the PSP.
Today I go get my wheelchair, in just a few minutes we leave and I am very excited. Oh, and I also have to restart physical therapy because my legs are too tight - I can not straighten my knees anymore which makes standing hard and walking any steps harder because I rely on locking my joints for stability to walk.
I will update with info on my new chair and hopefully pictures later. I am such a dork excited about my wheelchair!

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!

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.

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.

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!

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". :)

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.

Today I was feeling unusually decent in terms of my energy. I have days where I am capable of rolling myself places, and days when the trip from the bedroom to the couch is a feat of great accomplishment. Whether this is a result of the PSP (progressive spastic paraparesis/paraplegia) or the dysautonomia, or any one of the other alphabetical soup disorders I have is up in the air. I think at this point we could pick any one of them and say that yes it could very well be a cause of the variable levels of energy, of strength, and of functionality. So today was a very good, unusually good functioning day and I decided to take full advantage of it. It is a cool fall day here, with bright sunshine and a crisp breeze that causes the leaves to rustle and washes away any remnants of summer. I first ventured to the local library to get a library card, and found myself there in the midst of their toddler story time. Normally this would be precious to me, but we are entering flu season and I am allergic to the flu vaccines. Thus normally sweet and precious little children now appear as germ factories and virus carriers to me until spring slowly transforms them back again. I stayed on the "grown up" side of the library until the walking germs dispersed. While hanging out at the library I found three books I want to read, which is a very small haul for me at a library but I currently have a stack of books that I am still waiting to read left over from my birthday. Besides, it is a pretty short roll so I can go back on most decent days. Then I rolled myself to the grocery store. On the way from the library to the grocery store I encountered my least favorite feature of engineering- the supposedly accessible sidewalk cutaway that is anything but wheelchair accessible. I spent a good 5 minutes fighting against gravity and poor engineering trying to get up onto the sidewalk from the driveway of a business without either 1) dumping my chair and myself into a heap on the ground or 2) dumping my chair and myself into a heap in the middle of the road. Finally I somehow cut an angle and got traction from the grass alongside the sidewalk and with brute force and prayers got up to the sidewalk. I was more proud of that victory than I was proud of just about any other accomplishment. So I began rolling again and realized that a car had just pulled into the driveway of the gas station, and was going to be obstructing my path. Not a big deal, I would wait for the car to turn. Then the person in the car waved at me. Strange. I am pretty new to this small town, and I do not know a lot of people who would be waving at me but to be polite I hesitantly waved back. Then the window rolled down and a guy stuck his head out of the window. Now I knew I had no clue who he was, and I was not so sure this was a situation I was particularly fond of finding myself in. "Haven't I seen you at the mall before?" He asked me this, and inside I started laughing as I wondered if that was some sort of pick up line, and if so just how pathetic that line was even when compared to old and worn ones. "Um, yeah, maybe." "I'm in a wheelchair too." With those words, the walls fell down and we instantly knew - we knew a good deal of what life was like for each other. There was a connection like finding a brother or sister, like a member of a secret society or a vetran of a war. In those words he told me that he understood what it was like to be struggling with rocky sidewalks and people staring and the joke of accessibility and the frustrations and the stubborn will to not let it define you. I grinned at him and said "Oh, okay!" I know, nice response! What can I say, I am a dork?!? He introduced himself, and I introduced myself and then his turn was clear so he pulled away. With a smile on my face I continued to wheel my way to the grocery store,  no longer ashamed or angry about the battle I had waged with the sidewalk because I knew there were others who had been there and done that. I am a part of a fraternity that I never chose to pledge, that I never signed up for but that life pledged me into courtesy of SPS. Others are pledged in by spina bifida, cerebral palsy, multiple sclerosis, or spinal cord injuries among others. Once you are a member you are a member for life because you never forget your experiences and your life is changed forever. And you always respect another member because you automatically know two things about them when you meet them 1) they are facing obstacles and frustrations that are common to most everyone who uses a wheelchair in addition to their personal challenges in life that we all have and 2) they are chosing to get on with life anyway. It is a sense of not being alone, of not being the only one who curses curbs and laughs at "accessible" entrances and wonders who decided the angle of the ramp and if they were deranged or just evil and loves clear downhill sidewalks without any cracks in them and does not take little things like reaching an object on a shelf, tieing your own shoes, or taking a step forgranted. It is a fraternity you hope to never join, but if you do you are glad to know there are others there with you. Now I just need to learn the secret handshake!

So this evening I had the brilliant idea that since my new AFOs provide better stability when I stand, I should try and see if I could take any steps without assistance. No, I do not know why I temporarily forgot the fact that the last time I attempted this stunt I face planted with astonishing speed and force or the fact that I have a hard enough time maneuvering with my crutches. It seemed like a brilliant revelation and a great way to prove that this disease is not progressive, that I am getting stronger. There might have been a little stubborn pride and will tangled up in my brilliance, a touch of denial, and some strong desire to take back control. So step one was standing without assistance, which is dangerous in and of itself because with my trunk muscles weakened I have a difficult time maintaining balance. In physical therapy, the therapist was literally able to knock me over with two fingers pushing my chest, back, or side. I am a living Weeble Wobble only I do fall down. That right there should have illuminated the predictable outcome of my brilliant idea, but I was so caught up in my revelation that common sense became uncommon. I managed to stand with my feet spread out in a wide stance (nothing dainty or feminine here, I had work to do). Then step two - moving forward. Hmm. This is the part that is really tricky, because with my crutches I use my upper body to puch upward and then just kind of drag, thrust my lower body along for the ride. I twisted at the waist but nothing happened other than a near fall. Okay, so my legs feel like they somehow weight about 500lbs yet are as sturdy as tiny twigs and I seem to have no motor plan for moving them forward without holding on to something. That should have been a red flag, but I was still being stubborn. A few more twists and I looked like a robot set to self destruct dancing. I finally somehow managed to clear the ground by about 0.001 millimeters with the bottom of my right foot while twisting and my foot ended up maybe half a step forward as my arms spun wildly in the air. With all of the wild arm spinning and hip twisting and flailing, my left fot cleared the ground by the same 0.001 milimeters and ended up maybe a half step forward. Yea, woo hoo, two steps. Except I was not done flailing and fighting for balance, and the fight was not in my favor. As I plunged to my knees and broke a further forward fall with my arms my pride also took a spill. The hardwood floor was not the most ideal of landing surfaces, and both my knees and pride are going to be banged up. After sitting on the floor for a minute having a good old fashioned pity party, I creeped my way over to my wheelchair (just those two half "steps" and the forward fall behind me) and hauled my dejected self back into it. Sometimes my body feels better in terms of the muscle spasms, and the dysphagia, and the constant nausea, and the horrid weakness, and the fatigue, and everything else and I think maybe, just maybe I am "getting better", maybe I will walk independently again or even with assistance as a functional skills, maybe this will all go away. And then I test my limits, and hopefully all that I bruise is my ego and my pride when the truth knocks me down. So tonight I have an ice pack on my pride and a few new bruises on my knees. Both will heal with time.