I am sleepy as I write this, so the odds of it making any sense at all are at best 50/50. :) Make your wagers now! This photograph is of the image on my new favorite T shirt from Zazzle. I may rely upon a wheelchair for mobility, but I still have attitude. For a while now I have been feeling like my life is stuck in this sick and twisted version of the movie Groundhog Day where each day is a repetition of the day before and there is no escape. I thrive on having to think, to problem solve, to be creative, to engage and interact, to create new ways that have never been tried before, to celebrate successes that to the outside world seem insignificant but to the world in which my heart dwells are achievements akin to climbing Mt. Everest backwards while blindfolded. For too many months my life has been on hold. I have been in a stagnant holding position, a medical limbo, a place of existing but not living my life to the fullest. That is not me. I need to live my life and live it out loud, to live it to the limits, to live with passion and pursuing the gifts I have been given and the marvel of truly being alive. I can either wait in this holding position to die, be that at age 35 or 75, and just wander through the intermittent time, or I can take control back in my life and live every single moment that I have no matter what life throws at me. I will rebel against this disorder that continually whispers "you can't" "you lost", "that is impossible" and throw in its face all that I can do, all that is not lost, all that is possible. I will chase my dreams, even if those dreams have been changed slightly, and I will not remain stagnant any longer. It will take time to get a plan of action in motion, but I am beginning the process. I am breaking free of the hold that this has had on my life and declaring that I will live my life boldly, unabashedly, in faith and mercy, and refusing to sacrifice a moment. I must create something powerful, something beautiful, something of change and impact from this situation. I must choose to live instead of just being alive. In the future I see myself returning to college to pursue a Master's Degree, regaining my independence so I no longer feel trapped by relying on others for my access to the world, and reclaiming the passions in my life. I, and only I, will define who I am and what I am capable of, and my life will be limited only by my ability to imagine and to believe and to create adaptations as needed.
If this sounds dramatic, I apologize but this past week has been rough emotionally. This was a break through to realize that life will not be like this forever and that I can change so much of my reality. This life is mine to life, or mine to surrender. I am a rebel with a cause again!
P.S. Please let me know if this does not make any sense and I will rewrite it when I am more awake. I am very groggy and sleepy but wanted to write this tonight.

Frustration has become a frequent visitor as I am constantly reminded of how different my life is from those of my "peers", and as I continually discover obstacles big and small where they never existed before. Most of the time I am pretty good at using my skills honed as a teacher to problem solve and either create alternatives or adaptations. Some things I have yet to figure out and are just annoying, like the fact that at least once a week I manage to forcefully jam a thumb between a rapidly moving wheelchair tire and the immovable brake gear. This happens because for some odd reason I can not figure out, when I am not thinking about it I push my wheelchair by the wheels more than by the push rims. I partially blame the "genius" who never asked me what kind of push rims I wanted and instead made an executive decision for chrome. Because shiny metal is so easy to grab, does not possibly rip skin from your hands and cause frostbite when it gets wet in the cold Michigan winter, and could not ever become burning, scorching hot in the summer. My patience for the stupid that seems to bloom in people when they see someone in a wheelchair has been worn very thin, and I am not yet at the point where I feel like being an educator and advocate about disabilities. Children do not bother me - they are curious, I love when they ask questions, I love watching them process it all. Adults who assume that because my legs do not work according to standard operating instructions that my brain must also operate on a different frequency frustrate me. People who assume that I have become hearing impaired because I am sitting down make me laugh, but annoy me. Anyone who asks me where my parents are or who is with me or if someone forgot me triggers the redheaded anger, which is not recommended. I am tired of the world defining me by my body when I am not my body. My body is a tool that I use that allows ME - my thoughts, my ideas, my emotions, my personality, my existence- to navigate through life. I am so much bigger than my body.

Bigger Than My Body - John Mayer
This is a call to the color-blind
This is an IOU
I'm stranded behind a horizon line
Tied up in something true

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for

Why is it not my time?
What is there more to learn?
Shed this skin I've been tripping in
Never to quite return

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for
Cause I'm bigger than my body now

Maybe I'll tangle in the power lines
And it might be over in a second's time
But I'll gladly go down in a flame
If the flame's what it takes to remember my name

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body
I'm bigger than my body
I'm bigger than my body now

It has been a very long time since I have written anything here. Extremely long by my standards. I have been busy cleaning house in many ways. Well, first I was busy sending out prayers of Thanksgiving for the invention of TamiFlu as I dealt with a low grade version of the flu my mother got for Christmas. She got really sick, I got preventative Tamiflu and was able to get through with minor symptoms. Considering I am a living, breathing risk factor I call that a victory. I ended up staying with her for about 3 weeks instead of the 10 days I expected around Christmas because I wanted to make sure she was over the flu before I left, and I selfishly did not want to bring the germs home with me. :)
When I got back to my apartment I realized that I had left it in a mid-Christmas state of disorder. I dislike disorder a great deal. Now, my apartment is tiny - no more than about 500 square feet on a good day- so something as simple as a few items of clothes on the bedroom floor make a big difference. This was disorder and chaos. I totally rearranged just about every storage system in my house - my bookcases, my "office space", my kitchen cupboards, my dresser, and my arts and crafts storage. I am ignoring my closet because as the only closet/built in storage area I have decided it is a useless cause and as long as I can close the doors it is all good. I have no coat closet, no linen closet, no storage area so my closet serves more functions than is probably legal. Then I ended up washing almost every dish that I own. I hate dish washing because 1) I am the dishwasher and 2) the sink is not handicap accessible so dishwashing involves this awkward sideways contortion. I have tried using my braces and standing to wash dishes, but since my legs turn an awful shade of purple gray with white blotches after I stand for more than a few minutes, and I eventually develop syncope if I do not sit down, this has failed to be successful. Apparently my dysautonomic circulatory system has issues with sending blood to my legs and retrieving it when I am in an upright position. It is quite charming - I call it cadaver legs. ;) Anyway, I also vacuumed and mopped the entire apartment - I love hardwood floors. Vacuuming and mopping in a wheelchair should be Olympic sports with points for not tying yourself up in the vacuum cord and not creating tire tracks on the freshly mopped floor.
Mentally I have also been cleaning house. For some reason I was rather delusional and thought that the first year of dealing with all of this medical stuff and all of the changes in my life would be the most difficult. I was wrong. The second year is actually proving to be harder, I think because the true reality of it is sinking in and I have to let go of the illusion that there is ever going to be a simple answer or simple treatment/cure. Also it has been difficult because this illness is proving to be a relentless monster and it continues to progress. It is now impacting the strength in my arms, and I am noticing more changes in my lung function (I do not have the results from the PFTs done in December yet). I have been referred to the Muscular Dystrophy Association Clinic, for which I need to make an appointment, and I also need to follow up with my primary neurologist for treatment of the symptoms - primarily the dystonia, and to assess the upper body weakness. So I have been dealing with the frustrations and the fears, the doubts and the sadness. I have been cleaning away the emotions and the false beliefs that will not do me any good and making way for a new start, for the hopes and dreams and gratitude and joy that usually define my life.
I hope this makes sense. I have every intention of writing more soon, and writing more often now that the thorough housekeeping has been addressed.

I have some really beautiful pictures that I am going to come back tomorrow and add to this post as I am using my new mini computer that I received for signing up with Comcast and all of my photographs are stored on Elphalba the large laptop. Beautiful roses from a real rose garden.
Anyway, I realized tonight that I only write about the more positive aspects of dealing with an illness such as mine on this journal and someone brought to my attention that this does a complete disservice. I am not telling the full story, I am hiding the truth, and I am basically telling lies of omission. Should anyone in a similar situation ever find this journal I want them to be able to read it and know that the hard times are just as normal as the good times, that there are incredible struggles, that there are times where you wrestle with God but that in the end it is still worth it.
Right now I am dealing with a lot of anger - anger at God for allowing this to happen and not intervening with a miracle, anger at my body that continues to betray me, anger at a world that is so inaccessible, anger at the fact that my life was turned upside down like a snowglobe and vigorously shaken and the pieces have yet to fall down around me in any order. I know that this is perfectly normal and a part of the grieving process for the loss of who I used to be. I am also weary. so very weary. Weary of constantly having to be vigilant for complications, for simple things as having to remember to eat and drink, of having to check continuously that the medical care I am receiving is appropriate and no mistakes are being made, of having to be an advocate for myself and face the wrath of doctors and nurses who prefer placid, docile, and unquestioning patients. I am weary of the hunt for a diagnosis and over a year of not knowing, of over a year of feeling powerless to something that has held me hostage in my own body. I am tired of living knowing that at any moment another autonomic crisis can strike without warning and that we have no plan for treating these other than careful fluid administration and time.
A year ago I was certain we would find a diagnosis, treat it, and I would consider on with my life like I always had in the past when a new medical issue arouse. I never anticipated being where I am now, and the permanency of the situation is beginning to really hit me. This very well may be as good as it ever gets and that frustrates me. I am also tired of being sanctified like some holy saint for dealing with this illness "so well" and being so "brave and strong" and doing what others are certain they "could never do". I might be mistaken, but I am pretty sure I never signed up for this. I am living the life that I was given to the best of my ability and I see nothing courageous about that and you would be astonished by what you are capable of doing when it is the only option.
I know that this is not how I normally write and I am taking a huge risk writing with an open heart about the more difficult aspects of living with this disease, these many illnesses, this body that is damaged and malfunctioning. Before anyone worries, I am not depressed and there are countless times in any given day when I am joyful and overrunning with gratitude for all that I have. But the journey is not easy and I would do it a disservice to continue to hide the hard parts and provide a sugar coated reality. No one promised a rose garden, but more than that I think even in the beauty of a rose garden there are sharp thorns that slice at you.
Tomorrow is another day, a day yet untarnished and untouched and for that I am always thankful. Each day is a new start, a new beginning, and a new gift. And I never once have questioned how richly blessed I am, especially with love.

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.

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 loved using the children's book by this name to teach even my little ones how to deal with fear - it is a simple concept book where page by page a monster's face emerges until it is complete via layered cutouts, and then the reader is empowered to make it go away page by page by telling the parts to "go away" until finally only the base remains and you tell it "Go away big green monster!". I even had an awesome hand puppet that accompanied the book so my kids could build the monster themselves using tactile input and real interaction and then take it apart again.
So how come when I yell at this big green monster that is constantly lurking just behind me, he only laughs? I tell him to go away with his spasticity, with his pain, with his sensory loss, with his contractures of my feet, with his dysphagia, with his fear and intimidation but he just laughs. This Big Green Monster has the power of the word progressive, and I can't seem to use the skills of talking away my fears or rationalizing them away to make him go away. In September of 2008 the monster was nibbling at my toes and feet, by October he was also contorting my stomach with dysphagia and nausea, by December he was grabbing at my ankles with abnormal tone and my pulling at my legs with weakness. By January he claimed my feet and was steadily working his way up my legs. By May the EMG testing demonstrated abnormalities throughout the nerves of my legs. Now the monster is impacting my bladder and trunk muscles. Go AWAY Big Green Monster! GO AWAY! Can we call a truce, you stop where you are and just go away? No more loss of sensation, no more loss of movement, no more increased pain and fatigue, no more loss? No more Big Green Monster?!?