Bigger Than My Body

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

Pancakes

I made a perfect batch of pancakes for dinner, and was singing and "dancing" to celebrate this accomplishment. You have to understand that I have issues with pancakes, or rather pancakes have issues with me. I first learned to cook pancakes way, way back when I was in high school at the house of one of my best friends. Cooking was done for survival in my house growing up, not for enjoyment. So my friend and her family were shocked that my cooking list at age 16 was limited to spaghetti, scrambled eggs, grilled cheese, ramen, and anything microwaved. Thus they added pancakes to the list. The last time I made pancakes was back in high school. I have my family attitude that overall cooking is a lot of work and is done for survival, although recently I have learned how to cook many new things and been successful. So after I moved into my apartment I decided I would have an "easy" homecooked dinner and make buckwheat pancakes for dinner. Once the smoke cleared and the smoke alarms stopped sounding about 30 minutes later, all of my neighbors knew that I had managed to singe a batch of pancakes. For weeks I had little old ladies coming up to me and asking me how my pancakes turned out. Cute granny, real cute. So then I won an electric griddle at a Christmas party I attended with my Stepmom and thought that maybe the issue with the pancakes was the frying pan from before I was born that I had used. Another batch of buckwheat pancakes was mixed up and although I dodged setting off the smoke detectors this time, my success was still null. I mumbled inappropriate words under my breath as I threw the package of unused mix away and swore off pancakes. Until today. I had purchased Bisquik pancake mix, the simple and no frills not so good for you but hell of a lot easier to use stuff I grew up on, and I decided it was time for the third and final go round with pancakes. I also should mention that cooking just about anything is a huge endeavor as it is because my kitchen is a standard small galley kitchen and nothing is modified for a wheelchair. I can stand for short periods of time, but too long and my legs turn funny colors and I lose the ability to keep them under me. Cooking is an extreme sport. So using the Bisquik and the electric griddle I made a complete batch of perfect pancakes - not one was burned, not one was too doughy!! I have leftovers in the fridge to microwave tomorrow and leftovers frozen for another time. I was a pancake making marvel. I proved that I could do it, and I had a delicious dinner at the same time. And in the end, you know it was about so much more than the pancakes.

My Little Bit and Flashback Photos

 

Almost 4 (2008)

 

A Makeover

 

Puppy Love

 

Ice Cream And Swimming - a Perfect Summer Day

 

Troublemaker Almost 5 years old (2009)

 

My brother and I (somewhere between 2 and 3)

 

My Brother and I (Somewhere around 6 or 7)

Genius Girl Strikes Again

My family lovingly teases me about the fact that the standardized testing I underwent in school routinely placed me at the two standard deviations above the normal which qualifies as "genius". Usually the teasing begins when I do something completely absent minded, or when I am trying to use my non-existent visual spatial skills. I can readily answer advanced linguistic analogies but I can not ever figure out which direction is north. Don't even ask about parallel parking a car! My brother has decided that my brain is so full of "book smarts" that there is no room for the everyday knowledge, like finding your way out of a paperbag with the end cut off. :P The term "genius girl" is a loving tease most often used in a sentence after I have done something illogical or missed something blatantly obvious or failed to solve a simple logical issue along the lines of "way to go genius girl!" I use the line with myself all the time, especially because I find it hysterical that anyone in their right mind would consider me a genius - me who can't ever find two shoes that melt or manage to cook a simple meal or use a mental map. So my Genius Girl moment of the day was when this morning, half asleep, I accidentally took my night time medicine - complete with sleeping medicine- instead of my morning medicine. No wonder I spent all day sound asleep!! I did not figure out the mistake until 10pm this evening which shows how on top of things I am today. So now I am waiting for a regularly scheduled dose of night time medicine taken at 11pm to work and overcome the fact that my brain just woke up at 10pm so I can get some appropriately timed sleep. My brilliance astounds me!

Haiti on My Mind

Where is God when the children die
When a meager existence is shattered to rubble
And an entire nation lets out agony’s cry

Did he close his eyes
Did he turn his head
Did he ignore the suffering voices
Of both the living and the dead?

Was this the land of the truly forsaken
Those born without to die without
And in between to struggle and anguish without
Is that the truth of what their lives are about?

Was God truly absent
As the world crumbled and cracked
Was he preoccupied with other affairs
Or is it perspective we all lacked?

For God felt every moment of pain magnified
He cried along with every single tear that has been cried
His hands were beside those digging out the survivors
And his arms were wide open to greet all those who died

His promise is in every prayer sung in the darkest of nights
Hope comes in one volunteer, one life at a time
Compassion overflows in the giving, the sacrifices of an entire world
Love is living and breathing in humanity at its prime

God was there from the moment their world fell apart
In the rescuers he finds hands, in the journalists he finds voice
From the doctors he finds healing, from the populace he grows hope
He is there, but it is our presence that is the choice.

Cleaning House

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.

Betwixt

Betwixt one year and another, at the dusk of one expanse and the dawn of the next, the ending of a passage and the departure on a new voyage is time for both reflection back and anticipation of the new.

Reflections:
This past year has been filled with events and circumstances I never could have imagined. In January when I traveled from Virginia to Michigan, it was for a 3 month recovery period from the mystery illness that had so sickened me and then I was going to return to work. No one could have conceived of the fact that at the end of the year I would be considered disabled, reliant upon a wheelchair, and diagnosed with a yet to be identified progressive neurological disorder. Sometimes I think it is better that we do not know things in advance but rather find them out one day at a time. I never imagined that I would be "allowed to resign" from the job I loved most in the world, but be proud of the reasons that I was given the options of resigning or being fired. Beyond excessive absences during my time under the Family Medical Leave Act (illegal, but who says the government plays by their own rules?), I was disciplined for standing up for the rights of my children for equal treatment, dignity, and an education. If that makes me a troublemaker, then I would rather lose my job for what I know is right than keep it by being silent and allowing children to be treated as side show displays (I fought against having each class in the school come into my classroom to "meet" (stare at) my kids and ask whatever questions they wanted in front of my kids- my kids are not teaching tools, they are not a circus side show, they are not an exhibit) and receiving babysitting rather than an education. Of course, now I could not physically do the job anyway, but I am still proud that my principles stood. And they stood to the end when I assisted two families in fighting for proper IEPs and placements and services at the end of the school year as I was still officially the classroom teacher through July 1. E mail is a wonder invention indeed. I never would have imagined that this year, amidst all of the medical mayhem, I would fall in love with someone nor that I would end up walking away from him. Not that many years ago I would have been so eager to become what anyone wanted me to be that to walk away would be unthinkable. But when "Prince not-so-charming" refused to promise that he would not use my disability against me in our relationship (AKA I told him I did not care if he later decided to break things off because he decided he hated redheads but I needed to know he would never use the excuse of my illness because I was totally honest with him) I instantly realized I deserved so much better. It is a pretty shallow man who can not agree to not use my illness or disability against me in a relationship and I don't do shallow. I never would have imagined that I would come to appreciate my wheelchair as a tool for freedom and independence instead of cursing it and detesting it. Now I realize that I am more handicapped when I use my crutches or a walker because I have to rely on other people to do everything for me - carry things, pour me a drink, move objects out of my way- than I am when I use my wheelchair and can be independent. I never imagined the beauty I would discover along this winding and rocky detour in life, beauty I would never have known had life not veered off the course it was on not so long ago.
This year's greatest moments include the first time I was able to go to a restaurant, order regular food, and eat it without gagging, retching, or choking. I will never take the simple act of eating for granted again. When I moved into my own apartment, I regained my sense of self and independence and felt a victory over this disorder that has tried but failed to define me and restrain me. Ten incredible days spent with the most amazing friends in Virginia that reminded me to my soul that I am still me, and that also overfilled my heart with the joys of cuteness and the magic of a one of a kind treasure of a boy. Discovering the freedom of swimming and the ability of water to provide my body with a place where movement is easier and my muscles are less inhibited was magical. Watching my Little Bit dance and live her life as a musical never fails to delight me and fill the part of my heart she claimed 5 years ago. Capturing a sales clerk in a verbal headlock when he ignored me and went to serve a male customer who had just walked up to the counter by asking him "Are you ignoring me because I am female or because I am in a wheelchair?" and watching his reaction (my favorite of many really good quick witted comments this year). Dancing in my living room and feeling the same joy of movement, the same thrill of expression, the same energy and silliness on wheels as I ever did on feet.

Anticipation
I have a little black velvet bag that I carry with me wherever I go. It is in whatever backpack or purse happens to be hanging on the back of my wheelchair at any given time, and has been for 3 months now. Inside of the bag are 5 small stones each inscribed with a word. They are "wishing stones", positive words given a physical form so they can be held and felt and clung to when necessary. They are my reminder that the abstract is just as real as the concrete, that just because something like faith does not have a solid form does not render it nonexistent. So I am going to take each of these solid words and use them to write an anticipation, not a resolution but more of a hope or a purpose or a vision for the upcoming year.

Wish There is nothing more properly the language of the heart than a wish. Robert South
Wishes are the fires that keep the stars burning at night. They are the longings of the heart that we may or may not be brave enough to put into words. It is my desire to always have enough wishes to light up the night sky and to have the courage to declare them one by one. Wishes of peace, of joy, of healing, of love, of miracles, of possibilities. Wishes are prayers with fancy feathers.

Create It is better to create than to learn. Creating is the essence of life! Julius Caesar
Life provides you with a certain framework in which you must operate. Whether this framework is a limitation or a canvass for creativity is determined not by life but by how we respond to it, what we choose to create. We write our own narratives, paint our own backdrops, and frame our own snapshots. I seek to write a narrative of peace and joy and gratitude, I seek to paint a backdrop of beauty, and I seek to frame the snapshots of my life in love and laughter. I also know that through creation our true self can be expressed and communicated. This coming year I want to devote more of my time to creating- creating memories, creating acts of love, creating expressions of myself through writing or art, creating the person I seek to be.

Strength One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity. Albert Schweitzer 
For so long I confused strength with the ability to live without needing help from anyone. That was not strength, that was pride and I learned that lesson in a very painful manner. Strength is having the world fall down around you and wanting to surrender to the chaos, but choosing to pick the pieces back up and put them back together again. Strength is a choice. You can choose to give up, to give in, to become defined by the obstacle or you can claim your ground and hold yourself as something more. The choices may be minute by minute, hour by hour, day by day and to the outside world they may appear insignificant but to the warrior they are triumphs. It is my longing to be strong enough to never allow the world to define who I am or what I am, to be strong enough to never surrender my passions in life, but to never confuse strength and pride for it takes great strength to acknowledge when you need help.

Magic Genius is another word for magic, and the whole point of magic is that it is inexplicable. Margot Fonteyn

Magic is living with a sense of wonderment and belief that there are aspects of life that go beyond our comprehension. It is appreciating the small delights with great joy and living with a heart and mind open to endless possibilities. What some call magic others call miracles. To live with magic is to be fully alive and to be open to all of the wonderment, mystery, excitement, and awe that is life. May I never lose the magic of life, may I never cease to celebrate the glory and wonder of the smallest delights, may I never close my heart or my mind to the awe of that which is life.

Dream Dreams are illustrations from the book your soul is writing about you. Marsha Norman
   
Dreams are our greatest desires in life, our passions given living form, our wishes with flesh and blood. A life without dreams is a life that is not being lived. Dreams are messengers of purpose. Often our greatest dreams reveal our strongest passions and that which will give purpose and meaning to our lives. No dream is too grand nor to small, no dream inconsequential. Dreams nourish the soul and propel us ever forward to seek who we are meant to be. For many months I was afraid to dream, but now I am beginning to feel secure enough to allow myself to dream. I hope to fill my life with dreams that push me to succeed, to seek that which will nurture the purpose and meaning in my life, to nourish my soul and set me aglow with possibilities and belief.