I have wheelchair envy. I want a Tank-Chair wheelchair as shown above. This thing is awesome! It can handle snow, like the 14 inches we received this past week on top of the foot or so already on the ground, and its snowing again today! It can handle sand and water so beaches are accessible!Wet, slippery pavement is no problem!  And no one is going to be stupid enough to get in your way when you are driving down the aisle of the local store in one of these!! If I ran over toes in this thing, I would most certainly get the person's attention!! And leave tread marks behind!

As a small child I was hypersensitive to the tags in my clothing. My mother had to painstakingly remove every last reminant of any tag from every single item of clothing before I would agree to wear it. I would hear her grumbling as she picked at seams with sewing scissors after every back to school shopping excursion. But those tags in something new were intolerable to me, I could continually feel them grating against my fragile skin and what to many would be a light touch was magnified to torture. Yet in old hand-me-down clothes that had been through the washer countless times and the tags had been softened with age I did not demand that every tag be removed because they had been softened with time. They were tolerable because they were in something broken in, something that had taken the abuse of the world and worn away the hard edges. It took time for the raw scraping to transfer to a soft and gentle touch; time and wear and use.

I realize after reading comments to my last post that it may come across that I have a huge chip on my shoulder or extremely high expectations when it comes to how others act towards me in relation to my disability. Using a wheelchair, using leg braces, not being able to walk independently - those are all brand new tags in my life. After two years they are not as intolerable as they were in the beginning but they are still no where near as soft and flexible and gentle as the other tags in my life that I have lived with for so much longer. I admit that it stings more when I feel someone react to my using a wheelchair because that tag is still grating on me. I use humor as a huge coping mechanism, and that is why I frequently just laugh at the situations that feel awkward or out of place. I also know that because these tags are not worn soft with time, I need to keep in my heart and mind the fact that most people have good intentions and just generally have limited experience with individuals with different abilities.

But I do also hold society to a high standard, because if we do not have high expectations than nothing will ever change. I will gladly educate and advocate. The inclusion of individuals with disabilities in our mainstream society has come so far, but has so very far to go. Ignorance is not an excuse, as it was not an excuse during the Civil Rights movement, but an opportunity to educate. Sometimes I need to remember that it is an opportunity to educate and ignore the rubbing of the tags. Ignorance is a tag that rubs raw, but it is one that is only softened by education and by teaching those who "don't know any better". It is showing the world what it means, and does not mean, to have a disability. It is working to create a world where having a disability is not equal to having a handicap*.

I hope this post makes sense. I tried so hard to explain what is on my heart in a manner that would be easier to understand.

* A disability is a difference of abilities as compared to a norm. A handicap is when a difference prevents the individual from being able to engage in a desired aspect of society. So it is possible to have a disability but not a handicap, and technically to have a handicap without a disabilty. In the game of wheelchair basketball, being ambulatory is a handicap because you are not used to using a wheelchair and you will struggle to keep up and not end up as roadkill.

I was waiting in line to pay a small fortune for my new KAFO leg braces when I felt a small hand pulling inquisitively at my wheelchair. Before I could turn around, a horrified sounding adult snatched the wee little hand away and admonished loudly "Avery, NO! Don't touch that!" Personally I like it when children are inquisitive about my wheelchair and braces and assorted accessories, so I was a little taken by surprise by the harshness of the mother's reaction. I turned slowly around and caught the deep brown eyes of a child no more than two caught between wide eyed wonder and confusion.

With a truly joyful smile on my face I stared at his Tom Sawyer imp of a face and introduced myself with a resounding "Hi!"
My greeting was returned with a bubbling "hi" and then he decided to get brave. Pointing to my wheelchair he asked "Wheels?!?"
"Yes, my chair has wheels on it. The wheels help me go." I then proceeded to do a few basic maneuvers like a spin and a back tilt much to the delight of Avery.
"Chair has wheels!!!"
"Yes, like a bicycle has wheels."
"Chair has wheels. Bicycle has wheels. Go wheels!"

At that point Avery had decided that this whole wheelchair thing was pretty darn cool and had firmly attached himself to the side of my chair just in case I tried to escape without allowing him a test drive. He was so firmly attached that when the office staff offered him a piece of candy from the creepy germ ridden community candy bowl, they asked me for permission instead of his mother. I quickly cleared up the fact that he did not belong to me, even when he opened his mouth wide to show me the partitally chewed orange pumpkin candy to show me that he had "candy" then "'unkin candy".

By the time Avery left, he had thoroughly explored my wheelchair and asked all of the pertinent questions in his two year old mind. I was no longer a "do not touch" but instead a person with a really cool way to get around. He was fascinated by my wheelchair, but once he got his questions answered and figured it out to his satisfaction he was over it (other than really wanting a test drive) and on to talking about more important things like the pumpkin candies he managed to cute his way into and his new shoes. There was no reason in his mind that my using a wheelchair was abnormal - his mother came close to teaching him that lesson, teaching him a fear of those with differences, fostering a sense of prejudice and discrimination that does not naturally exist in children. I love the way children react to my wheelchair, their honesty and their directness. I love how they get to the point, ask their questions, figure out how it works, and then it just becomes a part of their norm for the person and they go on to other more important things.

In the same arena, my six year old niece also amazes me with her total acceptance and the way she interacts with the fact that I am now using a wheelchair. She asks the most amazing, direct and unfiltered questions and I love her raw honesty and desire to learn, to know, to comprehend. She also really enjoys exploring my wheelchair and figurng out how it all works. We still hang out and play together, and I am still her silly Aunt and she is still my Little Bit. When we are out somewhere she tries so hard to be my helper by pushing my chair or by making sure that people get out of my way, but she also loves when I go downhll and we can race one another. In her drawings of me now my wheelchair is always included just as a part of who I am, and this complete acceptance is amazing to me.

These kids are especially amazing because so many adults can not get beyond the wheelchair to see the person that I am, to recognize that there is more than a disability sitting there. Children do not learn to pity those who have disabilities until they are taught to do so, they do not see a "no touch" sign until it is placed for them, they do not fear differences until someone makes them fearful.

**Photo is of the most amazing almost eight year old boy I have ever had the honor of knowing, one who taught me more than I could have ever taught him.

Recently the Christopher and Dana Reeve Foundation conducted a survey of visitors to its website and web communities and published the results of the Top Ten Most Annoying Things for Wheelchair Users. This stirred up a lot of controversy, including debates over whether accessible stalls were reserved for individuals with disabilities or were fair game for anyone at any time and over whether van accessible spots should be saved for those with wheelchair vans who otherwise can not exit their vehicles. I got thinking about my own experiences, and I decided to make my very own list of Annoying Things About Being in a Wheelchair based on true life experiences. I think I may have done this before, but if so it is time for an update. :)
* Pardon me, do these wheels make my brain look small? - Apparently utilizing a wheelchair for mobility immediately divided my IQ into its square root because the moment people recognize that I am in a wheelchair, they raise their voices up at lease one octave like you do when talking to a small child and they oversimplify their voices. If at all possible, they avoid talking to me and instead try to talk to whomever is with me instead as if I can not speak for myself.

* I am not hearing impaired, but even if I was your yelling would only make you look like an idiot. - For some reason I have yet to figure out, people have some compulsion to yell at me because I am in a wheelchair as if because my legs do not work right I must also have trouble hearing. This one can be entertaining because I enjoy watching people make idiots out of themselves.

* Don't pity me, buy me a drink!- Save the pity for someone who wants it or needs it. My life is rich in all the ways that matter and I am abundantly blessed. Don't compare me to some standard that you feel is the definition of normal or "good". If you feel bad about the situation I am in, talk to me; get to know me, ask questions, learn that it is nothing worthy of pity and that I am just a person with hopes and dreams and good days and bad days like everyone else. Learn about my disability, learn about me - understand but do not feel sorry for me. I am too busy living most days to feel sorry for myself!

*Having a multitude of children is not a disability. - When there are normal bathroom stalls open for usage, it is rude to take and use the one accessible stall because you have a brood of small children. Being a parent is not a disability, it is a lifestyle choice. I can not choose to use one of the regular stalls if I wanted to and so am stuck while you allow each of your children a turn to try to go potty and to flush, often more than once because it is just SO COOL! By the time I get the message to my brain that I need to use the bathroom, I do not have time for you to negotiate a potty treaty that would make the Russians proud.

*If you stare long enough I just might do a trick!- I understand that you may not encounter someone in a wheelchair on a regular basis, let alone someone who uses the type of wheelchair that I do, let alone someone who wears capris and shorts that allow for my AFOS to be visible in summer months. I get that the natural instinct is to look. There is a difference between an inquisitive look and a gaping stare. Gaping stares from small children do not bother me; gaping stares from teenagers and adults are just rude. If you are curious ask a question, I don't mind explaining things and would rather educate you than be a side show freak on display for your entertainment.  

*Do Not Pat Me On The Head. - Enough said.

* This is my dance space spaghetti arms!- Treat my wheelchair as your would treat a part of my body and do not lean against it, grab hold of it, or hang on to it in such a manner as to prevent me from moving. My wheelchair is not there to be a convenient place for you to hold on to on public transportation, for you to lean against, or for you to hold onto while engaged in conversation turning me into a virtual prisoner. Respect my space. Never start pushing my wheelchair without first asking and receiving my permission. I don't run around scooping up people who are walking and wheeling them around on my lap so lets be fair.

* Look at you standing there all Homo erectus! - Avoid the temptation to comment on how well I manage to maneuver in my wheelchair like this is some extremely astonishing accomplishment. I do not praise you for how well you stand and walk.

* By any other name would not smell so sweet - I hate being referred to as a wheelchair. I am no more a wheelchair than someone who is walking is a pair of sneakers or high heels or flip flops. I am not the tool I use to access the environment around me.

* I escaped out the back door- Please do not ask me where my parents are or who I am with at a store or other public location, or if someone forgot me there. I am fully capable of utilizing public transportation and also of managing to arrange for transportation. I am almost 29 years old, and while there are days I can not go anywhere, when I do get out I do not need a constant babysitter. I am still capable and coherent.

* Do you have a license for that thing?- yep, it came in a cracker jack box. If I run your toes over I get bonus points.  

I have a long and miserable history with flat tires, including an infamous incident with a gigantic pothole impersonating an innocent mud puddle and breaking the rim with a shocking thunk. I still drove another several miles on that busted rim, and no I have no idea how I managed to do that but I am female and I don't "do" cars, and since it was driving I figured it couldn't be that bad (see my logic???). So perhaps it was not the best idea in the world for me to have a wheelchair with regular tires. I can not technically check the air in the tires on them because with my stunning and amazing fine motor skills, by the time I got the stupid pressure gauge thingy on right I would have let all the air out of the tire and be able to go "yep, its flat!". Instead I use the subtle system of observation - when my brakes start slipping that is usually a good sign that I need more air.
So I figured it would be a quick stop this morning on the way to the grocery store with my Dad for back up (cart driver) to put air in the tires. He of the more dexterous fingers checked the air in the tires, and my method was right. The darn things needed more air. However, the "Free Air" machine apparently had decided that its goal for the day was not to provide Free Air but rather to "free" air from whatever it was trapped inside. So by the time my father was done wrestling with my wheelchair and the machine, I was able to go "yep, its flat!!". In this cliche of a small town, the other gas station (because there are only two) does not have an air machine. We checked. Neither does the little oil change joint. We checked. After 15 minutes of driving around a very small town, my dad decided the easiest solution would be to just go to his house and have him pull his air compressor out of the garage to fill up the now very flat tires. Of course the air compressor is located in the far back corner of the garage because who needs an air compressor in the great frozen north before say, June? So what should have been a quick 5 minute process took about 40 minutes. But the good news is that now that there is actually the proper amount of air in my tires, it is so much easier to drive and maneuver. Apparently low tires make it feel like you are pushing the wheelchair through wet concrete. What do I know, I am a girl who never even figured out how to put the chain back on my bicycle or put air in the bike tires!

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.

After almost four months of anticipation and negotiation, my as yet to be named wheelchair has arrived! From conception way back in July to delivery this Friday it will have been fourteen weeks of awaiting the gestation and arrival of this metallic bundle of delight. There were times I thought she would never emerge from the womb of durable medical equipment and times I thought I would never see her gleaming purple body, but now she is in the main office of the medical supply company and awaiting delivery to my eager arms on Friday morning. I may shed tears of joy when I first see her, let alone when we take our first spin together. I am certain we shall be the best of friends and she will be come a priceless treasure to my independence and mobility. Now I just need to think of a name for her. While I will not be sending out birth announcements (it seems a bit too quirky even for me), I do have a personality hiccup that causes me to name inanimate objects. My coffee maker is Klaus Keurig, my teapot Gretel the Kettle, my iPod is Serenity, my cell phone is Violet, my laptop is Elphalba, my digital camera is Celeste, and my Car has an assortment of names depending upon its behavior but the most frequently used one is Figment. I find this naming of objects perfectly normal and have done it most, if not all, of my life and happen to know for a fact that I am not the only person who engages in this habit. I am just so excited to finally have my wheelchair and know that on Friday she is mine, all mine!!! Pictures will follow upon delivery!!!

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.