On July 23, 2009 I met with a representative from the customized medical equipment department (I am getting the name of the department wrong, but you get the idea) of Wright and Filipis to order a custon manual wheelchair. The vendor told me it would take 2-3 months to obtain my chair and that after a month I should call to see how the insurance processing is going. Today is 6 weeks later and I called to check the status of my wheelchair order. For the past 6 weeks, my order has been "waiting in line to be processed into the computer" and was only entered into the system yesterday. In other words, for 6 weeks my order was paperwork lying somewhere waiting for someone to pick it up and contact my doctor for a detailed prescription and then submit the paperwork to my insurance company for authrization. For 6 weeks Wright and Filipis did NOTHING with the order for my wheelchair. When I expressed my displeasure, I was told it was first come first serve and my order had to wait in line. That was never disclosed to me in any of the paperwork I signed, nor on the handy timeline of events of ordering your wheelchair that they provided to me. No one told me that I would first have to wait for someone to get around to my order before they even began processing it. If they had I would have gone to a different vendor that would begin processing immediately. Wright and Filipis deceived me by not disclosing this information. While I thought 6 weeks of insurance autorization and perhaps even the beginning of the order were accomplished, NOTHING was accomplished. It is as if I have not even ordered my wheelchair yet. I am beyond frustrated, and disappointed in a company that failed to provide reasonable service on a critical device that my independence and proper positioning hinges upon.

This is a picture of what my new wheels will pretty much look like!! Yesterday was my appointment for my evaluation for a new wheelchair, and I am beyond excited for my new wheelchair! It will be an impatient 2-3 month waiting period as this chair, with all of its customizations and specifications designed just for me is going to be incredible. The change will be unbelievable, like going from a bicycle to a Mercedes-Benz. My current wheelchair has improper wheel position, which causes me to have to expend excess energy as well as soreness just to propel it, and I am fighting against both the wheels and the seat back with each push. New chair? Not a problem! The center of gravity will be properly aligned, with the wheels properly positioned, and the seat back designed so I do not have to struggle against it with each push. Custom gel cushion seating, custom cushioned back cushion, non tip removable wheelies, and custom leg rests that will actually help properly align my legs from hip to foot!! Tires that will not cause me to have to play damsel in distress in the snow this winter, and welded tie downs for safety on the bus. Oh, and the color rocks! It is a metallic purple plum color! Oh, and it weighs about half of this bulk of a monster I am using now!! If you want to see details, go to and click on the side links for things like color (plum craze), tires (the heavy duty tread at the top) and such. I am going to have a sporty, sexy, hell on wheels chair!

Apparently I am getting old. Yes, at almost twenty-eight years of age (and still not consistently passing for twenty-one) I am now having to translate my normal speech for teenagers. I was wedged into a corner of the most inaccessible, cramped and crowded store at the mall where I was trading in games for my Nintendo DS when two tween boys began to enthusiastically play the display model of the Wii that was about two inches from my rear tire. I felt like I was ring side at a boxing match, only a little too ring side as I ducked and dodged the Wii-mote flailing about my head. Finally I had my trades in hand and attempted to maneuver out of the corner.
Me: "Excuse me, please"
Boys: glance at me, then return to playing
Me: "Excuse me, Please!"
Boys: do not even acknowledge my presence
Me: Translating into Teenage language "I will run you over if you don't move"
Boys: rapidly move aside and allow me to navigate through
Apparently something was lost when I spoke polite adult English that became perfectly clear when I brought it down to a simple statement of the facts. They may not understand manners, but they do understand cause and effect - you move, you keep your toes; you don't move, I give you a one of a kind pedicure free of charge. Just like I had to helpfully explain to the teenager behind me in line that I could not move away from the counter unless they backed up and gave me space because my wheelchair has yet to get all go-go-gadget and fly, and the only way out was backwards. Apparently in his quest to own that video game immediately, this logic had escaped him. I was patient and gave him time to figure it out before pointing out that he could pay for his game if he would move for just a moment so I could backup. It was like watching a moment of revelation as this logic processed through his brain. I then made my way to Target to pick up a prescription (which they screwed up - I pity the pharmacist on duty when I go back tomorrow; this anger stage of dealing isn't pretty but I have checked off all of the others) and buy a new charger for my iPod because the other one had a loose wire. I also happened to end up with a new skirt, short sleeve cardigan, tank top, and hat. Go figure!! That translates into I may be stuck in this wheelchair, but I am going to have style and demand that the world see me and not just the chair. :)

I actually made the effort to answer my cell phone for a telephone number I did not recognize this morning, which happens about once in a blue moon. I am glad that I did because it was the medical supply company where I placed the order for my wheelchair on Monday. Note- order placed on Monday, today is Thursday. Apparently they just now realized that the type of wheelchair that the physician ordered for me is a customized wheelchair that requires, well, customization. Therefore they are going to have someone from their specialty office contact me regarding my exact needs and arrange to come out to the house for measurements and such. Also, they may need further paperwork from my physician to convince the insurance to pay for the wheelchair. Why not, by now my medical paperwork has cleared an entire forest for the paper it is printed on. Besides, I am pretty sure that spastic paraparesis, dysautonomia, dystonia, ataxia, and occult spina bifida (resulting in skin breakdown from the pressure of sitting in my current wheelchair) are going to be sufficient diagnoses to qualify me for whatever fancy wheelchair he ordered and I select. I am just a bit surprised that it took three days for them to recognize that this was not an off the shelf wheelchair order (hey, I have never ordered a wheelchair before, I thought it would be custom but then they said it was standard so I went with it) and would need to be a custom order. After all, they do this on a daily basis. I am excited that I will be able to make decisions regarding things like color, seating, positioning, and support. For color, I know that I want something bright and vibrant. Purple and red and orange keep coming to mind. Of course, there will be customization once I receive the wheelchair as well. :) Can I find a bumpersticker that says "I don't brake"? Or better yet "Beware of attitude". So sometime in the next few days I should receive a call from the specialty office to begin the process of arranging the custom order.

Top Ten Ways to End Up My Hood-Ornament

10. Yell when you talk to me (because apparently since I am sitting down instead of standing, I am also hearing impaired)
9. Ask me what grade I am in or when school starts again (because I am almost 28 years old and would love to securely pass for 18)
8. Tell me how well I "drive" my wheelchair ("thanks, you steer those sneakers pretty well too!")
7. Let your ignorance show ("what's wrong with your legs?" - nothing, what's wrong with your manners? or "why do your feet point in all pigeon toed?" - I'm a ballerina.)
6. Create a business that is not accessible due to stairs, aisles that are too narrow, inaccessible bathrooms, or products that are placed too high (I would rather take my business elsewhere than have to repeatedly play damsel in distress, it gets old quickly)
5. Assume that I have cognitive impairments and speak to me as if speaking to a three year old ("Someone is buying new shoes today!" Yes, and someone is going to put one of them up your arse lady! My IQ did not suddenly drop when I sat down in the wheelchair...there is no magic force of the seated position that destroys cognition. Besides, you work at Walmart, get over yourself! )
4. Help me without asking my permission (Pushing my wheelchair without asking me is like someone suddenly picking you up and carrying you - they may have the best of intentions but unless they are damn sexy, you would prefer to keep your own feet on the ground and remain in control)
3. Park in a handicapped parking spot when you have no legitimate need (Ignorance and Laziness are not disabilities, even though they are really annoying)
2. Stop and stare at me as if I have managed to escape from a circus sideshow (Really, have you never seen anyone in a wheelchair before? If not, you need to get out more! And if you have, they all work on the same principle, and like it or not us "damaged folk" are going to continue to use our rights, so suck it up and deal)
1. Walk or stand in front of me and refuse to move (I love playing bowling ball, and I have earned several strikes already)

Yesterday was my appointment with Dr. A (who, now that I have seen his name in writing should be Dr.E but I am too lazy right now to change that) for an evaluation to obtain his expert insights into the movement disorder aspects of the mystery that has become my life. Once again I am incredibly thankful for a doctor who does not believe that MD represents Medical Deity and who realizes that, as the person trapped inside this body, I have a valuable perspective. He had me perform the wide range of neurological party tricks, most of which I suck at (note to self - if I ever drive again and am stopped for suspicion of drunk driving, I am totally screwed). That whole pointer finger to the nose thing looks so easy until I try to do it without my arm muscles shaking. And it sounds so simple to hold my leg up and not let him push it down, until with two fingers he slams my leg down over and over. Talk about ego bruising...a year ago I was able to pick up, carry, position and provide support for children with severe disabilities who weighted up to or even more than 50lbs.
So after his evaluation, he discussed his findings with me. Dr. A is certain that this is not a primary movement disorder like a primary dystonia or parkinsons. He is also certain that it is complex, complicated, and rare. His words "were you to present to us without any medical history and just your current symptoms, this would be a very complicated and difficult case. When you add in your history and the dysautonomia...". I saved him at this point and explained "I never seem to do anything simple. It is always rare, complicated, and an extreme challenge. Apparently it is against my genetic capabilities to follow a simple textbook anything." He laughed, but also agreed. So now that we know what it isn't, we are left with more questions. His opinion is that it is most likely something impacting my spinal cord given the presentation with my lower extremities, and he is concerned because I do indeed have increasing spasticity and tone in my upper back/shoulders which means that it is worsening. He mentioned a disorder called "stiff person syndrome" that they will be checking for by blood work, and also said he is concerned that the autoimmune disorder I was diagnosed with at 11 (and that has been greatly debated since then) could be attacking my spinal cord. He wants me to have a spinal tap, which is tricky given the fact that I am on blood thinners but actually better to do with me on the injections of lovenox than if I were taking coumadin. I have had a spinal tap before, about 9 years ago, and based on that horrid experience in which they missed and then ended up twisting the needle and as a result of their errors I ended up bleeding into the base of my spine I am going to agree only upon the condition of being unconscious. I can deal with the pain, but I find that adding unnecessary pain to an already painful life is unnecessary. Dr. A is now going to be a part of my neurology team, with Dr.CH as lead neurologist and Dr. SN as consult.
One huge success from yesterday was that I received an order for a new wheelchair. The one I have been using is a rent-a-chair that has horrible positioning and actually causes severe pain if I use it for more than an hour or two at a time. Part of this is because of my hip positioning in it, but mostly it is because I have occult spina bifida (the bones at the base of my spine are malformed) and the defect is a boney protrusion just below the layer of skin that receives pressure whenever I sit upright. I have not developed an actual open sore, but I have developed inflammation and scabs on this area from sitting. And as a result of the spina bifida, I have significant arthritis in my lower spine which also makes sitting on a poorly supported and cushioned surface painful. So yesterday after my appointment I went to the medical supply store and ordered a lightweight tilt in space manual wheelchair that could be here as early as Friday :) I had to call and have the Dr. fax them with detailed information regarding seating and/or cushions for seating but it should be taken care of as I have not received a call otherwise. New wheels!!! But to be completely honest, it was hard to order the wheelchair because as long as I was using a rented chair it left me with the illusion that I was only using it on a very temporary basis. Now that a wheelchair has been ordered and purchased for my personal use, it feels almost like surrendering a battle to this and admitting that no one things I am going to walk again any time soon if ever. That is hard, and it hurts. I am not giving up, but sometimes being hit in the face with reality is rough. So instead, I am going to figure out a way to make my new chair absolutely awesome - pimp my wheelchair anyone? :)

Yesterday at the mall I had the opportunity to practice my favorite new sport - wheelchair bowling. Basically, this consists of me serving as the rolling bowling ball and individuals who are too ignorant or rude to realize that walking directly into my path is a bad idea serving as pins. Small children and the elderly do not count. I figure I am not wasting the skin on my hands that is required to try to suddenly stop my chair, even with gloves on, because someone is too ignorant to realize that I have the right to be there and might not be able to stop within a 2 second time frame so they can walk in my path. Also, I say "excuse me" once, and then I figure if I know you heard me you must want to be a bowling pin. :) So yesterday I was cruising at a good speed down the hallway of the mall, trying to make it to the exit where the bus stop is in time to catch the bus. A group of teenage wanna-be punks decided that it would be a great idea to meander directly in front of me and then just kind of slow to a stop in the intersection. These kinds of teenagers greatly amuse me because if you speak with them they will insist that with their torn, baggy jeans and black nail polish and spiked hair and converse high tops they are rebelling and being a completely unique individual. However, each of their friends also happens to be rebelling and being completely unique in just the exact same fashion. this coincidence escapes them. It also escapes them that if they were really being successful at being unique and individualistic there would not be stores that catered to them because there would be no "them". I love the mentality "I am being an individual and I am being unique, just like all of my friends!". So anyway, a group of these punk clones was directly in my path and I was going slightly over what is probably considered the speed limit. I swerved and did make an effort to slow down, but I also felt the need to educate them in the ways of the world. So as I narrowly missed several sets of converse high tops and pale legs sticking out from ultra baggy shorts, I announced "This thing does not come equipped with brakes. It is pretty stupid to walk right in front of me and not expect to get hit!" Most of the clones - sorry, unique individuals, were absorbed in their conversation regarding some musician but one of them who just missed losing a few toes heard me and began to laugh hysterically. As I wheeled away, I heard him calling out to his minions, um one of a kind friends, "Hey guys! Did you hear her?!?" So they may be unique punk wanna be clones, but hopefully they are slightly more educated and less likely to cause a wheelchair crash clones. I am Hell on Wheels, Educating the World one group of Bowling Pins at a Time!! :)

He waved his pudgy little hand at me and squealed in delight from the confines of the child seat in the front of the shopping basket. While his mother was preoccupied with selecting between cold medications, he carried on an enchanted "conversation" with me through waving and cooing and his brilliant brown eyes. In his eyes, I was a marvelous wonder of a "big person" conveniently seated at his eye level for the exact purpose of engaging in tales of the world as he experiences it. When his mother finally threw her selected medication into the cart and made her way out of the aisle, she never even noticed me even though her son continued to call and wave and bounce in his seat until they rounded the end of the aisle.
She peered at me with the appraisal of a child who is processing something new and trying to figure out how to make it fit into her knowledge of the world. As we waited for the elevator, she alternated between fidgeting with her toy cell phone and sneaking looks in my direction. To her five year old mind, I was a new encounter and she was fascinated but also trying so very hard to avoid being rude. I can only guess, but I would suspect that her past experiences with individuals who use wheelchairs has been limited to either medical environments (i.e. hospitals) or to much older individuals and at a very young looking 27 years old navigating the world independently I defied all known rules. I met her glance with a warm smile, and she shared her shy smile with me. I had to laugh as she repeatedly looked at me, in my wheelchair, and then a group of elderly individuals, some of whom were also in wheelchairs, as if playing the old Sesame Street game "one of these things is not like the other".
They stood before me blatantly staring at me, yet refusing to step to one side or the other of the aisle so that I could proceed. Their looks were not inquisitive in nature but degrading and repulsed. At about sixteen years of age, the four of them had the developmental skills to comprehend the fact that people have disabilities but apparently were lacking the social learning as to how to interact with people who were not just like them. My patience does not extend to ignorance, and so I offered them a simple choice: move or I will see just how many of them I can take out in one good roll down the aisle in wheelchair bowling. Apparently this made sense to them as they grumbled and shot dirty looks at me, but did rapidly discover that it is possible to walk without occupying the entire width of a store aisle. I do wonder if their little necks are sore from trying to stare at me behind them as they walked? :)
Three different ages, three different interactions, three different perspectives of me as a young adult who uses a wheelchair within the course of one day. Each one left me laughing, in a very different and unique way. Laughing at the innocence of a toddler, at the perplexed struggle to comprehend written on the face of a preschooler, and at the ignorant egocentric behavior of teenagers. Laughing at what it means to be human.

On Sunday, Prince Charming escorted me to explore the University of Michigan law school campus, as I am seriously considering and slowly preparing to apply to law school in order to become a legal advocate for children. The campus is breathtakingly gorgeous, and somehow a natural fit in a way that even after 5 years and graduation Vanderbilt never was to me. He really wanted me to see the reading room of the law library as it is stunning in its design, and we are both greatly impressed by the beauty of design and history. We located the correct building and began to explore. My first observation was that each window in the series of hallways where we were has a stained glass insert representing some aspect of law. Interestingly enough, the insert for "betrayal" showed one man impaling another upon his sword while the insert for "murder" was far more abstract and less graphic. I also liked the image of a lawyer apparently entering a hospital or home with an old fashioned ambulance just behind him. Even many years ago when these windows were designed, the reputation as ambulance chasers had been established. :) We then decided to try and see if the reading room might be on a different floor. It was at that point that I discovered what must certainly rate among the top 100 creepiest elevators in the state, and fairly high in the nation as well. First, the elevator would not allow the button for up to be activated, only the down button even though there were multiple floors above. This bothered me, because any elevator can go downward even if it is broken, it is just the speed of the ride and the quality of the stop at the bottom that varies. I was not interested in testing out that theory. When the elevator doors opened, they revealed an elevator that might have been large enough for me to enter in my wheelchair but I would have been scraping against the walls and my footrests may have been in the way of the door. There was no way on earth anyone else was getting on with me, but that was not an issue because I was not getting on that thing! The only elevator scarier than that one that I have encountered is the antiquated elevator at the Peabody College Education Library which actually requires you to close a grate and a door before it will work and it also is approximately the size of a shoebox. The Education Elevator also had a neatly printed set of directions taped on the wall informing riders of what to do "When" the elevator stopped working - not if but when. I think if I end up going to law school I may need to learn how to go up and down stairs in a wheelchair :) Either way, it is the sudden stop at the bottom that I am worried about!