I couldn't sleep - probably something to do with the two, 2.5 hour naps I took today- so I decided to do a round up of some of the best of human stupidity that I have encountered recently.

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At the Target Pharmacy counter a woman has spread a dress in a dry cleaning bag, a Victoria Secret bag, a Bath and Body works bag, and her purse. I am waiting patiently behind her to pick up my prescriptions as she pays for her meds and gathers up her stuff. Then we have the following conversation:

Her: Oh, I am so sorry, I am completely in your way!
Me: Don't worry about it. I am usually the one getting in other people's way, its a gift, so I totally understand.
Her: Oh yeah, because of your wheelchair.

Excuse me? Does she want some Ketchup to go on that foot sandwich? Did she just tell me that I get in the way because of my wheelchair?

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I called the local bus company to schedule a special handicap accessible bus for direct transportation.

Bus Operator: Are you in a wheelchair?
Me: Yes, I use a wheelchair.
Bus Operator: Do you have a disability?
Me: Nope, the wheelchair is just a fashion accessory.

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I had to complete a urine analysis for a bladder infection that is refusing to die. After giving me the very familiar cup to pee in, I had the weirdest exchange with the lab technician.

Tech "Okay so how do you want me to help you?"
Me "Uh, thanks but this is definitely a one person job. I have it under control."

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Riding on the bus I had noticed an older woman staring at me, but I figured if she had nothing better to do with her time then she was welcome to stare. My legs were hurting after having been strapped in for a few hours, so I leaned down and unbuckled my foot restraints (I am not wearing braces at this time as they are in the process of being made) and allowed my feet to rotate into their natural position. As my legs and feet moved I heard a gasp from the old woman and looked over to see her turning eight shades of white. Apparently she had assumed my legs did not move and so when they moved it startled her meddling little heart half to death.

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Again on the bus, I had the following exchange with the driver.

Driver: "You, the wheelchair, where are you going?"
Me: "You, the legs and loafers, I am going to X."

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These are just the highlights that I can remember. It is a dangerous world out there, and apparently I bring out the stupid in people. :)

It is time for me to come clean about something, a deep dark secret that I have been to ashamed to share with anyone before. Right now I pay a very sweet woman to do my laundry because the facilities at my apartment complex are the antithesis of accessible, but when I do my own laundry I do not sort the clothes the right way. There are no "colors", "darks", "whites" and "delicates". I do laundry like a guy; there are "could be reworn", "dirty, best wash before wearing", "filthy", and "it is crawling to the washer itself". It all gets thrown in one load that I wash with cold water to prevent bleeding of colors and because I am lazy eco-conscious that way. Everything gets dried on the same setting - Dry- unless it has to hand or lie flat to dry in which case it is probably not in my wardrobe. But what astonished me today was the fact that there are very specific and detailed ironing instructions on my underwear!! I don't even own an iron after a few too many singed fingers. My ironing consists of shaking the wrinkles out and hanging it up so the rest "fall out"; when desperate I will press with a big, heavy textbook. Who irons their underwear? And better yet, WHY? Your arse is not going to be impressed by the nice creases in your tighty whities. Just like my socks came with ironing and hand washing instructions. Seriously? They think I am handwashing socks and then ironing them? So far they have lived through the washer and dryer and look fine without an iron. I can make a decent grilled cheese sandwich using an iron though (college skill), so at least if I ever own one it will be good for something!

I am somewhat modest in my choice of clothing, believing that I can have my own sense of style without needing to have even the imagination showing. In the past I have been incredibly shy and self conscious, but for some reason I have found a new confidence and assurance in who I am since discovering my life on wheels. Not only does this make dealing with the frequent stupid comment easier, but it makes life in general more enjoyable. As a result of the many body changes from my illness, I have needed to purchase multiple wardrobes including undergarments. I made the mistake of purchasing a "7 styles in 1" bra from Victoria's Secret because at the time it was comfortable and seemed highly functional. What I failed to take into consideration was the fact that in order to serve 7 styles, the straps were removable, and that being in a wheelchair my arms, shoulders, and upper body move a lot more than usual. In fact, I can state with documentation that they move enough to cause both bra straps to come unhooked from one of their two fastening locations, causing a bright pink bra strap to dangle out of each of my shirt sleeves for all of the world to see while wheeling in a store. There is no dignified way of dealing with this situation. There is no dignity in this situation. I surrendered and just went for the reach up my sleeve and shove the dangling strap down my back route. There were a few guys who found this process highly entertaining, and I was tempted to collect money for the free show but by that time I was blushing as pink as that blasted bra. Normally I would have ended up humiliated for life and most likely in tears of embarrassment. Now I just ended up laughing hysterically at the entire situation and how I managed to break free of both straps within the same short time period. Apparently Victoria's Secret is not always such a secret...sometimes it is a bright pink flag flapping in the wind out from underneath your T shirt sleeves.

Did you know that the concepts of tired and exhausted actually have multiple levels and degrees to them? That there is a complex and complicated system of quantifying these ideas for which the English vocabulary is seriously lacking? Well today, free of charge, I will offer the Cliffs Notes edition on degrees of exhaustion, or layers of tired (depending on if you want a pop culture reference, or a classic literature Dante reference).

1) Tired- you could continue what ever activity you are engaged in for a while longer, but it would be more comfortable to sit down and rest; with proper motivation you can find the energy to get up and going again

2) Drained- you are mentally tired as well as physically tired and are uncomfortable unless sitting or reclining

3) Sleepy- you are nearing the point of needing to sleep, and activities are becoming difficult

4) Groggy- it is time to sleep, your ability to focus and concentrate is gone and you are comical to observers as you are "sleepy drunk"; this is a great time for those not groggy to engage you in a conversation and laugh hysterically at your answers

5) Exhausted- you may or may not be sleepy/groggy but it is a physical effort to move your body; you debate whether or not you really need to go to the bathroom that badly because of the amount of energy required to get there and back; you ignore itches because scratching them is an effort

6) Beyond exhausted- sitting up requires vast amounts of energy which you do not have, and you discover that odd body parts like fingers and eyelashes suddenly weigh a lot; Activities that involve movement are a joke and you long to be just tired. You watch enough TV and DVDs to reach a point of detesting most programs, and you actually wear out an iPod from overuse listening to music and audiobooks. Sleep does not change this state, you fall asleep beyond exhausted and wake up the same way - sort of like a really warped version of ground hog day. And there is not enough Starbucks in the world to create the necessary energy.

My energy levels fluctuate between days last month when I wheeled myself 1 1/2 miles home from the store to more recently when I have been bouncing between exhausted and beyond exhausted. I keep telling God that I have too many things to do to be tired, and He keeps laughing and reminding me that this whole thing is out of my hands. Sometimes it is a little annoying, the whole "God is always right" thing! It makes debating and arguing in prayer a bit one sided and predictable. Not that it stops me or anything though! :) Today is totally my fault because yesterday I pushed myself far beyond the limitations of my body in order to prove a point to myself in cooking dinner. The cost benefit analysis at the time said it was worth it, and I still agree. Besides, I am too damn stubborn to play by the rules of this body. I am still the one in charge here, regardless of the coup it is trying to throw on the government. But for today I am curled up on my bed watching DVDs and pretending that it is because I am that into them instead of being at level 6. :) Denial is more than a river in Egypt!

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. :)

So in small print on the medical information for the Keppra that I have been diligently consuming twice a day for a week now, there is a mention that it has the potential to cause extreme mood swings. Thank God, I can cancel the exorcism I had scheduled for Sunday evening! That info needs to be printed in size 16 font on the medication bottle, only worded differently: "Medication will likely create a raging bi*$% who makes PMS look like a delightful evening of family fun". I fully admit to having the temper that matches my naturally red hair, but it rarely shows itself except in direction towards mechanical equipment (my car is named Belle or useless piece of SH*% depending on how it behaves, for example). This week? My poor mom has been ducking and dodging sarcasm bombs and walking through a mine field every time she came within 10 feet of me. I thought it was a combination of my sleep schedule being messed up, increased pain, and total frustration. Then I read the fine print and learned that for Keppra, I am actually rather charming! I have not acted aggressively or attempted to harm myself, which apparently earns me bonus points. And doesn't it make perfect sense for a medication used to treat neurological conditions to screw with your ability to cope? Since I still have a full morning dose in my system, I am taking my broomstick to the mall to pick up my new medications and may the Lord protect anyone who accidentally triggers one of those mines!

So my vampire was not a sexy man, transformed at the peak of his youth into a specimen of otherworldly beauty and power. And my vampire could not have protected me from anything more dangerous than a mosquito. But she certainly was thirsty, and she had no difficulty draining me of a decent amount of my blood. I rolled into her laboratory, all innocent with my little order slip from the doctor on my lap, and suddenly she gets this glint in her eyes. She rushes off to the back room, where I hear her shuffling through textbooks and calling a vampire reference laboratory to determine the accurate method of blood draining required for the most obscure tests. Then she returns to the room with an evil little smile, and I begin to wonder whether or not this is such a good idea. One by one the vessels for my blood are lined up and I begin to count them. 1, 2, 3, ...12, 13, 14, 15. Ugh! She must be thirsty, we are tying my all time record of vampire blood draining and going for 15 tubes of blood at once. I must give her credit, her aim with the "bite" was impeccable and in just one attempt a solid vein was tapped. And then the harvesting began. I swear I saw her licking her lips as she changed out the tubes, watching them fill with my deep red blood. Finally, about 5 minutes later and a pint lighter I had met the required quota and was patched up with gauze and tape. As she juggled enough of my blood to feed a nest of vampires, I headed for the door before anyone got any ideas for "extra" tubes or "dropped vials". Besides, it is a little creepy watching someone carry around an armful of your blood, even if they are a vampire. My next date better arrange for alternate dining, because I am not a living catering service and besides, it is going to take a bit for me to recoup that donation. :) Based upon the absolute rarity of most of the tests, and the fact that the vials have to be sent out to vampires at multiple testing sites (including U of M and potentially the Mayo Clinic), I do not expect to hear back regarding the findings or vintage of my blood for a week or two. Bon Appetite!

When the ER doctor admits he has no clue what to do with you and so will be going with the standby treatment of fluids, monitoring, and time

When you have multiple doctors in the same specialty (three neurologists, two cardiologists, etc.)

When the pharmacist asks you about the side effects and interactions of your medications

When the pharmacy knows you by voice on the phone and greets you by name when you pick up medicine

When your cell phone contacts have more medical numbers than friends and family

When you have to spell the name of your medical condition and explain it to highly qualified medical professionals

When you carry a notebook with a separate page listing allergies, medical conditions, and current medications because you are tired of writing it out at every office visit and trying to keep it all straight is a feat of mental Olympics

When the phlebotomist needs to sit down when drawing your blood because she starts to feel woozy

When you can take a handful of pills without a problem but choke on a chewable Flintstone's vitamin

When you know how to shower with an IV in your arm, oxygen tubing in your nose, and the inability to stand independently…and look forward to this as a semblance of normalcy

When you realize that crimping the IV line to set of the alarm works a lot faster than pushing the nurse call button, and you use this to your advantage when you have waited over 45 minutes for anti-nausea medication or to be allowed to go to the bathroom

When you can identify by taste more than 6 different intravenous medications (yes, you can taste IV medications - vitamins and Heparin flushes taste particularly nasty)

When you have no problem calling out a doctor and informing them that MD does not equate to Medical Deity

When you can keep track of the pecking order of physicians and have will keep them in line by reminding those with "just out of school egos" that they are still practicing with training wheels

When you do not hesitate to inform a nurse that he needs to get his butt back out in the hallway to wash his hands, then put on gloves before administering anything into your IV - and then discuss protocol with his supervisor

When the phlebotomist spends 20 minutes researching the lab tests that the doctor has ordered and calls their reference lab more than twice to determine what vials and processing are required as they have never run these tests before

When you can not watch medical dramas on TV because you critique their many errors (on Bones, when Booth was in the hospital, his vital signs on the monitor never moved…ECG tracings continually move, numbers fluctuate…very annoying)

When you prefer to self administer any injections, and nurses have commented on your technique

When the first question you ask a new doctor is "what exactly is your experience with individuals with complex, complicated, and rare medical histories?" and they must pass your interview before making "the team"

When the cost of your prescription medications alone each year is more than the average income of most middle class families (and you thank God for providing insurance coverage in any form because without insurance you would not exist)

When you can spell words like pandysautonomia and lupus anticoagulant and antiphospholipid syndrome without hesitation, but you misspell words like perseverance and righteous

When you know how many different objects can be made out of an inflated medical glove, a sharpie, and some paperclips

When you have perfected your aim at shooting the caps off of syringes and using syringes as water guns

When your blood pressure drops to 78/40 and you actually debate whether or not to go to the emergency room

When you can sit and write a list like this in under 5 minutes, and it is actually amusing

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 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!