What happened to my head?
    a) The aliens returned and placed a probe inside
    b) The barber cur it a little too close on top
    c) I am a star in a local reenactment of a great battle in which the cripple always gets shot first
     d) I am having a 72 hour AEEG to try and catch my brain hiccups to figure out if they are seizures

When asked by an annoying woman in the elevator who just stared at me and asked "Oh My God What Happened to You?" I was tempted to go with A. Instead until noon on Thursday I am wired for sound. I wonder if I can tweak these things to get a decent radio station since we live in the last thing to pass as a city before God Forsaken nowheresville. We hit the event button twice, so hopefully we caught something already. Although it would be my luck to wear this darn thing for 3 long days and have a big episode as we are taking the electrodes off. I loved the instuctions that came with the hook up - don't shower while having 28 electrodes attached to you and a battery box recording them. Um, duh! If it itches (if? if? it started itching before she was done putting the leads on!) don't scratch. Right, cause in my sleep I can control that. That is why for sleeping purposes I get to add a snug knit winter hat over top of the ensemble. Do not stick anything sharp under the bandage to scratch your head. No chewing gum because it makes a nifty pattern on the EEG.
The one direction that has me a little perplexed is the fact that I am not supposed to use my cell phone except on speaker phone or text. Apparently the phones can interphere with the wires and electricity. Now I thought cell phones and their electromagnatism were deemed safe, yet I am being told not to put them near my head because they will scramble my brain's electric signals. I may rethink how often I use my cell phone!
The ditz who hooked me up yesterday had a philosophy that tighter was better for wrapping my head. I have deep red marks under my chin from where she put the chin straps. However, like a winter hat that is a size or two too small the bandage slowly crept upward trying to pop off my head. The suggestion from their office of sticking a nylon over it did not seem like a good idea as I have no bank robberies scheduled this week, so my poor mom had the job of carefully removing what was still on my head and then rewrapping the whole thing. Her chin straps are not gagging me so right there is a huge improvement. All the leads are covered and attached, and I have my trusty hat.
Thursday morning my mom has a DR appointment at the same office building where I need to go get fasting labwork done, so I may venture out in my new look to get labs done and then go out for breakfast. Breakfast is the easiest meal to find a vegetarian option in most restaurants. For fun I could decorate my head with stickers, because at this point dignity is a mute point. Thursday afternoon is dedicated to removing the leads (I have a solution to remove the adhesive that is holding them in place) and then washing my hair 3-4 times to get out all of the sticky conductive goop. Thank God I cut off the 11 inches when I did to donate!! I will be using the cheap shampoo to wash that many times and not my fancy organic expensive shampoo.
Until then I am wired for sound and my head is nice and warm!!

I grew up where you lined your boots up outside the classroom in elementary school and somehow never came home with the same pair. Elementary schools had sleds as playground equipment. I could playoutside for hours in the snow. The worst part of winter and playing outside was always the bundling process, especially when you had a grandparent or parent who thought that anything not covered by at least two layers would fall off. And it would never fail, the moment the last snap was done and the scarf tied you suddenly and inexplicably had to go to the bathroom even if you just went 5 minutes prior.
So I know cold and I know bundling. These skills have come in handy in what I have come to think of as Survivor Woman, Bedroom of Death. We live in an older apartment building that is heated by a boiler system, and my bedroom is as far away from the boiler as you can possibly get. The vents in the living room are closed and it is still warm while my bedroom could serve as cold storage. I half expect one morning to wake up to a few Penguins from the local zoo just hanging out. So each night the challenge is to dress in enough layers to make it through the night without waking up violently shivering and aching from the cold. Layer one usually consists of something like thermal pants, a long sleeve t shirt, and socks. Layer two is then fleece pajama bottoms and a sweatshirt. Gloves are kept next to the bedside and a hat has been known to make its way into the ensemble. By the time I am done I look like the kid brother from A Christmas Story "I Can't Put My Arms Down". I am also not ashamed of busting out the footie pajamas and even wearing a layer under those.
Hopefully my bundling days will soon come to an end as I finally broke down and ordered an electric blanket. I used to have an electric mattress pad which was wonderful but it was broken in one of my moves, and they are more expensive than the blankets. I just hate spending money on something I will only use for a few months out of the year. Then again, hypothermia sucks.

When I welcome some thing new into my life, it just does not feel right until it has been given a proper name. My computer is named Elphalba after the wicked witch of the west (and I named her correctly!!). My wheelchar is Nessarose, sister of Elphalba who had no arms (my chair has no arms) but could perfectly walk with enchanted slippers. My coffee maker is Klaus,a German in Lederhosen whose speciality is coffee instead of beer and he knows not to talk to me before I have had my coffee. My electric teakettle is Gretel, wife of Klaus the coffee maker, a round and happy Frau who occasionally just has to whistle with joy. My car had a name, like I had a car. Seeing as it is gone we won't bother going there. My ipod is named prism, for through it come music and stories of every color of the rainbow. I have three stuffed animals "Who", "What", and "I don't Know" in tribute to Abbot and Costello. Right now my printer goes by the name "useless pile of scrap metal". I have never named my TV, although my brother named his big screen TV Roxanne and the kids know that if they hurt Roxanne things get ugly - really ugly. So it makes sense that when something moves into my body and sets up shop that I name it too since it is now a part of the crazy thing called me. The spot on my right lung that we have no explanation for but that has never changed is named Bob because I spent a year trying to get someone to at least rescan and it felt like I was always asking "what about Bob"?  My digestive system is named Walter, and it is a very complicated story. But Walter farts can kill. So I have two unnamed additions to my body and that just will not do. One is the pituitary microadenoma that I was taking names for. The other is an assumed lipoma (the scans are unclear) on my left arm that has been there for years but is now growing. So first place in the name that tumor contest goes to Gollum, my hitchhiker in my brain. Second place goes to Peeves, given the honor of being the name of my long term friend in my arm. Prizes will be distributed.

I do not get out of the house as often as I would like for a variety of reasons - the weather (too hot/too cold, storming), the massive amount of energy required to get presentable and then wheel around some where (my arms are growing weaker damn it!), not feeling well, and the lack of a real purpose to go somewhere. Last week I was initiated into the true wheelchair user's club when I encountered yet another reason for not leaving the house. I was all prepared to go, had my shopping list programmed into my cell phone (what? I am more likely to lose a piece of paper than my cell phone! especially because I paid for the cell phone!), wrestled shoes on over my contorted feet (no botox this round so everything is tight as tight can be), and even managed to do something with my massive mess of hair (I am growing it out to donate and that is the only reason I have not taken scissors to it yet - it is much to thick and curly and snarly to grow long ever again). Then I sat down in my wheelchair and I was going nowhere fast. Okay, so I tend to go nowhere fast on a regular basis, but this time I had a reason. The left wheel was as flat as could be. It had been a long time since the air was checked and added to the tires and a few weeks since I had last gotten out of the house (I know, I am pathetic!). I think the bumping down the flights of stairs at the GI appointment encouraged some air to escape faster than my normal escapes from curbs and bumps. So I was stuck and like the awesome planner I am, I do not have an air pump/compressor. After some phone calls and cursing of Nessarose (the wheelchair), it was decided that the next day my brother would take my mom and the two wheels to the gas station to get air put in them. Thank God my wheels come on and off of the chair! I can only imagine what it looked like to see two people each holding just a fancy wheel walking out of the apartment complex or standing around the air compressor at the gas station. Someone probably thought that they forgot part of the bike when they stole it! The good news is that I am now back up to full pressures in both tires and it is holding steady (I check daily because I am paranoid). And for my birthday I am going to harass my dad for an air compressor. Cause nothing says loving like the gift of hot air!!

I learned something new and critical to life today. The moment I utter the words "Oh no thank you, I've got it." whatever object I am referring to will come to life and voraciously launch itself as far from my body as is possible. The items become projectiles in a show of willpower and supremacy of inanimate objects over my ability to contain them. I went shopping at the magical, amazing local bookstore today and had my usual stack of books on my lap. A kind person asked me if I needed help with my items and I repliec "Oh no thanks, I've got it but I appreciate the offer." A minute later those books were flying as if possessed by literary demons and scattered in a semicircle around me as if a small explosive device had detonated. Now blushing, I collected the books from the floor with much difficulty and much shame. After purchasing my newest treasures (I had a gift card left over from Christmas- bonus!) I decided to visit the Starbucks at the store because it is the closest thing to a real coffee shop I can get to in this town. As the cashier handed me a tray with my Italian Soda and Banana nut muffin on it she asked if I wanted her to carry it to the table for me. I once again replied "Oh no thanks, I can get it but thank you for offering. Three rolls later and everything goes sliding forward at terminal velocity. Somehow by slimming my knees up as high as possible considering my feet are strapped down, jerking the chair backwards, and grabbing for my drink I manage the world's most ungraceful save and only encounter minor whiplash. I saved the Starbucks, which is the most important thing because a spilled Starbucks is worth crying over! So it seems that people asking me if they can help triggers some switch in the universe that causes my objects to scatter with great speed. So now I know if someone asks me if I need help and I say I am fine I should immediately secure all items in their full and upright positions and prepare for turbulance. :)

I was notified via a little handwritten note attached to a form I requested from my former school district (Dante's Inferno level 14) that my COBRA health coverage runs out as of March 31. Nothing like a little warning here. The really annoying part is that without health insurance, especially prescription insurance, I pretty much become a contest to see which major body system fails first. For a while there I felt overwhelmed, as my options are pretty limited and the time is short. This would not be an issue if Social Security had not been such bastards and had just approved my claim and not forced an appeal because then I would have Medicare. Two options have already been eliminated. I can convert my COBRA insurance plan to an individual health care plan, but insurance is apparently for the healthy. Once I met the $2500 deductible, I would pay up to $100 per prescription until the insurance company had paind $2500 and then it would be all on me. Two of my prescriptions added together would take out the $2500. It allows a gracious 2 physicial visits per year. Something tells me Botox and wheelchairs and leg braces are not covered. I then checked to see if I could be added on to my father's insurance plan as a disabled dependent, but he is now on Medicare and so that is a no go. I am down to throwing myself at the mercy of the state and praying that there is an answer. I have faith that God will provide an answer, as He has never failed me before and He is not going to change His ways now. Even though it feels like I am in the middle of a quagmire, barely able to lift a foot without losing my boot to the muck, I know He is creating a way. Prayers are always appreciated.



Zombies are real, and I had the bizarre chance to meet one this week while having my blood drawn. Apparently they are drawn to Vampires. I was having my blood drawn, half listening to the conversation in the curtained area next to me because they were talking as if they were on a Broadway stage without microphones. Suddenly I hear the man make a proclamation that startled me.
"And I have rigor mortis!"
Now being the daughter of a large city homicide detective, I am relatively familiar with rigor mortis. Being a word nerd, I am relatively familiar with the root word of mortis. If he has rigor mortis then he definitely wins the prize for having the worst day ever. Considering he was breathing and talking, and I later saw him shuffling down the hallway, I can say with some certainty that he is not fully dead. This leaves one of two choices. He is out of his mind insane or a zombie. He never called out for brains, but given the cumulative IQ of the staff it would have been a meager snack for him and my brain is so scrambled it probably would cause an ulcer. I am guessing the guy is a little stiff in new situations and sticks out a bit at parties. I wonder if I get a diagnosis of rigor mortis of Social Security would approve me then? :)

I am totally stuck with "nothing worth writing about" block, but I want to put something up here. Thus you will be subject to the random sparks of my mind as it tries to kindle a fire to keep itself warm because it is once again below zero outside. Now I get that I live way above that Mason-Dixon line, but does Mother Nature need to keep rubbing my face in it and giving me a white wash? If we could get the windchill into a positive two digit number I would be her new bestest friend. I lost one of my wheelchair gloves in the vast black hole that is Walmart, which means I now have one pair so when my hands get soaking freezing cold and wet from the slush that no one gives a darn about doing anything with anymore I have no other gloves to change in to. I suppose I should shake the money tree extra hard and buy replacement gloves, but dang it - who would find and keep a single fingerless glove? And its not like it was brand new, it had been put through its paces for a while and was nicely broken in.
I finished the experimental dosage of massive antibiotics to see if we could eliminate an infectious cause for my daily fevers and so far, so good. I did manage to acquire a sinus infection while on a broad spectrum antibiotic, which amazes me but shouldn't as my immune system really does suck like that. And this time of year is like playing craps every time I go out because I am allergic to the flu shot and I rely on public transportation - oh what a bad combination that is, being unable to get the vaccine and then immersing myself in a mobile petri dish of horrors.
Speaking of the joys of the mobile petri dish, I had a woman who was using a motorized scooter sitting next to me on the bus and she felt some strange compulsion to tell me her life story. She also kept patting my arm. Then she looked at me expectantly like I was going to reveal the deep dark secret of how I became disabled and how hard life is for me. I just looked at her, smirked, told her "Yeah, I caught a bad case of dystonia" and pulled out my cell phone to play WordTwist. She visibly sagged in disappointment over the fact that I was not giving her at least an equally juicy story full of horrors and "poor me"s. Sorry lady, I had just done battle through Walmart, sans gloves, and I was in no mood to have a Hallmark moment, or a Mallox moment.
I think maybe this weekend I will finally take down the small Christmas tree that is still sitting on the craft table in my bedroom and put it away. After being hesitant to do much for the holidays this year, I am now too lazy to take all of the ornaments off of the little sucker and pack it up. It is oh so tempting to just cut out some hearts, stick them on, and make it a Valentine's Day tree, then repeat with Shamrocks for St. Patrick's Day, Eggs and flowers for Easter, etc. But eventually I do want my craft table back. It is also very tempting to just shove the entire thing in a box, ornaments and all, but I know that next December I would be very angry with myself for that little stunt. Sad thing is, I am not really ashamed of still having the Christmas tree up, as much as almost proud in a twisted sort of manner. :)
I will hopefully be back soon with more insightful, thoughtful or at least funny insights. Like the fact that the punk who decided he was done with his slice of pizza at Walmart and chucked it over the shelves from his aisle into mine where it landed dangerously close to me is lucky he can run faster than I can wheel or I would still be picking his DNA out of my tires. Or the fact that the people most likely to help you when you are in a wheelchair and can't reach something or drop something or get stuck in, say, 14 inches of snow are women of childbearing age. It brings out the mothering instinct. Men rarely help unless they have a woman with them that they want to appear especially chivalrous for, or I flat out ask them and they get a neat deer in the headlights look. Sometimes I like cornering a guy just to see that look when I ask for help. Its like I am asking for help getting dressed instead of reaching the milk.

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!

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.  

Courtesy of Dysautonomia and the working diagnosis of Mitochondrial Disease, I have no functioning sleep wake cycle. Circadian rhythm is a joke. My poor brain is very discombobulated and without chemical assistance is never able to fully awaken and is never able to fully fall asleep. It is like an endless night of the living dead. I take my "lets convince the brain to wake up medicine" as soon as I get up in the morning, but there is about a one hour lag between when I take them and when they convince my brain to wake up. That one hour has led to some great family stories of the hysterical things I have reportedly said and done, and more than a few unexplained bruises. This morning was a great example of my brain NOT on drugs.
I made myself a cup of coffee, which I can do in my sleep thanks to a coffee maker upgrade back last fall. You pour boiling water across your lap once because of a combination of not being awake and poor arm strength and you quickly problem solve. I love Klaus my Keurig coffee maker. So I took my heat resistant, silicone lidded cup of coffee with me into the bathroom where I get dressed (I know, some may say eww but I was not using the toilet or flushing it so hush). I set my coffee down in the bathroom and then went to gather up my clothes. I then tossed my clothes into the bathroom (my wheelchair does not fit - by a freaking inch- so I transfer to a walker) and went to turn the light on. I stared at the two switches. I tried one, but that only made the room darker so that was no good. I put that back where I found it. I tried the other one, but that just made an annoyingly loud noise, so I put that back where I found it. OK, come on I know one of these had to be the light switch! TWO minutes later I realized the lights were already on!! Nice. As I was getting dressed I discovered that when I got dressed yesterday morning after my bath I had not only put my underwear on backwards but inside out - and had not noticed it for 24 hours. Bonus. I managed to get dressed with everything in the correct position, sipping coffee along the way. Teeth brushed, hair pulled back into sloppy ponytail, I finally looked in the mirror. I decided I needed to apply Cetaphil. I took the lid off of the jar and stuck my finger inside only to discover I had just stuck my finger in my coffee. Coffee as a facial was not going to do it for me. I tried that again with the correct lotion which worked so much better. Then I came out into the living room to put on my AFOs and shoes. Putting my AFOs on is a wrestling match (if you want to know why look at the post two entries ago with photos of the spasticity and dystonia in my feet), so at first it did not occur to me that I was having an unusually hard time getting my brace on. Five minutes later it occurred to me that it was the wrong brace. Odd thing is that the curve of the wrong brace was a more comfortable fit to my foot in many ways - it let me keep them curled.
This is why I have a rule with anyone who might come in contact with me during that hour lag period that nothing I say or do can be used against me. I am not to be held accountable to anything you might convince me to agree to doing and anything I say that makes no sense can not be used to humiliate me. The same thing applies to the lag period between when I take my "convince the brain to go to sleep medicine" and actually fall asleep!!

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 usually do my own grocery shopping with minimal to no assistance. I may be creative and adaptive, but I have yet to find a way to push a shopping cart while using my wheelchair. I refuse to use the power carts because I really don't need to add battery power to my erratic driving as an announcement would follow me throughout the store "Clean up on aisle 9....Clean up on aisle 8...Clean up on aisle 7". I also have no desire to trade my $4000 wheelchair for a wheelchair with an attached lap basket and trust that nothing will happen to my chair as it sits basically unattended at the front of the store. That is not a fair trade. So what I usually do is use two or three reusable shopping bags hanging on the back of my wheelchair, and as I shop I place the items into these bags. With proper packing, I can easily get a week's worth of groceries this way. I rock at packing reusable shopping bags, I just need to learn to be aware of the added weight on the back of my wheelchair. Thank God for wheelie bars!! And I swear there is a conspiracy to place whatever items I need on the top shelf so that I either have to play damsel in distress and ask for help (ugh!) or unbuckle my feet, undo my seatbelt, and hold on to the shelf to do the amazing standing gimp trick. That one really freaks people out because they assume that since I am in a wheelchair, especially one with more complex foot restraints, that I can not stand, so when I suddenly pull myself into a standing position to reach something they totally freak out. Sometimes I choose that one just for the effect. ;)
Well, on Monday I had the opportunity to go grocery shopping with an accomplice. Because we were going to receive a decent amount of snow (about 8-10", not that impressive by Michigan standards but enough to limit a wheelchair's accessibility until everything is plowed, salted, and plowed again), my Dad took me grocery shopping so I could get anything I might need for the next few days. His job was to push the shopping cart behind me, and my job was to toss items into the cart over my shoulder. This worked well until he became distracted, and not having eyes in the back of my head (as much as my students would beg to differ) I picked up a package and tossed it over my shoulder. Instead of hearing it land in the shopping cart, I heard it land on the floor. The woman scanning the shelves next to me turned and stared at me as if I had lost my mind, having just taken a package of food and thrown it over my shoulder for no apparent reason. I just laughed as she backed away rapidly. When my distracted father caught back up to me, I told him that he had missed something, and asked him if he could please pick it up off the floor for me. :)
When we went to check out there were a lot of other people doing the winter storm stock up, and there was one cashier working. Great planning. So I went to wait in line. The older woman ahead of me turned and waved me ahead of her. I tried to tell her I was fine waiting, but she insisted and well, her cart was filled while mine was not so I figured if she wanted to do something selfless but silly who was I to stop her? Inside I was thinking "sucker!" because I am anything but pitiful or helpless. Then the guy ahead of her did the same thing. I seriously tried to protest, but to no avail, so I went from 4th in line to 2nd. I mean, I have a seat while I am waiting, its not like I have to stand in line people!
Then the fun part - the putting away of the groceries in a kitchen roughly the size of a handicapped bathroom stall. There is no room to turn my wheelchair around in the kitchen - it is pull in, back out. I have to wheel out to change my mind. Storage is limited in my kitchen...heck space is limited in my kitchen, so I have to be creative with my storage options especially adding reasonable accessibility into the mix. By the time all of that was done, I was ready for one of the special treat ice cream cones I had bought - I think it was well earned!

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!

This past weekend was the family Christmas activities for my father's family. A tradition of sorts has been established that each year the families gather at a hotel that has a swimming pool (easy entertainment for the kids grown and not) for the weekend. We have a big family meal on one day and then a smaller get together the other day for presents and such. This year the chosen hotel was just one town away from where I live, so the original plan was for me to spend the day with everyone and come back home at night. However, my stepsister's husband had to work and so she invited me to join her and her kids in their hotel room. It was a wonderful weekend where my braces and wheelchair and crutches were insignificant, where no one treated me any different and where I could just be a part of a family celebration. It was just assumed that I would be included rather than looking at obstacles and thinking it would be too much work. I have not always been close to my stepsister and brother, or to my stepmom, especially when I was growing up but they have genuinely formed a family that cares about me and accepts me and is protective of me without limiting me and that just gets that in spite of all the medical stuff I am still Bethany. I thoroughly enjoyed being able to swim so much, as in water I can move my muscles so much easier than I can in any other situation. I do cheat and use a flotation belt because I struggle to maintain balance and to hold my legs up when swimming, but the difference in motion is amazing. In the pool I could participate in all of the fooling around and playing without struggling with my wheelchair. I was able to play with my nieces in an environment that was without barriers. On Saturday evening, the spa was cooler than usual so I was able to safely sit in the warm water and place my feet in front of one of the jets for what was an incredible "massage" that helped to loosen up my muscles.
Two funny stories. The first involves being completely and inappropriately dressed for an occasion. At the hotel, the swimming pool was directly next to a large conference room (actually it connected through sliding glass doors and could be opened up so the pool and room were connected). As we were swimming Saturday morning, complete with children splashing and jumping into the pool and shouting and being kids (and some adult males being kids with them), we discovered that a funeral memorial service was being held in that room directly next door. Now, not only was it bad planning to place a somber event next to the pool the weekend before Christmas but the only way from the pool back to our room was either to go up a flight of stairs and across the upper floor then down a flight of stairs (um, apparently the wheelchair was not a clue to the hotel staff that this plan was not a reasonable option) or to go right through the buffet area for the funeral. So not only did we have to parade soaking wet, in flipflops or little bare feet through the somber set up but my swimsuit cover up? A nice wrap with brightly colored skulls and cross bones all over it. I have now officially crashed a funeral in my swimsuit and a skull and cross bone cover-up.
Second story requires some background knowledge. Last week my stepsister graduated from nursing school. Awesome! My dad and stepmom obviously went out to her graduation. I forgot what day her graduation was and so when I had a toilet emergency on that day I called them to see if they happened to have a plunger I could borrow. As soon as I called, I realized where they were and that from 3 hours away they were not going to be able to help me out. They actually did help me through a call to a friend who lives in the same apartment complex who hunted down a plunger for me, and all it cost me was some embarrassment. So yesterday while we were opening presents my dad and stepmom announced that they had a very special present for me. With a large red and green bow on top and red ribbon curling around it I was presented with a plunger complete with a tag reading "In Case of Emergency". I had to laugh, and everyone who knew the saga laughed along with me. So now when I am asked what I got for Christmas I can proudly say "a plunger!". :)
Tomorrow I am going over to my Mom's to spend Christmas with her and then on Saturday we are going to my Aunt's house for Christmas with my Mom's family. I am more nervous about that event because no one from her family has seen me or interacted with me in person since I became sick with whatever this dystonia/progressive spastic paraparesis/unknown syndrome is. I just want people to treat me like me and not be uncomfortable or all weird because of the chair and the changes in my life. But I am so excited to be celebrating Christmas with far greater health than last year, and not desperately ill and an 11 day inpatient stay right up until late on December 23. And I can even eat all of the Holiday foods this year too!! What a difference a year makes!! I am so blessed!

I would like to remind people that they do have the right to remain silent and that in many circumstances I would love for them to please use this right. Today I was waiting at the end of a typically long holiday line when a woman (I will NOT call her a lady) and her boyfriend/mate got in line behind me. She appraised me and my wheels and I knew I was in trouble. Inside I pleaded with her to use her right to remain silent and not open her mouth, but of course she had to let the ignorance talk.
"A wheelchair, that is a great idea! I need to get one of those! Standing in these long lines just makes my legs so tired." Allow me to state she was in her 30s or 40s with no apparent health issues as she left her mate in line and literally ran out to her car and back later on.
I spun to face her full on and very coldly and evenly replied "I'll gladly change places with you."
About 5 people around us started laughing as I spun myself back around facing forward in a "kiss my axel" movement. I think they were laughing for two distnict reasins: 1) relief that I had handled the situation without a need for security or police involvement and 2) the sheer ignorance of her comment being succinctly put in place.
Really, even as the exchange was going on a part of my mind was in complete shock at the level of ignorance and lack of tact she was giving voice to and the fact that it never occurred to her that perhaps the wheelchair was more than just a portable seat.
The saddest thing is I don't think the encounter even made it into her awareness, and I have no doubt that she will without hesitation make an equally ignorant and inappropriate comment in a similar circumstance given the opportunity. You can not force someone to become educated, only provide them with the opportunity for enlightenment. that said, you can also wish for them to keep their ignorance to themselves!!

I was thinking, which tends to lead me to no good, and I realized that there are some benefits to relying upon a wheelchair for mobility. Hence the creation of the list below. I am sure it will grow with time.

* You can never be accused of looking down on someone.
*You never have to worry about finding a seat.
*There are no speed limits for wheelchairs.
* Wheelchairs are eco-friendly so you are reducing your carbon "footprint" to a carbon treadmark.
* You can totally skip the long lines at airport security.
* If you so desire, you can pick a fight with just about anyone safely because no one with self respect is going to take a shot at a gimp.
* People are so impressed that you can maneuver your wheelchair that should you actually say something even halfway intelligent it renders them astonished and amazed.
* A pair of shoes never gets "worn out" seeing as they serve a primarily decorative function.
* Chivalry is revived as people rush to hold doors open for you.
* Wheelchair skiing reduces the height of the fall and what's the worst that could happen - you end up in a wheelchair?
* Two words: Wheelchair Arms.
* You are at the perfect height to check out hind ends that happen to end up in your face.
* Life is an extreme sport, and racing downhill on an open road is like street luge.

It was a cold and foggy morning, just before the sun would begin to ascend in the sky and start to slowly burn away the misty vapor that encompassed everything in a murky haze. While neighbors slept soundly in their warm beds, completely unaware of what was lurking in the dark fog, creeping ever nearer to my home. By the unholy hour of seven o'clock in the morning, before the sun's rays had struck over the horizon and as the darkness continued to cling to the cold blanket of foggy mist a rattling tapping was heard on my metal screen door. I knew it had come for me. Through the darkness, the fog, and the unholy hour it came and my defenses were not strong enough to even attempt a counter attack. With a groan and a deep breath, I flung open the heavy metal interior door to reveal one perky vampire dressed in Old Navy Fleece standing outside my door. Vampires should never be perky, let alone at seven o'clock in the morning but apparently she had not read the Vampire Handbook. This might explain why she was eagerly working as dawn approached instead of in the full coverage of the darkness of night - she had not yet read the fine print of her alternative lifestyle. I invited her in, since everyone knows a vampire can not enter a dwelling without an invitation from a living human being who does not seek blood for a living. Her hands were as cold as ice as she decided which vein in my arm would provide the best access for the snack sized tubes of blood that she needed to collect to ship off to the central laboratory for investigation into my human genetic structure. I think perhaps one small tube is saved and allowed to age like fine wine for taste testings much as we perform wine testings. As she slid the gardenhone, um needle, into my arm I think I caught a flash of fang glimmering in her grin as she watched my blood quickly fill up the tubes. Ruthless vampires. With a square of gauze and a bandaid, guaranteed to cause a rash as I am as allergic to medical adhesives as vampires are to garlic, she was finished. So now my blood will be intrusted to the vampire couriers of FedEx and I can go back to sleep for a while since it is still dark outside! The results of the genetic testing on the blood collected will more than likely take a while, as the nerds try to separate out the specificly identified genetic markers to see if I possess any of them, and I am just thankful that the sphincters at the insurance company have agreed that these highly expensive tests are indeed covered and medically necessary. Vampires and nerds and Sphincters, Oh My!