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 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.

*********************************************
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?

*******************************************
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.

********************************************

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."

*******************************************

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.

*******************************************

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."

********************************************

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 has been a while since I have posted anything. Most people hibernate in the winter, and living in the great frigid north I am not opposed to that tradition in any way. However, thanks to the failure of my body to regulate temperature, I also have to hibernate inside with the blessing of air conditioning on summer days that are too hot. This summer has been unusually hot and humid, meaning that my ability to get out and do anything has been greatly limited. Add in the total lack of access to transportation unless someone decides to take me somewhere and I am a house hermit. But not for long. So long as everything works out as it should, in just over a month I will be moving in with my mom to a two bedroom handicap accessible apartment that is in the bigger town with a fully accessible public transportation system that allows me to be independent and go wherever I want whenever I want. I will also be able to get my wheelchair into the bathroom (bonus!), and turn around in the bedroom (double bonus!!). It may seem like I am losing independence by moving back in with my mom, but I am gaining so much more independence by having access to freedom. I can go to coffee shops to read and hang out, to the store when I want to, to the YMCA to go swimming in their handicap accessible pool, and so much more. I can reach counters in the kitchen and prepare food. I can get in and out without struggling with a less than safe ramp. So prayers that this goes through without any difficulties would be greatly appreciated!!
In other news, I spent Wednesday hanging out with my favorite almost 6 year old, my niece Little Bit. I certainly will not be able to call her that for much longer as she is growing like a weed fed Miracle Gro! I am absolutely in love with her openness to the world and the fact that she is neither embarrassed nor afraid of my health changes. When she has a question, she asks it without hesitation. "Why do you wear gloves to push your wheelchair?" "Why are your legs like that when you walk?" "Does it hurt?" She climbed all over my wheelchair to explore it (again, she is fascinated with it) and even gave one of the family cats (who deserves kitty sainthood) a short ride. She helped push me up a steep ramp so I could watch her swim lessons and then ran with me as I coasted down the steep ramp afterward and laughed at how much fun it was to go so fast. She is so matter of fact and accepting and I love her view of life and the world. My Little Bit is growing up and recently lost two of her baby teeth. My brother, the tough paramedic, can not handle loose teeth and was totally freaked out by the process but Bit is very proud. She is very fair when it comes to gender, stating that the tooth fairy can be a boy or a girl, and she has no clue what he or she does with all those teeth. Apparently age 12 is when you officially become too cool for family, because my other niece and my nephew are both now too cool to spend time with family although I give my soon to be 14 yr old nephew a lot of credit. He had a friend over and very nicely introduced him to me, and then a few minutes later came out to the living room and asked if I wanted anything to eat or drink. Without any prompting from an adult! He really is a great kid/young man.
My Botox injections were postponed from Wednesday to two weeks from Wednesday due to some meeting that came up at the last minute that the doctor had to attend. I just want to get them over with (I am tired of considering just how much this might hurt) and see if I get any benefits from them. I am benefiting from the most recent changes in medication, although it needs to be adjusted somewhat again.
In stomach news, I am still stuck at pureed "stage 3" baby food level. I was so excited to find out I was able to eat a package of mini muffins without smooshing them with milk because they were so super soft, only to discover through a horrendous stomach ache and other GI issues that they were saturated with oil and I can not process that right now. I also had a horrid reaction to broccoli baby food mixed with mashed potatoes. I am getting somewhat used to the stomach pain, and have down the exact combination of meds to take when it hurts versus when I am severely nauseous versus when it both hurts and I am severely nauseous. Too bad my insurance company rations my Zofran (antinausea medicine) to 48 pills per month, even though I receive a generic. I am allergic to Phenergan, and Compazine proved useless the first go round with this so I am rather stuck. I also use Reglan up to 4 times per day. I need to see if my GI doctor has any ideas of other combos or meds we can try or add for nausea that my insurance might cover. I hate having to choose to feel sick many times because I need to save the meds for when I feel really, really sick.
Other than that, nothing much is happening. I will definitely try to update more often although I think there are maybe 2 people who even read this. Oh well, I write for myself as much as for anyone else although it would be nice to someday help someone else in my situation or a similar one out. I have been awake 4 whole hours which means it must be nap time! :)

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!

Frustration has become a frequent visitor as I am constantly reminded of how different my life is from those of my "peers", and as I continually discover obstacles big and small where they never existed before. Most of the time I am pretty good at using my skills honed as a teacher to problem solve and either create alternatives or adaptations. Some things I have yet to figure out and are just annoying, like the fact that at least once a week I manage to forcefully jam a thumb between a rapidly moving wheelchair tire and the immovable brake gear. This happens because for some odd reason I can not figure out, when I am not thinking about it I push my wheelchair by the wheels more than by the push rims. I partially blame the "genius" who never asked me what kind of push rims I wanted and instead made an executive decision for chrome. Because shiny metal is so easy to grab, does not possibly rip skin from your hands and cause frostbite when it gets wet in the cold Michigan winter, and could not ever become burning, scorching hot in the summer. My patience for the stupid that seems to bloom in people when they see someone in a wheelchair has been worn very thin, and I am not yet at the point where I feel like being an educator and advocate about disabilities. Children do not bother me - they are curious, I love when they ask questions, I love watching them process it all. Adults who assume that because my legs do not work according to standard operating instructions that my brain must also operate on a different frequency frustrate me. People who assume that I have become hearing impaired because I am sitting down make me laugh, but annoy me. Anyone who asks me where my parents are or who is with me or if someone forgot me triggers the redheaded anger, which is not recommended. I am tired of the world defining me by my body when I am not my body. My body is a tool that I use that allows ME - my thoughts, my ideas, my emotions, my personality, my existence- to navigate through life. I am so much bigger than my body.

Bigger Than My Body - John Mayer
This is a call to the color-blind
This is an IOU
I'm stranded behind a horizon line
Tied up in something true

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for

Why is it not my time?
What is there more to learn?
Shed this skin I've been tripping in
Never to quite return

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for
Cause I'm bigger than my body now

Maybe I'll tangle in the power lines
And it might be over in a second's time
But I'll gladly go down in a flame
If the flame's what it takes to remember my name

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body
I'm bigger than my body
I'm bigger than my body now

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

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.

Life isn't fair. It's just fairer than death, that's all.

William Goldman, "The Princess Bride"

We are a generation of entitlement, a generation that believes that just because we exist we are automatically entitled to a life that meets some arbitrary definition of "fairness" and "justice". Last time I checked, my birth certificate did not come with any warranty or life time guarantee. There were no promises made, no refunds or exchanges offered, and no manufacturers warranty covering any part of the product.  This is life, not a lifetime movie in which everything works out hapily ever after once you use the required number of kleenex for those appropriately emotional moments, moments that are acceptable because you know the end will always be positive. Reality is not a movie of the week. You take what you are given and you have two choices. You can demand that you receive something else, that you exchange or get a refund of sorts and complain bitterly about the injustices of having not received all that you feel entitled to or you can suck it up and deal, living life as it happens and appreciating the fact that in all honesty we are entitled to nothing. The world owes us nothing but we tend to demand an awful lot from it, thinking we are somehow special and set apart. I am frequently told that somehow the way that I live my life is courageous and brave or that I am doing something extraordinary in how I am dealing with all that has happened in my life. I don't see it that way. I never signed up for this, I just happened to receive this body with all of its genetic misspellings and malfunctions. I can waste my life yelling that it is unfair, but that will change nothing. It will not undo what does not work right in my body and it will not guarantee me more time to experience being alive; it will rob me of precious time to treasure life and to make the most out of every single moment. I refuse to allow the things that went wrong to define me or to limit me or to prevent me from living my life. I only have this life and there are no guarantees or refunds or warrantees or exchanges and I do not feel that I am somehow so special that I am entitled to a life set apart from the realities of the world. Sure, it absolutely sucks at times and I get frustrated and overwhelmed and angry. Then I have a good cry if necessary and suck it up and deal because I am still so blessed. This is my life, and I can do nothing other than live it the best way I know how. I don't see that as anything special or brave or courageous. It is just ordinary me living the life I have been given and refusing to let a moment be wasted on false senses of entitlement or pity when they could be spent in joy and celebration and hope and wonder. I can dance and laugh and sing in the rain just as easily as I can in the bright sunshine, and puddle stomping is grand fun.

So this evening I had the brilliant idea that since my new AFOs provide better stability when I stand, I should try and see if I could take any steps without assistance. No, I do not know why I temporarily forgot the fact that the last time I attempted this stunt I face planted with astonishing speed and force or the fact that I have a hard enough time maneuvering with my crutches. It seemed like a brilliant revelation and a great way to prove that this disease is not progressive, that I am getting stronger. There might have been a little stubborn pride and will tangled up in my brilliance, a touch of denial, and some strong desire to take back control. So step one was standing without assistance, which is dangerous in and of itself because with my trunk muscles weakened I have a difficult time maintaining balance. In physical therapy, the therapist was literally able to knock me over with two fingers pushing my chest, back, or side. I am a living Weeble Wobble only I do fall down. That right there should have illuminated the predictable outcome of my brilliant idea, but I was so caught up in my revelation that common sense became uncommon. I managed to stand with my feet spread out in a wide stance (nothing dainty or feminine here, I had work to do). Then step two - moving forward. Hmm. This is the part that is really tricky, because with my crutches I use my upper body to puch upward and then just kind of drag, thrust my lower body along for the ride. I twisted at the waist but nothing happened other than a near fall. Okay, so my legs feel like they somehow weight about 500lbs yet are as sturdy as tiny twigs and I seem to have no motor plan for moving them forward without holding on to something. That should have been a red flag, but I was still being stubborn. A few more twists and I looked like a robot set to self destruct dancing. I finally somehow managed to clear the ground by about 0.001 millimeters with the bottom of my right foot while twisting and my foot ended up maybe half a step forward as my arms spun wildly in the air. With all of the wild arm spinning and hip twisting and flailing, my left fot cleared the ground by the same 0.001 milimeters and ended up maybe a half step forward. Yea, woo hoo, two steps. Except I was not done flailing and fighting for balance, and the fight was not in my favor. As I plunged to my knees and broke a further forward fall with my arms my pride also took a spill. The hardwood floor was not the most ideal of landing surfaces, and both my knees and pride are going to be banged up. After sitting on the floor for a minute having a good old fashioned pity party, I creeped my way over to my wheelchair (just those two half "steps" and the forward fall behind me) and hauled my dejected self back into it. Sometimes my body feels better in terms of the muscle spasms, and the dysphagia, and the constant nausea, and the horrid weakness, and the fatigue, and everything else and I think maybe, just maybe I am "getting better", maybe I will walk independently again or even with assistance as a functional skills, maybe this will all go away. And then I test my limits, and hopefully all that I bruise is my ego and my pride when the truth knocks me down. So tonight I have an ice pack on my pride and a few new bruises on my knees. Both will heal with time.

In this crazy world I am caught up in of doctors and testing, of rare diseases and unanswered questions, of radical and rapid life changes, of the unknown and unknowable it is often the little things that catch me with my defenses down and pierce my heart. I am battle weary but armed and prepared for the daily foes of magnitude, I am not prepared for the simple things that slip past my guard and bring me to my knees. The past few days have brought several little things that evaded my armor and struck at my heart and soul in ways I was not prepared for and never imagined. When I reached into a box and pulled out my hiking boots, with small rocks and packed dirt still wedged into the tread, my defenses were unprepared. Almost exactly a year ago I was delighting in the fact that my body was doing things I had never dreamed possible, that I could find such freedom in movement and explore the world around me away from the overcrowded community on the fringe of the city. I was pushing boundaries, taking time to see my surroundings in an entirely new way, appreciating my freedom, bathing in the peace I found in the middle of God's creation. I spent every weekend that I could in the local state and national parks, and I felt most at peace and most free during those times. As my fingers traced the heavy treads on the bottom of the boots tears poured down my cheeks. I am still mourning for what I lost, and the grief came flooding in waves like a tsunami. I was angry, I was bitter, but most of all I was anguished. It was about so much more than the boots that I clutched like a life line. In the same way that it was about more than the year long access card to the national park that I used just once, last September, before becoming sick or the T-shirt from the summer of 2008 when I was able to not just teach amazing kids at The Pittsburgh Project but do things like go up and down the 40 stairs to my room without hesitation or the valentine from one of my preschool students. It was about the very raw and very vivid grief that lurks just below the surface, a tangle of emotions that I am sorting out but if I tug on the wrong one everything comes tumbling down into a heap, a grief that wears many masks. Sometimes it wears the face of sadness and dispair, other times it wears the face of bitterness or anger, and still other times it wears the face of detachment and withdrawl. Yet it is always the same truth beneath the disguises, and it is a process of letting go and accepting that is so difficult. There are good days and bad days, good minutes and bad minutes. In so many very real ways, my life that I knew has died and I am mourning for that death. Yet I am also so thankful for all that I do have, and I continue to fight and face the battles that rage within and over my body. Just when I think I may be getting closer to really accepting all of this and moving on, a little thing sneaks beneath my defensees and the emotional wounds open wide again. I know it will take time and faith and God and grace and mercy and hope and faith and time, and that for once in my life I am absolutely perfectly normal in regards to something. Sometimes, as I stand guard against the dragons and the giants, the monsters and the boa constrictors, I wish there were not quite so many little things.

For days or even a week at a time I feel like I have everything under control, or as under control as possible when your body laughs at you when you ask it politely to do something like maintain a core temperature near 98.6 or straighten its toes. Then something happens - something physical, something emotional, something in terms of new worries or diagnoses or symptoms or slaps of realities or crashes from the Dysautonomia and suddenly I realize that I have as much control as Pavlov's dogs. Of course, it does not help that I am perhaps the most stubborn person I have ever encountered and so I may have a small tendency to completely ignore the warning signs that my body gives me that I am pushing it too hard and just keep going because I refuse to allow my body to define who I am or what I do. There is only one problem with that attitude, and that is that in the end my body usually wins with a big meltdown and reminder that I can push but it makes me pay. Then there are the emotions that I try desperately to ignore and just push past. Don't I look good in my self made superhero cape (just ignore the fact that every so often I manage to choke myself with it and don't look to closely or you might see that it is made from patchwork, duct tape, and and illusion)? I don't want to allow this illness to have power over me, so I try to avoid the emotional impact that it has because that is admitting it has the ability to control me in ways I hate losing control. I do not particularly wish to grieve for an entire way of living, for a person that I can never be again, for hopes and dreams that I have to exchange for new hopes and dreams. So I try to dodge those feelings until suddenly I find myself in the midst of more emotions than there are words to describe them. I should buy stock in Kleenex for when this happens. It can be triggered by so many things - a seemingly random small frustration that is just the last thing I can handle, an object that reminds me of a year ago, a date of "the last time I...", a word, a bad day, or apparently the flap of a butterfly's wings in Brazil. The Dysautonomia crashes just frustrate me because I want to be doing things, living as close to a normal life as I can get, and yet my body refuses to cooperate and on those days it is a victory if I migrate from bed to couch where I spend the day curled up and struggling to stay hydrated. On those days the idea of wheeling anywhere seems as impossible as the idea of walking across America. Then there are other stresses like sitting in an apartment full of boxes from my previous life in Virginia, seeing my car parked outside my window packed full of more boxes (a car I can not drive but am still paying for, a car that right now is a daily reminder of my losses and that had to be parked right outside my window because that wouldn't possibly touch a raw nerve or anything), and feeling overwhelmed. Thankfully, I was smart enough to realize I could not do this on my own - the physical act of unpacking when my muscles are in such a rebellion and I am hanging on the edge of a huge Dysautonomia crash, and the emotional act of having to go through the remains of a life I still so desperately miss and crave to regain. So today my Mom is coming to stay with me for a few days to help me get organized, to sort through the boxes and the emotions, and to be the voice that reminds me this is all normal for a very abnormal situation. And all that I can do is my best, and not give in to the frustrations or anger or weariness or grief. All I can do is just keep swimming. I am so blessed to have so many people that I can reach out to when I need someone to listen, someone to understand, someone to pray, someone to be there, someone to physically help me, and someone to remind me that I am not a failure for feeling all of these things but in fact for once in my life absolutely and beautifully normal. So for this week my goal is to just keep swimming and to soak up the love of my friends and family.

I figured it was time to update on some of the best random acts of ignorance that I have encountered recently in my life on wheels. I seem to bring out the very best in people.

* I went with my stepmother to obtain certified copies of my birth certificate that are required for filing social security paperwork and other paperwork. The counters at the courthouse were incredibly high, so I could not see over them. There was one accessible counter, but it was being used by perfectly healthy and mobile individuals. So When our turn came, we were called to one of the incredibly high counters. As usual, the court paperworker immediately talks to my step mom because apparently there is an unwritten rule that if someone is in a wheelchair they have lost the ability to speak. My step mom explains that we are there to get copies of "my step daughters birth certificate" and the paperworker immediately looks out over the counter and replies "Oh, she must be really little!" Um, not so much. "I'm not little, I am just sitting in this really new invention called a wheelchair". I was met by prolonged silence and then an "oh". This enlightenment did not stop her from talking to me like I was five years old, much to the amusement of the woman at the accessible counter for other paperwork directly across from me who was trying so hard not to laugh at her coworker.

* A woman where my mom lives is convinced that now that I have "braces" (the ankle foot orthotics) for my legs I am suddenly going to get up and walk. She actually asked my mom how  much longer I would need the wheelchair now that I had leg braces and could walk. Huh?

* The maintenance man who built the wheelchair ramp for my apartment is very nice, but the other day he asked if he could watch me leave my apartment to see how I did it. Um, would you ask someone who walked if you could watch how they walked out of their home? Wanting to be polite, I agreed and about received a standing ovation for the ability to roll down a ramp while holding onto a long scarf that pulls the door closed behind me. He was marveled and amazed. I felt like asking for a quarter for the show. Yes folks, I can get in and out of my own home all by myself, and I can even roll to the grocery store and back solo!! But to watch that show you have to pay in cash!

I decided that, ancient computer usage or not, I wanted to post this. It is a double top ten list that really helps me, at least, put into perspective that even though it feels like I have lost so much to this illness I have also gained so much as well. In the end, my life has never been an easy path but I would not go back and erase a single step because every obstacle and every victory has defined who I am. Not that I did not/do not have times when I think it absolutely sucks because Pollyanna would never last a day in real life, but in the end if anything were subtracted or added I would not be me. And this is me - Take Me as I Am :)

Top Ten Things Lost:
10. Dignity
9. Friendships
8. Security
7. Financial Stability (I owe more than I will make in a year)
6. Trust
5. Joys - Hiking, Exploring Historic areas and museums, Photography
4. Music- Last concert I was able to attend was when I was 18; extreme noise, extreme temperatures, flashing lights, crowds all trigger an autonomic crisis; even attending a movie at a movie theater has about 50/50 odds of triggering a crisis
3. My Beloved occupation as a special education teacher
2. The entire life I had created for myself
1. My independence

Top Ten Things Gained
10. Self Respect
9. Knowledge on how best to advocate for myself and to refuse to be bullied by a white coat
8. Vast self understanding and appreciation
7. The knowledge of what true friendship really is, and what a rare blessing it is to experience it
6. Discovering just how incredibly loved I truly am
5. Losing all fear - I am confident in who I am, willing to put it out there, and if I fail then I get back up and try again because I have that opportunity
4. New Joys- Before this I would never even attempt anything in the visual arts, now I love exploring and do not criticize because I am doing it for the experience (although my skill level somehow greatly increased after getting sick); audiobooks for days when I have little energy; an even greater appreciation of music
3. A renewed appreciation for living in the moment and gratitude for the miracle of being alive
2. Insight into the experiences of my kids and what is asked of them on a daily basis, and just how amazing they truly are
1. Renewed Faith

Now I may hold a spontaneous pity party tomorrow, but I can guarantee it will not last long (those things are poorly attended and get pretty lonely pretty quickly, plus the atmosphere at those is so dreary). In the end, my life is not in my hands - I did not write my genetic code, I did not form the parts of my brain that can not coordinate properly, no more than a healthy person programmed their own genetics or shaped healthy organs. I am just living with the gifts I am given, accepting the challenges (I love a good challenge, a good dare), and discovering amazing beauty along the detours of life.