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.

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!

Where is God when the children die
When a meager existence is shattered to rubble
And an entire nation lets out agony’s cry

Did he close his eyes
Did he turn his head
Did he ignore the suffering voices
Of both the living and the dead?

Was this the land of the truly forsaken
Those born without to die without
And in between to struggle and anguish without
Is that the truth of what their lives are about?

Was God truly absent
As the world crumbled and cracked
Was he preoccupied with other affairs
Or is it perspective we all lacked?

For God felt every moment of pain magnified
He cried along with every single tear that has been cried
His hands were beside those digging out the survivors
And his arms were wide open to greet all those who died

His promise is in every prayer sung in the darkest of nights
Hope comes in one volunteer, one life at a time
Compassion overflows in the giving, the sacrifices of an entire world
Love is living and breathing in humanity at its prime

God was there from the moment their world fell apart
In the rescuers he finds hands, in the journalists he finds voice
From the doctors he finds healing, from the populace he grows hope
He is there, but it is our presence that is the choice.

It has been a very long time since I have written anything here. Extremely long by my standards. I have been busy cleaning house in many ways. Well, first I was busy sending out prayers of Thanksgiving for the invention of TamiFlu as I dealt with a low grade version of the flu my mother got for Christmas. She got really sick, I got preventative Tamiflu and was able to get through with minor symptoms. Considering I am a living, breathing risk factor I call that a victory. I ended up staying with her for about 3 weeks instead of the 10 days I expected around Christmas because I wanted to make sure she was over the flu before I left, and I selfishly did not want to bring the germs home with me. :)
When I got back to my apartment I realized that I had left it in a mid-Christmas state of disorder. I dislike disorder a great deal. Now, my apartment is tiny - no more than about 500 square feet on a good day- so something as simple as a few items of clothes on the bedroom floor make a big difference. This was disorder and chaos. I totally rearranged just about every storage system in my house - my bookcases, my "office space", my kitchen cupboards, my dresser, and my arts and crafts storage. I am ignoring my closet because as the only closet/built in storage area I have decided it is a useless cause and as long as I can close the doors it is all good. I have no coat closet, no linen closet, no storage area so my closet serves more functions than is probably legal. Then I ended up washing almost every dish that I own. I hate dish washing because 1) I am the dishwasher and 2) the sink is not handicap accessible so dishwashing involves this awkward sideways contortion. I have tried using my braces and standing to wash dishes, but since my legs turn an awful shade of purple gray with white blotches after I stand for more than a few minutes, and I eventually develop syncope if I do not sit down, this has failed to be successful. Apparently my dysautonomic circulatory system has issues with sending blood to my legs and retrieving it when I am in an upright position. It is quite charming - I call it cadaver legs. ;) Anyway, I also vacuumed and mopped the entire apartment - I love hardwood floors. Vacuuming and mopping in a wheelchair should be Olympic sports with points for not tying yourself up in the vacuum cord and not creating tire tracks on the freshly mopped floor.
Mentally I have also been cleaning house. For some reason I was rather delusional and thought that the first year of dealing with all of this medical stuff and all of the changes in my life would be the most difficult. I was wrong. The second year is actually proving to be harder, I think because the true reality of it is sinking in and I have to let go of the illusion that there is ever going to be a simple answer or simple treatment/cure. Also it has been difficult because this illness is proving to be a relentless monster and it continues to progress. It is now impacting the strength in my arms, and I am noticing more changes in my lung function (I do not have the results from the PFTs done in December yet). I have been referred to the Muscular Dystrophy Association Clinic, for which I need to make an appointment, and I also need to follow up with my primary neurologist for treatment of the symptoms - primarily the dystonia, and to assess the upper body weakness. So I have been dealing with the frustrations and the fears, the doubts and the sadness. I have been cleaning away the emotions and the false beliefs that will not do me any good and making way for a new start, for the hopes and dreams and gratitude and joy that usually define my life.
I hope this makes sense. I have every intention of writing more soon, and writing more often now that the thorough housekeeping has been addressed.