Every month Vanity Fair magazine has a short interview, called the Proust Questionnaire, that they do with someone famous or powerful or more than likely powerful because they are famous. Seeing as how I have hit a dry spell with topics to write about (be prepared for old teaching stories soon), I decided to interview myself using this Questionnaire.

What is your idea of perfect happiness?
 Knowing that I am loved and that I love others unconditionally


What is your greatest fear?
 Failure, being defined by my illness instead of my passions in life and my longing to make a difference


What is the trait you most deplore in yourself?
Worrying and Doubt
 
What is the trait you most deplore in others?
Hypocrisy 
 
Which living person do you most admire?
Sarah from Sarah's Covenant Homes (see link on side bar) - she is doing what I have dreamed of doing and rescuing children who are "tossed away" simply because they have special needs
 
What is your greatest extravagance?
Fancy flavored coffee for Klaus, my Keurig coffee pot; apps and music for my iPod (I use it for coping)


What is your current state of mind?
Processing and deep in thoughts, wandering within itself
 
What do you consider the most overrated virtue?
Pride and Independence - the inability to ask others for help when needed
 
On what occasion do you lie?
To protect someone's feelings (sometimes)
 
What is the quality you most like in a man?
Love of children, ability to engage with children and truly kneel down to be at their level
 
What is the quality you most like in a woman?
Being above the pettiness and back stabbing that goes on too often in friendships
 
Which words or phrases do you overuse?
"suck" a duck - I have no idea where this came from, and it may not seem like it but my kids have taught me a varied and creative cursing vocabulary
 
What or who is the greatest love of your life?
God
 
When and where were you happiest?
Walking the boardwalk in Ocean City; Hiking
 
What talent would you most like to have?
Artistry
 
What is your most treasured possession?
My journals and books and binders and scraps here and there that contain my writing
 
What do you regard as the lowest depth of misery?
 Celebrating a child's 5th birthday and then two weeks later having her funeral


What is your favorite occupation?
Teaching children with special needs
 
What is your most marked characteristic?
"No one puts baby in a corner" (I had to get a Dirty Dancing reference in somehow); an odd mixture of fragile innocence and wisdom almost beyond a single lifetime 
 
What do you most value in your friends?
Their willingness to be there through the good and the bad, to never give up on me, and to see me for who I am
 
Who is your favorite hero of Fiction?
Jonas from The Giver
 
Who are your heroes in real life?
Children with disabilities who have to work exponentially harder to achieve a goal and who push, who strive, who work and work without giving up and usually do so while still laughing and smiling and just being a kid; and the parents of these special children who serve not just as parents but as nurses, therapists, social workers, advocates and so much more
 
What is it that you most dislike?
The fact that it is still socially acceptable to use slurs against people with disabilities and that we have yet to achieve tolerance, let alone acceptance
 
What is your greatest regret?
I try to live life with no regrets
 
How would you like to die?
So old and well lived that I welcome death with open arms, ready to step into the new eternal life that awaits me there
 
What is your motto?
I will stand back up. You'll know just the moment when I've had enough. Sometimes I'm afraid and I don't feel that tough, But I'll Stand Back Up! (Sugarland)

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.  

Lately I have been reflecting backwards on just how much my life has changed, and I realized that there are big things I miss from my "before" life but also a lot of little things. So I decided to put together a list of the things that I miss the most. I also decided that I would then complement that list by listing all of the things that I truly appreciate that have happened in the "after" life.

Memories
* Driving a car
* Hiking
* Reaching things on higher shelves without having to ask for help
* Being able to wear low socks (AFO braces require high, basically knee socks underneath them)
* Being able to buy shoes easily (AFOs do not fit in hardly any shoes - thus I rock converse with dresses)
* Being able to attend concerts (I lost that to the dysautonomia)
* Being able to take a shower instead of a bath
* Painting my toe nails in less than a two hour process
* Carrying a purse instead of a backpack
* Not looking up to everyone (I have a great view of belt buckles and backsides)
* Teaching
* Swimming without a flotation device
* Being able to break a glass and not have to call someone to come clean it up for me so I don't pop a wheelchair tire
* Wearing my polka dot rainboots and splashing in puddles
* Living in Virginia
* Sitting in a chair without strapping my feet down
* Not glowing in the dark from countless MRIs, CTs, Xrays, and other medical tests

Appreciations
* I totally skip the line at airport security and am through in about 15 minutes total no matter what
* I can run into people who annoy me and then play innocent and no one yells at the chick in the wheelchair
* I am saving a ton of money not having to pay for gas
* I have learned to truly live in the moment because nothing is guaranteed and to appreciate all I have as I am so blessed
* I have some of the most amazing friends and family in the world who have walked this journey with me and never let me fall so low that I could not get up again (Steph, you are an angel)
* God has a great sense of humor
* Laughter can do amazing things (Steph, you made me laugh in a place and time I thought I would never laugh - the tree and the words "hang in there"...priceless)
* Doing the right thing is always worth the cost
* I have a totally new appreciation and perspective on what my kids go through and all that is asked of them, and they are now my heroes even more than before if that is possible
* Every time I was at my weakest God sent me just the person I needed to be there for me and offer me the words and support I needed - a nurse at PWH, a dietician at GWUH, my home healthcare nurse, my amazing friends, prince not so charming
* I have learned to dance a new way to the music of my heart
* Watching how Little Bit sees me, how she asks questions but sees me as just the same Aunt Beth has been the most priceless treasure - my leg muscles may not work so well anymore but I am still her silly Aunt Beth and she loves "helping" by pushing me (even if she can not quite see over the wheelchair to steer!)
* Relearning to eat all over again has taught me to appreciate so many little things that seem natural and go unnoticed until they become a struggle - I appreciate each breath I take, each time I can coordinate movement, each sensation I feel, each swallow, each heartbeat, each taste of food not pureed or from gerber!
* Knowing that God has been with me all of the way and that He has plans to turn what to many would seem a disaster into something beautiful to glorify him!