I refuse to believe wheelchairs are evil…

Today after my small group, my prof saw me walking down the hall and exclaimed: “Amy, I am so happy for you. You are walking. You should throw AWAY the wheelchair.” I reminded him that the wheelchair allowed me to conserve cartilage which will progressively deteriorate as I get older. The wheelchair allows me to conserve cartilage, energy (SPOONS) and sanity. It also allows me to physically keep up with peers. I felt rather robotic reciting the tried and true  response to why are you are wheelchair user when you DON’T have to be? I get this question a lot…even from doctors.

Its true, no doctor has ever told me to use a wheelchair. My parents certainly have not forced me.  I am free to be ambulatory and I am grateful for it. But people have no idea how much being ambulatory sucks spooooons from me. Walking takes an extraordinary amount of energy, concentration and time. I have to make sure I avoid crowds even crowded elevators so I don’t fall, I have to make sure I don’t walk on uneven ground so I don’t fall. I have to wear certain shoes which are very hard to find especially ones that are either professional and/or comfortable and/or not hideous or at least made for girls. It takes 3 times as long to get to most places by feet (that are not within the confines of a house). And by the time I get there, I hurt or will hurt very soon. I am tired and often a little cranky and at times due to a lovely family trait a bit hypoglycemic. And if I try to carry something and walk at the same time, this takes me EVEN longer and causes pain not only in my legs but also my back and arms. And I certainly can’t get anywhere fast by feet in the case of an emergency. Yes I am grateful I can be ambulatory, I am grateful I can do steps when I have to but I am EVEN more grateful for my lovely wheelchair which allows me to live life.

Because I use a wheelchair I was able to go to college and propel myself independently. I was able to go on many, many family, school trips to Malls, Amusement Parks,  tour various attractions, etc. I am able to walk my dog, I am able to go for walks and some hikes.  I can get around an airport by myself. I can go to the grocery store by myself. And yes I will be able to get through my clinicals and run to emergencies with at least a chondrocyte here and there in attack. And God only knows how many fractures I have avoided by using a chair in crowds, concerts, etc. And with the energy I saved over the years, I have been able to do all the things that really make life wonderful. And even save some cartilage for the occasional non-accessible hike or to dance.

Most people see the wheelchair as some kind of prison that is holding me back from life. I see the wheelchair as just the opposite. The wheelchair is probably the liberating possession I own.  Even more than my car which could be substituted with decent public transport. The Green Machine is not something I am ashamed of, it’s my greatest ally. It allows me to be me.

When did walking become ultimately important for happiness (dare I say a decent QUALITY OF LIFE?)?  Walking is not that great. I have heard running is better but I wouldn’t know. Maybe I can’t even say how I feel about walking because I have never walk NORMALLY in the biomechanical sense. I can tell you that there is nothing more glorious than going down hill at full speed in the Green Machine on a fine Spring Day. The closest I have ever come is galloping on horseback which is possibly equally enjoyable. Seriously average folks who read this blog, please explain to me why walking is so darn important?

I have had two cases recently, one a child with a Kniest like situation and another a child  with CP (the future Dr. Temple will recognize this one).  In both situations the parents of the child were willing to put the child through major surgery simply so the child could walk. In both cases the parents were putting the kid through tons of PT and allowing the child to use their wheelchair, hardly at all. Neither child is much pain or will be spared much physical pain by doing the surgery. Both children LOVE it when they are allowed to be in their wheelchair (b/c they can explore their world) and ask to use it more often but are refused because they have to FOCUS on walking. Neither surgery is a guaranteed success and the CP procedure has a pretty awful list of side effects (including losing sexual function and worse paralysis/neuro issues than the child already has). Is it worth it? It’s just walking. Is worth putting your child under anesthesia and risk the side effects so they can possibly walk unsteadily with a cane?  Is your (as the parents) decision to make? I am not sure what I would if it was my child, well I think I know but I am sure it is different in the heat of the moment.

Why does the wheelchair have to be a symbol of isolation, pain, suffering or even laziness and a lack of motivation? I am not saying all average people should embrace wheelchairs and give up on walking. They have working cartilage, nerves, bones and muscles and they should use them.  But why must they persecute those of us who don’t. Instead of mourning with us, why not celebrate with us the unique lives we live. Celebrate the freedom that comes with wheels and our hands and/or a motor depending on the person.

The world seems to be very concerned that my people are imprisoned by our chairs. I think we are imprisoned not by the wheelchair but by what the wheelchair means to the world. If you want us to come out of our social, physical and emotional isolation, then allow us to. Allow us to be uniquely whole rather than broken. Realize your bipedal basis and realize that what’s important is not how you mechanically move, but rather that you moving and interacting with the world and most all realize the importance of what you do while you are moving and interacting….

Rolls off soapbox

WHERE I WANT TO GO….

USA:
CA: San Francisco, LA, Redding (N. Cali), YELLOWSTONE
AZ: Grand Canyon
UT: Salt Lake City and marvel at Mormon-ness
MT: Ride a pony in MT and/or WY
WY: Ride a Pony, Grand Tetons National Park
CO: See the Rockies from the Ground
OR: Portland, see BK’s Family
TX: See LK in Austin, Houston
SC: Charleston
IL: Chicago
a late addition GO BACK to WVA: To visit NG!
International:
Russia: St. Petersburg, Moscow
Germany, Austria, Hungary, France, Denmark
ITALY
GREECE (going this summer)
UKRAINE
AUSTRALIA: Snorkel the Great Barrier Reef
CANADA: Calgary to see what Pete is so fond of
AFRICA: Kenya, South Africa, Morroco, Egypt
Saudi Arabia (yes I know women can’t drive there, etc)
Isreal
China
IRELAND
WALES
INDIA/Bangladesh especially if I can go with either K or S

Languages I want to learn at least a little of:
Russian
Romanian
Spanish
Hebrew
Greek
Arabic

Where I Have Been:
USA:
ME, MA, CT, VT, NH, NY, PA, NJ, MD, VA, WVA, OH, NC, SC, GA, FL, AL, MS, LA, MS, Minnesota, Missouri (don’t know about all those M? states), CA, WA, AK, US Virgin Islands
International:
Canada: BC, Quebec
Europe: Romania, Lithuania, Belarus, Germany (mostly the airport), France (entirely the airport), United Kindgom (Scotland and England)

Protected: Walking a very fine grey line…

a Stream of Consciousness

“The non-disabled world tells disabled people generally that our lot is unavoidably tragic, and if we’re smiling, we’re smiling through tears and despite suffering. In the face of those powerful social forces, I believe that lving our strange and different lives, however we choose and manage to live them, is a contribution to the struggle [for equality]. Living our lives openly and without shame is a revolutionary act.”
Harriet McBryde Johonson
…a hardcore crip
I just finished Too Late To Die Young by Harriet McBryde Johnson. Absolutely brillant. Especially the last three or four chapters. It made me want to go become an activist almost as much as the movie AMAZING GRACE (go see it). (Brit be proud). Unspeakable Conversations still gives me goosebumps even on my second or third read of course. I will never forgive myself for admiring some of Peter Singer’s work considering his other works. Alas Johnson struggles as well.
I couldn’t help though to think about Laura (Romanian friend who died 2 years ago) as I read the book. Harriet and Laura have a lot in common. Harriet and Laura refused to subscribe to their culture conception of disability and to people’s expectations of what they could and couldn’t do. They are both writers and activists. And yes they both have nueromuscular diseases. The differences are stark however. Where Harriet succeded in getting an education and living life on her own terms. Laura was denied an education partly out of sheer predjudice and partly because her country was falling down all around her. Where Harriet refused to believe the statistics and lived life despite of diagnosis. Laura was haunted by hers to the point that in the months proceding her death she was having panic attacks not out of fear of death itself but on running out of time for life and her work. Laura died young begging for more time to help her people and live life, Harriet lives on. Harriet is what I think Laura would have been if she had been born in a first world nation or even in Romania but not in the mist of a Ceaceseau’s reign of terror.

Ironically we spent most of today learning about neuromusclar diseases. It was hard. As I read through Robbins Pathology section on Muscular Dystropy I was suprised by what came to my mind: “So what?” As I looked down at the little colorful blobs of protein and chemicals I was struck by how little it mattered to me. I was a little terrified how little it mattered to me. Because those blobs are supposed to mean something to me, they are supposed to be worth learning about.
I spent a good protion of my journals in Romania whining about what was wrong with people’s perceptions of illness and disability. I was so sick of being told there would be a mansion in heaven for my people and an institution for them here on earth. It didn’t cut it for me for them to bear their crosses. It was that furious summer of futile theological debate that cemented my desire to go to medical school. My preaching did very little where my assisting thearpists and doctors at least gave people something soild. It is very hard to preach liberation when no one can decide what the heck that means.
Not that I didn’t try to figure it out, I spent a year and half writing about liberation theology and all that debate. 86 pages later, I got a dorky award and a handful of medical school acceptence letters. I was tired of debating. I put my theology books in boxes and left them in another state under my bed next to my box of My Little Ponies from the 80s.
Now as I sit and look at Robbins Pathology, I articulate what has been coming for years. Medicine isn’t going to cut it for me. Its not that I don’t want to be a physicain. Its not even that I don’t want to be in medical school, I can’t just do medical school. I can’t just be a doctor. I can’t subscribe to some sort of theory of physical wholeness or lack of wholeness as the bottom line. A world of nothing but science isn’t the world I live in. I can try to pretend but it silly, its like my life is a play…Look this is Amy as medical student, isn’t that interesting?
I think I want to take some time off from the medical world. Don’t worry i am not going to do anything rash. But I do think I am going to take a year after 2nd year and go get my Masters in either International Development or Ministry. I also think I might go to Scotland or England to do it. If I stay in the US, I am not staying the Southeast.

by some crazy twist , my parents approve.

The End.

time bombs

Remember when we all hee-ed and hawed about how medical school was going to take a toll on my fragile little cartilage matrices. How I would be fighting a battle with my body on top of everything else. Rememer all that?

Well my wrist bailed out on me in Jan and I sincerely afarid that a shoulder may be next. i was  do my spring cleaning, packing away sweaters, organizing my closet, etc. When all of the sudden my shoulder slips in the wrong direction. I brush it off. When I was 14 at summer camp I partly seperated my shoulder  (not a full tear). Ever since then every once in a while, things slip here and there. However, the pain has got progressively worse over the last several hours.  But I have full range of motion just a lot of pain but only a little swelling. I have decided I shall wait it out. I dug out my sling from my wrist surgery and am currently wearing it.  I tell myself I just made the joint angry…I try to block out muscoskeletal anatomy with its Glenoid labrum and rotator cuff tears. Those things require time and treatment, bursitis or a bad arthritis day are manageable and fit in between memorzing motor pathways and labeling brain diagrams.
if I rest it will go away…right?

I am operating on that principal till at least Tuesday. I go see the orhto for my wrist…there simply isn’t time to go see anyone till then.  So shoulder, suck it up.

Rest, NSAIDs, sling…. see I am such a good patient…marvel at my skills….

and complete inabilty to deal with the reality of possibly have blown some tendon or ligament to bits.