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