(Sorry, no photo -- will add later, when Blogger is more willing to upload an image!)
The latest is that the likelihood of one or both of Noelle's legs being amputated has just escalated from the realm of possibility to that of probability. This is an issue she has wrestled with ever since she left braces behind in her mid-twenties and began using a wheelchair full-time. Not bearing weight on her legs has weakened them considerably and contributed to seriously poor circulation. For the last two years, her legs have been constantly infected, and she has been on a pump to remove the infection for weeks, sometimes months, at a time. Moreover, she has to clean and wrap her legs everyday.
A couple of months ago we had a real scare when the infection got into the bone. She slid by without an amputation that had been threatened by her orthopedic surgeon when I knew guy, trained at Stanford University, showed up on the day of her surgery at the local hospital and had some ideas about how to avoid amputation. Somehow, too, the infection had abated back out of the bone, making the condition less worrisome.
Perhaps that scare and abatement was simply a way to prepare us all for the inevitable -- or may it is not inevitable. That we will only find out in hindsight. At this point, though, it appears that amputation is in the offing.
Now, one has to realize that Noelle does not think about her legs like you and I think about ours. She has never felt them. They have always been limp. (She is paralyzed from the chest down.) So, for her they have been more of a nuisance, once she left behind braces (in braces, they legs were what allowed her to be upright), having to be moved by hand and often prohibiting or at least impeding movement from one position to another. She does not feel her legs, so if she is not looking at them, she is unaware that she has them.
People will sometimes ask her if it bothers her that she cannot walk. Her standard reply is, "Does it bother you that you cannot fly?" Her point is that people cannot "miss" flying because they have never experienced it. Likewise, she cannot miss walking because she has never experienced it.
Years ago when she first started using the wheelchair and was unaware of its complications and dangers, she tore of most of one toe when it became caught in the spokes of one of the wheels. The doctors had to amputate it. I was in the room with Noelle when the doctor popped in post-surgery. Concerned about Noelle's potential negative emotional reaction to the surgery, the doctor asked her kindly, "Are you missing your toe?"
Now, the word miss has more than one meaning, and Noelle understand the question quite differently from how the doctor meant it. "Yep," she replied brightly, "it's all gone."
The doctor seemed shocked. I don't think she had much experience with people who have been paraplegic from birth. "She cannot 'miss' her toe in the sense that you are asking," I explained to her, "because she never was aware of its presence."
And now we have the same issue with her legs. I am not sure anyone in the family was ready to accept amputation earlier -- and prayed that we would not have to (prayer answered) -- perhaps because of personifying it for ourselves and perhaps because of some idea that having legs, even ones that are non-functional, is more aesthetically pleasing than not having legs. However, in reality, the legs are misshapen and infected and not aesthetically pleasing at all. It is stereotypes, not reality, with which we have been living. Now reality has knocked at the door and said, "Folks, you have a choice. Legs or life." Put that way, there is no choice.
We have all gone through this kind of crisis before. Shura, as a teenager, much younger than Noelle, who now has three decades of experience against which to gauge her response, had the same choice: to die with his gangrenous legs or to live without them. He chose life. So will Noelle.