The most interesting thing in my experience over this summer is not the amount and severity of pain I have endured, the accomodations I've had to wager, or the abilities I have no longer been able to enjoy. What has been the most transformational for me during this time is what I will try to describe as I write from what has become my very small 3 foot by 3 foot corner of the world. Literally, with pain, loss of some ability, and needing help with almost everything, the whole wide world has condensed itself onto the small love seat in my living room, which is where I now experience almost every experience I have right now.
What I"ve been trying to explain to my husband is this sense of loss of independence, and thus personhood. It's very difficult to have your own choices and make your own decisions when someone else is doing almost everything for you. He has to go to the store for me, it's his choices that come home, even if i write a list, he decides the size, the amount, the color, etc. Someone else will decide if I get outside that day. Someone else will decide what clothes I wear. I can ask for everything I want, but when you have to describe every choice you would make in a day to have someone else do it for you, think of that! You make a LOT of choices during the day, and now you have to describe to someone else how to do them exactly as you would? Sure for a period of time, it's great and grateful just to get help and you don't care how it's done. But pretty soon, you start caring about the fact that you DO have a way you want things. You do have PARTICULAR CLOTHES you want to wear. But remember, someone else is doing it fore you, and beggars can't be choosers, because pretty soon it can start being very particular, which is where letting go comes in. It's totally fine with me for someone to do it their way. I don't need the control over that, however, getting my way is not the point I'm trying to get across, the fact that I'm still a person is. Here's what I'm talking about: I had a conversation with my husband and I said i could see if this keeps up I"m going to be the cranky old lady on the end of the street. We'll call me Mrs. Nesbit and everyone will avoid me because of how particular I am. But here's what I mean by that. Look at your own life. You buy a house that you like. You place that furniture where YOU like. You put whatever decorations YOU want, where YOU want them. I want the bookshelf here, the books here, these things on the shelf here, etc. You do it because it's your right as a human to make decisions and create life how you like it. Now imagine not having those choices? How different would your life look? How would you feel having no say in the matter unless someone did it for you? So would Mrs. Nesbit really be so wrong to want things how she wants them? What if she hired house cleaners, took pictures to show exactly where she wanted things and expected the people she hired to do it, would she really be so bad? Completely misunderstood and judged, I"m sure. No, I haven't quite gone over to the darkside :), but would the situation described really be that unruly and hard to understand? Just because she doesn't have the ability to do things for herself, doesn't Mrs. Nesbit have every right to have the authority over her decisions?
This is the scenario I've been trying to explain. My husband IS very understanding and I wanted him to know the changes and transformations and thoughts I've been having through this challenge in my life. One of the biggest ones is this sense of loss of independence that I've been describing. When your sense of independence is challenged, I believe too is your sense of identity. It has really been making me take a look at who I really am, what purpose I serve in this life, what I believe in, what I stand for.
The biggest challenge I feel I have had to face through my time in this wheelchair is not how my character is in the face of challenge, nor dealing with pain, or limited abilities. I feel my biggest challenge is that this situation has taken away this sense of independence and who I am. While I know a knew identity will emerge, my beliefs are challenged. I've talked previously about the human experience. That all things, good and bad, make up our human experience. However, when I describe this situation I would say it has taken away my human experience, what it means to be human, my ability to have an identity of my choosing, with decisions I make for my life. So that makes me wonder, what really is the human experience? Okay, that's still true, I feel, it's the experiences you have in life. Then what, I wonder, does it mean to be human? Is it to be described as to have a body? There have been plenty of people who's physical bodies have failed them and still they have altered humanity with far more loss of ability than myself. Does it mean then, to be alive? What does that mean? Because my heart and brain and bodily systems still function, but there have been plenty of times in dark moments where I've thought this is no kind of life. What is the experience, then of being human? What makes you human? Qualifies you as human?
If we have heard before that we are not human beings having a spiritual experience, rather a spiritual being having a human experience, then describe that to me. I know that what I'm going through is part of the experiences you will have as a human and all the experiences that are possible as a mortal being, with a body and life that is not guaranteed. If my decisions, my ability to have my own identity are compromised, then am I still human? Am I still human if I'm not serving a purpose?
Understand this is not coming from a dark place, just that I've had a lot of time to meditate and I've moved beyond the "meaning of life" question to this. I would love your insights.
Perhaps, do we highly misunderstand many people in our communities then, based on judgements we have for them, like Mrs. Nesbit? We have no idea their level of understanding, or why they do the things they do, or what they've been through, and yet are we quick to judge.
We fill our days with "busyness" and to do lists. I understood this was no longer going to be the case for me tasks on my to do list quickly became unimportant. Yes of course, i've gotten to take a look then at what is really important in a day, in a moment of time, but what really changed for me was when my "to do" list became my "ta da" list. The things that stayed on my list were really the important things and when I accomplished them I looked at them with a look of "wow! I did it!" Yay! I got myself dressed, got myself out of bed, went to the bathroom by myself, look now I'm standing on crutches, look now I"m putting pressure on one leg! Yippee!! It was like Ta Da! this is what was the most important to me today. So now, as my body heals and i don't want to go back to a misconstrued caught up "to do" list of busyness, what stays on my "ta da" list? What becomes important, worthwhile and of divine usefulness now? If I take away all the self pressured busy tasks, what really is valued as necessary and worthy of walking for?
This I think is the very sum of the "meaning of life". What valid use and purpose do we have breathing and being here? What are the skills and tasks worthy of getting up and walking for? Why do our bodies decide to do it? To function every day? To heal? Who, what decides it?