Last night, I dragged a basket of dirty clothes into the hallway (you would absolutely laugh at this sight!), sorted them and did three loads of clothes. I folded them, and I placed them in appropriate piles for Ev and me to put away. If you are scratching your head and asking, “So what’s the big deal?,” I get that. In another life, I would have seen this as just another normal weekend, but the laundry represents a greater reality for me. It means that one of the payoffs of moving from a 100-year-old house with multiple stairs into our temporary digs is that I get to be home productive again, at least a little bit. I cannot tell you the psychological lift this gives me, to be able to help a little, and it made me start thinking about other laundry lists that exist for those of us who are in the world of disability.
When you start losing physical function, the difficulty of loss is multiplied by the meaning that accompanies it. I learned early on in this dis ease journey just how much of my self-worth I put into my ability to physically do things. I was still trying to get my head around just what kind of losses I faced, when Ev and I met with a physiatrist at Mayo. She told us about PALS she had known who had done quite well for over ten years. She said it had to do with their ability to “live inside their heads.” I certainly can see that. When all you have is your intellect, then the ability to live on that level is important. But I also have to say that most of us see being human as projecting our selves physically. In that light, doing the laundry takes on a much greater meaning.
One of the things that I keep having to relearn is that I cannot do things the same way I used to do them. It would be easy to interpret these differences as loss, deficiency, and debilitation. And I have to admit that I have seen my differences from the loss perspective on more than one occasion. But it doesn’t have to be this way. I have learned that difference is different, period, though others may not be so generous. We humans carry such strong images of how things should get done, that deconstructing these images to accommodate new realities is difficult.
The laundry is a good example. My old normal picture of the laundry was that I carried the basket to the laundry room, and I stood up to sort the laundry. I loaded the clothes, and when they were done, I put them back in the basket and carrying them to the closets and dresser so that once folded, I could easily put everything away. All of this happened pretty quickly once we were through the wash and dry cycles. My new normal reality is that I must drag the laundry on the floor, because I don’t have the strength to lift it. I do this while holding on to my walker, because I don’t have great balance. I rest after each step, so that I don’t overtire myself. And I fold the clothes while sitting down, again resting even in between articles of clothing. This may sound like a lot of effort to do something so simple, but that isn’t the point. By doing the laundry, I am again a contributor to the maintenance of our home. I have shifted from the person who waits for someone else to do it, to the person who does things for us. This requires me to make a head shift, and it means that my dear love has to shift her head as well. It means that she has to let go of her pictures of what it means to do the laundry, or fix the coffee, or any number of other “meaningless” tasks that get you through the day. As so often is the case, it isn’t just about my interpretations and abilities to physically do something. It is also about the interpretations and abilities of others to let me do things differently.
I don’t deny that there are things I cannot do. This past weekend, as we emptied our home in preparation for its final sale this week, I only traversed the steps into the house once. I spent most of the time sitting and watching, offering guidance for what stayed, what went to Goodwill, what should be trashed, and what got loaded. Such guidance had to be done, and I could do it. It was mostly head work, not like doing the laundry, but important overall. And the friends and family that helped us out were able to get their heads around this change. They allowed my knowledge and organizational skills to work, and they offered to be my legs and hands. With this in mind, consider those people who work through their disabilities, who are able to maintain their work, who are able to find ways around their so called inabilities. And consider the world of the temporarily able bodied, who have conceptualized the workings of the world as only operating when it performed by able bodied humans. It is not a question of whether there is a different way to do things, it is a question of helping the world to understand that there is more than one way to skin a proverbial cat.
I continue to work in a job that I love, and I am sure that given its more public nature, questions arise about whether a PALS can be dean of a school. I can only say this. I don’t do the job the same way that I used to do it. I continue to learn and relearn that there are other ways to accomplish the same things, that the strengths that I used to rely upon such as endless energy and the ability to take something and move it quickly, are gone. But if you cannot live in your head and do university work, then where is such a phenomenon possible? I find myself in teaching mode a lot more. I find myself turning the hand and leg work over to others, where before I might have just done it myself. I take naps. And I can see that there are strengths to this approach.
As my friend Jane observed last evening, when you empower leadership throughout the organization, you get a whole different animal. Your people learn to be strong in their competence, and they learn new abilities that they might have waited to acquire had this disabling opportunity not arisen. In my present position, I think I can make this work. As long as I can be the mission reminder, the voice of the raison d’être, as long as I can furnish experiences that will help to teach the skills, competence and attitudes of a successful college, it seems to me that my school and university could actually see real benefits from the dis ease experiences of one of its leaders.
It is a lot like doing the laundry. There just isn’t one right way to do it, and the real lesson here is that we are more limited by our imagination than by our disabilities. It isn’t a denial of the real physical challenges, but to embrace the great challenge represented in these questions: “What in our temporary able bodied reality is limiting our imaginative capacity. Is the disability in the physical reality of my colleague or friend, or is it in my head because I cannot imagine another way to do it?” I think we would all be better off if we thought this way. Then we could truly get the laundry done, whether we carry it, drag it, or throw it on the floor.