My upbringing is particularly Judeo-Christian, so of course I have been taught that is it always better to give than to take. Couple my childhood with the American values of self-reliance and individualism, with plenty of room for my typical male socialization, and you can get a sense of how ALS wrecks what I’ve so carefully bought into from the time I was just a child. I deliberately am using the word take, because it is an active verb. To receive is passive, but I find myself having to deconstruct the old mores in a way that actively seeks out help and support. I’m not just a passive vessel receiving help. Ev and I have come to realize that taking help is vital to our living. And there is good and bad that goes with the taking: There is grace, but getting to grace in the taking requires a certain reconceptualization of the old lessons about giving.
This past weekend, Ev and I have been given the grace of taking. We have to move. I just cannot negotiate 18 stairs to the bedroom and a bathtub that is not walk-in anymore. It is stupid to even try. So, as we are getting the house ready to sell, we are moving into the apartment in the basement, taking us from a big two-story house with three bedrooms to a single level with about 750 square feet. I cannot tell you how much energy I save with this arrangement. But it is a complicated decision, and it means breaking through a lot of denial and grief about loss of physical energy and function. And it means that we need help, because there is no way to pack up the stuff of our lives that needs to be gone, or to move the things from down to up and up to down, by ourselves.
This is where I realize that ease has been interrupted with dis ease. We didn’t come to this place with ease. In our minds, we were going to live in this old house and entertain grandchildren with hide and seek in the stairwells, and fun in the yard. Such ease has to be given over to the realization that dis ease is now upon us. That is the hard part of the taking. And we hold a clarity about these realizations that leaves us raw and on the surface. When old friends showed up to help us pack, I cried. Couldn’t help it. But in these friendships, was the first grace—they knew how hard this was. And in this writing, I am calling them out by name.
A week ago, Laurie, Sophie, and Sharon got us well started with getting the kitchen into boxes. Over the weekend seventeen people came by and packed, carried, deconstructed, reconstructed, and loaded us into our next step in life. Our brother Greg organized the POD, Cecilia and Camille, and Cindy pulled stuff out of closets and cabinets and boxed or organized. Jonathan, Bryan, David, Don broke down and carried out. Teri and Steve—our almost in-laws–packed and boosted us up. One or two would need to leave, only to find one or two showing up. Just as we were thinking, “Well, we’ll have a lot to do tomorrow,” in popped Kristen, Rhonda, and Kelsey to continue packing. Sunday, Don and Ken, Greg and Cindy, and the wonderful Caroline and her boys helped finish it up, so that we are now safely ensconced on one level, and I feel like I am in a safer place.
Usually, I start out these little life lessons with the down-side, and then I finish with the up. This is a little different. It took the gifts of grace, from friends in our house, to point out that the path of ALS strips away what I thought I valued. It isn’t that I cannot or should not still strive to give, but the gifts of friends and family, who would take their busy weekend and offer to help us do what dis ease dictates we cannot do for ourselves, points out that giving and receiving is a false duality. Just as one who knows hunger knows food in a different way, I am getting to know giving by the necessity of taking. The take for me out of all of this, is that we couldn’t come to this place without the necessity that growing disability brings.
I am physically unable to ride this out by myself anymore. Dis ease is like that. It changes what worked for you before, deconstructing the old normal of John Wayne in the saddle—the guy cleaning out the gutters, organizing the major events of our lives, and yes—packing us up for a move. You really have to learn how to take with dis ease, seeking the grace in taking that nobody really mentioned when I was growing up. It is just the physical reality of dis ease.
And I have to say, the giving of others inspires me to follow dis ease’s path wherever it will go…. no matter what it takes.
Yours in ALS,