Someone to Lean On
Try a little experiment. Tie your hands to your sides and have someone feed you your dinner. Then, after they inevitably miss your gaping gob, check out what happens when they try, with the best of intentions, to wipe your mouth. There’s just no way it can be done without missing something or smearing some drool across the cheek. Now try all that without being able to speak. These are among the least intimate of my dependencies.
The lucky people who help me with these tasks come in two categories: family/friends, and the people who are paid for it. Each category has its inherent problems.
Family and friends help out of the goodness of their hearts. This always leads to bruised feelings and even anger. They don’t seem to have much patience for the helpful suggestions I constantly offer regarding how not to plaster my chin with pie or dump mashed potatoes in my lap. I guess, since they’re kind enough to help me, I should clam up and let them do it in whatever way they are comfortable…yeah right.
The ones who get paid usually fall between two sub-categories: those who think they know what you need better than you do, and the ones who are so bereft of competence and/or confidence that they have to be told exactly what to do practically every time they try to do anything. Hmmm…which one is more annoying?
To call an ailment that renders one unable to move (in my case, ALS) frustrating is the understatement of the millennium. But I didn’t learn true frustration until the first time I tried to explain to a “certified” Home Health Aide that when I ask, for instance, to have my arm moved, that you can’t just grab it and yank without triggering reflexes that will cause my arm to pull back and probably make you think I don’t want it moved after all. I will sometimes spend as many as fifteen hours a day in my wheelchair. If I’m not put in the right position I stand (yuk yuk) to be uncomfortable for a long time. For me, as I’m sure for many other patients, even simple things have to be done in a particular way.
One day when my regular day-time aide had to take off, my sister came to help show the substitute how to deal with the burden that is me. A few days later, my family and I were having one of our semi-regular conversations regarding the same burden. My sister suggested that I might try to be more compromising. I can totally understand what she means from her perspective. What she doesn’t realize is that in the half-hour it took to transfer me from the bed to the wheelchair, I made more compromises than I care to count. From my perspective, compromise has become the basis of my life.
I’ve been what I call a total dependant for about four years. I’ll never allow myself to get used to it. I am, however, getting used to the way people react to it. For instance, there was a time when a family member could make me feel miserable just by saying a silly little thing like “I want you to know that you really ruined my day,” after finding out at the last minute that he had to fill in for my aide. I’ve reached the point where that kind of thing has almost no effect on me. Besides, it’s not like he was planning to take three nympho super-models out on his yacht. People say all kinds of wacky things in the heat of frustration, and I’m not about to start apologizing for having ALS.
It’s a special person who chooses a career in the service of others. And it’s indeed commendable for family members to fill in for these people when necessary. But when the shift is over, the aide goes home. And if for some reason – emotional, obligatory, or recreational – a family member doesn’t want to help, he or she can always say no. The patient (the aforementioned burden) does not have the luxury of a respite from his/her (my) ailment.
Everybody needs people. It’s no secret that we depend on each other for everything from a mother wiping her child’s runny nose, to a father depending on his son to carry on his bloodline. I find myself faced with the unique challenge of trying to make some kind of positive impact on the world and maintaining some modicum of dignity, while being almost totally dependent on everyone around me for almost everything. It’s been quite a while since I’ve felt like anyone depended on me for anything.
Of all the frustrations I face, there’s none so demeaning as having to be so damned dependent on people. And, there’s nothing so heartwarming as having them to depend on.