I have a benign essential tremor. My hands have a tremor. It’s worse in my left hand than my right. Some days are worse than others and I can’t seem to pinpoint any reason why. I am, it seems, subject to the whims of the disorder. And now as the condition progresses, on some days my head will shake and my forearms will feel weak. It’s progressing and intruding more and more into my life.
Even though this is not life-threatening and mostly only a nuisance, this condition has become a reality that has significantly shaped my life. I will lift a glass to my mouth now only with my right hand. I avoid putting myself in a position where I have to pass something to someone, and if I do I make sure I can do it with my right hand. I keep movements with my arms and hands close to my body since extending my arms makes the tremor worse. If I have to fill out a form and my tremor is bad, I will excuse myself to do it in private so as not to draw attention to it and because it just takes me longer. I make jokes about my illegible handwriting (yes, even worse than my normal illegible handwriting). I have discovered that I hold myself in certain ways, my hands curled inward. The fine movements of stabbing something with a fork or the related task of getting the something on the end of my fork to my mouth are more and more of an embarrassment to me.
I play my guitar less.
The biggest change, however, at least in its impact on my life is related to the Lord’s Supper. I serve a congregation that practices the Lord’s Supper weekly. We pass it among ourselves using trays. I cannot pass the juice tray without sloshing the contents. And I absolutely cannot get one of those little cups to my mouth with any surviving liquid. This means I have to position myself just right to receive help. I have to be between people who understand my condition and who will help me. I now practice intinction, definitely not the norm in my tradition. I break off a big piece of the unleavened bread we use, hold it, and dip it one of those little cups. (I follow the lead of my father here, who also has an essential tremor. It’s a genetic condition). This nearly always draws looks from others. I worry sometimes that they think I’m making a point by practicing differently than everyone else.
The Lord’s Supper now takes planning and coordination for me. As a single person, I have to find two people who will help me, one on either side. And there are friends who understand and gladly help me. Recently, however, the people with whom I normally sit moved to Oklahoma and instead of conscripting others to help me (which I know shouldn’t be humiliating, but is), I have found it easier to sit on a stool in the back of our worship space. It’s not in a row, so I don’t have to pass anything to anyone. And those who serve hold out the trays to me to serve me, just as a matter of course, so that I don’t have to explain to them that I can’t hold the trays and serve myself.
This isolation from others during a time of “communion” is certainly ironic, and has been the occasion for much reflection. It has become a symbol to me for the kinds of things that separate us from life with others. Though my tremor is a minor medical condition, I am becoming increasingly aware of the ways that its presence in my life separates me from interactions with others. And I am also aware of irrational thoughts it brings related to embarrassment and even shame. And I will go to great lengths to avoid these things. I even hesitate to write this blog for all the helpful suggestions or treatments that will be offered to fix me, which though well meaning, only serve to highlight my feelings of embarrassment and shame.
To state this theologically, I have become aware of how illness, in my case a tremor, separates me from the shalom of God. A good and well-ordered world in which I am a full participant.
I have been deeply moved by my friend, Ryan Woods’ blog. Ryan is fighting a rare and lethal type of cancer. It’s in his spine. It might very well take his life. It has absolutely turned his world upside down. And he has blogged about it with openness and courage and amazing insight.
I was with him a few weeks ago (he is a working with God and neighbors to start a new missional community in Vancouver, WA), and we talked some about his illness. I found myself being very careful about how I spoke to him. This cancer was now something between us that needed to be negotiated. It created awkward moments, both for him and for me. And we are friends. I cannot imagine what kind of negotiations fill his life as he lives as a husband, father, friend, and stranger in this world–the countless interactions in a day which are now made more complicated by disease–by dis-ease.
I am reminded of the story in Mark’s gospel when the leper begs Jesus to make him clean. Not well. Clean. Not only free of disease, but clean. Not simply healthy, but no longer isolated from life, from shalom, from wholeness, from life. Jesus does make him clean. And sends him to the temple to do what is required for others to recognize him as clean as well. And this is what I want him to do for Ryan, and for others whose disease creates separation in the midst of life, and even for me. And I am glad that Ryan’s sins and mine are forgiven by God. But salvation would also have to include this–this restoration to life, this overcoming of separation and alienation, this conquering of death and unclean.
“And we who have the first fruits of the Spirit, groan inwardly, as we wait for our adoption, the redemption of our bodies.”