|DISCARDED CRUTCHES IN THE SANCTUARIO IN CHIMAYÓ, NEW MEXICO|
photo: Dustin McClaws
From a recent exchange with Betsy Cullerton, a NYC lawyer with severe birth defects. Betsy underwent four major surgeries as a child and has been in a wheelchair all her life.
I spent some time in
over the weekend. My parents have several acres on the lake, and I haven’t worn out my welcome. My mother is a wonderful gardener, and with all of the rain across the Michigan Midwest spring has exploded. I was out in the driveway, listening to the frongsong gurgle and belch in the ditches and gulley. A flock of birds rested in the tree above me. The lake, sequined and shining gave the impression of something solid; I longed to walk across it. For a moment I believed I could. Looking out over such an expanse, I felt such a deep desire and longing to return. I prayed over the feeling, and I realized that it was a longing for God. The world is gorgeous and life pure gift. The world is not my home; my joy is veined, riven with exile
I was very lonely as a child. While my cousins were down at the beach, I would be off in a wooded area, or reading. Thank God for books. They have comforted me through many long afternoons. The loneliness was painful and uncomfortable. Like a hairshirt. But I have grown used to the mortification. There is a mysterious solace in it I know to be God. But I must accept being strange to others.
I know that many consider my life to be one of sorrow and limitation. This is particularly true in
where illness and frailty have become taboo and rude. I often feel uncouth, like a dinner guest picking my teeth at the table. Don’t I have enough good manners not be sick? And if I can’t be well, can’t I at least have the decency to hide at home or in an institution? But there are moments of inexpressible sweetness and joy that bloom in the dessert. I don’t know what grass feels like against my feet. I’d like to think that in heaven I will be able to roll in it with the dogs. But I do know the Braille of the land-its bumps, slopes, and curves. We have grown so afraid of pain, suffering, and sorrow we’ve forgotten the laughter in tears, the joy in sorrow and the comfort in pain America
I just read your post on the burdens of love and the burden of books. I had to laugh. I once felt as you did. But now that I have a kindle, I love it. My hands and wrists no longer tremble with fatigue as I read. And it is easier than ever for me to be lifted up and away through literature. My father loved to read. From him, I inherited my ravenous appetite. While I was recovering from surgery, he gave me an illustrated copy of Anne of Green Gables. The story gave me so much joy. And dear Anne! So much happiness after such terrible affliction. She taught me so many lessons. Then there was Narnia and The Velveteen Rabbit, stories that filled in the Gospel for me. Later I borrowed from my brother’s collection. He introduced me to Tolkien, Herbert, LeGuin, Edward O’Brien, and early Steven King. He did not hoard his books; we passed them freely back and forth. They were exceptions to a fierce privacy we both respected
The burdens of love are much more difficult. I’ve hired many caregivers throughout my life. I tell them the job requirements, travel and pay. They begin with enthusiasm, but often it wanes. Caregiving may be a job, but it requires a lot of love and tolerance. Tolerance of my frailty, tolerance of weakness. We negotiate and compromise. With some the love has frayed and broken within a month. With others it has been renewed daily. When they would quit, I would take it terribly personal, as though I was a burden. But that’s a sort of denigrating narcissism to which I am prone. My weakness gives others an opportunity to love. If they choose not to accept it then they are not required to do so. Each day I have the opportunity to love others in their weakness as well.
It is my great regret that I cannot perform corporal acts of mercy-helping a friend move, driving my mom to the doctor, or changing a niece’s diaper. When I feel this way I often think of Martha and Mary before the Lord. Martha is busy cooking and cleaning, consumed with the physicality of hosting. Mary sits in quiet dreamy contemplation. My acts of mercy must be spiritual in nature-consoling, listening, praying and writing. Secret acts. Little acts.
|CHRIST HEALING THE PARALYTIC,|
As always, your insights are about three levels deeper than the world's, or mine, so I thank you for them. "We have grown so afraid of pain, suffering, and sorrow we’ve forgotten the laughter in tears, the joy in sorrow and the comfort in pain"...You know, this is the whole heart of Christianity, that we are called to joy, and that the joy is available even in the midst of sorrow and pain, and in fact, our joy is not COMPLETE without sorrow and pain. To love Christ is to see and experience the world in a certain way, a new way, a way that is totally different than the way of the world. And as he said, it drives a sword between people! We are so afraid of pain we don't know what to do with it, we hide it away, we avert our eyes. We have no sense of liveliness or playfulness or getting our hands dirty, of looking pain in the eyes.
Someone, I'm sure a very dear woman, just took me to task for mentioning on my blog that my beloved friend Lisa G. and I had had a little spat this week that we had VERY MATURELY resolved because, as Lisa said, to stay mad would have been retarded, and of course the woman had a developmentally disabled or whatever the politically correct term is son, and is part of a campaign to wipe the word "retarded" out of any thinking person's vocabulary. And because I felt this woman's wounded heart was more important at the moment than my "right," which I dearly wanted to argue for, to use a perfectly good word that means slow, for heaven's sake, and is therefore beautifully descriptive and even poetic, I apologized and took the passage down without making a federal case out of it...
From Betsy, a few days later:
I am very familiar with those types of speech codes. When I first came to
I wanted to work with Access Living, a nationally recognized Center for Independent living. While I appreciate the work that they do, some of it was deeply overwrought, a reflexive outrage had replaced genuine human emotion. Take for example, the Jerry Lewis Telethon, a favorite target of advocates for many years. Did the telethon promote pity? Of course. But pity acknowledges the pain of another, something the advocates cannot stand. In a valiant effort to show our humanity, they simply whitewash pain and disfigurement, and present a super-competent portrait that is as fictive as the one they tried to replace. Chicago
I am very familiar with those types of speech codes. When I first came to
I work in City Hall. I see many people struggling in walkers, or ill-fitting obsolete wheelchairs. Perhaps the walker is their choice, an effort to retain independence. Their steps are so deliberative and labored, that I have to believe their lack of equipment was forced on them rather than chosen. My heart is moved to pity, because I know how much it hurts to not have what you need. Depending on who you speak to, the preferred term for people with disabilities is people with special needs. This phrase is the linguistic equivalent of pine air freshener in a taxicab. If I really wanted to convey the pain, sorrow, and humiliation of my body, the word cripple captures it perfectly. Along with “retarded,” "cripple" has been thrown in the politically correct trash-heap.
Where I most diverge with the advocates is in their belief that if every doorway were widened, every curb leveled, every toilet raised, every caregiver fully funded, the pain and alienation of my condition would be greatly lessened and I would be able to pursue my dreams fully in society While that would be wonderful, no law, no government, no politician can soothe my inflamed and wounded heart. Even of the world were perfect, I would still have a fallen and broken heart. That brokenness is what we can no longer face. We cover it up with speech codes and sensitivity training. An institutionalized culture of grievance has stripped us of the words I’m sorry and You’re forgiven.