Ten years ago tomorrow I went over the handlebars of my bicycle and landed on my head. I have written about that day elsewhere. Since that time I have been grappling daily with being brain injured. Of course, before that day I grappled daily with being human, an enterprise that continues, but brain injury complicates it considerably.
In fact, “a complication” has been a useful way for me to think about brain injury. My injury is, of course, in common parlance, “a disability,” and the Social Security Administration has recognized mine as such. It is a credential I would have preferred not to have needed, but it makes me officially disabled.
Yet, I don’t really think of myself as a disabled person, any more than I think of myself primarily as a white person, an ordained person, or a male person. All these realities inform my identity but do not, even in the aggregate, constitute it.
I have always had an allergy to identity politics, and question whether it is helpful for one to think of oneself as primarily identified by race, gender, sexual orientation, or for that matter, disability. If pressed for an identity I would pick a really big one, such as “created in the image of God,” and its new creation correlate, baptism. I say this because I believe that any identity that ignores our relationship with God is bound to be too narrow, and lead to some form of self-deception.
But I understand why people with disabilities often choose to make their disability a primary identity, because other people certainly use disability as a social marker, just as they do for race and gender. If you are in a wheelchair or walk or speak differently that will be part of what defines you. And many people can’t look beyond the obvious. People have a fear of disability, that if that can happen to you, it could happen to them. I think there is also a tendency to distance oneself from the disabled by blaming them for their disabilities. They must have brought it on themselves by bad behaviors. This helps us maintain the illusion that we can have control over protecting ourselves from becoming disabled by being careful. And sometimes it is true that persons acquire disabilities from poor life choices, but most times that is not true.
My disabilities are largely hidden, since I am able to walk and speak. Nonetheless, enough people in my community know about my accident and its aftermath that I find myself in awkward social situations where people aren’t sure how to approach me. My memory is largely unimpaired (and was good to begin with), but the assumption is that brain injury is largely about memory loss, so I find myself in these painful (and sometimes comical) encounters in the supermarket where people are trying to tell me a story but filling in huge amounts of unnecessary back-story (like the names of their kids that I baptized and have known for over twenty years.) Others talk really slowly and enunciate carefully, and I must resist the temptation to say, “I’m brain injured, not stupid.”
Many people just want me to recover and be better, though I will always have a brain injury. “How are you doing?” they ask empathically and I really want to say fine, but, of course, I am not fine, so I resort to something like, “I am doing OK.” Sometimes I say, “For a man in my condition, I’m in great condition.”
A lot of dealing with injury is self-care, and it is frustrating how much of my time and energy goes into just keeping healthy. There are many things I could once do but now cannot. One of the reasons I resist disability as a primary identity is the temptation to use it as an excuse to do less than I can. For I can still do many things, and need to do them, even when it is hard. The daily challenge is to find the sweet spot between too much and too little activity, and of course, when you live with others, this balance is not always completely under your control. Sometimes I choose to overdo just because the thing I choose is important enough to me to pay a price for several days. But I can only do so much of that or I risk my health, which is easier to protect than to restore.
There is also a level of dependency involved with disability that is very hard for me. I rely on my wife and children and family for love and support and a great deal of care-giving. So in some very real sense my injury is a family affair, something that has to be factored in to all our interactions. I want to be strong and brave and independent, but have to face my reliance on others. The positive part of this is that I often experience their care for me as grace, that is, as something freely given though undeserved. And I am often in awe of their patience and forbearance with me, for I am not always the easiest person to be around, especially when I am tired, which is much of the time.
Even before the accident I was powerfully moved by the pathos at the heart of the Christian story: how God’s power is made manifest in the weakness of the cross of Jesus Christ. I have recounted often before that my mother died when I was 18, and that my return to Christian faith as a young adult was the result of a struggle to make sense of a world where such losses (and others) take place. It shouldn’t be a surprise that I became a theologian of the cross, which I see, not as a symbol of violence and brutality, but as the place where God’s reconciling love encountered human sin and overcame it.
These last ten years have made me more acutely aware that faith lives in the midst of weakness. Disability has sharpened that awareness for me, but one doesn’t have to be disabled to experience human weakness. As a pastor for over thirty years I learned that people undergoing a crisis of loss or humiliation could often hear the good news of the Gospel in fresh new ways, or even for the first time. In such moments God speaks. Perhaps only when enough of us is cleared out of the way to silence our own voices can there be the space for us to hear God.
My injury and its deficits also complicate my spiritual life, and that too, has made me aware of faith as a gift that I can’t create in myself. “Grace,” I once heard James Forbes say, “is where you find love in full bloom in a climate where it is too cold to grow.” I’m not very good at faith anymore, so it seems even more of a grace when it is there at all.
During my long ministry I was privileged to spend many hours with the aging and dying. They have been my teachers, helping me prepare for my own aging and dying, and also for disability, which shares many of the same features of limitation and loss. In all these challenges of living one relinquishes features of your previous experience of living. This is painful, but faith can enable us to exercise “a holy relinquishing,” that is literally “graceful.” I have been blessed to witness this again and again among those who retain a wonderful dignity in the face of the indignities visited upon the old, the sick and the dying.
Ultimately, grappling with the complications of disability (or just humanity through its life stages) exists within a horizon of hope. This too, is a gift of faith. I have stood at hundreds of funerals and proclaimed, “‘I am the resurrection and the life,’ said the Lord,” and that promise gives me hope.
I don’t know what that new reality will be like, but I cling to bits of Scripture that give us hints and clues. Paul says, “For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known. ”(1 Corinthians 13:12)
The scripture that speaks to me most about disability comes from the vision of John the Divine as reported in the 21st chapter of Revelation. John looks up and sees a new heaven and a new earth, and a New Jerusalem coming down from God out of heaven. He says, “God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.”
I take comfort from this promise that God’s ultimate intention for us is a community where we don’t suffer pain or death or loss. That would have to include disability. No more sleepless nights, no more depression, no more chronic pain, no more anxiety and fear, no more shame. No more of all the things that beset us in this earthly life. Quite a vision!
This horizon of hope often allows me to bounce back from my set-backs, to experience forgiveness for my failings, to face the challenges and complications of each new day, and to enjoy the quotidian little (and sometimes not so little) graces that visit me unbidden and unexpected.
>Rick,This is very beautiful. I would like a chance to share it with others, if I may, at the conference I've helped to create for the UCCMIN (mental illness network) jointly with the UCCDM (disabilities ministries). It's in September in St. Louis. See http://www.wideningthewelcome.com. It also makes me think I'd love to have a conversation with you some day about the intersection between traumatic brain injury and mental illness, and the graces and the forgivenesses therein. And, I want to send you an article my father wrote about six months before he died called "Preparing for Death." Thanks again. Blessings to you,Carrie Bail
>Thanks, Carrie. I'd be glad to have you share it. I'll look forward to getting the article from your father.Best,Rick
>Far and away your most beautiful, moving and powerful essay!
>Thanks, John. They always say write what you know.
>Rick, I responded on your facebook page. You and I go a long time back and I am so glad that Carrie Bail has mentioned the national gathering in Sept. for which she is on the Planning Team. There are yet many "gifts" that come out of our own weaknesses, whether or that is our "disability" as in my having had a stroke 17 years ago, or my sudden hearing loss in one ear. Still in my weakness, God's power is made manifest. (2 Cor. 12:9. The text that soars and sears into me.) Any possibility you could attend the St. Louis Conference? I, too, am retired, and therefore have much flexibility. Grace and peace dear brother in Christ. Alan Johnson
>Alan,So good to hear your e-voice. I recall our time together (was it at Duke?) right after your stroke. And those terrific Evangelism Conferences you put together. I don't travel much these days, but I'll take a look.Rick
>Rick,Thank you for writing this. It may take you a longer time or more effort but you certainly "say it like it is."Your essay captures so much about the TBI experience that I would like to share it with others.Could I list your link to this as part of the "Recommended Resources" that I handout when presenting on TBI?You inspired me to create a new section in "R R" handout: one where the audience could "catch" a sense of the TBI experience.Thank you,Tom
>Thanks, Tom. Of course you may share it.
>Rick,I cannot thank you enough for sharing these incredible thoughts and musings! Last evening, your wife told me about this blog and I am so moved by what you have said. It gives me hope and helps to put my own life in a better perspective. Again…..thank you!Blessings,Helen