According to the Brain Injury Association of America 1.4 million people every year sustain a brain injury in the United States. Of that number 235,000 are hospitalized and 50,000 die from their injury. There are an estimated 3.17 million Americans that are living with life-long affects from a brain injury according to the Centers for Disease Control and Prevention. My dad happens to be one of the growing numbers of Americans who acquire a brain injury later in life. Several years ago, he was diagnosed with a brain tumor that developed in his cerebellum (the part of the brain that deals with movement.)
After being in the “disability field” for years the word disability, and its meaning continues to change for me. I can still define it in a academic sense but when “they” words (like disability may mean to most) rightfully and really turn into an inclusive word, it can be a bit like when one begins to feel mortal at some point: it should have been an obvious, comfortable fact all along. I guess some facts we have to grow into. We may be wired to live in the moment, but as disability is part of the human experience that many (if not most) will experience at some point the “they” part of the definition that separates is an illusion. This is my confession: I was immortal until a few years ago, but I doubt I’m the only one who has been slow to get it.
As disability is part of my own experience doesn’t mean I don’t still struggle with the parts that don’t feel right, or feel different in my relationship with my dad. It is always hard to watch someone you love go though something that is painful. Professionally, I see those with newly acquired disabilities almost every day try to “redefine’ what it means to be who they are. I watch how loved ones work to support those they love to heal from brain injuries and to be “strong” for them. All while being physically and emotionally exhausted. My own opinion is that being a part of the process of helping: as a son, as a case manager, or as a friend or to allow others to be a help us is part of a sacred cross-roads experience, after a serious injury. Even with all of the chaos going on during a crisis — ironically, it can be the place where we can for a brief moment “see” others clearly, and they can “see” us for who we are. It’s a hard confession to admit to others (or to oneself) that we are fragile human beings who need support and understanding from time to time. But realizing we need others is not a sign of weakness or that we are “giving u.” It is waking to our humanity that is found in interdependence, again another example of something that should be obvious, but maybe is not.
My dad searched to find meaning after no longer being able to keep his job as an engineer (of forty years.) There was nothing wrong in that struggle, we all find some of our purpose in the things we do at work, or play. Most want to get the gold watch and go into retirement on our own terms, to still be able to do all the things we have always have done, and do it the same way.
So that leads me to my last obvious point — there are no guarantees that some of our abilities won’t be recalibrated against our will, or that it can ever happen at a convenient time. My hunch is that what will matter most to us then, would be no different than this moment — if we paused, stood still, took a deep breath and asked the question: “What efforts should I make, and what time spent will matter most to those that love me?” The answer for me personally is to make memories, and to see those I am with now more clearly, to take some time to show love, and to call up my dad – even if it is just to ask how his day went. Disability, death, and even taxes can’t take away the investment we make in new memories. If my dad can’t remember them, I can. If I forget, my children will remember, or my wife and they will feel their affects like ripples of expanding immortal influence.
So maybe in that sense the things that matter most of our humanity are not mortal after all?
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