It is inevitable, even natural for those of us with mortal illness, to think about our own funerals at some point in the dis ease cycle. Before you become overly alarmed that this week’s entry will degenerate into maudlin, whimpering memorial instructions, let me assure you that I will not be discussing any postmortem planning today. That isn’t to say that I haven’t thought about it, but you will just have to wait until I have crossed the great divide for such discovery. Instead, I bring up funerals because this week, I had an experience not unlike attending my own wake, my own funeral, causing me to consider how we do death, how we do life in this strange human forms we occupy.

There isn’t a culture or society that doesn’t in some way mark life’s passage through significant ceremony. What might look strange from outside the culture is perfectly normal inside. In high school, I remember reading about a society that dug up the bones of their ancestors every five years to take them out to restaurants, give them cigarettes and take care of those earthly pleasures the deceased might be missing in the afterlife. From my high school perspective, this seemed quite bizarre. But as I began to turn critical lenses on my own culture, my own background, my own society, I realized that this was no more strange than embalming the body of a great philosopher to sit watch in the school hall where he was headmaster, or of the practice of specially built rooms with red and blue lighting to ensure some faked lifelike quality to the mortal remains of the deceased, or the ossuaries in countless European monasteries and cathedrals with their piles of sorted bones from the men and women who served within.

While seemingly strange from an outsider’s point of view, many traditions surrounding death are based on practical need. Jeremy Bentham’s earthly remains aside, the ossuaries and funeral homes and entertainment of ancestral remains resolved cultural issues surrounding the dignified and ceremonial marking of the life and death of humans. And in our culture, the particular tradition found in the practice of the wake has specifically changed in form and function to accommodate both the practical and the sacred needs a postmodern death presents.

It isn’t known for certain when the practice of the wake was started, but most experts would agree that the term wake is from the practice of the family remaining awake with the body over an extended period of time to ensure that the departed was actually deceased. Many pre-20th century horror stories are based in the fear of being buried alive. Such an ending was considered to be so horrific that it inspired tales of the undead wreaking havoc on those who had propagated the horrible act in the first place. And it inspired the practice of sitting with the body and checking from time to time for signs of life to avoid such events. Family wakes morphed into the practice of the visitation when friends view the body of the deceased and greet the family as a sign of respect. The practice continues to evolve, so that remembrance and laughter sometimes encouraged by Irish whiskey and bawdy humor, are considered to be as appropriate as traditional tears and sadness and feelings of loss. It is a shame that we don’t get to attend these events held in our honor while we are alive, for the practice of sharing the deep feelings of love and gratitude for the life well lived is generally reserved for “roasts” of the rich and famous, or as is the case of the wake, for postmortem remembrance.

I cannot help but think that humans are impoverished by such practice.

One of the great gifts of ALS results from its speed of progression. ALS is not a gunshot severed, car accident, 100 days to live brain cancer; the sudden and heart wrenching black hole death that leaves lovers and loves alone in the endless caverns of their souls, pouring grief and remembrance and remorse and regrets for words and feelings unheard and unsaid in some vain attempt to mitigate the departure of their loved one. In each host body, ALS moves at its own speed–50 percent mortality after three years, 80 percent after five and 90 percent after ten. The greatest ALS gift I have experienced is the time afforded wakefulness, Irish whiskey notwithstanding, encouraging both formal and informal expressions of love before mortality, of declarations of meaning before death.

This past week, I was granted the privilege of love’s expression that is usually disavowed and kept separate by the professional environment. My friends and colleagues at St. Thomas offered up a time of remembrance and laughter and tears and joy, allowing us to say what was inexpressible when I left. An emotionally charged and highly meaningful event, it left me exhilarated and exhausted and highly reflective on the nature of life and love and the insistent teaching of dis ease. Indeed, my dis ease teacher asked, “What were you waiting for?”

I guess I was waiting for ALS.

It is so easy to withhold ourselves, for we are taught the benefits of remaining circumspect and less than forthcoming. When I write, I sometimes hold back things that I deem hurtful or embarrassing or that might make me too vulnerable to others, or them to me. Such prudence is a valuable skill to develop, especially in discharging leadership responsibilities where the inappropriate or premature disclosure of information can be harmful. But there is a price to such non-disclosure. We also lose the distinct, even sacred connections, human to human, that make for the spiritual life intertwined in the holiness of each other. If I extrapolate on the teachings of dis ease, the honest sharing of feelings is an opportunity often missed.

I cannot tell you how many times I hear from friends the following: “I read your blog, and I don’t know how you do it. I could never be so open but your openness helps me.” I am thankful for that sentiment, but it inspires in me the dis ease question, “Why not?” Dis ease strips away embarrassment and completes the lesson–we are meant to share this human existence in honesty and love, and our value is in the value we build in each other. To express our lives is an expression of love. To not express that love, to withhold it out of fear that others would think less of us, demeans our humanity, raising fundamental questions of being. What are you waiting for–to tell someone what they have meant to you, what they have done for you, how their presence and love and joys and sorrows and defeats and challenges and victories have fed your soul, nourished your life, taught you a humanness you couldn’t imagine any other way? What are you waiting for to say, “I love you.”

So, attending my own wake while still alive and present, with words and feelings and experiences shared before death’s loss made the event too late, was the circle completed, the human connection sanctified, the love expressed. And honestly, in spite of a few pictures that maybe revealed my lack of judgment about hairstyle in the eighties, it is the most sublime experience I could imagine. I am thankful and awed and blessed by my colleagues and students.

What was I waiting for?


7 thoughts on “(F)un(e)real

  1. Our neighbor, Alice, died a couple of weeks ago. It was quicker than we expected, though we knew her cancer had returned, and we didn’t find out until after the funeral. BUT, you’ve encouraged me in this last year, so I’d often told her I loved her, and I’m much freer to say it to others God has gifted me with. So thanks, again. Oh, and by the way, you know I love you, right? 🙂

    • Thank you for this article. What are we waiting for is right. The fear of talking about the inevitable seems to paralyze us. I’m not sure what to do about that. I worry that we remember the pre-diseased person while not enjoying the still living ALSer. I know I will look back and regret this, but still at a loss how to change gears. And while I sit, doing absolutely nothing, my son is out making a lifetime of memories in a short amount of time. Maybe it’s simple…I wish I could find this courage before I have to live with a lifetime of regret. I am glad you shared your story. I am thrilled your colleagues and students have the courage to celebrate you while you are around to feel and hear the love and blessings.

  2. My uncle who was a pastor and then a chaplain in the VA Medical system passed a number of years ago from mesothelioma. His children and my aunt had a celebration of life about six months before Jim left us. It was a wonderful occasion including many people who shared how my uncle had touched their lives, and the best thing yet was that he was able to be there and enjoy the recognition and love! I am happy that you had that opportunity as well!

  3. I am thankful to have been a part of last week’s celebration Bruce. Got love? You bet I do! Love and blessings to you and your family…holler my way if you would like a visit from me and some amigos…we can jam:)

    Jon Peterson

    Sent from Jon’s I-Phone

  4. Thank you, Bruce. There is so much more in those two words than I could convey with a thousand, and my words would be insufficient. So again, Thank you.

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