Living in the Edges

This week, three seemingly unrelated events have really stuck with me. In a way, they have as much to do with each other as building a house and cottage cheese, if that makes any sense, but these three things—a funeral, a movie and a wheelchair breakdown—combined to bring a mindfulness that I think I needed to relearn.

One week ago today, Ev and I attended the funeral of a dear friend. She had 84 years of good life, and the funeral was a celebration of a warm soul with an infectious laugh and a sunny smile. I am sure that was not the whole story of her life. I know that she faced tragedies—a son and a husband taken before their time, a fear that she was losing her judgment—yet, when I saw her on Christmas eve, her warmth and love was present, and I am sure she died in a way she would have scripted—chatting with a friend one minute and slipping away the next.

Two days later, Ev and I saw the movie, The Descendants with George Clooney. It is a movie that takes place within multiple frameworks—an old family needing to divest itself of its land, a larger than life wife suffering a mortal boating accident and now on life support, a husband and his daughters with very little experience of each other and having to face their frayed family relationship. There are all kinds of layers to this film I could discuss but when one has dis ease, the layer that is hard to ignore is the hospital room with the woman on a ventilator. Believe me, that ventilator takes on a size that dwarfs everything else in the room when you have ALS.

You probably think it is obvious why seeing The Descendants and going to a funeral would take on added meaning for a person with dis ease. I thought so too, as it seemed so tangible, but I just couldn’t seem to write it. It took a third event, juxtaposed to the other two, to actually shake some sense into me.

The meds that I take have to be ingested on an empty stomach, and they require a one-hour waiting period before eating. My habit is to awaken at 5:00 AM, take my pills and then find my way to the bathroom in my power wheelchair. Thursday, I hit the power button on my wheelchair only to see a locked lock in the display window. Then it shut itself off. I had no idea what this meant, although I would bet my peeps in power wheelchairs have a knowing smile right now. As I was becoming quite uncomfortable, Ev went to get my walker. It isn’t more than 20 steps from the bed to the bathroom, but this is the furthest I have walked in two months. It wasn’t pretty.

Honestly, since Thanksgiving, I haven’t given much thought to the fact that the power wheelchair is my exclusive mode of travel. I had not thought about the fact that I do not walk anymore. And it felt good–aside from the clumsy gait, the dragging of my legs, and the fact that I felt I was walking on my elbows–it actually felt good to use the walker. But I don’t think I will do it again. Every step was a fall waiting to happen, and that fact combined with my sudden realization that I was really only quasi-walking, told me that I have made the transition to the wheelchair, with all that it means, without real examination. Suddenly, without warning, I faced a little spot of grief that had gone unacknowledged. Between downloading the technical manual for the chair and talking with the emergency technician at Reliable Medical Supply, I found out how to unlock my wheelchair. What became really obvious was that I had unlocked a sense of loss, to which I wasn’t even paying attention. Wheelchair–just fine, Bruce’s emotions–unlocked, and that opened realizations about funerals and movies.

I cannot go to funerals without thinking, even at the most peripheral level that ALS is like a filter on the soul. It is a cataract that blurs one’s perception of living so that mortality colors everything. Most of us would not welcome death even as a guest, in spite of its presence in so many of our cultural representations. There are lots of ways death gets portrayed. For the adolescent in us, death is violent, unforeseen, gory, laughably without consequence. For the romantic, death is little vignettes of totally unrealistic sweetness— eyes closing, last breaths sighed, uplift through the happiness of those left to go on—it gives the audience relief. Even the least thoughtful of us would say all this is pure Hollywood.

The Descendents defies Hollywood convention. Within the very real setting of a mother in a permanent vegetative state, is the slowly dawning reality of a family coming to grips with its own history. In this respect, the movie is remarkably realistic. For them, death brings reflection, self-examination, and retrospect. And this inspires rewrites of the stories and narratives that hold them together. In The Descendants, death inspires a form of negotiated memory, and it helps the family, both immediate and extended, move on with much more attention to the details that will just give them a shot at a good life together.

Forgive me if this seems morose, but this is my reality—living in the edges of dis ease. As the Sondheim song goes, “Every day a little death.” This is not necessarily a bad thing, but it requires full attention. I attend a funeral in celebration and mourning of a lost friend, but I also feel like I am on the outside looking in. There is this realization that funerals are for the living, and I am dying, and even though most of the outward and inward indicators point to the fact that we are all heading in the same direction, I end up paying a lot more attention to this stuff than I did before. I have to tell you that carrying such realization does not make you the life of the party.

And what really frightens me is the fact that even though loss is inexorable, I had gotten out of the habit of examining it. I can look back, even in the last month, and point to things that I did for the last time, without ever acknowledging it was for the last time. Nowhere did this become more apparent to me than with my locked up power chair. I truly depend on it for the simplest mobility. The death of a friend, a movie filmed on the set of a ventilator, all of these jarred my normal consciousness, telling me to attend continuously to these unique gifts, in spite of the fact that they represent a direction to which attention is not easy to turn.

You are probably wondering what the point is, or if there is anything new to be learned from this. I’m not sure, but I think it actually has to do with learning. The requirements of learning never stop. Each day, each “little death,” each paper cut, each new challenge requires new skills, new attention, new attitudes, until one day you are unable to handle it anymore. I guess that is the point for me. This past week jarred me into renewed consciousness, although I thought I was awake. It wasn’t pleasant, but it was the gift that makes my dis ease journey one that I know I can make.

Maybe I should see another movie, or at the very least, have a cup of cottage cheese.


3 thoughts on “Living in the Edges

  1. Oh, Bruce…you, who have been so generous as to share your journey with us, teaching us as you learn, do not have to teach us anything and today you have filled my eyes with tears you do not want! I ache for you, my friend, and admire and applaud your heart and your spirit, You are priceless.

  2. Hey Bruce, I am so filled with sorrow about the things you can no longer do. You put us all to shame when we complain about the things that bother us—things you would give anything to be bothered about. This morning in my quiet time I read something that made me think of you. So want to share it.

    “There is no music during a musical rest, but the rest is part of the making of the music. In the melody of our life, the music is separated here and there by rests. During those rests, we foolishly believe we have come to the end of the song. God sends us times of forced leisure by allowing sickness, disappointed plans and frustrated efforts. He brings a sudden pause in the choral hymn of our lives, and we lament that our voices must be silent. We grieve that our part is missing in the music that continually rises to the ear of our Creator. Yet how does a musician read the rest? He counts the break with unwavering precision and plays his next note with confidence, as if no pause were ever there. God does not write the music of our lives without a plan. Our part is to learn the tune and not be discouraged during the rests. They are not to be slurred over or omitted, nor used to destroy the melody or to change the key. If we will only look up, God Himself will count the time for us. With our eyes on Him, our next note will be full and clear. If we sorrowfully say to ourselves, ‘There is no music in a rest,’ let us not forget that the rest is part of the making of the music.”

    Bruce, you may be in a musical rest right now, but your song is far from over. Your “rest” is part of the making of the music that many of us are hearing—maybe for the first time. You have opened our ears to the melody of dis ease, and while the music may sometimes be sorrowful, it is always beautiful, and it touches our hearts more than we ever though possible.

    Love you, Barb

    (quote was from Streams in the Desert by L.B. Cowman)

  3. My wonderful friend, Bruce – Last week I had a severe case of vertigo along with the nausea and everything else. Was in bed for three days feeling sorry for myself. I still can’t drive a car but I got to thinking about you again and what you are going through and my troubles are nothing!!!
    Both Ted and I truly look forward to your blogs and your gosh-darn good attitude you have with ALS. I would be a basket case but you light up the screen with the words you write about your experiences. I have a special place in my heart for you, dear friend, and my heart can’t stop singing. Evelyne A.

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