Streams of Consciousness

I am not really sure what the point of writing is today. If you will allow it, a little stream of consciousness would probably be good for me. If not, shut this off now, and read no further. I am coming off of a week that would have left me tired in my old normal able-bodied state. It involved travelling by plane to Phoenix, an adventure for anyone in the dis ease category, even more for one who must have a wheelchair all the way to the plane seat. I arrived home late and put some finishing touches on materials for Saturday’s doctoral course, taught most of the day on Saturday, and then sprang forward like the rest of Minnesota to lose an hour of sleep. So I am just whacked today. On days like this, I like to listen to music, or maybe just look out the window, contemplating the mysteries of life and love and doing the best that I can with what I have left. These are also the days of vulnerability, of being so tired that my impairments are more pronounced, more obvious, more up front. And of course, in this state, I am easily touched by beauty and heartbreak, emotions well up without any apparent provocation, and random touch can cause me such sensory overload that my muscles—or what is left of them—seize up with cramps of involuntary fasciculation. Weird huh? But one of the gifts of dis ease is fatigue’s filter.

There is a perverse beauty to these gifts. The heightened awareness of physical vulnerability is almost sensuous in its presence. And the fatigue can be like a convex mirror, bending and shaping the images it presents into new realizations. I wouldn’t say that I actually like the feelings that are inspired by such tiredness, but it reminds me a great deal of descriptions I have read of vision-quests. The damnedest things suddenly become very clear—past pain, human frailty, regrets, joys, and visions, such visions of color and sound and wholeness beyond physical limitation. It is altered consciousness at its most primal. No drugs needed, alcohol not within a sniff, only the purity of fatigue washing over my senses.

Would I have paid so much attention to physical dis ease in the world had I not been the recipient of the gifts of ALS? If I am honest, I have to admit that the arrogance of my own able bodied existence allowed me to believe that I was in complete control of my fate. If I am honest, I would have to admit that I imagined disability like I imagined being an astronaut—it was a theoretical construct, an unreality completely out of reach, and if disability came, it would be a swift end to an active lifestyle. And of course, being a good white liberal, I truly thought that I could properly demonstrate care about the implications of dis ease, whether they were social in terms of sensitivity to the barriers that come with its disabling forms, or personal in acknowledging the needs of brothers and sisters just trying to make a go of a life well lived.

I had no idea.

Here is what I know. The physical decline of our bodies is inevitable. We can do only so much to ensure that our bodies will work as well as they can, but our bodies will break down eventually. Dis ease hastens the break down, and it pushes us to find ways to cope with its immediate challenges as well as its ultimate destination. And for me, the way this goes is entirely dependent upon whether or not I can come up with a sweet spot on which I can focus, a point of solace or strength or inspiration or just a place where I can crash the bad stuff into the good. I don’t know if you have this focal point. For me, it is almost always an image of Ev or my sons. It used to be that I would think back to the feel of the sun on long bike rides, but I can barely remember that feeling now.

Better to think on my beloved.

What makes the dis ease journey so challenging is that lives don’t come with technical manuals. Countless humans have tried to write guides for the life well lived, but most of these are as clumsy and well-meaning as one would expect from the lack of surety we all experience about well lived lives. Some are written by shysters and buffoons, others by incredibly caring people. Most of them are not technically meaningful, even when they are well meaning. And in a way, I guess that writing a manual for life is what this blog might be about. But here is the caution. It is a manual for an artist, when the requirements might be more toward engineering. God knows that if I could fix the electrical system, I would do it, but the technical fixes are not available. So it reminds me of the line in Zen and the Art of Motorcycle Maintenance–“Assembly of Japanese bicycle require[s] great peace of mind.” With no engineering miracle in sight, peace of mind has become more and more important to me. Having a dis ease such as ALS focuses things away from the engineering and into the metaphysics pretty quickly.

Oh I know, I am playing the engineer game. I’m in a drug trial, I troll the internet looking for the latest research. I participate willingly in clinical activities, and I am constantly on the lookout for technology that will help me conserve energy and stay reasonably engaged with friends and family. But in the end, it is the artistry of living, the peace of mind, the right attitude that really determines how things are going for me. And that is why I think the recovery days are so important. When I was young and able-bodied, I just didn’t see the need for reflection. As I grew older, I recognized reflective needs, but was so caught up in all the stuff I was doing, that I still couldn’t make the time. Now, the time is not a choice. The fatigue of dis ease insistently forces me to build in the time for my head and my heart and my soul, because ultimately, the engineering problems will not be solved. ALS, unlike so many other manifestations of dis ease, will not get better.

So I am in this space of fatigue and emotion and visions from mountains that I’ve never visited before, craving the engineering fixes that are not available, and completely given over to a day of reflection and recovery, as much as recovery is available. If I were rewriting the manual of my life, I’d have built this time in long ago. To build a life facing dis ease, one needs peace of mind, and that is a great place to begin. There is engineering, and there is artistry, and there is vision.

At least if I am not too tired to recognize it.


5 thoughts on “Streams of Consciousness

  1. Here is wishing that tomorrow is another better day. I recall hearing a speaker telling us her reasons for creating the African Women Development foundation that would value the input of grantees, fund to their expressed needs and spur in them the practice of leadership. Her main ingredients: anger an choice. She applied for a grant to provide African women leadership training and funder in the denial letter stated that African women did not need leadership training. She was so angry that she decided that from then on, she would build a fund source, so women would have choices over their own destinies.

    I hope you will be energized by the anger at the dis ease and choose to stay at peace.


  2. I just read this again for the third time. The first time, I focused on profound fatigue. The second reading, I wondered where my own arrogance lies and what I would know about myself if I suddenly had less time to know it. This last reading, I was reminded that peace of mind is essential to my health, mind, body, spirit, and soul. Sometimes I become aware of shallow breathing, breath holding, or muscle tightness, lately in my facial muscles, almost as though I am grimacing away pain I try not to feel. Then, you come along and remind me of comtemplation and peace of mind. Well, today I hear you. A spiritual friend is one who is honest with me, so honest that his words break through any denial or illusions and help me be in this precious moment.
    Serenity now, Jayne

  3. Hi Bruce– I wanted to reply to your deeply reflective post above in a few different ways.

    First, you wrote about the “gifts” of ALS, which in itself is an amazing concept for you to be able to embrace. In addition to the gifts you discuss, I also want you to know that another of the “gifts” of your dis ease is that it has helped your friends live their lives in ways you might not appreciate. I’ve told you before, and I truly meant it — that I think about you and your journey every day. Every day I appreciate the things I can do — which I know are now a struggle for you. I look at what I thought were very basic functions– like getting around– and recognize that I must not take those pleasures for granted.

    Another of your gifts to your friends is the beauty and wisdom you are willing to distill from this experience and share– in spite of everything. The way you are living your life is a genuine gift to those of us around you. Just like it has always been– only different.

    I’m sure you are familiar with Thich Nhat Hanh– this is a poem of his that I thought you might enjoy. I got it from Connor’s girlfriend who is going to school where they meditate every day– she got this the first day of class in her new life in Colorado:


    The first fruition of the practice
    is the attainment of froglessness.

    When a frog is put on the center of a plate,
    she will jump out of the plate
    after just a few seconds.

    If you put the frog back again
    on the center of the plate
    she will again jump out.

    You have so many plans.
    There is something you want to become.
    Therefore you always want to make a leap,
    a leap forward.

    It is difficult
    To keep the frog still
    on the center of the plate.

    You and I
    both have Buddha Nature in us.
    This is encouraging,
    but you and I
    both have Frog Nature in us.
    That is why
    the first attainment of the practice–
    froglessness is its name.

    By Thich Nhat Hanh

    I struggle to achieve any type of froglessness, but this poem and your reflections remind me that staying still and just perceiving without any reference to myself, is also an important part of living.

    All my love to you Bruce, every day all day.

    • I get this, and yet, there is always the temptation to try to plan around it all. Thanks so much Cindy. I love the poetry of Thich Nhat Hanh, and I love the poetry of your thinking.

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