The Take

My upbringing is particularly Judeo-Christian, so of course I have been taught that is it always better to give than to take. Couple my childhood with the American values of self-reliance and individualism, with plenty of room for my typical male socialization, and you can get a sense of how ALS wrecks what I’ve so carefully bought into from the time I was just a child. I deliberately am using the word take, because it is an active verb. To receive is passive, but I find myself having to deconstruct the old mores in a way that actively seeks out help and support. I’m not just a passive vessel receiving help. Ev and I have come to realize that taking help is vital to our living. And there is good and bad that goes with the taking: There is grace, but getting to grace in the taking requires a certain reconceptualization of the old lessons about giving.

This past weekend, Ev and I have been given the grace of taking. We have to move. I just cannot negotiate 18 stairs to the bedroom and a bathtub that is not walk-in anymore. It is stupid to even try. So, as we are getting the house ready to sell, we are moving into the apartment in the basement, taking us from a big two-story house with three bedrooms to a single level with about 750 square feet. I cannot tell you how much energy I save with this arrangement. But it is a complicated decision, and it means breaking through a lot of denial and grief about loss of physical energy and function. And it means that we need help, because there is no way to pack up the stuff of our lives that needs to be gone, or to move the things from down to up and up to down, by ourselves.

This is where I realize that ease has been interrupted with dis ease. We didn’t come to this place with ease. In our minds, we were going to live in this old house and entertain grandchildren with hide and seek in the stairwells, and fun in the yard. Such ease has to be given over to the realization that dis ease is now upon us. That is the hard part of the taking. And we hold a clarity about these realizations that leaves us raw and on the surface. When old friends showed up to help us pack, I cried. Couldn’t help it. But in these friendships, was the first grace—they knew how hard this was. And in this writing, I am calling them out by name.

A week ago, Laurie, Sophie, and Sharon got us well started with getting the kitchen into boxes. Over the weekend seventeen people came by and packed, carried, deconstructed, reconstructed, and loaded us into our next step in life. Our brother Greg organized the POD, Cecilia and Camille, and Cindy pulled stuff out of closets and cabinets and boxed or organized. Jonathan, Bryan, David, Don broke down and carried out. Teri and Steve—our almost in-laws–packed and boosted us up. One or two would need to leave, only to find one or two showing up. Just as we were thinking, “Well, we’ll have a lot to do tomorrow,” in popped Kristen, Rhonda, and Kelsey to continue packing. Sunday, Don and Ken, Greg and Cindy, and the wonderful Caroline and her boys helped finish it up, so that we are now safely ensconced on one level, and I feel like I am in a safer place.

Usually, I start out these little life lessons with the down-side, and then I finish with the up. This is a little different. It took the gifts of grace, from friends in our house, to point out that the path of ALS strips away what I thought I valued. It isn’t that I cannot or should not still strive to give, but the gifts of friends and family, who would take their busy weekend and offer to help us do what dis ease dictates we cannot do for ourselves, points out that giving and receiving is a false duality. Just as one who knows hunger knows food in a different way, I am getting to know giving by the necessity of taking. The take for me out of all of this, is that we couldn’t come to this place without the necessity that growing disability brings.

I am physically unable to ride this out by myself anymore. Dis ease is like that. It changes what worked for you before, deconstructing the old normal of John Wayne in the saddle—the guy cleaning out the gutters, organizing the major events of our lives, and yes—packing us up for a move. You really have to learn how to take with dis ease, seeking the grace in taking that nobody really mentioned when I was growing up. It is just the physical reality of dis ease.

And I have to say, the giving of others inspires me to follow dis ease’s path wherever it will go…. no matter what it takes.

Yours in ALS,


The Fixer

I am a guy, so most of you will recognize that when someone talks to me about something bothersome, my first reaction is to fulfill the male role and try to fix it. Mostly harmless but admittedly irritating, whether it is the toilet running or the kids ruminating, deep in my psyche is the need to fix things. Poor Ev when she comes home with a challenging day at school. All she wants is a sympathetic ear, and instead she gets this guy that has solutions for everything. I actually have an archetypal name for him (definitely a him) –The Fixer. Over time, I’ve learned to hold The Fixer in check—keep your words small and your ears big—but there are still times when The Fixer just can’t help himself. I’ve just got to fix things. Most of the men friends that I have tell me they get this, that a lot of them are fixers too, and so I like to think that my fixit self is come by honestly as a well-socialized (although sensitive) guy who came of age in the late 20th Century.

You probably think you know where this is going. That as a Person with ALS, I suddenly have discovered that there is something I cannot fix, and that I am learning great lessons in humility from that. After all, ALS with its no-cure, high mortality, just try to stay ahead of the symptoms future would be the ultimate Worldwide Wrestling Federation Smackdown, with The Fixer really getting his from ALS. I can hear the announcer calling the match. “Arrogant Fixer, you have met your match! You’re goin’ down, Fixer!” And you would be about half right in your perception of the discovery, but it isn’t quite that simple. See, I have good days and bad days with this guy.

On my good days, I am able to hold Mr. TF in check just as you would imagine. But I also have bad days, and in terms of learning great lessons about the limits of fixing, these come much harder. Just as dis ease is changing my body, it also changes the familiar archetypes. The Fixer seems a lot less like a harmless guy thing on those days. No longer is he that kind of lovable pup who just needs “the look” from my significant other to put him away and get real. The Fixer now manifests himself in ways that are less recognizable and a lot darker. He appears shrouded in his new identity through my medical treatments, my friendships, and my family. He lurks in my psyche. Rather than disabusing me of this archetype, ALS has actually created a new Fixer persona that emerges at some of the most inappropriate times. Here is an illustration.

Tuesday night, I finally faced the fact that I would be traveling to warmer climes the next morning, and I needed to pack. I have been putting off going through my summer clothes for at least a week. Why? It is nothing that any woman who is going through a pregnancy wouldn’t understand–a changing body.  The doctors want you to up your calories with ALS (weight loss is a bad thing). Dutifully, I’ve followed their diet so that I now count 7 to 10 extra pounds. Couple that fact with the unknitting of motor neurons from my abs, and clothing that used to be reflective of my svelte, bike-commuting summertime self, is now ludicrously small, particularly around a belly that gravity and muscle weakness seems intent on using to remove any pride in appearance that I might have carried. For a person who was in excellent shape, this is a hard pill to swallow. And at 11:00 Tuesday night, in reaction to this new normal in physique, one that I have been so carefully fixing with the larger pants and shirts of winter, the real identity of the New Fixer was revealed. No grace for me. I walked like a babe in the woods right into the ultimate consequence of the new and improved Mr. TF with a real meltdown that poor Ev and the cats, who were very excited by all of this activity with clothing, got to try to fix, each in their own way. Smackdown! Except the fix was in, and I lost.

My meltdown revealed that The Fixer has a new cloak–not of the experienced guy who likes to put his head around both intractable and simple problems. Not of someone who reacts to seemingly tiny losses with grace and dignity. Not even of someone who knows to just shut up and listen. That Fixer has gone into hiding. My new Fixer now appears as the denier, the rationalizer, the avoider, the one who just wants the hurt to go away. Whereas my old Fixer was probably my best of intents, my new Fixer is insidious. And if I embrace my new Fixer, then it really isn’t The Fixer that gets smacked down at all. It is me.

I admit that discussing The Fixer is just a little embarrassing, kind of like the stories your parents tell about you when you were thirteen. But it has to be surfaced–The Fixer is my need for things to be “old normal.”  And I project this need on doctors, friends, our cats, our kids, and most of all my heart and soul mate, unfairly asking if you all can “just fix it.” Rationally, as I come to terms with the new Fixer, it helps me to acknowledge this shift in role. Emotionally, well there has to be the occasional meltdown–that guy just has to come out from time to time.

I guess it is important for me to know that you understand my new Fixer archetype. He is beyond my guy self. He is beyond the dis ease. He just is, and I don’t want you to do anything about him. I’m not saying that I don’t want to try to anticipate what is to come and make it go as well as it will. But revealing The Fixer’s new guise means that all of us, as we are affected by dis ease, need to find the holy balance between the fixable and the inevitable. Such balance allows me, as I kind of bumble my way through this new normal, to focus on the joys I experience, Buddha belly and all, and to not worry so much about whether I actually got it fixed.

And what about The Fixer? Deep inside, we all know the answer to this one. The fixing will come actually, no matter what we do. Life has a way of fixing things in the way that they will go. So I intend to honor that fact with the love and joy of family, friends, cats and life. These really don’t need fixing at all. They just need room to grow into the new normal of dis ease.

In the meantime, I need to gather up my clothes and get to the tailor. It is what guys who fix things would do. Smackdown!

The Gift

My friend Kerry gave me a gift this week–Jessye Norman (what a voice) singing sacred music. He made sure that I knew that Track 10, “Great Day,” was a spiritual that his high school choir could rock out on. Lest you think Kerry is some raving religious guy who thinks I need spirituals to listen to, then let me remove that perception. He is one of those people who doesn’t seem to have a lot of need for churches and religion, probably a so called “secular humanist,” whatever that means–but he is a deeply spiritual man. And the gift—Jessye Norman—was a thoughtful gift, a gift to my spirit, something that lifted me and caused me to think about the gifts of dis ease. Those come in bundles—bundles of clarity, urgency and Joy/Grief. I know there are others, but these are the ones that speak to my spirit today, and because of my friend’s gift of Jessye Norman, I want to blog about the gifts of ALS.

There is a clarity that goes with a diagnosis of ALS—clarity of thought, purpose, feeling, joy and yes of course, grief. Most of us can imagine how a pronouncement like “you have ALS” would affect us. What is harder to imagine is the sensual experience of such a thing. My ears constantly sing to me, my eyes see through walls, I taste sunrises, feel colors. The clarity of love is so intense, I almost have to check it like it is an energy surge. And I’m not talking about the symptom of extreme emotion (a symptom of many with ALS). While I admit that my emotions run stronger now, it is the blurring of the lines between my senses that offers such incredible clarity. I KNOW what is important now. I know that every experience has multiple layers, each to be felt and analyzed and kept. The auto-pilot of living from event to event is completely gone. Pay attention! pay attention…. If I swim, it is like it might be my last time. If I eat, it is as if it was my last meal. To love, live, breathe, sense, and experience the tiny moments of this life has taken on a meaning I can only relate, but not adequately explain.  But it is clear to me.

And then there is the urgency. Many of you have heard me liken ALS to death by a thousand papercuts. I try not to dwell on this aspect — the progressive weakening of my body, but I know it is there. This causes a sense of urgency for this life with these capabilities, in preparation for the next life which is less physically able. It isn’t enough to work. It isn’t enough to love my family. It isn’t enough to connect with friends. It needs to be done with passion, abandon, love and light. There is no time to hold grudges, be afraid and not forgive. There is no time for games. There really are places to go, people to see and things to do, and time is wasting. There is a gift of joy and passion, love with abandon, friendships that aren’t afraid to say “I love you.” I just don’t have time for bullshit anymore (many of you who know me wonder if this is a change).  This urgency is not like when I was younger.  Then, I admit that I was insensitive, impatient and arrogant as only youth and inexperience can be. I know now that urgency is not abrupt.  It requires space.  There is no reason to be abrupt or hurtful, and there is no reason to be less than caring by naming truthfully what is in the room. That is the gift of urgency, and I am thankful for it.

Which leads me to the gift of what I have come to call “Joy/Grief.” Let me explain with an example from this weekend.  A long lost friend/teacher and I haven’t been in touch  for a number of years. He had been trying to arrange a time when we could talk by phone. I was supposed to call him on Friday, but I didn’t. I just couldn’t. It seemed so heartless to carry on the conversation along the lines of, “How’s things? Are you still doing (fill in the blank)…?” “Oh not much. Diagnosed with ALS.” So I wrote him yesterday morning and asked his forgiveness for not calling, and gently gave him my new framework. By yesterday afternoon, I had received the most unbelievable note from him. In his email, he talked right up front about being devastated.  But then something funny happened in his note.  He remembered my early years as a music teacher, and specifically my bringing my Franklin kids to perform Dido and Aeneas at Ball State University. He reminded me that when we got to the chorus, “With drooping wings, ye spirits come, and scatter roses on her tomb,” at the end of the opera, he had suggested I turn around and conduct the audience.  He had brought his madrigal group, who knew the piece, to hear our performance, and when I turned around, they sang with us.  He spoke of his devastation, and he remembered unbearable joy in music as 60 high school kids and 25 college kids joined voices on what is probably one of the saddest pieces ever written. What a joy to receive that memory, and what grief hung on every word that he wrote. This is what I mean by Joy/Grief. The two are inseparable, contradictory yet harmonious in this dis ease existence. Joy/Grief is a gift. It is a reconnection soul to soul, even as physical disconnection is taking place.

It may seem funny to speak of the gifts of dis ease. I know I would probably not have thought to think this way, even three months ago.   Kerry’s gift of Jessye Norman has reminded me that gifts come unlooked for. There are gifts of ALS, for which I am most thankful.  They have given me the clarity to know that this life is one that is passing, that if you pay attention to the inner gifts, there is amazing grace, and that friends can still surprise in wonderful ways.   Even as I feel my body breaking down, the clarity, urgency and Joy/Grief are too sweet to pass up. They make the hard parts easier, and they remind me that even if there was a world without ALS, there is a need to live the gift that life truly is.

Thanks for listening.  Yours in ALS,


The Automatic Papercut

I traded in my manual transmission. It was a great move for the environment, since I picked up a used Civic Hybrid. It wasn’t a huge monetary loss as I was able to trade my manual transmission Civic with a minor exchange of money. I even got a 2008 for a 2007 (albeit with more miles). All of these things are good. But if you know me, you know that there is a symbolism that goes with trading in my manual transmission. It is a T.S. Eliot whimper. It is another papercut. Why do I even care about this? Why does giving up the manual transmission even warrant commentary?

A manual transmission requires two hands and two feet. It requires ears that can hear the rev of the engine, and a sense of touch that feels the right gear. While it isn’t rocket science, a manual transmission requires engagement with the road that says, “put your feet on this ground and pay attention.” I love driving this way. I feel like I can maximize the capacity of the car. Undersized engine? Get the rpm’s up. Need to bring the speed down on ice? Downshift before braking. Listen to the engine, and feel the speed. Decide the appropriate gear (the more the merrier in my book). Engage your hands feet, ears and eyes, and notice the ride moment by moment. Driving a manual transmission is about the drive from the time you get into the car to the time you have arrived.

Automatic transmissions let you float above it all. They are mindless. You don’t need to pay attention to the sound and feel of driving, because the decisions are made for you. You get to take driving for granted with an automatic. Just shift into drive or reverse and go. One foot. One arm. Eyes on the road and feel free to drink that coffee, apply that makeup, go “hands free” with your cell phone. An automatic encourages you to drive without realizing what you are doing, no attention needed, and no real sense of the moment until you look up and you have arrived. You lose that time and space that got you to this place.

So, my inability to drive the manual is another papercut, earned without trying, on my Dis Ease journey. I just cannot make my left foot go down anymore with the authority necessary to disengage the gears, and I cannot bring it up with the finesse required to ease out the clutch so that my passengers don’t get jolted. The manual transmission is ease when done right. It is grace and it is a prop that forces attention. Now, I need to put my attention past the automatic, to find a way to stay engaged with the road, in spite of a vehicle that encourages me to just let it happen. Physically, it is one more papercut on this very short and human journey. But emotionally, it symbolizes a giving up that requires tremendous energy to overcome. All of us face this, we just don’t always pay attention.

This is a new attention. Time to get moving. I’m going to go out to my “new” Civic Hybrid, and put it into gear and let it take me where I will go. I’ll try not to shift it, even though my well trained left foot will want to. I’ll try not to pay attention to the rpm’s and wish I could nudge them up just a little. I will keep bringing my attention back to the road, remembering what the manual transmission has taught me. The road is as interesting as the destination, and every time I get on it, I might just learn something new, even in a vehicle that encourages disengagement. But I won’t put on makeup while driving!

Welcome to the Dis Ease Diary

Dearest Friends,

I am a PALS (a person with ALS), and I’m afraid to commit to blogging.  However, to try to keep up with communication with so many dear loved ones, both past and present, has become a challenge.  And…I REFUSE to go to a Caring-Bridge Site.  That can come a lot later, I hope.  When I switch over to that type of site, then you can take that as a signal that the end is near, either of Bruce or the world as you know it, HA!

So I’ve decided to try blogging.  It seems to me that it might be a good way for all of us to stay in touch and in many cases, to meet each other.  Some of you will know me from a musical past or present while others will know me from an international past.  Still others will know me from a present that is so grounded in Minneapolis, MN, the University of St. Thomas and 15 years of Stateside experiences that have become inexorably intertwined with one another.  Anyway, what I am hoping is that as you log into this blog and read (and hopefully leave a comment or two for me or others to see), you will also begin to meet each other.  My friends and family are incredible, raucous, messy and just wonderful human beings! It is really time for you all to meet.

What I am hoping is that this can become a dialogue.  I’ve called it the Dis Ease Diary.  While I think that my diagnosis of ALS really focuses me on how we do health, sickness, ease and dis ease in this country (and really, the Western world in general),  I also think it is bigger than just a commentary on health.  As we consider those things that seem at the time to be interruptions to our lives (dissing the ease so to speak), many will have nothing to do with ALS.  Instead, I see possibilities of this blog helping to connect some of the dots of what it might mean to be human in the early 21st Century.  Or we might just get in a few laughs and cries.

So take this in a lot of ways.  We can keep up with each other, we can talk about life, the Cubs or fashion, or maybe we can see if there is a little room for human consideration of being human.  If you don’t want to share your comment with the D E Diary, then feel free to email me.  The idea here is that, even as the motor neurons come unconnected, the love, life, light and joy of all of us, even in the darkest times, becomes unified.  And I admit this is very selfish, for I find that in the notes, letters, cards, and just chance meetings, since my diagnosis, I am strengthened and energized for the days ahead.  That is what love can do for us.

Yours in ALS,