The Holy Spirit or, In Praise of Kathy Hult

In the past few months, I have explored spirituality in a way that admittedly pulled its spiritual punches. I have talked about the human spirit, the spirit of courage, the spirituality that exists in a beautiful day. I have explored the spirituality of ALS, and I have explored the lack of spirituality in a culture that seems to believe in its own immortality. I guess part of the reason for my more descriptive narrative is that I have lived among so many different religious traditions in my life, and to proclaim THE way seems mostly counterproductive. After all, who am I to argue the relative virtues of the eight-fold path versus the way of Islam versus wrestling with God versus walking the extra mile versus the double-blind placebo controlled study of High Science? I have witnessed the subtleties and exaggerations, vices and virtues of all these approaches, and I can honestly say that if I don’t get too hung up on the nuances of language, it is possible to see holy spirit working in each of them—no matter what the frame of reference. What I have been circling around is the fact that dis ease is a holy endeavor, and if you cannot perceive the spirit that walks in a chemo drip or a slow loss of muscular function, then you are missing the great companionship that walks along beside you.

Next week in Minneapolis is the Walk to Defeat ALS, and I am sorry to say that with all of the things going on in our lives, I haven’t put a team together to support it. I have always liked to do things like the Walk—just a little over a year ago I rode the MS 150. I love the symbolism of walking to support the cause, since so many of us PALS cannot get around without some assistance. I love the fact that it will raise money for both research and support. What I really love about events like this though is the spirit that walks along with the participants. I remember last year on the MS 150, there was a point where Jon and Kirsten and Katie and I were just grooving in an 18-19 mph train that, each time it started to falter, another of us would move to the front and take the lead. Truly, the road rose to meet us, and the wind was at our backs. If this isn’t holy, then I don’t know what is. In the backs of our minds were the people that we were riding for—people with MS that we knew. So I feel a little guilty not putting together a group for the Walk. And of course the MS Society is a big group with a lot of resources and public face. The Walk does not get a lot of publicity, no local television stations have picked it up, there isn’t a celebrity that will be at the starting line, well unless you count the exceptional Kathy Hult.

You are probably wondering who Kathy is, and I have to admit that I didn’t have a clue about her until I started researching the Walk to Defeat ALS. You see, Kathy Hult is a PALS, and she was instrumental in the founding of the Minneapolis Walk. In the last eleven years, her efforts have raised over four million dollars for the ALS Association. When she started, she walked with a cane and though her dis ease progression is slower than most, she is now in a power wheelchair with a dog helper. Not only has she worked for ALS, she has also worked for the group that helped her to get a dog companion–Helping Paws. She was just honored locally as one of “Eleven Who Care,” and no one deserves the honor more. Here is a woman that, no matter what you believe, shows a spirit that is truly caring.

It is so tempting to write the “when life gives you lemons, make lemonade” line at this point. Kathy Hult is doing what I think all of us hope that we would do in the face of overwhelming difficulty, and she certainly personifies the lemonade of humanity. I love people like her. Inspirational, strong, down to earth, Kathy Hult has worked with a spirit that many would call holy. She has made the best of a bad situation, and I really admire her for it.

At the same time, I cannot help but think about the things that no television special will ever relate. For Kathy to get ready to go out, for her to get dressed and ready for the day, takes enormous effort. I know this from personal experience. Just the act of trying to get legs through pants and socks on feet, just brushing your teeth and washing your hair, requires enormous energy and time to rest from the effort. And this is the thing that I think is important for us to remember. It is easy to put people on a pedestal when they show us the kind of courage that Kathy Hult shows. But make no mistake about it, the courage is not in organizing the Walk, it is in getting out among people even though you know what it is going to take, just to look a little less like dis ease is your constant companion. It is the willpower that she shows by getting up and engaging in activities that will help other people. This is no lemons to lemonade story. It is praise for hard work, perseverance and gumption. It is praise for a spirit that you are either open to, or you shut out. In the ALS world, a walk with the holy spirit is about all you get, and you can choose to walk with her, or you can stay inside. Kathy has chosen to step out with the spirit at her side, and courage in her gut.

Ben Harper, one of my favorite preachers, sings, “When my legs no longer carry, and the warm wind chills my bones, I will reach for Mother Mary, and I shall not walk alone.” And here is the point. There is no place in time when we are ever really alone. It may feel like it. It may feel like we are walking in utter isolation. But if you just listen to melodies on the breeze, get in a bike train, gaze into the eyes of your own true love or wrestle with God, you are with a spirit that knows no boundaries except those that you impose. There is spirit in the cancer, and spirit in the cure. There is a holiness that, if we are just a little open, we can smell, taste and see. This is the point that I should have been making. It is in people like Kathy Hult, and it is in you, no matter the chill of the autumn wind. None of us need walk alone.

September 11th

All of us remember where we were ten years ago today. I promise this writing will not be a maudlin remembrance. For that, you can go to any of the major networks or the National Football League. I cannot help but reflect though on the parallels of the collective experiences of September 11th and the personal experience of dis ease. For Americans, September 11th is a defining moment, a then and now moment, a marked memory of marked memories. In many ways it is our dis ease moment as a country. It brought out great acts of bravery and kindness in us, and it has also been used to excuse the inexcusable. Likewise, for me, dis ease has brought out my best and my worst, some for which there is no logical explanation. I hope this observation doesn’t make you feel defensive or angry. I claim it as my own, and I’m not looking for agreement or disagreement. I just find the parallels uncanny, and I hope that sharing them will be informative.

The diagnosis that names our onset of dis ease is not a singular moment. It is an event that serves as the culminating realization of a gnawing feeling, a suspicion, a sense-making of disparate information to sudden dawning discernment. September 11th was our diagnosis. Like a big, floppy adolescent, we were out in the world, thinking that nothing could ever be so wrong, that we would experience anything so traumatic. Whatever uneasiness we felt, would not stop us from living in blessed ignorance of what was in our future. Never would we believe that such a thing as September 11th would become our collective dis ease diagnosis. But that is what September 11th is. And since that time, the dis ease of September 11th has invited itself into our lives, much like the realization of a cancer, shadowing our thoughtful moments and our unconscious fears. It doesn’t mean we cannot be happy, nor does it mean that we are always overcome by its presence. It is just a feeling in our lives, a fear that the child of an acquaintance, or a friend, or a person so close that they breathe the same air of our spirit, will be hurt or killed in light of the so-called “events that are a result of 9/11.” That is dis ease at its most insidious.

I think that deep down inside of us, we know that dis ease brings out a real dichotomy of humanness. I am not proud of some of the things I have dreamed, said, thought, voiced only to walls, or perhaps in moments of incredible smallness, inflicted upon those I love. Dis ease brings fear, and fear brings fights and flights. The temptation to lash out, to take easy answers, to point at difference and run from it as a way of negotiating dis ease, is unbelievably present. Every once in a while, I joke with a lawyer friend of mine that I want to know who I can sue. We laugh, but the fact is that my anger and grief make me believe in some small part of me that “Somebody ought to pay, by God!” And I don’t mean to say that some of that isn’t appropriate. It is appropriate to be angry and hurt, and to wish to remove the threat to your wholeness.

It is important to understand that the desire to fight or flee can make you do crazy things. You are vulnerable to all sorts of shysters and snake oil sellers. The fact is that having ALS means there are lots of people out there who want to “help” me, offering cures if I can just come up with the right amount of money, preying on the vulnerability that I feel. And our September 11th diagnosis has also been used for less than admirable ends. We have settled old scores, allowed beards and head coverings and names that sound “Arab” to frighten us. No question, the dis ease of September 11th makes each of us susceptible to fear, prejudice and shameful acts in the name of “security.” And all of us can point to someone that has used our collective vulnerability against us, manipulating our feelings of despair for their own gain. It is an out of context, Chris Isaac moment, “What a wicked game you play, to make me feel this way.” I am not proud of these moments, but I own as many of them as anyone else should or could, and it is far worse to deny them, cover them up, and pretend they don’t exist, than to acknowledge them. At least when you name your fears, you have a fighting chance to consciously decide their appropriateness.

But I said it is a dichotomy of humanness that dis ease inspires. I have seen so much good that directly resulted from September 11th, that there can be no doubt that many of the most beautiful moments that this country has collectively experienced are a result of our dis ease wounds. This has also been my own personal experience. I know that in spite of the weakness it has inflicted upon me, dis ease has made me stronger. I am a better man for it. I hug more, laugh more, care more, and even as I break down little by little, I count my blessings in ways that are hard to explain. I don’t quite know how to say this, but it is almost like dis ease has given me the gift of discernment that peels away the layers of false presentation, and brings every human being’s breathtaking energy and beautiful spirit into sharp focus. In the end, dis ease has given me the courage and determination to forego convenience. It has given me an urgency to connect with a world that I have come to understand as fleeting, so temporally framed that there are days its beauty and fragility overwhelm me. I will never forget the spontaneous gatherings in the days immediately following September 11th, the unspeakable grief that we shared, and the way that we reached out to each other in holy moments of collective comfort. It was like some vast balm rained down on our country, and the quiet of holding family members so close that it almost hurt was something that strengthens me to this day. We realized, for just a few moments, that we are only as good as our ability to build and support each other. This is the most important thing that I have learned from dis ease. My best self is the one that finds some way to help another person be better, in spite of my own challenges.

I recognize that this is a very small offering into the din of September 11th remembrance. The great gift I have been given with dis ease, is to know that life is a series of beautiful, joyful, exhilarating and overwhelming moments dis eased and otherwise. But I worry that with this new found consciousness, I might not come to realize the opportunities for good, until it is too late. Our nation struggles with this same phenomenon. Ten years later, it is as if we were suddenly cured, and we struggle with the amnesia that often accompanies temporary enlightenment. But enlightenment can bring change, and growth and the fortitude to not give in to fear, to remain attentive, and above all, to kiss this beautiful life square on the mouth. It tells us to embrace and never let go. Hug your true loves on this September day. Let go of the din and listen for the true gift of our collective dis ease–that we can be build each other up again. That is the only way to manage the dis ease of a nation.

Now What?

September is a special time in the life of a school teacher. The short summer has faded into the month of preparation that it takes to come back with new ideas, new approaches, reflections on what worked last year, and predictions about what might work this year. Even though I haven’t been in K-12 education for 15 years, I still get these feelings of anticipation. Part of it is living with a very skilled teacher, part is seeking to support teachers through my own work, and part of it is just my DNA–I grew up with teachers who grew up with teachers. But it is a bit weird, the anticipation of school starting juxtaposed with last week’s soft landing from 13,000 feet. And it raises the question of “Now what?,” as it is back to the day to day of dis ease management, and living the narrative of our current place.

I am sure that everyone has experienced the feeling of a massive emotional high, only to have to come back down to earth and do things like wash the dishes and take out the garbage. This is what I have been feeling in the past week, coming off of the high of facing my own low, and then skydiving my way past that fear. Often, coming down after a mountaintop experience has been a crash-landing, but unlike other times, for some reason, there was no crash after this fall. Instead, there was the subtle touchdown, pretty similar to the way I finally came back to earth from my skydive–a swoop, a turn, speed and then a little lift before the final landing. And it is back to dis ease management with the ultimate goal of trying to be a good husband and father, an effective dean, and an engaged person–applying the lessons of the past weeks to the challenges of the present days.

So I don’t feel particularly profound. Rather, I find myself trying to get my head around this seeming dichotomy of beginning and ending. I love the beginnings of the new school year, the anticipation, the belief that anything can go right, and it will. It is one of the real joys of being a teacher, to lick anticipation like it is ice cream, getting to all of it before it can melt away. And yet I also know that I am looking endings square in the face. It was a cool night last night. We put the comforter on the bed, and it is too heavy for me to kick off with my left leg. Does this mean I just lost a point? I don’t like thinking about that, but the thought comes unbidden anyway. No profundity, just reality, if you get my meaning.

One of the things that we have been living with for the past nine months is the need to sell our house. Selling a house is no fun. You are expected to keep the house balanced between comfortable lived in neutrality and immaculate cleanliness. And once you go up on the market, you are at the mercy of the hoped for occasional potential buyer for whom you are making the preparations. You never know if these visitors are curious or serious. If the sale of your house is absolutely essential for you to get on with the next chapter (say a job change or dis ease management) then you really feel the skin you’ve got in the game.

Your ability to move depends upon the ability to sell, and each and every time you vacate the house to the inspection of strangers, there is that irrational hope that this will be the family, the elusive buyers, the unknowns who carry your very fate in the chance that they will see their future in the space that you have made your own and now willingly or not, must give up. It is emotionally exhausting. On the one hand, it is just the envelope of shelter. On the other, it is the home where you made your life, the place where you experienced the love and loves of your kids, and the gathering spot for mourning the death of a parent. Your home is your space and place. The minute you decide to sell your house, you have to box up all of those feelings and associations, and you have to put them far out of reach. It feels like living in no man’s land, a demilitarized zone that is a lot like living with dis ease, because you never know when that next emotional bomb will be lobbed your way.

So we have boxed up the emotions and associations, although I admit that they leak out from time to time, and we are looking ahead to the next step. It is a so called “buyer’s market.” I love how this sounds, like it is easy. Just look at a few places, offer low since everyone will be just grateful for a buyer, close the deal and move. Sounds pretty good! But this is where dis ease has also pushed us around. We would normally research together, go look together, and then decide. Ev has been reconnoitering with our realtor all summer. I visit the promising properties only, conserving energy and feeling a little guilty for not being more help.

There are new variables which we have never even considered before–no stairs, an accessible bathroom, carpeting that isn’t plush, handles that can be leaned on rather than grasped and turned. It needs wide halls and doorways. And of course, with our anticipation of the care needs of a person advancing into ALS, we think about installing transport systems and wheelchair paths. Suddenly, it really isn’t a buyers market at all. Accessibility really makes your buyer’s market pretty inaccessible. I’m not complaining, just noticing.

All of this is to say that I don’t think I have ever experienced a beginning of the school year quite like this. It has complicated things–Ev is back at work, I’m useless after work–and the balance of living in the moment and anticipating the future is easily overwhelming. This is where I really have to kick in the lessons that ALS has taught me. Despair is not useful, but it is normal. When it comes, it does no one any good to deny it is there. It has to be acknowledged, analyzed and deconstructed. This is the time when we have to remind ourselves to take care of ourselves. Ev must exercise, take a yoga class, practice the piano. I must nap, get beaten by my computer at chess, or just sit quietly. In the process, we deconstruct the despair and reconstruct it into motivation and energy for the work that is ahead. I have come to the conclusion that despair is always a potential given when a problem appears unworkable. This realization argues for a different approach, a head adjustment more than a solution. The lesson of ALS is that if you cannot change your circumstance, then adjust your attitude. If I can get myself back to the place where I can analyze and break down the different components of the despair, then I can move past it.

We sold our house ten days ago (although I don’t believe that any house is actually sold until the closing is done and you walk out with a check for any equity you might have in the place). We offered on a place this past weekend only to discover that the association rules allow just one cat. I’m not willing to make a choice there, and so we will need clarification before we move forward. Yesterday, this felt overwhelming. We thought it was unworkable. Today, it feels like another papercut in a long line of papercuts. It just takes way too much energy to live in the fear of the future, even though we need shelter in less than five weeks.

I have an irrational belief that life hands you not so much what you can or cannot handle, but what you are meant to handle. That meaning comes by virtue of being in the place and time of your circumstance, and it neither makes you special, nor chosen. It is just the nature of living. There will always be situations that will test our human abilities to cope well beyond what it is we currently think we can do, and they overwhelm us, or we rise to meet them. ALS really underscores this reality. Dis ease management is predicated on this fact. And guess what, at some point, life, the world and everything else wins. That fact used to scare me. Now it comforts me in its certitude.

So it is a time of beginnings and endings. Anticipation has yet to be broken by the reality of too many kids in the midst of too many kids with very different needs and circumstances and ways of being than when I first came into education. And we are still here, managing the best we can, grateful for the ongoing love and support of friends and family, and actually grateful for the fact that ready or not, we are going to move on from this place to a new place where life will happen. It really isn’t the question, “Now what?” at all. School starts tomorrow. Each day is our next beginning, our “what,” and it is “now” that requires our attention and energy.

And I’m anticipating the next skydive that I bought this week. Happy landings all you teachers, you caregivers and you unsung heroes who manage life into better places! I hope you will experience that swoop, turn, lift and soft touchdown of a great jump into the skies. Now what, in deed!