Catching Up

I didn’t write last week. I was just wrung out. The kids got married two weeks ago, we held a nice reception for them with the family and friends that had come to the wedding—something that we need to take our friend Kathy out for champagne-brunch for the enormous help and support she gave (I don’t think any of us realized what she was in for). Jon’s new mother-in-law Teri made it through the ceremony and held court at the reception. After going home, she broke her pelvis—her bones were just riddled with cancer—and by Sunday, we were keeping vigil for this sweet, lovely woman. Teri died Tuesday morning, her wake was Thursday, and her funeral was Friday. By the time we got home from the funeral, I think both Ev and I were just ready to sit, to be, and to contemplate the strange juxtapositions of life. Our kids were remarkable through this whole time.

There are so few words that even come close to describing the ups and downs we experienced in the week after the wedding. I was so emotionally and physically exhausted that I spent most of day after the funeral just sitting, trying to regain some sense of the center that keeps me in place. And don’t get me wrong, I am not complaining. The week was holy in every sense of the word, one that breathed the indomitable spirit and energy of love’s highest heights and lowest depths into every waking and sleeping minute. It was the circle of life coming around on itself. Our beloved children married in an intimate, loving service. Our beloved mother Teri was lifted into the great eternity. We laughed, and celebrated, cried and mourned. The sun rose, and it set. Life as we knew it changed forever, and life remained achingly the same. It was overwhelmingly, beautifully, primal. I cried a lot, and I laughed as well. Of all the gifts of the week that we experienced, the most beautiful was to experience how these two families are now a part of each other, and I am really thankful for that.

This past week has also been full. We were at Mayo on Monday and Tuesday, an event that is always a little stressful. I find that I both look forward to and dread these quarterly checkups. I look forward to them for the opportunity to gain back some of the ground I’ve lost to dis ease’s inimitable progression. The ALS staff at Mayo is outstanding, extremely knowledgeable about ALS, at least in terms of what to expect, so they are good at predicting my upcoming physical needs. I appreciate their thoroughness and their collective wisdom as they reconstruct my life back into something that I can actually handle. I love how competent and professional they are with the very little that they get to work with. After all, there is no fix for what ails me, so everything we do in clinic is palliative. That has to be frustrating for someone who is trained to heal the sickness.

I also dread these checkups for old normal reasons. Whether they are meant to or not, these visits become dreaded markers on the road of the physical breakdown that I travel. They are like progressing through life at breakneck speed, only backwards. Getting dressed, and all the stuff one does in the bathroom is getting harder and harder, and it makes me wonder if we aren’t doing this part wrong in some way. I remember a comedian’s (was it George Carlin?) sketch in which he argued that we should do aging backwards. He made the case that life would be so much better if we began as infirm adults, progressed into middle age, gaining the same wisdom of age as if we were aging forward, but with bodies that continue to work better and better, until we retire at adolescence to look forward to childhood, infancy, and finally ending our existence as a “gleam in your daddy’s eye.” I have to admit, I like the suggestion. As I age more quickly than my 55 years, I note the physical loss, and the visits to Mayo only underscore this. There is a scale that they use to measure your function, and I continue to lose points on it. I hate losing, and I hate having my losses documented, because it means I am headed further down the path that I have tried so diligently to avoid this past year. On the other hand, it isn’t like I am not aware of the breakdown.

When you have ALS, one of the things they measure at the clinics is your breathing. Assessed through two basic measurements, breathing is one of those things that ALS caregivers try to keep on top of in marking the progress of the dis ease. They look at forced vital capacity, that is, how many liters of air you can exhale. They also like to get a sense of your blood oxygen level. And of course, one of the most significant decisions looming over a person with ALS is whether or not one will go on a ventilator (PALS just use the term “vent”) when breathing capacity is so diminished that proper oxygen levels are not maintained. Sorry for the clinical explanation, but I wanted you to understand the context that I carry in my head concerning breathing. And this context intensifies for me as a singer, in that my old normal image of breath was that it was something that could be controlled. Now it is something that marks breakdown. At this point, I breathe with the best of them, but the changes, however subtle, are very noticeable for me.

In my faith tradition, breath is a manifestation of holy spirit. In the past two weeks, we have held our breath in wonder as my son and new daughter-in-law married in a gorgeously intimate service. We have breathed in rhythm with the dying breath of an angelic presence taken from us too soon. I have breathed on my own with care toward the production of the best singing tone I could muster, and we have breathed in the presence of angels and spirits as they gathered in sorrowful joy wherever we were.

So it has been a very full, holy, and remarkable two weeks, and today was the last of it. Somehow or another, I found myself speaking to our church about our capital campaign on the same Sunday that our beloved choir sang Pergolesi’s Magnificat. I love that piece, and it was a privilege to speak on both our capital needs, and to help our congregation get the beauty of the magnificat text. It was a great service. Our choir, soloists, strings, and conductor presented this little gem of a work as a wonderful capstone for a lovely worship time. This place is very important to me, for it is a community that rallies around its own. Today was especially poignant, as we also remembered a beloved member who died on Friday. I am following too many people on Caring Bridge.

I have taken two naps today, and I’m ready for bed. I’m sorry that I don’t feel particularly profound, not even a little, but I wanted you to know that for our family, the last two weeks have been so human, so blessed, so sad, and so joyful. Life has taken many turns neither expected nor unexpected, and I know it will continue to do so. I still see deep meaning in the experience of dis ease, and I know that will be apparent with a little rest. But I think it is important to sometimes just reflect on what has happened, and take stock of all of the people that you love. It is in the catch up, that sometimes we can get ahead.

The Circle

It is almost too cliche to talk about the circle of life, but I can’t think of another symbol that better illustrates my feelings today. Chalk that up to my lack of creativity, but the fact is that one of the marvelous things about humans is that we tend to superimpose patterns on almost everything that we experience. The circle pattern is so useful! You can look at the seasons of the year, the hours of the day, the span of a lifetime, and so much more as a circle, better yet, a cycle. Today, this week, I see it in my own life. My beloved son Jon is getting married while just last Sunday, Ev and I celebrated thirty years of life together. The circle goes round and round. Life continues to its ultimate end, and then begins again.

For life’s meanings to fully emerge, death’s presence cannot be ignored. One of the ways we acknowledge death is to personify it. Usually we use some masculine image, probably because of the power death displays, but it doesn’t have to be that way. My personal favorite is the lady in white lace, seductively played by a young Jessica Lange in All That Jazz. She circles round the self-destructive main character until she finally reels him in. I guess this is another way that we humans try to understand what is happening to us. Death, dis ease, or other phenomena personified give them the necessary presence without having to explain them as abstract concepts. Life is real, and death is real. This week, my heart is full of the joy of anniversaries and weddings, and my heart breaks with the full presence of loss that accompanies our joys. Our beautiful friend at church has entered home hospice. Our son’s new mother-in-law gamely battles on with melanoma that will not quit. Cycles of death and rebirth, joy and sadness, anger and resignation–I told you we humans like to impose patterns on the events of our lives.

Today, out of our heartbreak is great joy. I am joyful that Jon and Kirsten were able to move up their wedding so that Teri could be with us. Teri is a remarkable woman. She is one of those people that when slugged by the big fist of life, picks herself up and kind of shakes her head, and then she says something like, “Well, if I can take that, I guess I can take the next thing.” Obviously, her family adores her, and obviously, her strength, as it wanes, takes some of the wind out of their sails. Her life, it turns out, is so intertwined with with this raucous crew, that as she continues to fight on, it feels like every blow is multiplied exponentially through her loved ones. I know, I said that today there is great joy.

But there is. Teri is a spirit that brings blessing and holy love to any room. To have her with us today, in spite of her dis ease and our unease with her dis ease, is the breath of God blowing kisses to these beloved children. To share her joy in the fact that these two young people have made a solemn vow to each other, and to know that she loves my Jon as much as I love her Kirsten, is a feeling that overwhelms my senses. There is joy in seeing her strength manifested in the daughter who has chosen her path with my son. There is joy in the twinkle in Kirsten’s eye, that reminds me so much of her mom. And I see circles, cycles, birth and death, love and rebirth, dis ease and wholeness. Without the one, there would not be the other. There is joy.

I feel a little funny writing about all of this. I don’t want to intrude on Teri’s privacy, but I want you to know about this incredible energy that she has fostered and let loose on the world in the person of my remarkable daughter-in-law. I want you to know how extraordinary it is to look at your adult children, knowing that bad things will befall them, and also knowing that already, they demonstrate the resilience they will need to make life work. I want you to know that Teri doesn’t complain, she is much more dignified than me, and that in spite of the fact that we all know that the next punch is probably the knockout blow, she keeps climbing back into the ring.

I’ll change the subject now. For today is my own joy, and my own dis ease moment. With a wedding moving faster than the speed of light, I was asked to sing and Ev to play. Jon and Kirsten had met with our good friend Peter, a pastor that has been in Jon’s life since he was a boy, even accompanying us in the last jump from a perfectly good plane. At 6:00 on Thursday, Pete called and said, “Can you bless us with a little hymnody?” Old normal Bruce would have been delighted to have said yes. Old normal Bruce would have stepped up to the moment with little or no fear. Old normal Bruce would have confidence in his ability to pull it off, in spite of the emotion of the day. But, I am new normal Bruce. I have ALS. My breathing, while still strong, is not supported. I get fasciculations (you can look this up–it is a great word) throughout my body, and if I breathe incorrectly, I get painful cramps through my abdominals. It is not an easy thing to intimately know the physical and intellectual requirements of bel canto singing, and to have ultimate awareness that you cannot meet those requirements anymore. But they asked, and I will sing.

I will sing for Jon and Kirsten. I will sing for their friends, our families, for the blessings of a sunny, warm November day, and for the circles that have entered our lives. If you have followed these ramblings over the course of the last nine months, you know that music is a spiritual experience for me. I see God in purity of tone, and I see God in the music of this earth-bound plane. There is music in the laughter of my loves, and there is music in the celestial spheres. Music well made is a blessing. Music poorly executed is an opportunity to continue the quest for the face of God.

This is where it all comes together I think. The most beautiful music of my life is in the family that I hold dear. For me, Ev is a song–sexy and bright, remarkably funny, delighting in the everyday blessings of her own life and able to bring those blessings home with joy and love. My sons are songs–hesitant at first to try these brand new instruments with which they have been blessed, but ultimately singing with voices that echo the best (and probably the worst) Ev and I could have ever composed. Today, Kirsten is a song–strong-willed and self-reflective, in your face smart and gently sensitive. She is her mother’s daughter, not to rule out her father’s influence, but the resemblance is too remarkable to go unnoticed. Today, Teri will bring her song although it is a struggle to be present, and she would have it no other way. I have heard her joke that music might not be her forte. She doesn’t know the blessing she will bring.

The cycle is coming around to its beginning again. I will sing, but it won’t be my song anymore–I could whisper these words and the music would shout in our ears. The line that I will have to hold myself together on is from Wendell Berry’s poem, “The Country of Marriage.” He writes, “You are the known way, leading always to the unknown, and you are the known place, to which the unknown is always leading me back.” We humans know life and death. They are both known and unknown ways. And they always lead us back to the known places. Death brings life, and life is not possible without death. Joy is more joyful, because between our joys are our utmost sorrows. Today, dis ease dictates that this might be the last time I sing this song, it might be the last song that Teri ever sings. But it will be the first song for Jon and Kirsten–a wedding song, a matrimony, a gentle walk down the aisle and into a commitment ’til death parts them. It is an Ecclesiastes moment, marked in the fabric of time from now on. See the circle? Dis ease is eased just a little bit.