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.