A New Day at Limestone Ledge

I woke up at seven this morning, and of course the hospital staff was already going about its collective business, a little faster, a little noisier than than before seven. A couple of nurses came in and woke Lowell up a bit after the hour; time for him to be awake and thinking about breakfast.

I’m at my desk staring out over the busy street, six floors up. Commuters and early commercial vehicles are flashing past–for a long time when we were first up here I sat by the window watching to see how many cars had sunroofs or whatever they’re called no. The answer is: many. I’d say about 40% of those that pass under this window, though that’s a guesstimate. I even see sunroofs in some pickups that look like personal vehicles.

In the meantime my sweetheart is babbling about going to Midori’s for tempura. Now, I am here to say that Midori’s tempura is among the best I’ve ever had, so he gets no argument from me. Except that I had to point out: Hey, Babe, do you recall that Midori’s is in Kalispell, Montana, not right down the street from Barnes-Jewish Hospital in STL? I can’t recommend Midori’s enough, but doubt that we’ll be eating there soon. For the record, though, Midori’s has one of the most charming and fun staff members that I have ever encountered–Lowell thinks her name is Kimberly. When I asked him if he was sure, he said, “She looks like a Kimberly.” If you meet her, even if we’re wrong about her name, say hi for us.

For a moment there I was in Kalispell amidst the evergreen forest at the north end of Flathead Lake–lovely place. But now I’m back downtown in STL, looking out toward a Greek Orthodox Church, a parking lot, and a parking garage. The traffic below is loud. I liked being in Kalispell, but here I am.

Brigadoon or Shangri-La

Living in a hospital room with the love of your life who is so ill, sleeping in a fold-up bed that every night you get out,unfold and crawl into, hustling down the hall to the nearest women’s toilet, deciding you don’t really care if your hair is standing up on the back of your head and just trying to be reasonably modest in your nightgown and wrinkled robe–well, all I can really say is that I appear to be getting more used to it.

At first it felt like my grief over not being home, over not having our companion animal, sweet Akamai, with us, at my age feeling and in a real sense being homeless–it wasn’t the easiest thing I’ve ever done. I felt all the time as if my flesh was on fire, as if the locus of the pain was all over my body as well as in my heart and brain. I couldn’t draw a deep breath and felt, though I don’t think this part was true, that my throat was closing up.

Amazing what runaway emotions can do to a person. Especially when you think you’re firmly in touch with who you are and what you’re about. All I can say is that life seems to pitch monkey wrenches into the most modest of desires. I long for our little house, for our bed which I find wonderfully comfortable, for stumbling out of bed in the morning and going out in the kitchen to make my first cup of coffee, getting dressed, reading the newspaper to see what’s up in town.

Simple, provincial routines and pleasures that in a real sense, at certain stages of life, make life worth living. The truth, though, is that I’ve always enjoyed these things since I was a young woman in my first apartment. The little routines frame the day and sustain living through the ups and downs.

Driving through town not many days ago, I joked about whether our town has become Brigadoon or Shangri-La to me. Brigadoon is an old movie about a town that only appeared to outsiders something like every 200 years; the rest of the time it was simply not there to anyone who didn’t live in it. I think Brigadoon was originally a stage musical. Shangri-La is the little town in the Himalayas that may or may not exist and, if it does, is tremendously difficult to reach. It’s from a movie and maybe originally from a novel.

In a real sense, wherever Lowell is is home to me, so that part is fine. He’s sleeping now; his treatment is very tiring. I am glad to be here, doing whatever little things I can for him. It’s a truism that home is where the heart is.

Of course my heart seems a little split; maybe that’s where the pain comes from. Whatever home is and wherever, much of it remains a golden dream.

Emerging Order

Things have been chaotic for me–for us, really, though Lowell may have a different take on it–for a couple of weeks now. I could say this has been going on for over a year, since July 1, 2013, the hot, sweaty day I found Lowell asleep on our deck wearing black fleece, burning up with fever, and rushed him to the hospital. He went from urgent care to emergency, and into a hospital room where, his horrible infection undiagnosed, he nearly died.

From there we went to a major cancer center, where specialized oncologists knew what was making him so deathly ill: an infection in his chest cavity called empyema. After a week in the hospital there, and much draining of chest fluids from the infection, he wore an antibiotic pump from early September 2013 into January 2014. The pump was stunningly heavy and this uncomplaining man never said a word about wearing it day and night all those months. Every day, it seems, I learn more about how remarkable he is.

Now I am living in his hospital room while he is receiving chemotherapy for acute leukemia and is being prepared for a stem cell transplant. Today is Day 5 of his preparation, which I believe goes on for 30 days and is intended to put his acute leukemia into remission. All of this is part of the chaos of my feelings; I never had the illusion I could control much, but now certain challenges in my life seem to have taken on a life of their own.

I’m digging into myself, looking for spiritual reserves that contain the kinds of disciplines that can carry me though these times. Prayer is basic, and I am finding a new definition of “fervent” in myself. I always had trouble praying for myself, though not in praying for others. But now I know, even though I phrase the prayers as for Lowell, they are all in a very deep sense for me too. “Thy will be done”–is this a joke? MY will be done, I think, and my will is that all his treatments are successful and he is cured of this dreadful disease. MY will.

Yet where does that leave me knowing that not one bit of it is under my control? The thing I learned from Buddhism is that much emotional suffering comes from me wanting to control outcomes, when rationally I know that I have very little or no say about most such things. I control whether I do my best in life, and, practically speaking, nothing else.

As someone once said, I can’t control what happens, only how I respond to it. In a matter so dear to my heart as Lowell’s health, I’m obliged to let go and maintain hope while maintaining calm caring–and while not demanding that things come out the way I want them.

I keep telling myself this. Is it helping? Maybe. Time will tell. Since life feels so chaotic, I have to work with the chaos in myself to see the emerging new order. Whatever happens, we will not be the same. I liked us as we were. That is already gone. We continue to be more of whomever we’re becoming.

All of which says exactly nothing but I feel better for having written it here.