This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.
If you would like to read our story from the beginning, you can start here: How We Got Here…
This morning my sister asked by Messenger how things are going in Texas. I replied, not so good, and went on to explain some of the challenges that have arisen in even just the past 48 hours. She replied,
“Very hard on everybody. Because she’s slipping away?”
“Yes, and the slipping is not smooth.”
I guess that you could say that the name of the game this week has been “agitation,” and more specifically, how to control it. But please note that this isn’t the kind of agitation where she is angry and striking out – she is much too weak for that. No, this agitation is characterized by constant talking, questioning, and worrying.
Adding to the troubles is that the verbal communications are often little more than word salad and we are left trying to figure out what she is trying to say. For example, this morning she said that she couldn’t see the apple on the wall, and was demanding that I find her apple. I had no idea what she was talking about, but then one time (and she only said it once) she said something slightly different. She said:
That singular reference to being a teacher reminded me of a couple years ago when we went and talked to a group of 2nd year medical students about her disease. As a thank you gift, the class created a poster that they all signed, thanking her for coming to teach them.
There was her apple from a class of doctors that are graduating this year. I had it mounted and framed:
This experience got me thinking about understanding her in particular, as well as others in general. As I was talking about this “interpretation” problem with my sister, she reminded me of a passage that many churches today ignore that deals with two gifts of the Spirit: “speaking in tongues” and the “interpretation of tongues.” According to Paul, these gifts should always appear together. My sister said:
“But you can still, having a heart for Janet, pray for … knowledge that you can’t humanly know. So don’t look for carefully strung together, planned words from Janet (because she can’t do that anymore) – listen carefully from your heart for the spirit behind them. May the Spirit of God be your interpreter!”
“And your touch may be the most meaningful thing you can do now. Even if you don’t understand now, you understand.”
Sounds good to me.
In other developments, a real God-send has been the special air mattress that hospice provided. It is much more comfortable than her original solid mattress and is keeping her bedsore free. The way it works is that, unlike an air mattress that you might use for camping, this one has two independent sets of internal air chambers that an external pump fills alternately. Hence the places where her body is being supported is constantly varying – hence, no bedsores.
Janet is also now on oxygen part time. Every couple hours I check her oxygen levels and put a mask on her if it drops below 90%. In addition, we put it on her at night so we don’t have to bother her with the monitoring.
As far as new behaviors, just the past couple days she has started stretching her head and neck backwards, to the point that at times her chin is pointing almost straight up. What (if anything) that means, I have no idea, but it is something new. The only thing at this point that I can see is that it makes it more difficult for her to drink – even with an angled straw.
Oh yes, my unemployment approval finally came through. I may have forgotten to mention it, but I got fired the 2nd of September, my former employer saying that I don’t communicate well…
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This week I stumbled across a documentary called Why Beauty Matters that was produced by BBC Scotland and originally broadcast on BBC2. It was by the English philosopher Sir Roger Scruton. His point was that in art of all kinds, beauty has been replaced by what he called “a cult of ugliness,” as exemplified by the French artist Marcel Duchamp who signed a urinal with a fictitious name and put it on display as a work of art.
Likewise, in architecture, he asserted, beauty has been replaced by “usefulness” with the resulting buildings being so ugly that they ultimately became useless. As a case in point here, he used the example of his home town of Reading in South Eastern England, which in a fit of civic redevelopment during the 1960s, put up buildings that were so ugly that, by the time of the filming, they had been abandoned and vandalized, and were covered with graffiti.
By the way, if you are from Reading and are offended by that description, please understand that I have never been to the place, so I only have the documentary to go on.
In any case, his underlying point was that beauty matters, for it provides us consolation for the parts of our lives that aren’t working out so well. In his view, if we as a global society lose beauty, then we are truly lost.
Of course when you are caring for someone with a chronic health condition, we are often more conscious of the ugly than we are of the beautiful. Changing a diaper is not, in itself, beautiful. A person drooling all over their clothing is not beautiful. A person jerking spasmodically in a chair, or as they try to walk, is not beautiful. So if we see life like a medieval painting with no background, all we can see is the foreground image – which, let’s be honest, is often ugly, even if your loved one isn’t suffering from a terminal or chronic disease.
However, one of the innovations of renaissance art was the addition of backgrounds to paintings. This addition served to, among other things, set the foreground image (whether good or bad) in context as but one frame or scene of a longer story. In the same way, our lives and caregiving duties can have a background that sets the ugly moments in a context which allows us to see further and comprehend the beauty of the overall story.
One of the things that I try to emphasize to young engineers is that a number sitting inside a computer is essentially meaningless. For example, take the number 42, there is no way of knowing whether the number represents the temperature of an uncomfortably cool room in the US, an unbearably hot room in most other places in the world, the atomic number of molybdenum, or the “Meaning of Life, the Universe and Everything”.
And all of life is the same way: facts and events without context are (like the number 42) in themselves meaningless – or as the author of Ecclesiastes would say, just so much hot air. It is the context that gives them meaning. So what is the context for your life? Beauty is always available.
In Christ, Amen ☩
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A prayer for when you are overwhelmed with ugliness…
“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the beauty that surrounds us. But today I want to bless you especially for redeeming me and making my life beautiful – no matter how ugly it might seem at times. Show me how to reflect the beauty of Your being. Amen.”