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 week we welcomed a new member to the Porter household. Her name is Lawtay and she is a 6 month old boxer mix. She is very gentle, loves to cuddle, and is already helping to support me and Frannie too. The only problem is that she may end up being a bigger dog than we originally expected. Right now she weighs 40lbs and according to the vet is a little underweight. By the time she’s full grown, she could be a 50 to 60 lb dog…
Janet is spending more time alone (her choice) but occasionally gets very persistent about calling Frannie for things that she either has no control over, or are things that are already done. Finally, I had to tell Frannie to not answer the phone when her mom is in that sort of mood. At the same time, Janet fell again this week and sat on the floor for a couple hours before getting herself up. She didn’t have her phone with her and she fell because she refuses to use her walker, which she needs. I have talked to her about getting a LifeAlert-type device.
If you are of a certain age and live in the US, you likely remember the TV commercials where an elderly actress intones the now famous line: “Help, I’ve fallen and I can’t get up!” Random thought: I wonder if the company exported the commercial anywhere else?
However, Janet has resisted that assistance too. She says that she doesn’t want something hanging around her neck. Maybe if we could find something that she wore like a watch, or pinned to her. In any case, it may be time to stop asking her, and to start telling her that we are getting something.
When I first started writing this blog, I frankly didn’t think Janet would live very much longer. This was perhaps understandable because last November she was talking constantly about wanting to die. In fact, one of the first things I wrote was a death announcement with blanks for time and date of death. As it turns out, it was just perseveration – this time on death. One benefit that the exercise of writing Janet’s death announcement brought out was that it got me wondering what it would actually be like for Janet to be really and truly dead.
This week I have been rereading C.S. Lewis’ A Grief Observed. I first read it many years ago and it was, at the time, a rather academic exercise of the nature of, “Oh isn’t that terrible what he went through.” Needless to say, my experience of the book is markedly different now. Now, there is nothing academic about it. Now, I have some “…skin in the game…” In fact, when I was starting this blog, many of the names I considered were variations on the title of that book.
For those who are not familiar with the book, Lewis wrote it in response to the death of his wife Joy Davidman, from cancer. However, it didn’t start out as a work to be published, rather its genesis was a collection of notebooks that he kept around the house and wrote in during the time in which he was recovering from his wife’s death. Because these notebooks were essentially just between him and God, he exhibited in them an extraordinary degree of intellectual and spiritual honesty. Moreover, many of the notes read as though he felt that Joy was, in some way, watching over his shoulder to make sure he was being honest. In the end, he didn’t hold back on any thought, any feeling, any idea, or any doubt – and he did have doubts.
It was only later that it occurred to him to take the contents of these notebooks and get them published, and when he did so, it was initially under the pseudonym N.W. Clerk.
That story also explains one of the most striking features of the book: When he went to turn it into a book, he didn’t try to take the raw material and forge it into a continuous narrative with a beginning, a series of obstacles that he had to overcome, and then finally the requisite happy ending. Rather, the book consists of short paragraphs, and even single sentences, that document isolated moments in his life and the thoughts that went with them.
As I began writing this blog, I had two prayers: 1) that I could become even a fraction of the author that Lewis was and 2) that I could be as honest as he was. As it turned out, writing is, at its core, simply a skill like brain surgery or pipe fitting. Consequently, it is something that can be learned. (Having a good copy editor who studied English at Purdue helps a lot!) The second goal, however, is a far harder nut to crack, at least in part because, unlike acquiring a skill, it is an ongoing battle. Intellectual and spiritual honesty is always a struggle because (for me at least) there is always that voice in the back of my head telling me, “Oh no, you can’t say THAT. People will be disappointed. People won’t like you anymore.”
But even if you aren’t writing for the eyes of others, this type of honesty is critical because it helps keep us grounded. There is a popular meme on line that says:
The most common lie
that humans tell is:
Unfortunately, we don’t just tell this lie to others, we lie to ourselves too. We tell ourselves that we are “okay,” when the truth is that we are far from “okay.” For example, one of the many things that Lewis observed and documented is the trouble he had pulling together the motivation to even shave in the morning. What difference did it make, he mused, whether his cheeks were smooth or scruffy?
But he openly discussed weightier matters as well, and he examined each one with an unflinchingly honest eye. He talks about his doubts about who God is, and His motivations, doubts about his own faith, doubts about the nature of grieving, doubts about Heaven and the afterlife, and even doubts about his love for his late wife.
We often think that when sharing with others that we should avoid the “soft spots” in our faith and concentrate on the places where our faith is the most sure and solid. But is that approach always the best policy? For me, the answer to that important question depends on the point of your sharing. If the point of the conversation is to highlight what a wonderful person you are, then yeah, that sort of sharing will probably serve you well.
If, however, the point is to help the person you are talking to, then it might not be the optimum approach. I have mentioned before that by training and by vocation, I am an engineer. One of the mistakes that I often see young engineers make is to think that our customers want us to be able to recite preformulated answers to their problems. Now, while these sorts of inquiries do typically lead to the formulation of a solution, what makes a customer feel comfortable with us professionally is (paradoxically) not the answers that we present, but the questions that we ask.
I would assert that the same principle is in play for matters of faith and life. When someone asks you how you are doing, perhaps they are just passing time with small talk. But perhaps too, they are wanting, or even needing, to open a dialog with someone who understands their weaknesses – not a Superman or Wonder Woman who has everything all sorted out. Perhaps when you are talking to someone, the thing that they need to hear above all else is that they can survive the worry and the doubt. I can’t tell you how many times I have felt so low that I prayed to last just one day longer than Janet so I can see this thing through to the end.
But I can also tell you that those feelings pass. I can tell you that there is light at the end of the tunnel. I can tell you that in spite of doubt and fear, there is always hope to not only survive, but to thrive.
In Christ, Amen ☩
A prayer for when you are weak with doubt…
“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 Your strength and the strength You give me. But today I want to bless You especially for my weaknesses, but not because your strength is visible in my weakness, but thank you for the weakness. Thank you for giving me the wounds and scars that allows me to relate to those in need, and offer them hope for the future. Amen”