Doing the Right Thing

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…

Got Janet outside a bit this week. She had to get her blood test redone for her thyroid meds. As it turns out, she has lost enough weight (she’s now down to 103 lbs) that her PCP has decided to reduce her dose from 60mg down to 30mg. By the way, for her thyroid she takes a natural product called Armour Thyroid.

“Oh Armour, you mean like the meat packing company?”

Yes, exactly like the meat packing company. The medication consists of desiccated and prepared porcine (pig) thyroid glands. The more common alternative is the synthetic hormone levothyroxine (often sold under the brand name Synthroid). Unfortunately, this synthetic hormone works slightly differently and Janet does not tolerate it well. Over the years we have had to do a lot to maintain her supply. At one point, the government tried to shut down production of the prepared tablets by issuing a total recall for unknown reasons. In response, we had to go to a “compounding pharmacy” that would buy the medication in bulk from the manufacturer and make up capsules for Janet to take. Of course, that source wasn’t covered by our insurance…

But back to this week. It did Janet a world of good for her to get out. After getting the blood draw done, we had a bit of shopping to do, and although all she did was sit in the car, it was like a tonic for her. She was able to see people and feel the warmth of the sun on her face. Sometimes doing things that make you feel healthy are more important than blindly conforming to someone else’s vision of what it means to be “safe.”

Unfortunately, that euphoria didn’t last and a couple days later I almost had to bring her to the hospital due to suicidal ideation. We now have two security cameras (with motion detection) watching her, and she has a new medical alert bracelet so she can call for help – and all the sharp silverware and cutlery is up, out of her reach.

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This week, I have been thinking a lot about an oft-told myth that to avoid trouble with others all it takes is do what is right and tell the truth. Thanks to the drama being played out every night on the evening news, we can see how tragically wrong-headed that idea is. Telling the truth is just as likely to get you stoned as it is to get you praised. And a big reason for this tragedy is that the standard of public discourse today seems to be, increasingly, questions in the form of the old joke:

“So, are you still beating your wife?”

In other words, before you have even opened your mouth, the inquisitor (and I use that word deliberately) has already decided you are guilty. The only matter left to determine is, of what?

Now, it’s one thing if all you have at stake is your personal comfort, livelihood, or freedom. But what happens if you are a caregiver for someone who is dependent upon you? In that situation, things get a lot more complicated. For example, you can’t simply say, “…go along, to get along…” because “getting along” might mean doing or submitting to something that is harmful to the one(s) for whom you are caring. However, if you resist too much and end up in jail for your “crimes” – like a father who was recently arrested for playing catch with his daughter in an empty park – who takes care of your loved one then?

If you are feeling confused and hopeless right now, know that those feelings are by design. You are experiencing exactly what many in power today (as well as the would-be power-brokers) want you to feel. Their goal is to fill your mind with so much doubt and fear that you are willing to be led by anyone proclaiming that they can see the way out of our current troubles. Of course, the problem with these “solutions” is that the people handing them out only provide advice that is going to benefit themselves, with the result that you, your loved one, and your real needs are left twisting in the wind.

Today, there are people offering solutions from a mad variety of political, sociological, and religious positions. However, the choice between them often boils down to who can give out the most “goodies” – and it matters little whether the advisor is offering money, power, enlightenment, or Heaven. Rarely, if ever, do we hear the argument made about which of these myriad of options is true.

In the past, there was a method for identifying what was true that revolved around a “marketplace of ideas.” The concept was that if people openly and honestly discussed questions, the truth would win out because it would be the only answer that satisfied reality. But for this competition of ideas to reach the desired goal, there are two obvious prerequisites: First, as the English poet and philosopher John Milton stated, there must be a “free, transparent public discourse.” Second, the participants in the discourse have to agree that there is such a thing as truth.

Unfortunately, today we fail on both counts. Increasingly, manipulators are either making certain ideas unacceptable by fiat at the outset, or are redefining phrases to make the accurate expression of certain ideas impossible. For example, you can’t have a serious discourse about “equality” if the person you are talking with has redefined the term as a racist “code word.” In either case, the goal is to control and regulate discourse so that only certain ideas can be expressed – and no dissent is allowed.

Likewise, if the manipulators are going to control the discourse, they can’t allow themselves to be embarrassed when one of their ideas bumps into reality. So they simultaneously give everyone the power to define what is real for themselves in the form of a personal reality that can’t be questioned.

Consequently, when all is said and done, the once-vaunted marketplace of ideas has become little more than a philosophical smorgasbord from which one can pick and choose any concept that strikes their fancy:

“Yes waiter, I would like the Existentialist Blue Plate Special with a small order of Religiosity on the side. Oh but hold the Libertarianism, it gives me gas…”

And if you happen to believe two contradictory ideas, no problem. What’s a little cognitive dissonance between friends?

Now if life is going along pretty well, you might be able to get by with this sort of intellectual dishonesty. But if you are suffering from a chronic disease, or are caring for someone who is, you don’t have time for such mind games. If, as in my case, your wife is dying, that is a hard, uncompromising reality that demands attention. And it matters not a whit whether you agree with the diagnosis. CAG counts trump opinions. It is an example of what I call True truth and a firm grasp of this truth is one of the things that you need in order to deal with the situation I outlined above.

The second thing you need is confidence that you aren’t in this struggle alone, but this conversation needs to be bigger than just how to obtain effective protection from the, “…slings and arrows of outrageous fortune.” Rather we need to see all our actions in the world as part of a process in which we are just one part. (For extra credit this week, contemplate the phrase that I didn’t include in that last sentence. I didn’t say, “small part.”) But if I am just a part, who is orchestrating the whole? I would assert it is The One whose very being defines the fundamentally True truth that is the basis for the reality in which we live. Here are three aspects of the support that we can expect:

First, God has redeemed my past. Unlike the opinion commonly expressed by the mob, I don’t have to be the result of an immaculate conception. In fact, God has a habit of using people with “a past,” as folks used to say. While the perfect, sinless people that are so common today would be tearing down their statues, God says, “That’s okay. We can fix that flaw and We’ll turn it into something beautiful.” Note that in the end, the resulting life is not as it was before – it’s better.

Second, to complete the work of redemption, God is walking with me in the present. And yes, it often isn’t pretty, but we can be confident that it will all work out because, unlike me, God is totally committed to the perfect end result. Consequently, whatever you or your loved one must endure in order to do what is right, it will move you towards the ultimate goal.

Third, God is going before me into the future. It may seem unfortunate, but the simple fact is that you and I can’t see even one second into the future with absolute certainty. As a result, we are often taken by surprise by what happens next. However, for God, all of human history is like a vast tableau that He organizes and structures for our benefit. However, this Divine Work isn’t like a movie I saw once where Greek gods were playing chess with people’s lives. God is not sitting uninvolved is some far-off heaven. Remember, He is “Emmanuel,” God with us.

So, in the end, we see that while the proper course of action may not be easy, it is really very, very simple. Truth matters. Right matters. So tell the truth and do the right thing.

In Christ, Amen ☩

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A prayer for when you are feeling confused and hopeless…

“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 certainty of who You are. But today I want to bless You especially for not being silent in the world today. Thank you for going before me, walking with me, and protecting me. Amen”

Letting Go…

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.

Resuming where we left off last week…

A few weeks ago, Janet and I made the final arrangements to have her admitted to home hospice. It’s clear that Janet has been talking to Frannie because she now understands what “hospice” really means: Mom is dying soon. The three of us spent a lot of time last night hugging and crying. This is a very hard time and “letting go” is becoming very real.

One of the things that I have learned over the years is that grieving is a complicated business. In 1969 a woman named Elisabeth Kübler-Ross came up with what she called the 5 stages of grief (denial, anger, bargaining, depression and acceptance). While her work has come under some criticism in more recent years, it doesn’t take a genius to see that degenerative conditions like HD, complicate things by requiring you to basically start the process over every morning, because every morning there is a little more of your loved one “missing”.

For me, grief has become an open sore that is constantly getting picked raw. Thus even on good days, I have noticed that I tend to have a very “thin skin”. It’s as though all my capacity to deal with the world is used up by the normal flow of the day. Consequently, even small problems can leave my emotional reserves “overdrawn” and throw me into a tailspin. I imagine that this is what the next few months are going to be like, until Janet actually passes – and probably afterwards too.

But that’s not the whole story. The fact is, no story is over until God has His say. I just finished a piece that I wrote for the church newsletter that consisted of some thoughts brought up by the classic Eagles song, Hotel California. Besides ending with The Greatest Guitar Duet in Rock-and-Roll History, its words tell a story that haunted me for a long time. The thing was, I lived in California for several years, but they weren’t good years. In fact, they pretty much stunk. During my time in SoCal, I made a lot of mistakes and went through a lot of changes that left me feeling empty inside. I got to thinking that since California was the problem, all I had to do was get back to who I was before I moved to California. Then things would be good again. Then my life would be back on track – as the song said:

“…I had to find a passage back to the place I was before…”

Unfortunately there was one small problem with that approach:

“…’Relax’ said the night man, We are programmed to receive.
You can check out any time you like, But you can never leave!”

In other words, the hope of getting back to who I was when I left the hills of southern Missouri, was ultimately a false one. No matter how hard I tried, I could never leave behind me California and all the pain it represented. Eventually, though, I learned that the line I took as hopeless, really wasn’t. The point I was missing was that while its true that every experience permanently changes who I am (which is actually the point of the song), it’s also true that God uses the “stuff” I go through to help form me into what He wants me to be – and that includes something as tragic as the looming death of my beautiful Janet.

With that realization, I began to grasp the utter pointlessness of looking at past mistakes and life events from the standpoint of, “If only…”. The hard truth is that there is absolutely nothing that I can do to turn back the clock and undo my mistakes. As lawyers like to say, you can’t unring a bell, and as I know from my own experience, you can’t unmake mistakes. But just because I can’t do it, that doesn’t mean that it can’t be done. As a believer, all of those failures in my past are opportunities for God to step in with His redemption and grace. There is nothing that is so broken that God can’t fix it. Divorces, deaths, relationships, you name it – God can, and does, redeem it all.

In Latin, there is a motto that I have come to love: semper prorsum. It literally means: “always forward”.


I started out this blog a couple months ago by talking about a wedding in our family. As we now come to the end of the first phase of this blog – the “historical” part of this story, I can see a parallel between marrying someone and losing them to illness – which if you think about it shouldn’t be too surprising.

For example, we tend to think about both things in terms of events – weddings and funerals – when in reality they are processes that can start months or even years before the culminating event. For example, you don’t become united with a spouse all at once, rather you start drawing together the moment you first meet. In the case of Janet and I, that first meeting took place in a Friendly’s restaurant around the corner from Symphony Hall in Boston. Likewise, when you are losing a spouse or loved one to a terminal illness, the letting go doesn’t occur at the graveside. For us it started when we got the diagnosis of Huntington’s Disease sitting in Dr Cotugno’s office in Washington PA.

Another similarity is that, for both of these processes, the fact of what is going to ultimately happen starts as an intellectual concept that seems at first rather unreal despite our recognition that it will occur – someday. Then somewhere along the way, something happens that turns the ephemeral someday into the reality of today. For me, our wedding became “real” the first time I looked at Janet as we were doing something mundane like washing the dishes and I said to myself, “Yeah, I’m going to spend the rest of my life with that beautiful woman. I done good.” For our family, the point of grasping the full import of our impending loss came when we admitted Janet into home hospice and I said to myself, “Oh God, I’m not going to spend the rest of my life with this beautiful woman.”

One of the things that grief can do is turn your head around and keep you pointlessly fixated on the past. If only we had argued less, if only I had taken her dancing more, if only I had spent less time working away from home.

If only…

If only…

If only…

But you don’t find hope dwelling in the past because hope is about the future. It wasn’t so long ago that I couldn’t visualize tomorrow at all. When I tried to think about the future, all I saw was an endless string of dull, gray todays. Now I can sort of see to Christmas, which is good because we hear at Christmas one of God’s most beautiful names: Emmanuel – “God With Us”. This name assures us that God doesn’t stand back and view us in a detached way from some far-off heaven. Rather, God is committed to walking with His people as they walk through whatever dark valley that they must traverse.

Where can I go from your Spirit?
Where can I flee from your presence?
If I ascend to heaven, You are there;
If I make my bed in Sheol*, behold, You are there.

If I take the wings of the dawn,
If I dwell in the remotest part of the sea,
Even there Your hand will led me,
And Your right hand will lay hold of me.

If I say, “Surely the darkness will overwhelm me,
And the light around me will be night,”
Even the darkness is not dark to you,
And the night is as bright as day.

* ”…make my bed in Sheol…” is a euphemism for dying.
Hence, the line means, “Even if I am dead, behold, You are there.”

In Christ, Amen ☩


A prayer for when you are viewing life in the rear-view mirror…

“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 timeless love. But today I want to bless you especially for being by my side throughout the troubles of life. Please give me the faith to not reflexively obsess about past sins that I have confessed and You have long-since forgotten. Teach me to always “face front” as that is the only way that I can see where you are taking me. Amen”