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What… You too?

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…

So Janet now has two security cameras watching her, and between the two of them I can track where she is most of the time. I may need to get another for the kitchen, but we’ll see. The nice thing about the ones I purchased (which are made by Samsung) is that the setup was super simple, and it feels so nice to be able to check up on her anytime. Unfortunately, Janet doesn’t always feel the same.

Janet keeps wanting to stand up and walk around the apartment without her walker. One afternoon Frannie and I had to run a couple of errands, so Janet took our being out of the house as an opportunity to get up and have a bit of a walkabout without being scolded – or so she thought. As soon as she got up, the motion detector on the video feed tripped and I got a notification on my phone.

I opened the app and sure enough, there she was, walking around and no walker. The cameras also have built-in mics and speakers, that allow two-way communications. So I tapped the microphone button on my phone and said, “Janet, you aren’t supposed to be walking around. Go sit back down!” A couple seconds later I could hear my words coming out of the camera’s speaker. She looked startled, but she did it. This scenario played out twice more, but the second time when I tried to call up the camera, it was off-line – she had unplugged it.

When we got home, I reminded her that those cameras are helping to keep her out of a nursing home and that they need to stay on. She agreed, and promised not to disconnect it again, but just to be sure, I found a place to plug in the camera that she can’t reach…

Jan has also been having a lot of trouble grasping (a) how the medical alert system we just got works, and (b) the importance of wearing either the bracelet or the pendant at all times. For that piece of technology, I’m trying to keep it as simple as possible: “If you need help, just push the button.”

The service we have uses a box that is essentially a speaker phone on steroids. When Janet pushes the button, the box calls the service and an operator asks her if she needs help over the (very loud) speaker phone. If either Janet tells them she needs help, or the operator doesn’t hear any answer, they will start working their way down the contact list, calling first me, then Frannie, and finally 911.

A nice feature is that the service provides us with a lockbox for the front door (like realtors use) that contains a key to the door. This box allows the EMTs to come right in without needing to wait for the police to arrive and break the door in.

Now all I have to do is convince her to use the button. Today she fell and cracked her head. No major damage, but it bled like crazy for a couple minutes. After I got things under control, I asked her what she would have done if I hadn’t been right there when she had fallen. She said, “Surrendered to God…”

“No, wrong answer! Push the blamed button!”

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As I look back, the responses to my blog posts have run the gamut from extremely complimentary to borderline repulsive. However I can say, without hesitation, that the most common type of response could be summed up in the statement, “What… You too?” Despite the many modes and opportunities for communication we have at our disposal, we still can feel surprised when we encounter someone with whom we share experiences and feelings.

Sometimes this surprise results from unchallenged stereotypes. As a rather benign example, I can’t tell you how many times people have been taken aback by the fact that I enjoy knitting. But the fact of the matter is that in many cultures, it was historically common for men to knit because it uses many of the same skills that were needed to create and mend fishing nets. Besides, I find it utilitarian, relaxing, and even meditative.

Sometimes we are surprised by a shared appreciation of something. For instance: “Wow! You like lutefisk, me too!” Actually, that’s a bad example. Nobody likes lutefisk. You just eat it because you are Norwegian or Swedish – or a polite out-of-town visitor at a Lutheran potluck dinner.

But more ominously, the surprise sometimes derives from a feeling of isolation that leads us to believe that we are the only person in the entire history of humankind to have ever felt so sad, or so troubled, or so hopeless. Of course when you say it that way, it can sound a bit silly, but it’s not. When we are feeling isolated and alone, we have no point of reference to tell us that our current feelings are to be expected, and so are, in fact, rather common.

But that begs the question first posed above: How, in the face of all the communications options we have today, does someone end up feeling so isolated? Well, it’s not about technology, that’s for sure.

Long before the advent of Facebook, the World Wide Web, the internet, television, telephone or even the telegraph, personal isolation was a problem. The image of the loner isolated in the midst of a vast sea of humanity was a well-known theme the world over, and had been for a very long time. And to be fair, the world has, over the centuries, benefited greatly from such people. Whether you’re talking about authors, philosophers, painters, musicians, or anchorites, some of the greatest minds in history were loners.

But that image isn’t really the one I’m talking about. For those people, the solitary lifestyle they choose (or in some cases, perhaps, chooses them) was not about isolation. Rather, withdrawing from society was, for them, a tool that allowed them to be united with something larger than themselves: their art, their muse, or their God.

No, what I’m talking about is an isolation born of despair. The image I’m talking about is this one:

This painting by Edgar Degas and is titled L’absinthe or The Absinthe Drinker. Degas created the painting between 1875 and 1876, and it shows the interior of a cafe that still exists in Paris, La Nouvelle Athènes. Located a stone’s throw from a busy boulevard and, at the time, a gathering place for artists and young philosophers, the cafe and the street outside it were, no doubt, filled with happy, bustling throngs. This was, after all, Paris: the so-called “City of Lights.”

Yet all we see in the picture is darkness and isolation. The woman, apparently unaffected by the lights and crowds, is isolated from everyone – even from a male companion to her left. So she simply stares down into her drink or perhaps into the abyss.

Now, a hard question: Did any of you have a flash of recognition, like I did, looking into the woman’s face? A moment of, “What… You too?” If so, take a moment and then we’ll continue.

It would be hard to overstate the upset and anger that this painting caused when it was first shown publicly. It was called vile, disgusting, even obscene – and that was from Degas’ fans. One art critic was so repulsed and outspoken, that he later had to publicly apologize for a verbal outburst in which he referred to the woman as, “a whore.”

The point is that back then, as now, people didn’t like to look too deeply into the pain that lies in the hearts of others. Of course, we don’t know what brought the woman to this state, but does it really matter? Despair and isolation, regardless of the cause, are the same across cultures, and as we can see, across the centuries, as well.

Consequently, readers of the two or three dozen support forums I follow probably have little trouble recognizing both the feeling expressed in that face or identifying its many causes. For example:

  • Maybe you are someone who has just gotten a fatal diagnosis.
  • Maybe you are a new caregiver that has just seen your future disappear in a puff of purple smoke.
  • Maybe you are an experienced caregiver that has just been reminded of how profoundly out of balance your life has become.
  • Maybe you are wrestling with the fact that there is no one in your life that really understands you.
  • …and so on, and so on.

There is no end to the reasons…

So given all this familiarity, what is the solution? Before we can answer that question, we need to come to an understanding of the word, “solution.” There are pharmaceutical solutions, psychiatric solutions, religious solutions, and spiritual/esoteric solutions. Likewise, some solutions address root causes, while others simply help you survive until a long-term solution becomes apparent. In the right context, they can all be helpful.

But one that I particularly want to recommend could be called, “Ink Therapy.” Given recent history here in the US, I guess I should make it clear that I’m not telling you to ingest it, snort it, or take it intravenously. Rather, you want to use the ink for writing. Think about it, if the fundamental cause of “that face” is a feeling of isolation, the most direct attack on the problem is to refuse to be isolated. A couple weeks ago, I told you about my Uncle John who had the habit of just walking up to people on the street and introducing himself. In the context of the support groups that you follow, I’m suggesting that you do the same thing.

If all you’ve ever done is lurk in the shadows around the edges of our virtual campfire, go to your forums, click on the field that asks, “What’s on your mind?” and introduce yourself. Tell us who you are and what is going on in your life. Tell us your story – the end of which, by the way, you can’t yet see.

While it might seem obvious that your story is important to you, it’s probably not so obvious that it can be just as important to someone else. I have learned that there is one type of question on the forums that is almost always answered in the affirmative. I’m talking about the ones that start with the phrase, “Is it normal for…” The truth is, it doesn’t matter what symptom you describe to finish that sentence: 99.99% of the time, someone else will have experienced the same thing. So, yeah, it’s normal.

Talking, writing, communicating multiply your opportunities for “What… You too?” moments. And while those moments may not make your burden any lighter, they will nevertheless make them easier to carry because you know you aren’t really alone. Indeed, many other people have trodden the same path you are on now – and have come out the other side.

So two closing points:

First, don’t worry about whether your story is great literature – it doesn’t have to be. It just has to be real and authentic for where you are right now. Also don’t worry if your message evolves over time. One of the epiphanies I have had in going back and turning these posts into a book is that I am not the same panicked man I was last October – not to say that I don’t sometimes still panic. But I have grown, because any kind of writing (even just a short note) can be a journey of self discovery.

Second, don’t start your posts with, “Sorry, that this is a long post, but…” Nobody is handing out extra “brownie” points for being pithy. You matter. Your story matters. Just tell it.

In Christ, Amen ☩

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A prayer for when you are despairing…

“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 involvement in our lives. But today I want to bless You especially for Your intimacy with, and closeness to my heart. There are many times that I feel so broken and alone that I just want to sit and stop feeling anything. Thank you for being with me in those dark times. Thank you for surrounding me with Your children to reassure me. Take me by the hand and lead me back to hope. Give me the courage to keep reaching out. Amen.”

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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”

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Building a Team

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…

The word for this week is “fading,” because that is what has been happening to Janet. Her speech is growing even softer and less distinct, and in general she is more withdrawn. On the other hand, there have been a few positives along the way. For example, she has agreed to start taking a medicine that the doctor prescribed several weeks ago, but then refused to take. (I mentioned it in an earlier post.) So far, she seems to be tolerating it well and it is definitely helping with her chorea.

Thanks to the new meds, she is sleeping more, and seems (finally) to understand that she can’t just get up and walk around the house whenever she wants. The other night she went to bed much earlier than normal. About 0 dark 30 I went down to get a drink of water and found her sitting on the toilet, unable to get up on her own. God only knows how long she had been there. She hadn’t used her walker, so she didn’t have her phone with her, and she couldn’t call for help. A large chunk of the problem is that the last time she fell she bruised a rib, and transitioning from one position to another is painful for her. In any case, I have a medical alert system ordered and I’m waiting for it to come in.

She is also craving human contact beyond just Frannie and me. Unfortunately, everyone is so anxious to “protect” her…

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It’s common for caregivers to feel like they are all alone, like a frontier explorer. However, the situation is seldom so bleak – or at least it doesn’t have to be. The other day I saw a post online:

I have read that, “It takes a village to raise a child.”
So I was wondering: Do they just show up, or is there somebody that I need to call?

In the same way, caring for a loved one suffering from dementia is definitely a “team sport.” Sometimes people just show up in your life and sometimes it takes a bit of team building. However, before we get into that topic too far, there is one more thing we need to consider: how “attractive” it can seem at times to be a lone wolf.

The truth is, sometimes people have a hard time letting go and asking for help. Although this condition may be more common among men, I have read stories of both husbands and wives resisting letting someone else do “their job.” One big place where this feeling can arise is when it becomes clear that the loved one they are caring for needs to make the move into a full time nursing facility. I have heard people say things like they feel they are “deserting” their spouse, or letting them down, or breaking a promise.

First, I would say to the caregivers that you are not deserting anyone, or letting them down, or breaking a promise to them – or for that matter, to God either. At some time or another, if your loved one lives long enough they will reach a point where you can no longer care for them. I’m so sorry, but that is just the truth. And when that point comes, your job will shift (but only slightly) from caring for them, to making sure that they have the care they need. One type of advocacy is as important as the other.

Second, if you are reading these words as the one who is being cared for, please start a conversation with your caregiver now, today. Let them know that you realize that someday you will reach a point where they can no longer care for you. Then together, figure out what they are to do when that time comes. Don’t forget to let them know that, whatever may come in the future and no matter what some “future version” of you may say, you trust them and believe in them. Unfortunately, Janet and I didn’t do that and it has made things so very much harder. Please. Learn from our mistake.

So back to team building…

I suppose the first thing to consider is what is a “team” anyway? Obviously, it is a group of people, but more to the point, a team is a group aligned on the same goal. But even more than that, the goal needs to be the right one. Once in a job interview, I was asked if I was a “team-player” and I said, “Depends. Is the team running towards the right set of goalposts?” While there is undoubtedly a lot of bad news in the world of chronic illness, there is one bit of good news: the goalposts are clearly marked.

At one end of the field is a set of goalposts bearing a beautiful banner emblazoned in gold with words proclaiming the intent to provide the best care possible physically, emotionally, and spiritually. At the other end of the field is a goal festooned with a bedraggled, dirty rag bearing a few scrawled words announcing the intent to do just the minimum to “get by.” If you are running towards the first goal, please keep reading, but if the second goal looks attractive, feel free to leave at any time. I am sure that upon reflection, you will see that you have already done far more than is absolutely needed. Of course there is that whole “Do unto others…” trope; as well as the very real possibility that you might, in your old age, fall into the clutches of someone who believes like you do now. But suit yourself…

Under ideal circumstances, the first group of people that we should always be able to count on is family. But we all know, or have heard, of situations where family didn’t always “come through.” In scripture we see hints that perhaps even Jesus had to deal with this issue. But the concept of family transcends mere biology or DNA. As we have talked about before, there is also the family that God creates for you out of whole cloth. These relationships can form anywhere communication is possible – even online. But if family is built on communication, someone needs to extend the first hand. In my family, they used to tell the story of a great-uncle of mine who if he saw someone on the street that struck him as a person he thought he might like to know, would walk up to them, stick out his hand and introduce himself saying, “The name’s Pennington, what’s yourn?”

The second source of team members is, obviously, where you worship. Whether you call your worship space a cathedral, church, temple, synagogue, shul or elementary school gymnasium, the people you find there are an invaluable resource. They may not be experts in the disease or condition you are battling, but can offer other things. Going back to Jesus and His disciples, we don’t really know a lot about them, but if Jesus followed the pattern of other itinerant rabbis of the time they would have been young. Peter was probably the oldest being married, so maybe 18, but the rest? Again, following tradition, most likely between 15 and 17 years old. Not exactly the group that you or I would pick to change the world. But nonetheless, they did it. In the same way, those whom God has called to be around you can help change your world too.

Finally, let’s consider the medical members of your team. For the most part, Janet and I have been extremely blessed. I have described Dr Cotugno in Pennsylvania (who figured out Janet’s diagnosis) as basically a bulldog in a white lab coat. He knew that it wasn’t just in her head, but that there was something wrong with Janet. But more to the point, he wasn’t prepared to rest until he found out what it was – that’s where the bulldog comes in. He was going to find out what was happening.

Then there was Dr Kostyk in Ohio. Knowing that we were “new” to the situation, she went far beyond simply examining and treating. She also spent a lot of time with us explaining and educating.

Finally, what can I say about the crew at the HDSA Center of Excellence at UT in Houston? Their attitude is that although Janet may be the only one carrying the gene, HD is nevertheless a family disease. I’ll never forget our intake appointment with Dr Erin Furr-Stimming. She sat with us for hours talking about everything. We discussed symptoms, family dynamics, medication, the future, everything. The thing they brought to the party was not just medical expertise, but also a lot of heart.

So there you have it. Hopefully by now you should see that there is a great team out there, and they’re waiting for you to find them.

In Christ, Amen ☩

PS: Just a quick note in closing. I have heard from a number of you that you would like to be able to get a compilation of my writing in book form. I am still working out the details, but God willing, that is going to happen this year. It will be available in soft- and hardcover, as well as an eBook. I’ll keep you posted.

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A prayer for when you need a team…

“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 lessons that you teach. But today I want to bless you especially for demonstrating the importance of teams – even Jesus had His disciples. So open my eyes to see the team that surrounds me, and open my heart to enthusiastically join teams that need me. Amen”

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What is the Point, Really?

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 Janet fell again – twice. According to her, she is totally wheelchair bound because she can no longer use her walker. Okay, fine. Except her solution is to not stay in the wheelchair and call Frannie or I when she needs help. Oh no, her solution is to try and walk where she wants to go without the walker! In her mind, the walker no longer works for her, so she just stops trying to use it. In fact, according to her, the walker is why she fell the last time. She said that she tripped over it. Unfortunately, she fell in the hallway and the walker was in the living room, two rooms away!

This whole situation really worries Frannie because she has a friend whose mom fell, broke her hip, and died in the hospital. Consequently, Frannie is scared – and not without reason. With the current panic about this virus, if Janet does fall and has to be taken to the hospital by an ambulance, Frannie might not get the chance to ever see Mom again, dead or alive.

So for now, Frannie and I will watch Janet more closely and try to keep her in her chair.

This week I have also been revisiting the topic of retirement – and unfortunately my own words have been coming back to haunt me. Many years ago, when our son was in Boy Scouts, I taught a financial planning merit badge class. During that class, we discussed looking for their life’s work. A point that I made was to always start the search from what you enjoy doing. My reasoning was (and is) that we are all here to fill a particular niche in the world, and because God loves us, He will put into our hearts a love for doing whatever it is we are here to do.

One of the boys asked, “But Mr. Porter, what if you can’t earn a living doing what you love doing?” In response I said, “Look, if a bunch of good ‘ol boys from down south that loved to fish can figure out a way to spend all their time fishing – and get paid to do it – you’ll figure something out!”

Those words were so easy to say, but how to put them into action? Now I am the one trying to figure out my future. To wit, how do I maximize my time at home taking care of Janet, while doing what I love (writing)?

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I feel I should start off by apologizing ahead of time in case the following conversation devolves into an emotional rant. This week it seems like I have been inundated with absurdist comments – or at least comments that from the Christian perspective, are rather absurdist. What makes matters worse is that some of the comments are coming from ostensibly Christian organizations. Consequently, I feel particularly uncomfortable with the direction in which things seem to be going.

Before the pan(icked)demic took hold, caregivers were under-appreciated and overwhelmed – but at least there was no hostility towards us. Over the past few months it feels like things have changed. It’s like people have turned off their brains and are all reading off the same script. I’ve been asked, “Don’t you care? You could bring the virus home and your wife could die.”

Sometimes, I feel like tapping them in the middle of the forehead with my forefinger (really hard) and yelling, “Hello? Anybody home? She has HD, she IS dying.” Sometimes, I feel judged by people who have no idea what is going on with Janet and seem unwilling or unable to grasp the implications of her disease. Looking back, I realize that there is only one thing that has remained constant in the time since Christmas: Janet is tired and wants to go home to be with God. Every day is painful for her, every day is torture as she feels herself melting away, and like an injured animal she just wants to curl up and hide. Who knows? Maybe those feelings are the root cause behind some of the behaviors that seems so willfully self-destructive.

Of course in the grand scheme of things, HD, with its 30,000 diagnosed cases, is not really very significant. But there are many other terminal diseases. At least people dying from cancer (like Lewis’ wife, Joy) can know and understand what is happening. However, do you have any idea how many different diseases can cause dementia? Those poor souls don’t know and can’t understand what is happening, so they die alone, deserted and isolated from everything that is familiar. Who of us can relate to that level of despondency?

However none of those facts matter in the slightest to the people with the scripts. They just read from the carefully typed-out and focus-group-tested talking points and no deviation is to be tolerated! Conform or be publicly shamed.

And then there are those who try to make it sound like they are concerned for you and your welfare. Admittedly I am old, but I can remember when the predominant feeling was that you deal with what life hands you, and just keep moving forward as best you can with God’s help. Now it seems like everywhere I turn there is someone telling me to just, “…say a quick prayer, and move on…”. The point of that particular post from a “Christian” organization, was that if you dwell on someone else’s problems it will drain you emotionally. I’m not saying that helping others doesn’t drain you emotionally, because we all know that it does, but their post was saying that we should use that effect as an excuse to not be involved in the lives of others – which is clearly wrong.

I once saw a cartoon where a lawyer was reading the will of a wealthy man to the “grieving” relatives who were presumably waiting to get their cut of the inheritance. The will started: “I John Smith, being of sound mind, spent it all before I died…” A real-world example of a similar attitude was Andrew Carnegie. While he accumulated unimaginable wealth as a young man, in later life, he started systematically giving away his vast fortune, to the extent that by the time he died he had little money left. And what did he use his money to build? Colleges, universities, but mostly libraries! I don’t know about you, but I grew up going to a Carnegie Library. Later, I was surprised to learn that there were actually libraries in the United States that he didn’t build. You see, in small town America, the words “Carnegie” and “Library” just went together.

That is sort of how I see things spiritually. I have been blessed with certain resources and, as in the parable of the talents, those resources are to be used. When those resources are used well, there is gain. But remember the words to the servant that just sat on his gift and hoarded it – he was called “wicked” and “lazy.” In sports, they use slightly different imagery. They say that if you have anything left when you get back to the locker room, you didn’t play hard enough. At the end of the day, that is what I want for myself: I want to be able to say that I “left it all on the field” – and if that makes me look irrational in the eyes of some, so be it.

In Christ, Amen ☩

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A prayer for when you are feeling tired and irritated…

“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 consolation you provide. But today I want to bless you especially for the gifts and resources that You furnish to Your children. You always send me out into the battle well-prepared. Thank you for always giving me what I need, even when I don’t realize I need it. Amen”