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Life Interrupted

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 Monday we weighed Janet and she was down to 91 lbs. This week Frannie saw Janet as she was getting a bath and it scared her – again. Frannie and I take walks every evening and lately the topic of conversation is always the same: What are we going to do after Mom dies?

I guess it’s pretty normal to look at a coming change and wonder what it’s going to mean. Of course, most talk of that sort is really just speculation because, in truth, we have no idea what the impact is going to be.

My company has me working at home, at least until sometime in September. So for a change this week, instead of working in my office, I’ve been working downstairs sitting with Janet. On the one hand, having me in the same room seems to be calming. But on the other hand it means that I can watch her and she feels a bit resistant to the oversight.

Thursday, I was working and she asked me to go upstairs to work. When I asked her why, she said: “The clicking of the mouse is too loud.”

“The clicking of the mouse is too loud…” I said slowly. I was skeptical, but figured why not? So I gathered my things and went up to my office on the 2nd floor.

However, no sooner had I sat down at my desk than the alarm that we have on her chair to let us know when she is trying to get up went off. Running to the living room, I saw her quickly sitting back down.

“I was trying to reach the TV remote,” she explained.

“Janet, the remote is right next to you on your tray.”

“Oh?” she said, feigning surprise.

“Yeah. You know what it looks like to me?” I asked. “It looks to me like you wanted me upstairs so you could stand up and take a stroll without me scolding you. That’s about right, isn’t it?”

Realizing that she was busted, she nodded. “Yep…”

We talked about it a bit more, and then I moved my work back to the living room. I guess the mouse is much quieter now.

Then Friday, we had a visitor. Ray, the pastor of the church that Frannie and I have been attending during this shutdown, came by for conversation and prayer. The visit was also an opportunity for Ray to meet Janet and get to know her a bit. In addition, he brought communion – which is something that Janet has sorely missed. For Janet, communion is about remembering, but it is also a way of welcoming and receiving Jesus, again and again.

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It occurred to me this week that there are basically two kinds of people in the world: Those for whom reality is an interruption keeping them from the more important things in life, and those for whom the interruptions are life.

As a caregiver, I fall often into living out the first option, when I know that the second one is actually true. The problem is that there is a curious idea abroad in the world today that encourages us to establish goals for ourselves and then judge the quality of our life based on our perceived progress towards meeting those goals.

Unfortunately, this approach to life has some problems. For example, I (like many people) began choosing my future at an insanely young age when someone first asked me what I wanted to be when I “grew up.” Now, 66 years into the process of growing up, if I were to measure my life against those pre-pubescent goals, I would feel frustrated – I am clearly not an astronaut. But even if I shifted my focus to include more adult goals, the frustration would remain.

For instance, my intention was to have a home in one place and not move my family as much as my folks, brother and I moved while I was growing up. But those intentions were frustrated to the point that our kids don’t really feel like they have a “hometown.”

My goal professionally was to have a career with a good company and retire after many years of faithful service with the proverbial gold watch. That goal was frustrated by companies that labored under the burden of poor management – and my pathological inability to keep my mouth shut when I see something wrong. (I know, you would never have guessed that about me, right?)

And in terms of relationships, I had hopes for a long and happy marriage to Janet, and dreams of us spending our “golden years” traveling around the country in a motorhome visiting grand-kids – but these are the biggest frustrations of all.

If I were to focus solely on those frustrations I would, like the small-time boxer Terry Malloy from the play (and movie) On The Waterfront, cry out:

“I coulda had class. I coulda been a contender. I coulda been somebody…”

Viewed from that perspective, all I have to show for 66 years on this earth are regrets.

Of course, there are those who adhere to the cultural myth about the “self-made” man or woman who, through strength and perseverance, overcome all obstacles. But as attractive as it might seem to say with the Victorian poet William Ernest Henley:

I am the master of my fate,
I am the captain of my soul.

… the truth is that soul captains rarely meet happy ends. For example, Henley himself died in pain from tuberculosis at the age of 54 after an amputation caused by the disease, and in the end his over-the-top poem Invictus (for which he is famous) didn’t change his life in the slightest. I wonder if, in the end, the poem’s hubris provided him with any real comfort?

But there is still the other option – that these “interruptions” and “side-tracks” are themselves life – maybe not one we chose, but one that was needful. From that perspective I can see beyond the roadblocks to recognize that while some of the big things didn’t work out as I hoped, many others that I didn’t see coming were better than I ever imagined.

For example, dreams of having children together are wonderful – even better is the opportunity to actually help bring them into the world, as I did when I cut the umbilical cord for my son Michael. Or to share the joy of watching our daughter Frannie grow and exceed the expectations of the “professionals” who forecast for her a bleak future.

“Ah. But,” you might ask, “surely you don’t mean to suggest that there is anything positive in Janet’s current condition are you?”

Actually there is. Janet has been a teacher her whole life. This illness will have been her biggest lesson to the world: How to face a future that in the short-term is clouded and uncertain, and how to do so with grace, dignity and strength. She is a demonstration of faith in the face of absolute certainty of “failure.” She will die, but it will be a death that is her entry into a new life filled with joy and health. Over the years she has many times expressed that hope, and that faith.

And for me? Well, many people go through life wondering about and obsessing over whether they have ever “made a difference” in the world. When someday on my deathbed, I consider my life while the light fades, I will be looking not at a seamless darkness born of frustrations and failures, but rather a starry night shining brightly with a myriad of points of love and grace. Not exactly what I had planned, but truly it is all good.

In Christ, Amen ☩

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A prayer for when you are facing the end…

“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 eternal presence. But today I want to bless you especially for offering us an invitation to enter into your joy. Thank you for redeeming not just my future, but my past as well. Amen”

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Mirages

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…

Janet is continuing to eat less and less. This week on Facebook, a memory picture came up of Janet back when we could go out to eat. At the time of the picture, we had gone out to a Cajun restaurant here in Houston and she probably weighed 185 lbs., or thereabouts. Now she weighs 100 lbs., give or take a bit.

Lately I have been thinking about the past and our life together – a lot. For instance, I have been remembering when she was pregnant with our son (our first child) and we were trying to spruce up the house that we owned in Norwood, Massachusetts. It was during that effort that we learned the “joys” of such things as removing horsehair plaster and working with turn-of-the-century electrical systems.

It was also during that remodeling effort that Janet got it into her head that what the house really needed was a fresh coat of paint.

Now the thing to understand is that while the house itself was only two stories high, due to the way the land sloped and the way the basement was laid out, the second floor in front was actually nearly three stories off the ground.

So we bought the paint, a spray gun, a ladder and all the other miscellanea that one needs when one is going to paint a house. After we got all the stuff home, I discovered that Janet expected that SHE was going to paint the house. When I tried to point out (quite reasonably, I thought) that she was eight months pregnant and shouldn’t be climbing up and down ladders, she pointed out that I needed to mind my own business. After all, she had painted a house before – even if that house was a single-story bungalow.

In the end (I thought) we agreed that she was not to be climbing up and down ladders. Moreover we would get professional painters to handle the eaves of the second floor, which were a full three (scary) stories off the ground.

But 2 days later, I got home from work and there was my very pregnant wife painting the second story eaves. Never did figure out how she got the ladder up that far…

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A basic truism today is that much of society is consumed with the issue of identity. And like so many things, people today have paradoxically redefined the word. Rather than meaning who you are personally, it is seen as a way of indicating what group you belong to. Don’t get me started on that degenerative practice!

But even when the word is used properly, it’s crazy some of the ways in which people choose to identify themselves. For example, when growing up I had an aunt who took great pride in identifying herself as a [blank] of the Rockford Illinois, [blank]s. I guess we were supposed to be impressed.

Then in the 60s and 70s, identity became something for which you had to search – often in exotic locales. In fact, it became something of a cliché for someone to say they were taking a trip or undertaking some other kind of experience in order to “find themselves …” Over time, as the baby boomers grew older and became more settled, the story evolved into one of a successful, but unhappy, person abandoning their comfortable life and taking up a quest to figure out “…who they really are…”

A popular subgenre of this type of story concerns a successful professional person who thinks that they have life pretty much figured out, but for some contrived reason, moves from the city to the country (or vice versa) and there discovers “…who they really are…” – often in tandem with a new love interest. Here in the US, there is an entire TV network (called The Hallmark Channel) dedicated to broadcasting seasonally-inspired versions of this story 24/7.

While a key part of all such modern fairy tales is the idea of making a clean break and starting over, reality has an unpleasant way of intruding. Even if you aren’t a successful professional, you can find yourself being forcibly evicted from your warm, safe, comfortable rut. When my wife first got sick, she did some counseling where she was advised to remember that, “You aren’t your disease.” And for a while, I guess that was true. But as time and the disease progressed, it became increasingly difficult to maintain that facade.

Moreover, it wasn’t just Janet that was going through changes. I was desperately trying to figure out where our life was going. Consequently, there were two identities in a constant state of flux, but what are the odds of two erratic lives staying connected the way they had been before?

In my own experience, as well as those of others, it is not uncommon to hear someone invoke or describe an “Alice in Wonderland” feeling. For instance, at one point, as Alice wanders about trying to find her way, she encounters a hookah-smoking caterpillar.

Alice and the Caterpillar
Alice and the Caterpillar

“Who are you?” said the Caterpillar.

This was not an encouraging opening for a conversation. Alice replied, rather shyly, “I – I hardly know, sir, just at present – at least I know who I was when I got up this morning, but I think I must have been changed several times since then.”

“What do you mean by that?” said the Caterpillar sternly. “Explain yourself!”

“I can’t explain myself, I’m afraid, sir,” said Alice, “because I’m not myself, you see.”

“I don’t see,” said the Caterpillar.

“I’m afraid I can’t put it more clearly,” Alice replied very politely, “for I can’t understand it myself to begin with; and being so many different sizes in a day is very confusing.”

Whether you are a patient or a caregiver, that is the haunting question – “Who are you?” – even as society imperiously demands that we explain ourselves. Moreover, we seem surrounded by things offering hope for our sad condition, each bearing helpful little tags reading, “Eat Me!” or “Drink Me!” Little wonder the 60’s drug culture fell in love with the book.

One pill makes you bigger,

One pill makes you small,

And the ones that mother gives you,

Don’t do anything at all.

Go ask Alice, when she’s 10 feet tall…

Jefferson Airplane (White Rabbit 1967)

Like Alice (and perhaps Grace Slick), we sometimes feel so big that we are the unwelcomed center of attention, while at other times we feel small, insignificant and ignored. And yes, being so many different sizes in a day is very confusing.

The basic problem is that we always define our identity, who we are, relative to something or someone else. My aunt derived her identity relative to her ancestors and their perceived social standing. People who went out trying to find themselves were searching for an identity based on novel experiences that were bigger than the familiar world they grew up in. The folks in the Hallmark Channel movies are simply exchanging an identity based in one set of professional and personal relationships for one based in a different set of professional and personal relationships.

But those relationships are the identity’s vulnerable spot. If something happens to the relationship, the identity or identities deriving from that relationship crumble. And what is there that isn’t susceptible to loss and decay? Marriages end in divorce or death, siblings are lost, children grow and move away for lives of their own, careers end, pets die, and organizations come and go – or change beyond recognition.

As far as the eye can see, everything around you, animate or inanimate, has a life span, a service life, an expiration date, a timeout, a proper season, or a shelf life.

So I might say, “Ok, if that’s the game – I choose not to play it!” Unfortunately that strategy doesn’t work either. Even if I eschew all contact with the world and become a hermit, I am still defining myself in relation to the world – in this case a world in which I don’t wish to participate. But that identity is as vulnerable as any other. Remember the classic children’s story Heidi? All it took was for a little girl to wander in and demonstrate that the world is not so terribly horrible and the grandfather’s identity as a curmudgeon is blown sky high.

So to recap, nothing around us is permanent and we can’t even “opt out” of the predicament. So is there no hope? Are we doomed to an endless cycle of traumatic relationship collapses and identity rebuilding exercises? No, there is good news to be had. The simple (though far from easy) solution is to base our identity on a relationship that is unshakable and indestructible to the point that it can survive anything – even death.

“But,” you might object, “didn’t you just say that everything around us is impermanent?”

Actually, what I said was, “As far as the eye can see…” Maybe we need to try looking where the eye can’t see.

“Sounds like we are back in ‘Wonderland.’”

Hardly. If you think back, last week we talked about the different reasons that people might have for running a race. One person ran as an expression of who he was as a human being. However that statement means more than simply identifying with a particular skill, which can obviously fade over time. For this runner, it meant that he ran because the skill was a gift that God had given him. Hence, he focused on God and giving Him pleasure by using that gift to the fullest extent possible. So while one gift might fade over time and be replaced with another, the runner’s identity remained untroubled and at peace because it was based on the identity of the Giver, the One who is never ending, and Who is constant.

There is our way forward: An identity that is based on God and His intent in creating us. As I have said many times in the past, whether you are the patient or caregiver, what you are experiencing is not random. There is a point to it all, and that point is to transform you into the being you were created to be.

By the way, as Moses (משה רבנו) discovered at the burning bush, God has a really good answer to the question “Who are you?” He simply said, “I am. I am the One who is.”

In Christ, Amen ☩

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A prayer for when you aren’t sure who you are…

“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 who You are. But today I want to bless You especially for also being the basis for the ultimate reality of who I am. Help me to discern the difference between who I am and the temporary labels that I get from the world. Amen.”

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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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Mary lost her son, a story of Holy Week

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.

This week I’m doing something that I have never done before. You can call it a mindful memorial, a tribute, or just trying to deal with the reality of being surrounded by death from various neurodegenerative diseases – the actual label doesn’t really matter, I guess. On any given day, the various support forums carry a litany of death from a multitude of causes that have nothing to do with viruses, and so unfortunately draw little attention.

These brief notices are typically written by the deceased’s caregiver and naturally talk about how wonderful their late loved one was – which is as it should be. But something can get lost with that approach to memorialization: the caring people left behind. These short obituaries talk about the deceased’s challenges and bravery in the face of adversity, but rarely mention the sacrifices that the caregiver makes to allow their loved one to reach the end of their days with some dignity. Neither is it mentioned that these extraordinary measures are undertaken knowing that they won’t change the long-term prognosis even one single bit.

So this week I want to talk about one particular HD-related death from the standpoint of the patient’s caregiver – his mother. Please don’t see this choice as in any way denigrating the contributions of people with other relationships. Fathers lose daughters, children lose parents, and spouses lose each other, and they all perform noble service.

Rather, my choice of subject to stand in for the hundreds of thousands of caregivers worldwide was simple and pragmatic. It is someone that I know personally, and her son is also the fourth family member with HD that she has cared for.

The mother’s name is Maria and she might be familiar to some of you. She lives in Italy and over the past month I have posted several prayer requests for her and her son Giuseppe. So many of you have responded that Maria was, at one point, left speechless. She thought she was the only asking God to give her strength. Not quite! And for the record, I am incredibly proud of the family we have assembled here.

To make a long story short, Giuseppe had JHD and like so many of his countrymen, contracted the coronavirus. Maria spent many long hours living at the hospital helping to care for him. In fact, at one point she went 48 hours without sleeping or eating, and ended up collapsing on the floor. She said the nursing staff was initially afraid that she had suffered a heart attack, but she was just exhausted.

Then during Holy Week, the end came. Since then, there has been an unending stream of details to be managed and arrangements to be made. As I was thinking about this today (Wednesday, April 15th), I started writing. Even though I never met the young man, I had come to feel very close to him, despite his being on the other side of a very large ocean. So the writing was initially to clear my own head and help deal with my own sense of loss – though, to tell the truth, I felt a bit embarrassed to even mention my feelings.

Eventually, my feelings fell to the wayside and the writing morphed into a series of thoughts on motherhood in general, and Maria’s loving dedication to her family in particular.

I have been thinking about it and it seems to me that, for mothers, raising children involves a long series of “letting go” events. For nine months you carry them in the womb but even here, at the very beginning, they are a separate person, so there is a relationship with the child, a connection. The paradox is that they are at once, in you and yet distinct from you. They have their own gender, their own blood type, and their own heartbeat. While this heartbeat may from time to time synchronize with yours, it is unique.

This point becomes obvious at birth when the umbilical cord connecting the two of you is severed and they can become a fully independent human being. But still, you feed them from your breast and change their diapers. Then one day you have to let go of that connection because they no longer need the same degree of attention. I well remember the poignant moment when my Janet realized that she had just breast-fed our son for the last time. But he made it clear that, while milk was all fine and good, he wanted solid food – and lots of it!

After that, life seems full of letting go events that strain, redefine and restructure the connection: potty training, starting school, dances, dating, graduation, college, marriage, and parenthood – each with its own unique set of letting go moments.

But sometimes something goes wrong with that neat plan, and there are other things that a mother has to let go of. When Maria realized that Giuseppe had the Juvenile form of Huntington’s Disease, she had to learn to let go of his laughter and smiles, and eventually the personable young man that he was. Then in a kind of hellish regression, she had to return to feeding and changing him, and doing her very best to care for his most basic physical and emotional needs. But then, doctors and nurses became involved.

I will always remember the message I got from Maria when Giuseppe was being taken to the hospital. I am just learning Italian, but even without running the text through Google Translate, I recognized the words or phrases for “my son”, “hospital”, “intubated”, and “panicking”. The resulting online prayer request is when many of you became acquainted with her name, and there were dozens of you. (Thank you Pamela at the Huntington’s Disease Prayer Support Group!)

Eventually, in the final stages, Maria had to face letting him go completely in death. But even then, her mother’s love was so strong that she continued hanging on, becoming a living “la Pietà” mourning a son, not of marble, but of flesh and blood. She cradled him, craving one more moment of human contact. Soon even that was gone, as people explained to her about “contagions” and the necessity of cremation. She had to let go of even his physical body. In the end, it appeared that all she would have left to show for a lifetime of love and commitment, was just a few handfuls of ashes.

But no, God does not leave His children so destitute. Maria also has memories: The warmth and intimacy of suckling him that first time in the delivery room. The look of brave determination on his face as he headed off for the first day of elementary school. The pride he showed at graduation, and many, many more treasured moments that “moths cannot eat nor rust destroy.”

But in addition to the memories, God also has promises for the future. Promises of renewed hope and love that can, frankly, be so hard to hear while we are in the midst of the mourning. However, we can be confident that these promises have no “expiration date” and their time will come. For example, as people of faith, we have the assurance that death is not the hopeless end to an essentially meaningless life. Rather, one of the great lessons of Easter is that, as strange as it may sound, in death there is healing. When Jesus appeared to his disciple following the resurrection, He still bore the marks of the crucifixion. The difference was that they were no longer bleeding wounds, they were healed and Jesus was none the worse for wear. And so it is for Giuseppe and all our loved ones: There is no HD in heaven.

But for right now those around Maria are supporting her, and while she is so tired and full of grief that she doesn’t at times know which way to turn, she is not the kind to stay down. The life of a Christian in this world is not about “either/or” but “both/and”. We aren’t confronted with the alternatives of either sinner or saint, or either being faithful or grieving. In both cases, we are “both/and”. Always remember that the opposite of grief is not faithfulness, but rather apathy.

So if you have been praying for Maria, please continue to do so – which if you thinks about it is another case of “both/and”. She is both in need of prayer and already under infinite God’s care. To protect her from total despair, God is continuing to fill her heart every day with fresh hope, and the rod of steel that He placed in her spine means that this time of pain and sorrow will not leave her permanently bowed down.

This loss will not be the end of her, and the testimony of her story is yet another assurance that ours won’t be the end of us either…

In Christ, Amen ☩

A prayer for when you mourn…

“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 wonderous promises. But today I want to bless you especially for understanding and sanctifying our grief. In scripture we see Jesus first weeping at the tomb of his friend Lazarus, and then reassuring the two grieving sisters that in Him there is life regardless of how things look at the moment. And then again, we have Jesus’ reassuring words, ‘Blessed are those who mourn, for they shall be comforted.’ Thank you for the opportunity to experience the grief of separations so we might experience an even greater joy at our reunions. Amen”

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How We Got Here…

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.

My wife Janet and I were married in 1985, and for many years, things were good – which for me was a welcome change of pace. Before I met Jan, I was married and divorced two other times. Someday I may talk about those experiences, but for now we’ll start in 1985 when things were going right. While it was true that we had to move for work more than I would have liked, on the whole, life was good.

Our Wedding Day
Before you knew it, we were well on our way to our “happily ever after”. I had a good job in Ohio, we owned a house, and had two kids (one boy and one girl), a dog and two cats. Then one sunny morning in September 2011, things changed. As a result of 911, my job went away and the only work I could find was in Lexington, Kentucky. This is important because we decided in order to keep the kids in school, I would take an apartment in Kentucky and drive home on weekends. Consequently, I didn’t recognize the changes in Janet for a long time.

All I saw at first was small stuff. Her temper got shorter and she started forgetting things, but the temper wasn’t that bad and we were both getting older. Who doesn’t have “senior moments”? Unknown to me, our son was catching the brunt of the problems. During the week when I wasn’t there, the arguments were getting increasingly irrational, and she would at times be incredibly demanding, insisting that things be done in exactly one way. Plus if Janet asked you a question twice and you didn’t answer it both times using the exact same words, you were, “…changing your story…” and obviously lying.

By this time, doctors were getting involved because Janet had also developed a thyroid condition and (due to the thyroid problem) sleep apnea. In addition, the HD also beginning to cause physical symptoms, like her legs wouldn’t stop bouncing. The Ohio doctors guessed a lot about what the problem could be – some said it was RLS (Restless Leg Syndrome), others said that it was something else. To tell the truth, nobody knew what was going on – maybe that’s why it’s called a medical “practice”.

Eventually, I got a permanent job in Pennsylvania. Because our son had graduated high school that fall, he left for college and the remaining three of us moved on to PA. But by then, the physical problems were getting worse to include choking on food and occasionally biting her tongue.

We eventually discovered the truth when we went and saw a neurologist in Pennsylvania. After running dozens of tests and having them all came back negative, he told us that there was one more disease that we should check. He said it was called Huntington’s Disease and that it was a degenerative neurological condition. He said we should go home and look it up online before deciding to take the test. Through our research we discovered that HD has no cure, is 100% fatal and (to top things off) is hereditary so both our kids could be at risk. We also learned that the average lifespan of a patient after diagnosis was about 15 years.

In the end, we decided to go with the test – which came back positive. That diagnosis was 11 years ago.

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My name is Michael Porter, and that was the beginning of Janet and I’s new road together. Along with the medical changes came realizations that nothing was going to be the way we had planned. No golden years growing old together, no travelling to visit the grand kids – nothing. It was like our entire future had been stolen from us in a moment.

A while later, our son became engaged to a beautiful young woman from Texas. When my future daughter-in-law heard that I had done a little preaching in church, she asked if I would be willing to share a short message at their wedding. I said yes, and began considering what I wanted to say. They were getting married on a Saturday, but not just any Saturday. They were getting married the day before Palm Sunday.

As I read the gospel text for Palm Sunday (Jesus’ triumphant entry into Jerusalem) I was struck by that situation’s similarity to a wedding party. In both cases, there were revelers galore. Moreover, these party goers were all convinced that they absolutely knew what the outcome was going to be. The joyous crowds on that long-ago day in Jerusalem knew that Roman oppression was soon to be a thing of the past; and on October 20th of 1985 my new wife and I knew that we would be together forever – except we were all wrong.

So this is basically what I shared at our son’s wedding: At times like this we happily make plans and promise the future, but the fact of the matter is that the future is not ours to promise. Reality can intrude on our hopes and dreams in the form of illness, death and disappointment. In 33 AD Jerusalem, reality took the form of Good Friday crushing the hopes of political liberation but opening the way for Easter and a far greater liberation than the mere overthrow of Rome. In the same way, we have the promise of Easter that when our hopes and dreams fail, it is because God is brushing them aside to make room for something better.

After the service, the responses to my message were rather muted to say the least. It was, after all, not your typical marriage sermon. It wasn’t happy and uplifting, there were no hearts and flowers, and the new couple’s “sweet forever” was never mentioned. Our new daughter-in-law summed up the thoughts of many when she described it as, “…sort of a downer…”. However, I got a very different response from many others, specifically long-time married couples. As one old gentleman who had been married to his sweetheart for 55 years said, “About damned time somebody told these youngsters what they really needed to hear!”

Often when we hear the word of God being spoken from a pulpit we feel that the preacher has, through study and prayer, acquired some divine understanding of scripture that they are now sharing with us. While that sort of sermon does from time to time appear, the truth is often messier. Thanks to the Holy Spirit, the words that are spoken are often not the same as the words that were written. So in the end, the preacher often needs to hear the message too. Such was the case for Janet and I. Our wedding hopes were lying in shattered pieces on the floor, we needed to hear that God was making room for something better. We needed to learn a new kind of faith – a faith not that the future we have planned will come to fruition, but a faith based on the proposition that we have no idea what the future will hold, but that it will still be OK. We needed to have faith that something was being prepared, even though we had no idea what it was.

In Christ, Amen ☩

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A prayer for days when you can’t see the way ahead…

“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 many gifts, but too often I only thank you for what I know and understand. The truth is that even when I don’t understand the involvement of your hand in my affairs, I can know that your will is there working for my good. Even when I am blind to the blessings that you are preparing for me, I can know that the preparations continue. So I ask you God not to show me your hand, or reveal your hidden blessings. Rather, I pray for the faith to trust in you even when I can’t even begin to comprehend what you are doing. Amen”