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.

❦   ❦   ❦   ❦   ❦   ❦

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 ☩

❦   ❦   ❦   ❦   ❦   ❦

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”

What is Success?

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 seems to be going through cycles where one moment she wants to be left alone, but the next, she wants to be involved in conversations and decisions. In fact, Frannie is experiencing increasing upset over Janet’s “eavesdropping” on conversations and then trying to participate in them – even when it’s clear that she didn’t really understand what she heard. I seem to be back in the mode of getting between the two of them to prevent verbal altercations.

Another thing I have talked about in the past, that bothers Frannie greatly, is Janet’s refusal to use her walker. I have come to realize that short of tying her down, there really is no way, as a practical matter, to stop her from getting up and toddling around the apartment. It strikes me that perhaps refusing to use the walker is her last act of rebellion.

Come to think of it, that word pretty well sums up Janet’s life: “rebellion.” Whether spiritually, politically, educationally or any other way you can name, Janet has always seemed to have her BS detector (on a scale of 1 to 10) hardwired on 11. She has left churches over misbehavior of clergy. Over two election cycles, she worked tirelessly for Perot. Even in her current diminished cognitive state, she still talks about his prescience in seeing where previous administrations were taking the country.

I have written before about how, when she was teaching in public schools, she tailored lessons for individual students. But she also cared about the small stuff. For example, Janet is from Massachusetts and for those of you who have never been there, yes, they do talk funny. But Janet was always careful to model correct pronunciation. In fact, one of the ways I could tell she was ill was if, in response to the question, “How are you feeling?” she would say “mediocah” (mediocre).

But Janet was always a rebel with a cause. She never believed in tearing things down simply for the pleasure of seeing others fail. For her, there was always a reason for her rebellion: to make the world a better place.

❦   ❦   ❦   ❦   ❦   ❦

The post last week talked about what happens to caregivers after they have successfully completed their care mission, and how they can find fulfillment and meaning by contributing back to the community. However, whether you realized it or not, there was a rather glaring hole in that discussion, which I intend to close right now. The previous post just assumes that the caregiver’s work ended in success. However, in the context of caring for someone with a terminal illness where the patient always dies, what exactly does success mean?

  • Kept them safe.
  • Kept them alive as long as medically possible.
  • Gave them “Death with Dignity”.
  • Helped them to be happy.
  • Did the best I could.
  • Kept them out of a long-term care facility.
  • Got them admitted to a long-term care facility.
  • I outlived the person for whom I was caring.

But which, if any, of these goals forms a good basis for determining success or failure as a caregiver for someone with a terminal illness? Before we try to answer that specific query, let’s take a little broader perspective on the matter by considering a common metaphor: The foot race.

Over the centuries, the foot race has repeatedly proven itself as a way of explaining, exploring, and describing the meaning of success. For example, how many times have you heard someone describe caregiving as a “marathon” and not a “sprint?” How many times have you said something like that yourself?

The reason for this popularity should be obvious. Consider: a foot race has a clearly defined beginning (the starting pistol goes off), a predetermined length, a precise end (when the runner breaks the tape at the finish line), and a reward for winning, ranging from congratulatory handshakes and hugs, to formal awards such as this gold medal from the 1924 Summer Olympics in Paris, France. (Why the 1924 Paris Olympics? Patience, dear friends, patience.)

Gold Medal 1924 Paris Olympics
The problem, of course, is that the marathon a caregiver runs lacks nearly all of the things that make a race an attractive metaphor. For example, when did the cognitive problems definitively start? Maybe your loved one had been feeling the effects for decades before recognizing them. And predetermined length? Who are we kidding? They may survive for months, years or even decades. We talked about the lack of a definitive end last week.

Despite all these difficulties, race analogies can nevertheless be helpful by bringing with them a certain intuitive understanding of the situation. But this metaphor has much more to offer than mere vague generalizations. A point demonstrated by a wonderful movie I saw many years ago.

The year was 1981 and the Academy Award winner for best picture was a historical drama surrounding the eighth modern Olympiad, held in Paris in 1924. The movie is, of course, the magnificent Chariots of Fire. Focusing on the lives of Eric Liddell – the so-called “Flying Scotsman” – and Harold Abrahams, you soon discover through the film that in many ways, these two men could not have been more different. Given their differences, it would be tempting (and easy) to cast comparison between the two of them in terms of the good (Liddell) and bad (Abrahams), but the truth is far too complex for that simplistic of a structure.

For example, while it is true that Abrahams was at times arrogant, carrying a chip on his shoulder the size of Big Ben, those personality quirks were not without cause. After all, Abrahams was Jewish, and England at the time was rife with antisemitism. But there was more to the man than that. He also demonstrated the ability to love deeply, and had a reputation for being intensely loyal to friends, his teammates, and his country.

The really interesting difference between the two men is their reasons for running, why they raced. Liddell ran as an expression of who he was as a human being. As he once told his sister, “I believe God made me for a purpose, but he also made me fast! And when I run, I feel His pleasure.” Liddell raced because it gave him a reason to run and express who he was. A hallmark of the pleasure he felt was apparent in his unique running style. As can be seen in archival films from the time, when he crossed the finish line, his arms would be flailing, his head would be thrown back and his mouth would be gaping open in an impossibly wide smile – a smile.

By contrast, due to the daily reality he lived, Abrahams had a very different reason for racing. He once told a friend that his intent for the antisemitic mob was to “…run them into the ground!” Simply running a good race was not adequate: all that mattered to him was winning. He wanted to be able to rub their noses in his success. For him, there was no joy in running, only anger and revenge. But then something, we don’t know exactly what, changed him.

Perhaps it was the realization that winning an Olympic gold medal didn’t feel nearly as good as he thought it would, but instead left him feeling hollow inside. Maybe, as in the film, he witnessed Liddell win his gold medal event and saw on his face another reason to compete – the sheer joy of it. Conceivably, it was something that God worked out silently in the privacy of his heart. One thing is clear: if you read about his life after 1924 and all the things he did publicly and privately, he was a different person.

So what does all this talk have to do with being a successful caregiver? Simply this: I would humbly submit that there are two approaches to caregiving, that mirror the approaches these two men exhibited when racing. Moreover, I contend that we aren’t stuck in one modus operandi. Rather, people can and do change their approaches to the task of caregiving all the time – in other words, we have good days and we have bad days.

So the first approach is analogous to how a younger Abrahams approached running. Here the caregiver sees themselves as being embroiled in a battle, not against antisemitism or bigotry, but a disease. This approach does work, for a while at least. For example, Abrahams’ single-minded focus on winning at all costs, did get him to the Olympics, and it won him a gold medal. But it called for a level of isolated exertion that was ultimately unsustainable. Perhaps this is why so many caregivers die before the person they are caring for does: caregiving as a battle, in the long term, doesn’t work.

As I said before, the problem is that with our race, the beginning is uncertain, the duration is unknown and the end is unpredictable. So what we need is an approach that is more like the way Liddell ran a race. An approach that focuses less on what we are “doing” and more on who we “are.” With such an approach, success or failure isn’t judged at some arbitrary point in the future when the race is done. Rather, the goal is to express who you are and your giftedness right now, today, with every step.

What parent doesn’t find pleasure in seeing their child using and enjoying a special gift they gave them? Yet too often people of faith fail to recognize that God feels pleasure when we make full use of the gifts He has provided us. Like Liddell all those years ago, we can affirm that “…when I run (care/write/program/etc.), I feel His pleasure.” Moreover, we can learn that His pleasure isn’t just a nice feeling that lasts for a moment and then is gone. Rather, we can experience His pleasure as a sustaining force that enlivens us, strengthens us, and lifts us up on the wings of eagles.

Now that, my friends, is success.

In Christ, Amen ☩

❦   ❦   ❦   ❦   ❦   ❦

A prayer for when you are feeling spent…

“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 gifts that you bestow. But today I want to bless You especially for the strength that You give me for today. So often I feel run down and run over. Thank you for not just enabling me to survive trials, but to thrive in the face of adversity. Show me how to feel Your pleasure. Amen”

Brain Drain

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 seems to have made peace with the security cameras. In addition, she has accepted the need to wear the medical alert buttons. So much so, in fact, that she is now reminding me that she needs to exchange pendant for wrist strap or vice versa.

Emotionally, Janet is continuing to grow calmer – even when Frannie gets angry with her for not using her walker. Just today, after weeks of wanting to be left alone, she told me that she was lonely and that she loved me.

Unfortunately for all the gains in other areas, Janet still resists using the walker. This resistance is troubling because, when standing, she is constantly weaving back and forth. But perhaps that it is her final act of defiance to the disease that is killing her. I have the growing conviction that Janet will not be one who slowly fades away. Rather, in the words of Dylan Thomas, she will:

“Rage, rage against the dying of the light.”

From my Janet, I would expect nothing else…

❦   ❦   ❦   ❦   ❦   ❦

First used in the UK at the end of World War II, the term “brain drain” described the flight of European scientists and technologists to North America – typically the US. For example, much of the early US space program was populated by German expatriates who got their start building V2 rockets for the Nazis. Following the first successful launch of a V2 (that landed in London to devastating effect), Werhner Von Braun was heard to comment to a colleague, “The rocket worked perfectly, except for landing on the wrong planet.”

The point is that while the desire to leave a war-torn continent is more than understandable, the effect of this brain drain was to deny European economies access to some of their brightest minds, just at the time when they were most needed.

On the support forums I follow, I see an analogous problem – at the end of their personal “war” against a particular chronic terminal illness (i.e., as soon as their loved one succumbs), the caregiver often leaves the support forum.

Again, this desire is an understandable reaction: after all, people can be exhausted from years or even decades of caregiving. Alternatively, with their loved one dead, perhaps they feel like they no longer belong, or maybe they feel like they have nothing more to contribute. However, regardless of the reason, the choice to leave does have consequences.

The most drastic consequence for the former caregiver is that simply dropping everything and “retiring” can kill you. As a case in point, consider the life of General Daniel “Chappie” James.

Gen. Daniel “Chappie” James Jr.
Gen. Daniel “Chappie” James Jr. (U.S. Air Force photo)
Known for a deep and abiding patriotism that manifested itself in exemplary service to the nation, in 1975 he became the first African-American to reach the rank of four-star general in the United States military. His career spanned from World War II (when he helped teach some of the famed Tuskegee Airmen to fly) through Vietnam. He retired January 31st, 1978 after 35 years of honorable service, at the age of 58. Just three weeks later, he died of a heart attack on February 25th. The consensus at the time was that retirement killed him. As a result of his untimely death, the Air Force instituted a mandatory training program for all retiring senior NCOs and officers to teach them how to be retired.

But, short of death, there are other problems as well: the person leaving could be abandoning a source of support just at the time when they are going to need it most. The type of support you need might change (ever so slightly) but the need doesn’t go away. Others may have a different opinion, but to my mind, caring for a loved one with any sort of chronic terminal illness initiates you into a family with ties that outlast everything, including death – maybe, especially death.

So even though my Janet is currently still alive, I had to confront this same issue as I compiled these blog posts into a book. Specifically, I had to decide what to do about the fact that the story didn’t seem to have an ending yet. In fact, a couple publishers asked me rather pointedly about that narrative “problem.” Specifically, they wanted to know how I could publish a book with no ending?

To answer that question for the publishers (and the readers too) I wrote this in the book’s Epilogue:

… such an ending (Janet’s death) would be, in a sense, totally arbitrary in that it won’t really be the end of the story. In that respect, I am reminded of the war-time words of Winston Churchill: “Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.”

Indeed, as long as anyone remains alive with this sort of disease, there will never really be an end because the world is like a still pond and each life that God drops into it produces ripples. These ripples, in turn, interact and produce unseen effects long after the lives that created the ripples have passed from human memory…

So given all that, how do you specify an “end” that isn’t totally arbitrary?

Like the television signals carrying the original live broadcasts of “I Love Lucy” and “The Honeymooners” out into the universe, the ripples of Janet’s life will continue to expand outward causing new, ever more distant effects. This is why, for myself, I have made the decision to keep writing after Janet’s death and to continue for as long as God gives me the words to say, the strength to type and the eye sight to find the keys (I do not touch type – I’m more of an advanced hunt-and-peck kinda guy).

Finally, I would be remiss if I failed to point out that the loss of participation also impacts the groups themselves in a very predictable way: loss of expertise and knowledge. When someone new joins, they have a few common questions that boil down to some pretty basic concerns:

  • What happens now?
  • What’s going to be the impact on my loved one?
  • How bad will it get?
  • I’m afraid. Is this survivable?
  • What happens to my family?
  • What happens to me?

Only someone who has been through the entire experience can answer all those questions. Only someone who has been through and seen the worst, can with authority say to another, “Yes, you can do this.”

And then moving beyond those basics, there are the hundreds (of thousands) of everyday questions about how to do this, or that. So remember experience brings wisdom, wisdom imbues credibility, credibility instills confidence, and confidence is transformative.

A recurring theme of my writing is that our everyday experiences are preparation for what’s coming. The things that you have endured have been to prepare you for the future. Now is your time.

In Christ, Amen ☩

❦   ❦   ❦   ❦   ❦   ❦

A prayer for when you feel drained…

“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 help You give, the salvation You provide and comfort with which you surround us. But today I want to bless you especially for the opportunity to share with and comfort those who are just starting on the road that I have been treading. Please show me how to give them hope and share with them a measure of the strength that you have given me. Amen.”

… but what do I need?

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 is the beginning of Lent, so perhaps appropriately, it’s been a rough week. Early in the week, the perseveration was running wild. Tuesday she was calling me every 5 minutes at work, angrily demanding (in the same sentence) that I both save the marriage and give her a divorce. My boss noticed and was understanding when he called me in to talk about what was going on, I just sat in his office and cried. The result was that he let me work out of the house two days this week so I can be here with Janet. She seems much more at ease if she knows that I am in the house, even if I am upstairs working.

After our “meet and greet” at the Thai restaurant in downtown Boston, the first real date for Janet and I was at a family party. Janet had a niece that was born on Christmas Day so Janet invited me to go with her to the combination Christmas and Birthday party at her younger brother’s house. Shortly after we arrived, Janet got spirited off for some family matter so I was left standing uncomfortably alone in the middle of the living room. A short while later a tall, attractive blond lady that I later found out was Janet’s sister-in-law Marilyn came up to me.

“So you are Michael.” A statement. “Have you and Janet been dating long?”

“Uh no,” I replied, smiling nervously, “This is actually our first real date.”

Marilyn looked at me hard and said to no one in particular, “For a first date she brings him to a family gathering. My God! She’s brave!”

And with that she turned on her heel and walked away.

Y-e-a-h… Welcome to the family…


Sometimes what you read in this space is about what Janet and I have been through, and sometimes it’s about what I see online on the support forums – this one is a mixture of the two.

It seems like I have been seeing a lot of comments lately from folks that are feeling guilty, and the source of that guilt is very familiar. The post I saw that really sort of crystalized it for me was a woman whose husband had become unable to express himself romantically and she had two questions:

“Is this normal in HD, and am I selfish for still wanting things to be the way they were before?”

My answer was short and sweet:

“Yes it is, and no you’re not.”

The longer (more piquant) answer to her second question is that grieving the loss what you had is not, of itself, selfish. Becoming a caregiver doesn’t mean giving up your rights to have needs. Rather, even in the midst of the most trying of times, human needs still have a place. For example, consider one of the events that occurred while Jesus was hanging on the cross. He looked down and saw His mother with His disciple John. Even in the midst of what could be argued was the paramount point of all human history, He looked down and said to her, “Woman, behold your son.” and then to John, “Behold your mother.”

Devoid of any deep theological or philosophical meaning, the point of those statements was simple. A widow with no sons in that culture and time was in many ways essentially a non-person. She had no name, no standing in the community and no resources. We have to be careful here to not attribute to Mary too much spiritual insight. There is no evidence that she had understood the prophecies that Jesus made about His death and resurrection any better than the disciples did – remember she showed up at the tomb Easter morning expecting to find a dead body.

So you know she had to have been thinking about it. “My husband is dead, my son is dying, what will become of me?” Hence, even in the middle of “making all things new”, Jesus took time to deal with the very practical, very human need of His mother by making sure that she still had a place in the world.

Returning to the present for a moment, there would also be those who would say to caregivers, why are you worrying about your needs? Don’t you have faith in God? Real nice folks, eh? You are doing your best to hold things together and they give you the Christianized version of the “Just snap out of it, and cheer up!” speech. But again, being needy is no more a lack of faith than it was selfishness. Remember the shortest passage in the Bible: Jesus wept. More than anyone alive then or now, Jesus standing at the tomb of His friend Lazarus understood the situation, He knew where Lazarus was, and He knew that Lazarus truly was in a better place. But He also could see and feel the grief of Mary and Martha who, more than anything in this world, needed their brother back. So Jesus wept: for Mary, for Martha, and perhaps a bit for Lazarus too.

In our humanness we have needs, we miss things, we long for what was and what was good, and there is nothing wrong with that. The good news is that support and comfort is available, that is why God gave us each other. But for me, that doesn’t mean that these new resources for comfort and support replace what I had with Janet. In the first place, they aren’t sufficient to fill a void so large and in the second, I wouldn’t want them to anyway. Those are precious memories and feelings that I don’t want lost or replaced. At some time in the future after Janet dies I may or may not find someone else with whom to share life, but if I do, that relationship won’t simply be a replay or continuation of what Janet and I had. It will be something new and unique that God creates for us.

So although the support we can give to and receive from each other now has its limitations, it is nevertheless tremendously valuable, because what it can do is help me survive the pain and fear that I am experiencing right now.

The other thing to remember about the pain of neediness is that injuries take time to heal. This point is obvious when someone is cut, bruised or breaks an arm. Then people say, “Ok they are injured. They need to take it easy for a while.” Unfortunately, though, when the injury is to the person’s heart and spirit, the tune is very different. They expect the healing to be instantaneous. Just say a prayer and it’s all handled. Except that it’s not. Consequently, people are often reticent to open up about what they are experiencing for fear of being judged as “faithless”.

For myself, I’ve had to fight my way through these feelings in a very public way: I’ve been writing about them for the past three weeks and every Sunday morning people were expecting an update. During this time I have learned volumes about being steadfast by sorting out exactly what “loyalty” means. I have learned that living a spiritual life is anything but formulaic. I learned that at times truth and honesty can be risky, and that healing in itself can be a painful process. But the biggest thing I learned was that this process takes time. God doesn’t often snap His fingers and heal broken bones, or broken spirits.

But, even in my pain, I have faith because I learned a long time ago that in my life journey, nothing happens by accident. Instead God assures me that there is always a purpose behind what I am experiencing: growth. As a parent, God wants me (and indeed, all His children) to grow stronger and more capable over time, and so be as prepared for life as we can possibly be. However, sometimes gentle words and persuasion won’t get the job done. Sometimes the future ahead of us is going to be so hard that, to be prepared for it, we have to go through a kind of spiritual “boot camp” to toughen us up.

For me, a key part of that toughening up was when my Mom had a stroke while visiting family in Arkansas. An uncle had her admitted to the nearest hospital with a stroke unit – which it turns out was Mercy Hospital in Fort Smith. I drove up from Pearland and arrived the day before a major snow and ice storm that totally shutdown the city for about a week. While Mom was in the hospital, there were a lot more bad times than there were good. Mom was often hallucinating and one night over the course of an hour she mistook me for her father, my father, both of her brothers and a stranger that was trying to attack her.

From the time I walked in the door of the ICU, I was assumed by the doctors and nurses to be part of the care team, which in one sense was really great. Of course, it would have been even better if I had had some idea of what was going on and what needed to be done. As it was, what I went through was not unlike learning to be an infantryman while storming an enemy beach.

After a couple very long weeks where I literally lived at the hospital with Mom, they determined that she was stable enough to transport down to the Houston area. As I was driving back to make arrangements for her here in Pearland, I was totally exhausted. Then God interrupted my thoughts and told me, “Of course you know this is just Round 1”. After thinking about the statement for a moment, I understood. After Mom, Janet would come next. Janet would be the one suffering from dementia. Janet would be the one in pain. Janet would be the one confused about where she was. Janet would be the one frightened and angry. Janet would be Round 2.

And I’m now praying there is no Round 3 in this bout.

In Christ, Amen ☩


A prayer for when you are needy…

“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 all the ways in which You provide for all my needs. But today I want to bless You especially for even caring about my needs. You certainly would not have to, but in Your immeasurable love, You do. Please show me how to care for the needs of others as You care for mine. Amen”

Who me, an Advocate?

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.

Last Sunday, I spent a chunk of the afternoon on messenger talking with my sister — nothing unusual there. What we talked about was the post that went live on the blog that morning, which if you haven’t read it yet, can be found here. The point of the conversation was the prayer. Margie was curious about whether I intended it to be purely personal, or would it apply to everyone.

I think that part of the matter might have been my usage of the word “advocate” which I realize, in retrospect, is a word that is typically used to communicate very specific and formalized responsibilities. Derived from a Latin root that is essentially a translation of the Greek word παράκλητος (paráklētos) the word refers to someone that is called, or summoned to stand beside you for support — often in a legal sense. For Christians, the most well-known use of this word is when Jesus used it to describe the coming Holy Spirit.

But I want to step back for a moment and think about it from a slightly different perspective. For my starting point, I’ll take a famous quote from the Shakespearean play Twelfth Night:

“Some are born great, some become great, and some
have greatness thrust upon them.”

It struck me that if you replace the words “great” and “greatness” with “advocates” and “advocacy”, the result is a pretty good description of the core of what it means to be an advocate.

“Some are born advocates, …” Most of us have known people that seemingly from the time they were born, realized that their place in the world was to stand by others and speak for them. We typically think of these folks in terms of being social workers, lawyers, or perhaps members of the clergy. But I would assert that there is another side of advocacy. Sometimes words are not enough. Sometimes actions, even strong actions, are required to “stand by” another.

Consequently, advocates are sometimes seen wearing flak jackets under desert brown or blue uniforms. Sometimes, to do their work, advocates have to don green flight suits and prepare to fight a war that is unthinkable, with the goal that it remains unthinkable. Sometimes advocates rush to be the first to respond to a tragedy so they can perhaps snatch some remnant of life from the jaws of death. Advocacy is not just about supportive words…

“…some become advocates, …” Here, we need to consider the biblical story of the Good Samaritan. We have no idea of what was going on inside the Samaritan’s head when he saw the man beaten by thieves and left for dead. Clearly, he could have crossed over to the other side of the road, like the religious men who had come by before him had done, and just kept going.

Instead though, Jesus says that he “took pity on” the man who had been attacked by robbers and so, in that moment, chose to become his advocate. A choice, by the way, that cost him time and money, no doubt disrupted the day he had planned for himself and could even have put him in added danger as the robbers might have still been in the neighborhood. Moreover, he happily took on the responsibility to see the job through to the end by making arrangements for settling any subsequent debts when he returned: more time, more money, more inconvenience.

“…and some have advocacy thrust upon them.” I want to look at this last situation in a bit more detail because it should feel familiar to anyone that is a caregiver to someone with a chronic disease. I don’t know about you, but nobody ever asked me if I wanted this job. Nobody ever said, “Your wife is going to get this horrible disease. Oh, and by the way, you get to watch her die a little more every day. So, if you could help out, that would be grea‑a‑a‑a‑t.”

The job that gets handed to a caregiver is massive, uncomfortable, long and so dirty that even Mike Rowe would think twice about taking it on. And it’s certainly not fair that we have to do these kinds of jobs alone or with too little support from families and friends — or even adequate training for what we need to do. So I would assume that we are in agreement that the life of a caregiver largely sucks. So what do we do? The truth is, the sun will come up tomorrow and we will have to do something.

A number of years ago, I went to a seminar where the leader called up to the front someone from the audience and held out two ice cream cones: one vanilla, one chocolate. He then instructed the person to choose one. The participant got the ice cream they picked and returned to their seat happy. The leader now repeated the exercise with a different volunteer, but this time only held up the one remaining ice cream cone, but he repeated the same instruction: “Choose one.” The result was a spirited conversation (read: argument) about the nature of choosing.

The point of the exercise was to illustrate how people have no problem choosing if they see alternatives, as when they can choose between vanilla or chocolate. However, problems arise when only one flavor is available. We don’t see that as a choice. Rather we devalue it as simply being all that’s left. Consequently, we derive no joy from what we do have, after all who gets excited about making do with the leftovers. Moreover, we can begin to feel pretty resentful and angry toward those enjoying what we don’t have, or who we imagine are enjoying what we don’t have. I can remember nights driving home from work obsessing about the smiling people in the cars around me and resenting the happy homes that I imagined they were returning to.

In the movie “The Passion of Christ” there is a powerful moment when Jesus, beaten and abused, embraced His cross with quivering hands as though it were the most precious possession He had in the world – which of course, it was. At that point, there were no options left available to Him. There was no choice to “go to the cross” or …

All that was left was the cross, and as an example to us Jesus chose it, embraced it, and created from it the best possible Good News.

I hope that you see where I’m going with this unfortunately autobiographical tale: As caregivers, we can easily become trapped in a sense of hopelessness that leads us to feel angry and resentful of those around us who are living “normal” lives. That anger and resentment, in turn, bears fruit in the form of a bitterness that convinces us that, in reality, we are the real victims of this disease, not the person dying. And this victimhood, is the final link in a vicious loop that feeds on itself, solves nothing and makes everyone involved in the situation more miserable by making us even more angry and more resentful.

The only way to break out of this death spiral — I call it that because it will kill you — is to choose the situations in our lives in which there are no options (in biblical terms, “our cross”). When in this way we not only, take up our cross, but truly embrace it, we discover that a joyously new and miraculous possibility emerges: The possibility of regaining just a tiny bit of that perfect Eden experience where life wasn’t supposed to be governed by choices between good and evil, right and wrong, or even vanilla and chocolate. We begin to realize the possibility of living our life of service immersed in and infused with the love of God. We can discover that in this midst of this broken, fallen world, God can create for us a holy place where truly, it is all good…

In Christ, Amen ☩


A prayer for when you’re out of options…

“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 bounty of Your love. But today, I especially want to bless you for making my gift of standing up for others into a way for me to experience a foretaste of Heaven. Please give me eyes to see my own calling, and the strength to complete what you have set before me. Amen”