Posted on

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”

Posted on

Rules and More Rules

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.

To get us started this week, let’s hear from the ’70s Canadian group, The Five Man Electrical Band.

Sign, sign, everywhere a sign
Blockin’ out the scenery, breakin’ my mind
Do this, don’t do that, can’t you read the sign?

Those words are the chorus to their 1971 hit song “Signs”. I’m bringing it up because these words highlight our cultural/global dependence upon rules. Of course this tendency is nothing new. In fact, rules go back to the very beginning when God told Adam and Eve the one thing that they were not allowed to do, to wit, “Do not eat from the Tree of the Knowledge of Good and Evil”.

I can’t image the number of words that have been expended over the centuries in attempts to fully explain that passage — and I am certainly not going to definitively resolve the matter with my poor ruminations. But one thing that always stood out to me is the inclusion of the word “Good” in the prohibition. Why would God want us to not know about things that are good? But I believe that question misses the point. Instead, I think that in that early innocent time, God wanted to spare us from was having to know the difference between good and evil. God wanted us to know good without an alternative, good that was unidentifiable to us as water is to a fish.

Unfortunately, we all know how the story turned out. Our ancestral parents disobeyed the one rule they were given, and then to make matters worse, when they were found out, they responded with recriminations rather than repentance. Adam, even tried to lay some of the blame on God! In the end, the knowledge of good and evil became for us a bell that couldn’t be unrung, and need for rules to govern our behavior entered the world.

Later, God gave Moses the Ten Commandments. But people being people, the Israelites immediately started asking for “clarification” of what this rule or that, really meant. Soon God’s simple commandments turned into a list of no fewer than 613 carefully crafted rules that you, literally, needed a lawyer to interpret for you.

By the time Jesus came along, even some members of the religious establishment realized that things were getting out of hand so they began the intellectual exercise of ranking the importance of the various rules by trying to identify the greatest of the commandments. During His conversation with a group of religious leaders, this enquiry gave Jesus the opening to whittle the rule count back down to just two:

  1. You shall love the Lord your God with all your heart, soul, and mind
  2. You shall love your neighbor as yourself

Very good rules indeed. Unfortunately, this moment of clarity didn’t last long. Rather, people (again being people) continued compiling their own lists of rules — and trust me, today there’s a lot more than 613 of them.

Although a rule-based society, can be troublesome for anyone, it is especially problematic when you consider the various “Alice in Wonderland” aspects of taking care of someone with a neurodegenerative disease such as HD. For example, of late, there has been a lot of conversation on the various support forums, dealing with the trials of applying for disability services. I have noticed a few things that most of these conversations hold in common.

First, the experiences are all remarkably similar, regardless of the country where the patient lives or the disease involved.

Second, the people overseeing the process are bureaucrats that have as their legally mandated role, not to help people get the services that they need, but to ensure that the “unworthy” are kept out.

Third, anyone that doesn’t meet the rules for the respective agencies are by definition unworthy and therefore bad (and possibly, criminal) people who are trying to sponge off the hard-working taxpayers and/or beneficent government.

The problem here is that rules create their own reality. For example, if you have a rule that defines a disabled person as being someone suffering from a disease on the official list, but your disease isn’t on the list, you aren’t disabled. It doesn’t matter if you can’t walk, or talk, or think rationally. It doesn’t matter that you have to wear a diaper and have no short-term memory, you are officially deemed to be able-bodied and so are expected to go out and get a job. I have read this same story coming out of the US, the UK, Ireland, Australia and even (especially?) Bulgaria.

For what it’s worth, I personally have memories of trying to get SSDI payments for Janet when HD wasn’t on the list. Even now, in the US, we are still struggling to get HD to a point of full parity with other diseases.

Then there is what we do to ourselves with rules over issues like suicide. I believe that the current sorry state of affairs exists largely because nobody likes to talk about suicide. The medical and psychiatric professions don’t deal with it well (perhaps because they see it as failure?). Families try to ignore, and hide, suicide due to the stigma attached to it. And the church, which should be a place of refuge and hope, is just as likely to be the place where you find rules that condemn the suicide to eternal damnation in the “fires of hell”.

But let’s be honest, it just isn’t that simple. My Janet can’t swallow without choking and is contemplating simply not eating again, ever. She has been fighting this disease for 11 years and has never wanted extreme measures used to maintain her life. Consequently, she believes that if you can’t even eat that is God telling you that it’s time to come home. Who am I to say she’s wrong? Where am I to draw the line between what is “justified” and what is not? What even gives me the authority to be drawing any lines in the first place?

It may have been there, but I don’t remember promising to, “Love, honor and draw lines until death do us part.”

Finally, we need to look at how rules can even impact the support that caregivers can receive. I have shared in the past that there was a time when Janet would get over the top, angry and violent. During one of those episodes, Janet grabbed my arm and dug her nails in so hard, that it broke one of her nails and left me with 4 bleeding cuts across the top of my arm. Not knowing what else to do, I called my pastor and started to tell him what happened. Before we got very far, my pastor interrupted me.

“Mike, you need to understand something. If your are about to tell me that Janet did something to you that broke the skin and caused you to bleed, I am legally bound by the laws of Texas to call the police and report it. Janet will be arrested.”

To say I was dumbfounded, would be putting it mildly. I thought this is the kind of intrusion into pastoral relationships only occurred in totalitarian countries. So after thinking for only a moment, I thanked Pastor for his time and hung up — we have never spoken about it since. In fact, we don’t talk about Janet’s condition very much at all.

Now believe me, I understand the supposed point of the Texas law, but I also fundamentally don’t give a damn about the state’s sanctimonious justifications. I know that Janet didn’t need or deserve jail, she needed help, but going forward with this so-called “pastoral counseling” while the state was in the room monitoring the conversation would have ensured that she got the first right away, and the second only later, if at all. It would have all depended on some bureaucrat agreeing with me about what Janet needed. So I had to ask myself, how much do I trust bureaucrats? And my answer: “About as far as I could throw them…”

Although my choice might not have been the best decision in the eyes of some, it is the one I made, and I would make it again because, to me, it satisfies Jesus’ second rule. But even so, I would not recommend it as a blanket solution, and I would certainly not judge anyone for making a different choice. However, I guess, in the end, that’s my real point.

Good rules serve as metaphorical guard rails along the sides of the road, that provide the room for reflection and prayer to determine the right path. Bad rules are like checklists that work to produce a result that conforms with what the rule’s author desires. To hell with what you or your loved one really needs — let alone what is the right thing to do.

This conversation about rules even applies within the Church. Different groups have different rules — the function of which is often to differentiate themselves from the heathen worshiping across the street who only, “call themselves Christians”. By the way, I haven’t mentioned it before, but I worship in a Lutheran congregation, so as a Lutheran I am well-aware of at least one glass house that is down range for the rocks that I am throwing…

The bigger problem is that in the world today, this attitude of rule-based spirituality is literally getting people killed. Persecution of people of faith, and Christians in particular, is up dramatically across the globe. Unfortunately, we don’t hear about it nearly enough because comfortable First World churches rest secure in the knowledge that the injured and dead aren’t really “one of us” — since when did that matter anyway?

Good rules are about prayerfully discovering God’s intent for a particular set of circumstances, like say you have a man that converts to Christianity in a culture that allows multiple wives. What should be the church’s response to his “extra” wives? What course of action would conform to the rule, “…Love your neighbor as yourself…”?

Bad rules are about social engineering and fitting every circumstance and every one into the same one-size-fits-all box, whether that box be secular or religious. No grace, no mercy, no justice, no mitigating circumstances — just the rule, the whole rule and nothing but the rule.

In Christ, Amen ☩

A prayer for when you feel boxed in…

“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 spiritual freedom that I enjoy. But today I want to bless you especially for not creating the kinds of rules that we do. We create rules that categorize and segregate people. You create rules that bless, guide and direct people. Thank you too, for showing me that regardless of how many times I break the rules, I can always depend on your grace and mercy. So please Lord, let me see others as You see them. Give me the courage to speak up for the oppressed and weak, and I humbly ask that you would bestow on me the privilege of being an advocate for them in the world. Amen”

Posted on

Reaching Further Out, #2

One of the things that I have recognized the need for is a place to expand the scope of what the blog talks about by adding supplementary posts covering other material that is related to the weekly updates, but which don’t fit well into those conversations.
This is one of those additions.

I had not originally planned to have a follow-up for last Sunday’s regular post, but earlier this week I read something online that changed my plans. What I saw was a Facebook post from Corrie Harris on an HD support forum. It was so good and to-the-point that I knew I had to give her words broader exposure. So here they are. I have touched up the formatting a bit, and fixed a couple misspelled words, but the heart, love and message are all Corrie’s:

In Christ, Amen ☩

01/04/2020 00:40

So, I have been contemplating whether or not to type this out and hit the send button — or just not post and continue to suck it up.

There is a scripture that says, “…Rejoice with those who rejoice and weep with those who weep…” I don’t know how many years I’ve been on the Huntington’s support group pages and have known each of you, but I have known a few of you for over 5 years, all online. We get close because we are all going through similar things. You were and still are my ONLY support. My only cheerleaders. The only place I go when I want to vent or rejoice. Until about 18 months ago, most of my time online was spent either in questions, research, agony, complaining, or being stressed out of my mind by my husband Richard’s HD symptoms and new-found personality.

Many of you have been there for me and I will always appreciate each one of you for that. Your presence reassured me that I was not alone in my pain. But now, with thanks to God, a better HD team, better meds for Richard, and an absolute change in my own attitude and heart, that season has melded into a new one. I see my husband, and the marriage covenant in general, differently. Things are now in the “happy” and “going good” zone, but I still feel a little alone here in my JOY.

I think it has bothered me for a while, but I couldn’t put the exact words to the emotions I was feeling — now I think I understand. I realize that reading a post saying, “I’m having a good day.” can be hard to read when things are falling apart in your own life. I know how hard that can be because I have been on the other end of that relationship!

But, I now realize that the JOY and the good times, days and moments are equally as important to share, so we can rejoice with and encourage each other. Frankly, too many caregivers suffer alone and die early deaths because in the end they are undone by the disease they are fighting. Without encouragement, the tragedy, heartache, anger and pain of this disease sucks the life out of us.

A spirit of complaining and drudgery does NOT help any of us. In fact, it kills us, and it kills our families. It makes it such that our children never want to come home for the holidays or even to visit. I have not handled all of these things well in the past, so I guess more than anything I am just wanting to say that we need to celebrate each other as much as possible, and to not forget that laughter and joy is excellent medicine. Love is a healer and hope gives LIFE.

I have avoided this group for a bit because (as I said before) I was feeling isolated due to how well things were going. But now I’m back and I’m putting out these honest thoughts in hopes that I can help to build an authentic community that is healthy and helps to produce life-giving and long-lasting friendships. This disease is brutal and we all need friends, especially friends that understand.

By the way, I celebrated our 32nd wedding anniversary today by posting the news on Facebook. Richard saw the post and liked it, but there was no other response. I haven’t had a gift, a card or even a real hug in nearly 5 years. Richard can no longer provide those things, and that breaks my heart. For many years I was selfish and angry and could not see the difference between the HD and him, but now I do. Lord, have mercy on me for when I didn’t! Richard would love me back if he could. I know it.

Corina

A prayer for when you are having a moment of clarity…

“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 clarity that you bring to my life. But today, I want to especially bless you for the clarity of understanding that I now have, as fleeting as it may be. In scripture, you told Abraham and his descendants to set up monuments or institute holy days so they will remember Your goodness and blessings. Lord, please be a living monument in my heart. Never let me forget the lessons that I have learned, or the perspective on life that you have brought me. Amen”

Posted on

Letting Go…

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

Resuming where we left off last week…

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

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

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

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

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

Unfortunately there was one small problem with that approach:

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

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

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

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

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

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

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

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

If only…

If only…

If only…

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

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

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

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

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

In Christ, Amen ☩

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

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for your timeless love. But today I want to bless you especially for being by my side throughout the troubles of life. Please give me the faith to not reflexively obsess about past sins that I have confessed and You have long-since forgotten. Teach me to always “face front” as that is the only way that I can see where you are taking me. Amen”

Posted on

Semper Prorsum

One of the things that I have recognized the need for is a place to expand the scope of what the blog talks about by adding supplementary posts covering other material that is related to the weekly updates, but which don’t fit well into those conversations.
This is one of those additions.

So we come to the end of the Year of Our Lord 2019 — which is also the end (though it doesn’t seem possible) of the second decade of the 21st century. As has become customary for this time of year, I want to take a few moments to talk about the changes that the last year has wrought in my life.

2019

The end of last year and the end of this one could not be more different. A year ago I was, to be frank, foundering. I felt cold, cynical and what writing I did dripped with dark sarcasm. Janet was constantly angry, confrontational and critical, and there didn’t seem to be any hope and no future.

When someone asked me what I was going to do after Janet died, I told them that I had absolutely no idea because I hated everything about the situation that I was in. I told someone once that with my luck I would die only to discover that the Catholics were right about purgatory and I still had 15,000 years more to go before I got to Heaven.

On a personal level, I likewise felt very much adrift. On the one hand, I dreaded the idea of being alone, but on the other, I felt beat up and wondered who would ever want to be with me. I even wondered whether it was even fair for me to consider “inflicting” myself on someone else. I felt like damaged goods: a dented, expired can of Spam — which is to say something people aren’t too excited to have when it’s new, and when it’s not… Yeah, you get the idea.

While work was still somewhat fulfilling, even it had starting to drag on me. I had always assumed that retirement was for other guys. I had even told people that I would stop programming and retire when, “…they pried the mouse out of my cold, dead fingers.” Now I just didn’t know, but I also didn’t know what else there was for me to do.

For most of the year, one day followed another, endlessly gray and undifferentiated.

But I guess at some point I was finally ready to hear what God had to say, because things began to change. Bit by bit, through a friend from church, prayer and of course my sister, I began to see a light at the end of the tunnel, that I was pretty sure wasn’t the headlight of an oncoming train. As I travelled on, the light slowly got bigger and bigger, and I could see that the track I was following led out of the tunnel and wound around a bend. While I couldn’t see where the track led, that didn’t seem to matter anymore — it led somewhere, and that was all that was important.

What really made the difference, though, was you folks on the support forums. I initially got on the forums as a way of letting people know about the blog. I started out with just the Huntington’s and Juvenile Huntington’s groups but quickly branched out to others. The important thing was that I realized that whether the group was for HD, JHD, PD, Alzheimer’s, mental illness or dementia, caregivers all had similar challenges.

By reading your stories I got a sense of perspective on my own troubles. I saw that Janet could have been much worse, and I needed to spend more time being grateful and less time complaining. Moreover, I realized that I had more to contribute than just writing the blog. Things I had learned the hard way could help other people, so I began participating more. After experiencing the results from supporting and praying for people as they work their way through their pain and trials, I saw my load got a little lighter too.

Which reminds me, one of the things that that has amazed me is that since this blog went live 7 weeks ago, there have been over 2500 page views, by 1290 visitors, from 35 different countries. I am in absolute awe. Thank you all so much! I wish I could hug all 1290 one of you!

2020

Well, that brings us almost up to date. Next Sunday will be the last time where I will speak in the past tense. After that post, the blog will be about what happened that previous week.

So what will we talk about this new year? Beyond a few obvious things like, at some point, Janet will die in 2020, I really don’t know, but I promise you this, we will always be moving forward. Which, by the way, is what the title of this post means: “always forward”. When you are a warrior for God, one of the things to remember is that He doesn’t back up, or give ground. Ever.

In closing, I love you all, and thank you for your prayers and blessings.

In Christ, Amen ☩

One last prayer for 2019…

“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 how you empower us to reach out in love to others. But today I especially want to thank you for this year. Although there have been hard times, I can nevertheless see your hand guiding and directing me. Teach me to love you more deeply, trust you more completely, and follow you more speedily. Amen”

Posted on

Unexpected Support…

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

Resuming where we left off 2 weeks ago…

With the new medicine things are much better. So much so, in fact, that even Janet recognizes the change. To her though, it’s because I am doing much better and acting more responsibly – OK, whatever.

One of the consequences of her clearer head is that she is more aware of her own condition: the stumbling, the choking, the weight loss and general weakness. In about a year, Janet has gone from approximately 185 lbs down to 115 lbs. A major cause for this weight loss is her inability to consume enough calories.

She frequently aspirates food when eating and chokes things up. If things continue like this, it is only a matter of time before she contracts aspiration pneumonia, which will kill her. But that isn’t going to happen. Jan has decided that if you can’t eat, that is God telling you that it’s time to go home. Originally, she wanted to stop eating immediately and let herself die. However, after talking to our son, she has decided to try to make it to Christmas so she can see him and his family one more time.

But I didn’t know how to handle all this talk of death – of course I have known it was coming, but this discussion makes it feel like we’re setting a date. In desperation born out of being scared witless, I first located and then wrote a letter to an old friend named Margie that I had lost contact with almost 5 decades ago (she was 15, I was 18). Writing her is crazy, right? Well, I said that I’m desperate.

So why pick Margie? Two things really. First, I don’t know why, but her name has been buzzing around in my head for several weeks. Second, I remember her as a young Christian woman that was always very positive, joyful and optimistic – all adjectives that are missing from my life right now. I need encouragement and support.

My original plan for the letter was to just let her know what was happening and ask for a little encouragement and perhaps advice. That idea, however, only lasted about 2 paragraphs. After that, the letter rapidly degenerated into an emotional core dump. In the end, I opened up my heart and just let pour out onto the keyboard all the pain, guilt, fear, upset and disappointment that I had been experiencing for the past few years. I mailed the letter the next day knowing that the most likely scenario is that I wouldn’t hear anything back – I mean, who remembers after 47 years, somebody they dated for a couple months when they were a sophomore in high-school?

What’s really interesting though is that prior to writing that letter I felt mentally, spiritually, emotionally and even epistemologically constipated. I was so plugged up, I couldn’t write and felt hopeless. One of the side effects of just writing the letter is that I am feeling unplugged and have begun writing again.

…A Week Later…

Well I guess miracles do happen! I got a letter back from Margie today and, as predicted, she doesn’t remember me, but she wrote back anyway because she said I put enough detail in the letter that it was clear I remembered her. Still, I can’t imagine what she must have thought reading that letter the first time!

Since Margie wrote back, we have started chatting using instant messenger. She now lives in Indiana, is married to a pastor (they just celebrated their 44th anniversary) and has 8 children, 18 grand-kids and one great-grandchild. I am also glad to report that, after I sent her an old high-school yearbook picture of myself, she now remembers me. More importantly though, she is becoming a great source of support for both Frannie and I. In fact, she has become for me something that I never had, and am only now realizing that I missed: a sister. Growing up, I had a little brother, but sisters are an entirely different thing!

For example, she has a real gift for seeing my blind spots – and harbors not even so much as a single qualm about telling me where they are. (I wonder, is this how all sisters are?) She likes to say that from her perspective, she can see the forest, while I tend to concentrate on the trees. The best part though is that we can pray for each other in ways that I find hard to explain. Despite the fact that I am in southeastern Texas and she is in north-central Indiana, our online communications feels like we are just sitting together talking and praying.

Similarly, Frannie and Margie have started to talk regularly on video chat. When Janet passes Frannie will be needing someone to help fill a void in her heart – someone like a new aunt.

In other news, someone (I don’t remember who) said something the other day that gave me the idea of writing a poem to Janet highlighting our struggles through HD. The result is titled, We Got Through it Together. When the time comes, we will use the linked version in Janet’s funeral/memorial service.

An additional side note is that Margie has challenged me to submit the poem to Christian publishers. My idea is to turn it into a kind of flip book that caregivers and patients could read together as an affirmation of their love. In addition to HD, it would also be applicable to patients with Parkinson’s and Alzheimer’s, as well as other conditions such as terminal cancer.

Since then, I have written a couple other things that I sent to our pastor for inclusion in the church newsletter. It feels so good to be writing again!

Sometimes, there is a lot to be said for the metaphorical “Hail Mary” pass where you throw – in my case, a letter – downfield and just hope that something good happens. I think that the key to a good “Hail Mary” pass is that you don’t have any preconceived ideas of what a good result would be. As I said above, I fully expected to get no response at all. After all it had been 47 years, and we had just been kids. I think maybe that is why I got the results that I did from just writing the letter. Communicating what I was feeling was cathartic in and of itself. Still, I thank God that He directed me to someone who has been able to give me and my family the friendship and support that we need. But a valid question is, why did I have to write a letter in the first place? Wasn’t there someone locally I could have talked to?

Well, yes and no.

When you are grieving, communications can be a trek across a field littered with landmines. On the one hand, you can feel embarrassed that you are asking for support. Maybe asking for help feels, to you, like a weakness, or you are afraid of disappointing or alienating people by being needy, or maybe you’re male. I know one of the battles that I still have to fight is the feelings of loneliness that I at times experience. However, since starting this blog it sometimes feels hard to ask for help because I feel like I’m supposed to be helping others. (To the ladies reading this, know that feeling reticent to ask for help is a very “male” reaction that I believe is built into our DNA, so don’t try to buck the trend – just work with it.)

Past disappointment can also play a role in not asking for help. Who hasn’t had the experience of having someone tell you that they, “…will be there for you…”, only to have their support evaporate when you need it most?

Then also, people can be judgmental when they see you struggling with a load. Perhaps they don’t agree with the original relationship or didn’t like the person that you lost. Just because someone else thinks, “…you are better off without them…”, that doesn’t mean you don’t, or shouldn’t, grieve the loss.

And then there is the worst kind of rugged individualist that can remember in excruciating detail going through something “…ten times worse…” and yet they “…didn’t go around whining about how tough life is…”. Such monologues typically end with references to “boot-straps” and the need to pull oneself up by them.

Finally, being alone and grieving can put you into a category that a lot of people don’t know how to handle. For example, someone told me about a young widow with two small kids. One of the things that she had to deal with was people (in church!) assuming that either she was divorced or the kids were illegitimate. After losing a spouse you can feel like you fundamentally don’t fit in. You had always been half of a couple, but by yourself you don’t feel like you belong anywhere. I was talking to our pastor a while ago and he told me that many widows stop coming to church because they say that being in church reminds them of the funeral. I wonder how many really stop coming because they don’t feel like they fit in anymore?

The thing is, there can be lots of reasons people don’t feel like they have support options close to home. Moreover, at least some of those reasons are issues that the church, as the Body of Christ, needs to address. Think about the place where you worship, what sort of resources do you have for fearlessly and nonjudgmentally supporting those grieving some kind of a loss? If you don’t know, now would be a good time to find out. Likewise, if you find that your church doesn’t really have anything, there’s no time like the present to start talking to folks to pull something together. I guarantee there are folks sitting in your pews right now, who are suffering in silence, one of them might even be you.

The other point that I wanted to make was that grief can result in you trying to prevent additional hurt by wrapping yourself in a self-protective cocoon. When dealing with grief you can feel overwhelmed and totally consumed by the pain that you are experiencing. In that environment it is easy to avoid, or put off, sharing the gifts that God has given you. This is what I was doing, and is why I felt plugged up.

Actually, “plugged up” is a good way to describe the condition. Fear had blocked the flow of the Spirit, the ruach, the Breath of God through my life. In the Old Testament, the prophet Jeremiah had the same experience – though he described it a bit differently. When he tried to stay silent, he talked about God’s words burning inside him “like a fire”. The Spirit is a dynamic force that intends to flow through believers and trying to block it up never ends well.

In closing, if you are supporting someone who is grieving, a really good idea might be to help them identify their spiritual gift (everyone does have one), and then work with them to explore ways in which they could use that gift to deal with and express their grief – like, for example, someone suggesting that a grieving would-be writer should start a blog on grieving. (Thanks, sis…)

In Christ, Amen ☩

A prayer for when you are feeling plugged up…
“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 comfort that you give to the grieving. Today I want to especially thank you for Your children who reach out with Your love to those who feel lost in pain. Please show me how to openly express my internal struggles using the spiritual gifts that You graciously gave me. Likewise, use my pain to make me sensitive and open to those around me who also need to experience Your love and the free-flow of Your Spirit. Amen”

Posted on

Reaching Further Out, #1

One of the things that I have recognized the need for is a place to expand the scope of what the blog talks about by adding supplementary posts covering other material that is related to the weekly updates, but which don’t fit well into those conversations.
This is one of those additions.

The end of a previous blog post refers to a “new normal” that, by default, assumes a certain amount of guilt. The intent of this comment was not to say that I constantly feel guilty, or to imply that you should feel guilty – both of which are incorrect. Rather, the point was that despite faith and grace, we still live in a fallen, broken world. So while most of the time we may feel good, there will be times when we are, for example, feeling tired and alone, that the guilt will creep back in. However, these feelings should not be seen automatically as an indictment of who we are as Christians or as caregivers.

You see, in addition to remaining aware that we live in a fallen world, we also need to be cognizant of the fact that we are also living (to use a war-time analogy) behind enemy lines. We need to remember that God is not the only spiritual power at work in the world. Evil also exists, and the personification of this evil delights is picking at our insecurities and accusing us of all manner of things. It doesn’t matter in the slightest whether the accusations are true or not. From the accuser’s standpoint, a twisted truth or a reasonable lie works just as well.

Right now there is a lot of talk on the various support forums about being “warriors” and, given the state of the world in which we live, I believe that as long as we don’t let it become a cliché, the current usage of that word is justified. To prevent it from becoming a cliché, we need to be clear that being a warrior is not a comfortable, easy life. As caregivers, patients or even everyday “civilians” unaffected by disease or other trials, we are in a daily battle against evil forces that strive to devalue, demean and imprison the human spirit.

These powerful forces can take the form of cultures that stigmatize or hide people because they are sick; unscrupulous people who would abuse the weak and helpless; governments that decide who has enough value to “society” to justify their lives; personal attitudes that cause us to run down and minimize our own value and contributions; and all manner of charlatans who, in the name of God, would try to steal the gifts of God from us. Opposing these forces will see you labeled as a subversive, a hater, and all manner of “-phobe.”

Now if talking about evil makes you uncomfortable, you are not alone. Most people today, Christians and non-Christians alike, don’t like talking about existential evil, preferring instead to believe that people and institutions pressing such agendas are simply “naive,” “misinformed,” “misguided,” “doing their best,” or are “just following orders” – now where have we heard that line before? To be clear, dehumanizing policies and beliefs don’t just happen. They are driven and justified by an evil that is not the result of simple ignorance, faulty socialization, some innate human tendency, or an impersonal force of nature. They are work of the same accuser that tries to convince you that you should feel guilty for giving your loved one the care they need.

Hence, now is not the time for a “soft” faith that attempts to turn the creator of the universe into a plush toy that is only fit for comforting infants and the weak-minded. As CS Lewis pointed out allegorically about God, “…He is, after all, not a tame lion…”. Now is the time for an army of real spiritual warriors to arise that in the cause of doing what is right, are willing to challenge anything, attack any bastion of worldly power and who fear nothing, save The One who leads them into battle.

In Christ, Amen ☩

A prayer for when you are about to enter into battle…

“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 strength and protection that You provide to the weak and defenseless in this dark world. But today, I want to especially bless you for calling me to be a warrior for your cause. I know that the way will not be easy, and (here at least) the compensation will be meager and the rations poor, but thank you all the same for the privilege to serve. Into Your hands I commit my spirit. Amen”

Posted on

Prayers or Pills?

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.

In case you just found this blog, this week’s installment is a little different from usual because it’s a continuation of the chapter from last week. So if you haven’t seen that post, you should read it first by clicking here. (Don’t worry, we’ll just talk amongst ourselves until you get back.)

In addition to what we discussed last week, this part of our family’s story also raises a common point of conflict between faith and medical care: How do I choose to treat any given symptom? In essence: “Do I pray about this, or do I take a pill?”

For most people, the answer is pretty clear when considering physical conditions. However, when dealing with mental or psychological problems, the water can get more than a little murky. Before going any further, please understand that I am not a doctor. So do not take what I’m saying as medical advice without first discussing it with your doctor – or perhaps even a couple of doctors.

Now with that said, let’s consider a few of the issues that you should take into account when considering a medication – for you or your loved one.

1. Can a pill address the real problem?

The first thing to consider is whether the real problem can even be fixed with a pill at all. To be sure, there are many medical reasons for psychological symptoms such as depression or anxiety, and the pills that medical science has produced are very good at handling these conditions. The problem is, what happens if the symptoms aren’t the result of a medical problem? If the symptoms are instead rooted in a spiritual problem, the pills many suppress them for a while, but the symptoms will return as soon as the pills wear off.

To address this potential, pills should ideally be given in concert with counseling from someone who is qualified to help the patient identify whether a pill is really going to help what is fundamentally wrong.

2. Lack of Authenticity

To highlight how complex these situations can become, let’s now consider the other side of the coin: Janet’s case. She didn’t want to have a pill “make her” be happy. Her underlying concern is that the happiness wouldn’t be “real” because the medicine is simply covering up a problem – which, of course, technically it is. The difference is that the “real problem”, in this case, is an incurable disease. Therefore, the best we can hope for is to cover up a troublesome symptom.

The fancy medical term for this type of treatment is “palliative care”. Again, much prayer and counseling should be used to guide you in making the correct choice.

3. Duration

This point goes with the previous two. Unless there is an underlying medical condition, psychoactive medication, should not be considered a long-term solution. If an otherwise healthy person is on this type of medication for years at a time, that diagnosis is likely one that should be revisited, with a different doctor, if possible. As an example of what you want to avoid, it is unfortunately common for doctors at the VA (the US Veterans Administration) to have vets suffering from PTSD and other conditions on a veritable cocktail of psychoactive drugs for decades with no real improvement in their condition.

Given a reasonable amount of time, if a treatment isn’t working, starting exploring what alternatives might exist for the failed treatment. For example, a recent study presents some exciting results for treating psychiatric problems with exercise. Note that the referenced document is a medical research paper so slogging through it can be slow going, but it contains a lot a good information.

4. Follow up

No competent doctor will put someone on a medication without ensuring that there is adequate follow up. The goal of this follow up is to make sure that the medicine is working with no, or at least acceptable, side-effects. In addition, while some side-effects show up right away, others can take much longer to appear. Therefore, ongoing checking and rechecking is needed.

For example, at one point Janet was on a common epilepsy medication to help control her body movements. She took it without problems for over 4 years, then suddenly it stopped working and began causing problems of its own.

5. Qualifications

The medication that I am taking can be legally prescribed by anyone with an “M.D.” after their name. But that doesn’t mean that just any doctor should be prescribing it. With specialized drugs, your primary care physician may not have had the training needed to identify problematic reactions before they become major health concerns.

Don’t be afraid to ask your doctors about their experience with the drug they are wanting to give you or a loved one.

6. Staying Alert

Continuing with the idea of healthy scepticism, whenever a new medication is recommended, you need to look it up online yourself. You can’t trust even the best doctor to tell you everything that you might need to know.

Janet has been blessed with some really excellent doctors, but once she was prescribed a drug that would have had a potentially deadly interaction with a thyroid medication that she was taking. This situation has only come up once, but in this case, even once would have been too much.

Beyond these sorts of situations, a caregiver has another advantage over a medical professional, in that you know your loved one better than they do. Consequently, you stand a much better chance of identifying subtle changes in their behavior. Good doctors will recognize this fact, and be anxious to take advantage of your “expertise”.

7. Faithfull Confidence

Finally, there is another spiritual principle to consider. In his letter to the Romans, Paul discusses a couple issues for which there was no definitive right or wrong answer. The logical point he makes is that if you don’t in good-faith have confidence that the course you’re going to pursue is acceptable, but go ahead and do it anyway, your actions are essentially saying to God, “It may be wrong, but I don’t really care.”

So whether you take the medication, or don’t, you need to be fully convinced in your own mind.

In Christ, Amen ☩

A prayer for when you are starting a new medicine…

“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 that You take care of us, heal our wounds and comfort us in our sorrows. But today I especially want to bless You for the knowledge that You give to doctors, researchers and scientists. Their skills make the world in which we live safer by turning killer diseases such as scarlet fever, into mere nuisances. Please guide my doctor in selecting a medication, knowing that in the end only You can ultimately heal. Amen”

Posted on

Righteous Guilt…

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

Resuming where we left off last week…

This whole time, our daughter Frannie (who has learning disabilities) has been living with us, and she and I are both taking medications to help us deal with what was going on. Janet, of course, isn’t taking anything because: a) she doesn’t like taking medicine and b) she fundamentally doesn’t trust doctors.

However, a shift occurred a few months ago when I had an appointment with the psychiatrist that was prescribing my meds, and who also treats Janet. After we talked about how things were going at home, the doctor told me that, for her own good, I needed to get Jan onto some medicine – even if it meant giving it to her without her knowledge. Before leaving the appointment, I told the doctor that I would think about the matter and get back to her.

One of the medicines that we had tried with some good affect, was Risperidone. Like nearly all medications that we had tried, Risperidone was not a drug specifically for Huntington’s Disease. Rather, it’s an atypical antipsychotic that is usually used to treat schizophrenia, bipolar disorder and the irritability associated with autism. However, doctors had found that for HD patients it often helped to even out their mood swings and aided them in getting to sleep. A big plus was that it is available as a clear, tasteless liquid that can be put into a variety of drinks and foods, whether hot or cold.

The only problem with the medication was that after taking it for a few day, Janet started complaining of headaches, so she had stopped taking it. But after considering for a couple days what the psychiatrist had said, I realized that the doctor was right: Janet needed something.

It was then that I remembered that we still had several weeks supply of Risperidone on hand from when Janet had tried taking it before. Checking the bottles I saw that the expiration date was December of the following year – the medicine was still good. So the next morning I put the dose that the doctor had previously prescribed (2 ml) into the iced tea that Janet drinks and watched for side effects: headaches or anything else.

After drinking the tea, Janet slept almost the whole day, but thankfully there was no sign of the headaches she had complained about before. But just as important, after the first day, the medicine continued to help her sleep, but it didn’t knock her out. The acid test, though, was whether her doctors would notice a change in her condition at her next HD clinic appointment, which was a couple weeks away.

The short answer is, yes they did! Not only did she do markedly better on the standardized tests that they always perform, but she filled out a form that they needed by herself and at one point even read a bit of a magazine while waiting. These last two items were particularly significant because the HD had severely impacted her ability to concentrate and to do simple things like read and write. It would be a massive understatement to say that the doctors were blown away by the positive change – but they couldn’t figure out what could have caused it.

After the appointment, and before we left, I got one of her doctors (the psychiatrist) to the side and told her what I had been doing. Janet’s medical team had a quick conference and the consensus was that since Janet’s mental state was so much better, I should continue administering the medicine. The doctor even gave me a new prescription. So for the past three months, I have snuck down to the kitchen every morning and put the medicine in her tea.

While the cognitive and emotional improvements are great, for me the nicest change is that when I say, “I Love You” she doesn’t get angry any more, and she even lets me kiss her. Win!

This part of our story raises two important questions, I’ll deal with the first one now and finish the conversation next week:

The medicine that I have started giving Janet is clearly helping her with a variety of emotional and cognitive symptoms, but at what cost for me? The doctors tell me I’m doing the right thing, the social workers confirm it and I can feel it myself intuitively. But somehow my heart seems to have missed the memo, and I felt rotten – especially since we had always made honesty and openness a hallmark of our relationship. After all the talking that I have done about authenticity, there is now a built-in inauthenticity at the very time, and in the very place where I wish I could be the most truthful and real.

To make matters worse, this is just one instance of a scenario where I am increasingly finding myself. Every day I have to deal with the fact that I, as her caregiver, effectively have two lives: the life that I live around friends, family and co-workers, and the simplified, dumbed-down, de-stressed version of that life that I present to Janet. To be clear, I didn’t get up one morning and simply decide to start withholding things from her. Rather, it started innocently enough with a “short private conversation” between me and her neurologist, and then proceeded by small steps as I took over greater responsibility for running the home, and tried to shield Janet from worry and harm. Unfortunately, there really is no alternative because, the simple truth is that she no longer has the coping skills to handle many of the things that are happening around her.

Having said all that, do I still feel guilty from time to time? Oh yeah…

One approach to dealing with the guilt would be to simply point to the improvements that she’s experiencing and decide that it is clearly the right thing to do because it is helping her. The problem with that answer is that it begins to sound an awful lot like, “The ends justify the means” – which is just wrong…

Instead, for me, a large chunk of the answer lies in recognizing that our relationship has changed, and that the HD has changed it. Over the past decade, it has subtly shifted from a spousal relationship between equals, to take on more of a patient/caregiver relationship that is decidedly unequal and preempts parts of the earlier relationship. However, this change doesn’t mean that I am allowed to care any less, or love her any differently. I have seen folks in situations like this justify having an affair, by saying that the person with whom they fell in love and married “…doesn’t exist anymore…”. Due to these mental and ethical gymnastics, they feel that they are therefore free to go find someone else to fill in the blanks for them emotionally and sexually. In fact, on forums dealing with issues like PTSD, this sort of story is dishearteningly common.

However, that sort of pathetic self-justification is never acceptable. As I have written recently on a veteran’s forum, what I signed up for in the marriage ceremony was very clear. There was no marriage contract with page after page of dense legalese, and our marriage license contained no “fine print”. In fact, the exact terms between Janet and I were stated very clearly in front of (as we used to say in the Air Force) God and everybody. So the only real question left for people in a similar situation is, “Are you going to keep your damned word?”

But even in situations where the original relationship was something other than between spouses, the change can be incredibly traumatic. For example, when a parent becomes symptomatic, a kind of inversion occurs where the child has to assume the role of parent to their own mother or father. A good case in point for this relationship change is Frannie. For her whole life, Mom was always the one that took care of her, now she has to be there to take care of her Mom.

The reason for all this discussion is to point out that the cause of the guilt lies in the fact that you can no longer abide by all the terms of the old relationship. For myself, it is clear that while I am still bound by the terms of our marriage vows, my new role of “caregiver” places demands on me that requires a new point of view on the relationship, and a certain amount of emotional detachment.

The part of me that is grieving the ongoing, incremental loss of the dearest friend that I have ever had, is wanting to cry nearly non-stop. However, the caregiver part of me realizes that if I did that, I wouldn’t be able to provide Janet care that she desperately needs. So, for practical reasons, the new relationship needs to overrule the grieving – at least for a while.

Consequently, there are times when, for Janet’s own good, I sometimes have to make decisions for her, and without her “informed consent”. Sometimes I have to try to shield her from troubling details of life. Sometimes I have to be “inauthentic” by putting a smile on my face when what I really feel like doing is collapsing to the floor in a puddle of tears. Sometimes I go to bed feeling guilty for being a “bad husband”.

Welcome to the “new normal”.

As I have said before, Huntington’s Disease existentially sucks…

In Christ, Amen ☩

A prayer for when you are feeling guilty…

“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 having created me as someone with whom you desire to have a relationship. But today I especially want to bless You also for giving me the ability to have relationships with those around me. But sometimes it hurts when those relationships have to change. Sometimes I feel guilty because I have to do things that the one I love might not understand. Please God, cleanse me from this guilt, guide all my actions to meet my loved one’s highest needs and remind me that, ultimately, you are the one in control. Amen”

Posted on

How Much Forgiveness is Enough?

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

Resuming where we left off last week…

After Janet’s unsuccessful attempt to have me arrested, life in our house has fallen into a rather depressing, repetitive pattern. My days consist of getting up at 7 AM, going to work, coming home (I typically buy dinner for us all on the way home), taking care of Janet and going back to bed (about midnight). Even at work there is no break from the pressures of caregiving because Janet typically calls 5 or 6 times a day to complain about something that I did do, didn’t do, or need to do. Moreover, these aren’t quick calls because the perseveration causes her to keep going back over the same topics over and over and over again.

A side effect of this routine is that I feel isolated from everyone around me. There have been times recently when the high-point of my week was “sharing the Peace of God” at church because the handshakes and occasional hugs allowed me to have actual physical contact with another human being. And every week there’s a fight about whether I even get to go to church. She always wants me to stay home because I am, “too tired” – and she says that being tired is what causes me to get angry.

Interestingly, I have discovered that I can also start an argument by attempting to apologize for something that I did wrong. An apology compounds the mistake because, in her words, “If you were really sorry, you wouldn’t have done what you did.” Therefore, I am also a liar and my apologies are deemed “worthless”. Of course, the only thing worse than apologizing is to not apologize – oy vey!

The absolute worst though, is that the only thing really needed to start a row is for me to tell her, “I Love You.” When I make that serious transgression of propriety, she gets mad and yells that if I really loved her I wouldn’t __________. Fill-in the blank with some real or imaginary complaint about my behavior.

To tell the truth, I don’t know how much longer I can maintain this schedule. I am constantly crying – but never in front of Janet, to her that’s just “Poor Mikey” whining about how bad his life is. Even Frannie is starting to become the target of Janet’s wrath and is increasingly calling me at work in tears to tell me about some argument that the two of them have gotten into.

How long, God, can this go on? Why can’t I have the “real Janet” back for just 5 minutes. She was always so smart and organized, she could tell me what to do.

Please God, just 5 minutes is that too much to ask…

This period was truly a dark time. The hardest part was that any mistakes Frannie or I made went onto our “Permanent Record” in broad strokes of dark, indelible ink. There was no forgiveness, no understanding and, very definitely, no mercy. Later, I came to realize that for Janet, her illness got in the way of being able to express forgiveness – a not uncommon problem with neurological conditions. I get it now that it truly isn’t Janet doing these things: it’s the HD. Unfortunately, Frannie is having a harder time remembering.

Yet despite (or perhaps because of) the darkness, this period taught me that one of the greatest gifts that God prepares for His children, is in fact forgiveness. Ultimately, it is thanks to His gracious and steadfast forgiveness, that we have assurance in our spiritual security and can be confident in the reality of our eternal home. However, forgiveness isn’t the exclusive purview of God. Indeed Scripture presents it as a central gift that we are to give freely to each other – as when Jesus taught us to pray, “…and forgive us our sins as we forgive those who sin against us…”

Unfortunately, forgiveness is yet another gift of God that today’s society systematically devalues. Modern psychology often turns it into little more that an enlightened form of selfishness by concentrating on the negative impacts that we will experience if we don’t forgive. Any doctrine or philosophy that treats forgiveness purely from the standpoint of human experiences and emotional consequences misses the central point that true forgiveness is, at its core, a spiritual declaration.

Before His crucifixion, Jesus said that those who believe in Him will do all the things that He had done, and will do even greater things than Him because He was going to be with the Father. Therefore, as Christians, when we forgive we are doing more than simply setting someone’s mind at ease, or stopping negative consequences for ourselves, our statement of, “I forgive you” is a way in which God is allowing us to actively participate in Jesus’ redemptive work.

By the way, when considering forgiveness, don’t fooled into thinking that forgiveness is only needed for big important things. Forgiveness is about the heart and the constant drip, drip, drip of “small” things can leave people with a host of problems including:

  • Feeling Personally Invalidated
  • Pain from Unresolved Guilt
  • Hopelessness About the Future

Of course, this fact shouldn’t be too surprising. After all, if you won’t forgive me for something small, why would I expect forgiveness from you for a big problem. So what should we do when someone apologizes?

First, honor all apologies that you receive by really taking the time to hear what they are saying. It could have taken then a while to work up the courage to say it.

Second, remember that forgiving is a holy thing so don’t just blow it off with a quick, “That’s ok” or “No problem”. Use the words “I forgive you” or “You are forgiven”. These responses may throw people off at first, but they are also very healing words. Consequently, Janet and I always used those words when forgiving our kids.

Third, Jesus also said what we bind on earth will bound in heaven and what we loose on earth will be loosed in heaven. God cares how we treat each other – sometimes more than how we treat Him. Think about it, of the 10 commandments exactly one of them addresses our relationship with God. The other 9 are all about how we treat each other. So in your heart, release (loose) them from the spiritual burden for what they did.

There are few things that we can give to another human being that are greater than forgiveness.

In Christ, Amen ☩

A prayer for when you don’t feel forgiven, or like forgiving…

“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 boundless forgiveness and mercy. But today I want to bless you especially for the gift of us being able to forgive one another. You know that all too often when I am feeling hurt and unforgiven, I don’t want to forgive either. At those times, I don’t want reconciliation, I want to get even. I want to make them hurt like I hurt. Please God, forgive me and show me how to make amends to those with whom I have unresolved anger. Please show me that what I really need is not revenge, but are loving brothers and sisters. Amen”