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Thoughts from a fairly good friday

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.

Perhaps because we have all been confined here at home due to this virus, or perhaps just because things always get worse, this week has been something of a mess. Early on, I had hopes that things might get a bit better because Janet and I talked on the phone with her neurologist and Janet agreed to try an additional medicine (Klonopin) to help with her mood and chorea. Unfortunately, in the 24 hours between the phone call and being able to pick up the medicine, Janet changed her mind again and decided that she would try it, but only after her bowels got sorted out. Translation: She’ll take the new med when pigs fly!

Subsequently, I have spent a lot of time this week crying over losses – a situation exacerbated no doubt by my inability to sleep through the night. The world seems overflowing with things to fret about. Things like dear friends being in peril, from viruses – and other things. Then there are the hopes that seem to revive and then deflate, all within a few hours. As roller coasters go, the one I’m riding now pretty much stinks. The problem of course is that with a physical ‘coaster you get to experience thrills and chills, but in a safe environment where no one is ever really in danger. Unfortunately, with the one that I’m on, people really die. The “thrills and chills” come from trying to figure out whether they are going to die now or later.

People who have been following this blog for a while know that my Janet most-likely inherited HD from her father. Long time readers will also remember that he and I never got along very well. In fact, harsh words often passed between us. Or they did at least until one day when Janet and I went to see him while he was in a hospital towards the end of his life. At one point he got Janet and her mother out of the room on the thinnest of pretenses:

“Mena, why don’t you take Janet and show her the cafeteria in this place, it’s very nice.”

The cafeteria? Really? What could this be about? As soon as they were gone, he called me to his bedside and held out his right hand. When I took it he said,

“I just wanted to tell you that I’m sorry. You are a good man and I am glad you married Janet.”

I thanked him, and shook his hand. After that we sat quietly until the ladies got back from their “tour” of the hospital’s culinary facilities – each of us deep in our own thoughts. A few weeks later, Janet’s dad was dead.

The reason that I am bringing this up, is that this morning, Janet (in a rare moment of mental and verbal clarity) told me that she was grateful for all the things I had done for her, and that I had been a “good husband”. Soon, however, the HD closed back in and I was back to being an insanely huge mistake in her life.

Please excuse the language, but roller coasters are a bitch.

Today, as I write this, it is Good Friday. To modern Christians, it is certainly a strange name for an admittedly strange holy day. It commemorates the death of Jesus on the cross. Especially now, in the midst of a pandemic panic, why would that death, or any death for that matter, be considered “good”?

And what are we supposed to do with Good Friday anyway? We certainly don’t run around telling one another, “Merry Good Friday!” The problem with Good Friday is that the holiday and the name come from a time before we (individually) became the center of the universe. It was born out of a culture where sacrifice was seen as a noble thing – and not at all stupid, offensive or degrading. But mostly, it came from a time when people were able to maintain perspective about the importance of experiences and situations.

In some ways, a lack of perspective may be a uniquely American problem. After all, our mere 250 years of existence is quite literally the blink of an eye in the overall flow of history. Not long ago I was talking to someone from Italy about the virus and my concern for the health of her family. Her advice: “Don’t worry ahead of time. God takes care of things.” In these situations, Italy has the advantage of millenia of historical perspective. Within just the past 100 years, they have had to deal with not one but two world wars that were fought at least partially within their own national borders. Unlike the US, for whom both wars were “over there”. And when the pandemic did come knocking, they did what needed to be done, but didn’t abandon community. Instead they moved to their balconies and had nightly distributed concerts and community sings. They played, sang and cheered for each other because they knew that when this plague passed – and plagues always do – life resumes. So while the loss of life is tragic, only the loss of community would be truly catastrophic.

By contrast, here people are in a tizzy over the fact that 100,000 people could die from this virus while ignoring the fact that this total is still thousands short of the death toll that the seasonal flu racks up every year. To be clear, if the death toll rises that high, every one of those deaths will be a tragedy, but how about a little perspective? Look up the number of people who die from things like heart disease, cancer, suicide or even childbirth. Moving closer to home, what is the annual death toll of degenerative neurological diseases? Although there are arguments over the exact number, some reports show that for Alzheimer’s alone, the US total could be over 500,000. Every. Single. Year.

Perspective…

Another thing that would be nice is to be able to get the facts of what we are going through right now with a lot less sensationalism. The other day I saw a news story that described in excruciating detail (and with pictures!) how right now, all over the world, there are literally millions of medically untrained senior citizens providing the day-to-day care for loved ones with terminal diseases! This revelation might have been earth-shattering to the 20-something that “discovered” this fact, but for many of us, it’s not a revelation, it’s our life. Want to see a really scary number? Research the number of these “untrained senior citizens” (i.e. caregivers, like us) that die every year, decades before our peers. In one sense, this lack of recognition feels very familiar – I was, after all, in SAC (Strategic Air Command). Who knew or really understood what we did either?

Furthermore, consider this very blog. Who in blazes am I to be advising others? I’m just another medically untrained senior citizen who is trying to pass along what I am seeing and feeling and experiencing, and praying to God that I am doing even a few things right. I don’t enjoy flying by the seat of my pants, but what else is there? If Janet didn’t have me, she wouldn’t have anyone.

The bottom line is that we are all amateurs on this bus. We all have things to contribute and to learn. None of us are really prepared for the jobs into which we have been thrust. We all lean on and depend on one another. We all have a dirty job but we do it, even though it often means sacrificing years off of our lives. So perhaps Good Friday is, after all, the perfect time to acknowledge the “good” work we do. But it is also, without a doubt, the time to remind ourselves of a few things.

First, we don’t live in a “safe” world. None of us are guaranteed even the next five seconds. Something could happen before you finish reading this paragraph, and anyone who says otherwise is lying to you. Bottom line: life has a 100% fatality rate. The question is not whether you will die, the question is whether you will live before you do so. Second, this work isn’t about us – that is why it is called service. Consequently, whether we realize it or not, what we do does get noticed. Even without accolades from important people, ribbons or medals, what we do is seen by Someone. Third, we are never really in this fight alone. In addition to the globe-spanning support community that we have created for ourselves, The One who notices, is also The One who blesses, strengthens and sustains us. In the end, that support is our only real source of hope. And without that hope, we are (as Paul pointed out) above all people, most to be pitied.

In Christ, Amen ☩

A prayer for when you feel that the world is on your shoulders…

“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 world in which we live and the protection that You give us. But today I want to bless you especially for the strength and insight You provide to me. It is so easy for me to fall into the trap of believing that I am just a small cog in a very big machine. I know that most of the time, I can’t comprehend what it is that You are up to, but thank you for showing me the pieces that I can understand. Thank you for the courage to continue on when I seem surrounded by darkness and pestilence. I pray, Lord, that You will show me how to be a beacon of light and hope. Amen”

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So What’s There to Lose?

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 past two weeks, the worldwide Coronavirus panic, has impacted the Porter household in a couple ways. First, my company has been determined to be in a critical industry, so my job is safe. However, it was also determined that I don’t have to be onsite to do my work, so I am working out of the house for the foreseeable future. This week is the first full week that I am home.

The second impact has been to answer an unfortunate question. I have been trying, for some time, to sort out exactly what relationship still exists between Janet and I because it doesn’t take a genius to realize that things are clearly not as they were on our wedding day. As I have shared here before, I have been reading and thinking a lot about what psychologists call ambiguous loss, and I have gotten as far realizing that I am stuck somewhere between being her “husband” and her “male nurse” – two positions with very dissimilar job descriptions. So I have begun trying to understand what I have already lost, and what else the disease will likely consume as it continues to progress.

The first time I really began to understand what HD meant in concrete terms was shortly before we moved from Ohio to Texas and our son came for a visit. He and I were out together one day doing some shopping and I took the opportunity to try to explain to him some of the troubling behaviors that I had noticed were developing in his mother. So I cautiously explained all the things that I had observed, being very careful to include only situations that I could easily justify to him. I was so careful because I was sure that his reaction would be, “Oh no Dad, you must be wrong! Not Mom!”

Instead, what I got was a shrug and, “Yeah, but Ma has always been like that…”

As we continued talking, it became clear that my college-age son had a much better insight into what was going on than I did. He explained to me that when I was away for work she would “make nice” while I was home on the weekends, only to let loose again when I went back to work. It was clear that my son’s memories went back a lot further than her diagnosis.

Eventually I had the opportunity to listen to webinars on the HDSA website that talked about the progression of the disease before the patient is diagnosed. One of the things that researchers had begun recognizing was that while the physical symptoms were typically what drove the patient to go see a doctor, the emotional and cognitive problems could start much earlier, often decades earlier.

The most immediate result of this information was the realization that it was possible – indeed likely – that our two children had never known their mother when she was not exhibiting the effects of HD. That was shocking enough, but as a result of my recent inquiries into what I had lost, I came to suspect that the same might be true for me as well. Perhaps, on our wedding day, Huntington’s Disease was already in the picture, already playing a role.

Goodness knows, in hindsight, there were warning signs aplenty. A friend that has known Janet for years once told me, for as long as she has known Janet there were times when she could be “difficult” due to her temper. Then there was the fact that Janet never liked holding hands while we walked. She said that it threw her “off-balance.” I always took that explanation to mean that she just didn’t like holding hands, but now I wondering whether HD had already started degrading her balance, just a bit.

So if I circle back to my original question, “What have I lost?” And I discover that the loss might not be so ambiguous after all. One of the things that I have clearly lost was a fairy-tale past where everything was “OK” before the disease. I realize I made a lot of excuses for her over the years, such as the time when I explained to the cop living next door to us in Ohio that I had a black eye because I walked into a door in the night. He just stared at me with a look on his face that said, “Do you have any idea how many times I have been told that crap?” But all he said was, “Are you sure that’s what happened?”

Looking back, it’s very likely that the Janet I miss, the “real” Janet that I have talked about so often, never really existed at all except in my hopes and dreams. The real Janet was the person that she would have been had she been able to free herself from the baggage of her father’s abuse. That was the battle I was prepared for and was more than willing to fight. Unfortunately, that was not the battle I got.

Just as she inherited the HD gene from her dad, she also “inherited” the anger. However, that inheritance did not come about through the action a DNA molecule, or even a probate court. Rather, it was passed on through an endless series of assaults, such as being slapped across the face multiple times because she didn’t know what page of the missal a particular prayer was on, or being verbally derided for not knowing what country produced cinnamon. And if that load wasn’t enough, when the HD began to manifest itself, she got new anger of her own. Anger about a world out of control, anger about failed expectations and unfulfilled promises. Every day now, anger piles on top of anger to create an unstable emotional tower that is doomed to fail when it can no longer support its own weight.

So where exactly does that leave me? What I’ve lost is a fairy tale. What I’ve gained is a large dose of castor oil-flavored reality. The “smart money” would probably tell me to cut my losses and get out before it gets worse. The only problem with that advice is that I have never been particularly “smart” in that way. In point of fact, I still believe in such quaint and corny ideas as integrity and keeping your promises – even when the only thing left of the original relationship is The Promise.

Consequently, I will for now let “husband” fall to the side and find fulfillment in my new position as “male nurse”. So should I consider that move a demotion? No, not really. You see my core desire has always been to give Janet what she needs, and she doesn’t really need a husband right now, what she needs is a really good nurse.

In Christ, Amen ☩

A prayer for when you are a little slow…

“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 always knowing and providing what the cosmos needs. But today I want to bless you especially for truly understanding what is needed in my world. There are so many times that it feels like I am slow to understand hard truths, but then I see that it’s just that You made me idealistic and hopeful. Thank you for making me who I am, and using me just that way. Amen”

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Ambiguous Loss

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.

So what can I say about this week? Should I go into the details of what it is like to be quarantined with a woman that says the words, “I love you” but in actions says the exact opposite? No, there is no point in plowing that field again, so let’s talk about something else. The weather? No, that is too local. Politics? No, that is too divisive.

I have it: Risk. That is a good topic, but it is a dangerous one. To risk is to put something, perhaps everything, on the line. Risk means to put up or shut up, to commit yourself regardless of the cost. Risk is a timely topic right now too, as every newscast seems to be about it.

I haven’t mentioned it before publicly, but I have started learning Italian. Why? Partially because it is a risk, though an admittedly small one. But love, marriage and life – those are big ones. When Janet and I were going on our honeymoon, we decided to go to Tahiti because Janet had a job where she flew a lot, to the point that the airlines were almost paying us to go there. While there we met an Italian gentleman Signore Mantovani. As I recall he was some sort of official with the EU. He was alone because he had just lost his wife after a long illness and was traveling, revisiting all the places they had gone together as a couple. When he heard Jan and I were newlyweds he immediately “adopted us” taking us on obscure tours that he knew about and one night took us to dinner.

For those of you who have never had a real Italian dinner, it is not a quick sit-down to a plate of spaghetti at Olive Garden. A real Italian dinner is an all-night affair. So we had been “dining” for a couple hours and had just finished our appetizers and a bottle of very good wine, when Signore Mantovani looked at me and said, “You know what the problem is with Americans?” I had to admit that I did not know. He said, “You eat too fast! In Italy, we talk a little, we eat a little, we have some wine – and then we talk some more. In Italy, dinner holds us all together! Dinner isn’t about feeding the body. It’s about feeding the soul.” What he meant, of course, was that in Italy eating is always about more than food. Meals are about famiglia, family – and that understood in the broadest possible way. The dinner table is where traditions, lessons, love and recipes are passed on from one generation to the next.

Questo è per te Signore Mantovani!

Last week, I mentioned a term, more or less in passing. I had heard it from a friend online but have since found out that it is a real thing. The term is ambiguous loss, and it provides the title for this post. To my surprise, a psychologist, Dr. Pauline Boss, has been writing on this topic for nearly 20 years. One of the points that she makes in her work is that while “ambiguous loss” certainly applies to situations such as people suffering from dementia, there are also many other sources. For example, for someone who is divorcing, there is an ambiguity about the loss in terms of what exactly is going to be the relationship going forward. Likewise, she has worked with wives of MIAs about the ambiguity of their own marital status. Are they still married, or are they, in fact, widows. Even a child leaving home for college can produce a sense of ambiguity. Do we set a place for them at Thanksgiving, or should they be included when you say “we” (meaning the family) are going to do something? In the end, we see that ambiguous loss is actually much more prevalent than the “normal” kind where we can, for instance, see a body lying in a coffin.

For this reason, I have been looking into the matter further and the result is (at least) this post. While I haven’t done a book report since high school, that is what you are getting this week. Specifically, I’m going to be talking about Dr Boss’s first book on ambiguous loss called, appropriately enough Ambiguous Loss, Learning to Live with Unresolved Grief. This book is available on Amazon in hard copy or as a Kindle download, which is how I read it.

The first thing I want to point out about this book is that, while its primary audience is the psychological “clinician,” Dr Boss has a writing style that is nevertheless accessible and very easy to read. For example, the “case histories” that she presents are as likely to come from her own or her family’s experiences as from those of a client. Which is another good point, she never refers to the people or families that she sees as patients. Likewise, she doesn’t refer to her sessions as therapy because, in her view, words have meanings and to use the word “therapy” would imply that there is something wrong with the person or the family that needs to be fixed. In truth, she points out, the problem is not dysfunctional people but a dysfunctional situation. It is the situation that needs to be addressed. Consequently, rather than being the problem, the people are always part and parcel of the solution.

Dr Boss, likewise, doesn’t try to rephrase discussion of psychological matters in “layman’s terms.” She says, and I agree wholeheartedly, that talking down in that way is condescending to the people with whom she is working.

In addition to the psych-jargon and condescending attitude, also missing from this book are long drawn out discussions of the brilliant solutions that she developed for a family’s problems. Instead she presents solutions that people developed on their own to address their own needs. For example, she cited the case of a woman whose husband had an advanced case of Alzheimer’s Disease and who, despite not remembering who she was, was continually making sexual advances to her. In the end, the accommodation that the woman developed on her own, was to remove her wedding ring and put it in her jewelry box. She had realized that the thing that was causing her so much grief was the ambiguity between the conflicting roles of “wife” and “caregiver.” This simple act of removing the ring gave herself permission to temporarily set aside the wife role so she could concentrate on being the caregiver that her husband needed. Eventually, when her husband died, she retrieved her ring and took up her new role as “widow.”

Now obviously this solution will not work for everyone, but that very fact demonstrates an important point. Just as the loss is ambiguous, so are the rules that govern dealing with the loss. Therefore, the person or persons grieving will often have to cast a wide net to obtain the information that allows them to (prayerfully) synthesize for themselves a way forward. Such input can come from psychological professionals, family/cultural traditions, and their faith community.

In another case history, Dr Boss points out a fact that in hindsight is rather obvious: ambiguous losses are cumulative. In other words, most of us will go through multiple losses that would fall into this category and ones that are not resolved adequately add to the mental load imposed by the later ones. This stacking of loss upon loss can mean that dealing with a current loss can easily turn into an archeological expedition digging up and healing old unresolved grief that is being triggered.

So what is my final evaluation? I would say that this book would be money well spent for anyone who is being troubled by uncertainty – and who isn’t these days? You won’t find in it pat answers or how-to “recipes.” What you will find is information that will help you understand, and come to grips with, what is going on in your life.

As I was finishing up this post, it occurred to be that right now the whole world is in the midst of dealing with a massive ambiguous loss – so ambiguous that we can’t even be sure what it is that we might have lost. I am speaking, of course, of the pandemic that may (or may not) be raging across the globe. Is this the greatest threat to civilization since the bubonic plague, a hoax thought up by a shadowy global elite to enslave mankind, or a biological warfare experiment that went horribly wrong? Whom do we trust for information? Friends, family, media that can be owned by the government that it is reporting on, or the proverbial “guy in a bar”? Due to the ambiguity inherent in this situation, these ideas, whether we believe them or not, can and do create question marks in our minds that we have to deal with.

And then there is the question of what we may (or may not) be losing, or be in danger of losing: our life or the life of a loved one, freedom, country, religion or perhaps something larger like our sense of community and trust? Clearly we all have a lot of work to do.

In Christ, Amen ☩

A prayer for when you are feeling uncertain…

“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 certitude that You provide. But today I want to bless you especially for ambiguity. You are at once the central exclamation point of my life and the biggest question mark. There are so many things of which I can be absolutely certain, but at the same time so many things about You that are (to use the theological term) mysteries. Lord, help me to learn to be comfortable resting in the mysteries of who You are, and give me Your words to reach out to others. Amen”

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Which Way is Up? (Part 2)

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 has been hard. The new medication is helping a bit with Janet’s chorea and she is sleeping like a baby every night. However, other issues are continuing to worsen. The anger has been much more pronounced and she is very demanding in terms of what to do and the order in which to do it. Our daughter Frannie, understands that when Mom changes her mind and gets angry, that it is the HD. But on some level, she doesn’t care anymore. She just wants Mom to hear her and believe what she says. For myself, everything that I hear about on the news seems in a lot of ways be our home dynamic playing out on the world stage.

It occurred to me that maybe all the news readers have HD, or Alzheimer’s or something and that is why they can never get the stories right. But no, that’s crazy, right?

A long time ago (or at least what feels like a long time ago) my second post to this blog was titled, “Which Way is Up?”. That post was supposed to be about some of the disorienting changes that took place in our lives after Janet got her diagnosis. Although it started off that way, the post quickly developed a mind of its own and wandered off in another direction – which wasn’t necessarily a bad thing. It did, however, leave this topic unresolved and recently I have seen a lot of newbies on the support forums who are struggling with this transition. Consequently, I’m circling back to give a little more of a voice to this early time in our HD journey.

After Janet got her diagnosis, we moved back to Ohio pretty quickly so her first real HD appointment was going to the Center of Excellence at the University of Ohio Medical Center. During that first appointment we understandably had hundreds of questions about the disease and the sort of care that would be needed. So someone advised that a great way to get our questions answered would be to attend a local support group meeting, and we arranged to go to the next one. Unfortunately, no one spoke to us to prepare us for the meeting, or help us to set our expectations.

Their group at that time had a couple late-stage patients attending. Needless to say, we were totally unprepared for what we saw, and we went home terrified – each for our own reasons. At that time Janet’s major physical symptom was that her feet were twitching at night. She couldn’t imagine needing to be strapped into a wheelchair so her convulsions wouldn’t throw her out if it. For myself, I had no idea how to care for someone with that level of need.

When, a few years later, we had gathered enough courage to attend another meeting – this time in Texas – we were better prepared and understood things much better. First, we understood that everyone with HD is on their own journey. Some have extreme chorea, some have hardly any. Some slowly forget everything about their previous life and drift off into a kind of non-being, some become so emotionally disturbed that they must be committed to an asylum. Still many things are common for most, like anger or perseveration.

Which, by the way, brings up another good point. If you are a caregiver for someone with HD you will be learning a new language. I know your neurologist appears to speak the same language you do, but in fact they are speaking a specialized dialect called “doctor”. So you will be learning a lot of new words – like perseveration. Over the coming years, you will also be earning a minimal degree in nursing as you learn to deal with your loved one’s daily medical and personal care needs. And that’s to say nothing of all of what you will learn about how the medical systems in your country work, which it should be no surprise, is very different from the way the politicians tell us they work.

My advice? Get a notebook and keep notes of everything you hear and learn. There will be a test on it later.

During this time, I also learned the real meaning of the term “degenerative”. It means that often today, no matter how bad it may be, today may be the best day that Janet will have for the rest of her life. I also learned that “degenerative” can be a kind of perverse blessing in that as Janet slowly grew worse and worse, I had the time to grow up and grow into my new role. If you are the caregiver, there will be days when you want to give up and surrender or simply give in to the anger, depression and anxiety. While I could tell you to not give in because it doesn’t work, I won’t bother because everyone does from time to time – or they do until they learn for themselves that it doesn’t work.

So does anything help? Yes. Prayer (constant and unending), counselling (to help you learn), fellowship (to gain perspective) and medications (to get you through the rough patches) – these can all help.

The thing that has been the hardest for me to remember is that who Janet and I were 12 years ago, is gone. But as bad as it has been for me to watch what Janet has gone through, I can’t begin to imagine the horror of being her, and everyday feeling some piece of who you are, slip away through your fingers.

When Janet and I first got married, there were many things that I didn’t understand about Janet’s personality. However, Janet came from an abusive home environment so I thought that eventually Janet would come to learn that in this relationship, at least, she was valued and treasured. But that never happened. I learned instead about Huntington’s Disease, and I learned that her father wasn’t just abusive, he was sick. Finally, I learned that Janet had the same illness, and many of the same symptoms.

So, I guess, I have made peace with the way things are. Or at least I have made peace to the degree that peace is possible. How does one ever make peace with seeing the one you love disappearing before your very eyes, yet while their body continues to exist. I have heard that this process is called “Ambiguous Loss” because your loved one is gone, but then again, they aren’t. One of the things that I have consistently tried to express throughout this blog, is that there is no going back. Who you were and who they were, no longer exists.

Given all this doom and gloom, there are those around me who, like Job’s “friends”, seem to suggest that I should just curse God and die. In addition, there are those that claim that HD is unequivocal proof that God does not exist, or if He does exist he is in reality a demon. But I reject both arguments. I reject them because, as I’ve explained before in the blog, they start from faulty assumptions about the world. But just as important, while there are many dark places where I am traveling right now, there are also many bright spots. While some of those bright spots are the many wonderful programs and facilities that are available to support you and your loved one, for me though the brightest spots are always the people. On the support forums, God has gathered together many, many really good people. For example, there are people from the USA, the UK, Australia and Italy that I have never met face to face, but who, if it came right down to it, I would nevertheless trust with my life. In addition, the internet is global in scope so if you have a problem, someone is always awake, no matter what the local time is for you.

So there is my message for the newcomers: have faith, learn as much as you can, don’t stress over letting go of things that you can’t hang onto and, to quote the line from the play, Who’s Afraid of Virginia Woolf, “Fasten your seat belts. You’re in for a bumpy ride.”

In Christ, Amen ☩

A prayer for when you are new, confused and afraid…

“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 love and presence. But today I want to bless you especially for not abandoning the world that you created perfect, but which, today, has so many problems. Thank you for living among us as “Emmanuel”. Thank you for using me to help heal the brokenness in this world. Show me the way forward. Amen”

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…but what else 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 we had an appointment with Janet’s neurologist. It went well, though her weight had gone down 2 lbs. Janet started a new medication this week that should help her with mood, chorea and sleeping. So far it seems to be helping a lot with her sleep. Last night she went to bed about midnight and didn’t wake up until about 10:30 am! Mood is continuing to be a problem. Last night she was yelling at me and Frannie about cough medicine. She said that I lied because I forgot to get the cough syrup that Frannie requested when I went to the store on the way home from work. Then when I found a bottle of a different brand at home and Frannie told me that it was ok and would work fine, Janet started yelling that Frannie was lying too. At that point I stepped in to protect Frannie and things went downhill from there…

After the party that I discussed last week, things went well between the two of us until Janet’s dad heard that I was (a) divorced and (b) a Lutheran. To this day, I’m not sure which bothered him more. I found out later that before we met Janet hadn’t been to Mass in 15 years, and although we had only known each other for 6 months, I somehow became responsible retroactively for the entire 15 years of her apostasy. In any case, one Sunday we were at her mom and dad’s house and they asked Janet to come with them to a back bedroom. A few minutes later she came out and announced, in no uncertain terms, that we were leaving – Jan was clearly angry. When we got out to the car she told me that her parents had been grilling her about my past life. She tried telling them that we had discussed it in detail and that was all that was necessary. But not for her dad, he just kept getting angrier and angrier. Have I mentioned that we think her dad is where she inherited the HD?

The whole next day at work, the conversation kept replaying in my head and every time it did, it bothered me more. So I decided to go back and talk to them about it – without Janet. By the time I get to my future in-law’s house, I was angry too. When I sat down to talk to her dad I reiterated that she and I had discussed everything so she was going into whatever was ahead with her eyes open. Consequently, if he had any questions about my past he was to talk to me directly and he was not to harangue Janet about it.

So he demanded to know whether I was paying child support. I assured him that I indeed was paying support. But he pressed further, “How much are you paying?” Looking him in the eye, I told him, “None of your damned business. Next question?”

For a moment, I was afraid that I had overplayed my hand. You see a few years before Janet’s dad had suffered a stroke and I was momentarily afraid he was going to have another one. His face turned a bizarre reddish-purple color and the veins on his forehead were bulging. So reckoning that I had made my point, I left. Later, when I arrived at Janet’s house, she met me at the door and related to me the contents of a phone call she had just had with her mother, and asked me if what her mother just told her on the phone was true. I told her it was, and she hugged me around the neck.

In the past, I have talked several times about the loss of identity that can occur when you lose a loved one and are grieving that loss. For example, after 30+ years of marriage, you might have come to identify as one half of a couple. But when that relationship ends you can be left wondering who you are now. Of course with diseases that produce dementia, your loved one doesn’t even have to die for you to experience that sort of identity crisis. As their personality changes, or worse, dissolves completely, you can be left in a state where you question everything about who you are, what you are doing and whether your work is actually accomplishing anything useful.

I believe that crises of these sorts all lead back to a common root: needing to be needed.

So to explore that point a bit, let’s start with the situation where your loved one is still alive, but is rapidly deteriorating. Oftentimes when a loved one is newly diagnosed with a degenerative disease, they respond with thankfulness and gratitude for every little bit of service that you provide them. But then things start to change. Due to the effects of the disease, the warm feedback stops and your loved one becomes sullen, uncommunicative or even openly hostile. Instead of the original, “Oh thank you, honey, for getting that sandwich for me.” You have to deal with, “So what took you so long?!” – or worse. To address this case, let’s take a riff on a famous kōan:

“If a tree catches fire in the middle of the forest, and there is no one there to see it, is a fireman needed?”

Clearly, one tree can catch another, thus leading to a wide-spread conflagration, so in one sense, yes, a fireman is needed. Now, let’s say that by chance, a fireman happens by and seeing the flames, puts them out, and saves the forest. The thing is, as that fireman proceeds on his way, he may be basking in a real sense of accomplishment, but it’s very likely that he won’t feel “needed” because there was no one around to acknowledge that need or express gratitude for his actions.

Here we see in stark contrast the two aspects of needing to be needed. One is the objective question of whether or not some action is actually warranted. The other, subjective point, is how your actions are perceived. From this explanation we can see that most scenarios where a caregiver complains about not being needed are actually cases of where they don’t feel needed – an important distinction.

Consider that saying, “I’m not needed”, is voicing a statement that is almost entirely about you: You are not adequate for the task at hand. You are not important. You are not enough. However, saying, “I don’t feel needed.” is a comment that is all about the care situation. In fact, the assumptions behind such a statement are that you are adequate, and you are important, and you are enough. The problem is in the reaction. That is a much different, and far easier, problem to solve, and one that we have talked about before.

Curiously, this dichotomy can even exist in the situation where the loss is complete because the loved one has died – though it looks quite a bit different. Now the objective view affirms that you indeed are not needed because the person needing you has died so there is nothing more that you can do for them. But here, the subjective view can come to your rescue by pointing out some important things to consider.

Above all, there is the matter of perspective. Maybe you aren’t feeling needed because your worldview is too small. Instead of wringing your hands over being “useless”, try asking God, “What is there for me to do?” Alternatively, you can look at the challenges that you have recently faced and reconsider them from the standpoint of the question, “What was God preparing me for?” Now admittedly that might be a novel perspective for some, but I have found that it’s the novel perspectives that give the most interesting answers. Oh, and given that there is no such thing as a coincidence, don’t forget to consider the talents that you have picked up along the way – even a trivial one like knowing how to knit…

To illustrate, many years ago when we lived in Tucson Arizona I heard a story on the radio about how dangerous hypothermia can be for people living in the streets – even in Tucson. So in response, I came up with the idea of creating an interdenominational project to knit stocking caps for the homeless men, women and even families. Each cap came with a tag inside it that said:

“This cap was not bought in a store. It was hand-knitted by someone who believes that you are worth the effort it took to create it.”

For distribution, I went to the Salvation Army. By the end of the project, they had handed out over 700 caps that we created.

Now I assumed that this project would do great things for the folks receiving the caps. What surprised me, though, was the gift that it was to the knitters. For example, one the ladies was from one of the big Catholic churches downtown. She and her husband had been active members for many years and when he passed, she embraced new role as widow, and threw herself body and soul into serving the parish. She chaired committees, headed up charities and out-reach programs, you name it.

Then one day her doctor told her that she had a very bad heart and that she had to stop all outside activities – she wasn’t even allowed to leave her apartment to go to Mass. In one day, she went from being involved in everything to feeling literally quite useless. And to make matters worse (from her perspective at least) it quickly became apparent that all the parish organizations that she had been in were managing quite nicely without her.

A few weeks later when the priest came by for his weekly eucharistic visit, he told her about this guy who had contacted the parish office with a project to knit stocking caps for the homeless. Maybe that was something that she could do since knitting isn’t at all strenuous. So she called and I explained the project and why it was needed. Even though it had been years since she had knitted, in the end she agreed to try. The next day I went to visit her and give her some yarn to get started and a pattern.

To make a long story short, she attacked this new project the way that she had everything else in her life and soon she was turning out caps at an amazing rate. It didn’t take her long to use up the yarn I brought her. So she had friends run to the store and she bought more yarn on her own, and people she knew from the parish brought her even more when they heard about what she was doing.

With this simple thing she found new meaning and new usefulness. But mostly she found people who truly needed her.

However, all this discussion begs the question, “What is it about being needed that we find so important?” Well I believe that when God created humankind He, metaphorically speaking, left His fingerprints in the wet clay. And I believe that one of those fingerprints is our deep need to serve others. The reason we need to be needed is that it’s built into who we are as people. In fact, it’s so much a part of who we are that to deny it we have to in essence deny our very humanity. Perhaps this is the one of the root problems of big cities and other environments that teach us to ignore others and just look out for ourselves: survival is framed as being dependent upon us not being human.

So to close I want to quote Ralph Waldo Emerson. I feel with its pithy, very New England tone, this statement puts the point particularly well.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”

In Christ, Amen ☩

A prayer for when you don’t feel needed…

“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 creating me in Your image. But today I want to bless you especially for the divine mark that You left on my soul that enables me to not only enjoy serving, but allows the serving to sustain me, like emotional or spiritual food and water. Correct my too-small perspective and clear my eyes so that I might see the work that you have set before me. Dear Father, make me useful. Amen”

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Loneliness and the “I”-word

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 past week has been interesting, because everything seemed to have been about the topic that I am writing about this week. It seems like a lot of things in life right now are sort of congealing into a philosophical blob about why we are not closer to each other. Isolation, loneliness, “private” HD, wonderful friends being concerned that if they admit to being physically or emotionally less than perfect, they would lose me as a friend. It all feels like it is cut from the same bolt of messed up cloth.

I remember a dark time in my life where I would sit and watch traffic, and think that in one of those cars is someone that could be important to me, and to whom I would be important. But how will we ever meet? That’s when I decided to run an ad in a local paper looking for someone to date. (This was the 1980’s after all.) The results were initially not too promising. One date asked me to pick her up for our first date, and she met me at the door in a negligee! Then on a first phone call with another one, she asked me if I minded that she had really small breasts (actually she used a different, “earthier” word to refer to that part of her body). I told her it didn’t bother me per se, but I did find it a bit “disconcerting” that she brought it up 30 seconds into her first conversation with a total stranger. And then there was the woman who claimed to be a lesbian but was looking for a guy to share her 1 bedroom (!) apartment because she felt safer with a man in the house.

Then when I was about to give up, I got one more letter on personalized lime-green stationery, with the name “JANET” at the top in bold block characters. That one letter was worth it all…

Last time we considered loneliness from the standpoint of things that a caregiver can typically lose due to the progression of this disease. The things we discussed ranged from the patient’s inability to simply express love by saying “I love you,” to their inability to even behave like a rational human being.

But before moving on, there is one remaining piece of business that needs to be handled. You see, as I considered my situation, I have come to see that I am surrounded by people who love me in a multitude of ways, are willing to say so, and even demonstrate it in the form of hugs, gentle touches and reassuring words. I receive this kind of support from family, friends from church – even people I know from online forums and local support group meetings. So, while loneliness can result from not being told that you are loved (and that certainly is a factor) it was not for me the root cause of my loneliness. So I continued looking…

My next clue came when I saw a post online from a woman who described in heartbreaking detail the feeling of being invisible – of people not really seeing her. Professional caregivers would come into her home to take care of her husband, and as they went about their duties she would feel pushed to one side – not really a part of what was going on. Now that feeling struck home.

The HD clinic we go to is always great, but I can remember, for instance, going to an Urgent Care clinic and being treated like the bus driver. Which, if you think about it, actually makes perfect sense. After all, Janet was the patient, not me. Still, I have gotten used to being part of her care team, and then in those situations, I’m not.

So with that one insight, I began exploring the idea a bit and the more I thought about it the more real it felt. Moreover, connecting the dots between invisible and lonely is really easy. If you are invisible, you are unseen. If you are not seen, there is no way that you can be known, and it is the recognition of this isolation that produces a profound sense of being alone:

The progression from invisible to alone

But this progression also points to the solution. Consider this: If the sense of aloneness is brought on by not being known, the obvious solution is to become known. Consequently, being known results in you being recognized, and this recognition enables you to becoming fully present – which in this sense is clearly the opposite of invisible:

The progression back to present

Looks easy on paper, right? How do I become known, and in so doing, put this insight into action? Well, there is a word to describe this process of getting to know someone deeply by profoundly understanding them. Unfortunately, the best word to describe this process is “intimacy.”

I say “unfortunately” because that word today carries with it quite a bit of cultural baggage. Our society has turned intimacy into a virtual synonym for sex. Ironically this redefinition is occurring at the same time that common terms like “friends with benefits” are turning sex into a purely physical act that is totally devoid of anything even remotely resembling intimacy! If you have never heard the term, feel free to look it up online, but be forewarned: it may turn your stomach.

So what am I to do? I could simply accept the Orwellian redefinition of yet another word, but as many people have noted, to change the culture you don’t need a mighty army, just the ability to print dictionaries. If you can redefine the words people use, you can control their thoughts, and if you can control their thoughts, you can control them.

“But,” you might ask, “what real difference does it make?” Simply this: If intimacy is redefined as simply a contextless, amoral physical act, we have essentially undercut the emotional and moral underpinnings that hold our society together by making emotional isolation and hopelessness the norm. If intimacy is redefined simply as sex, then people will only feel comfortable having close relationships with people they want to go to bed with! And that number of people is much too small for us to be emotionally and spiritually healthy.

Or consider another potential impact. I have complained in the past about the lopsided distribution of men and women on the forums. The problem is, where are the other men, and where are they going to get the support they need? Well according to one social worker I spoke with about the matter, they aren’t going anywhere. They are just going without the love, care and support they need. Maybe the effect that I am talking about here is playing a role. But regardless, I think that it is high time that we reclaim the true meaning of intimacy as profound emotional and spiritual connectedness and reject the hyper-sexualized context into which it has fallen.

If you look up intimacy in a dictionary, you will see that the first synonym is often closeness. But for me, at least, this first-order approximation is lacking because I don’t want to just be close to someone, I want them to know me and to understand me. But more than that, I want to be able to know them and understand them because, you see, real intimacy is always a two-way street.

The real meaning of intimacy.

The next thing to notice about intimacy, and perhaps this is why true intimacy is rare in our culture, is that it takes time to develop. Intimacy doesn’t come together over an occasional cup of coffee at work, talking about baseball scores. It grows slowly as people become deeply known to each other by discussing topics that expose who we are and what we stand for. Moreover, intimate conversation can be difficult because we soon discover other things that are needed for true intimacy to grow and flourish. For example, people are not all the same so we need to be able to appreciate the differences between us, and accept each other for who we are – not who we might turn into someday. Likewise, we have to be willing to set aside making judgements because we might not like everything that we see.

In addition, there are other risks to losing your “invisibility cloak.” True intimacy is risky, and the biggest problem with people knowing you is that, well, people know you, and people are notoriously unreliable. Unfortunately, there is a small percentage of folks that actually enjoy making other people feel bad, and someone who is emotionally open forever carries a target on their back. If we are to be truly intimate with each other, we need to be open to exposing to each other who we really are at our core. It means I need to let you see my hopes and dreams, while simultaneously laying bare my fears and pain – as well as the scars that life has given me. I must bring forth into the light all the dark, injured or damaged parts of my soul so they might be healed. True intimacy requires honesty at an unprecedented, and oftentimes uncomfortable, level.

In short, true intimacy is an extraordinary act of faith, and it is not a process to take on lightly or cavalierly. Please don’t take that statement as being in anyway judgemental. You have your own decisions to make on this matter, but I have already made mine. For myself, I am deciding for intimacy, openness, and transparency. I have spent too much of my life in an emotional bunker where only a very select few were allowed in, and today I am reaping the result of those decisions. I am 66 years old and while I have friends, most of the people that I was ever really close to are either dead, or soon will be. This distortion has resulted in me having a hard time hearing compliments because I always say to myself, “Oh yeah, you say that now. But you wouldn’t if you really knew me.” The solution again is openness, transparency, and intimacy. When you are open with people around you, that excuse for avoiding an emotional connection goes away.

But there is far more important point about intimacy that I need to make, and that is about the relationship between intimacy and love: the one leads to the other. I dare you to learn to deeply know and understand someone and not start loving them on some level. I think that this relationship is why when comparing Faith, Hope and Love, Paul says that the greatest of them is Love. When you have received everything that God has in store for you, neither faith nor hope will any longer be needed. However, love comes from knowing so it will continue to exist and will even thrive as real intimacy grows over eternity.

And that point serves as an excellent segue into my last comment.

Regardless of what your decision might be about openness and transparency, there is one point about intimacy that is unavoidable. The simple truth is that no one is ever truly alone. As I pointed out a week or so ago using a passage from the Psalms, there is no place where we can go that God is not already there. Likewise, there is nothing that we can do to hide who we are from God. Consequently, when God says that He loves you, you shouldn’t doubt that love. The truth is that God doesn’t love us in spite of knowing us, rather God loves us because He knows us.

In Christ, Amen ☩

A prayer for when you are feeling invisible…

“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 intimacy of your presence in my life. But today I want to bless you especially for the ways in which your intimacy can draw us together. Thank you Lord, for my family and friends, and all those to whom I am drawn close in Your love. Please show me how to reach out to those who do not feel Your presence and give the me grace to help draw them into Your healing light. Amen”

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Loneliness – Dealing With Loss

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.

So let’s take another trip around the roller coaster. In general, Janet’s condition is much better and she is back to watching TV and, for now, isn’t wanting to sit alone in the dark. The perseveration, on the other hand, is worse and so she and Frannie are arguing more. Then to top things off, I was out of work sick three days this week.

Note to self: Next time you are home sick and feeling like dog-dirt, don’t try to work on an emotionally charged post. Crying (copiously) and coughing don’t go well together. Just sayin’…

Something that I have been trying to track down for a while now is the source of the intense loneliness that I am experiencing. Over this week and next, I want to look at some of the sources and resources that I have identified. Note that some of these sources will be common to all caregivers, while others may only apply to men. I don’t know – we’ll see.

My first thought was that the sense of being alone was related to Janet’s inability (or at times unwillingness) to say, “I love you.” This is certainly a common enough complaint. I have read many dozens of heartbreaking posts on Facebook with the same refrain: If only I could hear my husband/wife/child/mother/father tell me that they love me just one more time, but now they are apathetic and distant – or conversely they are angry and abusive.

Unfortunately there is a lot of bad advice being handed out in response to these posts – often by people who, though presumably well-intentioned, are in fact far more interested in maintaining the facade of normality than they are in solving any problems. Typical of this sort of response was one I read the other day that asserted, “HD or no HD, no one has the right to treat you that way!” This statement has so much wrong with it, that it’s hard for one to decide where to start. The main issue for me, is that the speaker clearly has no idea how devastating a disease HD is for the patient. Instead, they seem almost totally fixated on their pain, their problems, and their rights.

If that is your view, let me tell you buttercup, HD isn’t a head cold that you can get through by “toughing it out.” It is also not a choice like drinking or drug abuse. And your loved one is certainly not faking it or trying to selfishly manipulate you. Rather, you and the afflicted are living in a nightmare reality where any sense of “normal” is at best wishful thinking, and at worse a cruel hoax. If you haven’t grasped this fundamental truth, you need to do so now because there are no easy ways out. There are, in the end, only two options: you can choose to stay and be called a saint, or choose to leave and be called an asshole. In either case, the label will be correct. There are no other alternatives.

Then there are those who will say, “Oh, but what about the children? You have to protect the children!” That is undoubtedly true, but there are some hard truths to be recognized here as well. Children learn from what they observe. If they see Mommy or Daddy knowingly and mindfully sacrificing themselves out of love for a spouse or another loved one, the children will learn the depth of commitment and the holiness of sacrifice.

If, however, they witness Mommy or Daddy abandoning a loved one when the stuff starts to seriously hit the fan, they will learn that there are limits to the love of Mommy or Daddy. And let’s not forget that we are talking about an inherited disease. They will also learn that if I develop this disease, Mommy or Daddy will have no qualms about abandoning me too.

But even if they don’t inherit the gene, the problem of “limited love” still exists. The children can and do start obsessing about what else could cause them to be abandoned. What if I’m gay, or start drinking, or use drugs, or marry someone they don’t like, or fail at school, or start practicing a different religion, or wear too much makeup, or … ?

For her amazing first album “Jagged Little Pill”, Alanis Morissette wrote an autobiographical song named Perfect. This song is pertinent to our current conversation, because the last line has the parent affirming:

We’ll love you just the way you are
If you’re perfect.

Yes, by all means, let’s “protect” the children – but from what? There is no demonstrable benefit to shielding even small children from harsh realities. In fact, children are amazingly resilient when it comes to dealing with adversity as long as they know that they are safe. To see what I mean, think about the kids that are suffering from juvenile HD – like an amazing 13 year old girl I know about in Michigan who will likely not live to see 20. Her strength and courage is truly humbling. And then there are the siblings who like that girl’s two big sisters and little brother take it upon themselves to be best friends, advocates, playmates and defenders for their sick sister, even though they know full-well the inevitable outcome.

Finally, what is all this talk about rights anyway? If someone was injured in a car wreck would you go running up to them and demand to know who gave them the right to bleed all over the street? Well, maybe if you are in a Monty Python skit, but no rational person would behave in that way. When you are cut, bleeding is not a voluntary act. However, expectations change when someone’s brain is dying, suddenly the sufferer becomes responsible for all of their symptoms, and are held accountable in ways that no other injured person is ever expected to be.

So if that comment is typical of the bad advice that is out there, what constitutes good advice? Well, first and above all, learn as much as you can about this disease so you can always maintain a realistic view of what is happening and what is possible.

But the most important thing that we can do to handle apparent rejection and/or anger from a loved one is to remember that regardless of how bad or random things feel, there is someone in control: God. Of course people will put forward objections to this obvious truth. For example, there are the people who claim to be atheists because they couldn’t worship any God that would create HD. As much as I would love to address this view, there are so many fundamental errors in that one statement that addressing them in even a cursory way would take us far beyond the scope of this post. Still if you want to discuss it, send me a comment and we can talk. Alternately, C.S. Lewis wrote an exceptional book on this general topic called The Problem of Pain. As it so happens, I have 10 copies of this book on hand and I will ship a copy free of charge to the first 10 mailing addresses that are left in a comment to me.

A far more manageable point is illustrated in this hypothetical conversation:

“If God truly loves my husband/wife/etc/etc/etc, why isn’t He doing more to help them?”

“Well actually He is, and when you think about it, it’s really miraculous what He is getting done.”

“Oh yeah? What is God doing for them that is so miraculous?”

“You. He is doing you.”

Do you think your relationship with your loved one is an accident or random chance? It is not. As caregivers we need to learn to recognize the ongoing miracle that is our life and relationship with the one for whom we are caring. As an example of what I’m talking about, consider the case of Janet and I. When Janet first started experiencing physical symptoms we were living in Knox County, Ohio. Despite going to multiple doctors she was getting a variety of different diagnoses as to the cause of her troubles.

Then “coincidentally” I lost my job and the only one I could find was in western Pennsylvania. But when the doctor there looked at Janet, he realized that there was something neurological going on and gave us a referral to a neurologist.

The neurologist that “coincidentally” we were referred to was basically a bulldog in a white lab coat. I have no idea how many things Dr Brian Cotugno of Washington, PA (bless him) tested Janet for, but his gut told him that there was something wrong and was he was determined that he was not going to quit until he found out what it was. And he did. But, a new problem arose: at that time Janet got her diagnosis, the Huntington’s Disease Society of America (HDSA) did not have a Center of Excellence (COE) in western Pennsylvania. In fact, the nearest one was 4 hours away at the OSU Medical Center in the state we had just moved from!

Then “coincidentally”, less than a week later, the company I worked for got a contract at Wright-Patterson AFB and decided to move me to Dayton, Ohio to service it – 45 minutes from OSU, door to door. While going to OSU, Janet was under the care of Dr Sandra Kostyk, a wonderful doctor who taught me my first fancy medical term: Perseveration.

Then when Ohio winters started getting too bad for Janet and we started looking to move south, I was able to find a job in Houston, Texas which “coincidentally” has a COE at the UT Medical Center (where we are now seeing Dr Erin Furr-Stimming), and the management company that owned the apartment complex we lived in also “coincidentally” owned a complex in Pearland (just south of Houston) which significantly lowered the cost of the move by allowing all our deposits to be transferred. And now I am working for a company the CEO of which “coincidentally” had a brother that died of HD and so understands at a very personal level what I am going through.

And these are only the major “coincidences” in our lives. Now I suppose that all those things could have just lined up in the right way by accident, but at some point it requires less faith to simply believe that God is in control.

In Christ, Amen ☩

A prayer for when you have lost so much that you are feeling alone…

“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 always being present in our lives. But today I want to bless you especially for the ways that support and reassure me when I feel like I have lost so much – or perhaps everything. The problem is that I can’t see things from your perspective. Teach me to believe without seeing and show me how to guide others along this same path. Amen”

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A New Normal

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.

When Janet was admitted to home hospice, part of the documentation that we received was a brochure that described the stages of dying. One of the big markers that the booklet mentioned was that the person begins to disengage from “normal life”. It then goes on to describe them sleeping more and more, and being involved in this life less and less. This seems to be what Janet is beginning to experience. She is sleeping in her wheelchair large parts of the day and at night prefers to sit alone in the dark. No TV, no lights, nothing…

A couple weeks ago, I wrote a post about the circumstances under which you could find yourself serving as an advocate for another person. The situation where I spent the most time was where you have the position thrust upon you. For example, when I married Janet the possibility of a disease as devastating as HD never crossed my mind, yet 34 years later, here I am.

Unfortunately my experience isn’t that unique, the online support forums are filled with stories of children caring for parents, parents caring for children, and folks of all ages caring for siblings and spouses. Rarely are these “amateur” caregivers consulted or asked to help, but out of a sense of love, or loyalty, or duty, they step forward anyway to fill the breach – often without fully understanding what they are getting themselves into.

By the way, just to be clear, I have nothing but the utmost respect for people who take on these challenges. On the support forums I regularly read stories of amazing heroism and boundless heart that, to be frank, leaves me simultaneously in awe of what they are doing and a bit ashamed of my own kvetching.

But I also read a lot of posts from people who are in way over their heads, and who feel like they are drowning. Now there is a feeling I can relate to! In fact at one point in my life I felt like I was being constantly “waterboarded” emotionally. I never quite drowned, but I never quite got a full breath of air either. Now, though, I am clearly out of the “drowning” category and, while I still have a long way to go, I feel like I’m at least on my way to “heroic”. So what made the difference for me?

Looking back, the real turning point came when I realized that I had bought wholesale into the myth of a static life. Or to put it another way, I believed that there really was such a thing as “normal life” where one day followed the last and didn’t vary very much. Oh, there might be high spots like having a child, or going on vacation, but soon things would smooth out again and be “normal”. In the same way, I might encounter tragedies like divorce or losing a job, but again, “normal” always seemed to reassert itself.

Of course when I describe it in this way, it’s easy to see the mythic nature of a belief in the “normal”. For example, I can easily recall experiences that left me fundamentally changed – for good or bad. So why did I want to believe so badly is a life that was fixed and static? I think it was the same reason that people believed, for centuries, in a flat earth that was the center of a static universe where the stars were angels sitting on crystal spheres that danced around our heads producing a celestial music – it was simple.

You see, if everything is fixed and static then every day will be like today and who I am and what I believe that is adequate for today will be adequate for forever because nothing ever changes. But what if you don’t believe, or have been told, that you aren’t even adequate to meet the challenges of today? Well it still works because you at least have a fixed target in the form of lists of certain, unchanging rules to follow. In short, fixed and static is easy because it doesn’t require much thinking. All you have to do is keep your mouth shut and do what the government and/or church tells you to do, and you’re golden.

The only problem, of course, is that all this apparent simplicity isn’t real. Science figured out centuries ago that the cosmos in which we live is an active, dynamic place where the only real constant is that there are no constants. If we are honest, we have to admit that even God sometimes isn’t that comforting because He’s uncontrollable, unpredictable and is often up to things that we don’t understand or particularly like. To see what I mean, read the book of Jonah sometime.

Even at a personal level, the dynamic nature of the world in which we live brings with it some rather messy implications. Assuming for instance, that I am is adequate to meet the challenges of today, I may be found wanting when tomorrow arrives because the one thing I can be certain of is that tomorrow will be different from today, and often in unpredictable ways. Moreover, if I am not making the grade today, tomorrow will likely be even worse because the rules that people create are constantly becoming more complex and arbitrary, almost guaranteeing that I will break one.

No wonder my head went into a tailspin when a doctor told me not only that Janet was going to die, and what she was going to go through before the end came. The first casualty of the Huntington’s Disease was my sense of “normal”, and the really hard part was that HD didn’t slowly wean me away from normality, it just cut me off cold-turkey. No more normal, not now, maybe not ever.

It’s not a pretty picture, but it is the environment in which the “heroic” caregivers thrive. I’m learning that the key is to be as fluid and dynamic as the situation that I am in. In embracing this dynamism, I have a great role model: God. In one of the most sublime paradoxes of scripture, God is both lauded for stability and steadfastness, and characterized as wind, water or flame – all dynamic ever-changing forces.

What I’m talking about here has been called living “in the moment”. However, when we hear most people talk about living in the moment, it’s often a watered-down version of the concept that accepts the past and a future, but with the goal of simply not being unduly influenced by either.

What I’m learning that I need to do is to live in a “now” that exists totally divorced from both the past and the future: The past, because it is the home of disappointment and regret. We have talked before about how damaging it is to live in a world of “If only…”. But the past is also where we find what is “normal”, “usual” or “typical” – all of which are things that, given my current circumstance, only exist to taunt me.

Likewise, the future is where I find fear and worry based on and driven by, “What if…”. If these concerns can be addressed and managed, like we talked about last week, thinking about the future is a good thing. Unfortunately, in my experience, healthy planning can all too easily turn into obsessing about the uncontrollable.

So living in the moment can be messy too. But we are not alone in our quest for the divine now, as in all situations in life, there is Emanuel: God with us – and that is a source of great hope!

So, while this resolution might not exactly be a “happy ending”, it is where I am right now, and now, and now, and now, and…

In Christ, Amen ☩

A prayer for when you have lost touch with what is going on now…

“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 limitless expanse of eternity that will be our eventual home. But today I want to bless you especially for that infinitesimal slice of eternity called “right now”. Thank you for providing for my needs right now. Thank you for the patience, strength and wisdom that I require right now. Lord, show me how to reach out to those who are mired in worry and regret from the past, or despondent over worries about the future, and proclaim to them your grace, your peace, and your now. Amen”