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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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Extraordinary Times

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.

Janet continues doing well on her medicine in terms of sleep but emotionally things are getting worse. Apparently, saying just about anything will now earn me an invitation to, “go to Hell”. I’m ashamed to say that one time I replied, “Too late, I’m already here!”, and then had to apologize. She is also getting increasingly sensitive to loud talk – which strikes me as odd for someone who is (a) half Italian and (b) loves to watch political programming on TV.

In other news, the world’s obsession with the Coronavirus caused some interesting issues this week. I know that by now it’s almost a cliche, but we really couldn’t find any toilet paper. In addition, after last Sunday our church decided to move our services completely online. As the situation stands now, where we are in Texas, all the restaurants are closed except for takeout. The schools are closed for the remainder of the year, and I loosed a rant on the world via Facebook decrying the number of “simpering idiots” in my country. It has been a long week.

To state the obvious, we are living in unusual times, and such times call for unusual actions. I typically use this space to talk about matters related to grieving and caregiving – particularly in the context of neurodegenerative diseases. However, I think that the time has come to have a conversation that looks at this calling to care in a broader context. And the place to start that conversation is with the question of empathy.

Empathy (noun) – The ability to understand and share the feelings of another person.

For the past 3 or 4 decades at least, we have been bombarded, as a culture, by a plethora of self-help books and programs that (whether religious or secular) all preach the same basic message: “Take care of yourself, no one else will.” In fact, this idea has become so prevalent that to feel in any other way is sometimes seen as a pathology, an illness to be treated and “cured”. We are told that it is not up to us to worry about others – we have “professionals” that will do that job for us.

History shows that this philosophy can survive pretty well as long as the majority of the people who believe it are not experiencing any major problems themselves. Unfortunately, that is not the situation that we are in now. While we are not responsible for the virus itself, we are in the middle of a mess that is, to a large extent, of our own making. We have lived for so long thinking that we can depend on surrogates to take care of the needy, sick and infirm that we have forgotten that Jesus said those were things that we were to be doing ourselves. Then suddenly, the load gets too great, and the systems which we created so we didn’t have to get our hands dirty, collapse. I wonder how many people will die because neighbors have forgotten how to care for each other.

Another challenge is that going back to the 1930s authors such as Ayn Rand have taught that selfishness is good and caring for others is bad because it makes them weak, and in turn makes the society that harbors them, weak. The result is a kind of functional eugenics that is based on one’s ability to perform, rather than their DNA. I have even heard modern authors speak in favor of banning all charities, public and private, for this very reason. In addition, there are cities here in the US, where giving to the homeless is actually against the law. I wonder how many more people will die because those in power deem them to be of no further use to society at large.

Take those two sources of mortality together and you will certainly have a very large number, and a number that will continue growing indefinitely, unlike the deaths from the Coronavirus which will eventually subside.

So what are we to do? What is the solution? Those of us who care for people with neurological conditions have, I believe, a unique perspective on this problem. The source of this perspective is that we deal with people on a daily basis that can be obstinate and self-centered, and are absolutely convinced that they are in the right – just like the people who irrationally go into stores and buy up all the toilet paper, hand sanitizer or food. We know that the way to effectively deal with irrational people starts with empathy to understand on a deep and personal level, the feelings that drive their irrational behavior. In this way, empathy serves as the glue that holds society together and keeps it from degenerating into a mindless mob.

It’s time for those of us who are caregivers to step out of the shadows and start talking about what we do, and why we do it. We need to start making the case for empathy, for caring, and for being truly human. But that empathy needs to be built on a firm foundation, else it will become just one more “flavor” of pop psychology that is all the rage today, but is quickly forgotten tomorrow. The only foundation that really matters is reality. For example, the founders of the United States, started this way,

“We hold these truths to be self-evident that all men are created equal, and are endowed by their Creator with certain inalienable rights…”

In this opening to the Declaration of Independence, the authors laid a powerful foundation based on the “self-evident” reality that we live in a created world. And moreover, the Creator who is responsible for this world is still fully involved with the creation, as seen through the on-going endowment of gifts to all of humankind. Oh, and don’t miss the threat to tyrants that is implicit in the word “inalienable”.

When you start from this same place, empathy becomes yet another gift from our creator God to help us draw closer to each other. But beyond that bare definition, what does it really mean to be empathetic? And how do you learn to be more empathetic?

Taking the second question first, there is actually a lot of discussion going on as to whether people even can learn empathy. Some say “Yes” because it’s just a skill like any other human skill. Others say “No” asserting that when you were born you were either empathetic or you’re not. My view of the matter is somewhat different from both, I would say that everyone is empathetic to one degree or another because the ability to feel empathy is something that is built into our human nature as part of our humanity. In the past I’ve written about what I referred to as “fingerprints” that God left on our being when we are created, I believe this is another one. So perhaps the better question might be how do I learn to express empathy more and not continue to suppress who God meant me to be?

The key is a mindful practice of the definition given above, combined with prayer. Growth in this aspect of life doesn’t happen by itself. You need to be intentional in your daily interactions with others, looking for their needs and asking for God’s guidance. Above all, being empathetic does not mean to simply feel sorry for someone, empathy is actually feeling and understanding the emotions that they are feeling. Likewise, empathizing with someone does not mean automatically that you agree with them – just that you understand where the feelings are coming from. In a way, this is sort of like the distinction that we draw when dealing with negative behavior from our HD loved one. We say things like, “It’s not your mum saying all those bad things, it’s the HD.” In the same way, empathy allows us to understand and recognize the feelings behind the behaviors of people with whom we have profound differences. This clarity, in turn, allows us to see that they aren’t a horrible person but rather that they are fearful, or afraid, or injured in some way.

It seems that you can’t turn on the TV without hearing someone decry the “lack of civility” that someone else (it’s always someone else) is causing. However, the real problem is more often a lack of empathy, which leaves open the door for the demonization and judging of people. Whether this lack of empathy is the result of an inability to care, or apathy over the need for caring, these last few weeks have demonstrated that the reason doesn’t really matter. Losing the ability to empathize with others will kill us all.

In Christ, Amen ☩

A prayer for when you are feeling angry…

“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 continued involvement in the world that You created. But today I want to bless you especially for giving us the ability to empathize with others and in so doing, help to bear one other’s burdens. In this work we have the ultimate example of Jesus to guide us, who came down from heaven, and taking on the body of a man, lived a life of empathy. Show me how to follow this example, use me to heal the culture of fear, hopelessness and death that surrounds us. 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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… but what do I need?

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

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

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

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

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

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

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

Y-e-a-h… Welcome to the family…

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

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

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

My answer was short and sweet:

“Yes it is, and no you’re not.”

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

A prayer for when you are needy…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for all the ways in which You provide for all my needs. But today I want to bless You especially for even caring about my needs. You certainly would not have to, but in Your immeasurable love, You do. Please show me how to care for the needs of others as You care for mine. Amen”