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You Don’t Have to be Alone

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

This week is something of a landmark or dividing line. This Sunday is the last one where Jean and I will be in church as individuals. By the next time we gather with the rest of our little fellowship, we will have undergone an amazing transformation to become simply “The Porter Family.”

For that reason (and many, many others), it seems appropriate to us to begin recapping the past three or four months and consider some of the steps that we have gone through in the process of recovery – and highlight what is still left to be done. You see, remarriage is, for us, a wonderful milestone, but if you think about it, a milestone is just a marker on the road you are traveling. And your road will likely be different from ours, it may pass that same marker, or you may find yourself soon standing before a different one perhaps labeled, “Start Second Career” or something else. Literally, God only knows.

And speaking of roads being traveled, this week Jean and I will be on a post-nuptial road trip visiting family. Consequently, next Sunday we will not be posting, however we will be back June 13th.

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A recurring theme in many posts that we read on support forums – as well as life in general – concerns loneliness and the avoidance thereof. And there are good reasons for this concern to be so ubiquitous. For example, it is often the first symptom that the caregiver experiences personally as they stand by powerlessly while dementia begins to slowly eat away at the person they love.

This situation is an example of a condition called “Ambiguous Loss” – which includes the cruelly painful process of mourning the passing of someone whom you love, but who is still physically present. In fact, one of the things that God used to bring us (Jean Barnes and Michael Porter) together was the shared memories of navigating those terrible waters. Waters filled with horrifying icebergs in the form of doubts and questions about who we were and where we were really going.

While we survived that period of our lives, it certainly wasn’t pleasant. One of the keys to that survival was learning to draw a distinction between two very different, yet confusingly similar, ideas. What we are speaking of is the difference between being by yourself, and being alone. We have learned that drawing a clear, unambiguous distinction between the two is critical because when one is caring for someone else, one of them is just part of your daily routine, while the other is an illness that must be eradicated to the greatest extent possible.

To see what we mean, consider that being alone and isolated is normal and even to be expected when caregiving – especially in the midst of the current Covid-19 panic. However, aloneness is not inherently a problem. Many people enjoy hiking, climbing, fishing, hunting or other solo pursuits out in nature. And despite being the only human being in miles, they nevertheless report a deep sense of connectedness to God, nature, the universe, etc.

Being alone, on the other hand, implies a feeling of being disconnected from what is going on around you, of being dissociated from everything beyond the confines of your own skin. Hence, someone can feel very alone even in a crowded room. Quite rightly, the medical profession has identified this kind of dissociation as a pathology.

“The major characteristic of all dissociative phenomena involves a detachment from reality, rather than a loss of reality as in psychosis.”

Unfortunately, this quote illustrates for us that dissociation is a pathology that society pushes relentlessly in nearly every realm of life – at times bordering on psychosis in the destruction of reality in favor of an oxymoronic “personal reality” or “individual truth.”
But getting back to caregivers, we have suffered through many things in common over the course of our separate caregiving journeys, but there are always many unique aspects, as well, so we’ll speak separately for a bit…

Michael:

A problem that I think is probably specific to men is that we tend to (as my sister once described it) put all our eggs in one basket. Or to put it another way, we tend to concentrate much of our attention on just one person: our wife. Consequently, when she begins to exhibit the signs of dementia, we tend to become lost very quickly.

For myself, this issue was particularly troublesome because my Janet was always the disciplined, logical one – then, seemingly overnight, it was just all gone. I remember thinking that my life felt like the rope to my anchor had been suddenly cut and I was adrift with no solid point of reference that I could guide on. During that time, I remember feeling like one of us was going insane, but which one was it? Looking back, I am amazed at how willing I was to throw myself under the bus to maintain the image of Janet that I had in my head.

I was totally unprepared to deal with the anger, irrational behavior, and violent outbursts. I had no idea, at first, what I should do. I remember crying out, “Why can’t I have Janet back for just five minutes so she can tell me what to do?” But that never happened.

In the end the image became unmaintainable and I had to come to grips with the objective fact that Janet, as I had always known her, was gone. And even more horrifying was the possibility that the person that I thought she had been, never really existed – that the “personality quirks” I had always recognized were not the legacy of an abusive childhood that could eventually heal, but symptoms of a disease that would only get worse.

There is no isolation so profound as the one produced when the person being missed is still present physically but is absent in every other possible way.

Jean:

If you had parked outside my house any time during 1987, you would notice a nightly routine. Our two children would be off to bed by 9:30 and their bedroom lights would go off. Soon the living room and master bedroom would go dark as we all went to sleep. Then about 30 minutes later, the living room lamp would come on. It was me. I was reading again every brochure we had accumulated about the relatively unknown condition called Huntington’s Disease. I would spend an hour or so reading and crying, begging the Lord to please not let us have to deal with HD.

My husband’s grandmother had died of HD a year before we married. Now Don’s dad was in late stages of the disease. A few months later we buried his dad in Indiana, and to my horror, I began seeing early signs in my husband. Don’s health continued deteriorating and in 2006, we laid him to rest. We had been married almost 35 years and I felt much loneliness. My identity as a wife and helpmeet to my husband disappeared. Then, just seven weeks after my husband died, his older sister also died in her sleep, of HD.

God gave us comfort and I felt surely my children would escape HD. My son seemed healthy, but then I began seeing signs of HD in my precious daughter. Jennifer was an accomplished church pianist and loved using her talents to serve the Lord. She and her husband had two precious sons that they had adopted.

About this time, her husband forced her out of the house to make room for another woman. Jennifer came to live with me. One of my greatest joys in life was taking care of her during her last years of life, even though every day was totally exhausting. In Feb. 2021, God called her home very unexpectedly. I knew she was getting weaker but surely did not expect her to die that day. The following days were a blur of wondering why I was even alive, and what my purpose in life was now? HD had now taken two of my immediate family – and five altogether.

So with these problems and experiences, what did we do? Well, ultimately we both came to see that our salvation lay, not in trying to avoid reality, but in fully embracing it. You see, no matter how difficult it might be, reality is – well, real. So in that sense, there is really no alternative – except perhaps a path resulting in extreme detachment or perhaps even psychosis.

But accepting reality means accepting all of what is real – not just the parts that we like or are ready to accept. For example, you might like the happy pleasurable parts of life but want to reject the messy bits, or you might find joy in creation while feeling uncomfortable with the idea of a Creator. Likewise, a common meme shows a tree growing up through a split that it has created in a large rock.

The picture’s intended lesson is about persistence and asks us to concentrate on the tree. But the rock also exists, and the picture shows the result of decades or even centuries of “contention” between rock and tree. While things look good for the tree right now, the final result is still far from certain. After all, a forest fire could still come through and destroy the tree while leaving the rock unscathed.

Perhaps a better lesson is that from the human perspective, reality is seldom a flash of life-changing enlightenment. Rather, for created beings such as ourselves, reality is always being revealed as a curious mixture of “is” and “is becoming,” where we can never be absolutely sure of all the final details. However, that uncertainty doesn’t mean that we are adrift with no solid point of reference.

To the contrary, verbs often imply nouns. For example, our existence as created beings implies the existence of a Creator. And the existence of blessings is a sign that the Creator cares about His creation. A point that brings us back to this post’s original assertion: You don’t have to be alone.

Even when times are at their darkest, you will discover that, if you look for it, there is always enough light to illuminate at least your next step. Our Creator has known for as long as there have been human beings, that it is not good for them to be alone.

So He is always there, and oftentimes He brings into our lives other people to accompany us and support us on our journey – sometimes as a friend, sometimes as a sibling, and sometimes as a spouse.

In Christ, Amen ☩

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A prayer for when you are feeling alone and disconnected…

“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 light and warmth that You bring to our world. But today I want to bless You especially for those loving souls that You call together to surround us with comfort in our pain. Please show me how to be such a person to others. Amen.”

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Loneliness Redux

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

If you would like to read our story from the beginning, you can start here: How We Got Here…

This week has brought a big answer to prayer.

As I have mentioned before, I lost my job in early September. This change allowed me to care for Janet full time, but our finances were beginning to show the strain. To make a long story short, I was approached for a position up in the Fort Worth area. This will complicate matters, but there are reasons that I believe that this is the right step for now. To begin with, when the recruiter asked me how much I would need in salary, I took my old salary, added $6k to it and gave him that number. To be frank, in the current business climate I didn’t think that figure was even possible but I figured if I saw that, it would be a sign that this was the right move for us.

This week, after interviewing with the company twice on the phone, they sent me an offer letter $5k higher than the “unrealistic” number I had proposed! When I told Janet about the job, she smiled at me as best she could and said, “I’m proud of you.”

In terms of Janet’s condition, she wakes up very infrequently now, and hasn’t wanted to eat anything in three days – maybe four by the time you read this. There is no sign that she is in any discomfort or pain. I have had a lot of time to think about all the things that she has done with her life and despite everything, my main feeling at this point is one of gratitude for being a part of it all.

One of the things that distresses me most at this point in my life is that the lack of recognition the everyday people seem to be getting for their deeds of heroism and accomplishments. The thing that makes this world great is not so much the actions of a few “greats,” whether they be monarchs, elected leaders, or faceless bureaucracies. Greatness comes from the thousands of unrecognized actions by the “common” people.

In 1942, when WWII was in its darkest moment, Aaron Copeland wrote a piece to acknowledge the millions of “common” men and women that had died and were about to die in the great cause of beating down fascism. Called Fanfare for the Common Man the piece’s intend was to laud the life contributions of people who do not find their way into newspaper headlines. In fact, as the inscription on the Tombs of the Unknown Soldiers reminds us, sometimes even their names are lost – and are only remembered by God.

In a way that is enough, but in another it is not. Today too many people take for granted the world in which they live and disrespect the past because it does not measure up to their own personal standards. The greats are belittled and the common are ignored so that in the end, all that is left is self-centered grumbling. Although there are no easy solutions to this problem, we do have a place from which we can start. When a loved one dies, take a moment to write a tribute to who they were and what they, with the grace of God, accomplished – warts and all. Then post that tribute online, send it as a letter to the editor of your local newspaper, include it in an obituary, even send it your political representatives. That will be a fitting tribute and will lift up future generations.

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I have written before about one kind of loneliness that caregivers can experience. That is where you are lonely for the companionship that you used to derive from the person you are caring for, but now no longer can. Then there is the loneliness that can result from the feeling that no one really knows you or understands you.

But this week I want to talk about another kind of loneliness. This impersonal loneliness comes from being surrounded by people who have no idea what you are going through, and so can’t even begin to relate to your feelings, needs, or priorities. It goes far beyond simply not understanding you, it is like they are living on a different planet or in a different world from you. This loneliness is made all the worse because the people creating it have no understanding of their own blindness. They go through life blithely assuming that their opinions are not just their opinions, but rather are normative for the whole world. Consequently, it is inconceivable to them that anyone should feel any different than they do – and if you do, well obviously you are the problem.

So where do these jerks come from? That’s the bad news. Too often those jerks are you before you became a caregiver. Looking back, it should be obvious that being a caregiver fundamentally changes your perspective. In my life, Reality has wrought that change using two main tools:

  1. Different experiences – When one is living a life of unchanging sameness, it’s easy to fall into the trap of thinking that the world around you right now is just the way life is. Much is said today about people living in an “echo chamber” that reinforces one set of ideas to the exclusion of all others. However, experiencing differing things breaks down the walls of even the strongest echo chamber. One thing, therefore, that all caregivers must fight against is the desire to run back to some (probably mythical) sense of “normal.” Instead we must embrace the changes that are flooding our lives and the wisdom that the changes are producing in us.
  2. Challenges to my belief system – Ever had the experience of thinking to yourself that “God will take care of me if X, Y, or Z happens,” only to have X, Y, and Z all happen simultaneously? These sorts of experiences offer two sorts of opportunities. First, they allow you so see that what you previously held as a theoretical likelihood, is a fact. In other words, before you believed in God’s care, now you have an actual experience.

    Second, they give you the opportunity to stretch and grow strong. For example, I once read about a teacher who brought into class a clutch of chicken eggs that were ready to hatch. As the students watched the first couple of chicks struggle to break out of their shells, they began to feel sorry for them, so when the other two eggs started to hatch the students carefully cracked the eggs open for them so they didn’t have to struggle so hard. However, it turned out that their help really wasn’t very helpful at all because the last two chicks were weak and it took them many weeks to catch up with their two older siblings.

Finally, in closing, I feel like I need to offer one disclaimer: All lessons learned in life are provisional – but not because as Reality changes, it does not. The Ultimate Reality, God, does not change.

It occurs to me that “immutability” might be, on a practical level, a useful gauge in discovering the identity of a person’s god. It is that thing which cannot (or must not) ever change. Too often, the ultimate god today is named “Self” and produces bad caregivers, because being a good caregiver demands that one systematically minimize “self” for the good of the “other” – an anathema to the cult of self.

But if the One that I am trying to learn about is truly unchanging, why is my understanding always provisional? Because, for one, the student (me), far from being an apt pupil, is, in fact, often rather slow-witted. But more importantly, the subject of the learning is truly infinite in depth and scope. For example, I learn that God is Love – and that is certainly true. But now the hard part: Define Love. That lesson will likely take me centuries to grasp.

The good news that I can always depend on, however, is that the Teacher is slow to anger and abounding in steadfast love. This news holds a lot of comfort for us. But what about the “jerks” I mentioned before that haven’t had the experiences that we have. We could give into the anger and scream at them, “You don’t understand my world!” However, a better path is to forgive as we are forgiven – remember we used to be part of them.

In Christ, Amen ☩

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A prayer for when 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 Your creation. But today I want to bless You especially for being a stable reality even when I’m not sure where things are going. Thank you for being the solid rock upon which I can stand. Please give me the confidence to continue walking even when all I can see is a tiny pool of light by my feet. 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”