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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 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”