Posted on

Caregiving and the “I-Word”

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 we’ll continue the process of revisiting some of my posts written over the past year and a half, and giving them a bit of a face-lift.

As in the past, the procedure has been for Jean to go through the past posts and identify one that she felt was an “evergreen” topic. This one is the sequel to the one that we presented last week. It originally ran February 16th of 2020.

One big change worth noting is that, in addition to assisting me in identifying posts, my soon-to-be wife Jean has also taken over the editing duties from my sister in Indiana. More on the “soon-to-be wife” comment later.

❦ ❦ ❦ ❦ ❦ ❦

In the past, we have considered loneliness from the standpoint of things a caregiver can typically lose due to the progression of a neurological condition. 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.

With that in mind, there is one remaining piece of business that needs to be handled. You see, in the past as I considered my situation, I saw that I was surrounded by people who loved me in a multitude of ways. Moreover, many were even willing to demonstrate it in the form of hugs, gentle touches and reassuring words. I received this kind of support from family, friends from church – even people I knew from online forums and local support group meetings. While loneliness does often result from not being told that you are loved, that didn’t seem to be at the root 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 that we went to was always great, but there were other circumstances that were not so positive. I can remember, for instance, going to an Urgent Care clinic and being treated like little more than the bus driver that got her there. If you think about it, it actually made perfect sense. After all, Janet was the patient, not me. Still, I had gotten used to being part of her care team, and then suddenly in those situations, I was 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 invisibility and loneliness turned out to be 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. 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 become 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 actual 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 could I 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.

Or consider another potential impact. I have complained in the past about the lopsided distribution of men and women on the forums. The question 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. Regardless, I think that it is high time 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. 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. 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 next thing to notice about intimacy, and perhaps this is why true intimacy is so 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 that other things 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, I have to be willing to set aside making judgments about the things that I don’t like.

In addition, there are risks associated with losing your “invisibility cloak.” True intimacy is risky, and the biggest problem with people knowing who I am is that, well, people know who I am, 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 I am to be truly intimate with another, I need to be open to exposing to them who I really am at my core. Or said another way, 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 painfully uncomfortable, level.

The bottom line is that true intimacy is an extraordinary act of faith, and it is not a process to be taken on lightly or cavalierly. Please don’t take that statement as being in any way judgmental. 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.

In the not-too-distant past, I was reaping the result of those poor decisions. I was 66 years old and while I had friends, most of the people that I was ever really close to were either dead or soon would be. This distortion resulted in me having a hard time hearing compliments because I always said to myself, “Oh yeah, you say that now. But you wouldn’t if you really knew me.”

However, you’ll notice that I am speaking of those issues in the past tense. So what made the difference? In a word: “Faith.” The faith to keep my word and remain faithful to the vows that I made to Janet. The faith to not give up and die when she did. The faith to reach out and support someone I barely knew when she needed comfort over the death of her daughter. The faith to pick up the phone and invite the lady to lunch at a Cracker Barrel restaurant after church a few Sundays later.

To be very clear, the relationship that now exists between Jean and myself is not a reward for having done what was right. Rather it was a gift that I was only able to have because all the preceding faithful acts had changed me, turning me into someone who could see the gift and receive it. If I had not been faithful, Jean would have still been the beautiful woman that she is, so the gift would still have been there. But I would have not been able to see it, or perhaps seeing it, I would have been unable to grasp it and pick it up.

Another important point about intimacy concerns 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. (It is, after all, possible to love someone that you are not married to…) I think this relationship is why when comparing Faith, Hope, and Love, Paul says that the greatest of them is Love. As Paul pointed out, 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.

Finally, we need to remember that 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 the Psalmist so eloquently pointed out, 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 me the grace to help draw them into Your healing light. Amen.”

Posted on

Hard Truth

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…

Last week I began to realize how crazy life was getting. I had an idea to look for some of my posts written over the past year and a half, and rework/update them. I ran the first one last week and had a pretty good reception, so let’s try another one.

As with last week, the procedure was for Jean to go through the posts and identify one that she felt was an “evergreen” topic. It originally bore a title that indicated it was about loneliness – but it really wasn’t. Hopefully this title is better. It originally ran February 9th of 2020.

❦ ❦ ❦ ❦ ❦ ❦

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 façade 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 clue you in, 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 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 worst 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 a selfish jerk – or something worse. 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 is a hard truth 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 and hard truth. 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 who are suffering from juvenile HD – like an amazing 13-year-old girl I knew about in Michigan who didn’t live to see 16. Her strength and courage was 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 they 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 out there, what constitutes good advice? Well, first and above all, learn as much as you can about the disease that you are fighting so you can always maintain a realistic view of what is happening and what is possible.

But the most important thing 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 what is for them a very hard truth. For example, there are the people who claim to be atheists because they couldn’t worship any God who 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 my case with Janet. 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 who “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 there was something wrong and 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 the 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. 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 contemplating a 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. Not only that, but now I am working for a company whose CEO “coincidentally” had a brother who 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 feel no good options are left…

“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 You 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.”

Posted on

Being Your Loved One’s Advocate

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…

As I am writing this, life is moving really fast and getting everything done is becoming a bigger and bigger challenge. Then I had an idea to look for some of my posts written over the past year and a half, and rework/update them. I ran the idea by Jean – and she loved it – so we are going to give it a try.

The procedure is for Jean to go through the posts and identify various ones that she feels are “evergreen” topics. This is the first one. It’s about one of a caregiver’s biggest tasks – being an advocate for their ill loved one. It originally ran January 19th of 2020.

❦ ❦ ❦ ❦ ❦ ❦

Last Sunday, I spent a chunk of the afternoon on Messenger talking with my sister — nothing unusual there. What we talked about was the post that went live on the blog that morning. The point of the conversation was the prayer.

I humbly ask that You would bestow on me the privilege of being an advocate for them in the world.

Margie was curious about whether I intended it to be purely personal, or would it apply to all my readers. I think that part of the matter might have been my usage of the word “advocate,” which I realize, in retrospect, is a word that is typically used to communicate very specific and formalized responsibilities. Derived from a Latin root that is essentially a translation of the Greek word παράκλητος (paráklētos) the word refers to someone who is called, or summoned, to stand beside you for support – often in a legal sense. For Christians, the most well-known use of this word is when Jesus used it to describe the coming Holy Spirit.
But I want to step back for a moment and think about it from a slightly different perspective. For my starting point, I’ll take a famous quote from the Shakespearean play Twelfth Night:

“Some are born great, some become great, and some have greatness thrust upon them.”

It struck me that if you replace the words “great” and “greatness” with “advocates” and “advocacy,” the result is a pretty good description of the core of what it means to be an advocate.

“Some are born advocates, …” Most of us have known people who seemingly from the time they were born, realized that their place in the world was to stand by others and speak for them. We typically think of these folks in terms of being social workers, lawyers, or perhaps members of the clergy. But I would assert that there is another side of advocacy. Sometimes words are not enough. Sometimes actions, even strong actions, are required to “stand by” another.

Consequently, advocates are sometimes seen wearing flak jackets under desert brown or blue uniforms. Sometimes, to do their work, advocates have to don green flight suits and prepare to fight a war that is unthinkable, with the goal that it remains unthinkable. Sometimes advocates rush to be the first to respond to a tragedy so they can perhaps snatch some remnant of life from the jaws of death. Advocacy is not just about supportive words…

“…some become advocates, …” Here, we need to consider the Biblical story of the Good Samaritan. We have no idea what was going on inside the Samaritan’s head when he saw the man beaten by thieves and left for dead. Clearly, he could have crossed over to the other side of the road, like the religious men who had come by before him had done, and just kept going.

Instead though, Jesus says that he “took pity on” the man who had been attacked by robbers and so, in that moment, chose to become his advocate. A choice, by the way, that cost him time and money, no doubt disrupted the day he had planned for himself, and could even have put him in added danger as the robbers might have still been in the neighborhood. Moreover, he happily took on the responsibility to see the job through to the end by making arrangements for settling any subsequent debts when he returned: more time, more money, more inconvenience.

“…and some have advocacy thrust upon them.” I want to look at this last situation in a bit more detail because it should feel familiar to anyone who is a caregiver to someone with a chronic disease. I don’t know about you, but nobody ever asked me if I wanted this job. Nobody ever said, “Your wife is going to get this horrible disease. Oh, and by the way, you get to watch her die a little more every day. So, if you could help out, that would be grea‑a‑a‑a‑t.”

The job that gets handed to a caregiver is massive, uncomfortable, long, and so dirty that even Mike Rowe would think twice about taking it on. And it’s certainly not fair that we have to do these kinds of jobs alone or with too little support from families and friends – or even adequate training for what we need to do. Oh, and then there’s the guilt! I have never met a caregiver whose normal mental state wasn’t feeling guilty.

I would assume that we are in agreement that the life of a caregiver largely stinks. So what do we do? The truth is, the sun will come up tomorrow and we will have to do something.

A number of years ago, I went to a seminar where the leader called up to the front someone from the audience and held out two ice cream cones: one vanilla, and one chocolate. He then instructed the person to choose one. The participant got the ice cream they picked and returned to their seat happy. The leader now repeated the exercise with a different volunteer, but this time only held up the one remaining ice cream cone, repeating the same instruction: “Choose one.” The result was a spirited conversation (read: “argument”) about the nature of choosing.

The point of the exercise was to illustrate how people have no problem choosing if they see alternatives, as when they can choose between vanilla and chocolate. However, problems arise when only one flavor is available. We don’t see that as a choice. Rather we devalue it as simply being all that’s left. Consequently, we derive no joy from what we do have – after all, who gets excited about making do with the leftovers? Moreover, we can begin to feel pretty resentful and angry toward those enjoying what we don’t have, or who we imagine are enjoying what we don’t have. I can remember nights driving home from work obsessing about the smiling people in the cars around me and resenting the happy homes that I imagined they were returning to.

In the movie The Passion of the Christ there is a powerful moment when Jesus, beaten and abused, embraces His cross with quivering hands as though it is the most precious possession He has in the world – which of course, it was. At that point, there were no options left available to Him. There was no choice: to “go to the cross” or …
All that was left was the cross, and as an example to us, Jesus chose it, embraced it, and created from it the best possible Good News.

I hope that you see where I’m going with this unfortunately autobiographical tale. As caregivers, we can easily become trapped in a sense of hopelessness that leads us to feel angry and resentful of those around us who are living “normal” lives. That anger and resentment, in turn, bears fruit in the form of a bitterness that convinces us that, in reality, we are the real victims of this disease, not the person dying. And this victimhood is the final link in a vicious loop that feeds on itself, solves nothing, and makes everyone involved in the situation more miserable by making us even more angry and more resentful.

The only way to break out of this death spiral – I call it that because it will kill you – is to choose the situations in our lives in which there are no options (in Biblical terms, “our cross”). When in this way we not only take up our cross, but truly embrace it, we discover that a joyously new and miraculous possibility emerges: the possibility of regaining just a tiny bit of that perfect Eden experience where life wasn’t supposed to be governed by choices between good and evil, right and wrong, or even vanilla and chocolate. We begin to realize the possibility of living our life of service immersed in and infused with the love of God. We can discover that in the midst of this broken, fallen world, God can create for us a holy place where truly, it is all good.

In Christ, Amen ☩

❦ ❦ ❦ ❦ ❦ ❦

A prayer for when you’re out of options…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the bounty of Your love. But today, I especially want to bless You for making my gift of standing up for others into a way for me to experience a foretaste of Heaven. Please give me eyes to see my own calling, and the strength to complete what You have set before me. Amen.”

Posted on

Make Peace with Your Past,
Looking to the Future

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…

For those of you who missed the announcements online, there has been a major shift in my life. Easter Sunday afternoon at a Red Lobster in Mesquite, Texas, Jean Barnes (the beautiful lady I mentioned last week) and I became engaged to be married. This relationship is truly amazing.

This weekend she drove to Mineral Wells to see our town (she loves it) and to see what Frannie and I have already so she knows what she doesn’t need to move here from Mesquite. Tip: if you live in the Dallas area, a big garage sale will be announced in the near future!

As I write this (very early Saturday morning) Jean and Frannie are having a “girl’s sleep-over” at the Super 8 hotel down the street. I insisted that she have a hotel room. Despite what many of my peers seem to think, getting old doesn’t miraculously make wrong things right.

Finally, it is becoming increasingly apparent that this relationship is healing for everyone involved – even Frannie. And maybe that is one of the biggest takeaways from Jean’s and my experience of recovery. Just as no one goes through the trauma of loss alone, no one heals alone either.

❦ ❦ ❦ ❦ ❦ ❦

When starting the process of picking up the pieces of a shattered life and all its contingent aspects, we are often advised to learn to make peace with our past. The goal is to lessen the amount of emotional baggage we carry with us into future endeavors. That is, in theory at least, the point of the process. But in a practical sense, it can be difficult understanding what it actually means to “make peace with our past.”

Not surprisingly, forgiveness plays a huge role – in terms of both receiving and granting forgiveness. Unresolved wrong can be an anchor that holds you back from moving on in life. But forgiveness can also be tricky. Just for starters, we all know “wonderful” people who deliberately withhold forgiveness so they can use the past wrong as a weapon against us. And then there’s the question of how do you forgive someone who steadfastly refuses to acknowledge any culpability in the matter – let alone show any contrition?

Note here that contrition is not the same thing as feeling sorry for something. For example, I can feel sorry that I stepped on your toe, and I can feel sorry that someone was killed in an automobile accident. The difference in the two scenarios is a question of responsibility. I am responsible for stepping on your toe, and if I accept that responsibility, being sorry in that case is an expression of true contrition.

In the second situation, I have no responsibility so there is no need for contrition and “I’m sorry” becomes a statement about regret, which in some cases can spur us into action to correct a problem.

In addition, we should look at that last point of people not showing contrition when it is due, from the other way around. How are we to faithfully respond to people who try to make us feel contrite and apologize for doing something nice for them? Sometimes people can use forgiveness as a tool of manipulation in that way too. Maybe there is a maxim to be found there: Don’t ever apologize or let yourself be manipulated into seeking forgiveness for doing something right. Of course if you use words that are unnecessarily hurtful, that is another matter, you can and should apologize for that.

However, even that last point is complicated by the fact that today people often find a simple dispassionate recitation of a fact – like 1+1=2 – offensive and hurtful. Emerson once said,

“To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.”

A point to which I would quickly add:

“…and the ultimate act of subversion against Society’s one-size-fits-all standards.”

Forgiveness is also an active process. In Alcoholics Anonymous, Step 9 in the 12-Step Program is, “Make Amends.” This step means to actively go and diligently search out things that you have done to wrong others.

Forgiveness is a complicated, messy business, which is perhaps why there have been so many books written about it. But we can’t let the complications prevent us from tackling the problem. And also please know that giving and receiving forgiveness are equally important. In many churches, we even pray that every Sunday using the words:

…forgive us our sins as we forgive those who sin against us.

In this prayer asking God for forgiveness, we see that it is inextricably linked to our willingness to forgive our fellows.

Another aspect of making peace with my past can sometimes be a matter of recognizing that there was a lesson to be learned and I need to understand and internalize that lesson.

When I was in the Air Force going through my basic technical training for radio maintenance, I turned 18 – which, at the time, was a big deal because in Mississippi, 18 was the legal drinking age. Consequently, I decided to celebrate my new-found maturity by “tying one on.” We can bypass all the (very) messy details and cut to the chase: things did not go well. I ended up that night sitting in the barracks shower with water pouring down over me while I hugged a big gray GI trash can vomiting up everything I had eaten since I was weaned from mother’s milk.

And then there was the next morning! Even after I sobered up, the “fun” continued because merely looking at food made me violently ill.

Obviously, there were many lessons that I could have learned from that experience – like the dangers of mixing sloe gin (a plum-flavored liqueur) and coke. Or the dangers of listening to a “buddy” who tells you sloe gin and coke is a good drink…

But the important lesson that I needed to learn was that getting drunk was not nearly as much fun as it looked like on television. Consequently, I never again got drunk and, in fact, became one of the guys who helped hapless fellow airmen get home after getting so drunk that in some cases they couldn’t even remember their own name.

More recently, the very act of caregiving has been all about “learning the lesson” – learning some skill like how to change the sheets on a bed while it is occupied, or learning not to take it personally when in the midst of a dementia-induced fog, your spouse yells at you how much she hates you.

And sometimes, learning the lesson turns a bad past into a future direction for life – even if just for a bit.

And lastly, a big part of learning to make peace with your past is to, quite simply, let the past be the past. Too often I tend to disrupt my own recovery by continually dragging past issues into the present – long after the issues have been resolved, lessons learned and forgiveness sought and received.

Why do I do that? Well, there can be a lot of reasons but many of them boil down to the simple fact that sometimes I have trouble letting go of some secret public or private pain because I feel unsure about the future and where my life is heading. In those sorts of situations many of us will cling to negative things in our past as though they were cherished security blankets and not the filthy rags that they sometimes are.

Sometimes I am tormented by thoughts and memories of things that I had done in the past, while other past moments – even grievous mistakes – are viewed with detachment. So, what makes the difference? Well for me, many times the view that I have of a given event depends on the scope of what the event says about me.

Some events simply point to things that I have done wrong, and those tend to be easier to move beyond. But others, the ones that really cause problems, are the ones that I believe reflect on, or even define, who I am. For instance in High School there were (lots of) things that I messed up. But there were a few others that, though small and even laughable, for me delivered the message loud and clear that I was awkward and unlovable. Which, in turn, led to a life that was defined by long periods of inner, silent desperation. I used to say that I would give up working and retire when they, “…pried the mouse out of my cold dead fingers!” Which is sort of the geek version of dying with your boots on.

Of course, thank God, that is all now changing and past emptiness and fear is being replaced by feelings of hope and eagerness for the future. And with that renewed optimism for the future, I am slowly discovering a new purpose for living that goes beyond writing software for the rest of my life.

In Christ, Amen ☩

❦ ❦ ❦ ❦ ❦ ❦

A prayer for when your past is a burden…

“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 being the Light of the World. But today I want to bless You especially for the light that You bring into my life, and the joy that I find even when it took me far too long to stop talking and to listen to You. Thank you for the future and opportunities that lay ahead – both those that I can see, and the ones that are invisible. Amen.”

Posted on

Temper, temper…

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…

My dad used to say that it was a miracle that he didn’t end up either in prison or on death row. He was born in a sod hut on the plains of Nebraska in 1916 or 1917. Soon after his birth, the family moved to Grandin, Missouri. But things didn’t go well for him there. His father ran out on the family (which consisted of my dad, his older sister Hattie, and their mother) when he was just a toddler. When Dad was about five, his mother died of tuberculosis, and he was given to a family to raise but was soon handed over to an old woman named Becky Moore. She was in her later 70s, and was extremely abusive, physically.

He lived with her until he was about 16. He survived by learning to be quick on his feet to dodge chunks of cordwood that she would chuck at him – her favorite way of expressing her “displeasure” with something Dad had done. He also learned the value of “lighting out” ‒ getting out of the house for a few days to live in a lean-to he’d built for himself on an island in the middle of the nearby Little Black River.

Shortly after Dad turned 16, a recruiter for the Army came through town, offering what Army recruiters have offered since time immemorial: good pay, adventure, and a chance to see the world. That all sounded good, so Dad went in to talk to him but discovered that at age 16 he was too young. However, a week or so later, something made Becky Moore even more angry than she usually was, and which put Dad in fear for his life, and he knew he had to light out for good.

He tracked the recruiter down at his office in Poplar Bluff, Missouri and pleaded his case, hoping that the Army could make an exception. Looking back, Dad could see that the recruiter recognized him from their previous meeting in Grandin, because when Dad finished his story, all the recruiter said was:

“So how old are you today?”

To which Dad answered, “Eighteen, sir.”

“Well, in that case, son, it looks like you’re in the Army. Hold up your right hand and repeat after me…”

Though the Army obviously produced challenges and plenty of heat of its own – like two wars – it was very good for my dad. He used to say that in a very real sense, the Army was his mother and father because it taught him to say “sir” and “ma’am,” and how to keep his nose clean. So, he grew up to be a kind and gentle man, a dauntless friend and a fearsome enemy. He never swore because he said that using profanity was a sign of a lack of education.

William Lawrence Porter ‒ Dad

❦ ❦ ❦ ❦ ❦ ❦

I have written about my dad before, but I bring him up again because the comparison between him and his sister Hattie is particularly telling – and significant when talking about caregiving, grieving, and recovery.

You see, after their mother died, Hattie had some hard times too. Being five or six years older than my dad, she was taken in by a well-to-do family there in town and grew up never needing anything. But the outcome was very different. She grew up mean and argumentative, with a demanding nature where everything had to be her way. As a child, I remember Aunt Hattie as being someone who didn’t know how to play – and her language would occasionally leave drunken sailors blushing with envy. Even when she wasn’t angry, she sounded like she was snapping at you, biting off her words. In the end, her temper pretty much defined her. One thing Dad used to say her that was always assured to irritate her was, “Now sister: Temper, temper…”

However, the word “temper” has more than one meaning. In addition to being a noun that names something (typically negative) that someone has, it can also be a verb. Tempering is something that you can do to something, typically a ferrous metal such as iron or steel. (For cooks: Yes, I know you can temper chocolate too, but that’s an analogy for another day.)

The process for the tempering of steel starts by heating it to several hundred degrees and then quenching it quickly in water or oil. Though many people don’t know it, steel has a crystalline structure and the heating causes the atoms in the metal to become more mobile and redistribute themselves in a chaotic manner. The quenching then cools the metal quickly, essentially locking the metal’s new crystalline structure in place. The result is a metal that is very hard and very strong, but which exhibits a significant downside. Metal in this state is also very brittle and when deformed too much will sometimes shatter. Similarly, steel in this condition can be sharpened to a very fine point, but it won’t hold the edge well, as its brittleness means that it will wear rapidly.

Tempering deals with this limitation by reheating the metal (or more typically some part of the metal) and letting it slowly cool. This part of the process allows the crystalline structure to relax a bit, which weakens it slightly but also makes it more ductile and far less susceptible to catastrophic breakdown.

In addition to iron and all manner of steel, people can also be tempered – and as with the metal it sometimes requires a lot of “heat”.

In the case of my father and his sister, they both went through the “heat” of the initial trials and at first became very hard. But after that initial “heat treatment,” the reactions of the two were very different. My dad saw subsequent trials as things to be overcome, and as opportunities to learn. So over time, he became my dad, hard where he needed to be, but also warm and loving.

Aunt Hattie, however, just saw additional trials as things to be avoided at all costs. Her motto was to always take the easiest road possible. Consequently, she remained hard, and her spirit was brittle and susceptible to shattering. Many of the defining events in her life were places where she had to stop and “pick up the pieces.”

As we go through life as caregivers, care receivers, or those grieving a loss, the same two options are available to us. We can let the heat come when and where it may and welcome it as a force to form us into who we were meant to be, or we can reject it and the change it could have wrought and remain hard, and spiritually and emotionally brittle.

Taking the step to embrace the heat can take courage – in fact, a lot of courage. But where does that sort of courage come from?

The truth is, having the courage to believe in the future is only a risk if the future is random and uncertain. Thankfully, such is not the case. Thankfully, there is Someone with a hand on the wheel who sees not only your future, but the future of everyone who ever was, is now, or ever will be.

What’s more, the owner of that hand cares about you deeply, and in ways that you can’t begin to imagine. So the real question is, how do you begin to trust in that Guide? A very long time ago, a young man got so excited about the possibilities that he wrote a song about it:

“O, taste and see that the LORD is good; How blessed is the man who takes refuge in Him!”

Ps 34:8

In a sense, this statement is the exact opposite of “blind faith” that many people think is required. Rather, this speaks to a faith that has proven itself over and over again across untold generations. A faith that is not only unafraid of reality checks, but actively invites them.

Our Creator intends far more for us than mere survival. He earnestly desires for us to thrive, where we are as sharp tools in the hands of a skilled craftsman – and for that we sometimes need to go through the flames to be perfected, refined, and tempered.

One last point I want to make is that last week, I left a cryptic note at the end of the last post, that we would have to see how things went “next week.” Well, those of you who follow me on Facebook already know how things went. I have changed my profile to reflect that I am “In a Relationship” with a beautiful Christian lady by the name of Jean Barnes.

My Beautiful Jean…

She lost her husband to HD 15 years ago, and her daughter to the same disease in February. She was the dear friend I mentioned in a post, when I drove into Dallas to attend her daughter’s visitation. After a few subsequent visits and many long text conversations and phone calls, it became obvious to both of us that we needed each other and God was bringing us together.

So, yes, I have tasted, and indeed He is very good…

In Christ, Amen ☩

❦ ❦ ❦ ❦ ❦ ❦

A prayer for when you are going through the fire…

“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 commitment to me as shown by Your willingness to sacrifice so much for me. But today I want to bless You especially for the miraculous ways in which You have brought together the disparate threads of my life and satisfied my innermost needs by answering prayers I didn’t even know enough to pray. Amen.”

Posted on

Starting Recovery

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…

After being the sole caregiver for someone, recovering from their death includes one key aspect: Learning to shift your mental focus back from you and them, to recognizing a new “us” which includes a different person. Often when you are in the throes of caregiving, your loved one’s needs can be so pronounced and overwhelming that you are totally focused on them – with ideally a few slivers of time set aside for self-care to help you survive.

But when that phase of life ended for me, I found that I needed to shift back to a more appropriate pattern of sharing, to where I think about life in terms of this new “us.” After years or even decades of dedicated caring, that change can be hard and the resulting relationship can feel almost unnatural at first – or at least it is for me.

But I am learning that with a lot of support and love and prayer, I can begin to see the way ahead. Yes friends, you read that right. I really did use the present tense a couple of times there.

❦ ❦ ❦ ❦ ❦ ❦

Things are happening fast in my life. As I write this it is 4 am Thursday morning and I have been awake for about an hour with ideas running through my head that I need to get down on paper. I am reminded of a poster I saw once that described a writer as:

“…a specialized type of alchemist that can transmute caffeine into words.”

Ain’t it the truth.

When Janet died, the post I wrote as a tribute and announcement said that the journey we are on together isn’t over. While my caregiving duties are done (for now at least – but you never really know, do you?) there was still the whole question of, “What does recovery look like?”

There are obviously many parts of that question, and one that I talked about in the recent past was Preparing for Reentry…. Carrying on with that thought, I need to remember that while it is impossible for me to get back to who I was, and how things were “before” – I still need to figure out how to go about assembling a new normal for my life.

In the final analysis, life does move on. Moreover, life was an ongoing string of catastrophes and miracles before “it” happened and there is little reason to assume that life will be any different now. The unfortunate truth is that life doesn’t come with a ration card for bad things, so that once you get your card punched, you can be assured that nothing else bad will ever happen to you. In the end, the truth remains that pain and joy are the two sides of a coin, and both sides of the coin are the same size.

Well this week, I read something that partially answered some questions, and partially gave me a bunch of new questions to ask – learning is like that. The article in question was primarily about the differences in the rates at which women remarry after the loss of a spouse, versus the rates at which men remarry in the same circumstances. While I obviously can’t speak to the veracity of the conclusions that the female author made about the reaction of women, I can say that when talking about men she “hit the nail right on the head.”

The one thing that was obvious from the outset was that widowers remarry at a rate about twice that of widows. While part of this discrepancy can be attributed to the well-documented fact that men die earlier than women do, even that statistic is changing as more and more women are dying early like their male peers. The author, therefore, attributes this significantly different rate to the fact that men and women experience the loss of a spouse in fundamentally different ways. The basic issue, she asserted, was that women experience the loss in a relational way. In other words, they miss the intimacy, the friendship, the sharing – in short, all the various aspects of a marital relationship.

By contrast, while men do miss the relationship – I know I sure do – their primary experience is different. My experience was, in the words of the author, one of an amputation. Boy, did that point resonate with me! For a very long time, even before Janet died, I had felt that way but didn’t know how to verbalize it. I felt as though I woke up one morning and part of me had been cut off and was missing.

Since Janet died, I have desperately needed someone to fill that void. But let me quickly add that the result was not simply an exercise to find a “warm body” to fill a social niche in my home, or empty spot in my bed. Human beings are not anonymous interchangeable parts. However, this point isn’t an introduction into a discussion of the “number of fish in the sea.” Rather, as with all matters in life, the lady and I need to remember that in addition to us, there is another party involved in the process – The One who created us, and Who, by the way, knows our needs much better than we do.

I have had relationships where I found the “right one” on my own and they were unmitigated trainwrecks – though God has been able to do some wonderful stuff with the resulting bits of wreckage. Then there was the relationship which God put together and it lasted 35 years. Although it wasn’t perfect, and I have been writing for a year and a half about the problems we had to face over the last three and a half decades, it was a good relationship that has prepared me magnificently for whatever God decides comes next.

Still, I don’t need to depend on a secular psychological paper to understand these feelings. Consider the creation story given in Genesis. God creates everything from light to insects, and after each act of creation, pronounces His latest work “Good.” But surprisingly, in the midst of all that goodness, there is one thing that He says is not good:

“It is not good for man to be alone…”

Gen 2:18

In response, God created a woman so that he would no longer be alone. Though there are obvious exceptions, from that day to this, men tend to look for a woman to fill in the gaps in their lives, and to be their partner and companion.

But to me, the really interesting thing is that even if you don’t accept the idea that Genesis is a true accounting of creation and consider it to be just another example of the ancients cobbling together a myth to explain the world around them, the point still works because you have to explain why that line is in the story. You have to ask yourself, “What was it that the ancients were seeing that they felt compelled to explain?”

The point is that regardless of whether God was explaining what He was doing, or the ancients were trying to explain a world they didn’t understand, men have been experiencing the sensation of incompleteness and longing that I am now experiencing, for untold millennia – an idea that I find strangely comforting. But is it really so strange?

When you are starting the recovery process, it is comforting to look at the mess you are in and see that what you are going through is survivable. I can’t tell you how many notes and comments I have gotten in the past year or so that basically said, “What you are going through is terrible, but seeing you make your way through the mess gives me hope that I can make it through too.”

One of the interesting side effects of the writing I do is that it gets me into the habit of being more open than some would say is “smart.” But perhaps, honesty is better than being smart – or at least smart in the sense that the naysayers mean. From here our conversation could go many different directions, so perhaps it is better to just let it lie, and see where things go next week.

In Christ, Amen ☩

❦ ❦ ❦ ❦ ❦ ❦

A prayer for guys who are feeling incomplete…

“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 perfection of Your design and plan. But today I want to bless You especially for the perfection that You are bringing to my imperfect life. Thank You for the miraculous completion that You bring to the broken, empty parts of me. Amen.”

Posted on

Flashbacks

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…

The settling in process continues. For example, as I was writing this post the mail arrived with an envelope containing two copies of Janet’s death certificates. I guess it’s really official now.

So it’s official…

I had a chance to go on a little local radio station this week to talk about caregiving and grief. The host and I talked for about half an hour, and he was wanting to go longer, but our time slot was up. So before we stopped, he asked me on the air if I would be willing to come back and continue the conversation. I agreed, so I will be doing it again, same 8:30 am time slot, on the 9th of April. Also I will be getting an audio recording of the radio conversation that I will be publishing as soon as I can.

Frannie also had a visitor this week ‒ her boyfriend from Houston flew up to visit. He is flying back down to Houston Sunday afternoon.

I had a doctor’s appointment Thursday to get hooked up with a new PCP (Primary Care Physician) after our move up here. My blood pressure is high (which I knew about) but he restarted me on meds for that. He also did an EKG and some blood work. My heart is good and my blood sugar is fine – to tell the truth, I had been a bit concerned about that.

The really interesting thing, though, is that when I mentioned that Janet had died of Huntington’s Disease, my new doctor told me he had been involved in treating members of three separate families in Mineral Wells (pop. 16,788) that had members with Huntington’s! You just never know…

❦ ❦ ❦ ❦ ❦ ❦

About a year ago when I first wrote about the connection between PTSD (Post Traumatic Stress Disorder) and caregiving, it was sort of a new idea, but now the connection is well established. This week I had another encounter with one of the hallmarks of PTSD: the flashback.

Flashbacks are when something occurs that puts the person back into a past situation emotionally. For example, in the past I have been triggered by fire alarms that sounded too much like a klaxon, and was put back into the mental state of trying to find my alert EC135 to run to, when there are, of course, remarkably few planes of any sort in downtown Waltham, Massachusetts. This week I got triggered again, but this time by a dream about being a caregiver.

In some ways, the exact circumstance of the dream is a little sketchy, but I remember that Janet was upset about something (I don’t remember what) and was yelling about it. And as had happened so often in real life, the more I tried to explain things, the angrier she got. I eventually awoke with a start, and I remember being stuck for a time in the same old conundrum of how to explain whatever the problem was in such a way that she would understand and calm down. After a few minutes of my mind and heart racing, trying to come up with a solution, I calmed down myself and realized that there was nothing to figure out and no crisis in need of a solution. But boy, it sure felt like there was a crisis…

But that is one of a flashback’s defining symptoms: your mind and body respond to the situation as though it were happening again. My mind was racing; my heart rate was up and I could hear my pulse pounding in my ears; my breaths were shallow and rapid; and I was sweating like mad.

Again I was reminded of what it felt like to be in a seemingly hopeless situation. Of course the situation wasn’t really hopeless – and not just because the situation was at its root a dream and so of questionable reality. But even when the situation that the dream was flashing back to was occurring in real life, it wasn’t hopeless. That was a lesson that I had to learn back then and is apparently one I needed a “refresher course” on, or perhaps a bit of continuing ed.

Which brought up for me an interesting thought: Perhaps learning from flashbacks is possible. I know that’s a curious, counter-intuitive thought, but stick with me here.

Flashbacks are by definition reliving a past experience that was stressful and even dangerous, but doing so in an environment that is often totally safe. For example, in this most recent case, I didn’t really have to worry about anything bad happening to me. After all, I was lying safe and alone in my bed. No monsters hiding in the closets, and no boogeymen (boogeypersons?) hiding under the bed. So if you think about it, what better way is there to work through fear and trauma than to replay it in a totally safe environment? This realization can be huge – especially if (like me) you are one of those people who always thinks of the thing that they should have said on the way home. Similarly, it is so easy to imagine later what I should have done when this or that happened to me.

Unfortunately, I find that too often I don’t want to actually resolve a situation, not really. Often my sights are set much shorter like merely avoiding the consequences, or figuring out how to hide the problem so I don’t have to think about it. Eventually however, the heartache, whatever it is, will come out – often at a time when I am least capable of dealing with it. For example, there are the WWII vets who have suppressed trauma related to their service for 70 years or more. Now they are suffering from Alzheimer’s or other conditions, and memories that they thought were stuffed down so far that they would never again see the light of day, are popping back up to the surface, multiplying the trauma they are experiencing.

So given these consequences, why would we not choose to really deal with a situation and have it be done with? After I toyed with that question long enough, I finally understood that the logical answer I was looking for didn’t exist. Logically, there is no reason to put off handling problems. One of the first lessons I learned as a little kid was to stand up and deal with the past and face the future – but why is doing that so hard?

As I have thought about it this week I have become convinced that it is not just about human cussedness – though that undoubtedly plays a large part. Sometimes we are told that “stuffing it” is the proper solution. We are told that big boys (or girls) don’t cry and no one wants to hear our troubles anyway. Sometimes it’s the feeling that is so prevalent in culture today, that if it hurts, it’s bad.

For caregivers, the problem can be procrastination born of emotional, spiritual or physical overload. I know that I always found it way too easy to say, “I’ll think about that tomorrow…” Then at some point, there is so much stuff put on hold that either “tomorrow” can’t hold any more or suddenly (as was my case) you aren’t a caregiver anymore, and the pile of things that you have been putting off comes crashing down on you like a high-country avalanche. The result is that now I am not only grieving, but also trying to deal with all the stuff that I kept putting off.

Still, looking to the future, my continuing prayer is that as I experience flashbacks, that God gives me the grace to learn from them what there is to learn, and not simply recoil in fear so the lesson has to be repeated again in the future. And as far as the flashback I had this week, well I’m still working on that one. So though, here at least, I will never be perfect, I can keep moving forward.

In Christ, Amen ☩

❦ ❦ ❦ ❦ ❦ ❦

A prayer for when your past is coming back to haunt you…

“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 perfection with which You work together the intricacies of creation. But today I want to bless You especially for the wondrous and, at times, mysterious ways in which You weave together my life. I have seen Your glory shining is my mornings and Your majesty filling my nights. Amen.”

Posted on

Preparing for Reentry…

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…

Not much news this week on the home front – our futon arrived three days early and Frannie and I got it set up in three or four hours. Now if we have any visitors (?) they will at least have a place to sit. To tell the truth, I would have rather bought something used, but none of the Goodwill stores in the area accept furniture.

In other news, Frannie dropped the bomb on me in passing, that her boyfriend Leroy is coming up for a visit – no word on whether he is packing a ring…

❦ ❦ ❦ ❦ ❦ ❦

The term “reentry” of course comes from the American space program and refers to the process of coming home from space and reentering the earth’s atmosphere. As it turns out, actually being in space is not that difficult. Likewise, getting to space is not inherently very hard. Put enough thrust under anything and it ends up in space – even a red Tesla sports car. No, the really tricky bit is getting home in one piece – you’ll note that Elon isn’t trying to get his car back.

As a kid growing up in Missouri, I remember watching Walter Cronkite using a plastic model of the capsule to explain for the 900th time about a feared malfunction with the heat shield of John Glenn’s Friendship 7 Mercury space capsule, and how they hoped to minimize the risk of it falling off by not jettisoning the retrorocket pack. Their hope was that its retaining straps might help hold the shield in place.

I also remember interviews with Glenn afterwards in which he related the consternation he felt during reentry as he watched flaming chunks of metal hurtling past the windows of his capsule and wondered, “Was that the retropack burning up, or was it my heat shield breaking off?” As we discovered later with the Space Shuttle Columbia disaster, the heat of reentry is so intense that if it had been his heat shield he wouldn’t have had time to even finish that thought.

Recently, I have been thinking a lot about reentry as well. Not reentering the atmosphere from the vacuum of space, but reentering public life from the vacuum of caregiving. Though to be honest, I haven’t actually gotten as far as “reentry.” Right now I’m all about the “Preparing for…” phase of the process, and the first thing I noticed was that, with the exception of the airplane-like Space Shuttle, everyone who has ever gone into space has come home sitting backwards.

Which, if you think about it, is an interesting metaphor for life in general, and life post-caregiving in particular. As humans we seem to prefer to back into the future. For me, that posture is often more comforting because it means that I can be reassured by the sight of all the things that I’ve survived – which can be preferable to having to consider all the challenges and hills that there are still ahead of me. The unfortunate side effect, though, is that it makes it kind of hard to see where I am going. So, yeah, I guess that is one thing that I need to be working on.

In conjunction with that exploration, I have noticed something interesting about myself. I often say that if I ever created for myself a personal motto, it would probably be something along the lines of:

Just get started,

inspiration will come…

However, probably from the effect of living with Janet for 35 years I have become much more of a planner – though, from time to time, I still tend to start moving before I have a clear idea of where I’m off to. And while going through life “facing front” allows me to see opportunities and to be prepared for them as much as possible, it also allows me to see innumerable challenges fraught with all manner of potential problems.

For example, being out in the world means having to deal with people you don’t know and perhaps could be even someday, eventually, possibly, maybe, (gasp) dating. I have been out of the loop for so long that I don’t remember all the rules, and the ones I do remember are probably offensive to somebody now. All I know is that the last time I had to figure out “the rules” was Junior High – and that was a pain that I am not looking forward to repeating.

My best friend: “Hey Mike, I talked to Rebecca 4th period and she says she likes you.”

Me: “Hey, that’s great!”

Best friend: “Yes but, she also said that she doesn’t like you, like you…”

Me: “AAARRRGGGHHH!”

And add to that looming dread, the fact that while I can (with enough editing) come up with some pretty good written words, I am fundamentally not super comfortable speaking with people live or in online chats. So I am often left wondering, if we can send people to the moon, why can’t we figure out a way to edit the words coming out of our mouths? Like the time I called Janet by one of my ex-wives names in the middle of an argument. My, but that escalated fast…

But beyond any potential re-living of the bad old days of my youth, this last point brings up another topic. The world has changed a lot in the past couple years. Coming out of the bunker where I was caring for Janet I am finding a world that I at times don’t really like, or even recognize. So I begin asking myself questions like:

  1. How do I fit in?
  2. Can I fit in?
  3. Should I fit in?

With the third question being in many ways the most important. To begin with, the level of fear in society is unbelievable – and to me personally, intolerable.

Or again, people used to say, “You only have one chance to make a first impression.” Today, unfortunately, you seem to only have one chance – period. If in your entire life you have ever said anything that is troublesome to anyone, you are just done. There is no acceptance of misunderstandings and no tolerance for differing opinions, and even if you apologize for something that you acknowledge you were wrong about, there is certainly no forgiveness. Sometimes it all gets me thinking that perhaps sitting on my front porch and yelling at people who walk on my lawn wouldn’t be such a bad life. But do I really want to end up like Clint Eastwood’s character in Gran Torino?

This point ties in with another challenge I have been considering. As I grow older, I have noticed a tendency to become more introverted – a not uncommon situation. Recently, I was listening to a radio program that was discussing retirement, and they mentioned that introversion was a real problem in that context as well. The counselor leading the discussion said that too many people decide to simply withdraw from everything, and sit on their front porch in a rocking chair and watch the world go by. But as I have written before, that can kill you.

So with all these challenges in front of me, what am I to do? Well, I could turn back around, try to convince myself that the things I saw when facing the other direction weren’t real, and resume sliding into the future backwards. But for me it boils down to a rather old-fashioned word that people today like to ignore or redefine – Integrity. And as far as I can see there is only one thing that I can do with integrity, and that is to continue becoming who God made me to be. Who I am as a created being is what ultimately gives my existence meaning. As an engineer, I like to tell people that raw data is meaningless. The thing that gives it meaning – and therefore value – is its context. The proper context for my life is The One who created it.

Admittedly, figuring out who that person is can be a big challenge, but then only the big challenges are really worth tackling. It is only by learning who I essentially am that I can learn to let go of the temporary and accept what comes next. For example, the relationship that Janet and I had was the best that I could ever conceive. But that, in a way, is part of the problem: It’s the best that a human mind could conceive – I think I’d kind of like to find out the best that the mind which created the cosmos in all its amazing complexity and diversity could conceive. Now that could be interesting!

So the preparations continue…

In Christ, Amen ☩

❦ ❦ ❦ ❦ ❦ ❦

A prayer for when you are going through life sitting backwards…

“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 future that You have prepared for those who love You. But today I want to bless You especially for our ‘swivel seats.’ So often I feel afraid of the future, but You are eternally forgiving and patient. At any moment I can turn around in my seat and face ahead towards the future, fearlessly. Thank you. Amen.”

Posted on

Living your purpose, on purpose

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…

We are finally getting settled in.

We have a clothes washer and dryer, and a refrigerator, though not without the odd trial. For example, our washer and dryer were supposed to be delivered between 6 and 8 pm. The folks from Lowes finally showed up about 9:30 pm. Then when they plugged it in, the dryer didn’t work – the lights wouldn’t even turn on. The “installers” told me that the outlet was probably dead, so the next day I had an electrician come out to check the 240v outlet. When he found out that it was “hot,” he checked the electrical connections in the back of the dryer pro bono. This is what he found.

Well done, Lowes, well done! Actually, I’m just glad nobody got electrocuted. The connection that is hanging free is one of the two powered leads and the cover that went over this terminal strip is a piece of galvanized steel.

All I need now is a bed to sleep on. Maybe next week…

An exciting piece of news is that I am going to be on the radio March 19th to talk about caregiving. The way it came about is that I always listen to a local radio station (KATX) on my way in to work. Every day they have a couple of interview segments where they talk to someone in the community about some matter of importance. So the idea occurred to me that maybe there are people in the area who are dealing with neurological conditions, who might benefit from my experience, so I called the station to talk with someone about my idea.

Now to give you an idea of how small this station is, they don’t have a receptionist to field calls. Instead, whoever is on the air right then answers the phone. Consequently, when I called, the fellow who picked up the phone was the very guy that I needed to talk to. We talked during a record and a pre-recorded news program, and he agreed that it was a great idea. So he is going to interview me on the air.

❦ ❦ ❦ ❦ ❦ ❦

One of my favorite books (Hitchhiker’s Guide to the Galaxy) posits in its opening pages that our lives are, for the most part, spent trying to answer the Big Three Questions:

  1. Where do we come from when we’re born?
  2. Where do we go when we die?
  3. Why do we spend so much time in between wearing digital watches?

Beneath the obvious comedic intent of the last question, there is a rather profound idea in play that, put more simply, questions the point of our lives:

“Why am I here? Does my existence have any meaning?”

For the “lucky” few who manage to make it through life with no major upsets, the question of meaning may be successfully avoided for years, perhaps an entire lifetime, though an interesting discussion might be had as to whether such a life constitutes a great blessing or a rather curious curse.

In any case, however, for caregivers and patients there is no need for such analysis as the thoughts questioning the meaning of our existence are disturbingly common. I imagine Janet lying in her bed and wondering about the meaning of her life. She worked so hard for so many educational and political causes that are falling apart in 2021. Thankfully, she didn’t live long enough to see men pretending to be women eviscerating women’s sports.

The way I tried to address the issue was to collect and surround her with letters and mementos that spoke to her accomplishments – which she really appreciated. She had me read one letter and the acknowledgements it contained to her over and over again.

And for my part, I often had feelings that mirrored hers. For instance, it wasn’t one of my prouder moments, but occasionally the question would come up, “Did I really work hard for all of those years building a professional career just to end up changing my wife’s diapers?” There were many times when I would feel underappreciated and underutilized. And then, one day there were no more diapers to be changed, so what now? What is the purpose that I am to live for now?

One problem people can have with finding their purpose post-loss during grieving is that many didn’t know (or recognize) what their purpose was to begin with! Last Sunday in church, the minister talked a lot about our purpose in life and that each of us does have a divinely-designated purpose which sometimes remains constant throughout life and sometimes changes as the circumstances around us change.

In years past, it was common for people to think in terms of having a “calling” to certain professions like being a member of the clergy, a lawyer, doctor, or teacher. Unhappily for society, with many people today, such labels may tell us about what a person does, but very little about who they are. A concept that we seem to have lost is that someone’s character (who they are), should inform our judgments about whether we should believe or trust what they say and do. Too often the question simply boils down to, “Do they agree with me?”

But all this got me thinking, if I really do have such a purpose, it follows then that everything that happens to me is either preparing me for the work ahead, or is an opportunity for me to practice my calling now. With even a cursory consideration of nature it is plain to see that nothing is lost or wasted. It is reasonable, therefore, to assume that the same should be true of the experiences I have. They are all good for something – even if it is only to teach me: “Don’t do that again!” (See for example, Rom 8:28)

So how am I to go about identifying or renewing a sense of purpose in the midst of all the emotional clutter that at times obscures my sight and clouds my vision with grief?

The first part of the answer is to stay awake and aware of what is going on around me. One of the ways that I learn what to do is to notice what needs to be done, and then to take that as a personal mandate to get involved. For example, I know a woman who makes little felt dogs to raise awareness and to raise money for research towards the cure of a degenerative disease. Or, there are people I know who take on praying for people who are in need of support. Or maybe even volunteering to talk on the radio about caring for a loved one with a degenerative neurological condition works. No act is too small if it fills a real need.

The next thing I can say is, don’t forget to consider what you find fulfillment in doing. When working in your calling or purpose, the experience is unmistakable. The professor and mythologist Joseph Campbell expressed this point simply as, “Follow your bliss.” But you need to understand his usage of language. “Bliss” is not just being happy, very happy, or even mind-bogglingly, extreme, over-the-top happy. Bliss is the experience of knowing that you are in the right place, doing the right thing at exactly the right time. Sometimes people talk about being “in the zone” where they lose track of time and everything outside of that one task – that can be one expression of it.

Finally, there is the goal to practice your purpose or calling (as I mention in the title) on purpose and with intentionality. For me, this point means God shouldn’t have to hit me upside the head every single time to get me to understand. At some point the goal should be to pursue what is right consciously and deliberately, without the need for a spiritual carrot or stick.

In Christ, Amen ☩

❦ ❦ ❦ ❦ ❦ ❦

A prayer for when you are feeling purposeless…

“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 plans and concerns for the cosmos and all its inhabitants. But today I want to bless You especially for the plans which You formulated for me and for my blessing. Too often I need to be compelled and driven to do what is right – and even what is right for me. Teach me how to trust You and follow in Your ways. Teach me how to go about living your purpose. I ask all these things, trusting in Your long-suffering loving-kindness. Amen.”

Posted on

His ‘n’ Hers

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…

As we continue getting settled in, the place is really beginning to come together. This afternoon (Sunday) we will be getting our washer and dryer delivered. They are both made by LG and while I have never owned one of their appliances before, I did have a couple LG phones that I really liked, so I’m hopeful.

I mentioned last week that a dear friend’s daughter died of HD. Well this week there were visitation hours over in the Dallas area so I attended. I am so glad I did!

In business there is the term, “flying the flag” that refers to attending a meeting with little or no expectation of really doing anything useful, but you go because you feel you need to. As I was driving to the visitation I was feeling on some level that this was a bit of a “flying the flag” kind of trip. I was going because she was a dear friend and I wanted to be there to help support her but I had no idea what that would look like. Plus, to be honest, there was a certain amount of apprehension as well. After all, we had never actually met so I guess on some level you never really know, do you?

But what I found was very different from those worrisome thoughts. Jean is as wonderful a lady in person as she is online, and her family is great too. Turns out that her daughter taught at a local Christian school and a lot of former students were stopping by to pay their respects – which says a lot about who she was during her life here on earth. But more importantly, attending the visitation really did accomplish some things that were very positive.

In case you didn’t know, Janet donated her body to the local medical school to help train future doctors in anatomy. Consequently, when Janet died, her “final arrangements” consisted of calling a pager number and telling the school where they could pick up the body. There was, therefore, no visitation, no memorial service, and no funeral – just a phone call and a pickup by a local mortuary. In six months to a year when the school is done with Janet’s body they will cremate what is left and send the ashes to us via UPS.

Now don’t get me wrong, her body donation made the time immediately following her death much more bearable. Moreover, I am so glad that she made that choice because it was a perfect expression of her life and attitude. But there were also negatives to that decision. For instance, seeing her body in a casket would have provided a certain kind of closure, which Frannie and I missed.

But in the end, while I benefited from this visitation greatly, this visit wasn’t about me. The primary goal was still to support Jean and her family. I have never met IRL (In Real Life) someone that I had first met online. Hence, one thing I became aware of was that, for me at least, the initial meeting felt a tad awkward. We had talked so many times, about all manner of things, so in one way it seemed like we were old friends, but in another way we were just meeting. Still, we had time to share blessings and challenges, and I felt very blessed by the time together – and hope Jean did too.

On a completely different track, this week I realized a couple of other nice things about living in a small town like Mineral Wells. First, at night it gets really dark so you can see so many stars, it is incredible! Second, it is quiet. When we were living in Pearland, the TV volume was typically set around 30 to 40 on a 100-point scale. Here in Mineral Wells, with the same TV displaying the same programming, I have the volume set between 10 and 12.

❦ ❦ ❦ ❦ ❦ ❦

Many years ago, a common gift idea for newlyweds was “His ‘n’ Hers” gifts. At one time, nearly anything that both members of the couple could use came in special monogrammed versions. However, linens were often the most common of such gift idea – and the most practical. When Janet and I were married, Janet’s best friend (and Frannie’s future godmother and namesake) gave us a set of monogrammed towels and washcloths from LL Bean. Amazingly, some of the towels survive to this day.

That towel serves as a reminder to me that as a married couple there are certain things that we should share. However, one thing that we should not share is symptoms – and sometimes when caring for someone 24/7 it is hard to avoid that sort of “togetherness.”

The first time I ran into this effect was with my first wife’s mother. All mother-in-law jokes aside, she was one of the most emotionally hardened, manipulative, bigoted people I ever had the displeasure to meet. She would come home at night laughing about how she had twisted a person’s words and manipulated situations to accomplish what she wanted – oh, and did I mention that she worked in Child Protective Services? Sweet, right?

From day one, she angered me and I was offended by her warped sense of ethics that allowed her to do things like tell her daughter that if her future son-in-law had a black best man she was going to walk out on the ceremony. It’s a long story, but I didn’t find out about it until years later. When I did, I blew my stack, and had to deal with her retribution for years. Which is another long story.

The point is that the more I thought about what she had done, the more emotionally hardened I became. When I realized what was happening, I was confused. How could I become like the person I disliked so much? But then I was going through some counseling, and the therapist explained it to me. She said that at the subconscious level our mind doesn’t understand right and wrong, so if it sees me focusing on something a lot – like what a jerk my ex’s mother was – it would figure, “Oh, that’s what Mike wants to emulate,” and start moving me emotionally in that direction.

But this principle also appears in other places – like in the Scriptures where Paul gives us the prescription for preventing the problem: “Focus your mind on things above, not on things on the earth.” Col 3:2.

In other words, concentrate on the good stuff, and the best of the good stuff is our Creator.

While this is an important lesson for everyone, I think that it is particularly critical for caregivers. On the support forums you are inundated with people asking for help with a loved one who is becoming increasingly argumentative, judgmental, and accusatory. Sometimes you see that the original poster has started mirroring their loved one’s emotional state – which the loved one sees and can, in turn, react to by amplifying their behavior.

So ‘round and ‘round she goes,

and where she stops, nobody knows.

Compounding this tragedy is that the emotional responses that started the cycle in the first place weren’t even real, but the symptom of a disease. So they end up with His ‘n’ Hers symptoms. What is needed is a way to break the cycle of ever-worsening actions and reactions – and Paul’s prescription is an excellent tonic. But it will require letting go of some stuff before you can experience its salutary effect.

For example, there’s the attitude that says, “Well they started it! They have to say, ‘I’m sorry’ first.” Of course there are two immediate problems with that perspective.

First, you probably aren’t five years old any more. Do I really need to go into more detail here?

Second, the person who you are wanting the apology from is ill. Often things like repentance, logic, and even “common sense” are all things that they simply don’t possess any more. Sometimes expecting them to behave in a different way is akin to asking a paraplegic to run a 100-yard dash.

The other factor that plays in here is forgiveness. Very often as a caregiver you truly have been wronged by the person that you are caring for, and that injury must be dealt with. Thankfully we live in a world where our Creator has also made true forgiveness available, and it is only that forgiveness that has the power to wipe the slate clean and give us a fresh start – both with Him, and with our fellows.

In Christ, Amen ☩

❦ ❦ ❦ ❦ ❦ ❦

A prayer for when you are feeling short of patience…

“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 compassion and forgiveness. I know firsthand how healing the words, ‘I forgive you,’ can be. So today I want to bless You especially for the gift of being able to forgive others. Thank You for making available the blessing of forgiveness to all. Amen.”