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.

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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 ☩

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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.”

Having pain – or is it a paean – in my heart

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 continuing to get settled in, and for those of you worried about us Texans, we didn’t lose power or any utilities during Winter Storm Uri – which is a blessing. The main negative about the bad weather has been that we are needing a lot of stuff for the house and nothing is getting delivered. Still, on the whole, that is a minor inconvenience.

A somewhat bigger inconvenience is that when we arrived, we discovered that there was no refrigerator in the place. Hence while it was cold, the garage was our refrigerator and the picnic table on our deck became the freezer. However, the cold is apparently over because it got up into the 60s Saturday, and even the overnight low was still above freezing. To handle that situation, I’m going to try to find a small “dorm room” size fridge to tide us over until our new refrigerator is delivered in a week or so.

As we unpack, we keep finding stuff we didn’t intend to move here – like the Crocs that Janet wore because they helped her balance. I think that the rubber gripped the carpeting in the old apartment better and so she felt more stable. We also found a couple of Provale cups that I bought to help with Janet’s swallowing problems. Each time the cup is tipped, it dispenses exactly 10cc (or about 2 teaspoons) of liquid. I thought that I had a home for both of them but – more about that in a moment. In the meantime, if you could use one of these cups, send me your address via private message and one will be on its way to you.

Even though it was a pain moving in the midst of everything, it has really been worth it. Getting settled in here, I am realizing how many memories the old apartment held. Moving has created a new space for Frannie and I that we can fill with new hopes and new dreams. It must be terrible trying to “move on” when you are surrounded by a place that reminds you of… before.

One last look, then always forward…

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One of the fundamental problems in human conversation (especially with caregivers and others going through grief) is that when someone asks how you are doing, they expect a simple answer. They want to hear me say, “Oh I’m fine.” Or, “This week has been really hard, I still miss her.” Or, “I am so tired all the time. I don’t even want to get out of bed.”

Regardless of what the one answer might be, they want THE answer and that expectation can result in the person answering the question to begin feeling as though there is something wrong with them. However, the truth is that having a loved one die, or begin going through the process of dying, is a very stressful time that calls out a whole smorgasbord of (often conflicting) emotions, and which belies the ability to give simple answers.

This week, I came to a better realization of the exact nature of the feelings in my heart, and I found it contains a curious mixture of tragedy and triumph. On the one hand, I was listening to one of my favorite Moody Blues albums and there was a line in a poem that ran thus:

“Night time, to some a brief interlude

To others the fear of solitude”

The poem is so poignant that it brought me to tears. Right now, I am definitely in the “To others” category, and did I mention that I was listening to it at work on headphones…

In a related issue, early in the week when I found the cups I mentioned earlier, I had contacted a dear friend of mine who had a child with HD, and offered her the cups. She accepted the offer happily, but then Friday just as I was leaving work, I got a message from my friend that her daughter had died. This loss brought up fear for me about my two children who are at risk, and a heaping load of fresh “fear of solitude.”

The storm also got in on the act, bringing on its own feelings of inadequacy. Driving home from work one night, I cried because I realized that I needed Janet back, because Janet would know what to do. Coming from New England, knowing how to deal with winter storm warnings was coded into her DNA. As hard as I tried, all I could think of was to buy bottled water and stock up on batteries for our flashlights. But I was able to find a gas station that had gas and the local Walmart announced that they would stay open until they ran out of stuff to sell, they lost power, or 11pm – whichever happened first. So I managed to get food and other things that we needed.

However, that is not the only side. Remember, I said this is a mixture. In compound with these feelings is a sense of joy that directly contradicts the negativity.

Frannie and I are in a new home, making a fresh start together. We are drawing closer together and I see every day, ways in which Frannie is becoming more self-reliant and confident. It is as though not having Janet in the home has freed Frannie to grow, expand, and flourish. This development, in turn, gives me joy because one of the things that had always worried Janet and me was that Frannie would get drawn into taking care of us and not have a life of her own. But the distance from Houston seems to be drawing her closer to her boyfriend and his family – especially his mother and aunt.

In other news, Saturday it was so warm, we took the dogs out to play in our fenced backyard. This is a whole new sensation for them, to be outside without being on a leash. We have dogs on all three sides of us in the back. They are all larger dogs and Lawtay was running around in circles making friends with all of them.

Then also at work, things are going exceptionally well. It is good to feel useful again, and to work for a company that doesn’t start with the presumption that its employees are lazy jerks who will get away with whatever they can. In addition, I am making great headway in defining the software systems that the company needs and we are ready to start building those new systems. And I think it goes without saying how good it feels to have a steady paycheck coming in.

But how about my friend whose loved one died from HD, that is all bad news, right? Nope. There is good news (in fact, The Good News) there as well. Just as with Janet, death is not the sad end of her loved one’s story either but is instead a release from the grip of a terrible disease.

Yes, in the midst of all the upset and the negatives there is much to be thankful for as well. But where does that leave me? Is life a song or paean of joy and triumphant celebration or it is rife with pain, disappointment and sadness? The answer is obviously, Yes! It is both, pain and paean, so regardless of how bleak things might appear at any one moment, there are always reasons for hope.

In Christ, Amen ☩

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A prayer for when you can only see the darkness…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the light that you bring into the world – first at the moment of creation and second through Your coming to live in the world with us. But today I want to bless You especially for all the ways that You bring light into my life. So many times I feel like a puppet being pushed and pulled around by forces that I can’t comprehend or control. But despite those emotions, I can know that You have control of my strings and are directing and guiding my feet. Amen.”

Rubicons, as Far as the Eye Can See

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 Sunday, I shared that Frannie and I were getting packed up for a move up to Mineral Wells, Texas. This Sunday, we feel really blessed because the move went without a hitch – aside from the one I had to get mounted on our car. The movers arrived right on time and packed us up carefully and efficiently. They finished up around 3PM, so after Frannie and I packed a few things that we didn’t want to send with the movers (important papers, contents of the refrigerator, etc.), we got on the road ourselves about 6PM, towing a little 4×8 U-Haul trailer.

The drive was about six hours, so we arrived in our new home slightly after midnight. We were tired, but otherwise safe and sound. The next morning, we unloaded the trailer and while I went to return it, the movers arrived and started off-loading the truck. At one point I was concerned that we would run out of space in our new house before we ran out of boxes in the truck! But in the end everything worked out well and even the finances offered a nice surprise, as the cost of the move ended up being considerably under the company’s original estimate. In addition, U-Haul didn’t charge me extra, even though I kept the trailer an extra day.

In addition to unpacking, to be fully at home we need to come up with three appliances (washer, dryer, and refrigerator) and a couple pieces of living room furniture to replace items that we had to get rid of about a year ago to make room for Janet’s hospital bed.

In any case, the utilities are now in my name, and the cable is hooked up – though all we have is internet. I got a Roku unit about a year ago and really like it. If all I want to do is sit and watch documentaries about Blue Whales, they have a channel where I can do that. If I want to listen to music, I can do that too. It’s a neat service that doesn’t require me to buy cable TV with a bunch of channels that I don’t want – or find offensive.

Something else I have noticed since leaving our old apartment, is that rather than growing dimmer, my memories of Janet are, for now at least, growing stronger and more vivid. I well remember the rough texture of the gray wool coat that she wore the first time we met. The sound of certainty in her voice the morning after we first had “unprotected” sex: “That did it! I’m pregnant!” And she was! Her courage, sitting in front of a room full of 2nd year medical students and letting them watch her undergo a neurological examination. So many good memories!

So we are getting settled. And yes, God is definitely taking care of us…

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The title is a reference to the phrase “Crossing the Rubicon,” as it is used to describe a decision that implies a point of no return. The phrase itself was derived from the historical event where the Thirteenth Roman Legion under the command of Julius Caesar, in direct defiance of orders, crossed the Rubicon River which formed a portion of the northern border of Italy. As a result of this action, Julius Caesar became, well, Julius Caesar.

The interesting thing for me was that this crossing took place on January 10th, 49 BC, or to put it another way, exactly 2070 years to the day before Janet made her own “river crossing” (of the River Jordan). As I looked into this bit of historical synchronicity, I found some interesting sidelights that apply directly to being either a caregiver or someone who is being cared for.

To begin, you would think that the Rubicon would be one of Europe’s mightiest rivers – after all, an event this important should take place on a powerful, majestic river. But not so. Except for a short portion right at its mouth where it empties into the Adriatic Sea, the Rubicon is little more than a creek that Julius’ men could have crossed without getting much more than their caligae wet.

And so it is in our lives. We tend to think that big, momentous turning points should have big, momentous signs and markers. But the opposite is more often true. I know that in my own life, most of the major turning points are only clearly discernible in the rear view mirror – like a random thought drifting through my head that perhaps running an ad in a singles paper (sort of like Tinder, but hardcopy) might be a way to meet a nice lady to date. Or a snap decision in high school to take a creative writing class because it was supposed to be an “easy A” only to have it ignite a love of writing that has lasted 50+ years. Or sending in a postcard from an engineering magazine, to learn about a new programming language that would become my profession.

The lesson is that you never know how a small, even insignificant, change is going to impact your life. I certainly had no notion at the time of anything big afoot. And if you think about it, that means that we can (and often are) passing dozens of life’s turning points everyday without even realizing it. Which is sort of what I meant in the title. Every step we take is in essence wading through another personal Rubicon – and as with the real one that Julius tramped through, there is no getting halfway across and turning around.

The significance of water…

Passing through and over water is a very powerful image that has been used since time immemorial to symbolize rebirth and new beginnings. Which is really the point of baptism, whether Christian or the ancient Jewish rite that came before it. But wait, there’s more.

There were other images about water: Moses and the children of Israel passing through the Red Sea, Jonah passing through the sea in the belly of a “great fish”, Noah riding out a flood in a massive boat that he built. And these are just a few of the references in the Judeo-Christian tradition.

When you add to those examples, the use of similar rites by everyone from the ancient Sumarians to indigenous tribal groups in North and South America, and you begin to get the feeling that there is something “hardwired” in us as human beings that needs these sorts of observances.

The other thing to notice about crossing the Rubicon is that it wasn’t actually very hard to do. Perhaps that’s another important lesson. In addition to expecting big landmarks, and big portents of the future, we also expect big struggles. While there are numerous obvious exceptions, many times in the actual doing, they aren’t very difficult. To be sure, I have struggled about whether to take a step or not, but that is different from taking the step itself. In those cases, the big struggle wasn’t always against fear, but rather apathy. It is so easy to fall into justifications like, “What’s the point? Nothing will ever change.” Or the ever-popular, “What can just one person do?”

But I think that one of the big defining factors of Rubicon moments is the rules: either the rules we keep in those moments – or those we break. Here I’m considering the word “rules” to stretch far beyond formal laws and social mores to include things like personal commitments. It is the rules that put the teeth into decisions because regardless of whether you choose to keep or disregard a given rule, there will be repercussions. For example, while Julius Caesar’s decision to cross the Rubicon led to his becoming the absolute ruler of Rome, it also led to his death just five years later on the 15th of March, 44 BC.

In the same way, if I had done something different at any of my big Rubicon moments, my life would have been very different. But that fact highlights a problem: if looking back I see that I made the wrong choice, am I just stuck with the consequences? Thankfully, we are not, due to what I like to call anti-Rubicon opportunities – also called redemption. For instance, I have mentioned before that Janet was my third wife. I made two very bad decisions and crossed two “rivers” that I should not have. The damage done by divorce can be redeemed, but it is not something I could do on my own – it needed divine intervention. Although, there are still visible cracks, like Japanese Kintsugi, God can make my life’s cracks and broken spots beautiful, such as when you consider that my five (surviving) kids are all just brothers and sisters. The prefix “half” doesn’t exist in their vocabularies.

So if you have crossed some rivers that you should not have, take heart. The damage is redeemable.

In Christ, Amen ☩

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A prayer for when you made a really bad choice…

“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 plans and creation. But today I want to bless You especially for Your unlimited ability to redeem that which is indentured, repair that which is broken and find that which is lost. I feel so often like my life is an unmitigated mess, but bit by bit, piece by piece, You manage to miraculously reassemble the shards of my life into something beautiful. Thank you! Amen.”

UNambiguous Loss

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 are preparing for our move, and as you read this we are making our final preparations for the movers who, if everything goes as planned, will arrive bright and early tomorrow morning and start packing us. The movers estimate that it will take eight hours to get everything in the truck, so the day after, we will start our migration north.

Getting ready to move means going through a lot of old papers, especially in our garage. I have told you before that Janet was a school teacher. However, she was also something of a pack rat. In our garage we have boxes with her grade books from classes she taught 40 years or more ago. Likewise, there were boxes of canceled checks that were not only written on accounts that don’t exist anymore, but in some cases on banks that don’t exist anymore!

However, I also found other things… One such find was a note that she wrote sometime in August of 2019. I know that because in it, she refers to the shooting that took place on the 3rd of that month where a deranged man shot and killed 22 people at a Walmart in El Paso. I don’t know why she wrote it or who it was for as she never showed it to me. She was apparently worried that I would be “inspired” by his actions and go on a similar killing spree.

I well remember those times. She was constantly worried about anything and everything. It was then that I started having to censor the radio and TV programming. I also had to be very careful about what I said around her because there was no knowing what news item or bit of conversation she would pick up on and start obsessing over.

For example, if I came home from work upset about something trivial that happened at work, she would right away jump to the conclusion that I was about to get fired, and she would go on about it for days. Ironically, by the time I eventually did get fired (for not communicating well!) her condition had degenerated to the point that she only asked me a couple times if we had enough money, and that was about it.

Thankfully, I had been putting a bit of money aside and we had enough for two months, which I was able to stretch to three months. Still, God brought this job along just in time.

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Several months ago I wrote a post entitled Ambiguous Loss. As I wrote then, this sort of loss can take two forms, the most common of which is feeling you have lost someone when in some way they are still there. A typical example of this type of loss is when dementia turns your gentle, loving spouse into a harsh, judgmental stranger. Or when your bubbly, outgoing loved one starts becoming sullen and unresponsive.

UNambiguous Loss is the old-fashioned, familiar kind, where the bed is empty and you are now officially a widow, widower, or orphan.

(Which, by the way, makes me wonder why isn’t there a word for describing someone who has lost a sibling? We really should have one…)

Even when the loss is finally unambiguous, the ambiguity can nevertheless continue in other ways. For example, a few days ago I got a care package from Houston Hospice that included a couple of books on the topic of grieving. Unfortunately, the books were not written with the world of caregivers in mind. Reading them, you find that the books do spend a page or two talking about death after a “prolonged illness.” The problem is that as you read further, you see that they define “prolonged” in terms of weeks and months – not years or even decades. Not surprisingly then, these books were written assuming a timeline that proceeds something like this:

  1. Loved one becomes ill, injured, etc.
  2. Loved one dies.
  3. Grief starts.

To be fair, this plan works fine for the majority of deaths – like if Janet had been hit by a bus, or had suffered a sudden heart attack. But it falls apart when the illness takes years or decades to reach its solemn conclusion. The problem is that in the sort of scenario many caregivers face, the three steps are no longer discrete points in time delineated by sharp edges separating one step from the next.

Rather, the steps get smeared out in time like a rain drop running down a window, or a tear running down a cheek. As a result, the steps start overlapping, getting smeared together. Or to put it another way, each step becomes a process. Sometimes it felt as though all three were happening simultaneously.

To begin with, it is not at all clear when Janet became ill – or is that even the right way to formulate the question? Perhaps I should say it is not at all clear when Janet became symptomatic. Remember, HD is a genetic condition so there was never a time in her life when her genes weren’t messed up. But even determining the onset of symptoms can be fuzzy. Her jaw used to “pop” shut. She said she had TMJ (temporomandibular joint problems) but maybe it was the HD.

But surely death is an absolute, isn’t it? Well in one sense, yes. But in another, I’m not so sure. As I look back, I try to figure out when the Janet I knew started dying. For months, my vigil by her bed had not been about waiting for death, because she seemed to be drifting back and forth between two worlds: the one where we all live, and the one where she is now. So even the concept of death became indistinct and cloudy.

In the end, about all I do know for sure is that, for me, the grieving did certainly not start the 10th of January 2021. For me, and I suspect many others who are caring for loved ones that truly have “prolonged illnesses,” the grieving starts a long time before the person you love and are caring for stops breathing.

In fact, if you look at any list of symptoms of grief you will see that the list is largely indistinguishable from the normal everyday experience of being a long term caregiver. Depression? Check. Feelings of guilt? Check. Exhaustion? Loss of Control? Loneliness? Check, check and check again!

I guess the point here is that things we read can serve to set out expectations of what is right or normal during grieving. So what happens when someone who is already in a precarious state emotionally reads a book that models grieving in a way that is so very different from their own experience? I’ll tell you one thing that can happen: the feelings of guilt that were never very far away, jump out and, taking center stage, start yelling at you.

“See your wife is dead and you can’t even do that right! Man, you are a piece of work! There is nothing that you can’t mess up.”

Needless to say, those sorts of comments are a load of what my Dad used to put on his roses.

Beyond the guilt, the other big issue that has been making itself known is anxiety – especially the fear of being alone. It suddenly struck me today that things are getting more and more serious between Frannie and her boyfriend. His mom and aunt are calling her regularly on the phone and she has met most of his family – of course everybody loves her. So Frannie could be moving back to Houston in the next few months to get married. Which, to be clear, would be a good thing. I have always wanted Frannie to have a life of her own, but still…

So, day by day, the battle goes on and along the way I am learning a few things. For example, it is pretty clear to me that Frannie and I have a lot deeper understanding of love than we would have had otherwise. I remember once, a long time ago, telling Frannie while I was helping Janet get cleaned up after a pee accident, “Don’t even consider telling a young man ‘I love you’ unless you would be willing to do this for him.”

By George, I think she has been listening.

In Christ, Amen ☩

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A prayer for when your grief seems overwhelming…

“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 gifts of strength and wisdom that You give so richly to all Your children. But today I want to bless You especially for eyes and ears that are learning to work better and better. Many times when he was among us in the flesh, Jesus talked about needing eyes that can see and ears that can hear. The lessons are hard, but I am learning to develop both. Thank you. Amen.”

Taking Time, Learning to See

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 has been spent getting ready for the big move to our new home. We were approved to take possession of the property on the 7th and met with a couple of moving company representatives on Saturday to get quotes.

Frannie will be glad to leave the apartment and the town we’ve been living in for the past several years because there are way too many “ghosts” inhabiting the area – memories of places we frequented with Janet, and things we did in better times. Perhaps, moving is the best thing after all. We need a clean break, and the job is requiring us to make one.

The name of the town is “Mineral Wells,” due to the numerous mineral springs in the area. Back in the day, I guess the area was quite popular for people wanting to “take the waters.” The town has a population of about 17,000, which is about the same size as the town I grew up in.

Another nice confirmation that this will be a good place for us is that I discovered St Mark’s Lutheran Church, only a five- to ten-minute walk from our front door. That is significant, not because we will be going there, but for the name. St Mark’s in Abington, Massachusetts is the first church Janet and I joined after our wedding 35 years ago. And it was also the church where our son was baptized.

I did, however, find the church we will be attending, about a ten minute drive away. It is named Divine Mercy Lutheran, and the services and the people are wonderful. Plus, I really like the name, as “divine mercy” is what is getting me through each day. Thankfully, that is a resource that is in endless supply – all you have to do is ask, and you shall receive.

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A few days ago I was driving and (as people do when they are new to an area) was tuning around on the radio, looking for a good station. I came across a radio program where the people were talking about the tragedy of doctors recommending aborting babies that are “imperfect” in some way. This got me thinking about the birth of our son, so I did something I hardly ever do – I called in.

While on hold, I discovered that the program was on the nationwide Roman Catholic radio network, Relevant Radio. So if you also happened to be listening and heard “Michael from Texas” – yep, that was me. And I even got in a quick plug for HD awareness. In any case, my story was very simple: When Janet was pregnant for the first time, we had an amniocentesis done and the results were not good. They showed the potential for a condition called “trisomy 13.” Babies with this condition are born with very severe deformities that are always fatal. We were told that these babies rarely see six months of age, and that we should abort “it” as soon as possible.

This was a situation Janet and I had not considered, but after calming down from the panic that the doctors had done their best to instill, we made the decision to not abort and that if the baby lived six months, six weeks, or six days, he would be loved every minute of that time.

As I said on the radio, to make a long story short, the tests were wrong. Our son did not have trisomy 13 and if we had gone through with the abortion, as the medical “experts” had advised, we would have killed a perfectly normal, healthy baby – our son who is, today, a Major in the US Army with three daughters of his own.

The point of my telling you this is not really about abortion per se, but the title of this post: Taking Time, Learning to See.

While I was still taking care of Janet, it seemed like every day was filled with the fine details of caring for her, and appropriately so. But one of the things I have had time to do now, as a part of the grieving process, is to slow down and consider the big picture of life – the larger story arcs of the past 35 years. And I have begun to notice some interesting patterns.

For example, people sometimes asked me how I could do what I was doing. It was, after all, clearly taking its toll. To be honest, when I was in the middle of it all, the answers I gave tended to be the kind that resulted in the person not asking that kind of “fool question” again. Now I would be more gentle (I hope) in formulating my response.

When Janet and I met, she was living with the results of growing up with a father that was feeling the effects of undiagnosed Huntington’s Disease. Due to his abusiveness, she had grown hard and cold. She said that the engagement ring I gave her (which had a lot of frilly gold work on it) was the first piece of feminine jewelry she had ever owned. Her choice was between staying stuck in what she grew up with, or with the help of God, moving on. Likewise, I could have looked her over and decided she was a train wreck on two legs. We chose life.

After we were married, we had the choice of following the advice of doctors or accepting whatever happened as a blessing. We chose life.

Finally, when she was diagnosed with Huntington’s Disease she still had choices – there are places in the US where it is now legal to murder yourself. But again, we chose life.

Get the point? There was a pattern in our lives together that I had not really seen before. I was much too close to each individual decision to see them as being connected. But now I do. I understand that no decision is ever made in isolation, but forms a part of a pattern that runs throughout our life. I have met people who have had huge shifts in their lives but looking back later realized that their “big change” was part of a larger reality that they hadn’t seen previously.

This is what I meant a bit ago when I talked about the “big picture” or “long story arcs” in our lives. During this grieving process, I have come to see the value in: “Taking Time, Learning to See.” The thing I have discovered with my new vision is a clearer view of who Janet and I both are, and (especially) who God is.

The other arc I have come to recognize is one stretching back generations. There’s my father who, despite the horrific conditions in which he was raised, chose life in the US Army over a probable death in prison. There’s his mother, who, after the death of her first husband, chose life by marrying my grandfather. There’s my great-grandparents who chose life in a new country over war in what is now the Czech Republic. And the story goes on and on.

To be clear, none of the stories were “fairytales” and nobody “lived happily ever after.” They were all, on one level, imperfect and flawed in some way, but they all resulted in something good that led to a new and better future. Which is not too surprising given The Hand that is at work. The hand of a Workman that is an expert at taking broken things and making them beautiful: broken hearts, broken lives, broken homes – even broken worlds.

By examining the bigger picture in which I have a part, I see that even in the times when I didn’t know which way to turn, I was never really lost. Moreover, problem resolution may take decades or even generations, but in the end, hopes are fulfilled and promises are kept.

In Christ, Amen ☩

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A prayer for when you are feeling aimless…

“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 blessings of life. But today I want to bless You especially for Your eternal perspective. It is at times frustrating to have to wait, but by faith I can know that life in Your presence is always brimming over with hope – even when, for a time, I can’t see it. Amen.”

You can’t choose, what you can’t choose

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…

I want to start this week with a word of gratitude for the support that has been showered on my daughter Frannie and me. At one point, I thought of trying to respond to each one of you, but that plan quickly proved impractical. In the first place, there were so many comments that I couldn’t keep up with them all. But more importantly, I’m not totally sure that I even saw them all. The problem is that when you start receiving a lot of comments, Facebook doesn’t generate notifications for every one. So let me just say to all of you who commented, liked, or otherwise reacted to my posts about Janet’s passing: Thank you so much! It has been a true blessing to my family as we navigate these uncertain waters.

I want to especially thank all of you who shared how my writing has helped you to, in some small way, confront the challenges that you have before you – which is exactly what I was hoping to accomplish when I started this effort some 14 months ago.

One of the hardest parts of this effort has always been to keep myself engaged. As I have alluded to many times, the challenge is to resist the strong impulse to hide behind a façade that would allow me to avoid letting people really see what was happening in our life. But what kept bringing me back was the sure knowledge that what really heals (myself and others) is not convincing myself that everything is okay, but ripping off the bandages so others can see the wounds and burns – especially the self-inflicted ones. The simple truth is that those sorts of things are what give hope, and hope is what enable us to survive what we are going through.

Of course, that truth runs counter to what our culture is constantly telling us. Culture tells us that only perfection is acceptable – no wonder we see so much hopelessness around us. The mere hint of a skeleton hiding in someone’s closet is enough to get them ostracized and “canceled.” No wonder, also that there is so little intellectual honesty. Many people feel – and not without reason – that they can’t afford to be honest. Recently, I read an essay by a fellow named Brad Listi and one sentence really jumped out at me:

…I think that in the age of social media, we get to curate ourselves to such a fanatical degree that a lot of people have become masterly (sic) at cultivating online personas or a written persona or a digitally presented persona that is sort of like Teflon—all the rough edges are sanded away.

Setting to one side the fact that the author clearly has no idea what Teflon is, that statement certainly rings true as an indictment of the cultural environment that surrounds us every day. But for the most part that is not what I have found here among the folks that read and respond to my writing. So again, let me thank you all for the support, strength, and hope that you have given me and my family. We’ll get each other through this…

Whatever you are going through right now, it is survivable.

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Recently, in sharing the story of what has been happening in my life. I have had quite a few people say to me that with Janet gone, I can at least do what I want to do now. To be clear, I have no doubt what they meant when they spoke those words to me. What they intended to say was that at least life will be easier now, without the burden of caring for a terminally ill spouse – a point which is most certainly true!

However, given the way my brain works, it didn’t take me long to see that although they didn’t mean it in this way, the statement had an alternate understanding that highlighted a truth about myself, and I would suspect many other caregivers. That same statement could also imply that in some way my service to Janet was something that I was forced to do – it is that idea that I want to explore a bit.

Underlying the idea of being “forced” to serve is the belief that no one in their right mind would choose to do things that are hard and unpleasant. Perhaps this is why so many people today have a hard time understanding people in the military, first responders, … and of course, caregivers. We live in a society where the main deity being worshiped is named “Self.” Hence, even when people talk about altruism, it is often couched in terms that are ultimately selfish. For example, we are told that we should give to one cause or another because it “feels good to do good.” In other words, altruism isn’t really about helping the other person: it’s about making yourself feel good.

However, real altruism often imposes far more penalties than it bestows benefits. All caregivers have at one time or another gone to bed mentally and physically exhausted, and the only (minimal) comfort they had was that they did what needed to be done. Perhaps that is the normal state of affairs for you right now. I can certainly remember many times when it was so for me. A phrase that is often heard during the grueling training required to become a Navy Seal is, “Embrace the suck.” One former Seal has written a book of the same name. He says that what the phrase means is to:

…Lean into the suffering and get comfortable being very uncomfortable.

Whether you are fighting a war against a foreign enemy or a disease that is slowly destroying your loved one, in many ways the personal challenge is the same: proactively learning to get comfortable with being uncomfortable.

People have asked whether I wished that I had chosen a different path in life, and my answer is always the same. I would have preferred that Janet and her father did not have Huntington’s Disease. I would have preferred being able to spend more time laughing and cuddling with Janet. I would have preferred retiring and growing old with Janet while travelling around the country in an RV visiting our kids and grandkids. I would have preferred all those things and so much more, but all those preferences have one thing in common: they weren’t possible. And, as the title of this post points out, “You can’t choose what you can’t choose.”

I couldn’t choose a different circumstance or a different Janet because those options didn’t exist. At the end of the day we all – the great and the small – have to deal with what really is, and reality always wins out. We can for a time choose to ignore reality, but that is not the same thing as changing what is ultimately true. I could have chosen to divorce Janet when it became clear that she was not changing as I thought she would in response to my love. I could have also chosen to divorce her years later when I learned why she was not changing. Then there were multiple times when I could have chosen to divorce her for being verbally and physically abusive.

However, none of those “choices” would have changed the underlying reality that Janet was desperately sick and needed help. And none of them would change the reality of her ultimate fate, because ignoring reality doesn’t make it less real. Moreover, while reality may be uncomfortable or even painful, the thing to remember is that the very attempt to ignore reality imposes its own penalty that gets added on top of any discomfort that reality imposes.

So you hurt because reality sometimes stinks, and you have additional pain from trying to ignore it.

In the end, I choose reality. I choose to take on the job in front of me, to serve and to get comfortable with being uncomfortable.

And I thank God for the opportunity to do so.

In Christ, Amen ☩

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A prayer for when you are feeling “uncomfortable”…

“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 beauty of the cosmos that you created. But today I want to bless You especially for the times when reality is not particularly beautiful or pleasant. Help me to remember that I am living in a world that is broken and hurting, and remind me that you are setting things right, bit by bit. Thank you also for using me – flawed though I may be – to effect change and to help in setting things right. Please Lord, show me how to keep my eyes open to the brokenness around me and give me the courage and wisdom to set it right. Amen.”

Okay, Now What?

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 is the section where I would normally give an update on my Janet’s health condition, but that is clearly no longer of any significance, given her change of residence to heaven.

So now come the adaptations and the wondering about how to be a widower. And the first step in that process is figuring out how to tell someone what happened without breaking down in tears. I got a lot of opportunity to practice this week because I started a new job on Wednesday and, because the job is in a different part of the state, I was looking for a house or apartment for Frannie and I to rent. The conversation would go something like this:

“So, Mr. Porter, how many adults will be living here?”

“Just two, my daughter and I.”

“Oh?”

Nothing judgmental there, all she said was, “Oh?” So why do I feel like I’m being interrogated?

“Yes, my wife just passed away Sunday from a degenerative neurological condition called Huntington’s Disease. It has been described as having Alzheimer’s, Parkinson’s and ALS simultaneously…”

“Oh, I’m so sorry for your loss.”

At this point, I would typically just say “Thank you,” and try to move on with the conversation. Occasionally, they would say something about how “brave” I was. I know that such comments are intended as compliments or reassurance. But, in this context at least, being “brave” simply means continuing to move forward and refusing to die too. Most people have no idea how many ways a person can be dead and still continue to breathe.

Semper Prorsum.

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I know what you’re thinking: “Didn’t he say last week that he wasn’t going to be posting for a while?” And you are right. The only problem was that when it got right down to it, I couldn’t keep myself from writing. The title is really what I have been going through this week: “Now what?” Of course that simple question could be answered in a number of ways:

  • Now what, for our family?
  • Now what, for Frannie and me personally?
  • Now what, for my writing and this blog?
  • Now what, for my job?

But as I contemplated it, I had a thought that this question, as simple and as common as it is, may actually be part of the problem – or at least, part of my problem.

When Janet was still ill, I used to ask myself this question quite often because I was trying to understand where things were going. What was the next symptom? What was the next challenge to be faced and overcome? I wanted to know what the future held. And now I am feeling the same desire – though for a slightly different reason. So what, in the final analysis, has Janet’s transition to the next life fundamentally changed? As it turns out, not a whole lot.

You see, we all like to tell ourselves that once our loved one has gone on or the present predicament has passed, life will calm down and be more predictable. Sounds good in theory, but the truth is that life remains stubbornly UNpredictable. The exact nature of the unpredictability may change, but at the end of the day, I’m still left trying to figure out what is coming down the road so I know what to do about it. I still think that I can prevent more “bad stuff” from happening – all the while ignoring the fact that there isn’t anything I can do. Not really.

Oh, I can take action based on projections and predictions of likely future events, but those are really just guesses – and sometimes not even very well-educated ones. So what should I do? Well, stopping isn’t really an option. Likewise, hiding and licking my wounds sounds oh so comforting, but is likewise out. All that is left, really, is for me to do the same as I have always done: take it one day at a time, doing what God has put before me for that day. Or at least, that’s the same as I have always done on my better days…

In any case, this week I started my new job and I think I am going to enjoy it, as there is a lot of work to do and solid support in the company to get it done. Can’t ask for much more than that! I also found a house for us to move to in Mineral Wells, Texas. It will be a long drive to work, but as compensation, it will be a long drive through some of the prettiest country on earth: the Texas Hill Country!

To give you a sense of my new work, this is a picture of the morning rush hour in beautiful downtown Cisco, Texas.

This is going to be great!

In Christ, Amen ☩

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A prayer for when you feel directionless…

“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 there to guide and direct the steps of Your people, and through them, the world. But today I want to bless You especially for the grace that keeps my feet moving and guides their path. You know that sometimes I feel like stopping and hiding. Thank You for the faith to keep walking. Amen.”

In Memoriam, J.A.P.

בָּרוּךְ אַתָּה ה’ אֱ-לֹהֵינוּ מֶלֶךְ הָעוֹלָם,

Barukh ata Adonai Eloheinu, melekh ha’olam
Blessed are You Lord God, King of the Universe

The above phrase begins most important Jewish prayers because regardless of whatever else you are wanting to say, it is important to start by putting things in their proper context – and there are several things that I want to say, and that is the proper context for saying them.

First, on Jan 10th 2021 at 2:30am my beloved wife Janet Anne Porter passed from this world into eternity due to the actions of Huntington’s Disease. Note that I didn’t say, “…the victim of Huntington’s Disease…” because Janet was never a “victim” of anything. She may have lost the physical battle, but was spiritually victorious.

Second, though I am crying (copiously), now is not the time for just sadness. I also rejoice because while her body is cold and inert, I know that the part of her that was really “her” survived HD. And I don’t mean that in the soft sort of way that is common today, as in “…she will live on in our hearts forever…” While that is most certainly true, it is not what I mean.

Janet was far more than an amalgamation of biochemical interactions that other amalgamations of biochemical interactions (i.e. us) interpreted to be a “person.” For Janet, as with all people, there was also that part of her that wasn’t confined to the limits of her physical body, and because it is not dependent upon that body for its existence, it continues to live even as the body that housed it degenerates and dies.

Call that part of her (or you!) the spirit or soul – the label isn’t what matters. What matters is that it lives on and, as you read this, Janet is united with the One who created her and the spirits of all those friends and family members that have gone before her: people like her mother and father, her older brother John who also had HD, and her beloved godmother Aunt Ann whom she missed so much. And then there is the broader gathering of the faithful that The Apostles’ Creed simply refers to as “the communion of saints.”
No doubt she will be anxiously awaiting her other brother, Danny, who still has HD.

What all that reuniting looks like I have no idea, but I know and celebrate this: Janet’s mind is again clear, her hands and feet are steady, and she can now run and dance again to the tune that she, and not Dr Huntington, calls.

Third, I want to assure you, my readers, that just as Janet’s life did not end, mine did not either. As you might imagine, I may be “off the air” for a bit with family responsibilities and what not, but I am not going away. The work that my sister (with inspiration from God) set before me as a challenge, is far from done. We still have a very long way to travel together, and there are unfortunately new folks joining our solemn caravan every day.

If you wish to memorialize Janet and her contribution to the world, please make a donation in her name to the support and medical research organization for the disease that affects you, and which is active in your country.

…and please remember in your prayers those who are still fighting the good fight for the care and dignity of our families.

In Christ, Amen ☩

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A prayer for when you are confronting the end…
“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 reality of eternity. But today I want to bless You especially for providing for my loved one who now lives on in Your Divine Presence. Even though I cry now, even as You did when Your friend Lazarus died, I know that the grave does not have the final word and the doorway that we call death is not a corrupting, defeated end, but a glorious new beginning. Amen.”

I’ll see your “Tempus fugit”
…and raise you a “Carpe diem”

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…

As I write this it is 8 pm Friday night, January 8th. For the past three or four days Janet has been fighting a battle with almost nonstop diarrhea. She hasn’t eaten anything in several days, but still the flow continues. In addition, this morning she was experiencing a raging thirst but had lost the ability to suck on a straw.

After a few minutes’ search I found the Provale cup that I bought a year ago but which, at the time, Janet refused to use. The cup is designed such that each time it is tipped, it only dispenses a precisely metered amount of fluid – either 5- or 10-cc. This helped with her thirst, but was a short-term solution at best.

A bit later, the hospice nurse called on the phone and after I described what was happening, she said that we may need to get Janet into their inpatient facility. Twenty minutes later, the nurse was in our living room and, after examining Janet, she called the doctor and got orders to transport her to their facility. The ambulance arrived a bit after 3 pm and Janet was on her way in about 20 minutes.

Between the time that the orders went in and the ambulance arrived, we got a phone call from Janet’s brother in Massachusetts. He hasn’t spoken to her in a couple years, and in her current extremely confused mental state, I didn’t know whether she would understand what he said to her or not – or whether she would even recognize his voice. But I held the phone up to her ear and told Dan to go ahead and speak.

There were a few comments like “You need to rest and get well.” Then he got to the main point of the call and said, “I love you, Janet.” And Janet replied, very softly, “Love you.” I think he may have finally understood that he might not get another chance to speak to his only sister – on earth at least.

About a quarter to 5 pm, I got a call from the intake nurse at Houston Hospice and she told me that Janet had arrived safely and was at last resting comfortably. They examined her and found additional blockage, which they cleared out, and then they put a catheter back in place and started an IV with a morphine drip to make her more comfortable.

Frannie and I were able to visit her Saturday. Here is her room. Frannie is taking a nap next to Janet. Janet is covered by her two favorite fleece blankets.

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Many questions that newly diagnosed patients have on many support forums can be boiled down to one common concern. While the specifics obviously vary from one condition to the next, the basic question is the same: “How much time do I have?”

While that is a very understandable concern for everyone involved, it can be a bit problematic. In the first place, unless your doctor is a psychic or a prophet, there is no way of knowing how much time you have left. Consequently, you are left with statistical answers and educated guesses. As an example of how troublesome statistics can be, consider the situation with Huntington’s Disease.

An often-cited statistic is that average survival is 20 years after diagnosis. However, that number was derived in the past when it was mainly the physical symptoms that were driving people to the doctor to get a diagnosis. But that situation has changed. Today, more people are going to the doctor with the onset of the emotional and cognitive symptoms, which some studies say may precede the physical symptoms by as much as 20 or 30 years. Then, add on top of all of that the fact that people often have nervous tics or mannerisms that have nothing to do with HD or any other pathology, and you can see that attempting to apply an average to one specific life can become very dicey indeed.

So what are we to do? My recommendation is to stop trying to see into the future. The really important statistic is this one: Life has a 100% fatality rate. Moreover, whatever disease you have may not kill you. People with all kinds of serious neurological diseases die from injuries in car wrecks, heart attacks, cancer, or you name it. The only guarantee my Janet has is that she won’t die of old age. Everything else is still on the table.

The only reasonable course of action is to recognize the concepts of Tempus Fugit and Carpe Diem, specified in the post title:

Tempus Fugit – Time flies. As Chaucer observed in 1395 in his work The Canterbury Tales, “Time and tide wait for no man.” The point here is that there are no timeouts in life. You may at times feel like you are on the sidelines watching the game, or marking time and going nowhere (I know I often have), but that feeling is an illusion. The truth is that even when there is no apparent progress, life is still moving on, and the changes that need to happen are occurring at the pace in which they need to occur. Sadly, many times we only recognize the changes and developments in hindsight.

This idea feeds seamlessly into the second:

Carpe Diem – Seize the day. If every day passes by heedless of whether we are involved or not, the only rational response is to fully engage with each day and wring out of it every drop of living that we can derive. In order to do that, we need to recognize that this living can take two forms: receiving all that each day offers, and giving all that we have to offer it.

But to seize each day in this manner, our eyes need to be open and our senses tuned to that which is outside ourselves. In the military, this tuning of the senses is called “situational awareness,” and all it means is to be conscious of what is going on around us. That is often much easier said than done. At times like these when we are surrounded by so much ugliness and anger, it can be comforting – and oh so much easier – to simply tune out the world and curl up in a nice quiet bunker somewhere until things get better.

However, if you do, just be aware that nothing will ever get better. Life only improves when people like you and I are involved in the world around us and doing what we were put here to do, even if our own individual acts don’t seem very big or significant.

The other day while standing in line at Walmart, I noticed that a woman in one of their motorized carts had two large cases of water in her basket and no way to get them onto the conveyor belt to be rung up. So I walked up and offered to help her get them onto the counter. Then later, I noticed the same lady’s car was parked directly across the parking lane from my car, so I went over and again lifted her water into the trunk of her vehicle. Now will world peace be brought about because I helped her? No. Will I get extra brownie points in heaven for doing a good deed? I sincerely doubt it.

So what was the importance in what I did? Simply this: I saw her. I allowed myself to become aware of a fellow human being and their need without imposing on them what I thought they needed. And if more people did that, perhaps we would get a bit more peace in the world.

Remember that each fleeting day is a gift from our Creator and in response to His gift, seize it in both hands and with your eyes wide open. Right now is all we really have.

In Christ, Amen ☩

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A prayer for when you are worried about tomorrow…

“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 Lord of all that is, all that ever was, all that ever will be, and all that ever could be. But today I want to bless You especially for being the Lord of the small subset of the cosmos in which I live. Thank You for caring about me, individually. Thank You for giving me senses with which I can perceive those around me, and hands with which I can help to meet their needs, no matter how small. Thank You for this day of my life, please help me to live it to the fullest. Amen.”

First Time – Last Time

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…

Well, Janet made it through New Year’s, though she probably has no idea that it occurred. Per tradition, we are keeping her little Christmas tree lit until Epiphany (Jan 6th) which commemorates the arrival of the Magi in Bethlehem.

In a little over a week I will start my new job, so, to provide better care, I have changed the hospice organization we were with to a larger one, which has more resources and so will be able to provide better services during the transition time. Of course, a lot of the details are dependent upon the transition that Janet ends up making. She could, after all, transition directly to Heaven before the job even starts.

Lately, I have found my prayers for Janet have changed. More and more I find myself praying for her peace as she moves from this world to the next. I am praying for no upset, no anger, no drama, and no pain. I read a story this week written by Douglas Gresham, the older son of Joy Davidman and the stepson of C.S. Lewis. At one point, when he was nine, he prayed for her cancer to go away. Shortly thereafter, it indeed did go into remission. But then five years later, it came back and he related how he again prayed:

“I was fourteen by this stage—not a little boy anymore. He (God) said: If you need me to do this, I can fix it again. And I thought to myself: Asking for the same miracle twice would probably be a greedy thing to do, and my mother had gone through enough agony the first time. So I said: Thy will be done. I walked out, and she died two days later.”

Well, I’m not 14, but I know the feeling. There comes a time when you suddenly realize that your desire for their survival is not about them at all, but is in actuality a rather low form of selfishness. It can be hard to accept that the best thing for your loved one is to go on to what is next for them because if you profoundly love someone you want to be with them. Very natural, but nevertheless a major gut check.

Unfortunately, another component leading to the trauma in the survivor can be the expectations of others. I have seen people (and I’m sure you have too) that use the ways and degrees that you mourn to measure how much you really cared for the person. In other words, if your behavior doesn’t agree with their image of what mourning is supposed to look like, you must not have really cared. Of course this reaction isn’t new. We even see it documented in scripture when David doesn’t mourn “properly” for his son by Bathsheba.

I guess this discussion is just a long-form way of saying that when Janet’s ultimate transition takes place, I don’t know what my mourning will look like. I may collapse in tears on the floor – or I may not. But regardless, know that my love for Janet is real and that, as always, I desire that she be happy and healthy. And also know that, like all caregivers of those with neuro-degenerative conditions, the mourning started a long time ago.

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So January has finally come as it usually does, festooned with streamers, confetti, and champagne bottles – not to mention the requisite sorrows about the past and hopes for the future. Moreover, this sort of thing appears to be inherent in our makeup as humans, for end of year observances have been going on for thousands of years with surprising consistency. For example, despite how it may appear, the concept of a New Year’s Resolution is not a marketing scheme thought up by the operators of gyms and spas. In fact, the idea goes back to at least 2000 BC with the ancient Babylonians. Some may find it comforting that, according to archaeologists, the ancients were no better at keeping their resolutions than we are.

Another aspect of the New Year is visible in the month’s name: January. Though there is a bit of controversy, it was probably named for the Roman god Janus who had two faces: One facing forwards, and one backwards. A rarity in the Roman pantheon, Janus was not inherited in any form from the Greeks, but was instead a purely Roman invention. Janus started as the god of doorways, but this duty quickly expanded to covering any sort of transition. A sense of that meaning is even retained today as we use the New Year as an excuse to indulge in endless retrospectives of the past and prognostication over what the future may hold.

As a caregiver, however, I find it difficult to get too excited because in so many ways, New Year’s is just another day. There is food to prepare and diapers to change – and of course, naps to be taken when (if) the opportunity arises.

The other point is to recognize the date’s apparent arbitrariness. Why does January 1st have such an important place in the culture? The historical answer to that question lies with a couple of Popes and a Roman emperor or two. But after the history lesson, the answer to our question becomes real clear: There is no reason for the first day of January to be any more important than any other day. It is a time landmark because we say it is.

Of course, the converse is also true. There is no reason for the first day of January to be any less important than any other day. Hence it is not a day to be wasted or passed over mindlessly. To do so runs the risk of missing, as the title says, “First Times” and “Last times” because they can both arise without warning. For instance, the first time she shows a particular symptom, or the last time we kiss. Consequently, I also spend time praying for vigilance to not miss any of these precious moments. Like every day, it is to be lived to the fullest in service to those around us.

Finally, we need to recognize that nothing is, in the end, truly arbitrary. Just because we can’t divine a reason, that doesn’t mean a reason doesn’t exist. The point is that God has a habit of taking things that have no intrinsic meaning and giving them meaning – this is how stones become monuments, tents become tabernacles and a simple meal eaten in haste becomes a sign to the world of God’s faithfulness. So, remember the fundamental question behind that meal, “Why is this night different from all other nights?” and remember also the answer: “Because on this night God acts.”

In Christ, Amen ☩

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A prayer for when you are on the cusp of change…

“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 same yesterday, today, and forever. But today I want to bless You especially for being there for me when I am in the midst of change that I don’t understand and traveling on a road that I can see only dimly. Thank you for guiding and directing my steps. Please show me how to be a light for the steps of others. Amen.”