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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.”

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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.”

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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.”

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Doing the Right Thing

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…

Got Janet outside a bit this week. She had to get her blood test redone for her thyroid meds. As it turns out, she has lost enough weight (she’s now down to 103 lbs) that her PCP has decided to reduce her dose from 60mg down to 30mg. By the way, for her thyroid she takes a natural product called Armour Thyroid.

“Oh Armour, you mean like the meat packing company?”

Yes, exactly like the meat packing company. The medication consists of desiccated and prepared porcine (pig) thyroid glands. The more common alternative is the synthetic hormone levothyroxine (often sold under the brand name Synthroid). Unfortunately, this synthetic hormone works slightly differently and Janet does not tolerate it well. Over the years we have had to do a lot to maintain her supply. At one point, the government tried to shut down production of the prepared tablets by issuing a total recall for unknown reasons. In response, we had to go to a “compounding pharmacy” that would buy the medication in bulk from the manufacturer and make up capsules for Janet to take. Of course, that source wasn’t covered by our insurance…

But back to this week. It did Janet a world of good for her to get out. After getting the blood draw done, we had a bit of shopping to do, and although all she did was sit in the car, it was like a tonic for her. She was able to see people and feel the warmth of the sun on her face. Sometimes doing things that make you feel healthy are more important than blindly conforming to someone else’s vision of what it means to be “safe.”

Unfortunately, that euphoria didn’t last and a couple days later I almost had to bring her to the hospital due to suicidal ideation. We now have two security cameras (with motion detection) watching her, and she has a new medical alert bracelet so she can call for help – and all the sharp silverware and cutlery is up, out of her reach.

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This week, I have been thinking a lot about an oft-told myth that to avoid trouble with others all it takes is do what is right and tell the truth. Thanks to the drama being played out every night on the evening news, we can see how tragically wrong-headed that idea is. Telling the truth is just as likely to get you stoned as it is to get you praised. And a big reason for this tragedy is that the standard of public discourse today seems to be, increasingly, questions in the form of the old joke:

“So, are you still beating your wife?”

In other words, before you have even opened your mouth, the inquisitor (and I use that word deliberately) has already decided you are guilty. The only matter left to determine is, of what?

Now, it’s one thing if all you have at stake is your personal comfort, livelihood, or freedom. But what happens if you are a caregiver for someone who is dependent upon you? In that situation, things get a lot more complicated. For example, you can’t simply say, “…go along, to get along…” because “getting along” might mean doing or submitting to something that is harmful to the one(s) for whom you are caring. However, if you resist too much and end up in jail for your “crimes” – like a father who was recently arrested for playing catch with his daughter in an empty park – who takes care of your loved one then?

If you are feeling confused and hopeless right now, know that those feelings are by design. You are experiencing exactly what many in power today (as well as the would-be power-brokers) want you to feel. Their goal is to fill your mind with so much doubt and fear that you are willing to be led by anyone proclaiming that they can see the way out of our current troubles. Of course, the problem with these “solutions” is that the people handing them out only provide advice that is going to benefit themselves, with the result that you, your loved one, and your real needs are left twisting in the wind.

Today, there are people offering solutions from a mad variety of political, sociological, and religious positions. However, the choice between them often boils down to who can give out the most “goodies” – and it matters little whether the advisor is offering money, power, enlightenment, or Heaven. Rarely, if ever, do we hear the argument made about which of these myriad of options is true.

In the past, there was a method for identifying what was true that revolved around a “marketplace of ideas.” The concept was that if people openly and honestly discussed questions, the truth would win out because it would be the only answer that satisfied reality. But for this competition of ideas to reach the desired goal, there are two obvious prerequisites: First, as the English poet and philosopher John Milton stated, there must be a “free, transparent public discourse.” Second, the participants in the discourse have to agree that there is such a thing as truth.

Unfortunately, today we fail on both counts. Increasingly, manipulators are either making certain ideas unacceptable by fiat at the outset, or are redefining phrases to make the accurate expression of certain ideas impossible. For example, you can’t have a serious discourse about “equality” if the person you are talking with has redefined the term as a racist “code word.” In either case, the goal is to control and regulate discourse so that only certain ideas can be expressed – and no dissent is allowed.

Likewise, if the manipulators are going to control the discourse, they can’t allow themselves to be embarrassed when one of their ideas bumps into reality. So they simultaneously give everyone the power to define what is real for themselves in the form of a personal reality that can’t be questioned.

Consequently, when all is said and done, the once-vaunted marketplace of ideas has become little more than a philosophical smorgasbord from which one can pick and choose any concept that strikes their fancy:

“Yes waiter, I would like the Existentialist Blue Plate Special with a small order of Religiosity on the side. Oh but hold the Libertarianism, it gives me gas…”

And if you happen to believe two contradictory ideas, no problem. What’s a little cognitive dissonance between friends?

Now if life is going along pretty well, you might be able to get by with this sort of intellectual dishonesty. But if you are suffering from a chronic disease, or are caring for someone who is, you don’t have time for such mind games. If, as in my case, your wife is dying, that is a hard, uncompromising reality that demands attention. And it matters not a whit whether you agree with the diagnosis. CAG counts trump opinions. It is an example of what I call True truth and a firm grasp of this truth is one of the things that you need in order to deal with the situation I outlined above.

The second thing you need is confidence that you aren’t in this struggle alone, but this conversation needs to be bigger than just how to obtain effective protection from the, “…slings and arrows of outrageous fortune.” Rather we need to see all our actions in the world as part of a process in which we are just one part. (For extra credit this week, contemplate the phrase that I didn’t include in that last sentence. I didn’t say, “small part.”) But if I am just a part, who is orchestrating the whole? I would assert it is The One whose very being defines the fundamentally True truth that is the basis for the reality in which we live. Here are three aspects of the support that we can expect:

First, God has redeemed my past. Unlike the opinion commonly expressed by the mob, I don’t have to be the result of an immaculate conception. In fact, God has a habit of using people with “a past,” as folks used to say. While the perfect, sinless people that are so common today would be tearing down their statues, God says, “That’s okay. We can fix that flaw and We’ll turn it into something beautiful.” Note that in the end, the resulting life is not as it was before – it’s better.

Second, to complete the work of redemption, God is walking with me in the present. And yes, it often isn’t pretty, but we can be confident that it will all work out because, unlike me, God is totally committed to the perfect end result. Consequently, whatever you or your loved one must endure in order to do what is right, it will move you towards the ultimate goal.

Third, God is going before me into the future. It may seem unfortunate, but the simple fact is that you and I can’t see even one second into the future with absolute certainty. As a result, we are often taken by surprise by what happens next. However, for God, all of human history is like a vast tableau that He organizes and structures for our benefit. However, this Divine Work isn’t like a movie I saw once where Greek gods were playing chess with people’s lives. God is not sitting uninvolved is some far-off heaven. Remember, He is “Emmanuel,” God with us.

So, in the end, we see that while the proper course of action may not be easy, it is really very, very simple. Truth matters. Right matters. So tell the truth and do the right thing.

In Christ, Amen ☩

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A prayer for when you are feeling confused and hopeless…

“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 certainty of who You are. But today I want to bless You especially for not being silent in the world today. Thank you for going before me, walking with me, and protecting me. Amen”

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Letting Go…

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.

Resuming where we left off last week…

A few weeks ago, Janet and I made the final arrangements to have her admitted to home hospice. It’s clear that Janet has been talking to Frannie because she now understands what “hospice” really means: Mom is dying soon. The three of us spent a lot of time last night hugging and crying. This is a very hard time and “letting go” is becoming very real.

One of the things that I have learned over the years is that grieving is a complicated business. In 1969 a woman named Elisabeth Kübler-Ross came up with what she called the 5 stages of grief (denial, anger, bargaining, depression and acceptance). While her work has come under some criticism in more recent years, it doesn’t take a genius to see that degenerative conditions like HD, complicate things by requiring you to basically start the process over every morning, because every morning there is a little more of your loved one “missing”.

For me, grief has become an open sore that is constantly getting picked raw. Thus even on good days, I have noticed that I tend to have a very “thin skin”. It’s as though all my capacity to deal with the world is used up by the normal flow of the day. Consequently, even small problems can leave my emotional reserves “overdrawn” and throw me into a tailspin. I imagine that this is what the next few months are going to be like, until Janet actually passes – and probably afterwards too.

But that’s not the whole story. The fact is, no story is over until God has His say. I just finished a piece that I wrote for the church newsletter that consisted of some thoughts brought up by the classic Eagles song, Hotel California. Besides ending with The Greatest Guitar Duet in Rock-and-Roll History, its words tell a story that haunted me for a long time. The thing was, I lived in California for several years, but they weren’t good years. In fact, they pretty much stunk. During my time in SoCal, I made a lot of mistakes and went through a lot of changes that left me feeling empty inside. I got to thinking that since California was the problem, all I had to do was get back to who I was before I moved to California. Then things would be good again. Then my life would be back on track – as the song said:

“…I had to find a passage back to the place I was before…”

Unfortunately there was one small problem with that approach:

“…’Relax’ said the night man, We are programmed to receive.
You can check out any time you like, But you can never leave!”

In other words, the hope of getting back to who I was when I left the hills of southern Missouri, was ultimately a false one. No matter how hard I tried, I could never leave behind me California and all the pain it represented. Eventually, though, I learned that the line I took as hopeless, really wasn’t. The point I was missing was that while its true that every experience permanently changes who I am (which is actually the point of the song), it’s also true that God uses the “stuff” I go through to help form me into what He wants me to be – and that includes something as tragic as the looming death of my beautiful Janet.

With that realization, I began to grasp the utter pointlessness of looking at past mistakes and life events from the standpoint of, “If only…”. The hard truth is that there is absolutely nothing that I can do to turn back the clock and undo my mistakes. As lawyers like to say, you can’t unring a bell, and as I know from my own experience, you can’t unmake mistakes. But just because I can’t do it, that doesn’t mean that it can’t be done. As a believer, all of those failures in my past are opportunities for God to step in with His redemption and grace. There is nothing that is so broken that God can’t fix it. Divorces, deaths, relationships, you name it – God can, and does, redeem it all.

In Latin, there is a motto that I have come to love: semper prorsum. It literally means: “always forward”.

I started out this blog a couple months ago by talking about a wedding in our family. As we now come to the end of the first phase of this blog – the “historical” part of this story, I can see a parallel between marrying someone and losing them to illness – which if you think about it shouldn’t be too surprising.

For example, we tend to think about both things in terms of events – weddings and funerals – when in reality they are processes that can start months or even years before the culminating event. For example, you don’t become united with a spouse all at once, rather you start drawing together the moment you first meet. In the case of Janet and I, that first meeting took place in a Friendly’s restaurant around the corner from Symphony Hall in Boston. Likewise, when you are losing a spouse or loved one to a terminal illness, the letting go doesn’t occur at the graveside. For us it started when we got the diagnosis of Huntington’s Disease sitting in Dr Cotugno’s office in Washington PA.

Another similarity is that, for both of these processes, the fact of what is going to ultimately happen starts as an intellectual concept that seems at first rather unreal despite our recognition that it will occur – someday. Then somewhere along the way, something happens that turns the ephemeral someday into the reality of today. For me, our wedding became “real” the first time I looked at Janet as we were doing something mundane like washing the dishes and I said to myself, “Yeah, I’m going to spend the rest of my life with that beautiful woman. I done good.” For our family, the point of grasping the full import of our impending loss came when we admitted Janet into home hospice and I said to myself, “Oh God, I’m not going to spend the rest of my life with this beautiful woman.”

One of the things that grief can do is turn your head around and keep you pointlessly fixated on the past. If only we had argued less, if only I had taken her dancing more, if only I had spent less time working away from home.

If only…

If only…

If only…

But you don’t find hope dwelling in the past because hope is about the future. It wasn’t so long ago that I couldn’t visualize tomorrow at all. When I tried to think about the future, all I saw was an endless string of dull, gray todays. Now I can sort of see to Christmas, which is good because we hear at Christmas one of God’s most beautiful names: Emmanuel – “God With Us”. This name assures us that God doesn’t stand back and view us in a detached way from some far-off heaven. Rather, God is committed to walking with His people as they walk through whatever dark valley that they must traverse.

Where can I go from your Spirit?
Where can I flee from your presence?
If I ascend to heaven, You are there;
If I make my bed in Sheol*, behold, You are there.

If I take the wings of the dawn,
If I dwell in the remotest part of the sea,
Even there Your hand will led me,
And Your right hand will lay hold of me.

If I say, “Surely the darkness will overwhelm me,
And the light around me will be night,”
Even the darkness is not dark to you,
And the night is as bright as day.

* ”…make my bed in Sheol…” is a euphemism for dying.
Hence, the line means, “Even if I am dead, behold, You are there.”

In Christ, Amen ☩

A prayer for when you are viewing life in the rear-view mirror…

“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 timeless love. But today I want to bless you especially for being by my side throughout the troubles of life. Please give me the faith to not reflexively obsess about past sins that I have confessed and You have long-since forgotten. Teach me to always “face front” as that is the only way that I can see where you are taking me. Amen”