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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.”

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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.”

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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.”

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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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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.”

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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.”