Posted on

Living your purpose, on purpose

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

We are finally getting settled in.

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

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

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

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

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

❦ ❦ ❦ ❦ ❦ ❦

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

❦ ❦ ❦ ❦ ❦ ❦

A prayer for when you are feeling purposeless…

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

Posted on

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.

❦ ❦ ❦ ❦ ❦ ❦

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 ☩

❦ ❦ ❦ ❦ ❦ ❦

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.”

Posted on

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.

❦ ❦ ❦ ❦ ❦ ❦

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 ☩

❦ ❦ ❦ ❦ ❦ ❦

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.”

Posted on

Life Interrupted

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

If you would like to read our story from the beginning, you can start here: How We Got Here…

This Monday we weighed Janet and she was down to 91 lbs. This week Frannie saw Janet as she was getting a bath and it scared her – again. Frannie and I take walks every evening and lately the topic of conversation is always the same: What are we going to do after Mom dies?

I guess it’s pretty normal to look at a coming change and wonder what it’s going to mean. Of course, most talk of that sort is really just speculation because, in truth, we have no idea what the impact is going to be.

My company has me working at home, at least until sometime in September. So for a change this week, instead of working in my office, I’ve been working downstairs sitting with Janet. On the one hand, having me in the same room seems to be calming. But on the other hand it means that I can watch her and she feels a bit resistant to the oversight.

Thursday, I was working and she asked me to go upstairs to work. When I asked her why, she said: “The clicking of the mouse is too loud.”

“The clicking of the mouse is too loud…” I said slowly. I was skeptical, but figured why not? So I gathered my things and went up to my office on the 2nd floor.

However, no sooner had I sat down at my desk than the alarm that we have on her chair to let us know when she is trying to get up went off. Running to the living room, I saw her quickly sitting back down.

“I was trying to reach the TV remote,” she explained.

“Janet, the remote is right next to you on your tray.”

“Oh?” she said, feigning surprise.

“Yeah. You know what it looks like to me?” I asked. “It looks to me like you wanted me upstairs so you could stand up and take a stroll without me scolding you. That’s about right, isn’t it?”

Realizing that she was busted, she nodded. “Yep…”

We talked about it a bit more, and then I moved my work back to the living room. I guess the mouse is much quieter now.

Then Friday, we had a visitor. Ray, the pastor of the church that Frannie and I have been attending during this shutdown, came by for conversation and prayer. The visit was also an opportunity for Ray to meet Janet and get to know her a bit. In addition, he brought communion – which is something that Janet has sorely missed. For Janet, communion is about remembering, but it is also a way of welcoming and receiving Jesus, again and again.

❦   ❦   ❦   ❦   ❦   ❦

It occurred to me this week that there are basically two kinds of people in the world: Those for whom reality is an interruption keeping them from the more important things in life, and those for whom the interruptions are life.

As a caregiver, I fall often into living out the first option, when I know that the second one is actually true. The problem is that there is a curious idea abroad in the world today that encourages us to establish goals for ourselves and then judge the quality of our life based on our perceived progress towards meeting those goals.

Unfortunately, this approach to life has some problems. For example, I (like many people) began choosing my future at an insanely young age when someone first asked me what I wanted to be when I “grew up.” Now, 66 years into the process of growing up, if I were to measure my life against those pre-pubescent goals, I would feel frustrated – I am clearly not an astronaut. But even if I shifted my focus to include more adult goals, the frustration would remain.

For instance, my intention was to have a home in one place and not move my family as much as my folks, brother and I moved while I was growing up. But those intentions were frustrated to the point that our kids don’t really feel like they have a “hometown.”

My goal professionally was to have a career with a good company and retire after many years of faithful service with the proverbial gold watch. That goal was frustrated by companies that labored under the burden of poor management – and my pathological inability to keep my mouth shut when I see something wrong. (I know, you would never have guessed that about me, right?)

And in terms of relationships, I had hopes for a long and happy marriage to Janet, and dreams of us spending our “golden years” traveling around the country in a motorhome visiting grand-kids – but these are the biggest frustrations of all.

If I were to focus solely on those frustrations I would, like the small-time boxer Terry Malloy from the play (and movie) On The Waterfront, cry out:

“I coulda had class. I coulda been a contender. I coulda been somebody…”

Viewed from that perspective, all I have to show for 66 years on this earth are regrets.

Of course, there are those who adhere to the cultural myth about the “self-made” man or woman who, through strength and perseverance, overcome all obstacles. But as attractive as it might seem to say with the Victorian poet William Ernest Henley:

I am the master of my fate,
I am the captain of my soul.

… the truth is that soul captains rarely meet happy ends. For example, Henley himself died in pain from tuberculosis at the age of 54 after an amputation caused by the disease, and in the end his over-the-top poem Invictus (for which he is famous) didn’t change his life in the slightest. I wonder if, in the end, the poem’s hubris provided him with any real comfort?

But there is still the other option – that these “interruptions” and “side-tracks” are themselves life – maybe not one we chose, but one that was needful. From that perspective I can see beyond the roadblocks to recognize that while some of the big things didn’t work out as I hoped, many others that I didn’t see coming were better than I ever imagined.

For example, dreams of having children together are wonderful – even better is the opportunity to actually help bring them into the world, as I did when I cut the umbilical cord for my son Michael. Or to share the joy of watching our daughter Frannie grow and exceed the expectations of the “professionals” who forecast for her a bleak future.

“Ah. But,” you might ask, “surely you don’t mean to suggest that there is anything positive in Janet’s current condition are you?”

Actually there is. Janet has been a teacher her whole life. This illness will have been her biggest lesson to the world: How to face a future that in the short-term is clouded and uncertain, and how to do so with grace, dignity and strength. She is a demonstration of faith in the face of absolute certainty of “failure.” She will die, but it will be a death that is her entry into a new life filled with joy and health. Over the years she has many times expressed that hope, and that faith.

And for me? Well, many people go through life wondering about and obsessing over whether they have ever “made a difference” in the world. When someday on my deathbed, I consider my life while the light fades, I will be looking not at a seamless darkness born of frustrations and failures, but rather a starry night shining brightly with a myriad of points of love and grace. Not exactly what I had planned, but truly it is all good.

In Christ, Amen ☩

❦   ❦   ❦   ❦   ❦   ❦

A prayer for when you are facing 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 Your eternal presence. But today I want to bless you especially for offering us an invitation to enter into your joy. Thank you for redeeming not just my future, but my past as well. Amen”

Posted on

Semper Prorsum

One of the things that I have recognized the need for is a place to expand the scope of what the blog talks about by adding supplementary posts covering other material that is related to the weekly updates, but which don’t fit well into those conversations.
This is one of those additions.

So we come to the end of the Year of Our Lord 2019 — which is also the end (though it doesn’t seem possible) of the second decade of the 21st century. As has become customary for this time of year, I want to take a few moments to talk about the changes that the last year has wrought in my life.

2019

The end of last year and the end of this one could not be more different. A year ago I was, to be frank, foundering. I felt cold, cynical and what writing I did dripped with dark sarcasm. Janet was constantly angry, confrontational and critical, and there didn’t seem to be any hope and no future.

When someone asked me what I was going to do after Janet died, I told them that I had absolutely no idea because I hated everything about the situation that I was in. I told someone once that with my luck I would die only to discover that the Catholics were right about purgatory and I still had 15,000 years more to go before I got to Heaven.

On a personal level, I likewise felt very much adrift. On the one hand, I dreaded the idea of being alone, but on the other, I felt beat up and wondered who would ever want to be with me. I even wondered whether it was even fair for me to consider “inflicting” myself on someone else. I felt like damaged goods: a dented, expired can of Spam — which is to say something people aren’t too excited to have when it’s new, and when it’s not… Yeah, you get the idea.

While work was still somewhat fulfilling, even it had starting to drag on me. I had always assumed that retirement was for other guys. I had even told people that I would stop programming and retire when, “…they pried the mouse out of my cold, dead fingers.” Now I just didn’t know, but I also didn’t know what else there was for me to do.

For most of the year, one day followed another, endlessly gray and undifferentiated.

But I guess at some point I was finally ready to hear what God had to say, because things began to change. Bit by bit, through a friend from church, prayer and of course my sister, I began to see a light at the end of the tunnel, that I was pretty sure wasn’t the headlight of an oncoming train. As I travelled on, the light slowly got bigger and bigger, and I could see that the track I was following led out of the tunnel and wound around a bend. While I couldn’t see where the track led, that didn’t seem to matter anymore — it led somewhere, and that was all that was important.

What really made the difference, though, was you folks on the support forums. I initially got on the forums as a way of letting people know about the blog. I started out with just the Huntington’s and Juvenile Huntington’s groups but quickly branched out to others. The important thing was that I realized that whether the group was for HD, JHD, PD, Alzheimer’s, mental illness or dementia, caregivers all had similar challenges.

By reading your stories I got a sense of perspective on my own troubles. I saw that Janet could have been much worse, and I needed to spend more time being grateful and less time complaining. Moreover, I realized that I had more to contribute than just writing the blog. Things I had learned the hard way could help other people, so I began participating more. After experiencing the results from supporting and praying for people as they work their way through their pain and trials, I saw my load got a little lighter too.

Which reminds me, one of the things that that has amazed me is that since this blog went live 7 weeks ago, there have been over 2500 page views, by 1290 visitors, from 35 different countries. I am in absolute awe. Thank you all so much! I wish I could hug all 1290 one of you!

2020

Well, that brings us almost up to date. Next Sunday will be the last time where I will speak in the past tense. After that post, the blog will be about what happened that previous week.

So what will we talk about this new year? Beyond a few obvious things like, at some point, Janet will die in 2020, I really don’t know, but I promise you this, we will always be moving forward. Which, by the way, is what the title of this post means: “always forward”. When you are a warrior for God, one of the things to remember is that He doesn’t back up, or give ground. Ever.

In closing, I love you all, and thank you for your prayers and blessings.

In Christ, Amen ☩

One last prayer for 2019…

“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 how you empower us to reach out in love to others. But today I especially want to thank you for this year. Although there have been hard times, I can nevertheless see your hand guiding and directing me. Teach me to love you more deeply, trust you more completely, and follow you more speedily. Amen”