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.

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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 ☩

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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”

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”