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So What’s There to Lose?

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.

This past two weeks, the worldwide Coronavirus panic, has impacted the Porter household in a couple ways. First, my company has been determined to be in a critical industry, so my job is safe. However, it was also determined that I don’t have to be onsite to do my work, so I am working out of the house for the foreseeable future. This week is the first full week that I am home.

The second impact has been to answer an unfortunate question. I have been trying, for some time, to sort out exactly what relationship still exists between Janet and I because it doesn’t take a genius to realize that things are clearly not as they were on our wedding day. As I have shared here before, I have been reading and thinking a lot about what psychologists call ambiguous loss, and I have gotten as far realizing that I am stuck somewhere between being her “husband” and her “male nurse” – two positions with very dissimilar job descriptions. So I have begun trying to understand what I have already lost, and what else the disease will likely consume as it continues to progress.

The first time I really began to understand what HD meant in concrete terms was shortly before we moved from Ohio to Texas and our son came for a visit. He and I were out together one day doing some shopping and I took the opportunity to try to explain to him some of the troubling behaviors that I had noticed were developing in his mother. So I cautiously explained all the things that I had observed, being very careful to include only situations that I could easily justify to him. I was so careful because I was sure that his reaction would be, “Oh no Dad, you must be wrong! Not Mom!”

Instead, what I got was a shrug and, “Yeah, but Ma has always been like that…”

As we continued talking, it became clear that my college-age son had a much better insight into what was going on than I did. He explained to me that when I was away for work she would “make nice” while I was home on the weekends, only to let loose again when I went back to work. It was clear that my son’s memories went back a lot further than her diagnosis.

Eventually I had the opportunity to listen to webinars on the HDSA website that talked about the progression of the disease before the patient is diagnosed. One of the things that researchers had begun recognizing was that while the physical symptoms were typically what drove the patient to go see a doctor, the emotional and cognitive problems could start much earlier, often decades earlier.

The most immediate result of this information was the realization that it was possible – indeed likely – that our two children had never known their mother when she was not exhibiting the effects of HD. That was shocking enough, but as a result of my recent inquiries into what I had lost, I came to suspect that the same might be true for me as well. Perhaps, on our wedding day, Huntington’s Disease was already in the picture, already playing a role.

Goodness knows, in hindsight, there were warning signs aplenty. A friend that has known Janet for years once told me, for as long as she has known Janet there were times when she could be “difficult” due to her temper. Then there was the fact that Janet never liked holding hands while we walked. She said that it threw her “off-balance.” I always took that explanation to mean that she just didn’t like holding hands, but now I wondering whether HD had already started degrading her balance, just a bit.

So if I circle back to my original question, “What have I lost?” And I discover that the loss might not be so ambiguous after all. One of the things that I have clearly lost was a fairy-tale past where everything was “OK” before the disease. I realize I made a lot of excuses for her over the years, such as the time when I explained to the cop living next door to us in Ohio that I had a black eye because I walked into a door in the night. He just stared at me with a look on his face that said, “Do you have any idea how many times I have been told that crap?” But all he said was, “Are you sure that’s what happened?”

Looking back, it’s very likely that the Janet I miss, the “real” Janet that I have talked about so often, never really existed at all except in my hopes and dreams. The real Janet was the person that she would have been had she been able to free herself from the baggage of her father’s abuse. That was the battle I was prepared for and was more than willing to fight. Unfortunately, that was not the battle I got.

Just as she inherited the HD gene from her dad, she also “inherited” the anger. However, that inheritance did not come about through the action a DNA molecule, or even a probate court. Rather, it was passed on through an endless series of assaults, such as being slapped across the face multiple times because she didn’t know what page of the missal a particular prayer was on, or being verbally derided for not knowing what country produced cinnamon. And if that load wasn’t enough, when the HD began to manifest itself, she got new anger of her own. Anger about a world out of control, anger about failed expectations and unfulfilled promises. Every day now, anger piles on top of anger to create an unstable emotional tower that is doomed to fail when it can no longer support its own weight.

So where exactly does that leave me? What I’ve lost is a fairy tale. What I’ve gained is a large dose of castor oil-flavored reality. The “smart money” would probably tell me to cut my losses and get out before it gets worse. The only problem with that advice is that I have never been particularly “smart” in that way. In point of fact, I still believe in such quaint and corny ideas as integrity and keeping your promises – even when the only thing left of the original relationship is The Promise.

Consequently, I will for now let “husband” fall to the side and find fulfillment in my new position as “male nurse”. So should I consider that move a demotion? No, not really. You see my core desire has always been to give Janet what she needs, and she doesn’t really need a husband right now, what she needs is a really good nurse.

In Christ, Amen ☩

A prayer for when you are a little slow…

“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 always knowing and providing what the cosmos needs. But today I want to bless you especially for truly understanding what is needed in my world. There are so many times that it feels like I am slow to understand hard truths, but then I see that it’s just that You made me idealistic and hopeful. Thank you for making me who I am, and using me just that way. Amen”

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A New Normal

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.

When Janet was admitted to home hospice, part of the documentation that we received was a brochure that described the stages of dying. One of the big markers that the booklet mentioned was that the person begins to disengage from “normal life”. It then goes on to describe them sleeping more and more, and being involved in this life less and less. This seems to be what Janet is beginning to experience. She is sleeping in her wheelchair large parts of the day and at night prefers to sit alone in the dark. No TV, no lights, nothing…

A couple weeks ago, I wrote a post about the circumstances under which you could find yourself serving as an advocate for another person. The situation where I spent the most time was where you have the position thrust upon you. For example, when I married Janet the possibility of a disease as devastating as HD never crossed my mind, yet 34 years later, here I am.

Unfortunately my experience isn’t that unique, the online support forums are filled with stories of children caring for parents, parents caring for children, and folks of all ages caring for siblings and spouses. Rarely are these “amateur” caregivers consulted or asked to help, but out of a sense of love, or loyalty, or duty, they step forward anyway to fill the breach – often without fully understanding what they are getting themselves into.

By the way, just to be clear, I have nothing but the utmost respect for people who take on these challenges. On the support forums I regularly read stories of amazing heroism and boundless heart that, to be frank, leaves me simultaneously in awe of what they are doing and a bit ashamed of my own kvetching.

But I also read a lot of posts from people who are in way over their heads, and who feel like they are drowning. Now there is a feeling I can relate to! In fact at one point in my life I felt like I was being constantly “waterboarded” emotionally. I never quite drowned, but I never quite got a full breath of air either. Now, though, I am clearly out of the “drowning” category and, while I still have a long way to go, I feel like I’m at least on my way to “heroic”. So what made the difference for me?

Looking back, the real turning point came when I realized that I had bought wholesale into the myth of a static life. Or to put it another way, I believed that there really was such a thing as “normal life” where one day followed the last and didn’t vary very much. Oh, there might be high spots like having a child, or going on vacation, but soon things would smooth out again and be “normal”. In the same way, I might encounter tragedies like divorce or losing a job, but again, “normal” always seemed to reassert itself.

Of course when I describe it in this way, it’s easy to see the mythic nature of a belief in the “normal”. For example, I can easily recall experiences that left me fundamentally changed – for good or bad. So why did I want to believe so badly is a life that was fixed and static? I think it was the same reason that people believed, for centuries, in a flat earth that was the center of a static universe where the stars were angels sitting on crystal spheres that danced around our heads producing a celestial music – it was simple.

You see, if everything is fixed and static then every day will be like today and who I am and what I believe that is adequate for today will be adequate for forever because nothing ever changes. But what if you don’t believe, or have been told, that you aren’t even adequate to meet the challenges of today? Well it still works because you at least have a fixed target in the form of lists of certain, unchanging rules to follow. In short, fixed and static is easy because it doesn’t require much thinking. All you have to do is keep your mouth shut and do what the government and/or church tells you to do, and you’re golden.

The only problem, of course, is that all this apparent simplicity isn’t real. Science figured out centuries ago that the cosmos in which we live is an active, dynamic place where the only real constant is that there are no constants. If we are honest, we have to admit that even God sometimes isn’t that comforting because He’s uncontrollable, unpredictable and is often up to things that we don’t understand or particularly like. To see what I mean, read the book of Jonah sometime.

Even at a personal level, the dynamic nature of the world in which we live brings with it some rather messy implications. Assuming for instance, that I am is adequate to meet the challenges of today, I may be found wanting when tomorrow arrives because the one thing I can be certain of is that tomorrow will be different from today, and often in unpredictable ways. Moreover, if I am not making the grade today, tomorrow will likely be even worse because the rules that people create are constantly becoming more complex and arbitrary, almost guaranteeing that I will break one.

No wonder my head went into a tailspin when a doctor told me not only that Janet was going to die, and what she was going to go through before the end came. The first casualty of the Huntington’s Disease was my sense of “normal”, and the really hard part was that HD didn’t slowly wean me away from normality, it just cut me off cold-turkey. No more normal, not now, maybe not ever.

It’s not a pretty picture, but it is the environment in which the “heroic” caregivers thrive. I’m learning that the key is to be as fluid and dynamic as the situation that I am in. In embracing this dynamism, I have a great role model: God. In one of the most sublime paradoxes of scripture, God is both lauded for stability and steadfastness, and characterized as wind, water or flame – all dynamic ever-changing forces.

What I’m talking about here has been called living “in the moment”. However, when we hear most people talk about living in the moment, it’s often a watered-down version of the concept that accepts the past and a future, but with the goal of simply not being unduly influenced by either.

What I’m learning that I need to do is to live in a “now” that exists totally divorced from both the past and the future: The past, because it is the home of disappointment and regret. We have talked before about how damaging it is to live in a world of “If only…”. But the past is also where we find what is “normal”, “usual” or “typical” – all of which are things that, given my current circumstance, only exist to taunt me.

Likewise, the future is where I find fear and worry based on and driven by, “What if…”. If these concerns can be addressed and managed, like we talked about last week, thinking about the future is a good thing. Unfortunately, in my experience, healthy planning can all too easily turn into obsessing about the uncontrollable.

So living in the moment can be messy too. But we are not alone in our quest for the divine now, as in all situations in life, there is Emanuel: God with us – and that is a source of great hope!

So, while this resolution might not exactly be a “happy ending”, it is where I am right now, and now, and now, and now, and…

In Christ, Amen ☩

A prayer for when you have lost touch with what is going on now…

“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 limitless expanse of eternity that will be our eventual home. But today I want to bless you especially for that infinitesimal slice of eternity called “right now”. Thank you for providing for my needs right now. Thank you for the patience, strength and wisdom that I require right now. Lord, show me how to reach out to those who are mired in worry and regret from the past, or despondent over worries about the future, and proclaim to them your grace, your peace, and your now. Amen”