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”
One Reply to “So What’s There to Lose?”
No it’s not a demotion, but a new and different chapter in your life story. A very difficult and scarey chapter yes, but a new chapter that is currently the story of your life. And hopefully later in life you will be able to look back on this time and see how it helped you grow and learn how to cope in life. You are also setting an amazing example for your kids of what true, unconditional love looks like! Put your emotional suit of armor on to help protect you from her HD induced anger and abuse. And know that she has no way out of her emotional state either if by chance she has clearer moments and realizes what she does to those around her. In my son’s earlier stage of HD he had a lot of anger and depression. But he was a teenager so it was difficult to know if it was HD, depression or teenage rebellion. All of those would need very different responses!
I told him once after an angry incident and we had both gotten to a better place, that sometimes his anger scared me. His response was, “sometimes it scares me too.” This was spoken by someone who doesn’t talk a lot, but more importantly by someone who can’t ever verbally express his feelings to me. This was a huge moment that helped me realize how out of his control that anger was. Fortunately right now that is under control with medication. But of course I have concerns that as the disease progresses, it will return and we will be living a life similar to yours.
In my own humble opinion, I think you may “hang on to a fairy tale” because it gave you hope. And hope is what we desperately cling to when we don’t know how else to move forward. When Janet finally passes, you will be able to say you loved her and gave her all you could until the end. Hopefully there will be no regrets and “I should haves” . And God will say to you, “Well done, good and faithful servant!”