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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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Puppy Dogs and Unicorns

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.

The big news this week is that I got a call from Houston Hospice that Janet is stronger and so no longer qualifies for their services! While that is good news, there appears to be a little confusion. I was called by Jan’s hospice nurse Friday morning and was told at that time that Jan no longer qualified. Then Friday afternoon the same nurse came by the house and not only failed to mention her status change (which the nurse told me on the phone she would) but went on to tell Janet that she was going to get evaluated for PT under hospice next week – what?

Beyond that, there is a new symptom that I don’t think I have mentioned. She has suddenly started needing to know exactly where I am every minute. For instance, if I go to get her something at the store she will call me once while I’m on my way, at least once while I am there, and again as I’m on my way home. Not sure what that is about, but it’s not worth stressing over.

I remember the very first time I saw Janet. It was at a restaurant called “Friendly’s” that was across from Symphony Hall in Boston. As I explained previously, we met through a newspaper ad that I ran, so I didn’t know what she looked like. Unfortunately, I have to admit that the first thing that ran through my mind when I saw her was, “Man, she’s short.” But she packed a lot into a small package. From Friendly’s, we walked to a Thai restaurant that was around the corner, to have dinner. There I learned that she had just recently left teaching due to layoffs. She had also traveled internationally, visiting England, Scotland, and France – and liked trying new things like Thai food. Before saying goodnight, I remember thinking, “Yeah, this one is special. I’ll be calling this one back. Definitely.”

The first thing I need to say this week, is that the title above is a bit of a red herring as this post has absolutely nothing to do with either puppy dogs or unicorns. Rather, the title is a bit of dark humor that I will explain later. In fact, one of the things that I enjoy most about writing is being able to draw connections between seemingly disparate things, and in so doing, expose larger patterns in the world. However, making the connections that I have in mind this week won’t require much imagination at all.

Lately there has been a lot of conversation about being a “warrior” – I even wrote about it myself a few weeks ago. The problem is that there are two sides to everything, and being a warrior is no exception. There are the strong, heroic images of warriors in armor battered and bruised, but victorious! We love seeing those kinds of pictures where we can imagine ourselves or a loved one in the heroic role.

But another side also exists that is not so pleasant to consider. In addition to the prize that goes to the victor, there is also the price that the warrior has to pay in order to gain the victory. In the real world, all-out battle can sometimes extract a heavy toll in the form of a physical injury or disability, while at other times the injury is emotional or psychological in nature.

Yes, being an HD caregiver can be dangerous.

“Wait, what? Caregivers? I thought you were
talking about military veterans!”

What I’m talking about is a condition called Post-Traumatic Stress Disorder, or PTSD, and to be honest, up until a few years ago PTSD was for the most part only considered in terms of either the military or first-responders like the police, firefighters and EMTs. However, recent research is showing that anyone can feel the effects of PTSD, from little children to grandparents, and one of the top sources of PTSD in the civilian population is being a caregiver for someone with a long-term debilitating illness like HD.

Unfortunately, this condition is something I know about. I was diagnosed with it about 4 years ago as a result of my military service and something else that I will talk about later. In terms of the military, I was in the United State Air Force and my last duty assignment was in the Strategic Air Command, or SAC, where I was Radio Maintenance, or RM, flying on what was called the Airborne Command Post. One of our EC135s was in the air 24/7/365 for more than 5 decades. At the same time, we had crews standing by on ground alert, but we all had the same mission: Wait for WWIII to start, and if it did, fight it regardless of cost. To be clear, I in no way regret my service. It was the dedication of military men and women on both sides of the “Iron Curtain” that kept WWIII from ever happening. Since you are here reading this, it’s clear that our mission was a success. But for me personally, there was a cost: an inability to sleep, a trashed marriage, depression, emotional and social isolation, accentuated startle response, and flashbacks when fire alarms went off unexpectedly.

The thing that saved me was when God brought Janet into my life. She helped me see beyond the old pain and start healing by making it safe for me. She was also one of the few people I have met who fully understood what I was doing in SAC. She used to call me her hero for helping to protect her. Unfortunately, Janet is now dying of HD, and the stress is slowly bringing back the old symptoms – and a few new ones to boot. Recently, a fellow wrote on one of the HD support forums about the changes that his wife had started going through. I told him that, “…being a caregiver feels at times like you are literally living in a war zone.” Some days it takes an act of God for me to get to work and stay connected to the world around me.

But what is PTSD actually and what are the major symptoms? To answer that questions, you remember seeing this list online anywhere? This is PTSD symptoms in a nutshell.

For a more formal evaluation, I have also found an excellent website by the Anxiety and Depression Association of America, or the ADAA. This link is to the section specifically on PTSD. In addition to the quality of information, the other thing I like about this site is that it (like this blog) has a menu that allows you to select the language in which to display the contents, from Afrikaans to Zulu.

To help you gain insight into either your own condition or the condition of a loved one, there is an online evaluation you can take. Unlike other online tests I have seen, the result of filling out the form isn’t an answer, but rather an opportunity to print out your answers with a recommendation to see a doctor and share the results. In other words, you are pushed to get evaluated by a doctor, which is the responsible thing to do.

Unfortunately, that simple step can be the hardest. A friend from the UK recently told me that the waiting list for obtaining psychiatric therapy with the NHS was 2 years and even when you do get to see a doctor, according to my friend, “…they just want you to pop pills, it’s cheaper.” However, while pills may help you through a crisis, they are not a long-term solution, and what we need is a solution not for the next few hours or even the next month or so. We need a solution for the rest of our lives because the trauma that causes our PTSD doesn’t get better or go away. Like all our experiences, the trauma becomes part of who we are.

So if we can’t depend on “the system” to take care of us and our PTSD, what can we do? The option we have left is self-care, which obviously starts with awareness. Of all the posts I have read on the HD, Parkinson’s, and Alzheimer’s support groups I have yet to see even one that talks about PTSD and identifies it correctly. As caregivers we need to educate ourselves on this condition and be sharing with one another what we have learned. We need to be talking about it and sharing our stories of success and failure. We need to own what is going on inside our heads because if we don’t, it will own us.

The other thing we need to do is set reasonable expectations. There will be days when we are doing well, and there will be days when the old dragon will unexpectedly awaken, and we will have to respond – like a couple months ago when my sister was getting ready to welcome her 18th grandbaby, a boy. The other source of trauma that I didn’t mention earlier was that my second wife and I lost our first child, a boy, when he was three days old. In short, when I heard that my niece had gone into labor, my mind went into a tailspin and all I could hear was the beeping of the fetal monitor and the doctor saying over and over again, “The baby’s in trouble… heart rate is dropping… heart rate is dropping… heart rate is dropping…”

Physically, I was sitting at my desk at work, but mentally and emotionally I was in that delivery room 40 years ago. I was totally blindsided by something that I thought I had resolved decades ago. But the fact of the matter is that no one can ever say I used to have PTSD. The dragon may be asleep or quiet for a time, but it is never gone. No matter how “resolved” you think things are, there will be times when it will stretch out its serpentine neck and try to push you to the limit. We need to always be ready to counter those attacks using the same weapons of grace and faith that got us through the original trauma – especially if you don’t think it was grace that got you through originally.

So for me, reading the forums and answering questions is hard, and writing this blog can be very hard – but I soldier on because I know that each obstacle surmounted strengthens my faith, makes my vision clearer, and enlarges my heart. In fact, that is where the title of this post came from. The other day I was talking with someone about this post and I cried out at one point, “God, why can’t I just once write about puppy dogs and unicorns?” Giving this post that title is basically my military sense of humor kicking in to say to PTSD: you may always be part of me, but you are not me, screw you. (I’m no John Howard, but it works for me…)

In Christ, Amen ☩

A prayer for when your past comes calling unbidden…

“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 ways that you make all things new. But today I want to bless you especially for this thorn in my flesh. Thank you for using my past to make me stronger. Sometimes it hurts so much that I would rather hide away, but you have shown me again and again that when I am at my weakest, you are at your strongest. Thank you for not letting my life be ruled by random chance. Thank you for giving me the experience, skill and wisdom that will make me useful to you. Show me how to reach out to others despite my wounds. Amen”

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Who me, an Advocate?

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.

Last Sunday, I spent a chunk of the afternoon on messenger talking with my sister — nothing unusual there. What we talked about was the post that went live on the blog that morning, which if you haven’t read it yet, can be found here. The point of the conversation was the prayer. Margie was curious about whether I intended it to be purely personal, or would it apply to everyone.

I think that part of the matter might have been my usage of the word “advocate” which I realize, in retrospect, is a word that is typically used to communicate very specific and formalized responsibilities. Derived from a Latin root that is essentially a translation of the Greek word παράκλητος (paráklētos) the word refers to someone that is called, or summoned to stand beside you for support — often in a legal sense. For Christians, the most well-known use of this word is when Jesus used it to describe the coming Holy Spirit.

But I want to step back for a moment and think about it from a slightly different perspective. For my starting point, I’ll take a famous quote from the Shakespearean play Twelfth Night:

“Some are born great, some become great, and some
have greatness thrust upon them.”

It struck me that if you replace the words “great” and “greatness” with “advocates” and “advocacy”, the result is a pretty good description of the core of what it means to be an advocate.

“Some are born advocates, …” Most of us have known people that seemingly from the time they were born, realized that their place in the world was to stand by others and speak for them. We typically think of these folks in terms of being social workers, lawyers, or perhaps members of the clergy. But I would assert that there is another side of advocacy. Sometimes words are not enough. Sometimes actions, even strong actions, are required to “stand by” another.

Consequently, advocates are sometimes seen wearing flak jackets under desert brown or blue uniforms. Sometimes, to do their work, advocates have to don green flight suits and prepare to fight a war that is unthinkable, with the goal that it remains unthinkable. Sometimes advocates rush to be the first to respond to a tragedy so they can perhaps snatch some remnant of life from the jaws of death. Advocacy is not just about supportive words…

“…some become advocates, …” Here, we need to consider the biblical story of the Good Samaritan. We have no idea of what was going on inside the Samaritan’s head when he saw the man beaten by thieves and left for dead. Clearly, he could have crossed over to the other side of the road, like the religious men who had come by before him had done, and just kept going.

Instead though, Jesus says that he “took pity on” the man who had been attacked by robbers and so, in that moment, chose to become his advocate. A choice, by the way, that cost him time and money, no doubt disrupted the day he had planned for himself and could even have put him in added danger as the robbers might have still been in the neighborhood. Moreover, he happily took on the responsibility to see the job through to the end by making arrangements for settling any subsequent debts when he returned: more time, more money, more inconvenience.

“…and some have advocacy thrust upon them.” I want to look at this last situation in a bit more detail because it should feel familiar to anyone that is a caregiver to someone with a chronic disease. I don’t know about you, but nobody ever asked me if I wanted this job. Nobody ever said, “Your wife is going to get this horrible disease. Oh, and by the way, you get to watch her die a little more every day. So, if you could help out, that would be grea‑a‑a‑a‑t.”

The job that gets handed to a caregiver is massive, uncomfortable, long and so dirty that even Mike Rowe would think twice about taking it on. And it’s certainly not fair that we have to do these kinds of jobs alone or with too little support from families and friends — or even adequate training for what we need to do. So I would assume that we are in agreement that the life of a caregiver largely sucks. So what do we do? The truth is, the sun will come up tomorrow and we will have to do something.

A number of years ago, I went to a seminar where the leader called up to the front someone from the audience and held out two ice cream cones: one vanilla, one chocolate. He then instructed the person to choose one. The participant got the ice cream they picked and returned to their seat happy. The leader now repeated the exercise with a different volunteer, but this time only held up the one remaining ice cream cone, but he repeated the same instruction: “Choose one.” The result was a spirited conversation (read: argument) about the nature of choosing.

The point of the exercise was to illustrate how people have no problem choosing if they see alternatives, as when they can choose between vanilla or chocolate. However, problems arise when only one flavor is available. We don’t see that as a choice. Rather we devalue it as simply being all that’s left. Consequently, we derive no joy from what we do have, after all who gets excited about making do with the leftovers. Moreover, we can begin to feel pretty resentful and angry toward those enjoying what we don’t have, or who we imagine are enjoying what we don’t have. I can remember nights driving home from work obsessing about the smiling people in the cars around me and resenting the happy homes that I imagined they were returning to.

In the movie “The Passion of Christ” there is a powerful moment when Jesus, beaten and abused, embraced His cross with quivering hands as though it were the most precious possession He had in the world – which of course, it was. At that point, there were no options left available to Him. There was no choice to “go to the cross” or …

All that was left was the cross, and as an example to us Jesus chose it, embraced it, and created from it the best possible Good News.

I hope that you see where I’m going with this unfortunately autobiographical tale: As caregivers, we can easily become trapped in a sense of hopelessness that leads us to feel angry and resentful of those around us who are living “normal” lives. That anger and resentment, in turn, bears fruit in the form of a bitterness that convinces us that, in reality, we are the real victims of this disease, not the person dying. And this victimhood, is the final link in a vicious loop that feeds on itself, solves nothing and makes everyone involved in the situation more miserable by making us even more angry and more resentful.

The only way to break out of this death spiral — I call it that because it will kill you — is to choose the situations in our lives in which there are no options (in biblical terms, “our cross”). When in this way we not only, take up our cross, but truly embrace it, we discover that a joyously new and miraculous possibility emerges: The possibility of regaining just a tiny bit of that perfect Eden experience where life wasn’t supposed to be governed by choices between good and evil, right and wrong, or even vanilla and chocolate. We begin to realize the possibility of living our life of service immersed in and infused with the love of God. We can discover that in this midst of this broken, fallen world, God can create for us a holy place where truly, it is all good…

In Christ, Amen ☩

A prayer for when you’re out of options…

“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 bounty of Your love. But today, I especially want to bless you for making my gift of standing up for others into a way for me to experience a foretaste of Heaven. Please give me eyes to see my own calling, and the strength to complete what you have set before me. Amen”