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Of Heroes and Hypocrites

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 week has been bad. I don’t know how else to put it. Bad is bad. The latest brouhaha was over whether Frannie could go over and see one of her friends. Janet’s pronouncement? “No, you can’t go because you didn’t ask my permission!” Just to be clear, Frannie is 29 years old. At that point I stepped in and pointed out that Frannie is an adult and doesn’t need to “ask permission” anymore. Things went downhill from there. This came on top of a week that started with me taking Janet’s phone away from her twice to keep her from calling and haranguing Frannie. Then when Janet caught onto that, she started sitting on her phone to keep me from confiscating it. In the end, I had to tell Frannie to just turn off the ringer on her phone.

Then today, Frannie and her friend made arrangements for Frannie to spend one (1) night at the friend’s house. When Janet heard about it, she “forbid” Frannie to go. Frannie was crying, Janet was yelling over and over about all the issues that Frannie and I had already discussed and had solved, like: “Who will take care of your dog?” and “If you go over there, who knows what she’ll have for you to eat? You’ll get FAT!” In the end, I had to tell Frannie to just go upstairs and ignore her mother.

Whether it was right or not I don’t know, but after Frannie was gone, I told Janet as directly and as controlled as I could that Frannie does not need her permission. And that her opinions and advice on matters were no longer required or desired. I again tried to explain to her the degree to which her only daughter is terrified to be alone with her. Then I went upstairs myself and cried.

This is not how marriages are supposed to be.
This is not how families are supposed to be.
This is not how life is supposed to be … but here we are …

Semper Prorsum

If you’re wondering about the title of this post, let me put your mind to rest: I am not going to be talking politics or public health policies – though an alert reader may find corollaries to both. Rather, I will be talking, as I usually do, about how these apparently disparate topics bear on being a caregiver.

One of the earliest conversations I can recall concerning heroism was with my father. Career Army, he fought in both WWII and Korea, and tried to volunteer to go back in to “help out” during Vietnam (but that’s a story for another time). Being too young to understand either what I was asking, or his response, I once asked, “Daddy, were you a hero in the war? Did you get any medals?” He answered that no, he wasn’t a hero. And as far as medals go, “I told them, I killed all the damned people you wanted me to kill. Don’t expect me to feel better about it because you hang a chunk of metal around my neck.” The thing to remember is that my father didn’t regret a moment of his service to this country, he just fully understood the cost of freedom: some people live and some people die – on both sides.

In a parallel vein, I saw a press conference this past week where an Italian doctor was asked about the heroes saving lives in hospitals, sometimes at the cost of their own. In trying to give his answer, the doctor broke down in tears and just sobbed for several seconds. When he finally regained his composure, he managed to get out his answer: “In our hospitals there are no ‘heroes’ or ‘heroines.’ Behind the masks are just everyday men and women doing extraordinary things for their fellow human beings.” His point is, of course, that heroes are not some supernatural form of life, but rather just people who do their jobs regardless of the cost. I don’t know what hospital he was from, or what his name is, but that man is my brother.

The other thread of this post is about hypocrites. Now, you might not be aware of it, but the English word “hypocrite” is derived from the ancient Greek word for actor “hupokritēs.” Something I just learned recently was that what the word literally means is something to the effect of someone, “who performs behind a mask.” The reference is to the fact that in ancient Greece, actors in plays wore masks so the audience could immediately recognize the character they were playing. This idea, of course, melded in my “unique” brain with the doctor’s statement and got me wondering about masks in general.

For example, where do I – or for that matter any of us – get the masks that we wear? Is there a difference between masks that I acquire for myself, and masks that I am given? How do I take the masks off, and if I do, what will I find? What are the risks of going out without a mask? I will leave most of those questions for adventurous readers to dive into because, truth be told, a book could be written about each. Instead I want to look at how these related ideas of “Heroes” and “Hypocrites” relate to being a caregiver.

Someone on the outside of the situation, in essence looking in, sees a hero. They see someone battling adversity and terrible odds to snatch from death even a tiny bit of life. They see courage, faith and stamina. In short, they see the hero mask. However, the caregiver acting behind the mask, the hupokritēs if you will, has a different view. They see unending effort that is only occasionally successful. They see fear, uncertainty and, more often than not, exhaustion. To those behind the mask, there is no grandiose crusade to make things better, there is just survival.

One problem that can arise is when the one behind the mask hears the acknowledgements of those outside. The outsider’s visions of reality can be so fundamentally different that all the caregiver can see in themselves is hypocrisy and a profound lack of authenticity. Or to put it another way, they literally feel like they are just “playing a part” and if their life was somehow turned into a movie, they would show up in the credits as simply, “Caregiver 1.”

Of course the outsiders usually interpret a caregiver’s aversion to attention as modesty, and describe them as “self-deprecating” when in truth, we are just trying to avoid the pain and embarrassment that we believe will result when people discover who we really are. And by the way, this same dynamic can even apply when one caregiver looks in on another caregiver’s situation and decides that they are so much better than I am. While I’m a fraud, they really are heroic! And so it goes, each person seeing the next as being in some way fundamentally better than they are at handling the same rotten job at hand.

Predictably, the result of all this unhealthy self comparison is guilt – not unlike what I talked about all the way back in our conversation on “Righteous Guilt.” You can fall into thinking that if my loved one just had someone to care for them like      {Insert Name}    then they would be so much better off.

The truth, however, is that our placement here on earth is not an accident, so while there will always be room for improvement because none of us are not perfect, there is no room for guilt because God, who could have picked anyone for your job, knew that you were the perfect fit.

In Christ, Amen ☩

A prayer for when you are not feeling particularly heroic…

“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 lengths that You go to daily in order to support me. But today I want to bless you especially for picking me to perform the job that I am doing. Thank you basing Your choice on Your foreknowledge and not my track record. Amen”

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Mary lost her son, a story of Holy Week

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 week I’m doing something that I have never done before. You can call it a mindful memorial, a tribute, or just trying to deal with the reality of being surrounded by death from various neurodegenerative diseases – the actual label doesn’t really matter, I guess. On any given day, the various support forums carry a litany of death from a multitude of causes that have nothing to do with viruses, and so unfortunately draw little attention.

These brief notices are typically written by the deceased’s caregiver and naturally talk about how wonderful their late loved one was – which is as it should be. But something can get lost with that approach to memorialization: the caring people left behind. These short obituaries talk about the deceased’s challenges and bravery in the face of adversity, but rarely mention the sacrifices that the caregiver makes to allow their loved one to reach the end of their days with some dignity. Neither is it mentioned that these extraordinary measures are undertaken knowing that they won’t change the long-term prognosis even one single bit.

So this week I want to talk about one particular HD-related death from the standpoint of the patient’s caregiver – his mother. Please don’t see this choice as in any way denigrating the contributions of people with other relationships. Fathers lose daughters, children lose parents, and spouses lose each other, and they all perform noble service.

Rather, my choice of subject to stand in for the hundreds of thousands of caregivers worldwide was simple and pragmatic. It is someone that I know personally, and her son is also the fourth family member with HD that she has cared for.

The mother’s name is Maria and she might be familiar to some of you. She lives in Italy and over the past month I have posted several prayer requests for her and her son Giuseppe. So many of you have responded that Maria was, at one point, left speechless. She thought she was the only asking God to give her strength. Not quite! And for the record, I am incredibly proud of the family we have assembled here.

To make a long story short, Giuseppe had JHD and like so many of his countrymen, contracted the coronavirus. Maria spent many long hours living at the hospital helping to care for him. In fact, at one point she went 48 hours without sleeping or eating, and ended up collapsing on the floor. She said the nursing staff was initially afraid that she had suffered a heart attack, but she was just exhausted.

Then during Holy Week, the end came. Since then, there has been an unending stream of details to be managed and arrangements to be made. As I was thinking about this today (Wednesday, April 15th), I started writing. Even though I never met the young man, I had come to feel very close to him, despite his being on the other side of a very large ocean. So the writing was initially to clear my own head and help deal with my own sense of loss – though, to tell the truth, I felt a bit embarrassed to even mention my feelings.

Eventually, my feelings fell to the wayside and the writing morphed into a series of thoughts on motherhood in general, and Maria’s loving dedication to her family in particular.

I have been thinking about it and it seems to me that, for mothers, raising children involves a long series of “letting go” events. For nine months you carry them in the womb but even here, at the very beginning, they are a separate person, so there is a relationship with the child, a connection. The paradox is that they are at once, in you and yet distinct from you. They have their own gender, their own blood type, and their own heartbeat. While this heartbeat may from time to time synchronize with yours, it is unique.

This point becomes obvious at birth when the umbilical cord connecting the two of you is severed and they can become a fully independent human being. But still, you feed them from your breast and change their diapers. Then one day you have to let go of that connection because they no longer need the same degree of attention. I well remember the poignant moment when my Janet realized that she had just breast-fed our son for the last time. But he made it clear that, while milk was all fine and good, he wanted solid food – and lots of it!

After that, life seems full of letting go events that strain, redefine and restructure the connection: potty training, starting school, dances, dating, graduation, college, marriage, and parenthood – each with its own unique set of letting go moments.

But sometimes something goes wrong with that neat plan, and there are other things that a mother has to let go of. When Maria realized that Giuseppe had the Juvenile form of Huntington’s Disease, she had to learn to let go of his laughter and smiles, and eventually the personable young man that he was. Then in a kind of hellish regression, she had to return to feeding and changing him, and doing her very best to care for his most basic physical and emotional needs. But then, doctors and nurses became involved.

I will always remember the message I got from Maria when Giuseppe was being taken to the hospital. I am just learning Italian, but even without running the text through Google Translate, I recognized the words or phrases for “my son”, “hospital”, “intubated”, and “panicking”. The resulting online prayer request is when many of you became acquainted with her name, and there were dozens of you. (Thank you Pamela at the Huntington’s Disease Prayer Support Group!)

Eventually, in the final stages, Maria had to face letting him go completely in death. But even then, her mother’s love was so strong that she continued hanging on, becoming a living “la Pietà” mourning a son, not of marble, but of flesh and blood. She cradled him, craving one more moment of human contact. Soon even that was gone, as people explained to her about “contagions” and the necessity of cremation. She had to let go of even his physical body. In the end, it appeared that all she would have left to show for a lifetime of love and commitment, was just a few handfuls of ashes.

But no, God does not leave His children so destitute. Maria also has memories: The warmth and intimacy of suckling him that first time in the delivery room. The look of brave determination on his face as he headed off for the first day of elementary school. The pride he showed at graduation, and many, many more treasured moments that “moths cannot eat nor rust destroy.”

But in addition to the memories, God also has promises for the future. Promises of renewed hope and love that can, frankly, be so hard to hear while we are in the midst of the mourning. However, we can be confident that these promises have no “expiration date” and their time will come. For example, as people of faith, we have the assurance that death is not the hopeless end to an essentially meaningless life. Rather, one of the great lessons of Easter is that, as strange as it may sound, in death there is healing. When Jesus appeared to his disciple following the resurrection, He still bore the marks of the crucifixion. The difference was that they were no longer bleeding wounds, they were healed and Jesus was none the worse for wear. And so it is for Giuseppe and all our loved ones: There is no HD in heaven.

But for right now those around Maria are supporting her, and while she is so tired and full of grief that she doesn’t at times know which way to turn, she is not the kind to stay down. The life of a Christian in this world is not about “either/or” but “both/and”. We aren’t confronted with the alternatives of either sinner or saint, or either being faithful or grieving. In both cases, we are “both/and”. Always remember that the opposite of grief is not faithfulness, but rather apathy.

So if you have been praying for Maria, please continue to do so – which if you thinks about it is another case of “both/and”. She is both in need of prayer and already under infinite God’s care. To protect her from total despair, God is continuing to fill her heart every day with fresh hope, and the rod of steel that He placed in her spine means that this time of pain and sorrow will not leave her permanently bowed down.

This loss will not be the end of her, and the testimony of her story is yet another assurance that ours won’t be the end of us either…

In Christ, Amen ☩

A prayer for when you mourn…

“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 wonderous promises. But today I want to bless you especially for understanding and sanctifying our grief. In scripture we see Jesus first weeping at the tomb of his friend Lazarus, and then reassuring the two grieving sisters that in Him there is life regardless of how things look at the moment. And then again, we have Jesus’ reassuring words, ‘Blessed are those who mourn, for they shall be comforted.’ Thank you for the opportunity to experience the grief of separations so we might experience an even greater joy at our reunions. 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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Reaching Further Out, #1

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.

The end of a previous blog post refers to a “new normal” that, by default, assumes a certain amount of guilt. The intent of this comment was not to say that I constantly feel guilty, or to imply that you should feel guilty – both of which are incorrect. Rather, the point was that despite faith and grace, we still live in a fallen, broken world. So while most of the time we may feel good, there will be times when we are, for example, feeling tired and alone, that the guilt will creep back in. However, these feelings should not be seen automatically as an indictment of who we are as Christians or as caregivers.

You see, in addition to remaining aware that we live in a fallen world, we also need to be cognizant of the fact that we are also living (to use a war-time analogy) behind enemy lines. We need to remember that God is not the only spiritual power at work in the world. Evil also exists, and the personification of this evil delights is picking at our insecurities and accusing us of all manner of things. It doesn’t matter in the slightest whether the accusations are true or not. From the accuser’s standpoint, a twisted truth or a reasonable lie works just as well.

Right now there is a lot of talk on the various support forums about being “warriors” and, given the state of the world in which we live, I believe that as long as we don’t let it become a cliché, the current usage of that word is justified. To prevent it from becoming a cliché, we need to be clear that being a warrior is not a comfortable, easy life. As caregivers, patients or even everyday “civilians” unaffected by disease or other trials, we are in a daily battle against evil forces that strive to devalue, demean and imprison the human spirit.

These powerful forces can take the form of cultures that stigmatize or hide people because they are sick; unscrupulous people who would abuse the weak and helpless; governments that decide who has enough value to “society” to justify their lives; personal attitudes that cause us to run down and minimize our own value and contributions; and all manner of charlatans who, in the name of God, would try to steal the gifts of God from us. Opposing these forces will see you labeled as a subversive, a hater, and all manner of “-phobe.”

Now if talking about evil makes you uncomfortable, you are not alone. Most people today, Christians and non-Christians alike, don’t like talking about existential evil, preferring instead to believe that people and institutions pressing such agendas are simply “naive,” “misinformed,” “misguided,” “doing their best,” or are “just following orders” – now where have we heard that line before? To be clear, dehumanizing policies and beliefs don’t just happen. They are driven and justified by an evil that is not the result of simple ignorance, faulty socialization, some innate human tendency, or an impersonal force of nature. They are work of the same accuser that tries to convince you that you should feel guilty for giving your loved one the care they need.

Hence, now is not the time for a “soft” faith that attempts to turn the creator of the universe into a plush toy that is only fit for comforting infants and the weak-minded. As CS Lewis pointed out allegorically about God, “…He is, after all, not a tame lion…”. Now is the time for an army of real spiritual warriors to arise that in the cause of doing what is right, are willing to challenge anything, attack any bastion of worldly power and who fear nothing, save The One who leads them into battle.

In Christ, Amen ☩

A prayer for when you are about to enter into battle…

“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 strength and protection that You provide to the weak and defenseless in this dark world. But today, I want to especially bless you for calling me to be a warrior for your cause. I know that the way will not be easy, and (here at least) the compensation will be meager and the rations poor, but thank you all the same for the privilege to serve. Into Your hands I commit my spirit. Amen”