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Denial as a Way of Life

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…

Another week past. Another week of watchfulness and (hyper) attentiveness. Another week of waiting for the “train to arrive.”

In the past, I have talked about how having a loved one with a terminal disease is like standing with them on a railroad track and watching the headlight of a train getting closer and closer. Well, to carry the metaphor further, the crossing guard arms are now down, the warning bells are dinging, and the train is blowing its horn.

This week we weighed Janet, and she is down another pound to an even 90 (or a bit under 41 kg). She is eating some, but not enough to maintain her weight – let alone gain any back. The “solution,” of course, is a feeding tube, or peg. However, Janet decided against that option years ago, and has that choice documented in her living will – along with a DNR (Do Not Resuscitate) order.

There have been those, even in our own family, who have asked how I could “allow” that. Now there is a funny word to use in relation to Janet: allow. She has spent her entire life as an independent person doing what she believes is right, and there is every reason to believe that she will die the same way – doing what she believes is right.

But more to the point, even if I were so inclined as to override her long-held wishes (which, by the way, I am not) what would be my logical argument, my justification? There is none.

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Once I was attending a caregivers conference and I asked how to help our son recognize the seriousness of his mother’s condition. I remember the session leader say,

“So he is in denial?”

To which I replied,

“Like a Pharaoh… ”

– a word play that I guess works better with an American southern accent where “denial” and “da Nile” are pronounced essentially the same.

When you start researching the topic of denial, the first thing you discover is that there is considerable disagreement, even among professionals, about the meaning, importance, and usefulness of denial.

For example, some point out that it is one of the first stages of grief and loss, and so has to be worked through on our way to the final goal of acceptance. Others see denial as a coping mechanism, a form of emotional hysteresis that helps people deal with things that are changing “too fast.” While still others see the term itself as being a way of judgmentally shaming a person into complying with our wishes.

And then there are the related issues, such as when denial takes the form of turning an inherited genetic disease into a “family secret.” But even here we hear people bloviating about “pros and cons” – though frankly I am still trying to find even one “pro.”

Finally, denial is also a lens through which you could view much of what I have written in the past 7 or 8 months. While my intent was to write about grieving, it is equally true that many of those early themes were also about coming to grips with reality and refusing to deny that things had fundamentally changed. To see what I mean, start with this link and, if you haven’t done it before, read all of our story.

From here, there are literally dozens of different directions that this conversation could take, but for now at least, I’ll concentrate on two that I see as being particularly significant for both caregivers and the ones that they are caring for:

Acceptance
The problem with acceptance is that many people think that they have come to accept the reality of what is happening in their lives, but are still living very much in denial. You see, acceptance isn’t just a mental exercise of intellectually recognizing that a given disease will be fatal – someday. It means accepting the reality of the negative consequences today – including those that seem too great to bear.

To begin with, accepting an unpleasant medical diagnosis can also mean admitting a weakness: a potentially bitter pill for someone who has prided themself on their independence and self reliance. Acceptance can also mean facing up to some big fears and scary symptoms.

For example, the list is long of HD patients who have been denigrated for apparent drunkenness, including Janet’s older brother John, who was accused of coming to his daughter’s wedding drunk. But luckily for him, Janet decided to not make her diagnosis a “Family Secret” (see below).

Moreover, many have an almost primal fear of people who are acting strangely or erratically – or of being someone who is acting strangely or erratically. In the same way, many people feel uncomfortable and even threatened by people that they can’t communicate with – whether due to disease or difference in language. We often have images in our mind of what “they” are like, and don’t want to be seen as being one of “them.”

Finally, there is the matter of “burdening” our loved ones. If you are ill, you likely do not want to think about your loved ones dealing with your decline and death.

Consequently, for all of these reasons – and more – we try to think of ways to hide what is going on. Unfortunately, hiding doesn’t work very well:

Hiding From Reality
The thing to remember when entering into this sort of conversation (either with yourself or someone else) is that there are no quick fixes, but rather a potentially long process digging through the layers of an emotional onion, or if you prefer, a parfait.

Family Secrets
While I will be discussing this matter in the context of chronic diseases – especially those for which either the disease, or the predisposition to contract the disease is hereditary – the following discussion would apply equally to any situation in which an individual or family decides to keep secrets including, but not limited to, sexual abuse, addiction, divorce, infidelity – even adoption.

For more information, try searching online for: “Why do families keep secrets?” What you will find will be enlightening, and occasionally disturbing.

As mentioned above, one of the first things that the “professionals” will tell you about family secrets is that we need to balance the pros and cons of keeping the secret. The problem is that while being open about the challenges that your family is facing may be uncomfortable or even painful, choosing to hide what is going on is truly toxic.

For example, my ex-wife and her new husband decided to attend a church that would not have welcomed them had the church known that she was divorced. To solve the “problem” imposed by the existence of the two children I had fathered, they simply changed the kids’ last names (for the sake of the church) to match their step-father’s. While this might have seemed like an easy solution to a problem, consider for a moment the day-to-day impact that it had on their family life.

Even leaving to one side the basic question of why anyone would want to belong to such an organization in the first place, there were many other ramifications to this one little secret. They couldn’t invite friends from church to school plays or sporting events because the friends might hear the kids being referred to by the “wrong” names. For the same reason, they also had to keep “church friends” separate from all their other acquaintances.

Likewise, when making prayer requests, or seeking counseling on even unrelated matters, they had to worry about whether they are saying too much or whether the request would give away the secret. And imagine the emotional burden of having to watch every word that came out of your mouth to make sure your story stayed consistent – and all that for the comparatively simple secret of a changed last name.

(By the way, in case you are curious, the secret was not kept successfully – my bad – and they were told to leave the church by the pastor.)

Now try to imagine what it is like to try and hide something like a chronic disease. While researching this post, I found this link from a few years ago about the stress of hiding Parkinson’s Disease.

While I understand that people have a variety of reasons for keeping quiet, I also understand that trying to hide the inevitable is the very definition of a quixotic quest. Additionally, when people do find out, you will still have to deal with all the same reactions – plus more. The two most common reactions are anger and disappointment.

  • “Why didn’t you tell me? I thought we were friends!”
  • “If I had known, I could have done more!”
  • etc.
  • etc.
  • etc.

I also understand the desire for privacy. In fact, as it applies to medical matters, the principle of privacy is (theoretically at least) enshrined in federal law here in the US. According to that law, we “own” our health status, and have the right to decide who else knows about it. But ethically, what happens to the right of privacy when the disease is a family matter? To make things very concrete, if Janet had been more “private,” her brother John might have gone to his grave A) not knowing he was sick, and B) with people thinking he was a drunk.

Still we need to acknowledge that having people know your secret is no guarantee of smooth sailing. There are always the twin problems of Stigma and Shame – which are really the same problem. The only difference between the two is who is doing the judging: Stigma is being judged by someone else and being found wanting. Shame is exactly the same thing except the judge is you.

Unfortunately, even in the 21st century, there are still way too many people who view chronic disease and other misfortunes in life in terms of whose “fault” it is. The people are still with us who asked Jesus why a man was blind, “…did he sin or was it one of his parents?” But in the final analysis, what difference does it really make? We should not stigmatize others, nor should we shame ourselves.

In Christ, Amen ☩

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A prayer for when you are in denial…

“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 certainty that You offer. But today I want to bless you especially for standing by me when I am in denial about the direction that life is taking me. Give me the courage to face the future without flinching. Amen”

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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”

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Doing the Right Thing

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…

Got Janet outside a bit this week. She had to get her blood test redone for her thyroid meds. As it turns out, she has lost enough weight (she’s now down to 103 lbs) that her PCP has decided to reduce her dose from 60mg down to 30mg. By the way, for her thyroid she takes a natural product called Armour Thyroid.

“Oh Armour, you mean like the meat packing company?”

Yes, exactly like the meat packing company. The medication consists of desiccated and prepared porcine (pig) thyroid glands. The more common alternative is the synthetic hormone levothyroxine (often sold under the brand name Synthroid). Unfortunately, this synthetic hormone works slightly differently and Janet does not tolerate it well. Over the years we have had to do a lot to maintain her supply. At one point, the government tried to shut down production of the prepared tablets by issuing a total recall for unknown reasons. In response, we had to go to a “compounding pharmacy” that would buy the medication in bulk from the manufacturer and make up capsules for Janet to take. Of course, that source wasn’t covered by our insurance…

But back to this week. It did Janet a world of good for her to get out. After getting the blood draw done, we had a bit of shopping to do, and although all she did was sit in the car, it was like a tonic for her. She was able to see people and feel the warmth of the sun on her face. Sometimes doing things that make you feel healthy are more important than blindly conforming to someone else’s vision of what it means to be “safe.”

Unfortunately, that euphoria didn’t last and a couple days later I almost had to bring her to the hospital due to suicidal ideation. We now have two security cameras (with motion detection) watching her, and she has a new medical alert bracelet so she can call for help – and all the sharp silverware and cutlery is up, out of her reach.

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This week, I have been thinking a lot about an oft-told myth that to avoid trouble with others all it takes is do what is right and tell the truth. Thanks to the drama being played out every night on the evening news, we can see how tragically wrong-headed that idea is. Telling the truth is just as likely to get you stoned as it is to get you praised. And a big reason for this tragedy is that the standard of public discourse today seems to be, increasingly, questions in the form of the old joke:

“So, are you still beating your wife?”

In other words, before you have even opened your mouth, the inquisitor (and I use that word deliberately) has already decided you are guilty. The only matter left to determine is, of what?

Now, it’s one thing if all you have at stake is your personal comfort, livelihood, or freedom. But what happens if you are a caregiver for someone who is dependent upon you? In that situation, things get a lot more complicated. For example, you can’t simply say, “…go along, to get along…” because “getting along” might mean doing or submitting to something that is harmful to the one(s) for whom you are caring. However, if you resist too much and end up in jail for your “crimes” – like a father who was recently arrested for playing catch with his daughter in an empty park – who takes care of your loved one then?

If you are feeling confused and hopeless right now, know that those feelings are by design. You are experiencing exactly what many in power today (as well as the would-be power-brokers) want you to feel. Their goal is to fill your mind with so much doubt and fear that you are willing to be led by anyone proclaiming that they can see the way out of our current troubles. Of course, the problem with these “solutions” is that the people handing them out only provide advice that is going to benefit themselves, with the result that you, your loved one, and your real needs are left twisting in the wind.

Today, there are people offering solutions from a mad variety of political, sociological, and religious positions. However, the choice between them often boils down to who can give out the most “goodies” – and it matters little whether the advisor is offering money, power, enlightenment, or Heaven. Rarely, if ever, do we hear the argument made about which of these myriad of options is true.

In the past, there was a method for identifying what was true that revolved around a “marketplace of ideas.” The concept was that if people openly and honestly discussed questions, the truth would win out because it would be the only answer that satisfied reality. But for this competition of ideas to reach the desired goal, there are two obvious prerequisites: First, as the English poet and philosopher John Milton stated, there must be a “free, transparent public discourse.” Second, the participants in the discourse have to agree that there is such a thing as truth.

Unfortunately, today we fail on both counts. Increasingly, manipulators are either making certain ideas unacceptable by fiat at the outset, or are redefining phrases to make the accurate expression of certain ideas impossible. For example, you can’t have a serious discourse about “equality” if the person you are talking with has redefined the term as a racist “code word.” In either case, the goal is to control and regulate discourse so that only certain ideas can be expressed – and no dissent is allowed.

Likewise, if the manipulators are going to control the discourse, they can’t allow themselves to be embarrassed when one of their ideas bumps into reality. So they simultaneously give everyone the power to define what is real for themselves in the form of a personal reality that can’t be questioned.

Consequently, when all is said and done, the once-vaunted marketplace of ideas has become little more than a philosophical smorgasbord from which one can pick and choose any concept that strikes their fancy:

“Yes waiter, I would like the Existentialist Blue Plate Special with a small order of Religiosity on the side. Oh but hold the Libertarianism, it gives me gas…”

And if you happen to believe two contradictory ideas, no problem. What’s a little cognitive dissonance between friends?

Now if life is going along pretty well, you might be able to get by with this sort of intellectual dishonesty. But if you are suffering from a chronic disease, or are caring for someone who is, you don’t have time for such mind games. If, as in my case, your wife is dying, that is a hard, uncompromising reality that demands attention. And it matters not a whit whether you agree with the diagnosis. CAG counts trump opinions. It is an example of what I call True truth and a firm grasp of this truth is one of the things that you need in order to deal with the situation I outlined above.

The second thing you need is confidence that you aren’t in this struggle alone, but this conversation needs to be bigger than just how to obtain effective protection from the, “…slings and arrows of outrageous fortune.” Rather we need to see all our actions in the world as part of a process in which we are just one part. (For extra credit this week, contemplate the phrase that I didn’t include in that last sentence. I didn’t say, “small part.”) But if I am just a part, who is orchestrating the whole? I would assert it is The One whose very being defines the fundamentally True truth that is the basis for the reality in which we live. Here are three aspects of the support that we can expect:

First, God has redeemed my past. Unlike the opinion commonly expressed by the mob, I don’t have to be the result of an immaculate conception. In fact, God has a habit of using people with “a past,” as folks used to say. While the perfect, sinless people that are so common today would be tearing down their statues, God says, “That’s okay. We can fix that flaw and We’ll turn it into something beautiful.” Note that in the end, the resulting life is not as it was before – it’s better.

Second, to complete the work of redemption, God is walking with me in the present. And yes, it often isn’t pretty, but we can be confident that it will all work out because, unlike me, God is totally committed to the perfect end result. Consequently, whatever you or your loved one must endure in order to do what is right, it will move you towards the ultimate goal.

Third, God is going before me into the future. It may seem unfortunate, but the simple fact is that you and I can’t see even one second into the future with absolute certainty. As a result, we are often taken by surprise by what happens next. However, for God, all of human history is like a vast tableau that He organizes and structures for our benefit. However, this Divine Work isn’t like a movie I saw once where Greek gods were playing chess with people’s lives. God is not sitting uninvolved is some far-off heaven. Remember, He is “Emmanuel,” God with us.

So, in the end, we see that while the proper course of action may not be easy, it is really very, very simple. Truth matters. Right matters. So tell the truth and do the right thing.

In Christ, Amen ☩

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A prayer for when you are feeling confused and hopeless…

“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 certainty of who You are. But today I want to bless You especially for not being silent in the world today. Thank you for going before me, walking with me, and protecting me. 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”

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Letting Go…

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.

Resuming where we left off last week…

A few weeks ago, Janet and I made the final arrangements to have her admitted to home hospice. It’s clear that Janet has been talking to Frannie because she now understands what “hospice” really means: Mom is dying soon. The three of us spent a lot of time last night hugging and crying. This is a very hard time and “letting go” is becoming very real.

One of the things that I have learned over the years is that grieving is a complicated business. In 1969 a woman named Elisabeth Kübler-Ross came up with what she called the 5 stages of grief (denial, anger, bargaining, depression and acceptance). While her work has come under some criticism in more recent years, it doesn’t take a genius to see that degenerative conditions like HD, complicate things by requiring you to basically start the process over every morning, because every morning there is a little more of your loved one “missing”.

For me, grief has become an open sore that is constantly getting picked raw. Thus even on good days, I have noticed that I tend to have a very “thin skin”. It’s as though all my capacity to deal with the world is used up by the normal flow of the day. Consequently, even small problems can leave my emotional reserves “overdrawn” and throw me into a tailspin. I imagine that this is what the next few months are going to be like, until Janet actually passes – and probably afterwards too.

But that’s not the whole story. The fact is, no story is over until God has His say. I just finished a piece that I wrote for the church newsletter that consisted of some thoughts brought up by the classic Eagles song, Hotel California. Besides ending with The Greatest Guitar Duet in Rock-and-Roll History, its words tell a story that haunted me for a long time. The thing was, I lived in California for several years, but they weren’t good years. In fact, they pretty much stunk. During my time in SoCal, I made a lot of mistakes and went through a lot of changes that left me feeling empty inside. I got to thinking that since California was the problem, all I had to do was get back to who I was before I moved to California. Then things would be good again. Then my life would be back on track – as the song said:

“…I had to find a passage back to the place I was before…”

Unfortunately there was one small problem with that approach:

“…’Relax’ said the night man, We are programmed to receive.
You can check out any time you like, But you can never leave!”

In other words, the hope of getting back to who I was when I left the hills of southern Missouri, was ultimately a false one. No matter how hard I tried, I could never leave behind me California and all the pain it represented. Eventually, though, I learned that the line I took as hopeless, really wasn’t. The point I was missing was that while its true that every experience permanently changes who I am (which is actually the point of the song), it’s also true that God uses the “stuff” I go through to help form me into what He wants me to be – and that includes something as tragic as the looming death of my beautiful Janet.

With that realization, I began to grasp the utter pointlessness of looking at past mistakes and life events from the standpoint of, “If only…”. The hard truth is that there is absolutely nothing that I can do to turn back the clock and undo my mistakes. As lawyers like to say, you can’t unring a bell, and as I know from my own experience, you can’t unmake mistakes. But just because I can’t do it, that doesn’t mean that it can’t be done. As a believer, all of those failures in my past are opportunities for God to step in with His redemption and grace. There is nothing that is so broken that God can’t fix it. Divorces, deaths, relationships, you name it – God can, and does, redeem it all.

In Latin, there is a motto that I have come to love: semper prorsum. It literally means: “always forward”.

I started out this blog a couple months ago by talking about a wedding in our family. As we now come to the end of the first phase of this blog – the “historical” part of this story, I can see a parallel between marrying someone and losing them to illness – which if you think about it shouldn’t be too surprising.

For example, we tend to think about both things in terms of events – weddings and funerals – when in reality they are processes that can start months or even years before the culminating event. For example, you don’t become united with a spouse all at once, rather you start drawing together the moment you first meet. In the case of Janet and I, that first meeting took place in a Friendly’s restaurant around the corner from Symphony Hall in Boston. Likewise, when you are losing a spouse or loved one to a terminal illness, the letting go doesn’t occur at the graveside. For us it started when we got the diagnosis of Huntington’s Disease sitting in Dr Cotugno’s office in Washington PA.

Another similarity is that, for both of these processes, the fact of what is going to ultimately happen starts as an intellectual concept that seems at first rather unreal despite our recognition that it will occur – someday. Then somewhere along the way, something happens that turns the ephemeral someday into the reality of today. For me, our wedding became “real” the first time I looked at Janet as we were doing something mundane like washing the dishes and I said to myself, “Yeah, I’m going to spend the rest of my life with that beautiful woman. I done good.” For our family, the point of grasping the full import of our impending loss came when we admitted Janet into home hospice and I said to myself, “Oh God, I’m not going to spend the rest of my life with this beautiful woman.”

One of the things that grief can do is turn your head around and keep you pointlessly fixated on the past. If only we had argued less, if only I had taken her dancing more, if only I had spent less time working away from home.

If only…

If only…

If only…

But you don’t find hope dwelling in the past because hope is about the future. It wasn’t so long ago that I couldn’t visualize tomorrow at all. When I tried to think about the future, all I saw was an endless string of dull, gray todays. Now I can sort of see to Christmas, which is good because we hear at Christmas one of God’s most beautiful names: Emmanuel – “God With Us”. This name assures us that God doesn’t stand back and view us in a detached way from some far-off heaven. Rather, God is committed to walking with His people as they walk through whatever dark valley that they must traverse.

Where can I go from your Spirit?
Where can I flee from your presence?
If I ascend to heaven, You are there;
If I make my bed in Sheol*, behold, You are there.

If I take the wings of the dawn,
If I dwell in the remotest part of the sea,
Even there Your hand will led me,
And Your right hand will lay hold of me.

If I say, “Surely the darkness will overwhelm me,
And the light around me will be night,”
Even the darkness is not dark to you,
And the night is as bright as day.

* ”…make my bed in Sheol…” is a euphemism for dying.
Hence, the line means, “Even if I am dead, behold, You are there.”

In Christ, Amen ☩

A prayer for when you are viewing life in the rear-view mirror…

“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 timeless love. But today I want to bless you especially for being by my side throughout the troubles of life. Please give me the faith to not reflexively obsess about past sins that I have confessed and You have long-since forgotten. Teach me to always “face front” as that is the only way that I can see where you are taking me. Amen”