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Flashbacks

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

The settling in process continues. For example, as I was writing this post the mail arrived with an envelope containing two copies of Janet’s death certificates. I guess it’s really official now.

So it’s official…

I had a chance to go on a little local radio station this week to talk about caregiving and grief. The host and I talked for about half an hour, and he was wanting to go longer, but our time slot was up. So before we stopped, he asked me on the air if I would be willing to come back and continue the conversation. I agreed, so I will be doing it again, same 8:30 am time slot, on the 9th of April. Also I will be getting an audio recording of the radio conversation that I will be publishing as soon as I can.

Frannie also had a visitor this week ‒ her boyfriend from Houston flew up to visit. He is flying back down to Houston Sunday afternoon.

I had a doctor’s appointment Thursday to get hooked up with a new PCP (Primary Care Physician) after our move up here. My blood pressure is high (which I knew about) but he restarted me on meds for that. He also did an EKG and some blood work. My heart is good and my blood sugar is fine – to tell the truth, I had been a bit concerned about that.

The really interesting thing, though, is that when I mentioned that Janet had died of Huntington’s Disease, my new doctor told me he had been involved in treating members of three separate families in Mineral Wells (pop. 16,788) that had members with Huntington’s! You just never know…

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About a year ago when I first wrote about the connection between PTSD (Post Traumatic Stress Disorder) and caregiving, it was sort of a new idea, but now the connection is well established. This week I had another encounter with one of the hallmarks of PTSD: the flashback.

Flashbacks are when something occurs that puts the person back into a past situation emotionally. For example, in the past I have been triggered by fire alarms that sounded too much like a klaxon, and was put back into the mental state of trying to find my alert EC135 to run to, when there are, of course, remarkably few planes of any sort in downtown Waltham, Massachusetts. This week I got triggered again, but this time by a dream about being a caregiver.

In some ways, the exact circumstance of the dream is a little sketchy, but I remember that Janet was upset about something (I don’t remember what) and was yelling about it. And as had happened so often in real life, the more I tried to explain things, the angrier she got. I eventually awoke with a start, and I remember being stuck for a time in the same old conundrum of how to explain whatever the problem was in such a way that she would understand and calm down. After a few minutes of my mind and heart racing, trying to come up with a solution, I calmed down myself and realized that there was nothing to figure out and no crisis in need of a solution. But boy, it sure felt like there was a crisis…

But that is one of a flashback’s defining symptoms: your mind and body respond to the situation as though it were happening again. My mind was racing; my heart rate was up and I could hear my pulse pounding in my ears; my breaths were shallow and rapid; and I was sweating like mad.

Again I was reminded of what it felt like to be in a seemingly hopeless situation. Of course the situation wasn’t really hopeless – and not just because the situation was at its root a dream and so of questionable reality. But even when the situation that the dream was flashing back to was occurring in real life, it wasn’t hopeless. That was a lesson that I had to learn back then and is apparently one I needed a “refresher course” on, or perhaps a bit of continuing ed.

Which brought up for me an interesting thought: Perhaps learning from flashbacks is possible. I know that’s a curious, counter-intuitive thought, but stick with me here.

Flashbacks are by definition reliving a past experience that was stressful and even dangerous, but doing so in an environment that is often totally safe. For example, in this most recent case, I didn’t really have to worry about anything bad happening to me. After all, I was lying safe and alone in my bed. No monsters hiding in the closets, and no boogeymen (boogeypersons?) hiding under the bed. So if you think about it, what better way is there to work through fear and trauma than to replay it in a totally safe environment? This realization can be huge – especially if (like me) you are one of those people who always thinks of the thing that they should have said on the way home. Similarly, it is so easy to imagine later what I should have done when this or that happened to me.

Unfortunately, I find that too often I don’t want to actually resolve a situation, not really. Often my sights are set much shorter like merely avoiding the consequences, or figuring out how to hide the problem so I don’t have to think about it. Eventually however, the heartache, whatever it is, will come out – often at a time when I am least capable of dealing with it. For example, there are the WWII vets who have suppressed trauma related to their service for 70 years or more. Now they are suffering from Alzheimer’s or other conditions, and memories that they thought were stuffed down so far that they would never again see the light of day, are popping back up to the surface, multiplying the trauma they are experiencing.

So given these consequences, why would we not choose to really deal with a situation and have it be done with? After I toyed with that question long enough, I finally understood that the logical answer I was looking for didn’t exist. Logically, there is no reason to put off handling problems. One of the first lessons I learned as a little kid was to stand up and deal with the past and face the future – but why is doing that so hard?

As I have thought about it this week I have become convinced that it is not just about human cussedness – though that undoubtedly plays a large part. Sometimes we are told that “stuffing it” is the proper solution. We are told that big boys (or girls) don’t cry and no one wants to hear our troubles anyway. Sometimes it’s the feeling that is so prevalent in culture today, that if it hurts, it’s bad.

For caregivers, the problem can be procrastination born of emotional, spiritual or physical overload. I know that I always found it way too easy to say, “I’ll think about that tomorrow…” Then at some point, there is so much stuff put on hold that either “tomorrow” can’t hold any more or suddenly (as was my case) you aren’t a caregiver anymore, and the pile of things that you have been putting off comes crashing down on you like a high-country avalanche. The result is that now I am not only grieving, but also trying to deal with all the stuff that I kept putting off.

Still, looking to the future, my continuing prayer is that as I experience flashbacks, that God gives me the grace to learn from them what there is to learn, and not simply recoil in fear so the lesson has to be repeated again in the future. And as far as the flashback I had this week, well I’m still working on that one. So though, here at least, I will never be perfect, I can keep moving forward.

In Christ, Amen ☩

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A prayer for when your past is coming back to haunt you…

“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 perfection with which You work together the intricacies of creation. But today I want to bless You especially for the wondrous and, at times, mysterious ways in which You weave together my life. I have seen Your glory shining is my mornings and Your majesty filling my nights. 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”