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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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Loneliness and the “I”-word

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

This past week has been interesting, because everything seemed to have been about the topic that I am writing about this week. It seems like a lot of things in life right now are sort of congealing into a philosophical blob about why we are not closer to each other. Isolation, loneliness, “private” HD, wonderful friends being concerned that if they admit to being physically or emotionally less than perfect, they would lose me as a friend. It all feels like it is cut from the same bolt of messed up cloth.

I remember a dark time in my life where I would sit and watch traffic, and think that in one of those cars is someone that could be important to me, and to whom I would be important. But how will we ever meet? That’s when I decided to run an ad in a local paper looking for someone to date. (This was the 1980’s after all.) The results were initially not too promising. One date asked me to pick her up for our first date, and she met me at the door in a negligee! Then on a first phone call with another one, she asked me if I minded that she had really small breasts (actually she used a different, “earthier” word to refer to that part of her body). I told her it didn’t bother me per se, but I did find it a bit “disconcerting” that she brought it up 30 seconds into her first conversation with a total stranger. And then there was the woman who claimed to be a lesbian but was looking for a guy to share her 1 bedroom (!) apartment because she felt safer with a man in the house.

Then when I was about to give up, I got one more letter on personalized lime-green stationery, with the name “JANET” at the top in bold block characters. That one letter was worth it all…

Last time we considered loneliness from the standpoint of things that a caregiver can typically lose due to the progression of this disease. The things we discussed ranged from the patient’s inability to simply express love by saying “I love you,” to their inability to even behave like a rational human being.

But before moving on, there is one remaining piece of business that needs to be handled. You see, as I considered my situation, I have come to see that I am surrounded by people who love me in a multitude of ways, are willing to say so, and even demonstrate it in the form of hugs, gentle touches and reassuring words. I receive this kind of support from family, friends from church – even people I know from online forums and local support group meetings. So, while loneliness can result from not being told that you are loved (and that certainly is a factor) it was not for me the root cause of my loneliness. So I continued looking…

My next clue came when I saw a post online from a woman who described in heartbreaking detail the feeling of being invisible – of people not really seeing her. Professional caregivers would come into her home to take care of her husband, and as they went about their duties she would feel pushed to one side – not really a part of what was going on. Now that feeling struck home.

The HD clinic we go to is always great, but I can remember, for instance, going to an Urgent Care clinic and being treated like the bus driver. Which, if you think about it, actually makes perfect sense. After all, Janet was the patient, not me. Still, I have gotten used to being part of her care team, and then in those situations, I’m not.

So with that one insight, I began exploring the idea a bit and the more I thought about it the more real it felt. Moreover, connecting the dots between invisible and lonely is really easy. If you are invisible, you are unseen. If you are not seen, there is no way that you can be known, and it is the recognition of this isolation that produces a profound sense of being alone:

The progression from invisible to alone

But this progression also points to the solution. Consider this: If the sense of aloneness is brought on by not being known, the obvious solution is to become known. Consequently, being known results in you being recognized, and this recognition enables you to becoming fully present – which in this sense is clearly the opposite of invisible:

The progression back to present

Looks easy on paper, right? How do I become known, and in so doing, put this insight into action? Well, there is a word to describe this process of getting to know someone deeply by profoundly understanding them. Unfortunately, the best word to describe this process is “intimacy.”

I say “unfortunately” because that word today carries with it quite a bit of cultural baggage. Our society has turned intimacy into a virtual synonym for sex. Ironically this redefinition is occurring at the same time that common terms like “friends with benefits” are turning sex into a purely physical act that is totally devoid of anything even remotely resembling intimacy! If you have never heard the term, feel free to look it up online, but be forewarned: it may turn your stomach.

So what am I to do? I could simply accept the Orwellian redefinition of yet another word, but as many people have noted, to change the culture you don’t need a mighty army, just the ability to print dictionaries. If you can redefine the words people use, you can control their thoughts, and if you can control their thoughts, you can control them.

“But,” you might ask, “what real difference does it make?” Simply this: If intimacy is redefined as simply a contextless, amoral physical act, we have essentially undercut the emotional and moral underpinnings that hold our society together by making emotional isolation and hopelessness the norm. If intimacy is redefined simply as sex, then people will only feel comfortable having close relationships with people they want to go to bed with! And that number of people is much too small for us to be emotionally and spiritually healthy.

Or consider another potential impact. I have complained in the past about the lopsided distribution of men and women on the forums. The problem is, where are the other men, and where are they going to get the support they need? Well according to one social worker I spoke with about the matter, they aren’t going anywhere. They are just going without the love, care and support they need. Maybe the effect that I am talking about here is playing a role. But regardless, I think that it is high time that we reclaim the true meaning of intimacy as profound emotional and spiritual connectedness and reject the hyper-sexualized context into which it has fallen.

If you look up intimacy in a dictionary, you will see that the first synonym is often closeness. But for me, at least, this first-order approximation is lacking because I don’t want to just be close to someone, I want them to know me and to understand me. But more than that, I want to be able to know them and understand them because, you see, real intimacy is always a two-way street.

The real meaning of intimacy.

The next thing to notice about intimacy, and perhaps this is why true intimacy is rare in our culture, is that it takes time to develop. Intimacy doesn’t come together over an occasional cup of coffee at work, talking about baseball scores. It grows slowly as people become deeply known to each other by discussing topics that expose who we are and what we stand for. Moreover, intimate conversation can be difficult because we soon discover other things that are needed for true intimacy to grow and flourish. For example, people are not all the same so we need to be able to appreciate the differences between us, and accept each other for who we are – not who we might turn into someday. Likewise, we have to be willing to set aside making judgements because we might not like everything that we see.

In addition, there are other risks to losing your “invisibility cloak.” True intimacy is risky, and the biggest problem with people knowing you is that, well, people know you, and people are notoriously unreliable. Unfortunately, there is a small percentage of folks that actually enjoy making other people feel bad, and someone who is emotionally open forever carries a target on their back. If we are to be truly intimate with each other, we need to be open to exposing to each other who we really are at our core. It means I need to let you see my hopes and dreams, while simultaneously laying bare my fears and pain – as well as the scars that life has given me. I must bring forth into the light all the dark, injured or damaged parts of my soul so they might be healed. True intimacy requires honesty at an unprecedented, and oftentimes uncomfortable, level.

In short, true intimacy is an extraordinary act of faith, and it is not a process to take on lightly or cavalierly. Please don’t take that statement as being in anyway judgemental. You have your own decisions to make on this matter, but I have already made mine. For myself, I am deciding for intimacy, openness, and transparency. I have spent too much of my life in an emotional bunker where only a very select few were allowed in, and today I am reaping the result of those decisions. I am 66 years old and while I have friends, most of the people that I was ever really close to are either dead, or soon will be. This distortion has resulted in me having a hard time hearing compliments because I always say to myself, “Oh yeah, you say that now. But you wouldn’t if you really knew me.” The solution again is openness, transparency, and intimacy. When you are open with people around you, that excuse for avoiding an emotional connection goes away.

But there is far more important point about intimacy that I need to make, and that is about the relationship between intimacy and love: the one leads to the other. I dare you to learn to deeply know and understand someone and not start loving them on some level. I think that this relationship is why when comparing Faith, Hope and Love, Paul says that the greatest of them is Love. When you have received everything that God has in store for you, neither faith nor hope will any longer be needed. However, love comes from knowing so it will continue to exist and will even thrive as real intimacy grows over eternity.

And that point serves as an excellent segue into my last comment.

Regardless of what your decision might be about openness and transparency, there is one point about intimacy that is unavoidable. The simple truth is that no one is ever truly alone. As I pointed out a week or so ago using a passage from the Psalms, there is no place where we can go that God is not already there. Likewise, there is nothing that we can do to hide who we are from God. Consequently, when God says that He loves you, you shouldn’t doubt that love. The truth is that God doesn’t love us in spite of knowing us, rather God loves us because He knows us.

In Christ, Amen ☩

A prayer for when you are feeling invisible…

“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 intimacy of your presence in my life. But today I want to bless you especially for the ways in which your intimacy can draw us together. Thank you Lord, for my family and friends, and all those to whom I am drawn close in Your love. Please show me how to reach out to those who do not feel Your presence and give the me grace to help draw them into Your healing light. Amen”

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Loneliness – Dealing With Loss

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.

So let’s take another trip around the roller coaster. In general, Janet’s condition is much better and she is back to watching TV and, for now, isn’t wanting to sit alone in the dark. The perseveration, on the other hand, is worse and so she and Frannie are arguing more. Then to top things off, I was out of work sick three days this week.

Note to self: Next time you are home sick and feeling like dog-dirt, don’t try to work on an emotionally charged post. Crying (copiously) and coughing don’t go well together. Just sayin’…

Something that I have been trying to track down for a while now is the source of the intense loneliness that I am experiencing. Over this week and next, I want to look at some of the sources and resources that I have identified. Note that some of these sources will be common to all caregivers, while others may only apply to men. I don’t know – we’ll see.

My first thought was that the sense of being alone was related to Janet’s inability (or at times unwillingness) to say, “I love you.” This is certainly a common enough complaint. I have read many dozens of heartbreaking posts on Facebook with the same refrain: If only I could hear my husband/wife/child/mother/father tell me that they love me just one more time, but now they are apathetic and distant – or conversely they are angry and abusive.

Unfortunately there is a lot of bad advice being handed out in response to these posts – often by people who, though presumably well-intentioned, are in fact far more interested in maintaining the facade of normality than they are in solving any problems. Typical of this sort of response was one I read the other day that asserted, “HD or no HD, no one has the right to treat you that way!” This statement has so much wrong with it, that it’s hard for one to decide where to start. The main issue for me, is that the speaker clearly has no idea how devastating a disease HD is for the patient. Instead, they seem almost totally fixated on their pain, their problems, and their rights.

If that is your view, let me tell you buttercup, HD isn’t a head cold that you can get through by “toughing it out.” It is also not a choice like drinking or drug abuse. And your loved one is certainly not faking it or trying to selfishly manipulate you. Rather, you and the afflicted are living in a nightmare reality where any sense of “normal” is at best wishful thinking, and at worse a cruel hoax. If you haven’t grasped this fundamental truth, you need to do so now because there are no easy ways out. There are, in the end, only two options: you can choose to stay and be called a saint, or choose to leave and be called an asshole. In either case, the label will be correct. There are no other alternatives.

Then there are those who will say, “Oh, but what about the children? You have to protect the children!” That is undoubtedly true, but there are some hard truths to be recognized here as well. Children learn from what they observe. If they see Mommy or Daddy knowingly and mindfully sacrificing themselves out of love for a spouse or another loved one, the children will learn the depth of commitment and the holiness of sacrifice.

If, however, they witness Mommy or Daddy abandoning a loved one when the stuff starts to seriously hit the fan, they will learn that there are limits to the love of Mommy or Daddy. And let’s not forget that we are talking about an inherited disease. They will also learn that if I develop this disease, Mommy or Daddy will have no qualms about abandoning me too.

But even if they don’t inherit the gene, the problem of “limited love” still exists. The children can and do start obsessing about what else could cause them to be abandoned. What if I’m gay, or start drinking, or use drugs, or marry someone they don’t like, or fail at school, or start practicing a different religion, or wear too much makeup, or … ?

For her amazing first album “Jagged Little Pill”, Alanis Morissette wrote an autobiographical song named Perfect. This song is pertinent to our current conversation, because the last line has the parent affirming:

We’ll love you just the way you are
If you’re perfect.

Yes, by all means, let’s “protect” the children – but from what? There is no demonstrable benefit to shielding even small children from harsh realities. In fact, children are amazingly resilient when it comes to dealing with adversity as long as they know that they are safe. To see what I mean, think about the kids that are suffering from juvenile HD – like an amazing 13 year old girl I know about in Michigan who will likely not live to see 20. Her strength and courage is truly humbling. And then there are the siblings who like that girl’s two big sisters and little brother take it upon themselves to be best friends, advocates, playmates and defenders for their sick sister, even though they know full-well the inevitable outcome.

Finally, what is all this talk about rights anyway? If someone was injured in a car wreck would you go running up to them and demand to know who gave them the right to bleed all over the street? Well, maybe if you are in a Monty Python skit, but no rational person would behave in that way. When you are cut, bleeding is not a voluntary act. However, expectations change when someone’s brain is dying, suddenly the sufferer becomes responsible for all of their symptoms, and are held accountable in ways that no other injured person is ever expected to be.

So if that comment is typical of the bad advice that is out there, what constitutes good advice? Well, first and above all, learn as much as you can about this disease so you can always maintain a realistic view of what is happening and what is possible.

But the most important thing that we can do to handle apparent rejection and/or anger from a loved one is to remember that regardless of how bad or random things feel, there is someone in control: God. Of course people will put forward objections to this obvious truth. For example, there are the people who claim to be atheists because they couldn’t worship any God that would create HD. As much as I would love to address this view, there are so many fundamental errors in that one statement that addressing them in even a cursory way would take us far beyond the scope of this post. Still if you want to discuss it, send me a comment and we can talk. Alternately, C.S. Lewis wrote an exceptional book on this general topic called The Problem of Pain. As it so happens, I have 10 copies of this book on hand and I will ship a copy free of charge to the first 10 mailing addresses that are left in a comment to me.

A far more manageable point is illustrated in this hypothetical conversation:

“If God truly loves my husband/wife/etc/etc/etc, why isn’t He doing more to help them?”

“Well actually He is, and when you think about it, it’s really miraculous what He is getting done.”

“Oh yeah? What is God doing for them that is so miraculous?”

“You. He is doing you.”

Do you think your relationship with your loved one is an accident or random chance? It is not. As caregivers we need to learn to recognize the ongoing miracle that is our life and relationship with the one for whom we are caring. As an example of what I’m talking about, consider the case of Janet and I. When Janet first started experiencing physical symptoms we were living in Knox County, Ohio. Despite going to multiple doctors she was getting a variety of different diagnoses as to the cause of her troubles.

Then “coincidentally” I lost my job and the only one I could find was in western Pennsylvania. But when the doctor there looked at Janet, he realized that there was something neurological going on and gave us a referral to a neurologist.

The neurologist that “coincidentally” we were referred to was basically a bulldog in a white lab coat. I have no idea how many things Dr Brian Cotugno of Washington, PA (bless him) tested Janet for, but his gut told him that there was something wrong and was he was determined that he was not going to quit until he found out what it was. And he did. But, a new problem arose: at that time Janet got her diagnosis, the Huntington’s Disease Society of America (HDSA) did not have a Center of Excellence (COE) in western Pennsylvania. In fact, the nearest one was 4 hours away at the OSU Medical Center in the state we had just moved from!

Then “coincidentally”, less than a week later, the company I worked for got a contract at Wright-Patterson AFB and decided to move me to Dayton, Ohio to service it – 45 minutes from OSU, door to door. While going to OSU, Janet was under the care of Dr Sandra Kostyk, a wonderful doctor who taught me my first fancy medical term: Perseveration.

Then when Ohio winters started getting too bad for Janet and we started looking to move south, I was able to find a job in Houston, Texas which “coincidentally” has a COE at the UT Medical Center (where we are now seeing Dr Erin Furr-Stimming), and the management company that owned the apartment complex we lived in also “coincidentally” owned a complex in Pearland (just south of Houston) which significantly lowered the cost of the move by allowing all our deposits to be transferred. And now I am working for a company the CEO of which “coincidentally” had a brother that died of HD and so understands at a very personal level what I am going through.

And these are only the major “coincidences” in our lives. Now I suppose that all those things could have just lined up in the right way by accident, but at some point it requires less faith to simply believe that God is in control.

In Christ, Amen ☩

A prayer for when you have lost so much that you are feeling alone…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for always being present in our lives. But today I want to bless you especially for the ways that support and reassure me when I feel like I have lost so much – or perhaps everything. The problem is that I can’t see things from your perspective. Teach me to believe without seeing and show me how to guide others along this same path. Amen”

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A New Normal

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.

When Janet was admitted to home hospice, part of the documentation that we received was a brochure that described the stages of dying. One of the big markers that the booklet mentioned was that the person begins to disengage from “normal life”. It then goes on to describe them sleeping more and more, and being involved in this life less and less. This seems to be what Janet is beginning to experience. She is sleeping in her wheelchair large parts of the day and at night prefers to sit alone in the dark. No TV, no lights, nothing…

A couple weeks ago, I wrote a post about the circumstances under which you could find yourself serving as an advocate for another person. The situation where I spent the most time was where you have the position thrust upon you. For example, when I married Janet the possibility of a disease as devastating as HD never crossed my mind, yet 34 years later, here I am.

Unfortunately my experience isn’t that unique, the online support forums are filled with stories of children caring for parents, parents caring for children, and folks of all ages caring for siblings and spouses. Rarely are these “amateur” caregivers consulted or asked to help, but out of a sense of love, or loyalty, or duty, they step forward anyway to fill the breach – often without fully understanding what they are getting themselves into.

By the way, just to be clear, I have nothing but the utmost respect for people who take on these challenges. On the support forums I regularly read stories of amazing heroism and boundless heart that, to be frank, leaves me simultaneously in awe of what they are doing and a bit ashamed of my own kvetching.

But I also read a lot of posts from people who are in way over their heads, and who feel like they are drowning. Now there is a feeling I can relate to! In fact at one point in my life I felt like I was being constantly “waterboarded” emotionally. I never quite drowned, but I never quite got a full breath of air either. Now, though, I am clearly out of the “drowning” category and, while I still have a long way to go, I feel like I’m at least on my way to “heroic”. So what made the difference for me?

Looking back, the real turning point came when I realized that I had bought wholesale into the myth of a static life. Or to put it another way, I believed that there really was such a thing as “normal life” where one day followed the last and didn’t vary very much. Oh, there might be high spots like having a child, or going on vacation, but soon things would smooth out again and be “normal”. In the same way, I might encounter tragedies like divorce or losing a job, but again, “normal” always seemed to reassert itself.

Of course when I describe it in this way, it’s easy to see the mythic nature of a belief in the “normal”. For example, I can easily recall experiences that left me fundamentally changed – for good or bad. So why did I want to believe so badly is a life that was fixed and static? I think it was the same reason that people believed, for centuries, in a flat earth that was the center of a static universe where the stars were angels sitting on crystal spheres that danced around our heads producing a celestial music – it was simple.

You see, if everything is fixed and static then every day will be like today and who I am and what I believe that is adequate for today will be adequate for forever because nothing ever changes. But what if you don’t believe, or have been told, that you aren’t even adequate to meet the challenges of today? Well it still works because you at least have a fixed target in the form of lists of certain, unchanging rules to follow. In short, fixed and static is easy because it doesn’t require much thinking. All you have to do is keep your mouth shut and do what the government and/or church tells you to do, and you’re golden.

The only problem, of course, is that all this apparent simplicity isn’t real. Science figured out centuries ago that the cosmos in which we live is an active, dynamic place where the only real constant is that there are no constants. If we are honest, we have to admit that even God sometimes isn’t that comforting because He’s uncontrollable, unpredictable and is often up to things that we don’t understand or particularly like. To see what I mean, read the book of Jonah sometime.

Even at a personal level, the dynamic nature of the world in which we live brings with it some rather messy implications. Assuming for instance, that I am is adequate to meet the challenges of today, I may be found wanting when tomorrow arrives because the one thing I can be certain of is that tomorrow will be different from today, and often in unpredictable ways. Moreover, if I am not making the grade today, tomorrow will likely be even worse because the rules that people create are constantly becoming more complex and arbitrary, almost guaranteeing that I will break one.

No wonder my head went into a tailspin when a doctor told me not only that Janet was going to die, and what she was going to go through before the end came. The first casualty of the Huntington’s Disease was my sense of “normal”, and the really hard part was that HD didn’t slowly wean me away from normality, it just cut me off cold-turkey. No more normal, not now, maybe not ever.

It’s not a pretty picture, but it is the environment in which the “heroic” caregivers thrive. I’m learning that the key is to be as fluid and dynamic as the situation that I am in. In embracing this dynamism, I have a great role model: God. In one of the most sublime paradoxes of scripture, God is both lauded for stability and steadfastness, and characterized as wind, water or flame – all dynamic ever-changing forces.

What I’m talking about here has been called living “in the moment”. However, when we hear most people talk about living in the moment, it’s often a watered-down version of the concept that accepts the past and a future, but with the goal of simply not being unduly influenced by either.

What I’m learning that I need to do is to live in a “now” that exists totally divorced from both the past and the future: The past, because it is the home of disappointment and regret. We have talked before about how damaging it is to live in a world of “If only…”. But the past is also where we find what is “normal”, “usual” or “typical” – all of which are things that, given my current circumstance, only exist to taunt me.

Likewise, the future is where I find fear and worry based on and driven by, “What if…”. If these concerns can be addressed and managed, like we talked about last week, thinking about the future is a good thing. Unfortunately, in my experience, healthy planning can all too easily turn into obsessing about the uncontrollable.

So living in the moment can be messy too. But we are not alone in our quest for the divine now, as in all situations in life, there is Emanuel: God with us – and that is a source of great hope!

So, while this resolution might not exactly be a “happy ending”, it is where I am right now, and now, and now, and now, and…

In Christ, Amen ☩

A prayer for when you have lost touch with what is going on now…

“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 limitless expanse of eternity that will be our eventual home. But today I want to bless you especially for that infinitesimal slice of eternity called “right now”. Thank you for providing for my needs right now. Thank you for the patience, strength and wisdom that I require right now. Lord, show me how to reach out to those who are mired in worry and regret from the past, or despondent over worries about the future, and proclaim to them your grace, your peace, and your now. Amen”