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… but what do I need?

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

This week is the beginning of Lent, so perhaps appropriately, it’s been a rough week. Early in the week, the perseveration was running wild. Tuesday she was calling me every 5 minutes at work, angrily demanding (in the same sentence) that I both save the marriage and give her a divorce. My boss noticed and was understanding when he called me in to talk about what was going on, I just sat in his office and cried. The result was that he let me work out of the house two days this week so I can be here with Janet. She seems much more at ease if she knows that I am in the house, even if I am upstairs working.

After our “meet and greet” at the Thai restaurant in downtown Boston, the first real date for Janet and I was at a family party. Janet had a niece that was born on Christmas Day so Janet invited me to go with her to the combination Christmas and Birthday party at her younger brother’s house. Shortly after we arrived, Janet got spirited off for some family matter so I was left standing uncomfortably alone in the middle of the living room. A short while later a tall, attractive blond lady that I later found out was Janet’s sister-in-law Marilyn came up to me.

“So you are Michael.” A statement. “Have you and Janet been dating long?”

“Uh no,” I replied, smiling nervously, “This is actually our first real date.”

Marilyn looked at me hard and said to no one in particular, “For a first date she brings him to a family gathering. My God! She’s brave!”

And with that she turned on her heel and walked away.

Y-e-a-h… Welcome to the family…

Sometimes what you read in this space is about what Janet and I have been through, and sometimes it’s about what I see online on the support forums – this one is a mixture of the two.

It seems like I have been seeing a lot of comments lately from folks that are feeling guilty, and the source of that guilt is very familiar. The post I saw that really sort of crystalized it for me was a woman whose husband had become unable to express himself romantically and she had two questions:

“Is this normal in HD, and am I selfish for still wanting things to be the way they were before?”

My answer was short and sweet:

“Yes it is, and no you’re not.”

The longer (more piquant) answer to her second question is that grieving the loss what you had is not, of itself, selfish. Becoming a caregiver doesn’t mean giving up your rights to have needs. Rather, even in the midst of the most trying of times, human needs still have a place. For example, consider one of the events that occurred while Jesus was hanging on the cross. He looked down and saw His mother with His disciple John. Even in the midst of what could be argued was the paramount point of all human history, He looked down and said to her, “Woman, behold your son.” and then to John, “Behold your mother.”

Devoid of any deep theological or philosophical meaning, the point of those statements was simple. A widow with no sons in that culture and time was in many ways essentially a non-person. She had no name, no standing in the community and no resources. We have to be careful here to not attribute to Mary too much spiritual insight. There is no evidence that she had understood the prophecies that Jesus made about His death and resurrection any better than the disciples did – remember she showed up at the tomb Easter morning expecting to find a dead body.

So you know she had to have been thinking about it. “My husband is dead, my son is dying, what will become of me?” Hence, even in the middle of “making all things new”, Jesus took time to deal with the very practical, very human need of His mother by making sure that she still had a place in the world.

Returning to the present for a moment, there would also be those who would say to caregivers, why are you worrying about your needs? Don’t you have faith in God? Real nice folks, eh? You are doing your best to hold things together and they give you the Christianized version of the “Just snap out of it, and cheer up!” speech. But again, being needy is no more a lack of faith than it was selfishness. Remember the shortest passage in the Bible: Jesus wept. More than anyone alive then or now, Jesus standing at the tomb of His friend Lazarus understood the situation, He knew where Lazarus was, and He knew that Lazarus truly was in a better place. But He also could see and feel the grief of Mary and Martha who, more than anything in this world, needed their brother back. So Jesus wept: for Mary, for Martha, and perhaps a bit for Lazarus too.

In our humanness we have needs, we miss things, we long for what was and what was good, and there is nothing wrong with that. The good news is that support and comfort is available, that is why God gave us each other. But for me, that doesn’t mean that these new resources for comfort and support replace what I had with Janet. In the first place, they aren’t sufficient to fill a void so large and in the second, I wouldn’t want them to anyway. Those are precious memories and feelings that I don’t want lost or replaced. At some time in the future after Janet dies I may or may not find someone else with whom to share life, but if I do, that relationship won’t simply be a replay or continuation of what Janet and I had. It will be something new and unique that God creates for us.

So although the support we can give to and receive from each other now has its limitations, it is nevertheless tremendously valuable, because what it can do is help me survive the pain and fear that I am experiencing right now.

The other thing to remember about the pain of neediness is that injuries take time to heal. This point is obvious when someone is cut, bruised or breaks an arm. Then people say, “Ok they are injured. They need to take it easy for a while.” Unfortunately, though, when the injury is to the person’s heart and spirit, the tune is very different. They expect the healing to be instantaneous. Just say a prayer and it’s all handled. Except that it’s not. Consequently, people are often reticent to open up about what they are experiencing for fear of being judged as “faithless”.

For myself, I’ve had to fight my way through these feelings in a very public way: I’ve been writing about them for the past three weeks and every Sunday morning people were expecting an update. During this time I have learned volumes about being steadfast by sorting out exactly what “loyalty” means. I have learned that living a spiritual life is anything but formulaic. I learned that at times truth and honesty can be risky, and that healing in itself can be a painful process. But the biggest thing I learned was that this process takes time. God doesn’t often snap His fingers and heal broken bones, or broken spirits.

But, even in my pain, I have faith because I learned a long time ago that in my life journey, nothing happens by accident. Instead God assures me that there is always a purpose behind what I am experiencing: growth. As a parent, God wants me (and indeed, all His children) to grow stronger and more capable over time, and so be as prepared for life as we can possibly be. However, sometimes gentle words and persuasion won’t get the job done. Sometimes the future ahead of us is going to be so hard that, to be prepared for it, we have to go through a kind of spiritual “boot camp” to toughen us up.

For me, a key part of that toughening up was when my Mom had a stroke while visiting family in Arkansas. An uncle had her admitted to the nearest hospital with a stroke unit – which it turns out was Mercy Hospital in Fort Smith. I drove up from Pearland and arrived the day before a major snow and ice storm that totally shutdown the city for about a week. While Mom was in the hospital, there were a lot more bad times than there were good. Mom was often hallucinating and one night over the course of an hour she mistook me for her father, my father, both of her brothers and a stranger that was trying to attack her.

From the time I walked in the door of the ICU, I was assumed by the doctors and nurses to be part of the care team, which in one sense was really great. Of course, it would have been even better if I had had some idea of what was going on and what needed to be done. As it was, what I went through was not unlike learning to be an infantryman while storming an enemy beach.

After a couple very long weeks where I literally lived at the hospital with Mom, they determined that she was stable enough to transport down to the Houston area. As I was driving back to make arrangements for her here in Pearland, I was totally exhausted. Then God interrupted my thoughts and told me, “Of course you know this is just Round 1”. After thinking about the statement for a moment, I understood. After Mom, Janet would come next. Janet would be the one suffering from dementia. Janet would be the one in pain. Janet would be the one confused about where she was. Janet would be the one frightened and angry. Janet would be Round 2.

And I’m now praying there is no Round 3 in this bout.

In Christ, Amen ☩

A prayer for when you are needy…

“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 all the ways in which You provide for all my needs. But today I want to bless You especially for even caring about my needs. You certainly would not have to, but in Your immeasurable love, You do. Please show me how to care for the needs of others as You care for mine. 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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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”

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Getting Ready for the End

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.

Back before Christmas, you may recall that Janet decided that she was tired of fighting and wanted, to go be with God. However, our son and his family visited over Christmas and that visit has been like a tonic for her. As things sit right now, her attitude is much better and she is wanting to resume PT — all good stuff. But having said that, she is still basically living on yogurt. We have tried a few other things, but the result is always the same: choking.

So for now, things are better, but as with most things related to HD, “better” is always a relative term that can change at any moment. So I’m enjoying the present respite and refusing to worry about the disease’s next phase — I’ll worry about that when it gets here…

In the past, I have written about the process of letting go that a family goes through, and let’s be honest, the final stage in this process — physical death — is going to be traumatic enough without needing to worry about (for the lack of a better term) the logistics of dying. Please note that several of the things we’ll be covering could have legal implications depending on where you live. One of the things that has surprised me about this blog is how far it has reached. As I sit here writing, the blog has been accessed from more than 30 countries. For this reason, I have no way of knowing what local requirements might exist in your local jurisdiction. So please check with appropriate authorities for what legal requirements you might need to satisfy.

Much of what we are going to be talking about falls under the heading of End of Life Planning or Final Arrangements. Hence, the first important point to make is: Do not wait for the “End of Life” to formulate your End of Life plan! In an ideal world, spouses should have addressed at least some of these issues as soon as they were married, but when you are young and are convinced that you live forever, matters like these are often avoided because it can be uncomfortable to consider your own mortality. If you have been in the group just, “kicking the can down the road”, it stops now. There’s no road left.

The matter is especially urgent if your loved one has, or has just been diagnosed with, a degenerative condition like Huntington’s, Parkinson’s or Alzheimer’s. For much of this planning, you are going to need their input which means that you need to be discussing these matters while your loved one still has the mental capacity to communicate their thoughts and desires. For example, if your loved one is nonverbal and not eating, that is not the time to be trying to figure out whether they would want a feeding tube.

Maybe it was because we were older when we got married, or more likely this is just who Janet is, while we were still dating she and I talked about issues like what level of life support we desired in the case of a catastrophic illness or accident. Most young couples discussed wedding plans over candle-lit dinners, we discussed the pros and cons of feeding tubes and ventilators.

It is important to note that while you don’t have to agree on everything, you do need to know what your spouse wants for him/herself. Whether you are legally assigned as their medical power-of-attorney (MPOA) or just recognized as the “next-of-kin” you have, at the very least, an ethical responsibility to speak for them and not insert your own wishes into the process. When making these arrangements, you can discuss, advise and counsel, but at the end of the day, it is their life and (right or wrong) it is their decision to make.

The other thing you have to decide is what happens after they die. Ever since Janet discovered that she did not have Hepatitis as a baby (long story) she has wanted to be an organ donor and so has been signed up for years. However, a couple years ago we realized that the exact circumstances of her death could compromise her organs for use in transplants. Therefore, as a backup plan, she made arrangements to donate her whole body the McGovern Medical School at the University of Texas to help train future doctors. Alternatively, if your loved one wants a traditional burial or cremation service, now is the time to make those arrangements and, if possible, make pre-need payment arrangements.

Next, the surviving family — and the caregiver in particular — need to be thinking about how they want to spend their time the day that their loved one dies. Do they want to spend the day:

  1. Praying, crying together and consoling one another
  2. Running around the house like a crazy person looking for phone numbers and legal papers

Obviously, Option A is preferable, so now is the time to be making that day possible. First, you need to know what actions will need to be taken, and who needs to take them. I spent a chunk of time while I was in the Air Force flying with “The Peacemakers” the Strategic Air Command, or SAC. One of the things that SAC loved was checklist, because checklists are a great way to make sure everything that needs to happen, does. When the stuff starts hitting the fan in a serious way (whether it is World War 3 starting, or your wife dying), it can be easy to get emotionally overwhelmed. The checklist provides a point of focus and a list of things that you can do to manage the situation.

To create your checklist go back over your arrangements and decide what things need to be done, the order on which they need to be done and who is responsible for doing each of them.

For Janet, if she dies at home we know that the number for hospice as our first call. They will, in turn, contact the organ donation folks and the medical school to determine the final disposition of Janet’s body. Next, we have a list of family members that we need to contact as well as our pastor and a couple folks from church. By the way, that contact list includes an item to update this blog with a notice that I have it written. All I need to do is fill in the date and time, and post it. If it sounds strange that I would get online at a time like this, well, regardless of which of the 30+ countries you live in, you all are family too, so I want you to know. Finally, there are the legal calls to the life insurance company, social security, and the state agency that is providing disability services for Frannie. She has learning disabilities and her mother dying impacts (in a good way) the services that she can get.

The second thing you can prepare ahead of time is a binder containing all your legal documents to include: Will, hard copies of the MPOA paperwork, insurance papers, birth certificate, an up-to-date list of the medications they were taking, and so on. If you are working with a hospice organization, they can advise you on what you should have available. Note that this binder can also come in handy if the need ever arises for you to bug-out fast due to a fire or natural emergency.

Finally, and I can’t stress this point strongly enough, make sure everyone in the immediate family understands the arrangements that you have made ahead of time. You don’t need the added drama of someone getting angry because they didn’t understand the plan. Remember also that when “The Day” finally comes, people (including you) can express what they are feeling in a variety of ways. Some may get busy “doing stuff”, some may pray quietly, some may wander around aimlessly, some will want to sleep, and some may develop a sudden urge to play a video game or watch an absurd, pointless program on television. And some, remembering a past incident or hurt that the disease caused, may want to get angry and yell.

Try to organize sufficient family time combined with times that let everyone process as they need, as long as their behavior isn’t disruptive to the others. When there are disagreements, try to remember the real reason for the upset probably has nothing to do with what the argument is about. Rather, it’s because you all have just lost someone that was part of your life.

So, how about an 11th commandment: “Thou shalt cut each other some slack.”

In Christ, Amen ☩

A prayer for when you are preparing for The Day…

“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 wisdom and care. But today I want to bless you especially for the promised eternal life that You have waiting for {The name of the person for whom preparations are being made.}. As I work to complete the preparations for their trip home to You, give me wisdom to make the right decisions, and when the day comes for their departure, please fill out home with your holy angels to soothe old wounds and to remind us of the reunion that lies ahead. 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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Rules and More Rules

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.

To get us started this week, let’s hear from the ’70s Canadian group, The Five Man Electrical Band.

Sign, sign, everywhere a sign
Blockin’ out the scenery, breakin’ my mind
Do this, don’t do that, can’t you read the sign?

Those words are the chorus to their 1971 hit song “Signs”. I’m bringing it up because these words highlight our cultural/global dependence upon rules. Of course this tendency is nothing new. In fact, rules go back to the very beginning when God told Adam and Eve the one thing that they were not allowed to do, to wit, “Do not eat from the Tree of the Knowledge of Good and Evil”.

I can’t image the number of words that have been expended over the centuries in attempts to fully explain that passage — and I am certainly not going to definitively resolve the matter with my poor ruminations. But one thing that always stood out to me is the inclusion of the word “Good” in the prohibition. Why would God want us to not know about things that are good? But I believe that question misses the point. Instead, I think that in that early innocent time, God wanted to spare us from was having to know the difference between good and evil. God wanted us to know good without an alternative, good that was unidentifiable to us as water is to a fish.

Unfortunately, we all know how the story turned out. Our ancestral parents disobeyed the one rule they were given, and then to make matters worse, when they were found out, they responded with recriminations rather than repentance. Adam, even tried to lay some of the blame on God! In the end, the knowledge of good and evil became for us a bell that couldn’t be unrung, and need for rules to govern our behavior entered the world.

Later, God gave Moses the Ten Commandments. But people being people, the Israelites immediately started asking for “clarification” of what this rule or that, really meant. Soon God’s simple commandments turned into a list of no fewer than 613 carefully crafted rules that you, literally, needed a lawyer to interpret for you.

By the time Jesus came along, even some members of the religious establishment realized that things were getting out of hand so they began the intellectual exercise of ranking the importance of the various rules by trying to identify the greatest of the commandments. During His conversation with a group of religious leaders, this enquiry gave Jesus the opening to whittle the rule count back down to just two:

  1. You shall love the Lord your God with all your heart, soul, and mind
  2. You shall love your neighbor as yourself

Very good rules indeed. Unfortunately, this moment of clarity didn’t last long. Rather, people (again being people) continued compiling their own lists of rules — and trust me, today there’s a lot more than 613 of them.

Although a rule-based society, can be troublesome for anyone, it is especially problematic when you consider the various “Alice in Wonderland” aspects of taking care of someone with a neurodegenerative disease such as HD. For example, of late, there has been a lot of conversation on the various support forums, dealing with the trials of applying for disability services. I have noticed a few things that most of these conversations hold in common.

First, the experiences are all remarkably similar, regardless of the country where the patient lives or the disease involved.

Second, the people overseeing the process are bureaucrats that have as their legally mandated role, not to help people get the services that they need, but to ensure that the “unworthy” are kept out.

Third, anyone that doesn’t meet the rules for the respective agencies are by definition unworthy and therefore bad (and possibly, criminal) people who are trying to sponge off the hard-working taxpayers and/or beneficent government.

The problem here is that rules create their own reality. For example, if you have a rule that defines a disabled person as being someone suffering from a disease on the official list, but your disease isn’t on the list, you aren’t disabled. It doesn’t matter if you can’t walk, or talk, or think rationally. It doesn’t matter that you have to wear a diaper and have no short-term memory, you are officially deemed to be able-bodied and so are expected to go out and get a job. I have read this same story coming out of the US, the UK, Ireland, Australia and even (especially?) Bulgaria.

For what it’s worth, I personally have memories of trying to get SSDI payments for Janet when HD wasn’t on the list. Even now, in the US, we are still struggling to get HD to a point of full parity with other diseases.

Then there is what we do to ourselves with rules over issues like suicide. I believe that the current sorry state of affairs exists largely because nobody likes to talk about suicide. The medical and psychiatric professions don’t deal with it well (perhaps because they see it as failure?). Families try to ignore, and hide, suicide due to the stigma attached to it. And the church, which should be a place of refuge and hope, is just as likely to be the place where you find rules that condemn the suicide to eternal damnation in the “fires of hell”.

But let’s be honest, it just isn’t that simple. My Janet can’t swallow without choking and is contemplating simply not eating again, ever. She has been fighting this disease for 11 years and has never wanted extreme measures used to maintain her life. Consequently, she believes that if you can’t even eat that is God telling you that it’s time to come home. Who am I to say she’s wrong? Where am I to draw the line between what is “justified” and what is not? What even gives me the authority to be drawing any lines in the first place?

It may have been there, but I don’t remember promising to, “Love, honor and draw lines until death do us part.”

Finally, we need to look at how rules can even impact the support that caregivers can receive. I have shared in the past that there was a time when Janet would get over the top, angry and violent. During one of those episodes, Janet grabbed my arm and dug her nails in so hard, that it broke one of her nails and left me with 4 bleeding cuts across the top of my arm. Not knowing what else to do, I called my pastor and started to tell him what happened. Before we got very far, my pastor interrupted me.

“Mike, you need to understand something. If your are about to tell me that Janet did something to you that broke the skin and caused you to bleed, I am legally bound by the laws of Texas to call the police and report it. Janet will be arrested.”

To say I was dumbfounded, would be putting it mildly. I thought this is the kind of intrusion into pastoral relationships only occurred in totalitarian countries. So after thinking for only a moment, I thanked Pastor for his time and hung up — we have never spoken about it since. In fact, we don’t talk about Janet’s condition very much at all.

Now believe me, I understand the supposed point of the Texas law, but I also fundamentally don’t give a damn about the state’s sanctimonious justifications. I know that Janet didn’t need or deserve jail, she needed help, but going forward with this so-called “pastoral counseling” while the state was in the room monitoring the conversation would have ensured that she got the first right away, and the second only later, if at all. It would have all depended on some bureaucrat agreeing with me about what Janet needed. So I had to ask myself, how much do I trust bureaucrats? And my answer: “About as far as I could throw them…”

Although my choice might not have been the best decision in the eyes of some, it is the one I made, and I would make it again because, to me, it satisfies Jesus’ second rule. But even so, I would not recommend it as a blanket solution, and I would certainly not judge anyone for making a different choice. However, I guess, in the end, that’s my real point.

Good rules serve as metaphorical guard rails along the sides of the road, that provide the room for reflection and prayer to determine the right path. Bad rules are like checklists that work to produce a result that conforms with what the rule’s author desires. To hell with what you or your loved one really needs — let alone what is the right thing to do.

This conversation about rules even applies within the Church. Different groups have different rules — the function of which is often to differentiate themselves from the heathen worshiping across the street who only, “call themselves Christians”. By the way, I haven’t mentioned it before, but I worship in a Lutheran congregation, so as a Lutheran I am well-aware of at least one glass house that is down range for the rocks that I am throwing…

The bigger problem is that in the world today, this attitude of rule-based spirituality is literally getting people killed. Persecution of people of faith, and Christians in particular, is up dramatically across the globe. Unfortunately, we don’t hear about it nearly enough because comfortable First World churches rest secure in the knowledge that the injured and dead aren’t really “one of us” — since when did that matter anyway?

Good rules are about prayerfully discovering God’s intent for a particular set of circumstances, like say you have a man that converts to Christianity in a culture that allows multiple wives. What should be the church’s response to his “extra” wives? What course of action would conform to the rule, “…Love your neighbor as yourself…”?

Bad rules are about social engineering and fitting every circumstance and every one into the same one-size-fits-all box, whether that box be secular or religious. No grace, no mercy, no justice, no mitigating circumstances — just the rule, the whole rule and nothing but the rule.

In Christ, Amen ☩

A prayer for when you feel boxed in…

“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 spiritual freedom that I enjoy. But today I want to bless you especially for not creating the kinds of rules that we do. We create rules that categorize and segregate people. You create rules that bless, guide and direct people. Thank you too, for showing me that regardless of how many times I break the rules, I can always depend on your grace and mercy. So please Lord, let me see others as You see them. Give me the courage to speak up for the oppressed and weak, and I humbly ask that you would bestow on me the privilege of being an advocate for them in the world. Amen”

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Reaching Further Out, #2

One of the things that I have recognized the need for is a place to expand the scope of what the blog talks about by adding supplementary posts covering other material that is related to the weekly updates, but which don’t fit well into those conversations.
This is one of those additions.

I had not originally planned to have a follow-up for last Sunday’s regular post, but earlier this week I read something online that changed my plans. What I saw was a Facebook post from Corrie Harris on an HD support forum. It was so good and to-the-point that I knew I had to give her words broader exposure. So here they are. I have touched up the formatting a bit, and fixed a couple misspelled words, but the heart, love and message are all Corrie’s:

In Christ, Amen ☩

01/04/2020 00:40

So, I have been contemplating whether or not to type this out and hit the send button — or just not post and continue to suck it up.

There is a scripture that says, “…Rejoice with those who rejoice and weep with those who weep…” I don’t know how many years I’ve been on the Huntington’s support group pages and have known each of you, but I have known a few of you for over 5 years, all online. We get close because we are all going through similar things. You were and still are my ONLY support. My only cheerleaders. The only place I go when I want to vent or rejoice. Until about 18 months ago, most of my time online was spent either in questions, research, agony, complaining, or being stressed out of my mind by my husband Richard’s HD symptoms and new-found personality.

Many of you have been there for me and I will always appreciate each one of you for that. Your presence reassured me that I was not alone in my pain. But now, with thanks to God, a better HD team, better meds for Richard, and an absolute change in my own attitude and heart, that season has melded into a new one. I see my husband, and the marriage covenant in general, differently. Things are now in the “happy” and “going good” zone, but I still feel a little alone here in my JOY.

I think it has bothered me for a while, but I couldn’t put the exact words to the emotions I was feeling — now I think I understand. I realize that reading a post saying, “I’m having a good day.” can be hard to read when things are falling apart in your own life. I know how hard that can be because I have been on the other end of that relationship!

But, I now realize that the JOY and the good times, days and moments are equally as important to share, so we can rejoice with and encourage each other. Frankly, too many caregivers suffer alone and die early deaths because in the end they are undone by the disease they are fighting. Without encouragement, the tragedy, heartache, anger and pain of this disease sucks the life out of us.

A spirit of complaining and drudgery does NOT help any of us. In fact, it kills us, and it kills our families. It makes it such that our children never want to come home for the holidays or even to visit. I have not handled all of these things well in the past, so I guess more than anything I am just wanting to say that we need to celebrate each other as much as possible, and to not forget that laughter and joy is excellent medicine. Love is a healer and hope gives LIFE.

I have avoided this group for a bit because (as I said before) I was feeling isolated due to how well things were going. But now I’m back and I’m putting out these honest thoughts in hopes that I can help to build an authentic community that is healthy and helps to produce life-giving and long-lasting friendships. This disease is brutal and we all need friends, especially friends that understand.

By the way, I celebrated our 32nd wedding anniversary today by posting the news on Facebook. Richard saw the post and liked it, but there was no other response. I haven’t had a gift, a card or even a real hug in nearly 5 years. Richard can no longer provide those things, and that breaks my heart. For many years I was selfish and angry and could not see the difference between the HD and him, but now I do. Lord, have mercy on me for when I didn’t! Richard would love me back if he could. I know it.

Corina

A prayer for when you are having a moment of clarity…

“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 clarity that you bring to my life. But today, I want to especially bless you for the clarity of understanding that I now have, as fleeting as it may be. In scripture, you told Abraham and his descendants to set up monuments or institute holy days so they will remember Your goodness and blessings. Lord, please be a living monument in my heart. Never let me forget the lessons that I have learned, or the perspective on life that you have brought 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”