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You can’t choose, what you can’t choose

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

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

I want to start this week with a word of gratitude for the support that has been showered on my daughter Frannie and me. At one point, I thought of trying to respond to each one of you, but that plan quickly proved impractical. In the first place, there were so many comments that I couldn’t keep up with them all. But more importantly, I’m not totally sure that I even saw them all. The problem is that when you start receiving a lot of comments, Facebook doesn’t generate notifications for every one. So let me just say to all of you who commented, liked, or otherwise reacted to my posts about Janet’s passing: Thank you so much! It has been a true blessing to my family as we navigate these uncertain waters.

I want to especially thank all of you who shared how my writing has helped you to, in some small way, confront the challenges that you have before you – which is exactly what I was hoping to accomplish when I started this effort some 14 months ago.

One of the hardest parts of this effort has always been to keep myself engaged. As I have alluded to many times, the challenge is to resist the strong impulse to hide behind a façade that would allow me to avoid letting people really see what was happening in our life. But what kept bringing me back was the sure knowledge that what really heals (myself and others) is not convincing myself that everything is okay, but ripping off the bandages so others can see the wounds and burns – especially the self-inflicted ones. The simple truth is that those sorts of things are what give hope, and hope is what enable us to survive what we are going through.

Of course, that truth runs counter to what our culture is constantly telling us. Culture tells us that only perfection is acceptable – no wonder we see so much hopelessness around us. The mere hint of a skeleton hiding in someone’s closet is enough to get them ostracized and “canceled.” No wonder, also that there is so little intellectual honesty. Many people feel – and not without reason – that they can’t afford to be honest. Recently, I read an essay by a fellow named Brad Listi and one sentence really jumped out at me:

…I think that in the age of social media, we get to curate ourselves to such a fanatical degree that a lot of people have become masterly (sic) at cultivating online personas or a written persona or a digitally presented persona that is sort of like Teflon—all the rough edges are sanded away.

Setting to one side the fact that the author clearly has no idea what Teflon is, that statement certainly rings true as an indictment of the cultural environment that surrounds us every day. But for the most part that is not what I have found here among the folks that read and respond to my writing. So again, let me thank you all for the support, strength, and hope that you have given me and my family. We’ll get each other through this…

Whatever you are going through right now, it is survivable.

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Recently, in sharing the story of what has been happening in my life. I have had quite a few people say to me that with Janet gone, I can at least do what I want to do now. To be clear, I have no doubt what they meant when they spoke those words to me. What they intended to say was that at least life will be easier now, without the burden of caring for a terminally ill spouse – a point which is most certainly true!

However, given the way my brain works, it didn’t take me long to see that although they didn’t mean it in this way, the statement had an alternate understanding that highlighted a truth about myself, and I would suspect many other caregivers. That same statement could also imply that in some way my service to Janet was something that I was forced to do – it is that idea that I want to explore a bit.

Underlying the idea of being “forced” to serve is the belief that no one in their right mind would choose to do things that are hard and unpleasant. Perhaps this is why so many people today have a hard time understanding people in the military, first responders, … and of course, caregivers. We live in a society where the main deity being worshiped is named “Self.” Hence, even when people talk about altruism, it is often couched in terms that are ultimately selfish. For example, we are told that we should give to one cause or another because it “feels good to do good.” In other words, altruism isn’t really about helping the other person: it’s about making yourself feel good.

However, real altruism often imposes far more penalties than it bestows benefits. All caregivers have at one time or another gone to bed mentally and physically exhausted, and the only (minimal) comfort they had was that they did what needed to be done. Perhaps that is the normal state of affairs for you right now. I can certainly remember many times when it was so for me. A phrase that is often heard during the grueling training required to become a Navy Seal is, “Embrace the suck.” One former Seal has written a book of the same name. He says that what the phrase means is to:

…Lean into the suffering and get comfortable being very uncomfortable.

Whether you are fighting a war against a foreign enemy or a disease that is slowly destroying your loved one, in many ways the personal challenge is the same: proactively learning to get comfortable with being uncomfortable.

People have asked whether I wished that I had chosen a different path in life, and my answer is always the same. I would have preferred that Janet and her father did not have Huntington’s Disease. I would have preferred being able to spend more time laughing and cuddling with Janet. I would have preferred retiring and growing old with Janet while travelling around the country in an RV visiting our kids and grandkids. I would have preferred all those things and so much more, but all those preferences have one thing in common: they weren’t possible. And, as the title of this post points out, “You can’t choose what you can’t choose.”

I couldn’t choose a different circumstance or a different Janet because those options didn’t exist. At the end of the day we all – the great and the small – have to deal with what really is, and reality always wins out. We can for a time choose to ignore reality, but that is not the same thing as changing what is ultimately true. I could have chosen to divorce Janet when it became clear that she was not changing as I thought she would in response to my love. I could have also chosen to divorce her years later when I learned why she was not changing. Then there were multiple times when I could have chosen to divorce her for being verbally and physically abusive.

However, none of those “choices” would have changed the underlying reality that Janet was desperately sick and needed help. And none of them would change the reality of her ultimate fate, because ignoring reality doesn’t make it less real. Moreover, while reality may be uncomfortable or even painful, the thing to remember is that the very attempt to ignore reality imposes its own penalty that gets added on top of any discomfort that reality imposes.

So you hurt because reality sometimes stinks, and you have additional pain from trying to ignore it.

In the end, I choose reality. I choose to take on the job in front of me, to serve and to get comfortable with being uncomfortable.

And I thank God for the opportunity to do so.

In Christ, Amen ☩

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A prayer for when you are feeling “uncomfortable”…

“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 beauty of the cosmos that you created. But today I want to bless You especially for the times when reality is not particularly beautiful or pleasant. Help me to remember that I am living in a world that is broken and hurting, and remind me that you are setting things right, bit by bit. Thank you also for using me – flawed though I may be – to effect change and to help in setting things right. Please Lord, show me how to keep my eyes open to the brokenness around me and give me the courage and wisdom to set it right. Amen.”

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The Agony of Prolonged Expectations

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

If you would like to read our story from the beginning, you can start here: How We Got Here…

I got this title as a (perhaps inadvertent) gift from my sister in Indiana. Which is what the Porters are knee deep in right now: prolonged expectations – and not a little associated agony. As I posted on my Facebook timeline, Frannie and I have started a new policy in terms of caring for Janet where one of us is with her 24/7. During the day, I sit next to her, while Frannie handles the “night shift.”

So Frannie doesn’t have to sit up all night, we have an old mattress that we put on the floor next to Janet’s bed. That way she can sleep when needed. She also sets a timer so that even if she sleeps, she wakes up once an hour to check on her mom. This morning about 2:00 when Frannie woke up to check on her, Janet had somehow managed to pull her pillow out from under her head and the pillow was over her face! Janet is okay, but it scared both of us.

In other news, when the nurse came this week, he determined that Janet was not making enough urine to justify the catheter, so he removed it. In addition, he began to suspect a UTI (perhaps caused by the catheter) so he recommended an antibiotic. This event had a couple of interesting side impacts. To begin with, it became clear that Janet heard and remembered the conversation that I had with the nurse.

In addition, while she is continuing to have a lot of trouble stringing thoughts together and speaking, she certainly understands much of what she hears. For example, when the medicine that the nurse recommended did not arrive on schedule she got very agitated, repeatedly asking the time and asking for her medicine. When we eventually got the medicine, she quickly calmed down and slept. Since starting the antibiotics, she has also drunk more water.

As it turns out, this reaction to the medicine is another potential indication of a UTI. Often people with dementia lose the language skills to express physical discomfort verbally so it comes out as irritation, aggression, or agitation. Consequently, when the medications started soothing the UTI, Janet became more calm and relaxed.

Finally, we got our Christmas decorations up this week. While there is no danger of our home being seen from space, we like the little potted pine that I bought at the store.

It’s not very big, but it is placed and decorated with love. Janet can see it from her bed, and that is enough…

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In addition to this blog, I am writing other things. For instance, I am currently working on the editing of a metaphorical fantasy book that I have written, titled simply The Journey. While doing that kind of work I like to listen to music on YouTube. In the comments section on one of the videos, I spied a comment by a young kid (maybe 18) who was talking about being depressed, alone and lacking motivation. The poster was also complaining about catching a lot of “bad breaks” and couldn’t wait to “get on with life.” At that age I know that I wanted – and expected – things to happen fast. The paradox, of course, was that life is already moving very very fast, but at 18 it feels like it is creeping by.

Still, there seemed to be a common thread between my book and the journey he was on, so I decided to reply. The post that the kid left was already 30 days old, so I started by referencing that…

I hope that things are going better for you now than they were a month ago. But looking back from a perspective of having seen 67 summers come and go, there’s a couple things that I want to say.
First, there is no such thing as an accident, random chance, or luck. Those are all concepts thought up by people who figured that they need someone or something to blame for misfortune. The truth is that you don’t need a scapegoat to blame because misfortune is itself a myth. Everything has a reason.

Second, being alone can be a terrible thing. I know because after 35 years of marriage to a woman I would do anything for, at some point in the next month or so, I know that I will be alone again because the woman I love will die from a condition called Huntington’s Disease. However, through my wife’s and my journey together I have learned that I am never really alone – even when the bed next to me is empty. Eyes are too easily fooled.

Third, it’s good that you have big plans, but big plans need big reasons to exist – bigger reasons than you. You want to be fabulously successful in business? Great, but you need a reason bigger than your own comfort or self-gratification. You want to be a great artist? Wonderful, but your art needs to have a purpose beyond having an impressive retail value.

The bottom line is that your life is not about you and what you can get. The only life worth living is one that is about the world around you and what you can give.

My comment has gotten a couple positive responses, but I have no way of knowing whether the original poster has seen it – he or she hasn’t responded.

I wanted to mention this post here because those points are critical for caregivers. Messages espousing self-centeredness are becoming increasingly common – even among those who frequent the support forums. I would be remiss if I failed to point out that this trend counters millenia of Judeo-Christian teaching and practice. For example, consider the Ten Commandments. While there are certainly repercussions when I violate any of them, ask yourself: who is most directly impacted by the transgression of most of these rules, you or the one being lied to (or about), murdered, robbed or sexually betrayed?

The point is that in this mad rush towards a worldview that puts us (individually) in the center of the cosmos, we are abandoning the very things that made our world what it is today.

Another disturbing trend that has at least the potential of impacting caregivers is that I have begun to see exposé articles online decrying the number of unskilled, unprofessional people (that’s us, in case you were wondering) who are caring for ill and infirm family members. The articles then go on to wonder aloud how the government allows (!) this to continue. One article even likened it to practicing medicine without a license. Their “solution” is to force or coerce the aged and ill into moving into government controlled facilities – just the sort of places that government officials turned into death houses during the recent pandemic.

But above all, we must resist surrendering to the fear that characterizes so much of society. Remember that fear is the deadliest virus because it not only steals your future, but your present as well. Moreover, it has this deathly impact whether the thing feared appears or not. What is more, it matters not whether you are fearing a pandemic or autocratic politicians, because neither in the end have any control over what ultimately happens to you.

To attribute the power of life and death to germs and politicians is the basest form of idolatry. So I guess the real lesson is that when the resolution of a situation is delayed, don’t go looking for an alternative solution. The best answer is coming and it is always worth waiting for.

In Christ, Amen ☩

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A prayer for when you grow weary of waiting…

“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 in which You hold the world together, from the mightiest star system to the tiniest particle of dust. But today I want to bless You especially for the perfection of Your timing. I often feel like something is taking far too long, or conversely, that it flies by without time to even appreciate its passing. Nevertheless, thank You for always having what I need when I need it. Amen.”

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Doing the Right Thing

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

If you would like to read our story from the beginning, you can start here: How We Got Here…

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

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

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

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

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

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

“So, are you still beating your wife?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you are feeling confused and hopeless…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the certainty of who You are. But today I want to bless You especially for not being silent in the world today. Thank you for going before me, walking with me, and protecting me. Amen”

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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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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, #1

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

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

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

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

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

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

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

In Christ, Amen ☩

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

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