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:
- You shall love the Lord your God with all your heart, soul, and mind
- 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”