Which Way is Up?

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…

Even though Janet and I read together all the information on the web about HD, in the beginning I have to admit that I didn’t really grasp the significance of the disease. For several years, it really wasn’t too bad – in hindsight at least. At the time, of course, I was confused and had no idea how to deal with what was happening. Neither could I imagine what was coming.

Then one day all semblance of a normal marriage relationship went out the window as she got angry and started yelling that I was trying to drag her “down to hell” by sleeping in the same bed with her. Although it had been years since we had been “intimate”, she was suddenly concerned that I was divorced.

To make matters worse, she has began to experience something called perseveration. This symptom causes her mind would get stuck on an idea and she can’t let it go. One time she asked me if I had paid the rent 7 or 8 times over the course of an hour. Each time I answered that I had, and she accepted the answer – but only for 5 minutes or so and then she’d ask again.

But even as she got sicker and sicker, I tried to maintain the relationship with Janet as an anchor, a reference point of stability. One of the interesting dynamics in our marriage was that, as a math teacher, she was always very organized and believed in taking life one, carefully planned, step at a time. For myself, on the other hand, my personal motto has always been: “Just get started, inspiration will come!” Together, we had always made the differences work, but if she was no longer the smart, capable, organized and rational half of our team, what was left? And who was I?

As I write this, I am realizing how appropriate the image of an anchor truly is. Unfortunately, the anchor that I have counted on for so long is losing its hold on reality, and I feel adrift and rudderless. At times, I feel as though I don’t even understand my own mind, feelings or needs. Even as Janet’s anger becomes violent producing bruises on my chest and arms, I instinctively tell myself that despite what the doctors say, she really is OK – she HAS to be OK – so I must be the crazy one. Is this part of the grieving: resisting letting go of what was?

I know that it certainly ties into my fear of being alone. Looking back, I realize now how much of my life has been driven by that fundamental fear – and yet here I am again, facing a future of TV dinners and cold beds. In popular culture, there is the image of the crazy “cat lady” who lives as a recluse, alone with her 90 cats.

I wonder what the male equivalent (who doesn’t like cats) would be?


Irrespective of whether you are on the path of grief yourself, or are witnessing someone else’s struggles, there is one thing that you need to grasp up front. It’s very easy to underestimate the power and range of grief. For example, it is possible to grieve for many things: a lost loved one, a lost career, lost youth, and so on. Likewise, grief is not simply feeling “sad” over the loss of someone or something, grief is no mere emotion. True grief shakes the mourner’s world to its very core because it calls into question their most basic assumptions about themselves and the world in which they live. Ironically, love can have the same effect, but whereas love calls us to reevaluate ourselves in relationship to others, grief highlights our isolation.

The next important point is that the opposite of “grief” is not “faith”. If the mourner is a Christian, one of the hurdles that they may have to get over is the idea that their pain means there is something wrong with them spiritually. They may think, “If I just had more faith, then I wouldn’t be feeling this way.” In response, they may go out and read books and inspirational tracts in an effort to force themselves to be more “faithful”. Unfortunately, such self-powered efforts almost fail because they are based on the faulty assumption that faith is something that I can generate on my own – all I have to do is grit my teeth hard enough.

The truth, however, is that faith is not human-generated. As Paul points out concerning faith in his letter to the Ephesians, “…it is not of ourselves; it is the gift of God…”. The bigger problem, though, is that the whole premise is flawed because grief is not even about a lack of faith. To see this, consider the story of Jesus at the tomb of Lazarus, and the one bible verse that every Sunday School kid learns by heart: “Jesus wept.” Regardless of how you interpret Jesus’ tears, Jesus could not (by definition) be faithless. His grief was a very real, very authentic part of His humanity, and so is ours.

For myself, the basic problem at this stage of our journey, was that I needed Janet to be healthy more than I needed me to be healthy. After more than 30 years together, I only recognized myself as part of that relationship, that marriage. I was scared witless that when she died, I would in some way disappear too. I felt alone and disconnected. Even in church, I often felt like the odd man out because the people who were paying attention and saw my pain often just sat with their hands folded hoping I wouldn’t look at them. Rare was the week where I didn’t break down in tears during the worship service.

Please don’t get me wrong, the people in the church I attend are not bad, heartless people. Like all the folks sitting in all the pews of all the churches in all the world, they are imperfect people saved by grace. They just didn’t know what to do, so out of fear for doing the wrong thing, they did nothing. Which, ironically, is the only thing worse than doing the wrong thing.

Still, sometimes I did get the support I needed. One Sunday was particularly hard and as usual I was crying quietly, when suddenly I felt arms wrap around my shoulders. The lady sitting behind me had seen my upset and reached over the back of the pew, put her arms around me and just held me for about 5 minutes until the tears stopped. She never tried to cheer me up or verbally reassure me. In fact, she never spoke at all: words weren’t needed.

Thinking back on that incident and others, I’ve come to realize what people that are grieving really need. Hint: it’s not the stuff you read if you try Googling, “How to comfort the grieving”. The problem with the advice that you get from sites written by psychological experts is that they concentrate on giving you lists of things to say and not to say. However, the result is that if you follow that advice you end up sounding like a “psychological expert” and not yourself.

When someone is grieving openly in church or elsewhere, they are expressing an openness that is seldom seen in other situations. They have given up all pretext of maintaining composure or proper public decorum and their inner emotional state is on display for the whole world to see. What they need, more than anything, is for the people with whom they interact to show the same level of openness. Or to put it another way, they are crying from their heart, so they need you to be reaching out to them from your heart. (Please read this paragraph again.)

One of the most wonderful examples of this type of expression was my oldest daughter when she was a toddler. If she saw someone crying in church, she would go and climb up on the pew next to them, take their hand and cry with them. At that age, she didn’t understand why the person was crying, but she didn’t need to. Many times that simple act opened up the person so they could start talking about their pain – the first step in healing.

The real name for this type of expression is “authenticity”. Speaking from personal experience, I can assure you that people who are grieving have enough on their plate that we don’t have the energy to try and figure out right and wrong. Thankfully, being authentic isn’t that complicated, just look into your heart and say or do what you find that God has put there.

And don’t sweat saying the wrong thing. I would rather hear one statement that didn’t come out “quite right” but was said from the heart, than a 1000 psychologist-approved platitudes that you don’t mean.

In Christ, Amen ☩


A prayer for when you aren’t sure what is real or true…

“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 who You are. But today I especially want to bless You for being real. Sometimes the world seems so full of inauthentic people and situations that I feel like I’m lost in a carnival fun-house. So, thank you for the people in my life who are willing to reach out and feed my soul from the bounty that you provide. And when I am unsure and don’t know which way to turn, please remind me that I can always depend on you. Amen”

How We Got Here…

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.

My wife Janet and I were married in 1985, and for many years, things were good – which for me was a welcome change of pace. Before I met Jan, I was married and divorced two other times. Someday I may talk about those experiences, but for now we’ll start in 1985 when things were going right. While it was true that we had to move for work more than I would have liked, on the whole, life was good.

Before you knew it, we were well on our way to our “happily ever after”. I had a good job in Ohio, we owned a house, and had two kids (one boy and one girl), a dog and two cats. Then one sunny morning in September 2011, things changed. As a result of 911, my job went away and the only work I could find was in Lexington, Kentucky. This is important because we decided in order to keep the kids in school, I would take an apartment in Kentucky and drive home on weekends. Consequently, I didn’t recognize the changes in Janet for a long time.

All I saw at first was small stuff. Her temper got shorter and she started forgetting things, but the temper wasn’t that bad and we were both getting older. Who doesn’t have “senior moments”? Unknown to me, our son was catching the brunt of the problems. During the week when I wasn’t there, the arguments were getting increasingly irrational, and she would at times be incredibly demanding, insisting that things be done in exactly one way. Plus if Janet asked you a question twice and you didn’t answer it both times using the exact same words, you were, “…changing your story…” and obviously lying.

By this time, doctors were getting involved because Janet had also developed a thyroid condition and (due to the thyroid problem) sleep apnea. In addition, the HD also beginning to cause physical symptoms, like her legs wouldn’t stop bouncing. The Ohio doctors guessed a lot about what the problem could be – some said it was RLS (Restless Leg Syndrome), others said that it was something else. To tell the truth, nobody knew what was going on – maybe that’s why it’s called a medical “practice”.

Eventually, I got a permanent job in Pennsylvania. Because our son had graduated high school that fall, he left for college and the remaining three of us moved on to PA. But by then, the physical problems were getting worse to include choking on food and occasionally biting her tongue.

We eventually discovered the truth when we went and saw a neurologist in Pennsylvania. After running dozens of tests and having them all came back negative, he told us that there was one more disease that we should check. He said it was called Huntington’s Disease and that it was a degenerative neurological condition. He said we should go home and look it up online before deciding to take the test. Through our research we discovered that HD has no cure, is 100% fatal and (to top things off) is hereditary so both our kids could be at risk. We also learned that the average lifespan of a patient after diagnosis was about 15 years.

In the end, we decided to go with the test – which came back positive. That diagnosis was 11 years ago.


My name is Michael Porter, and that was the beginning of Janet and I’s new road together. Along with the medical changes came realizations that nothing was going to be the way we had planned. No golden years growing old together, no travelling to visit the grand kids – nothing. It was like our entire future had been stolen from us in a moment.

A while later, our son became engaged to a beautiful young woman from Texas. When my future daughter-in-law heard that I had done a little preaching in church, she asked if I would be willing to share a short message at their wedding. I said yes, and began considering what I wanted to say. They were getting married on a Saturday, but not just any Saturday. They were getting married the day before Palm Sunday.

As I read the gospel text for Palm Sunday (Jesus’ triumphant entry into Jerusalem) I was struck by that situation’s similarity to a wedding party. In both cases, there were revelers galore. Moreover, these party goers were all convinced that they absolutely knew what the outcome was going to be. The joyous crowds on that long-ago day in Jerusalem knew that Roman oppression was soon to be a thing of the past; and on October 20th of 1985 my new wife and I knew that we would be together forever – except we were all wrong.

So this is basically what I shared at our son’s wedding: At times like this we happily make plans and promise the future, but the fact of the matter is that the future is not ours to promise. Reality can intrude on our hopes and dreams in the form of illness, death and disappointment. In 33 AD Jerusalem, reality took the form of Good Friday crushing the hopes of political liberation but opening the way for Easter and a far greater liberation than the mere overthrow of Rome. In the same way, we have the promise of Easter that when our hopes and dreams fail, it is because God is brushing them aside to make room for something better.

After the service, the responses to my message were rather muted to say the least. It was, after all, not your typical marriage sermon. It wasn’t happy and uplifting, there were no hearts and flowers, and the new couple’s “sweet forever” was never mentioned. Our new daughter-in-law summed up the thoughts of many when she described it as, “…sort of a downer…”. However, I got a very different response from many others, specifically long-time married couples. As one old gentleman who had been married to his sweetheart for 55 years said, “About damned time somebody told these youngsters what they really needed to hear!”

Often when we hear the word of God being spoken from a pulpit we feel that the preacher has, through study and prayer, acquired some divine understanding of scripture that they are now sharing with us. While that sort of sermon does from time to time appear, the truth is often messier. Thanks to the Holy Spirit, the words that are spoken are often not the same as the words that were written. So in the end, the preacher often needs to hear the message too. Such was the case for Janet and I. Our wedding hopes were lying in shattered pieces on the floor, we needed to hear that God was making room for something better. We needed to learn a new kind of faith – a faith not that the future we have planned will come to fruition, but a faith based on the proposition that we have no idea what the future will hold, but that it will still be OK. We needed to have faith that something was being prepared, even though we had no idea what it was.

In Christ, Amen ☩


A prayer for days when you can’t see the way ahead…

“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 many gifts, but too often I only thank you for what I know and understand. The truth is that even when I don’t understand the involvement of your hand in my affairs, I can know that your will is there working for my good. Even when I am blind to the blessings that you are preparing for me, I can know that the preparations continue. So I ask you God not to show me your hand, or reveal your hidden blessings. Rather, I pray for the faith to trust in you even when I can’t even begin to comprehend what you are doing. Amen”