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”

Prayers or Pills?

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.

In case you just found this blog, this week’s installment is a little different from usual because it’s a continuation of the chapter from last week. So if you haven’t seen that post, you should read it first by clicking here. (Don’t worry, we’ll just talk amongst ourselves until you get back.)

In addition to what we discussed last week, this part of our family’s story also raises a common point of conflict between faith and medical care: How do I choose to treat any given symptom? In essence: “Do I pray about this, or do I take a pill?”

For most people, the answer is pretty clear when considering physical conditions. However, when dealing with mental or psychological problems, the water can get more than a little murky. Before going any further, please understand that I am not a doctor. So do not take what I’m saying as medical advice without first discussing it with your doctor – or perhaps even a couple of doctors.

Now with that said, let’s consider a few of the issues that you should take into account when considering a medication – for you or your loved one.

1. Can a pill address the real problem?

The first thing to consider is whether the real problem can even be fixed with a pill at all. To be sure, there are many medical reasons for psychological symptoms such as depression or anxiety, and the pills that medical science has produced are very good at handling these conditions. The problem is, what happens if the symptoms aren’t the result of a medical problem? If the symptoms are instead rooted in a spiritual problem, the pills many suppress them for a while, but the symptoms will return as soon as the pills wear off.

To address this potential, pills should ideally be given in concert with counseling from someone who is qualified to help the patient identify whether a pill is really going to help what is fundamentally wrong.

2. Lack of Authenticity

To highlight how complex these situations can become, let’s now consider the other side of the coin: Janet’s case. She didn’t want to have a pill “make her” be happy. Her underlying concern is that the happiness wouldn’t be “real” because the medicine is simply covering up a problem – which, of course, technically it is. The difference is that the “real problem”, in this case, is an incurable disease. Therefore, the best we can hope for is to cover up a troublesome symptom.

The fancy medical term for this type of treatment is “palliative care”. Again, much prayer and counseling should be used to guide you in making the correct choice.

3. Duration

This point goes with the previous two. Unless there is an underlying medical condition, psychoactive medication, should not be considered a long-term solution. If an otherwise healthy person is on this type of medication for years at a time, that diagnosis is likely one that should be revisited, with a different doctor, if possible. As an example of what you want to avoid, it is unfortunately common for doctors at the VA (the US Veterans Administration) to have vets suffering from PTSD and other conditions on a veritable cocktail of psychoactive drugs for decades with no real improvement in their condition.

Given a reasonable amount of time, if a treatment isn’t working, starting exploring what alternatives might exist for the failed treatment. For example, a recent study presents some exciting results for treating psychiatric problems with exercise. Note that the referenced document is a medical research paper so slogging through it can be slow going, but it contains a lot a good information.

4. Follow up

No competent doctor will put someone on a medication without ensuring that there is adequate follow up. The goal of this follow up is to make sure that the medicine is working with no, or at least acceptable, side-effects. In addition, while some side-effects show up right away, others can take much longer to appear. Therefore, ongoing checking and rechecking is needed.

For example, at one point Janet was on a common epilepsy medication to help control her body movements. She took it without problems for over 4 years, then suddenly it stopped working and began causing problems of its own.

5. Qualifications

The medication that I am taking can be legally prescribed by anyone with an “M.D.” after their name. But that doesn’t mean that just any doctor should be prescribing it. With specialized drugs, your primary care physician may not have had the training needed to identify problematic reactions before they become major health concerns.

Don’t be afraid to ask your doctors about their experience with the drug they are wanting to give you or a loved one.

6. Staying Alert

Continuing with the idea of healthy scepticism, whenever a new medication is recommended, you need to look it up online yourself. You can’t trust even the best doctor to tell you everything that you might need to know.

Janet has been blessed with some really excellent doctors, but once she was prescribed a drug that would have had a potentially deadly interaction with a thyroid medication that she was taking. This situation has only come up once, but in this case, even once would have been too much.

Beyond these sorts of situations, a caregiver has another advantage over a medical professional, in that you know your loved one better than they do. Consequently, you stand a much better chance of identifying subtle changes in their behavior. Good doctors will recognize this fact, and be anxious to take advantage of your “expertise”.

7. Faithfull Confidence

Finally, there is another spiritual principle to consider. In his letter to the Romans, Paul discusses a couple issues for which there was no definitive right or wrong answer. The logical point he makes is that if you don’t in good-faith have confidence that the course you’re going to pursue is acceptable, but go ahead and do it anyway, your actions are essentially saying to God, “It may be wrong, but I don’t really care.”

So whether you take the medication, or don’t, you need to be fully convinced in your own mind.

In Christ, Amen ☩

A prayer for when you are starting a new medicine…

“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 that You take care of us, heal our wounds and comfort us in our sorrows. But today I especially want to bless You for the knowledge that You give to doctors, researchers and scientists. Their skills make the world in which we live safer by turning killer diseases such as scarlet fever, into mere nuisances. Please guide my doctor in selecting a medication, knowing that in the end only You can ultimately heal. Amen”

Righteous Guilt…

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…

This whole time, our daughter Frannie (who has learning disabilities) has been living with us, and she and I are both taking medications to help us deal with what was going on. Janet, of course, isn’t taking anything because: a) she doesn’t like taking medicine and b) she fundamentally doesn’t trust doctors.

However, a shift occurred a few months ago when I had an appointment with the psychiatrist that was prescribing my meds, and who also treats Janet. After we talked about how things were going at home, the doctor told me that, for her own good, I needed to get Jan onto some medicine – even if it meant giving it to her without her knowledge. Before leaving the appointment, I told the doctor that I would think about the matter and get back to her.

One of the medicines that we had tried with some good affect, was Risperidone. Like nearly all medications that we had tried, Risperidone was not a drug specifically for Huntington’s Disease. Rather, it’s an atypical antipsychotic that is usually used to treat schizophrenia, bipolar disorder and the irritability associated with autism. However, doctors had found that for HD patients it often helped to even out their mood swings and aided them in getting to sleep. A big plus was that it is available as a clear, tasteless liquid that can be put into a variety of drinks and foods, whether hot or cold.

The only problem with the medication was that after taking it for a few day, Janet started complaining of headaches, so she had stopped taking it. But after considering for a couple days what the psychiatrist had said, I realized that the doctor was right: Janet needed something.

It was then that I remembered that we still had several weeks supply of Risperidone on hand from when Janet had tried taking it before. Checking the bottles I saw that the expiration date was December of the following year – the medicine was still good. So the next morning I put the dose that the doctor had previously prescribed (2 ml) into the iced tea that Janet drinks and watched for side effects: headaches or anything else.

After drinking the tea, Janet slept almost the whole day, but thankfully there was no sign of the headaches she had complained about before. But just as important, after the first day, the medicine continued to help her sleep, but it didn’t knock her out. The acid test, though, was whether her doctors would notice a change in her condition at her next HD clinic appointment, which was a couple weeks away.

The short answer is, yes they did! Not only did she do markedly better on the standardized tests that they always perform, but she filled out a form that they needed by herself and at one point even read a bit of a magazine while waiting. These last two items were particularly significant because the HD had severely impacted her ability to concentrate and to do simple things like read and write. It would be a massive understatement to say that the doctors were blown away by the positive change – but they couldn’t figure out what could have caused it.

After the appointment, and before we left, I got one of her doctors (the psychiatrist) to the side and told her what I had been doing. Janet’s medical team had a quick conference and the consensus was that since Janet’s mental state was so much better, I should continue administering the medicine. The doctor even gave me a new prescription. So for the past three months, I have snuck down to the kitchen every morning and put the medicine in her tea.

While the cognitive and emotional improvements are great, for me the nicest change is that when I say, “I Love You” she doesn’t get angry any more, and she even lets me kiss her. Win!

This part of our story raises two important questions, I’ll deal with the first one now and finish the conversation next week:

The medicine that I have started giving Janet is clearly helping her with a variety of emotional and cognitive symptoms, but at what cost for me? The doctors tell me I’m doing the right thing, the social workers confirm it and I can feel it myself intuitively. But somehow my heart seems to have missed the memo, and I felt rotten – especially since we had always made honesty and openness a hallmark of our relationship. After all the talking that I have done about authenticity, there is now a built-in inauthenticity at the very time, and in the very place where I wish I could be the most truthful and real.

To make matters worse, this is just one instance of a scenario where I am increasingly finding myself. Every day I have to deal with the fact that I, as her caregiver, effectively have two lives: the life that I live around friends, family and co-workers, and the simplified, dumbed-down, de-stressed version of that life that I present to Janet. To be clear, I didn’t get up one morning and simply decide to start withholding things from her. Rather, it started innocently enough with a “short private conversation” between me and her neurologist, and then proceeded by small steps as I took over greater responsibility for running the home, and tried to shield Janet from worry and harm. Unfortunately, there really is no alternative because, the simple truth is that she no longer has the coping skills to handle many of the things that are happening around her.

Having said all that, do I still feel guilty from time to time? Oh yeah…

One approach to dealing with the guilt would be to simply point to the improvements that she’s experiencing and decide that it is clearly the right thing to do because it is helping her. The problem with that answer is that it begins to sound an awful lot like, “The ends justify the means” – which is just wrong…

Instead, for me, a large chunk of the answer lies in recognizing that our relationship has changed, and that the HD has changed it. Over the past decade, it has subtly shifted from a spousal relationship between equals, to take on more of a patient/caregiver relationship that is decidedly unequal and preempts parts of the earlier relationship. However, this change doesn’t mean that I am allowed to care any less, or love her any differently. I have seen folks in situations like this justify having an affair, by saying that the person with whom they fell in love and married “…doesn’t exist anymore…”. Due to these mental and ethical gymnastics, they feel that they are therefore free to go find someone else to fill in the blanks for them emotionally and sexually. In fact, on forums dealing with issues like PTSD, this sort of story is dishearteningly common.

However, that sort of pathetic self-justification is never acceptable. As I have written recently on a veteran’s forum, what I signed up for in the marriage ceremony was very clear. There was no marriage contract with page after page of dense legalese, and our marriage license contained no “fine print”. In fact, the exact terms between Janet and I were stated very clearly in front of (as we used to say in the Air Force) God and everybody. So the only real question left for people in a similar situation is, “Are you going to keep your damned word?”

But even in situations where the original relationship was something other than between spouses, the change can be incredibly traumatic. For example, when a parent becomes symptomatic, a kind of inversion occurs where the child has to assume the role of parent to their own mother or father. A good case in point for this relationship change is Frannie. For her whole life, Mom was always the one that took care of her, now she has to be there to take care of her Mom.

The reason for all this discussion is to point out that the cause of the guilt lies in the fact that you can no longer abide by all the terms of the old relationship. For myself, it is clear that while I am still bound by the terms of our marriage vows, my new role of “caregiver” places demands on me that requires a new point of view on the relationship, and a certain amount of emotional detachment.

The part of me that is grieving the ongoing, incremental loss of the dearest friend that I have ever had, is wanting to cry nearly non-stop. However, the caregiver part of me realizes that if I did that, I wouldn’t be able to provide Janet care that she desperately needs. So, for practical reasons, the new relationship needs to overrule the grieving – at least for a while.

Consequently, there are times when, for Janet’s own good, I sometimes have to make decisions for her, and without her “informed consent”. Sometimes I have to try to shield her from troubling details of life. Sometimes I have to be “inauthentic” by putting a smile on my face when what I really feel like doing is collapsing to the floor in a puddle of tears. Sometimes I go to bed feeling guilty for being a “bad husband”.

Welcome to the “new normal”.

As I have said before, Huntington’s Disease existentially sucks…

In Christ, Amen ☩

A prayer for when you are feeling guilty…

“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 having created me as someone with whom you desire to have a relationship. But today I especially want to bless You also for giving me the ability to have relationships with those around me. But sometimes it hurts when those relationships have to change. Sometimes I feel guilty because I have to do things that the one I love might not understand. Please God, cleanse me from this guilt, guide all my actions to meet my loved one’s highest needs and remind me that, ultimately, you are the one in control. Amen”

How Much Forgiveness is Enough?

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…

After Janet’s unsuccessful attempt to have me arrested, life in our house has fallen into a rather depressing, repetitive pattern. My days consist of getting up at 7 AM, going to work, coming home (I typically buy dinner for us all on the way home), taking care of Janet and going back to bed (about midnight). Even at work there is no break from the pressures of caregiving because Janet typically calls 5 or 6 times a day to complain about something that I did do, didn’t do, or need to do. Moreover, these aren’t quick calls because the perseveration causes her to keep going back over the same topics over and over and over again.

A side effect of this routine is that I feel isolated from everyone around me. There have been times recently when the high-point of my week was “sharing the Peace of God” at church because the handshakes and occasional hugs allowed me to have actual physical contact with another human being. And every week there’s a fight about whether I even get to go to church. She always wants me to stay home because I am, “too tired” – and she says that being tired is what causes me to get angry.

Interestingly, I have discovered that I can also start an argument by attempting to apologize for something that I did wrong. An apology compounds the mistake because, in her words, “If you were really sorry, you wouldn’t have done what you did.” Therefore, I am also a liar and my apologies are deemed “worthless”. Of course, the only thing worse than apologizing is to not apologize – oy vey!

The absolute worst though, is that the only thing really needed to start a row is for me to tell her, “I Love You.” When I make that serious transgression of propriety, she gets mad and yells that if I really loved her I wouldn’t __________. Fill-in the blank with some real or imaginary complaint about my behavior.

To tell the truth, I don’t know how much longer I can maintain this schedule. I am constantly crying – but never in front of Janet, to her that’s just “Poor Mikey” whining about how bad his life is. Even Frannie is starting to become the target of Janet’s wrath and is increasingly calling me at work in tears to tell me about some argument that the two of them have gotten into.

How long, God, can this go on? Why can’t I have the “real Janet” back for just 5 minutes. She was always so smart and organized, she could tell me what to do.

Please God, just 5 minutes is that too much to ask…

This period was truly a dark time. The hardest part was that any mistakes Frannie or I made went onto our “Permanent Record” in broad strokes of dark, indelible ink. There was no forgiveness, no understanding and, very definitely, no mercy. Later, I came to realize that for Janet, her illness got in the way of being able to express forgiveness – a not uncommon problem with neurological conditions. I get it now that it truly isn’t Janet doing these things: it’s the HD. Unfortunately, Frannie is having a harder time remembering.

Yet despite (or perhaps because of) the darkness, this period taught me that one of the greatest gifts that God prepares for His children, is in fact forgiveness. Ultimately, it is thanks to His gracious and steadfast forgiveness, that we have assurance in our spiritual security and can be confident in the reality of our eternal home. However, forgiveness isn’t the exclusive purview of God. Indeed Scripture presents it as a central gift that we are to give freely to each other – as when Jesus taught us to pray, “…and forgive us our sins as we forgive those who sin against us…”

Unfortunately, forgiveness is yet another gift of God that today’s society systematically devalues. Modern psychology often turns it into little more that an enlightened form of selfishness by concentrating on the negative impacts that we will experience if we don’t forgive. Any doctrine or philosophy that treats forgiveness purely from the standpoint of human experiences and emotional consequences misses the central point that true forgiveness is, at its core, a spiritual declaration.

Before His crucifixion, Jesus said that those who believe in Him will do all the things that He had done, and will do even greater things than Him because He was going to be with the Father. Therefore, as Christians, when we forgive we are doing more than simply setting someone’s mind at ease, or stopping negative consequences for ourselves, our statement of, “I forgive you” is a way in which God is allowing us to actively participate in Jesus’ redemptive work.

By the way, when considering forgiveness, don’t fooled into thinking that forgiveness is only needed for big important things. Forgiveness is about the heart and the constant drip, drip, drip of “small” things can leave people with a host of problems including:

  • Feeling Personally Invalidated
  • Pain from Unresolved Guilt
  • Hopelessness About the Future

Of course, this fact shouldn’t be too surprising. After all, if you won’t forgive me for something small, why would I expect forgiveness from you for a big problem. So what should we do when someone apologizes?

First, honor all apologies that you receive by really taking the time to hear what they are saying. It could have taken then a while to work up the courage to say it.

Second, remember that forgiving is a holy thing so don’t just blow it off with a quick, “That’s ok” or “No problem”. Use the words “I forgive you” or “You are forgiven”. These responses may throw people off at first, but they are also very healing words. Consequently, Janet and I always used those words when forgiving our kids.

Third, Jesus also said what we bind on earth will bound in heaven and what we loose on earth will be loosed in heaven. God cares how we treat each other – sometimes more than how we treat Him. Think about it, of the 10 commandments exactly one of them addresses our relationship with God. The other 9 are all about how we treat each other. So in your heart, release (loose) them from the spiritual burden for what they did.

There are few things that we can give to another human being that are greater than forgiveness.

In Christ, Amen ☩

A prayer for when you don’t feel forgiven, or like forgiving…

“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 boundless forgiveness and mercy. But today I want to bless you especially for the gift of us being able to forgive one another. You know that all too often when I am feeling hurt and unforgiven, I don’t want to forgive either. At those times, I don’t want reconciliation, I want to get even. I want to make them hurt like I hurt. Please God, forgive me and show me how to make amends to those with whom I have unresolved anger. Please show me that what I really need is not revenge, but are loving brothers and sisters. Amen”

A New Kind of Safe…

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…

At some point our family moved to Texas for the milder winters. The HD was beginning to affect Janet’s balance and northern winters had her house-bound for months at a time. We chose Texas because our son was living in the Waco area. We ended up south of Houston because that is where God made an opening for us.

As time progressed, Janet’s condition continued to grow worse. Her anger got more physically violent and bruises she had been giving me were replaced by cuts and scratches. Her irrational outbursts meant that she was increasingly incapable of holding a reasonable conversation. She also became very sensitive about personal space. If someone was within 3 or 4 feet of her, they were (in her view) right on top of her. For example, she would tell me to do something, but then would get angry and start yelling because I was too close to her.

The most hurtful thing, however, was that she started questioning that I really loved her. She began to say that the only reason I was still with her was because I was afraid to move out. The truth is that I had decided long before that I was going to keep my promises and remain committed to her, no matter what. In previous relationships, I probably would have cleared out when things started getting bad – in fact I did, twice. This time, though, I decided that for once I was going to keep my word – even if she didn’t understand it or recognize what I was doing. Besides, I really do love her and the only thing that I can think of that could be worse than having HD would be to have it alone.

For a long time, I was at a total loss for how to deal with this situation, so regretfully I defaulted to getting angry. Then to add insult to (physical) injury, social workers and others were constantly asking her if SHE felt safe at home. How about me? Didn’t I count? Don’t I get to feel “safe”? Why didn’t I even get asked the question?

And hanging over the whole mess was the way that I thought that the modern legal system works. If the woman is abused, the husband quite rightly goes to jail. But if the husband is abused, the husband still goes to jail – after all, he must have caused it right? She held it over my head that unless I got my life sorted out and stopped “making her” get angry she could and would get me arrested – and then I would lose my job and be, “…left living on the street.” Eventually, she did try reporting me once but, thankfully, the situation wasn’t as grim as I thought. The state investigator, after talking to her doctors, social workers and the pastor of our church, realized what was going on and closed the case.

Thank you Jesus.

During this time, I spent a lot of time thinking (and complaining) about safety, and what it means to be safe. In the end, I realized that God has a dramatically different view of safety than I do. To me, safety meant to be in an environment where I am not at risk of injury or death. To God, safety is to be doing what He wants you to be doing – which for me was to take care of Janet as best as I could every day. While, I still don’t get it 100% right, with God’s help I am getting better.

Eventually I discovered is that the fundamental issue with safety is that I wanted to be able to evaluate whatever situation that I found myself in and determine for myself what risks were involved. Naturally, I then desired the opportunity and right to choose to opt-out of scenarios that I deemed to be “unsafe”. What that choice really boiled down to, though, was a heart-felt desire for comfort and predictability.

For God, on the other hand, His primary concern for me is that I be the best me possible – which, interestingly, is something that is only attainable if your life isn’t comfortable and predictable. The motive force behind this drive is a facet of Divine Love that wants us to grow, expand and mature because He knows that this sort of development is good for us and, in the long-term, makes us the strongest and happiest. Just an important, though, is the fact that God has things for us to do, and we need to get ready.

Getting back to my case, why am I needing to go through everything that was, and is, happening? God has something in store for me that, through faith, I can only assume will be wonderful. Unfortunately, who I am right now is not adequate to the “hack the mission” – as we used to say in the Air Force. Consequently, some remedial training is in order. God has a vision of who, not just I but, all of us can be. Moreover, He is relentless in seeing that each one of us conforms to that vision. To see what I mean, do a survey of the Old Testament and you’ll see that it is filled with references to God’s advanced planning for us and our lives. But you’ll also find a very clear description of God’s end goal, “You shall be holy: for I the Lord your God am holy.” Note particularly the word “shall” – God’s training program is not an elective course.

But all this discussion begs the really big question: We know that God loves us and cares for us, but is God really safe? If your definition of safe includes the concepts of comfort and predictability, the answer is unfortunately, “No, God is far from being safe.” However, if your definition of safe allows for God to stretch you, bump you around and maybe bloody your nose a bit to help you grow, then “Yes – God is as safe as it gets.”

Now all of these words sound great if you are, like me, the caretaker. But if they are to be really true, they have to be true for all of God’s children and not just a chosen few. So do these words also apply to, for example, people dying of incurable diseases – like Janet? What do they get out of these fine words? I believe a great deal.

I believe that Janet would be the first one to agree with the proposition that for a lesson to be learned, there has to be a teacher. In bearing up under the debilitating advances of HD, Janet is doing her part to help birth something new that will help the world. Janet is teaching everyone with whom she interacts about strength, faith and hope, but in this class, her lesson plan isn’t written on an easel, blackboard or even a set of PowerPoint slides. This time, the lesson plan that she’s presenting is literally her own body.

She has twice spoken to classes of future doctors so they can, through her, see and experience the symptoms of this rare disease. She has signed up to be an organ donor, and if in the end that donation is not possible, she has a backup plan of donating her body to a local medical school – a situation that she has called her, “last teaching assignment”. She can do these things because, even in her present condition, she has the confidence that God has her back and that when He finally brings her home, He will redeem all that is being held captive, perfect all that is corrupt, restore all that is lost and mend all that is broken.

In Christ, Amen ☩

A prayer for when you don’t feel safe…

“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 that You protect us. But today I especially want to bless You for the times when You aren’t totally “safe”. Thank you for a love that desires to see me grow so much that it requires me to be, at times, far outside my comfort zone. When those times come up, and I don’t understand, please help me to remember that You always manage the risks to bless me and prepare me for the life that I have ahead. I earnestly desire to match the vision that You have for me. Amen”

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”