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In Memoriam, J.A.P.

בָּרוּךְ אַתָּה ה’ אֱ-לֹהֵינוּ מֶלֶךְ הָעוֹלָם,

Barukh ata Adonai Eloheinu, melekh ha’olam
Blessed are You Lord God, King of the Universe

The above phrase begins most important Jewish prayers because regardless of whatever else you are wanting to say, it is important to start by putting things in their proper context – and there are several things that I want to say, and that is the proper context for saying them.

First, on Jan 10th 2021 at 2:30am my beloved wife Janet Anne Porter passed from this world into eternity due to the actions of Huntington’s Disease. Note that I didn’t say, “…the victim of Huntington’s Disease…” because Janet was never a “victim” of anything. She may have lost the physical battle, but was spiritually victorious.

Second, though I am crying (copiously), now is not the time for just sadness. I also rejoice because while her body is cold and inert, I know that the part of her that was really “her” survived HD. And I don’t mean that in the soft sort of way that is common today, as in “…she will live on in our hearts forever…” While that is most certainly true, it is not what I mean.

Janet was far more than an amalgamation of biochemical interactions that other amalgamations of biochemical interactions (i.e. us) interpreted to be a “person.” For Janet, as with all people, there was also that part of her that wasn’t confined to the limits of her physical body, and because it is not dependent upon that body for its existence, it continues to live even as the body that housed it degenerates and dies.

Call that part of her (or you!) the spirit or soul – the label isn’t what matters. What matters is that it lives on and, as you read this, Janet is united with the One who created her and the spirits of all those friends and family members that have gone before her: people like her mother and father, her older brother John who also had HD, and her beloved godmother Aunt Ann whom she missed so much. And then there is the broader gathering of the faithful that The Apostles’ Creed simply refers to as “the communion of saints.”
No doubt she will be anxiously awaiting her other brother, Danny, who still has HD.

What all that reuniting looks like I have no idea, but I know and celebrate this: Janet’s mind is again clear, her hands and feet are steady, and she can now run and dance again to the tune that she, and not Dr Huntington, calls.

Third, I want to assure you, my readers, that just as Janet’s life did not end, mine did not either. As you might imagine, I may be “off the air” for a bit with family responsibilities and what not, but I am not going away. The work that my sister (with inspiration from God) set before me as a challenge, is far from done. We still have a very long way to travel together, and there are unfortunately new folks joining our solemn caravan every day.

If you wish to memorialize Janet and her contribution to the world, please make a donation in her name to the support and medical research organization for the disease that affects you, and which is active in your country.

…and please remember in your prayers those who are still fighting the good fight for the care and dignity of our families.

In Christ, Amen ☩

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A prayer for when you are confronting the end…
“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 reality of eternity. But today I want to bless You especially for providing for my loved one who now lives on in Your Divine Presence. Even though I cry now, even as You did when Your friend Lazarus died, I know that the grave does not have the final word and the doorway that we call death is not a corrupting, defeated end, but a glorious new beginning. Amen.”

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Mary lost her son, a story of Holy Week

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

This week I’m doing something that I have never done before. You can call it a mindful memorial, a tribute, or just trying to deal with the reality of being surrounded by death from various neurodegenerative diseases – the actual label doesn’t really matter, I guess. On any given day, the various support forums carry a litany of death from a multitude of causes that have nothing to do with viruses, and so unfortunately draw little attention.

These brief notices are typically written by the deceased’s caregiver and naturally talk about how wonderful their late loved one was – which is as it should be. But something can get lost with that approach to memorialization: the caring people left behind. These short obituaries talk about the deceased’s challenges and bravery in the face of adversity, but rarely mention the sacrifices that the caregiver makes to allow their loved one to reach the end of their days with some dignity. Neither is it mentioned that these extraordinary measures are undertaken knowing that they won’t change the long-term prognosis even one single bit.

So this week I want to talk about one particular HD-related death from the standpoint of the patient’s caregiver – his mother. Please don’t see this choice as in any way denigrating the contributions of people with other relationships. Fathers lose daughters, children lose parents, and spouses lose each other, and they all perform noble service.

Rather, my choice of subject to stand in for the hundreds of thousands of caregivers worldwide was simple and pragmatic. It is someone that I know personally, and her son is also the fourth family member with HD that she has cared for.

The mother’s name is Maria and she might be familiar to some of you. She lives in Italy and over the past month I have posted several prayer requests for her and her son Giuseppe. So many of you have responded that Maria was, at one point, left speechless. She thought she was the only asking God to give her strength. Not quite! And for the record, I am incredibly proud of the family we have assembled here.

To make a long story short, Giuseppe had JHD and like so many of his countrymen, contracted the coronavirus. Maria spent many long hours living at the hospital helping to care for him. In fact, at one point she went 48 hours without sleeping or eating, and ended up collapsing on the floor. She said the nursing staff was initially afraid that she had suffered a heart attack, but she was just exhausted.

Then during Holy Week, the end came. Since then, there has been an unending stream of details to be managed and arrangements to be made. As I was thinking about this today (Wednesday, April 15th), I started writing. Even though I never met the young man, I had come to feel very close to him, despite his being on the other side of a very large ocean. So the writing was initially to clear my own head and help deal with my own sense of loss – though, to tell the truth, I felt a bit embarrassed to even mention my feelings.

Eventually, my feelings fell to the wayside and the writing morphed into a series of thoughts on motherhood in general, and Maria’s loving dedication to her family in particular.

I have been thinking about it and it seems to me that, for mothers, raising children involves a long series of “letting go” events. For nine months you carry them in the womb but even here, at the very beginning, they are a separate person, so there is a relationship with the child, a connection. The paradox is that they are at once, in you and yet distinct from you. They have their own gender, their own blood type, and their own heartbeat. While this heartbeat may from time to time synchronize with yours, it is unique.

This point becomes obvious at birth when the umbilical cord connecting the two of you is severed and they can become a fully independent human being. But still, you feed them from your breast and change their diapers. Then one day you have to let go of that connection because they no longer need the same degree of attention. I well remember the poignant moment when my Janet realized that she had just breast-fed our son for the last time. But he made it clear that, while milk was all fine and good, he wanted solid food – and lots of it!

After that, life seems full of letting go events that strain, redefine and restructure the connection: potty training, starting school, dances, dating, graduation, college, marriage, and parenthood – each with its own unique set of letting go moments.

But sometimes something goes wrong with that neat plan, and there are other things that a mother has to let go of. When Maria realized that Giuseppe had the Juvenile form of Huntington’s Disease, she had to learn to let go of his laughter and smiles, and eventually the personable young man that he was. Then in a kind of hellish regression, she had to return to feeding and changing him, and doing her very best to care for his most basic physical and emotional needs. But then, doctors and nurses became involved.

I will always remember the message I got from Maria when Giuseppe was being taken to the hospital. I am just learning Italian, but even without running the text through Google Translate, I recognized the words or phrases for “my son”, “hospital”, “intubated”, and “panicking”. The resulting online prayer request is when many of you became acquainted with her name, and there were dozens of you. (Thank you Pamela at the Huntington’s Disease Prayer Support Group!)

Eventually, in the final stages, Maria had to face letting him go completely in death. But even then, her mother’s love was so strong that she continued hanging on, becoming a living “la Pietà” mourning a son, not of marble, but of flesh and blood. She cradled him, craving one more moment of human contact. Soon even that was gone, as people explained to her about “contagions” and the necessity of cremation. She had to let go of even his physical body. In the end, it appeared that all she would have left to show for a lifetime of love and commitment, was just a few handfuls of ashes.

But no, God does not leave His children so destitute. Maria also has memories: The warmth and intimacy of suckling him that first time in the delivery room. The look of brave determination on his face as he headed off for the first day of elementary school. The pride he showed at graduation, and many, many more treasured moments that “moths cannot eat nor rust destroy.”

But in addition to the memories, God also has promises for the future. Promises of renewed hope and love that can, frankly, be so hard to hear while we are in the midst of the mourning. However, we can be confident that these promises have no “expiration date” and their time will come. For example, as people of faith, we have the assurance that death is not the hopeless end to an essentially meaningless life. Rather, one of the great lessons of Easter is that, as strange as it may sound, in death there is healing. When Jesus appeared to his disciple following the resurrection, He still bore the marks of the crucifixion. The difference was that they were no longer bleeding wounds, they were healed and Jesus was none the worse for wear. And so it is for Giuseppe and all our loved ones: There is no HD in heaven.

But for right now those around Maria are supporting her, and while she is so tired and full of grief that she doesn’t at times know which way to turn, she is not the kind to stay down. The life of a Christian in this world is not about “either/or” but “both/and”. We aren’t confronted with the alternatives of either sinner or saint, or either being faithful or grieving. In both cases, we are “both/and”. Always remember that the opposite of grief is not faithfulness, but rather apathy.

So if you have been praying for Maria, please continue to do so – which if you thinks about it is another case of “both/and”. She is both in need of prayer and already under infinite God’s care. To protect her from total despair, God is continuing to fill her heart every day with fresh hope, and the rod of steel that He placed in her spine means that this time of pain and sorrow will not leave her permanently bowed down.

This loss will not be the end of her, and the testimony of her story is yet another assurance that ours won’t be the end of us either…

In Christ, Amen ☩

A prayer for when you mourn…

“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 wonderous promises. But today I want to bless you especially for understanding and sanctifying our grief. In scripture we see Jesus first weeping at the tomb of his friend Lazarus, and then reassuring the two grieving sisters that in Him there is life regardless of how things look at the moment. And then again, we have Jesus’ reassuring words, ‘Blessed are those who mourn, for they shall be comforted.’ Thank you for the opportunity to experience the grief of separations so we might experience an even greater joy at our reunions. Amen”

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So What’s There to Lose?

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 two weeks, the worldwide Coronavirus panic, has impacted the Porter household in a couple ways. First, my company has been determined to be in a critical industry, so my job is safe. However, it was also determined that I don’t have to be onsite to do my work, so I am working out of the house for the foreseeable future. This week is the first full week that I am home.

The second impact has been to answer an unfortunate question. I have been trying, for some time, to sort out exactly what relationship still exists between Janet and I because it doesn’t take a genius to realize that things are clearly not as they were on our wedding day. As I have shared here before, I have been reading and thinking a lot about what psychologists call ambiguous loss, and I have gotten as far realizing that I am stuck somewhere between being her “husband” and her “male nurse” – two positions with very dissimilar job descriptions. So I have begun trying to understand what I have already lost, and what else the disease will likely consume as it continues to progress.

The first time I really began to understand what HD meant in concrete terms was shortly before we moved from Ohio to Texas and our son came for a visit. He and I were out together one day doing some shopping and I took the opportunity to try to explain to him some of the troubling behaviors that I had noticed were developing in his mother. So I cautiously explained all the things that I had observed, being very careful to include only situations that I could easily justify to him. I was so careful because I was sure that his reaction would be, “Oh no Dad, you must be wrong! Not Mom!”

Instead, what I got was a shrug and, “Yeah, but Ma has always been like that…”

As we continued talking, it became clear that my college-age son had a much better insight into what was going on than I did. He explained to me that when I was away for work she would “make nice” while I was home on the weekends, only to let loose again when I went back to work. It was clear that my son’s memories went back a lot further than her diagnosis.

Eventually I had the opportunity to listen to webinars on the HDSA website that talked about the progression of the disease before the patient is diagnosed. One of the things that researchers had begun recognizing was that while the physical symptoms were typically what drove the patient to go see a doctor, the emotional and cognitive problems could start much earlier, often decades earlier.

The most immediate result of this information was the realization that it was possible – indeed likely – that our two children had never known their mother when she was not exhibiting the effects of HD. That was shocking enough, but as a result of my recent inquiries into what I had lost, I came to suspect that the same might be true for me as well. Perhaps, on our wedding day, Huntington’s Disease was already in the picture, already playing a role.

Goodness knows, in hindsight, there were warning signs aplenty. A friend that has known Janet for years once told me, for as long as she has known Janet there were times when she could be “difficult” due to her temper. Then there was the fact that Janet never liked holding hands while we walked. She said that it threw her “off-balance.” I always took that explanation to mean that she just didn’t like holding hands, but now I wondering whether HD had already started degrading her balance, just a bit.

So if I circle back to my original question, “What have I lost?” And I discover that the loss might not be so ambiguous after all. One of the things that I have clearly lost was a fairy-tale past where everything was “OK” before the disease. I realize I made a lot of excuses for her over the years, such as the time when I explained to the cop living next door to us in Ohio that I had a black eye because I walked into a door in the night. He just stared at me with a look on his face that said, “Do you have any idea how many times I have been told that crap?” But all he said was, “Are you sure that’s what happened?”

Looking back, it’s very likely that the Janet I miss, the “real” Janet that I have talked about so often, never really existed at all except in my hopes and dreams. The real Janet was the person that she would have been had she been able to free herself from the baggage of her father’s abuse. That was the battle I was prepared for and was more than willing to fight. Unfortunately, that was not the battle I got.

Just as she inherited the HD gene from her dad, she also “inherited” the anger. However, that inheritance did not come about through the action a DNA molecule, or even a probate court. Rather, it was passed on through an endless series of assaults, such as being slapped across the face multiple times because she didn’t know what page of the missal a particular prayer was on, or being verbally derided for not knowing what country produced cinnamon. And if that load wasn’t enough, when the HD began to manifest itself, she got new anger of her own. Anger about a world out of control, anger about failed expectations and unfulfilled promises. Every day now, anger piles on top of anger to create an unstable emotional tower that is doomed to fail when it can no longer support its own weight.

So where exactly does that leave me? What I’ve lost is a fairy tale. What I’ve gained is a large dose of castor oil-flavored reality. The “smart money” would probably tell me to cut my losses and get out before it gets worse. The only problem with that advice is that I have never been particularly “smart” in that way. In point of fact, I still believe in such quaint and corny ideas as integrity and keeping your promises – even when the only thing left of the original relationship is The Promise.

Consequently, I will for now let “husband” fall to the side and find fulfillment in my new position as “male nurse”. So should I consider that move a demotion? No, not really. You see my core desire has always been to give Janet what she needs, and she doesn’t really need a husband right now, what she needs is a really good nurse.

In Christ, Amen ☩

A prayer for when you are a little slow…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for always knowing and providing what the cosmos needs. But today I want to bless you especially for truly understanding what is needed in my world. There are so many times that it feels like I am slow to understand hard truths, but then I see that it’s just that You made me idealistic and hopeful. Thank you for making me who I am, and using me just that way. Amen”

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Getting Ready for the End

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

A prayer for when you are preparing for The Day…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your wisdom and care. But today I want to bless you especially for the promised eternal life that You have waiting for {The name of the person for whom preparations are being made.}. As I work to complete the preparations for their trip home to You, give me wisdom to make the right decisions, and when the day comes for their departure, please fill out home with your holy angels to soothe old wounds and to remind us of the reunion that lies ahead. Amen”

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Reaching Further Out, #2

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

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

In Christ, Amen ☩

01/04/2020 00:40

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

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

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

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

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

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

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

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

Corina

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

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

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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?

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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 ☩

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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”

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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.

Our Wedding Day
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.

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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 ☩

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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”