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Doing What You Can

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.

One of the challenges that Janet’s illness has always presented is that I am an engineer. In case you are not an engineer, or don’t know one, the thing that you need to understand is that engineers are genetically predisposed to wanting to fix things. In fact, if the truth be told, that’s probably why most of us became engineers in the first place.

The challenge, obviously, is that there is nothing about HD that is fixable. Regardless of what therapies Janet tried or the medicines she took, the eventual prognosis remained the same – perhaps delayed a bit – but still the same. So if physical death is, in the end, inevitable, the only thing that I can see left to do is to make the transition as easy as possible by giving Janet a sense of completion for her life.

You see the thing about my wife is that, above anything else, she has always considered herself a teacher. So the first thing I did was to contact the teacher association where she was a member and let them know about her health. In the letter to them, I first reminded them that she was president of their organization from 1978 to 1980 – in addition to holding down other positions in leadership.

Next, I reminded them how (teaching in the days before computers and official recognition of “special-needs” kids) Janet worked every night to manually develop customized lesson plans (now called IEPs) for each one of her math students. She was also on the association’s Legislative Affairs committee where she worked tirelessly for education reform and even addressed a state legislative committee hearing at the state house pressing for the rights of special needs kids.

By the way, if you are a girl and liked to play sports in high school or college you owe a personal debt of gratitude to Janet. While teaching and coaching girls’ basketball (Janet in her prime was only 5’4”), she worked hard for the passage of a Massachusetts state law that guaranteed equal funding for girls sports – a law that went on to serve as the blueprint for the Title IX federal statute.

A few years after she was president of the teacher’s association, she left public school teaching due to layoffs, but she continued teaching in the corporate world until our daughter Frannie was born with learning disabilities. In first grade, the “experts” told us that our daughter would never learn to read or write, and math would be totally incomprehensible to her. In response to that report, Janet’s teaching job became working with our daughter to get her through school. After working with her mother for 12 years, our daughter graduated from high school with a real diploma (not a certificate of attendance) and for confirmation at church, she read the Gospel lesson.

In response to this information, Janet got a very nice card from the association acknowledging the contributions that she made to the children of Weymouth Massachusetts. The card was signed by the current association president.

I also contacted the woman that was her housemate when we met. The woman, who is Jewish, wrote Janet a wonderful letter and promised to remember her in special shabbat prayers of healing and comfort the Mi Shebeirach (מי ייתן). In addition, a few days later, my wife got a letter from a different friend who heard of her ill-health through the grapevine.

So what was the point of this effort? Simply this, Janet can no longer read on her own so she had me read these letters to her – literally dozens of times. They remind her of the impact that her life has had, and the love that it has fostered. With conditions like HD, the patient can experience a profound sense of depression and hopelessness in the end stages of the disease. The letters and tributes that she has received are physical evidence that she can see and hold in her hand that her life had value and meaning. They are gifts to her from people to whom she gave so much.

But I got something out of it too. After 35 years together you would think that I would know all there is to know about her, but not so. I learned new things about who she was, and the things that she did for others. For example, I learned that her former roommate had been going through a tough patch in her life and literally had no place to live, and without hesitation, Janet took her in. I also learned about how she stood up to sexual harassment in the workplace by a fellow teacher who seeing her drinking from a water fountain and mistaking her for a student, patted her on the butt and told her, “Better get to class young lady…”

Finally, I want to mention that more than 2 years ago, Janet made the decision to donate her body to the McGovern Medical School at the University of Texas to help future doctors learn human anatomy. When she made arrangements for this donation, Janet referred to this as her “last teaching assignment”.

Of course all of that is, metaphorically speaking, the silver lining in a very dark cloud. And a cloud that is, unfortunately, being largely ignored. Despite the propensity of people to mouth the words similar to those from the great poem by John Donne, For Whom the Bell Tolls, I am often reminded of a line from Orwell’s novella The Animal Farm where the fascist leader of an animal revolt (a pig name, appropriately enough, Napoleon) proclaims, “All animals are equal, but some are more equal than others.” Even so, we find ourselves today categorizing and prioritizing things that should not be graded, things like equality and human worth.

At times it feels like there is a world wide shortage of equality and the only way to make someone new equal is to take equality from someone else. However, his presumption ignores the fact that equality is not something granted to you by some law or government, but is a gift that you receive from God the moment that you come into being. In the same way, there are people who will read my words above and become angry because they will interpret my praise of the person that my wife was as in some way diminishing the life and legacy of their loved one – again as though there isn’t enough “human worth” to go around for everyone on the planet.

So let me leave you with this thought to ponder. The kind of Orwellian redefinition that we see in society today has no impact on our loved ones that are gone, and very little on the ones like Janet who remain, but are at the end of their journey. Janet has ceased caring about what other people thought, or thought about her, a long time ago. The question is what impact these changes have on those of us who remain behind – and whether we are going to tolerate them? Maybe we aren’t headed for an apocalypse after all.

In Christ, Amen ☩

A prayer for when you wonder what good is left in the world …

“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 light that You bring into an otherwise dark world. But today, I want to especially bless You for people like {insert the names of those you are thankful for} who carry the torch of Your love to others who are residing in the darkest of places. May the lives have been so enlightened, rise up and call your light-bearers ‘blessed’. 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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Thoughts from a fairly good friday

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.

Perhaps because we have all been confined here at home due to this virus, or perhaps just because things always get worse, this week has been something of a mess. Early on, I had hopes that things might get a bit better because Janet and I talked on the phone with her neurologist and Janet agreed to try an additional medicine (Klonopin) to help with her mood and chorea. Unfortunately, in the 24 hours between the phone call and being able to pick up the medicine, Janet changed her mind again and decided that she would try it, but only after her bowels got sorted out. Translation: She’ll take the new med when pigs fly!

Subsequently, I have spent a lot of time this week crying over losses – a situation exacerbated no doubt by my inability to sleep through the night. The world seems overflowing with things to fret about. Things like dear friends being in peril, from viruses – and other things. Then there are the hopes that seem to revive and then deflate, all within a few hours. As roller coasters go, the one I’m riding now pretty much stinks. The problem of course is that with a physical ‘coaster you get to experience thrills and chills, but in a safe environment where no one is ever really in danger. Unfortunately, with the one that I’m on, people really die. The “thrills and chills” come from trying to figure out whether they are going to die now or later.

People who have been following this blog for a while know that my Janet most-likely inherited HD from her father. Long time readers will also remember that he and I never got along very well. In fact, harsh words often passed between us. Or they did at least until one day when Janet and I went to see him while he was in a hospital towards the end of his life. At one point he got Janet and her mother out of the room on the thinnest of pretenses:

“Mena, why don’t you take Janet and show her the cafeteria in this place, it’s very nice.”

The cafeteria? Really? What could this be about? As soon as they were gone, he called me to his bedside and held out his right hand. When I took it he said,

“I just wanted to tell you that I’m sorry. You are a good man and I am glad you married Janet.”

I thanked him, and shook his hand. After that we sat quietly until the ladies got back from their “tour” of the hospital’s culinary facilities – each of us deep in our own thoughts. A few weeks later, Janet’s dad was dead.

The reason that I am bringing this up, is that this morning, Janet (in a rare moment of mental and verbal clarity) told me that she was grateful for all the things I had done for her, and that I had been a “good husband”. Soon, however, the HD closed back in and I was back to being an insanely huge mistake in her life.

Please excuse the language, but roller coasters are a bitch.

Today, as I write this, it is Good Friday. To modern Christians, it is certainly a strange name for an admittedly strange holy day. It commemorates the death of Jesus on the cross. Especially now, in the midst of a pandemic panic, why would that death, or any death for that matter, be considered “good”?

And what are we supposed to do with Good Friday anyway? We certainly don’t run around telling one another, “Merry Good Friday!” The problem with Good Friday is that the holiday and the name come from a time before we (individually) became the center of the universe. It was born out of a culture where sacrifice was seen as a noble thing – and not at all stupid, offensive or degrading. But mostly, it came from a time when people were able to maintain perspective about the importance of experiences and situations.

In some ways, a lack of perspective may be a uniquely American problem. After all, our mere 250 years of existence is quite literally the blink of an eye in the overall flow of history. Not long ago I was talking to someone from Italy about the virus and my concern for the health of her family. Her advice: “Don’t worry ahead of time. God takes care of things.” In these situations, Italy has the advantage of millenia of historical perspective. Within just the past 100 years, they have had to deal with not one but two world wars that were fought at least partially within their own national borders. Unlike the US, for whom both wars were “over there”. And when the pandemic did come knocking, they did what needed to be done, but didn’t abandon community. Instead they moved to their balconies and had nightly distributed concerts and community sings. They played, sang and cheered for each other because they knew that when this plague passed – and plagues always do – life resumes. So while the loss of life is tragic, only the loss of community would be truly catastrophic.

By contrast, here people are in a tizzy over the fact that 100,000 people could die from this virus while ignoring the fact that this total is still thousands short of the death toll that the seasonal flu racks up every year. To be clear, if the death toll rises that high, every one of those deaths will be a tragedy, but how about a little perspective? Look up the number of people who die from things like heart disease, cancer, suicide or even childbirth. Moving closer to home, what is the annual death toll of degenerative neurological diseases? Although there are arguments over the exact number, some reports show that for Alzheimer’s alone, the US total could be over 500,000. Every. Single. Year.

Perspective…

Another thing that would be nice is to be able to get the facts of what we are going through right now with a lot less sensationalism. The other day I saw a news story that described in excruciating detail (and with pictures!) how right now, all over the world, there are literally millions of medically untrained senior citizens providing the day-to-day care for loved ones with terminal diseases! This revelation might have been earth-shattering to the 20-something that “discovered” this fact, but for many of us, it’s not a revelation, it’s our life. Want to see a really scary number? Research the number of these “untrained senior citizens” (i.e. caregivers, like us) that die every year, decades before our peers. In one sense, this lack of recognition feels very familiar – I was, after all, in SAC (Strategic Air Command). Who knew or really understood what we did either?

Furthermore, consider this very blog. Who in blazes am I to be advising others? I’m just another medically untrained senior citizen who is trying to pass along what I am seeing and feeling and experiencing, and praying to God that I am doing even a few things right. I don’t enjoy flying by the seat of my pants, but what else is there? If Janet didn’t have me, she wouldn’t have anyone.

The bottom line is that we are all amateurs on this bus. We all have things to contribute and to learn. None of us are really prepared for the jobs into which we have been thrust. We all lean on and depend on one another. We all have a dirty job but we do it, even though it often means sacrificing years off of our lives. So perhaps Good Friday is, after all, the perfect time to acknowledge the “good” work we do. But it is also, without a doubt, the time to remind ourselves of a few things.

First, we don’t live in a “safe” world. None of us are guaranteed even the next five seconds. Something could happen before you finish reading this paragraph, and anyone who says otherwise is lying to you. Bottom line: life has a 100% fatality rate. The question is not whether you will die, the question is whether you will live before you do so. Second, this work isn’t about us – that is why it is called service. Consequently, whether we realize it or not, what we do does get noticed. Even without accolades from important people, ribbons or medals, what we do is seen by Someone. Third, we are never really in this fight alone. In addition to the globe-spanning support community that we have created for ourselves, The One who notices, is also The One who blesses, strengthens and sustains us. In the end, that support is our only real source of hope. And without that hope, we are (as Paul pointed out) above all people, most to be pitied.

In Christ, Amen ☩

A prayer for when you feel that the world is on your shoulders…

“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 world in which we live and the protection that You give us. But today I want to bless you especially for the strength and insight You provide to me. It is so easy for me to fall into the trap of believing that I am just a small cog in a very big machine. I know that most of the time, I can’t comprehend what it is that You are up to, but thank you for showing me the pieces that I can understand. Thank you for the courage to continue on when I seem surrounded by darkness and pestilence. I pray, Lord, that You will show me how to be a beacon of light and hope. 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”