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”