Dis Ease(ter)

The week before Easter, the week of Passover, Holy Week, was a blessed week, in spite of the fact that dis ease was my constant companion. I have to remind myself to get my head around the fact that dis ease and blessing are often one and the same, although mind you, I am not waxing eloquent in favor of ALS as the path to enlightenment. I just find that the blessings of dis ease are far more important than the symptoms. During Holy Week, the blessings came in three, even though dis ease was all-pervasive. Without the blessings, I would’ve been overwhelmed, but for some reason, just as despair would nudge its way in, here would come love or care or joy in a way that nudged it right back out.

Early in the week came a visit of a dear friend whose parents have significant health issues. We were going to visit to plan other opportunities, but that is not where our conversation went. Instead, there were tears about loss and transition and potentialities and realities. What a blessing this was. Once again, I was brought face to face with the fact that the ultimate human experience is in shared vulnerability, not in matched strength. I know that this seems counter intuitive, for overpowering others with our own strength of will would seem to be the most protected state we can attain. But believe me, that is a lie from which whole economies are built. There is a connection, overwhelmingly human, that takes place when we share our dis ease. Crying about loss, both anticipated and real, connected us in a way that we had not anticipated, and left us with a clearer sense of direction and trust than if we had just planned the plan and executed the product. It was the strength of connection that continues to amaze me in this physical cycling down, that as I grow weaker, I feel the love and meaning through my brothers and sisters growing stronger.

The next day, Ev and I visited with 150 first year medical students at the request of my friend Dr. T, who lectures this group each year. It was remarkable. We joined two other persons with neuromuscular dis ease, one accompanied by his spouse, to discuss symptomology and diagnosis. Had it remained in the physiological realm, I would not even relate the event, but Kathy, the other spouse got the ball rolling by talking with these young doctor wannabes about the human costs of ALS. She told the story, neither asking for pity nor requesting their sympathy, carefully drawing these “first years” in and showing them that her husband and their family had hopes and dreams and disappointments and difficulties. She didn’t complain. She didn’t bemoan her fate. She spoke with the grace that I have seen with so many in dis ease, accepting the gifts and projecting humanness in such clear, cleansing terms. When it was our turn, Ev was asked, “Is there anything you want to add?” She thought for a moment and then said in her quiet, warm Ev voice, “Remember that it isn’t just the person who gets the diagnosis. ALS splashes all over the family and friends and loved ones, and they require your care too.” Her words were like pure rain on the dusty field of minds crowded with symptoms and diagnoses and objectivism. I was privileged to hear them both, and blessed as their words surrounded these medical students with a different form of care.

The following day, Maundy Thursday, brought the monthly lunch with the choir posse. Because Ev was on break, she could also attend, and we had a wonderful hour with friends as we sat together and talked about everything from the upcoming service, to Ev’s and my foray into the medical school. Nothing profound was planned, except the friendship that dis ease inspires. And this friendship was recapped on Sunday at our church’s Easter service. Our tradition is to invite anyone from the congregation to join the choir in the loft at the end of the service to sing the “Hallelujah Chorus.” Of course, I cannot get into the loft, but Ev and I gamely made our way down and located ourselves as close to the organ console as possible. And all of a sudden, we were surrounded by choir members who left the loft and joined us to sing. I cried. I sang. I marveled at such incredible joy and love. What does one do with such friendship except sing it back? And I don’t care how tired you are of the “Hallelujah Chorus,” it is still a hallelujah.

One of the things that I have always appreciated about Easter is that it is preceded by Lent. Lent is about deserts and dust and despair and curiously, it is about temptation. I know a lot of Christians who ignore Lent so they can get to the “good stuff” of Easter. If you don’t welcome deep reflection, life questions, or feeling slightly off kilter, then Lent is not the season for you, for Lent is being lost in the desert, tempted by easy pathways out without regard to the long-term consequences of their travel. Lent is being thirsty with not a drop in sight, dust on your feet, never quite feeling clean and refreshed. It is the detritus of life, careening through tsunami sand dunes so that the flotsam and jetsam of your existence is etched away and your core is exposed in naked vulnerability. Lent is aloneness, cut off from all things that matter, questioning all things as if they mean nothing. Most of us don’t really like this kind of deep exposure of our essential selves. Most of us are uncomfortable with such vulnerability. It is no wonder we like Easter so much better with its new birth and Spring babies and freshness and gifts. These are much more desirable than stumbling blind and alone with nothing to really quench your heated thirst, and not really knowing what it is you seek.

Last week was Holy Week. For Jews, it was the remembrance of the Angel of Death’s Passover of the children of Israel. For Christians, it was the lead-in to Easter. Holy Week is about passion and triumph and betrayal and friendship and betrayal and triumph again. Passover for Jews underscores their chosen status as people of God. Easter is the culmination of the passion of Christ. Both of these conditions seem extremely relevant to me. ALS has bestowed upon me my own passion, and like the requirements of Passover, this chosen status brings great responsibility, a responsibility nearly impossible to fulfill. ALS chooses you for death, and then requires that you live through it until you die. It makes you responsible specifically to the passion and triumph and betrayal and trials that the Angel of Death might offer, or that you or your loved ones could betray.

The fact is that dis ease is Lent. It exposes your core to naked truth. It touches you, not with the hot breath of passion, but a cooling glance that freezes your center into an anxious knot that must be directly experienced to be understood. Yet, as I said at the beginning, there are blessings in this permanent Lenten state, for Easter arrives, and Passover hallows you in unlooked for ways. They tell you, “Don’t despair.” And I don’t.

As long as friends drop by for tears and laughter, and doctor wannabes will listen to the sagacity of wise women, and posses will not let us sing alone, there are blessings, and there is dis ease.

I choose the blessings.