Last week, in a fit of post–Thanksgiving, pre–Christmas serendipity, Ev and I found our way back to the Mayo Clinic for our quarterly pilgrimage. It was a very different experience for us this time, one of diametric opposites in the same visit. On the one hand was our familiarity with the Mayo drill; we have been making this journey for nearly 2 years as Mayo is where we confirmed my ALS diagnosis. The trip to Rochester has taken on the comfort of an old pair of jeans. We know what to expect, who we will see, and with a few exceptions we know what we will hear–no cures and plenty of dis ease management. On the other hand, after our August Mayo visit, we agreed with one of our doctors that given the statistics on ALS mortality, combined with the documented time since my first noticeable symptoms, it would be appropriate to consult with their palliative care clinic to discuss other management decisions. This would be a new experience, and we had no idea how it would go.
I have committed to keep you up on the so-called progression of my dis ease. Mayo is a very good place to document that progression. No longer am I asked to clench my fists, resist neurologist’s pushing and pulling, sit still to be hammered for evidence of hyper-spasticity, or try to touch fingertips to thumb as quickly as I can. There is no point as the weakness in my limbs is so pronounced that even a simple offering of the hand is an adapted accomplishment. Writing is inefficiently accomplished, causing me to spend longer and longer periods between each of these entries. The bad news is that my ALS progresses and my limbs and torso weaken with the progression. The good news is that my breathing is still almost normal, I am able to chew and swallow and talk, and my sense of humor is intact and well within the boundaries of the mostly inappropriate. As I have come to understand ALS more fully, I am thankful that, at least thus far, I have no frontal temporal dementia (although I may have associates and family who would argue this point). The result of the weakness in my limbs and torso is, more than I ever would have thought, a great deal of consultation about toilets and bathing and eating and sitting and as few transfers a day as possible. I will spare the details. No one has offered any counter narrative to the expectation that my lifespan has been significantly shortened by ALS. Hence, the reason for meeting with palliative care specialists remains.
I don’t want my observations about the palliative care meeting to diminish either the importance or the significance of what we surfaced. Suffice it to say that I suddenly realized that the field of palliative care is much newer than other medical fields, and therefore it probably tends to attract a younger professional. From a traditional medical framework, palliative care is probably a dead-end (no pun intended) for an ambitious researcher/treatment provider. However, with a rapidly aging population, an overly eager system to treat that which cannot be treated and the need to account for life quality, palliative care and end-of-life decisions have taken on far greater meaning for most medical establishments. In this respect, it should not have surprised us that the post residency doctor in training with whom we first met seemed incredibly young to be consulting on such mature decisions. And it really should not have surprised us that the supervising specialist was in his early 30s if that.
I must admit my ageism at this point. It felt funny to both Ev and me to be discussing end-of-life goals with a pair of doctors that seemed like their beginning of life work had only begun. But it was important to get over that, and I think in the long run there were two things that were surfaced in the conversation that were very helpful to both of us. First, I was able to articulate three basic premises that allow me to feel that life is worth the challenges of ALS. It should be no surprise that these centered in family and friends and a sense of continued giving valued by others. But the second thing I surfaced in this conversation was probably more profound. The economics of dying are real. I have no desire to bankrupt my beloved partner’s retirement, forcing her to live the rest of her life with less security because we made the decision to put our finite resources into some symptom-management scheme with very little hope on return. This may seem quite logical, but for me it was a profound realization. I have never been comfortable placing monetary value on random acts of living, happily leaving such endeavors to the actuarial practitioners who design life insurance policies and other such products. So in spite of being a bit taken aback by the age and life experience of our doctors in the palliative care unit, the result is one that will help to inform much larger decisions that are coming in the near future. We agreed to go back; a beginning of sorts of a new chapter in managing dis ease’s progress.
This focus on progression and management seems appropriate to me this week, as we are in a season of progression, from prophecy to birth. This week will be my second anniversary since diagnosis, my own Advent into dis ease if you will.
Advent, New Year’s Day on the Christian liturgical calendar, a time for rebirth and prophecies and holiday luster and symbolic representations with multiple and oppositional meanings began on Sunday. In its common usage the word advent means beginning, coming, arrival. But the season of Advent is confusing. Its bifurcated musical traditions are instructive as they careen back and forth between constructs of saccharine consumerism, holy mysticism and all things in between. Its liturgies of consumption are fed and watered and fertilized and shouted from every media mountaintop in the name of commerce, but its prophecies portend a far different intention.
Advent now is a time of prophets and profits, heralding a future of highways made straight, not just tamed by Jeep and Chrysler and their ilk. Advent’s original apex–the birth of a child, disenfranchised by poverty and illegitimacy, heralded by singing angels, announced by the cosmos–now barely holds a candle to the liturgy of the National Football League’s regular season, brought to you on Christmas Eve to ease your pain and fill the dis eased recesses of your soul. And in spite of the wise counsel of so many financial experts, we cycle into holiday debt barely paid off until we begin the cycle all over again in vain attempts to push back the darkness and express the inexpressible through gifts as prone to exchange as acceptance.
Oh, and don’t forget the nativity tableaus brought to you by Santa on the stable’s rooftop. It is an iconography meant to prey on the dis ease of humanity, whether it be a nagging feeling of disquiet or ALS.
Dis ease begets advent over and over again, a progression in and of its self. Although dis ease named my disquiet in the Advent season, I didn’t realize it was its own prophecy, visions foretelling numerous variations on ALS’s progress and loss. It was a beginning, a coming, an arrival challenging me to reinterpret the meaning of the old prophets and insisting on the need for new. It caused me to change my frameworks not just for the season of Advent, but for the advents each day brings in its own tableau of a quieting life.
My advent anticipates a surety of ending, a timeline shortened by dis ease, with just enough mystery to keep me hanging around to see it through. I have learned Advent’s liturgies and rituals in comforting familiarity. I can predict with great accuracy its prophecies and messages and admonishments and yet, still be surprised by what is to come. Advent inflicts dis ease with the understanding of how human dis ease must be. Yet it insists we contemplate how inhumane and cruel life would become without dis ease’s gifts of growth. It does not matter that we humans have confused the season’s intents, nor does it matter if we make the wrong choices. What does matter is that Advent consistently offers new chances, new challenges, new choices from which we can shrink away with fear or we can embrace with joy in life and death to come.
And just like Mayo, it offers no cure, but excellent dis ease management.