I’m not trying to be melodramatic. We are all dying.
When I had to move downstairs at the end of last February I bought a large screen TV and hooked it up to the Apple device so I could stream movies from my iPad. The first movie in the cue was "The Life of Pi." Even if you have read the book, you need to see the movie. It is visually stunning. I dragged every one into my room to watch it on the giant screen and, as a result, I watched that movie multiple times.
I will save us both from a retelling of the whole tale, but the main characters are a teenager who has taken the name Pi and a tiger who was mistakenly assigned the name Richard Parker. After months fighting each other for survival in a life raft adrift in the open Pacific, the two emaciated combatants surrender momentarily. Pi slides down on the bench with the cat and takes its giant head in his lap and apologizes, “We are dying, Richard Parker."
The question the storyteller throws us at the end is whether or not the tiger was really on the raft or if Pi has made up the story to avoid owning those parts of himself that are discordant with his self-perception but were nevertheless essential to his survival. The man-eating, fierce, selfish carnivore did the necessary things or forced Pi to do things at odds with his values, in order to stay alive. All these parts that Pi has managed to distance himself from are momentarily joined. We’re dying Richard Parker. Did Pi change to survive? Do we all have an inner tiger? Or some other alter ego capable of holding the pieces of self we are not comfortable with?
Another movie comes to my wandering mind: In order to save New York City, the character is asked to think of a scary symbol to be the tangible target in an onslaught from a bunch of spirits run amuck. In "Ghostbusters," the stand-in is the Stay Puff marshmallow man. People in my life have suggested that this archetype may be closer to my hidden nature than Pi’s tiger — the classic “iron-coated marshmallow.” All the soft, gooey, sweet, vulnerable parts of me, those parts I choose not to own, would be in my life raft. I would be floating adrift with the Stay Puff marshmallow guy. Oh wait a minute, I AM in a life raft with a giant marshmallow! So, we’re dying marshmallow guy!
A group of colleagues from my last job came to dinner at the end of September. The group included two friends from Washington, D.C., and one from the New York City office who all came into town to join the local staff to have dinner with me. I was not just touched, I was grabbed in a bear hug of appreciation that still has a hold on me. The weekend before, I spent with my good buddies from New Hampshire. The weekend after, 13 friends rode their bikes together after raising $16,000 for ALS research and advocacy. Another dozen friends waited at the ride’s finish line for team ”Holly’s Heroes” to cross, all in their matching bright orange shirts. A week later, I was joined by 14 Mikula/Westdyks coming in from D.C., N.J., N.Y., Cape Cod and our local family to attend a fundraising dinner for the research organization ALS TDI.
It is now mid-October and the N.H. gang is back. In between, there have been countless afternoon visits, dinners and help getting me into bed. (And you wonder why this blog is late?)
I’m surrounded and humbled by love and support. I know I have written about this before, but I am blessed. I keep wondering when you all will get bored and go away. But that’s just my insecure self rumbling. I’m not one who will ever write the book on what great things I learned from having ALS or the great joy of struggle and pain while basking in the silver lining of a terminal disease. This sucks, and I cannot pretend for a second that it is anything less than a horrible way to die. But you, my friends, have made it easier, more gentle.
I am surprised by how much I have laughed this last year — much more than I ever have, and that includes laughing at myself. I have a greater appreciation for showers, car rides, take-out, dog walkers and, of course, vodka. Some of you suggest that I have changed — that the reason why I’m “feeling the love” is because I have somehow been renovated by this process. I don’t think that’s it. Rather I have, like Pi, sat down with my tiger’s head in my lap and taken ownership of my full self. In so doing, giving the “softer” parts of myself equal time, I have not changed, I have revealed. Perhaps personal crises give us permission to be our full selves.
While enjoying my friends, I’m painfully aware how short my time with you is. It knocks me to my knees to think how I have squandered all of this for so many years. When I find myself in the pity pond thinking how much I will miss you, or the changing leaves, or Nantucket or movies with Mike, I remind myself that “missing,” like wine and ice cream, is for the living.
Conversation is difficult. Talking, while still possible, depends on the time of day and often requires repeating each word. I’m also having more trouble sleeping, and that means Joan is not able to sleep through the night. I am saying goodbye to more of my favorite foods. While all these are extensively discussed in ALS patient guides, I really thought I might be able to avoid these symptoms. I have new machines to help me breathe, and in a couple of weeks I will have surgery to put in a feeding tube.
But the Red Sox are in the World Series, and I got to go to a game. Mike is home for a visit, and the dog, while too big, is nevertheless curled up asleep in my lap. Today, all is right with the world.
The blog was posted originally Oct. 30, 2013.
About the Author
In August 2012, I was diagnosed with ALS. Everything changed at that moment, except the things that really matter. My blog is my record of how I discovered that.
Holly Ladd is a lawyer with a lifetime involvement in civil rights and public health care, both in the U.S. and internationally. She is living with ALS in Newton, Mass., with her partner of 23 years and their son.