My brother is dying. Over the edge I go.
He had a two-and-a-half-year head start on me. He was born part empath, part sociopath, like most of us.
From his earliest days, every dog or cat with whom he crossed paths recognized his beaming sweetness. He instantly became their new best friend.
When he was 6, he opened my cat's jaws and said, "Stick your finger in there." My 4-year-old brain thought, "He wouldn't put that cat's tooth through my finger, would he? No, he's my brother." He just wanted to see if it would really go through. It did.
When he was ten, he dared me to ice skate backward across the pond as fast as I could. Once I hit top speed, he dove behind me. I was a gymnast, so he figured I was good for it. Annoying as hell, but he was right: I tumbled backward, got banged up, but then I was fine. Same winter, with a good layer of snow in the yard, he got me to climb on his back on the sled. We carved a path straight down the fall line, and hurtled toward the barbed-wire fence at the bottom of the hill. He, having a strong grip on the sled, banked hard. I did not. Same reasoning. And again, he was right. Again, I was okay (-ish; less so, my shredded coat).
A year later, he was perched atop the back edge of the sofa, goading me for minutes on end, daring me to punch him. I did. Over the edge he went. I later studied martial arts, but not because I enjoyed punching him that day.
When I was turning eleven, he bet me I couldn't do eleven chin-ups, and cheered me on until I achieved his challenge. I still work out, but chin-ups to match my age is not happening.
When I was fifteen, and I wasn't getting asked on any dates, he became concerned, and so commissioned a research project. He chose an unremarkable kid in my class, who didn't know me at all, to survey some boys and determine what my problem was. The finding came back that I was too weird. No shit; thanks for the news flash, geniuses. Weird is good; I looked for boys who could appreciate weird. My brother later proved himself useful in the dating arena, by informing me that if I wanted something, I had to ask for it. (That was a news flash.)
I'd started college as a music major, but after cycling through music and another few social sciences, I was thinking about switching to math. This would be a radical shift away from my strengths; I told him I was afraid I couldn't do it. An engineering student, he said, "Math is just like any other subject: you have to read the book." I read the book. Two strenuous years later, I dreamed my first answer to a multivariate calculus problem.
I became analytical and resilient, in large part, because of his early influence. We've shared close friends from grade school through college, and throughout our adult lives. We've witnessed each other's career triumphs and tragedies. We've buried our parents together. He carries my history—and I, his—in a way that no one else does or could.
He's the guy who does 500 pushups (seriously) during his morning run. Or did, until the weakness came on, and his chest and arm muscles started twitching, and the doctors diagnosed him with ALS. Two hundred pounds of muscle and function and vitality have withered as he and we have watched, perfectly aware of every loss. No available standard-of-care treatment has anything more than trivial impact on disease progression or survival.
With years of research under my belt from trying to arrest our mom's Alzheimer's, I'd managed to cure myself of my own peri-menopausal mild cognitive impairment. Based on that success, I was arrogant enough to think I could help him circumvent his disease process. From my initial ALS research, I was getting the sense that this was just the mainstream medical research community failing to look under the right rock. My husband and I moved to be with him and his wife. We researched and identified every test, every experimental measure; they tried everything that they could practicably administer. All for nought. The search continues, but years of futile attempts have left us all nearly in a state of learned helplessness, with respect to this disease.
Prior to the revelation of his diagnosis, for the better part of a decade, I had been saying to myself and others in my counsel, that every thought is a choice, every emotion a choice. I knew these things, yet I took his terror as my own. From the moment we decided to move to be with him, I tied a chunk of my self worth to my ability to save him. It all felt like an act of loyalty, to go with him over the edge.
(The anticipatory terror of the disease is bested by its actuality: he is now able only to twitch his right foot, to ring a bell; a machine pumps his every breath, in and out; he is fed through a port into his stomach; and he can no longer speak his love for us, save for the electronic voice that pronounces the words he types, using eye-gaze software on his computer.)
Mistakes. The universe provides no brownie points, and neither he nor I benefit from the suffering I chose. I still believe mainstream medicine's approach to this disease is reductive and inadequate, but that's beside the point: my initial arrogance set me up to perceive myself as failing him. These feelings subtract from my ability to live my life joyfully, or to help him live his.
So how have I been able to break my fall, gather myself, and climb back up?
Embrace my opportunity to be with him as a privilege. Understand my limitations, the reality of his disease process, and that nothing I could do or recommend would stop it, much less reverse it. Accept that all I can do is try to be there for him, and when even just that feels too hard, cut myself some slack, and keep trying. Realize that I too will die; focus on the certainty of that. This practice is what the Stoic philosophers refer to as "memento mori" (trans.: "remember you will die"). They suggest that meditating on your own demise will be liberating, that it will make the present circumstance seem less important or overwhelming, with the realization that everything we experience is temporary.
My practice is a little different: I reflect on the inevitability of death for me, but also for my brother, my husband, and everyone important to me. I take it further by imagining some details of how I will be living my life, or what I will be doing, after they're gone. I've found this imagining to be key. (I know this might all seem warped, but I find it extremely powerful. Will you give it a try, sometime?)
Extending the practice in these ways does a few good things: it imbues me with a more conscious desire to be compassionate; it brings deeper meaning to every interaction I have, with every person, every day; and it gives me insight and confidence that I will be able to persevere, if I choose to. I don't have to go over the edge:
My brother will die, and I will be okay.
(Peace to the Warrior, a wish for the ending.)
(Prairie Idyll, a love poem to our childhood.)
(Entry #3, On Working with Jerks.)