What's the Point?
I have Multiple Sclerosis (MS), and that has revealed a challenge that I can barely wrap my mind around: How do you deal with uncertainty? MS is nicknamed the snowflake disease, because it can affect people in wildly different ways. My experience with MS has been relatively mild, but with major ups and downs, as well as an over-arching threat of great disability in my future.
"Maintain hope for good things" was a common message that others gave to me when I was first diagnosed. I sneered at the platitude internally. How dare you assume there's something good that I can ever experience now? Don't talk to me about hope. Hope is for fools.
I think I was both right and wrong. It's a paradox: how do you continue living today, when you have no guarantees of tomorrow? As it turns out, this isn't a problem just for people with MS—it is the human problem. Everyone has to grapple with this at some point. No one is guaranteed a "tomorrow," because there is no way to avoid pain or death.
Although no one is exempt, I think it's easier to push off this paradox almost like a survivorship bias. When I'm healthy and feeling good, I don't put any thought to it, because I live my days in a long, unbroken chain. The past makes the future seem predictable: wake up, exercise, go to work, watch Buffy the Vampire Slayer, fall asleep, repeat.
Last week, however, I was hit with something that broke my chain. I've only had two migraines in my whole life until last week when I had three: Saturday, Thursday, and Friday. After two migraines, I was worried—is this a pattern? Did I just push past recovery too fast? Once the third one hit, the fear really sunk in: Is there something wrong with my brain? Has MS progressed more than I know? Is this something to expect more of in the future?
At times like these, when uncertainty slaps my face, the paradox comes into full view. What is the point of continuing on, when there is great risk of suffering in the future? Why not end it now?
Humanity is Resistance
In the overwhelming circumstances we're facing today from technology to politics, everything seems like it is outside our reach of influence. Everything feels futile—pointless and ineffective, unchangeable.
When I receive responses from my messages to senators or when I see what my country's current administration is doing, I find myself clawing through the muck in search of humanity. It can't be gone, can it? What can I even do? I'm one person against a machine; insignificant, disposable.
Maybe it's a bug or maybe it's a feature, but humans seem to be pretty obstinate when we want to be. Personal experience has shown me that toddlers learn and latch onto the word, "no," quicker than almost any other—and proudly overuse their proclamation of resistance. High school history seemed to highlight oppressors and the resistance with figures like Mahatma Ghandi, Rosa Parks, or the "Tank Man."
There's something about resistance that is deeply moving (ironically). I've been staring at the famous photo of the "Tank Man" and I feel simultaneously terrified and inspired. The fact that a single person could stop a line of tanks leaving Tiananmen Square in Beijing, China is stunning. As far as I know, we have no clue who the man is/was. Was it a normal day up until he saw the chance to literally take a stand? Was he actively looking for the opportunity over weeks and months, or was this spontaneous given the circumstance?
I think there are two principles that can help us in our paradox of dealing with overwhelming systems and grave uncertainty:
- You only have today
- Be a Zimbardo hero
Divination
It seems like we've been conditioned to look into the future more than is healthy or necessary. Our species is a planning species—we can see pretty far into the distance, and that increases the time we have to anticipate things that are coming or happening. That extra time allows us to make plans in anticipation of what we see coming. Technology helps us take this "foresight" from our natural eyes into a mystical realm. We can rely rather well on predictions about the weather, not just for today, but sometimes for an entire week. AI uses its predictions to surface content we'll probably like and engage with on social media. FBI profilers try to identify threats before they happen.
While some of those things may be helpful or even crucial, I wonder if, individually, this expectation of seeing into the future is quite damaging? In terms of my health, MS is pretty unpredictable—I don't know whether I'll have a good day or a bad day, I don't know whether these random, peripheral symptoms are a part of MS or if they're just a manifestation of stress on my MS-weakened body. It's actually been a huge mental health struggle for me as I consider what my future could be like. Every time a new symptom comes or a bad day arises, I feel trapped and squeezed, like the walls are pressing in around me.
Paradox is the isometric exercise of the mind. We want to see tomorrow, but we only have today. Is it possible to put the perspective of our lives in a better balance with time? The paradox is that you need to have direction (a "vision" of the future) in order for the day to be effective in helping to get you there. A year full of days with random actions will not get you where you want to go, but trying to see the future is an illusion that could also derail your path.
My personal approach has been to shorten my view into the future—looking only a few days ahead if at all—and to abandon a sense of "destination." Instead of having a goal that must be achieved in the future, I try to focus on values and compounds (I'm using this word in reference to the compound effect). Values are about who I want to be. Compounds are what I see growing behind me in retrospect: like seeing how CYBORG_ articles continue to be published, or other projects get completed, or emails get sent to senators. It's my body of work (or at least the artifacts of that work). That centers me pretty well on today. I don't know what effect I can have on the world (if any). I'm not planning some grand thing to be accomplished. Instead, every day that is a good day is a chance for me to live my values and work on my work.
It's a kind of resistance.
Resisting the pressures of others' expectations. Resisting the idea that my life is meaningless—because I'm doing what I believe is right and I'm working on what matters to me.
You, too, only have today—anything else is memory or possibility. What you do with all of the "todays" will pile up into something that you can examine after-the-fact. And this isn't just a fluffy cop-out: 10 days of effort put into your values and your personal priorities for action adds up. 100 days of it becomes self-advancing. 1,000 days of it becomes impressive. 10,000 days becomes monumental.
Zimbardo Hero
Phillip Zimbardo was the infamous psychologist behind the Stanford Prison Experiment, in which participating students were randomly assigned to be either a prisoner or a guard. As Zimbardo recounts in the phenomenal book, The Lucifer Effect, the experiment quickly deteriorates into a disturbing, life-like experience of brutality and torture. The thing that struck me the most was how Zimbardo did not take away a grim view of humanity.
Fifteen years ago, I recall watching a video where Zimbardo explained that a hero is someone who does something that anyone could do, but that not everyone does. That was all I needed to hear to construct a new idea—a value—to work towards. I wanted to be a "Zimbardo hero." It's not about doing some superhuman act. It's not about visibility or grand spectacles. It's about taking action when the need arises.
We can do that. We can choose to disconnect from our routine to help someone. We can take action in democracy (or whatever means you have available) to oppose inhumane and dangerous legislation. We can tell our boss that something is unethical.
The "Tank Man" is a Zimbardo hero to me. It wasn't much in terms of actions taken. But it did change the world—here I am talking about it almost exactly 36 years after it happened.
Zimbardo's work throughout his life was all about how the situation can affect whether we'll do good or evil. The same situation can "inflame the hostile imagination in those who become perpetrators of evil" but can also "inspire the heroic imagination in others or render most people passive bystanders and guilty of the evil of inaction." (TEDTalk, The psychology of evil).
The Zimbardo hero acts when others don't. The Zimbardo hero is focused on others, not themselves, so that when the situation arises, they can and will act.
Alchemy
The combination of focusing on today and understanding that everyone—including you—can be a Zimbardo hero is how we can move forward. Yes, we are so much weaker alone—but that's the illusion we should resist. We're not alone.
That isn't dismissing the reality and the deep pain of the loneliness that many of us feel. It is sometimes just so hard to see who is with you; really with you.
Humanity is resistance.
That's how we stop oppression. That's how we make it through another difficult day of health challenges. That's how we continue on.
It hurts. It's scary. It's also contagious. Your heroism inspires more heroism. Your stand moves others to their feet. Your arm of support reaches farther than you know.