Lately, I’ve been thinking a lot about fear.
Since the seizure, Mark isn't able to do pool therapy because a repeat seizure in the water would put him in extreme danger. And so we've been on land at Neuroworx for the last two weeks. The problem is the buoyancy and support provided by the water that aided his progress toward finding balance are hard to replicate out of the pool. I don't know if his blog posts have made it clear, but he doesn't have awareness of the left side of his body in space, even with the tingles of sensation he experiences in the affected limbs. In his mind, his arm and leg don't register as present. So his center of balance has shifted dramatically to the right; running vertically from his right foot, through his nipple, to his right eye. And accordingly, most of the ambulatory movement he does favors the right leg.
When his therapists try to help him center his weight over both feet it feels to him as it might to you or me if we stood on a cliff with our weight evenly distributed between the right (on the ground) and the left (in midair). Our minds trigger a fear response when there isn't solid ground beneath one of our feet. We would experience the sensation that wakes us with a jolt from sleep when we dream we are falling. And yet, the therapists ask Mark to stay in that position, to feel that sensation even when he grips the bar for support and begs to be able to sit or shift his weight to the right again. That instability triggers a fight or flight flood of adrenaline in his brain, that twice this week resulted in explosive fits of rage entirely out of character for my husband. Even after grounding himself on the right, he rants at the therapist’s insistence that he remain unsteady instead of moving toward a place that his brain tells him is secure. I place my hand against his chest and prompt him to feel the objects around him and the floor beneath him until he is able to calm down against the surge of anxiety. Mark immediately feels ashamed at his reaction; he turns the criticism inward and beats himself up. It’s been a heartbreaking week, even though he tries to verbally recognize the work he’s put into each session.
I confronted him Monday after the first outburst. I said, “You know how faith makes no logical sense? And we do it anyway.” And he nodded, because as he and I have discussed ad nauseam there is no verifiable proof of God’s existence. There is no empirical evidence to which either of us can root our belief, nor is our personal experience with what we classify as deity quantifiable or reliably repeatable so that we can share that evidence as reason for others around us to also believe. We understand skepticism. We get fear of unreliable proof. We get the mountain of evidence to the contrary. We also get the fear of looking like fools because we both are theists, both devotedly LDS.
I am not positing that the act of walking without proprioception is evidence for God’s existence. But in relating the challenge to him this way, Mark is forming the mental connections required for him to stand on both feet—it’s the same kind of leap into unresolved tension or cognitive dissonance. And he must learn to find comfort in the absence of security that we sometimes feel in our religious faith.
I don’t know if I could do what he’s being asked to do. Even with proprioception, walking is a repetitive act of aiming at momentary balance over a point in space we intend to entirely overshoot, and then toppling over on to the other foot that again momentarily carries us past yet another point in space. Walking is precarious, as is living personal faith or belief.
Which is perhaps why I try not to judge those who are areligious or whose experiences have lead them down different paths of faith. I’ve wandered around on unsteady legs through shifting definitions of belief and reason for forty years. I’ve found balance within my body, even though it is sometimes unsteady. I’d never be so bold as to impose my personal experiences as the only possible personal experiences. All I can do is ground myself in what I’m trying to accomplish and the relationship I believe I have with a God and a Savior I choose to believe in, even when it’s messy and I’m scared or angry. Even when the world and my surroundings seem disorienting, or make little sense to me logically. I’m not always happy with the struggle. But it’s the struggle I love. My husband and I hold each other up in this way.
What we fear most is harming others. I never want to be the person responsible for attacking or damaging the personal growth of those stumbling through their own obstacle course of development. I tend to make room and allowance for others’ beliefs and experiences both because I respect their humanity and because ultimately what I see in them seems to me infant glimmers of divinity. And everywhere around me—in my faith and without—there are testaments to charity, goodness, and truth. I readily admit, it’s hard for me not to be in love with the whole world. And so I am often a permissive parent and friend rather than a proclaiming believer. Perhaps at times, this might be read by others of my faith or those outside of it as non-commitment. Nothing could be farther from the truth, and if I am at fault in my passivity that is something I’ll have to reckon with my God. But for now, my husband’s tightrope act has me reflecting deeply on my own. I haven't made sense of faith yet, but I'm working at it, one step at a time.
Mark believes he will walk. I’m not going to stand in his way.