For all the chastisement I receive, disguised as words of encouragement and someone else’s certainty that Mr. PNU will pull through and come home, I wonder how many other caregivers feel completely alone in this journey?
I’ve been self-censoring—for myself, for the perceived sensitivities and expectation of others—none of it helpful.
As the twelfth week since Mr. PNU’s stroke arrived this morning, my awareness of this censorship grows more acute. Why am I hiding my truth? Who is above facing reality? And am I protecting others from truth, or am I protecting myself because I know so many well-meaning folk are in denial and I feel compelled to help maintain their self-deception?
I lay in bed two days ago, my head resting on my husband’s freshly-showered chest, and he shook his fist threateningly in the general direction of the rest of the universe.
“I want my life back!”
And who wouldn’t? Twelve weeks ago we were floating through this fairytale newly-wed dream. Both of us veterans of hellish earlier marriages, finally arrived at a bliss that I think we assumed was well-deserved and would justifiably last for decades to come. I believe we privately viewed our happiness was cosmic retribution for the turmoil and loneliness we’d previously known.
We were deeply involved in each other’s projects and interests both current and future. He was working on a paper dealing with the problem of anger in political/religious disagreement; I was working on an essay surrounding the problem of marginalization and “othering” of the mentally ill in the LDS culture. Together, we had plans for collaborative work furthering psychiatric ethics and awareness of mental health issues academically and in our religious community. I was five classes from completing my bachelors degree and we were already discussing the possibilities for grad school. Mr. PNU was preparing to apply for an in-house opening in Integrated Studies. Our kids were thriving. Sure the adjustment to step-family life saw its share of hiccups, but the merger was going more-or-less smoothly, and though we understood that our age posed challenges for conception we were vigorously enjoying the attempt to have a child of our own.
We woke together, showered together, theorized together, took care of children together, worked together, ate together, exercised together, played together, read together. The near side-by-side nature of our existence seemed interrupted only by job-related distances on Tuesdays and Thursdays when Mr. PNU spent his days teaching in the Valley of Salt and spending evenings with his daughter. Beyond that we maybe separated for an hour here or there, and then only because I am by far the more introverted personality in our marriage and I find solitude the best way to write.
We were happy, functional, hardly ever squabbled, quickly found resolution if we did. I remember thinking it was all too good to be true. Worse yet, I think I may have thought I’d arrived.
Perhaps since I’d seen so much hardship up to this point, the God who’d allowed so much abuse, pain, illness and injustice to saturate the first forty years of my life saw it fitting to allow me to coast for the next forty. The fact that I was prepared, even eager to live another forty years illustrates how irrationally happy I was during those initial six months of our marriage. Before dating my husband I was done, spent, completely resigned to fade out whenever the universe called my number. My previous life was so ridden with distress and heartache that my friends often remarked at my capacity for compassion and kindness. I was often asked: How does a person experience that kind of repeated assault, misuse, betrayal and turn out a decent human being capable of raising children who are in turn decent human beings?
I still don’t have an answer. But I do know that for some reason the universe is not done dishing it out, and the concept of arrival is dangerous.
We wish we could go back. But now, twelve weeks later, if we could, what would that life look like? We are both irrevocably changed. Entirely new people than we were upon waking to this slow-motion nightmare.
If fishes were wishes.
Today, when morning came and I noted the hour that twelve weeks ago my husband woke next to me, recited poetry, and then complained of arm weakness I began to panic. For every success story outsiders feel pressed to share with us, there are thousands of other narratives that all bear the label “stroke”. If I have one thing to tell anyone who wants to know how we’re doing, or what it’s like, it is that one person’s stroke never looks the same on another. For all those who insist that we must have hope for full recovery because so and so’s brother’s friend’s sister’s father-in-law had a stroke and he bounced back after just two or three months, I have some advice: Keep it to yourself. Your acquaintance’s experience is not ours and it will not be. While we are struggling through recovery your stories hit us like edicts of failure when my husband still cannot move his left leg more than an inch with extreme effort, when he struggles with toileting, when the “fog” hits and his thought processes slow to a molasses crawl and he is unable to engage the world with the clarity he knew for forty-seven years. We’re happy for your friend, but please, keep it to yourself.
Because we might not get any farther than we have in the past three months, and because no one has the right to rob us the moments that we can find real joy and peace right where we are without full recovery.
For every success story, there are countless others where stroke victims don’t make it beyond the first year because of comorbidity and complications beyond the hemiplegia. They die. I’ve read study after study. A prognosis of only four more years of life after massive stroke is common. My husband isn’t out of the woods. We may just live here for however long he has left. This morning that truth was enough to terrify me. He’s devoting all his energy to regaining what he’s lost, and his body is boobytrapped. I face the real possibility that I could lose him at any time. And what then?
We began texting at 7:40 a.m. And by 8 a.m. I’d poured out my fears, my frantic sense that our time is short, a million texted kisses, and my plea for him to pray for me because sleep is frightening and elusive. He offered to give me a blessing when I arrive at the nursing home this afternoon, and then encouraged me to take an Ativan and rest. We’ll have eternity, he promised. And oh God! I need that promise. I am so overwhelmed at the prospect of renewed loneliness without him. So helpless to the uncertainty of all the months and years ahead. It may seem silly to those who don’t believe. I’m willing to seem completely irrational and comedic in my need for something more, something longer than what we’ve been dealt and however long it will last. The human condition is desperate for healing and comfort. I will follow wherever my suspension of disbelief will take me.
The truth is, because of our continued deep connection, no one gets the enormity of this life change for my husband like I do. And he is the only person who seems to understand my struggle to maintain the angelic support he deserves. We are on this untethered island of recovery, drifting at sea, no shore in sight. We cling to each other. We hold on for the life of the marriage, for each other. We weep together, pray together, laugh when laughter strikes. And then, night after night, I kiss him goodbye, call for respiratory to help him with his CPAP, and I return to the lonely life that bleeds into my periphery once I pull onto State Street and make the drive back to a stranger's mailing address.