Caregiving has a numbing effect, the way it requires all of one's energy, all one's thoughts, demands singular focus on the now. Mr. PNU's processing capacity is compromised by his brain damage, mine is compromised by caring for him. I realized that today as I sat in my front room drawing blank after stuporous blank at every question posed by VideoWest curator and interviewer, Doug Fabrizio. I have so little opportunity to distance myself from the present that I'm nearly unable to derive meaning from the experience.
But I've been pondering all day, and I think I know now how to respond.
Give me an idea of the average day.
I wake early to squeeze what personal time I can out of every morning. In these hours I must fit reading, exercise, daily hygiene, and a few light household chores. From the moment my husband wakes until he goes to sleep I'm at his side, keeping him active every day. I keep him fed and clothed. Maintain the business and financial side of our life. I do it all. If he's walking somewhere, it's because I've planned ahead, helped him stand, supplied cane, and except for therapy I'm walking beside him to steady him if he teeters. If he teaches a class it's because I've contacted his colleagues to arrange schedule and teaching opportunity. I'm there to lend support when brain damage inhibits his abilities, to pep-talk him through anxiety spells from hour to hour, to help him communicate with his colleagues when he's slipped into passivity. I remind him of upcoming tasks and plans, keep his calendar, get him to appointments, take him to activities, support his religious activity. Sometimes I forget how much I do because I am the director and most spectators are watching my husband after I've given him the cue, wheeled or walked him onto the stage, called "Action!", and captured the footage that his fans adore. I'm done feeling despair over dissolving into the stroke recovery lifestyle, but I still often feel just as transparent to many onlookers. The three days a week I get scheduled time for myself are always overbooked with other areas of responsibility and thirsty selfhood that I am unable to maintain while I'm steering Mr. PNU's boat. Those parts of life—parenting, poetry, my friends, faith activities, academic projects—are each terribly underserved. I'm exhausted much of the time, mentally and physically, so that my free time is spent sitting somewhere quietly, staring off into space. Mr. PNU is in bed by 9 or 10 p.m. Some days I'm asleep next to him. Some days it takes me hours to lose consciousness.
You'd only been married six months when this happened. You must have thought at some point that you didn't sign up for this, it wasn't in your plans.
Yes. Early on. Three months or so after the stroke when I was scrambling to redefine the marriage post-stroke with a husband whose newfangled passivity left me alone, vulnerable to others' expectations, and feeling very out of control in my new life situation. It was terrifyingly threatening. I left for a week with my kids. I thought about divorce. I also felt I may as well stab myself in the heart if that were my final decision. I came back, wrapped myself around him in his nursing home bed, and I've not thought about ending the marriage since. I do wonder about eventual decline and the end of his life. I worry about having to put him back in a nursing home at some point. I wring myself out stressing that dementia will take hold of what is left—he has noticeable memory lapse from time to time—and that I will dissolve into non-recognition. I'm a late acquisition. As memories go, the most recent are first to depart.
But even before that, I also wonder what would have happened if he weren't married to me? What if I had left? How long might he have lived? How might everyone else have responded differently? Why didn't they respond that way even though I didn't leave? I'm still here by choice—not obligation—but perhaps my role is seen as obligation by everyone else. I don't know because very few people actually talk to me about how they are processing my husband's stroke. I think it's a taboo subject to some extent. My mother and father-in-law were heartbroken for Mr. PNU. They are both deeply grateful for my work and for how I love their son. I know that. But I still wonder if the entire family wouldn't have simply collapsed over this tragedy if I weren't here to do the work necessary to salvage a life for my husband. Or if he would have been left in the care of strangers.
Neither of us signed up for this. Neither of us chose this. But I did choose him—personality changes aside—and I keep making that choice every day.
What does it mean for you to care for your husband, for you to give up your plans?
It means struggling for wholeness, and for a definition of wholeness. Am I whole because I'm completing the parts of him that are gone? Am I whole when I'm able to take an hour to myself? I haven't worked out those details yet. But I didn't fall in love with my husband because of the plans we'd made. We made plans based on the love that is the foundation of us. If that foundation can be protected and maintained, the plans on the top can change almost indefinitely and I won't feel like I've lost life's vital elements. This struggle is the hardest task I've ever confronted. It changes me every day, demands that I remain malleable and useful and selfless. We didn't chose this path, but the point of life is the path. I tell Mr. PNU that our life together is an adventure in learning what we can do. If discovery is the plan, then I'll never be eaten alive by feelings of failure over lost expectation.
Sex. He once stopped you mid-act and asked if your love-making were charity sex. Do you remember?
Yes and no. I've never made love to my husband out of pity. But I worked so hard to give this aspect of his life back to him as early on as I could, and every step of the way took extreme patience and love. If those two things aren't charity, I don't know what is. I recall moments where, because I wasn't expressing my own needs, my feelings were hurt, or he expressed self-doubt and that hurt my feelings too because our sex life and its continued health was so precious to me. Now, a year later, though highly unconventional, it's great. We've refined new approaches and techniques. In some ways, because we must trust each other explicitly, and communicate more openly, it's better, more thrilling, more satisfying, more deliciously sacramental than the six months of astronomical sex before the stroke. I relish his body. He relishes mine. Salvaging our sexuality after stroke definitely contributed to the continued wellbeing of the marriage, and to the wellbeing of each of its participants.
When did it sink in, what life after stroke meant?
February. I finally confronted the grief that pre-stroke Mr. PNU was not going to return, and that I was beginning in some regard to forget who that man was. My lack of anything to show for my extensive investment in education slammed doors of opportunity on me with alarming effect, and I shut down, left Facebook, withdrew from my friends and supports, hunkered down in my winter of disillusionment. I grasped the ongoing, uncertain sacrifice that accepting the role of caregiver dictated, understood that I would lose part of myself in the tradeoff of sharing the remainder of my husband's life, and began to feel as though the two of us somehow bled together into a marital entity, both completed by and also greater than the sum of its parts.
Tell me the love story.
One night, during the four months we dated, we were on the phone an hour apart, both of us outside on the lawns of our respective culs de sac looking at the same sky. We couldn't stop gushing and sighing. I sometimes laugh at how drunken on hormones we both were; the dopamine was so overwhelming still. I asked Mr. PNU to look deep into the darkness between the pinprick points of light that usually catch lovers' attention. I told him that I thought the sheer magnitude of our love then was enough to fill that space—in between the stars. That phrase "between the stars" has made several appearances in our relationship since, like a signature marital slogan. And I still feel like that for him, believe it or not. Sure, the champagne bubbles in my belly aren't as profuse, but I look at him and feel myself go soft all over again at the core. And I also believe in the last year we've graduated from the Milky Way cluster. Now we need the multiverse.
We never know when our time in our bodies may come to a close. I don't want to live with regret that I didn't suck the joy and the potential for beauty and love out of every moment I have to spend with my husband. No amount of work will keep him here when his time is up. I don't know if I believe in ghosts, but there's no better way to be haunted than to take a human being you love for granted only to lose them. I've come to understand the necessity of surrender in this life. And though I'm not finished, I'm learning to allow the love and the gratitude for what time I do have to soak into every corner of my experience. I'm learning the pairing of the bitter and the sweet.