The weight

An attempt to explore caregiving in a rough draft

Before we begin…

When it comes to taking care of another person are you more Nurse Ratched or Mother Theresa? How has caring for someone else or receiving help from another person affected you or the way your life has unfolded? 

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Reader Advisory

I am feeling my way with this one. I believe, in fact, that what you will be reading today (if you choose to continue) is a rough draft of one or more essays I would like to write someday when I’m more alert, less tired, when I can face myself honestly and openly and care less about what my loved ones might think. 

But who knows if that day will ever come? So, in opening, I would like to say to my family and friends that this is not about you. Or at least it is not about any of you specifically. It is, as with many pieces I write, about me. On the other hand, I could not write it without you. 

You’ll see what I mean. 

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It starts with an accident. Two really.

On New Year’s day in 2007, I went for a boogie board ride and wound up in the ER strapped to a stretcher in the new custom-made wetsuit I’d gotten for Christmas. Even though I’d walked out of the ocean after a wave sent me head-first into the hard sand of the beach, my back bent so my feet were next to my ears, I’d heard an ominous crunch at the base of my neck. The  paramedics on the scene held my head and told me to stay still until various imaging devices could determine if anything was cracked or broken. Turned out, I’d herniated discs in my neck and spine which would take over a year to heal and would require a minor surgery along the way. 

I mention this not because I like reliving that moment but because a little over a week ago, my husband broke his collarbone. He is unable to drive, unable to sleep lying down, unable to sneeze without shuddering with fresh pain. He will be okay; this will take time but he is already doing a little better, and things could have been much much worse. We are grateful for this. 

In 2007, my husband had to help me dress, take me to the bathroom, help me sit down, and help me stand again. He had to cook for us a lot of the time, clean, drive, interrupt his work, take me to various appointments. Since my husband’s accident, I’ve had to help him adjust his sling, find shirts that he could wear, and do a million things that he is used to doing and prefers to do by himself. Meanwhile we both replay his accident over and over in our brains. He goes over and over the steps leading up to it. I see his body lying on the concrete and that moment of fear, loss, and denial. 

These two periods are not the only times we’ve had to take care of each other or someone else we love. There was his cancer, my dad’s dementia, serious illnesses or incidents that have shaped the lives of friends and our children. We’ve learned what everyone learns sooner or later: the question is not if something is going to happen but when. 

The next question becomes: how to respond? Nothing puts my character into sharp relief like giving or receiving help. It’s not always pretty. 

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The physical tasks that come with caregiving are easy enough. Even when my body seems to be spent, I can always find the energy to do what needs to be done. The truth is that I find this type of caregiving seductive, almost addictive. I love the clarity, the sense of purpose. I love being useful in a concrete way. When I am useful to someone else, I feel more sure of my place in this world. Even if I never finish this novel, I tell myself, at least I am essential to someone else, something larger than my own desires. I am a good person. 

Am I though? 

Am I being a good person if I am simply doing what I signed on for? And is there a dark side, or at least an ulterior motive, behind signing on for those obligations in the first place? 

Throughout my adulthood, I’ve chosen to bind myself to other people: a son, a spouse, my siblings and extended family, my friends. When confronted with the choice to have a more unfettered life, I have gotten dogs. I seek out the weight of obligation and commitment. It’s as if I need that weight even though at times it feels like it could drag me under.

This week, my best friend told me why cooking, bandaging, washing, anticipating, soothing, making, lifting, hauling, making arrangements, and all the other things involved with caregiving were so compelling for her. “It takes me away from myself,’ she said. 

I heard a click within, as though she’d aimed the beam of a flashlight into one of my dark corners. The notion of escaping through caregiving was especially true when I was younger and the self I wanted to escape from was so much less formed and so much messier. 

It seems to be less true now, a discovery I made this week and registered with some surprise. I am not seeking escape from myself. If anything, I see this work as an essential part of what I bring to the table. I want to cement the closeness I feel with my mate, to reassure him that he can count on me. Perhaps I want to reassure us both.

I’d forgotten how caregiving, an intimate act, can create distance between the helper and the one who is helped. When I was in pain in 2007, I knew he could not know what I was feeling, not exactly. When I hear him swear with frustration or watch his face go gray with pain, I can only guess at what it feels like. Each person’s pain is their own. Each person’s path to healing is his or her own. When I help, I seem to take something from him even as I am trying to give him something. I think back to my accident and remember feeling oppressed at times when my husband had to help me dress or made me realize I could not drive. 

The other day, my husband was looking ahead to his next doctor appointment and told me not to worry about taking him. He’d take an Uber so I could work “undisturbed.” I interpreted this as a rejection of my assistance when he still needed it. Back in 2007, he brought a bit of food to my office where I was alternately standing and lying in front of my computer, attempting to finish a consulting job. It was the perfect snack: a little dish of olives, celery, carrots with olive oil drizzled over it. I loved it. At the same time, I felt helpless and diminished for reasons I do not understand. I’m guessing it was spillover from the helplessness and diminishment I felt from the injury that seemed I thought would be part of me forever.  

We are both smart people with a strong urge to protect and take over. We know each other extremely well and, at the end of the day, trust and respect each other. There is no other way we could cope with the flashes of fear, anger, the tug for control, the fatigue, the gratitude, or the helplessness we’ve both felt over the past couple of weeks and back in 2007 and many other times when one or the other of us has been brought low. 

We do laugh a lot even if it is a little on the dark side. I don’t mind that he calls me Nurse Ratched. Really. We are very aware of how lucky that we’ve gotten this far relatively unscathed and, because we have each other, we don’t have to go through these things alone. We are joyful in our relief that the worst that could happen did not happen.

Still, there have been times when the weight has felt very heavy, times when I don't feel at all like a good person. I draw strength from the notion that all this is temporary. I find myself wondering how people do it when they are confronted with a lifetime of caregiving or receiving that they may not have signed up for. I’m thinking of the military spouse married to a veteran with a traumatic brain injury or multiple amputations. I’m thinking of of parents whose children will always need assistance.

There is a man in our neighborhood who takes his disabled daughter in her wheelchair for a run. He has been doing this every day for as long as we’ve lived here. She has gone from young girl to solid woman. He has gone from running rapidly to walking in a knee brace. Still they keep going. I don’t know if I could do what he does. Maybe he didn’t know either when it all started. Maybe his decision to care for her is something he has made every day since she was born. 

I need to stop now. Writing about this is like opening a box of writhing snakes. There are so many twists and turns my brain wants to take. I want, for example, to explore the word burden – that thing that so many of us say we don’t want to be especially to those we love. I’m not sure I feel that way. Who gets to decide what constitutes a burden and what doesn’t, the caretaker or the patient? I wanted to do a better job of looking at how a change in health alters the dynamic in a relationship but also reveals whether the beams supporting it are solid or rotting away. I wanted to talk about the moments of grace that come out of nowhere. I wanted to share how power washing a deck and making dinner and finding the right sling for my husband’s shoulder helped me to channel one of the characters in my novel-in-progress. This helped me feel as though I were still writing even when I could not put many words on the page. 

If you have any perspectives on caring for another person or being cared for, please share them. What did you discover about yourself? What did/do you take from the process? Did you find stories or writers who helped you get through?

Two writers who make me think about caregiving and love in all their forms

Lyle McKeany

‘s daughter Em has cerebral palsy. Since birth, she has required special care not only from her parents but teams of specialists. But mostly her parents. Lyle writes about this and other things over at Just Enough to Get Me Into Trouble. He writes with humor, insight, honesty, and heart. Here is his post from June, A Letter to My Daughter.

“Tomorrow is your fifth birthday.

I’m not sure if you realize this quite yet, but your smile can do some serious damage.

It can open doors for you.

It can get you the things you want….

As you grow up, your wants and needs will become more complex. It will be challenging and you’ll need to work hard to be heard in the way you want to be heard. I want you to know that I will work just as hard to understand you too.” -

Lyle McKeany

Elizabeth Aquino

writes with ferocity, wit, and poetry about caregiving, the healthcare system, art, books, and her daughter, Sophie, whose seizures have shaped their lives. I read Elizabeth’s Substack for the inventiveness of her prose, for her insights, and to be reminded of how terrible and beautiful the world can be all at once. Here is a piece called “Burning Questions I Have” which lists a lot of questions we all have or might have, if we’d had to spend forty days in a hospital with our daughter. 

“What is hold music really? Is it music? Does anyone enjoy listening to instrumental Foreigner? Is it manufactured like canned laughter? Is there a creator? Is there a way to turn it off? …

Why is the language of the American Medical Industrial Complex similar to that of a large corporate hotel chain and when not that, more like an early 20th century rooming house? For example, why does the Explanation of Benefits list the hospital charge for Sophie’s literal bed and hospital room as “Room and Board”?

Why does the tiny little mother mind™ conjure up a small garret, a neatly made single bed with a neutral throw, a chest of drawers on which is a basin and pitcher of water, a round or perhaps oval rag rug, and a dining room downstairs where fellow boarders gather at 5:00 for corned beef and cabbage with a weekly charge of $20.00 instead of a beige and metal square, crowded with equipment and broken clocks, computer screens and clattering, hissing machines, fluorescent lights, tubes and wires, giant receptacles for medical waste and linens, a dirty window and a constant stream of humans at $22,000* a day?” -

Elizabeth Aquino

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That’s it for this week. Thank you for letting me experiment with you this week. Next week we will be exploring audio books. I’ll share some fun insights from a member of the Spark community who has narrated a number of books. I’m looking forward to getting back on track.

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