We are a culture that values mastery and control, that cultivates self-sufficiency, competence, independence. But in the shadow of these values lies a profound rejection of our human wholeness. As individuals and as a culture we have developed a sort of contempt for anything in ourselves and in others that has needs, and is capable of suffering. ~ Rachel Naomi Remen, My Grandfather’s Blessings
What started as a run-of-the-mill ulcerative colitis flare in late May of 2016 was to turn into a life-threatening health crisis that lasted all summer. As this crisis began to unfold, there were many challenges—fear, exhaustion, physical pain.
But near the top of the list was a subtler, ever-present concern: the knowledge that I had ceased to be useful and had become a burden.
In the first couple weeks of the flare, I could only barely get through my job each day. Weakened and exhausted by frequent trips to the bathroom, I was dehydrated and losing weight and in almost constant pain. On evenings and weekends at home, I retreated to the couch, curled with a heat pack pressed against my belly. My husband Ron did everything for me.
There was so much to do. Wearily, steadily, he cooked my special food out of my macrobiotic cookbook and brought it to me on a tray, then cleared my dishes and washed them. He reheated my heat pack in the microwave, drove to the pharmacy to pick up my meds, brought me water or special macrobiotic tea, and texted updates to my family. He fed the cats and changed their litter, sorted through the mail, mowed the lawn, vacuumed the house. He sat with me holding my hand when I was scared. He read to me.
Through all this, he looked focused, determined, earnest—and totally exhausted. It made my heart ache.
“I want to help,” he kept saying.
“Thank you,” I said. “I’m so sorry.”
Others were helping, too. Especially my coworkers, who were stepping up to help with my projects. Each time someone offered to help me, I was overcome with a rush of gratitude and relief. The reins of life were beginning to slip from my hands, but others were appearing on the sidelines, jumping in to grab them before everything fell apart. It was all deeply humbling.
Still, I hated to be a burden and I fought to keep control of what I could, only asking for help when I felt I absolutely needed it. One day, this strategy came to a head.
I’d spent three weeks flaring severely with no end in sight. Today my task at work was to photograph a stream-restoration project, which had been installed at the mouth of a creek that emptied into the Willamette River in a woodsy ravine. I dreaded the task. In the woods, there were no bathrooms. I stuffed my pocket with toilet paper and hoped for the best.
Clambering through the brush on the way to the project area, I discovered that my legs were so weak I could barely make the short overland trek. I frequently stopped to lean against trees, and my legs shook as I sought footing.
When I found myself climbing over a giant log next to the creek itself, I suddenly realized how reckless it had been to carry out this task in my weakened state. Below me, past the end of the log, the creek roiled and churned, deep and fast and cold. Falling in could be a death sentence. The water’s depth was over my head here, I was too weak to swim, and I could easily be washed downstream into the larger river.
It hit me all at once: my reluctance to ask a coworker to do yet another task for me had put me into real physical danger.
I managed to finish my task. But the incident shook me; I vowed to start asking for help more, even if I felt embarrassed.
The next morning, I hauled myself out of bed and got myself dressed with great effort. But by the time I got to the front door, I was too winded to put on my shoes—I’d become so weak that even walking through my own house was too much for me.
I contacted my boss and said I’d be in later, but later that day, my limbs still felt leaden. I stayed home. The next morning, I felt no better. I was forced to stop working altogether.
Now I entered a new level of dependence and helplessness. I was at the mercy of my boss, who, thankfully, was sympathetic. He said to take as long as I needed to get well. I was equally indebted to my coworkers, who valiantly took on all my projects despite being swamped themselves.
I also needed even more help at home, since by now I couldn’t even drive myself to a health clinic five minutes away for a blood draw. I began calling my parents and asking them to drive me to appointments during the day. They readily said yes.
My utter weakness was forcing me to overcome my reticence. I needed help; there was no way around it.
And as I surrendered to this new mentality, I realized I hadn’t only been afraid to burden others. It wasn’t just about feeling bad for them. It was also something more selfish: an unconscious bias against people who needed help.
I hadn’t wanted to be one of those people. I’d preferred being the helper, not the helpee.
“Needing someone is often seen as a personal failing,” writes Rachel Naomi Remen in My Grandfather’s Blessings. “Needing others has come to require an act of courage.”
I hadn’t felt courageous when I’d emailed my boss that I needed to stay home, or when I’d finally asked my coworkers for more help. But when I read Remen’s words many months later, I saw instantly what she meant. The thought of burdening others had been so abhorrent to me that I’d even put my own life into danger to avoid it. Admitting I needed help must, at some level, have been terrifying.
To be needed feels powerful. Many cultures view generosity as an act of power, and ungenerous people who take more than they give are frowned upon worldwide.
Most societies follow what psychologist Robert B. Cialdini has called the Rule of Reciprocation, where people are expected to reciprocate gifts and favors and are shamed if they fail to do so. As Cialdini says, “Essentially thou shall not take without giving in return.” No one likes a freeloader.
All my life, I’d taken this unspoken rule seriously. Receiving help or gifts felt like going into debt. I had an internal ledger in which I tracked these debts, and I tried to always repay them, whether it meant helping someone who’d helped me, giving gifts when I’d received them, or even just replying to friends’ emails in a timely manner.
But now, with this terrible flare, my internal ledger was rapidly becoming unbalanced. Others were doing far more for me than I could do in return. And because my illness was chronic, I realized with dismay that I might never be able to repay them.
Even after I emerged from this crisis, I would still need far more time and energy than most people need for self-care. My crisis was making that abundantly clear—I could never return to the pace of life I’d maintained this spring. It wasn’t safe for me.
I could probably never take on a lot of extra things at work the way my coworkers were doing. I could never work as hard for Ron as he was working for me now. If I did, I’d just get sick again.
How was I supposed to handle such indebtedness?
As the weeks passed, though, I found myself slowly becoming more comfortable in this new role. There was nothing I could do about it—right now, my role was to receive help. I felt a bit like an infant, albeit one who could communicate exceptionally well. Perhaps due to resignation or just sheer exhaustion, I gradually let go of worrying about reciprocity for now.
Along with giving up my work, I was slipping out of many smaller commitments. I emailed a local immigrant and refugee group that I could no longer volunteer with them, which I’d been doing this spring. I canceled plans with friends and family. I told a close friend she couldn’t spend the night with us on her way through town, even though she would have hosted me at her own home in a heartbeat.
I let go of responding to texts and emails. I let them pile up, let messages languish for days or weeks, or wrote two-sentence replies to long missives from others.
I let go of being an equal or a giver, and for the first time in my adult life, I allowed myself to become flaky.
It was an immense relief.
The hardest thing to give up was being present for friends who needed emotional support. A few friends were in the middle of their own crises at the same time as me. I wanted so badly to be there for them. One friend’s whole marriage and life were collapsing around her, and all I could muster was a text that I was thinking of her. I could not do more. This, too, I had to let go.
As my weeks of dependency dragged on, and the fog of suffering descended over me, I came to realize that my inner ledger would have to change formats. The Rule of Reciprocation could no longer apply to me, even in my marriage.
That was sobering, and it made me feel guilty, but it was how things had to be. There needed to be different rules for me now that I had such a serious illness.
I thought sometimes about the Christian parable of the poor widow’s offering. When a woman puts only two small copper coins into the temple treasury, Jesus calls his disciples to him and says her offering is actually worth a great deal:
Truly I tell you, this poor widow has put more into the treasury than all the others. They all gave out of their wealth; but she, out of her poverty, put in everything—all she had to live on.
Perhaps, I thought, it’s not how much you put in, but how much effort or sacrifice you put in. For now, my text message to my friend was all I had to give her. I hoped it was meaningful in that way.
The Chronic Yogi, an anonymous woman who blogs about living with complex Lyme disease and co-infections, offers a new rule of reciprocation for marriages involving illness. She suggests that, rather than both partners doing 50% of the work, “everyone in a household does 100% of what they can do.” I would read her post after my crisis had passed, and it seemed to provide a solution to my problem at last.
This philosophy will often mean that healthier people do more than sicker people. That may feel unfair, until you see the illness as an external circumstance, not something to blame on the sick person. (I’ll write more about blame in the next post.)
When you understand the illness not to be the sick person’s fault, you realize that this rule is as fair as possible in an unfair world.
Ron is inconvenienced by my illness, and I feel very bad about that. But the truth is, no one is more inconvenienced by my illness than I am. It’s something that happened to both of us, and he and I are sharing the burden of it together.
And this rule can be extended beyond physical, chronic illnesses like mine. Many people have limitations that fall into other categories. Insomnia, depression, injury, cognitive impairment, and countless other afflictions may limit a person’s ability to do an equal share of the work in any relationship.
When we remember that our housemates, spouses, coworkers, friends, and family members all have different struggles from our own, we can adjust our expectations. It’s not always equitable to ask everyone to do an equal share. It’s better to ask everyone to put in equal effort—to do the best they can.
As I slipped into greater and greater dependency and weakness, through my pain and exhaustion I began to experience a beautiful surrendering. It was the acceptance of my role as a dependent, helpless person. The more I embodied this role, the more I discovered a surprising dignity in it.
Elliot Kukla describes a similar process in a New York Times piece called “In My Chronic Illness, I Found a Deeper Meaning.” He points out that when we surrender to our own need of others, we realize there’s no shame in such need:
With great difficulty, I learned how to accept care…We are born needing care and die needing care, and I am no exception. At brief moments in the middle of life, we hold the illusion of independence, but we are always driving on roads we did not build, eating foods we did not pick or raise. Allowing the illusion of my own independence to drop away unmasked a fundamental truth of being human.
Social innovator Michelle L. Sullivan says something similar in her wonderful TED talk entitled, “Asking for help is a strength, not a weakness.” Why should we judge each other or ourselves for needing help? Instead of clinging to the myth of independence, she says, it’s best to focus on each other’s personhood. Whatever our needs, we can all offer valuable relationships and insights.
Struggling through my crisis, between bouts of pain, I offered thanks to Ron, my family, and my coworkers. Reflecting on my new, humbler role, I felt empathy for others who were suffering and needed assistance.
I now understood the unconscious bias I’d had all my life that it’s somehow better to give help than to receive it. Receiving help feels weak and vulnerable, and it is vulnerable. But it’s not weak. Letting go of your independence, and admitting your own vulnerability, takes great humility and courage.
It still wasn’t easy to watch Ron and others making so many sacrifices on my behalf. But once I began admitting, openly and publicly, that I needed others’ help, I felt myself relax into the soft, loving embrace of community.
I no longer needed to feign independence. My lifelong independence had only separated me from those around me anyway. I needed them now more than ever.
It felt beautiful to admit that.
