Megan C.W. is an artist and writer living waaay Uptown. When she’s not on heat-evading adventures with her kiddo, she’s usually writing emails or training to become a Pigeon Town Porch Geezer. “Slow down!”
MOODS, CALORIES, AND SEASONS
When offered the opportunity to write about parenting with a chronic (long-term) illness, I thought I would have much to say after 25+ years of chronic pain and a health condition that has broadly impacted my life. When it came time to write, however, I found myself walking a tightrope of relevance—what I had to say either felt too specific to my own situation, or global enough that it would resonate with most parents, regardless of their health status. Furthermore, I was concerned that my experience of privilege might minimize the daily struggles of other parents who either have more profound mental and physical limitations than I do, or who have not been resourced with the accommodations that enable my functioning.
The more I think about it, the more I am forced to acknowledge that the balance between health and infirmity, mental clarity and fogginess, is precarious for everyone. Whether or not a person readily acknowledges the truth about their vulnerability could be a function of their health experience, though. Everyday parenting struggles are amplified by the symptoms—and social and financial challenges—of chronic illness. Many of us who live with daily or intermittent chronic illness symptoms have a forced awareness of how perilous our situation is, and consequently, that every good day is precious.
Balancing Exercises
For some of us, even our best days are spent waiting for the other shoe to drop; waiting for the next seemingly-inevitable period of being unable to function. Many people living with chronic or episodic illnesses—or those who have experienced a majorly disabling event—intently question the probability that they may lose their ability to work or care for themselves, let alone anyone else. The strain of worrying about what could happen after having already experienced such a loss is especially burdensome for parents with dependent children. Some of us expend daily energy to calculate the risks of particular actions, as if we can strategize our way through conditions within which we actually have little or no control.
My chronic illness is a significant factor in most decisions I make. Leading up to a recent school break for my child, I contemplated the likelihood that the vacation I had planned for us would take an extreme energetic toll on me. On the morning after our return, I was unable to get out of bed for more than a few minutes at a time and found myself prompting my daughter from bed on the steps of her school routine that I would prefer to participate more actively in. My body just wouldn’t do it. I made her a quick breakfast, brushed her hair from my bed, and we settled on school lunch instead of homemade. Lately, my hard days are still better than my worst have been, and as I mentioned before, I know that I am fortunate to be able to work around my symptoms when I have to. So many moms don’t have that option.
It was my decision to travel with my daughter, knowing I would likely end up ill or exhausted afterwards. Would I make the same choice again? Absolutely. My illness equips me with a kind of mortal awareness. Knowing—really knowing—that someday we won’t have each other, or that someday my autonomy and mobility may fail, I enthusiastically savor what we can do now.
Naturally, I question the cost of my illness to my child. She, having experienced the deaths of several of her closest family members within the few years of life she can remember, is also particularly sensitive to the threat of loss. She saw me struggle alone to care for my mom during her final illness and to resolve her affairs when she died, and she has a childlike understanding of adult challenges. My daughter fears that she will lose me before she can care for herself. I tell her stories about how we will get old together and spend long hours on the porch complaining about the neighbors’ raggedy fences. This seems to make her feel better. I do everything in my power to prevent her from feeling like she must care for me, and I enjoy creating a humorous dialogue around the many unknowns of aging.
At the same time, of course, I quietly question the sturdiness of our current version of normal. I worry about how her life will change if my health takes a shift for the worse. By cultivating steadfast routines—nutrition, movement, boundaries, sleep—I aspire towards balance and attempt to demonstrate what it looks like to care for oneself. Some days, I scavenge what I can and hardly move at all.
Carrying Capacity
Chronic pain and exhaustion have significantly eroded my capacity for socializing, and I haven’t done the best job of showing my kid about community building for support. I understand where my daughter’s sense of isolation comes from, especially since most of our family is now gone, and I hate that I can’t resolve it for her. I hate that death took the innocence from her that some of her peers will maintain for decades, and I acknowledge that this is just how it goes. Loss finds us in our time. While we might be rewarded in wisdom for our trials, it doesn’t necessarily make up for our suffering, especially as we are equipped with the immense human capacity to feel so deeply for others.
I try my best to lead our tiny family with an expanded understanding of normal that allows us to respond intentionally to the range of emotions that arise as we navigate physical challenges and grief. There are days when one of us is full of energy (usually her) and the other one is a zombie (usually me), and we have to work together to get through. This requires tremendous flexibility, creativity, and compromise. I defy popular standards of productivity that prioritize consistent performance, day in and day out, because my capacity is fluid. Giving myself and my daughter permission to slow down, permission to stop—without guilt—usually means resisting the unrealistic (and ableist) norm that we should all perform in a certain, consistent way. I don’t resist bursts of hyperproductivity when they happen, either.
To help my daughter build awareness about changes in her own capacity so that she is more likely to prioritize her limitations over society’s ridiculous expectations, I don’t have to model these fluctuations around my own illness. Altered states naturally occur everywhere. I usually tell her that we are animals—we are beholden to moods, calories, and seasons, just like every other living thing. Furthermore, we are humans reinventing ourselves with the discoveries of every new moment. Things change. Today, we live today, and tomorrow, we will live tomorrow.
A Fabulous Liar
My experience of illness has been a fairly quiet one. Outside of a GoFundMe in my 20s to pay for a private doctor to figure some things out when I was having a hard time working, and my closest few people who know some of my struggles, I’ve been careful to project that I’m doing better than I often am. My illness has made a fabulous liar out of me. Or at least it’s made my behavior odd enough that nobody asks. A few nights ago, at one of my kiddo’s extracurriculars, I was in so much pain that I could hardly form a thought when another mother came up to chat with me. Too embarrassed to admit that I was on fire and couldn’t talk, I ended the conversation abruptly, probably signaling disinterest in a friendship that I would have likely enjoyed. So, why keep quiet when I could just be honest and say I don’t feel well? From my experience, it leads to conversations I don’t have the patience for, dismissive comments from people who don’t understand, and endless unsolicited advice about supplements, spiritual practices, exercises, therapy—you name it. Not to mention, there are major social and professional risks for disclosing health issues in many cases.
I’ve learned a lot from a lifetime of illness, but I won’t publicly count my blessings here just because gratitude is more socially palatable than stories of infirmity. Many of us live on a pendulum of OK and horrible days, noticing how life takes on a fresh vibrancy during rare periods of respite from symptoms like pain. Our outlook might swing along the spectrum of self-pity to sagedom depending on how physical and mental symptoms are on a given day. Without romanticizing silver linings, I’ll say that the experience has acquainted my daughter and me with a raw version of life from which we have derived significant meaning.
As life lately seems to become more challenging for everyone, I am starkly aware that certain people, certain parents, struggle exceptionally. I don’t need to know the specific mechanics of their pain to feel a connection to them. We are bound by the same fundamental intent—we love our kids and we are doing our best through fire days and zombie days. And if anything about the whole crummy experience of decades of illness is going to rub off on my kiddo, I hope it will be a sense of compassion for all the people out there who are hurting at the very same time as us.
illustrations by Victoria Allen
