Are You My Mother?
One of the first books we read to our sons was by P.D. Eastman called Are You My Mother? A mother bird, wearing her white polka-dotted red head scarf or babushka as a symbol of family life, leaves her unhatched egg alone in its nest while she flies away in search of food. Alas, before she returns, the baby bird pops out of the egg and looks around for his mother. My little readers/listeners cheerfully suspended their disbeliefs: Of course it’s a little boy bird and of course it knows it has a mother. And, of course, he will hop out of his nest and search for her. They never even considered that he might look for his father.
Anyway, the baby bird plops out of the nest and walks away to ask everyone and everything he meets if he/she/it is his mother. A kitten, a hen, a dog, a cow, a car, a boat, a plane, a steam shovel. At the end, the steam shovel, which the baby bird calls a “snort,” lifts him way up in the air and drops him back into his nest, right when the mother bird returns with a big fat worm in her mouth. “Do you know who I am?” she asks. “Yes,” he says. “You are not a kitten, a hen, a dog, a cow, a car, a boat, a plane, or a snort. You are a bird, and you are my mother!”
Okay, maybe she shouldn’t have waited so long to forage for food that her egg hatched in her absence, but, hey, we still have that last picture of the baby bird cuddling under the warm wing of the mommy bird, her babushka tied under her chin, her eyes closed, her face serene and self-satisfied. Nurturing to the bird mother and her fledgling seems pretty simple: supplying food and comfort and safety. We assume that the mother will teach him how to fly and live like a bird, but the moments captured in the little story focus on the return of the mommy to the nest with her big fat dead worm, her babushka, and her cozy wing.
My own parents made money for the essentials. We had food and clothes and shelter. But nurturing? A wing and a babushka? My mother was a high strung bird with spiky feathers and intense beady eyes, always out foraging. My dad could be sweet and affectionate though he mainly waxed floors for a living, took naps, and raged at my mother. But then there was Shirley, our housekeeper/nanny for most of my grammar and high-school life, a consistent presence for my brother and me, from breakfast to dinner-time every weekday. Shirley was a fat old bird with soft fuzzy gray feathers and mild, kind sleepy eyes. She let me sit on her lap with a tweezer and pluck the black whiskers sprouting from her chin. I set her hair with rollers and then brushed it into waves. On rare days I was home sick, I sat at her side on the couch and watched soap-operas: Search for Tomorrow, The Guiding Light. She carried tea and toast up to my bedroom. She had grown children of her own, of whom I was jealous.
Except for Shirley, I think I mostly raised myself, learning about the world and its social requirements by intently watching friends and their families, learning about menstruation from pamphlets, about cooking from cookbooks. I was no recluse, had friends and loved school, but in my deepest places, I was lonely and needy and sad.
I married at 20, and Steve filled up much of my emptiness. In my mid-twenties, along came these two beautiful babies, 22 months apart. How was I to provide the fullness for these creatures who demanded my every moment, since I was still wandering through the streets asking, “Are you my mother?”
Both boys screamed with colic for at least 4 months, and I did the best I could to fight resentment and impatience, usually unsuccessfully trying to channel Shirley’s serenity. I could have used a few classes in nurturing motherhood. I’m sure that my lack of self-esteem and wholeness affected them negatively; I was still too focused on my own needs and couldn’t relax into childcare, which demands catering to others. What about my career? My time? My space? Me, me, me.
But I adored the boys and as they grew older, I think (read: hope) I gained enough empathy to provide safety, security and support. If nothing else, I liked to hug and kiss. In retrospect, I see that I did get pieces of love from various non-mother people, from the kitten, hen, dog, cow, car, boat, plane, and even from the steam shovel. There was my dad in his more playful moments, dancing around the dining room; Shirley with her big soft bosom and whiskers. But I also ran into a teacher here and there, some high school and college friends, and definitely Steve, who showed me I was someone of value.
Mostly, however, I took care of myself.
1999. Flu shot. CFS.
“I was supposed to figure all this out on my own”
Fourteen years of illness, fourteen years of wandering in the desert, searching even more desperately for deliverance, fourteen years of pleading, “Are you my mother?”
My mother was not only unavailable; she contributed to my misery because her hypochondria and pathological nervousness meant I could tell her nothing. My children had their own lives and dismissed me with, “Mom, you’re becoming Grandma Helen.” And my beloved husband, who was struggling to adapt to this stranger I’d become, took over household chores and responsibilities but felt too overwhelmed to research the disease, to look for explanations or treatments.
I was practically a corpse whose brain and limbs had been pulverized in a blender, with my once caring Dr. Kallich flicking me off her shoulder and other doctors telling me to just wait, I’ll get better; I filled with terror and depression and could neither focus my blurry vision to read without dreadful headaches and nor make any sense out of words anyway; and I was supposed to figure this all out on my own. Understand. Make plans. Seek solutions. Open to page one.
I was and still am convinced that if our roles were reversed and Steve were the patient with this severe mysterious illness, I’d be Googling my days away. I’d be in the library and on the phone with his doctors and with whatever resources I could find. I’d naturally and deliberately walk with him into the doctor’s office on all visits, rather than asking, “Do you want me to come in with you?” I’d sit next to him and hold him and ask him questions about his condition. Men and women again. Mars and Venus.
So another complication adding to my misery was the roiling mix of resentment (damn it why can’t he focus on me and find a doctor and pick up the phone and make an appointment and tell me what I must do) and guilt (he’s going shopping and making dinner and doing the dishes and how can I be so immature and resentful I’m a real selfish shit). CFS turned me back into the little girl, lonely and needy in a dangerous world, seeking safety, care, warmth, rootedness. A grown-up who would pour his/her soul into me.
Did my early family life make me even more fragile than I might have been with a history of nurturing love? Who knows? Other sufferers tell similar stories of “the lonely, disparaged country” we with CFS live in, (Dorothy Wall, Encounters with the Invisible”, p. xviii) and there’s a lot of talk about nurturing the self, but I have yet to read about the extreme demands for perpetual nurturing on caregivers. Or the sick one’s actual need for infantilization. Poor Steve.
Thankfully, I’ve reached a clearer place where I can fend for myself much better, probably as the result of the antidepressant and the steep drop in stress after the deaths of my parents and my brother David’s move to a group home, and, most importantly, the time-outs Steve and I take to talk. Time, too, must be a factor.
But, unlike too many CFS sufferers, I have been blessed with loyal, patient and caring friends.
In his forward to “the facts: CFS/ME”, Professor Anthony J. Pinching says
CFS/ME. . .is a common, beastly, variable, confusing, invisible and pervasive illness. It profoundly changes just about everything in the life of an affected person, as well as in those around them. . . other people seem to react differently. . This illness doesn’t readily fit some prevailing medical or social paradigms. This leads some people to diminish, deny, or even neglect those affected.
A commenter on one web site describes her CFS and the reactions of her friends:
And the word “fatigue” is a mischaracterization. . . If one doesn’t have it or live with someone who does, it’s very hard to understand it. My long-time friends don’t even get it. Some think they do but they don’t. . This is so frustrating. (Kathy D.)
Other web sites describe friends who disbelieve and lose patience with CFS sufferers, blaming them for being lazy, or like my sons, exaggerating minor ailments. I too have encountered people who insist, “How ill can you be when you look so well?” They criticize and challenge and dispute everything from my symptoms to my treatments : “Yeah, I’m tired too. Just take a nap,” or “Go jog around the block. You need exercise and fresh air.” “You’re not taking Vitamin D? Oh my, that’s not good.”
They assail me with skepticism or offer anecdotes of miracle cures from acupuncture, from Chinese herbs, from hyperbaric chambers, from rife machines, from iodine treatments, from mangosteen or Noni juice, or apple cider vinegar. Though I’ve tried just about everything, I start perseverating: Maybe I should find another doctor for the treatment or maybe I didn’t stay with it long enough or maybe or maybe or maybe. . .
But I’m far luckier than bloggers like “hurtingallthetime”: “ive pretty much lost all friends from when i became ill…lost my job..and stay in house majority of the time…it is very isolating and hard. . My friends have been caring, helpful and understanding.
They regularly drove me to doctors when Steve couldn’t: to my Lyme doctor in Caldwell, New Jersey, to the witch doctor in Denville, New Jersey, and to the Chinese Herb Acupuncture Guru on 70th Street in Manhattan. That’s unbelievable. These trips could take most of a day– an hour there, at least an hour or two or even three in the office, another hour home. They packed lunches, brought their books or went shopping, and stayed cheerful and supportive.
They feed us. We’ve had challah and roast chicken on many Shabbat dinners with Karen and Steve. When Steve leaves on his adventure trips, friends watch out for me. Mort makes the best baked salmon, barbecued pork chops, applesauce and tamari chicken. They include me in their restaurant outings.
They always understand when I have to cancel something at the last minute because of a relapse. Their responses are supportive and consoling. (“Oh, I’m so sorry. We’ll really miss you, but please, rest and feel better.”)
They call to see how I am. They listen to whatever I need to tell them and keep offering their services. (“Do you need anything from the supermarket? The drug store? The farmer’s market?”)
Whenever my neighbor Marjorie goes to the Pennsylvania Dutch Farms near Princeton, she brings me a chicken; she baked me black bean brownies without sugar and a pumpkin pie at Thanksgiving.
Laura drove to Highland Park from her apartment in Manhattan to get me and drive me back into Manhattan for a writing group session.
When I’m flat on my back, they stop by for short visits. They bring bagels.
When we stay overnight with them at their home on Long Beach Island at the Jersey shore, our dear friends and ex-next-door-neighbors Richard and Nancy are always solicitous and cheerfully supply whatever I need, from seltzer to gluten-free crackers to quiet in the afternoon when I nap. I never feel discomfort or uneasiness. We’ve been on two cruises together since I’ve been ill, and just celebrated our 50th wedding anniversaries together at a joint party. It was amazing – and they did everything they could to accommodate my needs and feelings.
I love my friends.
Yet isolation is still one of the most profound results of this disease, for even when I’m with them, too often I feel desolate, and there is nothing at all they can do about it. They have rich, full lives while I live with daily deprivation and loss. But I know they are aware of this and empathize.
The concept of feeling “better” is a real bugaboo. If I say I’m feeling better, some inevitably assume I’m back to normal or maybe even cured. It’s difficult to face their expectations and explain again that, in the words of Dorothy Wall:
To me, better means this: In year three, on my absolute best day, I managed to walk eight blocks, a half a mile, but I couldn’t repeat this distance again, and the next few days I was unable to walk at all. . . people who are ill as long as I have been don’t get all better.
Encounters With the Invisible, 236
The gap between their assumptions and expectations and my reality is depressing and even embarrassing. It’s so hard for a healthy person to understand an illness that is mercilessly relapsing and remitting.
In any case, even the most compassionate of friends can’t give you back your life: your stamina, your job, your former sense of self. They can’t be there every lonely minute, nor do I want them to be. But they can continue to value and appreciate me as a person, making me feel as if I still have a place in the larger world.
And my amazing friends do that.
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.