1972 was THE year for my family. I turned nine years old, my parents announced their divorce, my 3-year old brother died, and my sister became ill, the beginning of a life-long battle with several ongoing illnesses.
The fashion boom of flowing garments--bell bottoms and caftans--and skin-bearing midriff tops and halters perfectly reflected my position: I was both exposed and hidden. Where did the children of divorce end up in that era? I didn't know, but I wasn't going to talk to my friends about it; they all had two parents who mostly ignored my situation--a great stroke of grace--by including me as if I were a child of a normal home. And the children of grief? Of that I wasn't sure, either, but we did not end up in a therapist's office or even the school counselor's office. To my knowledge, no one at the school ever talked with me about my brother. There I was, there we were: in plain sight, hiding pain that changed our family for good.
When I recall this half-year of calamity, I tend to rank the losses: the hardest was certainly my brother's death, especially since I wasn't present when he took the fall that knocked him unconscious. I never saw his still, but still living, body, as my sisters did, nor the crowd of neighbors and relatives that gathered as if drawn by a magnet. When I arrived home, summoned by a neighbor, I entered a scene that was already set. All had their grief, already, welling up, a formidable wall. They were in process, I was outside it all. Everything I heard was secondhand, broken. An explanation, not an experience. I cried, too, when I learned what had happened, but I never shared in that original numbness that the sight of a small boy, immobile, invites. I only had images conjured from their descriptions. That has been my greatest grief and shame. And resentment. I wasn't there; I failed. It can't be made up, an absence of that magnitude. Unable to say goodbye to him, consciously or not, I hold him still in memory and seek peace that will not come.
Second on the list of difficulties: my sister's illness. Complications from her ongoing illness rock our family to this day. Though at the time it seemed more bearable than the loss of our brother, now it seems more central to who we are, who we've become. Chronic illness is an illness in itself, infecting the family; we all take on symptoms of disconnection, of role playing, of trying to ignore what asserts itself in every conversation we have. Many scenes come to mind:
Five years old, she sits on my father's lap in the bathroom, her eyes rolling back in her head, her head lolling back on my father's shoulder. Her body is jerking, her mouth open. My father seems caught between trying to comfort her and trying to stop the weird jerking. I am standing in the doorway, but even though I'm just seven, I know she can't see me. Later we learn what this was called: convulsions. From a high fever. The beginning of it all?
In the fall of 1972, she was thirsty all the time. She woke at night, her lips parched, she thirsted all day at school. Her lips swelled, her body swelled from fluids, she couldn't get permission to go to the bathroom from suspicious teachers. Many trips to the doctor resulted in a diagnosis: diabetes insipidus. Not regular diabetes, but something else. The treatment was daily shots to be administered by my mother.
My mother practiced on an orange she held in one hand, jabbing a needle into it viciously with the other. Our neighbor, Mrs. Sayler, a nurse, oversaw this paltry training. Sometimes Mrs. Sayler gave the shots, which were always administered in our kitchen, with my sister sitting on a chair, her pants pulled down to her knees, one of her smock tops hanging down, hiding her underpants. My mother took over and started the mother-daughter ritual that would define them: she held the needle, swabbed my sister's thigh with alcohol, then poised the needle above the leg. My sister screamed every time, tensed up, sometimes so much the needle couldn't penetrate her skin far enough to dispense the medication. Her screams, my mother's shaking hands, the blood-spiked cotton balls that collected on top of the kitchen garbage: symbols, reminders of a pain that wasn't going to go away.
Hospitals. The antiseptic smell, the plastic trays of food, containers of juice with peel-off tops. Cafeterias where we sometimes got to go through the line or buy cans of soup from vending machines. Flowers, teddy bears, cards everywhere. My sister propped up, laced around with IVs and tubes, the backs of her hands swollen and bruised with needle marks. Our stilted conversation. How are you feeling? When will you come home? The mystery was deeply embedded: no one knew what was wrong with her. We didn't know what to say or do. Our visits were important to our sister, we were told.
At home: evenings of quiet when my mother was at the hospital. She'd call on the phone to make sure we had done our homework, a dime each time. For a while, our grandmother lived with us; then we got homemade dinner, complete with a glass of milk, a few TV shows, a normal bedtime. When my mother got home early enough, we got good night hugs, very few explanations. We didn't know what questions to ask. Our mother's obvious exhaustion prevented our asking anything.
Answers, finally. A rare blood disease, histiocytosis. A cancer-type illness that attacks healthy tissue, causing tumors, growths, pain. Now we prep for round 2: surgeries, radiation, prednisone that made our sister swell before our eyes. She was home more, often sitting on our mother's lap while we older girls--too old to need attention like this, we thought--stood apart, observing.
High school is a blur of surgeries and failed attempts. My sister tries violin, she tries sports. Nothing works. My mother continues to insist on swimming classes, long past the time Trish needs to learn to swim. She can't be like us. She has few friends. When Terri and I break away from our mother's rigid control to drink and get high, Trish watches us, wary. She doesn't tattle; the distance between us grows, takes on a life of its own. Once, caught with our pot, my mother hauls Terri and me to a drug counselor. We sit, enraged, refusing to speak. Trish is asked, sometimes, to try a pain management class. She says she doesn't need it. Our mother goes on church retreats, comes home crying, hugging us, telling us how she is learning to let her anger out.
How many surgeries? Too many to count. How much radiation? Enough to make her hair fall out. She is the bride, at her marriage, with just a rug of hair covering her scalp. A ritual begins: surgery day, we all gather in the Family Waiting Room. Children are left at babysitters, our role is clear: to wait for the news. Dr. __________ comes out, a tall, handsome, dark-haired man. He couldn't find anything. He thinks he got it all this time. He had to scrape at the mandible, in the sinus cavities, at the mastoid. She will need follow up radiation. She will not need follow up radiation. Some of the pain afterwards will be from nerve damage. She could have surgery to sever those nerves, but she would lose control of half her face. But her pain, really, is hard to explain. She has more pain, the doctor says, than most people would have--than she should have. Eventually, he refuses to operate on her anymore.
Migraines, regular diabetes, rheumatoid arthritis. The histiocytosis, which is generally a childhood illness, outgrown after puberty. Has my sister gone through puberty? We can't tell. Baby-faced, heavy, stubborn. Once she refused hormone treatment to ensure her full passage through puberty and regular menstrual periods. I've had enough medication, she insists. More illnesses, piling up like train cars leaving the track. One disaster leading to another. Constant pain, especially at night. She sleeps sitting up. She rarely sleeps. Family vacations nearly impossible. She says she doesn't need sleep. Once, she falls while home alone, hitting her rib cage on the side of the tub, her head on the bathroom counter. Rather than call 911--I was going to be fine, she tells me later--she waits 7 hours for her husband to get home from work.
I fall recently, trying to move something too heavy for one person, sprain my thumb. I can't drive, call my son, since my husband is out of town. He drives me to the clinic, where I find there is really nothing wrong with me that rest and ice and ibuprofen won't cure. My sister is so sad for me, when I tell her, that she almost cries, and I hang up the phone, like always, guilty.