I've written about this topic twice before at OneUtah.org - here and here. It continues to tug at my consciousness.
It's one of my earliest memories.
When my brother was three or four years old, he was in the hospital with double pneumonia and an asthma attack. One night, my parents came from the hospital, woke me up and drove me and my sister to the hospital. I remember the night being very quiet, strangely peaceful, even beautiful - I liked being out at night when no one else was - I enjoyed the ride to the hospital. I was warned that I wasn't to make noise or make a fuss because visiting hours were over and I wasn't even supposed to be near my brother; they snuck me in and my father carried my brother - in yellow pajamas - into the elevator where I was waiting. He waved, I said hello, then my father carried him back to his room.
I don't recall how we got home - I suspect I fell asleep in the car and was carried into the house.
It was years later that I was told the truth.
The doctors told my parents my brother was very likely to die in the next 24 to 48 hours and that the family should say goodbye. I was instantly consumed with guilt for having enjoyed being out late, for not knowing what was going on. In the past, I observed:
Parents are often unable to set boundaries with their ill child. Once that child recovers it continues; for children with chronic conditions (i.e. down syndrome), boundary setting is even more difficult. Parents never fully recover from seeing their child as “sick and/or dying.” Emotionally, it leaves deep scars.
To this day, my parents look at my brother and see that terribly ill child in the yellow pajamas. Where my brother is concerned, my parents are literally incapable of setting boundaries or of recognizing that they need to be set. Parenting a seriously ill child is deeply traumatic and is a black swan experience - it changes you forever. Adults I know whose children have had serious illnesses, not even life-threatening ones, are emotionally traumatized by the experienced.
I see the effects of having grown up the healthy sibling in many areas of my life.
I can be an extremely effective caretaker of those around me - and people often turn to me in times of crisis even though I never ask them to. A friend of mine in college explained it by saying I was the sane center of the universe - I seemed to have it together, I exuded a simple competence with the world. I remember laughing and saying, "If only you know the truth." My experiences were not traumatic and I cannot pretend they were. Instead, there was a kind of permanent imbalance in my life, a settled awareness within me that I could not expect the adults around me to competently meet my needs and expectations so I had to step up and do so. I tend to assume other people won't handle the fundamentals of care taking for the group, so I simply take charge of the fundamentals.
I can also be very matter of fact about injuries and illness. When I was in sixth grade, I had an accident on my bike. Upon returning home, I realized my arm was swollen and stiff, and that I couldn't move my wrist. As I was going to be home alone until one of my parents returned from work, I used a dishtowel to immobilize my hand and wrist and went about my business. When my father got home, I walked up to him and said we needed to get an x-ray of my arm. To this day, my father recounts this story with amazement. I wasn't in hysterics or upset or crying, quite simply knew the basics of how to cope and did so until such time as I could get the assistance I needed. When I was in college, I got the flu. I was miserable. But, I knew what needed to be done - I got to the drugstore, got medicine, got some sleep, dosed myself, contacted appropriate faculty members to arrange adjustments in due dates, and got well. My mother said, at one point, "I was so worried. I wanted to come take care of you." I relied, "Why? I was just sick, it was no big." Unfortunately, this means I find myself impatient with sick people who demand to be waited on hand and foot when they could do for themselves - an friend of mine used to lay in bed and expect to be waited on when he had a cold.
When a sibling is critically and chronically ill (my brother experienced both), the healthy siblings are often left to fend for themselves. They grow very good at recognizing how to set boundaries with people and get very good at not being taken advantage of; yet, because they are children, are unable to meet their own emotional needs even as they learn to navigate their physical needs. So their emotional needs are often unmet by the adults around them who are accustomed to seeing this very competent child do for themself. I was adept at caring for my own physical needs, my unmet needs were often emotional. Had we lived in the city, I would no doubt have found myself best friends with the librarian (and if life were a novel, we'd've solved mysteries together). But, we lived in a rural area with no neighbors so mystery solving for me.
When I was 13, my brother experienced his last major childhood critical illness - again a life-threatening illness. My parents were simultaneously absent and present during this illness. There was nothing the could do for him, so rather than round the clock attendance at the hospital, they tried to be present for him during the day but in the evening they'd come home. As my sister had gone to college, I found myself for the first and only time in my life the sole child in the relationship. I've long suspected my parents were a bit shocked to realize they hadn't been paying attention to me. They didn't know me at all. I think this pattern probably repeats itself in other families with similar situations - the sick child either gets better and the parents expand their focus or the child dies and the parents have to refocus on the remaining siblings and they realize these little persons have grown and changed while the parents were looking away. They are new people and the parents don't know them. I experienced my parents parenting as interference - habits which served me well when my brother's illness was at its most serious were troubling to my parents who saw my independence as willful disobedience.
When one family gets seriously ill, the entire family gets sick. I see, in a family of my acquaintance, a similar dynamic - though in this case, the ill family member is a parent. While the parent is suffering through a truly horrific personal struggle, the children are growing and developing; the parent will (I hope) survive but then face an entirely unexpected challenge - forming a relationship with children who have grown and changed while the parent was ill. The children in this family have developed a steadying, sane center of the universe look; it's one I recognize, a simple competence at dealing with the world that is deceptively calm. It's a competence which masks profound fears and uncertainties. I can honestly say I've been terribly fortunate for someone who has spent as much time in hospitals and doctor offices as I have, very little of that time has been because I was in need of care. The healthy person in the doctor's office is an outsider.
Had my brother been born even ten years before he was, I doubt he would have survived his childhood. Rather than life with an ill sibling, I would have grown up in the shadow of his death. As I meet more people, as I experience more of life, I see the impact of early childhood experiences. The shadow self who is me is sometimes intriguing to explore and face - the choices not made, the turns not taken. Who would I be if my brother had died or if he hadn't been so sick? Who would I be if I'd spent less time alone or less time in doctor's offices despite being quite healthy?
These early experiences shape us in ways both subtle and obvious. During my brother's longest hospitalization, because of his age and the nature of his ailment, he required while awake the presence of an adult family member at all times. My father went before work, my mother arrived as he was leaving, returned home after my father finished work. My grandparents took some odd shifts here and there. I was alone, a lot, during that time. It was disorienting yet liberating. It began with an end of program year event for an organization (Cub Scouts, IIRC) I was in and I was receiving some sort of award. My brother fell ill during the awards ceremony and was rushed off; a neighbor took me home and dropped me off. I never looked at the award I receive again until some years later when I threw it away. I never again participated in Cub or Boy scouts with anything approaching interest. At the end of that long summer, my brother returned home and one of the things he was given was a truly massive stack of paper and a box of crayons that would keep him entertained while he was homebound (as he was for several weeks). I was informed in no uncertain terms that I was even to touch the paper. It sounds so odd at the distance of 30+ years but that stack of untouchable paper my brother never used symbolized for me the entire experience.