As well spouses, we know the effect of chronic illness on ourselves. We know how it robs us of our dreams, our future, even our identity. We know how it sometimes makes our anger turn to rage, and even on occasion we may find ourselves saying cruel things that we don’t really mean. For some of us, it leaves bitterness, for others depression. We live our emotions and so we recognize and understand them.
But, what of our children? They too go through the same multitude of emotions brought on by living with a family member who is chronically ill. Often they don’t have the maturity to understand what they are feeling nor the skills to cope and deal with these emotions. They may act out and not know why. And, though they try, they sometimes cannot control what they do because they are driven by emotions they don’t understand.
I just began the book, Sixty-five Roses by Heather Summerhayes Cariou. It is about growing up with chronic illness. In Ms. Cariou’s memoir she talks about the emotions of her family, but in particular herself, as she grows up in a family where her younger sister (and later her brother) has cystic fibrosis. She discusses her feelings toward her sister, love, anger, guilt and how it controlled her behavior toward her family while growing up.
As I read the book I thought of my own children, and how they had coped with their father’s MS. Some parts of the book gave me new insights into their childhood. Some, of course, didn’t apply. On the whole I felt the book was honest, real and a worthwhile read for anyone dealing with chronic illness, whether as a family member, friend or even counselor. I’d like to share some quotes of the book with you. I think these words will help everyone have a greater understanding of what children deal with in this situation.
The author describes living with chronic illness as living in a war, yet trying to be “normal.” She talks about how her parents “were like soldiers under fire…on permanent alert. They slept poorly, startled readily, frustrated easily…. I picked up on my parents’ signals, copied their rhythms, and mimicked their responses.” The family ” would walk the fine line between fearing the prognosis and maintaining hope… Preparing for (my sister’s) death, while still working tirelessly to keep her alive.”
As for family dynamics Ms. Cariou fell into the role of the difficult child. “Each member of a family has a role to playeither chosen or assigned. It became my role to act as the lightning rod for the emotional electricity…. I gave voice to the unacceptable and unexpressed…as I howled out our darkest fears, our most unacceptable emotions.”
As her sister is the focus of the family and center of attention she wonders, “Who was I besidesPam’s sister? How could I make myself seen or heard? What must I strive to do to be valued, by my family, my friends, or the world at large?”
Talking of the guilt that always weighs her down she notes, “The child who is dying says, ‘In that case, I’d better have some fun before I go.’ The child who sits next [to her] asks, ‘How dare I have fun when my sister is dying?”‘
The author continues to share her feelings as she grows up. “Just looking at [my sister] reminded me that I was so powerless, so impotent, so futile, so no good and nothing and bad. I woke up angry and went to sleep the same way.”
Even as she becomes an adult, the guilt eats away at the normally joyous events of growing up. “I was thriving in my acting class. I was in love and I danced to the radio in my tiny kitchen singing along…. But at the end of the day my joy felt like sharp reproach to my life as Pam’s sister. I paid for it in nightmares, frequently dreaming that a stranger was coming through my window with a knife.”
And so, through sharing her own experience of growing up with a chronically ill sister, the author allows us to get an understanding of each real player in the drama as she herself gains these insights. After years of a turbulent childhood she gains insight not only into herself and that of her ill sister but that of her parents as well. “It was not a lack of sympathy or intelligence that prevented my mother from understanding my anger. It was the thousand details of her life, and her own pain, blinding her.”
Reading this book may be painful to those well spouses who have children. The insights into their feelings and emotions are quite raw. But it is a valuable journey. And we are reminded that it is not too late to acknowledge everyone’s pain as we gain insight into how we all, from the youngest family member to the oldest, are differently affected by the illness that may not live in our bodies, but certainly in our minds and emotions.
You can reach me at firstname.lastname@example.org