My mom has been gone for 20 years. Most people don’t realize that, before she died, she had a terrible, debilitating illness. When she was diagnosed, I no longer lived in the same city with her and struggled with how to be available to her and to my sister, who lived close and ended up responsible for her care. She was sick for maybe 7 or 8 years and after she died, I realized (slowly and with some guilt) that the person I missed, the person I called “Mom,” had been gone since shortly after the illness arrived. It was an Ivan Ilyich moment long before I read the story.

The problem is that the healthy have so little connection to illness. If you don’t wake up in pain, for example, you can’t possibly understand how completely pain can take over your whole being/your every thought. If you don’t travel to radiation every single day, is it possible to understand the debilitating sorrow and fear — not to mention humiliation and pain — that come with that trip?

So, how do the healthy in a family maintain their relationship to the ill? That’s a question that troubles me constantly. Ken falls asleep before dinner is on the table and he sleeps until long after we have all tucked ourselves in for the night. When he pulls himself — still  worn out — from the bed every morning, the kids are either sleeping or rushing to their activities. It’s not exactly bonding time. Yes, the weekends offer a tiny respite from chaos but not from cancer. While Ken gets a break from treatment over the weekend, he continues to be exhausted and emotionally bereft.

When my mom was ill so many years ago (long before we could turn to the internet for support or even information), her moods changed abruptly. She was unpredictable, often irritable and disoriented. Occasionally, my quiet, loving mom would actually shriek at her caregiver (usually my sister, sometimes me). She would always be apologetic later but that never made it easier in the moment. Of course, Mom had an irrefutable excuse for all of her moods but when I think about her now, I focus more on the person I knew before the illness — always depressed and anxious, but creative, smart, so encouraging, and supportive of the two daughters she loved without measure.

Ken’s different too and so are we. A little story:  I met one of Ian’s camp counselors last week — he goes to a music and art day camp at a local college — and she laughingly said that she hugs Ian every day to try to make him smile. It’s a frequent refrain — people commenting on Ian’s moroseness. We don’t share our private sorrow with most people and I’m not sure it would make Ian’s life any easier. Kids, especially, seem to enjoy teasing him about his “lack of emotion.”