Saturday, August 5, 2017

The Room at the Top of the Stairs; My Aunt's Illness

My Aunt Ida was one of the most interesting people I knew as a child. Her clothes were exceptionally glamorous; she and her husband Lou lived in New York City; and they had their own business and were doing really well.

She was funny, fun loving and sophisticated. Everything I wanted to be.

Then Lou got cancer and passed away when Ida was  in her thirties. Sadly, she herself developed a rare and ravaging illness some years later called Pemphigus. It created sores on her skin that wouldn't heal and kept her in bed for months on end. 

I believe it was as painful as it was disfiguring; and we could find no drugs to treat it except a steroid for pain called Cortisone.

Years later, I learned that Chris Stein of the band Blondie contracted the disease, though by the time he did, more treatments were available. My aunt had no such luck. Sometimes she had to be hospitalized and at some point she came to live with us and stayed in my room. My sister and I spent a lot of time with her, and she was always gracious about talking with us. 

I can't honestly remember my aunt emerging from her room at the top of the stairs, which had been my room. I don't recall her eating with us at the table; but  memory doesn't always serve us when someone we love is ill. Maybe it's just that we do not want to remember, and send remembrances away.

I do know there came a time when Aunt Ida got worse and had to go to the hospital - or a nearby nursing home. I remember her crying and begging for my mother to keep her with us. I remember holding back my own tears and praying that somehow God would save her, or that my mother would figure out a way to let her stay.

Unfortunately, my mom wasn't able to care for her sister when things got bad. My aunt went to a hospital first, and then my mother found a long-term care community a few miles from our house where my aunt could live. It seemed pleasant and sunny and the staff seemed kind. Yet I knew my aunt would have given anything to live independently again, on her own. She once made a beautiful sewing basket for our family out of tongue depressors, and we kept it for a long time. We visited her frequently and I remember loving her smile and hating it when she cried.

When I was nine years old, my aunt died in her room at the home. I wasn't there and in fact no one in our family was with her. When I think back on this time, I am haunted by the idea of her being alone at the hour of her death.

I would like to think that today we are better about how people with chronic illnesses are treated, but unless they have really dedicated, committed family members, and the family members have support from friends, family or neighbors, I don't think much has changed. 

As a society, we are afraid of illness and of getting old. We tend to send people away and put them out of sight and out of mind. And that, I have decided, becomes not only their loss--it becomes ours as well. Because just because you are chronically ill doesn't mean you have lost your ability to think, share your stories and love the people you know.

If someone is ill in your family, how do you treat them? How do you want your kids to view them? How do we talk about illness with our children -- and with each other?

I understand it is extremely hard to be a caregiver, and since most women work these days (and most caregivers are women), it's hard for people who are ill or older to live independently in their homes. I think we are at least making strides towards that goal, but I can't help but feel it's not enough.  

I don't know how to get there, but I DO know we need to keep talking to our kids about it. Because if they can learn to stop stigmatizing illness, they'll teach the rest of us how to do that too.

Too late for my beautiful aunt, but not for others struggling now with chronic conditions or illnesses. We need to figure out how to make life better for them--and we can't let those illnesses win.

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