by Christy Gualtieri
My mother is dying.
In 2011, she was diagnosed with cancer of the salivary gland (which is so rare that it accounts for less than 5% of all head and neck cancers); but because she hadn’t had health insurance at the time and couldn’t get any (this was before the Affordable Care Act mandated that pre-existing conditions couldn’t exclude folks from trying to get treatment), she had to go almost a year without any treatment whatsoever. When she could finally get insurance, they rushed to start her surgery, but by then the cancer had enveloped one of her facial nerves and had possibly traveled to her brain. They began an aggressive round of radiation after the surgery that seemed to work. She was in remission. She was given a 95% chance of no recurrence in the next five years, and she made it for three and a half.
The tumors have spread to her lung, bones, and in her blood, so no more surgery. No more radiation. The only option left is palliative chemotherapy that will hopefully slow the tumors’ growth to buy her more time, time that we are all desperate for. We don’t know how much time that is, unfortunately; we don’t have a calendar we can count the months on, no way to know for certain.
We found out two weeks ago, and in those two weeks I think I’ve felt nearly every negative emotion there is. I’ve felt the heaviness that comes from near-despair, the kind that makes you feel as though your entire body has been filled with cement and it takes every amount of effort you have to turn on something as simple as a light switch. The sheer sadness of it has interrupted even the small acts of making dinner for my family, or reading a bedtime story.
They’ve kept me down, these emotions. And I’ve had to give myself permission to understand this is part of a grieving process, and I try to remember to be kind to myself. I’ve leaned more heavily on my friends than I’m used to, and I’ve been humbled by their powerful desires to help wherever they can.
But in the darkness of these days, I’ve had to give myself more than the pep talks I usually give myself when I’m feeling down: I’ve had to actively search for joy. Because I know it’s there: joy, not happiness. To me, joy is an emotion that lies under the surface of happiness. It makes it harder to tap into, because you have to search for it, but once you find it, it can’t be ruined by the ups and downs of your circumstances. And why look for it at all? Because joy is sustaining. Joy is replenishing. And joy will see you through.
It’s not easy – it never is, when someone you love so much is sick and has learned they will not get well. One of the hardest things is not having any point of reference – even with my mother’s initial cancer, it was never as bad as this – and so we don’t know what will happen next.
I know you’ve been there before, even if you’ve never experienced my specific circumstance. I know that there have been things that have happened to you that have left you feeling shattered, and you doubt that you’ll ever be put together again. ` So I’m asking you to walk with me during this really hard time, as I try to find the joy I need each day that will remind me that life, difficult as it is, is beautiful and is worth living to the fullest. Maybe you’ll start looking for your joy, too. Maybe that way, you’ll know you’re not alone, the way I know I’m not alone.
Let’s look for the joy – together.
Until next time, be well!
Christy Gualtieri is a freelance writer specializing in pop culture, religion, and motherhood. She lives in Pittsburgh with her husband and son, blogs at asinglehour.wordpress.com, and tweets @agapeflower117. Follow PghPsych on Facebook and Twitter for daily updates, inspirational quotes, articles, and different events and causes related to good mental health!