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On Grief, and Connecting to a Community

By Becky Allen

July 16, 2013

Me and Mom, a couple of years ago. I look weird, but she looks lovely.

Me and Mom, a couple of years ago. I look weird, but she looks lovely.

I was raised by parents who didn't just tell me that it was important to do good things and help my community, they demonstrated it in the way they lived their lives. Dad was a volunteer firefighter. Mom was a nurse. Together, they helped cofound our tiny town's emergency rescue squad in upstate New York. They were often first responders -- the kind of people who don't rubberneck at accidents, they pull over and help.

I've been working at for going on six years. The job I had before this one was at a magazine that gave wealthy people advice on awesome ways to spend their money. Needless to say, having grown up with my parents' ideals, working here and serving the HIV community is infinitely more satisfying and rewarding.

But I've also always felt a little bit removed from the community. I fell into working at by accident, when my previous gig vanished as the economy tanked. I applied to dozens of jobs, because, well, I had student loans to pay off. (I'm still working on those, actually.) Everything I knew about HIV when I started here was out of date or inaccurate. At that point in my life, HIV was something I had learned about in school, something I cared about in the abstract sense that of course I wanted things to be better, but not something concrete that seemed to affect my life.

Even after I began working at, as my ignorance was rapidly corrected, some distance remained. Not from a lack of empathy or caring, but from a lack of experience. I've led an incredibly charmed life. My family has always been extremely loving and accepting, and I've never really experienced much personal loss or tragedy. I've never lost anyone close to me, and I've never had a major health issue myself. Learning the history of the epidemic, watching documentaries, reading people's stories, and meeting actual, real-life, living, breathing human beings has taken me a long way toward understanding, but there was still always that gap -- I empathized, but it felt abstract. Until recently.

Last winter, my mother had a sudden, massive seizure -- followed, in short order, by brain surgery, a stroke and an eventual diagnosis of brain cancer.

Mom showing off the socks she knitted me. She also spins, sews and quilts. Oh, and makes terrible puns. She's probably very disappointed there are no bad puns in this whole piece. Sorry, Mom.

Mom showing off the socks she knitted me. She also spins, sews and quilts. Oh, and makes terrible puns. She's probably very disappointed there are no bad puns in this whole piece. Sorry, Mom.

It has been an incredibly long eight months since then. I've probably done the five-hour bus ride to my folks' house more times this year than in my first six years in NYC combined. There have been endless phone calls and status updates, standing by while Mom went through radiation, on chemo, off it again, and back on. Blood transfusions, pills to lessen the side effects. Hours of physical therapy, enough MRIs that we've lost count, and excruciating, endless waiting -- which is where we are now.

There were days, especially early on, when I'd burst into tears at work. There have been good news and setbacks alike. I brace myself every time I get a phone call from my folks. And I've thought endlessly, my mind racing in spirals when I should be doing something productive like cooking dinner or running my laundry: I can't believe this is happening to my family. I can't cope with this. How is Mom coping with this? How can anyone cope with this?!

HIV and cancer are not the same, of course, but there's a core of emotional overlap. Every day, millions of people face down anxiety and depression over their health, or a loved one's health. They think, I could lose this person soon, and I want to do something, and I don't know how to help.

And every day, I come in to work here. Not to be too self-congratulatory about it, but I'm part of a team that helps answer questions, shares stories and lets people know that it is possible to carry on. I'm part of a team that helps.

I've always been happy about working here, because as I learned from my parents, helping others is just the right thing to do. But now, my job is more than that.

It's how I carry on.

Becky Allen is the site director for and

Follow Becky on Twitter: @allreb.

Copyright © 2013 Remedy Health Media, LLC. All rights reserved.

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