Secret Society

What do you owe someone?

After a 40-hour workweek and two huge fundraisers, I find myself reflecting on a week where I pushed my body to its limit. A few moments stand out, but there’s one in particular I’m going to focus on. It happened during the second fundraiser on Friday night. I was sitting at a table with my fellow volunteers, and we were just finishing up the meal that had been provided for us. After some initial hesitation, I went for a second helping (There were extra meals. I definitely wouldn’t have taken someone else’s, no matter how hungry I was). I get self-conscious about eating in front of others, as I don’t want them to think that I’m a human garbage disposal, even if sometimes that’s exactly what I am.

As we sat there and talked amongst ourselves, my former co-worker introduced our table to a friend of hers. My coworker communicated to our group the reason the woman was involved with this particular organization, letting us know that she’d lost someone dear (I won’t get specific). We then went around the table, and it was brought to light how each person got involved with an organization that works with ALS patients. When it was my turn to speak, my coworker simply said, “Adam also has ALS connections.”

“Yes, I do,” I replied.

“Are you sure you want to leave it at that?” she asked.

“My father and my first stepmother,” I replied.

I returned to my food, but I felt differently for the rest of the night. I was in the company of people who’d lost so much to this awful disease, but having to bring up my past altered my mood, even if the change wasn’t visible to anyone else. It brought the evening home for me, when I try to remain disconnected. When the conversation was over, I cleared the rest of my plate (despite everything I’ve been through, I’ve never once lost my appetite), and I thought about the conversation that just transpired. I haven’t stopped thinking about it sense.

—-

When I was younger, I could talk about my past with ease. I was almost eager to offer up the information. I could talk about my personal history like I was going over the answers to trivia questions, and I could return to normal conversation like it was nothing at all. At the time, it really wasn’t. I knew I’d been through hell, but recalling those old memories wasn’t jarring or painful. In my mind, these things were all just a part of my story, and the details were available to anyone who was curious.

As I’ve gotten older, I’ve become more withholding and vague when the topic of my history is brought up. When people ask, depending on who it is, I don’t say more than is absolutely necessary. People don’t get to know the personal information about me unless they plan on being a part of my life. It’s getting hard enough to discuss it with people I know and love, and I don’t want to talk about it with people who are just passing through. I’ve become more protective of myself, and although I write a very personal blog, there is a difference between writing about it and talking about it. I can’t tell you why it’s different; it just is.

I used to be so open, willing to tell anyone anything about myself. My open book policy has changed quite a bit, and I’m curious as to why that is. My working theory is that even though losing people is painful, you don’t fully grasp the significance of it all until you’re older. The moments you would have shared with that person aren’t as special. Things like weddings, graduations, christenings, all have a different tone. You don’t realize it when you lose them, but there are so many things that person won’t be there for. They won’t be able to give you advice, or to laugh with you at the absurdity of life.

—-

In a situation like the one at the fundraiser, I felt compelled to offer up the specifics of my ALS experience, and it wasn’t just because my coworker coaxed it out of me. During my travels, so many people asked me how I’d come to be involved, and I was always honest. I could have lied, or said I don’t want to talk about it, but when you’re talking to someone who’s going through such a hellish time in their lives, and you know something about it, you feel compelled to open up. They’d ask follow up questions, and I’d do the best I could to answer them. There were some tears and shocked faces, but they had to know deep down that the answer wasn’t going to be a positive one. My hope was that maybe I could offer some comfort, something that could provide some solace in the future.

It’s like joining a secret society when you lose someone so close. It’s an individualized experience, and it changes your world in profound ways you never expect. Your conception of life and death change, and you find humor in the strangest places and moments. It’s one of the things that attracted me to this specific organization. A part of me longed to speak the language of ALS once again. I knew that I could be of service to this segment of the population, that I was strong enough to deliver equipment, and that I was going to be forthcoming with whoever asked questions about my parents. Some of these conversations were the most difficult I’ve ever had in my life, but I’ll hold onto them forever. To be able to have such a moving as well as devastating conversation with someone as part of your job was never lost on me.

I owed something to this woman at the fundraiser. I owed her an honest answer since she’d been so up front with all of us. It’s not always easy to dig into your past, and I’m finding it more and more difficult as I get older. I know that it means I have more work to do. I never want to close my heart and start becoming bitter. I never want to withdraw into myself. I’ve taken some damage, but I know I can empathize with people and talk them through trying times. I’m still not sure how to navigate regular, every-day life, but I know that when life gets challenging, that that’s when I’m at my absolute best. It’s a secret society you join when two people have both gone through something so traumatic, and it’s a connection that’s worth sharing and discussing. I know that that’s how healing occurs. I don’t always know what I owe other people, but I owe it myself to keep sharing these experiences. We all owe it to ourselves. Thanks for reading.

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