I’m sorry for being sorry.
Do you ever feel like all you do is apologize? It’s what I do best, and for that, I’m sorry.
My friend Maria said something the other day that stopped me in my tracks: “Disabled and chronically ill people don’t need to apologize for our existence. Canceling an activity or missing an event at the last minute is not the end of the world.”
It feels like it is. And not just with work, where professional opinion and ongoing reputation matter most, but with the little things, too. Not going to the grocery store. Making my daughters choose between weekend activities. Telling my husband, “I love you, but I just need to space out and watch a movie for a while.” With every minor apology or small justification, I feel like I’ve added another layer of dirt to the guilt that is burying me alive.
I don’t just apologize for not jumping high enough in rehearsal or my inability to do a shoulder roll. I apologize for wanting to relax at night or needing to rest my eyes.
“You are not an inconvenience or a nuisance,” Maria said. “Living with unreliable health doesn’t make you an unreliable person.”
I was recently talking with a performing arts school that was in need of a ballet mistress. I immediately started grappling with the issue of when to tell an employer about my health. I often wait. Sometimes I wait too long and the conversation becomes an elephant in the room, but this time, I decided to be direct. I explained my surgeries and propensity for robot parts but followed up by saying they rarely get in the way.
Maybe that’s true. I like to think it is. Or maybe the power of positive thinking is the most powerful prescription there is. I don’t know. What I do know is that one of the teachers noticed my port-a-cath and was eight steps ahead of my admission. That’s the thing about unreliable bodies: They often reveal themselves anyway.
I am being buried. Every day, in every way. I am drowning in guilt and shame and self-hatred because the person I want to rely on the most is always failing me. She tries her best. She shows up despite enormous challenges. She works herself to the bone on more than most occasions. But in the end, she is not always someone I want to be around.
She is me.
“I am a canceler,” I told someone the other day after we joked about the friends who dip out on plans last minute. I have a good excuse: late nights of bleeding, or throwing up, or both. But how and when did I become that person? When did I become the person we don’t want to invite to the party?
I am her. She is me. No amount of reassurance is going to change that. And in the end, it’s up to the friend, the employer, or the partner to decide if I am, in fact, worth it.
I like to think the “end of the world” is not marked by a missed Monday or a wayward Wednesday. If we miss a movie or skip that barbecue, we aren’t worthless because we are worth less.
But I guess that’s not for me to decide. The world spins so fast and demands so much that sometimes I wonder why we twirl to begin with. What will be left at the end of all this? Will we be dizzy, lonely, broken, and done? I feel that way already.
For now, all I can do is remind myself that life is short. That the world isn’t ending. That I am worth something to someone in some way, just as I am.
I’m sorry that I’m always apologizing for being alive. But maybe one day it will be enough.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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