Before I get into my post, I would like to say, no news yet on the insurance situation. When I know more I will write an update.
So, what do you do? It's an age old question we ask others and get asked ourselves. This question is usually the ice breaker into any small talk conversation with a stranger. It always seems to be the safest question to ask someone when first meeting them. Asking someone their profession, or what do they do in their life seems to be society's way of defining each other.
Since graduating college, I have been able to answer this question without having to tell much of a back story. "Oh, I work in non-profit." Or, most recently, "I'm a part-time nanny." These answers seem to always suffice. The stranger is usually satisfied with my answer, and we move on from there.
As of a few weeks ago, I no longer have an answer to this question. My lungs are too crappy to work in any capacity. And because I don't run into many new people, I never thought about what I would say to someone who asked me, what do you do?
I now have been asked that question a couple of times in the last few weeks. I stumble over my words immediately. I look at Tom in pure panic mode, thinking, help, what do I say that makes me sound semi-normal?!
The first time I got asked, I panicked and said I was a housewife, uh, I mean, homemaker, no I'm no Martha Stewart! Tom jumped in and said, she is not working because she has Cystic Fibrosis and is waiting for a lung transplant. I was a little stunned. Stunned because I was still working out what I was going to answer with, stunned he just came out and said why I wasn't working, and stunned thinking why didn't I just say it?
I'm not one to tell strangers right away that I have CF. I have never found it necessary and I never want to hog the conversation explaining my disease. Most of you know though, I am not one to shy away from explaining CF when the time is right.
I think about this question now, in the context of my life, and I really don't know how to answer. I don't have a job because I'm too sick, that is the truth, but who wants to be the Debbie Downer at a party telling everyone I'm sick and I spend my days trying to survive?
I know to most it doesn't matter what I do, but to be normal you have to feel like you fit in. Not having a job, no matter the circumstances (this excludes stay at home moms. That is a job, and a freaking hard job at that! You have something to say when asked that question.) makes one feel like an outsider.
I don't have much conclusion or final thoughts on how someone with a chronic illness should go about this. I wish as a society we could get away from defining ourselves by what we do from 8-5, but that's just not how we roll on this planet. So, I learn to adapt. With adapting comes creativity.
Tom and I brainstormed one afternoon what my new job title should be. I realize I will get asked that question again and I need to be prepared, whether someone is ready for my honest answer or not. My new job titles are just to get the conversation started, or maybe a blank stare and someone leaves the conversation in total confusion. In any case I'm glad to provide people with any of the following super important sounding job titles!
In no particular order :
- Chief Health Officer
- Head of Healthy Patient Living
- Executive CFer
- Chief Strategist of Breathe More, Cough Less
- CEO of Mucus
Wow this post really struck a cord with me as you and I have talked about this before...it is really hard to know how to answer! 4 years of knowing I had lyme and 2 years of trying to hide it have taught me what Tom said is always the best way to go: quick and to the point honesty. If someone can't handle it that is there problem but it empowers yourself to be able to say the truth, I have found. That panicky anxiety over what to answer with is just not worth the stress in the long run. In the least you can say you are handling some serious health issues that prevent you from working at the moment. That's what I say when I don't have the energy to say the full thing about having lyme. It gets easier through time and practice. Then you just follow it up by saying what you use to do or are planning on doing. This seems to satisfy people in my experience. -Megan :)
ReplyDeleteI tell people I'm retired. Then they get jealous!
ReplyDeleteMaggie, I have found that we spend more time and energy worrying what people will think of us and our answer then they actually do. Most times they are trying to make conversation. So I would say that I used to work for a non profit but health issues have promoted me to Chief Strategist of Breathe more, cough less and if they ask you to explain, do. Because when people get to know you, they love you no matter what you tell them. You are an inspiration to everyone who meets you.
ReplyDeleteYou are far more than what you do for a living or what disease you fight! You are the unique, amazing, funny, talented and beautiful Maggie Sheehan!! Nobody does it better.
ReplyDeleteMags, this is such a good post. I am so grateful you shared this! Quitting my job and becoming a trailing spouse / housewife made me dread the question, so I can only imagine a tiny bit of the panic you feel when someone asks you! I think your friends above are right - what you do for a living or what disease you fight is not your definition! But, if I had to choose, I'd vote for CEO of Mucus. You go, girl.
ReplyDeleteI browsed other's comments, so I hope this isn't redundant. I definitely think this is a wonderful post! Very deep and insightful. When we ask ourselves, "what's the meaning of life?" we are the only ones who can answer it. What we choose to do with our lives is what we want it to mean. Rather what we want it to mean should focus what we do. You've chosen to be a great spokesperson for people with CF. Not just now, but your whole life.
ReplyDeleteI'm with you that our 9-5 lives are not always who we are. I think of myself as much more than a Low Voltage Electrician or construction worker. I need to really feel comfortable talking to other people about the things I do, not for money. When thinking about what we "do" we should really consider what do we do for others. Right now you are opening a lot of people's eyes to what the real life ups and downs are with what you are going through. You are entertaining them, you are educating them, you are connecting with them, and you are engaging them by asking everyone to share or think about what they have to be thankful for. Right now I'd say you just tell everyone you are building a community and preparing for and starting a difficult journey that you plan to come out the other side better than ever!
Haha. My favorite is Executive CF'er. Because it speaks to the very public role we sometimes must assume as we use others' curiosity as an education opportunity, as tempting as it might be to slam the door of their curiosity shut and bolt it while we say, "Don't ask me! I'm trying to lead my life!" And don't worry Maggie- you are in a transitional phase right now, just as I am. I have an internship, so that provides a readier answer, but I'm still searching for paid work or more school. We're not alone, sadly- the economy is one leaky boat.
ReplyDelete