Wednesday, September 17, 2014

Authenticity




Being on extended medical leave has been a strange ride. I spend most days couch-bound and riding waves of anxiety and sadness, trying to stay on a schedule to keep myself occupied by reading, writing, playing music, and maybe sometimes drawing. I’m also seeing things more clearly than I have in a long time. I sit outside in my yard and think about life and look clearly at the chaos that is happening around me. I want to make my experience useful for others on this blog, but I am still figuring this one out. I know others who are ill or disabled or face other challenges must struggle with living authentically. This is a strange ride indeed.

I have realized that I’ve been living a double life. Not an interesting or even sexy double life as a secret agent or a superhero. I’ve been living a very boring one. I’ve been pretending to be “well,” to be able to stand, drive, be accomplished and have a career, and then come home on the weekends and be bed-ridden, unable to do the basics like cook for myself or do laundry. My husband picked up the slack on everything else. 

I’ve been pretending to be one of them—living among the well who talk about traveling, doing yard work, or going places after work. Pretend to not be on an endless cycle of suffering and needing to go to the hospital. Pretend to not have just dragged myself off the floor of my office or the bathroom and then walked into a classroom to teach. 

But as I have been getting progressively worse this year, I have maxed out my credit card on pretending. My body will no longer let me pretend. I no longer have the will power to keep up the charade. 

This is a good thing because now I can try to live a more authentic life. I have been lying to everyone and to myself for a long time—lying about what I am really able to do and who I really am now. Maybe living authentically is easier for others with chronic illness, but I thought I was making illness look good. For whom?

I’ve never been much of a liar because I’m really bad at it. Bullshitting is not really my deal. But I can put on a stellar performance of being “well” that I start to wonder if theater was my calling.

I wanted people to think I could do it. I needed to believe I could do it. There’s too much at stake if I really can’t do it. I wanted to believe that if I pretended long enough that maybe the performance would become reality. Fake it until you make it, right? It didn’t work out for me. It only made me worse. My fairy godmother never came to give me some killer heels and turn this pumpkin into a new life.

But I can’t do it. The independent, ambitious woman I was a few years ago is now wholly dependent on others to get by. And that’s ok. I still use my polite words, “please” and “thank you.” I'm grateful for the friends and family who have shown their true colors and stood by me and for my husband, who is my hero.

So I’m going to try this authenticity thing. Reality is harsh. It means doing very little driving. It means not pushing myself so hard every day, which is second nature now. It means accepting that my options have narrowed and I may continue to get worse. I’m going to be honest with strangers, friends, family, myself about what I am able to do moment to moment. I am going to keep using the electric cart at stores no matter how many times I get dirty looks from the elderly. I'll use my wheelchair when I should. I'll use my shower chair with pride. I’m going to remind people that despite being young and having a rosy glow (that’s the makeup talking), I am not well.


It means that I no longer care so much what others think, and that is incredibly freeing. I can deal with the stares when I use my walker. I can now pluck up the courage to say “Pardon me, but I think I’m going to faint. Do you happen to have a fainting couch so I can make this look fabulous?” My illness is an unpredictable beast and I’m going to stop fighting it so hard. It means suffering in silence less and maybe becoming in tune with the world around me once again.The future is very uncertain but I'm getting more comfortable with that. I am gaining a lot of life XP in the process, and that is invaluable.

I don’t know what authenticity will look like, but I like the feel of it already. I am sick. I am unable to stand or walk for longer than a few seconds. I can’t breathe sometimes. I need to lie down. I am kind of broken. I am hard core. I’m a tough cookie. I am smart and educated. I am a warrior, fighting from a seated position with plenty of fluids, salt, and chocolate close by.


How do others live authentically despite adversity?



10 comments:

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    1. Thank you! I'm glad that you found it useful :)

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  2. This is wonderfully written Stefanie! I'm going to share this as soon as I finish this post, with my son who's got POTS, as he's been having a real bad stretch as of late. Thank you!

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    1. Thank you! I hope things start turning around soon for your friend's son

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  3. This is so good! I'm trying so hard to get to that place! Living a double life is the perfect way to describe it.

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    1. I just realized that it's a double life, but not a very fun one :)

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  4. Love this. Understand it. Trying to be the toughest unwell person in the world is taxing. I know.

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    1. It really is. People think we fake being sick but we're actually working incredibly hard to fake being well

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  5. Can totally relate! 2 months ago I was a healthy 24 year old EMT and doing firefighter training. Until one day after a tdap shot I triggered hyperadgenergic POTS and went into SVT while transporting a patient from inside the ambulance bay. Then, a month ago I resigned from fire department bc I'm unfit for training and duty. Now, I am struggling to keep my ems job. If I loose my job, I loose insurance, bill money and treatment funds. However, if I keep my job then I have to hide my condition and suffer until the next trigger kicks me out for good. It's so hard when you're fighting a silent battle and forced to make dangerous decisions just to maintain life's needs. You appear fine some days, struggling others but the world around you truly has no idea what your going through.

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    1. Exactly Erin. This is what's maddening: we must push past our limits with devastating consequences because there's too much at stake. I'm definitely paying for how hard I pushed myself over the last year to work. Working as an EMT is incredibly demanding. I can only imagine. We need a gig that pays for persevering while sitting quietly :)

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