Living in the Dark

Eight years ago I suffered a devastating health crisis.  My life in New York City morphed into a reality I didn’t want to accept.  As a result, I pulled inward, shut people out, and allowed myself to suffer in semi-silence.  When I was communicating it was generally in rants, crying fits (that no one witnessed and were fairly scary to behold anyhow), or terse truncated sentences to friends helping me to hold on.  The unknown of why my body had decided to utterly shut down (from multiple vantage points) and the fact I didn’t have an explanation for anyone like “I have cancer,” or “my colon needs replacing” or something else logical and explainable only made it worse.

Luckily, we found out I have this “little” thing called endometriosis and this other “little” thing called “coeliac’s disease” and the two like to feed on each other like piranha’s to unsuspecting guppies. Once the health crisis was sorted and I moved back abroad– to a much better standard of living and lower stress levels than New York City could offer– and I was left to try and wade through the emotional impact this crisis had on my overall relationships and desires for my future.  I had a hard time confronting the fact that I had never been able to get back to the energy levels I once had. I believed that if I pretended this episode of poor health, despite physician warnings, was just a one-time thing, I could ascend back to juggling multiple theatre projects, a full-time job, and volunteer work.

It is amazing how people treat you when you do have a rare condition that they know nothing about.  It is also incredible how good you get at pretending that everything is okay when you know it’s not.  Seven years later, five years after surgery, the old body is having loads of trouble.  In a nutshell, twelve hours of a sleep a day doesn’t seem enough and I’m constantly in pain.  I feel like crawling into a cave and giving up until it is all over.  However, I know that isn’t an option: because that’s what I tried before and it made me a complete emotional wreck.

I have actively had to fight against the instinct to sleep away every waking hour and instead pour my time into continuing to write, read and even clean. (Cleaning is one of the easiest ways of feeling productive, I’ve realised, when I can stand upright long enough to do it). I have fought to be social and to tell people what’s going on and admit I don’t feel good.  I even had to break down and hire someone to help me from time to time with simple things like grocery shopping and helping me to clean my house while I work side by side with them.  I don’t want to give in to my body, I want to try to work with it and try to live as normal a life as I can.  This has meant letting my pride go and admitting I will never be “super-woman”.  (Why do we even try to do something so impossible anyhow?)

Sometimes I am really annoyed with the timing of this latest outbreak. I can’t help asking “Why me?  Just when I’m ready to really do some serious work on manuscript # 1 and launch into finishing the second edit of manuscript # 2 this happens…what the hellllllllllll?”  It’s okay to let myself rant, then, I try to remind myself that because I’m not feeling well I have much more time for reading on days when I have to stay in bed after work, or on days when I just can’t move because it hurts too much.  Sure my house is not the world’s cleanest, but I’m trying to focus on the things I’m doing right so that I don’t end up in a downward spiral of “I’m just not doing enough”.  Additionally, it isn’t helpful to compare to how things used to be, because that just isn’t my reality any more.

I’m really thankful to all of the friends, fellow-writers, retreat attenders, and fellow-church goers who have boosted my spirits during this time.  I think when things are bad, you can’t hunker down and wait for the storm to pass. You have to strike up the band and try and do a little merry jig, while your friends prop you up because your legs might not be working so well that day.

I can only imagine that I am not the only person who suffers from a malicious, pain rendering condition.  There must be tons of other artists out there who suffer in silence.  I respect that some people feel more comfortable doing this.  However, I felt it was important to share a small section of my story, because I think it’s possible to pursue your dreams even when your corporeal reality isn’t working in the way you want it to.  Through listening to each other’s successes and pitfalls, I can’t help believing that our writing world will continue to be a place where people can feel listened to and supported.

A shout-out to Writer’s Workshop Word Cloud and Retreats West is in order because without both of these fine organisations, I know that I wouldn’t have been able to press on through the clouds of darkness that threaten to prevail over my daily struggle.  I have met some of the greatest, most supportive, and kind-hearted people of my life.  These friends and acquaintances have inspired me to keep going.  I am most grateful to Tom who is always making me laugh & sharing delicious cheeses amongst his other great human tricks.  I cherish my Nurnberg Stake church family: they are forever some of the best people I know and love.

I hope that others who experience either dark periods of health, family crisis, financial upsets, or other hard times will know that in sharing your story it helps others to know they aren’t alone.  There’s nothing wrong with sharing.  It isn’t whining, it’s letting others know they need to give a helping hand.  Nothing makes me feel more loved than knowing my efforts have helped someone else who’s having a hard time.  Being on the receiving end is just as nice.

4 thoughts on “Living in the Dark

  1. When we don’t know the truth of any situation, we are only left to guess. That is not a very accurate way to understand any problem. I have lived most of my life, not letting others in. So glad when family members are wiser. Thank you for sharing, it makes prayer more personal and effective. Your Grandmother

    • Thanks so much for commenting, it means a lot to me! I just hope that others will feel comfortable sharing their stories also about dealing with loss, pain, health, etc… so they’ll know they’re not alone. The prayers are always appreciated (very much)!

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