Friday, November 8, 2013

Earlier this year, I published a book in which, without giving too much away, one of the significant characters is very ill. The ailment is one that, at that time, could not be adequately treated, let alone cured, a condition that inevitably resulted in a shortened lifespan. Despite this heavy and very real struggle, the tale is a hopeful one, a celebration of love that endures in the face of trials and heartache and uncertainty, love that brings joy in the midst of sorrows.

I wrote the book a few years ago, when I was healthy and fully anticipating being so for decades to come. As you can imagine, the struggles and difficulties these characters faced struck me with added force as I went through edits and revisions in the midst of my own recently-arrived chronic illness. So much of this story reflects what is now my reality.

The response was generally quite good, but an email I received shortly after this book was published caught me by surprise. “No one,” the email informed me, “wants to read about someone who is sick.”

Authors understand and accept that everyone’s taste in books is different, that each individual reader comes to a story yearning for something specific, and it isn’t possible that any one tale will fulfill that expectation in every person who reads it. Some people will like what we write. Some won’t. That’s okay. We are okay with that.

But I have found myself unable to entirely shake that one sentence, those ten words. They hover in my mind, pricking at the tender places in my soul. It took a while for me to realize that the staying power of that declaration had absolutely nothing to do with criticism of a book I had written. Absolutely nothing. I wasn’t even bothered by the fact that this reader didn’t care for this particular book. It has happened before and will happen again. Rather, the ache I felt came from being that person “who is sick” and has felt the impact of that sentiment in my own life.

When an illness is new, there is an outpouring of concern and condolences and empathy. It is a gift, a rare bit of sunshine in a suddenly cloudy life. It is hope in a very palpable form. But something changes as time passes. Some amongst that person’s circle of acquaintances—thankfully not all, in my experience not even most—grow impatient with the whole thing.

“Well, if you’re not feeling better, you must be doing something wrong.”

“I know, I know. You ‘don’t feel good.’ You never do.” 

“This disease isn’t new anymore, so you really ought to be okay with it by now. Maybe you need to work on your attitude.”

“I have done a lot of things for you lately, why can’t you just do this one thing?”

Sometimes the response is more subtle. A roll of the eyes. A quick change of subject if the topic of health happens to come up. People who simply won’t talk to you anymore. Often it’s an almost imperceptible aura of annoyance. After a while, what is really being said becomes clear. “I don't want to hear about or deal with or be bothered with someone who is sick.”

When you are the person who is sick, it breaks your heart. You don’t want to be a downer. Indeed, you honestly wish none of this were going on, that it would magically all go away or would suddenly be really easy to deal with. You try hard to keep to yourself just how much you’re struggling. You purposely stick to other topics because, as tired as some people get of hearing about your illness, you are far more tired of being ill.

You learn to not talk about it. You learn to pretend everything is fine. You learn to close off your heart when someone makes it clear that the empathy ship has sailed though you are still on Illness Island looking out over a vast ocean you know you’ll never cross. There are moments when you feel utterly alone.

Then someone comes along and puts an arm around your shoulders, or listens as you pour your broken heart out, or simply chooses to stick around even when you’re struggling or frustrated or not getting any better. The dismissals and unkindness still sting, they still wound an already fragile soul, but you learn to find strength in those who do not desert you. You cling to those moments of support and understanding. You remember that, while there are certainly people who don’t want to be bothered with someone who is sick, there are many others who can see the person and not just the illness.

So if there is someone in your life who is struggling, whatever their struggle, be that kind of friend who sees them through and loves them even when things look bleak. They need it likely more than you know.


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