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With a Master of Fine Arts in Creative Nonfiction degree (Goucher College, August 2014), I am looking at a new phase in my life. From 1992 to 2009, I served as Founding Executive Director of Miriam's House, a residence for homeless women living with AIDS. I left this position when Chronic Migraine Disease overtook my ability to do my job. Now I hope that a writing career will both accommodate the migraines and give me a creative, productive outlet. And soon, September 4, I will launch my Inkshares author page in a bid to hit the 1,000 pre-order goal in 90  days. The book I want to publish is "Nowhere Else I Want to Be," a memoir of ten of my years at Miriam's House.

28 July 2014

Am I Afraid of Getting Well?

I am scheduled for a treatment tomorrow that has a chance of dramatically reducing my migraines. You'd think I would be happy and excited and hopeful. Nine years of chronic pain may be over! A normal life may be possible!

Today I am not happy, not excited, not hopeful. I'm worried. Maybe even afraid. And as I sat in meditation this morning unable to stop the tumbling thoughts about tomorrow's treatment and its possible effects, I wondered if I really wanted to be better, after all. Some of the fears made a lot of sense. Until they didn't:
  •  The treatment might not work -- my neurologist isn't very optimistic, given my history;
  •  Those needles poking into the back of my head and being maneuvered around will hurt;
  •  There's a chance of a bad reaction to the injections;
  •  If it doesn't work, I'll be really disappointed;
  •  If it does work, I'll be ... scared.
What? Scared about maybe being well? 

The thought shocked me right out of my meditative reflection. What kind of web was I caught up in?

Photo by William Marsh

It wasn't easy to sit with then and it's not easy to admit now. But I believe that self-awareness and honesty are essential to healing of any sort. And it's incumbent upon me to explore the strange phenomenon of fearing getting well, first for myself and second for any of my readers that may be helped by knowing they're not alone.

(Warning -- this is going to be a longer post than usual.)

I remember learning in college about fear of failure and fear of success. The first seems normal, the second, weird. But it's real and there are lots of articles about it, mostly how to understand and get over it. 

When I Googled "fear of health" and "fear of getting better," I found forums and support sites for people with various mental illnesses who needed to talk about their fear. I found one  blog post about the fear of getting well after years of long-term physical disability and pain. But I found nothing (at least on Google) to indicate the existence of professional study or understanding of this phenomenon. Yet people are worried about it, and many express shame and embarrassment about their feelings. Which seems another reason to write this post.

As I sit here struggling with my feelings, a few reasons for them -- the ones that are easy to admit and talk about -- pop up quickly:
  • I can't get past thinking about how tired I always am, how I need a nap almost every day and a good eight hours of sleep as well. As nonsensical as it sounds, I worry about getting enough rest if the migraines go away. I won't have them as an excuse any more.
  • I'll graduate this weekend with a Master of Fine Arts in Creative Nonfiction (Goucher College, a wonderful program). I'm glad and excited. But common wisdom says you don't make a living as a writer. You have to have a day job. I haven't been in the work force since the end of 2009 and I'll be sixty next spring. Even if I do get well enough to work, who will hire me?
There are other realizations clamoring for attention from the dark place in my consciousness where I cast them in order to not have to think about them:
  •  I've learned how to live as a disabled person, my whole life is structured around coping and managing and doing-in-spite-of. I afraid I don't know any longer how to live as an able person.  Maybe it's easier to stay ill.
  • I'm the one people admire for getting a degree despite the constant pain. What's there to admire if the pain goes away?
  • Who am I if the pain goes away?
In 1990, I gave up on years of study and the hope of a career as an opera singer because a cyst on my vocal cords prevented me from developing the stamina, finesse and pitch security needed for a professional career. I asked these same questions then: Who am I if not a singer? What will I do with my life now that I'm not traveling to New York bi-weekly for lessons and coaching? People admire my voice: what's there to admire if I don't sing any more?

Somehow, those questions are socially acceptable: we would all freak out if primary ways we identify ourselves -- talent and career -- were snatched from us. It makes sense. Not so freaking out about getting healthy, of giving up the identity we've developed during the long and difficult months and years of ill health.

Yet it's surely true that we've invested a lot of time, heart, spirit and body into learning how to be ill as well as we can. And looked in this way, doesn't it make sense that losing that identity would cause concern?

I have no magic answers. I just know fear of getting well is real for me and for other people out there, although shame makes us want to hide it.

Life has taught me to bring what's hidden into the light. So consider this post an attempt to shed a bit of light on a reality we hide: that we can  become so identified with our mental or physical illness and all we've done -- all the hard work, the difficult changes we've negotiated and the stamina we've developed, as well as resulting spiritual and emotional growth -- that we can actually fear losing it.



I welcome your comments, either below with Google+ or at carold.marsh@gmail.com

4 comments:

  1. You are not alone, Carol. As you well know, almost two years ago, I was diagnosed with Alzheimer's disease. For various reasons I began talking about it openly and, when I noticed how scared people were of the disease, I started to write a blog about it and then to speak about it. I was interviewed by the Washington Post and on national TV. Because of the stigma around the disease, many caregivers and people with Alzheimer’s responded positively to my openness. Within a small circle I became well known. I had a new, wonderfully rewarding vocation: Professional Alzheimer’s patient. I actually developed a certain gratitude for my disease (long story). It wasn’t so much the fame (well … a little bit it was the fame); it was the knowledge that I was making a real contribution to the lives of others. .
    Then suddenly I didn’t have Alzheimer’s (another long story). Of course, I felt relieved. But my greater feelings were of disappointment. Would I have to give up this identity that had rewarded me so? Could I do anything remotely so valuable? Now what?
    No matter the identity, we depend on it to order our life, even to give our life meaning. For the first half of my adult life, I had untreated depression. I thought of myself as a “depressed person.” Then new medication dispelled virtually all my depression. I was ecstatic without any sort of disappointment, not even a sliver … I thought.
    Still, however, being a “depressed person” lingered for many years (actually over twenty years until the present) as a part of my identity. I even noticed little benefits to my previous depression. I hadn’t really noticed it until reading your post today, but I actually missed my depression.
    Identity is a powerful part of us, perhaps the largest part. Regardless of the pain it has brought, we can forgive ourselves for that little sliver of disappointment as it walks away.

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    1. David -- I try to answer comments a lot quicker, but a change in how comments happen on this blog has confused me a bit. Sorry for the delay.

      For our other readers, David and I are dear friends of some 25 years, and I help out by editing some of the posts on his blog, Watching the Lights Go Out (http://davidhilfiker.blogspot.com/).

      David, so much of how I am able to write and be honest about my inner workings has to do with what I've learned from you over these years, starting with your depression in the 1990's and how your sharing openly cut through normal politeness (and b******t) to help us all to greater authenticity. And I do agree about the "little benefits" of our maladies. That you end your comment on a note of forgiveness is noted and welcome.

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  2. Many times when in a depression I was able to hide in my shell, I had reason to retreat, act as I wanted to and set my own terms. Knowing that I had to break the shell and take the world on its terms was daunting I understand the fear of letting go of pain- physical or mental. I think it is normal and it takes honesty to own up to it. I admire that in you.

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    1. William -- I'm sorry it has taken me so long to respond to your comment. I've recently changed how comments happen on this blog and am unaccustomed to it as yet.

      The way you put this is profoundly simple. On my own terms / on the world's terms -- how hard it is to get to that difference. On my terms, I'm a migraineur, you and David (above), depressants. On the world's terms, we are asked to let go of those identities.

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