“This is not what they signed up for, not at all. . . . Redefinition is a nightmare — we think we’ve arrived, in our nice Pottery Barn boxes, and that this or that is true. Then something happens that totally sucks, and we are in a new box, and it is like changing into clothes that don’t fit, that we hate. Yet the essence remains. Essence is malleable, fluid.” Anne Lamott, A Slow Walk into the Amazing Now
Anne Lamott’s writing has hit me straight in the heart once again, this time in an essay about a friend who has ALS. Usually I’d add my reflections, but this doesn’t need much. Almost everyone reading these words knows that redefinition is a nightmare — a gut-wrenching, life-twisting, heartbreaking nightmare that feels like it will destroy the very essence we hold dear. Amidst that, it’s difficult to see that one’s essence not only remains, but is stretching toward the light and growing ever stronger.
I spent many years lost, not knowing who I was under the onslaught of chronic illness. I mourned for my lost self, sure I’d never see her again. Even though I couldn’t see it, my essence was still there. It was, in fact, what carried me through, changing in the ways necessary to keep me going. In this year that I’ve had remarkable physical improvement, I still haven’t seen the Kerrie I used to be. That’s OK. I like this redefined version so much more.
Migraineur: a person who has migraine (according to Merriam-Webster)
I use the term “migraineur” regularly to refer to people who have migraine. I’ve deliberately chosen “migraineur” over “migraine sufferer” in my writing because the latter makes us sound like victims, which I refuse to identify as. I also believe suffering is a state of mind and that one can have an illness without suffering from it. As the Buddhist wisdom says, “pain is inevitable, suffering is optional” — embracing that belief has been a life-affirming, empowering shift in my attitude toward chronic migraine’s role in my life.
Now I’ve learned from Am I a Migraineur? on the fabulous blog Migraine Monologues that “migraineur” has it’s own controversy. Some people believe that calling oneself a migraineur is tying a person’s identity to migraine. I had no idea it carried that connotation and, while I understand the argument, I don’t buy into it personally.
Maybe because I don’t really use migraineur as an identifier (I rarely say “I am a migraineur,” preferring “I have chronic migraine” instead), but to refer to someone or a group of people who have migraine — such as, “…anything that helps families better comprehend the plight of migraine is a boon to all migraineurs.” For me, “migraineur” is a less wordy way to say “people with migraine,” not an identity.
Or maybe I’m so opposed to “migraine sufferer” (and am not thrilled with “migraine patient”) that I have no room left to be offended by the alternatives!
What do you think? Do you have a preference for “migraineur,” “migraine sufferer,” “migraine patient,” “person with migraine,” or some other description?
After writing about the loss of identity that I experienced with chronic illness, I wanted to give some suggestions for rediscovering one’s sense of self. Most of the recommendations are time-intensive and arduous — like finding a good therapist, practicing mindfulness, and learning about Buddhist psychology — but there’s one little gem that brought me rewards far greater than it’s $15 price tag.
It’s called Strengths Finder 2.0and is marketed as career guidance, but that’s beside the point. It’s a book, but it’s mostly a personality quiz that you access online using a code in the book. As the title indicates, the quiz results focus on a person’s unique strengths, something that I had trouble doing after years of migraine and depression. Instead of reminding me of the weaknesses I’d spent years dwelling on, the quiz refocused my attention on my strengths, which was invaluable in regaining a sense of my true self.
I took the Strengths Finder quiz two years ago, when I was too sick to put the findings into any practical use. I still haven’t applied them directly to my percolating career goals, but I have benefited enormously from the reminder of my core characteristics, which remain untouched by chronic migraine. The peace of mind of remembering who I am was well worth $15.
“Because of my illness, my faults are in plain view. It’s simply too hard to hide that I’m selfish with my time, can be terribly insecure about the most bizarre things, and have great intentions with little follow-through.”
This excerpt from Friends, Family & Illness, a January 2007 post, hit me hard when I re-read it. I stand by the assertion that my faults are in plain view because chronic illness takes all the energy that might otherwise go toward hiding them. What I take issue with is the list of my “faults.” These are not faults, nor are they inherent to being me. They are all the factors of having debilitating chronic migraine.
Six-and-a-half years ago, migraine had completely obscured my sense of self. What I called selfish was me desperately trying to take care of myself and reduce the ravage of migraine on my life. Insecurity about bizarre things? That was keeping the pretense of health when I was terribly ill. Not following through? Following through on promises to others is hard to do when you’re so sick that getting to the bathroom and feeding yourself are your main priorities in a day.
My health had been in steady decline for, oh, 20 years before I wrote that original post and in free fall for at least five. I was a few months from adding constant, severe nausea to my list of symptoms. I hadn’t yet reached my worst, most debilitating years of migraine, but they weren’t far away.
At the time, I was aware that I was floundering in search of my identity, which I thought was buried under migraine. Now I see that I was trying so hard to retain a semblance of self that didn’t include migraine that I perceived myself as someone I wasn’t, nor had ever been. I was trying so hard to pretend I was normal despite the constant seismic activity in my body that I completely lost sight of who I was.
Identity loss. Now that’s an aspect of chronic migraine that doesn’t even make the other migraine symptoms lists, but it caused as much upheaval as the pain and nausea ever did.
It doesn’t matter if we do things right, “doesn’t matter if we do things according to the book or what we expect or what others expect. What matters is the quality of heart and integrity we bring to what we do. . . . What matters is remembering that we care about as many moments of our life as possible.” -Tara Brach
So often I feel like I’m failing. Failing my family and friends by not keeping in touch, failing my husband by not being the equal partner I signed up to be, failing the folks I write for at Migraine.com by not submitting more posts. Failing you by not writing more often, by not responding to comments, by not updating my blogroll. Failing myself by not having a career, by not being able to support myself financially, by not doing more activities that nourish my soul.
The funny thing about these “failures” is that they are not my fault. I would participate in the world if migraine and chronic daily headache did not drag me down the way they do. This is not to say life would be cake and balloons if I didn’t have migraine; I’d still have challenges and frustrations, but chronic illness has hijacked my personality. I am not the unproductive, antisocial being that illness has turned me into. And so I fret. Fret about the difference between who I am fundamentally and how I behave because of migraine.
What if, instead of dwelling on what I cannot achieve, I view my life the way Tara Brach describes? What if I see the quality of heart and integrity I bring to everything I do, the intense focus I give to even the most mundane day-to-day tasks? Then I am not failing at all. In fact, I am overflowing with love and purpose and gratitude.
What matters to you?