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Redefinition is a Nightmare, Yet the Essence Remains

“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.

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Having Nothing Left to Give

When writer Anne Lamott’s brother said his wife was near death, she desperately wanted to go visit and be there for her family, but was momentarily physically and emotionally disheveled from her own life stuff. She called a friend who said, “Dearest, you do not have what John and Connie need. You don’t have it to give, because you are kind of crazy, and depleted. What if you got centered, and sane and full, through rest, and friends and hikes? Then you will know what to do, and when.”

“You do not have it to give.” I spent years trying to give to others what I didn’t have to give. I wanted to, very much, so I kept trying, despite being completely depleted by chronic migraine. I was never satisfied with what I gave. I wasn’t present enough, wasn’t caring enough, couldn’t follow-through when I wanted to. I was physically incapable of providing the support I wanted to give. But instead of recognizing my limitations, I kept on pretending I was OK. I wasn’t satisfied, nor were my loved ones. They knew I wasn’t really there, they knew I probably wouldn’t keep my promises. I hated this.

When I finally got that I couldn’t give away what I didn’t have, I withdrew. I knew that I had to get “centered and sane and full” before I could really be there for others. Sounds wise, except that I was so sick and wrecked that I withdrew for years. I’m still withdrawn, still focusing so much on how I feel and taking care of myself that I’m not as engaged with my loved ones as I want to be. I hate this, too.

But it’s what I have to do. I am better – so much better than I was – but I continue to have migraine attacks more days than not. I can now stop some migraine attacks with medication, but I still lose at least few hours each time one comes. And sometimes two or three come in a day.

I am over the moon over how much better I am because the relative improvement in my life is so large, but I’m still quite sick. My version of feeling good has far more pain, fatigue and brain fog than a healthy person’s definition. I’ve adapted to that and am (mostly) OK with it, but it causes a lot of hurt and confusion for my loved ones. If I’m doing so well, why am I not calling on a regular basis? It’s because doing “well” takes an unbelievable amount of physical, mental and emotional energy. That’s so hard to wrap my own mind around that I can hardly expect people who don’t live with me to do so.

Even on great days, my pain reaches a level the comparative pain scale describes as “very noticeable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you a shot.” That’s just pain, it doesn’t account for all the other symptoms of migraine, the most prominent of which are, for me, fatigue, brain fog and nausea. I have to consult with migraine before I do anything. I have to attend to all the same things of life that everyone deals with on a highly compressed and unpredictable time schedule. I can go from feeling great to laid up in less than 15 minutes. Despite planning nearly every day to call someone after I get the absolute necessities of life taken care of, I’m rarely able to make the call. By the time I get there, I have nothing left to give.

Getting rested and centered and full before giving to others may make a person most available to their loved ones, but what if you never get there? Where’s the balance between taking care of yourself and being there for the people who are important to you? I’ve gone from one extreme of the continuum to the other and am now trying to move myself more toward the center. I can’t figure out how to do it in a way that doesn’t compromise my own well-being.

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Gratitude

Having just drafted a post on gratitude for Migraine.com, the topic was fresh in my mind when I couldn’t sleep the other night. Instead of obsessing over why I was tossing and turning, I mulled over things I am thankful for. Each day I list three things I am grateful for as part of my strategy to keep chronic migraine from overwhelming me; this is more of a global list. As I feel like I’ve been a complainer on here lately, I wanted to share it with you all so you see that I’m not miserable and depressed! And to share how rich a life can be even with chronic illness.

  • A husband who understands how debilitating a migraine attack is and often has a better grasp on how I feel than I do.
  • My family for being loving, caring and messy in the way only family can be.
  • Migraine friends who truly get what my days are like and non-migraine friends who try.
  • The people I get to connect with through this blog. I’m not able to be as connected as I’d like, but everyone who reaches out to me touches my heart and is in my thoughts.
  • Old friends who wait patiently while I burrow in my self-imposed migraine nest of rarely communicating with anyone.
  • My sister, who keeps calling, texting and playing Words With Friends with me even when I retreat into migraine solitude.
  • The amazing team of doctors that I kind of stumbled upon when I moved back here.
  • People who knew me before the chronic migraine became too severe to take Advil and ignore — the ones who are so understanding because they remember me as vivacious.
  • My nieces and nephew, with whom I was fortunate to see often when they were young. I’ve missed them so much the last five years, but am so proud of the teenagers they have become.
  • COBRA and pre-existing condition health care coverage, which allow my husband to pursue his dream of starting his own business.
  • Jack Kornfield’s guided meditations, which showed me how to heal, particularly Guided Meditations for Self-Healing.
  • Tara Brach, whose guided meditations and podcast talks have taught me how to experience emotions without being carried away by them. (She has also published a great book, but my favorite resources are those on her website, all of which are free!)
  • How to Be Sick, a book by Toni Bernhard that applies principles of Buddhism to life with chronic illness in a straightforward, non-preachy manner.
  • The Anatomy of Hopeby Jerome Groopman, which taught me that hope is not a blind wish, but the belief that one can live a good life against all odds.
  • Anne Lamott’s writing, especially in the writing guide Bird by Bird and her willingness to share imperfect, thought-provoking and hilarious missives on Facebook.
  • That I was able to attend some of the American Headache Society symposium and felt like my engaged, intelligent self while there. And for the dedicated, compassionate, caring physicians, psychologists and researchers I met there.
  • That Excedrin Migraine changed their ad in response to the outcry of The Daily Headache readers.
  • Getting into the groove of writing and that feeling when I get a sentence or phrase just right.
  • The friends who are so supportive of my writing.
  • Being able to read books again. Proof that chronic migraine can improve and we can get back the things we lost.
  • Doctors who pursue unlikely avenues of inquiry.
  • That I’m a natural optimist.
  • Pinterest for migraine distractions. Facebook for keeping me somewhat connected to the world even when I’m hibernating. And Words With Friends for giving me a chance to play with loved ones I rarely see.
  • Friends who don’t mind if I sit on their couch like a zombie because I’ve had a migraine for a week and need new scenery. Even when I smell like a zombie, too.
  • That I know what the basic structure of my book will be. No idea when I’ll have the energy and mental wherewithal to write it, but it will be a tool to help people with chronic illness live happy, rewarding lives.
  • Baking. Nothing I bake is safe for my severely restricted migraine diet, but the process of baking brings me so much joy.
  • Fall weather in Phoenix.
  • My adorable yellow house in Central Phoenix.
  • Oven roasted Brussels sprouts with garlic added. Really.
  • That sleep is usually easy.
  • The quirky, funny, unconditionally loving pets I’ve been so fortunate to live with. A pet is too much work for my life right now, but memories of Cricket, Kayla and Cleo keep me smiling.
  • That the 2012 presidential election is over.
  • My fantastic neighborhood yoga studio.
  • A year-round farmers’ market that’s indoors in summer.
  • The smell of rain in the desert.
  • My perfectly sized and shaped bathtub.

Yesterday I dreamed that a doctor told me I was all out of treatment possibilities and that suicide was my only option. I kept telling him that I wanted to live and he wanted to know why since I had such terrible and frequent migraines. I said, “Don’t you see, I have a great life? Of course the migraines are awful, but they aren’t the sum of my life. I have so much to live for.” I was so grateful to wake up and know that doctor was totally wrong. There is never an end to treatment options. It has been almost a year since I first felt the joy of finding a treatment that helps and I’m thankful for every day of improvement since then (even if I grumble about it sometimes).