Coping, Favorites, Mental Health

What Matters

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?

Coping

I Miss Myself

I got to be myself for a few hours Saturday night. I drove the convertible with the top down and the radio way up. I sang along with Dave Matthews, falsetto and facial expression included. I sang so loudly I made my throat hurt. I danced in my seat. I laughed when other drivers pointed at me.

Then the migraine hit and I sobbed, knowing that it may be months before I get another glimpse of this wonderful person I so rarely get to be.

I miss myself so much.

Chronic Migraine, Community, Coping, Friends & Family, Reader Stories, Society

Invisible Illness Awareness Week

For National Invisible Chronic Illness Awareness Week this week, its sponsors at Rest Ministries and volunteers have created and compiled a tremendous array of resources for those of us with invisible illnesses.

  • Presentations from the virtual conference cover topics from relationships to work to identity. Several presentations remain this week, but all of them are archived for you to listen to whenever you need a boost.
  • The website has a large collection of articles on a wide range of issues that folks with invisible illnesses — and those who love us — confront every day, like the difficulties of explaining an illness to friends, how to respond when someone is insensitive, and how to help people with invisible illness.
  • The statistics and stories section has some shocking information about chronic illness. Like that nearly half of Americans have a chronic illness, 96% of which are invisible, and the divorce rate among the chronically ill is higher than 75%.

Poke around the site for a bit. I bet you’ll learn something new that will help living with an invisible illness a little easier.

Chronic Migraine, Coping

Finding My Spark

“I’m back,” I thought as I wrote Migraine’s Not the Boss of Me. “Kerrie’s back,” Hart said to me after reading In Gratitude for My Imperfect Body. Neither of us were excited merely because I’d posted or even that I’d written about feeling better and practicing yoga. We were both struck by the style in which the posts were written — we both heard my long-absent “voice.”

When I began to write last week, I experienced the same uncertainty as when I first started blogging. I felt awkward and unsure about my writing; not convinced I was presenting my thoughts accurately or representing my ideas in the “right” way. (I think this is pretty common when someone publishes their writing to a new audience.) My nervousness eased when, with Hart’s confirmation, I saw I’d fallen right back in as if I’d never left. The pile of draft posts I’ve written over the past few years is entirely different. Even the ones I deemed complete weren’t publishable. They all sound flat and hollow. There was a spark missing in those mediocre drafts.

There was, I realized in a sleepy haze in the middle of the night, a spark missing in my life. I rolled over, barely awake, and smiled as I thought of everything I could do today. I feel like I have options for the first time in years. The available choices in a day haven’t really changed — I could blog or cook or craft or clean — but anything seems possible and, even better, exciting.

I can speculate on reasons for this shift: Migraine has less of a physical, mental and emotional impact than it did. The episodes are less frequent and less intense. I am able to recognize the accompanying emotional fluctuations as a symptom of the illness instead of being carried away by depression. I no longer feel like migraine will suffocate me.

Whatever the reason, I’ve got my groove back. The passionate, creative, enthusiastic woman I thought I’d lost to migraine was only obscured, not destroyed. I’m glad I’m here to celebrate.

Coping

In Gratitude for My Imperfect Body

For many years, I felt as if my body had betrayed me. The physical exhaustion, mental fogginess and excruciating pain of chronic migraine smothered my energetic, spirited personality. I was young and should have had strength and stamina, but was instead trapped inside a broken body. In believing this, not only did my body appear defective, so did my entire self.

Tired of being angry with my body — and, by extension, myself — I focused on everything my body does well, like walking, breathing, circulating blood. From this view, the constant, mundane tasks to which I give no thought become small miracles. Yes, my neurological system misfires regularly, but that this complicated series of systems works at all is far more profound than the frustrations with its quirks.

How could my body have betrayed me? There is no contract, no guarantee that a person will be healthy and pain-free. In fact, the expectation that a body should behave perfectly has come to seem absurd. The human form is a complicated piece of machinery; any one body is bound to have some flaws.

With my new perspective has come an unexpected gratitude: I am now thankful when my body aches after I’ve been laid up with a migraine for a couple days. That deep itch to move and stretch, to use my body instead of just inhabit it, reminds me how resilient this sometimes bedridden body truly is.

Tonight I will go to a more strenuous yoga class than usual. My movements may not be as effortless or graceful as other students’, but the mere fact of my participation is a greater triumph than I could imagine a month ago. I will stretch and twist, bend and balance from the tremendous strength that I now know lies within my beautifully imperfect body.