Category Archives: Coping

Chronic Illness and Living Vicariously Through Books

I have had a migraine for the past THIRTY SIX days. Surprisingly, I have not yet gone insane. I have been more or less glued to my ultra cozy bed in my dark room. Trying to make myself as comfortable as possible has become my full time job. My muscles ache, my head is pounding, the room is spinning, my ears are ringing, and my stomach is churning. I feel like I have been violently struck in the head every day for the past 36 days.

Seriously, even my hair hurts. Thanks to the magic of the central nervous systems, migraines manifest themselves in a variety of bizarre symptoms like allodynia. Allodynia is the experience of pain from touch that should not be painful. When I have a migraine, the pain nerve cells in my brain and spine get over-excited. The sensory signals in my central nervous system get mixed up and cause normal touch to produce an abnormal painful result. A neurologist recently tested me for alloydnia by lightly running a paintbrush over the skin on my forehead. Just that light touch caused intense pain in my head.

Migraine sufferers who experience allodynia are more likely to find that their migraines don’t respond to triptans, which are one of the most effective families of migraine drugs. Despite years of trial and error triptans have never worked well for me. Because I haven’t found a medication that aborts my migraines, I run the risk of developing migraines that lasts for weeks. These long-lasting migraines are called status migrainosus or intractable migraines. They are pure hell.

I have kept my sanity intact through these long weeks of pain using the most powerful tool at my disposal: distraction. I binge watch every episode of Parks and Rec through half open eyes. I crochet beanie after beanie. I listen to podcasts and gentle music. I take more naps than a toddler. Nothing takes me away from my pain, however, like the emotional power of a good novel. I recently finished listening via audiobook to the final novel  in Italian novelist Elena Ferrante’s Neapolitan series, The Story of the Lost Child, and I enjoyed it so much I am ignoring my angry head to tell you about it.

Me circa 2000. Wishing I wasn't a muggle.
The author circa 2000. Wishing I wasn’t a muggle.

The Neapolitan novels follow the lives of two women, Lenu and Lila, who were born and raised in the slums of Napes in the 1950s. Through the lens of their friendship, Ferrante paints an intricate portrait of life and death that is impossible to not get swept up in. While reading the novels, my life became entwined in the loves and losses of the two girls. I ached with them and loved with them. I grieved with them and grew old with them. Thanks to the Ferrante’s skill as a writer, I peeked into the dusty corners of their lives and I saw myself.

The Story of the Lost Child (Neapolitan Novels, #4)The Story of the Lost Child by Elena Ferrante
My rating: 5 of 5 stars

I am blown away by Elena Ferrante’s skill as a writer. The Neapolitan novels are some of the most honest and moving pieces of fiction I have read in years. These novels are about many things: friendship, loss, childhood, daughters, violence, politics, writing, reading, love, feminism, mothers, sex, education, Italy. Through the experiences of two Italian women, Elena Ferrante beautifully captures the complexity of human relationships and all of the suffering and joy they bring.

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Truly great novels offer distraction and connection at the same time. Truly great novels soothe broken hearts and aching heads. They offer nourishment, solace, and comfort. Truly great novels simply make life more bearable. My pain is powerful but so are words. They allow me to live many lives and they help me fall in love with my own.  And for that I am grateful.

“Books are mirrors: you only see in them what you already have inside you.”
― Carlos Ruiz Zafón, The Shadow of the Wind

 

The Healing Power of Self-Compassion

On Monday morning, I experienced the simple bliss of waking up without a headache. Over a year ago, my neurologist told me that waking up every morning with a headache is a sign that I am over-using medication (triptans and Ibuprofen in my case) causing rebound headaches. Though I rarely treat my headaches and migraines with any medication that can cause rebound, my head is still wracked with pain most mornings before I even open my eyes.

Monday morning was different, though. I woke up pain-free and ecstatic to spend the day with my boyfriend who is visiting me after a long summer apart. We enjoyed coffee and breakfast together, and the pleasure of spending a pain free morning with the person I love the most made me giddy with gratitude and relief.

These moments of respite from pain are bittersweet and always too short-lived. Shortly after breakfast, I was hit with extreme fatigue. Nausea, light sensitivity, and eventually throbbing pain soon followed until I was fully immersed in a migraine. I went from a happy young woman ready for a beautiful day to an exhausted, brain-dead dark-dweller. In my pain and disappointment, I cried and raged and internally bashed my body for being useless for little more than misery or pain. Even after two years of chronic migraines, every single migraine feels like a betrayal.

My body deserves my compassion, not my rage.

I know this but have to remind myself of it daily. I expect a level of compassion from my family, friends, partner, and doctors that I have trouble giving myself. When a migraine sets in my emotional strength is drained, and my mind wanders easily to negative, self-critical thinking patterns. There is nothing unhealthy about complaining externally or internally when you’re in pain, but when you’re in pain for so much of your life those thinking patterns can take over and lead to isolation and a further diminished quality of life.

Continue reading The Healing Power of Self-Compassion

Finding Fulfillment Despite Pain

I’m sitting at the base of a Jeffrey pine tree on the north shore of Big Bear Lake watching the light change. Nuthatches, phoebes, northern flickers, and bluebirds flit around the tops of surrounding trees catching as many insects as they can before nightfall. There must be close to a hundred birds in my line of sight – more than I’ve ever seen in such a small space.

After spending more than three weeks in bed with nonstop migraines, the quiet peacefulness of this moment is overwhelming. My brain is still foggy and slow, and I’m still queasy enough to make eating hard. But the sun on my legs and the energy of the birds nourish me more than any amount of rest or medication. For the first time in almost a month, I feel like myself rather than a migraine with the shadow of a person attached. Moments like these are what keep me going.

Chronic illness is a thankless and demanding partner that forces the sufferer to make sacrifice after sacrifice.

It is completely normal for those of us with chronic illness to wrestle with feelings of inadequacy and a diminished self-worth. I have no career or children or social life to offer fulfillment, so I must seek it elsewhere. Every day I put effort into appreciating the small and beautiful moments, but sometimes it just isn’t enough.  Continue reading Finding Fulfillment Despite Pain