Category Archives: Coping

reading with chronic migraine

Life Without Books: Mourning My Migraine Sacrifice

Not all of the friends lost because of chronic illness are made of flesh

The backs of shampoo bottles. Street signs and shop names. Catalogs and junk mail. Words swirl in my mind all day long. My eyes are drawn to words – in the car, in the shower, on the toilet, in the kitchen. A stack of papers on the counter is a temptation too much to resist for me. I have been accused of being nosey more than once, rifling through a friend’s mail.

The author and her dad and a book. 1993ish

In other words, I love words. A reader since age four, words have been a big part of my life for as long as I can remember. I hold my own memories and the stories I have read just as dearly. Anne of Green Gables was my bosom friend, dear to me as her living, breathing counterpart. Mary, Beth, Jo, and Amy March – the sisters from Little Women – taught me almost as much about feminity and independence as my own three sisters.

When I first encountered death at a young age – in its slow, stinking form of cancer – and its partner grief, I took to the page. I wrote a story – full of plaigarism, spelling mistakes, and hearts over the i’s like you would expect from a 9-year-old girl. It was morbid and a little silly, but it was the only way for me to make sense of something as big and unpredictable as death – through words.

Reading with Chronic Migraine? Yeah, Right

The author and her mom and a book. 1993ish

Eighteen years later, Chronic Migraine has changed everything. Chronic Migraine brings a lot of baggage – debilitating and diverse symptoms, ruined relationships and careers, destroyed dreams and altered plans. Among other things, Chronic Migraine brings me light senstivity, a headache all the freaking time, and a very different relationship with words.

I still love words. I devour podcasts and music and audiobooks regularly. Writing is a huge part of my life. But books – the magical, rough, fragrant physical objects with their coffee stains and barcodes – are no longer an integral part of my human experience. Chronic Migriane has stolen so much from me that it may seem silly to mourn the loss of books, but for me, it is devastating.

I can still read, of course, and sometimes I still do. But in the same way that I have to carefully moniter and allot the little energy I get each day, I have to regulate how and how long I use my eyes. Because the majority of my pain is in my head, my face, my eyeballs, and my neck, any tasks that involve visual and/or intellectual concentration is difficult and draining.

I am so, so, so lucky to have a paying job where I not only get to learn and advocate about my illness, but I get to use the very thing I love so dearly – words. Like so many other jobs, mine involves a computer screen. Every hour I spend looking at a computer screen or shopping in flourescent lights or walking in bright sunlight is an hour that I cannot spend looking at a book. I simply do not have the well hours and my aching eyes do not have the ability to do it all. Reading with Chronic Migraine is near-impossible.

From Dostoevsky to To-Do Lists

Chronic Migraine is a lot like this Twilight Zone episode. Haven’t seen it? Netlifx.

Giving up the pages of books is a small price to pay for what I have gained. Gainful employment and being active outside are two big parts of my life right now. To a healthy person, this sounds basic, but anyone with a chronic illness understands that both of these are HUGE. This time last year both were merely fantasies.

I still have mulitple library cards. I still go to the library regularly, with my laptop to write or sometimes to just walk up and down the rows of books, breathing deeply their smell, carresssing dusty spines, and remembering old friends. I still scribble in a Moleskin from time to time and skim too many political articles online.

Sometimes I pick up a book of poetry or short stories, but unlike in my healthy life, I rarely finish an entire volume. Reading with Chronic Migraine is a stunted, unsatisfying affair.  I read The Brothers Karamazov at 17 and at 27 I stick to mainly to the backs of shampoo bottles, street signs, and junk mail.

I miss books deeply – I miss seeing them on my nightstand and feeling them knock against my thigh in my purse. But mostly, I miss myself when I was reading books. I miss the days when, “Does my brain work?” and “Will I be able to open my eyes today?” were not the first questions that ran through my mind in the morning.

But I am coping – with this loss and the many, many others that I have sustained at the hands of chronic illness. I have faith that someday books will be a big part of my life again. Until then, I’m going to keep holding on tight to my library card – and my Audible subscription.

power of music

All in a Day’s Work: How to Use the Power of Music to Conquer Pain

“Fear – fear’s a powerful thing. I mean, it’s got a lot of firepower. If you can figure out how to wrestle that fear to push you from behind rather than stand in front of you, that’s very powerful. I always felt that I had to work harder than the next guy, just to do as well as the next guy. And to do better than the next guy, I had to just kill. And you know, to some extent that’s still with me in how I work. I just. ..go in.”

-Jimmy Iovine, Intro to “All In a Day’s Work” by Dr. Dre

alex wong unsplash
Strength prevails over fear. Image: Unsplash

Spend 30 seconds on this blog and you will discover that I am about as white as they come. As a white girl, I grew up with a certain amount of privilege. My childhood was rather free of adversity and, consequentially, gangsta rap. It wasn’t until my 20s when I was introduced to the world of chronic migraines that I began to understand the power of music and words.

I have had many sick, sad days during the past three years, thanks to the far-reaching effects of chronic illness. Migraines impact my career, my relationships, my appearance, my bank account, my home, my hobbies, and my dreams. Pain and nausea ebb and flow through my days, keeping me forever humble.

“It takes a special kind of motherf***a to live like this” Anderson .Paak raps on Dr. Dre’s superb track “All In a Day’s Work.” I couldn’t agree more, Anderson. Obviously, my chronic migraine life looks a lot different from Dr. Dre’s. The challenges that I face are worlds apart from the ones he overcame as a black music producer from Compton. The kind of self-assured anger that Dr. Dre’s music, and other music, feeds off of is exactly what I need, however, to get through my days of pain with strength.

The Power of Music

“One good thing about music, when it hits you you feel no pain.”                                                                                     -Bob Marley

Spend enough days in bed and you start to look at your interests as little life rafts. When dealing with chronic illness, you spend your entire days listening – to your breath, to your pain, to your symptoms, to your body. When it’s time to engage in leisure activities, like reading or listening to music, it’s difficult to turn off that longing. It’s difficult to turn off that effort to seek, to constantly strive for answers.

If you’re like me, you may find yourself clinging to words, finding little bits of yourself and small morsels of wisdom in art that make your life more bearable. That is the power of music. That is power of art. Like in life, in music you discover only what you seek.

I don’t pretend to understand the life of Dr. Dre or presume that he and I are similar. I don’t affirm that gangsta rap is the only kind of music that embodies a powerful anger. Beyonce’s album Lemonade, Pale Hound’s Dry Food, some folk by Bob Dylan and Joni Mitchell, modern folk band The Staves, and even pop goddess Taylor Swift let anger guide their art from time to time. And their music is more real because of it.

Expressing anger in art or music is a powerful step towards releasing its control over your thoughts and actions. Anger is natural part of the grieving process that everyone with chronic pain encounters. Expressing it through art releases its hold before it has a chance to turn into bitterness or despair.

Make Art. Conquer Pain.

power of music
Image: Wikimedia Commons

Listen. Look. Love. Sing. Create. Write.

You don’t have to show anyone. Buy a coloring book and some colored pencils online. Watch Bob Ross on Netflix and play around with watercolors. Journal or make a list. Creativity is a powerful way to heal, rest, and grow. It’s an old and simple concept, that I would like to believe is true – surround yourself with beauty, look at beautiful things, and you will start to notice the beauty in your own life. Pain begets pain – that continues to be a chronic illness truth. But so does beauty beget beauty.

The power of music can heal listeners. Those who create – those who sing, write, paint, dance – unleash the full power of art to not only heal but to set free.

The late Dr. Oliver Sacks wrote about the power of music in a 2006 edition of Brain: A Journal of Neurology. He wrote about how music helps people with different neurological conditions, like Parkinson’s disease and Tourette’s. He wrote about how music can bring people together and make people look within. The paper ends with a simple conclusion, “In the last 20 years, there have been huge advances here, but we have, as yet, scarcely touched the question of why music, for better or worse, has so much power. It is a question that goes to the heart of being human.”

Rise Above the Pain Playlist

(Not all tracks available on Spotify)

All in a Day’s Work by Dr. Dre

Formation by Beyonce

Bad Blood  by Taylor Swift (Ft. Kendrick Lamaar)

 

Image credit: Unsplash

3 Lessons and 3 Challenges After 3 Years of Chronic Illness

When I first began writing this article I titled it “4 Lessons Learned and 4 Things I Struggle With After 4 Years of Chronic Pain.” Only after I finished the first paragraph did I realize that it has only been three years since I have been in chronic pain. Time becomes a fluid, sticky substance when you are sick. Night and day blur into one long, sleepy and sleepless period of temples pounding and stomach churning. The light is abrasive to my eyes so it’s dark all of the time anyway. I sleep when I can, almost eliminating night and day.

At least, that is how it was – for longer than I would like to consider. Things are slowly, very slowly, becoming more normal. I’m becoming more diurnal, going to sleep early and rising
IMG_5401 (2) early. My brain benefits from the routine and the normalcy even if my social life does not .
Managing migraines is a bitch, as I am a learning. A bitch that requires commitment to lifestyle changes that are not for the faint of heart. Willpower has never been my strong point (I’ve been a nail biter as long as I’ve had teeth), but I’m exercising that muscle as much as I can these days. I feel strong and powerful and healthy, if not boring and monotonous. I have also recently adopted a sickly, high-maintenance kitten and continue to care for my elderly cat named Kitten, thereby cementing my transition to full on cat lady.

At least, it is all paying off. My quality of life is improving, my sensitivity to light and sound is decreasing, and my average daily pain level is slowly getting smaller. These gains do not come without lessons and struggles, however.

3 Lessons Learned from Chronic Pain

Processed with VSCO with g3 preset

  1. Deadlines are bullshit. For example, my three year pain-aversary was on July 3rd, and I intended on publishing this article then. Life got in the way of my plans, though, in the form of a birthday, an engagement party, a kitten adoption, an unexpected visit, and many vet trips. Oh yeah, and too many days given over to the migraine monster. I’ve learned to be easy on myself and to flexible with my schedule. My body is going to dictate my days anyway, it doesn’t help to needlessly fret over it.
  2. You have got to speak up. Owning your story is a way to make peace with it. Even more so, when your story involves illness and pain finding your voice becomes a crucial part of getting the medical care and having the types of relationships you  desire. Viewing your relationship with your doctor as an equal partnership will help you stay engaged and confident in your wellness plan.
  3. I’m stronger than I thought, and strength looks different than I thought it would. To some extent, this lesson may be a normal part of growing up. In a life punctuated by pain and migraines, it is a lesson that is glaringly obvious. At my sickest, most vulnerable, and most physically weak is where I found my greatest strength. It became a matter of survival, and I came out the other side a stronger, softer, and (I would like to think) kinder person.
  4. (I’m an overachiever). Time can be your best friend or your worst enemy. Learning and practicing mindfulness has been a huge help to me.  Learning to be okay in the moment, even if it is an uncomfortable moment, is crucial. Time, of course, also heals all, and problems seem to shrink rather than grow when seen through the lens of a few days.

Continue reading 3 Lessons and 3 Challenges After 3 Years of Chronic Illness

Baby’s First Migraine Attacks, Diagnosis, & Migraine Genetics

A flash of nostalgia came over me as I picked up the yellow towel on the couch and hung it up. I remembered my nephew flinging it aside last night the moment he got out of the bath, his long hair dripping on his small, cold shoulders. I saw the same image two nights ago when we planted in his garden after his bath. He seems impervious to the cold and intent on getting dirty, too excited to put on a shirt before grabbing his small yellow hoe. We had meant to plant during the afternoon of course, but my sister, his mom, is a self proclaimed hater of the wind and the palm trees in Southern California have been extra vocal this week.

The author and her sister as wee children

My head throbs now when I hold the yellow towel just as it did when I watched his dear shoulders guide the yellow hoe through a path in his garden. I don’t notice too much. It isn’t too bright or loud, and every day I am learning to be calmer and gentler with myself.

I am trying to be patient with my body, giving it the time and space it needs to heal, and making an effort to enjoy every moment spent with my family.

My shoulders were even smaller than my six-year-old-nephew’s are now when I experienced my first migraine attack. I was three years old and just recovering from a nasty bout with the chicken pox when I experienced excruciating nausea and head pain. To this day I remember not wanting to watch Beauty and the Beast because the television hurt my eyes and how that fact scared me. At that period in my life, like so many budding bookworms in the early 90s, it was a serious emergency if I was too sick to watch Belle tell off Gaston.

I Now Pronounce You Diagnosed

Once I vomited (my greatest fear at that young time) the pain subsided a bit and I was able to sleep, but the attacks were not over. I experienced two more in the following weeks which meant a trip to Dr. Dias, my favorite pediatrician, a gentle Indian man with soft hands and incredibly blue eyes.

The author with her sister at age three and a half - the age migraines began
The author with her sister at age three and a half – the age migraines began

I have heard my mother tell the story of my toddler migraine attacks to a several neurologists and doctors over the years, and she always includes the exchange:

Mom: Please don’t tell me she has migraines.

Dr. Dias: I’ll tell you these aren’t migraines, but they are migraines.

I now pronounce you diagnosed.

I don’t remember much about being three but most of it revolved around the back yard and my little sister and playing in the sprinklers. It’s easy as an adult to conjure up feelings of goodwill, love, and empathy alongside an image your toddler self. When you picture your young self ill or frightened  the desire to comfort is strong and natural. But as we get older, thanks to society or nature or both, that desire fades and sacrificing our health for success, money, convenience, the happiness of others, fill-in-the-blank, is the norm. Whether you’re stuck inside with a chronic illness 23 hours a day or just doing what you need to do to make your day a little easier, each of us could benefit from looking in on that young self every once in a while.

[bctt tweet=”Thinking back to simpler sick days is a helpful reminder to take care of myself with love and empathy.” username=”CMLifeblog”]

Continue reading Baby’s First Migraine Attacks, Diagnosis, & Migraine Genetics

Head Uphill and Leave Your Pain Behind

Long must you suffer, not knowing what,
Until suddenly, from a piece of fruit hatefully bitten,
The taste of the suffering enters you.
And then you already almost love what you savor. No one
Will talk it out of you again.
-Rainer Maria Rilke

Even after a brief stay at elevation the air on the coast feels impossibly thick. The city streets seem too wide, the sky not blue enough, the horizon too far away. It doesn’t take long for the mountains to get under your skin. After only a few hours at elevation your blood thickens and your body produces more red blood cells. You become more efficient at using oxygen so that even this thin air feels more nourishing than her coastal cousin.

I was away less than two weeks this time, but it was long enough for me to reconnect to places and people that I love and miss and also meet and discover new ones. It was long enough for me to feel the freshly melted snow carry my hair downstream. It was long enough to sweat, climb, and bleed in the early summer sun. It was long enough to reawaken muscles and corners of my body and soul that have too long been ignored. It was long enough for me to remember what it feels like to be healthy again.

The Tuolumne River
The Tuolumne River

During the 12 days I spent in the Eastern Sierra I had four migraines. Each of those migraines lasted less than twenty four hours, not including the postdrome stage (also known as the migraine hangover.) To some this may seem like a lot, but compared to the baseline of daily, constant migraine that was my reality for way too many months, it is remarkable. Even just a day – an afternoon – of respite from pain is celebrated. You cannot truly appreciate the feeling of the sun on your skin until you have experienced true darkness.

Continue reading Head Uphill and Leave Your Pain Behind

Rule Your Headache Disorder

Happy Migraine and Headache Awareness Month 2016!
This is my first year participating in this campaign and I am thrilled that the theme chosen for this year’s awareness month focuses on living well with migraines rather than solely awareness aimed at the general public. This year’s theme is Rule Your Headache Disorder with a special message to be actively engaged in your treatment and lifestyle choices. Like many migrainuers, I know from experience that ignoring my headache disorder, letting my doctor call the shots, or slacking off with lifestyle modifications can very quickly lead to a situation where I feel out of control. Alternatively, learning about migraines, keeping communication open with my doctor, and continuing my commitment to lifestyle modifications puts me in a position to best rule my headache disorder.

Combat Pain with Creativity

One of my coloring creations
One of my coloring creations

Active engagement in our treatment plan extends far beyond the doctor’s office, just as the tentacles of migraines disease reach far beyond our own bodies. Each and every migrainuer is different and experiences migraines differently, but diet, sleep, exercise, and, my favorite, stress management are all important pieces of the management puzzle. Keeping stress at a minimum is crucial both between and during migraine attacks, but it is difficult to say the least, especially when you are dealing with severe pain and nausea.

One of the best and most fun ways to combat pain and relieve stress is through the creative process.  Coloring, cooking, walking, reading, writing, painting, photographing, birding, listening to music… Any tasks that involves focus and imagination quiets down the part of the brain that controls stress, the amygdala, and causes a stress-relieving response throughout the entire body.

“Fostering imagination as an adult is one of the most meaningful things to do for your mental health,especially if you are dealing with the high levels of stress that comes with chronic pain. Illnesses changes lives, abilities, and perspectives, and creative activities help tap into a deeper part of ourselves. It is precisely the creative and playful part of ourselves that we need to connect most to in order to process the experience of pain and best cope with it.”

To read more about combating pain with creativity, please check out my recent article for the Peace Naturals Project.

A special thank you goes out to Teri Robert for her work with Healthcentral for Migraine and Headache Awareness Month. Be sure to wear purple all month to show your support and keep your eyes open for headache and migraine hashtags on social media.

 

Finding Light in the Dark of Chronic Illness

It has been only four months since my last post, but in some ways it feels I’ve lived half a lifetime since then. Winter, or what passes for winter in mild southern California, has fully given way to spring. The finches at our backyard feeder are in full breeding pluming with vibrant red breasts and their mating songs are a welcome addition to the mostly mechanical sounds of the neighborhood. Mourning cloak and monarch butterflies are so abundant that one could (and sometimes I do) spend an entire afternoon watching them dance in the gentle breeze, occasionally landing on a milkweed leaf or a palm frond or even finding a partner or two to pirouette with.

As for me, I have been working very hard to steer my own winter towards spring. Unfortunately, my migraines have progressed from chronic migraine (15 or more migraine attacks a month) to chronic daily migraine. In essence, I no longer go through the four phases of a migraine attack, and  I have symptoms of a migraine at all times, including but not limited to: light and sound sensitivity, head pain, fatigue, body aches, nausea, chills, neck pain, irritability, alloydnia (skin painful to the touch), vertigo, and tinnitus. Some days or parts of days are better than others, but I haven’t had  completely migraine free days yet. I include my individual symptoms not in an attempt to garner sympathy, but as a gentle reminder to any of my readers lucky enough not to experience migraines themselves that they are so much more than just a headache!

Anticonvonsulants for Migraine Prevention and Their Pesky Side Effects

Because of my worsening migraines, I decided to drop out of the clinical trial that I was enrolled in so that I could fully focus on getting my migraines under control and take the preventative medications that conflicted with the trial. Unfortunately, the headache specialist at UCLA Neurology Clinic whom I trusted and had been working with for the past 18 months took another job and left the hospital right around the same time that my health got worse. She prescribed me a large dose of Depakote, an anticonvulsant that is used to treat both migraines and central nervous system sensitivity and is one of the few I had not previously tried, before she left. She warned me about hair loss and weight gain, but luckily I did not experience either.

I did, however, experience some pretty severe brain fog and tremors when I was later prescribed a second anticonvulsant, Topiramate (or Topamax), by my new headache doctor. Almost every chronic migraine sufferer is familiar with Topamax, as it is one of the most effective and commonly prescribed migraine preventative medications. The brain fog associated with it, however, can be so horrible that it is un-lovingly referred to in the migraine community as Dopomax. The side effects of the two anti-seizure meds on top of the daily migraines added up to an utterly miserable mess of me.

In the garden. Photo by me
In the garden

Propofol and Occipital Nerve Blocks for Refractory Migraine

By the time I met with my new neurologist I had been in bed for three months, had lost ten pounds, and was ready to try more aggressive treatment. She rcommended we try an outpatient procedure during which I would be anesthetized with propofol. While knocked out I would also receive  nerve blocks to treat the damaged occipital nerves that begin at the base of the skull, wrap around the head and end at the eyes and may be causing some of my pain.

Studies have shown that propofol infusions can help some patients with migraines that do not respond to treatment, but I, sadly, was not one of those patients. The staff at the surgery center was so wonderfully kind to me, and my insomnia leading up to the procedure was so terrible that I think it was worth it just for the experience of a deep drug-induced sleep. Although, I could have done without the bill.

“Your struggle is your strength. If you can resist becoming negative, bitter or hopeless, in time, your struggles will give you everything.”

-Bryant McGill

DHE Injections

Our next try was an injection of DHE, a drug commonly used to abort migraines. Administered via injection or IV in a doctor’s office it has a high success rate at stopping ongoing migraines, particularly in people with episodic migraines. It was not my silver bullet, to neither mine nor my doctor’s surprise. At that point my migraine had been daily for five months, and I no longer expected to wake up in the morning without a migraine.

The real MVP in the DHE trial was my beautiful little sister who took me to the appointment and managed to comfort me with one hand while I car vomited and change lanes with the other on the 405 freeway at 70 miles per hour. Without her strength and empathy the miserable experience would have been much more miserable.

Cognitive Behavioral Therapy & Looking Forward

I am primarily housebound, as there are not too many places one can go when one’s symptoms are exacerbated by light, sound, and movement. I am working with a Cognitive Behavioral Therapist who deals exclusively with the elderly or the ill and we are constantly looking for new ways to adapt my skin and mind to my surroundings, so I can experience as much life as possible even with a migraine. Steadily and slowly I’m learning mindfulness, gratitude, gentleness, and pacing. It is a physically and emotionally trying journey and I sometimes leave her office overwhelmed with even more tips and suggestions of things I “should” be doing. Even so, I am working very hard and I have already seen quite a bit of progress on this road I am traveling that will hopefully lead me  to remission or acceptance. But that is for another post.

Monarch pupae awaiting change
Monarch pupae awaiting change

I am slowly titrating off of the anticonvulsants that did not bring me relief under the guidance of my doctor and am so grateful to bid adieu to the tremors and the worse of the brain fog. I have implemented dozens of small lifestyle and supplement changes, which I plan to write more about in my upcoming posts if my head allows.  Until then, I am focused on listening to my body, practicing healthy habits, educating myself as much as possible about my disease, and trying to suck as much joy as possible out of this beautiful and only life I have been given.

A Fresh Start

Just before sunset I put on my neglected running shoes and went for a walk. As the sun set over the wetlands, my mom and I watched the dabbling ducks dive for the last meal of the day. We watched the ibises and the egrets fly home in groups of threes and fours. We watched the colors change in the sky and on the water, and we just walked.

After more than two months in bed with pain so big  standing up made it worse, walking in the cold fresh air felt like a baptism. It is hard to feel full of life when you are stuck in bed, day in and day out. It is hard to feel full of life when every movement, sound, and light hurts. It is hard to feel full of life when your whole world feels as big as as your bed on a good day and as big as your body on a bad day. Just being outside, feeling my muscles and joints reawaken, I felt like I had been given a completely different body.

Recording the end of my migraine, maxed out at 999.99 hours

Even better, I felt like I had been given hope. The chronic illness journey involves constantly toeing the line between hope and fear. Naturally, any time my health gets worse or I experience a prolonged migraine attack my thoughts turn more easily to fear. Fear of getting worse or never getting better, fear of side effects and complications, fear of judgement and abandonment. These are the days when hope is at its most powerful but is the most difficult to draw upon.

As I move further along on my chronic pain journey I am getting better at  finding joy and hope during periods of illness. I expect this to be a continuous challenge filled with ups and downs befitting the cyclical nature of grief and gratitude. When the pain subsides, though, the joy is overwhelming.  All of a sudden the hope and gratitude that I have struggled to hold onto come easily. Watching the sun set and the birds dance I am reminded that my place in the world is so much more important than my illness. I am reminded that I am so much more important than my illness.

Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting
over and over announcing your place
in the family of things.                                                                                                                                     – Mary Oliver

When the Pain Won’t Stop

You know how in certain nightmares  you find yourself suddenly unable to move or react to a terrible situation? Something is chasing you or you are falling, and you are powerless to move your arms or legs. You fight and fight to move long after you know it is useless. The realization that you are powerless is terrifying, and you remember that terror long after the details of the dream fade from memory.

Severe pain is a lot like that nightmare. Disability is a lot like that nightmare. I hate the word disability, maybe because I have yet to make my peace with it. Disability is the only word, however, that does justice to the long weeks I’ve spent in bed with an intractable migraine (10 and counting). This period of severe pain and disability is a whole different beast than any physical or emotional situation I have encountered. This beast gets its power in its relentlessness. Every minute of every day I am in pain, almost always pain that is severe. It gnaws on me every minute of every day and tests every coping skill I’ve learned from years as a migraine sufferer.

“Illness is the doctor to whom we pay most heed; to kindness, to knowledge, we make promise only; pain we obey.”

– Marcel Proust

Everyday I wake up sick and in pain, and everyday I fight it. Like the mysterious enemy in those nightmares it traps me in my body and pins me to my bed. The realization that I am physically powerless hits me everyday with the same visceral terror felt in those nightmares. I fight it every day, though. I fight like hell to feel better every day, even if it often only highlights my powerlessness. Like in the nightmare, I can’t help but to fight and fight and fight. On the outside the fight doesn’t look like much: a smile, a shower, a few minutes spent out of bed with the people I love. Most of the time the fight is completely invisible to those around me just like the pain.

fightpain

Pain changes your brain. It changes your mood,  your perspective,  and your thought process. It demands to be felt and it demands to be catered to. Migraines bring a host of cognitive effects that change your brain even further. They slow down your thoughts and make it difficult to pay attention to conversations or tasks. They cause brain fog that makes you forget your PIN number and the second half of sentences. I have been waiting for my pain to subside long enough to write, and now that it has it seems dishonest and maybe even impossible to write about anything other than this pain.

I started this blog around the same time I enrolled in a clinical trial for chronic migraines. I had high hopes that the trial would at least get my migraines under control and this blog would be about life with migraines,  rather than migraines with a little bit of life on the side. Life and my brain had  very different plans for me, apparently. Despite it all I don’t doubt that I am strong enough to make it through this period of crisis, especially with all of the love I receive from my family, my partner, and my friends. This migraine may be intractable but so am I.

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”

-Maya Angelou

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