A flashing Migraine aura shortly after waking has confined me, once again, to my bed and to my head. After meditation + medication + nap, I turn to the Internet where Google’s gorgeous birthday tribute to Virginia Woolf inspires my own brief tribute to a muse for Migraine writing.
Literature has always held the answers for me. Until I met Chronic Migraine, I hadn’t dealt with a problem or pain that a few hours of journaling wouldn’t heal. When I turn to literature for solace and guidance in my life – and eventually, my own Migraine writing – I’m greeted with few real options. Virginia Woolf noticed, too.
“Finally, to hinder the description of illness in literature, there is the poverty of the language. English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. It has all grown one way. The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry. There is nothing ready-made for him. He is forced to coin words himself, and, taking his pain in one hand, and a lump of pure sound in the other (as perhaps the people of Babel did in the beginning), so to crush them together that a brand new word, in the end, drops out. Probably it will be something laughable.”
– Virginia Woolf, On Being Ill
Love, suffering, pain, even death are explored deeply in literature again and again, but most writers have been afraid to look sickness in the face. It’s no surprise that an empathetic and raw look at sickness generally and headache especially came about when women finally picked up the pen.
Virginia Woolf, tragic Ophelian muse that she is, was one of the first.
Happy Birthday, Virginia. From one sick soul to another, creating from bed.
“Illness is a part of every human being’s experience. It enhances our perceptions and reduces self-consciousness. It is the great confessional; things are said, truths are blurted out which health conceals.”
It has been a rough year for all of us. From the explosion of xenophobia and the election of a sexual predator to the White House, to the near constant headlines of police brutality and senseless gun violence, 2017 required us to take an exhausting look at the sickness of our society. Those of us navigating a sick society with sick bodies have had an even rougher year, with constant threats to Medicare, Medicaid, and the Affordable Care Act adding more stress to our already maxed-out bodies.
While the shitstorm of 2017 grew inside and out, I turned to mankind’s greatest comfort: books.
Books are the ultimate window into humanity. They draw out love, grief, fear, despair, hope – those universal truths of humanness that all of us feel so intensely and yet too often make us feel alone. Books are the ultimate tools for empathy. A good book shines a light on truths inside of yourself and helps you see the truths in those around you.
As Maya Angelou wrote:
“Information helps you to see that you’re not alone. That there’s somebody in Mississippi and somebody in Tokyo who all have wept, who’ve all longed and lost, who’ve all been happy. So the library helps you to see, not only that you are not alone, but that you’re not really any different from everyone else.”
The Art of Mindful Living: How to Bring Love, Compassion, and Inner Peace Into Your Daily Life by Thich Nhat Hahn
This audiobook is only two hours long, but it contains more wisdom and guidance than an epic tome. Read and written by Zen Buddhist master Thich Nhat Hahn, this book has changed my life. I have listened to it many times and use the principles within it every single day in my mindfulness practice. I will gladly spend the rest of my life practicing the teachings of this book.
This book is perfect for: humans; those seeking peace or healing; anyone interested in mindfulness, spirituality, or meditation
When Women Were Birds: 54 Variations on Voice by Terry Tempest Williams
“We come into this world through women, a woman who is spent, broken open, in awe. No wonder women have been feared and worshipped ever since man first saw the crowning of a human head here, legs spread, a brushtroke of light.
We are Fire. We are Water. We are Earth. We are Air.
We are all things elemental.”
This book is perfectfor:writers, poets, hikers, environmentalists, strong women
The Grim Sleeper: The Lost Women of South Central by Christine Pelisek
True crime is my ultimate weakness. Nothing distracts me from my own pain and trouble like a gory, true, and horrifying tale of crime. While I get my fix mostly from podcasts (SSDGM!), The Grim Sleeper was absolutely worth the commitment. With respect and journalistic integrity, Christine Pelisek tells the true story of a serial killer in Los Angeles who murdered women of color over the course of decades. The book takes a hard look at our justice system, race relations, and violence against women. It’s a horrifying story that absolutely needs to be told.
This book is perfect for: true crime aficionados, making the hours fly by, sleeping with the lights on
The Hate U Give by Angie Thomas
Honestly, I hate it when books make you cry but sometimes it’s necessary. Angie Thomas’ young adult novel about a young black girl who witnesses the murder of her friend by a police officer had me in tears at least three times. The story is heavy, relevant, important, and wonderfully told through the eyes of a 15-year-old narrator. I usually don’t go for YA books, but this one is so much more adult than I expected. And it manages to cover serious themes without being preachy. A+
“Sometimes you can do everything right and things will still go wrong. The key is to never stop doing right.”
This book is perfect for: white people; fostering empathy
Manhattan Beach by Jennifer Egan
As far as I’m concerned, Jennifer Egan is a goddess. Her genre-bending Pulitzer Prize-winning novel A Visit From the Goon Squad blew me away in its scope and creativity, so when I saw she came out with a new novel in 2017, I immediately got my hands on a(n audio) copy. Manhattan Beach is on the longer side, and I almost lost interest part way through, but I am so, so glad I stuck with it. This historical fiction novel takes place during WWII in New York City and follows the life of Anna as she navigates what it means to be a working woman during wartime in a society that prefers women to be invisible. It is an adventurous and unpredictable novel filled with memorable characters, a vivid setting, and an exciting plot. In short, everything I look for in a good book.
This book is perfect for: history lovers; fans of the Sopranos; modern-day Rosie the Riveters
Peace out, 2017! I can’t wait to see what 2018 will bring: the adventures, the tragedies, and the books to soothe both.
Next Saturday, October 7th, two awareness organizations are teaming up for a huge and important event that is especially close to me. Miles for Migraine and Runnin’ for Research (yus, alliteration) are hosting a national Migraine and Headache Awareness Race Day. My partner Eric and I are participating and raising funds – and you can help!
Why I really, really care about this event:
Migraine is egregiously underfunded relative to the damage it does. This disease touches one in four families in the U.S. and directly affects the bodies of 12% of the population – including children. (Personally, I was 3 years old when I was diagnosed). Apart from inflicting severe pain and a wide range of neurological symptoms, Migraine steals from us the most valuable prize – time.
Despite the widespread and devastating impact, Migraine receives a despicably small amount of attention in the research and medical world. There is still no cure. Researchers are unsure of the cause. And in 2015, the National Institute of Health spent just 50 cents on Migraine research per person with the disease. I have no effective treatment, so in 2015 I lost 365 days to Migraine, while the NIH spent just 50 cents on me.
Awareness is the First Step Towards Research
Increasing Migraine awareness is the first step to increasing funding from NIH and other researchers. Too many people think of Migraine disease as a “headache” and that stigma has real effects on the amount of respect – and, ultimately, funding – that Migraine receives.
My supportive and wonderful partner Eric Smith and I are running (maybe walking) a goal distance of 5 miles each on October 7th and raising funds for research while we do so. We appreciate every dollar donated to this cause that means so much to us and has impacted so many millions. (*Note: Eric will be picking up my slack, so if I’m too ill for even a mile he will do 10. He’s mostly on board.)
100% of proceeds will go towards Migraine research. Thank you for donating, sharing, and doing what you can to help out.
Every penny, every kind word means a lot
When I first got sick, I was afraid to talk to people about my attacks because it seemed so weird and really hard to understand. But since I began writing on this blog, sharing, and over-sharing my experiences, I have received nothing but kindness and support from the people in my life and from strangers.
I appreciate every kind word and every one of you who takes the time out of your day to read and try to understand the struggles of one young woman – struggles that resonant and ripple far beyond us.
As of July 3, 2017, I have been reluctantly learning how to live with chronic migraines for four years. This anniversary passed with a pit in my stomach, extra weight on my shoulders and limbs, and nothing more.
Time is not as heavy when you’re sick. How could I possibly count the lives I’ve lived in the past four years? How can I explain the agonies, the nightmares, the feverish desire of the past four years? How can I possibly explain the calm with which I now greet each day – even as a storm rages in my brain and central nervous system?
How to Live with Chronic Migraines: Lessons in Life and Suffering
Robert Frost wrote, “In three words I can sum up everything I’ve learned about life: It goes on.” This was one of my favorite quotes as an angsty teenager and still is today as a 28-year-old woman with a chronic illness.
I am not as elegant as Robert Frost, and I’m prone to (light) plagiarism. But I, too, can sum up everything I’ve learned about life, particularly about life with chronic migraines:
Life is suffering.
On the surface, this lesson that I stole from Buddha feels inherently negative and necessarily harsh. But unravel its threads and you can see the truth, the beauty, and the freedom that this idea holds.
For women, this idea is familiar or even obvious. We who bleed monthly with a whole body shudder know suffering. We who hold the seed of life every day, feel the weight of its responsibility, know this.
We who are sick know this. But as independent, modern women and men, we fight suffering. From the first breath we seek comfort, relief, fulfillment, and the more we suffer the harder we seek.
To be still , to accept the suffering of life , is to be free. To end the seeking , to acknowledge your suffering, is to be free. To feel the suffering of others flow through you, made of the same cloth as your own, is to be human.
The idea that life is suffering – and that it still goes on – hit me suddenly four years ago with the shock of jumping into a near-frozen lake. It took me four years of fighting, four years of weakness, four years of seeking and desiring, to learn how much power I hold in my suffering.
Life is suffering. Suffering is life. In the final waves of your mother’s womb before you took your first breath. In the scream of a blackbird as a raven devours her young. In the bumper to bumper traffic you sat in this morning. In the words you say to those you love that you can’t forget.
From pain, comes beauty. From pain, comes life.
I’ve Learned Enough for a Degree
It took me four engaging and exhausting years at UC Santa Barbara to earn a double major: Bachelor of Arts in Environmental Studies and Political Science. The past four years learning how to live with chronic migraines have been equally draining and enlightening.
For the occasion of surviving – no, thriving – through four years of chronic pain, I have invented and am presenting myself with a degree:
Bachelor’s of Life in Suffering and Chronic Pain (with a minor in empathy)
Although I’ve learned many lessons in how to live with chronic migraines, I have not necessarily accepted that chronic migraines will always be a part of my life. But if life drags me through Suffering and Chronic Pain grad school, at least I know I’ll be able to handle it.
Tools to Help you Live Better With Chronic Migraine
Each of these resources has helped me personally. If you’re struggling to make sense of a life with unpredictable pain, I highly encourage you to poke around and try out some of these tools:
Dr. Dawn C Buse –learn diaphragmatic breathing and relaxation from a Migraine psychologist
Migraine Strong – positive support group on facebook for Migraine diets and Migraine living
Migraine World Summit – knowledge is power. Arm yourself with tools and science from the top minds in Migraine medicine
Find a Cognitive Behavioral Therapist – I think every person with chronic pain can benefit from CBT. (I personally relied on CBT during the darkest of times, and I’m very grateful for it). If you have issues with sleep, anxiety, or depression on top of chronic migraines, I encourage you even more strongly to see how much a good therapist can help.
Ever since I was a child, I have divulged my deepest, darkest selves through poetry. Most of the time, it was terrible poetry, but the effect was the same. Writing poetry is therapy, a form of catharsis, a way to break down the world around me and inside me into digestible, if not unsavory, pieces.
With these original poems of invisible illness, I aim to pull back the sheets and explore the agony, ecstasy, and tedium of living with Chronic Migraine. They’re raw and real and I make no promises that they aren’t terrible:
Drinking deeply half a dozen
Of everything that tastes good,
Everything that brings a twinge of pleasure
(how much more is needed to drown pain?)
My physical body is equally lustful
Every ray of light
Every ripple of sound
Taken into pain
Can you blame me
for my feasts?
Do you understand
My invisible burden,
My Grinding yet innocent wants,
(what could be more innocent
Than the simple desire for relief?)
life without the constant glow of pain?
I feel betrayed,
But by whom?
I collect steps, the cries of gulls,
The wing beats of swans
The taste of salt.
I slide through mud,
Past cowpies and sagebrush
Newly uncovered by the spring melt
I am here
I say to the Earth and no one
I am strong. I have worth. Like you.
I am here
my soft places ache
Biological – yes – but neuro too
The sting of the neurotic still potent
Pass the smelling salts
There is mud on my shoes again
a trophy to me
a symbol of another day lived
Most days my shoes are dry
The weight of disease makes my shoulders ache
Like a remnant twin,
a gall engorged in bark,
a wooden t grown heavier
Migraine plucks my nerves raw and
sinks thumbs into eyeballs
It rams sharp elbows in my gut and
Grates my skin
those soft places they tell you to aim for
In the event of an attack –
A stranger attack,
An attack by a man.
there is no fighting back during a Migraine attack
No skin to claw at or balls to crush
Nothing to do really
But draw the shades,
Close your eyes
and take it
My feet pound the soft water logged Earth
And she pushes me up gently
Here, here, here
My feet, my heart,
My temples thud
Here, here, here
Is the reply
Another day lived
Another day still intact,
If not badly frayed
And caked in mud.
Want to share your poems of invisible illness, Migraine, mental illness, or chronic pain?
Email me: email@example.com (or use the contact form on this blog)
Good days with Chronic Migraine, though not pain-free, are vital for nurturing strength
There is no greater high than a sick body feeling well.
I am incredibly happy to say that I know this intimately. After several weeks of bad days and slightly less bad days, I am feeling well, vital, energetic – almost the way a person without chronic illness might feel. The unignorable head pain has shrunk to an irritating hum. The persistent nausea has died down, enough at least to let hunger flood back.
I have seized each day that I have woken up feeling well. Despite hearing many cautions to “not overdo it,” which is actually good advice, I throw caution to the wind. Every day that I’m physically able to, I tie on my running shoes and pick a different mountain trail to call mine.
When my feet are pounding the dust or swerving around rocks or picking my way through dense sagebrush, I am no longer a sick person. When the sun is on my face, I don’t think about Migraine. I don’t think about prevention, triggers, whether or not I’m doing enough (for the record, I am.) I don’t worry about affording my meds or side effects or proposed budget cuts to federal disease research – my only hope for a cure.
Good Days with Chronic Migraine Nurture a Sense of Vitality
When I am running, I simply am. Breath, sweat, dust. I am a part of this world as much as the root of the Jeffrey l leap over or the hermit thrush I share the shade with. When you spend days, weeks, or months inside, sick with Migraine, the outside world seems like a dream. Like a dream, life outside your four walls is maddening in its closeness and unattainability.
The good days, though, these precious glimpses of health, this is what I life for. This is what every person with a chronic illness lives for – the good days past and the hope for more to come. This is why we restrict our diets, suck down supplements and pills, and spend thousands of dollars a year just on the possibility of progress.
Making it through the bad days with spirit intact is never easy. For me, it has gotten easier – just a little. The miracle that makes it all okay is feeling all the pain, emotional trauma, and unreleased energy of the bad days melt away. As quickly as the sickness ascends it is forgotten – at least mostly. Chronic pain keeps its tendrils wrapped around me every day. The good days with Chronic Migraine are never free of pain – there are no days without Migraine when you’re chronic.
These Are the Days I Live For
But those hours, as fleeting as they are, when I can forget Migraine and feel the strength and vitality of my body – these are the days I live for.
Today is the fourth consecutive day that I have not had a migraine attack by noon. I haven’t had a wellness streak this long in months – I can’t even tell you how many. I have been working my ass off to get here and I’m going to keep working my ass off to stay here. I know that no matter what I do, though, the next attack will hit. I will hunker down, I will grieve, I will endure. I will wait as patiently as I can for my next hours of freedom.
These fleeting good days with Chronic Migraine are an important reminder of my strength – a strength that can be hard to find on bad days. I know it’s in there, though, and I will do my best not to forget.
I will do my best to cultivate my strength like a rare and finicky orchid – so much work , but the end result is so beautiful that it hardly seems real.
My car tire sprung a slow leak. I filled it with air at the local gas station, ignored the tire pressure warning light, and continued on my daily juggling act.
Between a part-time job, Maid-of-Honor planning duties, daily headaches, near-daily migraines, the chores of taking care of a snow-covered home and a blind kitty, and small contributions to patient advocacy, my life has become a juggling act. I begin each day with less energy than required to get everything done, and yet I manage. I postpone, cancel, and schedule in sick time, but I manage.
Chronic Migraine has introduced a slow leak into my life. I have no time for a slow leak in my tire.
Like most of life’s problems, ignoring my leaking tire only made it worse. By the time I realized my tire wasn’t holding air, I had driven hundreds of miles and effectively wrecked my tire.
I finally crawled out of bed and my Migraine haze and took my car to the shop, but by this time my gas tank was emptier than my tire. My car had been slowly breaking down, lighting up warnings on the dash and dinging at me to get my attention. The longer I ignored it the worse it got.
If that isn’t a perfect metaphor for chronic illness, I don’t know what is.
Literally and figuratively, I’ve been running on empty with chronic pain.
It’s Okay to Ask For Help
Every time I have been struggling in my life, I have been able to turn to my parents. I am incredibly lucky. Whether the problem is my increasing disability or a leaky tire, my parents often recognize the issue and interfere before I even ask for help. (Really, what more could you ask from parents? I am so grateful and so filled with love for them.)
Eventually, my dad filled up my tire and made me an appointment at the tire shop. My mom took car of business at the shop so I wouldn’t have to withstand the smell of the rubber tires. (For those less acquainted with chronic illness or Chronic Migraine, strong smells can be difficult to handle at best or trigger migraines at worst.) She even filled up my gas tank for me and picked my car up at the end of the day.
Over dinner she told me, “Did you know you were running on empty? I filled up your tank for you.”
Oh, Mom, if only could you help with the other empty tanks in my life!
Lessons Learned by Running on Empty with Chronic Pain
The way I see it, this story has at least three different morals.
Moral #1: I am not the most responsible adult. This point is pretty obvious, and you very well may be shaking your Baby-boomer head at me. I’m not proud of my terrible ability to take care of my car, but I’m trying. And I’ve learned to stop ignoring the lights on my dashboard.
Moral #2: It’s okay to drop the ball. When you’re juggling a full life on top of chronic illness, sometimes you have to chose which ball you let hit the floor. In this case, I dropped the ball on my car. Next week, it will likely be something, but I will try my hardest to keep juggling.
Moral #3: Our support systems are so valuable when we need help. Asking for help is so hard, and not everyone has parents who understand their illnesses. Everyone with a chronic illness needs help from time to time, whether it’s in-person help with daily logistics or emotional support from friends online. Never be afraid or ashamed to admit you dropped the ball and need help. We are stronger together.
Tell me – Are you running on empty with chronic pain? Do you ask for help when you need it?
I know how difficult it is to make progress against migraines. You can change your diet, change your sleep, change your habits – you can change your whole life and still find yourself battling the Migraine beast.
Fighting migraines can also feel like the loneliest battle. The people around you cannot understand, try as they might, the physical and emotional struggle. That is why it is so important for each of us to be our own advocates and do everything we can to make our lives with Migraine as easy and joyful as possible.
If you’re ready to start having more good days, feeling less alone, and suffering through fewer migraines, you absolutely must take advantage of this rare and free opportunity: The Migraine World Summit.
I attended the first online summit last summer, and I gained so many valuable tools and resources from it. The Migraine World Summit is back this April 23 – 29, 2017, with 36 new interviews with top experts and doctors. The best minds in Migraine research and the Migraine community will come together to provide answers, info on new treatments, research and best practices for migraines and chronic headaches.
The best part – it’s available to anyone with an internet connection and it’s free.
Migraine World Summit Speakers I Can’t Wait to See
The line-up for this year’s Summit is incredibly impressive. Some of the biggest and most respected names in Migraine research and medicine are included. The topics are diverse and all relevant to life with Migraine or chronic headaches, and I can’t wait to hear about all of them.
With much debate, I narrowed down the top three speakers that I’m most excited for:
– Dr. Joanna Kempner “Shifting Cultural Perceptions About Migraine”
Dr. Kempner’s book Not Tonight: Migraine and the Politics of Gender and Health has been on my to-read list for months. Just today a shiny copy arrived in the mail, and I immediately dug in.
Dr. Kempner is a sociologist, a woman with Migraine, and an expert on women and Migraine. Not Tonight untangles the complicated web of gender, migraines, and pain that affects so many of us. I absolutely cannot wait to hear what Dr. Kempner has to say about the way Migraine is viewed in our culture and what we can do to make it better.
– Dr. Brian Grosberg “Neuromodulation: New Devices that Can Ease Pain”
Neuromodulation devices are among the newest, most exciting migraine prevention tools available. How neuromodulation works is really sci-fi: a device is applied to the skin and uses magnets or electric pulses to stimulate the nerves involved in a migraine attack.
I currently use one neuromodulation device – Cefaly. I constantly positive and exciting stores about hear about Cefaly and other devices like Spring TMS, GammaCore, and the Nerivio Migra armband through the migraine grapevine.
Dr. Grosberg is the director of the Hartford HealthCare Headache Center. I cannot wait to hear which neuromodulation devices he is most excited about.
– Dr. Amal Starling “SEEDS Natural Method for Migraine Control”
I admit, I have no clue what the SEEDS method is, but I can’t wait to find out. I am ALWAYS look for natural tools for migraine prevention or pain control. While I’m also excited to hear about new developments in Migraine treatment and research, I have tried and failedso many medications and treatments. A new one has to look pretty good before I jump on board.
Natural ways to manage migraines, however, usually don’t come with big bills or side effects. It’s much easier to commit, and the results can be pretty powerful, in my experience.
Dr. Starling is an Assistant Professor of Neurology at the Mayo Clinic. As a young headache doctor at a very prestigious clinic, I have heard Dr. Starling’s name mentioned and praised many times. I can’t wait to hear her method for natural migraine control.
The Migraine World Summit is Too Valuable to Miss Out On
Battling Migraine is so exhausting, and after a certain point Google switches from your friend to enemy. The Migraine Word Summit is a free, online, low-commitment way to learn from the best. With advice and wisdom from some of the top headache doctors and experts, you can begin to make real progress in cracking your migraine code.
Chronic Migraine makes me feel like Dr. Jekyll and Mr. Hyde. I am two people living in the same tired body. The pull into the pain and madness of Hyde has been strong this winter, as my body and mind weathered migraine attack after migraine attack – some lasting as long as 6 days.
This winter has been a winter of snow, a winter of change, a winter of adventure. Like the 15 seasons that came before it, this winter has been a winter of migraines.
Resisting the Urge to Hibernate
I am lucky. I live in a littlecabin sandwiched between snowy domes and formidable peaks. The Sierra Nevada is my happy place – the place where I feel most connected to my healthy, vibrant self and the rich world I get to live in.
If anything is strong enough to dull the glow of my happy place, though, it’s Chronic Migraine.
I found joy in crafts, baking, my home, and my friends this winter. Even as I battled migraine attacks and snowstorms, I found joy in my body and in my environment.
While I devoted my time and energy to work, hobbies, and health, my Migraine self – my Hyde – constantly lurked in the shadows. Like most people with chronic pain, I spend huge swaths of energy steering myself away my Migraine self, my Hyde. If I don’t invest in me, if I don’t choose joy, I run the risk of becoming Hyde full-time.
Forcing myself to go for a run with a headache, popping on an ice pack and writing away on my laptop, bundling up and grabbing my skis when my body wants to be in bed for the fifth consecutive day – from the outside my battle looks like the normal life of a young person. In reality, each hour during this winter of migraines that I managed to resist hibernation is a huge victory.
Shoveling, Skiing, and Sleeping My Way Through a Winter of Migraines
These victories are even more impressive when you consider the kind of winter we’ve had. If there was ever a winter made for hibernation, it is this one.
The ski mountain that looms dramatically over my home currently reports 330″ inches of snow at the summit. That’s twenty seven and a half feet!!
In an attempt to save some cash, my housemates and I decided not to pay for snow removal for our four-car driveway. This means we shoveled (by hand!) our way out of each atmospheric river snow dump. The snow was so thick that on several occasions we left our cars at home and skied the unplowed streets.
Chronic Pain Be Damned
Living well when you’re sick every day is damn hard. I know from experience, though, that
it is well worth the effort. I have bad days and worse days and I’m tired all the time. But I am creating a life I love with people I love in a place I love – chronic pain be damned.
Really, what more could I ask for?
Today is the Vernal Equinox – the first day of Spring. I am ready for a new season, a sunnier season. This spring, I chose adventure. I strive toward health and pain-free days.
Above all, I remain committed to taking this journey one step and one day at a time.
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.
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
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
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.