I am so honored and excited to be nominated for a WEGO Health Activist Award for my blog! I started this blog a year ago as a way to slowly untangle the threads of this illness and make sense of it all.
Writing about my experience with chronic migraines and chronic pain has been more rewarding than I dared to dream. I have connected with so many people who are tying to untangle their own knots, and we have been able to help and support each other. I am honored to a part of the chronic pain community because we are a community that constantly builds each other up, no matter how much pain we are grappling with ourselves.
If you have read and enjoyed this blog, please consider endorsing me for a WEGO Health Activist award. Today is the LAST DAY to vote, so don’t wait! The nomination page is filled with some of the strongest, most eloquent, and most tenacious chronic illness warriors. You don’t have to just endorse one of us – spread the love!
Wild places to walk, sweat, explore, and breathe in are precious. Growing up in the suburbs, wild places that were near to me were made even more precious by their rarity.
I was surrounded by concrete and the inescapable roar of engines, but I could retreat to a wild place. I was lucky enough to grow up near the ocean and the wetlands. I run on dirt trails and watch as migratory birds pass through our coastal home. Migraines make me spend too much time in a dark room, but I am able to practice my own ecotherapy in these wetlands where I find nourishment in fresh air and clouds.
My favorite running route wound through a large field that was half strawberry field, half undeveloped chapparal. Songbirds, raptors, bunnies, and squirrels called the large area home. I ran through the field and along the channel hundreds of times, passing the same dog walkers and familiar bird species each time.
The strawberry field is now gone. The raptors perch in snags at the edges of what used to be a thriving field. The drone of engines is inescapable as tractors comb the wet earth, flattening and scraping for the neighborhood to come. It is impossible not to mourn the loss of this wild space and the wild things that called it home.
A neighborhood behind me stands mostly empty on the bluffs. The bluffs provided nesting sites for large herons and egrets. The houses are huge and mostly alike, but for some reason, no on really lives there. Who decided to replace these wild homes with more empty concrete ones?
One Less Wild Woman
This is, of course, not the first or most dramatic time I have mourned the loss of wild things. I spent summers in my early 20’s living, working, and playing in the Sierra Nevada mountains. I fell in love with rivers and mountains, lakes and peaks. I lived in a tent cabin and spent as many nights beneath the stars as I could.
I worked on a river and a lake. I guided hikes and campfire programs. I met people from all over the world and swam, hiked, and loved the mountains all summer. Fall, winter, and spring were spent dreaming about getting back to the Sierra. I continued to run and climb indoors, preparing my body for miles of adventures to come.
A few days after my 24th birthday I awoke with a migraine. It was a persistent one, and it seemed to launch me into a new life of chronic migraines. After several weeks in bed, I said goodbye to my job and mountain home. My migraines and I spent the next three years healing in the suburbs. It was the most trying period of my life.
One Less Wild Cat
Sometimes caring for another helps you care for yourself. A rescue kitten came into my life shortly before my 27th birthday – just last June. He was sick, blind, and needed a home. I had no intention of adopting a pet until I met little Jupiter (aka Goop). Knowing how it feels to be lonely, sick, and stuck in the dark, I couldn’t let the little guy go back to a hard, wild life despite his special needs.
The last thing my life needed was responsibility and more medical bills, but that is what I got. Like most reluctant pet parents, I wouldn’t have it any other way. Migraine days and good days alike are made better with a companion and kitten cuddles.
A New Wild Home
The domestication of both Jupiter and myself is finally coming to an end! Last week I signed the lease on a new home in the mountains, not far from where I lived before chronic migraines. The relief and gratitude I feel every morning that I wake up to smell Jeffrey pine trees and listen to nuthatches call to each other is indescribable.
The transition period is still in full force. My clothes are in boxes, and I left my kitten at my parents’ home for another week. The aspen trees are turning brilliant orange and the air is noticeably crisper. Soon the snow will come and we will settle in to a season of warmth, health, and growth.
Moving back to the mountains and creating another wild home was a dream too big to consider for years. Now, thanks to a part-time job with an understanding boss, fantastic roommates, and my always patient boyfriend, I once again feel at home. I once again feel wild.
“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
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.
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.”
Sorry for the double posts, but I’ve just signed up for Bloglovin and I would love to see you there. If you haven’t yet used it, Bloglovin is a great place to read all of your favorite blogs and find new ones in one window. It’s easy, free, and beautiful.
Check it out and follow my blog to stay up to date.
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
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
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.
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.
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.
(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.
Like Audrey Hepburn unfurling her wings in an intellectual jazz bar in Funny Face , I have been reuniting with my body and mind by making them dance. Quite literally in the case of my body, at my boyfriend’s band practice or to Beyoncé in my car. As for my mind, pirouettes twirl in the form of words and symbols. Reading, writing, creating, listening to music, and observing art all set my soul dancing.
I quit ballet rather suddenly the winter I was 12 years old. I had just graduated to full pointe classes and was at the studio for instruction or rehearsal three days a week. I received new leotards and permission to shave my legs as early Christmas gifts. The whiteblonde leg hair grew through the holes in my black tights and contrasted starkly. Thanks to puberty, my period, braces, circular Harry Potter glasses, and a new resurgence of migraines, my 12th year was crappy enough without the embarrassment of a leg-hair-ballet-tights situation. Luckily my mom was merciful, and I am not as easily embarrassed these days, so you get to hopefully find delight or commiseration in my awkward middle school self.
Dancing these days is much more relaxed – the dancing of a few beers, old friends, and a clear night sky. Or to an afternoon breeze through an open window, no witnesses to my lack of rhythm except the noisy hummingbirds outside. I watch monarch and mourning cloak butterflies in my garden dance, twirling around each other like in water. I twirl myself sometimes, around my nephew, his young friend, and a full shopping cart, trying to wrangle the three irrational beings. The music and din of market conversation is always so loud, the lights so bright, the experience such a dizzying rush that it feels like a dance performance. But we are rewarded at the finish with fruit instead of flowers.
This piece was originally published by Skirt Collective at www.skirtcollective.com.
I recently received a kind e-mail thanking me for this article and requesting more on the subject. While I’m not an expert, I am happy to republish my insights with the hope to help other couples make love work despite distance.
Long distance relationships suck. There, I said it.
It sucks to check your phone every five minutes. It sucks to spend Saturday with a book while your boyfriend is at a party 3000 miles away. It sucks trying to find someone to see “Gone Girl” with because all of your friends already saw it with their significant others. It sucks to stare at a pixilated face on a screen instead of a flesh and blood, kissable person.
When your partner is hundreds or thousands of miles away every aspect of your relationship is trickier – communication, trust, fights, sex. My boyfriend and I have been battling the distance for the better part of three years. Like many twenty-something’s we are nomads, moving where our jobs, family obligations, or travel adventures carry us.
Unfortunately, despite our efforts, our lives often carry us to different corners of the U.S. During the past three years we have become accidental experts on long distance relationships and the trials they bring. We’ve fought, we’ve lived together, we’ve moved away from each other, we’ve planned, and we’ve been disappointed. We’ve said goodbye and reunited more times and in more places than I can count – in airports, strip malls, the side of the highway, front porches, and urban street corners.
Long distance relationships may bring a fair amount of suckiness, but they also bring wisdom. The lessons I’ve learned about love, live, and myself during these three years (and counting) of distance have been hard won but valuable – not just for my long distance relationship, but for any relationship.
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.
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.
I have heard my mother tell the story of my toddler migraine attacks to several neurologists and doctors over the years, and she always includes this exchange:
Mom: Please don’t tell me she has migraines.
Dr. Dias: I can 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.
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.
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.
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
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.”
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.