Four weeks ago, late on a Friday afternoon, I told a stranger to stab my ear with a needle, which incidentally looked more like a spear than any needle I’ve ever seen. I’ve used sewing and knitting needles for years. This instrument was different. In my memory, the needle is thick and dark, almost black, rather than the silver of stainless steel, and it is at least 2” long.
The tall, slender stranger sported an impressive array of tattoos, though I couldn’t tell you what they were. My heart pounded, my hands shook, and my vision narrowed to looking straight into his attentive eyes as he explained the procedure and what to expect. The bottom line? Pain.
From the tattoo bed I was propped up on, I then focused on the needle. With hands sheathed in black gloves, he bent the spear into a curve using what might have been needle-nose pliers or hemostats. Like his tattoo art, I didn’t see details of that instrument, either; just the spear. Even now, I am questioning my memory; was he bending the needle, or was it already bent?
“Are you ready? Hold very still. I have to put the needle inside your ear and, I don’t want to jab your eardrum.” He showed me the needle. I saw a spear.
“Could I ever really be ready? Do it.” I heard myself say these words at the same time I wanted to bolt, to change my mind, and get the hell out of there.
I squeezed my eyes shut and moaned with the intensity and in rhythm with the needle stabbing through its target, the first layer of folded cartilage at the entrance to my left ear canal. As this gentle stranger forced the needle through the second layer of cartilage I continued to hold my body as still as possible. I deliberately held my jaw frozen. I knew the movement of a grimace would pull on the muscles around my ear and possibly interfere with the precision of the piercing, or cause more pain, as if that was possible. I had told my friend standing next to the bed that I hoped I wouldn’t hurt her with the strength of my grip. She’d reassured me and held both of my hands as I lay facing slightly towards her, to my right, my eyes squeezed shut. For the entirety of the procedure, all of the pain emitted through my throat in loud moans while my hands remained limp and held by my friend. Her hands were my anchor.
“Now I am going to pull the earring through the hole.”
I wondered what others in the parlor thought as deep moaning escaped from my throat again, somewhat like a woman giving birth in a dramatic movie, despite my nearly rabid desire to keep quiet and show everyone how strong I am in the face of pain. This is a tattoo and piercing parlor. People know this pain. Some people do this for the beauty of body piercing jewelry, others for the pain of migraine. I leaned into these facts.
This is Daith Piercing and I most definitely would not submit to this kind of pain for the sake of body jewelry, no matter how cool it might look.
My name is Bonnie. I am 53 years old and I’ve lived with headaches, diagnosed as migraines in my early twenties, since early childhood. I am not unique or special. This disease significantly impacts the lives of millions of people. For some, their lives are so severely restricted by unrelenting pain and all that goes with migraine that they cannot live independently. Life becomes a battle for survival.
“Migraine is an extraordinarily prevalent neurological disease, affecting 39 million men, women and children in the U.S. and 1 billion worldwide.” https://migraineresearchfoundation.org/about-migraine/migraine-facts/
I am writing the chapter in Flight about life with migraine. Migraine’s presence in my life is woven through stories both personally and professionally. In many ways, migraine informs my identity. Over and over again I’ve had to adjust to limitations, ideas of who I am and what I am capable of doing and not capable of doing, in light of this disease. A few points in the story:
- flight in early childhood as a passenger in our family planes (altitude triggered severe headaches);
- daily hormone triggered headaches, nearly 13 years worth, misdiagnosed as “stress” and “wisdom teeth” issues in my early twenties;
- taking flight from my dream job as a hospital social worker (environmental triggers);
- increased migraine frequency correlated with traumatic stress;
- departing agency work (environmental triggers) to start a private psychotherapy practice – the last leg on my social work career flight plan.
Migraine was there all along influencing my choices and decisions. Migraine has been so much a part of my life, even back when I called it “headache,” that I cannot fathom what it would be like without the turbulence it brings to my life.
It’s a turbulence that requires a response more days out of the month than I care to admit: land immediately or fly through the storm and crash land later. Often I keep flying then crash land when my tanks have run out of fuel. I have a life to live and often I am running on fumes.
The Pirate Bitch – Healing Through Creativity (hint: writing and drawing helps!)
Migraine has a name these days: The Pirate Bitch.
Every day I work to take back what she steals from me during her frequent attacks on my mind, body, and spirit. With her venomous ice picks and steely vice grips, she pirates chunks of my life to fill her treasure trove that rots in the murky depths.
Three weeks ago I had a particularly intense migraine. By the 3rd day, as is the usual length of migraine episodes for me, I’d run out of fuel. I took my medicine, as I’ve done for years as part of my healthcare and survival plan, and curled up under the covers to wait. Thankfully it was the weekend and no one in particular, except my family, missed my presence.
Creativity helps manage the darkness and grief that overcomes me during difficult times in life. When I was able to come out from under the covers that day, I realized I had a new image in my head and something to say. I drew this picture as a way to try to conceptualize what it is like to live with migraine:
This is Healing through Creativity. This is not art for the sake of judgment and critique or improving drawing skills. This is an example of an active form of expression that heals emotional pain and helps with the processing of grief. You can use this example to explore your own challenges with chronic illness or pain.
I refuse to allow The Pirate Bitch to fill her ugly treasure chest with my life. Every day I fight to take back what’s mine. I put these things back in my own treasure chest which, by the way, sparkles in the light of day. Listed below are a few of the things she seeks to steal from me and a billion people worldwide:
If The Pirate had her way, she’d fill her treasure chest with every aspect of my life she could get her cold, scaly hands-on; she’d take it all as ruthlessly as a hurricane sea swallows a sinking ship. As it is, she decides what I cannot eat, smell, or endure. She has taken chocolate, cashews, perfume, pineapple, long days in the sun, the Reno Air Races a few weeks ago, and a shit-ton of other things from my life, like cinnamon, cloves, and nutmeg that signal my favorite time of year. No more pumpkin-flavored anything for me. She’s taken Simrit concerts as well, for I cannot breathe the air filled with divine incense without an assault on my olfactory system that reacts by sending the signal summoning The Pirate.
Despite all that I do not have control over, she will not take my fierce determination to get where I want to go; I will fight her to the death to keep what’s mine. Sticky gooey caramel is as luscious as chocolate and I can listen to Simrit and other favorites through the house speakers whenever I want, almost.
I do not seek pity for my pain nor praise for my warrior’s spirit. I seek education and cure, relief and compassion. I seek recognition that migraine warriors are all around us and some are our closest friends, family members, or co-workers. It is quite likely everyone knows a migraine sufferer whether they realize it or not. We often endure in silence and isolation because that is the environment we need in order to get through the attack. We often endure the assault in secrecy for personal and professional reasons. Sometimes we keep the facts of our struggle to ourselves because talking about it invites uncomfortable conversations.
Migraine is a baffling and complicated disease. Triggers change over time. Medications that work for an individual stop working without warning and everyone is different in terms of which medications help and which don’t. Some triggers, like hormones, cannot be manipulated effectively. If there were easy solutions we’d have found them; millions of us would line up for the cure.
If I could have stayed pregnant or nursed babies until my death I would have been home free. Yes, that’s right. The only period in my adult life being migraine free was during pregnancy and two years of breastfeeding. If only I’d been born before infant formula was invented! I would have made an awesome wet nurse and lived migraine free! Seriously, the nurses referred to me as a “breast milk goddess” in the hospital when my twins were born.
“Nearly 1 in 4 U.S. households includes someone with migraine.”https://migraineresearchfoundation.org/about-migraine/migraine-facts/
I, as all migraine warriors, seek a life of love and joy, despite migraine’s threatening vice grip. For the most part, I’ve succeeded, though waves of grief still wash over me when I think of the things I’d like to do but cannot because of this disease.
The darkness that descends upon me during an attack is a chemical misfiring that brings a change in mood along with severe pain, nausea, difficulty thinking, violent shivers, and weakness so powerful I’d crawl to the bathroom to vomit and live for 3 days, if not for medication. It is as if thick black crude oil is running through my veins.
My children can see it on my face despite my efforts to hide it.
“You look dark, mom. Do you have a migraine?” My son cannot explain what I look like but I know how I feel: depressed and sick, weak and frustrated. When the attack is over the feeling and the look goes away. I am me again. This pattern repeats again, and again, and again.
Positive Thinking and Hope
No amount of positive thinking can change the fact that I have a chronic debilitating disease. An illness that, although it is alarmingly prevalent, is little understood by society in general.
Positive thinking can, however, keep me flying and finding new ways to cope and refuel. Positive thinking creates hope. And hope is a powerful tool. I am the pilot after all. It is up to me to find my way. Positive thinking helps me find new ways of living with this disease while I continue working and pursuing my goals to the best of my ability.
Things That Help Me Deal with Chronic Illness
Yoga, meditation, writing, crocheting, painting, drawing, gardening, nature, sleep, the right food and medications, limiting certain types of activities, empathetic family members and friends, all of these things help me manage this disease. Life cannot be only about avoiding triggers; there must be joy and creativity, purpose and continued learning, a soothing of spirit in whatever form feels right. Whatever it is, each of us has to find our way.
Having purpose in life is a matter of life and death. Without purpose we are adrift in a vast ocean of life’s challenges without a compass. There is nothing to guide us, no direction or compass to set our sights with. Purpose keeps us going in hard times. Whether it is raising my kids, helping others, or being the best daughter or best life partner I can be, there is always a reason to keep going despite the struggle to manage the Pirate’s attacks. If sharing my story helps another soul cope with migraine, or helps their friend or loved one understand just a little better, then I will know I’ve found another purpose in my life.
I have a new policy sign hanging in my office. It requests clients and visitors refrain from wearing perfume, cologne, essential oils, and other strong-smelling scents in my office space. Clients are gracious and understanding. Some of them suffer migraines as well and odors are common triggers.
New triggers emerge over time. I’ve recently discovered my favorite essential oil, lavender, was quite likely doing me in. The diffuser will go the way of Obsession in my thirties unless I can find another lovely scent I can enjoy without a migraine attack hijacking three days of my week. At this point, “fragrance-free” is the safest choice.
The Pirate has taken another favorite. Fine. I’ll find another and keep going. In the meantime, I’ll continue to write and hope that I can achieve and maintain a healthy distance from she who is so deeply interwoven in the story of my identity. I wish to tell this story effectively; without the despair I only experience during an attack. No doubt she slows me down by stealing time and energy, but I will not give up. I will never give up.
Migraine, Desperation, and Hope
In case you were wondering and have read this far (thank you!), Daith piercing did not work for me. What it did do for me is motivate deeper contemplation and add to my story. I now have a cute little earring that I’m happy to tell you about if it helps you understand the words, “I’m sorry, I have to cancel” when you hear them from someone you know.
In desperation, we will ask others to spear our ears despite there being nothing other than anecdotal stories about it’s effectiveness. A friend had instant relief that has kept her migraine away for two years. Her story, and my neurologist giving me the “it can’t hurt to try” (ironic, huh?) “go ahead” was all I needed. Actually, those two green lights plus a year or so of trying to work up some form of courage to do it. How bad could it be? I had my earlobes pierced as a teenager. That was a piece of cake.
I can say, however, that for an hour or two after the procedure I experienced a mild euphoria, during which time I held hope that the procedure would work long term. Endorphins from being stabbed? I don’t know. A while later I noticed the migraine was still there. It continued into the next day.
I’ll never give up. I will take back everything within my power. The experience of Daith piercing has given me courage to write about migraine. It is okay that it did not work. It very well may have given me something more valuable than an end to the struggle.
I am more grateful than I can express for the relief provided by chemicals designed in a human-made lab. They make my life livable.
Without medication, I’d be like the “4 million people (who) have chronic daily migraine, with at least 15 migraine days per month (Migraine Research Foundation)”. This was my life before Nortriptyline, a tricyclic antidepressant used as a preventative in lower doses to treat pain.
I am also grateful for my neurologist who is one of those astute doctors who understands my struggle. I harbor an abundance of gratitude for my friends and family members who understand when I have to use those words, “I’m sorry, I won’t make it today.”
In a few weeks, I will head back to the tattoo and piercing parlor and pick out a new Daith earring. I’ll get something sparkly The Pirate will be envious of. I’ll ask the compassionate piercing guy to change my earring and thank him again for helping me take back what’s mine.
Resources and Support
- The Migraine Trust – education, support, facts & figures specific to the U.K.
- Facebook Closed Support Group – Move Against Migraine
- The American Migraine Foundation – find help, educate yourself, research, and more
- CHAMP Coalition for Headache and Migraine Patients – disease information & list of Support Groups worldwide
- Headache Australia – research, information, advocacy
- Mayo Clinic – Migraine
- How to Pamper Someone Who’s Having a Migraine
- Migraine Again.com – Does Daith Piercing Work? (and tons of education re: migraine)
Disclaimer: I write about things that have worked and not worked for me. This is in no way medical or mental health advice, treatment, or diagnostic information. If you have a medical or mental health condition, talk to your doctor or other medical providers about any questions you have.
Thank you for visiting! Do you suffer from migraine or another chronic illness? How do you cope with the loss associated with it? Do you have resources you can suggest?
You might also enjoy Invisibly Me Chronic Pain Awareness Month September 2019.