chronic pain, Guest Posts, Surviving

My Moveable Feast

March 14, 2016
pain

If you are lucky enough to have lived in Paris as a young man, then wherever you go for the rest of your life, it stays with you, for Paris is a moveable feast.  —Ernest Hemingway

By Vicki Gundrum

A Moveable Feast is the only book of Hemingway’s I’ve read, and I’m nourished by the idea of memories. I know it’s more than Paris—it’s driving the ambulance in the Spanish Civil War, catching swordfish in the Gulf of Mexico, gazing on the Snows of Kilimanjaro, swimming in your Key West pool with your gay friend Tennessee.

I’ve lived a life like that, moving up, around and through the world like a hawk on an updraft. It was good and scary, and I collected three concussions.

***

My neurologist watched my face change into a Picasso. An eye shrunk and moved, a puzzle piece that should no longer fit, but face tectonic plates shifted to accommodate. My left eye teared. My doctor stared. She said, I’m watching you have a cluster headache. It’s not hemiplegic is it?

I told her I felt the pain behind my left eye but that the headache would become full bore on all parts of my head and face. She said she’d never before watched a cluster headache form. I didn’t say congratulations but I could tell she was excited. She grabbed me by my shoulders and led me to a room with a mirror in it so I could also see the transformation in my face, a reflection of the cluster in bloom. There, do you see your tiny eye there? Or was it my pupil that fascinated.

She rendered her diagnosis with the pride of competence: You are having both transformed cluster headache and transformed migraine, chronic and daily. I asked what transformed meant.

It means you don’t need a trigger.

Oh, I thought my trigger list was merely huge and unavoidable.

My doctor injected nerve blocks behind each eye and prescribed prednisone to break the cluster of clusters—for I’d had a Spring of them. I made another appointment with her but it never happened because she quit the HMO for private practice.

That summer I worked on my health. With a referral from a new doctor, I enrolled in a three-month course at the San Francisco Kaiser Permanente Pain Clinic with other headache patients too sick to work. We patients called it Pain School. We learned biofeedback techniques, meditation and visualization to help control pain, were treated with medication, referred for in-take with psychiatrists, sat still for acupuncture treatments. And we got shots of Botox®—botulinum toxin A—in our heads.

I am fascinated that this poison can be used as a medicine. Before it achieved fame as the wrinkle cure by its brand name Botox®, botulin was discovered on tainted meat and primarily known as the cause of botulism, a deadly form of food poisoning. Botulin is the most toxic protein on Earth, and, theoretically, one kilogram of pure botulin would contain enough poison to kill every man, woman, and child on the planet.

Botulinum is good for more than just death and wrinkles. The neurotoxin impedes communication between nerve and muscle cells, paralyzing the muscles in my forehead, temples, back of the neck—and forestalling my regular feedback loop of escalating pain.

Botox® reminds me of the Greek god Asclepius, the god of medicine. In his statues he holds a serpent-entwined staff, a symbol of the ancients’ belief in the gods’ mix of help and harm, the association between poisons and remedies. Today the serpent-entwined staff rides on ambulances, prints on stationery, displays on hospital walls: a hand-me-down tribute to the ancient god.

The brain itself cannot feel pain but pain signals tell your brain you’re in pain. The tissues covering the brain, the structures at the base of the brain, and the muscles and blood vessels around the scalp, face, and neck—these spasm or contract and pain signals erupt. Every three months a doctor injects me with a 600 percent greater concentration of botulinum toxin than any aging supermodels are getting. I get fifty units, or five aliquods, distributed among ten shots in a fan pattern shooting out from the bridge of my nose, plus two injections into the neck. I can feel like a hundred and look much younger with a relaxed visage and no wrinkles.

The first time I got the shots I felt the sting of them but not much else. I fell back into the pillow to rest, gazed at a Christ painting as it was a Catholic Hospital. A nurse held a mirror before me and it looked as though someone had lifted a crown of thorns from my head. She dabbed up the trickling blood but the pinpricks stayed.

It takes two weeks for the neurotoxin to kick in, I wasn’t watching the calendar. One day I woke and wondered what my friend Cat might be up to. I hadn’t seen her in a long time, having lost touch because I couldn’t maintain a social life. I was thinking it might be fun to hike with her along Crystal Springs Reservoir, right over the San Andreas fault-line. This day felt different, the crawl to recall and…I was happy. I was pain-free. I’d forgotten what pain-free felt like.

All stops if I’m in pain. Even fear shutters when my head hurts. My well-being, the past and future—none exist when pain is around. But I am right here right now, and nowhere else. My namaste space is more in the moment than yours.

Migraines are quite common among women but cluster headaches are rare, so I am special that way. Cluster headaches are an occupational hazard for boxers and football players. Cluster headache is nicknamed the Suicide Headache. Much worse is the Suicide Disease, which my friend Cindy suffers. Twenty-seven percent of people with the Suicide Disease—also known as trigeminal neuralgia—commit suicide. Both the Suicide Headache and the Suicide Disease are orphan disorders, too rare to receive research funds for treatments and a cure.

I didn’t want to kill myself but one time I was down with suicide. I was trapped in a full plane on a tarmac—midpoint for two international flights—and migraine had taken a seat in my lap. I remember heat, stale air, no beverage service, no food. The pilot moved the plane backwards and forwards repeatedly for nearly two hours to maintain our takeoff position. Everyone on the plane was complaining except a silent me. At the cruising altitude of 40,000 feet, I was at the knifepoint of throwing-up/not throwing-up in the little bag, for hours. The pain went to some other place called Just End It All; the only option was to not remain the same. I thought I might take the third pill, the one I was told never to take I could OD. I could take the third pill and pass-out and wake up later. Or maybe not. Or I stay at this knife point and slide down a blade soon. I reached a point that felt like no choice and took the third pill. Ten hours later I woke feeling better. I can take three pills! I was surprised and happy to be alive and in Seoul.

For each person there is a threshold of pain that is dangerous to life. The will to live is strong, even among those who kill themselves. I do not believe anyone is cavalier about it. The pain can be physical or emotional. Extreme pain can be tolerated but not if it is unremitting. Pain mixed with pauses from pain can be okay.

Hope with pain is everything—hope for pain relief, hope for a cure, hope for a solution to a problem. If someone is deeply depressed, that person has lost hope. It doesn’t matter if that person would deem his or her own problems solvable in a clear-headed moment, because that person is not clear-headed.

Pauses from pain are for some a failed suicide attempt. That is the thinking behind the semi-colon tattoo. A semi-colon is a pause, stronger than a comma but not an ending like a period. Some people who have survived suicide attempts are getting tattoos of a semi-colon. The tattoo signals that these survivors are willing to talk about their brush with suicide, the pause in their lives. A semi-colon looks like a person; the round head tops a self-comforting, curving-inward body.

I don’t know if I want the tattoos to catch on because that could mean two things.

Headaches are not a respected illness. No one uses the word illness or disease or syndrome. They use the word headache and everyone has had a headache so they say, oh just take a Tylenol. I’ve had over 2,000 headaches (the math: one menstrual migraine each cycle of 26 days up to age 35, plus 10 migraine days per month for 5 years, followed by the headache that didn’t go away, then Botox and intermittent attacks). I have medication and other strategies that lessen the severity of an attack, so I focus on that when I’m hurting. Thoughts can stray to suicide but I never plan it. I do have a phobia of flying, it has nothing to do with planes being heavier than air.

Someone posts on Facebook: If you complain you are embracing victimhood.

The Botox shots are not working as well as they should, not like they did when I was first stuck. My doctor ordered an antibody test. We learned Amgen Pharmaceuticals pulled the antibody test from the marketplace.

My doctor wants to stop the expensive Botox numbing shots. She also doesn’t believe in painkillers with a euphoric aspect, like narcotics and marijuana. She has no problems prescribing antidepressants.

I should say something happy here because everyone loves a winner.

The poor people and drug addicts I live among—since stopping working—are sympathetic. I told Emily I’m feeling poorly and want to be alone, not burden her with my problems, plus it can’t be anything like AIDS. She said No, this is the worst you’ve felt. I can’t imagine this as you say you can’t imagine AIDS. Anyone’s worst is the worst.

I smiled and it felt odd, like the smile muscles creaked from disuse.

I told her I’m certainly glad I’ve never had an abscessed hair follicle from a bikini wax, I think that would be awful.

There you go, she said.

And what’s the matter with Brazilians? They’re down there hair-removing, thonging it, sun-tanning, celebrating their own bodies like graven idols. Moses hated that shit. I remember Charleton Heston throwing the tablets. Brazilians pimp for joy—

—high-fiving the devil. Emily completed the riff.

I take solace knowing the neighborhood addicts could likely get me strong painkillers, if I ever asked. When I told my doctor I heard there were Fentanyl lollypops, I was told that if I had a prescription I’d become addicted immediately. I shrugged my shoulders. I try to avoid overt drug-seeking behavior with doctors. I probably fail at that, the doctors can probably tell from your eyes what you want. The fentanyl citrate, or Actiq, berry-flavored lollypops, eighty times more potent than morphine, are called perc-a-pops on the street.

Emily offered a solution.

Vic. You got one chance at this. You go for methadone doses at a clinic. To get started, take heroin. Once. Go to a clinic and test positive. Say you want to get clean. You’ll become addicted to the methadone but it will be monitored by doctors and will help with pain. You’ll never be able to go anywhere again.

I told Emily about my Moveable Feast, how I don’t need to go anywhere for real. I said no to methadone and told my friend I’d be moving on. I’m done with stuck.

I don’t tell everyone about my Moveable Feast because it would be like bragging, but I did swim in Hemingway’s Key West pool with his gay friend Tennessee.

Vicki takes comfort from her basenji, Ramsey. The basenji is from the Congo, the only barkless dog in the world, and perfect for people with headaches.

Vicki takes comfort from her basenji, Ramsey. The basenji is from the Congo, the only barkless dog in the world, and perfect for people with headaches.

Vicki Gundrum has been an editor with Macmillan, Simon & Schuster, and for a newspaper in Mexico. After becoming too sick to work she began writing. She has finished a first novel and begun a second–hard-won labors, happily pursued when her normal life stopped.

 

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Join Jen Pastiloff in Tuscany Sep 17-24, 2016. There are 5 spaces left. This will be her only international retreat in 2016 and is her favorite retreat of the year. Email barbara@jenniferpastiloff.com asap. More info here. Must email first to sign up.

 

Join founder Jen Pastiloff for a weekend retreat at Kripalu Center in Western Massachusetts Feb 19-21, 2016. Get ready to connect to your joy, manifest the life of your dreams, and tell the truth about who you are. This program is an excavation of the self, a deep and fun journey into questions such as: If I wasn’t afraid, what would I do? Who would I be if no one told me who I was? Jennifer Pastiloff, creator of Manifestation Yoga and author of the forthcoming Girl Power: You Are Enough, invites you beyond your comfort zone to explore what it means to be creative, human, and free—through writing, asana, and maybe a dance party or two! Jennifer’s focus is less on yoga postures and more on diving into life in all its unpredictable, messy beauty. Note Bring a journal, an open heart, and a sense of humor. Click the photo to sign up.

Join founder Jen Pastiloff for a special Mother’s Day weekend retreat in Ojai Calif, May 6th, 7th, & 8th, 2016.
Get ready to connect to your joy, manifest the life of your dreams, and tell the truth about who you are. This program is an excavation of the self, a deep and fun journey into questions such as: If I wasn’t afraid, what would I do? Who would I be if no one told me who I was?
Jennifer Pastiloff, creator of Manifestation Yoga and author of the forthcoming Girl Power: You Are Enough, invites you beyond your comfort zone to explore what it means to be creative, human, and free—through writing, asana, and maybe a dance party or two! Jennifer’s focus is less on yoga postures and more on diving into life in all its unpredictable, messy beauty.
Note Bring a journal, an open heart, and a sense of humor. Click the photo to sign up.

 

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6 Comments

  • Reply Gretchen March 14, 2016 at 3:37 pm

    Thank you for your article…I’m right by your side, sister. Due to a head-on car accident in 1994, where I had a neck injury and was treated with PT for 3 years, I started having 24/7 headaches in March 2008. And for good measure, migraines get thrown in there 3-4 times a month, too. Yes, my life has forever changed…especially after being diagnosed with Fibromyalgia, too.

    Yet I am grateful for many things; my loving and considerate husband of 38 years, the beautiful beach and shoreline walk I’m able to take every day, and seeing my 35 year old daughter thrive in her life of adventurous travels.

    Thank you for sharing. Best wishes.

    ? G

    • Reply Vicki Gundrum March 17, 2016 at 10:39 pm

      Hi Gretchen. Oh no, you too. I’m sorry you suffer headaches, from the injury and migraines, and also fibromyalgia. Do you know the connection between fibromyalgia and Lyme disease? A friend told me about this, you might want to get checked for Lyme. Both migraines and fibromyalgia largely impact women, and I wonder how that fact has worked against research and treatments. It’s good to share our stories. Best wishes to you and your family. V

  • Reply Lynn Hall March 15, 2016 at 2:24 pm

    I have chronic headaches too, both migraine and non-migraine. It’s always such a mixed feeling to find others suffering the same way. The positive is, of course, the knowledge that there are many of us. I related to so much of this.

    • Reply Vicki Gundrum March 17, 2016 at 10:43 pm

      Hi Lynn. I hope to speak with you at Lighthouse in Denver one day, one pain-free day soon. V

  • Reply Suzanne Magdalena Rolph-Mcfalls March 16, 2016 at 9:55 pm

    I think I exclaimed, “oh, fuck yes! ,” about 11 times while reading your essay. I want to thank you for writing this, every word resonates within me.
    What I have is a neurological disorder, not a Tylenol headache. It is crippling, but when I day “complicated migraines ” or “cluster” everyone says they get migraines.
    No. No, you do not. Stop co-opting the term migraine unless, of course, you’ve wanted to bash your own head through a wall to make it feel better. After you’ve finished vomiting and can see wider than a pin prick through squiggly flashing lights,that is.
    Mine aren’t botox responsive, but I did get those nasal inhaler rescue meds, they helped some. Then they didn’t. Like you, I learned my coping strategies. Meditation. I live “right in this moment right in this room.” I am here. Now.
    Thank you for this. It. Helped.

  • Reply Vicki Gundrum March 17, 2016 at 10:59 pm

    Hi Suzanne. Your “fuck you,” “bash your own head through a wall to make it feel better,”
    “vomiting”–we have a lot in common. Since writing the article, I’ve seen an eye doctor who believes I have a supraorbital nerve (a branch of the trigeminal nerve, the main facial cranial nerve) that’s involved in triggering the migraines, so there could be other treatments for me (i.e., nerve blocks in the notch over my left eye, hidden by eyebrow). Keep trying. Thanks for writing here. V

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