Professional Empowerment in the Realm of Disability and Invisible Illness

I had a weird feeling about it from the very beginning.

Of course there was the initial excitement of being emailed by a national television producer, but that quickly gave way to anxiety that at some level hasn’t let up since March 1.

Since becoming a writer and advocate for migraine.com, my personal blogging at home has become professional. I am technically freelance, though Health Union calls us all a team, and we all feel happily “employed” by that company. But I don’t have a boss, or anyone looking out for my best interests, to make sure I’m being properly treated, compensated, and served in any other capacity I advocate for migraine. I can only continue advocating for myself, for my own time and energy, the same way I do for my illness.

I attended the #huconnexion17 conference; was asked to attend the Amgen Bloggers Summit in LA; and filled out a form for a possible financially compensated video appearance for a so far unknown migraine awareness production. All of these were efficient, official, and I was either reimbursed or otherwise compensated.

Not so with this supposed WebMD / Robin Roberts Productions “Migraine Awareness” video series. Even though it was potentially huge, and John bragged about it to everyone he knew, I kept quiet. I was starting to be able to distinguish professional opportunities that were worth my time from those that probably wouldn’t be. Or wouldn’t happen at all.

Here is the email I sent them this morning withdrawing from the project. After all, there is no one to look out for me… except me.

Hello,

After getting up and assessing how I feel I am starting to have some concerns. I appreciate you reading this email rather than my having to try to explain this on the phone.

I was initially excited about this project due to the idea of promoting awareness for migraine disease. However, since first being contacted by Lynn Draisin on March 1, and then speaking with her on the phone a few days later and agreeing to be filmed, I have been told I was to be filmed here in mid-March with details to come. Then the plan was that I was to be flown to NYC at the end of March, so I began to make plans in that direction, but when I didn’t hear anything I had to reach out to both Lynn and Taryn to hear that this was no longer going to be the case due to scheduling but I would once again have to accommodate people here in my hometown. I was told by my migraine.com colleague Kerrie Smyres that Lynn was actually leaving her job with the production company. I sent Taryn many, many requested photos and then sort of got “passed off” again to someone else. While I totally understand that this is probably how these types of projects normally work, it’s not something that has been making me feel comfortable.

People with longterm chronic illness develop an almost permanent state of anxiety and PTSD due to things in our lives constantly being beyond our control. From the migraine disease itself to problems with disability and insurance and doctors and hospitals to no longer being able to work outside the home there is very little that is stable about my situation. To have yet another unstable and uncontrollable situation looming over me, because that’s how it feels, has begun to produce more anxiety and negative effects on me than the benefits that may be felt by me personally or the migraine community from my involvement. 

Health Union, the company behind migraine.com, and the Amgen Bloggers Summit, and the few other inquiries I’ve had about promoting migraine awareness through my writing or physical representation have all provided immediate official paperwork, statements of intent, project prospectuses, and promises of compensation. I’m realizing that in this situation, especially with the request of my young daughters to be involved, I have seen nothing official except assurances that you all work with Robin Roberts and that the series is going to be on WebMD. Not being able to control things like weather, my husband’s teaching schedule, my own secondary migraine symptoms (the severe pain has truly been lessened due to the CGRP trial medication but I deal with the other migraine symptoms of nausea, depression, occasional cognitive dysfunction, allodynia, vertigo etc on a daily basis), my daughters’ school and activity schedules AND the fact that I am not even going to be able to control the narrative your company presents about my personal situation, I have reconsidered appearing in the project.

Of course, I understand we needed to speak by telephone and that many of the issues of official paperwork, dates, times and plans may have been discussed then, but it’s not enough. My time is valuable, and I am not getting the impression from your company that it is seen as such. I hope that your project is able to move forward and that it does increase awareness of migraine disease, but it is going to have to do so without my involvement. 

I’m sorry to only drop this on you this morning, but I haven’t been well and only was able to figure this all out just now. Since plans have been continuously evolving on your end also, I hope you can understand my position.

I am cc-ing my husband on this email so please make sure to include him on any replies.

Respectfully,

elizabeth roberts-zibbel

ladymigraine.com

migraine365.com

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Flashback Friday

I stayed in bed all morning. Yesterday I had to give myself a Sumatriptan injection first thing; the morning before I’d needed to take a tablet. No migraine this morning, but maybe postdrome. In a sort of desultory way I scrolled through Facebook. I don’t always check my “On This Day” memories, but I did, even going so far as to read the blog post that came up because I remember it being significant.

When I went downstairs, I had a very uneasy, not-quite-anxious, not-quite-depressed feeling, an ache below the rib cage that made me feel helpless and vulnerable. My depression has been very well controlled lately, so I felt like I needed to figure out the source of this. Postdrome? Trump angst?

I finally realized maybe it was from reading the blog entry.

It was titled “WWED: What Would Elizabeth Do?” and was about the fact that I didn’t like who I’d become in the year since quitting my job and in fact barely knew myself. At the time I wrote it three years ago, Dr P had only recently dumped me as a patient after I bared my soul to him. I hadn’t yet seen anyone in my neurologist’s office, so I was without medication. It was before my first CGRP trial, before Dr Mac and Dr Mitzi, right when I decided to taper off Cymbalta, before John got his social work job. It was probably one of the lowest points of my life.

In the entry I described my crazy, desperate run through the hospital parking lot after Dr P so ruthlessly attacked me. I’d forgotten that I’d been sobbing, tore away from J and  fell, scraping my hands and knees. Reading the descriptive prose I vividly remembered how worthless and hopeless I’d felt, and scared I had been. It’s hard to explain how much being rejected or misunderstood by a doctor feels like the end of the fucking world for someone with a chronic illness. I had literally nowhere to turn.

That helpless, hopeless feeling today morphed into an uneasy vulnerability. While I am much happier and more fulfilled now, with new friends, new activities, new jobs, I am unfortunately at a bit of a crossroads again with my medical care. J has a fantastic job now at our local state university, as a full time instructor, which is another reason for my increased satisfaction now as opposed to three years ago. However, one of the most attractive features of a good job, for me, is the health insurance. I had been on Ohio’s expanded Medicaid, which was life-saving, but limiting, so I was excited to be on regular private insurance again and am particularly grateful for it now that the NOTUS is trying to repeal all aspects of the ACA.

But there was a paperwork issue. J filled out all the many many pages required for our family to be covered, and it all went through fine. What he didn’t know is that almost immediately, he would have to fill out yet another spousal form for 2017, as he will have to every year. He was behind on checking emails, falling into the “ignorance is bliss” ravine that so many of us do when overwhelmed.

On January 1, my coverage ended. I haven’t had insurance since then. J is trying to get it worked out, but because the open enrollment period had ended, now the HR people need my Disability paperwork, my Medicaid and Medicare paperwork. Which J found and gave to them. And then he didn’t hear anything. He had to go to his dean for help in speeding it up. This week, he still hasn’t heard anything new about the progress. Bills are piling up. The uncertainty of not having coverage constantly makes me feel on edge. Scared.

I finally have an appointment with a new family doctor in March, Dr. C. My spoonie friend Julie, who is local, found him first, having read reviews that he’s excellent with complicated cases. But again, uncertainty. Fear. My wonderful, sweet pain specialist, Dr. Mitzi, who refused to conduct pill counts and seemed so concerned with me personally, has apparently caved in to the federal pressure and taken an extended leave of absence. She does have a nurse practitioner, Judy, but she is considerably less warm and makes me very nervous. They are trying to find a replacement for Mitzi, but I have read enough horror stories from people in my support groups that I know it’s a possibility the new doctor will be a strict asshole who will not want to keep prescribing to me. Uncertainty. Fear.

But. The pain clinic isn’t closing, and Dr. C seems very promising. Even without insurance, if worse comes to worse, I can pay cash. Things with Dr. M (the neuro) are going okay. I haven’t had to go to the ER for six weeks. J is doing well, the girls are doing well. I have my work for migraine.com, which is a dream come true, and BG Independent News, which is so great I would never have fathomed my involvement in such a thing. Working with journalists I’ve always admired, in a field I chose for myself twenty years ago. Lucky. I’m lucky.

I have to let this false fear wash away. I have so much that is good right now.

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My girls on top of the Cape May lighthouse. X, Zo, & K, June 2014

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The cast of The Best Christmas Pageant Ever, December 2014

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Zo & me after her first Nutcracker performance weekend, Dec 2014

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Me at the Historical Center, where I frequently volunteered from 2014-2016

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Part of our theatre family. I’ve been on the advisory board since early 2015.

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Me & J at the Chamber of Commerce dinner with BGIN last month

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My migraine.com profile. I will be going to a conference in Philadelphia in March!

Thoughts on the inauguration of the NOTUS

Today I read a powerful blog post someone wrote called “Let the record show.” I linked to it; you should really go read it. I am not feeling very eloquent right now, and there’s no way I could communicate these thoughts any better than this author already did.

The NOTUS, Narcissist Of The United States, is not my president. I didn’t vote for him, I hate everything he stands for, I am horrified that Republicans are trying to wipe away the Affordable Care Act, which will likely lead to people DYING. (Pro”LIFE,” huh?) Newly involved in the business of journalism, I am paying attention to how he is treating reporters. I just read today that he is going to eliminate the National Endowment for the Arts.


I feel like our democracy has been yanked away from us. DJT lost the popular vote by almost 3 million. I am reading Chernow’s biography of Alexander Hamilton and feel indignant that he anticipated this exact scenario, hence the creation of the electoral college, but the Electors refused to use it the way it was intended. Now we know that Russia was responsible for the DNC hacking and Wikileaks release and STILL Hillary won the popular vote. The election is invalid. There is treason in the air.

Up until a few months ago I was on  Ohio’s expanded Medicaid. If John hadn’t gotten his university job…

I’m not feeling super great, and just rambling, really. I love President Obama, and going from him and his lovely family and the Bidens, who called The White House “The People’s House” and opened it up to poetry slams, concerts, and other cultural events, to Trump, who tweeted a ridiculous photo of himself “writing his inauguration speech” at Mar-a-Lago, calling it “The Winter White House” fills me with horror and disgust.

HERE IS THE WINTER WHITE HOUSE

Obama and his daughters play in the snow. Photo by Pete Souza.

DJT disparaged Muslims. He has a proven history of assaulting women. He strikes back at anyone who criticizes him. He can barely string two sentences together. He definitely has an unsavory connection with Putin.

I wish I could go to the Women’s March in DC, or the sister march in Ann Arbor, but I am proud to be participating and helping with the Disability March, which is now an official partner. If you have a chronic illness or visible or invisible disability and would like to participate, go to www.disabilitymarch.com.

Trump protest posters by Shepherd Fairey

Here is a portion of Obama’s goodbye email to the American people.


We shall overcome…

I definitely need to be taught how to say good bye.

The home of a Muslim family in a nearby city was vandalized with a swastika. After the outpouring of love they received, one of the family members painted over it. Their garage door was eventually replaced free of charge and the Toledo Symphony Orchestra played outside during a peaceful gathering.

DJT canceled a trip to the African American Museum on MLK Day after attacking Rep John Lewis for not attending the inauguration

I will never call him President. He will be DJT, or NOTUS, or He Who Must Not Be Named. And we are Dumbledore’s Army.

We now know they were listening to Obama’s speech the day after DJT’s “victory,” but still.


RISE UP.

When and if the time comes, I will do whatever is necessary to keep my family and friends safe. I also pledge to step up and intercede on behalf of anyone who needs help. I will attend and participate. I will teach my children tolerance and kindness. I will continue to live and work and write and play.

As scary as everything is right now (and make no mistake, I AM scared) I keep thinking of something Obama said at his last press conference: “The only thing that’s the end of the world… is the end of the world.”

We shall overcome.

Mix Tapes: The Buckle and The 8th Floor, 1997 (20 Years Later)

I am going to add to this entry now. When I first wrote it, I was thinking more about The Buckle and writing for a more general audience, even though I was already discussing really personal things. I just didn’t want to get into the details of my hospitalization that followed.

I just turned 44. It is now the twentieth anniversary of my week on the 8th floor of Toledo Hospital. The psych ward. I was there on my 24th birthday. Now, I want to write about it. It was an important part of becoming the person I am.

I recently got a 2002 RAV4 from my mother-in-law, and I have never loved a car so much. I have always wanted a small SUV, and she kept it well maintained, so even thought it has over 200,000 miles on it I feel it will continue for many more.

It also has a tape deck.

Earlier this year I bemoaned my lack of ability to play all my old mix tapes, which were like an art form for me. A friend had an extra boom box which she promptly delivered, and I imagined writing a new blog post for each new mix tape I rediscovered.  However, that never happened. The boom box sits in my room, with old dust and new dust.

A car tape deck though is a different matter. We all have to drive. I like to listen to music while I drive. I waited awhile and then, last week, I grabbed some tapes from my collection and popped the first one in, unlabeled, which turned out to be a taped-off-the-radio George Michael concert from the FAITH era and pieces of favorite albums (The Beatles, Led Zeppelin, and sadly, Boston). The tape survived being flipped and re-wound, and played well, so I listened to a couple more. I posted on Facebook about them.

A friend (one of those FB friends I’ve never met in person) commented how much he was enjoying my Tape Updates, and I thought again about possible blog posts. Facebook seems much easier, less time consuming. There is also the privacy of those for whom I made the original mixes to consider. But this particular tape, which was made just for me, Mix Tape #4 according to its Facebook post order, definitely needs its own blog entry, as it represents such a personal and important crossroads for me, along with its sister mix, “The 8th Floor,” made soon afterward.

The mix is called “Buckle Songs”.

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In February 1997, I quit my job at STAGE Stores Inc, which had been Uhlman’s Department Store until the sale / takeover. It was not nearly as enjoyable as Uhlman’s had been, particularly since, as an old fashioned Southern chain (one I learned during the presidential race of 2012 was owned by Mitt Romney), they told me I could no longer be manager of the Men’s Department. Because I’m a woman. And my fancy gold-plated five year badge with my full name and DEPARTMENT MANAGER on it was replaced by a cheap one with a sticker that said simply “E. Roberts.” No first names.

I’d also dated a co-worker with disastrous results (a man hired to work the Men’s Department!), and though he’d quit already, I had fallen hard for him and being back there was rough. I had graduated from college in December. I was ready to go. I spread applications to retail outlets all over BG and Toledo, because working retail was all I knew, and I liked it. Who called? The Buckle, a trendy clothing store at Franklin Park Mall, a 40 minute but very familiar drive north.

Because of my degree and experience I was hired to be a sales associate on track to become Assistant Manager. Tish, the manager, was very like other female bosses I’d had, though younger. She was sharply enthusiastic, and nerve-wracking. We were on commission. We were expected to “build on” sales, to not just help people find what they were looking for but also talk them into buying more. We were trained to look out for the types who were easiest to do this to. We got a 40% discount on clothes and could only wear what was purchased from the shop. My collection of Doc Marten boots and shoes, and Lucky Jeans, and thin, cheap, trendy tops would become monstrous. We’d all have “hold” piles and when paychecks were issued there was a long line to purchase. My sales were never high enough to begin the process of promotion to Assistant Manager, though I was a key holder, as I’d been at Uhlman’s / Stage. My migraines at this time were occasionally disruptive but I didn’t have to miss so much work that they were a real problem. I wouldn’t become chronic for ten more years, though I was definitely heavy episodic.

My relationships with my co-workers were pleasant, but I felt odd and out of place. Another key holder had dubbed The Buckle “The Meat Market of the Mall” as everyone who worked there was rather astonishingly good-looking, and easily classifiable into a “type.” My favorite co-worker was Jeff, my first flamboyantly gay friend, who was funny and sweet and danced like he was in a musical whenever “It’s Oh So Quiet” by Björk came on. There was the guy I had a crush on, Jake, who looked just like a Jake and was therefore not really my type at all. There was also Vinny, I think his name was, unless I just called him that in my head. He was sort of a combination of Keanu Reeves’ Ted and Alan Rickman’s Severus Snape, in retrospect. He had long shiny dark brown hair and loved the Wu-Tang Clan and tended toward the more “urban” line of Buckle clothes like JNCO jeans. The girls  were young and beautiful, from the one with long flowing wavy blonde hair to skinny, alternative types. [As I finished writing this the first time, I began to remember a more interesting and diverse staff (see update #1) but it is still true that everyone was exceptional in the looks department.] I had no idea where I fit into this schema. Since I’d been hired into management but stalled, I suspected I fit nowhere.

The best part of this job was, oddly, the music. We had lots of CD playlists to choose from, and they were all good, introducing me to some new things and re-affirming my love for The Beastie Boys, Björk, Liz Phair, Radiohead, Depeche Mode, Beck. Some of them were more club oriented and therefore totally unfamiliar, and I was able to track down my favorites for the mix: “Whoever You Are” by Geggy Tah (“All I wanna do is to thank you, even though I don’t know who you are / You let me change lanes while I was driving in my car”) and “(C’mon Ride It) The Train” by Quad City DJs. When these songs came on we would dance and sing unabashedly. There were 1980s mixes as well, both alternative and dance styles. The Buckle, not a bar or wedding, was the first place I ever saw the “YMCA” dance being acted out. Working there felt more like working at a club, but instead of drinks people bought clothes, shoes, and belts. Despite the underlying competition of being on commission, we all got along pretty well, though the social and friendly environment was not extended for me outside the store as it probably was for the others, who were mostly one to five years younger. I was about to turn 24.

This was the time period of a major self-destructiveness on my part. My life, private and professional, was a mess. I had dumped Craig, my longterm on-and-off boyfriend, the previous fall for the last time to date Hazelwood, the guy from Stage, who  in turn had dumped me over the phone right after Christmas. The relationship with Craig had been a seven year tempest of fighting, reuniting, being unofficially engaged and then breaking up and getting back together, hanging out and hooking up without commitment, though every time, it felt like coming home. I had no idea what I wanted to do with my life, and who to do it with. I thought I wanted to be with Craig, but I always thought that when we were apart. And I knew The Buckle wasn’t the right place for me but had no motivation to do anything about that. So I did stupid stuff like driving around the parking lot during lunch breaks with Vinny, in his car, blasting music while smoking weed and menthol cigarettes like that was our actual job before returning to work the rest of our shift. I let some stranger “pick me up” at the store, and dragged my friend and her boyfriend to his house, which was a glass and white monstrosity in northern Toledo at which he turned out to just be crashing. I remember there was weed spread all over the glass table in the living room, and I suspected there were other drugs tucked elsewhere. We smoked this weed. I went back by myself next time. The guy, Derrick, was a drifter with a temporary type job, but was actually pretty clean and cute and ended up not being a crazy asshole or rapist or killer; he didn’t slip Rohypnol in my drink, didn’t poison the food he made for me or get angry at my “everything but” reticence. In fact when I declined to see him again he seemed extremely crushed. I got lucky there. I also invited a random kid into my apartment when he knocked on the door looking for someone else, and smoked his weed too. I smoked so much weed belonging to strangers and near-strangers that it is astonishing I never stumbled upon any laced with anything. 

More emotionally significant than any of those encounters, I went to visit a good friend from college whom I’d always been desperately attracted to. It was mutual, but our timing had always been off and we had never dated. We consummated the five year intense flirtation very anti-climatically, but still I foolishly thought we would be together after that since we were both finally single. Which would mean we’d have lots of opportunities to improve on that score. But no. He said he considered it a logical progression of our friendship. And those migraines, he said. I don’t know if I can handle how sick you get. I told him that as far as I was concerned our “friendship” was over for good. To this day it remains my only true one night stand, which seems ironic to me because I loved him. I was devastated. My downward spiral got deeper and deeper.

I know this “risky behavior” is somewhat laughable. Even in the late 1990s it was known to everyone that marijuana is spectacularly safe. The promiscuity, though emotionally damaging, wasn’t physically dangerous as I only slept with Craig when he was in town and my “friend” and I knew both their histories and used protection. I didn’t snort cocaine off the glass table, I wasn’t shooting heroin. But for relatively cautious me, these risks felt huge, and I had the tantalizing spectre of my luck running out, the possibility always on my mind. I wanted it to run out. Because I was fucking miserable. And I needed a Deus ex Machina of an overdose or severe injury to derail me. I ended up derailing myself, but it was like a quiet, tipsy drive off a foggy road into a ditch rather than a plane crash.  Oh yeah, I drove home drunk from Toledo too, but that was a couple of months later, when I was working for Family Video in Sylvania. We used to go to a nearby dive bar afterward, where my newly tattooed young body was, it seemed, tantalizing to my middle-aged average male supervisors who enjoyed buying me jello shots. There, I was in transition, trying to re-build self esteem but letting myself be objectified, my tattoos not allowed to show at work, despite the “Adult” section behind a red curtain in the back. Family Video was the final frontier of my displacement and I’m glad I didn’t have to stay there too long with its 45 minute commute for $7.50 per devastatingly demoralizing hour. But the job was a necessary stop gap and again I was lucky that my remaining destructiveness didn’t cause permanent damage before my real life could begin that fall.

First, still at The Buckle as my birthday approached and a Back To School fashion show was being organized, I had to ask Jake to attend a party with me, have him say yes and then totally blow me off when the day came, after which I drove home in a thunderstorm sobbing and ended up in the cemetery, taking some pills and quitting The Buckle by phone from a hospital bed. I also arranged an interview at Family Video from the hospital.  Jake blowing me off was a last straw, the hiring of a new Assistant Manager another last straw, the memo we all received about a company issue called “Familyocity” where you cared about your co-workers too much to compete with them or fire them was the last last straw. Oh, and the fashion show that kind, handsome Brent put together that I was supposed to participate in with all the hot youth that I couldn’t actually bear to imagine. Me? Strutting down a catwalk in the middle of Franklin Park Mall? I was realizing NOPE fast. Brent was the only one to call the hospital to make sure I was okay. Brent, thank you. Jeff had already fled to work at Sufficient Grounds with Sarah, another favorite who was also someone I could have been friends with outside the Buckle world. I sincerely wish I had stayed in touch with both of them.

I actually visited two cemeteries that night after Jake blew me off. The first was where Craig’s first grade best friend was buried, though I couldn’t find his grave in the dark, even with the lightning’s occasional illumination. I moved on to the cemetery in town where I could find my own friend’s headstone with my eyes closed. She had died of leukemia five years before. I lay down on the wet grass, six feet above her forever 19 year old bones, wishing I had died instead, wanting to take her place, lightning streaking above through the swishing tree branches. The pouring rain obliterated my hysterical tears and I imagined disintegrating like the wicked witch, melting into the earth.  

When I remained stubbornly solid and conscious and waterlogged, desperation guided me to my parents’ house rather than my apartment which no longer felt like home, occupied as it was by my former best friend and her fiancé, a recent pairing which felt like a slap in the face. I only wanted to sleep for as long as possible, but did not take enough of the Fiorinal 3 capsules (a barbiturate/ codeine / caffeine compound to treat tension headaches) to even accomplish that. Six of the blue and yellow dolls only caused tremors and increased my misery and I was a bedraggled sopping fetal mess on the couch when Mom got up to get ready for her Sunday morning choir directing gig. 

In the emergency room, I talked to the psych person who was on call. I remember saying “My birthday is in a few days,” and I guess that along with the summary of my desperate disaster of a summer (entire year, really) convinced him that an inpatient stay might be called for, and I agreed, with what must have been relief. Take me out of my own hands, I imagine thinking.  No more choices. All of my decisions have been wrong. I imagine thinking on that Sunday morning, save my soul.

I maintain that my week-long stay in Toledo Hospital’s psychiatric unit was as interesting as any of the books or movies about the topic (thinking mainly of Girl, Interrupted and It’s Kind of a Funny Story). I kept a journal, and while I’d be hard pressed to find it right now, the writing and then the re-reading of it over the years caused it to be lodged much more permanently in my sieve of a memory than many events in my life.

Starting with being in the locked PIC ward (psychiatric intensive care) on suicide watch, everything being taken away from me, a small shatter proof double paned window. A bed. I was given Ativan and I slept. When I was transferred to the regular ward I had a room mate who named Nicole was a self-harming bipolar young woman, ugly black scabs on her skinny forearms. I remember her saying “You just gonna lie there all day? Come on, come to the common room with me.” And so I began to learn the mysterious, hyper-scheduled routine of the 8th floor, a hospital where you are not allowed to be in bed. A hospital with a smoking room, arts and crafts, exercise, group and individual therapy. 

The smoking room. At scheduled times we shuffled in, lit our cigarettes on special lighter things mounted on the wall, and chatted and gossiped. This is where real therapy took place, unsupervised. My dad brought me some Marlboro Light Menthols, my slow suicide of choice at that time. We lived for the smoking room. I learned that most of the other patients were bipolar and / or had attempted suicide. 

Highlights

    • In art therapy I painted a plaster dinosaur and a serenity prayer plaque. Our days started with a “morning stretch” before breakfast. I was always cold. For the first two days I had no migraine medication.

    • There was a large lady of color named Eugenia who was always concerned about the pieces of pie she hoarded in the shared fridge. She often accused “the teens” (in a separate ward) of sneaking in and taking them.  I never learned why she was there, but I loved her, and she became fond enough of me that before I left she gave me some of her clothes that she had gained too much weight to wear.

     • Group therapy was totally  ineffective. We often had counselors who were far younger than most of us, and worse, seemed to know less than we did. The condescension was hard to take. During one session, without deciding it beforehand, we all asked complicated questions in order to fluster the young man leading the session. Then, a short and funny patient named Deb jumped up and wrote two letters on the dry erase board with lines under them: P (patients) and S (staff). With a flourish, after the counselor had gotten particularly frustrated, she placed one hashmark under the P. She was keeping score! I remember it going on for far longer than you might expect. Then of course we were all sent to our rooms and threatened with some sort of punishment but we were SO proud of ourselves. That was the first time I thought This is like a movie and I’m living it. 

     • In another group session a patient fell off her chair and had a seizure. After it was clear the counselor wasn’t going to act, Deb got up and assisted the person while the counselor finally picked up the phone in a panic and dialed for help. I had begun to rely on Deb’s confident presence, which is why it was sad for me when one day she was missing. “She freaked out last night,” someone confided. “She has to get shock treatment today.” I didn’t see Deb again.

     • The day of my birthday, I received a lot of phone calls. These were announced over a paging system, and then you would go out to the phone “booth” in the common room. One call caused me to be late for a smoke break. After the attendant escorting me unlocked the door, I rushed in with my Marlboro between my fingers. I felt all eyes on me, some curious, some resentful. “YOU sure are getting a lot of calls.” Someone said. “Well…” I hadn’t wanted to make a big deal of it. I lit my cigarette from the wall and said, “It’s my birthday.” There was a beat of silence and then the room erupted. “WHAT?!”  “Happy Birthday!”  “No way!” “Why didn’t you tell us?” The next think I knew, someone had started the birthday song and everyone was singing. And their voices were surprisingly melodic. You haven’t lived until you’ve had Happy Birthday sung to you by twelve smoking nutcases. It is one of my favorite memories, not just of that week, but my entire life.

My psychiatrist decided to change my medication from Effexor to Zoloft. He listened patiently to everything I had been going through. When I mentioned something about my endometriosis (for which I’d had two surgeries and was taking a medication to put me into a false menopause), he inquired about my fertility. I told him I didn’t expect to be able to have children, that my first gynecologist had encouraged me to put off or skip college in order to have a baby as soon as possible. The psychiatrist was horrified. I felt so validated by that. He mentioned a therapist he wanted me to see, a psychologist who was also an RN named Virginia. I continued seeing her for years. She is the best therapist I have ever had and Dr. Mac (current psychologist) reminds me of her.

The mix I made right after getting out of the hospital is a nearly laughably typical late nineties depression mix with Nirvana, Soundgarden, Fiona Apple, Natalie Merchant, Depeche Mode, and the Cranberries. It took a number of months to put my shattered self back together. I found a tiny apartment in which I could live by myself with a huge skylight instead of windows; it was above a print shop which made it smell like ink. The smell didn’t bother me; in fact I loved it. Even today when I walk downtown past Wizard Graphics and the ink scent hits me, it fills me with calm. I also applied for a job at Grounds For Thought at my mother’s insistence, a coffee shop / used bookstore a block away from my new apartment, even though I didn’t feel cool enough to set foot in it, much less work there. But I was hired. The Buckle (a symbol for the more important events of graduating from college, being dumped and losing Craig) had broken me, and as the pieces started to fit back together, I became the me I would be for the rest of my life. I was poised on the edge of meeting John and all the people who would matter in the years to come. When I was promoted to full time Night Manager at Grounds in October of ’97  I was able to finally quit Family Video, where they were quietly disapproving and suspicious of my “moonlighting” at a coffee shop. I worked at Grounds for almost a decade, through meeting and dating John, getting married, getting pregnant and having X, and going chronic.

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My “Buckle Songs” mix contains mostly the happy, dancy music that made us squeal and start dancing in place no matter what we were doing when the songs came on. Some of the songs reflect my frenetic despair. There are a few songs from Baz Luhrman’s Romeo + Juliet, which was important to me at the time. It started with Urge Overkill’s “Girl, You’ll Be a Woman Soon” from Pulp Fiction and ended with “Make It Home” by Julianna Hatfield, which had been in the Christmas My So-Called Life episode when Rickie was homeless. As I found more songs from our actual Buckle playlists I replaced throw-away songs with more authentic ones, so it was edited a few times over the next year, much like my actual evolving life. I got more tattoos. I grew up.

 

**Update: While listening to the Buckle mix while driving everyone to school (at three different times), a memory suddenly came back to me of another co-worker I’d totally forgotten about, a beautiful young woman of color who vividly called out the Presidents of the U.S.A. regarding the real meaning of their song “Peaches” and claimed joyfully that she was going to wear a t-shirt saying “KILL WHITEY” to get out of her impending jury duty.  I realized that the Buckle staff were much more diverse than I initially remembered, though undeniably everyone was very attractive. My friend Sarah, whom I’m recalling a little more clearly now, was a short, adorable ginger with a nose ring; not waify and blonde or heroin chic. This was the most unique group of people I ever worked with, which I sought to re-create when I began hiring at Grounds. And I still say I had the best Grounds Crew there ever was and ever will be again. 

***Update #2: The Buckle mix also seems to be telling me to hold on and be patient; that my real life, and even John, were right around the corner.

****Update #3: For one week near the end of summer, the girls attend Hogwarts camp. Last year while walking them through Diagon Alley, I heard a voice exclaim “Elizabeth?? Oh my gosh!!” She was in costume as a professor and head of house, and to be honest I still don’t really remember her, but she had been a co-worker of mine at The Buckle, 19 years before. “How ARE you? I married Todd, you know, the other keyholder? Our two kids are here. Are these yours?” Todd was the one who coined “Meat Market of the Mall.” I couldn’t believe this woman remembered me so clearly when I felt like such a lame imposter while working there. Their older son ended up being placed in X and Zo’s house. He and X got along SO WELL. They are both funny and random, and cute, and I loved watching them together last year and this year, 11 and 12 years old with no idea of their parents’ inauspicious joint past. Their friendship feels like the best kind of closure, the children being gemstones with their genesis in the summer of my rock bottom.

I am now a Patient Advocate and Contributor on Migraine.com

Sometimes, everything lines up in exactly the right way.

My favorite headache blogger, Kerrie Smyres of The Daily Headache, had posted an article about several available CGRP studies and the pros and cons of getting involved. Since one of the studies was Amgen, I commented that I hadn’t had a hugely noticeable improvement on that drug, but that I would soon begin a new study. I didn’t think anything of it as Kerrie doesn’t always interact with readers, though she had been very helpful to me a couple years ago when I was considering trying Ritalin as a preventative, which she had also attempted. 

So I was pleasantly shocked and super excited to receive an email from Kerrie thanking me for giving a shout-out to her company TheraSpecs in an advocacy post on Facebook. She then asked if she could interview me for either her personal blog or Migraine.com about my experiences in the CGRP studies. 

The CGRP drugs in development right now are going to completely revitalize migraine treatment. They will be the first drugs to be created for the prevention of migraine – think of that. 36 million people in the US suffer from migraine and ALL the drugs used to prevent them are for other things. Used off-label for migraine, most cause significant side effects and are very hit or mis in their effectiveness. So there are millions of people waiting with bated breath for the new drugs to be approved, drugs which target migraine specifically and have no detrimental side effects. Needless to say I was ecstatic to speak frankly about my experience on two of the new drugs, and opted to have it published on Migraine.com  for the largest audience.

Kerrie sent me an email of very specific questions. My migraine brain had a hard time recalling all of the details, so I dug up my consent forms and checked my blog for dates and information. I answered the questions as thoroughly as possible, Kerrie asked for clarification on some things, and said she would submit the article to be published when Migraine.com was ready.

It was published, which I blogged about previously, and I interacted with some readers on Facebook. Because of this article, and probably this blog, it was decided that I would be a unique and valuable voice as an actual Migraine.com Patient Advocate and writer, and I was asked to join the team.

It is hard to describe to someone outside the chronic illness world how exciting that was. It would be sort of like if a musician who plays local bars in his hometown was suddenly asked to tour nationally with famous bands he always admired. I’ve been blogging for five years to around 300 people. Now some of my writing on migraine will be seen by at least 60,000. And those are just the people who subscribe to the newsletter.

I will still be blogging here about more personal topics and will post my migraine.com articles after they are published. I have two posts ready to go, whenever Migraine.com is ready. I am completely thrilled to be joining this illustrious list of advocates including Katie Golden, Tammy Rome, Diana Lee, Nancy Harris Bonk, Anna Eidt, Janet Geddis, and Jennette Fulda, whose book Chocolate & Vicodin I have been wanting to buy for some time. All of the contributors have so much to offer and I am excited to get to know them better and become more familiar with the names I didn’t know previously.

I am @headcase73 on Twitter.

Life has been hard for several years, but J and I have been working hard to make things better. And I think we’re succeeding. 

Yay!

My CGRP interview on Migraine.com

I always feel guilty when I return to the blog after a long absence, which seems silly. Like I need to explain myself. Life ebbs and flows  and I often find myself unable to do everything I’d like to be doing. I just can’t fit it all in, which I think is a pretty universal experience, especially adding in school-age children and chronic illness.

I don’t think I ever let everyone know that J got the job he so desperately needed to get at the local state university. So many of my entries over the last 2-3 years have focused on our poverty, and I hope we will be finally digging our way out of that hole. Our normal, non-government insurance coverage will begin in a few weeks and I can finally find a new doctor and file a complaint about Dr S.

I just started a second CGRP study, and Kerrie Smyres who blogs at The Daily Headache interviewed me recently for an article on migraine.com. It was published yesterday, please read it!

X is preparing for a theatre competition this weekend and starting middle school in a few weeks; Zo was awarded the roles she wanted in this year’s Nutcracker. I have been occasionally serving at my friend’s nanobrewery and contributing to a new online news source in my hometown, which I’m very proud of. In all, things are… dare I say it? Good.

Chapter 1967: My Man Wrote a Short Story



Chapter 1967

By The Mechanical Cat

Norma Jeane leaned back in the wooden chair and gently let her hand drift down her leg to feel the comfort of the snub-nosed .38, snugly holstered against her earthly thigh. A wisp of smoke left her mouth and danced toward the ceiling of the cabin. “Well, since every fucking agency and commission on the planet knows what’s going on in this cabin, what’s the plan now kitty-boy?” Norma’s voice was raspy.

“We’ve got an entire social revolution underway,” I said. “It’s a good diversion for now.”

“Obviously not fucking good enough. Do you even know who is outside?” Norma asked.

Across the room the glowing red eyes of the Mothman could be felt like the aurora borealis. He stood and walked toward the table where I was sitting with Norma. A murky hypnosis spread around us as the  Mothman tried to communicate.

“This is shit,” said Norma. “No fucking way. I am not doing it.” Bigfoot looked at the platinum blond wig and rhinestone dress lying in a heap on the table and raised a hairy eyebrow. Click. Flame. Cigarette. Norma inhaled and out blew a cloud of smoke. “Right now there are twelve agents out there. Watching our every move. Listening to every cigarette I light. Every word we speak.”

“Listen Norma-”

“No, you listen, Cat. Marilyn Monroe is dead. DEAD.” And she raised her eyebrows, expecting a response. She tilted her glass of whiskey back to her mouth and finished what was left. “I’m going out there.”

“Norma, it’s too dangerous” said Bigfoot through a face of fur.

“Nice,” said Norma. “Fuckin awesome. I thought you were-”

“You can’t leave yet,” I said, leaning forward through the shadows and smoke of the cabin. “We’re going with you.”

“I don’t need the help. I can take care of myself.”

“Not this time Norma, those aren’t CIA agents, those are inter dimensional beings called flyggian pony scouts.”

Norma looked at me with a suspicious smile. “Don’t act like I’m some naive school girl. I know what a pony scout is.”

And with that, Norma was out the door. Gun shots exploded in the darkness like camera bulbs flashing on her wooded stage. A red carpet spilled beneath her feet. Her attack was silent – violence at an efficiency matched by few others.

The quiet that filled the forest after she was done was complete. You could hear pine needles hit the dirt. Her heavy steps across the floor of the porch and then through the door – you could tell she was pissed. Norma sat down where she was, almost unchanged except for the freckles of blood she had attained in combat.

“How the fuck did you kill twelve pony scouts with six bullets?” I asked.

“Magic bullets,” Norma said with a twinkle in her eye. “How do you think we pulled off JFK?” A growl erupted from Bigfoot, which Norma silenced with a glance.

“I thought there was more than one gunman?”

“Well that’s just it,” said Norma. “There were no gunmen. There was a gunwoman, and a gun Bigfoot… and I don’t know what the fuck Mothman was doing. Mothman was the umbrella on the grassy knoll. I still don’t know where he’s coming from most of the time. Bigfoot was a terrible shot so I had to finish him off.”

“Where was Bigfoot?”

Mothman communicated telepathically to everyone in the room:

***bigfoot cannot be seen in direct sunlight***

“Where were you?” I inquired in complete shock.

“Dressed as Jackie. Had to make a getaway. Jumped out of the back of the car, but the Secret Service pulled me back in…” her voice trailed off. “Back and to the left. Back and to the left.”

“Oh…my…God. Why did you kill him?” The stare and silence between us could have stopped galaxies.

“Love and revenge. As simple as that.”