A Narrative By Aly Jones
well, you wouldn't be ashamed of having cancer, would you?
it only feels right to begin this by telling you i can’t think of a way to begin this, so here we are. i guess the real start is acknowledging that i kind of disappeared for a year, and i have been/still kind of am ashamed of what happened, hence the title. however, it's important to me that my friends and family (you’re one of those!) know where i’ve been because, while i really appreciate people asking what i’ve been up to, i get tongue tied in person and generally make the whole thing a lot weirder than it has to be. i also want to share because there have been some lasting impacts that are helpful to know when we’re hanging out.
it started in fall 2013 with debilitating panic attacks almost everyday. these led to me missing a great deal of work, which led to increasing depression, which cycled until i admitted to myself i was slipping and needed more help than therapy would provide. i wanted a day treatment program so i could still live at home, and healthnet guided me to a partial hospitalization program (PHP) at the alta bates herrick campus in berkeley. i remember scheduling my intake appointment before i had even talked to rhys about the depth of what was going on. obviously he knew there was a problem, but i don’t think he knew what could be done about it any more than i did. on tuesday, november 19, 2013 i began an official leave of absence from my job and started what i usually refer to as “program”.
my days at herrick were interesting. the group ranged anywhere from seven to fifteen, depending on how many people were losing their minds on the outside, i guess. their program has one group of patients and a variety of professionals who cycle through to provide treatment. there’s cognitive behavioral therapy (CBT); dialectical behavioral therapy (DBT); education about coping skills, harm reduction, and addiction/co- dependency; a daily process group for patients to share and support each other; and
a variety of recreational therapies, such as drama, art, occupational, and music. patients also get a psychiatrist that sees them at least once a week, and a case manager who does the same. crazy camp ran monday through friday, 9am – 3pm, and included a $7.50 voucher for lunch in the cafeteria, which was actually pretty good. my psychiatrist and case manager were nice enough guys who seemed to like me, get my humor, and genuinely wanted to see me get better. unfortunately, despite all that the program was teaching me- self-care, kind self-talk, relaxation exercises and new coping techniques- my depression was worsening and no one seemed to be able to help me.
in february, i started to worry i had been misdiagnosed, and that what was going on inside was not chronic depression or generalized anxiety. finally, i broke down sobbing one day after program, telling my doctor and my caseworker i was afraid i had bipolar II disorder. they said they had been moving toward the same conclusion and agreed that was the case. this seemingly dramatic change in diagnosis sent me over the edge, and i was hospitalized for 72 hours.
unfortunately, the new approach did not result in more fruitful efforts where my
treatment was concerned, and things continued to spiral. i was hospitalized again in may after presenting myself for help, and for the third and final time in june or july (can’t quite remember, which we’ll get to shortly), after i was put on an involuntary hold due to concerns i was going to hurt myself. i am not going to get deeply into what hospitalizations are like, or what my exact thoughts and plans were, but i had a clear plan of action and spent a tremendous amount of time between february and november of 2014 begging my family to give me permission to die. the psychiatric ward at herrick saved my life, so it is great. it is boring, but it is safe, quiet, comfortable, and the staff openly care about you getting better.
in may, after trying more drugs than i can name, and refusing a fair number of others due to common side effects, my doctor was left with very few options. i had been in a six-week program for over seven months. i had seen dozens of patients come and go, only to be left behind. i was there so long that i saw a woman start, leave and come back for a “tune up” six months later. no other person had been in program for even a third of the time i was there, and i was feeling irretrievably broken. my doctor had me meet with the medical director for the unit several times over the course of a month and a half, and that didn’t get me anywhere, either. finally, people started talking about ECT, aka electroconvulsive therapy, aka “shock therapy”- all fun, really, so take your pick.
perhaps you are as intimidated by the name as i was, because i replied with a pretty firm no. however, i didn’t want to appear stubborn and as though i just didn’t WANT to get better (which came up at one point), so i started researching other options. there is a new technology called TMS, or transcranial magnetic stimulation, which is an easily administered treatment involving magnetic pulses and the brain. you do have to go five days a week, an hour a day, for 4-6 weeks, but it's also noninvasive and can help you want to live, so it evens out. unfortunately, i was not a good candidate due to the severity of my symptoms, and even the TMS doc recommended ECT. shortly after that consult was my final hospitalization, and it was then that i relented and agreed to begin treatment.
the main things to know about ECT are how it happens and the side effects. luckily we’ve come a long way since nurse ratched, and now they put you to sleep, which is usually the part most people are freaked out about. i certainly appreciated being knocked out, but it thoroughly sucked getting stabbed for an IV three times a week. the way ECT works is by causing you to have a seizure, which, for reasons science honestly does not understand, alters your brain chemistry in a way that can impact mood and suicidal thinking. it’s a pretty mysterious process, made even more so by the fact that it can be used to treat both mania (extreme highs) AND depression. although it is an outpatient procedure, because you’re under anesthesia, you cannot take yourself to and from the hospital. you also cannot take a taxi because you have to have someone present to care for you for at least four hours post-discharge. because it is a seizure, you legally cannot drive for 48 hours after treatment. because you have a treatment three days a week, you are always within 48 hours of having had a seizure and are not able to drive at all. because you cannot drive at all and you
need intensive care at home three days a week, your mom moves in with you and your husband, putting her life on complete hold. at least that’s what happened here. on august 10, 2014, my mom moved into my house, and on august 11, i started getting zapped.
one of the most significant side effects of ECT is memory loss, both short and long- term, in varying degrees. for me, it’s been frustratingly extensive, but i’ll never, ever forget the date i started ECT. robin williams killed himself the same day i started a treatment people were desperately hoping would resolve my will to end my own life, and all i could think is “you lucky son of a bitch”. obviously we’re never able to see ourselves from the outside, but people in my circle have described me as completely lifeless during this phase of my depression. i know i felt hollow and my voice was often completely monotone, but i also did very little talking. there wasn’t much left to say. i was done. i guess in some senses it’s good that i can’t remember just about anything from this time period.
the bummer, however, is that i can’t remember just about anything from this time period, or even earlier. most of 2014 is a messy blur with flashes of memory, usually out of context and with foggy details. i don’t remember doing comedy at all, even though fun times with friends was in sketchfest and we apparently did really well. it means i don’t remember my 30th birthday, where my family took me out to dinner at chez panisse and we apparently got a tour of the kitchen. it means i don’t remember to going to an a’s game and sitting in a luxury box with rhys and his hockey guys, where i apparently had a really good time. a luxury box at an a’s game! chez panisse! a literal dream come true- sketchfest!! and as far as i know, these things never happened. it seems to be almost daily that a new activity i participated in but don’t remember comes up. at this point the joke in my family is “if you say so!”. the memory thing is why i find it crucial for you, friends and family, to please know that when i can’t remember something we did or talked about together, or if i need help being reintroduced to someone, it’s not personal. please don’t be surprised if i need directions to get somewhere i’ve been before, even i have been there many times. i also find i am repeating things back a lot right now in order to process and hopefully retain them, and i know that’s annoying, so i ask you to please bear with me.
for all of the pomp and circumstance leading up to ECT, and all of the insane crap that comes with it (you’ve never had such a ridiculous headache in your life), it also proved ineffective for me (i am in the <3% of patients for whom that is the case). i underwent the maximum number of treatments allowed, finishing on october 23. two weeks before that, i started searching for programs again, willing to go wherever and do whatever it was going to take, including residential. if my family was going to insist that i stick around, i needed to find a way to do it honestly. mercifully, it did not take too long and i didn’t have to leave home.
my wonderful therapist referred me to a program in oakland called la cheim (oy, i know). mom and i checked it out the day before my last ECT treatment, and six days later i was in. the core content at la cheim was similar to herrick- CBT, DBT, coping skills, art therapy (which now included writing!), and process groups- but that was pretty much the only similarity. the most significant difference is that at la cheim, pretty much every group ended up functioning as a process group; we were continually encouraged to share concerns, questions, or examples from our daily lives, regardless of how much content the group leader had intended to get through. we drove the content, which means we progressed much more quickly and deeply. at herrick, the packet was sacred. funny how it all comes back to good teaching vs. bad teaching. because of all of the incredible work i was doing daily at la cheim, i had a game changing breakthrough in therapy on november 12. what does a breakthrough look like? during process group that morning, i had been sobbing in frustration and hopelessness over being a broken person. in therapy that afternoon i hit gold, came home and processed my revelation over the phone with my mom. on november 13, i woke up before the alarm, showered, did my hair and make up, and felt like i was genuinely seeing, hearing, and breathing again for the first time in over a year.
the last 16 months have been so surreal dali’s jealous, but i am sincerely pleased to report that i’ve only been climbing since november 13. it’s a slow, treacherous ascent, but i know i can make it because i have such a ridiculous support network (personal shout outs to rhys, my mom, and kelly for being my ride or dies through absolute shit). i’m no longer teaching, and don’t believe i’ll ever return, but you know what they say about nevers. i’m crawling back into comedy thanks to my fun times friends, and talk about a muscle that’s out of shape... we’ll see if i ever remember how to write a joke again, but for now at least, you can catch me at the milk bar, 1840 haight street, san francisco at 8pm the 3rd and 4th mondays of every month. i’ll be the one laughing the loudest.
yesterday, my mom and i were on the phone talking about how i am doing, and she made a reference to me being "mentally ill." before i could even process what i was saying, i snapped at her. the phrase knocked the wind out of me, and as my chest constricted, my brain was taunting me:
"you're not mentally ill."
"well, yes, you are."
"noooo, you're NOT."
"but you have a MENTAL ILLNESS!" "oh my god... i'm mentally ill... fuck."
i owe my mom an apology, because she's right. i am mentally ill. when you break it down to the actual meaning of the words, it is an entirely neutral phrase that applies to me because i have a chemical imbalance that requires daily medication and will for the rest of my life. that is not a bad thing or a good thing; it is just a thing. the meanings of words, however, are much more than oxford says, and the magic of connotation is where i got tangled up.
it's really fun to think of yourself as an open-minded, free-love, no-judgments person until something pops up to expose you to a prejudice you didn't even know you had. bingo, baby. and you have to admit it's pretty funny that the condition i have, which impacts my sense of self-worth, is what i'm prejudiced against. it's like a betty crocker box mix for self-loathing. mentally ill isn't safe. mentally ill isn't okay. mentally ill isn't in control. mentally ill is clandestine. mentally ill is scary. mentally ill is homeless.
mentally ill is unsafe to those around you. mentally ill may as well be a death sentence. and i put all of that onto my mom because of the biological reaction i have to those words.
the real thing of it is i'm not upset with myself for having that prejudice because i am not alone in it. it isn't something i was born thinking; it is the product of 30 years of accumulated evidence on how the society i live in treats those words. it is the same reason i broke down when i was diagnosed as bipolar- the information stored in my database tells me that those things are bad. they cause people to kill strangers, coworkers, friends, and even family. they mean you are constantly cycling in-and-out of control and require intensive medical attention to remain anywhere near stable. they mean you are worthless because therapy is only for people who are weak. they mean you'll never have a "normal" life. i learned this stuff from my environment. i learned it from discussions with family, friends, and acquaintances. i learned it from the media, especially via coverage of situations involving mentally ill perpetrators. i learned it from literature and film. i learned it from social norms of what is and isn't
taboo. last night it settled on me that if i learned this prejudice, it means a significant percentage of the population probably learned what i did, too.
my therapist is not so keen on me posting about my illness here because she's worried when i apply for jobs people will search for me, see what i've written and be less apt to hire me. i bet anyone who would make that choice based on my illness wouldn't say they're prejudiced, because they have a fair point: would you hire someone who may need a modified schedule, working conditions, or other accommodations if you knew ahead of time those issues existed? you might if they had a physical health condition, because it's easier for people with physical limitations to have others literally witness their discrimination, and that would look real bad. if you're like i was, the fact that you'd skip someone mentally ill but not someone physically ill (even if we knew their illness was a limitation) should be a red flag. i shouldn't feel afraid of possibly needing accommodations when i go back to work, but i am because before i landed here, there's a decent chance i may not have hired me. oops!
i'm not really one for just casually advertising the fact that i have a mental illness in workplace or anonymous social situations, so i'm not going to go 180 on y'all and wear a BIPOLAR AND PROUD pin everywhere (totes did just order one from etsy, though). i'm just happy that i got the chance to bring this to light in myself so i can work on making it vamoose. turns out that just like the equality i've pushed and worked so hard to get for others, it's not about being able to shout about yourself from the rooftops; it's about being able to go to sleep at night without worrying how you'll ever succeed in a society that sees you as defective. mental illness doesn't have to be all up in your face; i'm just saying that if people can speak publicly and unabashedly about an illness that impacts digestive functioning (big ups to crohn's allies), it'd be cool for me to not feel scared people might find out sometimes i have good days and sometimes i have bad days. cuz i'm, like, totally ill, yo.