end of the rope

I am underwater, senses dulled and utterly alone. I am aware of nothing but the bitter bite of cold that sinks into the bone and fills my lungs as I try to draw breath and suddenly all is light and beauty. And then I am awake, glad to feel Geoff’s presence by my side and feel the heat emanating from his sleeping form. I feel the weight of my little cat, posed perfectly between us, and for a second my heart is full of love for my husband and our sweet pet but finally the bad feelings rush through my blood and there is nothing but the sting of grief and pain.

I am committed to at least one more cycle with Femara, understanding that it’s a foolhardy choice. I cannot go on indefinitely, stumbling through the inevitable darkness it brings and keeping my head held high in defiance of Fate. As much as I long to hold my own child, I will not kill myself trying when I have Geoff’s love to honor and cherish. I feel his hope slipping as well — I think he’s lost as much faith in my body as I have. He’s still here, at least, although he could easily leave for a woman, perhaps much younger, with ovaries of gold and platinum and a womb that is perhaps not twisted with theorized destructive scar tissue. I am stymied as to why he stays with a sick woman when he has so much to offer a woman more deserving, someone who, perhaps, is not a professional mental patient and has far more to contribute to the grand love affair of which he is capable.

I walk around feeling like there is a knife piercing my heart.

I just returned from my therapy, where I did not utter a word about my disdain for the House Intelligence Committee, the firing of Rex Tillerson, the appointing a torturer to run the CIA. I spoke only of my anger at the things that have happened to me, how deep it cuts, how much I am struggling with it and how cold my loved ones have become. Of how the mornings are okay, but as the day slips by I sink deeper into hopelessness and despair. And finally, about how bitterness is eroding the good parts of me, leaving me as cold as those I condemn.

There is smoke in the air and I think, something is burning but of course it is not, it is just what therapists used to refer to as an overly active imagination but is now diagnosed as psychosis. I turn my attentions elsewhere and the panic recedes.

******

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bad night

I had a really bad night last night. At bedtime, I wasn’t sleepy at all, which was bizarre because my medication usually knocks me out for a couple of hours. I found myself tossing and turning next to Geoff’s sleeping form. All of the sudden, I was lost in thought. I enjoy being lost in thought, but usually avoid allowing myself that luxury nowadays because I have so many horrible things going through my brain at any given time, it’s just too dangerous emotionally. I usually distract myself by playing on my phone or computer instead.

But suddenly, I was daydreaming about having a baby. Such vivid thoughts, I could feel her in my arms and it was Molly and she was alive and healthy, my parents there cooing at her, the in-laws, too; I felt rhapsodic and so happy and at peace. It was the way things were supposed to be and it was perfect.

Except I had the nagging thought that something was wrong. Bitter Kathleen does not indulge in fantasies of success. I often reflect on how miserable our most-likely childfree life will be, feeling all the fear and pain and rage until I have to take my benzos and lay down on the couch. But I felt this delicious relief daydreaming of my happy ending, a euphoria I could feel deep down in my bones. All this, while knowing for certain that my first torturous cycle of letrozole after miscarriage has failed, and that I may not get anymore chances.

Suddenly I broke into a sweat and started shivering. I had to pee every five minutes. It was getting later and later, Geoff was blissfully asleep and snoring, and I closed my eyes. In my imagination, my tiny bedroom became a ballroom, with faceless and formally attired people waltzed and spun across the dance floor. And I opened my eyes and they were outside my head, my bedroom was transformed and the faceless people whirling across tbe floor, and I knew I must have missed a dose of my antipsychotic and I didn’t know how. I thought I’d lay there until my little cat came in to wake Geoff for his middle-of-the-night meal (don’t ask…Wendall is my cat, spends all day with me and ignores Geoff — except at 1am, he wants Geoff to feed him and not me). And then I was definitely hearing voices screaming and music blaring and I was scared so I woke up my grumpy husband.

“I don’t know how, but I missed a dose of Geodon and I need to eat something and take another 60 mg,” I told him as calmly as I could. Yogurt and honey appeared, and I took a pill. I planned to take another 20 mg every half hour until I could sleep.

When we woke up this morning, it turned out my 120 mg bedtime dose of Geodon was still in the pillbox. It was a relief knowing that I was right in assuming I had missed a dose. That cold sweat I was experiencing is always the number one indicator that I’m behind on my meds — I’m such an addict, I get withdrawals from Tylenol.

It amazes me how crazy I went so fast after missing a dose. It’s scary as hell that I am so dependant on it, how it’s the one outpost between me and sanity. But it worked out. Just another day in a life with schizoaffective disorder. And all the terror was worth it, because I had such a beautiful daydream before things came off the rails…

Molly. I keep on living because of you. But it might kill me in the end.

******

I fucking hate people. Like, I really fucking hate them. My therapist constantly tells me I need more social support but it’s not like I haven’t tried. I don’t think normal people give a rat’s ass about infertility and recurrent pregnancy loss and the resultant PTSD. It doesn’t seem like a big deal to them, they don’t want to hear it. They don’t want to know what it’s like living with schizoaffective disorder. They just want me to act like normal Kathleen.

Am I too self-obsessed, self-indulgent? Is it selfish of me to want to have my friends be interested in what my life is like? Are there more caring people out there that just pass me by? Honestly. I am not suicidal, but in these three years of he’ll thoughts have definitely flirted through my mind. I honestly think some of the remarks I’ve heard from people that supposedly care about me could make a less secure person take the plunge, twist the knife in. And it’s bullshit.

When you’re as sick as I am, everything is a life or death situation.

******

I feel a tremendous compulsion to understand why people don’t seem to give a shit.

dropping

Mood swings. I feel helpless and hopeless. I fantasize about a doctor showing up while I lie prone on the couch. “Here’s something that will make you feel better,” she says to me. She administers a shot, and the toxic feelings dissipate within seconds. She tells me I won’t have to take three different handfuls of five different pills a day. Just one shot a day, and I’ll feel normal again.

…and the pharmacy just called and they will only cover two 60mg Geodon pills a day. I take four a day. I’m not panicking yet, I took my chill pill. But wtf?

If only there were an easy answer. I need my fucking medication, especially my Geodon. Why do they make it so hard to be a full time mental patient? It’s like they want me to suffer, and suffer I have.

I think I ovulated after three days of creamy sperm-hostile CM. So, in other words, I don’t have a prayer this cycle. I want to drown my sorrows in bourbon, but of course, I won’t. Next cycle will be better, I tell myself, the same thing I always tell myself. It’s getting old. Scruffy snorts derisively and saunters off. He does this sometimes. I never know when he’ll be back. I’ll mope my way through the tww alone.

The hopelessness is familiar by now. I’m on a fool’s mission. I spent my entire therapy session talking about politics, what a waste of $150 and a 50 minute hour. I can’t help myself — I get all worked up. And I neglect to mention that the world is sending signals again (ideas of reference), that I’ve been seeing hooded figures in the shadows. Not the greatest time to be threatening to take away my Geodon (my antipsychotic). I feel like there’s an alligator infested moat between me and society. And none of these doctors can help me.

******

Why do I only have two modes — can barely move under the crushing weight of depression mode, and freaking the fuck out mode? Yes, yes, I’m schizoaffective, bipolar type, but I don’t have major mood episodes anymore requiring hospitalization. And maybe I’m creating a false history with distorted thinking, maybe it is just the Femara.

Infertility is the cruelest thing when you’re brain is mucked up. You thought you were doing okay? Well, now your ovaries are fucked as well. And normal people are so scared off by the immensity of my problems: my psychosis, my infertility and recurrent losses, my moodiness, the panic attacks and neurotic worrying. Just relax, they tell me. They don’t understand that I can’t.

Once, I flunked out of this meditation class for people with severe anxiety — it seemed like a good idea to take it at the time. I was unable to sit still and I would start hyperventilating, and I was scared I was disrupting the class, so I’d have to go sit in the hall. All the men would crowd around me afterwards (I was young and pretty then), giving me burned CDs and audio cassettes of guided meditations that they swore would help me. They didn’t. The leader of the group was kind to me and lent me books, but I just couldn’t quiet my mind. I stopped going, humiliated.

So, telling me to relax is not real effective, especially if I don’t trust you. Well, tbh, Geoff is often unable to calm me either.

I’ve been to group therapy during times of depression. I can barely talk. Listening to the other members’ tragedies just brings me down more. I try and try, and I know I irk everyone because I speak so slowly, pause for too long before answering a question.

And this feeling that I am seriously flawed in every possible way won’t leave me today.

******

What happened to make you like this?

And this is where I am. Fat face, unwashed hair. I’m wearing my husband’s Barfly t-shirt and a mohair sweater I bought at The Garment District when I still lived in Boston…I think I was eighteen.

It amazes me that I don’t look at pictures of myself and see the damage. But inside, I am bitter and hard, and if you trigger me I don’t forgive easily.

monotony

Same thing every damn day. Me, on the couch snuggling with my little cat; husband off trying to get in an hour and a half of the social contact I make so difficult (I am a pathological introvert who is not doing well, and he is healthy and gregarious but loyal to a fault and doesn’t like to leave me when I’m not feeling good). I am in a foul mood, depressed and irritable and it just won’t lift. I suspect it’s the Femara wreaking havoc on my hormones, although not actually producing ovulation — but my usually-clear complexion is covered in acne, I found a hair on my chin the other day, and my uterus has been tingling as it does when I’m expecting my period or about to miscarry. My cycle is fucked, which may be contributing to my grouchiness; or, I could be reacting badly to the bump in Paxil. Or, I could be embarking on some sort of mixed mood episode, though my symptoms aren’t florid enough for me to alert my care providers.

I mean, okay, I had my usual CM pattern that coincided with a positive OPK but no sustained temp rise. Will I have another LH surge, or do I have a follicle that for some reason didn’t release the egg so I’ll get a cyst? Was my CD 1 really CD 1?

I’m tired of being always beholden to my moods and ovaries. The voices chatter in the background, and the content of what they tell me reflect my mood state. They laugh at my infertility, suggest I hurt myself. If you hear voices like I do, the number one rule to living with them is to not listen to what they say to you (number two rule is to not talk back to them in public). Easier said than done, but medicated me can keep them in the background and, say, not go running of to a new city without telling anyone where I’m going, not cut stars and hearts into my skin, not start shit with the cops. I’ve been living with auditory hallucinations all my life and they break through my antipsychotic (Geodon). I can’t imagine a life without them, but I’ve adapted to them pretty thoroughly.

I sent Geoff off into the world so I could have some alone time, but now I’m eager for him to return. I’ve taken my temazepam and it’s kicked in much harder than usual and I have those delicious chills it gives me after about a half an hour after swallowing the pill. I want to curl up in his arms and feel the heat of his heart.

Even when I feel stabby and toxic, I still would rather not be alone.

liberal paranoia + o day

Sigh. Suggestions about re-opening mental institutions and segregating the mentally ill are bullshit. Having a great deal of “liberal paranoia” (my therapist says this is different from my regular paranoia and not indicative of psychosis as there is historical precedent), I fear they’ll round up all us psychotics, and I will be living in squalor (because really, how much money will they really be willing to pour into these as of now still fantastical long term care facilities? ), apart from my husband that takes care of me so well? Yes, I recognize that I am catastrophizing, as I am wont to do, and this is just my obsessive worrying at play, but for reals this discourse has got to stop.

I live comfortably in my community. I receive disability benefits from Social Security and my income after I pay my Medicare premiums is $785 a month. Who the fuck can live on $785 a month? My husband, fortunately, is a hard worker and we get by successfully, though money is tight. I have access to care; I have a psychiatrist for medication management and a great therapist. My disorder is in partial remission, and you wouldn’t guess that I had schizoaffective disorder if you met me, though I’m sure I’d be anxious.

I live a fairly okay community supported life. I have never been a danger to others, I would never find myself in the possession of a firearm, and my days of self-harm are decades pasts.

It is a fact that a diagnosis of mental illness is not predictive of future violence. It is a fact that past violent behavior does tend to predict future violent behavior.

Why am I even writing this? I already fret excessively that we’ll go to war with North Korea (and now I’m pretty wary of Russia), and they’ll put us Korean Americans in internment camps the way they did to Japanese Americans during World War II.

Geoff reassures me. And I’m pretty sure my mental health providers would go to bat for me if I were faced with segregation.

Liberal paranoia from the girl with real paranoia. It’s been a rough couple months. Hopefully, my sense of security will return soon.

******

Two more days of high temps, and I’ll have confirmed ovulation on a bright and early CD 14. I hate this part of temping. My CM pattern is off, usually so reliable that I’ve conceived twice on tracking CM alone. On letrozole, my boobs have always been sore at ovulation, and they aren’t yet so it gives me pause. I hate how any type of medication I take affects me differently every time. And my scant period last month has me fretting about my lining, ugh. Scruffy has cleaned himself up and is prancing around, eliciting feelings of apprehension as I watch him dance and twirl. The bfn I’m sure to get at 12dpo will sting, like, a lot. I wish I could get rid of Scruffy. Set him free downtown by the artesian well, where the junkies hang.

I’m fucking sick of always hoping. I just want to let all this go.

spiraling

I am floating. My daily tranquilizer gives me about a 45 minute reprieve from the horrible moodiness from the letrozole I finished days ago. I am reminded of the days long ago when my mood swings were not controlled by medication. My last bout with Femara left me flat out depressed throughout my cycle; this go around is more reminiscent of uncontrolled rapid cycling bipolar.

I try to focus on positive things. I am, in general though certainly not at the moment, stable. Letrozole does not worsen my hallucinations or make me paranoid or anxious. I may at the moment be a little unsteady, but hopefully as the drug leaves my system I will feel comfortable in my skin again. Geoff is looking after me, and hasn’t complained about the piles of clothing I’ve scattered throughout my apartment, as I’m too drained and distracted to be much of a housekeeper. He cooks me meals as I sit on the couch fighting tears.

I crawl into bed every night exhausted, but not sleepy. The days are ridiculously long, and I grow weary of being awake. And I have been staring down childlessness for so long now…

I think I’ve started the process of giving up. I don’t want to, but in my heart it’s happening anyway. Geoff has brought up fostering. I’m not sure I’ll ever feel comfortable around other people’s kids again, and I’m pretty sure no one in their right mind would give charge of a child to a woman with schizoaffective. Yesterday, I found an old picture of Geoff, sitting in our tiny former apartment and smiling. We were so happy just to have each other — I wonder if I could ever get back to a place where just the two of us was enough for me. Maybe I’m too greedy in wanting more.

And the clock ticks, marking another moment of my declining fertility as I move inexorably towards middle age…

*****

I told my therapist I wanted to experience a full term pregnancy. She told me the last few months gestation was really uncomfortable and I shouldn’t romanticize it. I choked on bile. Because I want it anyway, I’d do anything to carry beyond nine weeks again, and I’m actually not being unrealistic. I’ve suffered so much in my attempts to bring a child into this world, surely I can handle the physical drawbacks of biology in the third tri. I feel as a mother of two bio kids, she’s speaking from a platform of privilege. And it kind of made me want to die. We talked about why this made me feel stabby. And she does try to understand, and she has been my biggest supporter. But I think she’s giving up on me as well…Geoff too, and probably everyone else as well…

******

Ewcm, super negative opk. CD 12. My predictable body is rebelling and I feel despair. Please let my next period be more normal.

******

I can contract for safety, sure.

For all my long ago fears of being forever institutionalized, the mental hospital does not, actually, want me at all. Maybe if I had a lot of money or at least decent insurance, doctors would suggest a long rest would do me well, but 1-South, an acute care facility at the local hospital here has one goal: to send you home and into the care of perhaps slightly less overbooked outpatient care providers. How many times have I laid in the Crisis Clinic twisting my wrists and ankles against four-point restraints, floridly psychotic and screaming that I wanted to die, only to be calmed with some shot (I think they use Haldol and Ativan), engaged in pleasantries with the nurses until I could nod my head earnestly and say, yes, I feel better, yes, I can contract for safety, and there I go, out the door and into a taxi and freedom…? No, you have to be really scary if they’re going to admit you, and you have to even fight for your right to a bed. Or, maybe your therapist or the CDMHP says you have to go in and calls and pulls strings and that sacred bed is granted easily, fast enough that you don’t change your mind out of sheer boredom from the interminable ER wait time but as soon as you show the tiniest improvement on meds, you are sent home clutching a handful of prescriptions, sayonara, you’ll be just fine. I’ve seen patients beg to stay in (perhaps they’re too scared to leave, or they have nowhere else to be, or they enjoy having their obligations suspended, I’ve seen it all…nope. Unless you are super sick, then you are transferred to Western State and nobody begs to stay there.

All this to say, I’m safe, I’m quite sure I’m safe, but I spent all afternoon thinking about dying. Yesterday I asked all of you, what is the evolutionary purpose of living decades longer than your own fertility? I know nowadays women live longer, and all sorts of scientific discoveries have extended the human lifespan — but, after a woman’s useless for reproduction what is her purpose for living?

I’m wording it all wrong. I’m not actually thinking of women everywhere, I’m thinking only of myself because I feel like my potential usefulness to the human race has long since faded. My own mother seems pleased that my silly tries at having offspring will soon be a thing of the past (my age allows her the privilege of assumption, I sure as fuck can’t talk to her about it). I cannot produce a new living human and my very abbreviated genetic line will end here and no one else seems to care but me.

And what now? Travel, everyone tells me, brushing aside my agoraphobic tendencies and lack of a reasonable income. I think of those who are childfree by choice, how their lives are so full of rewarding shit that they don’t have any desire for anything more…I envy their fearlessness as I sit here wondering neurotically if I’ll ever see my husband again or if some tragedy will befall him and I’ll have to become a solo drifter, oh, this fear haunts me all day when he’s not here.

I know this is letrozole messing with my mind but I cannot stop thinking in a passively suicidal manner. My medical traumas haunt me and while I used to be fearless, these days a flu shot brings tears to my eyes. The actual pain is not so much the problem; it just hurts my feelings that the nurse wants to inflict it on me. So suicide is not an option, but I wish fervently to be given a drug to help me sleep and never wake up again and also for it to happen unexpectedly so I am not afraid because crazy me is also fearful of fear.

I love anesthesia. Just saying. If I could spend the rest of my life under anesthetized, well, that seems grand. I’ve attempted to inflict this on myself in the past but coke, booze, opioids, whatever (and I will not mess with needles so heroin is out too)….those aren’t strong enough at all. Nothing short of propofol will do (say what you will about Michael Jackson, he was a man who was not fucking around when he wanted to check out for awhile). I don’t have access to surgical grade anesthesia so the path of addiction holds no appeal.

My mind spun out all afternoon, and now Geoff is home. I would never hurt myself as long as he’s around and breathing but today I cannot stop wondering what I’d look like if I died.

One last thought: if I were to kill myself, and for the hundredth time I won’t, but if I did theoretically, or someone just like me did, would they have to put a warning label on the bottles of Femara that obstetricians in the US apparently give out like candy? Maybe an RE would be a little more judicious, but mine certainly didn’t recommend I at least alert my shrink, although I wrote out all my psychotropics and answered honestly when he asked what I took them for. For that matter, my shrink had never heard of Femara, and just prescribed temazepam to potentially offset the moodiness. My psychiatric obstetrician didn’t flinch, either. Have women with mood disorders ever offed themselves on Femara, has anyone made a connection, has no one else in the world thought for a second, hmmmmm, maybe this is a bad idea?

Is whatever the hell I’m trying to prove with this slim possibility of getting pregnant even worth a day like today?

schizoaffective disorder, part III & recovery

PART THREE

A manic break, like I had in my first year of college, is what separates bipolar I from bipolar II. Bipolar II patients have hypomanic episodes in which one may experience elevated mood symptoms without quite the level of impairment that a full-blown mania imparts. I knew something significant had happened to me, I knew I had lost my fucking mind — possibly tipped off by other students, the school counselor had been after me, but I managed through dumb luck to evade her. I was definitely impaired enough to warrant hospitalization, even involuntary commitment, but by the time the men in white coats came for me I had crashed. A Tylenol overdose is serious, and I had waited three days to inform anyone I had done it, thus damaging my liver and landing me on the transplant list. After three days, I figured that I wasn’t going to die and I had started vomiting. Since our dorm had one community bathroom it seemed I couldn’t go unnoticed for too long, and I called 911.

Depression can distort your thinking, and I was hearing my voices ordering me to kill myself and was convinced my dormmates were plotting to kill me as well. I was absolutely terrifying. I had no toehold in reality; I was fully psychotic with both auditory and visual hallucinations and suffering paranoid delusions, and and my actions made complete sense to me at the time. I felt like I was nothing but a lunatic who would do nothing in life but drain the planet’s resources, and that everyone I loved secretly was hoping I’d die as well. Remember that when you accuse the suicidal or suicide victims of weakness, selfishness, and stupidity — I’ve been called all of the above and more from the moment the ambulances arrived, and I feel that’s it’s fucked up to make judgment on anyone’s character when their illnesses actually set these thought processes in motion.

Moving to Olympia was, in retrospect, a very bad idea. As I was misdiagnosed by my own designs — I was not honest with the stream of mental health professionals that suddenly appeared in my life and they missed out on seeing me at all manic. I never fessed up to my psychotic symptoms because they terrified me and I thought I’d be forever institutionalized. I was beginning to see my psychosis for what it was — an aberration, not part if the “normal” experience my friends were having. It was like putting on those purple glasses.

I wrote a lot about depression when I got to Oly because I was mired in it. I immediately realized my Pamelor was mucking me up even worse, keeping me crazier than I’d been without it and it made me extremely irritable, which was hard to live with due to the problems it caused in my relationships and friendships. Walls were punched, drinking glasses shattered. Antidepressants tend to push bipolar patients into mania and it got pretty scary in my head. I decided the pharmaceutical industry was a scam, discontinued it without telling anyone, and became a nice safe depressive again.

I didn’t know how the health care system in our country worked at all. I didn’t think I could get help without my parents knowing about it, and they were already skeevy about my transfer to The Evergreen State College but didn’t know what else to do with me. I remained depressed and suicidal during my time there, but for whatever reason my psychotic symptoms were manageable again. I did a horrible job making friends, because deep down I knew something was desperately wrong with me and that opened a chasm between me and the rest of the student population at Evergreen. Isolation is a huge problem for all those with mental illness, but it tends to be insurmountable as a psychotic. I sludged through a couple of very dark years before finding a general practioner to prescribe the antidepressant Celexa. And I started to feel better. A lot better.

I returned to the general practitioner a couple months later. I had developed an issue in which I was getting recurrent UTIs with no symptoms, and these would eventually spread to my kidneys, so I was frequently in the ER and then in the hospital. My doctor prescribed a prophylactic dose of the antibiotic Macrobid, and told me to take it every time I had intercourse. Since I was wildly hypersexual at the time, I cheekily asked him what’s the most I can take in a single day? He looked very alarmed.

“Has anyone ever told you that you are bipolar?” he asked with panic in his eyes, desperately scanning the pages in my chart (I’m old enough, this was before they had computers). I laughed hysterically, and he switched my Celexa to Wellbutrin. Again, antidepressants will push a bipolar person into mania, and I knew I was crazy again but he eventually said it was just the meds and it would go away with the switch in antidepressants.

And then I got a job as a phone sex operator at a fetish line…

Suddenly, I was having the time of my life. I got to talk to people that were into way crazier shit than I ever imagined. I covered the overnight shift, and stopped sleeping again. I was incredibly successful, as I am with most things I try (save for having a baby, but I’m putting that on the back burner right now). I went off my Wellbutrin and onto Paxil and my mood went from elevated to euphoric to completely grandiose, and in the business of being a phone dominatrix these qualities will serve you well. I somehow got promoted to manager, but my phone calls were racking in so much money for the company I still mostly spent most of my time on calls. When I wasn’t on calls, I was shopping, buying thousands of dollars worth of fetish wear and ridiculous things, like a $75 keychain.

One day, I was speaking to a regular client of mine who was a psychiatrist. Since I was so grandiose and an ardent feminist, I usually refused calls that cast me in a submissive role, but this poor dude was tormented. I’d walk him through horribly sadistic and misogynistic fantasies, and afterwards he would cry and apologize over and over for hurting me. One day, he started asking me a lot of questions and told me he suspected I was schizophrenic or bipolar because I answered very honestly (I prided myself on being completely honest with my clients). He begged me to talk to a doctor, and then apologized even more for traumatizing me. And just then it hit me that I needed serious help.

I might add, becoming a phone sex operator and subsequently a fetish model, was completely out of character for me, a former honor student. And it got worse. I started abusing drugs and alcohol, favoring the euphoria of cocaine and oxycontin, which I would crush up and snort (you can’t do that any more, they’ve added some sort of coagulent so it won’t go up your nose). I met a guy I thought was wonderful, a bipolar man who moved me out of my phone sex job (I actually had been living in my office) and provided all sorts of pharmaceutical enjoyment. He was most likely still married, despite claiming he was divorced. Since I mistook being manic and high for love, I decided I needed to get psychiatric help, since I didn’t want to fuck our relationship up like I usually did with boys. I’d also quit my job in a very dramatic fashion, and was unemployed. I was twenty-two years old.

The drinking and drugging made me very anxious, and very psychotic. I began having daily panic attacks, and couldn’t distinguish my hallucinations from reality anymore. I began having ideas of reference, which continue to this day — these are delusions in which you think every little thing in the universe pertains to you. It’s hard to describe. I go outside, and see a leaf twitch. This appears to signal a man to come around the corner, watching me. His appearance causes a car to drive by slowly and when it passes the driver signals a bush to shake in the wind, and in response a woman exits the building across the street. The whole experience is reminiscent of paranoia, and often will turn into full-fledged paranoid delusions.

The police become a regular fixture in my life. I am often picked up on the street and dragged to the Crisis Clinic in handcuffs, or else I am screaming in my apartment and the neighbors call the police and off I go on another ambulance, or, they manage to deescalate me and life goes on. The police here are well trained in dealing with the mentally ill, and I retain a pristine criminal record and am never brought to jail. Being a small Asian girl with a middle class upbringing, I am lucky in this regard.

My mom starts visiting regularly. I frighten her, one day finding myself unable to stop walking in circles for hours, the next by being unable to move and listening to Leonard Cohen’s Songs from a Room on repeat while screaming that I wanted to die — both these episodes required a visit from the CDMHP (County Designated Mental Health Provider, a woman in charge of evaluating whether or not a person needs to be involuntarily committed). I spend time in the hospital, while my mom sits hopelessly alone in my apartment, as I’m only allowed visitors for an hour a day. She bonds with my cat and ate at Taco Bell (she didn’t know where else to eat as the city was unfamiliar to her).

I am diagnosed with bipolar disorder and given meds. I have freaky reactions to a lot of them, and my new cocktail of pills messes me up even further. I try everything. I admit to my doctor that I hear voices, all the while taking illegal drugs. By now, my boyfriend has left me and I’ve become terrified to leave my house. I stop using coke and oxy, and start taking ridiculous amounts of benzodiazepines, obtaining them dishonestly through my new provider at the low income clinic and buying them on the streets. I continue drinking. Eventually, I am granted disability through Social Security for a diagnosis of bipolar I. The disability determination psychiatrist says schizophrenia would have to be ruled out. I often awaken in four point restraints in the ER, I am hospitalized a couple times.

And then I am prescribed the antipsychotic Geodon…

RECOVERY

Despite the major addictions to booze and pills, I start feeling a tiny bit better. The Geodon works fast. I had tried Zyprexa (it made me so confused my boyfriend caught me trying to pee in the trashcan — I really thought it was the toilet), Risperdal and Seroquel both turned me into a zombie and I would fall asleep anywhere — my boyfriend was continually carrying me home from various locales, after being unable to wake me. Within hours of taking my first dose of Geodon I felt sharper, unlike the other pills that seemed to work by dulling all my senses. The psychosis didn’t go away, but it was manageable. My moods stopped swinging, but I didn’t become super depressed. I attempt to regulate my alcohol and tranquilizer habits, but am unsuccessful. I enter a partial hospitalization program at the hospital across the street. I am still agoraphobic, but the hospital is so close to my apartment I am able to drag myself there. My Geodon dosage is increased, and increased again. I make a couple of friends.

Eventually, I am busted and it comes out that I have a dual diagnosis (this means you have both a mental illness and a substance abuse problem). I am sent to outpatient chemical dependency program, where I meet even more friends. Against all odds, I get clean and sober, throwing myself into twelve step work. My best friends from treatment are dead now, one from overdose on painkillers and one from COPD as a result of his smoking. I grieve, I meet new friends. There is a lot of grieving because addiction kills. This is still a reality in my life today. But back the…I was so so young.

My diagnosis is now in question as my care providers struggle with sorting out substance-induced symptoms from my mental illness. I now have Medicare and see my provider at the outpatient psychiatry clinic at the hospital I know so well. My new therapist (the old one was batshit nuts and would just show up at my house to meddle with my medications and bum precious cigarettes, which I could barely afford anyway) is one of the coordinators of the partial hospitalization program and sees primarily patients with diagnosed mental illness, especially psychosis. Initially, I am terrified of her but I learn to talk about things I’d never talked about before. I still experience constant auditory hallucinations, the occasional visual hallucinations and have those ideas of reference, and I’ve accepted that I always will. I’ve actually had them so long, I can’t imagine living without them. I believe that my drug use (especially stimulants) exacerbated my psychosis but there’s no fixing that now; what’s done is done. I also believe that drugs increased my panic attacks — to this day, I still experience them daily. My diagnosis now is schizoaffective, meaning I am bipolar and schizophrenic, but my schizophrenic symptoms are mild compared to other schizophrenics that I have met in recovery. Medication and regular talk therapy have allowed me to retain a good deal of functionality. I am still on disability, but have not had a major mood episode since starting Geodon until recently, when I realized losing four babies had sunk me into depression.

This probably all seems looney tunes to you guys. Sometimes, I cannot believe this is my life — I fucking am psychotic? Wtf? Sometimes I feel more comfortable conversing with the guy on the corner screaming that Mr. Rainier is going to blow up on Wednesday than the average college educated middle class lady who likes the same bands as me and shares my interests in literature and film. I definitely live life differently than I ever expected to, and there is a lot of grief in contemplating what this illness has robbed me of — a satisfying career, solid lifetime friendships, and now a family of my own. But I’m not alone. I have Geoff, and although I may occasionally accuse him of wanting to kill me, he good-naturedly takes care of me on the bad days and is here to celebrate the good ones. Life with a psychotic disorder is not the end of the world. My life is hard, but it certainly is worth living.

Today, I have to take care of myself. I deal with my symptoms by carefully structuring my day. For example, I have to go to bed relatively early at the same time every night. It doesn’t matter If I wake during the night and can’t go back to sleep, it seems, but I need to be able to fall asleep at a consistent time — I don’t know why this is, but it works for me. If I can’t sleep, I contact my prescriber to tweak my meds and start taking long walks in the daytime to wear myself out a little — regular sleep is vital to controlling my moods. Lack of sleep is both a cause and an effect of mania, and I have to be meticulous about my sleep schedule, no exceptions. I can’t travel too many time zones because it takes me about a month to get over jetlag.

I also need to take my medications at the same time each day. Geodon has a short half life, and you need to eat with it so it can absorb. Therefore, I must eat three meals a day at the same time every day or I start getting fuzzy around the edges. In addition, I notice that if I’m not exercising enough (and I’m not talking about anything extreme like CrossFit or anything, just light exercise like walking), my mood plummets.

My rigorous time scheduling can be awful inconvenient, but is essential to my wellbeing. In addition, I attend weekly psychotherapy sessions and track my moods carefully. I’m willing to do all these things in order to stay on planet Earth, even though I must sacrifice spontaneity. My friends don’t really understand when I can’t stay out later to finish watching a movie or something, but it’s something I have to live with.

I realize by posting this, I’m opening myself up to a lot of judgment from friends and strangers alike. I’m willing to take that risk because the mentally ill are getting a pretty bad rap in the press today, and I hope to be one voice out of many. So my backstory is a little seedy. I was young and sick. Despite living with a chronic illness that is really no different than any other chronic illness — well, I’m really just a normal girl that wants what everybody else wants. I live a somewhat dull life, I am clean and sober, I have never posed a threat to others, and I take medication like a diabetic takes insulin. My neurons misfire; my neurotransmitters are unbalanced just like an infertile’s hormones, to use an example part of my readership may understand. Yes, it’s a struggle, but I live an honest life now and have for over a decade. I have achieved a sort of partial remission, and although for the last three years I have been battling grief and trauma, the bottom has not yet fallen out of my mind. But I have to live like it’s always a possibility, which is a burden a lot of you wouldn’t understand. Still, I’ve learned to take care of myself. I think, even if I cannot conceive and carry the baby I want so desperately, I might end up being okay.

schizoaffective disorder, parts I and II

PART ONE

Since I’m so done with pretending to be a fucking unicorn on infertility forums (that Scruffy, he tricks me all the time and I just need consistency), I wanted to talk about my psychiatric diagnosis and how it feels to be schizoaffective, bipolar type. A lot of people have never heard of this disorder, and it sounds rather ominous and intimidating and messy AF, what with the “schizo” prefix and all. But I’m not actually totally debilitated by my condition the way some people are, and I’m glad I get the medical, psychological, and social services to maintain a vague level of remission and normalcy — this is really just good luck for me, I don’t struggle as much as I could. I’m not homeless, like others that are beset with psychosis and although I can’t work right now, if you actually met and talked to me, you wouldn’t necessarily notice my symptoms. I might strike you as slightly odd, but honestly I don’t think that correlates with my diagnosis; that’s just me. If anything, you’d probably notice my anxiety, which may make you feel nervous as well.

A diagnosis of schizoaffective disorder pretty much means you have both a mood disorder and schizophrenia. You can be either bipolar type like me, with episodes of mania/hypomania and depression, or depressive type, with major depressive symptoms but no extreme “ups”. The illness can run very different courses for each individual patient, so it’s sort of a heterogeneous experience that can present in very different ways. Patients are often misdiagnosed with bipolar disorder or schizophrenia before it becomes clear that the two disorders are co-occuring. Schizoaffective disorder affects less than 1% of the US population.

People get wiggly and antsy about the schizo part. Schizoaffective patients suffer psychosis with their mood episodes (like many bipolar I patients have breaks with reality while manic), but also suffer psychosis in the absence of mood symptoms. Psychosis is a scary word with a lot of stigma attached to it — however, it is a medical condition like any other, requiring treatment with medication(s). I take the atypical antipsychotic Geodon/ziprasidone and it works amazingly well for me, although I still have daily psychotic symptoms (manageable) that I’ll probably always live with. Psychosis, by definition, includes hallucinations (auditory being the most common but all the senses can be affected), delusions (false beliefs that to the patient cannot be disproven), and disorganized thinking.

I’ve had mood swings and hallucinations since I was a child. In bipolar children, mood swings can be experienced as temper tantrums and I was somewhat incorrigible in that regard. My parents brought me to many therapists, but I’m old enough to say that when I was a child, childhood mental illness was not a “thing” — all the professionals I spoke with told me my problem was that I was adopted and thus fearful of abandonment. This was patently untrue; I really was never resentful of my adoptive family, I never was interested in knowing my biological family’s identity or history, and my home was safe and secure for me. This line of reasoning totally fucked with my mom, though. I’m pretty convinced she still has lingering doubts about my feelings towards her as a mother. It wasn’t really helpful for me though either, as I did not receive treatment for my actual medical problem, nor was it recognized that I had an actual medical problem with mood dysregulation.

I did not realize as a child that my hallucinations were unusual. I thought everyone had them. The first hallucination I remember was seeing a man pacing around in my room every night. I wasn’t scared; he made me feel safe. My therapist likes to romanticize my New England upbringing and claims I told her I saw Nathaniel Hawthorne in my room — I’m not that crazy, I swear!

I also have always heard at least two voices narrating my life. These voices are not “in my head”. It is not internal dialogue; I hear them through my ears, indistinguishable from a real voice but at this point I can somehow filter them out.

People probably remember me as an odd child, but I navigated life pretty well back then. I was always an honor student and had lots of friends who would perhaps remember me for my impulsivity, but not much else.

I remember the day I realized these experiences were not normal. I compare it to the time I was sent to the eye doctor in the fourth grade, as I also am severely nearsighted. I failed the eye test in a most spectacular manner. The doctor seemed angry. This child cannot see a chalkboard! he exclaimed, There is no way she can be doing well in school. I made all “A”s, and I truly felt I could see the chalkboard (I’m dating myself) just fine.

Until I put on my first pair of carefully selected purple plastic glasses, that is. Um, okay. I guess I really couldn’t see the chalkboard. Like, at all, but had somehow adapted…

PART TWO

I pretty much cruised through adolescence, but not without what would today be considered red flags. I had periods of not sleeping for weeks, followed by crashes into deep depressions. I would stay out all night, and since my sister was undergoing treatment for myelodysplastic syndrome and needing a bone marrow transplant, my mom moved into Boston to be with her at the hospital, while my dad put in fourteen hour days at his fledgling and ill-timed small business. No one noticed I was barely ever home when hypomanic, and when I was depressed I would get to school, wait until my dad went to work and then walk home to sleep all day.

My sister didn’t make it, and passed in May of 1996. I was dragged off to college kicking and screaming in August. The stress and grief were unbearable, and I went crazy. I wasn’t able to make it to my classes — I couldn’t find them, and the map of our small campus was indecipherable to me, appearing like chicken scratches on old yellowed parchment. The thought came over me that I was there for a reason, some divine purpose. I began roaming around, ranting and raving, and was unable to sleep. Oberlin College had what seemed like multitudes of dining halls, and I could never figure out which ones l was allowed to eat at with my dining plan, so I subsisted on Lucky Charms from the quaint little five-and-dime. I spent large quantities of money, somehow, in a tiny town with no retail to speak of, and somehow was under the impression that I was doing just great! My stay at Oberlin was brief. After the manic break, I sunk into the deepest depression imaginable and overdosed in Tylenol. I’ve told that story. I left college in an ambulance, and landed in the psych ward. I was extremely lucky to be alive. Tylenol is a really dangerous drug on which to overdose.

Since Oberlin was demanding I stay two years in a psychiatric facility before they would allow me to rerun, my time in the psych ward was especially terrible. Terrified that I would never be allowed out of the hospital, I did the best I could to maintain a facade of sanity. I didn’t do the greatest job; at one point another patient and I got busted for ordering food from the fanciest restaurants in Cleveland and having a courier deliver it to the looney bin (we somehow pulled this off for four nights straight before our nefarious actions were detected by the overworked staff). The other patient graciously took the fall, though. I emerged with a diagnosis of major depression with psychotic features and was sent home to my parents, who could not afford a residential program for me. I sort of rallied, though I was flying high on the tricyclic antidepressant Pamelor, an older drug (Prozac and SSRIs were new on the market and the doctors in Cleveland told me that Asian people didn’t respond to them, which I’ve never heard since and doesn’t seem to be true). I completed a day program in Salem, MA (also called partial hospitalization). In September of the next year, I said fuck all this shit and moved to Olympia.

day two of letrozole, round four

I have no idea what cycle day it is, as my period is back after a mysterious two day absence, but I took my second dose of letrozole last night. Outside it is cold and snow is quietly drifting down to blanket the Westside in something like purity. I am huddled under blankets, shivering because my Restoril gives me the chills even when it is sunny and warm. My little cat hunches down by my belly. I can barely move. I feel like absolute shit.

I’m just back from therapy, where my therapist reaffirmed my schizoaffective diagnosis. I feel a little disappointed that I’m stuck in such an ominous category, but it’s not really debatable. I rarely have mood episodes since starting Geodon in 2001, but I suffer psychotic symptoms in the absence of mania or depression; hence, “schizo”. I don’t really feel like I’m too crazy these days, but I am always very aware that I do not handle stress well and that this quest for a child could cause the bottom to drop out of my mind. I have to stop if that threat draws near, and I’m wondering about the wisdom of taking oral fertility medication when it has such deleterious effects on my mental wellbeing.

Still, we sally forth. This cycle is probably a bust, and who knows what the next will bring, but I just can’t give up when every cell of my being is screaming to grow a baby. This is what we’re meant to do, they remind me. My ovaries shrug. Good fucking luck, they respond, while surreptitiously rearranging their chromosomes with reckless impunity. I see my egg’s chromosomes fitting together like a puzzle, but the puzzles are assembled by someone who is three sheets to the wind and doesn’t give a fuck.

The Restoril is kicking in, bringing a delicious sleepiness. Most of the time when I feel bad, sleep is the only thing that makes me feel better. But I’m terribly agitated, my thoughts spinning out. In a few days, I will start peeing on sticks, trying to predict my ovulation by detecting the surge of a hormone called LH. Geoff and I have intercourse every other day throughout my cycle, but it’s handy to know we did it in the couple days surrounding ovulation, because that’s what gets you pregnant. It sounds simple, not as harrowing as it actually is. We have been living with our sex life on a schedule for three years — it sure sucks the joy out of fucking, no matter how much we try to change things up, add props, whatfuckingever.

What a drag it is getting old.

*****

oh no.

I am agitated and restless, and I kept Geoff up late last night with my yammering. At the time, it seemed vital that I impart the knowledge I’d acquired during the day about a new algorithm scientists had devised to link gorillas up with their perfect mates by inputting data on the gorillas’ genetic profiles and personality traits, and how it’s apparently more successful and accurate than any online dating site for humans has proven to be. I talked on and on about how gorillas scared me, and about the time my friend and I bought memberships to the zoo at Point Defiance where there were no gorillas, and after we paid for the memberships she told me she only wanted to see one exhibit a week and I stopped going because I didn’t want to drive all the way to Tacoma and pick her up if we were just going to see, like, one antelope per visit and also my favorite exhibit, the walrus, was too far away from the entrance for us to go see, ever. I was being selfish and possibly ableist (?), I know, but this was when gas was like, $4 a gallon and after the zoo I just dropped her off and went home, and here I was on food stamps, and she eventually told me I was an unreliable friend and she wouldn’t be renewing her membership and was all pissy about it. I told him about the time I brought my mom to the zoo and she immediately said, “I want to see the lion,” and I had to explain that it was a small zoo and there wasn’t a lion, oh, and I loved watching the puffins cannonball into the water from their rocky perches.

I knew Geoff was very tired, but I wasn’t and that’s what counts right?

No. I took an extra temazepam this afternoon to take the edge off, and am praying to the gods of mental illness that this teeny-tiny little chunk of Paxil is not flipping me manic or even worse, mixed. I’ve no time for an episode because I’m on this crazy suicide mission to conceive a healthy baby in the next five months and if they take away the Paxil I’ll be desolate and hopeless again, especially when I toss down my letrozole along with all my other pills that are supposed to chill me out. Paxil is the only thing I take that picks me up, and without it Scruffy will go on a bender, and I really fucking need him to be in tippy-top shape because hope sustains me and without my hope I cannot go on. Maybe I can maintain a refreshing flirtation with mere hypomania until I hit forty? Except it usually goes too far, way too far.

I had my therapy today, and talked on and on about the cruelty of our ruling class, Trump’s physical repugnance, that eleven year old kid that makes Trump cartoons and posts them on Instagram, and the circuitous path leading to my schizoaffective/bipolar diagnosis and how out of control I was before I started Geodon in 2001. The psychotic mania and subsequent crash into depression, and my serious suicide attempt at eighteen years old, all of which I’ve explained to so many therapists for so long I feel I’ve sort of already processed it. What I didn’t mention: my fear of creating life that turns out to monstrous, my fear of failure and dying alone, my suspicion that the last three years ttc will turn out to be all a waste of time and life, the fact that my temp dropped precipitously this morning signaling the end of this cycle and the terrifying onset of my next round of letrozole, my fear that I will never be happy again. You know, all the thoughts that consume me during the week and the things that only a psychoanalyst can help me with, and there she was ready to listen as I chattered on about a woman in mental health crisis in Oly this weekend that died after being administered something to calm her down and did she think that was excessive use of force? On the topics with significance to my actual traumatized state of being, I remained tight-lipped.

And in my head, a thousand voices tell me I don’t deserve a baby, and I blink twice and they’re outside my head so please let this temazepam calm me down because I don’t want to get dragged to the Crisis Clinic or start scaring my husband who is making me lobster tails and steak tonight by screaming about how the wolf spiders are laying eggs in the closet where I jam all my boots…

Please, gods of mental illness, give me five months off from bipolar — then you can hit me with everything you’ve got…