This is the second of a series of excerpts from Cracked Open, a book whose unintentional beginning came after I became physically dependent on Ativan in 2010. After a year of following my doctor’s orders for daily use to treat insomnia, my body and mind began to fall apart.
Cracked Open chronicles my desperate struggle with insomnia, the trust I placed in the doctor who treated me and the eventual dysregulation of my brain and body.
I’m serializing the book here – before sending it out into the world – because MIA became a lighthouse for me. I want this community’s feedback because I want to help make a difference. I want my words and message to be clear and strong. Your support and feedback will be a large part of what makes that possible.
March 3, 2009
I’m going on day four of watching the night die in front of me. I’ve slept three hours total, maybe four or five. My head burns. My arms and legs burn. I cried yesterday with Cassius on the bed. I’d forgotten where I’d put him, forgotten where my child was sleeping and ran to each bedroom, looking for the little moveable rocker with the dangling hippos and elephants. When I found him in his bassinet, I cried and he just looked up at me and I couldn’t stop. I sobbed with snot running out of my nose, holding his happy little foot in my hand.
I’m afraid I won’t be able to take care of him if this keeps up. I’m afraid I’ll leave him on the bed and he’ll roll off and hit the wood floor at a strange angle and when I find his limp body nothing will come. I’ll know that something is wrong but I won’t be able to move or talk. Police will be called. They’ll arrive with sirens and they’ll handcuff me and take me away. Local news stations will have pretty, blond newscasters talking about the tragic death of a Down Syndrome baby. Sasha from next door will talk about how I seemed like such a nice person. Sean will have a small nervous breakdown and they will take him to University Psychiatric where he’ll meet a Nurse Peach who will give him strength and hope. And through it all I still will not sleep. I’ll go mad. I’ll throw my shit at the walls. My brain will become a soup and Diane Sawyer will later do a program detailing the first case of Fatal Familial Insomnia in the United States. She’ll be gentle as she speaks of me in my last days, explaining that the rare genetic mutation once thought relegated to a family in Italy had now been found in Utah. She’ll explain the delirium and psychosis that comes with sleep deprivation. She’ll speak of who I was before the delirium and there will be pictures of me holding Cassius, my smile open and beatific. Sean will be next to me looking down, his hand on my shoulder. There is no known cure Diane will say, sad blue eyes looking into the camera, our photos lit up behind her. And for one Utah woman, the only cure was death.
March 18, 2009
In the past few weeks I’ve seen a naturopath, a nurse midwife, a sleep clinic doctor, a therapist and a shaman. One of them, I think, has got to know what the hell is going on. But no, they’ve all essentially told me that they think I’m fucked.
Each has asked if I watch TV before bedtime? No. Vigorous activity? No. Overconsumption of vodka or hot chilis? No. And the inevitable question: Am I scared of having another Down Syndrome child? No. No! No!!! Fuck you! Fuck all of you! Fuck your brothers and your wives and your little dogs and your happy, sleeping children!
Naturopath: I’m afraid you can’t take herbs because you’re in your first trimester. You can’t take much of anything, really. Try sitting with your legs up a wall and breathing through your left nostril for eleven minutes every two hours or so. It soothes the parasympathetic nervous system. Chamomile tea is good. We should look at some adrenal supplements. You sure you don’t watch TV?
Nurse Midwife: Unfortunately you can’t take sleep medication because you’re in your first trimester. We don’t want the baby born with no arms or legs do we? Little torso of a baby? Try Benadryl. And earplugs work wonders. Keep up the good sleep hygiene.
Sleep Clinic Doc: You don’t have sleep apnea and that’s all I can figure. That, and the fact that you’re fucked because you’re in your first trimester. There’s not much research on pregnant women. Who’s going to do experiments on pregnant women?
Therapist: How do you feel about your son? Are you sure you’re not concerned about having another child with special needs? No? Anxiety can manifest in a number of ways. And you may have PTSD from your c-section. I’d recommend meds but you’re in your first trimester. And you recently became unemployed is that correct?
Shaman: You’re in the belly of the big snake. Now I’m gonna blow some tobacco smoke up your ass and bang on a turtle shell.
March 20, 2009
Sean is freaking out. He’s gearing up for his landscaping season and I am completely wasted. I’m managing one to four hours of sleep a night – just enough to keep from being admitted into the psych ward. The days are a wash. I forget things. I had to call Sedina to come over the other day because I was scared for Cassius. More sobbing in the bathroom while she laid out Goldfish crackers to try and get him to crawl a few feet. The other night, Sean found me on the back porch swing at 3 a.m. I kept pounding my head against his chest and begging him to just take me out.
I’m a burden. I’m a wasted, pregnant burden who can barely make it through the day and now Sean is saddled with me. No going back. No exit, boy-o. This is your life. He cried the other day. We were in bed and I was sighing these big sighs and he looked at me, his eyes red:
“I’m scared,” he said, looking at the floor, the little tangles of dust.
“I know, baby,” I said. “ I know. I am, too.”
April 30, 2009
I walk into the hospital for my monthly appointment with my nurse midwife, hauling Cassius in his portable car seat. The kid is getting big. He’s become an extension of my arm, my cooing terminus, the only thing on which I can focus for more than a few seconds at a time. This hospital is massive. When they first built it people started calling it the Dark Star, a name derived from some unknown sci-fi film, one which probably never existed but which gives the unmistakable sense of something ominous. The place could lift up and hover over New York City and it would blot out the sun.
I bring Cassius’s tiny, squeaking alligator. I bring milk, though he’s become fond of crackers and avocado and pureed yams. I do not read the Good Housekeeping magazines on the coffee table in front of me. I do not look at any of the other mothers, teen or otherwise. I simply stare into the nothing in front of me and occasionally squeak Cassius’s alligator for him.
At fifteen minutes past eleven I’m ushered through the heavy door that opens into a labyrinth of offices. A young girl in mauve scrubs with an acned chin and sensible shoes asks how I’m doing. I say something inconsequential, something that keeps me from crying, something that deflects. This girl’s job is to weigh me and escort me down the hall, nothing more. Look at my son, I say. He’s going to crawl any minute now. He’s going to steal my keys and crawl out of here and drive to a burger joint. Just watch. She laughs. I pretend to laugh. Ha ha ha. Life is funny, isn’t it? Life is so funny.
I sit in my room. It’s unbelievably bright. Why do they make these rooms so bright? I jiggle Cassius’s car seat with my foot. He sees something in the air and gets this startled look, blue eyes growing big as headlights. I’m used to this look now. Chase and I call it the ‘rapturous air’ look. Cassius gets all shivery and euphoric, as if William Blake himself had appeared and opened his hand to show Cassius the face of God.
The nurse midwife that comes in is not my nurse midwife. This isn’t Angela, the one who spent over a year in Guatemala teaching rural women how to deal with breech babies and hemorrhages and preemies. This isn’t the Angela who sat with me in the hospital after I thought my water had broken with Cassius and told me that no, all that extra fluid wasn’t amniotic fluid, but semen. This isn’t the Angela who leaned in and asked if my man was perhaps a wild boar, the kind known for producing over half a pint of semen at a time? Oh, we had a good laugh, Angela and I. She’s damn funny. And smart. But this wide, nervous woman isn’t my Angela. This is Mary Beth or Mary Ann and I’ve never met her before this very moment. Angela is delivering a baby, I’m told. She’s busy. She’s hands-deep and Mary Ann or Mary Beth or Mary Whomever is taking her shift. She sits down to open my file in the computer and asks the one question, the awful question that’s the tiny prick against my membrane pulsing with hemorrhage.
“So, your weight’s a little low. How are you feeling?”
I begin talking and it’s a slow fall down a steep staircase. There’s the initial sense of being off balance, the foot hanging out lopsided, the hands whirling in the air. And then there’s the fall. I’m outside of myself looking in. I’m telling this Mary Whomever that I haven’t done it, of course, I’ve only thought about it but that if sleep doesn’t come, I may ram my head into a concrete wall. Clearly this is something that I shouldn’t be saying. This is something that shouldn’t be said unless one desires a sudden and swift psychiatric evaluation, but I’m saying it.
“If I don’t sleep, Mary Ann or Mary Beth, I will ram my head into a wall. My ten-month-old has Down Syndrome and I’m starting to hallucinate because I haven’t slept in months and if you can’t help me I swear to God I’ll do it.”
The idea blossoms and then turns bloody in my head. What if I wimp out and simply give myself a hard knock? What if the whole business hurts like a motherfucker but I’m still awake with a stupid crush of fresh blood in my hair and then what?
There is a print on the wall of a young woman in a garden. The whole thing is in various shades of cream and the woman’s hair is soft around her face. She looks well rested. She has a basket with violets on her arm and is bending over to pick more.
I look up at Mary Ann or Mary Whomever and nod at the print. “Pretty picture,” I say. She looks at me, looks at the picture and then back at me. She hasn’t been trained for this. She’s never dealt with someone whose cheese is sliding off the cracker. She stands and puts both hands in front of her as if to stop an oncoming train.
“I’m going to go consult with one of our doctors,” she says, backing out of the room. “Just wait here.” Clearly, something needs to happen. Something big. Mary Whomever is going to back out of the room and call the big guns and pray. She will get down on her knees and pray in the little supplies closet and I will keep crying, even after she’s exited the room. She will hear my sobs and she will pray harder. She will call someone. I shove hands against my eyes and press hard. Cassius is staring at the print on the wall. I wiggle his seat and put my head against the little counter that the computer is on. Mary Whomever comes back in.
“We’re getting you a prescription for Ambien CR,” she says. “You’re at thirteen weeks, so the doctors say that it’s safe for the baby. You can also take two capsules of Benadryl. That will boost things.” She is worried that I will break down again. She is worried that I won’t get back up. And I am worried. I will take the little pills because I’m terrified. My body has never failed me in this way, never turned a sudden corner and skidded out in the horrific slow motion tumble that always seems to happen before a fatal and inevitable crash.
I walk out with my prescription. It’s so innocuous – just some scribbles on a page. I will take the 12.5 milligrams that will put the emergency brake on in my brain. I will skid to a stop. I will fall over and then, finally, I will sleep.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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Melissa, This is very well written and oh so true to your truth. It is difficult to write about the hard times in life when things are spiraling out of control or at least it sure does feel like it!
I too have a special needs son( hate the term but he has had different dx so how to describe in three words or less?) and being intelligent,aware, and resourceful sometimes just doesn’t work. The most frustrating thing is dealing with helpers who have no f…… idea of what you are going through, what you have tried, and all the things that just haven’t worked. You describe this scenario well. Been there, done that, and am still like you still here! Keep on you are right on target!
Thank you so much! And I’m right there with you on the “special needs” terminology. Makes me crazy. I’ve been using “differently abled” but even that says ‘other.’ I’d rather he just be Cassius, end of story.
So glad we’re both still here! I’m not giving up!
Why can’t mothers in such a situation simply get someone to help take care of the baby? With working husband and horrible insomia – do pills have to be an answer? People who are sick and cannot work get disability payments but what about mothers who need some time off to be able to sleep? It’s hard to have a baby in any case, to have a “special needs” kid is even harder but doing all that with insomia sounds like hell on Earth. It’s heartbreaking.
Hi Melissa, just wanted extend some appreciation and support for the work you are doing, and congratulate you on your recovery. I myself am a psychiatric survivor (who experienced profound insomnia and a destroyed circadian rythm, amongst other terrible symptoms while on, and weaning off psychiatric drugs), and I could relate so well to the utter desperation and frustration you describe so well. Thank you for your courage. When I was at my darkest and most hopeless, I turned to the internet, desperate to try to find some answers for myself. Reading countless experiences shared by brave and selfless people like you helped me realize that I wasn’t alone, and that I was right about the damage the medications wer causing me. By waking up to the insanity of the mental health industry, I was able to take back my own power, and find true healing. So thank you for sharing your story and helping to inspire other people to get well!
Whew, this made me feel anger to read, especially those responses from the practitioners, so negative and with complete lack of empathy.
Just once, upon facing a complex and stubborn issue related to health, I’d like to hear, “I can see you’ve explored this thoroughly and have failed to find any relief, which I find unacceptable. Let’s see how we can explore your issues together and discover what the solution to your particular issue, here. There is a solution to every problem, regardless of how complex, and we won’t stop until we find it. You let me know along the way when you feel encouraged, or when you are feeling frustrated and would like to change course in our mutual exploration.”
That seems like truly partnering in healing, and every reason to feel hope, optimism, and relief–healing in and of itself. Is that really too much to ask?
Btw, that’s my patter to clients, in every case, because I truly believe that.
Your writing is wonderful and very vivid in its emotional journey. Thanks for your courage and honesty.
And your patter sound like lovely patter. The kind of patter that needs more space and presence in the world.
Thank you for sharing this excerpt of your book. I can feel your frustration with the practitioners that you visited. I can also totally relate. It reminded me so much of the time back when I had stumbled across Matt Samet’s story and “the lightbulb” went off for me that it was more than likely these drugs making me sick. I got ZERO help from the psych prescriber or the therapist I saw in her practice who insisted it was my “mental illness” that was “refractory” to treatment and if I went off the drugs, I would be more “mentally ill” than ever, despite only starting these things for work-related stress (the SIX pills she had me on had made me sicker than ever and it couldn’t possibly be the so-called “treatment”, it HAD to be ME that was the problem).
Then I saw a new psychiatrist who mocked my agoraphobia I’d developed from tolerance and didn’t see why I couldn’t just go outside with ease. He also decided that I needed the medication BUT I didn’t need both Xanax and Klonopin both like the previous psych thought, so I should just CT the Xanax. Which then, of course, put me in a partial CT state b/c I’d dropped a huge percentage of my benzo dose.
Which then led me to a detox center (as I was desperate by this point to feel better and to get off these drugs) which insisted I was an “addict” and needed off only the drugs they deemed “addictive” but I needed MORE of the other psych meds (which also cause physical dependence and that I couldn’t tolerate now that I was in benzo CT without having severe reactions to them).
Then I saw another psych, ER doctors, cardiologist, etc in full blown CT withdrawal who told me that I couldn’t possibly be in benzo w/d b/c “the drug is out of your system” and that I “had a chemical imbalance in the brain” while they pointed a pencil to some part of a plastic brain to indicate where this supposed “imbalance” was located in my brain.
So, the detox center said I’d “die” if I continued to “use”. The psychs said I “needed” the drugs to be “well” and to “treat” my “mental illness”. The ER doctors and cardiologists didn’t believe me. F*CK!! WHICH WAS IT?!! All I wanted to do was to FEEL BETTER and get my life back and for someone to HELP ME!
All along I was just DESPERATE to be HEARD and for someone to LISTEN TO ME. I feel that from you too in this writing. and the ridiculous chasing of your tail that happens so often in these cases just looking for solutions without much help from the medical community. We can’t even get adequate healthcare in the tolerance/withdrawal situation because absent some doctor taking into consideration the withdrawal, they will come up with a differential diagnosis without including the drugs/w/d and thousands of dollars later, after much wasted time and frustration, you still have no answers b/c you can’t find a knowledgable practitioner that will say “it’s the drugs!”. UGH!!
Thank you for sharing your story with us and I wish you all the best with your continued writing of this book. I look forward to reading more about your struggles through this iatrogenic illness.
I wanted to read more, very engaging, Melissa. Best of luck with your book.
I, too, am working on my story, and it is hard going back and reading all my old journal entries. I’ve avoided reading them for many years, while researching medicine and living life. But it’s rather interesting, too. My iatrogenic disease was actually psychosis created via the central symptoms of neuroleptic induced anticholinergic intoxication syndrome. It was called “bipolar” by the doctors, primarily.
But I’m kind of relieved to find, as I’m reading through my old writings that I wasn’t really that crazy, I still contemplated the same philosophical questions as I do now. I was sleeping too much, rather than too little. But I had the “voices” of the people who’d abused my children pumped into my head with the drugs at that time. And it was the “voices” that were crazy, more so than me.
I would imagine we will have decades of books written about today’s psychiatric, medical, and pharmaceutical industries’ betrayal of the American people, given the magnitude of the problem. Again, best of luck with your book.
I understand the strange feeling in going through the old journals. I’ve had to do it to put the book together and it’s pretty painful. But your right – I see how much I thought I was going crazy when in reality I was simply very sick and the world around me was telling me I was ridiculous.
Best of luck with your book!! The more out there the better!!
This is me- and I’m in Utah! I was pregnant with two kids, my son has special needs and I was told to get off the Ativan. I never wanted to be on it but couldn’t ever get off. It’s been a year. I miscarried and went through hell and still am. But I understand this now and I know I will heal. Thanks for sharing this.
Beautifully written and powerful. The world needs more books like this. The way you were made to feel comes across very strongly, and the general public needs to know how useless most medical professionals are in situations like this. Don’t stop writing, you are on to something good.
Thank you so, so much Ted! I’ve loved reading you on MIA. I’m a big fan!
I’m deeply grateful for all the supportive comments. I’m also (as per usual) heartbroken at how many people have gone through what I went through.
I recently pitched the story to a local NPR affiliate that does in-depth interviews. The producer asked me if my story was indicative of a broader problem or “just one person’s bad reaction to a medication.” My jaw dropped. It continues to drop and my only refuge is in the writing.
Deepest gratitude to all of you. May the eyes of the medical establishment’s eyes be opened (only time I’ve used e.e. cumming’s for something slightly less than poetic).
I truly hope you are able to be part of a story on NPR. It would just be so validating.
Wow, seriously? An NPR journalist is completely unaware of this issue, while it’s all we talk about on here? Where is this information going, into a black hole? I find this truly mind-boggling. Congratulations on breaking ground, Melissa!
The show is Radio West with Doug Fabrizio. You might be familiar with it. He’s a wonderful interviewer but clearly not terribly informed on this particular issue. They seemed interested but wanted me to publish the book first! So, I’ll hit them up again. When I do, if they decide to go for it, I’ll post here. Please, please call in! They’ve got to know it’s not a random occurrence!
Love Doug Fabrizio. I will definitely do whatever it takes to get this out there. I’m an assistant in two online support groups for benzodiazepine withdrawals. All they have to do is look at the thousands of people in bwsg and bwsr on Facebook or on benzo buddies to see this is an epidemic. One of our current goals is to bring in educated medical professionals, get them approved by the AMA, and encourage our doctors to attend their seminars as part of their continuing education. I’d much rather save people before this happens to them than afterwards.