OCD in the hospital

A few more entries from my "journal" during our recent hospital stay with our lily, and then I'll try to get back to that "recovery series"!

Christie arrived yesterday, and with my two precious nieces quite literally cleaned our hospital room floor for me. Little hands spilled Christie’s entire water bottle, and both pairs of little hands helped mop up. They’ve been all over the floor and then all over everything else: lily’s bed, my bed, ann’s bed, the chair, the table, the hospital food tray… my brain finally stopped keeping track of the things that touched things that touched the floor. Once again, Christie and her babies have done my ERP for me.

* * * * * * *

The day before surgery, lily says: “This reminds me of ‘The Wild Robot Escapes’ when Jaya and Jad helped remove Roz’s transmitter so she could escape from Hilltop Farm. I’m just like Roz! I have to have my transmitter removed so I can escape from the hospital and get back to where I truly belong.” Lily’s story-loving brain is churning to process what is happening to her.

* * * * * * *

“Transmitter’s all out.” Dr. Matthew, Neurosurgeon, bends over lily’s waking body to whisper in her ear, coax her to wiggle her toes.

* * * * * * *

About an hour after arriving in PICU, she’s alert enough to ask:

“OK, but Mom, what’s it really called?” (She means, what she’s dubbed her transmitter).

“Well, I think the doctors said” (digging deep for the words I had to practice over and over) “it’s called a Pilocytic Astrocytoma.”

“Oh." And then with a sigh: "It’s hard work getting my Pilocytic Astrocytoma out so I can escape from the hospital and get back to where I truly belong.”

I remember they warned us she might temporarily lose her ability to speak. 

I ask her to take a shot at spelling the word I couldn’t grasp or repeat the first time I heard it, and she gets it pretty well right, just two letters off. Then,

“I hope ann doesn’t get it… or you or dad….”

My head buzzes, my heart thuds.

“No, no, this isn’t like that. It just grew in your special brain.”

“Is it because I like robots so much?”

Oh lily, you’re back. It’s really you, all you; their huge fingers didn’t slip, stayed steady, didn’t nudge any of your delicate grey gears that turn and churn out your gifts to the world.

And now I think you have glitter in your brain.

Looking back

You finally get to hear from me, J again. I'm ashamed its been so long since I've written! I wrote the following post just after Christmas, so I will put it up before I go on to what has been happening more currently:

I've been quiet this Christmas season--just soaking up family time, creative giving endeavors, baby-enjoyment, and delicious aromas and flavors of the season.

For me, all of the Christmas trappings seemed to joyfully whisper the reminder: "This is not last year."

Last year was, as a dear one put it to me, a "very strange Christmas." Indeed it was. For one thing, I nearly spent Christmas in the hospital. Most of my family and friends, even I myself, had been convinced that I needed some serious help, probably hospitalization. I was at the point when I was too terrified to prepare food or drink for myself--I just didn't trust myself to prevent contamination. There were days when Jem would come home to a starved and desperately thirsty pregnant wife, and literally have to spoon-feed me because I was too afraid to touch the spoon with my 'contaminated' hands. I wasn't gaining weight properly and I was dehydrated. But most of all, I was feeling utterly hopeless, often close to hysteria, the thought of death as a welcome escape never far from my mind. My psychiatrist didn't see a place for me in the hospital however, and perhaps if she had sent me to the hospital my anxiety would have simply been un-manageable (in my mind, the hospital was the very most germ-y and dangerous place to be!) So I was sent home, appointment after appointment, with a little increase in medication and the platitude: "You'll be okay."

A week or two before Christmas, a public nurse came to visit me. She saw no other alternative than to send me to the hospital, but Jem and my psychiatrist rescued me from a hospital food Christmas dinner. It was too little, too late. Jem was angry. He felt I had needed the hospital months ago, not now, not instead of family and love and a Christmas at home. So I got to go home, and I saw my husband really angry for my sake. That felt kinda good.

Rather than the confinement of a hospital then, I spent Christmas in the confinement of fear-paralysis. My dear family spent Christmas trying to anticipate my fears and keep my anxiety down.

Nonetheless, I held on for dear life to the Christmas message of peace on earth. I longed--I still do long--for that peace, as all of creation longs and groans in expectation (Romans 8:22). For some reason, God wanted my family and me to feel that groaning more sharply last Christmas.

And for some equally strange reason, a year later He has given me a tremendous measure of freedom. This year I didn't walk miles around the Christmas poinsettias for fear of the potting soil being contaminated. This year, I didn't cry for hours after someone brought home fruits and vegetables. I didn't come to the Christmas meal with my freshly-washed hands up in the air, surgeon-like, to keep dirty water from wrists and arms from running down to my fingers. This year I savored Christmas cookies in my fingers, dipped in milk. This year I sat on the floor with my baby and helped her open gifts. This year I held a healthy, happy, beautiful baby in my arms, gift of God's grace. This year, I really celebrated.

Headaches, hospital, and hope

So I thought I should give a bit of an overview of my stay in the hospital, and then I should be able to move on to newer and (hopefully) better things. I'm sorry if it seems jumbled, there's lot to talk about, but I'll try to make it short-ish.

Like I mentioned before, I got a headache the week I was hospitalized. I really do believe that this was one of the major stresses that made staying at home impossible. I've had these headaches since I was little. They tend to come when the weather is changing (spring and fall) and last for several weeks. They aren't continuous, but rather I'll get 8 or more a day that last for 30 minutes to several hours with headache-less breaks in between. Previous to baby N. I would hole myself away for the worst of my headache days and function at a low, but manageable level. Doctors always told me they were "stress" headaches - because school starts in the fall, so I must be stressed, and exams are in the spring, another stressor. I've known for a long time that they can't possibly be stress headaches, but try telling that to a doctor. Luckily for me there was a family medicine resident working with my psychiatrist who seemed to take a particular interest in my case. He spent two hours with me gathering my history and symptoms. After doing a bit of research, he suggested trying Indomethacin, a powerful non-steroidal anti-inflammatory (NSAID) kind of like ibuprofen. I was skeptical, to be honest. I'd tried ibuprofen, usually to no avail, and I'd also had Toradol (another NSAID) during my time in the hospital that also did very little to help my headache. But with the first dose of Indomethacin I noticed a significant improvement in my headache. I woke up a few times that night, thinking to myself "Hey! I don't have a headache! That's kind of awesome!" The next morning I found the resident and thanked him wholeheartedly for this wonder drug. Later he told me he didn't think it would work. He told me he was trying to rule out some really rare headache types that respond particularly well to Indomethacin. He made a provisional diagnosis of Paroxysmal Hemicrania. I never imagined getting such a good treatment, let alone a diagnosis, but honestly I don't really care what they call it, so long as I can function at home.

Getting my headaches treated was wonderful, but there were other things that helped greatly during that time. For one thing, my mom came to help out while I was in the hospital. A. had to be working so it was so nice to know that my baby was being well taken care of by someone I trusted while I was away. And she was amazing. N. loves her grandma, and by the end of the week would reach for her, even if I was in the room (that hurts a little, Babe!). My mom would bring N. to me twice a day to nurse and visit and did an amazing job of making me feel loved and cared for and a little less guilty.

N. was a little light in my day. I looked forward to seeing her, which was a nice feeling. Often, in the evenings I would still get anxious, I would dread going home and I would feel like taking care of her by myself would always be impossible. But I loved those visits with her. She would smile and laugh and play with me and bring me such joy and pleasantness to bleak and difficult days.

They let me set up N.'s playpen in my room at the hospital. She didn't particularly like being cooped up, but it was so nice to have her around.

A. was also wonderful. Even though he was working for the majority of my hospitalization, he visited me as often as he could, made me laugh and held me while I cried. I couldn't have done it without him. I wonder what the nurses thought of our family's dynamics, though, because whenever A. was around my mom and baby weren't, and whenever they were at the hospital, A. wasn't. Trust me, we all get along great - it was just a bit of a a scheduling nightmare.

I talked to my siblings and my dad a lot during that time. They prayed for me and read to me and distracted me when I was at the edge of anxiety or bored out of my mind.  I also got texts, well-wishes and prayers from all of my in-laws. I'm so blessed to have married into such a wonderful family. They were all so encouraging and hopeful. A friend who had also suffered through PPD came to visit me, and my best friend called from Oxford to see how I was doing. Being at the hospital was so hard, but I was also so encouraged by everyone around me.

There's so much more I could talk about: Specific things people said or did that were helpful, things that I learned about myself, verses that were particularly encouraging, and ways I learned to help manage my depression. So I will continue to try to put these in writing, as I have time. For now though, I think my baby might be waking up from her nap.

Ambivalence

In order to be admitted to a hospital as a formal patient, two physicians need to fill out and sign an Admission Certificate (Form 1). Typically the first is the emergency room physician and the second is a psychiatrist (that isn't always the case, but is how it worked for me). The ER physician's certificate was quick and not overly specific. The psychiatrist's certificate, on the other hand, read like this:

On the following facts observed by me: Postpartum depression for several months, no apparent trigger but has been feeling like harming herself and her child. Some ambivalence about hospitalization with risk of harm on discharge.

 On the following facts communicated to me by others: History of depression, becoming worse, now with thoughts of killing herself and harming her 8/12 baby. Describes dissociative episodes. Does not feel safe leaving the hospital.

Two words stuck out to me as I read this Certificate in the days that followed: Ambivalence and dissociative. I'll talk about the idea of dissociative episodes at another time, but for this blog post I want to focus on the word "Ambivalence."

I would like you to understand that the word ambivalence epitomizes my struggle with PPD. It is my ambivalence towards every part of my life that makes this depression so incredibly hard, confusing, and frightening.

Let me give you some examples:

- Life: This is what came crashing down on me that Friday night. I don't want to die. I didn't want to die. Believe it or not, I would much rather live. But that night, and many others before it, I also did not want to keep living. Living was too hard. Living requires motivation, concentration, energy, will. I just didn't have any of those things in that moment. Death seemed like the only answer to a series of questions about the point of fighting to stay alive. I do want to live. I want to see my daughter grown. I want to have many more "I love you" moments with all of those people most important to me. It's just that all of that fades so far away when depression pulls so deep.

-Being a mother to my baby: I love my daughter. Please, please understand that. I want what is best for her. I beg God for protection over her every night. And every night I sneak into her room to watch her sleep. So often, though, I have wished I didn't have to be her mother. Sometimes I wish she didn't exist. Not that she would die, not that I would go back in time, knowing what I know now and choose not to have her. No, simply that she would never have been. I am certain I am a terrible mother. I am certain I am making terrible mistakes. And she exhausts me. I barely make it through some days holding on to her bed-time like a beacon to the time I will have to myself, only to have her stay awake far beyond her usual routine. And I crumble. I don't want to do this. I just want to disappear. I don't want to be a mom. But please believe me when I say I love her with my whole broken heart.

- The way to heal: It's possible those observant readers have already picked up on this one. In this post I mentioned my psychologist encouraged me by giving me specific things I could do to help speed up my recovery, but in this post I wrote about how comforting it is to know that the depression isn't my fault, that there isn't anything I could have done to prevent it and that I will eventually heal. I've found this example of ambivalence in my life as a new mother time and time again. Someone will offer some (not-so-helpful-and-not-so-asked-for) advice and I get so frustrated because don't they know this isn't my fault? And in the next moment I'm trying to find one strategy or another to fix my depression. I think that I do need both: There are things that I can do, but I also need to be patient as I heal.

- Hospital vs. Home: This is the ambivalence the psychiatrist was talking about. I mentioned in my last post that I did not want to go to the hospital. I begged and pleaded and stalled and stalled before finally letting my husband take me. By the time morning came nothing had changed. I still wanted to go home. But I remember as nurses, social workers and doctors did their rounds that morning, they all talked about discharge... and I cringed. I didn't want to stay, but I couldn't imagine going home and I felt like they weren't listening to me. My husband came to the hospital to let N. nurse and I remember crying because nobody was taking me seriously. Then the psychiatrist came in and decided to hospitalize me. He told me he was going to admit me as a formal patient and I cried again. I didn't want to be there but I still didn't want to go home, either.

There are other examples, but I think that this gives a pretty good picture of what I mean by living ambivalently. Honestly, I don't really understand how I can feel so strongly in opposite ways. It really is confusing to want two things that cannot possibly exist together. It is frightening to want something that flies in the face of everything I have ever valued and everything I truly care about. And it is hard to go through such conflicting emotions, trying to sort them out in a mind that can barely comprehend those things known to be true. It's getting easier, though. I'm enjoying being at home (most of the time), I'm beginning to find the balance between patience and action, and I rarely think about death, or about blotting out my daughter from my life.

Yet another breaking point.

I haven't written in a while for two reasons. First, our computer died, making writing anything a little bit difficult (I didn't much feel like writing out a blog post on my iPhone). Secondly, and perhaps more importantly, I was hospitalized for all of last week. I wrote a lot in my journal last week and so I'll share bits of what I wrote for the next little while. Please be aware if you do suffer from PPD or other forms of depression that this post may have some triggers that you may want to avoid.

September 22, 2013

I have been hospitalized as a formal patient. So the police will come looking for me if I try to leave. How awkward. We had a bit of drama Friday night that led to this visit to this hospital. I'm not sure what all contributed to it, but I know that I was stressed about packing and getting everything ready for the trip to Saskatchewan.

A. and I had decided earlier that week that I should go to visit my parents in Saskatchewan so that I could get a little extra TLC. I was having really bad headaches all week and, consequently, wasn't coping very well.

I was making up a packing list and a to do list before leaving and realizing that I had a lot to do. I was already getting anxious before this and it just made it worse. A. put my Clonazepam bottle in front of me, indicating I should take some, but I ignored him (to be honest that action erked me a little). A little while later, as my anxiety continued to mount, he got me a glass of water and put a Clonazepam in my hand (interestingly, that action didn't erk me) and I took it but I guess it was too late. I started to feel really agitated. I felt like I needed to get out of the house. It was such a strong urge - I just wanted to run. I remember repeating to myself "I have to go somewhere... go somewhere... I just need to go. Somewhere. Somewhere." And I just walked. I felt totally out of control. Unable to concentrate on anything but walking. Somewhere. About a block later I realized that A. had followed me. But I still couldn't stop. I was driven. 

Please, please, stop reading here if there is any chance a foray into my hopeless, depressed psyche could hurt you in any way.

I wound up near a pond in our neighborhood and I thought I might able to drown myself. The water would be cold, my clothes heavy, and I didn't have the desire to fight it. Maybe I could force myself to dive, then breathe... maybe it would be over soon. The street lights were dancing in the water's reflection and it looked really peaceful. So peaceful. "I'd like to be that peaceful," I thought. And I walked towards the water.

But A. was there and he figured it out. I remember saying "You should go back to be with N., I'll be fine. I promise, I'll be fine..." In a minute I'll be fine. 

But he wouldn't leave me and then he said "I'm taking you to the hospital." 

And I flipped "No, no, no. I promise I won't hurt myself, I won't kill myself. It's a pact for safety. If I say I won't, I won't. I promise, I promise." And I really did mean it.

A. wouldn't relent. He let me sit with him and cry. He let me take a shower. He let me pack up a small bag with a toothbrush, change of underwear, a picture of N. He put my Bible in my bag. I stalled and stalled and asked "is there any way I can convince you to let me stay?"

And then he said the thing that changed my mind: "We've had too many close calls. What's it going to take before you let me take you? I'm the one who will have to tell our baby what happened to her mommy. And when she asks me why I didn't take you to the hospital, what am I supposed to say to her?" And I thought about my baby grown, but still young, wanting her mom and blaming her dad for not taking better care of me. And I knew that would be wrong. I knew he was right and doing everything right. So, finally, I relented. We woke our sleeping baby came to the hospital and I was admitted in the morning to unit 34. It sucks. And it's painful. I miss my baby. I miss my husband. I'm bored and I'm scared.

Don't worry. It gets better.