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.

Tumor

Note: this post was composed the day of the surgery, and published much later. To avoid confusion, I must direct you to the following post to find the happy conclusion to this saga! We are learning words like “resection”, “lesion”, “ataxia” and “Learmonth’s phenomenon”.

We pass them around like a hot dish of a grandmother’s brussels sprout casserole nobody wants to eat: “tumor,” “malignant,” “benign,” “the C-word.” 

“Brain surgery” is no longer one of Plato’s theoretical concepts, but something happening to our daughter, today. 

After that first scan I watched myself receive the words, “Unfortunately, we found something…”. I was surprised at my lack of panic. But then words came out of my mouth that I hoped never would, right there in front of my child. I was not prepared for this. I did not rehearse.

This morning I wake and the thought slowly forms in the pre-dawn as if from a script I am reading the first time, someone else’s thought: “lily goes for surgery today.”

I don’t know how to play this role. I can’t identify with this woman walking down this long hallway to the surgical suite beside a waif of a girl with a mass in her brain. I watch her and think, “That is the mother,” but I can’t imagine what she should be thinking or feeling.

The head surgeon, the one with the steel blue eyes, takes my hand in his huge one and fixes my gaze with his confident one. 

There is little to say. So I indicate the stuffy lily chose to keep with her and I say, without letting his eyes go, “She sheds glitter.” 

Pathology

The pathology report comes back.

Benign.

Christmas Reflections

Lily opened a window on her Advent calendar one day this Christmas and found the verse Isaiah 11:6. We talked about the strange image of these animals sleeping together with a little child for leader. “It’s talking about peace,” I explained. Lily was struck. She declared it to be her “new favorite verse--because I love peace.” It was a poignant moment for a child whose life had been much devoid of peace recently. 

Peace this Christmas meant being home together as a family. Peace meant having a routine. It meant gathering each night around our “Jesse tree” (a family tradition to review the Bible’s redemption story during Advent). It meant no headaches and screaming and vomiting. It meant no early morning trips to emergency, only to be told to go home and give a Tylenol. It meant no IVs and no nurse call bells and no pokes and flushes and vital sign checking. It meant Lily tolerated drinking and teeth brushing and bathing. Peace meant the simplest things, and it meant the world.

I barely did any shopping or baking or decorating or crafting or any of the usual hustle I’ve done around Christmas ever since I was eleven and awake to the drive, the search for that elusive “perfect Christmas”. I was amazed at how much rest there was in simplicity. I soaked in every moment of twinkling lights and silence and loved ones nearby, especially lily. Her bright eyes and vitality and creative spirit bathed everything with a new glow this Christmas.

Recovery Series Part Two: an unwanted teacher

So here we go. Answering the question: what helped me recover?

I already hear a voice in my head yelling, “Whoah, back up, are you even recovered? Answer that question first!” Aha, no fear, I know the answer to this one: “yes and no, duh”. Now let’s move on, Perfectionism.

Earlier I dedicated a series of posts to the support of friends and family (Walk With Me), which I argue is the biggest factor in recovery. Friends and family can provide everything from mental strength and moral support, to financial and practical help, to the basic motivation to recover, and the even more basic will to live. I’ll probably talk more about personal support in the future, but for now I’ll just send you to the previous series here. 

Meantime, I’m starting off with something maybe unusual, just to keep y’all on your toes: one of the most important pieces that set me on the road to recovery was my own past mental illness. 

One day I’m going to write a book called Dear Depression: Thank you. I’m not grateful for mental illness, but it has offered a few unexpected gifts, and every teacher no matter how strict or unsympathetic ought to be at least acknowledged. No, perinatal mental illness didn’t come clear out of the blue for me. I had already struggled with both depression and anxiety. I had also been diagnosed with an eating disorder as a young adult (which incidentally, may be related to OCD). 

It was easier, for my mother and Christie at least if not for me, to recognize the tell-tale patterns of a downward spiral. My family doctor too had supervised my coming off an antidepressant, so he knew to pay attention to mental health symptoms.

The medication choice was more obvious since it had worked for me before. And when I learned about ERP (Exposure Response Prevention--I’ll talk more about this soon), I recognized it as similar to the therapy that helped me recover from an eating disorder: facing fears like walking by a garbage can or cracking raw eggs did not feel that different from eating a pudding, or not exercising for a couple days in a row. Knowing what to expect from therapy can make it a bit easier to go through the second (or third or tenth) time around.

And once I was on the road to recovery, I did start to recognize the patterns in my illnesses, and to be able to apply the things that had helped the last time. Almost magically, as I learned new skills from a new therapist old wounds that still hadn’t healed from previous struggles finally did heal. I thought I was in therapy for OCD, but found out I was recovering more fully from anorexia.

So here’s the take-home: since many instances of mental illness can become chronic, learn from your past and stay alert to the thought patterns that tend to get you down. Don’t lose heart. Every relapse is an opportunity to learn how to prevent a future one. You do get stronger.

And: go see your doctor. Seriously, stop making up excuses. Be honest, keep them informed. Next time: my homage to medical professionals.

Recovery Series: Part 1-Getting Past Perfectionism

I have my hands full--and my heart full. A new baby girl, lily's been given a new diagnosis (more on that likely to come), a new job, fundraising, traveling, unpacking and setting up in a new apartment…. will life ever slow down? Maybe not? 

I have many more ideas for this blog as life pushes my brain in different directions of learning, and I want to share it all, but there is never enough time. 

In the meantime, I’ve been sitting on a series about recovery--mostly a personal account of my recovery, but with hopefully some ideas that could be helpful to others on the journey. And I've had a bunch of little nudges lately to put it out there. So here goes.

I’m excited--and nervous--to finally be going ahead with this series I’ve been planning and working on for years. I’ve probably waited too long, but I never felt ready to put it out there. I still don’t feel ready to be honest, but I am learning to fight the perfectionist tendency that has me waiting until I have every wandering duck neatly in a row.

Let me just say from the outset that I absolutely acknowledge that the recovery process is unique to every individual. Still, I’m convinced that someone struggling with illness or watching a loved one struggle can be encouraged and informed by hearing about what worked for someone else. I know such stories from others encouraged me.

I also hope to take some of the fear of the unknown out of the idea of recovery. I remember when I was at my worst point, contemplating therapy and the kind of work it was going to take to recover, and I felt more overwhelmed than I’d ever felt in my life. The task, viewed from the bottom, seems insurmountable. Just remember, you only have to take one step at a time….

Which is how I’ll be taking this series. Until next time,

J.

Look How God Has Answered

Our Answer from God slipped into our arms after a long wait, as gently and quietly as the thaw of ice this spring. Our Answer, our spring Promise baby, spring after the long winter of our waiting.

“It is good to wait quietly for God…” (Lamentations 3:26)

Only You Lord, and only in a book called Lamentations, would put the words “good” and “wait” together. Humans don’t tend to think of waiting in terms of “good.”

There was first the wait for healing, as my brain and our family and our marriage first rested and then grew strong again. Then the silent pain of unexplained years of infertility. Finally the expectant wait of gestation, with its joy and its impatience. Then two weeks of false labor. If waiting is good, then we have had our fill of good!

But when our Answer came, she came in a great gush of power and joy. Barely two and a half hours of intense contractions, ten or so minutes of willing my body to hold the baby a little longer and not to push in the car on the way to the hospital, and maybe two minutes of pushing while Daddy’s sure hands guided, and she was in Daddy’s arms and then mine, her warm slippery body finally pressed up close to my heart.

And then.... Look, look, look. Look at those wet, cupid’s bow lips. Look at those slate-grey eyes. Look at that perfect nose. Look at that copper hair. Look, look at how one ear is just a bit different than the other, look how every fingernail is perfectly formed, look how her toes spread and her legs cross and her elbows dimple when they bend and her skin goes quickly from grey to pink and she sneezes and looks and looks and looks back at us. Look, look, look how God has answered!

“The world seems so different when you look at a baby,” says her aunt one day.

Indeed it does. Her lips, how they flicker with emotions that change like light on water. Each one slips away and the moments slip on too, the precious moments I will never have again with this little being that has inexplicably been entrusted to me. And after all the waiting, I just want time to stop and wait for me to catch up and catch on to what a wonder it is to be holding this fresh new being, this Answer straight from God.