by Laurie Gough
That one small decision made me feel like I’d just turned my face toward the sun on a spring day. We won’t be alone any more. Wakefield, somehow, could help us. I thought of how often I’d felt lucky to live in Wakefield. Sometimes walking home late at night beside the river, after hearing music at the Black Sheep or at the open stage at the local pub, I’d stop to watch the moon wandering across the sky above the water. I’d stand there letting that bright moon gallop me back over the years to recall that I’d always dreamed of living in a place like this: where the wild woods you tramp through sustain you to your very core, where you can dive deep into a cool river at midnight when you’re hot, and, best of all, where everyone you pass on the street smiles and says hi. I’m so lucky to live here, I always think, so lucky that after all my traipsing around this place found me.
We won’t be alone any more. It was that singular thought that let me sleep that night.
CHAPTER 23
I woke up too early the next morning. Out in the garden I heard chickadees, their normally jokey chirping now sounding a little shrill. I was trying to lie still so I wouldn’t wake Quinn downstairs. His OCD meant it took him hours to fall asleep at night, and he was constantly exhausted. But then I heard a shuffling noise and saw that Quinn had crawled into bed beside Rob. I went over to cuddle him while he slept, wondering what would happen now that his Olympics dream had died. I remembered it was Saturday. I ventured to say, “Hey, I want to buy carrots from the Czechoslovakian goat herder at the Tailgate Market this morning. Then we should go to Chamberlain’s Lookout for breakfast!”
To both my and Rob’s amazement, Quinn pumped his fist in the air. “Yes!” he said, still with his eyes closed, smiling.
“Are you going to order the Little Lad Special?” I asked, barely believing what was happening.
Quinn didn’t reply. He still had his eyes shut, half-asleep. I started tickling him. Then Rob began tickling him, too. Quinn started giggling. I hadn’t heard this kind of giggling come out of Quinn in a long time. Had he dropped his obsession? Was he back to normal? As the tickling continued the giggling started subsiding. Gradually, a look of unease began to cross his face as his brow wrinkled. Then his body stiffened. No more giggling. I asked him again what he was going to order for breakfast, even though I could see we probably wouldn’t be going after all. With his eyes still shut, he shook his head, his expression contorting like he was holding back a great tide of pain, the torment clearly etched all over his face. It was as if the OCD monster was just now waking up, getting ready to take over again. Before that, for a few precious moments, we’d had the old giggly Quinn with us. Now that boy was gone again.
It was probably the single saddest moment of my life.
I couldn’t help myself. Tears stung my eyes. I ran downstairs and rushed outside in my pyjamas, my bare feet slapping the cold smooth rock of the pathway to our house. I fled to the car. I got inside and closed the door. Great heaving sobs started to shake my body. The world felt dangerously futile, like a chasm was opening in the ground and I might plummet headfirst and never stop falling. Between gulps of crying I started pleading, “I just want my boy back. I just want my boy back.” And also, We need help. I howled those words over and over. I repeated them so many times and sobbed so much that after a while, I had nothing left inside me.
I tried to pull myself together but after breakfast I found myself fighting tears again as I washed the dishes. I looked over at the dining room table, at Rob trying to get Quinn to do some exposure exercises that involved drawing. Quinn looked like a pale ghost, completely shut down. I burst out crying. It happened so fast that it actually scared me. Rob immediately got up and told Quinn they should go upstairs. Ten minutes later Rob came down again. I was still in the kitchen, still choking back tears, searching for some frozen bananas in the freezer. Rob closed the freezer door and fixed his gaze on me. His face reminded me of cement, hard and devoid of colour. I’d never seen him look like that. “I can’t help you,” he said at last, his exhausted, glazed eyes full of red. “I have no energy for anything but Quinn.”
I swallowed. “It’s okay. I don’t expect anything. I want you to put all your energy into Quinn. I understand.” My voice sounded like it had escaped from a rusty tin can. I tried to smile as I reached for his arm. Both of us seemed to be stumbling around lately on short staggered breaths. It felt like we were in some kind of war, battling it out in muddy soul-decaying trenches. We need some air, I thought, a Christmas truce, a friendly soccer game against the OCD monster. Couldn’t we make friends with the enemy, even just for a day?
That afternoon Rob left to operate the sound and video at a memorial for a fourteen-year-old girl named India. This girl had recently died of an extremely rare genetic disease in which at the end of her life she was having seizures every five seconds. Although she lived near Wakefield, nobody I knew had ever met her since her condition kept her inside. As Quinn and I worked on some of his exposure exercises, I kept thinking of the girl’s parents. I couldn’t begin to imagine what they were going through. When Rob came home he said that India’s memorial had been beautiful. His eyes looked almost shiny, his pupils dilated. Somehow the death of this young girl he’d never met had deeply moved him.
“Just imagine, in all those months when her parents knew she was going to die, imagine if they’d been told there was a slight chance she could keep living but she’d have severe OCD all her life. Imagine how they’d lunge at that chance like it was a miracle, how lucky they’d feel. We still have Quinn and he has severe OCD. He’s in there and we can help him find his way out. But even if we don’t, we still have him.”
We stared at each other. He was right. I thought of the parents who’d rushed their kid with the broken arm into the hospital, how lucky I’d thought they were. I tried to muster up some of Rob’s mindset. All I could think of were the girl’s parents. If I was dangling on the edge of hopelessness, how must they be feeling?
I still wanted to reach out to people as I’d resolved the night before but I found myself so depleted that I could barely get off the couch. Sleep deprived and with a throbbing head from so much crying, all I wanted was for this hell to be over. Outside, I could hear crows cawing and, in the distance, the sound of kids playing down the road.
A meteorite. Why couldn’t a meteorite hit our house and let this miserable new life of ours be finished within a flash?
Should I put something on Facebook? I wondered. Should I tell people about our situation that way? At that moment I thought it should be renamed Fakebook. If you wonder how your own life is going you just go to Fakebook to find out. Oh, good, I look so happy in these photos. I’m having so much fun. My life must be fantastic! I decided against using Facebook to tell people about Quinn.
That night we had to cancel our plans to go to Anna’s house for a spaghetti dinner. There was no way Quinn could manage it. Instead, we made spaghetti ourselves at home. After dinner, Quinn ran up and down the stairs twenty-two times in eleven minutes. “Is that an OCD thing? Training for the Olympics or something?” I asked Rob. “Yep,” he said, not looking up from his book. “But at least he’s getting some exercise.”
Email, Sunday, October 27, 2013
To our friends,
I’m not sure how many of you know that Quinn has developed severe OCD (obsessive compulsive disorder). It started out mildly in the spring but, disturbingly, has been ramping up in the last couple of months. It’s a neurological disorder and in Quinn’s case it’s extreme and getting more so by the day. He has stopped going to school and can no longer live a single OCD-free moment during his waking day. Rob (who is proving to be much stronger than I am in this, absolutely a rock of determination) mentioned the other night that we’re alone in this thing, maybe because we don’t want to scare people. It’s pretty freaky to see someone who such a short time ago was a happy-go-lucky, bike-riding kid now barely able to walk down the road or even talk. So I’m
telling you this because we need help and I don’t even know what kind of help. If people could visit once in a while that would go a long way in lifting our spirits. Rather than try to explain it, I’m going to insert the note I just wrote about his morning today.
“Quinn is still lying in bed at 10 a.m. I open the curtains and climb up the ladder of his bunk bed to see him. His eyes are shut but I can tell he’s awake. He’s immobile. I move a teddy bear out of the way and he makes a distressed noise. I put it back exactly where it was. I try to get him talking, ask what he’d like for breakfast. No answer, no movement. Finally, he says quietly, in a robot voice, “Close curtain. Curtain close.” (If he says the words backward it erases it.) All I can do is close the curtain and walk out of the room. Rob gives it a try and comes out telling me he thinks Quinn just needs to wake up on his own time now. Ten minutes later, Quinn emerges and throws himself down crouched on the living room floor. When I try to hug him he backs away looking terrified. “What?” I say. “I can’t even hug you now?” He shakes his head. I poke his toe and say jokingly, “Can I touch your toe?” He yells, “No! Touch again. Again touch.” So now I have to touch his toe to “erase” what I did. Only it turns out that I don’t touch it in exactly the right place that I touched it before so he panics and does this high-pitched distress call until I find the right place on his toe. “So I can’t even hug my own son?” I say. Rob tells me I can’t react emotionally or it will make it worse. I feel like running outside and shouting HELP US to the world. But what can anyone do? Saddest of all, he’s supposed to be at a pumpkin carving party down the street right now. The real Quinn was excited about it and of course wanted to go. But the OCD monster inside his head would never allow something like that. And forget about Halloween. What will we do Halloween night? There’s no way he can go out trick-or-treating and he’d never want the kids to see him if they came here.”
We know that the real Quinn is still in there somewhere. We get to see him sometimes. But I would give anything in the entire world to get my son back for good.
So now you know why you haven’t seen Quinn or even us around. But if you’d like to drop by, we would love it. We need our friends and we need Quinn back. There is nothing more important to us in the entire universe than getting our son back to the happy kid we used to know.
Love,
Laurie
P.S. Feel free to forward this since I’m so tired I’m probably forgetting a bunch of people. BTW, the attached photo was taken by a passing photographer in Guelph in June. When I look at it now I see he’s doing an OCD thing (touching his dead grandpa’s watch — his grandpa dying is what triggered this whole thing). At the time, we had no idea touching the watch meant anything and just thought it was nice how much he liked the watch as a way to remember his grandpa.
If only it had all stopped with touching the watch.
CHAPTER 24
After writing that letter, everything changed.
The phone began ringing almost immediately. Emails flooded my inbox. An astounding outpouring of love and support began to flow into our lives from friends, neighbours, and the larger Wakefield community. My neighbour Christine from down the street, the mother of two of Quinn’s oldest friends, was completely shocked and distressed. She said she had no idea any of this was happening. She told me she’d do anything at all to help us, including talking to the school principal. Another neighbour, a naturopath, told me she’d help me with remedies. My friend Stephanie in British Columbia who is a doctor called to say I should call her whenever I couldn’t sleep, even if it was 3 a.m. Emails came from all over. People I didn’t even know began writing to me, friends of friends who had experience with OCD. There was even talk of raising money for us with a local art auction, which we declined, but it was a lovely gesture.
I realized I should have written that letter much sooner.
Tina’s email was especially insightful:
Dear Laurie,
Please don’t be mad at me for saying this, but absolutely do not help Quinn with his OCD rituals. Helping him confirms that the OCD is in charge and should be obeyed. I know it’s really hard to see him freak out like you described in your letter but you must not enable the OCD. It’s normal for a parent to help a kid get over his anxieties like that, so your reaction is totally understandable, but people with OCD shouldn’t be handled that way. It will aggravate the behaviour. Do you remember how strong and matter-of-fact your mother was when she spoke to him? How brutally honest? And how well it worked? He needs that kind of strength. That kind of head-on fierceness. There’s no wincing in the face of OCD. It can smell fear. I’m really sorry that I didn’t tell you sooner. I thought you knew already. I know you’ve done a ton of research. I have total faith in you and Rob. I know you guys will make the right decisions. It’s going to be really hard, on everyone, but I know you guys can get through it. And maybe one day your story will help others, too. Let me know if there’s anything else I can do.
I love you!
Take care of yourself too! Ganbatte!!!
Tina
I knew Tina was right about not kowtowing to Quinn’s OCD bully. With his OCD so much worse lately, I’d been wearing down, often too beat to fight the bully myself. But now I had a new resolve. Writing that letter felt like I’d released this secret of ours out into the world, freeing it from our sad little home of three. Now our secret had wings and was flying through the community at lightning speed. A lot more friends knew and somehow that made everything feel easier.
Also, I didn’t realize it at the time, but writing that letter was a tipping point. Before the letter, we had no idea how far down Quinn would go. Would he end up like the kids we’d seen on videos of a place called Extreme OCD Camp? Would he have to be institutionalized? But after that letter, somehow everything felt lighter in our house. The scales had tipped in our favour. Even if all people did was send a simple two-line email saying they were thinking of us and sending us love, it made a difference. I’m not sure how this worked but somehow I thought it would ultimately make a difference to Quinn, too. Perhaps it was the ripple effect. The best part was something I hadn’t even anticipated. People started coming by and, as it turns out, the OCD monster hates visitors.
The very next afternoon, our neighbour Christine sent her son Liam over to play with Quinn. Liam was two years younger than Quinn and the two of them had been friends since Liam was a toddler and just learning to talk. Liam was always talking. And smiling. In fact, I’d never seen another human smile so much in my life. He never failed to brighten my day when he came to our door. When he came over that afternoon he didn’t seem to care at all that Quinn was acting a bit “unusual,” as he called it. He was just happy to play with his friend. “Hey, Quinn, that’s funny how you’re scrunching up your fists like that. Isn’t it hard to pick up your cars?” I pretended not to listen as I read a magazine. This was exactly the kind of thing I was hoping Liam would say. Quinn had to loathe his OCD. He had to be embarrassed by it, see how much it interfered with everyday life. Quinn shrugged. “Yeah, kind of hard.” He picked up a toy car between his clenched fists and the two of them started laughing. Ten minutes later they were out on the driveway, Quinn on his unicycle, Liam on his bike. I could overhear Liam talking. “I guess it’s kind of hard to ride your bike when you can’t open your fists, huh, Quinn? Your unicycle is perfect for you! No hands needed!” It was as if I’d been feeding Liam lines. He seemed to have a knack for saying exactly the right thing to someone with OCD. The part that made my heart soar more than anything, though, was that they were having fun. Quinn hadn’t had any sustained fun in a very long time. If only I’d invited Liam over here earlier, I thought.
That evening, our friend Brant showed up with a pizza. Quinn and Brant had a special loving relationship that involved stomping on each other’s feet. Brant, Quinn, and I were in the kitchen while I tossed a salad. Quinn was drinking a glass of mango juice with his fist
s clenched. This made holding the glass an unwieldy manoeuvre.
“So, Quinn,” said Brant tentatively, his big brown eyes squinting sideways, “I’m kind of wondering, what’s with the fists?”
Quinn looked at me, hoping I’d answer for him. I shrugged. “Magic bubbles,” said Quinn. Under his breath, he whispered, “bubbles magic.” He was becoming adept at erasing his words without people noticing.
“Magic bubbles?” asked Brant. “What are magic bubbles?”
Again, Quinn looked at me, willing me to answer for him. “You tell him,” I said.
Quinn inhaled a deep gulp of air, gearing up to say more than a few words at a time. This is exactly what we needed him to do, to act like a normal person again. “I’m holding on to magic bubbles. If I let them go, I won’t win the eight-hundred-metre race in the 2024 Olympics.” After seeing all those videos of black athletes winning the hundred metres his obsession had switched to the eight hundred metres. Some white guys actually win that one apparently.
Brant tilted his head, thinking about this. “Interesting.” He rubbed his goatee. In his slow, thoughtful way of talking, he said, “I’ve heard a lot of athletes talk about how they got to the Olympics, how they won races. Training, mostly. I don’t recall any athletes ever mentioning anything about … magic bubbles.”
Brant’s words hovered in the air. Nobody said anything. We all seemed to be taking turns looking at each other. I took a sip of wine. Suddenly, Quinn busted out a rip-rattling laugh. He started laughing so hard he doubled over. Brant and I joined him. I couldn’t remember when anything had seemed more hilarious. Quinn seemed to think so, too. He just kept cackling with laughter. Later, I’d realize it was one of those openings, a crack in his OCD armour when he caught a glimpse of the absurdity behind it all.