Remember the movie What Dreams May Come? I was always struck by the power of Chris journeying through Hell to bring someone he loves back. That has been an image of the highest form of love for me since I first saw the movie.
I never thought I’d have the chance to make such a journey myself.
If you ask the parent of a kid with OCD what they said when they first got the diagnosis, almost to a person the answer will be, “Have you seen my kid’s room? They CAN’T have OCD!”
This is because OCD is so terribly misunderstood in our culture. It’s thought of as that disorder that people have when they want things to be clean and organized. “That’s the handwashing thing, right?” we hear a lot.
Ordering and hand-washing are often part of OCD, but they are far from the totality of the disorder.
A fuller picture would have to include how debilitating it can be–how it can hijack, not only a person, but an entire family. It would have to give weight to the fact that hours and days of a person’s life can be lost to obsessions, and compulsions. It would have to include how illogical it is…. How the obsessions that can take over a person’s mind don’t make sense even to her, and yet she can’t ignore them.
It would have to include how terrifying it is when aggressive obsessions or sexual obsessions take hold…. The terror of being a person who believes that you could kill someone just because you didn’t perform a ritual perfectly, or touch something exactly right. The sticky images that get stuck in a person’s head of her loved ones perishing in a fire. The belief that because you thought that someone would die, that they will.
It would have to include the mental anguish that can make a person want to die to escape the pain.
This is the Hell that is OCD.
I stood in the road one day after my daughter tried to run away. I was doing all I could to be an immovable force. All she knew was that she wanted to escape.
When you are 11 and you want a feeling to stop sometimes the only words you can come up with are, “Mama, I just want to die.”
And then, because OCD is OCD those words can be followed by terror. Terror that because you said them, because you thought them, that you will die.
This happened to my daughter over and over again.
We arrived at IOP after over 4 years of treatment. For so many people the journey of OCD treatment includes seeing counselors and psychologists who don’t know enough about OCD to treat it skillfully. We were lucky that pretty quickly into our journey we found an expert and he kept seeing us each time OCD crept up to a level that was unmanageable. Over four years in, the cycles of crisis were coming closer together and he leveled with us–this is going to need Intensive Treatment. You should consider a Residential Treatment Facility. That took our breath away.
A few months and another round on the crisis cycle later and he said, “She could be part of our Intensive Outpatient Program. I think that could be our best shot.” And so we signed on.
Andy was gone on a boat when I formally told Dr. Wiegand that we wanted her to attend the IOP. The IOP was kind enough to wait for him to return before my daughter started attending. We determined that the drive from Oak Harbor to Seattle was too difficult to do every day on top of the exposure homework my daughter would need to do. Dr. Wiegand and a social worker on base helped us to figure out lodging options. In the end we split time between two facilities that serve families enduring medical treatment.
It turns out, there are a lot of logistics to nail down before you start a journey to hel
If you pressed me to sum up IOP in one phrase the words would be “Upside Down World.” The first week we were there kids were saying swear words and sex organs out loud multiple times a day as part of their homework. Kids were asked to do homework and tests in highlighters, to break rules, to lie, to eat food off of toilets and shower floors, to forego handwashing. Kids watched horror movies, and scary TV shows.
We began celebrating the oddest things, “My daughter went 5 days without showering this week!” We all cheered. Then we looked at one another and laughed.
We deconstructed our parenting. To a person each of us had seen our child go through intense distress and as a parent all you want to do when your child is in intense distress is to make it go away. Unfortunately, often our attempts to do that make OCD grow bigger instead of smaller. We learned to withhold reassurance. We stepped back and watched our kids, many of whom were screaming, yelling, and sobbing for extended periods, contain their own explosive emotions.
We unlearned what all the parenting experts had taught us and what all of our maternal and paternal instincts had led us to do for so long.
And our kids? Our kids fought like hell. They did an assessment at the beginning of the program and ever 4 weeks after, that allowed the therapists to essentially catalog their worst fears. Then, they methodically faced them. Each child would take on the things that caused the most distress, one by one, and learn to sit in the discomfort to “Ride the Wave,” as the therapists explained it.
I don’t know many adults who have catalogued all of their fears and methodically faced them. But my 11 year old did.
Don’t get me wrong, the IOP program tries to make this process as fun as they can. We spent large parts of every day clapping and even laughing. OCD is absurd and laughing about that absurdity can be healing. The kids in the program realized they weren’t alone and they realized they had other people fighting alongside them. The parents found the same to be true.
I realized quickly I was part of an elite club–the club of parents who HAD moved heaven, hell, and earth to help their child find healing and wholeness. The club of parents who would literally follow their child to their darkest hell and then journey out of that darkness beside them. It’s important to note that my “Where Dreams May Come” analogy breaks down in a significant way. In the movie Chris journeyed to hell and brought his wife out. In this OCD IOP treatment reality, parents journey with their kids to hell and then watch THEM claw, and scrape, and crawn, and eventually stand up and walk out on their own. We are merely companions.
In a few hours, my daughter and I will go to our last day of treatment at IOP. My daughter will listen to the words of those who have traveled with her, and those who have been her guides: the amazing therapists who taught her the skills, who sat with her, cheered her on, and helped her believe that within her was a force so powerful that it could shout down even her most relentless demons. Then she will take us on a journey. She will walk us through what she has experienced over the last 13 weeks.
We’ll eat cake. We’ll laugh a lot. And then we’ll go home.
I can’t tell you what an honor it is, what a JOY it is, actually, to emerge from this day having journeyed with my daughter to the darkest regions of her mind. I can’t tell you how proud of her I am–how teary, blubbering cliche Mom I am when I look at her.
And if I’m honest, while I tell you that, I’ll also tell you this. I’m proud of myself too. I am proud that I was willing to journey to hell with my daughter. I am proud that I was willing to unlearn what I had always known about parenting. I am honored to have put syrup on my hands, and read scripts, and stood beside her as she fought each and every one of her fears.
We are warriors she and I, and today we taste victory.