Which Way From Here?

Sometimes treatment moves along at a snail’s pace – or even seems to go backward

When I began writing this blog five years ago, my son, Blake, was 14 years old and had recently refused treatment for his Obsessive-Compulsive Disorder (OCD). He’d had a relapse over the previous school year and, despite access to terrific treatment from specialists in Exposure and Response Prevention (ERP), he ultimately wanted to do it his way.  I started writing as a way to express what was going on in my head, to document what was happening, and to sprinkle in stories of being an OCD specialist while living at home with OCD.

As time passed, my writing shifted. In many recent posts, I’ve focused on the depression that settled in over Blake, causing my hubby and I to make the decision to ask him to defer enrollment in college so that he might take care of himself and gain some skills. We entered therapy as a family. First, Blake refused to participate, and he launched into 18-year-old sized tantrums – turning over the belongings in his room, slamming doors and shutters – each time we introduced a new expectation that was meant to move him toward improved functioning. Finally, he came to treatment as a participant and even started meeting with the therapist without us. I’ve documented his struggles, our struggles, and his progress.

Now, Blake Turns 19…

In about a week, Blake will turn 19-years-old. I haven’t talked much about his OCD lately because we’ve mostly been dealing with depression. Blake’s sleep schedule became greatly dysregulated at the end of tenth grade. He sometimes slept until 10 at night; he was up until 3, 4, or 5 in the morning. Over this past year, he’s been awake all day most days. This has mostly been due to my waking him each morning if he doesn’t get up with his alarm. It’s something we agreed on with his therapist: no sleeping all day in this house; if you don’t get up on your own, we will wake you up. But that last hurdle, getting up on his own and staying awake, has been a challenge. Sometimes he does it. Sometimes he does not. In recent weeks, there’s been a slide backwards. He hasn’t gotten up on his own, and he falls back to sleep all over the house for great chunks of the day.

In our most recent therapy session, I joined Blake and the therapist and we focused on where things are at. Blake was dug deep into his position that “nothing” will work and, yet, he was unwilling to try anything new. Top that off with an essential element: Blake does not really want to accept that anyone else might know better than him and what his head is telling him. His brain tells him he’s a worthless screw-up and that it’ll never get better – and he listens to it. I will vouch that this young man is not worthless in any sense, but many steps forward that he has taken have been with pressure from others. I cannot recall a moment where he has honestly said, “I need help and I’m willing to allow others to walk me through this.”

Pivotal Moments

I watched as Blake’s therapist, a longtime specialist and pioneer in OCD treatment, dug in himself. I could see the struggle in him as he could see the road my son is headed down. He pointed out the direction Blake might be going in his quest to continue to do it Blake’s way.

“Blake, my sister’s mental health issue was destroying her life. We begged her to get treatment, to do it another way. But she continued to choose to do it her way…and it killed her.” I could sense the anguish in the therapist’s voice as he shared his personal story of losing a family member to refusing to get proper help. It’s kind of amazing when you reflect that the professional in front of you is a human being.

He continued, “It’s clear that coming to therapy once a week isn’t getting you to where you’d like to be. It might be time to think of doing something more. It might be time to think about residential treatment for OCD.”

“How would that help?” Blake asked. “They’d just be doing it for me.”

“It would help to have therapists and counselors and staff around 24 hours a day to help you learn to live differently.”

“It wouldn’t work. They’d just be forcing me.”

“You’re right. It wouldn’t work if you went into it with the same attitude you have. It wouldn’t work if you continued to see it as something others were pushing you to do. It might work if you were to recognize that doing it your way isn’t working and if you surrendered yourself to something new. You’d have to see yourself as worth it.”

“I’d feel like a freak,” Blake said quietly. “If I was so desperate as to go live in a hospital, I’d feel like a freak.”

“Blake,” I broke in, “if J were to check into a residential program for what he’s going through, would you think he was a desperate freak, or would you be proud of him for getting the treatment you know he needs?” I asked this in reference to someone close to us Blake worries about.

Without a pause Blake noted that he would be proud – and he made the connections.

“I guess I have some thinking to do,” Blake acknowledged.

An OCD Program?

You may have noticed above that Blake’s therapist did not suggest Blake consider going into a residential program for depression. He suggested a residential program for OCD. He suggested it at least twice (I didn’t include all the dialog). Why an OCD program? We never got to talk about it, but I think I know why. I believe the therapist thinks that much of what is going on with Blake can be traced to his OCD. Blake has an extremely low tolerance for uncertainty or discomfort of any kind. He actually shuts down and becomes unmovable when faced with an anxious moment. He prefers to live in a comfort zone according to rules he has determined are acceptable to live by (but that are actually dictated by OCD). He’s been living a life of religious rules for over six years that has been driven mostly by fear rather than joy and meaning.

Blake has something to think about. How much thinking he is doing, I do not know. I know he got himself out of bed for four days in a row – and he felt proud. And then he sunk into three days running of not getting up on his own and falling asleep for large chunks of time. He is mere weeks from leaving our home to finally beginning college in another state and living in an apartment with three roommates he will not know. If he elects to go to a residential treatment program, what would become of that?  For now, I don’t know. I don’t know what happens if he goes to college, can’t get out of bed to go to school, and returns home. I don’t know what happens if he falls backward enough not to be able to leave home. Like all things that are in the future, I am waiting to see. I’m hoping for the best, but not deceiving myself in acknowledging that this just might not go well.

 

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4 thoughts on “Which Way From Here?

  1. Dr. Sarah Haider

    I’m hopeful Blake will be able to access the help he needs. Thinking of your family!

  2. Ah, that ‘ol uncertainty that we all need to accept. So hard! I have high hopes for Blake and hope things go in the right direction for him. One day at a time – guess that’s all any of us can do?

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