Blake summons me to the sofa where he is sitting and watching a video on YouTube. As I approach, I think he’s going to show me a video or something he finds interesting therein. As I lean in, though, he points not to the video, but to a banner running along the bottom.
“Are you OCD? Take the quiz to find out.”
It’s clearly not a true mental health screening. It’s another one of those things that pokes fun at how much you notice things that aren’t neat and orderly. It’s one of those quizzes that sets me off sometimes (See “Just a Little Rant“).
“Ugh,” I note. “I’ll bet that ticks you off.”
“Actually,” he says, “I find it kind of laughable. It doesn’t really bug me.”
“No. In the past that stuff really used to bother me,” he recalls. “Now…now I look at it as though they’re just ignorant. What I mean is, I don’t think that this is done with an intent to hurt people with OCD. I think about intent. I like to think that they just don’t realize that it can be hurtful; they just don’t realize what OCD is really like.”
Now, I tend to be a crusader for OCD education, and quizzes like this definitely get under my skin because they ignore the true pain that OCD can cause . Our family knows that pain – and nobody knows it more intimately than Blake. While part of me never wants to see these things, perhaps my son has developed a way of coping with them that is positive for him. He attributes it to people not knowing and he considers it without hurtful intent. One might say he’s giving some folks a free pass, yet, at the same time perhaps it’s better that he doesn’t give it a lot of space in his head. I just might learn something from him.
This week I attended a daylong community OCD event. The venue was completely full, there were terrific speakers, and there were lots of opportunities to connect. At the end of the day, there was a gathering to re-cap and ask questions. One parent stood up to ask a question that grabbed my heart and my attention.
The parent asked about a topic that is near to many of us who have young adult (or almost-adult) children struggling with OCD (or other mental health issues). That is, the parent wanted to know how to motivate one’s older teen or young adult to get serious and use the treatment being offered to them. I immediately felt a kinship to this parent. I wanted to reach across the crowded room and say, “Yes, I want to know that, too. You are not alone.” Yet my heart already knew the answer that was about to come.
A therapist at the front of the room took the question and tenderly noted, “I notice that many times parents want desperately for their child to get better. Yet that seems to keep the child or young adult from wanting it for themselves. They have to want to get better more than their parents want them to get better.”
And there it was. A simple truth. We parents can want what we want for our children. We can lead them to treatment. We can urge, press, plead, make deals…but we can’t be doing more work than they are. We cannot be more invested than they are. We have to want their recovery LESS than they do.
My heart feels heavy for just a bit as I hear what I already know. And my heart aches for the parent on the other side of the room. How do we do this? How do we care less when they don’t seem to care much at all (at least on the surface)? I think the answer is that we have to find a meaningful life for ourselves in spite of their mental health struggles. I think that we have to back off on the pressure and put faith in their ability to decide when enough is enough. And we have to have the courage to not pick up the pieces and make the consequences of their struggle easier – they have to be doing much of the hard work.
This is simple, in theory, but difficult in practice. As parents, we are programmed to respond to our child when we see them suffering. We are oriented toward providing comfort and to removing obstacles. With OCD, anyway, doing our job as parent may be presenting them with the difficult path toward healing, and waiting nearby allowing them the struggle of coming to the decision that there is a better life to be lived.
I’m passionate about Obsessive-Compulsive Disorder as a cause. I feel strongly about getting the word out and supporting this community – those who suffer with OCD and those of us who love someone who has it. I care about it so much that sometimes I take those clueless OCD humorous remarks personally.
Recently, I began a free support group in my community for adults with OCD. Running it is one of the highlights of my week. Watching the close community that is rapidly developing in that room warms my heart. So, of course, I want to promote the group so that others can participate and benefit, and I made a flyer. Then I excitedly sent the flyer to every therapist and psychiatrist I could think of.
BUT I MADE A MISTAKE
I put the wrong phone number on the flyer. Somewhat embarrassed, I asked everyone to delete the flyer and I sent out a new one. And I apologized for my error and for the multiple emails. Then I received this:
“No prob. At least we know you are not OCD! If you were, you would have read it 5 times before sending!”
This comment came from a therapist with many years of experience. I immediately felt the heat rise in me. I wanted to write back and school the therapist about the ignorance of that comment. I thought of snappy comebacks. I wanted to write, “Or maybe I am OCD, but my compulsions are something different from checking…” And then there’s just the phrase “you are not OCD.” Seriously, a person is NOT OCD. They might have OCD. I want to tell the therapist that, too.
But I Haven’t Said Anything
I haven’t said anything (except to you) because, well, I’m just a little too pissed right now. And I actually would like this therapist to send adults with OCD to the group. I don’t want to alienate people from the cause; I want to educate. So thank you for letting me rant just a bit. For now, I’m going to sit on my response…at least until my blood stops boiling.
“I understand what you’re saying – and I’m not interested.”
Blake is sitting in a chair in the therapist’s office and he’s frustrated and defensive. The therapist has brought up an issue that Blake has long refused to talk about – his Obsessive-Compulsive Disorder. Right now he is insisting that there is no problem. He’s happy with things as they are.
“I like the way I am. I’ve been this way my whole life and it doesn’t get in my way,” Blake says.
And, at the present time, this is true – for the most part. In the past, Blake’s OCD
has GREATLY gotten in his way. As a young child, his fear of contamination prevented him from getting work done because the pencils might have been touched by other children. Handball with the other kids was out of the question. A dip in a lake where people might have urinated? Never. His moral scrupulosity in middle school left me standing at the after school pick up spot for half an hour after all the other parents and children had left. Blake was in the classroom clearing every tiny piece of trash off the floor in response to his teacher’s request that everyone help pick up the room. Despite her repeatedly telling him he had done enough, he would not stop. Of course there was also the religious scrupulosity in high school. He would get stuck in a loop saying prayers over and over, trying to get them perfect, and this frequently made him late to school.
Fast forward to present day. Blake is eighteen, hoping to attend college next year, and working to combat depression. He still does little things that are OCD behavior, but he wants to leave them alone. It’s not a big deal, he says, that he washes his hands immediately if he touches money. So what if he washes his bed sheets because a piece of tissue that brushed up against the dog lands there? It’s not a problem for him if he repeats a prayer a time or two. And he cannot understand why his therapist is raising it as an issue at all right now.
“I don’t mind that I do things this way. Why are you bringing this up now?”
When You Have a History Like Yours…
“Blake,” says the therapist, “you’re right. The things you do now are not a big deal. Here’s the thing: if all you ever did was the things you do now, it would be fine. When you have a history like yours, though, where OCD has taken over your life, it’s downright scary to act like it’s not an issue.”
“I don’t understand. Are you telling me I’m not fixed?”
“It’s not a matter of fixed or not fixed. It’s about staying healthy. People with OCD who do the best after treatment work hard at staying healthy.”
“I understand what you’re saying – and I’m not interested.”
“Instead of rejecting this outright, I’m suggesting you consider the possible benefits to you of doing things to ensure your OCD doesn’t grow,” says the therapist.
“If you guys thought I was so sick, why didn’t you tell me before now? Has this all been a ploy to get me to do exposures?” Blake is downright angry.
“Blake, nobody is saying you are so sick. It is concerning to your parents and I that you accept your compulsions as they are and that you aren’t willing to entertain doing what it takes to protect yourself. Your attitude puts you at risk for relapse and we all want you to start college in the best way possible.”
I sit uncomfortably in my seat, taking this all in. We have tiptoed around Blake’s remaining compulsions for some time now. Getting him out of bed and functioning seemed a more pressing goal. However, the OCD has been the proverbial elephant in the room, mostly because it has been so under the radar and because Blake has been insistent on not looking at it. The therapist is right, though. In my experience treating OCD, my patients who stay healthiest remember that they have OCD and do maintenance work to keep things that way. The ones who want to pretend that it never happened or that it can be ignored tend to relapse more frequently. My son is in the camp of wanting to pretend it’s not there. He leaves the therapist’s office furious.
“I’m Tired of Being Weak and Scared”
Blake is argumentative and demanding on the walk to the car. He tells me that he realizes coming to therapy was all about trying to get him to deal with his OCD. I explain that this is definitely a part of it, but not the only reason, which I know he knows. I am concerned, I tell him, about his unwillingness to take a look at how it might benefit him to acknowledge his OCD and do maintenance work.
And then the tears come…
“I’ve been weak and scared my whole life,” he says. “I’m tired of being weak and scared. And now I’m crying, which proves how weak I am!”
At this point we can actually have a truly connected talk. My young man is not weak. He may feel scared, but he is actually one of the bravest people I’ve ever met. He has stood up to OCD demons frequently in the past. It was tough and exhausting work. I understand his reluctance to revisit that, which is maybe why it feels better to him to allow some rituals to hang around. At the same time, it is important that he understand what risk he might be putting himself at if he maintains this approach. This, I believe, will be his work in the weeks and months to come.
We are home from our family vacation. Michael is back at college and Blake, the hubby, and I returned home a little over a week ago. I noted in my previous post that Blake was actually enjoying things we did on vacation. In fact, the rest of us had been tired and had been ready to call off a trip to observe and swim with manatees. Blake told us how it had been a dream of his to participate in this activity. Blake, for whom depression is ever-present, rarely shares that he has any dreams, so we absolutely had to rally and make the adventure happen.
I am happy to follow up and share that the adventure was unbelievable. If you ever have the opportunity to float in the water with these gentle giants, I highly recommend it. We went out in the bay with a well-informed guide and captain. They taught us about manatees and what we could and could not do. After learning that we were not to touch, pursue, or dive after the manatees, we got quietly into the water where several were in the area, and we did a “dead man’s float.”
After a bit of time, a manatee surfaced under my feet and began to swim the length of my body. It was exhilarating, and it took everything in me not to erupt into a fit of giggles. Our little group was very patient and several manatees took interest in us, nuzzling their faces into ours and basically hanging out with us for over an hour. Our captain told us that our experience was not the norm – we had been given a gift.
When the day ended, and we changed back into our clothing, Michael, the hubby, and I thanked Blake for asserting himself. The manatees were a highlight of our time together. Blake agreed. For him, the boy with OCD who used to stay out of the water because it was contaminated, it was a dream come true. In the fog that mental illness has enveloped him in over these last few years, it was one more clear day.
The OCD in the Family family is on vacation. We are currently in Florida, in a small town on the Atlantic Ocean. The hubby, Michael, and Blake are in their rooms sleeping off the frenzied pace of the last five days. I walk the coast alone in what is unseasonably cold weather, but my heart is warmed by what I’ve experienced in my younger son on this journey.
Michael, our older son, has always enjoyed travel and is up for new adventures constantly. Blake, however, is a different story. He is usually extremely uncomfortable out of his usual environment. For as long as I can remember, he’s felt overwhelmed by new places, sounds, foods, smells, people, and, well – you name it. Compound this with Obsessive-Compulsive Disorder and, in the last two plus years, major depression, and you have a recipe for a very challenging family vacation experience. We’ve gone on many a vacation where Blake stayed behind in the hotel room or the car, or only went out with us after substantial begging (usually pleading to go back to the car to wait as soon as we’d allow it).
This Time, It’s Different
This vacation, however, has been different. Blake wasn’t particularly interested in going on this vacation. As usual, he came along because we were going. Then something started to happen that none of us could have predicted; he started to enjoy himself.
I first noticed it when we were at Epcot. If you’ve never been to this Walt Disney World park (as we never had before), it consists of a Future World (East and West) and a World Showcase, which features different countries around the world in street scenes, attractions, and food offerings. After a long, cold day in the park, I began to walk more quickly through some sections of countries in the World Showcase. Blake slowed me down, though.
“I don’t know if I’ll ever make it to all these countries,” Blake said. “I want to see everything I can while we are here.” Then he proceeded to walk down every corridor and alleyway he could find.
The next thing I noticed was that Blake picked out a meal for himself at the Kennedy Space Center. Blake, whose OCD often centers around food choices (or, should I say, problems with the food choices around him), at first said he would forgo eating anything at the Center’s cafeterias. He would wait and eat food he was comfortable with back in the car. The next thing I knew, he had a tray filled with food, and even a dessert of astronaut ice cream. He joined us at the cafeteria table and ate, something he hasn’t done in years.
Last night, he had a long discussion with the hubby about all the places in the world he would like to see. What? Blake wants to see the world? He named off basically every country in the world – the more different from our country, the more he seemed interested.
“What about traveling for leisure?” the hubby asked him.
“The thing is, I’m so uncomfortable traveling, I couldn’t relax.” Blake answered, “I may as well go somewhere I can see things and learn about different cultures.”
Manatees in the Morning
This morning, as Michael, the hubby, and I ate breakfast (Blake was sleeping in), we decided to call off our manatee excursion for the next day. It was too far away, we’d have to leave too early, and it was just too cold for swimming in rivers. Plus, we’d been moving at breakneck speed for several days. It would be nice to have one more leisurely day.
We took it as a given that Blake wouldn’t mind the cancellation. So the hubby went off to call the tour company and I took a breakfast tray in to Blake.
“Dad’s cancelling the manatee tour and swim for tomorrow,” I told Blake. “That way we can take it a little easier.”
Blake’s face contorted into a pained grimace.
“Are you reacting to the manatees?” I asked.
“Did you really want to swim with them?”
“More than anything,” he said, “but I can wait…if that’s what everyone else wants.”
“Let me see what I can do,” I said, as I bolted out of the room. It just rarely happens that Blake wants to do anything, and I wanted to reward his speaking up. I caught the hubby on the phone talking to the tour operator. I waved wildly for his attention, then told him what had occurred.
“Well, it looks like we’ll be coming after all,” he told the tour operator.
I went to tell Blake that the manatee adventure was on and the glee in his expression told me I’d done the right thing.
I Don’t Know What’s Going On, But I’ll Take It
I told the hubby how excited Blake was about the manatee tour. He and I marveled over the exciting things happening with our son on this vacation. The young man who normally doesn’t want to leave home, who only wants to read about the world instead of live in it, and who regularly says he dislikes himself and much of the world has had a few positive days where he seems to actually want to be here and to experience life.
Afterward, Blake and I perused the library at our lodging. He marveled over the books and wished he had more days here to sit and read. He supposed one thousand hours might do. As we passed through the hubby’s and my room, Blake shared his sentiments with his dad.
“You know, Dad, I’ve changed my mind about leisure vacations. Sometimes it would just be nice to sit and read a good book on vacation for hours on end.”
The big news this week is that Blake has decided to increase his SSRI (selective serotonin reuptake inhibitor) dosage. Seriously, it’s BIG news. I know. I know. For many on these medications, which tend to be the first line of defense in terms of medication for Obsessive-Compulsive Disorder (OCD), this is just a normal occurrence. Sometimes you go up in dosage. Some times you go down. That’s not the case for Blake.
Blake has been on the same dose of his SSRI since he was thirteen years old (13). He’s eighteen(18) now, in case you don’t know. That’s five years on the same dose. That’s more than two years of feeling he’d be better off dead. More than two years of people begging him to increase his dosage. His psychiatrist has begged, his pediatrician has begged him, his father and I have begged him. His therapist has encouraged him and challenged his reasoning on why he won’t increase his dosage.
“I don’t like being on medication,” says Blake. “It doesn’t help me.”
“How do you know it doesn’t help?” asks the therapist. “Maybe you’re not on a therapeutic dosage for you.”
“It doesn’t help. I don’t want to change it. It won’t help me.”
“How do you know if you haven’t tried?”
“I just don’t want to.”
Last week, the conversation came up again.
“Okay, I’ll give it a try,” he says, with little fanfare or need for cajoling.
He goes home and calls his psychiatrist and has begun a higher dose. I don’t know if it will make a difference at all in his major depression or in his OCD, but it is a big move for Blake to even try. So far, he is tolerating the increase well; however it has only been two days.
In other news, his therapist asked him this week how his week was. He’d been wondering how depressed Blake had felt in the past week.
“It’s been a good week,” remarks Blake. I haven’t heard him say that in – well, I can’t recall how long.
“So, it was a good week not to get hit by a bus?” asks his therapist.
“It was definitely a good week not to get hit by a bus.”