Don’t Say It’s Not About OCD

Blake sits in his chair looking intently at the therapist. He’s just begun coming with us to sessions and he’s questioning the therapist’s approach (because, well, Blake knows better than the therapist – or mom and dad).

“I don’t understand why my parents are rubbing a tissue on the dogs and putting it on my bedroom floor if I don’t show up for dinner,” he says. “If they wanted me to come to dinner, they just could have told me.”

Well, actually, we did tell him we wanted him to come to dinner. He just wasn’t making it on time most nights.

“But why the tissue?” he wonders.

“Well…” the therapist starts. “Your parents have noticed that there are some behaviors you have that are related to OCD. And they are concerned about them.”

“What?!” His head swivels in our direction. “You’re concerned about them?! Why didn’t you ever just tell me?! Why did you ever let me leave treatment, then?! Frankly, I see nothing wrong with what I do. Dogs are not cleanly and it’s disgusting to have anything from them in my room!”

Well, actually, we did tell him we were concerned about his behaviors and that we encouraged him to be in treatment, but he refused.

As the conversation heightens, the hubby starts to get antsy. He steps into the process.

“Look, I don’t think the primary issue is your OCD right now, Blake. I think your sleep is a huge issue, and your functioning on a day-to-day basis.”

At one point Blake leaves the room in frustration and our therapist looks at the hubby and I.

“Please don’t say it’s not about OCD,” he asks us, “because I’m not so sure it’s not. Blake has a lot of OCD behaviors that he thinks are normal. I don’t want to normalize those and have him think they aren’t a problem.”

When we leave the room, I begin wondering about what our therapist said. Other professionals have pointed to Blake’s depression in recent years, not so much to the OCD. What is he seeing? So, I observe, and I begin to notice what I’ve stopped seeing in the past four years:

  • Walk into bathroom, wash. Walk out. Walk back in. Wash again.
  • Open car back door. Seat is too dirty. Sit up front.
  • “Mom? What is that on the floor?”
  • “Mom? What is that in the box?”
  • “Mom? Is that color normal?”
  • Open car back door. Seat still too dirty. Sit up front.
  • Say prayer. Pace. Say prayer again.
  • Carry squirming cat downstairs, while holding said squirming cat as far as arms will extend away from you.
  • Open car back door. Seat still too dirty. Get a towel and clean seat before sitting.

Blake’s OCD is still very much there. It’s just been quieter. And he’s accepted it as normal (at least he seems to have). How is it connected to his deep, deep depression? That will be an answer we will have to watch unfold.

 

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*Good Morning!

*On the eve of the annual conference of the International OCD Foundation (IOCDF), which is taking place in Chicago, I am re-posting this entry from a while back. OCD is a serious disorder that can profoundly affect lives. Knowledge and treatment can make a world of difference.

This is a piece I wrote for myself about three and a half years ago – before I started writing this blog.  It reflects the feelings I felt at seeing my son stuck in an OCD ritual, and my struggles with a public that often does not understand that OCD can wreak havoc on lives. 

Image courtesy scottchan@freedigitalphotos.net
Image courtesy scottchan@freedigitalphotos.net

“Good morning!” I say in my most cheery voice as I open the car door and a load of kids tumbles out. I’m working at morning valet at my son’s school, a volunteer position I’ve helped with for the past four years. “Have a great day!” I wish them as they enter school for the day. Across the parking lot, I catch sight of my own son, standing by my car.   I can make out the brown curls on the top of his head, which is bowed in prayer. I check my watch – 20 minutes have passed since he began this process. Twenty minutes on a prayer that reasonably ought to take less than five. I can see him repeating the same motions he’s done over and over already. I even think I can see him mouthing the same words.

Enough already,” I think to myself and begin to walk in his direction.

“Be right back,” I tell my fellow volunteers as I leave my post. When I get to him, he doesn’t acknowledge me. He’s deeply, fervently in prayer.

Image courtesy David Castillo Dominici @freedigitalphotos.net
Image courtesy David Castillo Dominici @freedigitalphotos.net

“Hon,” I ask, “can I help in some way?”

Absolutely no reply. His lips move at rapid-fire pace and he’s planted in place. I put my hand on his shoulder.

“It’s time to go in to school now,” I tell him.

“Mom! I was almost finished! Now I have to start it all over!”

“Honey, you’ve been saying the same prayer over and over for the last 20 minutes. It’s enough. Go join your friends before school starts.”

“I have NOT been saying it over and over. I keep messing up or skipping parts so I have to start again and get it right. I almost had it this time and you interrupted.”

“I don’t think the point is to get it perfectly right. I think it’s about what’s in your heart. You-know-who is just trying to trick you.”

I say this last part in reference to his OCD, which we’ve known he’s had since he was 7. He is nearly 14 now.

“Really? Do you think so?” he says sounding just a little bit hopeful.

“You know that’s the truth. Come on, you can fight this.”

“No, no, no. I have to get it right,” he says. “Just let me do what I have to do.”

“Come on, honey. Stop and go to class.”

“Mom!!!”

“Fine! It’s your OCD. You handle it the way you see fit.”

I throw my arms up in exasperation as I walk back to the waiting line of cars. He goes back to his prayers, trying to finish before he is tardy to class. My heart is heavy as I watch him being caught up in this cycle…trying to get it just perfect and falling short over and over again. I want to make this better for him, want him to be able to go hang with his buddies who are all together before school begins, but I am just an interruption to a process he feels he must go through.

Not long ago I saw a segment of an interview of Howie Mandel by Larry King. Larry was asking Howie about his OCD. At one point Larry looked at Howie and asked, “It’s not a severe mental illness, is it? I mean, it’s not depression.” Larry went on to talk about how we all have a little OCD and how he has all his vitamins and medicine lined up in a certain order and takes them in that order. Howie did his best to explain how OCD can severely impact someone’s life, but I never really felt that the point hit home.

I think Larry’s question reflects what we see in the media about OCD. People with OCD are portrayed as quirky, silly, and super organized. Maybe they are controlling and bothersome. What we miss seeing is the anguish and the suffering. We do not understand how OCD can hold an individual – and entire families – hostage to it. If we can ask the question, “It’s not a severe mental illness, is it?” then we have never witnessed a child with hands so bloody and oozing from over-washing that they wince with pain if anything brushes against them. We have not had a family hike interrupted by the un-ending screams of a child who is certain he is about to die because there may have been a Lyme disease carrying tick on the shrub that brushed up against him. We have never had a sheriff’s deputy come over to us in alarm because our child is screaming so horrifically that they sound like they are being torn limb from limb. We have never had a family meal interrupted over and over because our teenage son has to stop eating to repeat a ritual before he can go on eating. And we have never seen a 13-year-old boy reduced to an exhausted crumpled mass in his mother’s arms after fighting off the demon in his own mind.

“It’s not a severe mental illness, is it?”

Yes, sadly, OCD is a severe mental illness, and it attacks the things that are most precious to a person.   People think our family must be very religious because they see our son in prayer all the time. What they do not realize is that the religion our son practices bears little resemblance to any religion we practice in the home – or that anyone practices anywhere for that matter. His practices are born out of a fear that OCD gives him – a fear that something awful will happen if he doesn’t get things just right. What used to be a source of enjoyment, connection and deep meaning for him – and for us all – has become a source of endless doubt and a cycle of torturous repetition that has long lost its original intent.

Yes, there is treatment. There are terrific, highly effective treatments – and my son is in treatment now. He has beaten OCD to a pulp in the past. With this relapse, he is a teenager, in the throes of puberty and determined to be independent of what Mom and Dad want for him. So we wait, with hope that the day will come that he will decide that he loves himself more than he loves fighting us. We wait for the day that he turns his strong-willed nature against the OCD that currently holds him in its grasp and moves toward a freer life. But it’s going to be one heck of a war when it comes because, yes, OCD can be severe – and it grows in strength over time. In the meantime, our family will be here, honing our skills so that we can back this boy up when he is ready to fight.

For more information and to find help, visit the website of the International OCD Foundation: https://iocdf.org/

“I’m In an Exposure”

Image courtesy Stuart Miles at freedigitalphotos.net
Image courtesy Stuart Miles at freedigitalphotos.net

“Hey Mom, I’m in an exposure right now,” Blake informs me. He sounds just the slightest bit excited.

“Really?” I ask. “What are you in an exposure for?”

I’m curious about this statement. Blake hasn’t talked about “exposures” in years. Certainly I haven’t heard anything of the sort from him since he refused treatment for his OCD just over three years ago. Exposures are an integral part of evidence-based treatment for Obsessive-Compulsive Disorder. The person with OCD places themselves, often with the support of a therapist, in situations that would normally provoke compulsions/rituals, but chooses not to pacify the OCD by performing those compulsions. Gradually, the OCD sufferer adjusts and learns to cope with what might have previously felt intolerable.

“Today is a special day, religiously,” Blake tells me. “I don’t know if there are any special observances I should be doing beyond what I’ve already done. I’m feeling pretty anxious, but I’m not giving in to it. I’m allowing myself to tell myself that I’m doing the best I know how and that has to be good enough.”

I know this is tough for him. We’ve been held captive in the house, at times, with Blake paralyzed over not knowing how to handle some religious observance (he is more religious than the rest of our family, having embraced religion about five years ago. OCD loves to mess with that and his obsessions and compulsions often revolve around religion). I tell him that I recognize this must be tough and that I’m glad he’s happy he’s made the choice not to give in to his OCD this time.

Blake is still struggling with depression and having difficulty with motivation. His OCD lingers mostly in the background, rearing its head from time to time. Yet, at moments lately, I see mini breakthroughs. He is more willing to talk about feeling anxious – something he would have become furious about in the past if I would have mentioned it. Just yesterday I heard him repeating a prayer as I sat next to him.

“Are you supposed to repeat that prayer at certain times?” I inquire. “I notice you just said it a second ago.”

“No,” he says.

“Oh, it’s an anxiety thing?”

“Yep, it is,” he replies – with no defensiveness.

That little exchange would have been unthinkable even six months ago. Perhaps he’s a little more mature. Perhaps I’ve learned to be less intrusive, to have less of that accusatory tone in my voice. Whatever it is, this little window of openness is nice.

As for the exposure he self-imposed, we never spoke of it again, but I’m pretty sure it went well. He went off to babysit our friends’ children, came home later and proceeded with his day. There was no frantic calling of religious authorities or begging me to text someone who is in the know. Maybe that is how Blake’s war with OCD will be won, with little hand-selected battles he feels ready for. If so, I’ll cheer him on quietly each time he takes one on.

 

Good Morning!

I found this piece of writing the other day.  It is something I wrote for myself about two years ago – before I started writing this blog.  It reflects the feelings I felt at seeing my son stuck in an OCD ritual, and my struggles with a public who often does not understand that OCD can wreak havoc on lives. 

Image courtesy scottchan@freedigitalphotos.net
Image courtesy scottchan@freedigitalphotos.net

“Good morning!” I say in my most cheery voice as I open the car door and a load of kids tumbles out. I’m working at morning valet at my son’s school, a volunteer position I’ve helped with for the past four years. “Have a great day!” I wish them as they enter school for the day. Across the parking lot, I catch sight of my own son, standing by my car.   I can make out the brown curls on the top of his head, which is bowed in prayer. I check my watch – 20 minutes have passed since he began this process. Twenty minutes on a prayer that reasonably ought to take less than five. I can see him repeating the same motions he’s done over and over already. I even think I can see him mouthing the same words.

Enough already,” I think to myself and begin to walk in his direction.

“Be right back,” I tell my fellow volunteers as I leave my post. When I get to him, he doesn’t acknowledge me. He’s deeply, fervently in prayer.

Image courtesy David Castillo Dominici @freedigitalphotos.net
Image courtesy David Castillo Dominici @freedigitalphotos.net

“Hon,” I ask, “can I help in some way?”

Absolutely no reply. His lips move at rapid-fire pace and he’s planted in place. I put my hand on his shoulder.

“It’s time to go in to school now,” I tell him.

“Mom! I was almost finished! Now I have to start it all over!”

“Honey, you’ve been saying the same prayer over and over for the last 20 minutes. It’s enough. Go join your friends before school starts.”

“I have NOT been saying it over and over. I keep messing up or skipping parts so I have to start again and get it right. I almost had it this time and you interrupted.”

“I don’t think the point is to get it perfectly right. I think it’s about what’s in your heart. You-know-who is just trying to trick you.”

I say this last part in reference to his OCD, which we’ve known he’s had since he was 7. He is nearly 14 now.

“Really? Do you think so?” he says sounding just a little bit hopeful.

“You know that’s the truth. Come on, you can fight this.”

“No, no, no. I have to get it right,” he says. “Just let me do what I have to do.”

“Come on, honey. Stop and go to class.”

“Mom!!!”

“Fine! It’s your OCD. You handle it the way you see fit.”

I throw my arms up in exasperation as I walk back to the waiting line of cars. He goes back to his prayers, trying to finish before he is tardy to class. My heart is heavy as I watch him being caught up in this cycle…trying to get it just perfect and falling short over and over again. I want to make this better for him, want him to be able to go hang with his buddies who are all together before school begins, but I am just an interruption to a process he feels he must go through.

Not long ago I saw a segment of an interview of Howie Mandel by Larry King. Larry was asking Howie about his OCD. At one point Larry looked at Howie and asked, “It’s not a severe mental illness, is it? I mean, it’s not depression.” Larry went on to talk about how we all have a little OCD and how he has all his vitamins and medicine lined up in a certain order and takes them in that order. Howie did his best to explain how OCD can severely impact someone’s life, but I never really felt that the point hit home.

I think Larry’s question reflects what we see in the media about OCD. People with OCD are portrayed as quirky, silly, and super organized. Maybe they are controlling and bothersome. What we miss seeing is the anguish and the suffering. We do not understand how OCD can hold an individual – and entire families – hostage to it. If we can ask the question, “It’s not a severe mental illness, is it?” then we have never witnessed a child with hands so bloody and oozing from over-washing that they wince with pain if anything brushes against them. We have not had a family hike interrupted by the un-ending screams of a child who is certain he is about to die because there may have been a Lyme disease carrying tick on the shrub that brushed up against him. We have never had a sheriff’s deputy come over to us in alarm because our child is screaming so horrifically that they sound like they are being torn limb from limb. We have never had a family meal interrupted over and over because our teenage son has to stop eating to repeat a ritual before he can go on eating. And we have never seen a 13-year-old boy reduced to an exhausted crumpled mass in his mother’s arms after fighting off the demon in his own mind.

“It’s not a severe mental illness, is it?”

Yes, sadly, OCD is a severe mental illness, and it attacks the things that are most precious to a person.   People think our family must be very religious because they see our son in prayer all the time. What they do not realize is that the religion our son practices bears little resemblance to any religion we practice in the home – or that anyone practices anywhere for that matter. His practices are born out of a fear that OCD gives him – a fear that something awful will happen if he doesn’t get things just right. What used to be a source of enjoyment, connection and deep meaning for him – and for us all – has become a source of endless doubt and a cycle of torturous repetition that has long lost its original intent.

Yes, there is treatment. There are terrific, highly effective treatments – and my son is in treatment now. He has beaten OCD to a pulp in the past. With this relapse, he is a teenager, in the throes of puberty and determined to be independent of what Mom and Dad want for him. So we wait, with hope that the day will come that he will decide that he loves himself more than he loves fighting us. We wait for the day that he turns his strong-willed nature against the OCD that currently holds him in its grasp and moves toward a freer life. But it’s going to be one heck of a war when it comes because, yes, OCD can be severe – and it grows in strength over time. In the meantime, our family will be here, honing our skills so that we can back this boy up when he is ready to fight.

Milestone or Stumbling Block?

Image courtesy dititalart@freedigitalphotos.net
Image courtesy dititalart@freedigitalphotos.net

Blake had a milestone event of sorts just a little over a week ago. He left the school that has been his home for the last five and a half years.  It is a local charter school that we chose to enroll him in when he began the fifth grade. Back then we could see the writing on the wall – the local junior high school and Blake would not be a good match.  A project-based learning charter school seemed a much better way to go for our bright, anxious boy.  He could have remained there through high school graduation, and we all imagined that he would.  Yet Blake’s growing religious observance clashed with the secular atmosphere.  He asked us for over a year to allow him to move into a home study program, until we finally agreed, but was it the right move?

Blake began the journey toward becoming more religious about three and a half years ago.  He started small, a little change here and there.  At the time, he had been managing his OCD incredibly well.  We barely saw any sign of it, and we would rejoice when he made choices to do the opposite of what OCD told him to do.

Then, things changed.  Blake’s OCD made a strong comeback.  He knew what to do and he reached out to his therapist to coach him.  Yet, despite making regular plans of action, Blake didn’t follow through.  He gave in to his anxiety. His compulsions around his contamination fears grew, but OCD wasn’t done there.  It found Blake’s newly growing interest in religious observance the perfect area to attack.  Blake was already uncertain about whether he was practicing his religion correctly, and his OCD dug right in.

Maybe you didn’t say that prayer right.  You should say it again,” OCD would taunt him.

“You may have just done something to offend something sacred.  You’d better undo it.”

Religion and OCD became entangled and it became difficult to tell one from the other, at least for those of us at home.  To people on the outside, Blake just looks like young man of “a deep and reverent faith” to quote one of his teachers.  When people learn that Blake is more observant than the rest of the family, my husband and I often receive praise for being so supportive of our son.  I received much positive feedback as Blake wound down his final week of school, but I felt like a sham.  I am not who these people think I am.

Image courtesy Stuart Miles @freedigitalphotos.net
Image courtesy Stuart Miles @freedigitalphotos.net

For the last five and a half years, Blake has been nurtured by educators who have strived to understand his OCD.  He has been welcomed by resource specialists who’ve listened patiently to his anxious moments.  He has kept warm company with the health office attendant – sometimes for hours on end and for days in a row.  Never once has anyone suggested that this young man, initially unable to even sit in a classroom, didn’t belong at that school.  No one ever tried to send him home like they did at his former school, because he was wearing the nurse down.  No one called home or sent him to the principal because his repetition of prayer sent him late to his first period yet again.  They accepted him as he is.  And they told me that I am a good mother for supporting his growing religious needs.

So, why do I feel like a sham?  Because deep inside, I’m not sure if this is really religious observance.  Sure, it looks like it on the surface, but it’s still too tangled up with OCD’s need for a black and white design for living for me to know if it’s genuine, or if it’s OCD.  Did I just pull my son out of one of the most wonderful and nurturing experiences in his life in the service of his OCD?  Or did he really grow into a religious young man with different needs?  I don’t know if we made the right decision.  I don’t know if I gave in because I was tired of fighting, or because it really was time for Blake to go in a new direction.  All I know is that I am uncertain right now, and I miss the home that was my home, too.