Double Duty

Image by Peggy und Marco Lachmann-Anke from Pixabay

It has been emotionally exhausting to be a mental health therapist this past year! Actually, it’s been emotionally exhausting being a human. As a psychologist, I have never before experienced a time where I have felt so many depending on me, while I try to navigate similar circumstances to the people I work with. And I have felt so drained after hours in front of the computer screen doing teletherapy that I have honestly found no energy to sit and write in this blog – until today.

Without going into details in this post, I will note that Blake and Michael are back in our home with the hubby and myself. What the future holds for them, and so many young adults I know and work with, is still to be written. For now, Michael is completing a graduate program from a distance, and Blake…. Well, Blake returned home wanting to go into therapy (not for OCD; for something else), and we are supporting him in doing that.

Now, here’s something to note: when you are a mental health professional, you cannot be therapist to your own family members. First, it’s actually considered a professional no-no. At the same time, your spouse and your children absolutely do not want you digging into their psyches. I mean, really, who among us wants our parents probing our emotional health? Makes sense, yes?

Oh, and also, the more you know about a subject, the more your family has absolutely no interest in hearing what you know. Yes. It’s true. I have specialized in anxiety and Obsessive-Compulsive Disorder for over a decade, write articles on these subjects, teach professionals at workshops, educate the public…BUT I KNOW NOTHING! If I even move to share information about anxiety or OCD among family, it is of no interest. So, I have learned (as my mental health professional colleagues have) to listen to my family, and even my friends, talk about their symptoms while I keep my mouth shut. I offer no recommendations or information unless I am specifically asked, lest it I be reminded, “Stop playing psychologist with me!” (and, yes, you do detect some frustration there – it’s like I know the coolest information, but no one wants to hear it. I digress.).

Anyhow, this state of “Mom-knows-nothing-about-anything-that could-be-helpful-to-me” made something that happened today all the more stunning.

“Mom…” Blake says. “How was it that I used to deal with intrusive thoughts when I was in ERP therapy for my OCD? I’ve been trying to purposely think the thoughts, but I’m only getting more uncomfortable.”

“Hmmm. Tell me a little bit more.”

“Well, I couldn’t sleep last night in part because of the thoughts, so I tried to think them, but it just felt worse. I didn’t feel better.”

“Would you be willing to tell me a little more, or would you like me to connect you with a colleague who can help you sort this out?” I ask.

“I’d like to see if you and I can figure out what I’m doing wrong,” he says.

“Of course,” I say. “I’m heading out to take something to Grandma. When I get back, you let me know when you’re ready. Set aside time with me.”

And I fully expected that would be that. When I returned home, though, Blake found me again. He actually wanted to learn what I know! And so we sat down. I was able to share the little understood secret of OCD: if you practice exposures with the goal of making your thoughts or discomfort go away, it will backfire on you. Your brain is too smart. OCD already tells you that you can’t handle being uncomfortable and that you’d better do something to make yourself feel better – and that is where it traps you.

“So, my job is to practice getting good at being uncomfortable,” Blake deducts.

“Yes,” I say, “but you have to have a really good reason that it’s worth doing that because why do it otherwise?”

And together we find his “why” and we create a mass of exposures he can use. He picks one he’s going to try over the next week. And then he says THIS:

“Thank you, Mom. It’s so nice having a therapist for a mother.”

And my heart is grateful.

Long Past Time for a Change

Raven* is exasperated. The feeling swells in her before the words come out. Tears of frustration born from years of suffering well up in her eyes as she struggles to wrap her mind around this .

“But why?” she asks. “Why didn’t anybody tell me about the right treatment for this? Why don’t you guys do a better job of getting the information out there?” She is pleading for me to help her make sense of something almost as unthinkable as the thoughts that torture her mind.

Raven has Obsessive-Compulsive Disorder (OCD). She’s the newest member of the free support group I run for adults with OCD. Hers is a story I’ve heard time and time again. She’s been terrorized for years by horrific and vivid thoughts and images. It’s meant time lost from work, time taken from her family (and from being a mother), hospitalizations, murmurings of psychosis. It took years to get a proper diagnosis, and years (and many treatment providers) after that to discover that there’s actually a treatment of choice – an actual best practice.

As the facilitator for this group, and the only representative of the professional mental health community, I struggle to explain to her, and the rest of the group members, about the disagreement in the mental health community. I try to explain the complexities where there really ought not to be any. But any words that come out of my mouth fall short. Thankfully, the group, and Raven, have shifted to a different focus.

My mind, however, has not moved. Raven’s question is simple and honest. She wants to know why, when she was diagnosed with OCD, she wasn’t immediately referred to a mental health provider who specialized in the most effective therapy for OCD – Exposure and Response Prevention (ERP), a type of Cognitive Behavior Therapy. That I am grasping for a reasonable answer taunts me. And the absurd realization that washes over me in this moment leaves me feeling embarrassed and ashamed, even unworthy of sitting in this room of brave OCD sufferers. We providers in the mental health community are not all trained to send people with OCD for ERP therapy.

An Open Letter

I rolled this issue around in my mind as I attended the 26th Annual OCD Conference in Austin, Texas. I spent an evening networking and brainstorming with other mental health professionals and advocates determined to further the cause of getting effective education and treatment to those who need it. Then something came my way that stoked the fire and increased the sense of urgency. It came in the form of a blog post that kept popping up in my social media feeds. I finally found time to click on it and read, unprepared for the emotional reaction that would ensue.

The post, titled “An Open Letter to Mental Health Providers,” by Jodi Langellotti is an impassioned plea to mental health providers from the wife of a longtime OCD sufferer. In it, she outlines the years her husband sought treatment for his OCD, going in and out of therapy and from therapist to therapist with nothing seeming to help. It wasn’t until six years into the process, when her husband, Chris, was “unable to care for himself” that a clinic program manager mentioned to the couple that there was actually treatment specifically for OCD and directed them to the website for the International OCD Foundation (IOCDF). On her own that evening, Jodi searched the IOCDF site and discovered the treatment that would begin the road to her husband’s recovery.

After sharing her family’s journey, Jodi implores mental health therapists to get educated, get properly trained, and to refer if they do not have proper ERP training. ” I am begging you to educate yourself,” she says. “Please, don’t tell people that you can help them with their OCD when you have had no specific training in treating this unbelievably complex and debilitating disorder. Please do not employ other forms of therapy which can actually make OCD worse, thereby increasing the suffering of your patient.“

Reading Jodi’s words tears me apart. It infuriates me about my mental health community, and it emboldens me at the same time. The IOCDF notes that “It takes an average of 14 – 17 years from the time OCD first appears for people to receive appropriate treatment.” (1) There is absolutely nothing that is acceptable about this. Specific treatment exists and the majority of those who receive appropriate treatment “will benefit from therapy, medicine, or a combination of the two.” (1) So why do mental health providers not refer those with OCD for ERP therapy? This is where it gets absurd.

We Aren’t Taught About the Best Treatment

Most mental health providers are not trained in graduate school on how to treat specific disorders, at least I wasn’t back in the late 1980’s and early 1990’s. I was trained on what the different disorders looked like, how they presented, and how to diagnose them. Instead of specific treatments, I was presented with theory and theoretical orientation. Choose the theory that best fits for you and approach mental illness accordingly. The problem with approaching mental health in this manner is that it is devoid of what I was taught as a practitioner-scientist. I wasn’t taught to go on “hunches” or what “fits” my way of thinking. Rather, I was taught to test hypotheses and follow the evidence – and the evidence overwhelmingly shows that ERP is the best treatment currently for OCD. Yet, the theoretical approach to practice persisted.

“Well,” you may be thinking, “she went to graduate school thirty years ago. Surely things have changed.” That’s not what I’m hearing. Shala Nicely, LPC, an OCD therapist, sufferer, and author, shares her experience in graduate school within the current decade in her personal memoir, “Is Fred in the Refrigerator? Taming OCD and Reclaiming My Life.” Astonished at the lack of information on treatment in the “Diagnostic and Statistical Manual of Mental Disorders,” she asked her professor where she might find a listing of of the types of therapies to treat disorders.

“There isn’t one,” she was told, “There isn’t agreement in the field about the best way to treat any of these disorders.”

Recent years have seen the emergence of “evidenced-based practice” in the field of psychology. Basically, this means practicing according to what research demonstrates works best. But this has not seemed to stop the adherence to theoretical dogma. Those of us who do ERP for OCD or who stand up for its efficacy frequently face challenges from our theory-bound colleagues. When I took Blake to an ERP trained specialist more than a decade ago, I was questioned by one psychologist about whether this “stuff” my son’s therapist was “doing actually helps.” My own psychologist at the time, a trained psychoanalyst, informed me that my son wouldn’t get better until the “underlying issues” were uncovered. But he WAS getting better before my eyes.

In the towns and cities where we practice, ERP providers are frequently one of very few. We are sometimes regarded as doing “crazy” work or torturing our clients, or we are told that we are only putting a band-aid on a gaping wound and that there is sure to be “symptom substitution” when our work is put into practice (in reality, that is NOT the case). On Facebook forums for therapists, we bear witness to endless misinformation about what causes OCD or what will be helpful to OCD sufferers. When we stand up for what the evidence bears out, we are frequently mocked or dismissed with statements such as “In my opinion…” as if the research on what hurts and helps in OCD can be dismissed by opinion. (Thank goodness for the amazing group that popped up on Facebook in this past year to support those of us who practice this work – but I digress).

I do not write this to disregard the numerous mental health practitioners who recognize best practices for treating OCD, or the increasing numbers who are clambering to get trained to do the work (as evidenced by the IOCDF’s Behavior Therapy Training Institute regularly selling out in minutes). I am acknowledging that not providing training on best practices in graduate schools, and having theoretical battles while ignoring what data tell us is having dire consequences for consumers and for mental health providers, alike. As Shala Nicely so eloquently noted in her memoir:

“It was a chasm that unfortunately swallowed two innocent groups: mental health professionals, who could leave graduate school unaware of how to effectively treat people with OCD or other mental disorders, and clients with mental illnesses who, like me, could suffer needlessly for years, even decades, as a result.”

Time for an Uprising

As I ponder Raven’s question, I am aware of the divisions that exist in the mental health community. It is reminiscent of political parties sparring over ideological systems while action languishes. There is no room for it while people suffer, yet still it exists. Like Jodi Langellotti, I implore my colleagues and the educational institutions that train us to take the important steps: teach the best treatments and refer to providers who provide them. General practitioners refer to cardiologists and oncologists, specialists, when needed. Mental health ought to be no different.

But I fear that my field will not change unless it is demanded by the public. So to all who read this, recognize that you have power, too. We may need an uprising of sorts – a grass roots movement. Do not believe you must wait for mental health to change itself. Speak up to your general practitioners and your pediatricians. Speak to anyone you know who refers for mental health services. Tell them that OCD must be treated by a specialist in ERP. Take documents from the IOCDF, the Peace of Mind Foundation, the Anxiety and Depression Association of America (ADAA), or the practice guideline from the American Psychiatric Association (2) with you.

Those of us in the trenches doing the work of treating OCD using the treatment demonstrated to have the best impact will keep doing our part to spread the word. But we are buoyed by the informed voices that come from the public. We are energized when we see you posting during OCD Awareness Week, when you show up at OCD Walks, when you host screenings of movies like “Unstuck: An OCD Kids Movie,” or when you tell your story on the news, in a book, in an article, or in a simple social media post. It’s long past time for a change. I don’t want to keep listening endlessly to stories like Raven’s. I’m ready for stories of, “I was just diagnosed with OCD and my doctor knew to send me to a specialist.”

______________________________________________________________________________

“An Open Letter to Mental Health Providers”: https://livinginchbyinch.com/an-open-letter-to-mental-health-providers/

International OCD Foundation: https://iocdf.org/

Is Fred in the Refrigerator? Taming OCD and Reclaiming My Life – by Shala Nicely: https://www.amazon.com/Fred-Refrigerator-Taming-Reclaiming-Life/dp/1732177007/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=

(1) International OCD Foundation Brochure – What is OCD?: https://iocdf.org/wp-content/uploads/2014/10/What-is-OCD-9-25-17.pdf

(2) American Psychiatric Association, “PRACTICE GUIDELINE FOR THE
Treatment of Patients With Obsessive-Compulsive Disorder”: http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/ocd.pdf

*No real names of group members have been used.

So Lonely

Image courtesy of Ohmmy3d at FreeDigitalPhotos.net

“I’m just so lonely,” says the young adult in front of me, the despair apparent as the words sit in the air between us.

I’m sitting in the living room of my patient’s family home during one of my recent treatment visits. This past week has been one with slips backward and, to one so new to OCD treatment, they are demoralizing. OCD has taken such a huge toll on this young person’s life that friends and social activities have become a distant memory. OCD demands almost every waking hour and the rituals only end when sleep wins out in its urgency.

I’ve stopped doing exposures at this point in our session – I’m here to do exposure and response prevention (ERP – if you don’t know what this is, you can read about it by clicking HERE) work. My patient wants to do more, wants to move on and get better as fast as possible, but I realize it’s time to step back, time to help paint a clearer picture of what to expect. OCD treatment is not a race to the finish. It is about learning new healthier ways of managing discomfort. In this young person’s case, it is about rebuilding a life worth living – and that takes time and patience.

So, I’ve stopped the session. I’ve changed course. Sometimes OCD recovery is not all about exposures. Sometimes it’s about caring for the whole person and finding something to live for in the moment. Why do the hard work of beating OCD when there’s not something keeping one moving forward right now?

We sit on the sofa. We explore what’s going on. We connect. We realize my patient misses other people, misses being involved with something that is connected to the bigger picture. We brainstorm. We find a regular activity that is doable and that will provide uplifting moments. We look at when the next time there’s an activity available. We arrange for transportation and a companion to go with. For the first time in this hour, my patient smiles.

I get ready to leave and, suddenly, the twenty-something is standing in front of me, apologetic that we didn’t do more exposures today and didn’t get further in treatment. I gently and optimistically adjust that perception. We DID get further in treatment today. We addressed something that needed to be addressed. I encourage my patient to be kind to themself and I note, on the way out the door, that I will look forward to their renewed energy the next time we meet.

OCD is Treatable

Image courtesy of Master isolated images at FreeDigitalPhotos.net

This week, as I was thinking about this blog, it occurred to me that something has been missing from my posts for some time. That “thing” is the notion that Obsessive-Compulsive Disorder is treatable; that there is hope for sufferers, their families, and those who care for them. That OCD is treatable was core to my very intentions behind creating this blog – and I fear that, lost in our situation lately, I’ve forgotten to mention this all-important point recently.

Anyone who is new to this blog may not know the history of OCD in our family. They may not have read my initial post in which I explained that our teenage son, Blake, through participation in treatment, had once lived a life where OCD had become a thing of the past. They may not know that I started this blog as a place to give my emotions and thoughts about our experience an outlet, lest I let them flow in front of Blake, who was refusing treatment at the time. They may not know that this blog began with the eternal hope that Blake, given some space, would decide to return to treatment and beat OCD back into oblivion once again.

I want readers to know that the situation we currently face, one in which our now eighteen-year-old frequently barely functions, is not a typical situation for a young man with OCD. I’m not saying that this does not happen when people do not get treatment. It obviously can happen. Blake, however, besides dealing with OCD, got hit by a tremendous bout of Major Depression – and it took us a while to find a professional who thought he could help even though Blake believed he was beyond being helped. Now we are all in treatment again, and we are peeling back the layers little-by-little with the hope that things will get better again. That is what I’ve been documenting lately.

At the same time, it is important for sufferers, or anyone reading this blog, to know that OCD is treatable. I know this as a mother who has been through cognitive behavior therapy/exposure with response prevention (CBT-ERP) with her son and seen amazing results. I know this as a therapist who has the true honor of watching her patients, young and old, show OCD the door and reclaim their lives. I know this as a reader of many blogs and an attendee at many conferences. People can and do get better from OCD. There is every reason to have hope.

If you continue to follow this blog, you will likely observe our family stumble and struggle. That’s just where we are right now. Yet, I continue to have hope that our son will get better once he can see that there is a light at the end of the tunnel. Thus, our journey continues. Thank you for bearing witness.

* To view helpful information about effective OCD treatment, or to see stories about positive outcomes, I’ve listed a few helpful links below:

• International OCD Foundation
• ocdtalk
• Alison Dotson
• The OCD Stories
• Jackie Lea Sommers

Exposure and Response Prevention (ERP) Comes to Our Home (Re-Post)

This post originally appeared on this blog in August of 2013.  It has remained one of my most viewed posts.  The photos of Blake’s hands are probably the most clicked on photos in this blog, and appear at the top of Google’s Images when you search for anything related to OCD and hand washing (and they appear to be the first “real” image of what can happen to a person’s hands when contamination OCD leads to hand washing). I thought it was worth re-posting.

* Advisory:  This post has some photos of hands damaged from over-washing.  They may be difficult for some people to look at.

This is a nearly empty bottle of liquid soap.

It looks pretty normal sitting on the bathroom counter until you take a closer look.  That brown ring around the bottom of the bottle is dirt from our backyard.

The bottle of soap caught my eye several days ago and I snapped a few photos of it to remind myself of where we’ve been.  This bottle, with its dirt that is settled all around the bottom has been with us this entire summer – since before I even began this blog.  It is a remnant of one of Blake’s last OCD treatment sessions before we made the  heavy-hearted decision to stop therapy.  I am sharing it with you today, as a way to share what Exposure and Response Prevention (ERP) can look like.

What is ERP?

ERP is “the most important therapy in CBT for OCD,” according to the International OCD Foundation.  In a nutshell, ERP involves a conscious choice for a person with OCD to confront the items (thoughts, situations, etc.) that create discomfort and then not do the compulsions or rituals that would normally be provoked.   The idea is for the OCD sufferer to allow his or her anxiety and discomfort to abate naturally, without using rituals to cope and thereby creating healthier ways of coping.  This is commonly done with the help of a mental health therapist who is trained to do Cognitive Behavior Therapy (CBT) with OCD (for more information, Click Here.  Janet at OCDtalk has also written a thorough post on ERP.).

In our situation, Blake was really struggling with hand-washing compulsions (in addition to many others).  It was particularly bad at the time and he ran to the sink to wash anytime he felt the slightest bit “dirty.”  No amount of salves or special creams could heal the damage he was doing to his poor hands.  Below are some photos of how his hands looked around the time.  A reminder, these are 14-year-old hands.  They are painful for me to look at.  Anyone who pokes fun at compulsive hand-washing or thinks it is a joke has never lived with a family member who is suffering because of it.  The pain is real, intense and it interferes with day-to-day activities.

While Blake’s treatment team had done ERP work with him on the hand-washing at the office (they would touch “dirty” things and then he would not wash), we were seeing little impact of the exposures.  We all agreed at the time that Blake was “white knuckling” it through the exposure and avoiding truly immersing himself in it by reminding himself that he could wash as soon as he got home.  He never gave himself the opportunity to allow his anxiety to come down to a manageable level.  So, it was decided that one of his therapists would make the trip to our home.  The plan was for Blake and the therapist to “contaminate” our entire house so that Blake would not have a place of safety to run to in order to avoid his discomfort.

The Day Arrives…

Blake was in agreement with the plan, until the actual day arrived.  He was tired of painful hands and was hopeful that this exposure would finally put his hand-washing to rest.  He greeted his therapist, happily, at the door.  As they began to prepare for the actual exposure, he began to change his tune.

“I don’t remember actually agreeing to do this,” he told the therapist.  His anxiety was already on the rise, and he was trying to thwart the exposure from going any further.  His therapist and I reminded him of his desire to get better and advised him how important a step this was toward breaking free from the grip OCD had on his life.

Begrudgingly, he followed his therapist into the backyard where both dug into the dirt and began to put handfuls of it into a squirt bottle.  Then they returned to the house where they filled the bottle with tap water and shook it vigorously.  It looked like a muddy mess.  I silently gulped when I saw it.

“Are you really going to spray that mess all over my house?”

This was not going to be easy – and I really have no problems with dirt.  I can sit in it, get it under my nails, whatever…  But this – even I wasn’t relishing the idea of my house being sprayed with a bottle of dirty water.  The thing is, that was just the point.  Yes, it is uncomfortable to have dirt sprayed in your house.  It’s even kind of over the top.  BUT, it’s not going to kill anyone.  It is survivable – you can even thrive with dirt on your belongings.  The point for the OCD sufferer is to stick with the discomfort long enough to recognize that it abates and that they can have a good life without having to give in to their compulsions.

Reticent as I felt, Blake’s anxiety was rising through the roof.  He now wanted no part of this exposure.

“I changed my mind.  I don’t want to do it,” he stated.

His therapist reminded him that this exercise, as uncomfortable as it felt right now, was going to help put his OCD in its place.  She asked me to bring her all the bottles of liquid soap that were in the house.  I complied and sought them out.  Within a few minutes, I was back.  Blake was not in a good place.

The Battle Begins

While I’d been on my mission, Blake’s therapist had opened my bottle of dish soap (which Blake uses all the time to wash his hands) and poured a good amount of that muddy water right into it.  Blake was going to have none of that and before anybody could convince him otherwise, he’d dumped the entire contents of the bottle down the drain and placed the empty container in the recycle bin.

“Blake,” she reminded him, “we need to contaminate all the things you use to relieve your anxiety.  You remember; we talked about this.”

“No,” he said firmly.  “I don’t want to do it.”

She continued with her task and began to pour muddy water into the liquid soap bottles I had brought to her.  Blake’s face grew red.

“I said, ‘No’,” he stated.  “LEAVE.”

The therapist continued.  She was finished contaminating his sources of washing.  She took a rag and sprayed it with the dirty water.

“Come on, Blake.  Help me.  Let’s contaminate the house together. It’s better if you’re a part of this.”

“NO! LEAVE!”  His voice was powerful.  Anxiety was making way for fury.

“Remember?  You wanted to get better.  I’m not going to stop because I care about you.  I care about your hands and I don’t want you to have to keep living with OCD bossing you around and controlling your life,” she told him.

“THERE’S NOTHING WRONG WITH ME!!!!  I’M TIRED OF THIS!!! I’M TIRED OF BEING TOLD THAT I’M SICK!!!  SICK! SICK! SICK! LEAVE!!! GET OUT OF MY HOUSE!!!!”

Blake was absolutely getting out of control at this point.  He’d never said an angry word to his therapist before.  Now, he was screaming at the top of his voice and looking like a maniac. My heart was breaking for him.  I didn’t know whether to cry or burst out into giggles at the sheer anxiety the whole thing was creating in me.

His therapist continued with her quest.  She carefully wiped the dirty cloth over all the furniture, the walls and our personal belongings.  Our entire family was going to be in on this exposure.  But was Blake going to buy into it?

Blake Hits His Breaking Point

“I TOLD YOU TO LEAVE!!!  I CAN’T TAKE THIS ANYMORE!!  I’M JUST GONNA…”

Blake lunged for the pencil cup on top of the cabinet near him.  In one swift move, he pulled out the sharpest pair of fabric shears in the house and raised it up over his head, as if he were about to plunge it into someone.  But it wasn’t clear to me if he was going for his therapist or himself.

“Put it down, Blake!” I commanded, but my words weren’t necessary.  Blake’s hand hesitated in the air and his expression turned to horror and he began to tremble.

“What am I doing?  What am I doing?”

He ran down the hallway to the living room where he started sobbing.

“I’m sorry.  I’m sorry.  I’m sorry,” he repeated.

The therapist stepped outside to call her supervisor.  Blake looked at me through his tear-filled eyes.

“I wouldn’t have hurt myself,” he said.  “I just wanted her to stop.  I can’t believe how far I went to protect my OCD.”  He cried quietly for a few minutes until his therapist stepped back into the room.

“Do you want to talk?” she asked him.

“I’m so sorry,” he said.  “I wouldn’t have done anything.  I know what I need to do now.”

He walked down the hallway with a half-smile on his face and picked up the abandoned squirt bottle.

“May I?” he asked.

“Of course,” she answered.

He began to make his way through the house, squirting that dirty water on the walls and the countertops.  He covered his game consoles in it and his favorite sitting areas.  Tears streamed down his face, but now they were tears of relief.  He knew this was what he needed to be doing.  Then, he directed the therapist to his room.

“We need to do my room,” he told her and he contaminated his entire room with that water, making sure he didn’t miss a thing.

The Aftermath

Blake adjusted relatively quickly to his contaminated surroundings (although I did put away all sharp objects, just in case).  He didn’t care that there were pieces of dirt in the soap bottles.  He relished it when I reminded him that our entire home was contaminated.  He’d won another battle in the war on his OCD.  His hands healed.

But the other areas his OCD affected were untouchable.  He wouldn’t budge on them; held onto them like a badge of courage and battled us to keep them.  Of course, this lead to us ultimately discontinuing treatment and to being in the limbo that we are in.

Today I still find remnants of that exposure, though it is about 3 months in the past.  There are still places that are too high for me to reach where he aimed that squirt bottle – and I kind of like the bits of dirt that remain anyway because they remind me that we still live with contamination to some extent.  They also remind me how far Blake was willing to up the ante to protect his OCD, how powerful the disorder can be in asserting itself.  And I wonder when Blake will grow in his own power and desire to take it on.  We can only wait and see.

Related articles

• Let’s Talk About ERP Therapy (ocdtalk.wordpress.com)

Wake Up!

I stumble out of bed, take a quick shower, and make my way down the hallway.  I knock on the door.  I wait. No answer.  I open the bedroom door and peek at the sleeping teen in the bed.  I glance at the clock.  7:23 am.

“Blake.  Wake up,” I call.

No movement.  Today is the same as everyday. No reply to the knock.  No response to the name uttered.  I sit on the side of the bed.  I talk.  I tickle. I finally count to three and hoist my sixteen-year-old into a sitting position.  He’s semi-conscious and he continues to try to sleep while sitting up.  I talk for a few minutes more.  I chatter to the cat, who has come to inspect us and the room.  He jumps on the bed.  This is his morning routine, too. He comes to wake his boy, as well.

Finally, I I tell the teen that he must get out of bed now.  Slowly, ever so slowly, he raises himself off the mattress, uttering a closed-eye prayer under his breath as he does, and walks into the bathroom.  I leave – for the moment.

This may sound familiar to many.  The teen who just wants to sleep in.  Wait.  Read on. Then, we’ll see…

Will He Ever Make It Downstairs?

Five minutes later, I pad down the hallway again.  I knock on the door.  No answer.  I peek inside.  The body is back under the covers, deep asleep once again.

“Blake.  Blake!  Get into the shower.”

He looks at me, a bit confused, and he rises from the bed, walks into the bathroom, and slowly shuts the door.  I go back to my room to put on some makeup.  I’m back at Blake’s door within ten minutes.  I knock.  No answer.  I open the door.  Blake is asleep again. His sheets are blotched with water.  He’s showered and, soaking wet, gotten straight back into bed.  I’m frustrated.

“Blake!”

“What?” He bolts upright, stunned by the loudness of my voice.

“Get dressed – NOW.”

Five minutes later, I’m back at the door once more.  I knock, yet again.  No answer.  I open the door.  Blake is in his underwear, asleep on the bedroom floor.

“Put on some clothes.  I’m going to stand outside the door.”

I close the door.

“Are you up?  Are you putting clothes on?”

“Yes,” comes the answer from inside the room.

“Okay, I’m going to keep standing here and talking to you until you are ready.”

Finally!…Or, Maybe Not

I chatter on with him from outside the door, directing him to keep dressing, until he finally emerges from the room.  We make our way downstairs. I begin to take care of our menagerie of pets – feed the dogs, clean the turtles’ water dish. I walk in and out of the kitchen, where Blake is supposed to be eating breakfast, saying his morning prayers, and starting his school work for the day.  Each time I leave the room, Blake has begun part of a task.  I return a few minutes later only to find him asleep once again.

“Blake.  No sleeping.  Get off the sofa and back to your routine.”

“Blake get off the floor.  Wake up.”

“Blake, you’re not studying if your eyes are closed.  Blake?”

I give up on getting anything done  but the basics.  I stay close by to keep my son awake. He looks miserable.  He tells me he feels like he’s flown to a foreign country and that he’s struggling to stay awake so that he can adjust to the new time zone.  Time and time again, I wake him.  I send him outside for a walk around the neighborhood.  He comes back and starts do work again.  Within minutes he is asleep with his head in a book.  Frustrated, I wake him yet again.

We go on like this day after day.  I’m exhausted because, at the other end of the day, Blake can’t (or won’t) go to sleep.  The hubby and I keep going into his room telling him to turn the light out.  But he doesn’t want tomorrow to come.  He doesn’t want another day like today was, so he drags it on and on, never comprehending that he is digging himself deeper and deeper into this hole.  He doesn’t listen to our words, or the words of his doctors who tell him that he must sleep.  And so, I stay awake at night, continually cajoling him to turn the light out. I cannot rest until I know that he’s finally turned it off.  If I don’t stay on it, it will go on until 2 or 3 am – as if 12:30 a.m. wasn’t late enough.

I rearrange my schedule.  I do my best not to have to leave the house before noon.  It’s worse if I leave the house in the morning.  I can leave what seems like a fully awake young man studying or feeding the dogs only to return to find him fast asleep on the kitchen floor or the family room couch.

Image courtesy artur84 at freedigitalphotos.net

At first, my hubby and I think we are dealing with defiance.  Maybe we are.  We are also dealing with profound depression.  Blake does not see anything positive in this life.  He sees nothing but the dreariness of schoolwork day after day.  Other teens don’t interest him.  He cannot imagine the future being any better.  There is nothing he wants to do. The possibility of college sounds like continued torture.  He escapes into the world of YouTube.  He cries, he yells, and he stomps out of the room a lot.  He threatens to run away.

“Put away the knives,” Michael advises me before he leaves for college.

We need more help, I realize.  We definitely need more help.  Will we even be able to do it here at home? Are we looking at hospitalization?  Residential placement?

The final straw happens one day when the hubby and I have a commitment to get to.  We will be away for six hours.  Blake is up, into the full swing of his morning routine.  We feed the animals and let the dogs out into the back yard.  As we leave, we ask Blake to let the dogs back inside in a few minutes.  He agrees and we go off to our appointment.  The temperature soars to 103 degrees.  When we arrive home, I learn that Blake fell back asleep on the floor for five hours while the dogs scratched repeatedly to come inside.  He never heard a thing.  I realize how serious the situation is.  I cannot leave my sixteen-year-old alone in the morning.  And I can’t do this alone.  I call my friend – a mental health professional with lots of experience with kids with serious emotional issues – and I cry, really cry, for the first time in a long time.  She props me back up and puts me on the road to action.  I am not alone.

Exposure and Response Prevention (ERP) Comes to Our Home

* Advisory:  This post has some photos of hands damaged from over-washing.  They may be difficult for some people to look at.

This is a nearly empty bottle of liquid soap.

It looks pretty normal sitting on the bathroom counter until you take a closer look.  That brown ring around the bottom of the bottle is dirt from our backyard.

The bottle of soap caught my eye several days ago and I snapped a few photos of it to remind myself of where we’ve been.  This bottle, with its dirt that is settled all around the bottom has been with us this entire summer – since before I even began this blog.  It is a remnant of one of Blake’s last OCD treatment sessions before we made the  heavy-hearted decision to stop therapy.  I am sharing it with you today, as a way to share what Exposure and Response Prevention (ERP) can look like.

What is ERP?

ERP is “the most important therapy in CBT for OCD,” according to the International OCD Foundation.  In a nutshell, ERP involves a conscious choice for a person with OCD to confront the items (thoughts, situations, etc.) that create discomfort and then not do the compulsions or rituals that would normally be provoked.   The idea is for the OCD sufferer to allow his or her anxiety and discomfort to abate naturally, without using rituals to cope and thereby creating healthier ways of coping.  This is commonly done with the help of a mental health therapist who is trained to do Cognitive Behavior Therapy (CBT) with OCD (for more information, Click Here.  Janet at OCDtalk has also written a thorough post on ERP.).

In our situation, Blake was really struggling with hand-washing compulsions (in addition to many others).  It was particularly bad at the time and he ran to the sink to wash anytime he felt the slightest bit “dirty.”  No amount of salves or special creams could heal the damage he was doing to his poor hands.  Below are some photos of how his hands looked around the time.  A reminder, these are 14-year-old hands.  They are painful for me to look at.  Anyone who pokes fun at compulsive hand-washing or thinks it is a joke has never lived with a family member who is suffering because of it.  The pain is real, intense and it interferes with day-to-day activities.

While Blake’s treatment team had done ERP work with him on the hand-washing at the office (they would touch “dirty” things and then he would not wash), we were seeing little impact of the exposures.  We all agreed at the time that Blake was “white knuckling” it through the exposure and avoiding truly immersing himself in it by reminding himself that he could wash as soon as he got home.  He never gave himself the opportunity to allow his anxiety to come down to a manageable level.  So, it was decided that one of his therapists would make the trip to our home.  The plan was for Blake and the therapist to “contaminate” our entire house so that Blake would not have a place of safety to run to in order to avoid his discomfort.

The Day Arrives…

Blake was in agreement with the plan, until the actual day arrived.  He was tired of painful hands and was hopeful that this exposure would finally put his hand-washing to rest.  He greeted his therapist, happily, at the door.  As they began to prepare for the actual exposure, he began to change his tune.

“I don’t remember actually agreeing to do this,” he told the therapist.  His anxiety was already on the rise, and he was trying to thwart the exposure from going any further.  His therapist and I reminded him of his desire to get better and advised him how important a step this was toward breaking free from the grip OCD had on his life.

Begrudgingly, he followed his therapist into the backyard where both dug into the dirt and began to put handfuls of it into a squirt bottle.  Then they returned to the house where they filled the bottle with tap water and shook it vigorously.  It looked like a muddy mess.  I silently gulped when I saw it.

“Are you really going to spray that mess all over my house?”

This was not going to be easy – and I really have no problems with dirt.  I can sit in it, get it under my nails, whatever…  But this – even I wasn’t relishing the idea of my house being sprayed with a bottle of dirty water.  The thing is, that was just the point.  Yes, it is uncomfortable to have dirt sprayed in your house.  It’s even kind of over the top.  BUT, it’s not going to kill anyone.  It is survivable – you can even thrive with dirt on your belongings.  The point for the OCD sufferer is to stick with the discomfort long enough to recognize that it abates and that they can have a good life without having to give in to their compulsions.

Reticent as I felt, Blake’s anxiety was rising through the roof.  He now wanted no part of this exposure.

“I changed my mind.  I don’t want to do it,” he stated.

His therapist reminded him that this exercise, as uncomfortable as it felt right now, was going to help put his OCD in its place.  She asked me to bring her all the bottles of liquid soap that were in the house.  I complied and sought them out.  Within a few minutes, I was back.  Blake was not in a good place.

The Battle Begins

While I’d been on my mission, Blake’s therapist had opened my bottle of dish soap (which Blake uses all the time to wash his hands) and poured a good amount of that muddy water right into it.  Blake was going to have none of that and before anybody could convince him otherwise, he’d dumped the entire contents of the bottle down the drain and placed the empty container in the recycle bin.

“Blake,” she reminded him, “we need to contaminate all the things you use to relieve your anxiety.  You remember; we talked about this.”

“No,” he said firmly.  “I don’t want to do it.”

She continued with her task and began to pour muddy water into the liquid soap bottles I had brought to her.  Blake’s face grew red.

“I said, ‘No’,” he stated.  “LEAVE.”

The therapist continued.  She was finished contaminating his sources of washing.  She took a rag and sprayed it with the dirty water.

“Come on, Blake.  Help me.  Let’s contaminate the house together. It’s better if you’re a part of this.”

“NO! LEAVE!”  His voice was powerful.  Anxiety was making way for fury.

“Remember?  You wanted to get better.  I’m not going to stop because I care about you.  I care about your hands and I don’t want you to have to keep living with OCD bossing you around and controlling your life,” she told him.

“THERE’S NOTHING WRONG WITH ME!!!!  I’M TIRED OF THIS!!! I’M TIRED OF BEING TOLD THAT I’M SICK!!!  SICK! SICK! SICK! LEAVE!!! GET OUT OF MY HOUSE!!!!”

Blake was absolutely getting out of control at this point.  He’d never said an angry word to his therapist before.  Now, he was screaming at the top of his voice and looking like a maniac. My heart was breaking for him.  I didn’t know whether to cry or burst out into giggles at the sheer anxiety the whole thing was creating in me.

His therapist continued with her quest.  She carefully wiped the dirty cloth over all the furniture, the walls and our personal belongings.  Our entire family was going to be in on this exposure.  But was Blake going to buy into it?

Blake Hits His Breaking Point

“I TOLD YOU TO LEAVE!!!  I CAN’T TAKE THIS ANYMORE!!  I’M JUST GONNA…”

Blake lunged for the pencil cup on top of the cabinet near him.  In one swift move, he pulled out the sharpest pair of fabric shears in the house and raised it up over his head, as if he were about to plunge it into someone.  But it wasn’t clear to me if he was going for his therapist or himself.

“Put it down, Blake!” I commanded, but my words weren’t necessary.  Blake’s hand hesitated in the air and his expression turned to horror and he began to tremble.

“What am I doing?  What am I doing?”

He ran down the hallway to the living room where he started sobbing.

“I’m sorry.  I’m sorry.  I’m sorry,” he repeated.

The therapist stepped outside to call her supervisor.  Blake looked at me through his tear-filled eyes.

“I wouldn’t have hurt myself,” he said.  “I just wanted her to stop.  I can’t believe how far I went to protect my OCD.”  He cried quietly for a few minutes until his therapist stepped back into the room.

“Do you want to talk?” she asked him.

“I’m so sorry,” he said.  “I wouldn’t have done anything.  I know what I need to do now.”

He walked down the hallway with a half-smile on his face and picked up the abandoned squirt bottle.

“May I?” he asked.

“Of course,” she answered.

He began to make his way through the house, squirting that dirty water on the walls and the countertops.  He covered his game consoles in it and his favorite sitting areas.  Tears streamed down his face, but now they were tears of relief.  He knew this was what he needed to be doing.  Then, he directed the therapist to his room.

“We need to do my room,” he told her and he contaminated his entire room with that water, making sure he didn’t miss a thing.

The Aftermath

Blake adjusted relatively quickly to his contaminated surroundings (although I did put away all sharp objects, just in case).  He didn’t care that there were pieces of dirt in the soap bottles.  He relished it when I reminded him that our entire home was contaminated.  He’d won another battle in the war on his OCD.  His hands healed.

But the other areas his OCD affected were untouchable.  He wouldn’t budge on them; held onto them like a badge of courage and battled us to keep them.  Of course, this lead to us ultimately discontinuing treatment and to being in the limbo that we are in.

Today I still find remnants of that exposure, though it is about 3 months in the past.  There are still places that are too high for me to reach where he aimed that squirt bottle – and I kind of like the bits of dirt that remain anyway because they remind me that we still live with contamination to some extent.  They also remind me how far Blake was willing to up the ante to protect his OCD, how powerful the disorder can be in asserting itself.  And I wonder when Blake will grow in his own power and desire to take it on.  We can only wait and see.

Related articles

• Let’s Talk About ERP Therapy (ocdtalk.wordpress.com)