Like just about everybody else, our family is staying at home as much as possible right now. I’ve completely moved my OCD and anxiety psychotherapy practice to telehealth, so I’m home almost all the time now (exceptions being to get groceries, and to walk around the neighborhood after sitting all day and forgetting to even go to the bathroom between patients). The hubby works in an essential industry so he still has to go in to work. Michael has seen all his plans, including work, go bust. He and Blake have a commitment to volunteering at the local food pantry, which seems to need them more than ever at this time.
The hubby and I are taking advantage of this unprecedented time with our young adult kids by watching family movies, playing games, and taking turns making meals for one another. We’ve always eaten dinner together as a family. It’s just different knowing they’ll be here for dinner every night.
Last evening, as we sat around the kitchen table, considering the news of the day, Blake suddenly became bright and animated.
“I’ve been a germaphobe my whole life. I wash my hands all the time and worry if they’re clean enough. I walk around feeling anxious every day. I almost never leave the house. Now, everyone is me!” and then he smiled a very satisfied smile.
We pondered this together as a family. Blake has struggled with contamination fears since he was very young. His anxiety can be debilitating. He self-isolates often (much to our chagrin, but apparently adaptive in the present circumstances), though he’s gradually improving on this. Now, it seems as though the whole world is living the way he is. For the first time in a long time, his world is the norm…and it feels good to him to belong. It’s not that he wishes this situation on anyone; it’s just good to feel like he knows how to live in the world the rest of us now find ourselves in.
Blake summed it up to us, as he shared his perspective, “Welcome to my world!” he said.
No, it’s not my birthday. It was, however, just my father’s birthday. He would have been 77. It was our family’s first birthday without him since his passing last March. It’s weird how someone who so frequently wasn’t there can leave such an empty space. Maybe that’s because, since he was frequently missing, it still seems like he’s back in the bedroom somewhere. And then something like a birthday comes along and you realize once more that you cannot actually go hunting through the back of the house for them.
Over the almost year since my dad has been gone, I’ve realized more and more how he probably had OCD and related disorders. And I missed them. How did I miss them?
The truth is, it’s not like I didn’t see the signs. I saw them perfectly well – literally right in front of me. An example: the other morning, as I was getting dressed, I grabbed a nail clipper to trim a broken toenail. An image came into my mind – my dad’s nails. His toenails and his fingernails. They were always picked and bitten. Not just a little. They were terribly, severely bitten and torn. Sometimes they were bloody. I think some were even gone.
Then another memory – his skin. My dad’s skin was scratched and picked raw, all over the place. A lot of times it was his legs. I remember my mom trying to remind him to stop. It was to no avail. He even saw doctors about it. I remember thinking my dad had a skin condition.
But…as I pondered my own toenail, I recognized that I was probably looking at Body Focused Repetitive Behaviors (BFRB’s) in my own dad. BFRB’s are what the mental health community classifies behaviors like hair pulling, skin picking, nail biting, and similar behaviors as. When a person does them a lot, they do damage. Bloody, scabby skin. Nails torn to painful levels. Hair missing. These behaviors, though not OCD, frequently go along with OCD.
How did I look at my dad’s skin and nails and never think “BFRB – get him some resources?” How was I blind to it? Was I so stuck in the role of child in my family that I never saw anything through my psychologist eyes? Would Dad have even acknowledged it was a problem that needed help? I don’t have answers, just my reflections.
If someone you care about is struggling with nail biting, skin picking, hair pulling, or similar behavior, The TLC Foundation for BFRB’s is a wonderful resource. In honor of my dad’s birthday, please help someone in need: https://www.bfrb.org/
A little while back I wrote a post about recognizing that my father, who passed away in March of this year, likely had Obsessive-Compulsive Disorder (OCD) (Read: OCD: It’s All In My Family). I’d been attending a conference when something I heard a speaker say sparked a recognition in me that my father probably had OCD, and I lamented not connecting the dots sooner, especially given that I am a psychologist who is an OCD and anxiety disorders specialist.
Since my dad passed, my siblings, my mom, and I have very slowly begun the process of sorting through some of his belongings. The other weekend, my brother and sister-in-law were in town so we spent some time looking through his things for keepsakes we would like. It was dusty, emotional, and sometimes humorous – and even just a bit surprising.
At one point, I perused the books on a shelf in the bedroom and noticed this tucked amongst the titles.
This is a book written by two pioneers in OCD work – Fugen Neziroglu, Ph.D., and Jose A. Yaryura-Tobias, M.D. The copy in my parents’ home had a copyright date of 1995. At first, I wondered if my mom might’ve picked it up to learn more about OCD after Blake was diagnosed. She’s always been interested and wanting to know more. But I wondered if that could be, given that this book was published more than a decade before Blake was diagnosed and four years before he was even born.
I shuffled down the hallway to find my mom in the family room. I showed her what I’d found. She seemed a little unsure, but she thought she’d picked it up for my father at some point because she must’ve thought reading it would be helpful for him. I asked if I might have the book and, having been given permission to take it, gently placed it on my bookshelf at my private practice office. There it sits, among my many other books about OCD and anxiety. I hope to read it soon, but for the meantime it represents a piece of my own history that I didn’t even know existed. I didn’t know I’d become an OCD specialist. I didn’t know OCD was in my family. Yet, there it was, just beneath my awareness, waiting to be discovered.
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.”
Austin, Texas. I’m writing tonight from Austin and the 26th Annual OCD Conference. And, Blake is here! The guy who wants nothing to do with anything OCD is here of his own free will. How’d that happen?
Truthfully, it was a strange turn of events. Michael was on a month long trip around the country with a friend from college. He was supposed to meet me in Austin and join me at the conference. Late the night before I was going to leave, his friend abruptly needed to cut the trip short for himself, leaving Michael stranded without a plan in the southeast. The hubby and I hurriedly helped him to identify a flight to get to the conference (he has some commitments here). I assumed he would fly back home with me, but the hubby had other ideas.
“What do you think about Blake joining you for the last two weeks of your trip?” he’d asked Michael.
“I’d love that!” was Michael’s reply.
Blake, surprisingly, was eager to join his brother. He even opted to come out earlier than necessary to see his brother present at the conference. Now, I must admit, I had ideas of grandeur that he’d attend all sorts of events here and enjoy the conference. I was wrong. I think attending Michael’s presentation filled his quota of OCD-themed material. So, he’s enjoying just hanging out, but, hey, he’s here! And he’s going on a spur of the moment trip to who-knows-where with his big brother.
Not bad for a young man who, six months ago, frequently slept til 10 pm and almost never left the house. I’m content.
As I write this, Blake is buzzing around the family room. He’s just come back from a four day trip to visit a friend at college in another state. He does a half-twirl and lifts his arms, Julie Andrews style, and sings the first few words from “The Sound of Music.”
“The hills are alive with the sound of music!!” he shrills in a high pitched falsetto.
It’s a thrill to see and hear. He’s already thanked me and the hubby twice for sending him on this little trip, which is surprising because last year when he went to visit the same friend he came home sullen, depressed, and in an existential crisis. When his longtime friend asked him to come visit again we encouraged him to go, but we held no illusions about how it was likely to go.
Those who have followed this blog for any period of time know that my 19-year-old son, Blake, has struggled with Obsessive-Compulsive Disorder and severe depression for some time. He has an incredibly difficult time getting out of bed. He has had a difficult time finding anything that makes life seem worth living, and he’s hung on to low level OCD rituals that he claims he does not see any reason to change. My approach of late has been listen, accept, and love (and also to push him to get out of bed and the house on a regular basis).
So why the singing?
So why is Blake singing? Well, first, he actually enjoyed himself. He and his friend went to the natural history museum. They looked at dinosaurs (neither of my boys has outgrown dinosaurs). They played a new game. He actually felt open to the experience. AND there was MORE.
“Guess what, Mom? I got up and got out of bed on my own every day!” he says with a huge smile across his face.
This is no small accomplishment. Getting out of bed has been his most difficult task on a daily basis for a very long time. When he was away at school, he frequently was unable to get out of bed until around ten at night (and then he’d be back in bed within a few hours). It’s beautiful to see him so happy about this, but what he says next is a shocker to me.
“You know what else I did? You’d be very proud. I didn’t check the labels on the soda cans on the plane – not on any of the flights I took there or back.”
What this means is, he stood up to his OCD! One of his rituals is checking food and drink labels. He’s always had a rationale for it and he claimed it wasn’t OCD that had him doing that. On this airline, they don’t bring a drink cart around. They offer you a drink and they bring it to you already poured in a cup. You don’t even get to see the container. Blake’s OCD says this is a no-no. He usually doesn’t order. This time he did.
I notice Blake’s shoulders hunch up just a bit as he shares about the sodas. There’s a smile on his face, but his body language shares the accompanying discomfort.
“You’re telling me you allowed yourself to be uncertain,” I say. “I can tell that feels good, but it was hard. Good for you.”
He nods. Then he reached his arms out once again, and sings once more. “The hills are alive…!”
As I finished my lunch that Friday afternoon, I had no idea what turn the day would suddenly take, nor did I realize the strength and capability my son, Blake, would demonstrate…
The house phone rings at around half past one. I’m seated at the kitchen table enjoying a quiet moment before I transition into an afternoon of work. Most calls to this phone are sales calls, so I resolve not to answer and opt instead to screen the call. No one leaves a message. Seconds later, my mobile phone rings. It’s my mom. I pick up at once.
Right away I can tell something is not right. I brace myself for what is to come. Someone must be injured or having a health crisis. I’m wrong.
“Daddy died,” my mom says. She cries and she sounds confused. I, on the other hand, go into automatic.
“Tell me where you are.”
It takes her a moment to figure it out. I can hear a voice in the background telling her where she is. She repeats this back to me, not fully understanding it, just parroting what she’s heard. I tell her I’m on my way.
“They want to know what to do with his body,” she says. “I don’t know what to do.”
“I know what to do,” I say, though I don’t exactly know how to do this. “I’ll be there as soon as I can.”
When I hang up the phone, Blake looks bewildered. I tell him what happened. I tell him I need him to come with me; I need his help. I see him slip into the same mode I’m already in.
“Do You Want Me to Drive?”
My nineteen-year-old son, the one who struggles to get out of bed because depression tells him there’s no good reason to get out, offers to drive me to his grandmother. He hates to drive, but he’s ready to help.
“What I really need you to do is to make phone calls while I focus on driving,” I say. “I’m not ready to talk to anybody, but I can tell you who we need to call.”
As we drive, I issue commands. Call Dad. Call your brother. Call the religious leader. Call Dad’s parents. Blake doesn’t miss a beat. He calls them all, although he’s uncertain about what to say. No, we don’t know what happened. Umm…my grandpa died. Please call me back.
“Where are you?” implores my mom. She’s on the phone as I’m pulling into the urgent care parking lot. “You don’t need to come.”
“I’m here and I’m coming in,” I say kindly yet assertively. I assume she’s in shock. Moments later I’m in an exam room where my mother is sitting alone, door shut, looking lost and confused. Blake watches as I wrap my arms around her and she allows the tears to flow. Blake joins in the hug.
“He shouldn’t have died,” she says. “He wasn’t that sick.”
“What happened?” I ask. I hadn’t been aware that my father wasn’t feeling well. She unpacks the tale of the past three days. Severe abdominal pain. Unable to eat. Lots of time in the bathroom. Finally forcing him to come to urgent care. Dressing him. Leaving to get the identification that he forgot at home while he heads to the restroom. Coming back to discover he’s never left the restroom. Calling for assistance. Watching helplessly as he’s moved to the floor and CPR is begun. Being told by the doctor how sorry he is for her loss. Her loss? He’s not that sick. Wait. What?
There’s a knock on the exam room door. It’s a sheriff’s deputy. He wants to know what we would like to do with the body – my dad’s body. He takes me into another room to give me details. He realizes my father had no plans for his death. He’s taken it upon himself to read Yelp reviews for mortuaries. He points me to one with five stars. I almost laugh. No. It’s okay. I know what mortuary to use. I don’t need to call the five-star-Yelp-reviewed mortuary.
I talk to the religious leader. I talk to the mortuary. I talk more to the deputy. My hubby arrives. I hold my mom. I ask the deputy to see my dad. I need to know that this is real. He makes me promise I won’t scream – I guess because this is still a working urgent care office and there are people in the waiting room. Where are the staff of the urgent care? Oh there they are – looking wide-eyed and dazed, unable to make eye contact with me.
And then I’m in the room with my dad. There’s a sheet pulled over him. I only see an arm hanging down the side of the gurney he is on. The deputy stands in the room watching me, gently, but there to make sure nothing is disturbed and ready to intervene if I suddenly lose it all. I gently pull down the sheet, just below his neck. And it’s him, looking just like himself, like he’s in a daze, his eyes open, his lips slightly parted. Suddenly I feel like the adult in the room. My dad is helpless. I am strong. My dad cannot do for himself. I must do for him. It is my job to make sure that the vessel that held him these 76 years is properly cared for.
“Oh, Dad,” I say out loud, and I touch his hand, hold it. It is cold to the touch like I’ve always heard, yet I’m still surprised how quickly our warm-blooded bodies cool to room temperature and even feel chilled. I plant a kiss on his forehead and I study him for a moment. My sister and brother cannot be here and I feel the responsibility to bear witness.
The deputy follows me across the office, by the urgent care staff, still with their wide eyes. As I’m about to re-enter the room my mom is in, I catch a glimpse of Blake walking down the hallway deep in conversation with someone. He’s relating the details. I watch him do this again and again in the three hours we wait for the mortuary transport service to arrive. My heart wells with love and respect. My beautiful son is not the young man with depression and Obsessive-Compulsive Disorder. He is the capable young adult who places calls to family and friends, close and distant. He is the one who keeps watch over me throughout the drive and wait at the urgent care and, later, the one who takes command of my car when I abandon it to drive my mother home. I see all that he may grow to be and I make note of it.
Finally, the transport workers arrive. They drape an ornate cover over my father. It makes the contents of the gurney they must now roll out of the building appear less stark. They roll him out of the exam room, through the bullpen area of the office (staff still wide-eyed and unspeaking), and out through the waiting room with its patients sitting in the neatly arranged chairs. It is awkwardly silent. No one says anything to us.
“That can’t be good for business,” my hubby says in a good- natured way to the office manager, in an attempt to break up the silence. In the moment, I’m the only one who sees the humor in this. I go back to get my mom.
Late that evening, exhausted, I thank Blake for all he’s done today. Thank you for looking after me and making sure we got to the urgent care office safely. Thank you for looking after Grandma. Thank you for making and taking all those phone calls. Thank you for getting my car to Grandma’s house.
A few days later, we leave the house early to drive to my dad’s funeral and burial. Blake is up and ready to go. He notes how he struggled to get out of bed this morning, but then he remembered his grandpa. Grandpa struggled to get out of bed himself most of the time, notes Blake. In his honor, and because Grandpa could not get out of bed anymore, Blake chose to do the difficult thing – he got out of bed. In that moment, I am so filled with love for my boy.
This post is in memory of my father, who struggled with substance abuse, with depression, with body focused repetitive behaviors (BFRB’s), and with undiagnosed Obsessive-Compulsive Disorder (OCD) for as long as I knew him. He gave life to three human beings – two of whom I am blessed to call my brother and sister. Dad, I hope your legacy is that we learn, we grow, and that we help ourselves and others to have hope and to seek help when it is needed. Blake chose the title of this post, “All Good Things…,” noting the dual symbolism of all good things coming to an end, as well as the fact that it is the title of the last episode of “Star Trek: The Next Generation.” His grandpa, my dad, was a devoted longtime “Star Trek” fan. He taught me to deeply appreciate science fiction, which I do to this day – as well as the occasional B horror film.