It’s a big week upcoming for OCD! Saturday, October 10, is not only World Mental Health Day, it is the Virtual 1 Million Steps 4 OCD Walk. Usually the walk is a live event that takes place in various places around the world. Groups meet and participate in activities along with the walk. This year, people will walk on their own and, perhaps, participate in activities virtually. Yours truly has her own shirt and will be walking with the hubby around our neighborhood.
Then, Sunday, October 11, OCD Awareness Week begins. Above, I’ve posted a photo from the International OCD Foundation. It shows a variety of activities going on during the week to raise awareness about OCD. Have OCD, or a loved one or friend with OCD? Check out an activity and share with others.
When I first began to prepare my practice for the possibility of a pandemic, I failed to imagine the potential impact on my own emotional well-being.
In February, I heard the murmurs. On the fringes of my OCD support group some members were talking about their “novel coronavirus” fears. I chalked it up to OCD playing its tricks. Surely we had nothing to fear from this faraway virus. In early March, I shared with patients my plan to go virtual if the virus made it necessary to close my office. I never imagined I’d actually be doing it, but the American Psychological Association had recommended that psychologists have a plan. I’m a rule follower and it seemed prudent, so I made a plan. Just over a week later, I saw my last patient in the office and was fully a telehealth provider by the next day. Five months later, I’m still providing OCD and anxiety disorder treatment from a little corner in my home.
“So, what’s the big deal?” one might wonder. Indeed, I am lucky – blessed even. I’m in a career where I can work from home, as long as I have a secure internet connection and a private space. And, hey, research demonstrates that OCD treatment via telehealth can be very successful. I’m luckier still that I already did some of my work via secure video, seeing patients who didn’t have an OCD/anxiety disorder specialist in their corner of the world (actually, not the world – just their corner of the state I’m licensed in, but I digress). I didn’t have to make the switch to telehealth overnight without previous experience or training. Great, right? Grab the morning coffee and head to the office in the corner. No commute.
Sure, there’s the adjustment to the new working setting and the unintended consequences of that shift (can everyone say “chronic pain from poor ergonomics?”). That part, I’m dealing with. The unexpected part, the part I think the mental health provider community is going to be dealing with for an unforeseen amount of time, is the unprecendented demand – and the long term toll on our well-being. You see, here’s what happened: my state went into shelter-at-home. Most of my patients stayed in treatment; a few decided to take a break and wait things out. There were crickets – silence – where there used to be new referrals. My free support group went virtual and saw better attendance than ever – with the same faithful attendees. We fumbled through this together. Many of my OCD patients seemed better prepared than most to deal with the newly-named COVID-19, their skills at coping with uncertainty being an asset. All in all, it was relatively quiet, minus the shifting and adjustment. It was actually eerily quiet – for a bit. Maybe I should’ve taken note of what happens before a tsunami – the drawback of water from the shore before the deluge.
An Emotional Toll
It started with patients who were on an “as-needed only” basis requesting to come back in for regular sessions. The stress of the ongoing isolation and the unknowns taxing their coping skills (as I write this, on a weekend morning, yet another of these has called asking to come back). Then those who’d taken a break mid-treatment during the shutdown wanted to return. And then came the new referrals, people who I’d never seen before, calling and pleading for help. Struggles with their mental health that had been manageable before were overwhelming them now. It continued until my practice was bursting at the seams, until I just could not fit anyone anywhere else.
My support group went similarly. In non-COVID times, one or two new inquiries in a month was a lot. I began to see one a week, then a few a week, then eight in four days. I couldn’t keep up with screening the new referrals. I wondered if the group and its community feel could withstand the constant flow of new attendees. I started to feel burned out.
I’m normally known as the therapist who connects people with therapists (“Call Dr. Angie. She’ll be able to help you find someone good.”). I don’t like to hear that a person in distress has been unable to find a mental health professional who can see them. I listen to them. I find out their needs and I take it upon myself to find at least a few therapists in my network who are open and ready for their call. In recent weeks, I grew weary of the constant need. I took a step I’ve never taken before in my nearly two-and-a-half decades in private practice. A week ago, I changed my voice recording: “I am unable to return calls from new referrals.” It kind of devastated me to do that. The group followed on its heels two days ago. Now a message about my group reads, “This group is currently not accepting new members. Please check back in the future.”
It feels like I’ve been in a shipwreck. People all around me are drowning – or at least feel they are. They see me as the stronger swimmer – the one who can bring them to safety. They reach out with their hands. Their voices beseech me to help them. But there are endless numbers of them. I can’t see them all, but I can hear them. What they don’t realize is that on top of reaching out and pulling person after person to safety, I’m in the water, too. And I’m swimming and dog paddling as best as I can – and I’m getting exhausted. But, still, they call out. I want to help them all. I don’t want to watch anyone drown. But if I keep going, I may drown myself. I feel beyond torn. What choice do I make? Save one more? Rest, so I can help more in the future? And if I do rest, how long will I be haunted by the sounds of drowning voices, pleading to be rescued?
Looking After Our Mental Health Providers
I’ve come to believe that my experience is not at all unusual among my colleagues. I frequently see shared experiences of being “exhausted” and “burnt out.” Our practices are brimming with need. Many of those who come to see us have reduced or, increasingly, limited ability to pay us. We are in this field to help. It flows through our veins like our lifeblood. We respond to those who are struggling. But now we are struggling, too.
In the past, a mental health professional experiencing exhaustion, overwhelm, or burnout would pull back, take care of themself, perhaps even see a mental health provider. But now our fellow mental health providers are coping with the same situation. We’re all in this pandemic together. We are all being called upon to do more. We’ve been asked to see first responders who are coping with the distress of caring for the ill. I’d venture to say that we are the forgotten first responders, the ones for whom the flow of the affected is not letting up. Not now. Not in the foreseeable future. And I am fearful of what may become of mental health if our professionals stay on the current path, veering ever-closer to mass burnout.
I do not have answers; just thoughts about the direction we might go in. I know that I cannot help every single person in need right now. If I’m to go on to help more people, I’m going to have to step back and do what is necessary to build my own emotional strength back up. A mental health provider is ethically bound to step back when they see their own emotional health suffering. We must be in a good place to help our patients get to a better one than they are in.
To my fellow mental health providers: I see you out there. I know your level of caring and dedication. I know the need out there calls to you. The need will far outlast the physical distancing measures. Just remember that you are needed in as healthy a place as you can be in. It’s not a case of “better to give compromised mental health services than no services at all.”
It’s been suggested that the medical community look at this pandemic as a marathon, not a sprint. I suggest mental health providers look at it as something else – a relay race, perhaps. None of us can marathon forever, but maybe, just maybe, if we can keep passing the baton to one another, and give each other a break – even reach out to one another for reprieve and support – we can go the distance. For sure, we will have stories to tell, and regrets of what we could not do, but the work we do is far too important for us all to burn out at once. Obviously, I wrote this because I am struggling. Now to take my own advice.
*If you are thinking about suicide or have a loved one who is struggling with thoughts of suicide, please call the National Suicide Prevention Lifeline at 1-800-273-8255 (In the United States. In other countries, please reach out to a similar service in your country).
“I called the suicide hotline the other night.”
Blake casually drops this line as he and I sit lazily on the patio chairs and cushions in our yard. I do everything in my power to keep myself from reacting too strongly. I want to encourage him to keep talking, not shut him up with my own anxiety.
“You did?” I ask. “When was that?”
“Saturday night. I just couldn’t sleep. I couldn’t stop thinking about what a failure I am and I thought, ‘Maybe I’ll check this out.’ Honestly, I expected it to be a waste of time, but I’m actually glad I called.”
“I’m so glad to hear you called,” I say. “You must have been feeling pretty awful to reach out.”
“Yeah. I tried the text line first. But there were a lot of people ahead of me. I waited over half an hour. I decided I’d try the actual phone line because the service suggested it as an option. I thought I’d wait even longer, but there was someone on the phone with me in about three minutes.”
He pauses a bit, then he continues, “I thought it would feel stupid, but I have to say, it felt so good to tell a stranger how awful I feel. I told them about stuff that I’ve never told anyone else. I felt like what I’m so upset over is so petty, but the person on the other end of the line said, ‘That sounds so hard.’ It felt so good to hear that.”
We go on to talk about more of the particulars. My young adult son shares how he struggles to decide if he should live or if he should die. I tell him how courageous he is for reaching out, and for being honest with me now. But afterward I am hurting so much. I want to cry and feel the relief of deep, cleansing sobs, but the tears won’t come.
It’s well after midnight and my husband is asleep. I turn to the internet. I’m not sure what I’m looking for, but my son (my beautiful son) – the one I carried when he cried as an infant, explored the world with, delighted in each new step he took, soothed through huge spikes of anxiety and OCD triggers, and championed through his many brave steps – frequently feels that his life is not worth living and that he is not worth the effort of saving. I’m looking for something to help me help him see that it IS worth it. I feel desperation…and then I realize – it’s not my choice to make. It is his life and I cannot coax, cajole, or convince him to stay here. It is selfish of me to do so because, while I’m thinking of him, moreso I’m thinking of my own pain.
And that is when I realize that I am the one who needs help. I have to take care of me right now. It’s not about saving him. Yes, he could use help and support when he chooses it. But right now it’s about taking care of me so that I can live with a family member who I love fiercely and who is frequently contemplating suicide. That is a lot to navigate alone and, until now, I’ve pretty much done just that.
Maybe it’s because I’m a psychologist and I think I’m supposed to know how to handle suicidal thoughts, but I suspect that it is also about being a mom. As parents, we are supposed to take care of our children. We worry about them from the moment they are conceived until we draw our last breath. When they struggle, we look to get them help. We forget that we must be in good shape to be a support.
The next day, I call the suicide hotline myself. It had never occured to me that I could call the hotline as the parent of someone who was dealing with thoughts of suicide. As much as it sucked to make that call, it felt so good to be heard and held by another. That call led me to reach out to a suicide prevention center and today, in less than an hour, I will have my first consultation session with a specialist. It’s not for Blake. It’s for me – so I can learn how to take care of myself. I’m nervously optimistic. I’ve lived with my son’s suicidal thoughts for so long, never considering how I was doing. Let’s see where this journey leads.
This blog will be seven years old in July of this year. When I began writing it, Blake was a 14-year-old who was tortured by his own thoughts, but refused treament for his Obsessive-Compulsive Disorder (OCD). I was a terrified mom, one who struggled to stay out of her son’s compulsions, despite being a psychologist who specialized in treating OCD, and who should have known better. In three months, Blake will be a 21-year-old man – one who has grown tremendously over the years. As for me, I hope I’ve grown as well. Now, as the world struggles with fear and uncertainty and our family practices physical distancing to do our part during a pandemic, I am reflecting on where we are.
My blog began with a post titled, “We Are Here.” I was in despair and fear when I wrote it. I didn’t know where our journey would take us, but I did always have hope (though sometimes it was barely holding on). Over the years, there have been ups and downs. At first, Blake’s OCD was a constant in our lives. There were arguments with his brother, tears for each of us, and family events lost. There were also small triumphs. Then, the rituals went mostly underground and depression took center stage. Though Blake went off to college at 19, he came home at the conclusion of his first semester after spending much of it in bed and losing so much weight I barely recognized him. Through it all, Blake did not want to talk about OCD.
Lately, though, something is changing. Blake has been sharing his inner world more and more. He’s been spending his time writing. He’s been working on a fiction novel (it’s at just over 200 pages as I write this post), and he has been writing for an online gaming news site. The writing has been incredibly challenging – the novel in particular.
“My mind,” he told me one day the other week, “it never stops. I keep thinking ‘what if this’ and ‘what if that.’ It loops into so many things. I think about why I’m not a good person, or what if I’d been born into a different family – whatever it is, I just can’t stop it. It can go on the whole day. It’s why I like to sleep. It’s the only time I get a break from my thoughts.” He shares that even his movements are dictated by OCD – they are subtle, but even walking must be done according to rules.
“Thank you for sharing that with me, honey. You’ve given me a window into what it’s like to be you,” I answered, realizing that my son’s OCD never really took a vacation. It morphed into mental rituals – tricks and contortions he must do in his head until his brain finally feels satisfied for just a brief moment. I realize it is a true feat that he’s written so much of his novel thus far. And it is GOOD STUFF – really good.
Earlier today, there was another “a-ha moment.” Blake finished a volunteer shift at the local food pantry, came home and wrote a quick gaming article, and then disappeared. I found him a couple hours later fast asleep in his room. I coaxed him out of bed and into the family room.
As he became less groggy, he shared that he’d gone to sleep because of thoughts that he wouldn’t hit his writing goal for the day in the time he had. “I was afraid and I couldn’t get out of my head,” he said.
“Well,” I said, “maybe it’s time to face that fear and start writing.” A short time later he did and soon thereafter he called to me.
“You know what, Mom? Earlier, I didn’t write because I was afraid. Now, at the rate that it’s actually going, I realize I would have written even more than I expected in the time that I had. Ironically, it’s my fear that got in my way – giving in to my fear may have prevented me from reaching my goal.”
In my mind, that was a wise observation. It wasn’t ability or creativity that held Blake back – only his own fear. By listening to his fear instead of to what was important to him, he was held back from his goal. It made me think of a quote I’d heard long ago by Franklin D. Roosevelt. It turns out it was from his inagural address in 1933, at a time when the United States – and the world, for that matter – was in the depths of a depression and faced much uncertainty. I’ll conclude this post with that quote. I think it rings true for Blake’s recognition today and, perhaps, for all of us as we face our own challenges in the form of COVID-19.
“...the only thing we have to fear is fear itself—nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.“
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.
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.”
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.
I’m very excited about today’s post because it is written by my brother. My brother shared with me that he had Obsessive-Compulsive Disorder (OCD) several years after my son, Blake, was diagnosed and treated for it. He’s been incredibly private about it. Now, for the first time ever, he’s putting into writing what OCD is like for him. This is my brother being brave – and I’m ever so proud…
Me and OCD – Part I
If you asked someone what they know about OCD, my guess is they’d either ask you to explain what the acronym means or they’d tell you about the funny little man who stands in front of his house continually checking to see if his door is locked. When I was a kid no one really knew what OCD was and now-a-days a lot of folks use it as a form of speech, “Oh it’s just my OCD kicking in.” But what’s it really like living with OCD? Frustrating!
I’ve never been formally diagnosed with OCD by a mental health professional, but it sure feels like I have it. I didn’t seem to have it really bad as a kid. I can remember some tendencies, but it really started to kick in when I was in my 30’s. However; I can remember one incident when I was younger that has stuck with me.
I didn’t think much of it and just chuckled along with him cause I really didn’t understand what I was doing.
My earliest memories of OCD are in the form of hand washing. My parents had a boat and everything is dirty and salty on a boat that sails in the ocean. While sailing along one time I had the urge to keep going below deck and wash my hands. Not with soap, but just rinsing. I’d rinse, run back up the ladder, run back down, rinse, etc. I remember my grandfather watching me and getting a chuckle out of the repetitive nature of what I was doing. He was laughing because the repetitive nonsense of it. It is strange and confusing to folks, and one result of it all is a bit of uneasy comedy for the viewers. He wasn’t laughing cause he was a jerk, he was laughing because it made no sense. If you’ve ever done any ocean sailing you understand. I was covered head to toe in salt, dirt, and grime, but kept thinking I’d make myself “clean” by using water on my hands. I didn’t think much of it and just chuckled along with him cause I really didn’t understand what I was doing.
For some reason in my 30’s my brain chemistry must have changed because OCD started becoming a major pain in my butt. It started with little things, like making sure my parking brake was down before I went driving and making sure it was up before I’d leave the car. Then it became the door locks. The locks on my car started to have trouble and I could no longer rely on them locking when I pressed the remote. So I started a ritual. Ah yes, the ritual! Check the driver’s door, behind driver, passenger, behind passenger. One lift of the handle became two, two became four and so on. Next thing you know I’m pulling on those darn door handles like there’s no tomorrow! My wife had to keep telling me that I was going to break the handles!
Let’s talk about the ritual. Everyone has rituals. Most folks without OCD would have pulled on the door handle once, noted it’s locked and go about their day. Checking that door was their ritual and they satiated the “is the door locked” anxiety by checking once. But here’s the OCD rub. Once just doesn’t cut it anymore. I want to be sure so I check again, again, again, again and the problem is once I get into the repetitive ritual, I actually start getting MORE anxiety so I check again and again and again. Sensing the OCD catch-22 here?
One lift of the handle became two, two became four and so on.
And OCD doesn’t just affect you, it affects everyone around you especially your loved ones. I don’t think I’m a very selfish person, but OCD is an extremely selfish illness. Because I’m stuck doing rituals, I’m not doing what I need to be doing, so everything around you starts to suffer. Plus I started dragging my wife into the OCD nightmare. Since I couldn’t satiate my anxiety by checking the locks myself, I started sending my her to check! Thankfully she stopped that ritual real quick! She told me she’d wait for me, but *I* needed to go check and she wouldn’t. At first I was angry that she wouldn’t enable me, but I soon came to realize that it helped me immensely!
So many rituals, so little time…. So how do I cope? Discussing OCD with my doctor and medication has helped me a bit, but also thinking about the fallacy of the OCD ritual. Let’s take the hand washing one. Yep, I still suffer from that one too, but I try and reason with myself now. My hand feels dirty, but it’s been sitting on my arm. I tell myself that if my hand was dirty, my arm would be dirty now too! Normal folks would think that I’d now think everything was dirty and I’d have to take a shower. Not for me! The craziness of my OCD doesn’t register the arm as dirty, just the hand. So I look down at my arm, no dirt and it doesn’t feel dirty. So maybe my hand isn’t dirty either….
How about the locks? Instead of getting sucked into the OCD ritual repeat, I try and make the look or the handle pull mean something. I try to not just do the ritual to do the ritual, but to REALLY concentrate and tell myself, “Yes the door is locked.”.
It hasn’t been easy and every day is a struggle, but I don’t want to be that selfish funny little man that is stuck at his door all day long. I just want to be normal.