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.
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.
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.
My dad died four weeks ago. Just like that. Suddenly. Gone. He hadn’t been feeling well for a few days. I didn’t know that. All I know is that on March 7th as I finished my lunch my mom called – first on the house phone and then on my cell, which I picked up right away.
“Where are you?” she asked, choking back tears that she couldn’t hide. When I assured her I was home and safe she continued. “Daddy died,” she gasped, and she cried out loud. She wasn’t even quite sure where she was in those moments. Someone helped her to tell me the address she was at. It was an urgent care office not too far from my parents’ home. I went to her immediately.
There are more details in the aftermath. Those can come at another time. For now, suffice it to say it was complicated with my dad. My sister, my brother, my mom, and I knew for the most part that we could count on him in a crisis. I’m pretty sure he loved us all – of course, we each have different impressions of our relationships with him. On the whole I’d say we are each grappling to make sense of a man who was difficult to really know and who struggled with demons none of us completely understood.
Did Dad Have OCD?
Less than three weeks after Dad’s death, I went to Chicago to attend the annual conference of the Anxiety and Depression Association of America (ADAA). It felt good to get away and to focus only on myself and on what I love doing – learning about anxiety and OCD and continuing to develop my craft as a specialist. On day two of the conference, I attended a session called “Treating Co-Occurring Anxiety and Substance Abuse: It Can Be Done,” by Patrick McGrath, Ph.D. (of AMITA Health/Alexian Brothers Behavioral Health Hospital). From experience, I knew Dr. McGrath was an excellent presenter and that I’d likely come away with useful information. What I didn’t expect is to have a revelation about the man who gave me life.
Less than a half hour into the session, Dr. McGrath noted the common reward system that both opioids and compulsions have for sufferers of Obsessive-Compulsive Disorder (OCD). Something clicked in my head. One of the demons my dad long struggled with was addiction to opioid medications. Did he also have OCD?
I texted my mom from the session (sorry for texting during your presentation, Dr. McGrath). “Mom, do you think Dad had OCD?”
Putting the Pieces Together
Her reply, ten minutes later was affirmative, “Yes. It got worse as he got older. He was obsessed with trying to keep his glasses clean.”
I sat with this for a few minutes and tried to absorb it. Could it be? Maybe Mom doesn’t realize I really mean that he had Obsessive-Compulsive Disorder. I texted my brother and sister and told them what I was thinking.
“You mean like measuring 2 halves of a turkey sandwich with a scale and having a fit when they aren’t perfectly even?” my sister wrote. Oh, yes, how could I have forgotten that?
“Buffing the kitchen table with his auto buffer? Refinishing spatula handles so they’re perfect? Sharpening and re-sharpening knives?” asked my brother.
“We found cases of eyeglass cleaner,” my sister noted, referring to when we’d straightened up his room shortly after he’d passed.
“Yeah, he used to get sooooo pissed if his glasses weren’t perfectly clean,” my brother remembered.
Little by little, the pieces started coming together. Things we’d regarded as quirky about my father while we were growing up were strong signs he’d had OCD. I recall times my brother, sister, and I sat, waiting in the car to go somewhere for what felt like a long time, while Dad was in the house doing something. What was he doing? Checking? I’m not certain of the answers to these questions, but in those moments, sitting in Dr. McGrath’s presentation, I felt a growing sadness.
How Did I Not Know?
I am a specialist in treating OCD. The great majority of my psychology practice is kids and adults with the disorder. I blog about OCD here. I speak as a professional at conferences about it. I educate others about it in writing, in webinars, and in other formats. How could I have missed the signs? Was his substance abuse in part a way to manage (albeit in a destructive way) the nagging thoughts coming from his own mind? Did he know what he had?
“I keep thinking I wish he’d gotten good help/treatment for this stuff. Or known that he wasn’t alone in it,” I texted my siblings. “I feel dumb for not putting it together…. Like I should’ve realized it of all people.”
All In the Family
When my son, Blake (now 19), was seven I recognized that he had OCD. I was already a child psychologist, but I only recognized the symptoms when they were about the stereotypical fear of germs. I’d missed it when, at least a year before, he’d told me that he had “bad thoughts” in his head. I felt awful when I realized that, and I dedicated myself to educating others so that the signs wouldn’t get missed. But I missed them in my own dad. And he died without a community – without knowing the amazing OCD support community that I’ve grown to appreciate so much.
When Blake was first diagnosed, his therapist asked me who else in our family had OCD.
“No one,” I told her. The hubby and I both had our own struggles with anxiety, but no one had OCD.
I was wrong. My brother bravely told me a few years later about his own OCD and the thoughts that taunted his mind. And now I realize that my dad probably struggled with it for goodness knows how long.
My son. My brother. My dad. OCD is all in my family. It runs in families. If I missed the signs, anyone can. Learn about OCD; educate yourself to the signs. There is help and there is support. No one needs to suffer alone.
There is help for Obsessive-Compulsive Disorder. To learn more:
This morning Blake is up early, even earlier than I am. He is eating breakfast when I come downstairs.
“He’s stayed up all night again,” I automatically think. To be perfectly honest, it’s a fair assumption. After all, he didn’t get out of bed until around 9 pm last night. His dad and I went to his room several times during the day encouraging him to get out of bed. It’s a familiar pattern – one that leaves me with a sense of hopelessness that sometimes spreads within me.
“I will,” was all we got – and then he plodded downstairs about an hour before the hubby and I went to sleep.
Blake heads upstairs – to go to bed, I assume – and I offer to make him a cup of coffee. To my surprise, he answers, “Yes.”
When I enter his room he is sitting in front of the space heater. I hand him the warm mug, plant a kiss on his cheek, and shut the door.
“Mom?” I hear from behind the door. I open it back up. “I didn’t stay awake all night. I actually went to bed a little after you and Dad.” He goes on to explain to me how it is possible to go back to sleep after sleeping nearly twenty-four hours.
“I’m happy,” he says – words I haven’t heard from him in some time. In fact, I can’t remember when he’s said that. “I got up two days with my alarm this week,” he notes, “and while it might not have been in a row, it’s more than I’ve gotten up on my own in this entire month.”
He goes on to show me words and symbols of motivation he’s written on a white board near his bed. On that board are the letters “INV.” He wants me to see what they stand for and motions me over to his laptop. “Invictus” is a poem written in the 1800’s by William Ernest Henley. For those who do not know the poem or the poet (I didn’t, though perhaps I should have), Henley suffered periods of extreme pain in his early years due to tuberculosis of the bone. He saw one of his legs amputated below the knee due to this. And, yet, his “maimed strength and masterfulness” inspired his friend, Robert Louis Stevenson, to create the character, Long John Silver.
Blake shares the poem with me, noting that he reads it to himself nightly. He identifies with not only the words of the poem, but with Henley, himself. After I read it, I cry and we hug. I am leaving the words to the poem below:
by William Ernest Henley
Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul.