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 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:
I haven’t written much lately about Blake’s OCD. Though it’s been in a “waxing” period for some time now, there are still “rules” Blake follows all day every day. This was a moment we had last week.
Blake is helping me make my bed and we are chatting as we work. The only problem is, our cat isn’t cooperating. He insists on walking all over the blankets and sheets, making it nearly impossible to move or straighten anything without difficulty.
Impatient with our furry companion, Blake picks up a pillow and starts swatting at the cat. He’s not actually hitting him, just trying to encourage him to move off the bed. He swats repeatedly, but it’s a fruitless maneuver. The cat only moves a few feet so that Blake has to move to another part of the king size bed to reach him.
I watch this scene with interest. It’s a pretty ineffective technique for moving a cat who is determined to stay put, yet Blake continues to try to use it.
“How about if you actually give him a little nudge with your hand, honey? Or maybe pick him up and put him on the floor?” I finally ask.
“Then I’d have to go wash my hands and I’m trying to wash my hands less,” he answers.
I don’t say anything. My silence obviously speaks to Blake who asks me, “That’s not unusual, is it? People wash their hands when they touch their pets, right? Right?”
“Um…that’s not what most people do. I mean, most people don’t run to wash their hands immediately after they touch their pets.”
“No. They don’t.”
“Ew. I don’t think that would be very uncomfortable.”
“Okay,” I say.
“Do you think I’m wrong?”
“Blake, you asked if other people wash their hands when they touch their pets. I answered you that most people don’t.”
“But am I wrong?” he asks.
“Only you can decide that, honey.”
“I don’t like to feel uncomfortable,” he answers.
“I know,” I say kindly. “Maybe, if you wanted to, you could expand the limits of what makes you uncomfortable by just waiting a tiny bit longer to wash after you touch our pets.”
“Thank you, mom,” he says.
That’s my signal that the message is received and he’s done with the conversation. Yet, this is the first time I can ever recall that Blake is questioning his behavior. He’s always just asserted that he is the way he is and that he thinks he is right. Today he is questioning whether his rules about what’s contaminated are in keeping with what others do. I don’t know that it means anything…but maybe it does.
Blake has been home now for just over two months. It’s been nice having him home. He’s been more self-reflective and more open to sharing. It’s also been a relief to know he’s eating and taking his medication more regularly. The hubby and I have been able to be calmer with him than before and less impatient with him in many ways. Yet, at the same time, things are still so uncertain with him and it’s tough to know what ways things will go.
He wants to be a writer and he spends his days working on a book he’d love to publish. Some days he write a lot. Other days – not so much. The topic of his book is a secret. I only know that it is a work of fiction, maybe even sci-fi. He ponders whether he should return to school at some point. And sometimes he’s very sad and lonely.
Recently, when he was feeling very sad, he shared that the only things he really looks forward to are eating and sitting in front of his space heater. I reminded him of how, a month ago, he enjoyed playing video games with his brother and a friend.
“I think that you’re actually a social guy and that it’s important for you to get out of the house and be with people on a regular basis.”
“But what would I do?” he asked.
“Maybe apply for a volunteer position where you’re required to show up at the same time every week?”
With a little more talk, he agreed to try. He reached out, with my help, to several organizations in our community and started a weekly position with our local food pantry. For the past three weekends, he’s ridden in the big truck with the driver, picking up donations from local grocery stores. It’s heavy lifting work and is probably good for his mood. He and his driver sound like an odd pair, yet Blake has taken to this young man (who is about 10 years older than him). Blake has even learned to appreciate a new music genre: Hick Hop! He actually looks forward to going each time.
In addition, Blake has started a blog. Again, it was at my urging, but he joyfully wrote his first post. It’s a humor blog and that first post was pretty hysterical to all of us. We’ll see where it goes. The hubby and I hope that, little by little, Blake will build up momentum to living in the world and taking more steps on his own.
Blake has been at college for an entire semester – or one week shy of it anyway. It began unceremoniously, with Blake declaring that this would be the shortest college experience of anyone in our family and dreading the start of classes. I flew back home fearful of the unknown and how my youngest might fare.
It’s been a semester of ups and downs. The downs include Blake not making it to class many days, him sleeping way into the evening on days when depression made bed the only option that felt viable, MANY assignments never turned in or even attempted. It included many phone calls from Blake saying he just couldn’t do this, that he needed to drop out. And there were the tears Blake cried over not feeling adequate, losing hope, and no longer knowing what his passion is.
The ups included Blake cooking for himself, grocery shopping, keeping up on haircuts – and being the only one in the apartment to actually clean the bathroom (though that may have been prompted by OCD fears – I digress). They include Blake joining clubs on campus and even attending murder mystery special events (something he rarely did while at home, and then only with much prompting). In short, my 19-year-old moved to a new city, lived in an apartment with three others, shared a room, and took care of the basic things he needed to in order to survive. I’d venture to say that joining clubs is a step beyond the basics.
Still, college itself definitely did not go well. I don’t know how well Blake performed in any class; I don’t know if he even knows. He has decided that this is just not the right time for school for him and he is coming home. He’s not happy about that. In fact, he feels like a failure and fears he’ll only continue to fail and to suffer emotionally. He hates the idea of being an adult in his parents’ home (and cannot seem to recognize that he is certainly not alone in that status).
Late next week, I will fly to meet him. We will pack up his apartment and come home. But we won’t be flying. The hubby and I felt that being back home in a matter of hours was too abrupt a shift from what we think was a growing experience for our boy. So Blake and I will take a road trip home. We have no planned route, no place we must stop – only an ending destination of home in a time span of three days. There will be a lot of open road and empty expanses on our way. My plan is to remind my boy of the successes he had and hope that he can find a way to hold onto those, even for a brief moment.