I Just Want to be Normal

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.

Advertisements

OCD: It’s All In My Family

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:

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

Anxiety and Depression Association of America: https://adaa.org/

Peace of Mind Foundation: https://peaceofmind.com/

Intrusive Thoughts: https://www.intrusivethoughts.org/

Unstuck: An OCD Kids Movie: https://www.ocdkidsmovie.com/

Invictus

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:

Invictus

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.

Don’t Other People Do That?

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.

Our cat presents a challenge for OCD’s contamination rules

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.”

“They don’t?”

“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.

Back Home

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.

Lost Enjoyment

“I don’t know if this is depression or not,” says Blake, “but it’s like there’s always a grayness over everything I do.”

Blake and I are preparing dinner together. The hubby and Michael are upstairs playing a video game and Blake has come down to help me with something in the kitchen. He had been upstairs with his dad and his brother and he is noticing how nice it is to have someone to play his new video game with. This causes him to recognize the stark difference between how he feels in this moment and how he feels much of the time.

“The thing is, for the longest time now, I’ve had trouble enjoying anything. Video games don’t even seem fun to me anymore.”

Video games are Blake’s long held passion. He doesn’t just play them; he dreams of them and plots and plans new ones. Many times I’ve caught him wandering around the family room, seemingly lost in a fog, a smile planted on his face. The smile broadens when he solves a problem in his video game planning process. That he’s saying now that video games don’t seem fun is significant.

“It’s why I haven’t played this game until today. My mind tells me that starting a new game will be too hard. There’s too much of a learning curve. It seems like too much to even try. The thing is, once I start and get into it, it actually starts to get fun and it doesn’t feel that way anymore.”

“Yes, that’s depression, and you’ve described it perfectly,” I tell him. “It colors everything gray. It tells us that things will be too tough, that we shouldn’t even try. And, yet, once we do the hard work of getting going, there’s momentum. You know, you’ve uncovered depression’s secret: if we can find strength to get going, it builds on itself and helps us to recover.”

Blake considers this for a moment, seeming to absorb it. I suggest to him that he may wish to tell his psychiatrist about the way he feels the next time they meet. He’s doing a nice job of communicating it to me; it would probably help his doctor to make decisions with him about his medication if he truly understood how Blake experiences his days. He nods and runs back upstairs to be with his dad and his brother.

Alone in the kitchen now, I am grateful that he is sharing with me. This is a new experience for us, his actually communicating, voluntarily, what he is going through. Perhaps it is another step in the direction of his taking care of his own mental health.

The Food Thief

A sandwich I ate on our drive home. Blake happily ate a similar one, plus many of my French fries.

I pull into the Trader Joe’s parking lot and circle around a time or two. The lot is crowded with folks shopping for their evening meals and the rain is beginning to fall. As we walk through the lot, the water and dark sky mask the red blotches that have bloomed on Blake’s face from the tears he’s cried the entire short distance from his apartment. He feels like a failure – having left home four months ago to begin a new college career in a new city and dropping out after one semester.

“I’m completely unable to function,” Blake has told me on more than one occasion.

What I see differs from what he sees. I see success in having navigated the basics of day to day living. I see a future full of possibility. I see growth and more lessons that still can be mastered. But I also see something that concerns me – something I’m not sure my 19-year-old son is even aware of. I see his weight – or lack of it, that is.

Back at the Apartment

Before we leave Blake’s apartment, he phones his academic advisor.

“Um, hi. This is Blake Roberts. Is there anything else you need from me before I leave?”

As I stand behind him, waiting as he makes his call, my son’s almost-six-foot-tall frame comes into focus. And for a moment, it startles me. He is shockingly thin. His clothing hangs on him, making the weight loss look even more obvious. Did anyone at school notice that the clothes he arrived in at the beginning of the semester had become exceedingly large? He’d lost a good amount of weight before he’d come home for Thanksgiving. Has he lost more? It appears that way.

When Blake finishes his phone call, I focus back on our task of moving out. I file my observation away for later. How would I bring this up in a sensitive way? Would I even bring it up at all?

At the Store

Blake wipes his face and follows me into the grocery store. We’re here for food for the three days ahead of us. Because of food restrictions, eating in most restaurants is not an option for Blake. I want him to choose things he’d like to eat, but he seems uninterested when I point things out.

“Food just doesn’t seem interesting now,” he notes.

I know from experience that trying to force him to make some choices won’t work. Instead, I begin to pick things off the shelf and put them into my cart. I give Blake space and he wanders close by. After a time, something catches his interest. He picks it up, reads the label, and then adds it to the cart. Little by little in this manner our cart fills up. Blake pauses at an item – chocolate mint caramel popcorn (or something like that). He ponders it. I know he’s questioning whether to treat himself (something he rarely does).

“Can you add that to the cart?” I ask.

“Why?”

“It looks interesting. I’d like to try it.”

Blake seems reluctantly happy to comply. He puts it in the cart. We pay. We pack up the car, drive to our hotel for the evening, and unload what we need for the night. Before I’ve even shut the door, Blake has gotten into a bag of food. He eats with abandon. And I silently and gratefully take notice.

Are You Aware…?

Blake continues to eat this way over the next couple of days. He even treats himself to snacks at convenience stores we stop in along the way. Nearing the end of our second driving day, a day in which we’ve marveled at views and checked out historic downtowns, I decide to ask.

“Hey honey? I was wondering – are you aware that you’ve lost quite a bit of weight?”

“Yes,” is the answer.

“Was it intentional?”

“No,” – which is said in a tone that indicates he’s not offended, so I dare to dig slightly deeper.

“Was it because of mood, or was it because of having slept so much and missing meals?” I try to ask gently.

“It was a mix of those. Sometimes I was so depressed food just didn’t sound good. I just didn’t feel like eating. Some days, bed was the only thing that sounded good. It was like a warm hug and I couldn’t think of a reason to leave it – and I slept through mealtimes,” he answers.

“Thank you for sharing with me,” I say tenderly, and we continue on with some other topic.

Silently, though, I’m thinking what a thief and a liar both depression and OCD can be.

“Bed is the best thing in your life. Stay here! Feel safe and comforted. You don’t need to bother with such trivialities as eating. Ah, there. See?”

I imagine Blake sleeping through a day, tricked into believing that bed is best. When he can finally lie there no more and the cobwebs begin to clear, the depression takes the opportunity to dig in more and remind him what a failure he is. It steals his appetite, he mindlessly plays video games to numb the sting of the words his brain tells him about himself, and then it steals the next day of living by convincing him once again that bed is the only place worth being.

For now, Blake seems to be eating with regularity. Occasionally, he forgets a meal. I’m observing and trying to give him room to work this out. One thing I have noticed is that, like me, he seems to derive joy out of feeding others.

“Mom,” he says to me, “may I cook a lasagna for the whole family one night? I’d like to share one with you all.”

“I love that idea,” I say – and I do, much more than he will ever know.