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.

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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.

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.

The Journey Home Begins

Blake was fast asleep when I arrived at his apartment. A roommate answered the door and went to wake him. Blake, now awake, led me to his bedroom where a quick glance revealed that the young man he shared a room with was also fast asleep. Almost two in the afternoon. Seemed about right for college students…

What took me by surprise (though it probably shouldn’t have) was that Blake hadn’t packed up his room at all, except for his clothes, which were all in his duffel bag. I’d asked him to pack up everything he could before I’d arrived and he’d done very little. I was frustrated, but kept that to myself. I recognized that getting upset would most likely only delay completing the task at hand. Instead, I suggested we get to work. Blake suggested he take a shower. Sigh.

“Sure,” I said. “I’ll go make some work phone calls in the car. Come get me when you’re ready to pack.”

Twenty minutes later, Blake was knocking on the car window. He didn’t seem to know where to start. I’m not sure if it was depression, being nineteen, or just plain old lack of experience that paralyzed him. Whatever it was, I began directing.

We folded bedding; we packed kitchen supplies; we sorted through his remaining food. Hygiene items had to be sorted – those worthy of the journey home and those to be relegated to the trash. I directed Blake to suitcases, to giant trash bags I’d brought with me, and to grocery bags. At some point his roommate had gotten out of bed and we had the room to ourselves. I directed swiftly staying focused on the task.

There was a quarter dollar coin on the carpet. Blake walked carelessly back and forth over it.

“Who does this belong to?” I asked.

“It’s been there a long time,” Blake answered, “ probably most of the semester.”

We loaded all his belongings into the car, two floors below. Up and down the stairs, over and over again. Finally, we’d finished and it was time to say goodbye.

“Hey, Josh,” Blake called to his roommate, who was now at the dining table, “Do you know whose quarter is on our floor?”

“Oh yeah. That’s mine. I dropped it a while back.”

Blake handed the quarter to him and then they shook hands.

“I wish you all the best, man,” Blake said as they parted.

“Yeah, you too.”

We climbed into the car.

“Ready to go?” I asked. Blake nodded. As we pulled out of the apartment complex, I saw Blake wipe a tear from his face. Then another. And another. They were flowing freely now.

“You gonna miss it here?”

“It just feels like another failure – another failed opportunity in my life,” he said.

“Hey,” I said, “there were successes here, too. A lot of them. You’re allowed to feel what you feel and I won’t take away from that. You certainly have more growing and learning to do. At the same time, please remember that there were some things you dealt with very well.”

“Thanks, Mom.” My cue to be quiet. And we drove out of the complex I silence. Onward toward the future.

The Semester Winds Down

One of the successes: A lasagna Blake made for himself. He likes to photograph his meals.

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.

Monday Morning

It’s 8:32 in the morning and I send a text message to both of my boys about the Thanksgiving holiday, which is over a month away. I have to make airplane reservations and I want to check on their schedules. I expect I’ll hear from Michael; it’s three hours later where he is and he already had a class this morning. Blake I don’t expect to hear from until at least late afternoon or evening with his sleep issues. He has a 10 am class, but he’s missed attending nearly every week.

To my surprise, it’s Blake I hear back from first at 8:39 am. He confirms his schedule for me. 

Me: Whatcha doing?

Blake: Waking up.

Me: You heading out to class?

Blake: Yeah 

Me: Out of bed yet?

Blake: Showered.

Me: Wow. Just wow.

Blake: I appreciate your amazement at my basic levels of human functioning. 😛

Me: It’s a mom thing.

Blake: Are turnovers a breakfast pastry or dessert?

Me: They are whatever you like them to be. Love you.

Blake: Love you too!

It’s a brief moment in time, but it’s a victory nonetheless. Blake is awake. He got himself showered at a time that allows him to participate in the day. Whether he will leave his apartment and head to school or head back to bed is uncertain. It is just this – a moment.