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/

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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.

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.

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.

A New Definition of Success

Blake is in his fifth week of college classes. It’s been a trying time for everyone, not the least for me. I’ve realized over the last month that I’ve spent a great amount of time over the past fourteen years involved in Blake’s well-being – in helping him to be successful. Whether it was running him to neurologists to answer to his teachers’ concerns that he was having seizures (he wasn’t; he was experiencing intrusive thoughts), meeting with occupational therapists to ensure he could find his way around the school, or teaching school personnel how to manage anxiety, OCD, and depression, much of my time was running interference so that Blake could do his job of being a student.

Listening to my son’s feelings of overwhelm these past several weeks and hearing about the days he has missed school entirely and succumbed to depression has sparked that old impulse in me to jump in, to make it better, to pave the path for success. Yet, at the same time, I am learning a new way to interact with Blake and his schooling. And I am learning to define success in a different way.

In the past, helping Blake to be successful meant teaching others to understand the way he learned, and to recognize when mental health issues were interfering or needed to be attended to. It also meant pushing Blake forward when he didn’t believe in himself and helping him to find the tools he did not know he had. It sometimes meant forcing him to get out of bed and to follow a schedule for the day – or even for the hour.

But Blake is not six-years-old anymore. He’s not even seventeen. He is a young adult man – one who has had help and labels poured on him for most of his life. And those things probably continued to come even when he did not want them. In some ways, sometimes, they likely made him feel like a failure, because he struggled, at times, to even do the basic things people do to get along in this world.

My beautiful nineteen-year-old son is living in an apartment nearly 1,000 miles away with three other young men. He is struggling to get along in school, having chosen a major that, as his adviser has pointed out, plays more to his weaknesses than to his strengths. He struggles to get out of bed some days or to find what motivates him. He has dropped all but two of his classes and is teetering on dropping out of school altogether.

BUT…

He is feeding himself every day and getting to the grocery store weekly. He visits his adviser at school and is working on a plan with the disability office. He figured out how to transfer his prescription from our pharmacy at home to one near his apartment in the new state. He gets out of bed MOST days. He got his hair cut (he doesn’t know I know this) which means he figured out where there was a salon, got a ride over and back, and paid for it all himself. 

My husband and I were worry warts in college. We were scheduled; we were efficient with our time. We were not our sons. They have their own way, and Blake’s way is to pave his own path. It is not the path I would have taken or that his dad or his brother would take, but that does not make it any less valid a path. My son is brave and I believe in him. His road is his own. I am here to assist and support if he needs me, but right now what he needs is for his dad and I to believe in him. 

Blake, Dad and I believe in you and whatever your path may be. Thank you for teaching us that success comes in many different hues. When those big feelings you have seem too overwhelming to manage, we will be here to remind you that feelings pass, and that you have what it takes to hang on through them and then to forge onward.

Off to College

It’s been a month and a half since I last posted. It’s been a busy seven weeks.  There was the annual OCD conference in Washington, DC, and a family vacation – and then there was getting Blake ready for college and moving him in. Yes, you read that right, Blake has gone off to college.

In my last post, I shared how Blake had begun to take steps on his own initiative to leave the house and do activities: a trip to the game store, an outing for coffee. It was surprising to us, and he continued to do it. The hubby, Michael, and I were all proud of him, though we tried not to make a big deal out of it. Making a big deal of things with Blake tends to backfire.

Last week, the hubby and I flew with Blake to the Pacific Northwest and helped him settle into an off campus apartment with three other young men. It was an emotional experience for us all – each for different reasons. For the hubby, it was about watching his youngest leave home; for me, it was a mixture of sadness at seeing Blake leave home, happiness that he loved his newfound independence, and fear that I will receive endless texts about how unhappy my son is or, worse, no texts because he just doesn’t get out of bed and is only awake in the wee hours. Blake felt a calm satisfaction at having his own space and making his own hours with no one looking over his shoulder, yet the specter of school weighed heavy on him as he hung his head sadly and declared, “I’ve never ever liked school. This is going to be the shortest college career in family history.”

The apartment before the young men arrive

Returning home was a strange affair. Our house feels incredibly empty. Blake was ever present on the family room couch. The hubby and I have new routines to establish, as well as the process of getting to know one another again with no offspring in the home.

How things will go for Blake is a big question mark. He’s texted once since we left him three days ago (well, actually twice – the first time being to tell us he got out of bed and went to orientation). He wanted to say “Hi” and tell us that all was well. I’m trying to give him a little space to make his own way. His therapist advised him to be aware that OCD symptoms can creep up on one when going through a new transition; depression symptoms can, as well. Blake prefers not to think about that. My guess is that this has to be exciting and scary at once for him. Let’s see what happens. I’ll keep you posted.

His Own Initiative

Our oldest, Michael, left the country one week ago today with excitement over studying and living in another country and a passion to become more fluent in another language. The hubby cried as he hugged our son goodbye, then cried more as we drove home, and once again as he searched birthday card after birthday card in pursuit of a suitable one for our younger son, Blake’s, nineteenth birthday. The hubby’s tears reflected many things: the sadness at watching Michael leave after several weeks in which they spent many close moments together, the bittersweet realization that we will be empty-nesters in a few short weeks, the juxtaposition of the personalities of our two young men – one who craves new experiences in the world and one for whom his bed and our sofa seem experience enough.

Michael’s parting recommendation to his brother had been that he begin to venture out into the world, that he practice the skills he will need when he moves to college in another state next month. He’d worried lovingly about his brother and whether he’d have the skills to live in his new environment. He’d proposed a plan to his brother in which Blake would go out of the house, perhaps a couple of times each week, so that he might gain experience and confidence, and perhaps a little momentum. Blake initially embraced the idea, but it quickly seemed to fall flat as I wrote about in my previous post (“A Plan That Lost Steam“). Depression and anxiety seemed to win out.

A Flash of Hope

I had resigned myself that Blake was not going to follow the plan he and his brother had plotted out. I expected to see him step back from life even more. The hubby and I were true to what we had promised and did not bring the plan back up. To be honest, I even stepped back on our therapy-planned morning routine of waking Blake up. Sure, I still saw that he got up and out of his room, but with much less rigidity and urgency. I felt deflated and spent time searching my mind as to how I would live as meaningfully as possible regardless of what would come with either of my sons in the months ahead.

Still, there were things to be done before Blake can leave for college. There were apartment supplies to be ordered and bank accounts to be transferred (Blake still only had a custodial account in my name). So, I continued to go through the motions of preparing for the move. On Monday morning, Blake and I prepared to go to the bank to get things in order so that he might obtain the all-important debit card.

“Do you want to go grab a coffee afterward?” I asked him just before we left.

“Oh, I was planning to go there myself as a way to get out today. You know, like we talked about with Michael. Is that okay?”

I was a bit startled, a little excited, but tried not to show it.

“Of course,” I said. “Do you want to take separate cars and meet me at the mall, then? We can walk over to the bank, then grab a coffee, and I then I can leave so you can have your time.”

So, we did. Blake navigated his way to the mall parking lot and we met up and walked to the bank and completed the business of transferring his account into his name. Then we walked back to the coffee shop, where I grabbed an iced coffee and quickly made myself scarce. Blake set up his computer at a table.

“I wish I’d brought a chess board,” he noted. “I’d ask someone here to play with me.”

When I got home, I dashed off an email to the hubby at work: “Thought you’d want to know…

And Then Another

On Thursday, he did it again.

“Mom, since we need to go out on another college planning errand today, can I use it as a way to launch into going out on my own again? It kind of helps ease me into it. I mean, since we are going out already, I can just go off on my own when we’re done. I’d like to go to the board game store.”

“Sure, honey. Let’s meet up at the store. We’ll pick out supplies and then you can head on your way,” I’d suggested.

About a half hour later, Blake showed up to meet me.

“Twenty-five minutes to find my way here!” Blake shook his head.

“Hey, you found it and you did it safely,” I replied.

Then we proceeded to giggle our way through the store, Blake being more frugal than I, me reasoning that the slow cooker he was choosing was going to be too small. As we finished, I bid him fun on his adventure. A couple of hours later, he was back home. He’d completed his mission, and had even observed a group at the store playing a Dungeons and Dragons game.

“I tried to join in,” he said, “but they were already too far in. They have a board game night there every other Thursday.”

Whether Blake will continue his missions out into the world we shall see. This week, my son, the one who prefers his bed and the family room couch, went out twice – for no reason other than to practice doing it. No one cajoled him or made suggestions. He just did it himself. While we cannot show great excitement because we know, from experience, that this will just send him back into hiding, this weekend the hubby and I are doing happy dances when no one is looking.