Glimmers of Hope on Vacation

The OCD in the Family family is on vacation. We are currently in Florida, in a small town on the Atlantic Ocean. The hubby, Michael, and Blake are in their rooms sleeping off the frenzied pace of the last five days. I walk the coast alone in what is unseasonably cold weather, but my heart is warmed by what I’ve experienced in my younger son on this journey.

Michael, our older son, has always enjoyed travel and is up for new adventures constantly. Blake, however, is a different story. He is usually extremely uncomfortable out of his usual environment. For as long as I can remember, he’s felt overwhelmed by new places, sounds, foods, smells, people, and, well – you name it. Compound this with Obsessive-Compulsive Disorder and, in the last two plus years, major depression, and you have a recipe for a very challenging family vacation experience.  We’ve gone on many a vacation where Blake stayed behind in the hotel room or the car, or only went out with us after substantial begging (usually pleading to go back to the car to wait as soon as we’d allow it).

This Time, It’s Different

This vacation, however, has been different. Blake wasn’t particularly interested in going on this vacation. As usual, he came along because we were going. Then something started to happen that none of us could have predicted; he started to enjoy himself.

I first noticed it when we were at Epcot. If you’ve never been to this Walt Disney World park (as we never had before), it consists of a Future World (East and West) and a World Showcase, which features different countries around the world in street scenes, attractions, and food offerings. After a long, cold day in the park, I began to walk more quickly through some sections of countries in the World Showcase. Blake slowed me down, though.

“I don’t know if I’ll ever make it to all these countries,” Blake said. “I want to see everything I can while we are here.” Then he proceeded to walk down every corridor and alleyway he could find.

The next thing I noticed was that Blake picked out a meal for himself at the Kennedy Space Center. Blake, whose OCD often centers around food choices (or, should I say, problems with the food choices around him), at first said he would forgo eating anything at the Center’s cafeterias. He would wait and eat food he was comfortable with back in the car. The next thing I knew, he had a tray filled with food, and even a dessert of astronaut ice cream. He joined us at the cafeteria table and ate, something he hasn’t done in years.

Last night, he had a long discussion with the hubby about all the places in the world he would like to see. What? Blake wants to see the world? He named off basically every country in the world – the more different from our country, the more he seemed interested.

“What about traveling for leisure?” the hubby asked him.

“The thing is, I’m so uncomfortable traveling, I couldn’t relax.” Blake answered, “I may as well go somewhere I can see things and learn about different cultures.”

Manatees in the Morning

This morning, as Michael, the hubby, and I ate breakfast (Blake was sleeping in), we decided to call off our manatee excursion for the next day. It was too far away, we’d have to leave too early, and it was just too cold for swimming in rivers. Plus, we’d been moving at breakneck speed for several days. It would be nice to have one more leisurely day.

We took it as a given that Blake wouldn’t mind the cancellation. So the hubby went off to call the tour company and I took a breakfast tray in to Blake.

“Dad’s cancelling the manatee tour and swim for tomorrow,” I told Blake. “That way we can take it a little easier.”

Blake’s face contorted into a pained grimace.

“Are you reacting to the manatees?” I asked.

“Yes!”

“Did you really want to swim with them?”

“More than anything,” he said, “but I can wait…if that’s what everyone else wants.”

“Let me see what I can do,” I said, as I bolted out of the room. It just rarely happens that Blake wants to do anything, and I wanted to reward his speaking up. I caught the hubby on the phone talking to the tour operator. I waved wildly for his attention, then told him what had occurred.

“Well, it looks like we’ll be coming after all,” he told the tour operator.

I went to tell Blake that the manatee adventure was on and the glee in his expression told me I’d done the right thing.

I Don’t Know What’s Going On, But I’ll Take It

Blake, wearing a hat that belonged to his grandfather, contemplates the space shuttle rocket.

I told the hubby how excited Blake was about the manatee tour. He and I marveled over the exciting things happening with our son on this vacation. The young man who normally doesn’t want to leave home, who only wants to read about the world instead of live in it, and who regularly says he dislikes himself and much of the world has had a few positive days where he seems to actually want to be here and to experience life.

Afterward, Blake and I perused the library at our lodging. He marveled over the books and wished he had more days here to sit and read. He supposed one thousand hours might do. As we passed through the hubby’s and my room, Blake shared his sentiments with his dad.

“You know, Dad, I’ve changed my mind about leisure vacations. Sometimes it would just be nice to sit and read a good book on vacation for hours on end.”

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Blake Decides to Increase His Medication

Image courtesy of Sira Anamwong at FreeDigitalPhotos.net

The big news this week is that Blake has decided to increase his SSRI (selective serotonin reuptake inhibitor) dosage. Seriously, it’s BIG news. I know. I know. For many on these medications, which tend to be the first line of defense in terms of medication for Obsessive-Compulsive Disorder (OCD), this is just a normal occurrence. Sometimes you go up in dosage. Some times you go down. That’s not the case for Blake.

Blake has been on the same dose of his SSRI since he was thirteen years old (13). He’s eighteen(18) now, in case you don’t know. That’s five years on the same dose. That’s more than two years of feeling he’d be better off dead. More than two years of people begging him to increase his dosage. His psychiatrist has begged, his pediatrician has begged him, his father and I have begged him. His therapist has encouraged him and challenged his reasoning on why he won’t increase his dosage.

“I don’t like being on medication,” says Blake. “It doesn’t help me.”

“How do you know it doesn’t help?” asks the therapist. “Maybe you’re not on a therapeutic dosage for you.”

“It doesn’t help. I don’t want to change it. It won’t help me.”

“How do you know if you haven’t tried?”

“I just don’t want to.”

Last week, the conversation came up again.

“Okay, I’ll give it a try,” he says, with little fanfare or need for cajoling.

He goes home and calls his psychiatrist and has begun a higher dose. I don’t know if it will make a difference at all in his major depression or in his OCD, but it is a big move for Blake to even try. So far, he is tolerating the increase well; however it has only been two days.

In other news, his therapist asked him this week how his week was. He’d been wondering how depressed Blake had felt in the past week.

“It’s been a good week,” remarks Blake. I haven’t heard him say that in – well, I can’t recall how long.

“So, it was a good week not to get hit by a bus?” asks his therapist.

“It was definitely a good week not to get hit by a bus.”

And Blake smiles.

 

I Just Wash More Than Other People

We pull into the parking lot and get out of the car. I notice that I’ve parked kind of crooked, so I climb back in, start the car up again, and straighten it out. Blake raises a hand to signal that I’m okay now. I notice the glove. It’s stretched out and missing the tip of the thumb where Blake has pulled a thread and the glove has begun to unravel.

As I climb out of the car and we make our way to the therapist’s office, I notice that both gloves are misshapen. The wrists sit limply against Blake’s skin, like they’ve been tugged at too many times and any elasticity is long gone.  Blake is dressed in a short sleeve t-shirt and cold weather gloves. I think he stands out in this appearance, particularly with his thumb halfway protruding from the shredded threads. I don’t say anything. I know better.

I gave these gloves to Blake a few winters ago. His hands get especially chapped and painful for a few months each year. He slathers them in petroleum jelly at night and pulls the gloves on to keep the goop from getting all over everything else. Today he’s wearing them out of the house; his hands must feel extra painful if he’s wearing the gloves during the daytime.

I Just Wash More Than Other People

As we sit in the therapist’s waiting room, I am certain that The Doc is going to comment on the gloves. Anyone who has ever dealt with OCD treatment knows that embracing uncertainty is paramount, but there are few things I can feel more confidently certain about than the therapist honing in on these gloves. In a few moments, my prediction is confirmed. The Doc steps out into the waiting room and, almost immediately notices Blake’s gloved hands. He steps closer to Blake.

“What’s this?” he asks.

“Oh,” says Blake casually, “my hands get really chapped and sore this time of year.”

“Why is that?” the therapist wonders.

“I don’t know. It’s just the weather.”

“My hands don’t do that.” He holds out his own hands.

Blake removes his gloves and displays them for us. They are red and raw. It’s obvious they are painful.

“Have you been washing a lot?”

“My hands have always gotten like this in the winter.”

“How long has that been going on?” asks The Doc.

“Always,” says Blake.

Indeed, I don’t think Blake can remember a winter where his hands weren’t painful, raw, or bleeding. His hand washing at age six was my first big sign that he had OCD. It was something I’d hoped would go away. Despite education and treatment, it is still here, twelve years later. Blake knows nothing but painful winter hands.

“Maybe you’re washing too much,” suggests the therapist.

“It’s not that,” Blake says. “I just wash more than other people, that’s all, but that’s not why. The weather just does this to my hands.”

“You know,” suggests the therapist, thoughtfully, “you could try an experiment. You could decrease or stop washing and see what happens. Then you’d know if it’s the weather or the washing.”

“I don’t want to. That’s disgusting.”

To Purchase New Gloves or Not

After therapy, as we drive home, I note to Blake that his gloves have seen better days. It’s time to toss this pair out.

“But they’re the only pair I have,” he laments. “Do they really look that bad?”

“Yes, they do.”

Blake reluctantly tosses his gloves in a trash can later that day and sadly wonders what he will do to protect his hands. I ponder whether I should buy him a new pair. My inclination is to purchase them (mind you, we live somewhere where the daytime weather rarely gets below the 50’s Fahrenheit), but I wonder whether I’m accommodating his hand washing behavior if I do. He hasn’t asked for new gloves, nor has he said anything about going to purchase them himself. For now, I’m waiting.

I Don’t Want To, But I Have To

“I really don’t want to be here, but I have to…”

It’s another Thursday afternoon and, as usual, Blake, the hubby, and I are sitting in our therapist’s office. In what’s become a more and more commonplace occurrence, the hubby and I are sitting quietly on the sofa. Blake is in a chair hunched over his knees. The therapist is sitting close to Blake and is locked in conversation with him.

I’m not sure why the hubby and I are in the room sometimes, lately, but Blake wants us in there. The hubby allows his eyes to close; I think that’s how he focuses on the intimate conversation taking place to our left.

The topic, as it has been lately, is depression. Blake is describing the all-too-familiar pattern of following his depressed, dark thoughts down an endless rabbit hole of despair. Our therapist is gently directing Blake toward possibly confronting this pattern. Blake shares his perception of life holding no positive meaning. Suddenly, he seems a little breathless.

“This is really uncomfortable to talk about,” he notes. “I really don’t want to talk about it, but I have to.”

I watch him gather himself and continue. He pauses again, later – and, again, he comments. “I don’t want to, but I have to.”

I take this as a sign of bravery, a sign that Blake recognizes that, in order to gain the upper hand on his depression and his OCD, he has some very uncomfortable work to do. Later, I ask him about it, and he confirms this interpretation to me. Blake understands that he must share how he thinks, even though it is incredibly uncomfortable, so that he can move forward and begin the process of healing.

Honestly, this is remarkable to witness. We, as a family, have been though years of struggle. We’ve watched Blake succumb to OCD thinking, and then to depression. He has battled facing anything that is even the slightest bit uncomfortable. Yet, now, at age 18, there are glimmers of willingness to do the hard work – to fight for a life worth living. I recognize that there will be more struggles and steps backward, and that this will be a process. Yet, this is new and it is something I don’t think I’ve ever seen in my son before. I am so very proud of him.

Showdown and Shooting

Brand new baby box turtles

I found last week a difficult week to post. Blake and I had some serious run-ins, and our community was greatly affected by the massacre in Las Vegas. My attention was on home and community and I’m just now feeling like I can give a bit of attention to my blog.

On the Homefront

Blake continues to attend therapy, yet he is really not completely on board. I heard last week that the hubby and I “smother” him – his term. It’s probably true.

“You and so many others keep trying to help me. It’s like life rings are getting thrown at me from so many directions. I’m overwhelmed. And I almost feel like drowning just to get you to leave me alone!” he told me one evening.

I told him I appreciated knowing that he feels smothered by us.

“I feel like I’ve never done anything on my own. I wish you guys would throw me out so I’d be on the street and prove that I can make it.”

“I get it that you want to prove that you can make it, Blake. It just makes me wonder, does the only way you’ll be able to take charge of your own life and make of it what you want have to involve living on the street? Or can it happen with a roof over your head and food to eat?”

When our therapist heard Blake’s reasoning for continuing to resist getting better, he commented, “I guess you’ve got a lot of evidence to prove that continuing to drown does not get people to back off.”

Then he kicked the hubby and I out of the therapy office and met with Blake alone – which was actually quite nice, oddly enough.

In the Community

While Blake was begging for us to leave him alone, the community came calling. Thirty-six hours after the Las Vegas shooting, a colleague reached out. At least ten members of our community had been shot. Many more had been at the Route 91 festival.

“Can you let me know of any Las Vegas debriefing sessions in {our community}? I have one client who was there…another coming in. You are so connected. I know you may hear of something.”

Up until that point, I’d felt helpless. As a psychologist, I know the effects of an event such as this, but I didn’t know how I could help. Suddenly, I knew. I contacted our local community mental health center, a place I used to work and serve on the board of directors. I asked whether they would be offering any community support events. Two days later, I found myself on a panel discussing ways to cope, how to help our children, what we might expect in the days and weeks ahead.

The next thing I knew, I was publicizing support events to our local mental health community, listening to survivors’ stories, showing up on the local news, and connecting those with the resources to those who needed it. Someone added me to a Facebook group for survivors and helpers. There are nearly 350 people in that group. How did so many of our community members happen to be at this event? It felt like a mission. I became consumed with helping.

…And then I kind of crashed. I don’t know if it was compassion fatigue, but I needed to disengage for a bit from the tension in the house and the craziness in the world.

New Life

Just when I felt at my lowest, nature sent me a gift. I stepped into our backyard just before a meeting and was greeted by two, silver-dollar sized baby box turtles. For a moment, my heart raced with joy. Three months ago, I watched in amazement as my thirty-something-year-old turtle laid a clutch of eggs and buried them in her enclosure. Now, two hatchlings sat in the yard, covered in dirt – a beautiful reminder of how life renews itself. A chance for me to step back and breathe.

When OCD Seizes Religion

There is a lot written about Obsessive-Compulsive Disorder and religion. Heck, some of the earliest recognized forms of OCD were in religious circles: people who were constantly in confession, people who said prayers over and over until they got them just right.  At conferences and workshops I’ve attended on OCD and religion, the guiding principal has been that one must respect a person’s religious values and practices, while helping them to separate out that part which is OCD. What, however, is to be done when being religious is all about OCD in the first place? Let me explain.

Blake became religious about six years ago. Our family certainly identifies with our religion. We celebrate holidays, we do attend some services, and the hubby and I enjoy learning and studying about our religion. However, there are very few who really know us who would describe us as a devoutly religious family. That’s why it was a surprise to many when our son became very religious.

The hubby and I believed Blake’s fast journey to religious observance was OCD driven, with fear being the motivating factor. Blake contended that was not true; he professed that he was doing this out of desire and wanting to learn  more.  Still, he repeated prayers, he stressed about the way he observed, and he was overly punitive to himself when he made a mistake in observance. We consulted with mental health professionals and religious authorities to help separate out what was OCD and what was true observance. I embarked on learning more about my own religion in order to keep up with what my son was doing. We were welcomed by those who were more religiously observant and who graciously accepted Blake into their midst. It was a fascinating journey.

Still, although Blake found some happiness in being religious, I often observed that it seemed like torture. Instead of his finding meaning in his observance, he spent many nights awake, crying in despair because he couldn’t believe enough – couldn’t answer whether the Almighty was actually there, or whether he had completely changed his life in vain. The hubby and I were concerned that Blake’s flight into religion might eventually lead him on a path in the opposite direction.

And then, the confession…

It wasn’t a confession in the sense that people with OCD often confess. I mean, Blake didn’t come to us to clear his conscience or to get reassurance. One tortured night a couple of months ago, as he sat with tears in his eyes, he told us the truth that was in his heart.

“I don’t actually believe,” he told us, and then bravely proceeded to tell his religious mentors, who accepted his comments with various degrees of receptivity. The best response came from the mentor who told him that religion was not supposed to cause him despair and pain, and who reiterated that he will support him no matter what he does.

This week, Blake shared his most insightful revelation yet.

“It’s always been about OCD,” he told us. “It’s what so much of my depression is about. I’ve only practiced because OCD made me afraid not to. I’ve realized over the last several days that I’d rather not go on living this way.”

Of course, I immediately became fearful that this meant Blake was suicidal. So, I asked, and he assured me he was not.

“I just think something is wrong when religion makes you want to contemplate suicide,” he told me. “I like to think there is a G-d and that’s not what religion is supposed to do. I’m just not sure what I’m going to do yet. I just know I can’t keep doing what I have been.”

So what does one do when their entire religious practice, or most of it, has been based on OCD saying, ‘You have to, or something bad might happen?’ How does one proceed? Does one give it all up? Does one change things in increments? Blake is terrified to make any changes at all, and it’s because of that old familiar OCD anxiety. He’s terrified to feel the discomfort that comes from defying one’s OCD – and he’s stuck in this in between place.

“I feel like I went searching for G-d. I knocked on the door to his house, but he wasn’t home. Now, I feel like giving up. He knows where I am and he can come find me,” Blake told us, thinking out loud.

“Maybe you went looking in the wrong places or under the wrong pretense,” I suggested. “I can imagine that G-d wouldn’t have wanted you coming out of fear only. Perhaps it’s time for you to approach things in a new way. Maybe it’s time for you to stand up to your OCD and your fear. Maybe your job is to do the things that make you feel scared and anxious.”

“But it’s too scary,” Blake said. “I’m so nervous.”

“You’ve stood up to OCD fears before, Blake. I know you will again when you are ready.”

So my son sits, for now, in his in between space. He recognizes his OCD, knows he must do something different, but is still too afraid to act. The hubby and I support wherever he must be in this process. I can only imagine the difficulty of being where he is, emotionally. And I can only hope that he finds the courage to move forward soon.

Grown, But Not Flown

Image courtesy of imagerymajestic at FreeDigitalPhotos.net

My Facebook feed is full of them – images of smiling young adults ready to begin their new adventures and dorm rooms decorated with more style than I’ve ever been capable of mustering, first day photos of fresh faces off to their first day of community college, declarations of pride from parents for all that their child has accomplished and has yet to accomplish ahead of them, and the teary-eyed laments of friends who are saying farewell (for a little while) to their progeny. There’s also the sharing of articles about navigating these new milestones in a family’s life, the most frequent of which I see coming from a website called Grown and Flown. Since it kept showing up in my feed, I perused said website and it is chock full of useful articles (e.g, dorm room shopping, college care package ideas, dealing with the empty nest, community college, helping special needs students adjust to college, etc.), but doing so left me feeling all the more alone.

What’s missing from all of these posts and article shares is the situation my husband and I are facing right now, the one where the young adult is not going to college/university, community college, taking a gap year to volunteer or study or travel, or obtaining/seeking employment. As I peruse my feed I wonder where the posts are that read,”I love Jake so much and he’s staying home in bed this year because he’s too depressed to get out! No job or classes for this young man. It’s gonna be a mental health year!” It could even have a photo of Jake asleep in his bed at 4 o’clock in the afternoon. Where are the website articles entitled, “When Mental Illness Prevents Your College Age Child From Doing Anything That Resembles Productivity?” I may not have dug deep enough into the websites my friends are posting from, but I could not find articles there for parents living with young adults who might otherwise be launching into some new phase, but, instead, are struggling with debilitating mental illness.

Don’t get me wrong. I do not begrudge my friends their joy, or even their bittersweet reflections, as their children begin their new journeys. I feel for the many emotions they are experiencing. Two years ago, we took our oldest son across the country, moved him into a tiny two person room, and dealt with pangs of loneliness mixed with overflowing pride. At the same time, I feel deep sadness at our own situation with our youngest son, and I’m not really sure how to talk about it with others as I watch the images and articles of what might have been scroll by.

When Things Don’t Go According to Plan

I never imagined that I would have a child who would finish high school and not be ready to attend college or begin a job. I do not think parents imagine that their child will develop a severe mental illness and not be able to do what his or her peers are doing. My guess is that most have big hopes and plan in that direction – my husband and I certainly did. With one child, that’s the way it went. With our second, it has been different.

Our younger son, Blake, has had his share of struggles. He was diagnosed with Obsessive-Compulsive Disorder (OCD) at age seven. He went through effective treatment, and has had periods where he has done very well. As a teenager, he had a relapse, and it was difficult to engage him in treatment, despite much begging and pleading on my husband’s and my part. When depression began to settle in on top of his OCD, his basic functioning suffered tremendously. He withdrew more and more from the world and lost joy for most activities. His sleep wake schedule became reversed, and the future felt dismal.

My husband and I propped Blake up. We supported him in school; we practically pushed him through his senior year. And we kept hoping for the best. It was exciting when Blake was accepted to the school of his choice, one that would lead him on a career path he had been talking about since he was seven. Yet, as senior year drew closer to the end, we had to face a painful truth. Blake was not getting better; he was getting worse. Sending him to another state to live in an apartment and enrolling him in a grueling program would spell disaster.

With guidance from our family therapist, we told Blake that we would not be sending him to school this academic year. We asked him to defer his enrollment for one year (something his school is very supportive of) so that he could focus on getting emotionally healthy. Blake was not a fan of our decision, to say the least, and, initially, he shut down even more. However, my husband and I feel secure that we made the decision that was best for our son and our family. Ultimately, our hope is that, with time and treatment, our son will be much better equipped to head out into the world.

It’s an awkward road, though. Frequently, people come up to us asking what Blake is up to this year. When I say that he is taking the year off, that answer is inevitably followed by the question, “Oh, so what is he doing with his time off?” Initially, I felt the need to fully explain the situation to people, but that was awkward for us both. Now I simply say that he is taking the year to fully prepare himself for what’s next. It works.

It’s also an incredibly isolating experience. Back to the Facebook feed. While I am watching and celebrating other young adults I know headed on to something new, I feel alone in having a son struggling so greatly. Oh, there are parents who connect to each other. We do so at conferences, in online support groups (and some in person), and through specialized groups on social media. We see our lives mirrored in articles we find on mental health websites and blogs. Rarely do we see what we are going through running through our social media feeds, or in articles that are widely shared in the mainstream.  Sometimes I feel marginalized or irrelevant and wish that mental health issues, such as the ones we are facing, were just out there in full view and with widespread discussion.

What If Someone Wrote That Article?

If I were to write an article that were to reach out not just to parents of young adults struggling with mental illness, but to all parents of young adults, I would make it infinitely clear that there is no stigma in facing mental health challenges any more than there is in facing physical health challenges. I would note that, just as some young people become physically ill and must delay plans to take time to recover, so do some become mentally ill. I would point out that, by taking the time to get treatment now, a young person increases their likelihood of success in their chosen path. And I would be emphatic that we ought to celebrate the young adult who is working on their mental health, just as we celebrate the one who is moving into that dormitory this week.

Maybe, with that kind of widespread awareness, I would start to see something new in my social media feed. It might read something like this:

“It is with great pride and joy that I share that my young adult is taking this year to really take care of themself. It’s been a tough road, and the struggle has been real, but this is one brave kiddo who has the courage to get help and to heal. I love you, my child!”

Now, that’s one post I could definitely “Love.”