We are home from our family vacation. Michael is back at college and Blake, the hubby, and I returned home a little over a week ago. I noted in my previous post that Blake was actually enjoying things we did on vacation. In fact, the rest of us had been tired and had been ready to call off a trip to observe and swim with manatees. Blake told us how it had been a dream of his to participate in this activity. Blake, for whom depression is ever-present, rarely shares that he has any dreams, so we absolutely had to rally and make the adventure happen.
I am happy to follow up and share that the adventure was unbelievable. If you ever have the opportunity to float in the water with these gentle giants, I highly recommend it. We went out in the bay with a well-informed guide and captain. They taught us about manatees and what we could and could not do. After learning that we were not to touch, pursue, or dive after the manatees, we got quietly into the water where several were in the area, and we did a “dead man’s float.”
After a bit of time, a manatee surfaced under my feet and began to swim the length of my body. It was exhilarating, and it took everything in me not to erupt into a fit of giggles. Our little group was very patient and several manatees took interest in us, nuzzling their faces into ours and basically hanging out with us for over an hour. Our captain told us that our experience was not the norm – we had been given a gift.
When the day ended, and we changed back into our clothing, Michael, the hubby, and I thanked Blake for asserting himself. The manatees were a highlight of our time together. Blake agreed. For him, the boy with OCD who used to stay out of the water because it was contaminated, it was a dream come true. In the fog that mental illness has enveloped him in over these last few years, it was one more clear day.
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.
“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
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.”
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.”
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.
This question from Blake’s therapist takes me by surprise and throws me off balance for a moment. Blake has just walked out of the room, shutting the door behind him. Nature calling. I’m just finishing paying for the session, thinking I’m about to walk out the door, too. The therapist isn’t quite done yet.
“What do you think?” he asks, and then he points out, “He’s talking about serious stuff now.”
He’s correct. Blake only started coming to therapy when he wanted to take some control of the interventions his therapist, his dad, and I were implementing. He was angry. He came to bargain. In recent sessions, he’s talked about depression, his dislike for himself – just the mere concept of “Blake,” about his disconnection from the world. Today was no exception and, as has begun to be our routine, I sat like a fly on the wall watching the interaction between Blake and The Doc, wondering what I was doing in there. Although the therapist in me is fascinated by observing what’s going on.
It’s Not About Me, Right?
We’ve been seeing this therapist in hopes that our 18-year-old can overcome his OCD and severe depression and ready himself to live in the world. So I just didn’t expect it when the therapist asked about me.
“I have good days and not so good days,” I answer.
“Well that’s a pretty non-specific answer,” the therapist says with a smile.
“I worry about him,” I say, “but I’m learning patience.”
The truth is, I’m kind of disconnected about how I am. I’ve been so mesmerized by the therapy session, I lost myself a bit. It’s only later in the day, as I ponder the question, “More importantly, how are you doing?” that I think over my frustration at watching my son climb back into bed multiple times each morning. It’s later that I recall the heartbreak at hearing my son talk about how life isn’t worth the good moments when he considers how awful the bad moments are. It’s later that I remember part of me sinking inside as I watch my son wash his hands immediately after handling money or tiptoeing around areas that the dogs might have contaminated.
At the same time, I’m touched by The Doc’s inquiry. As much as my son is suffering, family members are, themselves, affected when their loved one has OCD, depression, or other mental illnesses. If we aren’t directly involved in rituals, or trying to get them out of bed, we are worrying about them. So I’m appreciative of this simple act of kindness and caring. It resonates in me. It reminds me that we family members have to remember to care for ourselves in the face of our loved ones’ struggles. We have to be mindful of our own well-being. If we aren’t, we can become impatient, bitter, angry – basically of little use in this war called mental illness.
So, thank you, kind therapist, for reminding me that I matter, too. It opened something up inside of me and I feel just a little more alive and grounded. I feel less stuck in the mess with my son, and more like myself. And this morning, when I allowed myself to take a long hike in the nearby mountains, I was just a little more open to taking in the scenery and appreciating it, instead of having the specter of depression and OCD hanging over me. Yes, I matter, too.
“I’m just so lonely,” says the young adult in front of me, the despair apparent as the words sit in the air between us.
I’m sitting in the living room of my patient’s family home during one of my recent treatment visits. This past week has been one with slips backward and, to one so new to OCD treatment, they are demoralizing. OCD has taken such a huge toll on this young person’s life that friends and social activities have become a distant memory. OCD demands almost every waking hour and the rituals only end when sleep wins out in its urgency.
I’ve stopped doing exposures at this point in our session – I’m here to do exposure and response prevention (ERP – if you don’t know what this is, you can read about it by clicking HERE) work. My patient wants to do more, wants to move on and get better as fast as possible, but I realize it’s time to step back, time to help paint a clearer picture of what to expect. OCD treatment is not a race to the finish. It is about learning new healthier ways of managing discomfort. In this young person’s case, it is about rebuilding a life worth living – and that takes time and patience.
So, I’ve stopped the session. I’ve changed course. Sometimes OCD recovery is not all about exposures. Sometimes it’s about caring for the whole person and finding something to live for in the moment. Why do the hard work of beating OCD when there’s not something keeping one moving forward right now?
We sit on the sofa. We explore what’s going on. We connect. We realize my patient misses other people, misses being involved with something that is connected to the bigger picture. We brainstorm. We find a regular activity that is doable and that will provide uplifting moments. We look at when the next time there’s an activity available. We arrange for transportation and a companion to go with. For the first time in this hour, my patient smiles.
I get ready to leave and, suddenly, the twenty-something is standing in front of me, apologetic that we didn’t do more exposures today and didn’t get further in treatment. I gently and optimistically adjust that perception. We DID get further in treatment today. We addressed something that needed to be addressed. I encourage my patient to be kind to themself and I note, on the way out the door, that I will look forward to their renewed energy the next time we meet.