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.”
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.
I was recently reminded that some of the most simple things we say to one another, words that are meant to inspire, connect, or that are simple formalities, can mean something very different to someone struggling with depression or other mental health issues. On a daily basis, there are words that pop out of our mouths out of habit. We usually don’t give them much thought, yet just last week, Blake gave me a window into a different perspective on words that I use.
“There’s something that I’ve been struggling with a lot recently,” Blake says. “People keep asking me how I’m doing.”
“Yes, they do that,” I say.
“Well, the thing is. I’m not sure what to say. I mean, what do you say when the answer to that question, ‘How are you?’ is, ‘I’d rather be dead?’ I don’t think that’s what people want to hear.”
He repeats this quandary to his therapist.
“Yes. It’s one of those formalities,” the therapist says. “I sometimes answer, ‘More or less.’ It confuses them.”
Blake laughs at this response, and then says, “There’s another thing people say. When things go wrong they say, ‘That’s life.’ ” Then he sighs and hangs his head. “That’s life.”
An entire conversation about depression ensued after that, but I took something away from those moments. It made me realize, more than ever, the power of words and how they may be construed by someone who is profoundly depressed. I realized that by saying “That’s life” to someone who is struggling to find even one reason to live, I may be reinforcing that life is nothing more than a series of bad stuff. I may be reinforcing the view of a world the depressed individual already finds so oppressive, so defeating. “That’s life. First it sucks, then it sucks more.”
I also thought about the power of asking, “How are you?” When we ask, do we really want to know? I thought of the depressed individual knowing what the socially appropriate answer is, and recognizing that, by giving it, they are telling a lie. Maybe there’s the feeling of being a misfit in a world where most people seem to be able to answer, “Good,” or “Fine.” Perhaps there’s a desire to say how awful they feel, but not wanting to be rejected for saying so.
I’m not suggesting we stop asking, “How are you?” Nor am I implying that we should drop, “That’s life,” as an expression when we want to explain to someone that the world is not perfect. I’m just taking a step into another frame of reference and, perhaps, taking you there with me for a moment. I just hadn’t ever realized quite the way my profoundly depressed 18-year-old son hears things, and I was given the opportunity to step into his perspective ever-so-briefly.
Of course, for Blake, it doesn’t end there. In his therapy, he is learning how to respond to the “How are you’s.” He is learning that there are some people he can be honest with, and other instances where he might give a social answer. He is also learning to challenge his view of the world. He is learning that “life” is not made all dark by some challenging moments. He is learning that there are shades of gray, and he is even beginning to notice moments of joy. For his father and I, it is a privilege to share in the journey.
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.