“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.
I don’t think I’ve heard those words out of Blake in two years. Maybe more. The final year of high school was a struggle to the finish. The summer was a descent into days spent with my newly graduated young adult sleeping all day (sometimes until 10 p.m.) and awake all night. He was angry with us, but couldn’t show it most of the time. We had taken college from him because he hadn’t been ready to leave home and now life seemed useless to him. Days were nothing but drudgery – nothing to look forward to.
Six months ago, Blake, struggling with both Obsessive-Compulsive Disorder and Major Depression, refused to attend therapy. When his father and I went alone and started acting more like parents, setting limits and applying consequences that made little sense to him, it got his attention. He came to therapy grudgingly, but determined to get us off his back, and to take back some control.
Little by little, he started to be awake more of each day – most days (there are still setbacks, for sure). He started to create a schedule for himself. For weeks and weeks he fought the schedule, but then it started to get a little exciting. This past week, he completed a short story and it actually felt good. It’s a horror story and, truth be told, it’s compelling and terrifying (yes, he actually let me and the hubby read it).
Dealing With Depression
When we went to therapy one week ago, Blake shared with our therapist about his depression loop.
“I feel lousy and then I realize that it’s stupid to feel depressed about what I feel depressed about. So, I get upset with myself for being depressed…”
“And then you keep going on a downward spiral,” the therapist noted.
“Yes,” Blake had answered. “I just feel worse and worse.
“This is actually great that you recognize the process,” the therapist told him, “because once you recognize it, you can change it.”
“How?” Blake had actually been intrigued.
“Once you know the pattern, you can catch yourself. You can tell yourself that this is your depression pattern, and then you can remind yourself that you don’t have to make yourself feel worse for what you are depressed about. You can remind yourself that you have depression and that this is what it does, but you don’t have to follow it and make yourself feel worse. You can begin to change direction.”
Blake had considered this. He actually invoked it in the week following that session. And that week, he wrote more than ever.
“It was a little better.”
The words resonate in my brain.
“A little better is a nice place to be,” the therapist acknowledges.
“Yes, I guess it is,” Blake agrees. Then, amazingly, he goes on to actually talk with the therapist for the entire hour. I watch them interact as they discuss plans for the week, specific ways the hubby and I are a pain as parents, and Blake’s love of video games. I am amazed as I watch my son engage.
Spontaneously, Blake and the therapist get up from their chairs and head to the therapist’s computer to watch an animation the therapist wants to show Blake. I stay behind for a minute or two and observe. I feel my eyes burn and well up with tears. I haven’t seen this in so long and it feels so good to see glimmers of happy on Blake’s face. And then I stand up to join them.
It’s a Thursday afternoon and I’m sitting cross-legged on our therapist’s office floor, carefully picking baked barbecue potato chip crumbs out of the tight weave of the carpet. I absentmindedly pop a larger piece into my mouth, savor the spiciness of it, and continue my task. My hubby is sitting on the ground close by, leaning against the wall and sipping iced tea. He chuckles quietly when the potato chip passes my lips.
This somewhat absurd scene began when the hubby showed up a few minutes late to our therapy session. He’d stopped for a bite to eat across the street. He still had his drink and his unopened potato chips in his hands.
“Do you mind if I eat my potato chips in your office?” he asked our therapist.
“Potato chips leave a lot of crumbs,” I say, automatically. Then I add, looking at our therapist, whose exposure antics are well known to me, “But maybe you wouldn’t mind that.”
“Oh, that’s right,” he says. “Potato chips can be very useful. May I borrow your bag?” he asks the hubby. “Sometimes I do this with them,” he says, and he empties the entire bag onto the office floor.
I burst out laughing and I glance at the hubby, wondering how he’s going to handle this. This is the man who admonishes me for some of the things I touch with my own patients who have contamination fears. He reaches for a large chip on the floor and pops it into his mouth. Blake says nothing, though I’m sure he places his face in his palms at one point.
Our therapist asks if we’ve ever sat on the floor at a party or gathering. Of course we have. Then he asks if we’ve ever gotten off the floor and gotten a snack and eaten it without washing out hands first. We both have. Blake is still silent. Our therapist explains that people without OCD contamination fears sit on floor and touch it and then go on to eat a snack with those same hands that touched the floor. He reasons that it’s not much different than eating potato chips off the floor. Then he shifts his attention and moves in to talk with Blake.
As Blake and the therapist talk, the hubby and I each bend over occasionally to pick up a chip and eat it. Soon, it becomes cumbersome and, being somewhat irrelevant to the conversation happening in the room, one at a time, we each move to sit on the floor. We take turns eating chips, as the pile grows smaller and smaller. What first seemed silly becomes a normal process to us, until I am left with tiny crumbs that I pick out of the carpet to throw away. I imagine to myself that this might be what it is like to participate in an exposure for OCD – feeling somewhat silly or hesitant at first, then feeling fairly normal. I also wonder if Blake has taken note that mom and dad were willing to be uncomfortable, even for a little bit. If he is, he isn’t showing it. For the time being, he has bigger issues to attend to.
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!”
“You can never win or lose if you don’t run the race” – Psychedelic Furs
Blake is curled up in a ball in the therapist’s office. His knees are pulled up against his chest and his face is buried in his legs. I’m like a fly on the wall as I lean closer to the hubby and witness the scene between my son and his psychologist. It’s almost like we aren’t there, and I try to remain as unobtrusive as possible.
“This is really uncomfortable for you,” the therapist says.
“I’m always uncomfortable,” Blake answers, his voice muffled and pained from between his legs.
The therapist is working to get Blake to agree to adding some structure to his day, to begin to move back into life. Blake frequently spends his days sleeping, or playing video games. He feels like “a failure,” but he doesn’t act to reverse that. He sinks deeper and deeper into depression.
The therapist moves in close. He is mere inches from Blake. “It gets difficult for you when it’s time to take action.”
“I don’t feel like doing anything will help. I don’t feel like doing anything.”
The therapist pushes on, softly, but not backing down. “You have depression, Blake. And you have OCD, and those two frequently come together. Part of your depression is biological – and the natural course of that is for it to get worse. It will tell you to keep doing nothing and you will feel worse.”
“But I don’t feel better when I do something,” Blake replies.
“Here’s the thing,” the therapist says. “Feelings lie. And there’s a lot of hard work ahead of you. The truth is, the first time you do something, you won’t feel better. Feelings are the last thing to change. You have to change your behavior first.”
On the couch, out of Blake’s view, quiet tears roll down my cheeks. I am touched by the tender interaction between my son and our therapist. The therapist has just shared with Blake the deeply personal story of two family members – one who chose life and one who said they would choose, but ultimately left the world prematurely, a result of never having done so.
The therapist rolls his chair side-by-side with Blake’s. He gestures with a flourish at two pieces of artwork on the wall, one by each of the aforementioned family members. Both pieces of artwork are striking in their own right, yet we know the direction each artist’s life went.
“Which will you choose?” he asks Blake, as they both gaze in the direction of the artwork. “Not choosing is a choice not to act.”
“I should choose this one,” Blake answers.
“There’s this thing about ‘shoulds’,” says the therapist. “They make it sound like someone is shouting at you. ‘You should do this!’ Things sound better when we remove the ‘should.’ ”
“I’ll choose this one,” says Blake.
It remains to be seen whether Blake will choose the tough road of living life. It will mean taking on new tasks each week, following through, refining his approach, and feeling a whole lot of discomfort before his feelings of depression may begin to fade just a bit. For this week, he’s agreed to take on a task. He must schedule in an agreed upon amount of time each day for a task he and the therapist have identified as important to him.
I’m doing my best to back off and allow him to follow through. I want to see him leave our home in a year to pursue his career of interest. I’m terribly afraid he won’t. My mom instincts make me want to check up on him, to nudge, to hold him accountable. But, honestly, those are my feelings, and feelings can lie to us. I must also take the difficult road – the uncomfortable one – and let him try this out on his own and be accountable for what he does or does not do. I must continue to find my new way.