Invictus

This morning Blake is up early, even earlier than I am. He is eating breakfast when I come downstairs.

He’s stayed up all night again,” I automatically think. To be perfectly honest, it’s a fair assumption. After all, he didn’t get out of bed until around 9 pm last night. His dad and I went to his room several times during the day encouraging him to get out of bed. It’s a familiar pattern – one that leaves me with a sense of hopelessness that sometimes spreads within me.

“I will,” was all we got – and then he plodded downstairs about an hour before the hubby and I went to sleep.

Blake heads upstairs – to go to bed, I assume – and I offer to make him a cup of coffee. To my surprise, he answers, “Yes.”

When I enter his room he is sitting in front of the space heater. I hand him the warm mug, plant a kiss on his cheek, and shut the door.


“Mom?” I hear from behind the door. I open it back up. “I didn’t stay awake all night. I actually went to bed a little after you and Dad.” He goes on to explain to me how it is possible to go back to sleep after sleeping nearly twenty-four hours.

I’m happy,” he says – words I haven’t heard from him in some time. In fact, I can’t remember when he’s said that. “I got up two days with my alarm this week,” he notes, “and while it might not have been in a row, it’s more than I’ve gotten up on my own in this entire month.”

He goes on to show me words and symbols of motivation he’s written on a white board near his bed. On that board are the letters “INV.” He wants me to see what they stand for and motions me over to his laptop. “Invictus” is a poem written in the 1800’s by William Ernest Henley. For those who do not know the poem or the poet (I didn’t, though perhaps I should have), Henley suffered periods of extreme pain in his early years due to tuberculosis of the bone. He saw one of his legs amputated below the knee due to this. And, yet, his “maimed strength and masterfulness” inspired his friend, Robert Louis Stevenson, to create the character, Long John Silver.

Blake shares the poem with me, noting that he reads it to himself nightly. He identifies with not only the words of the poem, but with Henley, himself. After I read it, I cry and we hug. I am leaving the words to the poem below:

Invictus

by William Ernest Henley

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul.

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The Food Thief

A sandwich I ate on our drive home. Blake happily ate a similar one, plus many of my French fries.

I pull into the Trader Joe’s parking lot and circle around a time or two. The lot is crowded with folks shopping for their evening meals and the rain is beginning to fall. As we walk through the lot, the water and dark sky mask the red blotches that have bloomed on Blake’s face from the tears he’s cried the entire short distance from his apartment. He feels like a failure – having left home four months ago to begin a new college career in a new city and dropping out after one semester.

“I’m completely unable to function,” Blake has told me on more than one occasion.

What I see differs from what he sees. I see success in having navigated the basics of day to day living. I see a future full of possibility. I see growth and more lessons that still can be mastered. But I also see something that concerns me – something I’m not sure my 19-year-old son is even aware of. I see his weight – or lack of it, that is.

Back at the Apartment

Before we leave Blake’s apartment, he phones his academic advisor.

“Um, hi. This is Blake Roberts. Is there anything else you need from me before I leave?”

As I stand behind him, waiting as he makes his call, my son’s almost-six-foot-tall frame comes into focus. And for a moment, it startles me. He is shockingly thin. His clothing hangs on him, making the weight loss look even more obvious. Did anyone at school notice that the clothes he arrived in at the beginning of the semester had become exceedingly large? He’d lost a good amount of weight before he’d come home for Thanksgiving. Has he lost more? It appears that way.

When Blake finishes his phone call, I focus back on our task of moving out. I file my observation away for later. How would I bring this up in a sensitive way? Would I even bring it up at all?

At the Store

Blake wipes his face and follows me into the grocery store. We’re here for food for the three days ahead of us. Because of food restrictions, eating in most restaurants is not an option for Blake. I want him to choose things he’d like to eat, but he seems uninterested when I point things out.

“Food just doesn’t seem interesting now,” he notes.

I know from experience that trying to force him to make some choices won’t work. Instead, I begin to pick things off the shelf and put them into my cart. I give Blake space and he wanders close by. After a time, something catches his interest. He picks it up, reads the label, and then adds it to the cart. Little by little in this manner our cart fills up. Blake pauses at an item – chocolate mint caramel popcorn (or something like that). He ponders it. I know he’s questioning whether to treat himself (something he rarely does).

“Can you add that to the cart?” I ask.

“Why?”

“It looks interesting. I’d like to try it.”

Blake seems reluctantly happy to comply. He puts it in the cart. We pay. We pack up the car, drive to our hotel for the evening, and unload what we need for the night. Before I’ve even shut the door, Blake has gotten into a bag of food. He eats with abandon. And I silently and gratefully take notice.

Are You Aware…?

Blake continues to eat this way over the next couple of days. He even treats himself to snacks at convenience stores we stop in along the way. Nearing the end of our second driving day, a day in which we’ve marveled at views and checked out historic downtowns, I decide to ask.

“Hey honey? I was wondering – are you aware that you’ve lost quite a bit of weight?”

“Yes,” is the answer.

“Was it intentional?”

“No,” – which is said in a tone that indicates he’s not offended, so I dare to dig slightly deeper.

“Was it because of mood, or was it because of having slept so much and missing meals?” I try to ask gently.

“It was a mix of those. Sometimes I was so depressed food just didn’t sound good. I just didn’t feel like eating. Some days, bed was the only thing that sounded good. It was like a warm hug and I couldn’t think of a reason to leave it – and I slept through mealtimes,” he answers.

“Thank you for sharing with me,” I say tenderly, and we continue on with some other topic.

Silently, though, I’m thinking what a thief and a liar both depression and OCD can be.

“Bed is the best thing in your life. Stay here! Feel safe and comforted. You don’t need to bother with such trivialities as eating. Ah, there. See?”

I imagine Blake sleeping through a day, tricked into believing that bed is best. When he can finally lie there no more and the cobwebs begin to clear, the depression takes the opportunity to dig in more and remind him what a failure he is. It steals his appetite, he mindlessly plays video games to numb the sting of the words his brain tells him about himself, and then it steals the next day of living by convincing him once again that bed is the only place worth being.

For now, Blake seems to be eating with regularity. Occasionally, he forgets a meal. I’m observing and trying to give him room to work this out. One thing I have noticed is that, like me, he seems to derive joy out of feeding others.

“Mom,” he says to me, “may I cook a lasagna for the whole family one night? I’d like to share one with you all.”

“I love that idea,” I say – and I do, much more than he will ever know.

The Semester Winds Down

One of the successes: A lasagna Blake made for himself. He likes to photograph his meals.

Blake has been at college for an entire semester – or one week shy of it anyway. It began unceremoniously, with Blake declaring that this would be the shortest college experience of anyone in our family and dreading the start of classes. I flew back home fearful of the unknown and how my youngest might fare.

It’s been a semester of ups and downs. The downs include Blake not making it to class many days, him sleeping way into the evening on days when depression made bed the only option that felt viable, MANY assignments never turned in or even attempted. It included many phone calls from Blake saying he just couldn’t do this, that he needed to drop out. And there were the tears Blake cried over not feeling adequate, losing hope, and no longer knowing what his passion is.

The ups included Blake cooking for himself, grocery shopping, keeping up on haircuts – and being the only one in the apartment to actually clean the bathroom (though that may have been prompted by OCD fears – I digress). They include Blake joining clubs on campus and even attending murder mystery special events (something he rarely did while at home, and then only with much prompting). In short, my 19-year-old moved to a new city, lived in an apartment with three others, shared a room, and took care of the basic things he needed to in order to survive. I’d venture to say that joining clubs is a step beyond the basics.

Still, college itself definitely did not go well. I don’t know how well Blake performed in any class; I don’t know if he even knows. He has decided that this is just not the right time for school for him and he is coming home. He’s not happy about that. In fact, he feels like a failure and fears he’ll only continue to fail and to suffer emotionally. He hates the idea of being an adult in his parents’ home (and cannot seem to recognize that he is certainly not alone in that status).

Late next week, I will fly to meet him. We will pack up his apartment and come home. But we won’t be flying. The hubby and I felt that being back home in a matter of hours was too abrupt a shift from what we think was a growing experience for our boy. So Blake and I will take a road trip home. We have no planned route, no place we must stop – only an ending destination of home in a time span of three days. There will be a lot of open road and empty expanses on our way. My plan is to remind my boy of the successes he had and hope that he can find a way to hold onto those, even for a brief moment.

A New Definition of Success

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

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

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

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

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

BUT…

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

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

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

His Own Initiative

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

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

A Flash of Hope

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

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

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

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

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

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

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

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

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

And Then Another

On Thursday, he did it again.

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

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

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

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

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

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

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

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

A Plan That Lost Steam

Michael, our 21-year-old, is getting ready to leave to study abroad for the remainder of this summer. He sat the hubby and I down the other day and told us he was worried about Blake’s emotional state and his upcoming move out of state to begin college.

“He’s really not ready to go,” Michael observed. “He feels like a disappointment to you guys, especially when it seems that everything is based on whether he gets up in the morning or not. And he doesn’t respond well to tough love. It just makes him shut down more.”

“So what are you thinking?” I asked him, as the three of us sat on our back patio.

“I think he needs a mission, a purpose. You know, little tasks to get him out of the house. Things he needs to practice to live away from home. He can go buy his groceries so you can get an idea now what he’ll need to spend on them and so that he’ll get used to buying what he needs. And he can go to the library or the coffee shop and set up his computer and practice writing from there. You could give him a small stipend each week so he could practice. I think it would make him feel accomplished. But,” Michael continued, “I don’t think it should come from you guys.”

“What do you propose?” asked the hubby.

“I’ll talk with him tonight,” Michael noted. “I’ll see what he thinks and help him to make it his. If it’s his idea, he might be willing.”

So, we parted leaving this between the boys.

Michael Makes Inroads

The next morning, Blake stopped me early.

“Mom,” he said, “Michael and I were talking last night about ways for me to get ready to leave for school. Can we talk with you and Dad tonight about it? I think it’s a good plan.”

“Sure,” I answered. I tried to sound calmly enthusiastic, but inside I was kind of excited. Was my son who regularly chooses bed and the sofa to leaving the home actually wanting to launch a little bit?

The four of us met last night and Michael and Blake led the talk. Michael shared how doing these kinds of things would have helped him make the transition a little easier when he left for college. He thought it would give Blake more confidence to live in the world

And Then I Watched it Happen…

Blake went from mildly enthusiastic to questioning to looking downright terrified. He started finding reasons it wasn’t a good idea. He started worrying he’d be judged and held to this standard. He worried he’d fail. It didn’t matter what anyone said. The hubby and I noted we wouldn’t hold him to anything. It was his plan, and if he followed it, we would cheer him on. If he did not, we wouldn’t comment. Michael stayed positive and light and shared how beneficial it could be. I was proud of how he held his own and supported his brother. In the end, we left it that Blake could decide whether he did it or not.

And then, as I got ready for bed, he called me into his room.

“It’s just so hard to get out of bed,” he said, staring off into space. “Bed is the only place that feels good. It’s like having a hug and having to leave it. Nothing in the day feels good and I just distract myself with YouTube or games all day. And then it’s even hard to go back to bed knowing I’ll have to do the same thing again tomorrow. Living is hard and I’m too scared to die – so I’m just in that in between space.”

And there was little more I knew to do for my son than listen, acknowledge, and snuggle him with a tight squeeze until he dismissed me with a, “Good night, Mom.” For all my professional training and experience, I do not know how to move my own son from here to there. And right now, I don’t know that there is anyone else who knows how to either.

Which Way From Here?

Sometimes treatment moves along at a snail’s pace – or even seems to go backward

When I began writing this blog five years ago, my son, Blake, was 14 years old and had recently refused treatment for his Obsessive-Compulsive Disorder (OCD). He’d had a relapse over the previous school year and, despite access to terrific treatment from specialists in Exposure and Response Prevention (ERP), he ultimately wanted to do it his way.  I started writing as a way to express what was going on in my head, to document what was happening, and to sprinkle in stories of being an OCD specialist while living at home with OCD.

As time passed, my writing shifted. In many recent posts, I’ve focused on the depression that settled in over Blake, causing my hubby and I to make the decision to ask him to defer enrollment in college so that he might take care of himself and gain some skills. We entered therapy as a family. First, Blake refused to participate, and he launched into 18-year-old sized tantrums – turning over the belongings in his room, slamming doors and shutters – each time we introduced a new expectation that was meant to move him toward improved functioning. Finally, he came to treatment as a participant and even started meeting with the therapist without us. I’ve documented his struggles, our struggles, and his progress.

Now, Blake Turns 19…

In about a week, Blake will turn 19-years-old. I haven’t talked much about his OCD lately because we’ve mostly been dealing with depression. Blake’s sleep schedule became greatly dysregulated at the end of tenth grade. He sometimes slept until 10 at night; he was up until 3, 4, or 5 in the morning. Over this past year, he’s been awake all day most days. This has mostly been due to my waking him each morning if he doesn’t get up with his alarm. It’s something we agreed on with his therapist: no sleeping all day in this house; if you don’t get up on your own, we will wake you up. But that last hurdle, getting up on his own and staying awake, has been a challenge. Sometimes he does it. Sometimes he does not. In recent weeks, there’s been a slide backwards. He hasn’t gotten up on his own, and he falls back to sleep all over the house for great chunks of the day.

In our most recent therapy session, I joined Blake and the therapist and we focused on where things are at. Blake was dug deep into his position that “nothing” will work and, yet, he was unwilling to try anything new. Top that off with an essential element: Blake does not really want to accept that anyone else might know better than him and what his head is telling him. His brain tells him he’s a worthless screw-up and that it’ll never get better – and he listens to it. I will vouch that this young man is not worthless in any sense, but many steps forward that he has taken have been with pressure from others. I cannot recall a moment where he has honestly said, “I need help and I’m willing to allow others to walk me through this.”

Pivotal Moments

I watched as Blake’s therapist, a longtime specialist and pioneer in OCD treatment, dug in himself. I could see the struggle in him as he could see the road my son is headed down. He pointed out the direction Blake might be going in his quest to continue to do it Blake’s way.

“Blake, my sister’s mental health issue was destroying her life. We begged her to get treatment, to do it another way. But she continued to choose to do it her way…and it killed her.” I could sense the anguish in the therapist’s voice as he shared his personal story of losing a family member to refusing to get proper help. It’s kind of amazing when you reflect that the professional in front of you is a human being.

He continued, “It’s clear that coming to therapy once a week isn’t getting you to where you’d like to be. It might be time to think of doing something more. It might be time to think about residential treatment for OCD.”

“How would that help?” Blake asked. “They’d just be doing it for me.”

“It would help to have therapists and counselors and staff around 24 hours a day to help you learn to live differently.”

“It wouldn’t work. They’d just be forcing me.”

“You’re right. It wouldn’t work if you went into it with the same attitude you have. It wouldn’t work if you continued to see it as something others were pushing you to do. It might work if you were to recognize that doing it your way isn’t working and if you surrendered yourself to something new. You’d have to see yourself as worth it.”

“I’d feel like a freak,” Blake said quietly. “If I was so desperate as to go live in a hospital, I’d feel like a freak.”

“Blake,” I broke in, “if J were to check into a residential program for what he’s going through, would you think he was a desperate freak, or would you be proud of him for getting the treatment you know he needs?” I asked this in reference to someone close to us Blake worries about.

Without a pause Blake noted that he would be proud – and he made the connections.

“I guess I have some thinking to do,” Blake acknowledged.

An OCD Program?

You may have noticed above that Blake’s therapist did not suggest Blake consider going into a residential program for depression. He suggested a residential program for OCD. He suggested it at least twice (I didn’t include all the dialog). Why an OCD program? We never got to talk about it, but I think I know why. I believe the therapist thinks that much of what is going on with Blake can be traced to his OCD. Blake has an extremely low tolerance for uncertainty or discomfort of any kind. He actually shuts down and becomes unmovable when faced with an anxious moment. He prefers to live in a comfort zone according to rules he has determined are acceptable to live by (but that are actually dictated by OCD). He’s been living a life of religious rules for over six years that has been driven mostly by fear rather than joy and meaning.

Blake has something to think about. How much thinking he is doing, I do not know. I know he got himself out of bed for four days in a row – and he felt proud. And then he sunk into three days running of not getting up on his own and falling asleep for large chunks of time. He is mere weeks from leaving our home to finally beginning college in another state and living in an apartment with three roommates he will not know. If he elects to go to a residential treatment program, what would become of that?  For now, I don’t know. I don’t know what happens if he goes to college, can’t get out of bed to go to school, and returns home. I don’t know what happens if he falls backward enough not to be able to leave home. Like all things that are in the future, I am waiting to see. I’m hoping for the best, but not deceiving myself in acknowledging that this just might not go well.