Austin, Texas. I’m writing tonight from Austin and the 26th Annual OCD Conference. And, Blake is here! The guy who wants nothing to do with anything OCD is here of his own free will. How’d that happen?
Truthfully, it was a strange turn of events. Michael was on a month long trip around the country with a friend from college. He was supposed to meet me in Austin and join me at the conference. Late the night before I was going to leave, his friend abruptly needed to cut the trip short for himself, leaving Michael stranded without a plan in the southeast. The hubby and I hurriedly helped him to identify a flight to get to the conference (he has some commitments here). I assumed he would fly back home with me, but the hubby had other ideas.
“What do you think about Blake joining you for the last two weeks of your trip?” he’d asked Michael.
“I’d love that!” was Michael’s reply.
Blake, surprisingly, was eager to join his brother. He even opted to come out earlier than necessary to see his brother present at the conference. Now, I must admit, I had ideas of grandeur that he’d attend all sorts of events here and enjoy the conference. I was wrong. I think attending Michael’s presentation filled his quota of OCD-themed material. So, he’s enjoying just hanging out, but, hey, he’s here! And he’s going on a spur of the moment trip to who-knows-where with his big brother.
Not bad for a young man who, six months ago, frequently slept til 10 pm and almost never left the house. I’m content.
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.
My heart aches a bit as my eldest son and I sip, slurp, and empty spoonfuls of chocolate mint cookie milkshakes into our mouths at the diner counter. I’ve spent the last three days eating “comfort food” and I’ve probably gained the weight to prove it. Michael is looking tired and haggard, having been given permission to take a break from his exhausting training schedule to say goodbye to mom.
“I’d never hear the end of it from my mom if I didn’t let a young man take time to say goodbye to his mother,” the Director told him earlier that day.
So we sit at this counter, talking about how training is going for the school-year-long volunteer position he will be holding in the first year dormitory. Michael is a sophomore and he will be positioned to support incoming freshman as they navigate their new college experience. He was tickled to be back and excited to begin training when we arrived. Glancing at him now, I can see that the light that was in his eyes yesterday has dimmed some. I’m not sure if it’s exhaustion or something else I see.
“I’m having a tough time with some of the communication training. It’s not upsetting to anyone else because they didn’t have the experience growing up that I did,” he tells me.
“Something about growing up in our home?” I ask, wondering what it is we did to put him in this position.
“Yes,” he says. “They’re having us do exercises on how to say things to people. It’s upsetting to me because of all the times I had to be careful of what I said at home because I didn’t want to upset Blake. It feels like walking on eggshells.”
“You mean, it’s triggering those feelings from when you were worried you’d say something that would set him off?”
“I guess this is one of those lingering effects of growing up with a brother or sister with OCD.”
“I’m tired of being careful of how I say things. I did that for too long.”
I don’t know what else to do, but listen to him as he shares, and to let him know that I believe in him. I recognize that part of this is fueled by exhaustion and the intensity of his training. Yet, I also recognize that OCD can significantly affect more than just the sufferer. Siblings are not frequently mentioned at conferences and in studies on the matter, though they are among those most impacted.
I’ve run support groups for siblings who’ve shared how they’ve been the target of their siblings’ OCD, leaving them feeling perplexed, angered, or downtrodden. I’ve watched siblings being chased by their screaming brother or sister who has OCD, as the sibling with OCD seeks to beat away the OCD demon. I’ve watched as Blake cringed when Michael came near, believing that Michael was contaminated, and I’ve seen Michael finally losing his cool, screaming at his brother, hating the OCD.
Sometimes I think we are past those childhood times. I think that Blake and Michael have both matured enough to know how to deal with things better. Tonight reminds me that, while things may improve, the scars are still there. Sometimes, they still flare up and hurt. Knowing that I will be over 2,200 miles away from him, I remind Michael that the school’s counseling services are there if he needs them. He doesn’t want to hear this. Maybe it was unnecessary for me to suggest it. Still, it is a reminder that siblings of those with OCD bear parts of the disorder, too, and they often need just as much support and understanding.
One year ago, Michael, my oldest, finished his college applications. His central application essay was about his experience living with a family member with OCD. It offered a glimpse, not always very pretty, of our family life and dynamics, and about watching his brother – his beloved friend – slip beyond his grasp. Today, Michael is home from college, and he gave me permission to share his words:
“Why won’t you just eat the food?! We bought this chicken especially for you! It’s much more expensive than the regular ones at the store you said you won’t eat!”
Although my mom buys special food for the house, my brother refuses to believe that it is up to his standards. I feel a need to slip out of the room silently. Sometimes I do leave, sometimes, I do not. It doesn’t really matter whether I do or don’t, because the battle follows me, as my mother continues to yell at the top of her lungs, frustrated and hurt to no end that her own child refuses to eat the food she prepared with the hope that tonight he will accept her efforts and eat, without comment. But the food is never right; it is not acceptable enough, it is not clean enough, and it will never be.
The unspoken hope we all share is a faint little flicker: maybe this night will be different. Maybe we can make it through a dinner as a family, and remain intact. At every family meal, an unwelcome guest pokes his head in and disrupts our otherwise normal lives. My fifteen-year-old brother, Blake, has been plagued with terrible, paralyzing Obsessive-Compulsive Disorder (OCD) for as long as I can remember. He calls his OCD “the Kraken” in order to separate it from himself. I call it the uninvited guest that just will not leave.
Not only does this guest break our bread, he breaks our hearts. Although my mom, a PhD anxiety disorder specialist, has educated my dad and me on his disorder, the whole family is still powerless to do anything but watch as my lifelong friend slips farther and farther away, as his stubbornness stops him from getting help. What is written on paper about it is so vastly different from our actual experience with the disorder. I am left with so many questions. Why is my insight so limited, so human that I am able to do nothing to help my brother? Why can’t Blake show the unwanted guest to the door and be the fun-loving, carefree person he is when he is at his best? He is naturally imaginative and whimsical, a perfect improvisation partner, and an excellent Minecrafter. Like the fingertips of Adam and God on the roof of the Sistine Chapel, I see the paradise that could be, were we only to reach a little bit farther, were one more thing how it ought to be. If only I had the power to reach further.
“You still need to write about it.” The college counselor looks pointedly at Michael. She’s not going to back down on this.
Michael is deep into the process of applying to college. He’s been writing essays for months, digging deep into his skills and experience as he seeks to share who he is with the colleges he is interested in attending. This whole time the proverbial elephant has been present. Michael does not want to talk about his brother. There are so many other things that he would rather write about. Why won’t she just drop the subject?
Now the counselor is looking at me. Her eyes tell me it’s time for me to leave the room. Michael’s head is down. I know he doesn’t want to hurt me with what he’s thinking. I take the cue and excuse myself.
“I’m going to go outside and do some work.”
About ten minutes later, the college counselor sits down in the chair near mine at the patio table.
“I’m giving him space,” she tells me. “He’s really gotten down to writing and I can see that he’s getting emotional.”
We chat for a while and then she goes back inside. Michael emerges a few minutes later. His eyes are red. I put my arm around him and we get in the car to head home.
“I really needed to do that he tells me. I really needed to write about what it’s like to live with a brother who has OCD. I didn’t know that I needed to write it. I’m so glad she pushed me to do it.”
And then he cries for the rest of the half hour drive home. In between the tears he tells me that he’s been holding his emotions back so much. He feels cleaner now; more refreshed. He is glad for this rush of emotion.
As the weeks roll by, he and his counselor choose the essay entitled, “Brother” as the main essay for most of his college applications. Finally, Michael allows my hubby and I to read it. It is a poignant portrait of our family life – one that is painful for me to read in its honesty, and yet healing just the same.
Michael feels a sense of satisfaction in telling his story. Putting it down into words has helped him immensely. His relationship with Blake has improved tremendously in the weeks since his first draft. The anger that I often felt hanging in the air whenever both Blake and Michael were in the room together has mostly subsided. Michael treats his brother with more kindness and understanding.
I asked the counselor about her insistence that Michael write about his experience. She told me that she knew he had a story to tell, just as many of her students with siblings with mental health challenges have a story to tell. It is almost a rite of passage she tells me, a moment in which they grow up just a bit as they put their experience into perspective.
Blake hasn’t seen the essay yet. He only vaguely is aware that one exists. Michael is saving it to share with him someday when he feels the time is right. He is waiting for a day when he believes Blake will not be hurt by it, but will be able to see it as a way for them to share and connect. Something tells me that time will not be too far off.
Blake is still away at camp. He hasn’t written and I haven’t gotten any concerned calls from the camp staff, so I’m guessing that no news is good news. Re-entry will occur later this week. I’m excited for him to come home, yet, cautiously so.
This has been a peaceful time in our home. Eerily peaceful, if you ask me. I think it has been really good for all of us, though, especially for Michael. Siblings are OCD’s often overlooked victims. They are witness to, and often participant in, the tumult. Often, they stand helplessly by as their siblings struggle through painful rituals. They get dragged along to therapy appointments. They see activities missed. They experience the conflict. They can be targets of their sibling’s compulsions or the object of their obsessions. They watch Mom and Dad in angst and sometimes they feel completely overlooked.
Michael is no different. He has shared his anger with his dad and I for turning our attention away from him and to Blake. He has critiqued our ways of intervening. He has shared his feelings of helplessness and he has longed for normalcy. What he has shared with me has been the impetus for talks I’ve given at conferences and for support groups I have run.
Michael has been going through this OCD experience since he was in fourth grade. He is now a senior in high school who is preparing to apply for college. Recently he told me that he is looking forward to leaving home and getting away from the conflict he sees and the insanity that OCD looks like to him.
“Is that bad?” he asked me. “Is it bad that I can’t wait to get away?”
I don’t know exactly what to tell him. I don’t think that it is bad. I think that it is understandable. I wish that he didn’t have to watch his brother’s fruitless rituals. I wish he didn’t have to go through the craziness that we experienced in the past, or the struggles that we face with Blake being a teen now. I can’t take that away, though. It is what it is, and we always try to do better, to improve our interactions. We, however, are a work in progress.
We have tried to keep a balance in supporting both of our boys. Michael actually chooses to be in therapy and I know that it has been a great support to him. In the end, he and Blake actually love each other very much. They are even good friends a great deal of the time (though I know that Michael feels that OCD has robbed him of parts of his best friend in the world). Michael has also taken something very special from the experience of having a brother with OCD: he has become an incredibly supportive advocate for kids with mental health issues. He can sense them in a social group and he is always ready to lend a hand to help those kids. If there’s anything to be gained from the experience, his incredible sensitivity and generosity are just that. And I love the young man he is turning out to be.
Blake, Michael and I are sitting at the dinner table. Blake is fishing in his minestrone soup, a dish I prepare that had still been in his “safe” zone. Although I stopped preparing meals for Blake a little while back, he is still welcome to help himself to something I have prepared if there is enough.
Blake loves my minestrone soup, but tonight, something is wrong. His body stiffens as it usually does when he realizes there’s a rule “violation” – a moment of panic. I’ve added something different to the soup this time. That’s not unusual; it’s a very versatile recipe and Blake has always rolled with the variations. Sometimes I add some spinach. Sometimes a bunch of chard. Tonight, some broccoli seemed in order. Broccoli, however, apparently is in the “No Zone.”
Michael is watching Blake attempt to salvage his soup. Blake picks bits of broccoli out of the soup, placing them on the napkin next to his bowl. He is clearly not happy, but not yet ready to abandon one of his favorite dishes. I’m churning inside, but I try to focus on my own meal and say nothing. Michael is getting angry and he cannot keep it under wraps.
“What’s the problem with the broccoli. Explain this to me.”
“There’s just a problem with it, okay?”
“No. It’s not okay. Why do you have to listen to your OCD? Why can’t you not waste food? Can’t you break the rules for once?”
“It’s NOT about OCD.”
“Yes, it is! Can’t you just admit that for once?”
“Hey, guys,” I break in, “can we not do this at dinner?”
“If we don’t do this now, then when CAN we do it?” Michael asks. “I want to talk about this now. This is my dinner, too.”
I pick up my bowl and my placemat and I walk into the dining room. I’m frustrated, too, and I hurt inside because I am once again reminded that I cannot feed my son. I am incapable of even providing his basic daily sustenance. I don’t want a dinner that’s full of arguing. I don’t want to sit through yet another meal that is full of fighting and anger. If Michael is going to insist on this battle, I don’t want to be a part of it.
I can hear them continuing to argue. Blake defends his position. Michael tells him why he is wrong. Finally, I hear one of the boys get up. I hear the door to the cabinet where the trash is slam, and then I hear the refrigerator door shutting.
“Are you really going to throw that away?” I hear Michael asking angrily. “Because, if you are, maybe I’d like to eat it?”
And then – silence.
I get back up from the dining room table and make my way back to the kitchen. Michael is still at the table eating. Blake is sitting on the sofa reading a book. He apparently never got a bite of food into his mouth. I sit down and we eat our dinner. The silence envelops us.
A Walk Will Do Us Some Good
After we clean up, I ask Michael to walk the dogs with me. Once we are outside, I acknowledge how strong his feelings are. I understand; I’m full of emotion myself.
“Mom, he wastes perfectly good food. He’s sick. Can’t we put him in a hospital somewhere?”
I hear Michael out. I help him to stay focused on his own feelings instead of having him point the finger at his brother. Finally, I’m able to point out the futility of bombarding his brother at the dinner table.
“But I am so tired of having to sit with him at the table and watch him refuse to eat the food – or pick at it like there’s something wrong with it. I’m tired of having my dinner ruined by his OCD!”
“So, is attacking him making your dinner any better?” I ask.
“No,” he admits, sounding defeated. “I know I’m over the top. But I want to yell. I want to get it out. I want him to hear how this makes me feel. I want to be angry. And you won’t engage in it. You leave the table.”
“Michael, you have every right to share how you feel with your brother, but is doing it over your evening meal the best place? I have no problem with you sharing how you are affected. I just don’t want to hear it over dinner. I don’t think it helps. It just puts him on the defensive. Don’t you think it kills me to watch him picking over the food I prepare, or throwing it away? Bringing it up in an accusatory way at that moment accomplishes nothing.”
He Needs to Feel the Consequences
Michael has shared what he needs to. He is silent for a moment, then he looks at me with a determined expression.
“Mom, he needs to feel the consequences of his behavior. I won’t argue anymore. If he has to eat frozen pita and cheese every day for months, then we have to let him do that.”
I agree with Michael. It’s actually what we’ve been talking about needing to happen for a long time, but Michael needed to actually feel this for himself. I let him know that his dad and I welcome him to come to us about this any time he needs to vent. We get it. This OCD behavior affects us all in some way.
It is not easy to be the sibling of someone with OCD. It is painful to watch the futility of rituals performed day after day. It is difficult to see someone you love caught up in something that has no reason to you. It is probably even more difficult when that sibling denies that there is a problem, leaving virtually nothing to work from.
Michael and Blake have an incredible bond and Michael cannot understand why he is unable to break through and get his brother to care enough to get better. He feels his brother slipping away from him sometimes and he tries to pull him back. Sometimes, he feels he’s losing his grip. That’s when the desperation comes out. On this night, though, I believe he realized that, in order to save his brother, he will have to help himself first – as painful as that may be.