The Sibling Effect

IMG_4527My 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?”

“Yes.”

“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.

Brother

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:

Image courtesy SOMMAI at freedigitalphotos.net

Image courtesy SOMMAI at freedigitalphotos.net

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.

Writing the Unwritable

Image courtesy Stuart Miles at freedigitalphotos.net

Image courtesy Stuart Miles at freedigitalphotos.net

“I don’t want to write about it.”

“You need to write about it.”

“It’s not going to be uplifting.”

“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.

My Sibling Has OCD…

Image courtesy sattva at freedigitalphotos.net

Image courtesy sattva at freedigitalphotos.net

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.

“Can’t We Put Him In A Hospital?”

Image courtesy satit_srihin at freedigitalphotos.net

Image courtesy satit_srihin at freedigitalphotos.net

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.

Michael and Mom Go To Therapy

Michael and I are sitting on his therapist’s couch.  We are here because his psychiatrist is concerned about how Michael is being affected by Blake’s OCD (See “The Psychiatrist Weighs In – Part II“).  I am, as well.

Photo Courtesy Michelle Meiklejohn at freedigitalphotos.net

Photo Courtesy Michelle Meiklejohn at freedigitalphotos.net

“Thank you both so much for allowing me to join today,” I begin.  “I asked to be a part of this session because Michael’s psychiatrist was concerned when he saw him.  We’ve had a lot of conflict at home related to Blake’s OCD and I think we can really use a neutral party to help us.”

“I’ve heard some about the conflict,” Dr. H answers.  “What are Dr. X’s concerns?”

“He’s worried about all the attention Blake is getting during our arguments, and the attention that Michael is missing.  What I’d like to accomplish today is to be sure we are doing our best to give Michael the attention he deserves.  I’d also like to figure out how we can approach Blake’s OCD together.  Right now we have a difference of opinion and that’s creating conflict, as well.”

Michael steps in and shares his experiences and viewpoints.  He tells Dr. H how arguments at dinnertime ruin his time with family, how they take away the most special part of the day.  He talks of his frustration at having the table reset or re-organized after he’s already finished it.  And, in a statement that takes me by surprise, he shares his desire to protect me.

He Doesn’t Want to See Me Hurt

“I can see that it hurts Mom and I don’t want to see her hurt,” he tells Dr. H.  “I feel like I have to stand up and do something.”

I love this young man like crazy and my heart swells, but he cannot be responsible for taking care of me.

“Michael, yes, I hurt sometimes, but that’s not your job to take care of.  If I hurt, I can deal with that.  I can handle my own feelings.  I so appreciate your caring about me, but, truly, it’s not your responsibility to take care of me.”

Dr. H agrees and Michael appears ready to relinquish his role as my protector.  We talk about the food rules.  We talk about how each of us contributes to the arguing.   I commit then and there to not pointing out Blake’s OCD behaviors and to staying focused on our time together.  Dr. H reinforces the need for me not to cook for Blake, and she picks up on something in my eyes.

“It really hurts not to be able to feed your child, doesn’t it?”

“Yes,” I agree, as a tear slips down my face.

“Food is a mother’s love,” Dr. H says. I can feel her compassion.

But there’s another matter.  While my husband and I are in agreement that we must not point out Blake’s OCD behaviors to him, or try to strong arm him into breaking his rituals, Michael is just not there.

“I feel like he gets to live in his little OCD world and there’s no consequences of that for him.  Somebody’s got to hold him accountable.  Somebody’s got to let him know how his actions make people feel,” Michael says.  His anger is apparent.  His brother gets to “get away” with having OCD no matter how it affects other people.

“Michael,” Dr. H asks, “how many therapists does it take to change a light bulb?”

“I’ll bet a whole lot.”

“The answer is supposed to be:  One, but the light bulb really has to want to change.”

But He Doesn’t Want to Change

Michael ponders for a moment what Dr. H is trying to say to him.

“But he doesn’t want to change!”

“That’s right.  Right now Blake does not want to change.  What he likes is to argue.  He is very good at getting people to argue with him.  It keeps him from having to really feel the problems connected to his OCD.  He gets a lot of attention for arguing and he doesn’t have to deal with the OCD.”

“He does like to argue,” Michael acknowledges.

“When you argue with him and try to strong arm him, you give him exactly what he wants.  If you don’t fight with him over his rituals and you keep your focus on being with your family, then you make it so that he is alone with his OCD and its effects.  It’s only when he has the chance to really feel those effects that he might decide that he’d like things to change.”

“Okay, I finally understand what my parents have been trying to tell me all along.  Okay, I won’t argue with him.”

“It’s still okay to tell him how you feel when he rearranges something you’ve done or does something that upsets you.  Just wait until a later time, when you’re calm,” Dr. H advises him.  “By the way,” she adds, “I think it’s time to make Blake responsible for all the table setting.  Then he can reset it how he wants without changing what anyone else has done.”

We leave with a plan.  The three of us will stay united in a quest not to argue with Blake.  We will re-claim dinner and other family time for the things we enjoy doing, like talking about each other’s day or discussing world events.  And we will hope that, on his own, Blake will come to see the downside of his OCD rules and rituals and that he will strive to fully be able to join us someday in the not-to-distant future.

This feels good.  This is the first time in a very long time that Michael has been on the same page as my husband and I.  He seems to be willing to let go of some of this responsibility he has felt for ridding Blake of his OCD.  I imagine that, in some way, that must be a relief for him.  Only time will tell.  It is a good place to begin from.

The Psychiatrist Weighs In (Part II)

Image courtesy of  Salvatore Vuono at freedigitalphotos.net

Image courtesy of Salvatore Vuono at freedigitalphotos.net

* Note:  Until now, I have referred to my older son as Big Brother.  I feel he deserves a better name than that; it makes him sound a little too “reality show.”  Since this post deals a lot with him, I am giving him a real name today.  From here forward, he will be “Michael.”

I am sitting in the psychiatrist’s waiting room with Blake, while Michael is in the doctor’s office.  Blake is playing with my smart phone, trying to distract himself after learning that the psychiatrist thinks he still has work to do on his OCD – and that he will not be reducing his medication dosage (See “The Psychiatrist Weighs In“).  The waiting room door opens and Michael steps in.  Dr. X pokes his head out.
“Can I talk with you?” he summons me inside his office.
I was in here less than half an hour ago with Blake.  Now I’m in here alone.
“I had no idea that Blake’s OCD was affecting your family life as much as it is.”
Really?  Really?  How did you not?  You see what he is like.  You’ve heard about his refusal to be in treatment.  I must look incredibly together when I come in here. 
“You didn’t?” I ask.
“Michael told me about the arguments, like about what happened on the way to the cemetery the other day.  And he told me how when he sets the table, Blake resets it.  I’m really concerned.  I’m especially concerned about Michael.”
“What about in particular?”
“When this arguing happens, he sees the attention Blake is getting.  And he feels like the attention goes away from him.”
I Admit That I Bear Some Responsibility
“I know.  I bear part of the responsibility here.  I call attention to something Blake is doing that is OCD.  Or I continue to struggle with him when he’s arguing.  I know I need to stop that,” I admit.
“This whole food thing.  It’s disrupting your whole family dinner time.  What about that?” he asks me.
“I’ve stopped cooking for him.  I haven’t held to it as firmly as I should have, but over the last few days, I’ve been consistent.”
“Can he cook?  What does he eat?”
“He knows how to cook, but, Dr. X, he eats a lot of pita bread and yogurt,” I say forlornly.
“That’s not very nutritious,” he comments.
Yeah, no kidding.  This is why this is so hard.  He doesn’t feed himself well.  But, hey, he often doesn’t eat what I cook either.
“What else can I do?” I ask.  “Even if I buy the food he likes and prepare it, I end up breaking some rule and he won’t eat it anyway.”
“I see what you mean.  You’re right.  You can’t cook for him.  It creates too much tension for the family.”
Have You Tried Family Therapy?
“Have you tried family therapy?” he asks me.
Have we tried family therapy……
“Yes.  We went to family therapy when Blake was in treatment, but he refused to participate in the sessions in a constructive way.  He argued and fought his way through it.  That’s part of why he’s not in treatment right now.  That’s also part of why Michael has his own therapist and why I was in treatment too….we’ve all been in treatment.  This is hard on us all.”
We sit in quiet for a moment.  Then, I have an idea.
“Michael has an appointment with his therapist coming up.  If he is willing, and the therapist agrees maybe I can join in his session.  Perhaps with a neutral person there, he can give voice to how this is affecting him.  And perhaps we can find a way to get on the same team; find an approach that we can agree to.”
“I think that’s a very good idea,” he tells me.  “You know,” he says, “Michael is an exceptional person.  I hope my own kids grow up to have the character he has.  But I think there are things that he is not doing because of what is going on at home. He’s being held back.  And this perception of his losing your attention – this is important to boys.”
“I know, Dr. X,”  I tell him.  “We’ll work on it.”
Can I Join Your Session?
We leave Dr. X’s office and I’ve got a lot on my mind.  How can we help Blake to move forward?  How can we help Michael to not feel so isolated and remind him that he matters too?  When we can catch a moment alone, I pull Michael aside.
“Honey, I’d like to join in your next session with Dr. H.  Would that be okay?”
“Did Dr. X tell you what we talked about?” he asks.
“Yes, and, Michael, you are so very special to Dad and I.  The last thing I want to do is make you feel unimportant or like you are not deserving of attention.  Maybe with Dr. H’s help, we can figure out a way to work together and support each other.”
“That sounds good, Mom.”
“I love you, Michael.  I give him a big squeeze and plant a kiss on his cheek.”
“I love you too, Mom.”
He hugs me back and it is the best feeling in the world right now.