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.

In Which Mom Loses Her Temper

Costa RicaYes, I felt a little inspired by Winnie the Pooh books for this one (remember, In Which Piglet is Entirely Surrounded by Water?”). Maybe it’s my way of getting a little storybook-esque about what happened last night and getting some distance from something I feel horrible for. Whatever it is, we begin with Mom putting the final touches on family dinner. Michael is away and Mom has worked hard on a nice meal in hopes that the family that is here (Dad, Blake, and herself) can enjoy time together. All are just about ready to sit down together. And then it happens…

Mom makes a mistake. Blake, who constantly looks over Mom’s shoulder when food preparation is involved (food that he is going to eat), points out Mom’s mistake and notes that he will now be unable to eat said food. Mom, who usually does not cook for Blake for just this reason, tries to keep it together. Maybe it was a real error; maybe it is an error only according to that interloper, OCD. It does not matter. Either way, Mom feels her heart sink. The hard work will not be appreciated by all. There is a breach in the dream for the evening. The evening feels ruined to her.

Hard as she tries, she cannot contain her disappointment. Hurt and angry words escape from her mouth, and then she escapes from the situation. She leaves the house. She walks around the block, fuming as she goes. There is so much pressure in having someone look over her shoulder. Yet, he is her son, who she loves. How can one mistake devastate an entire evening? How could she have become so foolish that she got back into the trap of believing she could do things without there being a catch? How can she be so black and white? She is angry with the situation. She is angry with herself.

She returns half an hour later still hurt, hunger gone. She walks the dogs and skips dinner. Blake walks downstairs crying his eyes out, telling Dad that he hates hurting his parents. He wishes he were dead so he cannot hurt them. He is inconsolable. Mom is upstairs hating herself, but still reeling in her own despair and afraid if she tries to say anything to Blake now she will only make it worse. She falls asleep.

In the morning light, she seeks out Blake and they talk. She apologizes for losing her temper and she reminds him that, regardless of anything that happens, it is her love for him that is more important than any meal. She notes the trap she sets for them all by placing too much emphasis on things going perfect, and she notes that she has work to do on how she reacts. She is a work in progress. She is imperfect. She is going to mess up again, but she hopes she will learn from last night. It is not easy living with OCD in the family – not easy to be a parent. She strives to keep learning, keep improving.

*Good Morning!

*On the eve of the annual conference of the International OCD Foundation (IOCDF), which is taking place in Chicago, I am re-posting this entry from a while back. OCD is a serious disorder that can profoundly affect lives. Knowledge and treatment can make a world of difference.

This is a piece I wrote for myself about three and a half years ago – before I started writing this blog.  It reflects the feelings I felt at seeing my son stuck in an OCD ritual, and my struggles with a public that often does not understand that OCD can wreak havoc on lives. 

Image courtesy scottchan@freedigitalphotos.net

Image courtesy scottchan@freedigitalphotos.net

“Good morning!” I say in my most cheery voice as I open the car door and a load of kids tumbles out. I’m working at morning valet at my son’s school, a volunteer position I’ve helped with for the past four years. “Have a great day!” I wish them as they enter school for the day. Across the parking lot, I catch sight of my own son, standing by my car.   I can make out the brown curls on the top of his head, which is bowed in prayer. I check my watch – 20 minutes have passed since he began this process. Twenty minutes on a prayer that reasonably ought to take less than five. I can see him repeating the same motions he’s done over and over already. I even think I can see him mouthing the same words.

Enough already,” I think to myself and begin to walk in his direction.

“Be right back,” I tell my fellow volunteers as I leave my post. When I get to him, he doesn’t acknowledge me. He’s deeply, fervently in prayer.

Image courtesy David Castillo Dominici @freedigitalphotos.net

Image courtesy David Castillo Dominici @freedigitalphotos.net

“Hon,” I ask, “can I help in some way?”

Absolutely no reply. His lips move at rapid-fire pace and he’s planted in place. I put my hand on his shoulder.

“It’s time to go in to school now,” I tell him.

“Mom! I was almost finished! Now I have to start it all over!”

“Honey, you’ve been saying the same prayer over and over for the last 20 minutes. It’s enough. Go join your friends before school starts.”

“I have NOT been saying it over and over. I keep messing up or skipping parts so I have to start again and get it right. I almost had it this time and you interrupted.”

“I don’t think the point is to get it perfectly right. I think it’s about what’s in your heart. You-know-who is just trying to trick you.”

I say this last part in reference to his OCD, which we’ve known he’s had since he was 7. He is nearly 14 now.

“Really? Do you think so?” he says sounding just a little bit hopeful.

“You know that’s the truth. Come on, you can fight this.”

“No, no, no. I have to get it right,” he says. “Just let me do what I have to do.”

“Come on, honey. Stop and go to class.”

“Mom!!!”

“Fine! It’s your OCD. You handle it the way you see fit.”

I throw my arms up in exasperation as I walk back to the waiting line of cars. He goes back to his prayers, trying to finish before he is tardy to class. My heart is heavy as I watch him being caught up in this cycle…trying to get it just perfect and falling short over and over again. I want to make this better for him, want him to be able to go hang with his buddies who are all together before school begins, but I am just an interruption to a process he feels he must go through.

Not long ago I saw a segment of an interview of Howie Mandel by Larry King. Larry was asking Howie about his OCD. At one point Larry looked at Howie and asked, “It’s not a severe mental illness, is it? I mean, it’s not depression.” Larry went on to talk about how we all have a little OCD and how he has all his vitamins and medicine lined up in a certain order and takes them in that order. Howie did his best to explain how OCD can severely impact someone’s life, but I never really felt that the point hit home.

I think Larry’s question reflects what we see in the media about OCD. People with OCD are portrayed as quirky, silly, and super organized. Maybe they are controlling and bothersome. What we miss seeing is the anguish and the suffering. We do not understand how OCD can hold an individual – and entire families – hostage to it. If we can ask the question, “It’s not a severe mental illness, is it?” then we have never witnessed a child with hands so bloody and oozing from over-washing that they wince with pain if anything brushes against them. We have not had a family hike interrupted by the un-ending screams of a child who is certain he is about to die because there may have been a Lyme disease carrying tick on the shrub that brushed up against him. We have never had a sheriff’s deputy come over to us in alarm because our child is screaming so horrifically that they sound like they are being torn limb from limb. We have never had a family meal interrupted over and over because our teenage son has to stop eating to repeat a ritual before he can go on eating. And we have never seen a 13-year-old boy reduced to an exhausted crumpled mass in his mother’s arms after fighting off the demon in his own mind.

“It’s not a severe mental illness, is it?”

Yes, sadly, OCD is a severe mental illness, and it attacks the things that are most precious to a person.   People think our family must be very religious because they see our son in prayer all the time. What they do not realize is that the religion our son practices bears little resemblance to any religion we practice in the home – or that anyone practices anywhere for that matter. His practices are born out of a fear that OCD gives him – a fear that something awful will happen if he doesn’t get things just right. What used to be a source of enjoyment, connection and deep meaning for him – and for us all – has become a source of endless doubt and a cycle of torturous repetition that has long lost its original intent.

Yes, there is treatment. There are terrific, highly effective treatments – and my son is in treatment now. He has beaten OCD to a pulp in the past. With this relapse, he is a teenager, in the throes of puberty and determined to be independent of what Mom and Dad want for him. So we wait, with hope that the day will come that he will decide that he loves himself more than he loves fighting us. We wait for the day that he turns his strong-willed nature against the OCD that currently holds him in its grasp and moves toward a freer life. But it’s going to be one heck of a war when it comes because, yes, OCD can be severe – and it grows in strength over time. In the meantime, our family will be here, honing our skills so that we can back this boy up when he is ready to fight.

For more information and to find help, visit the website of the International OCD Foundation: https://iocdf.org/

One Forty-One A.M.

I'm not even allowed in his room...

I’m not even allowed in his room…

Crash!

I wake from my sleep and sit bolt upright in my bed. Did I just hear something in the house? There’s light coming through our bedroom door, which is cracked open so the cats can come and go. I glance at the clock. One forty-one in the morning.I glance at my hubby, who is fast asleep with his head buried beneath his pillow. Clearly he hasn’t heard a thing. I’m not afraid as I hear noises coming from down the hall – something moving against the wood floorboards. I get out of bed and walk down the hallway, eyes squinting as they adjust to the light.

Remaining laundry in the overstuffed hamper

Remaining laundry in the overstuffed hamper

I’m not surprised by what I see. It’s Blake putting the last pieces of laundry back into a hamper that had apparently just fallen as he’d struggled to take it to the laundry room. The laundry hamper is stuffed fuller than it ever had a right to be. Bed linens – a multitude of them – spill over the edges, making the hamper top heavy and burdensome. Before I finish my walk I already have the sense that OCD is here with us.

“Blake, what are you doing?”

My seventeen-year-old is distracted by this task he is involved with.

“I have so much laundry to do. My bed is all messed up. I think the cats peed on my bed stuff.”

“Can you turn out some of these lights?” I ask. There are four different sets of lights on.

“Soon.”

He tries to stuff three comforters and one blanket into our washing machine. The washing machine is not expanding to fit the load, yet he keeps struggling.

“B, that’s too much. It won’t fit.”

“It has to.”

“Even if you get it in, it’ll damage the machine.”

“But how will I ever get all this laundry done?” he wonders, more to himself than to me.

“You’ll get it done one load at a time.”

“But my bed…my bed is so messed up…”

I wander into his bedroom with him and I instinctively sniff the sheets for the telltale cat pee smell. I already know I won’t smell anything. Blake keeps his bedroom door shut all the time. The cats don’t go in there.

Pee in the bed? Not me.

Pee in the bed? Not me.

“Honey, this is your OCD getting to you and trying to take charge.”

Blake looks at me wide-eyed. For the first time in this exchange I really see him. His skin looks clammy. There’s panic hanging over him. His eyes are vacant; Blake is not home.

“I want to clean. All I want to do is clean,” he says rapidly. Then he makes his way back to the laundry room.

I realize that my being there is not helping the matter. I’m too tired and I don’t have much patience in this state. I follow him to the laundry room.

“How will I ever get all this laundry done?”

“Blake, I’m going back to sleep honey.”

Blake doesn’t acknowledge me. I shut off two sets of lights as I make my way back down the hallway.

“Our son is having a psychotic break,” I mutter.

The hubby pulls the pillow from his head.

“What?” he responds. I can tell he’s disoriented.

“Oh, I was just babbling that B is having a psychotic break. I know it’s not funny. Poor guy is down the hallway doing laundry and freaking out that the cats peed in his bed.”

“Oh.”

And just like that he pulls the pillow back over his head. In the early days of OCD this scene would have had us both out of bed trying to coax our son to go to sleep. Now it’s just part of the fabric of our days (and nights). I feel for my son as I drift lazily back to sleep. As I hear him fumbling in the distance, I know things will be better in the morning – at least the panic will have passed and I’ll see my son back behind those eyes. For now, it’s just another episode on our journey and in the life of a teen who says he can deal with this all on his own.

Bed with mismatched sheets following OCD's practical joke on Blake

Bed with mismatched sheets following OCD’s practical joke on Blake

It’s Not Paris, But it Works for Me (Guest Post)

Today’s post is a guest post by my hubby:

imageWhenever we start a new endeavor, we have high hopes, anticipation, and curiosity as to where that endeavor or journey will lead.  It’s no different when our children come into the world.  Will he or she be a Nobel Laureate, a Hollywood heart throb, the next President of the U.S., or, perhaps, even more pedestrian, simply a good human being? Either way, we have expectations and curiosities about the journey, all the while anticipating that we will end up at the destination we envisioned. I liken this to traveling abroad.

When we board a plane to Paris, we expect that our journey will take us to…well…Paris. When we have children, we expect that our journey will take us to our metaphorical, “Paris.” More often than not, though, because life is just life, we find ourselves disembarking somewhere quite different than Paris – like Istanbul.  Then we wonder, “How in the world did I ever get here??” When we realize that didn’t arrive in “Paris,” we can chose to either appreciate the uniqueness and beauty of our new, unanticipated destination or pity ourselves and curse the gods of destiny; it’s completely our choice.

A couple of weeks ago, Angie came home from a trip to the market to find Michael, Blake, and I all in the pool.  Angie quickly noticed that, while Michael and I were in bathing suits, Blake, was fully dressed. Yep, jeans, t-shirt, and socks.  She just looked at me and I just looked back at her with a smile.

For a lot of families, a day in the pool would be no big deal, because that is just “Paris” for them. In our family’s case, we didn’t land anywhere near Paris. OCD and anxiety diverted that flight. Blake doesn’t like a lot of things.  He doesn’t like getting wet. He doesn’t like going outdoors. At times, he doesn’t like to socialize, even with his family.

My “Paris” was having a family like the one in National Lampoon’s, “Vacation.” I sort of planned and built our lives accordingly.  I intended us to be the Griswold family; the kids and Angie even call me “Clark” because of my family idealism.  I always wanted a home with a pool so that we’d have plenty of days playing there and making memories. Trouble is, especially with Blake’s dislikes and “rules,” it just doesn’t seem to happen much.

On that sunny day, when the boys and I were just livin’ the dream, the idea of Blake being fully clothed in the swimming pool didn’t bother me a bit. I just sat back and reveled in my trip to Istanbul, and loved every minute of it.  I hope that you enjoy whichever destination that you may find yourself.

Why I Cried at Machu Picchu

Machu Picchu with Huayna Picchu at top right

Machu Picchu with Huayna Picchu at top right

I’m afraid of heights. Maybe it’s not heights I’m actually afraid of, but of falling from heights. Yes, that more accurately describes it. I am terribly afraid of plunging downward, knowing what is about to happen to me. My fear of falling is so powerful that I cannot even watch as others meander near the edge of a cliff. And, yet, I recently found myself navigating the “death stairs” of Huayna Picchu, a mountain just behind Peru’s Machu Picchu.

Isn’t This a Blog About OCD?

You may be checking the page you are on right now. Isn’t this a blog about a family that has a teenage member with Obsessive Compulsive Disorder? What is the mom doing sharing about her experience climbing a mountain peak? I asked myself about that as I considered writing this piece. What I answered is that my son didn’t develop OCD in a vacuum. He has a mom who is choc full of fears and worries. I may not have OCD, but I know what it is to struggle with anxiety. Before Blake was treated for OCD, I didn’t have a clue about how to stand up to fear and worry. This journey with him has opened a whole new world for me.

In case you’re wondering, my fears include, in no particular order (and are not limited to):

  • Slipping and falling from great heights
  • Plunging to my death in an airplane crash
  • Suffocating in a small space
  • Speaking in public
  • Talking to new people
  • Talking in groups

Some of these fears I’ve conquered. Others are still a work in progress. Climbing a steep mountain peak is definitely in the “not conquered” column. When my hubby added Machu Picchu to a list of destinations for our twenty-fifth wedding anniversary trip, I was fine. Or at least I was until he added Huayna Picchu (whose peak is 8,920 feet [2,720 meters] above sea level) to the itinerary.

I fretted about Huayna Picchu from the moment I learned it towered over Macchu Picchu by almost 1,200 feet (360 meters). I heard that it had steep stairs that went almost straight up. I heard that it was slippery and that there were no ropes to hold onto. I doubted I could make the climb, not because of skill, but because of fear. Other tourists we met along the way convinced me I could do it. They seemed to brush off my declarations of terror of falling. Just don’t look down. I decided I’d make up my mind for myself once I was there.

Arrival at Machu Picchu

The morning we arrived at Machu Picchu, the hubby and I stepped off a train, were lead through a circuitous path to a bus by a woman who disappeared as quickly as she breathlessly arrived, and wandered through a crowd until a smiling Peruvian guide named Walter inquired as to our names. Walter’s kind presence helped me feel more at ease, and his way of stopping to look at the view each time we’d climbed another set of stairs helped me adjust to being at this new altitude. I imagined that maybe I might be okay on this hike to the peak that was to happen the next day. Then Walter said something that shattered the illusion.

“It was a sad day for us at Machu Picchu yesterday,” he told us. “A tourist fell to his death while taking a photo. Please be careful and do not go too close to the edges.”

Fell? What? Indeed, you may have seen in the news that a German tourist fell and died at Machu Picchu recently. Terror crept over me. Any confidence I might have built up in preparation for the trip melted away. I asked Walter about Huayna Picchu. Did he think I could climb it? He repeatedly replied that I didn’t have to climb all the way to the top; there was a place I could stop and begin my descent. His response did not reassure me.

Let’s Go!

At the entrance to Huayna Picchu

At the entrance to Huayna Picchu

The morning of the Huayna Picchu climb we had to be in line for our bus by 5:30 am. Huayna Picchu is strictly controlled; only 400 people may climb it daily. Two hundred people may climb at 7 am and another two hundred at 10 am.  We had the early shift. I was terrified. I paid multiple trips to the restroom before our ascent. I allowed the boisterous high school students who arrived as we did to go ahead of us. Then I focused – one step at a time. When the trail grew steep, I watched one handhold at a time. Then we reached the point where all I could see seemed to be straight up with no ropes to grab hold of.

My breath grew rapid. My heart pounded. I recognized it for what it was – fear, anxiety. As much as I counsel others and knew what I was experiencing, it still felt awful. Would I go on, or would I stop? Maybe I’d make poor decisions if I was too anxious. I glanced at how high up we were and backed up against the mountain.

“I don’t think I can’t go any further,” I told my hubby.

Who Will You Climb For?

My hubby came over and talked to me gently. No fear of falling on his part. He was ready to go, but he knew that I needed a “WHY” to go any further.

“You can do this,” he told me. “Climb for your mom. Climb for my dad.”

His words penetrated through my fears. My mom has limited mobility; a climb like this unlikely if not impossible. His dad passed away sixteen years ago at age sixty-four, just as he was retiring and planning to take his dream trips. How could I, alive and with my limbs still working well, back down because of a silly fear – because I was hyperventilating? How could I allow a fear to keep me from something others dream of? I broke down in tears and buried my head against the mountain. Other hikers thought I was experiencing altitude sickness and offered suggestions. My hubby thanked them and waved them on. And then we climbed.

I focused only on my hands and feet. One movement at a time. One hand or foot in front of the other. Don’t look up. Don’t look down. Suddenly, the trail evened out and we entered an Inca holy place. I had made it! I looked through a window to the earth below, and I sobbed and sobbed.

Sign near the summit of Huayna Picchu

Sign near the summit of Huayna Picchu

I stood for a moment and took in this accomplishment. We took photos, triumphantly, at the Huayna Picchu (Waynapicchu) sign, only to realize we weren’t quite at the summit. There was still a trail of thin steps leading into the sky, and I’d reached a point where the direction was one-way only. I had no choice but to continue.

View from the summit of Huayna Picchu

View from the summit of Huayna Picchu

Once at the peak, the way down included straddling a rock perched over an abyss, passing though a tunnel under rocks I had to squat to maneuver, and navigating the same thin stairs in the downward direction. I spent a lot of time on my behind until I reached stairs that didn’t seem so vertical to me. In the end I was spent, exhausted, and satisfied.

Descending through a rock tunnel

Descending through a rock tunnel

Why Did You Cry?

As we made our way down the hill on the bus, my hubby queried me about the adventure.

“Why did you cry up there?” he wondered as the bus pitched through yet anther switchback turn.

I tried to place myself back in those moments atop the peak. I recalled the flood of emotion that washed over me and the release that came with it. Why did I cry? I cried with relief for finally having arrived at that moment after days and weeks of trepidation. I cried for my family members who would have wanted to do the climb, but could not for one reason or another. I cried for opportunities lost in my life because fear held me back. I cried for having found the courage to stare at fear and continue in spite of it. I cried at the thought of those I’ve had the honor of watching stand up to fear and triumph – whether they be patients, family, or friends. And I cried with the recognition that fear does not have to define us or limit us. Fear can be faced. When it is we can grow and flourish beyond our imaginations.

 

Too Many Anxieties

Image courtesy of stockimages at FreeDigitalPhotos.net

Image courtesy of stockimages at FreeDigitalPhotos.net

The hubby and I have just returned from a two week trip to South America. We are celebrating 25 years of marriage and it is the longest we have gone away from our boys. They’ve just held down the fort for two weeks, Michael exercising his young adult wings and grandparents checking in on them.

It has been a long day; it’s nearly 8 p.m. here and the hubby and I have been up and traveling since the equivalent of 2 a.m. It’s hot and we are hungry, yet all we want is to spend time with our young men. We pick up food and take it out onto the patio. It’s cooler here than inside the kitchen. Michael and the hubby start to swap stories. Michael shares what he learned about how difficult it is to run a house. The hubby talks about traffic in a country south of the equator. I notice that our table is not complete. Blake, who was preparing his own meal, has not materialized outside. I peek inside the kitchen and see him sitting by himself at the table.

“Blake?” He is quiet. “Blake, are you going to join us outside?”

Blake’s head is down and he is somberly eating away, appearing more like he is forcing himself to eat than enjoying any of it.

“We’d love you to join us.”

“I…I can’t. Bugs…”

“There aren’t any bugs that I can see tonight.”

“It’s just. I have so many anxieties. Eating outside brings up too many. I don’t want to stand up to them tonight.” He places his head in his hands.

“You don’t need to. Thank you for telling me. I’ll miss you. See you after dinner.”

I go back outside to join Michael and the hubby, who are still engrossed in conversation. Blake finishes his meal alone at the kitchen table. I ache just a bit for the piece of our family that is not here and for how I can see that Blake is struggling. Yet I’m glad he could put it into words, without screaming, without melting down as he might have in the past. He is learning to put his struggles into words. He is learning to share that he is anxious and that he doesn’t have the strength to challenge his fears right now. That is growth. Perhaps another day his strength will win out.