Don’t Say It’s Not About OCD

Blake sits in his chair looking intently at the therapist. He’s just begun coming with us to sessions and he’s questioning the therapist’s approach (because, well, Blake knows better than the therapist – or mom and dad).

“I don’t understand why my parents are rubbing a tissue on the dogs and putting it on my bedroom floor if I don’t show up for dinner,” he says. “If they wanted me to come to dinner, they just could have told me.”

Well, actually, we did tell him we wanted him to come to dinner. He just wasn’t making it on time most nights.

“But why the tissue?” he wonders.

“Well…” the therapist starts. “Your parents have noticed that there are some behaviors you have that are related to OCD. And they are concerned about them.”

“What?!” His head swivels in our direction. “You’re concerned about them?! Why didn’t you ever just tell me?! Why did you ever let me leave treatment, then?! Frankly, I see nothing wrong with what I do. Dogs are not cleanly and it’s disgusting to have anything from them in my room!”

Well, actually, we did tell him we were concerned about his behaviors and that we encouraged him to be in treatment, but he refused.

As the conversation heightens, the hubby starts to get antsy. He steps into the process.

“Look, I don’t think the primary issue is your OCD right now, Blake. I think your sleep is a huge issue, and your functioning on a day-to-day basis.”

At one point Blake leaves the room in frustration and our therapist looks at the hubby and I.

“Please don’t say it’s not about OCD,” he asks us, “because I’m not so sure it’s not. Blake has a lot of OCD behaviors that he thinks are normal. I don’t want to normalize those and have him think they aren’t a problem.”

When we leave the room, I begin wondering about what our therapist said. Other professionals have pointed to Blake’s depression in recent years, not so much to the OCD. What is he seeing? So, I observe, and I begin to notice what I’ve stopped seeing in the past four years:

  • Walk into bathroom, wash. Walk out. Walk back in. Wash again.
  • Open car back door. Seat is too dirty. Sit up front.
  • “Mom? What is that on the floor?”
  • “Mom? What is that in the box?”
  • “Mom? Is that color normal?”
  • Open car back door. Seat still too dirty. Sit up front.
  • Say prayer. Pace. Say prayer again.
  • Carry squirming cat downstairs, while holding said squirming cat as far as arms will extend away from you.
  • Open car back door. Seat still too dirty. Get a towel and clean seat before sitting.

Blake’s OCD is still very much there. It’s just been quieter. And he’s accepted it as normal (at least he seems to have). How is it connected to his deep, deep depression? That will be an answer we will have to watch unfold.

 

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What’d You Do With That Cereal?

Where's that cereal been?
Where’s that cereal been?

It’s late in the evening and Blake is in the kitchen pantry. He pulls out a box of cereal and pours himself a big bowl. He comes over to show us. It’s remarkable only because Blake frequently avoids eating from already-open packages of food. Why? Because, well, who knows how that food might have been contaminated?

“It’s the after dinner snack of champions!” remarks my hubby, as he continues to watch the college basketball game on the screen in front of him.

Blake comes over and shows us how very full his bowl is. The hubby and I both admire it. Then he pours the milk in…and hesitates. His head peers over the side of the sofa.

“You guys don’t ever pour yourself a bowl of cereal and then pour it back into the box, do you?” he asks us.

“Of course not,” my hubby replies, glancing at Blake and then back at the screen.

I perform a little inner eye roll and realize how innocuous this little exchange would look to most, except to those with OCD in their family. Blake has just asked for reassurance. He is asking whether the food is contaminated or not. Hubby has just accommodated with his reply.

Reassurance is one of those things that can be so unobtrusive and simple, like the question Blake just asked and my hubby so quickly answered. Or it can be extremely frustrating and seemingly never-ending, such as when a child asks a parent over and over, “Are you sure you washed your hands? You’re sure, right? There’s nothing wrong with it, right? You’re sure?” However it happens, reassurance-seeking can be a compulsion for those with OCD. They feel uncomfortable and then need to seek out someone who can remove that discomfort. It’s one of those things a parent learns, in treatment, that they ought not to do.

So hubby has just reassured Blake that the cereal is fit for his consumption. I, however, am feeling playful. I want to upset this apple cart just a bit.

“Blake, I don’t ever pour out a bowl and pour it back, but I do sometimes take a taste and spit it back in the box when I don’t like it.”

“Oh, Mom,” he laughs…and he eats the entire bowl.

Room to Grow

Full grown wax palms in Cocoro Valley in Colombia
Full grown wax palms in Cocoro Valley in Colombia

Blake’s Obsessive-Compulsive Disorder has been in a calmer place for a while now. I say that as an outside observer. I really do not know what goes on in his mind; I only know that our family life has been much less impacted. I do know that there are still lots of little symptoms I observe: he utters a prayer multiple times (presumably because it wasn’t just right the first time), he repeatedly does a ritual hand washing, his entire hamper appears in the laundry room when it is only partially full (that means there is something in there that’s contaminated everything inside). Still, this is a far cry from the days his OCD kept us from going places or had him in a meltdown.

Most of the time, when I notice a little OCD symptom, I manage to keep my mouth closed and just let Blake manage it. That’s generally best for everyone. It was no different when we were recently in Colombia (yes, in South America) on a family trip. Michael was overjoyed to be practicing Spanish, his college major, with the locals and trying out different accents. Blake was there because he wanted to be with his brother while he was on winter break. It was tough for him to be in a very unfamiliar place, and there were trying moments, but he persevered.

One day, we visited a farm that is working to re-establish the wax palm which is a

Baby wax palm we planted in the Cocoro Valley, Colombia
Baby wax palm we planted in the Cocoro Valley, Colombia

national symbol of Colombia and has come to be threatened. One of our tasks there was to plant our own baby palm. Our guide brought our little palm over to us and gestured for all four of us to take hold of it and place it in the ground. I noticed Blake wince and hesitate to reach for the clod of dirt around the plant’s roots. Then I saw him reach out wholeheartedly, grasping the tree with the rest of us. Together, we placed it in the ground and covered it with earth. Blake immediately started wondering where there was some water so he could wash the dirt off his hands. Since we were in the middle of the farm, there was none immediately available, and he seemed to tolerate that just fine. He even walked off to get to know one of the nearby horses.

I snapped a photo of our little palm. With any luck, it will last longer than any of us as it will take about one hundred years to reach maturity. In terms of Blake, there were no words that passed between any of us. I don’t know if anyone besides me noticed that Blake stood up to his OCD in order to help give that little tree its start in life and it really doesn’t matter. They are Blake’s moments to savor and grow from, or not, while I get to delight in my own mind.

Tenth Anniversary – Part I

Image courtesy of Chaiwat at FreeDigitalPhotos.net
Image courtesy of Chaiwat at FreeDigitalPhotos.net

This weekend commemorates an anniversary in our family. It is ten years since we recognized that our son, Blake, had Obsessive-Compulsive Disorder (OCD). I remember the weekend well. One event in particular prompted us to reach out for help and plunged us into new, unfamiliar territory.

Our family went boating that weekend. We weren’t very experienced with motor boating, and we excitedly packed up both boys, my parents, and one giant inflatable raft and made our way to a local lake. Goal: encourage Grandma and Grandpa to take a turn on the raft as it was towed by the boat. We were sure they’d love it.

We were successful in getting both my parents to give the raft a try. I remember the gigantic smile on my mom’s face and the “thumbs up” sign she threw us as she requested that the boat go faster. We had a ball swimming, picnicking, and taking in the beautiful day.

I don’t recall if Blake, then seven, got in the water or on the raft that day. I do recall, though, that at one point he became aware that people sometimes relieve themselves in the water. The recognition horrified him and, from that point on, he wanted nothing to do with the water. Exhausted from the activities and the sun, he fell deeply asleep on the boat bench. The hubby had to lift him from the boat and into his seat in the car, where Blake awoke as he was being buckled in.

A Child Possessed

Suddenly, it dawned on Blake how he had gotten into the car…and he began to scream. Gut-wrenching, blood-curdling, ear-piercing screams began to emerge from my seven-year-old’s mouth, causing the other five of us in the car to wheel around to look at what was going on. Blake looked like a child possessed. His face was contorted and bright red. He struggled in his seat as those screams kept coming.

Wash! Wash! Wash! Need to wash! Wash! Wash!….”

My parents looked dumbfounded and helpless in the back seat. Michael looked confused. My husband and I tried to talk to Blake, to calm him down. Our attempts fell on deaf ears. Blake just kept right on screaming. I didn’t know what to do. I felt something primal well up deep inside of me.

KNOCK IT OFF!!!!!” I heard myself bellow.

Can’t You See He’s Terrified?

Blake looked at me through tear-filled eyes. I’d frightened him (and probably everyone else in the car).

“Can’t you see he’s terrified?” my hubby said to me. He went to comfort Blake, but Blake wanted nothing to do with him, for it was his father, who had been in that urine filled lake and then carried him into this car, who was the source of the contamination that now tormented him. He didn’t want his father, or any of us who had been in the lake, near him. We were all a source of fear. My hubby and I could not offer comfort to our own child.

We drove home in near silence.

“We need to get help,” my hubby said to me.

“They’re going to say it’s my fault, but you’re right. We can’t go on like this.”

Today’s outburst hadn’t been the first. It was the scariest, though. It was the latest in a summer full of incidents that told me our younger son had OCD. I’d just kept hoping I was wrong. Everything I’d learned about OCD in my psychology graduate program pointed to the mother as the source of the problem, and I was terribly afraid and embarrassed. I was scared of what OCD would mean for my son’s quality of life, and ashamed that I, as a child clinical psychologist, did not know what to do for my son. It was time to surrender to the fact that we needed help. I silently prayed that there was something that would help. I would reach out to colleagues in the upcoming week.

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

Exposure and Response Prevention (ERP) Comes to Our Home (Re-Post)

This post originally appeared on this blog in August of 2013.  It has remained one of my most viewed posts.  The photos of Blake’s hands are probably the most clicked on photos in this blog, and appear at the top of Google’s Images when you search for anything related to OCD and hand washing (and they appear to be the first “real” image of what can happen to a person’s hands when contamination OCD leads to hand washing). I thought it was worth re-posting.

* Advisory:  This post has some photos of hands damaged from over-washing.  They may be difficult for some people to look at.

This is a nearly empty bottle of liquid soap.

IMG_1740

It looks pretty normal sitting on the bathroom counter until you take a closer look.  That brown ring around the bottom of the bottle is dirt from our backyard.

IMG_1741

The bottle of soap caught my eye several days ago and I snapped a few photos of it to remind myself of where we’ve been.  This bottle, with its dirt that is settled all around the bottom has been with us this entire summer – since before I even began this blog.  It is a remnant of one of Blake’s last OCD treatment sessions before we made the  heavy-hearted decision to stop therapy.  I am sharing it with you today, as a way to share what Exposure and Response Prevention (ERP) can look like.

What is ERP?

ERP is “the most important therapy in CBT for OCD,” according to the International OCD Foundation.  In a nutshell, ERP involves a conscious choice for a person with OCD to confront the items (thoughts, situations, etc.) that create discomfort and then not do the compulsions or rituals that would normally be provoked.   The idea is for the OCD sufferer to allow his or her anxiety and discomfort to abate naturally, without using rituals to cope and thereby creating healthier ways of coping.  This is commonly done with the help of a mental health therapist who is trained to do Cognitive Behavior Therapy (CBT) with OCD (for more information, Click Here.  Janet at OCDtalk has also written a thorough post on ERP.).

In our situation, Blake was really struggling with hand-washing compulsions (in addition to many others).  It was particularly bad at the time and he ran to the sink to wash anytime he felt the slightest bit “dirty.”  No amount of salves or special creams could heal the damage he was doing to his poor hands.  Below are some photos of how his hands looked around the time.  A reminder, these are 14-year-old hands.  They are painful for me to look at.  Anyone who pokes fun at compulsive hand-washing or thinks it is a joke has never lived with a family member who is suffering because of it.  The pain is real, intense and it interferes with day-to-day activities.

IMG_1199IMG_1198IMG_1149IMG_1150

While Blake’s treatment team had done ERP work with him on the hand-washing at the office (they would touch “dirty” things and then he would not wash), we were seeing little impact of the exposures.  We all agreed at the time that Blake was “white knuckling” it through the exposure and avoiding truly immersing himself in it by reminding himself that he could wash as soon as he got home.  He never gave himself the opportunity to allow his anxiety to come down to a manageable level.  So, it was decided that one of his therapists would make the trip to our home.  The plan was for Blake and the therapist to “contaminate” our entire house so that Blake would not have a place of safety to run to in order to avoid his discomfort.

The Day Arrives…

Blake was in agreement with the plan, until the actual day arrived.  He was tired of painful hands and was hopeful that this exposure would finally put his hand-washing to rest.  He greeted his therapist, happily, at the door.  As they began to prepare for the actual exposure, he began to change his tune.

“I don’t remember actually agreeing to do this,” he told the therapist.  His anxiety was already on the rise, and he was trying to thwart the exposure from going any further.  His therapist and I reminded him of his desire to get better and advised him how important a step this was toward breaking free from the grip OCD had on his life.

Begrudgingly, he followed his therapist into the backyard where both dug into the dirt and began to put handfuls of it into a squirt bottle.  Then they returned to the house where they filled the bottle with tap water and shook it vigorously.  It looked like a muddy mess.  I silently gulped when I saw it.

Are you really going to spray that mess all over my house?

This was not going to be easy – and I really have no problems with dirt.  I can sit in it, get it under my nails, whatever…  But this – even I wasn’t relishing the idea of my house being sprayed with a bottle of dirty water.  The thing is, that was just the point.  Yes, it is uncomfortable to have dirt sprayed in your house.  It’s even kind of over the top.  BUT, it’s not going to kill anyone.  It is survivable – you can even thrive with dirt on your belongings.  The point for the OCD sufferer is to stick with the discomfort long enough to recognize that it abates and that they can have a good life without having to give in to their compulsions.

Reticent as I felt, Blake’s anxiety was rising through the roof.  He now wanted no part of this exposure.

“I changed my mind.  I don’t want to do it,” he stated.

His therapist reminded him that this exercise, as uncomfortable as it felt right now, was going to help put his OCD in its place.  She asked me to bring her all the bottles of liquid soap that were in the house.  I complied and sought them out.  Within a few minutes, I was back.  Blake was not in a good place.

The Battle Begins

While I’d been on my mission, Blake’s therapist had opened my bottle of dish soap (which Blake uses all the time to wash his hands) and poured a good amount of that muddy water right into it.  Blake was going to have none of that and before anybody could convince him otherwise, he’d dumped the entire contents of the bottle down the drain and placed the empty container in the recycle bin.

“Blake,” she reminded him, “we need to contaminate all the things you use to relieve your anxiety.  You remember; we talked about this.”

“No,” he said firmly.  “I don’t want to do it.”

She continued with her task and began to pour muddy water into the liquid soap bottles I had brought to her.  Blake’s face grew red.

“I said, ‘No’,” he stated.  “LEAVE.”

The therapist continued.  She was finished contaminating his sources of washing.  She took a rag and sprayed it with the dirty water.

“Come on, Blake.  Help me.  Let’s contaminate the house together. It’s better if you’re a part of this.”

NO! LEAVE!”  His voice was powerful.  Anxiety was making way for fury.

“Remember?  You wanted to get better.  I’m not going to stop because I care about you.  I care about your hands and I don’t want you to have to keep living with OCD bossing you around and controlling your life,” she told him.

THERE’S NOTHING WRONG WITH ME!!!!  I’M TIRED OF THIS!!! I’M TIRED OF BEING TOLD THAT I’M SICK!!!  SICK! SICK! SICK! LEAVE!!! GET OUT OF MY HOUSE!!!!”

Blake was absolutely getting out of control at this point.  He’d never said an angry word to his therapist before.  Now, he was screaming at the top of his voice and looking like a maniac. My heart was breaking for him.  I didn’t know whether to cry or burst out into giggles at the sheer anxiety the whole thing was creating in me.

His therapist continued with her quest.  She carefully wiped the dirty cloth over all the furniture, the walls and our personal belongings.  Our entire family was going to be in on this exposure.  But was Blake going to buy into it?

Blake Hits His Breaking Point

“I TOLD YOU TO LEAVE!!!  I CAN’T TAKE THIS ANYMORE!!  I’M JUST GONNA…”

Blake lunged for the pencil cup on top of the cabinet near him.  In one swift move, he pulled out the sharpest pair of fabric shears in the house and raised it up over his head, as if he were about to plunge it into someone.  But it wasn’t clear to me if he was going for his therapist or himself.

“Put it down, Blake!” I commanded, but my words weren’t necessary.  Blake’s hand hesitated in the air and his expression turned to horror and he began to tremble.

“What am I doing?  What am I doing?”

He ran down the hallway to the living room where he started sobbing.

“I’m sorry.  I’m sorry.  I’m sorry,” he repeated.

The therapist stepped outside to call her supervisor.  Blake looked at me through his tear-filled eyes.

“I wouldn’t have hurt myself,” he said.  “I just wanted her to stop.  I can’t believe how far I went to protect my OCD.”  He cried quietly for a few minutes until his therapist stepped back into the room.

“Do you want to talk?” she asked him.

“I’m so sorry,” he said.  “I wouldn’t have done anything.  I know what I need to do now.”

He walked down the hallway with a half-smile on his face and picked up the abandoned squirt bottle.

“May I?” he asked.

“Of course,” she answered.

He began to make his way through the house, squirting that dirty water on the walls and the countertops.  He covered his game consoles in it and his favorite sitting areas.  Tears streamed down his face, but now they were tears of relief.  He knew this was what he needed to be doing.  Then, he directed the therapist to his room.

“We need to do my room,” he told her and he contaminated his entire room with that water, making sure he didn’t miss a thing.

The Aftermath

Blake adjusted relatively quickly to his contaminated surroundings (although I did put away all sharp objects, just in case).  He didn’t care that there were pieces of dirt in the soap bottles.  He relished it when I reminded him that our entire home was contaminated.  He’d won another battle in the war on his OCD.  His hands healed.

But the other areas his OCD affected were untouchable.  He wouldn’t budge on them; held onto them like a badge of courage and battled us to keep them.  Of course, this lead to us ultimately discontinuing treatment and to being in the limbo that we are in.

Today I still find remnants of that exposure, though it is about 3 months in the past.  There are still places that are too high for me to reach where he aimed that squirt bottle – and I kind of like the bits of dirt that remain anyway because they remind me that we still live with contamination to some extent.  They also remind me how far Blake was willing to up the ante to protect his OCD, how powerful the disorder can be in asserting itself.  And I wonder when Blake will grow in his own power and desire to take it on.  We can only wait and see.

You Don’t Know Where That Dollar’s Been

Image courtesy zdiviv @ freedigitalphotos.net
Image courtesy zdiviv @ freedigitalphotos.net

I seem to have written mostly about the part of Blake’s Obsessive Compulsive Disorder that takes the form of scrupulosity lately.  Yet, that is not the only way OCD affects him (and our family).  Rarely does OCD affect an individual in just one way.  Someone who fears catching a disease and frequently handwashes can also be afraid to touch something using their “bad” side.  Someone who fears they will accidentally shoplift can also feel the need to check the stove repeatedly to be certain it was turned off.  And someone who is scrupulous and fears offending God, like Blake, can also fear contamination.

Case in point, a little bit ago I gave Blake a dollar bill as change for a video game he purchased.  As I reached out to hand him the dollar, he motioned for me to set the bill down on the sofa next to him.

“Blake, just take the dollar.”

He pulled his shirt sleeve down to cover his hand.  Now protected, he reached for the dollar.  Instinctively, I withdrew my own hand.  I knew what was happening.  Contamination. He was sure the dollar was contaminated (I realize there is logic behind that. Money is one of the dirtiest things out there, right?).  I didn’t want to play OCD’s game, but maybe I was playing it by refusing to just give him the dollar.  Perhaps I should have just handed it to him and been done with it.

Blake saw that I was on to this whole contamination thing.  He pulled his shirt sleeve back up.  He reached out and took the dollar with his bare hand. Great!  No. Wait.  Too soon.  He immediately got up from the game he’d been playing and began to make a run for the sink.  Time to wash off those germs.

So what did I do?  Oh yes, I was brilliant.  I quickly moved into his path.

“You don’t have to wash, Blake.  You can fight this one.”

Why, oh why, am I so tremendously stupid sometimes?  I have promised this young man that I will stay out of his OCD and let him decide how to fight it and when to fight it.  There I was, breaking my word.  Ugh!  And, realizing I was breaking my word, I continued to stand there and encourage him not to wash.  He looked at me like I was a minor irritation, moved around me and washed that hand right up.

Great job, mom!

Okay, big deal, he washes his hands after he touches money.  Shouldn’t we all wash our hands after we handle money?  Probably – before we eat or some such thing – but if we can’t handle a dollar bill without running to the sink or if we interrupt a favorite activity to wash our hands because we feel a wave of panic over touching money, there’s something more going on. And, if our hands are cracked and bleeding from washing so much, we may just have a problem.

In Blake’s case, he still doesn’t see this as a problem.  At least, he doesn’t see it as a problem worth doing anything over.  I wish I could finally get over it and stop feeling a sense of responsibility for helping him deal with his OCD.  I certainly counsel parents in my practice not to take responsibility for their children’s OCD, especially when their children have no desire for things to be different.  My personal experience, however, lets me know how very difficult it is to really remove yourself from the situation.  We parents love our kids.  We want the best for them.  Sometimes what is best is to let them deal with that dirty dollar bill any way they choose and stay the heck out of it. 🙂