May the Free Make Others Free

 

Originally published on The Redeeming Things blog in September 2013. Edited only slightly here; note that where I talk about four years of freedom … it has now been nine. Amen.

unsplash74Last week, while listening to an audiobook by Anne Lamott, she mentioned a line she tries to live by: “And may the free make others free.”

I had to rewind a few seconds and listen to it over again.  And again, amazed at the stark and beautiful way these few words summarize the last four years of my life.

I have obsessive-compulsive disorder, an anxiety disorder that preyed on all I most value: faith, friendships, vocation.  Forget all media has ever taught you about OCD—it is not a funny, quirky, bothersome nuisance.  Instead, it is a hellish, tormenting thief and tyrant.  OCD is slavery, and I was in bondage to it for over twenty years.  I was a tormented pot that complained to the Potter, “Why-why-why did you make me this way?”

Four years ago, I stumbled, uncertain and afraid, through the door that led to freedom (labeled “Exposure and Response Prevention Therapy”).  It was a tremulous victory, and I’ll admit I was shocked to discover things like peace and joy re-entering my life for the first time in years.  Freedom gave me an exhilarating high that I have not yet come down from, even in four years.

These days, I am an OCD awareness advocate, a member of the OCD Network to Recovery, and a leader in OCD Twin Cities, an affiliate of the International OCD Foundation.  I communicate every week with people who are broken by anxiety disorders and other mental illnesses, my own OCD branding me as their war buddy, allowing me to move in closely and show them the way to health.  I advocate for Exposure and Response Prevention therapy, defend the right to and benefits of medication, and push back against the stigma of mental illness.  I talk to parents who don’t know how to help their children, to people whose anxiety makes their own home a prison cell, to those who are needlessly ashamed that they have a brain disorder.

OCD, once the thorn in my side, has become my platform.

So the Potter finally answered my tormented question.  I was given obsessive-compulsive disorder so that I, now the free, may make others free.

Live OCD Free app: my review

I first learned of the Live OCD Free app when I was in Boston last October, attending an event hosted by the International OCD Foundation.  I was intrigued by the idea of a web app that could simulate or guide Exposure and Response Prevention, so I picked up some handouts to take back to my university, and that was that.

Until I had lunch with Faith, this incredible 9-year-old who is battling with OCD.

Somewhere in the back of my mind, I had stored the memory that this app had a children’s version to it, so I contacted the company and asked if I could have a free trial of the app so that– if I liked it– I could promote it on my blog.  I received a very kind email from Dr. Kristen Mulcahy, who also sent me a promo code.

Live OCD Free app

What it is: 
Billed as “your personal pocket therapist,” this web app allows you to undergo cognitive-behavioral therapy (CBT), specifically Exposure and Response Prevention (ERP), either on your own or with the help of a therapist.  With it, you create a hierarchy of exposures, practice your exposures, and record your progress.  You can even easily email your progress reports to your therapist!  There is an adult version and a child version (both available with just the one purchase).

Child version:
In the child version of the app, there is a video that shares the story of the “Worry Wizard” with the child– in the video, the Worry Wizard happens to be another person (a bad kid, ha!), which I kind of like.  It goes along with the idea of narrative therapy that YOU are NOT the problem, the PROBLEM is the PROBLEM.  By showing children that the Worry Wizard is a completely separate entity from themselves, they are able to treat OCD as the enemy and not themselves.

ERP is then made into a game of sorts.  Children (along with the help of an adult) create a list of exposures (with simple prompts to aid them).  They then can practice their exposure at the click of a button.  If there is a need for an imaginative exposure (creating a loop tape/recording), they can do that within this app as well.  There are also built-in timers to remind users to practice their exposures and to record their anxiety levels (for the progress reports).  It’s really easy to use, very self-explanatory.

Adult version:
The adult version is very similar to the child version except that it just tells it like it is. 🙂  

PROS:
The secret weapons (child version)/toolbox (adult version).

Oh my goodness, I absolutely loved this feature*.  When you choose to practice an exposure, you set the timer for how long you’d like to do it.  While you are practicing an exposure, you can access the secret weapons/toolbox area, which includes:

1. Reasons for fighting (both versions).  A place where you can review and record your reasons for fighting OCD/the Worry Wizard.
2. Uncertainty agreement (adult version).  Where you acknowledge that you cannot know things with certainty.  This records the date that you “signed on” for this!
3. Relaxation (both versions).  Listen to an exercise in muscle relaxation.
4. Motivational messages and inspirational quotes.  You can even add your own!
5. Tips from other kids fighting the Worry Wizard.  Obviously, this is in the children’s version.  Loved it.  The quotes were so good and meaningful and encouraging without being enabling at all.
6. Songs (child version).  This included two songs for children (although there is a whole CD available on iTunes).  I have to admit, one of the songs– “Worry Wizard”– made me cry listening to the lyrics.  It just breaks my heart that children have to deal with this crippling disorder.  They are so brave!

*When I was doing my own exposures, I was told to focus intently on them … I wonder how this toolbox jives with that, or if that was only my therapist’s method.

Live OCD Free User’s Guide
This is wonderfully written, very clear.  If someone is choosing to do ERP on their own and without the guidance of a therapist, this user’s guide will be critical to their success.  Since I have undergone CBT, I now find it fairly easy to recognize obsessions and compulsions– and to identify appropriate exposures.  However, I would not have been able to do this if I hadn’t gone through ERP myself already.  The prompts are very helpful (and OCs often know what things bring them the most anxiety), but this user’s guide will be a huge help in sorting through obsessions, compulsions, and exposures.  I emailed with Dr. Mulcahy, and she said that sometimes people will meet once or twice with a cognitive-behavioral therapist just to set up their exposure hierarchy before attacking the actual exposures on their own.  Even if you don’t have health insurance, I can see where this would be very helpful.  If not, the user’s guide will assist in that matter.

Progress reports
This app makes it easy to see your progress.  I love that.  A visual reminder of how far you’ve come can go such a long way!

CONS:
There are very, very few cons to this app.  The graphics in the video of the Worry Wizard were not my favorite, and (of course) being a writer, I thought the story could have used a little polishing, but all in all, this app is phenomenal.  

The cost is around $80, which at first seemed like a lot of money to me … but it’s really not.  Not for what you get.  An ERP experience for $80 is a bargain (even with awesome health insurance, I still probably paid about $300 out of pocket to meet with my cognitive-behavioral therapist).  And the freedom to be gained through this process is priceless.

I imagine that CBT without the guidance of a therapist would also be more difficult, especially as there is less accountability, but the truth of the matter is that CBT takes a lot of commitment, no matter what.  I have said it before and I will say it again, you know you are ready for CBT when the hell you’re experiencing daily is worse than the hell you’ll have to go through with CBT.

All said, I highly recommend this product.

I cannot say enough good about CBT/ERP and how it gave me back my life.  Whether someone chooses to go the traditional route of seeking out a cognitive-behavioral therapist (note: NOT a talk therapist) or chooses to use this web app … or chooses to use both in conjunction with one another … I am 110% for it.

The important thing is that you pursue CBT.

Live-OCD-Free_App_12

Lunch with Faith: discussing OCD with children

I had the privilege of visiting with Faith over lunch last week.  Faith is a nine-year-old third-grader, and she is the cutest nine-year-old in the world, all eyes and sweet, sweet smile.  Not kidding, you look at this little girl and think, Oh my gosh, a hug from this child could change the world.

Faith is the strongest, bravest nine-year-old I know.  She has obsessive-compulsive disorder, and she is dealing AT NINE with obsessions that buckled me in my 20s.  My heart just breaks when I think about the daily battles she fights, and it makes me hate OCD even more than I already do (with the passion of a thousand and one suns) for the way it could dare to target such innocence and loveliness.

How do you talk about OCD with a third-grader?

That was the question that I grappled with in the week leading up to this lunch.  My OCD first appeared when I was seven, but I didn’t have the vocabulary to really discuss it until after my diagnosis, which didn’t come until after college.  I am such a huge advocate for cognitive-behavioral therapy, but I’m so ignorant as to whether this is even possible or appropriate for a child to tackle.  When it nearly snapped me in half at age 26, is it even reasonable to expect someone one-third of that age to try something like it?

What we ended up talking about was the narrative therapy that I practiced on myself and my OCD.  Narrative therapy reminds us that the person is not the problem; the problem is the problem.  I chose to separate myself from my OCD by imagining it as a black dot that followed me around … and I got the upper-hand by belittling it.  Most often, I would “dress” it in a pink tutu and make it twirl around.  My OCD hated this.

Perhaps this sounds crazy to you, but it was a good strategy for me … and hopefully for children too.  Faith was intrigued by the idea of the black dot, and I told her, “It’s okay to bully the black dot because it’s so mean and it’s a liar.  So you get to bully it back.”  (Please, Jesus, don’t let me be teaching her bad life lessons … can’t you just picture her telling a teacher, “I bullied the kindergartener because he was mean to me first, and this girl I met told me that was okay!”  Oh gosh.  Ha!)  But I think she understood that we were talking specifically about the disorder, the black dot.

And we sort of talked about CBT elements too.  I told her, “When the black dot tells you that you have to have your locker clean before you go to your next class, you can ignore it because it’s a liar.  And when you feel like you need to wash your hands again, just to be safe, you can ignore the black dot because it’s a liar and a bully.  Instead …”

“… I tell it to put on its tutu!” she said, giggling.

Exactly!

So … there is the element of response prevention.  Hopefully introduced in a way she can understand.

I hope it helps her.  I know it helped me, but I was also going through intense CBT at the time.  What I do know is that I hate OCD, which could dare to steal joy from this sweetest little girl, who should be enjoying third grade, best friends, recess, pencil collections (or was that just me in third grade? ha!), and Jesus, her Savior, whom she loves, and about whom her OCD whispers lies to her.

I remember being that young, remembering overthinking every thing, remember the obsessions and the intrusive thoughts and wondering why no one else my age thought about these same kinds of things.  I am so glad that Faith has a name for OCD at such a young age, but I am deeply saddened that she has to struggle.  My heart hurts for all obsessive-compulsives but today especially for the young ones, who are so confused, who feel so guilty, who are so scared.

I wish I could tear through the lies and fear for them, show them truth.  I am trying.

Does anyone know of tools for obsessive-compulsive children?  Is CBT an option?

sad girl3

obsessive-compulsive since age seven

My OCD struck at age seven.  Strep-throat-gone-to-hell and all of the sudden curse words were running through my head as if I were some foul-mouthed sailor, when the truth of the matter was that I was a shy (Yes, really!  Hard to believe now!) girl from a conservative home, who would have never DARED to utter those phrases outloud.

I began to worry that I would lie if I gave my opinion, so for a while, my answer to everything was “I don’t know.”  Favorite color?

I don’t know.

Did I like my teacher?

I don’t know.

Should we do this or that?

I don’t know.

Ridiculous.

I have this image in my head of running to find my mom under the clothesline, smacking my fist against my forehead, and confessing.  My poor mom.

I wish we’d known then.  It would be another fifteen years before my OCD would even be named, but I’ve wondered what life would have been like had we caught it back in the summer of 1989.  Drat you, internet, for coming along too late!

Every once in a while I google things like “my daughter is attacked by bad thoughts” or “my daughter has bad thoughts” or “my daughter keeps confessing” to see how quickly the trail leads to OCD.

My heart breaks for the obsessive-compulsive children out there, wild minds racing, hearts terrified, robbed of childhood.

Parents can look for the following possible signs of OCD:

  • repetitive confession
  • constantly seeking reassurance
  • raw, chapped hands from constant washing
  • unusually high rate of soap or paper towel usage
  • high, unexplained utility bills
  • a sudden drop in test grades
  • unproductive hours spent doing homework
  • holes erased through test papers and homework
  • requests for family members to repeat strange phrases or keep answering the same question
  • a persistent fear of illness
  • a dramatic increase in laundry
  • an exceptionally long amount of time spent getting ready for bed
  • a continual fear that something terrible will happen to someone
  • constant checks of the health of family members
  • reluctance to leave the house at the same time as other family members

I waited fifteen years to be diagnosed.  Just take your kiddo to the psychiatrist.*

*I’m not mad at you, Momma. 🙂  How could we have known?  You’re my favorite.