Ninety Percent Sure

Read: Risk VERY VERY Small

A few weeks ago, after so much waiting, a number of anxious phone calls and a spout of me crying in a small hospital room, we finally got the results of the pre-pregnancy genetics tests back.

On the test that screened for over 200 potential genetic problems, we discovered that Nathan and I are each carriers for one disease.  However, since it is not the same disease, the risk that we have an infected child is 1/4,400 (0.0227%) for one of the diseases and t 1/3,520 (0.0284%) for the other. 

As for the other genetic test for Nathan, the results came back with a 90% chance that he doesn't have the disease.  Combined with the fact that he doesn't meet the clinical criteria, the doctor felt pretty confident that he does not have it.  However, he did say that they could be even more sure if they compared the results with a blood test from a family member.

Now, this is where I feel I really had a triumph over my OCD tendencies.  Something I struggle with that is very common with OCD and anxiety is that I find it very hard to live with any doubt.  OCD feeds on doubt, and so you want to be 100% sure of everything.  This can lead to all sorts of unhealthy behaviors from checking and rechecking to unhealthily obsessing over horrible possibilities that have only a small remote chance of either being true or becoming true.

You have a feeling that somehow you will be on the wrong side of statistics.  If there's a 97% chance that something is good, it is very easy for someone with OCD like mine to focus on that lingering 3%.  The most ridiculous part is that this fixation on small chances and the feeling that the unlikely occurrence is sure to happen only acts up when considering improbable bad outcomes.  

For example, if someone told me there was a 2% chance I would die tomorrow, I would be very uncomfortable.  I would spend the whole day thinking I was going to hit that 2%.  I wouldn't feel any safety in the 98% chance that I would be okay - I would feel doomed.  But, if it was reversed and someone told me there was a 98% chance I would to die tomorrow, I wouldn't focus on the 2% chance of survival and feel a lot of hope.  It isn't about a misunderstanding of how numbers or chances work as much as constantly fearing the worst while also expecting it as unavoidable.

But when we got these results, I was satisfied.   The odds from the overall couples' screening were clearly astronomically small, but I even feel good about the 90% assurance on Nate's major test.  I heard the results and didn't want to keep digging.

I know we can never with 100% certainty prove the negative.  Even comparing the results to a family member's results, the doctor admits that they still could not make a 100% guarantee.  The truth is that seeking any assurance higher than 90% won't really make me feel any safer.  Starting a family means accepting a lot more risk in my life.  I know by now that the OCD fears and worries aren't going to magically disappear, but accepting these results and feeling good about moving forward was a step in the right direction.  

So, here's to moving forward even when you're only 90% sure.  Sometimes, that's the best thing to do. :)

I'm an Email Hoarder.

I've never felt like I understood hoarding.  I know it's a very real OCD compulsion that some people have, and I even know a few hoarders, but I just didn't feel like I could relate.

But as I was looking at my email inbox the other day, and I got it.

I have over 2300 messages in my AOL (yes, I'm almost 30) email inbox that date back to 2009, and that is after a recent purge.  That figure also isn't counting the messages I have saved outside of the inbox in folders with titles like "Funny Past,"  "Tutoring," "Travel," and "Old Teacher Comments." 

I showed my sister and she told me it gave her anxiety to see.  But deleting emails from certain people is very unnerving and uncomfortable for me.

Why do I still have "Fwd: Cat-Faucet Video" and "One for the Dogs" from 10 years ago? 

There's this horribly part of my brain that gets switched on whenever I want to delete an old email from a loved one.  My thoughts start hitting on this terrifying realization: Someday that person is going to die and they won't be able to send you email anymore.

I don't want to lose a reminder that my mom sent me a care package in college or something she thought would make me smile.  This doesn't explain every email though, because I have emails from college that aren't even from loved ones.  

Why can't I delete certain messages from my sorority days?  I realized that in many ways it's actually for a similar reason to why I keep the messages from people I care about.  It's because of this tragic fact: I know that I can never get the messages back.

Holding on to those emails helps me hold on to this past that is gone forever.  There's something comforting in being able to look at those old messages from when life was simpler.  So, I feel this compulsion to keep them.  Time never stops, but the emails are some way to hold on to these moments that just seem to keep slipping further and further away.  

I know not every hoarder has these same worries, but I imagine that some hoarders of items experience similar feelings.  It wasn't until recently that I recognized the connection in myself.  

I feel like I can actually relate and understand hoarding in a whole new way now.  So to all the OCD hoarders out there - I want you to know that even in uncluttered houses, some of us are having the same fears...  My clutter is just hidden in cyberspace.

What would an OCD song sound like?

Happy to skip these tracks

"What would an OCD song sound like?"  my coworker asked last week.  He's a music man and often connects experience with sound.  We had a brief discussion about it, and he concluded, "That's something you could blog about."

So here we are.  I've seen articles on music related to mental health before, and there are certainly some great songs about what it's like to have mental illness.  I also know that music can be therapeutic.

Still, given music's power to inspire feelings, it was interesting to consider how the traumatic parts of OCD would SOUND.

My mind immediately went to horror film soundtracks.  This is fairly logical, as OCD and anxiety play on fear, but certain songs seem to capture this kind of fear better than others (The Exorcist has a great theme, for example, but it doesn't match).  That said, here are my top three picks for songs that capture the feeling of experiencing OCD.

3.  Halloween Theme

One of the best horror movie themes of all time, the progression of the song also really fits the feeling of when anxiety and OCD combine.  The song starts out frantic, reminding me of that alert that comes over me - the general sense that something is wrong.  Then a more sinister sound drops, just like the feeling in the pit of your stomach when your OCD finds a target and the worrying begins.  

2. Psycho Theme

The incessant, alarm-like sound of the classic Hitchcock theme captures the discomfort of being hit by an unexpected OCD trigger and feeling unable to get the thought out of your mind. The thoughts are repetitive and feel inescapable, just like the loud blaring of this song.

1.  Jaws Theme

If there is a song that better captures OCD's sense of impending doom, I haven't heard it.  Like OCD, the theme starts out slow and foreboding and builds to nightmarish panic.  Intrusive thoughts can work the same way. One frightening thought comes along like a beat.  It would be harmless on its own, but soon your mind repeats and builds up the thought until you feel barraged and overwhelmed by worry, questions and concern.

I'd love to hear other people's opinions on this subject.  If you have OCD or suffer from any other mental illness, can you think of a song that sounds the way it feels?

The Waiting Game

Is it February yet?

Most people don't like to wait.  In our instant-almost-everything society, we want answers, results, and gratification, and we want them yesterday.

That said, those of us with anxiety disorders are notoriously bad waiters.  We were bad even before the internet had immediate answers.  We go negative naturally.  If you give me a situation with multiple outcomes, I am assuming the worst one until I have heard otherwise.  I may even invent a new possibility for failure or disaster that hasn't even been considered before.  Watch me.

None of this works in my favor as Nate and I are having some pre-pregnancy tests done.  My mom's side is of Ashkenazi Jewish heritage, so doctors recommend checking for certain genetic diseases, and my husband also has a serious genetic disorder in his family.

So we made an appointment with a genetic counselor.  I felt sick leading up to it, terrified of what we might discover.  Unfortunately, the initial appointment was basically a nonevent with no answers.  Instead, we each had a blood test to screen for a number of possible genetic problems that could be passed on to future offspring. 

The blood was sent to a lab and the real waiting started: two to three weeks for a call from the doctor to see if we hit an unlucky combo.  Knowing my anxiety levels, we considered not even doing the general screening because I can read a 2% chance as almost a certainty. However, we wanted to make sure we knew the risks we would be taking.  A few weeks of worrying would hopefully assuage some of the worst fears.  

A few weeks seemed bad enough, but the counselor also told us that the test could not screen for the issue in Nate's family.  For that, we would need to wait until March to get an appointment with a geneticist.  I have been concerned about this issue for years and thought we were finally going to get a real sense of what we were facing.  Now they wanted us to wait months longer? 

By some miracle there was a cancellation and we were able to see the geneticist last week instead.  Of course there were no answers there either; instead, we needed another blood test and the results of that test could take 6 weeks.  Those results could give us a definitive answer, but they could also be inconclusive, in which case we would need to get a family member of Nate's blood tested and wait even more.  

To top it off, the geneticist told us that they would only call if it was positive.  I explained that I have anxiety and would be waiting for a call and assuming I missed it.  He said to make an appointment in 4 months and we could go over the results... What kind of cruel joke is this?  Wait four months for the results of a test you are getting in six weeks?  

This was a test that could have ramifications for my husband's health and for our future family.  I want to know what we're facing so we can make a plan for how to move forward.  

Positive results won't change my love for him.  If I had known his results were positive before, I still would have married him.  That said, I want to know so we can take care of his health.  I want to know so we can have a sense of potential future issues.  Limbo - waiting and not knowing - is the worst because you have all the dread and no ability to control or plan.  God can only grant me the serenity to accept the things I cannot change if I learn what I cannot change.

I asked for alternative ways to get the test results.  The doctor suggested that he would memorize our name and make sure to call us either way.  I asked if I could call to check the results after 6 weeks.  I don't think he understood how upset I was until I started crying.

I know that I am basically a professional worrier, but I couldn't help but wonder: Are average people really just that chill?  Are most people willing to sit around not knowing if they or their loved ones have major disorders for months longer than they have to?

The days since the test have been interesting.  I am mostly impressed by how often I am not thinking about it.  The human brain (even the anxious one) is amazing in its ability to distract itself.  With my OCD, I can ruminate and worry and be hyper-focused on the negative and on fear.  However, even at my worst, my brain was still always moving.  Even my worries move around.  This week they have jumped from the test to groceries to taxes.

The truth is that this experience will be a great test of how I can handle parenting.  There are no assurances when you decide to have a baby.  There is no way to avoid all risk and ensure that your baby will be healthy.  You have to learn to be patient and to wait with some sense of grace and optimism.  If I can learn to handle these next few weeks, maybe I'll be okay handling 9 months, and then 18 years, and then a lifetime.  

For now, all I can do is take it one day at a time.

OCD and Puppy Parenthood

My perfect Luke & Lily.

On November 4th, my husband and I adopted two adorable puppies from PAWS (Public Animal Welfare Society).  Born in August, Luke and Lily are a mix of Shiba Inu, Pug, and Pomeranian.  They are a brother and sister from the same litter, and they are so cute it hurts.

What I've learned in a little over a month?  Puppy parenting is hard for anyone. Specifically though, puppy parenting is an OCD Nightmare.  Examples:

• My house is now a pee house.  They pee and poop where they please while learning to go outside.  
• I worry that I'm not doing right by them. What if I'm not being a good enough mommy?  I feel guilt and hate myself for things like sleeping in.
• I double checked the lock (I'm not even a lock checker usually) when I left the house because I know my babies are in the house.
• I feel guilt when I get angry or upset or frustrated at them.  I judge and worry about any thoughts I have about the puppies that I label as "bad."
• I feel guilt or worry if I tugged at their leashes too hard or picked them up and hurt them. 
• I won't let them have stick treats in their cage when we leave because I'm worried they'll choke.  Their safety is now a big concern.

Even given all of these things, I wouldn't trade my puppies for the world.  OCD attacks what you care about, but you can't let it take away what you love most.  Avoiding having puppies would only let the OCD win and let the fears maintain their power.  Having these puppies may challenge me every day, but I know that the exposure is making me stronger.  I know that each day I fight through I am better off than the day before.  

I hope other people struggling with the same types of fears are also able to work through and grow rather than live a life without dogs.  Dogs are so pure and kind - They remind us of what is really important: family, food, and naptime.

A world without dogs, even without anxiety, would not be a happy world for me.  Luke and Lily are my triumph, and I will work to get through my anxieties so I can be there for them.  Being their mom is one of the greatest privileges of my life.  I know it will make me a better person.

Plus, naps with puppies are even better than naps alone. 

Cracked Hands

Not a 90-year-old's hands. Mine.

Generalizations exist because they are true in some cases: Take the caricature of the OCD-hand-washer.

Not everyone with OCD is afraid of germs or contamination and washes their hands too much... but some of us do.  Unfortunately, lately I myself have fallen into the hand washing trap more.


This is especially annoying because one of my early symptoms of OCD was excessive hand washing.  I still remember this time I was watching SpongeBob and kept having to get up and wash my hands because I touched the floor.  It happened enough during one episode that it was an "aha moment" making me realize I had a problem.

Hand washing issues can take different forms.  Even after I stopped washing my hands too often, I struggled more with washing them too long when I got started.  How much soap is enough?  How long is enough?  With my OCD, if I go by what feels "right," I am often over-washing.

I have actually been doing relatively well for a long time with it, but now living in a new house with more cleaning responsibilities has somewhat reignited my hand washing and excessive cleaning proclivities.

When I clean dishes, I always want to wash my hands before and after...  Having new puppies means more messes and more hand washing...  I also probably wash my hands too often during the process of cooking because I worry about contamination (My mom's fear of raw chicken has become well instilled in me after many years).

My issues make me dread situations where I know I will have to wash my hands.  I'm very fortunate that I am still pretty under control, but I hate having to worry about how much soap it will take or how long it will take to feel clean.  Notice the choice of words: it is not about being clean as much as the feeling of being clean.  It becomes about cleaning until you know you won't feel anxious about it.

With the washing and the colder weather coming in, my hands look horrifying.  They hurt and I hate looking at them, but they are also an important reminder that my work is not finished.  Sometimes the OCD tendencies you feel are behind you crawl back.  In some ways this is a tragedy, but getting down on yourself for slipping up doesn't help.

Wherever you find yourself, you just need to keep moving forward.  The battles you fought before can be won again.  

Oh, and moisturizer can help too!

OCD and Processing Sexual Assault

It's OCD Awareness week 2018, and I wanted to write a post that would help bring to light a lesser-known impact of OCD.  

Given the recent discussions of sexual assault and violence against women, I thought it would make sense to share my small story and discuss how OCD can impact these already difficult experiences.  Whatever your political affiliation, I think we can all agree that any instance of sexual assault is a tragedy.

When I was in high school, I slept over at a friend's house one night- let's call her Tiffany.  That morning, I woke up to the feeling of someone's hand on my chest.

Groggy, only half-awake and disoriented from sleep, I opened my eyes to see Tiffany's brother standing over me.  He retracted his hand from under my shirt and backed away.  I watched confused and didn't scream or move...  I just fell back asleep.

When fully woke up later, the whole situation seemed so bizarre that I thought maybe it was a dream... but it felt so REAL.  

That is when the OCD part of me started to creep in with self-doubt.  My OCD started making me question the memory.  Did I REALLY feel something?  Was I SURE?  Wouldn't someone in that situation scream or grab the person's arm or shout? Was it possible it was just a particularly vivid dream?  

OCD craves definitive proof, and I had none.  

I told nobody - not even my mother, who I told everything.  I was not 100% positive.  My OCD had always given me an irrational, magnified fear of lying, and I didn't KNOW what the truth was.  

I also didn't want to lose Tiffany as a friend because she was really important to me.  I didn't want my mom to start a war.  I didn't want to be called a liar, and I really didn't want to be one: even today, I consider false accusations particularly heinous. 

I only knew two things for sure: I wasn't physically hurt and I wasn't traumatized. 

I came to a decision to just let it go.  Since I couldn't prove it happened, I figured I would be better off assuming it didn't.  I didn't treat Tiffany any differently afterward, and I carried on as if it was a dream.

I never even gave it that much thought until years later when he was arrested for a crime that validated my experience.  The day I learned was this weird relief.  I finally told my mom about what had happened. It made sense now, and I felt a very real sense of vindication.

But then the OCD guilt started to creep in.  What if I should have said something earlier?  Had something similar happened to any other girls? Had something worse happened to any of them? Had he gotten to anyone else because I didn't speak up?  

Please know that I do not assert dramatic victimhood: I consider myself very lucky that this incident was a relatively minor thing, and I do not feel like my experience is in the same category as most sexual assault cases.  Still, it has given me some perspective on how weird it is to process these kinds of incidents.  

Reading accounts from survivors of much more intense violations, I find that even people without anxiety disorders experience similar feelings to the ones my OCD amplified, from self-doubt to guilt.  I have also seen how weird it is to look back on it now.  All I have are the faintest glimpses of memory - mainly the sense of confusion and the strange unexpected feeling of someone's hand.  

I don't remember what Tiffany and I did that night or if anyone else was there.  I don't remember what I was wearing. I don't even remember exactly how old I was.  

Over a decade later, none of these details seem to matter.  I am fortunate that it was such a relatively insignificant moment in an otherwise extremely fortunate childhood.  

That being said, I know one question will always haunt me, "Why didn't you scream?"