I have been feeling lots of guilt and shame about not
writing more about our experiences this summer.
I keep using the excuse that I’m going to school and any free time
should be used on assignments, or preparing for my job teaching music this year,
and it IS those things. But also, I feel
daunted by the thoughts of trying to sum up what we have been through this
summer into blog entries. I know I can’t
ever explain it in words or do this experience justice, and so I have avoided
even trying. But so many people continually encourage me to
write, which I appreciate. So, I guess
if I were to try and describe this experience of Chloe’s relapse and our second
round through Intensive Outpatient Therapy at the OCD and Anxiety Center, I
would say it has honestly been the best worst thing that has happened to
us.
You wonder how I can say this? Can the words best and worst even exist in
the same sentence describing the same thing at the same time? After weeks and weeks of DBT (Dialectic
Behavioral Therapy) in our group skills class, our family knows well that YES ,
two realities CAN exist at the same time and the term is: middle path. Along with “middle path” we’ve learned all
kinds of new skills and terms that once made no sense to us and now we, along
with our friends at the Clinic, use them in our daily vernacular. Strange and power packed phrases such as “ride
the wave”, “hook statement”, “quick and reckless”, “opposite action,” “radical
acceptance” is the strange language of our own little elite OCD and Anxiety club
where forever friendships have been made with the patients and their support people,
therapists, and CA’s (Clinical Assistants) who are the small sliver of people
in the universe who truly understand what we are going through. I
marvel at the ability to feel uplifted, hopeful, and empowered at this place
where truly heartbreaking, gut-wrenching hard things exist and happen every day,
but I did.
Case in point, this picture I took of some letters that hang
on the wall at the clinic. Patients and support
people have written letters to OCD and anxiety such as this one:
I think these letters do a good job of highlighting both
realities that exist at the clinic: the
cruelty of these disorders and how much they destroy people’s and family’s
lives and rob them of joy, but also the hope that exists when you have tools to
fight and make progress. Here’s one I
liked from a support person, which is my role so I could really relate to this
mom:
This one is my favorite:
One thing I notice is that each letter has a middle path
concept – you can suffer and still find joy.
That concept sums up our summer: we found joy, humor, learning, growth,
friendships, love and more in the midst of a really crappy situation. Actually, it was BECAUSE of the crappy
situation. Of course, being a spiritual
person I attribute this to God because I have learned that if you look for Him,
you will find Him in even the worst of situations. And I’ve learned that this is what God
does. He brings about good things from
bad things.
Something new we all develop at the clinic is a deeper sense
of empathy for others. You can’t help
but come away without feeling for others when you learn of their experiences
and struggles, and you can’t help but feel an extreme sense of bonding and
comradery knowing that we are all in this together. Someone, somewhere has always got it worse
than you do and it puts your problems into perspective really fast.
We’ve learned more about people’s struggles with all kinds
of anxiety and ocd disorders we had never even heard of including:
misophonia – a disorder where even small noises sound huge and
cause a stabbing pain in the person’s head to the point that they fill with
rage at the simplest thing like eating dinner at the dinner table with clinking
silverware.
Body Dysmorphia – when a beautiful girl looks in the mirror
and her brain interprets that image as an ugly troll so that she is ashamed to even
go out in public and hates herself.
OCD fear of harming others – when a person has intrusive
thoughts that tell them they are going to harm the people they love and they
live in constant agony and fear.
Scrupulosity OCD that is so bad a person can’t live life
without feeling so bad and unworthy and afraid that they are compelled to pray
for forgiveness every few minutes.
This is hard stuff, guys.
I had no idea the kind of suffering these disorders can cause people and
families and I will NEVER AGAIN trivially refer to OCD as “I’m just OCD-ing
about this” or “I’m just OCD about how I like my kitchen” etc. Doing so would downplay the very real,
intense suffering that true OCD has caused my young friends.
But back to the best worst thing concept…
This is a trivial example, but I used to complain about the
time/gas/driving distance/family sacrifice it took each day to drive from South
Weber to Centerville and back. Once I
got to the clinic, I realized that of all the patients there, we lived the
closest to the clinic. One family was
from Cedar City, and had relocated to Provo where they were living in their RV
so they could drive the hour to the clinic every day. Another mom had to uproot her family from
Idaho Falls and live in a VRBO condo with her small children during the week so
that her daughter could receive treatment at the clinic. Others drove from Park City or Logan. EVERY DANG DAY. Monday through Friday. You can’t even miss a day or they charge
you.
Us moms got to know the Centerville Target VERY well and
when Chloe graduated, one mom friend even gave me a Target gift card to use for
shopping “therapy” to help with my “emotional regulation” (another clinic
phrase).
So you see how this happened so many times. Instead of daily
treatment feeling like a heavy burden that had overthrown our lives, I thought “How
lucky are we that if our family has to deal with this crappy thing, the only
effective treatment available in the state happens to be a half an hour away?” If I ever started feeling sorry for myself or
discouraged, I couldn’t help but quickly change perspective.
Another example, when we first arrived at the clinic again
and sat down on Kate’s couch with Chloe, I was barely hanging on to hope. I felt so much shame as a mom that I hadn’t picked
up on any warning signs that Chloe was relapsing, and we were still so broken
hearted from the trauma of losing my nephew Jake just three weeks prior. Needless to say, I wasn’t in a good place.
Kate opened with, “How are you?”
Me: “I’m both grateful for the clinic as a resource and
horrified that we are here again under these circumstances,” I managed to squeak out. It took a lot of energy not to burst into
tears during those days.
“Totally valid,” she said.
(Kate is so good at validating and this skill ended up being the biggest
gift she could give our family. ) “In
fact, I would be a little concerned if you DIDN’T feel that way.”
I appreciated the validation, but it didn’t pull me out of
my self pity. I mean, as a mother, what
is the thing you pray for the most? For
me, it’s that my kids will be SAFE. That
my children will be protected, and that they will be okay.
Here, my child was not okay.
She wasn’t safe….she could have died, and it wasn’t by some evil stranger
who tried to harm her from outside our home.
It was from a terrible disorder that was INSIDE her brain, that I can’t
see, that I don’t totally understand, that we thought we had beat and was gone
forever like a bad dream…and it happened on my watch, right under my nose.
It didn’t matter that we had tried to be good parents, good
Christians, good Latter-day Saints, good citizens; it didn’t matter that I had
been a stay at home mom who had sacrificed a career and financial abundance in
order to dedicate her life to giving her kids a stable, happy upbringing. It didn’t matter that we tried to do those
things experts advised would help our kids grow up to be healthy and happy like
making them take vitamins, or eating dinner together as a family, doing wholesome
family activities, going to church, saying our family prayers and reading our
scriptures and doing everything we are “supposed” to do.
I had done everything right and this bad thing still
happened. And even though lots of people
were kind and supportive, I still felt judged and ashamed and wondered if it
was my fault.
Which is why I am so amazed at how quickly I was able to transform
from that lowly state into feeling hopeful.
Kate and the clinic made me feel hopeful that Chloe would get better,
but it was really the parent support group that pulled me from the depths of
discouragement in regards to my role as a mother and support person. Parent support group was every Friday and I
came to look forward to this hour more than any other part of the treatment
process. Words cannot describe how good
it feels to listen to, cry with, and share with people that truly
understand. I’ll never forget that first
day that we were asked to introduce ourselves and I shared that it was our
second time through IOP, feeling a little bit ashamed and like a failure as a
mom that I had not seen the warning signs and let it get so bad we were back in
IOP. Someone said, “So, you’re a veteran” in a tone
that was kind of admiring sounding and something clicked within me. My perspective changed from feeling sorry for
myself to feeling so grateful that I had the ability and experience to give hope
to these first-timers because I had experienced this process before. And although it sucks that this is a family
issue, I actually have learned A LOT
because OCD and Anxiety have been such a big part of our lives.
Nothing can turn me around from feeling discouraged faster
than being able to comfort a crying mother by giving them words of hope that I’ve earned
through sheer suffering. For example, I
know not to freak out the first three weeks of treatment because I’ve already
learned the hard way that when your kid starts treatment it ALWAYS gets worse
before it gets better. One of the CA’s likened
the first part of treatment like this:
Imagine you’re on a lifeboat in the middle of the Pacific
Ocean paddling furiously towards Japan only you don’t see any land in
sight. You’re wondering why you’re doing
this, is it even working? Paddling is so
hard and exhausting and you hate it and you don’t want to do it today but you
still have to. This is what it feels
like for our kids when they start treatment.
And us support people aren’t even sure it’s working either but we still
have to make them paddle on the yucky lifeboat every day and tell them it will
be okay. But then one day, you see land.
And you are rejuvenated because you realize you have been making progress
and you are encouraged by the fact that you are getting closer and closer with
each stroke.
I was able to give many people a little hope in these
meetings because I had already been through this roller coaster and I was able
to tell the other parents that the process REALLY DOES work, and that after a
while, they WOULD be able to see land.
I was able to assure people from what I have learned that it
is NOT their fault that their child has this disorder. So many parents wonder if it is because of
their parenting or something they did to cause this. This incorrect belief is often aggravated by
well meaning people who make dumb comments and assumptions. Being a parent of a kid who struggles with a
mental illness is hard, and sadly this is almost always compounded by the false
and uninformed perceptions of others. It’s
REALLY HARD not to let other’s judgments get to you. Validating someone else in this experience
can provide so much hope and comfort and in our support group I not only
received it but was also able to give that validation.
Being able to give someone else hope and comfort while you
are suffering feels REALLY GOOD.
What also felt good was watching Chloe do the same thing –
use her previous experience to uplift, encourage and inspire other
participants. I could tell it made her
feel good too, and we would sometimes drive home in awe of what just happened
that day at the clinic because feeling that special kind of good just wasn’t
something either of us expected to gain from yucky treatment.
I can say for a surety that because of this awful relapse
our family is stronger. I am a better
person. I have gained skills to be a
better spouse, parent, friend and teacher.
We have new friends we love dearly, that we never would have met
otherwise. We have learned so much and
have grown so much. I wouldn’t trade this
experience for the world.
What’s going to be interesting moving forward is how we are
able to improve on our new skills in managing this disorder and the ups and downs
that accompany living with OCD and Anxiety, and how many others we will be able
to help because of it. It’s especially
scary starting the school year again and watching Chloe face those triggers while
trusting that she will use those skills she’s learned. But
thankfully, I have a support group in family,
the people at the clinic, and alumni
that will always be a part of our inner circle so I know we won’t have to do it
alone.
So after a tear-filled graduation day, Chloe and our family were sent off to wobble on our own two feet with the weekly instead of daily support of the clinic heroes, which will later taper off to two weeks and then monthly etc. I feel a bit like I did when I was a new mom taking my newborn baby home from the hospital, knowing that I won't have the trusty and capable nurses by my side at a moment's notice, but also knowing that they are only a call away. I feel a bit nervous but mostly confident because Chloe's got this! I couldn't be more proud of her, honestly. She is a remarkable young woman and I love her so much.
I'll close with a few more pictures from the clinic:
This daily reminder loomed over us support people every day in the group skills room, reminding us that we not only get to learn Parenting 101 in this lifetime,
but being the support person to a child with an anxiety disorder we also get an extra bonus set of parenting guidelines:
Chloe's graduation spread, churro chips with ice cream courtesy of the Dickson family.
Another wall in the group skills room. Each participant had a llama that climbed through the different stages of the mountains each week until eventually reaching "Maybe" heaven.
Maybe is a hook statement for people with OCD because it reminds us of the possibility of uncertainty and being okay with that.
Chloe's Llama
An example of stuff we learned about in group skills. This was a whiteboard example on the week we learned about Opposite Action.
Another letter
A really popular quote used ALL the time at the clinic.
