To The Moon (Part One)

March 24, 2019

I have been struggling, trying to write this post.  I need to bring you through the actual “what happened” narrative, but I keep getting brought up short by my emotions, both current and past.  Despite the best attempts of my therapist (a hero if there ever was one!), I still feel a deep sorrow when looking back at our lives two years ago.  Cameron and I were flailing, struggling, so scared and uncertain. So very alone– even though we were surrounded by caring, extremely competent advisors and loving family and friends.  

If I allow myself to dream, I’d like to believe that putting these words out there just might reach someone else who is feeling alone and scared, for whatever reason.  It’s not so much the details of our story that are important, but rather the feelings we’ve been forced to acknowledge and examine that I want to share. The inside work, brought on by the outside reality.  As I said in my first post, this work is so hard that I would never have considered diving in so deeply, had it not been presented to me in the form of my child suffering. I didn’t have a strong enough sense of self-worth to tackle this project just to make me into a more authentic version of myself (stronger by acknowledging my weaknesses and letting go of a misplaced sense of control, smarter by un-learning the tricks and distorted thinking skills I taught myself to use to navigate in the world).  

So, I’m going to move forward, trying to balance both the outside story and the inside experiences.  I am unbalanced all the time (!), but after two years of working at it I can find my center a little more easily. . . .

I realize that I’ve got some catching up to do, now that I’ve introduced the main swimmers in my stream. And I don’t want to leave you hanging for too long after that especially dramatic ending to my last post. Our life, as we knew it to be, came to a screeching halt on the afternoon of June 12, 2017. That’s what happens when a child of yours admits to having planned his suicide two days’ prior, when you find out that it was only through the comforting words of your other child that your life, in fact, didn’t actually come to an end on June 10th. And somehow, you are still standing- one of the worst words in the world to come out of the mouth of your child didn’t deliver a fatal blow. You are, to your surprise, conscious and breathing, but a giant chunk of yourself has fallen off, left in the exact spot you were standing when you heard the news.

I believe that our bodies carry with them all the experiences and emotions of our past (hello IBS and TMJ and stress headaches, backaches and panic attacks)– but I also believe that I have shed actual body parts in various places along my journey. Well, maybe not body parts so much as parts of the person I used to be. These parts now mark our journey down into the rabbit hole/alternate universe we currently inhabit. When I look back I can easily see both what happened and who I used to be at these inflection points along our path. . . .

Even though we felt such an awful shock on June 12th, 2017, we weren’t entirely surprised when Ollie mentioned he had planned his suicide. We knew we were losing our fierce grip on the mirage of control, and had started looking for more help. With the psychiatrist (another hero on our journey), we reviewed what to do when you need to call the police or the ambulance for your child. We had a script we used to address the self-harm incidents– Cameron and I rehearsed our lines so that we could sound both calm and in control (never thought I’d use my theater degree for this). We had started working with an educational consultant (and hero), since the combination of Ollie’s chronic physical pain and anxiety made attending any sort of traditional school impossible. She was the one who held our hands and gently introduced us to the idea of a wilderness therapy program for Ollie.

I want to take a pause here to acknowledge how incredibly, incredibly fortunate we were- and still are– to have access to an all-star array of doctors and specialists. Even with this medical and mental health support super team, we just couldn’t give Ollie what he needed. We advocated for him in school, so much so that we took away his ability to advocate for himself. We piled doctor appointment on top of therapist appointment on top of physical therapy appointment on top of acupuncture appointment– and he still kept slipping into despair. When the idea of wilderness therapy was mentioned, I thought it would be like a really intense outdoor summer camp but with a mental-health focus. Sure, it would be hard and scary for us to leave our child, but after a summer away Ollie would come home and we’d figure things out.

(Not to spoil the story here, but that’s totally NOT what happens after wilderness therapy, not usually anyway, and certainly not in our case. This was not summer camp. There would be no first day of school photos with both kids and the dog on our front porch come fall, but we weren’t quite there yet. . . .)

I need to take another moment to express how lucky we were that the word “suicide” was not paired with an actual attempt– those would come later. We were lucky then, and we are lucky now– and I can say that not knowing how our story will end. So many other families aren’t as lucky, and many more carry the physical and emotional scars of attempts far more serious than the ones we have experienced with Ollie. I’m deliberately using the word “lucky” because it really is luck– any other word would carry implications of guilt, of responsibility, of ownership– and these words have no place in this part of our journey. Loosening the stranglehold of parental guilt continues to be a daily battle. We can’t take the credit for Ollie’s choice to stick around, and on the flip side, we can’t blame ourselves for Ollie’s self-harming and suicidal thoughts (typing this is easier than believing it).

There is much, much more to work through, this idea of how to go on functioning and living while your child’s illness is making suicide seem like a viable option– this is one of the main through-lines of my story. For now, though, I’d like to move a bit further along in our narrative– we were on the verge of sending Ollie away to a wilderness therapy program, but which one? How could he undertake the physicality of these programs while his joints were sliding in and out at random (part of the joys of his EDS diagnosis)? Our educational consultant suggested a program in Hawaii. Hawaii??? I had been saying for a while that we needed something completely different, since what we were doing was clearly not working– we needed the Moon. And Hawaii sure felt like the Moon, coming from our cul-de-sac in a Baltimore suburb. The program focused on holistic, whole-body wellness, and its location on the Big Island wasn’t far from a hospital if needed (something not available with the more traditional wilderness options out West). Given the distance, a trip out to tour the program and talk to the staff wasn’t viable, but we were reassured by the multiple phone calls with the admissions and medical staff, and by the past experiences of our heroic educational consultant. Somehow, she also managed to cut through our tight-fisted grip on the idea of “normal” and connected us with a therapeutic boarding school (TBS for short) in Asheville, NC- an option for when Ollie completed his time in the wilderness therapy program. It was slowly sinking in that the work done in wilderness was only the beginning, and Ollie would need all the supports a TBS could offer as he continued to struggle and learn and grow. Farewell, pretend summer camp and whatever imaginary homeschooling ideas I had desperately clung to these past intense weeks. Instead, we made more doctor and therapist appointments, filled out mounds of depressing paperwork, and placed endless calls to Hawaii and North Carolina.

In our free time, Cameron went to work, we went on a college tour road trip, and we tried our best to never let Ollie out of our sight (even at night). The dissonance between our outside stories and our inside experiences (between our public and our private faces) was stomach-upsetting, jaw-clenching, surreal. It’s ironic how such a universal feeling can feel so isolating.

Two weeks after Ollie’s 13th birthday, and exactly one month after Ollie’s suicide “confession,” we were on a plane to Hawaii, and

THE START OF LIFE AS WE NOW KNOW IT.

Friends, this blog is all about acknowledging how fear blinds us and silences us. And how we all need help. Please, please, if you are struggling, or if you know someone who might be struggling, know that you are not alone. Help is all around you. Call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255). For LGBTQ youth, you can call The Trevor Project Lifeline at 1-866-488-7386 (https://www.thetrevorproject.org/get-help-now/#sm.001w1z1zx183gdwjw5m1lv91ll55k). Parents, don’t let fear get in the way of having mental health conversations with your kids– feel the fear, and be brave anyway (it’s okay if your voice is shaking)– the Columbia Lighthouse Project has a protocol of 6 essential questions to help you get started: http://cssrs.columbia.edu/the-columbia-scale-c-ssrs/cssrs-for-communities-and-healthcare/#filter=.general-use.english