I catch the judgments when I mention PTSD to even those closest to us.
I have the utmost respect for our military, and our servicemen and women. They are the front lines, defending us and keeping us safe. They experience horrors I could not imagine, and I am daily grateful for them. The PTSD many suffer is real and no one would ever question it.
Post Traumatic Stress Disorder does not stipulate the trauma.
Some days I try to ignore it. I try to hide it. I try to work around it. I try to pretend it’s not there. I try to lean into the pressures of well-meaning friends and acquaintances alike that we should act “normal” so as not to marginalize ourselves. I hear the logical statements about fitting in. I hear them.
We talk about “everyone has something.” We are acutely aware that we are not the only ones that suffer. We are aware of our blessings. We share those blessings with others when we can. We listen compassionately. We are believers in the notion that, “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.”
We are aware that we can be perceived as aloof, or detached, or disinterested. We are also aware that largely by circumstances and partly by our own design, we are alone. We haven’t really ever spoken to you about why… We try to listen compassionately. We try to be the people you need. We try to be lighthearted and positive when we feel like we are being crushed.
When the diagnosis of PTSD was first given to me as part of an analysis of my beautiful daughter’s response to the constant traumas that had shaped her life, I was physically ill. And then I was really sad.
And through the years I have tried to wish it away. I have tried to convince and cajole and distract. I have tried to rationalize. I have tried to blame myself. I have tried to be angry. I have tried to pray. I have tried to walk it off. I have tried to medicate it.
I have brought her to quality therapy. I have introduced medication. We have tried strategies. We have tried simple grit. We have never quit. And there is progress. But it is not easy.
I’ve been home a few weeks now with a foot that won’t heal. I am trying to put into play some things that have been on the back burner for too long. I am rediscovering my faith, and leaning back into the peace that has anchored my soul for so long. I am learning new things, like the operating system on a new computer. I am trying to find value in the waiting to heal.
I have also had some time to watch some old home videos, transferred from the portable video camera that was state of the art when our only child was born in 2003.
I look at some of those old videos and I laugh and smile. And I hear the purity and innocence of a life untouched by physical and emotional pain, and the cruelty of the loneliness that often surrounds both. And I laugh in spite of myself while the tears stream down my face.
We are strong. We are determined. We are compassionate. We are intense. We expect a lot from those around us, because we expect a lot from ourselves. We are often isolated, marginalized, and left to live on the edge of all things social.
You see the diagnosis of Cowden’s Syndrome was not the start of it. The first medical intervention was before the age of 6 months…
The years of hospitalizations, immune deficiency, chronic illness, food allergies, constant GI upset, speech, OT and PT services, led right into one surgery after another, with scans, doctors visits, and a few emergency room trips sprinkled in. There were arrogant doctors and medical staff, ignoring that we were literally walking through fire trying to survive. There were teams that would not communicate, and problems we had to try to solve on our own. There were well meaning people in our lives asking if she was “better” because they could handle nothing other than a positive in the midst of this crazy, wild storm we were living in.
The diagnosis at the age of eight formalized the fact that we were definitely different. It gave an answer while raising more questions and increasing the isolation, as parents scheduled play dates with children who became friends while we rode the FDR drive for hours after a day of work and school. They went to the mall, or to the movies while we headed to PT to bring that knee back from surgery 4,5,6,7,8…. It was inevitable that the divide would grow.
I told her she could do anything. And I meant it. I still mean it.
She is academically rock solid. She is an athlete. She is a good friend to those who let her be. She is thirsty for knowledge. She is insatiable in her desire to make the world better.
She’s also angry. And its hard to see it. It’s hard to feel it, and to watch it. But, it’s real. And it’s valid. As much as we were able to do for her, the basic joys of childhood were taken from her. From colic, to hospitals, to bullying so severe it almost broke her, to being just outside the edge of every circle or group… A week in Disney every year helps, but even the Mouse doesn’t have a bandaid big enough.
We stay busy. It is the best way. But sometimes it breaks down. This has been an extra tough week. There isn’t one reason why. It just is sometimes.
It is real when the medical world is overwhelming you.
It is real when the pain is chronic.
It is real when the thought of getting out of bed is just too much.
It is real.
It is real when you’re holding a 3.9 GPA.
It is real when you’re in costume on the stage.
It’s just flat out real. And most of the time you have no idea what it looks like. The costume is better than Broadway. The mask is strong, crafted through years of survival instinct.
It never goes away, and yet it takes over without notice at the most inconvenient times.
I’ve passed this advice to parents through the years who are new to our diagnosis.
“It is a lot to handle.”
It is hard to be kind to those who are different. It is hard to be with people who are sometimes just “a lot.” It is hard to care.
But the reality really is you just don’t know. You don’t know the struggles facing anyone you pass by on the street. You have no idea.
It’s neither a contest, nor a competition.
We are not perfect. It is harder when the hurt is in its most raw periods.
That means you keep paying it forward, without expecting it to be repaid to you.
If we all, ourselves included, can remember that everyone has real struggles, and we can all focus on kindness, I’m pretty sure we can start real change.
One smile, one inclusive invitation, one held door, one kind gesture at a time.