Going through a staggering amount of paperwork and learning curves and medical interventions has kept us pretty busy over the last two years. At one crucial point, I was just trying to keep my soldier alive. And since I was pretty new to this game, I didn’t know how to talk about it for awhile.
But now that we’re a little farther down the road, there are some truths I’d like to share with you about what our life actually looks like on a day to day basis. Since we are no longer in survival mode, I feel that now is a good time to pass on a few things I have learned in this journey. It’s by no means an exhaustive list and since I can only speak about this experience through the lens of a caregiver, know there’s much, much more to this story.
1. We are a family dealing with mental illness so we probably don’t always fit into your idea of what a family looks like. Or sounds like. Or behaves like. So please don’t judge us by our bad days or our good days. Neither is entirely accurate.
On our best days we appear relatively normal, albeit a little louder and more colorful than most. We have some introverts, extroverts, flamboyant ones, shy kids and some ADHD and panic attacks sprinkled throughout.
On our worst days we have tears, meltdowns and struggles that you probably can’t understand. Please know that we are truly doing our best but if we react to a situation in a bizarre or inappropriate (to you) way, your judgment is going to be less than helpful. Stares or comments other than “Is there anything I can do to help?” aren’t encouraged.
Sometimes we are struggling so hard to keep it together as a family that we can’t be bothered with your idea of decorum. We are simply trying to survive.
2. One of the worst things you can do is negate our journey by saying something insensitive and demeaning. For instance, someone actually said the words, “He looks ok to me.” He might. In that moment. But what that person didn’t realize was that Mr. Wonderful hadn’t been out of our house for two weeks. And had fought through three panic attacks to get out the door.
Sometimes he might forget that he already had this conversation because his short term memory is shot. Or he might fly into a rage at those insensitive words because. You. Just. Don’t. Know.
Don’t judge our struggle based on what you can observe in a moment.
3. Our idea of a good day and a bad day is radically different than yours. A good day for us is no meltdowns, few panic attacks, and a decent wake up where Mr. Wonderful is able to get his bearings relatively early in the day. Maybe he feels good enough to get a workout, a shower and a hyperbaric oxygen chamber treatment in. This is a good, good day.
A bad day is, well, it’s not something I can put into words yet. I’m still working on it and I may have to get back to you on this one.
4. You might perceive us as flaky if we’ve had to bail out on you. Last minute. Again. We have the best of intentions. We want to be at your birthday party or graduation or celebration. Sometimes we just can’t.
Sometimes we’re actually on our way out the door but then Mr. Wonderful can’t leave the house. Or we start the day well but it progresses in the wrong direction. Or I know Mr. Wonderful will be ok without me but I’m just not up to getting the whole traveling circus out the door by myself. To friends and family, please understand our absence doesn’t mean we don’t love and honor you–we just may not be able to love and honor you in person.
5. We are doing the best we can. From the outside that may not look good enough. And sometimes it’s not. We try super hard. Every day. But even hard work can’t always get us where we need to be. That’s why one of the things we tell ourselves over and over is to give ourselves a break. And share some grace. And we try to be grateful for every good moment, every silver lining.
Because we’ve walked the edge between life and death, we now want to celebrate every good thing we can. Life isn’t a guarantee, and we aren’t promised tomorrow. These are now things we know for sure.
We no longer take life for granted. Or good days. Or breathing or remembering or functioning. Crazy may be our new normal but we embrace our crazy. We embrace our new normal. And we embrace each other.
The most important thing I can tell you about life with PTSD is that without our faith and each other we would have nothing. But with it, we still have everything we need.