Owning it

After the response to last week’s blog, I’m going to keep us on this medical trauma train for a minute. I haven’t had the opportunity to do any clinical work yet, but I have been thinking a lot about the topic and so many of your comments, and that has to count for something. So, here’s where I am at…

As caregivers, we spend so much time resisting the idea that our loved one is a burden. We love them, we want to care for them, they deserved to be cared for, and if we don’t do it who else will? There is an initial urge to insist that we can handle it, that it’s not as challenging as it seems, because we don’t want pity, and we don’t want our loved one viewed in a negative light. In a world that measures human value in physical or financial productivity, where we are fighting for our loved one to be noticed and included at the most basic levels, the last thing we want to do is show the toll their health takes on us as well.

I know Adelaide’s life was valuable because ALL life is valuable. I know there is no life that is more or less valuable than any other. But I also know that these beliefs, which seem common sense to me, are not held by everyone. Which means that in advocating for the needs of medical caregivers, some people will hear their disability bias confirmed. So, caregivers shove it down, hold it back, and force forward momentum because it’s our loved one that matters most.

This assumes that when one traumatic event is blending into the next, caregivers are even able to acknowledge how the events are it’s affecting them. Once the seizure is over, once they are breathing again, once the need to barter with Death has passed, it is easier to keep on keeping on, because the medications aren’t going to deliver themselves, the appointments are going to make themselves, and no matter how hard I wish, the laundry is not going to wash and fold itself.

We call this our normal, because it becomes our monthly, daily, or weekly. But it is about as normal as repetitive shark attacks.

If we aren’t able to recognize the trauma as its happening, then we certainly can’t verbalize it, ask for help, or even know what help should look like. And you can forget about finding time to address it. This is more than some self-care, mani/pedi bull shit. In fact, one of my trauma triggers IS getting my nails done, because it is a scenario where I feel like I’m held hostage. That if there was an emergency at home, I wouldn’t be able to immediately run to her.

Her.

Adelaide.

Except Adelaide isn’t here anymore. The odds of needing to rush home for a medical emergency have dropped significantly. But that doesn’t stop my lungs from wrapping around my heart when I’m in long lines, stuck in traffic, or waiting for my nails to dry.

It has taken me years to realize that this is a trauma response. Because I didn’t believe that I deserved to use the “T” word. Trauma was reserved for people who endure horrific abuse, life altering accidents, war, or their own medical scares. It’s not for the people who take care of them. It was so easy for me, as the caregiver, to make my trauma small because these critical events were happening to someone else’s body. This was Adelaide’s trauma, not mine.

Except these events were happening to me. I was witnessing them, living them, caring for my daughter through them. I saw the fear cross the doctor’s faces, even though they tried so hard to hide it. I told and retold her medical history as if was reading a book report and not a collection of my worst nightmares. My body responded as if it was my own life at stake each time she toed death’s door. Each and every time. Over and over and over again.

I think my first step on this trauma journey has just been to acknowledge that I have endured trauma. That making it small, or trying to reattribute it to someone else, will not make it go away. Whether I want it or not, this trauma is mine. AND that is not a reflection on the value of Adelaide’s life. It is not a measure of burden. It just is.

Photo ID: Adelaide is wearing pink, purple, and orange floral pajamas. Her cheeks are flushed, eyes are closed and has a nasal cannula wrapped around her face. She is leaning on Kelly, who is wearing a purple t-shirt with white lettering. Kelly’s eyes are closed and she is leaning into Adelaide’s head.