Well, that bandaid got ripped off (also known as trauma in the age of COVID-19)

Do you feel right now as if your heart is as vulnerable as it’s ever been?

Are you feeling unsettled? Are you experiencing intrusive thoughts, nightmares, hypervigilance, or rumination? How many of you, like me, are up at night wondering what life might look like next: physically (with regard to the virus), mentally (with regard to feeling scared, sad, anxious and isolated), or professionally (with regard to losing your job and/or financial stability)? How many of us are having fights with our loved ones and struggling on a daily basis? Achingly missing our parents or other friends and relatives on quarantine away from us? Our communities have been given information wherein the average family is sometimes treated dismissively, and the answers, if we are given any, are dim. We don’t know when this will end: the virus is terrifying, safety measures feel weak, and living with scant idea of how you’ll pay the next bill cycle is haunting. Literally nothing is predictable.

Correction: I suppose the only predictable thing is that nobody wants to get this virus, nobody wants to go bankrupt, and nobody wants to have a nervous breakdown— but the kicker is— nobody knows specifically how to go about absolutely preventing these things.

It is trauma, plain and simple, and the word we use: “trauma”, literally means to describe the things that make us feel the way we do right now: living in the shadows of our ideal selves. We find ourselves agitated, irritable. Sometimes sad, tearful, sleeping. We find ourselves checking whether we or our kids are clean enough, safe enough. We are using substances too much. We are physically isolated from the people we love. We wonder whether something or someone will hurt us. We are fearful, anxious. We find ourselves fighting with our partners, or kids.

We go into survival mode when we are experiencing trauma. We unconsciously predict what will next jump out of the woods to take us down (or read the news to find it out: murder hornets, anyone?). It is tough. It feels defeating. It feels like there’s no solution. It feels like we are bad people that attract danger. It feels like another shoe will drop at any time. It feels unsafe, it feels unresolvable. This is trauma. And these symptoms/reactions are what our brains do to survive inordinate circumstances.

I know all former NICU parents are already painfully aware of this, I also know that current NICU parents are unimaginably and enormously impacted by this (and it breaks my heart to no end and I wish I could help more). I also know that throughout this, my sister is taking her 8 year old son for chemo treatments— her family doesn’t get the gift of boredom or apathy throughout this, they don’t even get the gift to slow down and think about how shitty it is— unfortunately, too many people are in similar circumstances.

The pandemic, the political situation in the United States and elsewhere, and the interfamilial conflicts that we are all experiencing right now as a result of being locked down connect us in a certain way, even in this devastating situation wherein we feel so separated and paralyzed.

Sometimes, in times of uncertainty, the only thing we have left to hold onto is the knowledge that through our suffering we are deeply connected to others and their experience of it, too.

Remember this when you see others’ photos of seedlings or their food/dinner on social media and feel irked. Remember this when your toddler won’t go to sleep at bedtime, or starts to tantrum more and more often. Or when your tween or teen is in tears over the fact that they can’t go to a party with their friends or don’t want to finish their homework/attend a Zoom meeting. Remember this when you or your partner’s agitation gets to the point that you feel like you are OVER it and about ready to wave the white flag. Remember this when you continuously wake up feeling under the weather, and debate whether it’s COVID-19 or seasonal allergies, or when you are desperately trying to protect your high risk family members and the fear remains chillingly present throughout the day and night. Remember this when you’re trying to cope with everything simply not feeling right.

Right now, it’s ok to grasp onto whatever grounding you can and to accept others who do as well. Everyone is trying to get through this, everyone is uncomfortable, everyone is sad and everyone is scared. It’s not only ok to be gentle with our friends and family, but also towards ourselves. It is so tempting to think that someone else is doing something wrong in situations like these, but when you truly take in the nature of it all, it becomes apparent that the main thing is just to take care. Breathe in when it feels overwhelming. Imagine that we are all the same, because we are (mother earth and her methods have a way of mirroring this back to us now and again). Then breathe out, because it’s ok to express that energy and to release it (and yourself). I think the most important thing right now is to remember that we are all human, that we have no choice but to sit with each other, and hopefully, to connect.

greta and e at easter 2020

So, 2020 is happening. From what I can tell, our worlds are being ripped wide open and shaken up, and many of us NICU parents are struggling not only with the stresses and anxiety brought with the global pandemic we are facing, but also with past traumas, past quarantines, past depression, and the memories that all of those experiences reopen. It’s because those parts of our mind have been ripped back open and are back in business. The feeling is mutual for anyone who has experienced or is experiencing trauma.

I had been embracing and loving the gift of “normalcy” after my daughter was born. She’s a beast and was born 4x the size of each of her brothers (8 pounds) and has a personality that reminds you of why people that are intense are fun. She has fury and passion. She likes wearing sunnies and playing basketball and following birds and examining artworks. She likes color and she likes interest. She likes wrestling. She shrieks intermittently at the various small animals in our household, and I think she enjoys that kind of language better than words. She’s, so very thankfully, healthy (side note: she loves quarantines.) She loves people. She’s like her brother.

The world decided to dole out another reminder, though, that there are no promises: that “normalcy” is a story we construct that makes us feel better— not a reality— and we should never take our gifts for granted.

"The Eternal Sunshine of the Spotless Mind"?

A documentary discussing an interesting issue was recently brought to my attention. It's about the plasticity of the brain, and talks about the potential for scientists to either place false memories or remove traumatic memories from individual's minds as a way to "heal" from trauma. Pretty science fictiony right? 

It got me to thinking about traumatic memories, particularly those of NICU parents. NICU parents have a unique situation: one in which the trauma that they've been exposed to had to do with witnessing their baby or babies fight for their lives in the hospital-- horrific-- but not necessarily in the same way that witnessing a car accident or physical abuse might be, as our trauma is intertwined with our babies' entrance into the world.  On this topic I was quick to realize that there's no way I would prefer to forget my traumatic memories; not only do they contain critically important details of my sweet boys' lives (and William's passing), but at the same time, the experiences gave me a completely different sense of the world around me. It wasn't necessarily a positive sense, but it felt powerful and important. It most definitely changed the way I perceived things; the way I think. 

Embed from Getty Images

Trauma is essentially the experience of something terrible-- it can be either through our own experience of crisis or through watching someone we care about struggle with something extraordinary. Our brains work hard to make a discrete memory of traumatic circumstances for the evolutionary purpose of being prepared if something along the same lines should happen again. For example, one of my earliest memories is that of grabbing a metal railing to pull myself out of the pool at a swimming lesson-- it was burning hot-- I let go and sunk back into the pool. My mind stored that memory as an extremely important thing as my fear of drowning and the reality of it took over at that moment-- I believe I was only two years old.

Our experience of trauma becomes "disordered" (I hate that descriptor) when elements of our reaction to it continue to affect our lives in a negative way long after the trauma has ended. Many NICU parents have experienced this in ways like hearing a beeping noise that brings you back to the constant alarm of the apnea and other monitors in the NICU and becoming anxious, perhaps even sweating or developing insomnia in response to it. Many times it is our bodies that respond to these triggers; I remember once smelling hand sanitizer that had a similar fragrance to the one at our NICU and becoming physically ill. In fact, many newer theories about the experience of trauma posit that we hold much of these experiences in our physical bodies. It makes sense, as traumatic memories are often stored in a different part of the brain than our autobiographical memories; it is nonverbal, and has much to do with the sensory perception associated with specific memories: the limbic system. 

The neuroscientist Dan Siegel writes much about the notion that the attachment a parent has with their child can be gauged by that parent's own narrative memory and whether it is coherent or not. Additionally most trauma literature within the field of psychology puts forth the notion that in the treatment of trauma, the goal is for the client to develop a cohesive memory that incorporates the traumatic event within it. Siegel talks about how when a parent has gone through a traumatic circumstance, it's essential for them to integrate the memory into their own personal narrative in order to have an optimal attachment with their baby (Siegel, 2001). It reminds me of a conversation I had with a good friend when she was pregnant with her son. I told her that I hoped he would "always be happy". Her response surprised me at the time; she said that "I think it's also important for him to learn about sadness too". The conversation shifted the way that I perceived parenting significantly, and in actually becoming a parent, I realized that her words held even more power and honesty than I had previously thought. To imagine human beings as ideally being two-dimensional super-happy people leaves out a huge piece of the human experience. Without sadness or pain, what would happiness look like? 

So, what of it when we are confronted with the idea that we could forget the NICU and everything that happened there? Everything that at once deconstructed our lives but at the same time brought our children into the world? What would it mean for our attachment with our children that we wouldn't have any information about our most painful experiences, that were innately intertwined with their lives, to share with them? What of the gaps in our narratives? What if instead of "removing" traumatic memories from our conscious/unconscious mind, we instead worked to figure out how to perceive them differently-- perhaps in ways that serve us, our children, our families and friends in moving forward?

What if, instead of holding on to the end goal of "forgetting" trauma, we chose to carry it with us, perhaps in the hope that in communicating what we have been through, we could help others to understand it? 

Siegel, D. (2001). Toward an interpersonal neurobiology of the developing mind: attachment relationships, "mindsight," and neural integration. Infant Mental Health Journal, 22(1-2), 67-94.

If your interest is piqued by this subject, the documentary I referenced here is called "Breakthrough: Decoding the Brain" and on Sunday, November 15, at 9 pm ET it will air on the National Geographic Channel.

The Silent Struggle: Mental Health and the NICU

In becoming parents, we oftentimes accept the silent assumptions that are made by our culture of what that's supposed to look like. An "ideal" parent, for example, seems to live in a blissful state of sacrifice, made happy by the sheer existence of their child, doing their best to take on their responsibilities according to whatever parenting technique may be in vogue at the time (see the book "Our Babies, Ourselves: How Biology and Culture Shape the Way We Parent" for some great writing on this subject).

Cracks in our ability to do that, made visible in mixed company or in the necessary public outings we sometimes have to make, can be harshly judged by strangers and other parents alike, as if our take on parenting is expected to be at top notch regardless of our surroundings or the context. Paradoxically, depending on your audience, different values will be upheld, and surprisingly, people oftentimes feel little need to censor their comments. 

The NICU parent, by virtue of their baby's traumatic entrance to the world, has a unique set of expectations placed upon them, in addition to a unique set of stresses. I remember when my son had terrible colic symptoms after discharge, which caused him to cry for numerous hours a day every day for months, of feeling like I wasn't grateful enough to have him home, that I was taking his health for granted, that I shouldn't feel depressed or anxious because, after all, he was out of the NICU. What else could possibly be as serious as that?  The depression, the haunting memories of the NICU that often flared up over the course of his entire first year-- how could I let those things overshadow the fact that he survived, that he was with me, that at any moment I could hug him? The fact that we were on quarantine to prevent infection, keeping us away from any kind of meetup groups or any kind of regular support from other parents didn't help matters much.  The guilt and shame that had accompanied his NICU stay carried on throughout his first year, in the form of my own expectation for myself that I should be happy and grateful, that struggles with emotional challenges were selfish or pointless. 

The NICU parent has to contend with the very real effects of trauma long after the discharge paperwork for their baby is signed. It's suspected that a staggering number, between 21-23%, of NICU parents have symptoms of PTSD. It's been found that amongst NICU dads, late-onset PTSD is common, cropping up sometimes as long as 6 months after the baby is home from the hospital (as a result, PTSD amongst NICU dads is underreported and difficult to measure). For moms and dads, untreated emotional trauma can wreak havoc on their ability to connect with their child or with each other well into the first few years of their child's life, and sometimes beyond. The very harsh experience of witnessing your child fight for their life can have profound influence on one's emotional health, and too often, no space is made for parents to grieve the experience, to put a name to what they lost, and to integrate that into their lives. Compounding that experience is the fact that NICU parents also have to deal with the very real threat that their child may have disabilities or health issues related to their prematurity or the medical issues that led to their NICU stay. 

As such, the NICU parent is not only held up to the expectation to be blissfully happy with their circumstances (sometimes, as it was in my case, by themselves), but they're contending with very serious, very real issues due to the fact that they were faced with an unpredictable, challenging, and in some ways emotionally devastating circumstance. With an implicit cultural assumption that parenting should be a joyous thing, too often we are silenced, and prevented from speaking to the struggles we may be contending with privately, afraid of the dark shadow that something like "mental health" might cast over our experiences. 

In resisting this silence, it becomes evident how powerful it can be for NICU parents (and parents in general!) to speak to the struggles they've had in parenting after discharge, to give a voice for others who may be too frightened to express it. In honor of Mental Health Awareness week, I'd like to make this a safe space to share your struggles as a parent, where you've gotten to with it, and if there has been any thing that's given you reprieve. Have you connected with other parents yet? How have you healed from your NICU experience? How would you like to see things change for others struggling with the same thing? 

 

How to Find a Therapist

My guest blog at NICU Central posted today; it's about becoming an informed consumer when seeking out clinical help during or after the NICU. So great to collaborate with such an awesome provider and NICU nurse. Check it out for tips in finding a therapeutic collaborator in making sense of the NICU:

The NICU experience; words to describe it. Terrifying, stressful, saddening, maddening, traumatic, disempowering, fearful, unpredictable, scary, mystifying, changing, bizarre lights, jarring sounds, life and death, tubes, new languages, new people, infection, struggle, adjustment, exhaustion, the unknown, the unexpected, lack of time, too much time, stress, fear, fear, fear. Simply using word association to describe the experience brings back the sensation of being in a new place, not knowing the outcome of any minute, of constantly being reminded that nothing is promised and that there's no way of knowing what tomorrow (or even the next hour) might bring. The words fall short of aptly describing the circumstance, but can give a slight sense of just how destabilizing a traumatic birth experience and the subsequent hospitalization of your baby can feel for a NICU parent. I know because I was one... (Read more at NICU Central)

 

After the NICU: What Meaning do You Take with You?

After Elliott was discharged from the NICU and on quarantine, I was left with a lot of time to think. For me, having lost William and spending so many days bedside in the NICU with Elliott, it felt like my entire world had been scrambled into something almost unrecognizable in comparison with what it had looked like even months prior. Transitioning from the "survival" mode of everyday getting to the NICU, making medical decisions, consulting with doctors, nurses and therapists, working towards Elliott's various discharge goals and witnessing Elliott's progress to medical stability was difficult. I had gotten used to the fast-paced nature of the NICU, made friends with his nurses and doctors, become accustomed to the idea that every day could present a new challenge; I even had my favorite places in the hospital to get coffee or take a break from being bedside.

We shifted to a life of being at home on quarantine, adjusting to the day to day, getting used to troubleshooting issues that presented themselves on our own, spending precious alone time with Elliott and starting the process of mourning. All of the events of the past few months started to solidify in my memory, and I started to understand just how this story would profoundly change my life story. But what would that look like? Would this story transform our family into some kind of tragic example of loss? Would we fade away from our friends and family? Was there anything powerful we could take away from it, that, maybe, we wouldn't want to lose, even as painful as the experience was?

When Elliott was about six months old (three adjusted) the peace lily we had put in his room bloomed:

It bloomed in a pairing of two petals, uncommon for peace lilies, which normally  produce one white petal in their flowers.

It was a twin bloom.

When John and I saw it, we were astounded. We felt comforted by it, as if it was some kind of a signal that the earth knew what had happened, that what happened was not to be forgotten. To me, it was also a symbol that despite having gone through that pain, we had somehow been able to move forward. And though it wasn't the way we would have ever chosen to move forward, it had revealed different aspects of ourselves that maybe we hadn't ever noticed before, or seen as a strength. It reminded us that he would always be with us; that our time with him had changed us forever.

Post-traumatic growth is a newer idea in the psychological community. The premise is that after an individual goes through a traumatic or challenging life experience, they then, oftentimes, experience positive psychological changes (Tedeschi, R. & Calhoun, L., 2004). In other words, when you go through an experience in which everything you thought you knew or could rely on is somehow taken away, one oftentimes finds ways of coping with that experience by developing new beliefs or discovering inner resources that before that moment in time were not apparent. Recent articles have shown that, in fact, post-traumatic growth is often more common than the development of PTSD after someone goes through a traumatic experience.

The NICU seems to have the ability to burn away the things that perhaps seemed important in the past, but no longer hold meaning for parents. I don't know a single NICU parent who doesn't understand the very profound value, the gift, of being able to witness your child take a breath unassisted, or swallow without choking, or make eye contact even for a few fleeting moments. Things that for many parents, go (blissfully) without notice.

Oftentimes, for NICU parents, the love that we hold for our children becomes very "operational". In other words, it becomes a very deliberate act of noticing and interacting with our little ones. We go to the NICU, we make decisions and advocate for them, we learn how to participate in their therapies, and accept the problems that present themselves along the way. Love, then, is not just an idea that we have about our relationship, there are actions involved. Prior to having gone through the NICU experience, if you had asked me if I thought I could get through something as challenging, I likely would have told you that I couldn't. That I did get through it in itself is very powerful, and, for me, gave me a sense of just what parts of my sense of self would survive the NICU experience; and it was comforting to discover that it was love that survived it all. It was also awesome to see that my partner had that same sense, and that I could rely on him to carry on on the days that I couldn't.

Despite the pain and anguish of going through an experience that quite literally takes your breath away, perhaps in the survival of that, we find the parts of ourselves that are the most resilient. And I feel gratitude to my boys for having highlighted that for me with their fortitude and grace. Each year, around this time, I get reminded of it when I think to myself about the ways in which I want to move forward in the coming year.

To other NICU parents: what do you DO with the experience of having gone through the hospitalization of your baby? How does your experience make itself known in your day to day life? Have you ever been surprised at how this experience has changed your sense of self or your relationship with your little one(s)? Was there anything of value that you could find in the NICU experience?

References:

Barr, P. (2011). Posttraumatic growth in parents of infants hospitalized in a neonatal intensive care unit. Journal of Loss and Trauma. 16, 117-134.

Spielman, V. & Taubman-Ben-Ari, O. (2009). Parental self-efficacy and stress-related growth in the transition to parenthood: a comparison between parents of pre- and full-term babies. Health and Social Work. 34(3), 201-212.

Taubman-Ben-Ari, O. & Kuint, J. (2010). Personal growth in the wake of stress: the case of mothers of preterm twins. The Journal of Psychology. 144(2), 185-204.

Tedeschi, R. & Calhoun, L. (2004). Posttraumatic growth: conceptual foundations and empirical evidence, Psychological Inquiry. 15(1), 1-18.