This winter, I began to feel like I was hitting an emotional wall. I was unable to identify what the wall was, but I felt it. It was different than the place I’ve existed in the previous days, weeks, months, and now years following Taylor’s accident. I felt darker, sadder, more isolated. All of the emotions associated with Taylor’s brain injury felt heavier than before.
My life as the caregiver and mother of a brain injury survivor is similar to being on a challenging hike. You gather the proper gear—the right shoes, water, a backpack, sunscreen—and feel adequately prepared. You begin the hike with an overcomer’s attitude, looking forward to moving through the miles, knowing at the end you will have accomplished something. Whether it is the satisfaction of finishing, gaining experience, or renewing your mind and body, you anticipate a reward. There are lots of hills, downhill stretches, and the glorious moment when the earth evens out, and you feel your legs again.
When I reflect on the hike of my son’s recovery through brain injury, I recall the first promising moments. The day his eyes fluttered and remained open. The first time he walked, with three people assisting him. And when he put a set of words together that actually made sense. These were moments to celebrate.
There were also many uphill scenarios: the first horrific seizures that shook his body for hours, the rejection of his initial bone flap, when E.coli came to attack his fragile brain, the screams of frustration at being trapped in his mind, the questions that cut deep such as, “Why did you let me live?” And the answers he uttered, “ Because I want to die.” And finally, the endless times of not understanding it all and the countless “what if’s” that haunted my soul.
Of course, there have been many days when the path evened out. We trekked along, not necessarily feeling like we couldn’t continue, but nevertheless, exhausted. Exhausted at the days behind, while trying not to think too much about the days ahead.
The thing about this particular hike is life off the path continues. We have to work, figure out caregiving needs, attend therapies, and make appointments. We research healing foods, navigate issues, like compulsions, seizures, and insomnia. We implement self-care while remaining present for our other loved ones. The outside pressures and trials of life don’t cease.
At some point, without warning, I entered a space where I felt the presence of this invisible wall. Constant questions came. I thought about where we should go from here and realized that there were both not enough and too many choices. I thought about our careers, long-term decisions, and broken dreams. I crunched numbers and got confused between insurance costs and IQ test results. I wrestled with selling our home and moving down the road, or simply running away. All of these mind-ramblings happened while I was supposedly sleeping.
When awake I discovered amidst all the choices, I felt stuck. I had to find a way to prioritize the racing thoughts. I needed to learn to take one day at a time, versus the expectation to map out the next ten years. This was difficult. We are literally living week by week, in some aspects. Caregiving issues have become complicated, and finding quality, consistent care seems impossible.
During the darkest part of this stretch, I attended sessions with Taylor and his neuropsychologist. At the end of each session, the doctor and I spent a few moments alone. He has worked with us before, and a level of trust had been established. I shared how I was feeling, and in time he identified the wall that had built itself around me. This was one of those moments when you know someone is speaking the truth, and you better listen. He said, “Nicole, you are depressed.” With tears running down my cheeks, and a flood of relief I thought, “At least I am not losing my mind.”
We discussed how depression presents. I explained I was eating well, practicing yoga, trying to implement regular self-care. And his response was, “but you still feel crappy inside, which needs to be addressed.”
He asked, “Are you willing to cut yourself a break and consider discussing treating your depression with your physician?” I agreed. He reminded me that being at my best for Taylor meant taking better care of myself. The truth is: at that moment I felt like a failure. One of the deceptions of depression is the guilt it brings to some people—the idea of being a failure, the way your mind turns you against yourself. In the midst of my pain, a friend said, “I wish you could see what we see in you.” I couldn’t. Depression was clouding my judgment and self-perception.
The woman I am today is so different than who I was five years ago. I am braver. I am stronger. But I am also more fragile, angry and frightened. I long for days when there are no hard choices. When I can sit in the sunshine and avoid thinking on hard things. Those days do exist. But I have to create them. No one is going to do that for me.
One of the most challenging things the psychologist encouraged me to do was to focus on myself. He suggested ways for me to stop trying to meet everyone else’s needs and meet my own. He offered simple, obtainable advice.
The most obvious idea was to reach out to my physician, without delay. Another “assignment” was to spend an evening with a girlfriend. Finally, and perhaps the hardest suggestion of all was to let my family know how poorly I was feeling. At first, I only told the outer loop. I sent those who don’t see me often an email. Revealing it to my husband and sons felt more difficult. But in time, I did.
The final assignment was to let go of the lies that my depression was whispering to me. I knew letting them go meant identifying them, so I did this in a safe place. I confronted my feelings and my fears. I said the words, “I feel ashamed.” And whether it makes sense or not, I felt a sense of deep shame.
I needed to completely own the fact that NOTHING I did, thought or spoke in any way contributed to Taylor’s accident. This was not God’s way of teaching me something, and this was not part of the “everything happens for a reason” rationale. Things happen. People fall down the stairs.
I needed to grab myself by the shoulders and remind myself, I am enough. I needed to believe I have been, and continue to be a strong survivor alongside my son. I needed to say the words I would speak to someone I care about, “You are worthy.”
Getting through this phase of my journey is not over. Depression is something I am going to have to work through. I can ignore it or pretend it doesn’t exist. It is part of my path, and like the other parts, I will navigate it with courage and truth.
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Barb Yoder replied on Permalink
Nicole, this is one oof the hardest things I had to do as well! Name my issues out loud, then be released of them, & then move forward day by day & often moment by moment! Great article for all of us! As we each need help to recognize & admit our issues!
Nicole replied on Permalink
Thanks for following my journey, Barb. With love.
Sean Byrne replied on Permalink
Being such a wonderful caregiver, you are probably closest to understanding what us survivors feel. There is a definite “me before” and “me after“.
Real change can only begin by accepting your deficits caused by the brain injury. I went 2 years and 2 months thinking I was gonna get better before I let myself believe and accept that they weren’t. Permanent. A recent fog of depression made me realize that I truly am depressed and need to start addressing that issue
Nicole replied on Permalink
Sean, so glad you mad the choice to address your depression. It is hard, but worth it.