On the phone to my friend, Cindy, voice quivering, occasionally leaking tears, at one point sobbing, I hoped for some answers. What was going on? Why was I so upset?
When I noticed that over the last couple of weeks I occasionally became weepy for no apparent reason, I thought that hormones, or exhaustion induced issues with sensory overload, were the culprits.
But today’s meltdown felt different. This was far too extreme to fit the label “sensory overload.” In fact, there had been no high volumes of sensory input to trigger such a reaction..
Except that the previous day, I had suffered a severe bout of sensory overload. It took me by surprise. Though I’d just left a crowded event, I was reacting far too strongly than I would have expected. Also, the event wasn’t all that crowded—I should have experienced little to no difficulties.
During my first few years of recovery, balance issues and tears were the first noticeable signs of having trouble processing high volumes of sensory input. And the tears were always followed by a full blown meltdown. Fatigue tended to make me more vulnerable to sensory input
In time, as I recovered from my brain injury and fatigue became less than an issue, the symptoms of overload, became less obvious, a momentary clumsiness, a fleeting hint of dampness in my eyes. What was yesterday’s episode about? I didn’t think my recent levels of fatigue were any worse than any I had experience over the past few years.
And today, this inexplicable bout of crying… Was it related to yesterday’s difficulties? In the past, during the first few years into recovery, sensory overload was followed by a couple of days of emotional fragility. But that hadn’t really happened in several years.
Was depression the cause? That didn’t feel quite right either. And there was no horrendous headache, the harbinger of another brain bleed. So what was going on?
Cindy, suggested it was grief, but that didn’t sound right. Over the last few years my grief over losses incurred by the bloody brain only emerged rarely, and lasted no more than a few minutes. I was well on my way to acceptance, to the point that recently I started questioning my past insistence that acceptance is a journey, like Buddhist say of happiness.
Shortly after the brain surgeries, it made sense that I was grieving. Back then, I poo-pooed assurances that eventually I would accept my new normal. I equated acceptance with defeat. I could not, would not, live the life of an invalid. I was no malingerer.
My neuropsychologist offered another view of acceptance, that it was about learning to live with brain injury, rather than beinge afraid to live. His explanation sat well with me. Yet the use of the word “acceptance” still bothered me.
As I healed and learned to live with my brain injury, the term grew on me. I became able to accept the term. But I insisted that acceptance was a journey rather than a destination. I was sure that though I was definitely headed that way, I would never actually reach acceptance. But recently, I started believing it was within reach, that I would achieve acceptance soon, that perhaps I had actually arrived.
I asked Cindy, “But why would I be grieving now? What has changed?”
She answered without hesitation, “There’s your sister, and listening to your audio book...” and it all clicked. She was right, I was grieving, in a big way, and for good reason.
My younger sister also has cavernous angiomas scattered in her brain (Yes, it is a hereditary disease.) She also suffered brain bleeds. And few weeks ago, she underwent brain surgery to prevent future bleeds.
I visited her a couple of weeks ago to provide her with much needed emotional support and found myself confronting my own memories of the nightmare that used to be my life. In addition, over the last few days, I’ve been listening to the audio version of my memoir of recovery from my brain surgery (But My Brain Had Other Ideas).
Of course I was grieving.
This also explained the previous day’s case of severe overload—whenever I was emotionally fragile, I was also vulnerable to other stimuli. Overload is not caused just by high volumes of sensory input, but also by high volumes of any type of input, emotional, cognitive, and, of course, fatigue.
I lamented to Cindy, “Will there always be grief?” even though I knew the answer. My emotional reaction was akin to the grief experienced in the wake of the death of a loved one. And grief never disappears, it just becomes more bearable in time, resurfacing less frequently. You merely learn to live with it.
So no, I have not attained acceptance. I never will. Acceptance is a journey not a destination.
Though I am well on my way.