I sit on the couch in my living room and look out over the snowy fields behind my home. It is a day like any other. Suddenly, I take an involuntary quick deep breath, let it out… and my world has changed. I see a little more, the world feels brighter and more “here”, a new layer of awareness is active in my mind. I can think more clearly, more deeply. I feel closer to whole.
I call this particular sensation “Waking Up”, because that is what it feels like. It is like I was sleeping and didn’t realize it, and I suddenly wake to my life. It is a very unusual sensation, not something I had ever experienced before my brain injury. Now, it is part of my routine.
When I do too much – which I do each week with 32 hours at work – my “self” is diminished. Parts of me fall away as I fatigue. I slowly devolve from a relatively competent, present, and stable individual into someone who is just holding on, surviving but not living. My higher reasoning skills leave first, followed by my emotional stability, and finally my desire to do anything but sleep or stare. My mind is dull. My world is small. My coping skills are non-existent.
This happens every week. Every single frikkin week. If I rest appropriately the weekend before, I start Monday feeling pretty good, pretty much myself. By Wednesday I’m feeling the strain and my best mental energy is gone, but I still hope to make it through the week. By Thursday my outlook on the world has tanked. Whether I will it or not, my belief in the validity of my relationship, my work, my choices, my existence is gone and I feel lost and overwhelmed and confused and hopeless. Friday I somehow make it through as a body, merely holding space in this world, waiting desperately for the weekend so I can recover and relax. The weekend finally arrives, and I do nothing but rest. Maybe I talk with a friend or go food shopping, but the entire time I am waiting to wake up, to feel whole and present and alive. Waiting and hoping to be myself, again, for a brief period of time.
My recovery time has changed since reinjuring my head about a month ago. Instead of recovering early in the weekend – say by Saturday afternoon – now it takes the whole weekend of rest to set me right.
Or it had been taking that long.
This weekend, I was so excited about my Saturday afternoon plans. A dear woman who I hadn’t seen in several years was going to stop by. I rested Friday night and even went to bed at a proper time. I rested all of Saturday morning, and the early afternoon. I wanted to be at my best – my most functional – when my guest arrived.
But here’s the thing. I had set my expectations based on how quickly I recovered before my re-injury – how it would have been two months ago – not how it is now. Needless to say, I was not in top form by Saturday afternoon. I was mostly able to follow our conversation, so yay for that. My emotional equanimity had not yet returned, however. When my friend asked me about my life, work, relationship, hobbies, friends just about every time I tried to talk I was quickly overcome with tears. Words wouldn’t come out, only tears. Yes, some sad things are going on in my life and I feel frustrated and overwhelmed and lonely… but it isn’t all bad, and I had plenty to share. Instead of being able to articulate myself as I desired, though, I kept tearing up and subsequently redirecting our conversation. The tears came simply because I was tired to my core from my week of work. Damn.
So what about the rest of the weekend? I patiently waited through Saturday night for a return to my sense of self, but all I felt was hopeless, dull and tired. Sunday came and went with me having several meltdowns about how horrible and scary my life options were. I did have one layer of waking up Sunday night, but I still had many more to go to reach my current “normal”. Monday morning, I woke feeling emotionally stable again, but still mentally dull and stunted. As I write this Monday evening, I am still not back. Thankfully I had this extra day off work, a federal holiday, or there would have been no chance to enjoy my wholeness before losing it again for the week.
I am scared. It is taking me longer to recover each weekend, and I am not recovering as fully. And really, it’s not like I was satisfied with my most awake/competent self since my original injury – I still have so far to go in healing when I’m at my current best. My inability to communicate with my friend this weekend really opened my eyes. So did – ironically – rereading my post 10 Things I Wish My Doctor Had Told Me About Mild Traumatic Brain Injury (mTBI). Specifically, the first point on my list:
1. You can’t push through. Regardless of how strong or tough or determined you are, you can’t bully you’re way through recovering from an mTBI. I know you’re going to try, but you will save us both a lot of time if you didn’t.
That is what I am trying to do, what I have been doing. Pushing through like somehow I’ll be able to make myself meet others’ expectations. Heck, I guess I have been trying to push through this injury, in some form or another, since I was injured. That didn’t really register until right about now. All I saw was the immediate goal of keeping my job so I can be economically stable. But I have been acting contrary to my own advice. I can’t push through this thing. No matter how strong I am, or how much I try, I can’t bully my way through recovering from this mTBI.
Things are different now, especially since my second head injury. What is another path I could follow? Maybe I could treat myself and my body with respect, instead of like a machine that I can repeatedly push to it’s limit. How can I expect my mind to recover while being overextended indefinitely? It is illogical to believe that there won’t be an underlying, long-term price for abusing my brain this way – an eventual reckoning. Actually, maybe that reckoning is starting to make itself known now.
What to do? Well, I have asked for a referral to see a neurologist at Dartmouth-Hitchcock and get a new perspective on mTBI management. The medical services I have accessed in my area have only taken me so far. Maybe Dartmouth can send me in a better direction. Most likely, the doctors will tell me to work less… probably much less. Working less means I will use up my FMLA more quickly. If my FMLA runs out and I am not yet able to work 40 hours a week… well… that means I stand a significant chance of losing my job. But maybe on some level it doesn’t matter. Would I rather have this particular job (and the financial comfort it provides) or would I rather fully recover from my brain injury and no longer live this endless destructive cycle of overextending myself and waking up? I want to heal. I really really do. I want to become fully myself again, whoever this new self turns out to be.
I need to take care of myself, give myself enough time and space to heal. How will I pay my mortgage and food expenses in the meantime? Well, it will be okay for a while, as long as I keep working. If that possibility dries up… I really have no idea how I’ll support myself. And. I must move forward, improving my choices as my perspective evolves. Who knows what the future will hold? Likely, I will look back and marvel that it took me this long to prioritize my healing.