10 - Setback

Hey look!  I've added to my graph from post #3...😣

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I cannot count the number of times I’ve said aloud, or to myself or simply just thought: “I wish someone could just take this away from me.”

Last week, I was talking to one of my friends who I met through the brain injury community. This friend is going through the experience we all dread — while recovering from their first concussion, they have had another head injury. Indeed, this had happened to me during my first concussion. In 2011, I almost recovered from my first concussion in just one week. One week after the initial injury, I was feeling great. So I started rushing through some piles of chores, one of which was putting away kitchen items in the small pantry underneath the staircase. I hit my head on one of the cross beams. This turned my one week recovery into one year.

When setbacks like these happen, I bounce around all the stages of grief, sometimes existing in more than one and transitioning between them quickly from moment to moment: denial, anger, bargaining, depression, acceptance.

Right now I am having a setback. How lovely. I have to lay down a lot during the day. I have headaches and pressure in the head. I experience that foggy feeling — like my senses are delayed a few seconds so I’m not fully experiencing life in realtime. I can’t look at the computer screen (a friend is typing these posts for me). There’s a pit in my stomach, my muscles randomly tense and there’s this low grade constant feeling of being on the verge of tears. 

When the symptoms first started, I was in denial. My life was going so well. I just went on my first long weekend road trip — I took such good care of myself, taking breaks, napping, and wearing my sunglasses more, while still allowing myself to try new things. I came back feeling so great — so “normal”. So I kept up that elevated state of living, like anyone would. When the first symptom of fatigue started to set in, I brushed it off. Fatigue is now a chronic issue for me, so I’ve simply accepted that this happens and I need to rest. And rest I did. I would then wake up feeling okay and then go back to living life again. When the headaches started to set in, I was spending so much time weighing pros and cons, trying to decide if I could still go out and do the things I had previously planned, without too much consequence (you can’t blame me and I can’t blame myself - it’s normal to just want to live life…). 

So much brain energy was lost to bargaining with myself: “How about I allow myself to go to this thing if I rest the next day.” And, “I’m going to just push myself to get through today and tomorrow, and then I’ll really start resting next week. Yeah, that’ll work.” But work it did not. Then the tense muscles, and pain when looking at screens set in. That’s when I accepted that I once again had to withdraw a bit from life. I thought that after acceptance, it would be clear sailing. But, I was wrong again. I do in fact have a lot of practice and tools to deal with these setbacks (I’ve been here so many times before). But that doesn’t change that I’m human. I can feel the anxiety welling up inside me: Is this what the rest of my life is going to be like? Never able to make plans? Commit to a job? Be a stable person others can count on? I fear that slow and endless suffering at the bottom of all layers of hell I’ve come to know on more than one occasion… I’m so angry! I NEED a job. I want to enjoy just one summer; it feels like the 4th one in a row is about to be taken from me. I just started dating someone great! FUCK my inability to be a healthy person in return…

And then, I think of my friend, having recently received their second concussion. And what did I say to them? “This is horrible, but it will end. Stop trying to decide if you can or can’t do things. Give yourself permission to just rest.”

I moved away from home in 2009. In September it will be 9 years. Also in September, I will have had this concussion for 3 1/2 years. Plus the one year recovery in 2011, that’s 4 1/2 years total I’ve spent of my independent adult life dealing with brain injury; that’s half of the time I’ve lived away from home… it feels like a large part of my life lost.

I’ve spent so much time feeling unwell. One of my psychologists once told me I experience a sort of PTSD whenever I feel symptoms. This, of course, is no cakewalk to manage and can make dealing with setbacks even more challenging. Yet, when this happens, another mantra from my psychologist runs through my mind: “Your symptoms aren’t a sign you’re getting worse, they are telling you how to get better.” I wish my brain had a more pleasant way of communicating with me (instead of headaches and anxiety, why can’t I all of a sudden smell lilacs and taste chocolate?? Evolutionary opportunity missed, amiright??)

I realize this post is kind of depressing (I’m presently in that stage of grief) but it’s my truth. I do have moments when I’m motivated, empowered and feeling capable as fuck to get through this. These transcending moments are perhaps more frequent than they would have been 3 years ago.

At the end of the day, no one can take this pain away from me (though, please keep funding research into this area, because one day, there may be!). For now, this is a part of me and as I can’t get rid of it, I’ll have to continue to learn to live with it.

- Krystal