So, this head injury situation has become a major event in my life. I’m certain that I will remember this season for many years and for many reasons, even if some of the memories are lost to the ages because of short term memory loss.
Here are a few of my current brain injury lessons learned.
I’ve learned personally how invisible disabilities are so easily dismissed by everyone.
I’m still wrestling with memory issues, pain, dizziness, anomia (a lesser known form of aphasia. Thanks @SB for giving me a name for that symptom). My cognitive ability is a little slower. I need naps and have realized that I actually need to schedule them. I go from flat affect to overly emotional (emotional lability). I’ve definitely got some neurological issues too. It sucks.
But I “look” ok, so expectations of me haven’t changed. That’s been super humbling.
It is clear that my daughter also does not appreciate what I’m currently enduring and that makes me mad, really mad. And if I’m totally honest, I’m like, “Really, after all I’ve done for you and you can’t see that I’m kinda broken right now? Really? Fix your own damn lunch! And if you can’t take care of your hair like you said, I’m NOT taking you to the salon unless you’re paying.” (Ok, that last one does NOT seem unreasonable to me—her stylist is expensive!)
I am presently not exactly emotionally stable.
Also, not my fault but a reality nonetheless. I’m about a month out from the accident. I never cried. My body cried, but I couldn’t produce tears, which made the whole crying thing feel rather unproductive. That all changed this past Monday. I’m not sure if it was just how triggered I was by the events in #Charlottesville this past weekend or if my body just swung to the other side on its own. All I know is that by Monday, I could not stop crying. I said I would telecommute; I didn’t want to disclose that I couldn’t stop crying. My request to telecommute was denied because VIPs would be in the office and I was scheduled to give an hour presentation that I could’ve done online, but whatever. So, I took a washcloth with me to work to absorb the ridiculous number of tears falling from my eyes. I managed to pull myself together and only sob in my car and office. I counted those moments of control as a win that day.
I’ve also been prone to being extraordinarily cranky, and I’m embarrassed to say that last weekend my crankiness fell off a cliff. The typical teen behavior of loathsome laziness and parent blaming for her current life choices sent me right on over the edge of sanity. I raged and then fell into several days of sulking. Frankly I’m still in sulk stage, more because it has allowed me to maintain some kind of leveled out stage. I realize that my behavior could’ve been so much worse, but I began to worry that my injury was really going to be a major setback for me and Hope. I worried that a lengthy period of emotional upheaval for me would possibly mean problems with our attachment and leaving Hope feeling like she had didn’t have true permanence.
Because you know, when I take on drama, I want a whole Broadway show right in my living room. So, a joint session with AbsurdlyHotTherapist is on the books for this week.
That said, I’m still over Hope’s ish.
I’ve learned that I’m an abelist.
In my professional life, I’ve been doing some diversity work on ableism for a couple of years. I am hardly an expert in that area and still have a lot of personal work to do. I remember last year doing some reading and really working on my facilitation of this issue at a few symposia. I took the Harvard Implicit Bias test related to ableism, which revealed that I was way less conscious about my ableism privilege than I would care to admit.
My experiences with Hope’s mental health challenges and diagnoses like ADHD have taught me a lot about ableism these last few years. I’m realizing that despite my best efforts, I’m an ableist and well, I guess I now have some personal experience on what it feels like to be on the receiving end of that.
If you were wondering, it sucks.
I am feeling betrayed by my limitations.
I keep asking how long this post-concussion syndrome will last. My doctor, who has also forbidden my love of brainteaser games so that my brain has time to rest, replied, “The shore looks far away when you’re up to your ass in alligators.”
Yes, he’s Southern and a gentleman of a certain age. 😊
He insists I’ll get there, but it may be as long as 6 months. He simply can’t predict, but if I take it easy and stop doing the most and take it down to doing just a lot, I will likely heal faster. My sister laughed at that, as would my closest of friends who know that taking it easy is not something I’m particularly good at. I’ve gotten better at it since Hope came along, but I’m not good at just sitting down and resting. I never have been.
I’m finding I am avoiding some things because I’m afraid I won’t be able to be 100% me. I got super frustrated when I said sauerkraut instead of sour cream yesterday; not a big deal but I’m wondering is there big stuff I’m switching up and messing up and I just don’t see it or remember it or what?
My boss sat me down this morning to talk about my schedule and how I’m managing with the appointments and such. He gently encouraged me to take some time off or do a reduced schedule for a few weeks.
Now this is all so supportive and wonderful and fortunately, today was not a day that I was sobbing or overreacting to the empathy and compassion.
I finally admitted that I was still keeping a schedule that was too demanding because I hated admitting that I’m not 100%. I didn’t want to feel like I was letting my colleagues down. I didn’t like admitting that this injury is worse than originally thought. I wanted to feel like if I just could power through then none of this accident stuff would matter.
My boss thanked me for giving me that insight and suggested that I take a reduced schedule. (He’s kind of awesome.)
It’s not just shame, which I’ve learned is a nasty emotion, it’s just my own anger about being betrayed by my body—again. Kind of like my infertility emotions, I am struggling with what I can’t do right now. What makes it wose? It’s not even my poor body’s fault. I got hit, I was in a pretty bad accident. I’m hurt. It’s the other guy’s fault. But it doesn’t matter.
This body of mine took the hit, but it didn’t bounce back. It wasn’t supposed to be this bad…but I knew from the moment of impact that it was probably bad.
It makes me think about the fact that I really need to get into better shape.
It reminds me that I’m getting older and am just not able to bounce back as quickly as I used to.
I do not like these revelations; I do not like them, ABM I am.
I leave for a lengthy business trip abroad next week. There will be lots of learning and lots of downtime. My mom is coming with me; initially she as my companion; it was my treat. Now, I’m hoping that she’ll take care of me a bit while we’re there and I don’t have to share her.
Until then, it’s about resting as much as I can. It’s about keeping things calm so I don’t scare or damage my and Hope’s relationship. I’ve got some cool writing gigs coming up, and I’m confident that I can handle those. In fact, I’m feeling better about those more than anything else at the moment. Until then, it’s counseling, the couch and some cupcakes.
August 17th, 2017 at 9:28 pm
I can relate to you here. After surviving the IED tons of things in my life were no longer the same. Huge portions of my memory are gone and my body is wrecked with arthritis, yet because I am physically not disabled people often assume it is fine. It is hard to be patient with yourself but make sure at least that you are practicing some self care. I do hope Mom can “care” for you a bit as it may help you relax some. No Hope cannot get it, it is too frightening because it would mean her rock (you) is not a rock and for her own fragile emotional state she cannot process it and that stinks. Breathe and try to refocus away from what is now a challenge, dwelling on it won’t solve it or help your own emotional state. You got this, sending positive vibes
August 17th, 2017 at 10:39 pm
Every person has problems seeing invisible illnesses, don’t beat yourself up on that part. Know that sleep is when the brain heals, consider it medicine. For what it’s worth, my husband now automatically deciphers what I want, or what I’m trying to say when I use the word ‘thingy’. You’ve got this because you’re a survivor, it also sucks. One good thing that happened to me, all those series that I’d already watched and missed, all the reruns were new episodes to me, funny how the brain knows what can be discarded, what can’t.