post-concussion syndrome recovery update

This week, I will “graduate” from the Bayside Neuro-Rehabilitation Center where I have been working to address the symptoms brought about by post-concussion syndrome. In June of last year my daughters and I were rear-ended; our car was totaled. My daughters were not physically injured, but I sustained a concussion. I’ve written about it quite a bit, and have been sharing periodic updates about my recovery.

My mother asked me this weekend, after I told her am still unable to do many of the activities I did before the concussion, why am I so happy about the state of my recovery? I said something like this to her:

I’m happy about finishing up at Bayside — the rehabilitation center I would recommend without reservation to anyone with brain injuries! — because: 1) I get 2.5 hours back to use as I wish every week (at the beginning I was at Bayside up to seven hours a week); 2) my improvements since I started there last fall have been steady and measurable and significant; 3) I have learned strategies to deal with the ongoing symptoms, the areas in my life that are still impacted; 4) I have hope (much better than despair!) that I will continue improving until I’m back at 100%. I understand I may never been entirely the same, but who could be unchanged after going through such a massive experience?

I’m also giddy because some of my brain functioning that should be “in the background” has returned into the background. One of the most difficult aspects of healing from this brain injury has been a necessary awareness of how my brain works, and what kinds of thinking are required to function in daily living. On most days, for example, I can not only happily cook dinner for my daughters, I can also listen to my very-verbal nine year old tell me about whatever feels important to her at that moment. This multi-tasking, ability to shift my focus back and forth among different tasks, ability to intuitively know (there’s that background brain work!) something on the stovetop needs stirring and getting the garlic minced should be the next step without having to stop and consider, what comes next? All of these returning skills have been bringing my quality of life (and the quality of life of my daughters!) back to the joyful but busy life we had before the concussion.

Thank you to all of you who have been following my recovery. I’ll likely post about it again as I notice new improvements. For now, I’ll just say that I fully expect I’ll be able to plant, weed, tend, harvest and prepare our garden veggies this summer. I couldn’t do it last summer and that was pretty devastating. Living most days full of gratitude is such a better way to live!

 

 

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“Looking at Black people like you would any other people,” a follow-up post

I want to tell you more, readers who are identify as white. I wrote on Black Girl in Maine’s blog about the awkwardness some of us get when we’re with Black people and I want to write a bit more.

The process of recognizing my own racism has been a long, long process. I want to tell you that when I got to the point, just a few years ago, where I really — and I mean really — recognized just how deep my own biases ran, it was painful and confusing. It played a part in what I can only describe as an identity crisis. Who am I, if I can be this ignorant? Looking back at my life, why did I only know a few people of color beyond the level of polite chit-chat? Why did most of my friends and family, progressives every one, also have only white friends? What did I really, really, really think about Black people?

Examining my racist, biased, terrified truth was a serious mindfuck (pardon me, but words fail when I try to explain this).

I had to float away from myself. I had to wonder who I was, because on a lot of levels, I really didn’t know for a while. I had to see that I thought about Black people as being “one way,” even though on a logical level I knew that was nonsense. I had to see that all people of color were “other” to me, no matter how much I wanted that to be not true. They were they and we (white people) were we.

I didn’t know about their hair, their makeup, their clothes, their language, they they they. As if there was one way. And, at the same time, as if learning about people’s differences was somehow not allowed. (Please keep in mind that I have known on so many levels that valuing differences is a beautiful way to move through the world!)

It was so confusing! It’s still confusing!

Lately I’ve been thinking about representation in tv shows. I was of the belief until just the last year or so that Black people couldn’t play “white roles.” Like, it would be too unbelievable to have a Black actor play a famous white person.

Why? Why did I think that was impossible? There are so many areas where I’m able to suspend my disbelief — how children of gritty British detectives always seem content to play with coloring books while their parent hashes out the details of where the murderer will strike next, for example — why couldn’t I accept an actor’s Black appearance and focus on the character they are playing?

I now believe I could. I’d like to see a lot more Black people playing “white” (as in historical fiction, say a Jane Eyre or something where we’re sure the main characters were white) roles.

I digress. But that’s part of what makes it so confusing. There are so many strands to unravel when it comes to my biases, my part in institutional racism.

What I want to tell you is that it has gotten better. After I crashed into the “holy shit. I *must* be racist in even deeper ways than I realized when I first started realizing it.” When I realized that I didn’t know how to just be normal around people of color; when I realized that I thought of people of color as different (and that meant less valued, less everything), as other; and when I realized that I felt deep, searing pain not seeing the full humanity in my brothers and sisters (oh, do I dare use that phrase? it’s what I mean, it’s how I feel, so I will risk it), I began to be able to let it go.

Using what I’ve learned over the last 7-8 years about Thich Nhat Hanh and Zen Buddhism, expanding my spiritual life in my 12 step recovery program and in my Quaker meeting, and, most recently, tying together my spiritual life and growth with the need for transformation in our racist systems (in great part through the work of Rev. angel Kyodo williams), I’ve experienced inner change. It’s hard to articulate because it’s a living experience. But the “other” feeling about people of color has almost disappeared. I’m not suggesting I don’t slip into it regularly. I do. But I catch myself pretty quickly. I have an authentic sense that we are all one. We don’t exist without each other. I have been released from a great deal of pain and confusion related to my own racism and biases and history.

So, it’s been my experience that really, really facing my own crap has been really, really difficult. But it’s also been my experience that it is getting better than I ever thought it could. It requires daily efforts on my part, but it’s really, really worth it.

post-concussion syndrome setback and lessons learned

I thought I was “done.” I even told people I felt like I was pretty much back to my old self again. I started volunteering for things again, started writing more, and was cooking dinner almost every night. Life was good!

But, over time I stopped paying attention to what my body was telling me. I didn’t notice the headaches. I knew I was tired, but I “pushed through.” I didn’t realize that my post-concussion syndrome symptoms could come back with such force. (Note to the reader: my alarm reminding me to take a rest just popped up on my computer, I snoozed it for five minutes. If it pops up again, I’ll finish this post later!)

Last week, after a bad night of sleep, I crashed. Suddenly, it seemed, though hindsight says it crept up on me, I couldn’t think straight. As it was right after the crash, thoughts would come into my head but they’d slip away before I could know what they were. I couldn’t figure out what the right order of steps were to prepare dinner. Listening to the radio in the car made it difficult to drive. My brain was much too loud, my eyes weren’t focusing well, and I was beyond exhausted.

It’s been a week and I didn’t do a terrific job returning to an awareness of my symptoms. In the last couple days, though, I took more breaks and noticed when my mind was particularly slippery or foggy. I’ve had a lot of work to do, and a lot of it required high level intellectual thinking, but I did it bit by bit rather than in one massive dive.

Today I feel a lot better. I finished an essay I’d been working on. I’m about to make dinner and the prospect doesn’t feel overwhelming.

It was a rude awakening, though. I’m not as “done” as I thought I was. My speech therapist said she feels confident I’ll get to a point where it doesn’t get *this* bad anymore. I keep focusing on the fact that it’s been months since [pause to take that five minute break, thank you computer reminder system] I had symptoms that couldn’t be resolved by just a few minutes of resting my brain and eyes. I’ve been “back up to speed” in most areas of my life.

As with the rest of the post-concussion syndrome recovery, I’m reminded that my life improves when I take it easy. When I pace myself and don’t overdo it, even without the brain problems caused by post-concussion syndrome, life is better. I’m more present in life and I’m able to enjoy it. So now, after hitting “publish,” being present in my offline life is what I’m going to do.

post-concussion syndrome recovery update

I’m feeling especially frustrated right now. See, I love going to New York City. One of my favorite things in the world is to walk around Manhattan without a plan, go to a museum or two, and wander.

I’ve been feeling significantly better lately. I can cook dinner even when my eight year old wants to talk to me. My 14 year old can listen to music on the radio while I’m driving. These are big deal improvements.

But as I plan a trip to the city, I realize I still need to restrict my activities because of the concussion recovery. It’s so frustrating.

Scanning with my eyes is still very tiring. Multi-tasking is still not second nature like it was before. Something that before would have been simple, like taking a bus from my uncle’s place into the city, feels daunting. I could do it, but it would be difficult and very tiring. Maybe it would be worth it? Or maybe I’d be better off waiting until I’ve gotten even farther along in my recovery.

The crash happened in June. It’s been a long time. I thought I might be done by now. As I said, I’m much better. But I still don’t have my life back. It’s tempting to focus on how powerless I am here (I can’t speed up the recovery), but the occupational/physical/speech therapists all helped me (and still help me) remember that I’m much better than I was before.

I’ve started a new activity in speech therapy that is focused on building multitasking skills. I tried it on Wednesday and it felt like I was lifting weights with my brain. I have high hopes that this tool will help a lot.

I’ll keep my trip to NY really simple. I’m grateful I feel up to traveling at all.

hostile, misogynistic everyday life

I know a lot of good men who, despite their best efforts, don’t really understand what it’s like to be a woman when it comes to personal safety. And, while I generally move through life assuming the best of people, in most respects, I also know (based on life experience) I need to be on guard when it comes to men.

On twitter today I experienced a solid example of how the littlest things can turn upsetting when it comes to interacting with men. It’s also an example of an exchange that could have many other explanations that don’t include the potential for violence. Therefore, it’s a good example of the kinds of everyday interactions women face all the time, at every turn, where we need to make the calculation, if I respond this way, will they get angry (which, offline, could lead to violence) enough that it will be scary? or, if I respond this other way, will it be worse?

Here are the series of exchanges.

This man followed me on twitter a while ago. I followed him back for a while, even though it seemed from his tweets we probably didn’t have a lot in common. I enjoy interacting with people who have different points of view.

Our interactions were cordial, even kind.

Should I “heart” the tweet, indicating I saw it? Sure. I think I even replied with a thank you, or something like that.

Then, a few days ago, there was this exchange:

The “fishnetspreferred” hashtag made me uncomfortable. But, y’know, it’s twitter, the wide-open Internet and we’re all adults here. At this point I start weighing my potential responses, if I don’t “heart” the tweet, will he take it badly? (too many men would.) If I heart it will that only encourage him to move farther along in that direction? In my experience that’d be pretty likely, so, no, I decided not to heart the tweet. I also decided to stop following him, taking the chance of sending a quiet message that, no, I didn’t like the tweet.

I didn’t spend many minutes on this decision, but I did have to think about it and decide which of the possible outcomes would be least annoying (or, in the worst case scenario, least scary or unsafe).

That shouldn’t be a big deal, right? So, his joke kinda fell flat because I didn’t heart it, who really cares? (I also thought, maybe he’ll just think I never saw it and it really won’t be an issue, or maybe, if I’m really lucky, he just won’t care…)

Then, today, I got another tweet from him. I want to say in advance that I’m fully aware the change in tone could be entirely unrelated to my not hearting his “flirtatious” (?) tweet. But I also want to say that it has been this 48 year old woman’s experience that men can get hostile really quickly when their advances are rebuffed. So, take this next tweet as you will:

If he hadn’t had that hostile first line, I think it could have been an interesting discussion. But, no, the hostility and misogyny of the tweet was clear.  I tweeted two responses. One, that I never called her stupid. And, two, that I was going to block him because his anger made me feel unsafe.

I’ll say again that I recognize there are all kinds of ways of reading this series of exchanges. But, in my experience (and that counts beyond just something “anecdotal” because I know I’m not alone in my experiences), this kind of escalation into hostility is typical if I don’t smile or laugh along with jokes that make me uncomfortable. (And if I smile or laugh, they’ll continue and get worse.)

I’m sharing this in the hopes that some men I know might continue learning how tricky it is being a woman out there in the world. If we women dare not smile and “encourage,” we end up being called “an unholy, judgmental snatch” (the choice of language for his insult is another indication about his lack of respect for women).