Sunday, February 27, 2011

Being Complex

By now, I'm sure most of you have seen the footage of a reporter, Serene Branson, whose speech became garbled nonsense on air. There was initial speculation that she was intoxicated or having a stroke, but no, it was a migraine. I watched this news report, in which she is interviewed about the incident, and I cried.

I cried because of the fear and confusion in her face, as she realizes she can't make the right words come out. And then I cried again, watching her watch the footage. She couldn't hide her embarrassment, and I know exactly how she feels.

I've lost my speech to varying degrees. As an obsessive reader from very early childhood, I've always had an extensive vocabulary, but now it's pretty common for me to mix up words, or forget them.entirely. ("Let's go to the pony. No. The poke. No. The park. Yes. Let's go to the park! Quick, before I forget it again!") I've had a few instances of speaking straight gibberish as Serene did, though, I don't keep talking. As soon as I realize that I can't make the words come out right, I start crying. Wish I wouldn't, but there it is. I've also had quite a few experiences of not being able to talk at all. I just can't organize my thoughts enough to make my mouth work. It's all very disconnected and scary.

If I hadn't already been so suddenly stricken by all of my other migraine symptoms, I would have thought I was having a stroke, too. But since I'd already had experience with surprising and strange neurological things happening to me, with or without head pain, I was semi-prepared for those bizarre symptoms. When I first reported the symptoms to my neurologist, he hardly batted an eyelash and reassured me that I was, indeed, experiencing a rare type of aura. But he did also suggest that I call the office, or 911, if new symptoms crop up, don't just assume anything. And then he told me about the FAST acronym for stroke self-diagnosis, which does make me feel a little better when things go banana-shaped.

If you haven't heard of FAST, let me enlighten you briefly. If you suspect, even a little, that you are having a stroke, check the following::

Face: Smile and look in a mirror (or ask someone nearby). Is your smile crooked? Does one side of your face droop?

Arms: Raise both arms in front of you. Does one arm drift downward?

Speech: Try to say something simple, like what you had for breakfast. Does your speech sound slurred or strange?

ime: If you observe any of these signs, call 9-1-1 immediately.

According to this acronym, my speech symptoms could be indicative of a stroke. But I'm not going to go to the ER every week or so. Instead, I check my face and arms (Heh, I guess my acronym is FAT) to see if either of those are presenting strangely. This strategy, as well as reporting any new or severe symptoms immediately, is doctor and patient approved. And so far, so good.

I've become pretty comfortable with all of these wacky symptoms. They can still upset me, but they don't scare me nearly as much as they used to. Other people, however, don't respond as casually as I do to slurred speech, et al. I get a lot fo side-eyes and adorable questions, like, "Are you on something?"

That, not the symptoms, is really upsetting. When eyes are rolled at me, or impatience in shown, or disbelief, I just want to curl up into a corner and die, or rage out on the closest ignorant jerk. Either/or. I've gotten cozy with my invisible disability, being able to pass as neuro-typical for short periods is very convenient. Outing myself involuntarily makes me feel vulnerable. And I've never been into vulnerability much.

I'm working on that. I can't control other people, only how I much I give a crap about them. But if people like Serene, people who have visibility and a way to spread a message, keep speaking out about their migraines, maybe I won't have to get that thicker skin.

Dear Serene, thanks for talking about your migraines publicly. That was pretty cool. Love, steph


WinnyNinny PooPoo said...

I always had this symptom with migraines, but never as an aura but during the migraine. I did it once during a presentation at work, and just remember the confused faces around me looking at me and the more I said the worse it got.

I have gotten over all the shame and embarrassment over the years. If I cry in public, so be it, if I vomit in front of you, can't help it, if I talk or type incomprehensible garbage, it is just another quirk of being me, if I make a sound like a barking dog and jerk, I may laugh. Based on my own experiences I am sure God has a sense of humor and is a great practical joker. We live on the whoopee cushion of life.

steph said...

I don't know exactly if it's part of the aura. I pretty much call all of my non-pain symptoms aura, which is probably inaccurate, but since I don't have a clear beginning middle, and end to most of my migraines, it's hard to say what different symptoms are attached to, if anything.

You handle your health with such grace and humor, Winny, you are an inspiration. Truly.

Sue said...

Thank you both for helping me to feel less alone and less "odd". The words "just" and "headache" when spoken in the same sentence are enough to make me scream (quietly, if my head hurts).

Serene, and both of you, make Headache (capital H) much more real and serious. As horrible as the experience of such aura/migraine symptoms are, this reporter had the grace to speak publicly about it. I'm so grateful for everyone who raises awareness about chronic pain issues/migraine issues.

Jessica said...

It totally infuriated me when people belittled her for "just" having a migraine! Fucking ignorant people!

My last ER trip, the nurse claimed I had left sided facial drooping along with my other symptoms. Although...I didn't ever look in a mirror to see.

My main speech problem is mid sentence completely forgetting what the heck I was saying! So frustrating!

Off topic...have you ever tried the lollipops made with marijuana? Saw them on an episode of "Weeds". I totally wanna to try them!

steph said...

Jessica, I tried a lollipop at Hempcon, but I'm really much more of a brownies and cookies kind of girl. :)

Sue, me too. I think we need all the voices we can get in our quiet din. Maybe so many whispers will sound more like a roar.