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Staying out of the Spotlight

July 22nd, 2009

It’s very uncomfortable to suddenly have one’s vulnerabilities become center stage. I had an odd experience this week. I haven’t met many Migraineurs yet who actually want their illness to be center stage. We want to be understood, we want support and empathy and help where we need it, but not generally to be fussed over and be the center of attention because of our disease. At least, that’s my impression of the many many Migraineurs I have met! Do you agree?

A few nights ago I had a parents’ meeting to attend for a program my kids are involved in.  I’m currently on vacation in a conference center, and the space found for the parents’ meeting was the stage of the auditorium, where they had set up a circle of chairs and turned on all the stage lights.  I stepped onto the stage and in every direction there was a spotlight pointed straight into my eyes. I edged my way around for a bit, trying to find some safe angle, but the lights were just everywhere. As often happens in the face of a trigger like that, I got disoriented. I couldn’t figure out whether to stay or go. I can’t imagine what I must have looked like, staggering around the stage. My husband was there and he kind of guided me to a chair, and sat on the floor in front of me.  I bent my head down onto his back, threw the hood of my sweatshirt over my head and eyes and asked if they could turn the lights down. Someone said they were trying to dim the lights.

Now at this point my face was hidden in my husband’s back, I felt dizzy and disoriented, and I didn’t know if my voice was loud or muffled.  I was worrying about how strange I looked. The woman next to me said something sympathetic and handed me a booklet to further shade my eyes. I thanked her and said, “I’m sorry to seem so dramatic, but those lights will trigger me into a Migraine in no time flat.”

Apparently it wasn’t easy to dim the lights because the meeting started with them still on. My kind neighbor called out, “turn out those lights, we have someone with Migraine problems here!” Several people made suggestions about where else I should sit, and I answered, without picking up my head, “No, then the lights from over there are in my eyes.” My voice sounded whiny and desperate to me.  So, they turned out the lights.

This story is not about other people not understanding. I don’t know whether the people in that meeting understood or not. Whether they understoood or not, they were very caring and responsive. The whole meeting sat in the dusk so that I would not have lights in my eyes. This story is about how mortified I felt to have my vulnerability, my weakness, my Achilles heel, my Kryptonite, right up there, center stage, under the spotlights, for everyone to see.

I worried what everyone thought. Did they think I was being dramatic? Were some of the other people there sitting in judgment, annoyed at sitting in the dark, wishing I would just go away? Did I sound as whiny to others as I felt to myself?

Interestingly, I had a chance to talk about the meeting with one of the other parents the next day (it was a very good meeting, by the way), and I made some comment about having made everyone sit in the dark. She looked confused, and then said, “Oh, was it you with the hood over your head?” So obviously, I was not remembered for that! I guess I won’t go down in history here as the drama queen who made them sit in the dark because I SAID the lights would give me a Migraine!

But tell me, why is it so hard to let people see I am less than perfect?

- Megan

Tags: migraine, Migraine triggers, spotlights, vulnerability
Posted in Communicating, Musings | Comments (8)

8 Responses to “Staying out of the Spotlight”

1. Deb Says:
   July 22nd, 2009 at 10:55 pm

   Maybe it’s not a matter of letting people see you’re less than perfect, maybe it’s a matter of worrying about putting people out, ie, making somone find and turn off the lights. Just a thought. Still puts you in the spotlight, though.

2. Jasmine Says:
   July 22nd, 2009 at 11:59 pm

   I’m sure you would have done the same if someone else was going through the same. And I’m not just saying that because you’re a Migraineur.

   I’m so happy to hear how strangers responded to your needs.

3. Parin of Sparkling With Crystals Says:
   July 23rd, 2009 at 12:36 am

   If this had happened to one of your clients, what would you say to him or her?

   I’ll bet you’d be so supportive and caring! You’d ponder for a day or two, then you’d have a plan to give your client that would show, once again, you’re in the right business. People like you, and me, can be very hard on ourselves on behalf of others who need us to be strong for them. Having a sudden need ourselves is just like you said–disorienting.

   So, maybe treat yourself like a client? And give yourself a hug from me. You’re brave to share this with us.

4. admin Says:
   July 23rd, 2009 at 8:20 am

   Thanks everyone! I knew you all would understand!

   Deb you have a good point. I just want to be one of the group, participating, and I don’t want myself or anyone else to put out by my disability!

   Jasmine it’s funny how hard it can be to just graciously accept help that is graciously given, and be as generous with myself as I would be with someone else!

   Parin you remind me that I can’t help anyone by pretending to be perfect - I can help other Migraineurs because I’ve been there - hey I am there!

   Hugs, Megan

5. Karen Says:
   July 23rd, 2009 at 12:51 pm

   Your first web page did look like you are in complete control and I thought this person doesn’t get real migraines until I read your blog! Ouch, I felt your pain and panic. Here’s my tip for future. I have a big pair of “Hollywood” prescription sunglasses. A good eye glass fitter was kind enough to show me what to look for when I said I want to block light. These glasses touch my forhead, cheek and have wide side piece that block that angle. I don’t take them off until I assess a new situation and sometimes leave them on indoors! The other night at 9:30pm I was at a baseball game and the lights were brighter than sun! My sister said “it’s dark out, aren’t you going to take off you sunglasses” and I said “no way!” They are my salvation and they don’t leave my side!

6. admin Says:
   July 23rd, 2009 at 1:38 pm

   Thanks Karen - Anyone who knows me can tell you I am far from in complete control and my Migraines are as real as the next gal’s, though I have learned a lot about managing them and I try to share that. Thanks for the tip, I do have prescription sunglasses, much like you describe, but never occurred to me to wear them inside like that - live & learn!

7. Hua Says:
   July 27th, 2009 at 6:45 pm

   Hi Megan,

   Great post. Don’t worry about what others are thinking. This is your life, not theirs. Don’t be embarrassed to be center stage, that is your moment.

   Best,
   Hua

8. MaxJerz Says:
   August 11th, 2009 at 1:21 pm

   I had to learn to let go of what I thought others might be thinking of me, because I wear a hat and sunglasses out in public so much - yes, even here in the rainy Pacific NW!

   I don’t consider myself someone who cares about what others think, but some nights when I ride the bus home from work, sitting up front in the disabled seating and wearing my hat and big sunglasses, I wonder what people think when they see me. Then I wonder, why should I care? If I don’t want to trigger an instant Migraine, I have to wear them.

   It is very difficult to ask for accommodations in a one-on-one situation, let alone one person speaking out against the group. I’m glad that you did, Megs, and I think I would have been similarly embarrassed in your situation.

   Be well,
   MJ

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