Near Cross Creek, FL (c)2010

Absolutely and of course I am grateful for my family, my husband and children, my birth-extended family, and my husband’s family. Without all the family love and support I am so fortunate to have, I cannot begin to imagine how different my life would be. Then there are friends, those who have touched my life briefly and those who have stayed a lifetime, for which I am thankful.

My daughters took a happiness course in college, and one of the ways to feel happier is to keep a gratefulness journal, each day recording five things you are grateful for. This I did for a brief time on paper, and I still try to make mental note of at least one thing I’m grateful for every day.

But here I want to focus on targets of gratitude in my migraine life:

1) Finally after my 40-year war with migraine, we are seeing the kind of research and studies that have been so desperately needed for so long! And two different migraine-related genes have now been identified, confirming that it is a genetic disease. These are phenomenal developments for people with migraine worldwide.

2) A wonderfully helpful and supportive migraine community is flourishing online with migraine and headache organizations such as the Migraine Research Foundation, the National Headache Society and ACHE, and the National Headache Foundation. Lots of bloggers and health sites like Health Central and WEGO Health provide information and platforms for discussion and support.

3) The fact that I published Migraine Expressions, a longtime dream.

4) And that I made so many fabulous friends and connections in the migraine, headache, and epilepsy communities, mostly via my work on the book, and in the process have loved the literature, poetry, art, photography and even music that has presented itself.

5) Activist groups such as the AHDA and other organizations are beginning to have a serious impact in migraine education, awareness and with members of Congress and the NIH, which can only be beneficial for all.

All of these things I am grateful for, and I hope that progress will continue to be made relatively quickly.

Fred Freitag, D.O., once said to me that he misses in all the migraine expressions any mention of “the benefits that come from having migraine. What was it about the genes that led to migraine providing a role in the selection of mankind as we know it today? [I think an example of this is the theory that early on people with excitable brains were more alert and could warn others of danger.]  Consider the many marvelous traits associated with migraineurs, overall their positive traits far outweigh their negatives. It is matter of harnessing that ‘goodness,’ if you will, to make it work for one rather letting it work against one.”

I think of that — and my wonderful family and friends — whenever I wonder what I might have done or accomplished had I not had migraine disease, then I reflect on what I have and what I have done and enjoyed in my life.

And then I am very grateful, indeed.

Vicki sent a book to Tom Harkin (D-IA), Chairman of the Senate HELP Committee, and I sent a copy to each of my senators, Barbara Boxer and Dianne Feinstein. Seven books are on their way to Congress now!

AND for every book sold in this effort, we will donate $1 to the Alliance for Headache Disorders Advocacy. You can make a dual impact with your purchase.

Anyone can purchase a book for Congress to promote awareness and migraine research here: http://www.wordmetropress.com/congress.html. Simply make a note in the PayPal purchase form which Senator or Representative you would like to receive your book.

Members of the Senate Health, Education, Labor and Pensions (HELP) Committee, which oversees the National Institutes of Health are listed, and members of the Health Committees are indicated with an asterisk. So you can target a committee member or Congress person of your choice.

I’ll display recipients’ names or districts in blue as they’re chosen so we don’t duplicate efforts.

Along with your book we’ll send a letter (See Congress letter page) with your name, address and purpose or if you wish to write your own letter and e-mail it to me, I can include that.

The Momentum for Migraine is building! More articles appear in the media as more public people speak up as migraineurs. Cindy McCain has entered the fray as a migraine advocate, and as Teri Robert has mentioned, the Alliance for Headache Disorders Advocacy (AHDA) is planning another Headache on the Hill event.

It’s a great time to help Congress understand how much migraine has been neglected and how much attention and funding it needs.

Thank you so much for all you do for migraine understanding and advocacy!

Imah Widai

I’m Mad as Hell and What I’m Doing About It…

Yes, we still need painful and frightening migraine art

…and everything else possible to help the migraine awareness effort!

Well, National Headache Awareness Week (June 7-13) is reaching its end, but our efforts to promote awareness and understanding while advocating for more research and better treatments must go on!

Dedicated migraine professionals, advocates and overcomers are leading the charge online with excellent, informative migraine and headache sites, providing support and sharing knowledge and experiences. Some can be found on this blog under Resources and more will be added here soon.

We can stay informed, help ourselves, be advocates and help others in lots of ways! For National Headache Awareness Week, here are a few ideas:

• Read about the National Headache Foundation and National Headache Awareness Week 2009, as well as participate in this year’s ‘Headache U‘ education program and Health Talk webinars still offered several times next week.

• At Health Central’s My Migraine Connection, Teri Robert, forever a fearless advocate, has assembled a tremendous list of migraine articles for National Headache Awareness Week, and you can always find solid information and invaluable support there!

• Megan Oltman at Free My Brain from Migraine Pain offers a free six-part e-course on managing migraines and a wonderful Managing Life with Migraine teleconference series with experts on the last Sunday of each month. I’ve attended one live and to two via audio recordings, and they’re great.

And for next week, and the week after, and the week after that, do whatever you can to inform yourself and others about everything migraine disease. Take time to explore all the other great Web sites and blogs out there. Read about it. Write about it. Draw and paint about it. Shout about it! See if you can help organizations like the NHF, the Migraine Research Foundation, and the Alliance for Headache Disorders Advocacy raise funds or awareness; even if in some way that seems small to you, you can make a difference.

...Which brings me back to awareness and Megan Oltman’s teleconference on April 26 with Michael John Coleman, longtime migraine advocate, fine-art photographer extraordinaire and president and executive director of MAGNUM.

The conversation was interesting and informative and so many useful topics were discussed that I was extremely dismayed by comments from Coleman during a discussion of how migraine art can help people understand: “…we’d rather focus on regular art, look at people like Van Gogh…”  not so much “heads exploding or chain saws coming out of ears.” The gist was that beautiful, symbolic migraine art is preferable and it “doesn’t always have to be frightening stuff.”

Well, I agree that expressions of migraine don’t always have to be brutally honest and painful, but until we have some basic understanding of what migraine disease is and how it impacts more than 30 million people and their families, friends and co-workers in the U.S. as well as 12-15 percent of people in most other countries, we still need the “frightening stuff.” For people who don’t get what migraine is, they aren’t going to get it from a beautiful piece of symbolic artwork, although I believe we need that, too. We need all of it; all the attention we can get.

Until people stop seeing migraine as just a bad headache and not the disease it is where often-debilitating head pain is only one symptom, we need all the straightforward, insightful, beautiful, ugly, twisted, hopeful, and awesome artwork, poems, essays, photographs, songs, letters, books – anything and everything that can possibly help others see and feel what we do.

After 40 years of migraine, I so wish we didn’t need the frightening stuff, but as long as we have comments in the media like this in the LA Times, “…Obama’s plan to give his acceptance speech in an 80,000-seater stadium is turning into a logistical migraine,” or this in the Chicago Beacon News, “Milton Bradley has been added to a lineup that was already dangerous but the bullpen looks like a migraine waiting to percolate…,” we need way more than scary art!

“The bullpen looks like a migraine waiting to percolate…”?!? What is that?! Is that like an epileptic seizure waiting to simmer, a Parkinson’s disease tremor waiting to boil over?

It’s not only because I’ve spent the last two years of my life compiling, publishing and marketing Migraine Expressions that I feel so strongly about this; there are many reasons and foremost are all the comments I’ve received from people with and without migraine disease, who through the honestly stark illustrations of migraine in the book and elsewhere, finally “get it.”

Yes, we still need the brutal, painful and frightening art and writing, and we all need to keep working together for advocacy, we need walks/runs and fundraisers, we need to shout and stomp our feet, to continue legal efforts, support research efforts, and we will need all of this until everyone “gets it” and maybe, just maybe, we will have true understanding, more research, improved treatments, and wow, maybe someday even – dare I say it? – a cure!

Okay, so here’s your challenge:  If you’ve read this far and are the first or fifth person to comment on this post with what you do for migraine awareness,  I’ll send you a free copy of Migraine Expressions to keep, give as a gift, donate to a library, U.S. Senator or Representative, or for any advocacy purpose. (If you’re in Canada or overseas, sadly you will have to pay your own postage.)