If You Fall Seven Times

[bryan farley]

 

... stand up eight.

 

Today is the anniversary of my first seizure. Twenty-seven years ago, I fell during a high school debate tournament. I hit my head on a desk before crashing into the floor. Eventually, I got up. I think. Because I was disoriented, I did not realize that people have been helping me all this time. I was never alone. I have never stood up by myself.

 

In the years following, I fell often. Sometimes I fell after having the "big bad" seizures. Sometimes I fell after having small jerky movements that came while running. I do not even know if I would say I always stood up after some seizures. I learned how to bounce off the asphalt into running position with bloody knees and arms. I pretend that I do not like to jog now. Mostly, I do not like having my body picked up and thrown onto the ground. 

 

Many of you have heard the Japanese Proverb about falling seven times and wondered how it applied to those of us with epilepsy. If I fall seven times, why stand up eight? Let's not make this more complicated than necessary. If I fall seven times, I am only getting up seven times. But like the rest of us, I have fallen more than seven times. 

 

On the twenty-fifth anniversary of my first seizure,  I shared my evolving epilepsy experience. The day, which had long been a traumatic reminder, is now the beginning of a new year. I am just one person who has learned how to share their experiences. There are also a number of outlets around the world for people to express themselves. We have a community.

 

The Epilepsy Foundation provides this forum and other publications so that we can read about people such as Denise Pease and others who have succeeded in the African American community.

 

We can find our voice in blogs and the comment section. It was in a comment to my last blog post that Jamie Weiss posted one of the best criticisms against the latest movie Trailer Heist when she wrote, "Spastic, weird, funny looking, crazy, scary, ugly, mean, stupid…that’s the implicit message children with epilepsy hear when seizures are used as comedy. They believe the world is laughing at them." 

 

Young adults have also created their own blogs. Mandy Krzywonski has collected "first seizure stories and epilepsy authors. Mandy is just 18 and I can hear her shouting from San Antonio. When I was 18, my silence was horrifying.

 

Jessica Keenan Smith is a star. She has recently began advocating about having epilepsy with the same tools she developed to market and promote other causes. Jessica has an epilepsy blogger directory that she updates often. Some of the bloggers you may recognize, such as Mandy, or Alysse Mengason. Other blogs are from Mexico, such as "epilepsia: La Vida De Un epilepico Dia A Dia." If you notice a blog that should be on the list, contact Jessica. Follow her on Twitter and Facebook too.

 

If you do not know Twitter, Facebook or Google+, you are probably not from the UK. Somehow, even though many social media companies are located within 50 miles of my Bay Area home, people from other countries seem to utilize social media more for epilepsy advocacy. One great example is Epilepsy Action in the UK. Check out the Epilepsy Action Forum, and if nothing else, follow them on Twitter.

 

The International Bureau for Epilepsy provides a list of epilepsy and health organizations throughout the world. This list is another reminder that when we fall, we do not fall alone.

 

Those of us who are lucky, fall and get back up. Some of us leave behind friends who continue telling our story. The Anita Kaufmann Foundation uses cupcakes. Purple Cupcakes. The Anita Kaufmann Foundation supports Purple Day every March 26th for all of us. Cassidy Megan, a little girl with epilepsy, started Purple Day in 2008. Cassidy believed that our community could make this happen. She probably believes that we can support each other too. Now that I know the origin of Purple Day, I will not let her down.

 

The epilepsy community finds other ways to connect. Nathan Jones produced a short film, "A Seizure." Susan Noble maintains an active site with more than one thousand Facebook friends. Actor Greg Grunberg created a non-profit where people can Talk About it  by posting videos, photos and blogs. At the Talk About It site, I especially like reading Alastair Millen's posts.

 

There are so many websites and publications that our community can feel disconnected and discouraged. The tools are not perfect either. Yet, we still find ways to tell our story. When I was younger, I chose silence hoping that I would not trip and reveal my secret. As I get older, I treasure the inevitable missteps and rough days. I know that I will recover, because I always get better. I might fall, but I always get up. Up. Down. Up. Down. Up. Down.

 

Who helps you when you fall?

[bryan farley]

Thanks Jeffrey.

 

Being active has helped my emotional and physical health. When I hear that I help others, I am also fortified.

[bryan farley]

@Mary Lou,

 

Thank you! I keep finding my voice, often when I least expect to find it.

 

Reading your blog about parenting has helped me to learn more about my relationship with my parents and that has also helped me find my voice. Thanks.

[Mary Lou Connolly]

Wonderful, informative post Bryan. I'm glad you found your voice!

[bryan farley]

@kerri,

 

one more thing, I did not mention Terry Tracey's book in my post, because I figured someone would mention her book or I would mention it in a post, but if you are writing a book, you might contact her. I read her book and was impressed with the project. I spend hours composing one blog post. Writing a book takes ... I don't know. Worth reading, and I have enjoyed communicating with her.

[bryan farley]

@kerri,

 

Thanks for reading and posting. Each time I see that someone posts, I am motivated to keep writing. 

 

Writing is not easy for me, even when I know what to say. I have heard that others have difficulty expressing themselves sometimes too... not just from fear, but from unraveling the complexity.

 

Thanks for the encouragement and compliments.

[Kerri Croake]

pretty kick ass, bryan.  i can tell you spent a lot of time on this post and that is what makes it speak so loudly to all of us.  good job & keep 'em coming!

I am way behind on my blog and you have inspired me to both blog and finish my book.

good job!

kerri

[EpilepsyBlogger (Mandy)]

Good luck to you, Maseena and God bless. I wish you the best of health and I will enjoy seeing more videos. Thank you Bryan and Jessica, you are both so awesome!

[Maseena Manley]

I Will be posting more videos. Unfortunately, i have had to be in the hospital due to some seizures. So the page is running behind.

[bryan farley]

Glad that I can share so many links. I have enjoyed the responses here, on Twitter, and my Inbox. There are so many other people support us, that I could create a few more posts with new links, and I will definitely have more to write about in the future.

 

please keep adding names. I am going to check out Maseena Manley's site now.

[jessicaksmith72]

Bryan,

As always, thank you for such wonderful friendship and support. And I agree, Mandy's voice can be heard around the world. Keep it up.

Best to all,

Jessica K. Smith

Founder

Living Well With Epilepsy