Becoming your own advocate

I am an introvert. If you want to know what that is you can get this book or watch this video by the author.

Dealing with LTFA has been hard medically and emotionally, but the hardest challenge of all was developing the confidence to be my own advocate. It would be too complicated or too personal to go through the how I managed to get here, frankly I’m grateful and blessed to be alive. So instead I’m instead going to tell you the story of someone who truly inspires me. Someone who in 29 months has dealt with more challenges than I dealt with in 29 years. There is one catch however, the story I’m going to tell you is about one of the world biggest extroverts. His story is already public, his name is Sean Maloney and I’m honored to call him my friend.

Sean Maloney was destined to be the next CEO of Intel corporation. You can google and read all about him, or watch this video:

That video was just one year after his stroke at age 54, at which time he was the epitome of physical fitness.

The circumstances by which we met were unusual, this has never happened before, you see, my wife was and still is Sean’s speech therapist. She worked with him for over three years every week and now, in OIT lingo, is doing ‘maintenance’.  She will be the first to say that she didn’t bring back Sean’s speech, it was Sean who did it himself, she was just his guide. Sean has described the many ways that his speech has come back. Those that have worked with him may agree or even disagree with some of his explanations, but who cares? Whatever the explanation of how he came back, Sean is doing more now and touching more lives than he ever could have if he stayed at Intel.

You can see Sean’s own story recorded 3 years post stroke.

Now, five years after his stroke Sean is taking on a monumental task of riding his bicycle across America to ADVOCATE for his cause.  What’s Sean’s #1 rule?

Don’t have a stroke in the first place.

So how are you supposed to not have a stroke in the first place? The answer is not the subject of this piece, but the difference between a stroke and anaphylaxis is like night and day.  Stroke is an injury, whereas anaphylaxis is really just a group of symptoms, granted, potentially deadly symptoms, but something that is treatable and fully recoverable from.

Stroke on the other hand is damage to the brain. Even if it’s just a little damage, it’s still permanent and you never get it back to the way it was originally.  Sean’s recovery is based on his ability to compensate for or work around the deficits. But the deficits are still there, and will always be there, hence Sean’s #1 rule is now perfectly clear:

Don’t have a stoke in the first place.

If you are lucky enough to be on the route that Sean is riding across America for the next 6 weeks then you should go see him and you will be inspired. You will be inspired to fight for change in the way the medical industry is responding to the emerging epidemic of Life Threatening Food Allergies for both treatment and a cure. You will be inspired to ask the question “Why is this happening?”. Maybe you’ll be inspired to advocate for your child, or maybe to identify and stand up against bullying. But what I want is to recognize the importance of teaching children to ADVOCATE for their own health and their own lives, especially if they fit into the 40% of the population which consider themselves more introverted than extroverted like I am.

Epilogue

Sean is neither the first nor my greatest inspiration. Everything I learned about advocacy, persistence and never ever giving up came from my dear friend Rocky. Sean’s story would be merely a footnote in comparison.

I want to thank Liseetsa, Gail, Shona-Ruth and Sara for showing me the path forward, for pioneering and trailblazing and advocating on behalf of everyone with LTFA. Whether you know it or not you are guiding me through this new part of my life.

© MICHAEL G SPORER AND LIVING WITH PEANUT ANAPHYLAXIS:ADULT VERSION, 2015

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