A Captive Audience


My Dad is a frequent flyer. So frequent in fact that he is just about to hit the United Airlines’ Million Milers mark. Can you imagine flying that many miles? And those are just the miles he’s flown on United! For people who follow my blog, you have come to know my family a bit and perhaps you’ve even met my Dad. If you have, you know firsthand that he is extremely friendly and because of this people are drawn to him. Maybe it is his genuine smile or the way he’ll notice something you’re wearing or mention the local football team or do something to become engaged in a conversation that goes beyond the simple niceties. I really see this as an innate ability he has. Either that or he’s just a people whisperer.

Dad can go to the gas station and come home with a story you wouldn’t believe – and miraculously he learns the most amazing things or gets a little known fact about some obscure archaic principle – the list goes on and on. It really is a thing to watch.  As you can imagine we all love hearing who he met and what he learned.  It is so lovely and charming to watch that his way has become contagious. Doug came home the other day and said, “I’m turning into your Dad.”

I remember many of his encounters including the baker who made fresh dough for Panera Bread, the woman who adopted five children from Ethiopia, the lady who was on her way to safari in Kenya and to this day continues to send my Dad photos of her travels. One of my favorite stories is about a woman he sat down next to on a flight to the west coast. Dad started talking and soon realized they were both headed to San Diego. The woman mentioned she lived north of the city and when Dad asked where the story got interesting very quickly. She said, “Encinitas” and Dad, always looking for a common point of interest said, “Oh my wife’s childhood friend who she used to walk to school with every day has a resale store in Encinitas.” And, I kid you not – the woman turns to my Dad and says, “Your wife is Susan!”  WOW!

I do believe that it is a very very small world if you just embrace the idea that almost all strangers are only friends we have yet to meet. My father is the embodiment of this approach to life as was his father.

So on days I continue the tradition I am proud to say the least.

It pays to embrace this approach to life. You just never know what you may learn or come to understand about something you have no idea about. Like, say… Ankylosing Spondylitis.

My story and who I am has to include the advocacy work I do and the community I love so much – and the Arthritis/Autoimmune Disease/Spondylitis story we all hold as part of our personal narrative.  I urge you to find ways to share about your story – our story. The Faces Stories!

Especially when you have a captive audience – like being in a seat on an airplane!

Today on my way to Maine to see my family I had the most wonderful time speaking with my row mates. After a few moments, I found out that the guy to my left was a first year resident.

Ta Da!!!

As soon as I heard him say this I knew he was not getting off that plane before he heard me speak my story.  I was so going to tell him about AS because I know that personal stories are remembered like the ones above my Dad has shared. So I shared, and shared, and well… shared some more. He might have been on the isle but that future doc (his name is Chris) was never going to meet a person with AS in the future and not have better knowledge in his noggin!

No. Sir. E.

To Chris’s credit he was interested and had a basic idea what AS was. What he learned was that someone can look completely “normal” and have a horrible autoimmune disease. He learned that psoriasis and iritis/uveitis are blaring ringing bells to think Spondylitis as is horrendous morning stiffness. He learned about how there are five diseases under the “spondylitis” umbrella. He asked about the information he had learned in med school that Spondylitis is “predominantly” a man’s disease.

Don’t worry ladies; I had a lot to say on that matter although I did give him the current CDC information and statistics and share that Spondylitis is underdiagnosed period but because of this misconception women have an extremely difficult time getting a diagnosis.

He learned a lot about treatment options and medications and we discussed the difficulty people have with access to care and treatment due to our current healthcare system. He put a face to this disease. He could have put yours to it. Or another person in another place at another time could put your face to Spondylitis. But we’ve got to find the opportunities to share our stories – personally. Making a personal connection imprints the information so very securely.

Have you recently met someone who you shared your story with? I’d love to hear about it.

The power of our personal stories is the best tool we have!


Speak up. Speak out. Speak Spondylitis!



And, so you know…

Chris is about to get engaged to a woman and a doctor (who in turn will learn about AS.) She is from Tibet and he loves her sense of humor and the way she looks at the world with a Buddhist lens. He is going to be an internist with a minor focus in psychiatry, and he loves long walks on the beach. (well – I don’t know about that last one but it sounded good.)

The gentleman to my right heard us talking and mentioned his Mom had RA and was on Remicade. He also gave me the great tip about using pressure socks on flights to help with inflammation. One of his favorite movies is The Ultimate Gift (I’ll be watching soon) and his wife buys him gadgets. He had a portable dvd player, a nook, Bose noise reduction headphones, and was a few months shy of 30 years of marriage.






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