By a good general definition, a geek is someone who is passionate about something, and, typically, geeks aren’t just passionate about one thing. One of the things I find to be awesome about the geek community is how we use our networks of geeks to get word out about other things we are passionate about.
One of the fandoms that I’m involved in is Supernatural, and it is one of the most active internet fandom communities. Supernatural fans regularly raise money for various organizations. There are constant drives for A Dog’s Life, which is show star Jared Padalecki’s personal choice. There’s typically a variety of fundraising for various cancer societies mostly in the name of Kim Manners, a Supernatural (and X-Files) director who they lost to cancer.
So, when I hear about a fellow Supernatural fan wanting to raise awareness, I think it’s a great idea and want to spread the word. Recently, the Supernatural fandom began a fun little game to collect a series of rubber ducks and send them to Vancouver (where the show is taped) for the production’s duck pond.
Well, a friend of mine decided to take the opportunity to do something more with her ducks, and I thought it was so great that I would help her get her message out. The following are her words.
Pretty cool idea starting up DuckNation! I looked all over to find rubber duckies in stores, but couldn’t find much. The more I looked, the less I was interested in sending a duckie until… The other day I was looking at pictures of the duckies in one monitor while using the other monitor to talk to people in a group for gastroparesis, a medical condition I have. Somehow the words “tubie” and “Duckie” got in my head at the same time and thus the idea for TUBIE DUCKIES was born! Why Tubie Duckie? Because of a simple reason: millions of people are being starved every day while they have full access to food, because their digestive systems aren’t working.
Gastroparesis (GP) literally means “paralyzed stomach”, chronic intestinal pseudo-obstruction (CIP) is paralyzed intestines, and together these are referred to as DTP, digestive tract paralysis. When there is damage to the vagus nerve, signals can’t get from the brain to the internal organs, so food sits in the stomach and/or intestines longer than it should, preventing further eating and causes other health problems. There is no cure, the treatments dull the symptoms but can cause just as many problems as they help, and not eating to avoid extreme pain isn’t an option. Some people (like me) are ‘lucky’ enough to just change how, what, when, and why we eat (low fat/low fiber diet, eating tiny meals up to 10x/day), while others can never eat or drink again and must be put on feeding tubes or IV nutrition. This is where the term “Tubie” comes from – it is a nickname for kids who are put on alternate nutrition.
The most difficult part of DTP is often getting the diagnosis. Many doctors have either never heard of it or don’t understand it, so it can take weeks, months, or years to receive help. Friendships and relationships are tested because the general public hasn’t heard of it – there aren’t commercials, pamphlets, or biology classes that mention it. Most people first hear of it when they or a loved one is diagnosed. The scary part about this is an estimated 8 MILLION Americans, 1 in 25 people, have some form of DTP!
There are no risk factors. There are no symptoms until it’s too late. There’s no preventing it. Absolutely anyone can find themselves with this condition; it affects all ages (even 2 day infants), races, socio-economic levels, body shapes and sizes, and fitness levels. Causes stretch from a simple virus to a head/neck injury to gastric bypass to no known cause whatsoever. No one is immune!
G-PACT is the non-profit organization helping people with DTP to navigate this condition. G-PACT’s DTP Awareness Week (Aug 19-27) will be over by the time you get this, but I’m still participating in order to help spread the word in hopes of reaching out to those who are affected and don’t know where to turn for help, and to inform the public that this condition exists. Doctors couldn’t even explain gastroparesis to me when I was diagnosed and I don’t want others to feel the fear I did at facing this condition alone. It would mean so much to me to have information about DTP/GP/CIP posted with my Tubie Duckies.
I would like to take Tubie Duckies beyond DuckNation and find a way to make hundreds (or more!) to give to kids who have feeding tubes (Tubies) so they have a little friend who is just like them. As you can see, I’ll have to come up with a safer idea for the tube, but I’m hopeful this will happen!
Thanks and Go DuckNation!
If you think that kids who are geeks get picked on, think about kids who can only eat through a tube! So, in that spirit, I wanted to share this with all of you and would hope that you would share with others you know.
UPDATE: You can email Sheri who wrote the letter and sent the Tubie Duckies above if you have any questions or want to share experiences!