The awesome community no one wants to be part of

 The awesome community no one wants to be part of

Any health condition is very personal and not everyone will be ready to come out and discuss about it with people outside of their intimate circle  This is all the more true when your child has lifelong condition like diabetes.  I truly believe in the theory that sum of all parts are not equal.  From day one, I wanted to gather as much information as possible.  After all, I'm sure we have gained more, by coming out and talking to folks from various background about Sriram's Type 1 condition.  This is not only in terms of the knowledge we have gained over the past two years, but also the emotional and moral support we have received from the community.  On the other hand, we did run into people who gave us advise such as gooseberry, onions, Fenugreek etc. will cure diabetes.  I try not to get into a defensive mode in such situations and just move on.  Sometimes, I try to explain the difference between Type 2 and Type 1 diabetes when I hear such ideas.  But, it won't change people's mind more often than not.

Soon after Sriram's diagnosis, I realized that this is a great community no one would want to be part.  of.  A few days after the diagnosis, my husband's teammate introduced us to his wife's friend Pauline, who has a son with Type 1.  We met them at their house couple of days after the diagnosis.  They spent over 2 hours with us.  Their 17 year old son was diagnosed almost 9 year ago.  Their son was a sophomore at college when Sriram was diagnosed.  Her insights on how she managed her son's condition was both informative and daunting.  Sriram had his first scary low (50s) at their house.  The mom handled it like a pro.  They had some glucose tablets at home.  We gave couple of them to Sriram.  She also offered peanut butter sandwich and explained that we should always give some protein while treating lows.  She mentioned about how continuous glucose monitor and insulin pump changed their lives.  Whe we left their house, he said, "Be confident, you will get used to this new normal soon".  New normal is the key word.  I dont think that I grasped the enormity of it at that point of time.

On the day of diagnosis, we met an Indian family during while checking out.  The father was in touch with me for the first few days.  We met with their family the following weekend.  His son was on an older version of the Medtronics pump and they were waiting for the new one(670G) to come out in the later part of 2017.  That 9 year old kid explained to me how the new pump(artificial pancreas) would work and how excited he was about it.  The whole conversation was so surreal.  I was surprised to see the way a 9 year old boy could externalize the fact that one of his organ is going to be replaced with a machine.  At that time, I wondered if Sriram would be able to do that ever.  But, he surprised me.  He prepared a keynote presentation about diabetes to his show in his class with in 9 months of the diagnosis.  We are in Apple's town, so we don't use powerpoint :-)

Pauline mentioned to us about the brave buddies and Carb DM group.  I  became a member of the brave buddies yahoo group.  The group is very active and folks exchange mails about various topics.  I was a quite bystander initially.   Sriram is used to going to a number of day camps through out the summer break.  I knew that this year is no normal year and I have to find a camp that would have the appropriate people to take care of him.  I sent a mail to the brave buddies group asking for their suggestions.  I got over 10 replies with varied ideas.  Becky one of the type 1 mom replied back to me and offered to meet that weekend.  She stopped by our house with her son that weekend and spent few hours with us.  Becky was the on who told me that this is the awesome community no one wants to be part of.  She invited us to her daughter's birthday party at pump-it-up the following day.  Sriram met a bunch of other type 1 kids in the party.  I was surprised to see the way this community is ready to share information and give confidence to newly diagnosed.  More recently, she was the one who lent us the device we needed to get Sriram started with his Loop Artificial Pancreas System.

Apart from the folks I have met in various events since Sriram's diagnosis, there are whole host of "friends" on Facebook whom I have never met or spoken to.  These folks live all around the world and they are ready to answer the posts about T1D anytime of the day.  I have posted questions on Facebook in the wee hours and got immediate responses.  I try to post responses when I'm up in the night waiting for Sriram's blood glucose to go up or down.  At some level, its really comforting to know that you are not the only person up in this world at 3 AM.

The power of collective knowledge in the era of social media is immense.  Prior to Sriram's diagnosis, I hardly used Facebook.  I used to post Sriram's photos whenever we traveled, since we moved back to US in 2012 and look at my feed once in while to see whats happening with my friends back home.  But, Sriram's diagnosis changed my outlook and need totally.

I know a lot of people criticize Facebook these days due to the recent revelations of how the management team handled the 2016 elections.  I approach this whole issue from two angles.

Facebook is like a kitchen knife to me.  I had a pretty bad cut last week when I was chopping onions.  So, did I throw away the knife?  Of course, I didn't.  I know I just have to be more careful going forward.  Also, imagine how you would feel if I ask everyone around me to stop using knives as I had a bad cut.

Secondly, I don't think that the propaganda or fake news or whatever name you want to go by, gave us Donald Trump or created racists around us.  People always had racist or extreme instincts.  Facebook and other social media sites validated their feelings and made them feel comfortable to come out and openly discuss about them.  As a result such ideas has become a part of the mainstream conversations.  Social media is an echo chamber where people with similar background, thoughts and ideas are "friends" or "followers".  When they share, post their thoughts or articles, it tends to spread across a whole lot of people with similar background or thought process.

That's exactly is what happening in the diabetes community too.    People who already have amazing ideas on sugar surfing, Do-It-Yourself system, patient advocacy etc. are able to communicate with people who need such information / ideas.  I have access to them because, I'm part of those groups and have parents of Type 1 kids in my friends list.  Personally, I can think of only the diabetes community as that's what I'm exposed to. I'm sure there are tons of other niche areas where these social media sites play a huge role.

November is the diabetes awareness month.  There were various articles published and shared among the public to educate the larger population about the signs and symptoms of Diabetes.  I feel that such information sharing is very critical to identify and diagnose Type 1 diabetes before someone lands up in the emergency room.  I'm responsible for preparing the Newsletter for our school's Parent Teacher Association (PTA) every month.  I was fortunate to share information about the signs and symptoms of diabetes with all the PTA members of our school this month.

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