A 30 day free trial

I was recently going through my downloaded items and junking things out when I came across this picture.  The graphic is a little odd personally but the message is poignant.

In the days when I was more active with diabetes organizations, I remember hearing about a group that had got local celebrities to pretend to have diabetes for a day. Its something that I always wanted to recreate. I knew that if a person truly walked in our shoes that the perspective they would gain would be greater than any lecture or story we could tell them.  Look how much we have learned because we walk this road? 

Can you imagine getting a Health Minister to pretend that they lived with Type 1 diabetes for one month–a 30 day free trial of a life with diabetes? Can you imagine then asking them to do it on a minimum wage budget? Wouldn’t it be amazing if magically you could make them “feel” the experience of being high because they could not afford to use an extra needle that day? 

What if we asked an Education Minister to become a parent of a child with diabetes for one month? From day one they would be aware that the child’s life is completely in their hands.  They would be sleep deprived from night time testing, lows and corrections.  They would be even more acquainted with their cell phone and it would not just be a distraction. It would be a necessary evil to monitor their child when he/she was away from them.  

Can you imagine them having to inject a child? To learn about glucagon and have them fully grasp what it means to have to use that tool? 

Can you imagine them feeling the frustration of knowing that you weighed the food, you counted the carbs, you dosed the insulin and something still went wrong? 

Would they understand how vital choice is? Would they grasp why we need pumps, CGMs and coverage for all types of insulin? Would they understand the stress of sending a child to school and leaving their life in someone else’s hands? 

I would still love to do this. I can see it as a reality show.  These people would have cameras that would follow them. No set ups like some reality shows.  Real children with proper caregivers in the wings “just in case”.  For those who are asked to live with diabetes, there would be random notes or messages that would be sent when they tested or throughout the day.  During a meeting they would be distracted and high.  While playing with the kids at the end of the day, they would become low and have to sit things out for up to an hour while they eat and get their blood sugar back in range.  

I can envision this. I can see the impact. I can see the power it would have.  Now I just need the opportunity, the backing, the volunteers, and the cameras! Oh what an education we could give! 

Educating while Vacationing

Our trip to the US had an unexpected twist…educating at almost every stop.  As I have mentioned, Diabetes kicked our butt on many days.  Between carb counting errors, long days driving, and site failures, highs were around more than they were gone. This meant having to explain to people why my son was heading asking to use their washroom before he said hello and why he was drinking a gallon of water while trying to say hello.

Larry would explain to people that my son had Type 1 diabetes and was running high.  They would then ask if he was adhering to his diet and assumed at his age he wasn’t.  We would patiently explain that he did not have the strict diet that perhaps someone with Type 2 might have.  He eats in a very healthy manner but is allowed and enjoys certain treats now and then.  We would expand on the fact that as long as he matched insulin to what he ate, he was unrestricted in what went into his mouth.

Getting them to understand that the highs were not “his fault” and he was not a “bad diabetic”  was a challenge.  I quickly realized how society has been groomed to “blame the victim” especially in the case of diabetes.  They see it as a disease where the patient is the problem.  “If they didn’t eat this then they would not be sick.” “If they exercised more then they would not be in this state.”
It was rather disturbing but I hope that we did a good job educating the people that we did come in contact with.  I hope that they will stop before they blame the victim and realize that in many cases there is no blame.  Most of my son’s serious highs were because of failures in the tools we were using.  In our case, sites that kinked two minutes after they were inserted. This could not have been avoided…well it was when we quit using stomach sites but we could not know that at the time.  

We also, thankfully, came across people that knew exactly what we were dealing with.  They grasped the challenges despite not living with the disease first hand and were very understanding.

I once looked upon every interaction as a teaching tool. I have been very open about my son’s disease and work hard at dispelling myths.  My son, as I have said, is very private.  He does not like people to know about this disease and shys away from questions. This trip, I did not want to educated. I was frustrated that Diabetes would not give us a small break. I did not want to deal with educating the misinformed but that is not the way life goes.  Hopefully we gave people something to think about and a little more information than they had before we stumbled across their paths.

Pandering to the Ignorant

As many of you may have heard by now, on the 15th of July, the Southside Times printed an article written by Wendell Fowler.  I have read that he claims to be a “Food Literacy Activist, Motivational Speaker, Entertainer, Nutritional Consultant, CBS TV Host, Food Journalist, and National Health Columnist”. He may host something on CBC but he definitely is lacking on all other fronts–unless of course his article was written for entertainment. Since it was incredibly offensive, I am guessing he missed the mark there as well. 

The article in question is called “Pandering to Diabetics? You bet!”  The author claimed outrage that a group fundraising for children with diabetes were doing so with an ice-cream social. He equated this to serving an alcoholic “just one beer”.  He state that,It’s crystal clear why rates surge when diabetics are encouraged to eat just a little of the poison. Drug company cartels, researchers, and Big Medicine who peddle this misnomer don’t want people to be healthy using food; they just love to sell drugs. With ‘friends’ like that, who needs enemies?” His article goes down hill from there. 

The social was created for the Diabetes Youth Foundation of Indiana and was organized by the American Dairy Association of Indiana. The executive director Jenna Holt sent a scathing reply to the Southside Times chastising Mr. Fowler’s rudeness and ignorance. She was but one of many people from the diabetes community and the Diabetes Advocacy community who attempted to set the record straight. There has even been a Facebook page created aimed at educating the newspaper.  

It took me a few days before I had a chance to read the article. After hearing all of the furor it had created, I fully expected to see a retraction or apology in a recent edition of the newspaper. Imagine my surprise when I saw none! This newspaper, through its writer, insulted the entire diabetes community.  It suggested that people with Type 1 diabetes should follow Drew Carey’s example and they too would not have diabetes. A number of comments (close to 40 at last count) offered education and information on the realities of Type 1 diabetes including the fact that people with Type 1 diabetes can eat ice-cream and did not develop their disease because of poor eating habits.

Maybe this article was created to see the power of the diabetes community?  Maybe they wanted to sell more papers and increase their readership?  The many links that now lead to their site because people are so outraged and others what to see what the fuss is about has to be sending their traffic through the roof. But does that justify the article? Of course not. 

They have targeted a group of people–those living with diabetes and blamed them for their disease.  We know that people living with Type 1 diabetes did not “do” anything to get this disease.  My two year old was not IV fed an ice-cream drip causing his pancreas to self-destruct.  People living with Type 2 diabetes are also not to “blame” for their condition.  It is a complicated disease that has a large genetic factor as well as other factors contributing to this metabolic condition.  There are skinny people with Type 2 diabetes and there are obese people who do not have this disease. 

Mr. Fowler and the South Side Times did a wonderful job of bringing attention to those living with diabetes.  They tried to shame them but instead fueled them. The diabetes community has been loud and strong.  They have taken exception to the rantings of a man who has refused to educate himself about the real story.  They have written blogs, sent in letters to the editor, made phone calls and created Facebook pages.  They are educating and working hard to correct the damage done by this misinformed article and I applaud them! 

If you are going to write about diabetes do not write fiction or face the wrath of an increasingly powerful group of people living with the disease.

Me feeding my son a scotch…or my son’s first ever ice cream cake for his birthday