Wednesday, 11 December 2013

empowerment, exercise and "devastating diseases"

Today i rode my bike for 210k, i rode with guys who've won world championships, worn leaders jersies of grand tours (this year). I got up pretty early to make the ride, i had to leave mine at 6am to make it to the start by 8:15 so I didn't have time to open my e mails. I didn't touch any work stuff until after i was done riding a very long way and consuming my bodyweight in pannakin muffins.

Had i opened my emails before i set off pedaling i would have found out that i wasn't capable of doing so. you see the ADA informed me that I have a "devastating disease".  That i will carry a lifelong burden of "suffering and danger and fear."  That without a cure for diabetes my life would be limited by my condition and that those close to me would live their lives in "that terrifying, gut-wrenching place." 

Fortunately i didn't read this, i checked my blood glucose and went about a normal day, without being arrogant i did things that most people, diabetic or not, couldn't do. I was told when I was diagnosed that I couldn't race my bike any more, I didn't take no for an answer and i educated myself, i used myself as an n=1 experiment, i taught myself how to manage my diabetes, what to eat and when and how to use my insulin to make myself the best version of myself i can be. 

In my work with AYUDA and with the Pascua Yaqui I have tried to share my message that my diabetes doesn't hold me back. A lack of supplies or medications would hold me back, a lack of available education would hold me back but I have the great misfortune to have been born in a country where the state takes care of my medication needs and where i have access to education which has empowered me to take the best possible steps towards controlling my diabetes. I'm immensely LUCKY to be in this situation, diabetes has made me friends and taken me around the world, without it my life wouldn't have the meaning and the direction it does. 

Our goal at AYUDA is to empower people, to give them the tools they need to make the best of their situation with regard to their access to supplies and their diabetes. Whatever their situation we give them the invaluable tool of education which allows them to make the best of their resources and to live happy, healthy and productive lives with diabetes. Most of all we give them a community to belong to, a network to rely on, and a positive attitude for them to go on and empower themselves and others and serve as agents of change in their own communities.
In sharp contrast the ADA has told me i'm disabled (i'm not) that i am a burden on those that love me (i hope i'm not) and that my life is worthless without a cure for Diabetes (i couldn't care less). Their language is neither empowering nor educative, it's upsetting and offensive. Perhaps,a s they have no people with diabetes amongst their officers they don't understand this. Perhaps they do but they don't care. I'll likely never raise as much as this one email will but I would question the real value of what is being done here. My goal is to help people to live healthy , happy lives with diabetes, i need to raise funds in order to do this but the goal is what's important. What the ADA has done is put the cart before the horse, the money before the people and the cash before the cause. 

 My diabetes doesn't hold me back. What i do want is access to insulin for those who need it. I have said and will keep saying that i am fortunate to have the insulin and education that I need, what I want for diabetes is for my brothers and sisters not to die from a treatable condition for want of cheap supplies. I won't go into the why's and wherefore's but please investigate the 100 campaign who aim to achieve 100% access to insulin within 100 years of the creation of syntheic insulin. People in Mali can expect to live just 12 months post diagnosis, this IS something worth crying about, living with diabetes in the USA, with access to medication, is not. 

please take the time to contact the ADA and let them know how this makes you feel, even if you do not live with diabetes. Please think carefully and give generously, especially at this time of year. 

here's that link again:

here are some pictures of the last two weeks with my devastating disease and my life burdened by suffering and fear.


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  2. Side effects of this devastating disease include the ability to ride a bicycle really fast (if you want to) and abnormal, potentially grotesque, amounts of facial hair.

    Just kidding, you look delightful.

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