57 years ago at age 3, I was diagnosed into a world no child should ever have to face. What alerted my mom to rush me to the hospital that morning was that she heard me crying and found me sitting in the middle of the living room floor, clutching my hair in my hands ... screaming... trying to pull it out because I was in excruciating pain.
I was taken to the doctor's office where he declared "your daughter has Diabetes".
This wasn't a surprise as my family has a strong history of Type 2 Diabetes in the older adults, but my mom knew nothing about Diabetes except a familial history of it and the Doctor didn’t explain it to her other than to tell her to take me straight to the emergency room.
Unfortunately she chose differently.
The family was alerted and a flight to Minnesota was booked. By the time we arrived I was losing consciousness. My great uncle (an M.D.) came to check on me, saw my condition, and immediately called 911 for an ambulance. I was taken to New Prague Medical Center, where the doctor shook his head and stated "There's nothing we can do, Betsy is in diabetic coma. We have to transport her to Minneapolis. I need to tell you that she probably won't make it there".
Doctors couldn't insert an IV line to deliver life saving insulin so lines were run into the fatty tissue of my thighs to try to hydrate and I was given an insulin injection, again transferred to an ambulance with my great uncle and my mom, to be transported to Abbott Children's Hospital in Minneapolis MN.
Surgery was performed (arterial cutdown) to gain access to an artery in my ankle large enough to bypass the dehydration and vascular collapse I was suffering from. The diagnosis was Diabetes initially on Oct. 4 1966... and Type I Diabetic coma on Oct. 14, 1966, 3 weeks before my 4th birthday.
My body was consuming and breaking down tissues at an incredible rate to get energy (sugar) to cells, and the waste product was killing me.
My mom was informed that my blood sugars had stabilized within 24 hours of the start of insulin delivery and that if I died, it wouldn't be due to high blood sugar levels, but due to severe poisoning. I suffered brain stem damage later diagnosed as an adult by MRI unavailable in the early 1960's.
After 5 days in coma (DKA), I recovered consciousness, born into a new “normal", a lifetime of Type I Diabetes with no cure.
As I grew older, normal became a detailed, fluidly defined dance on good days and a juggling act on bad days. It was a constant non-stop blur of glass syringes sharpened on matchbook covers and sterilized in boiling water, diets that included bacon and fried bananas, glass test tubes, urine specimens, acid pills, and emergency rooms.
Travel was difficult as prescriptions couldn't be facilitated from state to state.There were no glucagon kits or glucose tabs for insulin reactions, only E.R. intervention. This was cutting edge care in the second generation after insulin was released to the public.
The trauma of E.R. visits for insulin shock 2-3 times weekly, severe bruising from restraint, and IV glucose delivery, and the extreme fear and worry that came with not being able to remember what had happened to me on these occasions, created a catalyst for my life.
By the age of seven, I'd been in the E.R. so many times, I had become a management expert. And I was learning at an exponential rate...
I never stopped asking questions... or challenging beliefs and ideas about Diabetes.
"Why?" became my buzz word.
I used to joke that I was aging in kitty years, which is 7 to 1, so I was really 48 and running out of time. People laughed. They didn't get it.
By the age of 12, I was going to Diabetes camp... with books on how the body worked and what people with Diabetes were deficient in. I was learning about the requirements of the body with the help of the M.D.'s, Dentists and other health professionals in my family. This was supplemented at the medical libraries and Universities where I lived.
As time passed, I started to reach toward the hope of refuting the catastrophic complications of Diabetes I was told would start at 16 and the prognosis of death by age 26 I'd been given....
I was told my Diabetes was brittle.
I made diligent attempts to gain the upper hand, becoming an athlete at a time when other diabetics including myself were told they would never engage in sports.
I followed the early diet program of diabetes before insulin was released.
I learned to count carbohydrates and dose the drug that kept me alive... but could quickly kill me if I made a mistake...
And I went to funerals, as every friend I went to Diabetes camp with as a child, or made friends with as an adult that had Type I Diabetes passed away.
The first was when I was 15.
He was the Diabetes Camp Director's son. Alan was 26, blind, and couldn't walk before he died. He was three doors down the hall from me during my three week stay in the hospital for a respiratory infection. He was my projected future... and he had no hospice, no support from his larger community... only his family; weary from "the battle".
I picked up the pace because I thought it would keep me alive or at least allow me to have a life... albeit an accelerated one. I started a family... something I was told would not happen by doctors, and gave birth to a beautiful daughter I was told would only have a 5% increased chance of being diagnosed with Diabetes.
I was hailed by my doctors as exceptional at a time when people with Diabetes were told they couldn't have children.
I was ecstatic when my daughter celebrated her 5th birthday with cake... not Diabetes. I actually believed they were right...
And I felt like we were beating the odds....
I had made it to 24... 3 years past the complications window... and 2 years out from my initial prognosis. I had a child... and no complications.
Then...
My treatment protocols were changed... and my health collapsed...
This is what the current paradigm looked like when I was placed on the new program... synthetic insulin and the standard ADA (food pyramid) diet.
Age 26,
Cholesterol 578,
Weight 158.
HA1c 11-14...
Pain, hair-loss, inability to exercise, pneumonia twice yearly, multiple hospital visits with no conclusive diagnosis, in spite of aggressive attempts to control blood sugar and weight. Unable to actively participate in sports, parenting or gainful employment.
I was a living example of the advertised complications of Diabetes, and a walking time bomb... and I looked just like the loved ones I had lost to the disease... and most of today's American population. I was a walking time bomb that would probably end in stroke or heart attack death.
All starting with the changes in my original program and exacerbated by current incorrect beliefs about managing Diabetes.
I became driven to get back the young woman I could hardly remember who had such a vibrant active life after childbirth and was able to engage it full on.
In my experience treatment was implying sustainability or acceleration of illness, I had to be on insulin to survive... but what about the other factors to treatment? I was not interested in sustaining either a drug laden model with all of it's inherent collateral side effects, or an increasingly bleak, downward spiral quality of life.
I also could not think it rational that... as I became progressively disabled, it was going to cost me more money to survive.
Really?... How would this even be possible?
This truth... and the fact that every time I looked in the mirror I saw reflected in it the death of my only child... diagnosed T1D at age 16...
... became fuel for an even deeper journey into the medical libraries, peer reviewed journals, and most current of science discovery specific to body function and the nature of Diabetes.
My mother button was now on red alert. And I was moving with speed and conviction...
We weren't out of the woods ... we were going deeper by the minute into the bowels of the beast... and it was ravenous.
I had to tease the information and experience apart to figure out what I had done that actually worked, improve it, and toss the things that didn't. I was in shock as problems with the paradigm I lived in became obvious. I was able to see the historical treatment and socialization paths of Diabetes... and the places where they had veered away from support for those with Diabetes.
My new goal then, became feeding the wolf I wanted to win.... I no longer believed that Diabetes was the villain, but a very scary and life threatening daily situation made worse by the assumptions about diabetes made by everyone who didn't have it, and some who were connected to it through loved ones or care provision, compounded by the history of it's socialization and treatment. So off I went to change it....
Now it was my turn to be the result of my own understanding... because I couldn't help others without testing my theories and regaining my own health. I had everything to gain and nothing to lose. So I shifted my paradigm.
After 14 years of spiraling health I was finally on the right track... knowingly.
This is what it looked like...
Age 32
Weight 122 (lost 46 lbs in 6 months)... <24 BMI
Cholesterol 126 (a drop of 450 points)...
HA1c... 7.2 (dropped by 50%) ...
I experienced the return of my hair, stamina, flexibility.... sleep....libido... and reversal of all problems including joint and muscle pain I had been experiencing, and the return to a vibrant personal life including the sports I loved.
As an Entrepreneur I even opened an award winning Belgian Chocolate Shop in 2000.... yep... a Diabetic, go figure. It turned out to be a life changer and a great awareness tool to take what everyone else thought was killing me and turn it to my benefit.
I won the Rocky Mountain News "Top of the Rockies, Best Colorado Candy Shop" award in 2004, was included in Culinary Colorado, a book of the best Colorado eatery's, and was written up in Sunset Magazine in 2005 as the best place in Colorado to get chocolate for Valentines Day... But... my shop was becoming a platform for what I was meant to do... bringing accurate awareness to Diabetes and destroying the stigma associated with Diabetes to improve outcomes for people with Diabetes.
Have I hit bumps along the way?... certainly...
When I took well meaning advice that didn't take function and mechanisms into account the results were quick, and I took big hits.
Last year I lost my best friend at age 50 (18 years T1D)... and my sister in law, who also passed away last year at age 62, from surgical complications due to lack of understanding about Type 1 Diabetes.
If we want a better outcome we have to understand what's wrong with the current environment, and how to change or mitigate it on an effective level.
My mission and purpose is to help people with Diabetes realize the gift given them in the opportunity to understand how to thrive and have an optimal life... rather than living down to the current idea of everyone else's normal.
I believe this requires a redefinition of "normal". It's a shift in the paradigm, similar to the way young Diabetes athletes are showing children and the world that people with Diabetes can participate in all activities, or parents who are hacking technology to build artificial pancreases for their children, only this is in the attainment of basic awareness and understanding about building health and challenging the environmental stigmas of Diabetes.
It has not defined me but Diabetes has grown me into the person I want to be.
Throughout the first 35 years of my life no one knew I had Diabetes unless I told them. Now I work to destroy the box of ignorance and silence, bringing education to those who want better lives and raising public understanding and support to a level supportive of the person with Diabetes, the most intelligent, motivated, and capable people I have ever met.
I have more than doubled my original prognosis of 26, and am actively assisting my daughter and others to have quality and quantity of life. I'm going strong because I dared to fly in the face of current ideas, change my beliefs, knowledge, and way of looking at health and question everything I was presented with as a person with Diabetes.
My success is an absolute testament of the things I've done right on my quest for understanding. Now I'm reaching out to teach them to others without the bigger (for many irrecoverable) crashes I experienced on my own path. I'm also fighting as an elder states-woman against current social ideas about the disease to bring support to those who are members of my D tribe.
My life today is rich beyond measure, and very different from the prognosis I was given as a child, the death and suffering I saw in my friends as an adolescent and adult... and the fear, concern and guarded hope I felt as a parent of a Type I Diabetic child.
It's so far beyond what I was told my life would be, that I can only respond to the people I meet by telling them….
“Anything is possible, you are on a journey, how you define it is up to you.”
Betsy Ray T1D (54+ years)
Speaker, Educator, Consultant, Author, Activist, Cyclist, Fundraiser
Parent of a child with Type I Diabetes (19+ years)
Founder/Executive Director - Diabetes Activist
Representative IDF (International Diabetes Federation)
Expert Testimony | Instrumental in passing first drug pricing bill to cap insulin USA/COLORADO
Presenter RMADE (Rocky Mountain Association of Diabetes Educators
Presenter TEDx Vail
Co-Host - The Bonnie Sher Show
Guest Blog Author - DiabetesMine
Delegate - DiabetesMine Innovation Summit, Stanford University
Joslin Medalist
Eli Lilly Journey Award 50 year Silver Medalist
Founding Grand National Champion “Inspired By Diabetes" Competition
Lifetime Member - Guild of The Children's Diabetes Foundation (CDF)
Owner Belvedere Belgian Chocolates - Cherry Creek North, Colorado
Remember Me Honoree JDRF Dream Gala
Top Private Fundraiser Tour De Cure - ADA