The T1D Unstoppable Theory

3/22/16
WRITTEN BY: Samantha Willner
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A decade before insulin pumps and CGMs, I was an intrepid little girl who never thought twice about having Type 1 diabetes. I competed in national swim competitions, played viola in the school orchestra, and spent my summers studying topics like bioethics at academic sleepaway camps. If a new activity piqued my interest — cheerleading, lacrosse, volleyball — my parents never hesitated to sign me right up. Combined with my strong sense of independence, their support gave birth to the liberating notion that there was nothing off limits to me as a result of my disease. I call this the T1D Unstoppable Theory; and after leaving my parents’ house at 18, I enthusiastically tested it across a variety of settings.

Just two weeks after college graduation, I moved into a run-down, second floor walkup in Queens in pursuit of a shiny Manhattan dream job. I landed the job, and in the years that followed, traveled solo to countries like South Korea, Iceland and Turkey. I couch surfed across New England, started a travel blog, quit the first dream job for a second one, and migrated from Astoria to Brooklyn. Then, shortly after moving into my second apartment, I developed diabetic eye complications.

It was a difficult and tumultuous time. Yet even in the crux of that struggle, I still felt strongly that no bucket list item, life goal, or brilliant idea was off limits to me because of my broken pancreas. Just a few months after undergoing eye surgery, I was on a plane to London, cradling a single carry-on and an optimistically robust itinerary.

Each of these experiences served as further evidence to support my luminous T1D Unstoppable Theory. To believe that I was somehow limited by the length of my pump tubing or the transmission range of a CGM was utterly laughable. If complications couldn’t stop me, then surely nothing could!

…or so I believed, until one night last October, when my brilliant, thoroughly-tested theory crumbled in the face of an insidious, life-altering low.

It had been a long day at the office and I’d worked straight through lunch. Upon arriving home, I threw my shoes haphazardly by the door, walked past the kitchen, and climbed directly, gratefully into bed. Then, one hour later, I awoke in a haze—drenched in sweat, lips numb, delirious.

Attempting to stand, I was instantly overcome by sweeping tunnel vision and pulsating waves of dizziness. My heart knocked against my chest with laborious thuds as I attempted to steady myself. Then, several terrifying realizations hit me at once:

I forgot to test my blood sugar.  

I’m incredibly low.

I think I’m going to faint.  

In a panicked stupor, I stumbled into the kitchen and ripped open the refrigerator door. I grabbed the nearest sugary substance — a bottle of maple syrup — and funneled it into my mouth. Unable to continue standing, I lay down on the cold, tile floor, forehead beading with sweat, pulse racing, the weight of every passing second pressing on me like a wall of bricks.

An indefinite amount of time passed. Then, miraculously, the dizziness began to wane. Soon after my heart rate steadied, then the feeling in my lips returned, and — though I’ll never understand how — I was eventually able to stabilize without losing consciousness.

The next day, my levels returned to normal, but my world felt as if it was turned upside down. In the wake of that petrifying experience something inside me was lost. My body felt dangerous and unpredictable, as if I was driving a foreign car on the verge of a breakdown. My mind became inflamed by worst case scenarios, diminishing the bright light that had once guided me from Reykjavik to Istanbul. Fears I had never considered bled into my dreams; unexpected lows, hypoglycemic unawareness, pump malfunctions, CGM failures. In the days that followed, those fears marinated and bubbled until I found myself afraid of sleeping alone.

In addition to the fear, I was also wrought with guilt. As an ambassador for several diabetes organizations, I’d made it my unofficial job to be a source of information and inspiration to others affected by T1D. Yet each night after work I returned home to my empty apartment paralyzed by fear, earnestly debating trading my well-earned adult independence for the safety of mom and dad’s basement. Just as I was seriously considering a fourth and final move back home, however, I ran into Jane.

Jane is a board member for JDRF in New York City. Besides being a superstar volunteer, powerhouse fundraiser, and inspirational advocate, Jane is also the mother of a spunky, adorable 6-year-old with T1D named Zoe. And, on Halloween morning, one week after my traumatic low, Jane and I both happened to be at a Manhattan fundraiser for Beyond Type 1.

Impervious to the fortuitousness of our encounter or the fact that I was implanting numerous terrible scenarios into her head, I began spilling every detail of my frightening low to Jane. I told her about the sudden onset of the symptoms; the tunnel vision and dizziness; the maple syrup; lying on the floor praying for my levels to rise. I revealed every one of my fears about living alone and my ability to care for myself moving forward. All the while, Jane stared back with kind, sympathetic eyes even as Zoe darted around her legs and pulled at her arms vying for attention.

“Were you wearing your Dexcom at the time?” she asked when I was finally finished unloading.

“No,” I admitted, “but I’ve been wearing it ever since, and I’m probably never taking it off again!”

“Samantha,” Jane began, and I braced myself for the rebuke, certain she was going to call me out for being so irresponsible.

What came next, however, took me completely by surprise.

“If it will make you feel safer,” Jane said, “I would be happy to follow your Dexcom data.”

Perhaps it was the sheer selflessness of her offer — after all, Jane already has a young daughter with T1D whose blood sugars cause enough sleepless nights — that made me suddenly realize my fears about living alone had been blown out of proportion. Illuminated by Jane’s kindness was the truth; that I didn’t need to give up my independence or move back-in with my parents to feel safe as an adult with T1D; I just needed to upgrade my home security system, so to speak.

As a child, that security system came in the form of my two wonderful parents. I was just too busy doing somersaults and perfecting my Moonlight Sonata to notice them in action, educating my swim coach, negotiating with camp directors, and sending off doctors’ notes to anybody with the audacity to second-guess my abilities. Though I no longer have mom and dad two steps ahead of me creating safety nets and eliminating T1D barriers, I do have access to the latest T1D technology and a wonderful support system made up of compassionate friends and family — namely, amazing people like Jane.

It’s been four months since that life-altering low and three months since Jane began following my CGM data. Using the Dexcom Share feature, she receives alerts if my blood sugar goes below 55 mg/dl for more than 30 minutes. If I’m already awake and treating, I simply text her a “thumbs up” emoji to let her know all is well. There have been two occasions, however, when she’s dutifully called to wake me in the dead of night because I didn’t hear my low blood sugar alert; two of many events in my life that have reinforced the life-changing value of CGM technology and the importance of being brave enough to ask for (and accept) help from others.

Just recently, I added my mother to my list of Dexcom followers in preparation for my next big adventure: two weeks of extensive testing of the T1D Unstoppable Theory on a beautiful beach in Bali, Indonesia with nobody else but my intrepid, data-sharing self.

 


Other inspiring stories from Samantha:

“Buzzing Bella”

“Seeing Clearly”



Samantha Willner

Samantha Willner was diagnosed with Type 1 diabetes in 1991 when she was just one year old. Since then, she has played an active role both personally and professionally in the diabetes community, previously working for JDRF International as a donor relations director and chairing the JDRF mentor program in NYC. Samantha also holds a B.S. in Communication from Cornell University and recently earned her MPH from Yale, where she conducted original research on barriers to insulin access affecting U.S. adults with type 1 diabetes. Currently based out of Philadelphia with her T1D husband and fellow GAC member, Ryan Campbell, Samantha is passionate about being a role model and inspiration for type 1 children and teens. For more insight into her life with T1D, you can follow her on Instagram @samanthawillner.