Today, we're welcoming Indianapolis type 1 D-peep Jason Meno, who is a #WeAreNotWaiting volunteer and has quite a story to share. He spent time living at a Buddhist retreat for work (and to find serenity, as a bonus), but instead discovered a rare unpleasant diabetes complication -- which has fueled his passion to help.
This is a longer post, but well worth the read, we believe!
Diabetes in the Wild, by D-Peep Jason Meno
About three years ago, I found myself living and working at a Tibetan Buddhist meditation retreat center in the middle of the Colorado Rockies.
If you think that went over well with type 1 diabetes, you’re in for an adventure… I certainly was. Being diagnosed at a very young age in 1998, I was 20 years old at the time of finding myself nestled into this peaceful mountain area of the country.
The center was located an hour away from the nearest hospital, had no cellular service, was often inaccessible by car due to extreme weather, and electricity was sparse. I had agreed to live and work at the center for one year creating a web store for their on-site gift shop, which was a fantastic and terrifying experience as a type 1 diabetic.
Everywhere you went on the land was photo-worthy, but the rugged lifestyle at high altitude was physically demanding. Living at the center also meant I received free meditation training and staff members were required to meditate at least an hour each day -- which I did happily.
Since then, having a strong meditation discipline has become an invaluable part of my life and ability to stay sane on the roller coaster of diabetes.
Life in the Rugged Wilderness
The experience out there was an interesting one, both generally and in the context of diabetes.
I first started living at the center in a small cabin nestled in the foothill of a nearby mountain peak. The cabin was a half-mile walk through thick brush and mud roads from the main dining hall containing a refrigerator, which stored my sacred insulin and glucose stash. Food was not permitted in tents or cabins since the local bears were very active in pursuing anything edible. Some of my coworkers would come home to their thin wooden doors swung wide open and bear tracks inside (peanut butter was usually the culprit).
This also meant that whenever I woke up in the night with a low glucose number, I would have to make the painful trek through the rough trails and pitch-black mountain night.
The scariest part about this wasn’t the horrible feeling of being low, but rather walking next to the mountain deer, which wouldn’t make any noise until you were within a few feet of them. Once they felt uncomfortable enough by your presence they would jump high into the air and hop away, rustling every bush and branch in their path. Sometimes, I think the adrenaline rush I received from these moments helped raise my glucose enough that I didn’t need to finish my journey to the kitchen.
During the colder months, staff members are required to move into one of the only heated lodges on the land since our cabins are not insulated enough to withstand the mountain winters. The mornings were often dazzlingly bright with 3-5 feet of snow on the ground and the wonderful aroma of sandalwood incense and soft drone of morning chants drifting out from the local shrine room.
We had a community refrigerator in the lodge as well, which made my access to insulin and food much more manageable.
Once spring came around, I ended up moving into a walk-in closet in part of a dormitory on a different part of the land. The closet was tremendously small but just big enough to put a small mattress inside and the dorm had a fridge of its own as well. The dorms themselves would be filled with guests and visitors throughout the year and there was an upstairs room occupied by the gift store manager.
On Fainting Spells and Enlightenment
In May of 2014, I woke up in the middle of a rainy night to use the restroom. As I returned to my room, I felt a bit off. I took a drink of water and then immediately began to lose consciousness. My ears started to ring, and my vision narrowed into a dark tunnel. I fell to the floor but recovered consciousness quickly. I had never gone unconscious from low blood glucose before, so I tested myself and I was at a normal 110. I tried to stand again, but each time I raised my head above my chest, I would lose consciousness again.
There was a phone about 10 feet away from the closet, so I ended up dragging myself across the ground to make my call for help. I dialed our emergency number, but the line would not connect because of ongoing phone line maintenance.
My options were now either to drag myself a quarter-mile in the rain through mud and rocks to access the nearest emergency radio or to call out to the gift store manager upstairs. I chose the latter and called out my coworker’s name as loud as I could several times, until he woke up and ran to the nearest on-call land radio to call for help.
The aid arrived after half an hour to assess the situation. By this time I had crawled back to bed and noticed my legs had begun to swell to an alarming size. A first responder was called and arrived after another hour and agreed that I needed to be transported to the ER.
Due to the rain and storms, the evacuation helicopter was unable to make it, so an ambulance had to travel the hour-long drive through the perilous slick mountain passes onto the land we occupied. I was put into a wheelchair and brought to a stretcher outside the dormitory. Once loaded into the ambulance, I had a cheery conversation with the medics, as I imagined picking up young diabetics from a Tibetan Buddhist meditation center in the middle of the mountains was not a normal day for them.
One of the medics began to prepare an IV, but the roads were rocky and the inside of the ambulance shook back and forth. He held the needle over my vein waiting for a still moment among the turbulence. I commend these professionals for their hard work, patience, and concentration at such ungodly hours of the night. The needle went in painlessly and we arrived at the hospital as the sun began to rise.
By this time, my swelling had gone down and I was no longer feeling so unsteady. After a rainbow of blood tests, I was discharged with a fainting spell and recommended an increase of salts and fluids.
As the days went by, my health improved. But a week later, I ended up with ringing ears and tunnel vision, blood rushing to my head and legs and falling to the floor as my body began to spasm and shake. I was fully aware and knew seizures could take place due to hypos or dramatic glucose changes, but neither of those were happening to me at the moment. Long story short: I ended up back at the ER and all the tests came back normal, and they sent me back to the mountain with a referral to a neurologist.
Those spasms and fainting spells stayed pretty consistent from this point on, but one thing became progressively worse: my ability to think and hear my own thoughts.
I started having moments when all of my thoughts would go completely blank. Even if I tried, I was incapable of forming a single thought. Usually this would also be coupled with an involuntary fixated stare, and I could not move. It was like being put into a semi-vegetative state.
Now remember: Here I was living at a Tibetan Buddhist retreat center, where states of non-thinking and stillness were signs of deep meditative attainment.
A friend joked that maybe I had become enlightened.
My daily meditations became a breeze at this point, and I could effortlessly sit and stare at the ground for hours. Even though I was not thinking, I still had awareness and understanding of concepts – meaning I could not stay focused on the present moment even without thoughts.
Often I would entertain myself by conjuring up feelings of happiness, sadness, or frustration. In my understanding of the Buddhist concept of how the mind works, ‘thinking’ is not limited to just the sound of thoughts in your mind, but also extends to emotion, cognition, processing, and reactions. Thanks to my unique situation, I got to experience this directly.
I remember there was a day when a storm was rolling in, and the loud thunderous claps would echo throughout the mountain valley. I was sitting at the dormitory kitchen table trying to read a book, but wasn’t able to fully comprehend the words as quickly as I normally do.
Suddenly, there was a massive lightning strike right over the dormitory that made me jump in my seat. It took me quite long to register what had just happened, with a strange sense of raw excitement and adrenaline. It was somewhat hilarious, in a morbid kind of way.
Diagnosing the Problem
It took a couple more weeks, but I was eventually able to get in to see a neurologist. Other staff members took good care of me, as it became challenging for me to do simple everyday tasks such as holding conversations and walking between rooms, and often my arms and hands would twist and jerk back and forth.
My neurologist did an MRI and EEG, noticing nothing out of the ordinary, but clearly seeing my spasms and lack of cognitive abilities. The best-guess diagnosis: “Myoclonic Seizures,” which is where muscles jerk in response to neural signals from the brain or nervous system. The anti-convulsant medication prescribed did the trick, and after my first dosage everything changed. I was no longer shaking, my motor skills were perfect, and I could have full conversations once more. It was truly a massive relief to be able to go about my life once more.
Meditation also became twice as hard, since I wasn’t “enlightened” in the same way that I had been (ha ha!).
Unfortunately, all my symptoms returned a few months later, and after being cycled through several other drugs, I eventually left the mountain center to pursue my medical care full-time. Another year of trial and error led to a cardiologist giving me a new diagnosis of Autonomic Neuropathy related to diabetes.
While that diagnosis is not 100%, it’s the coverall consensus that a lack of blood flow to the brain caused all of the symptoms I experienced. I’m now on two medications to keep my thoughts cranking out, and it’s been a winning combination for the past two years.
This has all allowed me to continue my education at Indiana University-Purdue University of Indianapolis, going for a computer science degree. I aspire to continue my education and create software that can make the lives of those of us living with diabetes a little easier. Given that interest, and my own use of #WeAreNotWaiting technology for an open-source closed loop, my diabetes has become an abundant resource of data and guide to finding better treatment.
I’ve started helping out the Nightscout Foundation in talking up the tech, and based on what I’ve gone through I like to joke that these new tools mean #WeAreNotWaiting for complications to set in… or you know, enlightenment.
Wow, that's quite a story, Jason. We're sorry you've had to endure all this, but happy that you've chosen to channel your energy into helping PWDs live better. Thank you!