I was diagnosed with diabetes at the age of 11. Before this time, I had spent approximately one day of my life every week in a doctors office. I grew up in the system, surrounded by doctors, nurses, shot, and dismal hospitals. Even at a young age I remember many things- doctors threatening to take my parents from me, that lack of normalcy that comes with a healthy life, and the feeling of isolation when there is no hope for your condition.
From the moment I was diagnosed, I began believing I would die young. I wrote my first will at age 12. My closest friends and family to this day will still receive Beanie Babies and Lakers gear as apart of my last will and testament. Growing up conservative, I was also told I had sinned. That God was punishing me for my sin with diabetes. My penitence was prayer after prayer for healing. That healing never came.
There is a deep sadness which comes into your life when you are told so young that your sin gave you a disease. Then as you age, you are told no one wants to marry you. That you do not get to choose a career you love, because you need to be pragmatic, and think about insurance plans and deductibles. This you cannot avoid. This is how you stay alive. With sixteen years of being diabetic my penitence has been over 40,000 shots.
When I was diagnosed, my mother told me she had been visited in a vision from God. She commonly reminded me my life had been saved for a special purpose that would touch many lives. They even joked with the doctors marveling at their newest success story that perhaps I would cure diabetes. This angered me so much. They spoke over me and laughed as I was in pain. I remember throwing my hot plate across the room while the 10 doctors stared in horror and left the room suddenly. I was life flighted in a helicopter from rural Missouri, where there are no hospitals, doctors, or medicines. They said I was a miracle.
Reminding a child they should be dead, is not necessarily hopeful.
I never spoke about diabetes outside of my doctors office. I say doctors because there are many, I have seen since I was 11. Each one has a different understanding of how to control patients. Doctors love the word even, control. I became what they call a “non- compliant patient”. Again, no one asked me any questions. No one asked me what it was like to be diabetic. They didn’t see me as a person, just a disease. I lived in hidden emotion. And that emotion is suffering.
One day I remember a doctor telling me I needed a pancreas transplant. I was poor in a very real sense- and it lived on my brow. I could not afford medicine. I could not afford treatment. I asked for my medical records and waited another 5 months for more doctors who had less training than I did about diabetes, but could write a prescription. I wondered how many others lived in this torture- wondering if they would have to choose between food and medicine- and if they made the wrong choice, if it again, was their fault. I continued to live without self-worth.
I met a man one day in Bangalore who changed my life. I was asked to speak at his clinic about what life was like as a diabetic. I was asked about what it is like to be diabetic in the US, and India. How it affects my family, my perspective, and what role faith plays in your treatment. I didn’t make it through many of the questions. I wept.
I wept in front of these 100 people, many I had never seen before. Then all of them, all 100, came and prayed for me. All these years, all these 40,000 shots, and the most simple question- how does it feel to be diabetic- had never been asked. And because of that, I had begun not caring for myself. I was unworthy of my suffering, and had no hope.
Viktor Frankl once said, “In some ways suffering ceases to be suffering at the moment it finds a meaning, such as the meaning of a sacrifice.” After years of stigma and burden of disease on my shoulders I felt free. Free to move ahead, free to help others, free to remember I am just as any other man in this world. That we must prove to no one but ourselves that we are worthy- worthy of our sufferings.
Out of pity or compromise we forget that these markings of affliction are our greatest strengths in disguise. This humbly reminds us we are human, and without these markings, we forget our greatest commandment is not just to love ourselves but those around us. This is my vision, that we learn not just to treat patients, but to teach how to be worthy of suffering. To be worthy of suffering is to expose the strength and depths of the human spirit more than any medicine could imagine.
God moves in a mysterious way
His wonders to perform;
He plants His footsteps in the sea,
And rides upon the storm.
Deep in unfathomable mines
Of never-failing skill
He treasures up His bright designs,
And works His sovereign will.
Ye fearful saints, fresh courage take,
The clouds ye so much dread
Are big with mercy, and shall break
In blessings on your head.
Judge not the Lord by feeble sense,
But trust Him for His grace;
Behind a frowning providence
He hides a smiling face.
His purposes will ripen fast,
Unfolding every hour;
The bud may have a bitter taste,
But sweet will be the flower.
Blind unbelief is sure to err,
And scan his work in vain;
God is His own interpreter,
And He will make it plain.
- William Cowper
Lord, make me a channel of thy peace;
that where there is hatred, I may bring love;
that where there is wrong, I may bring the spirit of forgiveness;
that where there is discord, I may bring harmony;
that where there is error, I may bring truth;
that where there is doubt, I may bring faith;
that where there is despair, I may bring hope;
that where there are shadows, I may bring light;
that where there is sadness, I may bring joy.
Lord, grant that I may seek rather to comfort than to be comforted;
to understand, than to be understood;
to love, than to be loved.
For it is by self-forgetting that one finds.
It is by forgiving that one is forgiven.
It is by dying that one awakens to eternal life.
“When it’s over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it is over, I don’t want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument.
I don’t want to end up simply having visited this world.”
— Mary Oliver
As I just climbed through my parents attic to find my copy of Paul Collier’s, The Bottom Billion, I realized it may be a good time to brush up on all the reading I’ve wanted to do related to my work.
Note: some of the links may not be active so let me know @teetertother if they do/do not work!
Acumen Fellows Reading List
Rights and Responsibilities
Liberty and Social Order
Equality and the Quest for Social Justice
Community and the Search for Humanity
Books on Innovative Solutions to Poverty Alleviation
When I was in university, I got obsessed with the movie the Namesake thanks to my dear friend Chetan. The whole movie centers around the story of a second generation Indian-American son coming to terms with his existence with maintaining a dual identity. It’s an everyman story- the concept that the journey that takes us home is often the most painful. It’s my story in many ways.
If you asked me a year ago when I was in Chicago to move back to my parents, I would have laughed in your face. Now that’s exactly what I am doing. Yes, I am living with my parents at 26 years old until I can get things with Sucre Blue legal, funded, and organized before returning to India.
I don’t have a phone.
I don’t have a car and I live in the suburbs.
And I pretty much have flashbacks daily of being an angsty 16 year old trapped in suburban splendor.
But I love every minute of it.
There’s a lot of sacrifice that comes when you leave your home. There’s guilt that surfaces when you miss everything and are always gone. It’s like being the workaholic father who never attends his daughters ballet; or the mother than misses the son’s basketball games. I’ve been gone for over a year from Kansas City, and I haven’t lived here since I was 18. With the exception of short visits, and lots and lots of phone calls- I haven’t been able to spend significant time with my loved with in almost 10 years. Wow.
I returned home to Kansas City, and was saddened to hear one of my friends from my punk days had passed away in his sleep (what seems to be a severe allergic reaction). Ryan Beye was an important member of the music community in Kansas City, and his print shop employed several of my close friends. Although I wasn’t close to him by any means, I’ve known him since I was 13 when I started attending Underdog Conspiracy shows at local venues.
The memorial service was like a flashback to my youth, and the closest thing to a high school reunion for the music community I’ll ever see. It’s easy to forget where you come from, and how important your roots are to influencing the person you are today. Ryan was the kind of guy you were proud to know, and his generosity and giving spirit were indicative of the culture in Kansas City that makes it so special.
India has helped me refocus a lot of my efforts and remove a lot of elements that don’t really matter. I’m happy to be with my family. I’m happy to sit all day in my parents house, work on my pilot, and wait for homecooked food or the sounds of Patches barking to my father’s truck. It’s really boring. But India gave me a peace about being boring that I never had before. One year ago if you asked me to sit still for two minutes or stop being social I probably wouldn’t have been able to. I was addicted to being busy, and not in the productive way. But now all the questions have hit me like a ton of bricks.
How will I raise $100,000 for my pilot?
How will I legally raise this money?
Who will support me?
Am I ready to do this?
I am anxious and excited to see how the next few months will go for me, as time moves differently here than it did in India. There are no smiling watchmen or vegetablewallas screaming at me to get out of the way of their cart. The cows, noise, and colors are gone. It’s quiet, and almost placid here at my parents bright blue house with acres of farmland surrounding me. And now that I’m living at home, in many ways I feel like I’ve returned to my village, and many of the reasons I always identified with Indian culture- whether its my mom’s food, the gossiping church culture, overwhelming sense of belonging and community, and the delicate balance between finding independence from but duty to your family.
I am ready to do this.