A Story of Becoming a Type 1 Diabetic

“The Wound is the place where the light enters you.”  Rumi

This is a story. As with all stories, it has a measure of truth, a good amount of interpretation and a point of view.  Each time I tell it whether in my own mind, to another or a group, it shifts in meaning, lessons and implications. There are an infinite amount of ways to tell it.  As a reader, you will add your own meaning.

Our minds are meaning making machines.

In 1974, my grandfather died. I heard the news from the backseat of my dad’s Ford Maverick while he drove me home from Napa Adventist Junior Academy, where I was in 7^th grade.

I grieved for a loss for the first time.

That week, my parents loaded my brother Greg and me into the car and we drove to Glendale, California to stay with “Mimi”, our grandmother, the widow of “Boppa”, aka Dr. and Mrs. Harold and Martha Beasley. Harold had killed himself by means of an overdose of prescription pain killers.  He was a doctor so the script was written in his own hand, on a pad he still had, even though the ravages of duodenal cancer metastasized into his lungs, heart, and brain had stopped him from practicing medicine for over a year. He sent Martha on a shopping trip and gave her a big enough list that she was sure to be gone for the time it took him to draw a bath, call his friend Wayne, and drift into the darkness of eternity. He made sure that it was not his wife that discovered his lifeless body in the tub. Wayne, his best friend, did what a good friend would do in this horror and took Harold’s corpse away before Martha came home.

Greg and I didn’t go to the funeral.  But we were there for the quartered cheese sandwiches, potato chips and 7Up served afterwards.  All we and cousins Mark and Vonnie wanted to do was watch “Creature Features” and fight over who got to be in charge of the “blab off”, the wired sound switch hooked up to the back of our Uncle Wayne and Aunt Ruth’s color RCA.

But Uncle Wayne interrupted us and told Greg and me to meet him in his room.  We thought we were in trouble and looked at each other as we often did when an adult asked us to go to a room.  “Who was going to get spanked?” We didn’t wish a whupping upon each other but neither did we want our own butt to feel the slap of a belt. But Uncle Wayne asked us to sit down and then spoke softly. This would somehow be worse than a spanking, I thought.

“Your mom and dad love each other very much,” he began.

“Duh!” I thought!  Anyway, what did he know about our family, this Uncle by adoption that wasn’t even related to us? And where were my mom and dad?  If there was something to tell us, why weren’t they telling us?

He continued, “But sometimes, two people who love each other decide to live apart.”

Things began to fall into place.  Greg and I were 14 and 10 years old. Neither of us had a complete understanding of all the dynamics, the dysfunction and the story leading up to this clumsy explanation by our Uncle Wayne.  But the overheard late-night fights emanating from my parents’ bedroom, the slamming doors, the long silences and the messages written on the bathroom mirror with my mom’s lipstick all began to make sense.

“Of course Mommy and Daddy will never get divorced” became the lie it was always feared to be. The long absences and late nights home by Dad were now coming to their inevitable conclusion.

After Boppa was buried and everyone made their way back to their homes, their lives and did what people do after someone dies (talk about the stock market and what’s for dinner), Uncle Wayne came up with the idea of a trip.  All the boys, he, my dad, Greg, me, and our cousin Mark would get into his brand new Cadillac and go to the Grand Canyon.

It was with terror I climbed into the backseat of the car.

I had already been sick for months.  No one knew but I was urinating every half hour, streams coming out by the gallon.  My thirst was unquenchable. There was a sickly flowery smell coming from my breath.  I would sneak out to behind their narrow easement behind my grandmother’s house and pee in the middle of the night, lest someone discover my shameful secret. I couldn’t stop peeing!  At 3 in the morning, I tip toed into the kitchen, silently opened the refrigerator door, pulled out a gallon of milk and poured it down my throat.  I lost weight. Somehow, no one noticed any of this.  And if they did somehow see I was thinner or tired or ill, they would comment, “He must be feeling bad because of the divorce.”

In Uncle Wayne’s car, I held in my pee as long as I could before asking to pull over so I could go to a gas station bathroom.  Again and again, I would ask.  My cousin Mark began to make comments.

“You sure go to the bathroom a lot!” he said.  Uncle Wayne (Mark’s grandfather ‘Boppy”) said, “Don’t tease Todd.”  I stayed silent, praying for the car to run low on gas so we would pull into a station with a bathroom where I could relieve my bursting bladder without having to ask to pull over again.  In the bathroom, I would drink straight from the sink faucet until my stomach could hold no more.

In my mind, the problem must be that I was drinking too much water which made me pee so much.  I didn’t think that my excessive thirst could be part of a more serious problem.

Somehow, I made it to the Grand Canyon without peeing my pants.  In front of us lay the immense geological timescape where humans could see the earth’s progress since prehistory.

All I could think of was “where is a tree I can hide behind?”

When it was time to go back, I was tired.  I couldn’t eat much and all the liquids I was drinking seemed to go directly to my bladder. I was always either taking a nap or peeing.  I dozed off somewhere in Arizona, even as I was desperately trying to hold in my pee.  I woke up to Mark, screaming in what seemed like glee, “Boppy, Todd’s peeing in the back of your brand new Cadillac!”

Sure enough, a cascading flood of warm urine was dripping down my legs, soaking my pants and ending up all over the back seat and the floor of Uncle Wayne’s used-to-be-new-car-smelling carpet.

I melted in shame. But even in my shame, it felt so good to just let go.

“Don’t worry,” my dad said.  “It happens to everybody once in a while.”  But I was envisioning a life where this happened to me all the time.

We made it back to Glendale, California and my mom, dad, Greg and I flew back home.  I must have been getting worse but I wasn’t urinating as frequently or as thirsty.  But I was still losing weight and very weak.  Mom, Greg and I went back to our home in Napa and Dad went to his rented house in Fairfield. A few days after returning, my mom packed a few suitcases and announced, “We’re going on a vacation!”

Later, I found out that she didn’t tell my dad, or anyone else, where she was going, or that she was taking us. That night, we checked into the Holiday Inn in Monterey.  I became even sicker.  The nauseatingly sweet odor from my mouth now reeked from every pore of my body. I couldn’t eat.  My ribs were racked with pain.  I slept all night and most of the day. We might have been there a few hours or a few days.  Or was it weeks? I can’t recall.

I vaguely remember a nurse coming into the hotel room. Then the bellman, his nametag “Orlando” in front of my eyes as he carried me to my mom’s gold Ford Maverick and laid me down in the backseat.  Looking up at the sky out the window as I slipped in and out of consciousness. Pines and Cypress trees whizzing by as we hurtled through the curvy road in the seaside forest of the central coast.

I heard a siren.

The car stopped.  A policeman pulled me out of the car and handed me to a doctor.  I woke up on a table.  The doctor pressed into my rib cage. “Does that hurt?” he asked.

My agonizing scream answered him as I blacked out.

I woke up to see 6 tubes running into my three left arms.  When I saw my mom’s three faces leaning over my bed, I recalibrated and deduced I must have two tubes going into my single left arm.

“Thank God you’re alive!” she said.  “I’ve been praying all night.”

I was clear that my mom’s prayers had no impact on whatever happened.  I was clearer than I’d been in my brief 14-year life.

“I chose to come back,” I said.

In the summer of 1974, I became a Type 1 diabetic. My genetics, combined with trauma of my grandfather’s death, my parents’ divorce and my mother’s behavior, along with environmental and nutritional effects, led to my becoming ill with an autoimmune disease where the beta cells in my pancreas stopped producing insulin and I had to inject it. According to many “experts”, I would most likely end up losing my feet, going blind and suffering from all manner of neuropathic and vascular issues.

Well, that’s one story.

Each member of my family has a different version of what happened.  For example, my mom told me yesterday that soon after she had checked in to the Holiday Inn, she thought it would be nice to take Greg down to the hotel pool.  I was sleeping. She sat in a pool chair next to a woman while Greg played in the shallow end. She told the woman that her other boy, Todd, was upstairs and wasn’t feeling too well.

“I think it’s because of the divorce,” said my mom. “He’s just not himself.”

“What kind of symptoms is he having?” asked the woman, adding, “I’m a nurse.”

My mom told her about the shortness of breath, the thirst and constant urination.  The lethargy.

“Would you like me to take a look at him?” offered the nurse.

Here is how my mom told me the rest of the story:

“She went up to the room and looked at you.  She said, “You get this boy to the hospital now. Immediately!”  I called the front desk and talked to Ron, the hotel manager.  He came up to the room, picked you up, and carried you to the car.  He got in his car and said, follow me.  I drove, your head was in my lap and you were writhing in pain.

“A cop stopped us.  I said, we’re going to the hospital.  The cop took one look at you, said “follow me”. He led us at up to 100 miles an hour.  The cop called the hospital so they were ready and the doctor met us in the ER and took us into an exam room.  They told me you were in a diabetic coma.

“After a few hours, someone came out and said, “We lost him.  We lost your son.”

“Another doctor came out a minute later.  Someone yelled out, “I think we got him, I think we got him back!”

“They got you stabilized and pushed you out to a room with a bed.  You were writhing in pain.

“I stayed all night with you, praying, in the room.  After a while, your pain subsided and they stabilized your blood sugar. You woke up the next day and I knew it was a miracle.  You didn’t think so but I knew it was.”

My brother’s story included swimming in the pool one minute and watching his brother being carried away as his frantic mother ran beside him while he remained behind with strangers in the hotel room next door.  He was 10-years-old and didn’t know where they were going or if they’d ever come back.

Things happen.  We tell stories about them.  We interpret those stories. We make decisions based on those interpretations. We create our world. I tend to be more open to miracles, these days. At the very least, I give thanks in deep gratitude for the nurse who decided to go sunbathing at the Holiday Inn, Monterey pool that day. Maybe there are angels, maybe there aren’t.  But I am calling her one. Her, and the policeman who escorted us to the hospital and called ahead so that they would be ready for me.  And Dr. Barry Gendelman, one of the leading Endocrinologists in California, who was visiting that month and saved my life.

How about this for a story?  We are all beings of light and love.  My Type 1 diabetes has led me on a lifelong journey of hope, hopelessness, healing, despair, love, loss of love and learning to love again.  Without my T1D, I would not be who I am.  And I love who I am, in all my strength as well as my weaknesses. I love my life. It is so full, joyous and beautiful.

I chose diabetes. And I choose it still.  I am grateful for the many gifts it has given me.

As I am grateful for the gift I bring to the world. The gift of light, that shines brightly through my wounding.

As the light shines more brightly, the wounding disappears.

Pre-order “Take Off Your Socks – Disappearing Type 1 Diabetes” by Todd Lejnieks (copyright 2015 by Todd Lejnieks)

Holiday Inn, Monterey, CA poolside.