Sunday, March 29, 2020

When the World Closed

~Going off-topic for the special circumstances in March. The journals can wait.~ 

There were inklings earlier, but we didn’t pay attention. Until my sib called with a drive to deal with contingencies of my elderly parents, when we decided not to come to the office again, and on that last day, when I scored the last dental hygiene appointment before their office closed down. Food shelves bare, the lone box of cauliflower pasta in the section, and the media exploded with toilet paper shortages. My work engagements were canceled, complicating my emotional and financial circumstances. I read posts from friends across the world, trying desperately to get home amid unpredictable travel schedules and uncertain information.

Then began the charts, the trajectories, the questions. Here at the end of the road in Maine, we felt safer as the bodies piled up in New York. I drew upon the emergency coping mechanisms, honed from Alaskan weather events, and Cambodian political uncertainty. Tried to stay certain in my strength, and bring in the Buddhist grounding of breath in turmoil.  

I organized the yarn stash and knit my way through stuff that was hanging around forever. I reconnected with old friends. I remained thankful for everything around me. The last two weeks in March passed as a brew of fear, isolation, and coping, hope for the future.

Sunday, February 23, 2020

Getting Started

I'm summarizing my old journals for as long as it takes.
Essay #1

As 2020 began, I finished the Year in Review, applied for and received my 50-year commemoration medal from Joslin Clinic, and wondered what was next for the blog. When I unpacked the boxes of journals in May of 2019, I made a vow to not move them to another living situation. The notebooks are in two large produce boxes, filled with spiral and bound, lined and unlined, chronicles of personal history that haven’t been reviewed since I went through the first phase a reflective purge in 2009. I spent over $100 to ship them by media mail from Alsaka to Maine, and they lived in the basement for a few years until I moved into my new place. They are piled up, now labeled by year, and gathering dust.

In this next year (and, perhaps, as long as it takes) I am going to read my way through them, lines and lines of boring, self-involved prose. I’ll summarize, and try to keep it interesting, engaging and universally relevant. It will be a slog, but after I’m done with each stage, I’ll have the opportunity to burn them in a righteous purge. Let them go. Reduce the baggage. 

My journals have largely been a friend, a standby kept alongside to collect thoughts, make lists, maintain resolution on goals (some of which have been on the agenda since my 20s) and process through any of the things I was experiencing at the time. For much of the pages, there is a lot of introspection and inward processing, all the nights I spent drinking, or on the road, or otherwise talking to the page. While this is an important function, I’m not sure it makes sense to move them again. 

The first journal I have is from 1975. I’m not sure what was real or what wasn’t, but in the sporadic pages, I  mentioned running away from home, about fear of menstruation, about not fitting in and difficulty in making friends and of others that were really good friends, of boyfriends (largely imagined), and discovering cigarettes. 

I started that secret habit (1975-2008 ish) when a friend and I purchased the said cigarettes from a vending machine in the BurgerKing in a small commercial hamlet within a long bike ride from the house. The journals triggered the awkwardness of Jr. high and the uncertain discomfort of early adolescence. In reviewing the letter to a friend written during a Thanksgiving trip to Hawaii with my family and grandmother in 1978, I used the word “mint” to describe good experiences. The journal helped me remember buying a green T-shirt that said: “smoke Hawaiian” (looked good with my tan), went through our ten-day trip to Hilo to Kona, to Ioa valley to Kauai to Waikiki. There,  my sister and I (15 and 13) walked the beach at night and accepted an invitation from a quiet Native guy to smoke joints while sitting on the sand, an experience I still remember. 

With this first review, the first odd bits of this project is done. Those journals have from the bookshelf to the paper bag, ready to be destroyed. Now, onward to the 80’s.

Sunday, December 15, 2019

What Happened at the Beginning

~This is the tenth chapter of my year-long exploration of
living with Type 1 diabetes for 50 years. This is the last in the series. ~

It wasn’t until I was teaching English in Thailand that I finally understood how young I was at 7 years old. That’s when I was diagnosed. It was so simple: a moment that I wasn’t feeling well and didn’t want to go to school. My mother, presciently made me pee in a cup before packing me off to the bus. My dad picked me up at school, a highly unusual circumstance, and told me we needed to go to the hospital. The sky was clear in the parking lot. I can’t remember if he hugged me. But I know, eventually, I got in the car, went to the hospital, and my life changed. 

There were tests. I was admitted for two weeks until I got stabilized. I was taught new skills and practiced using syringes, filled with water, on oranges. I was rehearsing for how to insert the short needles into my body. I was presented with a comic book that cheerily compared my body to a car. Insulin was the gas that allowed my body to process sugar. Clearly, if I wanted to live let alone arrive at any destination, using insulin was my new reality and injecting it was the only solution. 

When I returned home, the shelves were cleared of the stuff that would escalate my blood sugar to unsafe levels. The family adapted. Then, just a couple of weeks later, I was in the kitchen alone when the turkey roast my mother had placed in the oven was done. The timer buzzed and through the glass on the black door, I could see the fat bubbling up from the meat. I decided that I would help. At the moment that the roast tipped, too heavy for my small arms, and spilled the hot fat on my wrist. In searing pain, I knew I, once again, had caused more disruption. 

I was back in the hospital, now in the burn unit. The skin was lifted from my butt to heal the tissue and I needed to stay face down on the bed for a couple of days until it healed.  In the hospital for another three weeks, I remember now an indelible moment. I looked out on the lights of the city below and called my mom in the suburbs just to say hello. That deep, dark longing to be back at home, normal again. When I finally returned to home and school, still bandaged, everyone else knew how to read a clock. I needed to catch up. That’s when the whispers began. I was different, something had happened. There was something more than the bandage, but no one could see.

The next summer, I went to a camp for diabetic girls. There were regimes at the camp. We were forced to collect our urine in large numbered plastic containers, stacked up in varying shades of yellow on a shelf near the bathroom, eventually analyzed but without the results shared with us. One year, I returned with a small bald spot over my forehead from twisting my hair out from the roots. There was a big barn with a huge trampoline and a pond where I learned to inflate my pants as a floatation device and collected the Red Cross swimming achievement cards. 

Despite those glimmers of community with girls like me, there were differences in the remaining 50 weeks of the year.  It was just clear that I couldn’t eat like the rest. Birthday parties involved negotiation with parents. Each overnight outing with the Girl Scouts required my mother’s diligence. By the fifth grade, it appeared that I was isolated. What I remember is that the teacher took me out of the classroom and finally explained to the other students what I needed to do to live. They were nice to me after that, in a fake nice way, somehow things hadn’t changed that much. 

My seven- year old self is still present today, of course, always wondering if my life path evolved the way it did because I live with diabetes. Or, what would have happened if I had more challenging symptoms or made any number of worse choices. 

In this 50th year, I am still alive with relatively few complications. I am strong, moving forward with whatever path remains in the years ahead. I am a survivor.

Friday, November 29, 2019

That Time I Almost Died

~This is the ninth chapter of my year-long exploration of
living with Type 1 diabetes for 50 years.~

My good fortune is not an occasional coincidence or winning the lottery. My kind of luck is a steady force, propelled by an unsettled life of testing limits and pushing boundaries. Often that brings me to the right place at the right time. After living with diabetes for nearly 50 years, I’ve beaten the odds. It is not uncommon for Diabetics to be blind, have lost a foot or a finger from poor circulation, to be suffering from cardiac ailments or liver failure or depression. I’ve had a few rough knocks, but who hasn’t?

Perhaps part of my fortuitousness comes from pursuing the things that I love to do despite the challenges of managing the extra burden of balancing daily medication, exercise, and food.


He asked me to come with him. “You can do it.”, the Boyfriend murmured in my ear as he nuzzled my neck. I was nervous. This was our first big outing as a couple, after a number of day-long ski trips together. He was currently not working, happily living off savings until he found the right fit. I had an intense job. There was always a negotiation with my work demands, flexibility and priorities.

With a steady job with decent health insurance, I’d started to use an insulin pump a few months ago. The small machine delivered insulin through tubes and cannulas that were placed under the skin. I was not sure about this technology, but I’d decided to try. This trip was the first run with it. 

Map of the proposed route 
After more discussion with the Boyfriend, I decided to go. I prepared the skis, sled for supplies, clothing, and contingencies for a four-night trip across the Resurrection Pass in the southern end of the Chugach Mountains. There were public use cabins for each night. The long days of spring season light, snow and relatively warm temperatures were inviting and exciting. I was on the edge of my abilities, but I was strong and determined. It was the four of us- the Boyfriend, his stoner, bipolar athlete friend and the Stoner’s beautiful, fit and petite girlfriend, and me. I was out of shape, clearly out of my league.

We headed up the long slow slog uphill. Very quickly, I had to adjust my clothing and remove layers when I started to sweat. I reduced the amount of insulin delivered by the pump, realizing that the exercise was going to be taxing. Even from the start, it was hard to keep up. My skis weren’t as good as the others, I certainly didn’t have the experience.

Within two hours, my gut felt twisted. The Stoner got impatient, clearly tired of waiting for me to catch up and getting chilled in the process. Finally, they pushed on and left me and the Boyfriend to catch up. I took a minute to check my blood sugar, warming the meter in my armpit first. My blood sugar was high, but I felt that was ok. I took a sip of water. The Boyfriend kissed me on a flat part of the trail, darkness falling as we were surrounded by trees and hoar frost and deep silent space of the winter. The moon shone brightly. Then I vomited the water I’d just drank.

Not me- file photo

It was too late to return to the cars. I had to move forward to the cabin. The Stoner had gone out to gather large trash bags, filling them with snow to melt drinking water. I got settled into the space, stripped down and checked the blood sugar again. It was high but not crazy high. I delivered insulin with the pump. Checked again another hour later. Still high. Changed the pump set, ate dinner. More insulin. Stoner’s girlfriend was supportive and sympathetic. I was thirsty, feeling claustrophobic, the cabin was too hot. We played cards. As the night progressed, I ran outside to vomit repeatedly. In the quiet night outside the cabin, I found myself panting uncontrollably, then retching alongside of the cabin where I could see my pee holes, dark and ominous in the snow.

I was as sick as I had been my entire life. Consumed with doubt, mentally addled by the Ketone poison that was coursing through my blood. A lack of insulin and rigorous exercise created a firestorm. Instead of using insulin and carbohydrate to burn calories, my body was burning fat for energy. The ketones raged.  The acid burned my throat with each vomit. They don’t teach you how to cope with this. The rest of the group tried to sleep, while I was up at least once an hour, tormented by my body and worried about what tomorrow would bring, The gray sky emerged from the dark.

The Stoner grumbled about not being able to sleep. I was weak, exhausted, stiff. Every physical movement was laborious. My blood feeling thick. The glucometer simply registered “HI”, indicating that I was over 500 (normal is 100.) The long valley stretched below the small porch outside of the front door of the cabin. One could see forever in each direction, the mountains stretching out in front and behind. I inhaled a deep breath of clear crisp air. It was a new day.

In an instant, I noted small brown movements. A pack of 13 wolves moved below, a line and in bunches. At times taking small detours for play, they were on the move to points unknown. I opened the cabin door and silently motioned to the Boyfriend to come outside and we stood silently and watched the processing. The Stoner and his girlfriend were inside, obliviously packing. They were committed to carry on and leave us to make our way down the mountain.

I strapped on the skis and tried to take a deep breath before beginning to shuffle forward. Each step like molasses, overcoming huge inertia. My muscles were screaming, unable to move. I had to stop frequently to gather my energy to move again. Trying to move forward would be the only thing that would save my life.  The trailhead was 4 miles, but it was all an easy downhill.

We passed another cabin that we’d detoured around on the way in. The small group who’d stayed there milled about, chatting excitedly about the wolves and cheerily asking, “How is it going?”.  At that moment, I knew that unabashed honesty was called for.  “Not too good.” I rasped (my voice was hoarse from vomiting) “I’m Type 1 diabetic and I think I’m in ketoacidosis”

At that moment, a tall, bearded man looked at me deep in the eyes and said, “I’m an ER doctor. I can help you.” I wept with relief. His friends, nurses and others cleared out their cabin so that I could lie down. The doc came in and we checked the glucose again. The ominous result of “HI”. “You’ll get ten units to start”, he directed. “I’ll stay with you a bit to see how things go.”

Within an hour, my skin gained color again. In the second hour, the meter went from “HI” to 500, a good sign. Over and over again, deliver 10 units, check the glucose. A little Gatorade to replenish. “You’ve been through an internal trauma of some vital organs.” the Doctor said, “Your entire body broke down and poisoned itself.”

After another night in the cabin. I started coming back to life. The next day, we skied out slowly, I was still recovering equilibrium and confidence, but I was on the way to recovery. We made it to the car, drove two hours to his home. I continued to work on replenishing fluids. After about a week I was back to normal but changed forever.

While I’d thought that this experience would be a test for me, perhaps instead it was a test of a relationship that I thought could be lasting. We spent the rest of the weekend together, for the first time, in a haze of recovery and comforting. The relationship didn’t last longer than a year. I was not keen to have children. There turned out to be someone else with stronger chemistry. They married, procreated, moved from Alaska and then divorced. We’ve lost touch, but I'll never forget that experience.

Monday, September 30, 2019


~This is the eighth chapter of my year-long exploration of 
living with Type 1 diabetes for 50 years.~

My parents were triumphant in the success of the last weeks of August after their move.  They busily prepared for a trip to California for my dad’s professional work. My brother was going along for support. Bags were packed, their travel went off without a hitch. Over the next few days, my sister and I got text messages about how great their trip was going. Until it wasn’t. 

Dad fell in the marble-floored lobby of the hotel as they were checking out. Urgent care, then hospital, missed flights. Broken bones on both sides of his body and the logistics unfolding.  In the early morning hours when, with shuttles from my brother in law, the parents finally arrived home from their ordeal and went to bed. 

It was only then that it really began: dealing with all the family dynamics about the care to my parents, trying to maintain my billable hour income and the shuttle of moving from my apartment to the hospital/rehab to dinner with my mom and back to my own place. For three weeks. 

In this effort, one part of my current life purpose in this relocation to Maine was fulfilled. There was work to do, a role to play, and the gratitude flowed. It was a reckoning of my own sense of “payback” that brought me here. I’d lived away for so long, and there have been untold sets of worries and concerns that I engendered over the years. Compounded on all of this,  I’ve always felt that being diabetic was an extra burden for my family. 

There were extra expenses, things my parents did to help me feel better about myself. There were small secrets that the family maintained, like the sugared cereal that I’d found in the cabinet after coming home from camp, that created a space where I felt normal. All of their worry over the years, compounded by a long stage of vagabonding, fizzled relationships, and their perception of my sense of aloneness.

I have always had a lingering sense of feeling apart, disconnected and not like the other. Despite the outer pretenses that I’ve got it together: a great professional approach, connected community, and maintain a busy life with hobbies, I’m still feeling that I’m attending to an obligation with staying in Maine. I dream of what I would do with a life unencumbered, where I could make my way in a different landscape and with a low budget. 

There are tools that I can use~ meditation, a more active reading and less social media, keeping up with exercising and exploring, staying on the path to find the tribe~ but for these coming months, I am feeling myself settling into an uneasy pattern. Waiting.

Saturday, August 31, 2019

My Sweet Smile

~This is the seventh chapter of my year-long exploration of 

living with Type 1 diabetes for 50 years.~

When I have a choice, I will most always try the experience I haven’t had before. Thus, in August, a very kind Doctor with a load of credentials used a Laser Assisted Peri-Implantitis Procedure (LAPIP) on my front teeth. I’m hopeful. 

I wish I could tell you that I lost my four front teeth when an oar hit me in the mouth while running a challenging rapid. In fact, it was a slow burn, a series of circumstances, a tinge of neglect, and youthful misunderstandings that led to their demise.

It’s not uncommon for diabetics to have periodontal problems. There is a two-way relationship: diabetes increases the risk of periodontal problems by as much as 30%. The inflammation elevates blood sugars and in some cases, leads to the progression of kidney disease. 

My issues started young, with a diagnosis of trench mouth and followed by orthodonture, regular cleanings all throughout my childhood, not that many cavities. But now, when dental professionals take a look at my mouth, they are impressed by the level of “work” that’s been done. Crowns, bridges, fillings, and now implants. Earlier this year, the dentist decided a crown needed to be removed to deal with a cavity and it uncovered a bigger problem. It became clear that all the options for this are expensive. I’ve held off until I resolve the issues with my front teeth. 

The extent of my dental work is a badge of class privilege, a lesson I learned early as I made my way out of my middle-class suburban upbringing and into the world. In my first job out of college, as a street-based social worker in downtown Boston, I saw the ravages of the inability to deal with dental issues over and over again. The clients had access to the free dental clinic offered by the agency I worked for, helping with the recurrence of emergencies and maintenance. As an underpaid social worker, I needed to find
 From a story in the Guardian
about the UN special rapporteur
who visited West Virginia on his tour
of poverty in America.
This guy needed root canals
on every tooth.

I found the Tufts School of Dental Medicine in Chinatown. Rows and rows of chairs on the entire second floor. Rounds of would-be dentists hovered over before moving onto the next. They determined that the gums around my front teeth were failing, and they performed osseous surgery to reduce the gaps between the tissue and bone. There were photographs, documentation, and case study. 

Shortly after, I quit my job and started traveling. I’m not sure I understood what I needed to do to maintain my teeth, perhaps the directions weren’t clear or perhaps I wasn’t listening. After a year, I began to have problems. Two large swellings appeared above my front teeth which led to more evaluation, a referral, a treatment plan, and a decision to stay in Boulder while I dealt with the realities. I lived in my sister’s friend’s place, worked three jobs to save money. I was smoking at the time as well, which didn’t help. 

I met Dr. Jacque DeLormier, who laid out the plan. He pulled the front four teeth out and gave me a partial plate to wear. I knit him a sweater for most of the bill. My sister poked fun at me a bit, joking about how my IQ instantly went down when I took my teeth out. The Alaska magazine in his waiting room was my market research for exploring tourism companies to work for. After the winter in Boulder dealing with my teeth and the spring in Big Bend working on the river, I was hired to go north. 

The dental journey continued. I continued to smoke, a very bad idea. The partial was difficult to deal with in the field and I began to have fiery irritation on the roof of my mouth. After the partial plate failed while I was in graduate school in Boston 15 years later, I found a dentist who built me a bridge, connecting across my canines. Then, finding lovely Dr. Bunhean in Cambodia, who performed two implant surgeries, affixed crowns and dental cleanings for a fraction of the cost of what it would have cost me in the states. 

These recurring problems are traumatic. In stressful times, these are the first thing that begins to freak me out, carrying on the cycle over and over again. I have recurring, nagging thoughts that something is wrong has gone awry with the LAPIP, thinking now that instead of new tissue being regenerated in these early weeks, that once again I’ve sabotaged the best-laid plan. 

In response, I’ve begun to deploy is to think positively, reassure myself that everything is healing as it should. That there is a reason why I am here in Maine at this moment in time. Like diabetes, periodontal disease will be my constant companion on the journey of life, with complications that need to be managed, diligently and with each small step of healthy choices and routine.