Erin Spineto, a UC San Diego graduate, science teacher, wife and mother of two, works with the non-profit Insulindependence. As a type 1 diabetic determined to challenge herself, Erin set out on a solo sailing trip. She tells the story of her adventure and of living with diabetes in her memoir, Islands and Insulin, A Diabetic Sailor’s Memoir. Erin has shared an excerpt from her book with us, and as you read it, you’ll learn about her struggle, her ability to rise and overcome, and most wonderfully, her zest for life.
6 April 1996
La Jolla, CA
I close my eyes and I can still see that moment years before, when it all changed. It’s as clear as yesterday, and yet it seems a lifetime away. The symptoms were there, but they weren’t anything I really paid any attention to. Being only nineteen, I was not tuned in to what my body was trying to tell me. My time was spent ditching college classes and surfing and hanging out with friends.
I was never one to drink water, never really liked the taste. Apple juice, chocolate milk, Dr Pepper, now those were worthy of drinking. Water just seemed like a waste of time. But I started drinking it by the boat load, craving it really. I couldn’t sit through a Physics lecture without getting up at least three times to drink from the fountain (this was in the days before carrying a PBA-free water bottle everywhere was in fashion).
With all the extra water came all the extra bathroom trips. At least, that’s what I thought was causing my nocturnal wanderings towards the toilet. I tried to explain it away. It’s just the heat. It was spring and the weather was heating up.
As I got up for the third time to miss yet another section of the lecture, and was forced to drink out of that overused, under-cleaned shiny metal box of cooled tap water, I told myself the lecture was just really boring and I was looking for a way to stay awake. Physics was my favorite subject though, so I don’t know how I convinced myself of that one. Maybe it was just the best explanation I could come up with at the time.
To make matters worse, I was studying for finals in the thick of it all. I spent one evening with my roommate, Martha, at the food court on campus so that we would have easy access to the soda machine while we studied. I never developed a taste for coffee, so my study drink of choice was Dr Pepper. I must have had about eight, twenty-ounce drinks that night. And that wasn’t Diet. Diet was for fools. It was all real for me.
After studying that night, I couldn’t find a way to slow down to get some rest. I lay in that state between awake and asleep when thoughts run amok and you can’t control them and you can only sit and watch them run all over the place and make no sense at all.
My dreams that night were filled with Organic Chemistry equations. The kind where two types of molecules in their 3-D structure are blended into an entirely new molecule. They were converting over and over again in front of me, taunting me with every conversion.
I assumed the insomnia was due to stress and finals. The minor symptoms I was feeling didn’t register as the beginnings of anything serious until I was riding my bike home from school the next week and came to Hell Hill. Most of my runs and bike rides ended on this shady, tree-lined hill. It was only about a quarter mile long, but the incline made it a challenge. My goal each day was to ride to the top without being forced to stand up on the pedals. At the time I was in good shape and was making it to the top fairly consistently.
But not that day.
Half-way up the hill I was so weak and light-headed that I was forced to get off my bike and sit down for a few minutes. Normally it would have taken me less than two minutes to get home from that point. Thirty-five minutes later I was still trying to get there. I had to lean all of my weight on the bike to wheel my failing body home, stopping every few hundred feet to gather more strength. When I got home I sat on the couch dazed while my roommates tried to help. Martha came in first.
“Erin, you feeling alright?”
In the spring of 1996, La Jolla was the perfect backdrop for a wonderfully easy life. My parents were still footing the bill while I made my way through school. Classes were easy and the beach was close by. My last three years at the University of California, at San Diego I shared a three-story condo with six girls. Each year we had a different group of girls paying the rent. Every summer some of the girls would move out and new ones would move in, which made it the perfect place for me.
With that many people coming and going I could stay unnoticed, well-hidden. Martha was the only girl to live with me for all three years and one of the only ones who didn’t let me fade entirely into the background. She was consistent and reliable, not one to add drama to any situation.
“I don’t know,” I tried to answer. She sat down beside me trying to assess the situation.
I did my best to relay the story in my confused state.
“Maybe you were just working out too hard. Here have some licorice; maybe you just need some sugar.”
If she only knew that sugar was exactly what was killing me. I recovered after about an hour and moved on. I spent the next few days trying to explain away what happened. I was sick a week before. I wasn’t a hundred percent yet. I went too hard too soon.
I had no idea it was really the diabetes starting to show itself.
February 10, 2009
My fifteen-year high school reunion is quickly closing in and the only thing I have done since high school is to spend the last decade or so being ordinary. I now drive a minivan, have two kids, spend my days as a teacher and live in a small house by the beach.
Not that any of those things are bad; I really am enjoying my life. But my life was supposed to be something bigger, filled with great adventures and travel. It should have great moments of glory, like climbing a mountain or sailing the Seven Seas. Maybe even a little professional surfing.
I should have studied sharks and lived for months at a time on a research vessel. I might have my PhD. and teach at a major university. I would have done some great things. Instead I have become overwhelmingly average.
Anytime the reunion comes up, this scene keeps playing over and over in my mind. I run into old friends and time and time again have to answer the inevitable, “So what have you been doing for the last fifteen years?” Surrounded by doctors and lawyers, UN representatives and CIA agents, I will have nothing to tell.
My life is unremarkable. Nothing more or less than every other average American has accomplished. A few tables over a few guys from one of my classes will begin to chat. “Do you remember that girl who used to study with us in AP Chem?” the music manager will ask.
“The one who never actually studied and barely stayed awake in class if she decided to get out of the water long enough to show up?” the C.E.O. will reply.
“You know, I think she only came to study group to get us to do her work for her.”
“Karen or Mary or something—”
“Erin. Erin Roberts.” He takes a long draw from his beer. “Wasn’t she going to be a shark biologist or something?”
“I think that was Plan B, behind pro surfer.”
“She here tonight?”
“Nah. Probably still out surfing somewhere.”
“What ever happened to her?”
“Oh, she did the usual; grew up, got married, had some kids. She probably won’t show her face here tonight.”
That image has to change. I can’t go out like that. I need to do something to make those guys finish their conversation with, “But she woke up one day, looked at the cards she had been dealt and stepped up to the table to bet.”
I have to find something big. And quick. Far too many years were spent muddling through the ordinary. Now is the time to do something grandiose. Or at least somewhere closer to grandiose than where I am right now. And I have to start planning it today.
Saturday gives me a few hours off from Tony and the kids to find my favorite table in the courtyard of a market near the water in Cardiff by the Sea. On the table lies a book that I’ve been meaning to pour through, but I just can’t concentrate. My mind repeatedly wanders off into thoughts of what I can do to feel alive again, to leave behind the stone tied to my leg threatening to drown me.
Diabetes has been holding me under for the last few years. In the beginning, diabetes was a minor nuisance. It was nothing. My self-care had become, just like the doctors and nurses told me it would, like brushing my teeth. But thirteen years in, it overwhelms me with responsibility and fear and depression and I need to do something about it.
Growing up, I was always up for any sort of challenge. But now I am tempered, not wanting to push too hard. The fear and frustration of diabetes fences me in. It has slowly worn me out. I have to get back to the girl I was before all this diabetes shit started. The girl who feared nothing, except being weak. The girl who always accepted a challenge and was ready at any time to go on any journey that presented itself.
Of all the journeys I could take on, the Australian Aborigine’s walkabout intrigued me the most. When a boy is ready to venture into manhood he takes off on a journey to unite with the land of his ancestors, to prove that he has the skills and knowledge necessary to fend for himself. When he returns he has proven that he can be a valuable member of the tribe, one whom others can depend on and trust. He has had a spiritual experience that he can look back on as proof that he can handle whatever life throws his way.
That is the kind of thing that I need. It has been twelve years since the diagnosis. Diabetic adolescence has hit. I have gone through the happy-go-lucky childhood days, when my pancreas was not entirely dead and would at least help to regulate my sugar levels a little bit. It evened out the highs and lows. Those years passed quickly and the next three years taught me more of what diabetes does to a person. I was more responsible and knew the power the disease had.
The following six years brought on the usual teenage depression when everything was wrong and I was overly touchy about the subject. I am ready to move out of the teenage moody years and move on to adulthood when I can have a better outlook, more maturity and a healthy perspective on who I am because of diabetes, not in spite of it.
A walkabout looks like the perfect rite of passage to usher me into this new phase. The only problem is I do not have the Outback at my disposal and I wouldn’t know how to survive in it even if I did. What I do know is the ocean. And in all its vastness and danger, it easily rivals the outback.
The aborigine walkabout is done to merge with the land. The boy endures it and enjoys it, and it urges him to extend his capabilities as far as possible. I need something to allow me to become part of the ocean and something that would be just at the end of my grasp. I need a risky goal which calls for a major extension of my talent. A goal that I am not sure I can accomplish. One with an opening for the unknown to step in and test me.
I need to go out to sea.
Beyond the borders of the land, where my feet can no longer touch the shore, I can follow in the footsteps of my grandpa, Captain Jack, and sail into the horizon. I loved hearing his stories as a kid, and it is just about time I start stocking up on my own stories to tell my kids and future grandkids. To do this right, though, I need a long journey. And I need to do it alone.
The stories of solo sailors have always engrossed me. My desire to solo was first stoked by reading Close to the Wind by Pete Goss, and Godforsaken Sea by Derek Lundy. They both tell the same story of the 1996-1997 Vendee Globe race. It is a grueling, four month sailing race that pits solo sailors against each other as they race 24,000 miles around the world. Most races have sailors drop out or lose their boats. Some lose their lives.
In this particular race the competitors encountered a fierce storm in the Roaring Forties and Rolling Fifties, the latitudes around the bottom of the world where waves and winds whip themselves up, unencumbered by land to stop their growth.
Raphael Dinelli was wrecked in the middle of the storm. His boat had sunk and he was holding on to life in his little raft amidst icy air and sixty knot winds that whip the sea into fifty foot waves. His life was being sucked right out of him.
When Pete Goss heard the MAYDAY call he turned his boat around to sail into the hurricane force winds to save his competitor. He risked his life to head directly into the storm that he had spent the last two days trying to outrun. And he made that decision without hesitation. It is the way of the sea. When someone is in trouble you do everything you can to help.
That was a tradition I wanted to be a part of and I wanted to do it alone. Shortly after finishing the book, solo sailing a long distance went on my Someday-I-Will list. Now is the time to take it off the list and place it firmly into reality.
Now that the decision has been made to go sailing, I need to start planning. First on the list is finding a place to sail that is warm and safe. Warm because I absolutely hate to be cold and I love not wearing much more than a bathing suit all day long. Safe because I have a husband and a mother who tend to be scared by my adventures.
I know they will be reassured if I stay in the United States. This leaves San Diego where I currently reside, which doesn’t make for much of an adventure, or the southern portion of the Intercoastal Waterway in the Carolinas, Georgia or Florida. Captain Jack had come back from a trip down the Intercoastal Waterway and I loved hearing the stories he told. I would love to follow in his wake.
On the Intercoastal Waterway, I need to find someplace that has natural boundaries so that my starting and stopping points don’t feel arbitrary. After a quick glance at the map, I decide on the Florida Keys. One hundred miles of warm water, plenty of islands to navigate by sight, and a very end-of-the-road feel. You can’t get much more southerly than Key West.
I need at least a year to prepare for a trip like this. One of the many benefits of being a teacher is three months off in the summer to adventure. Next summer should be a great time to go.
13 April 1996
La Jolla, CA
The week after the struggle on the bike, I came down with another cold. One bad enough to really knock me on my ass. I had lived in La Jolla for three years and I suppose I should have had a doctor down there, but I was never sick so I never bothered.
This cold however wasn’t leaving and I was frustrated with missing class just to sit on the couch and stare at the ceiling of our television-deprived living room. I had no problem missing class to surf or lay in the sun, but to miss class in order to do nothing was starting to wear on me.
My roommate Christina was going up to Orange County to check out a grad school close to my parents house, so I thought it might be a good idea to catch a ride with her and grab some antibiotics from my doc back home to kick this stupid infection. My mom scheduled an appointment for the afternoon so she could take me in after she finished teaching her classes.
We sat down in the small waiting room and waited.
After about forty-five minutes, I approached the receptionist desk.
“How long do you think it will be until I can see the doc?”
“What’s your name?”
“Umm. Let me see.” She flipped through her appointment book as a puzzled expression spread across her face. “It looks like we just brought a family of three back. They were actually in back of you.”
“Really? So how long is it going to be now?”
“Probably another thirty minutes?”
“Thanks.” Back to my uncomfortable waiting room chair.
When I finally did get to see the doctor, he was rushed and barely looked at me. He performed the usual checks for a cold, looked in my ears and nose, stuck a stick down my throat and persuaded me to say “Ahhhh.” He concluded that with some antibiotics I would be fine. My mom then spoke up.
She turned on her assertive mode, listing off symptoms. Thirst, lethargy, weight loss. It was the first time I had heard of my weight loss. It turns out I had lost fifteen pounds over the last month without even noticing.
“I don’t know how that’s possible. I am eating all the time.” I added.
“You need to run some tests. It’s not just a cold,” she said.
The doctor agreed to run a blood test to see if there was anything he was missing – mostly to assuage my mom and possibly cover his own butt by warding off a lawsuit. He said he’d call if anything showed up.
Christina came by late that night to pick me up for the long drive home. I took my first antibiotic and didn’t give the doctor’s visit another thought. I was feeling good enough to go to class the next morning. I even stayed awake through the whole thing. It was the first week of classes, so as was my custom, I tried to make a fresh start and show up to all of my classes for the whole week, a rarity for me at other times during the semester.
I thought it was a bit unusual when my dad called two days later. My mom, the chatty one, would usually call. My dad only called when things were serious. “We got your blood work back,” he said.
Based on my symptoms, the doctor suspected three diseases: diabetes, cancer or leukemia. My blood work proved it was diabetes. Given those three, I’d take diabetes every single day of the week. Please. No problem. Whatever I had to do, it would not be a problem. Not a single complaint would be heard.
I was a proud girl, never one to show my weaknesses, hiding every crack in the facade. I was invincible, or at least that was the side of me I was willing to let show through. And that’s the face I chose to put on when the news came. It was the only face I was willing to let myself own at that point.
It would take my parents a little over an hour to make the drive from Seal Beach down to La Jolla to pick me up and bring me back to the doctor. I wandered upstairs and packed a few clothes, my toothbrush and stuffed my biology books in my backpack.
My roommates would have started a cry-fest if I gave them a moment, and I was in no mood for tears. So, I walked over to the boys’ condo on the other side of our complex to kill time. I knew they would be good for a few laughs and boy was I right.
After about forty minutes, knowing my dad would probably be even more prompt than usual and not wanting to keep them waiting, I cruised back home and sat down on the couch waiting for my new life to begin.
The first doctor’s appointment was a blur. The only words I remember were, “You have diabetes. Go make an appointment with an endocrinologist.” Why he couldn’t tell me this over the phone is beyond me.
We went straight from that appointment to one with Dr. Perley. His waiting room was full to the brim. And so once again we waited. I had no idea it would be the beginning of a lifetime of waiting hours on end to see doctors.
My definition of a good day: Wake up and put on a bathing suit and shorts. If you can make it through the day without having to put on shoes or a shirt, it has been a good day.
So when I first saw Dr. Perley late that night in his white orthopedic shoes, I wondered how long it had been since he had had a good day. He talked slowly with my parents and gave me the Intro to Diabetes lecture. He had me practice giving insulin injections to an orange and then he handed me my own kind of death sentence.
It was one of the only things that impacted me from that appointment. Maybe it was all the extra sugar circulating in my blood that was making me groggy or the whirlwind of appointments and information that come with a new diagnosis or maybe because the thought just shattered my concept of the world and my place in it.
He told me that now that I was a diabetic I could never walk barefoot again. Flip-flops were definitely out of the question. From the moment I got out of bed in the morning my bare feet were never to touch the ground. Gone was the slightly gritty feeling of the deck of a sailboat beneath my feet and the feeling of sand sifting through my toes. No more hopping from white line to white line in the parking lot in the middle of summer to avoid burning my feet.
My happy-go-lucky future was now strapped down and buried beneath my summertime nemesis, the dreaded shoe. I couldn’t even get away with going to my Plan B when society demanded some sort of footwear, the go-ahead, as Captain Jack calls them.
Lucky for me, I have a streak of rebellion running strong and wide. That one piece of advice I ignore. I ignore it just about every morning when I get up in the morning to feel the cold, always somewhat sandy, hardwood floor beneath my bed.
I ignore it before every surf session while making my way across the parking lot and later on the sand with all its hidden glass-shard land mines. And I ignore it every time I throw on a pair of heels when I go out with Tony. Heels were also outlawed by Doc Killjoy because they might hurt my feet. How a man could outlaw heels is beyond me. Weren’t they invented and propagated by man after man after man?
In this fight against diabetes you have to filter your advice carefully. You do your best and forget the rest. For me that was refusing to condemn my feet to the confining dark holes that we all call shoes.
After shattering my world and making me assault a piece of fruit with a hypodermic needle, Dr. Perley sent me home with the instructions to shoot up with three units of regular insulin and three units of NPH, or neutral protamine Hagedom, a long-acting insulin. It didn’t matter how much or little I ate for dinner or how high my blood sugars were at dinner, I was to take three and three.
In the normal human body, the pancreas perfectly matches the amount of insulin it releases to the amount of food you have consumed. Diabetics try to do the same thing by reading food labels and estimating or measuring our food. We then run those numbers through a calculator in our brains or our insulin pumps and come up with a pretty good estimate of what we need to counter the food we eat.
I suppose Dr. Perley thought this far too complicated to tell me before I left for the night. Even if he didn’t trust me enough with that new calculation, maybe he could have instructed me to eat a certain amount of food so that he could have done the math ahead of time and told me to eat a turkey sandwich and an apple, for example.
But instead he only told me to shoot up with three and three at dinner and then test before bed and call him with the results. He also gave me no indication that I should be taking more insulin if there was already too much sugar in my blood. Extra insulin is needed to tuck the sugar away into muscle cells.
Most diabetics develop a sliding scale for this calculation. For me it is an extra unit of insulin for every fifty points above one hundred. So, if I am one hundred fifty, that’s one unit. Two hundred gives me two extra units. There was no allowance for either of these most basic diabetes management tools.
My parents thought it would be nice to go out for a little dinner, since we had all had a long day, and none of us had thought about eating through this whole process, one luxury I would not have again for a few years. We went out to the little Italian place near our house and sat to digest all of this new information.
Lasagna and a hot fudge sundae were on the menu, and then we went home and fumbled through my first blood glucose test on my own. My dad and I had figured out enough in that small amount of time with the doctor to realize 533 wasn’t a good thing. I was only 423 earlier in the doctor’s office and they seemed concerned about that.
My dad wrote it into my log and called Dr. Perley. He asked for my latest reading. My dad relayed the information and hung up. My mom asked, “What did he say?
“He said he would meet us at the hospital in fifteen minutes.”