An Excerpt from Islands and Insulin- Second Installment

10 February 2009

Carlsbad, CA

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.

Plan B Book

I have two sides to my personality, one that likes to fly free, moving on every whim of desire and taking every opportunity as soon as it presents itself, and the other, which is my practical side. It’s my practical side that likes to prepare and research and plan for every possible obstacle.

Single-handed sailing through the Florida Keys this February will provide a place for both sides of my personality to work together as one unit. While at sea all alone, I will be free to change course, to get a closer look at an island that catches my eye, to slow down and follow a manatee eating lunch, to find the craziest, out-of-the-way dive bar to grab some hot food and recharge my batteries (both my actual batteries- cell phone, laptop, GPS, and my more figurative batteries-, a friendly face, stable ground, and a warm meal). But because of my diabetes, I will need to do a great deal of behind the scenes planning and preparation before I ever set foot on that boat.

One of my latest preparations is writing my own emergency manual, my Plan B Book. For the non-diabetic world this might consist of a first aid manual and the number of the Coast Guard.

For me, it is a thirty page book organized from the most extreme emergency to the least. If I need major medical care (short of a call to the Coast Guard to bring in the helicopters and rescue divers), I will need to get myself to a hospital, which is easier said than done. If I were on a typical road trip, I wouldn’t even bother to find the names of any hospitals along the way. The amazing 911 system takes the hard work out of it. Simply call, tell them where you are and in a few minutes you’re safe.

On a boat, it is a whole new game. You can’t exactly pull the boat up into the hospital parking lot and jump out to find a nice orderly waiting with a wheelchair. Thus, my creation of the Plan B Book. The first pages are for every hospital and emergency medical center in the Florida Keys. Each page includes a map of the hospital and at least three docks nearby.

For each dock, I need the longitude and latitude, address to give to the ambulance driver, the phone number of the dock master so he knows why I am crashing at his dock, and in case I can’t contact an ambulance, the path I would walk to get to the hospital.

After that, follows the plans for the mishaps. The “I forgot to pack my Symlin,” or the “Oh crap. I just dumped all of my test strips into the ocean,” or the “I never even thought of what the Florida heat would do to my insulin” mumbled as I roll the insulin bottle around in my hands and notice that the once clear liquid is now chunky and white.

So in the next few pages are the addresses and phone numbers of every pharmacy in the Keys, all five pages of them, divided by region. And just in case there is not a single one who will transfer my prescription (which of course I have every one listed with the prescription number and phone number of each pharmacy who holds the prescription), I have the number of the only endocrinologist in the Keys in case she might take pity on me and give me one of those free samples of insulin or strips or whatever it was that I ruined, or lost, or forgot.

My preparation goes far beyond the Plan B Book, too. It covers knowing that things happen: airlines lose luggage, I lose my mind and forget to pack things, electrical systems on a boat can break and leave my fridge as nothing more than a cheap cooler without any ice packs to keep it cool. So I pack multiples of everything I need and I pack them in multiple locations and in multiple contraptions.

I pack four blood glucose meters, one in each backpack, one in a waterproof Otterbox below deck and one in my ditch bag, just in case. I bring six vials of insulin, enough to keep me alive for five months, and hide it in all of the same spots as the meters and two more in the fridge.

I pack my insulin pump, my old insulin pump, a loaner insulin pump from Minimed, and even needles (which I have not used to inject insulin in the thirteen years I’ve been pumping) in case all three pumps break. I bring Nick, my preferred Dexcom CGMS with his extra sensors, and Johnny, my back up CGMS system, with his extra sensors.

My bags will be so full with back up diabetes supplies, I will only be able to fit one swimsuit and one pair of shorts into the remaining spaces. Looks like shirts will have to wait for another trip.

After spending countless hours thinking of everything that can go wrong, and five ways to fix each problem, after packing and repacking to get all the extra equipment, equipment that I will probably never even use, to fit into my two bags, and after spending time typing up and printing my Plan B Book, I can shut down the practical side to my personality and fully embrace my footloose and fancy free side because I know all of my bases have been covered, and a few extra ones at that. I will be able to fully focus on the beauty in front of me, the one hundred miles I have to cover, and the diabetes that I will be conquering by not letting it stop me from living my dreams.

Diabetes by the Numbers

252 - Last blood sugar reading 684 - Highest blood sugar on record- although it may be a bit inaccurate since the new meters don't go higher than 599 28 - Lowest blood sugar on record- They say you're supposed to pass out at 30 102 - Favorite blood sugar- high enough not to worry about lows and not the "perfect 100" that everyone else strives for 15 - Pounds dropped at diagnosis 19 - pounds gained after starting insulin 8.3 - Last A1C blood test 5-6.9 - "good" A1C range 7.0 A1C I want 5.5- A1C that I would "shit bricks" over 9+ - A1C that makes me cry 36 - Number of A1C test results I have had to endure 8 - Mini boxes of candy I had last night on Halloween 10 - how much I hate Halloween on a scale of 1 to 10 because of the constant temptation of packages of candy just small enough not to register on the "to avoid" list

1,460 - Number of shots I took before giving up the shots and getting an insulin pump, never to look back 42,340 - Number of times I have sliced a tiny hole in my finger to extract enough blood to give to the machine who will grade my diabetic efforts for the last few hours and give me a result that will either make me smile or make me curse, but either way will better inform me of my enemies tactics and how I can outsmart him. 2,867 - Number of curse words spilled from my mouth in reaction to diabetes 1 - Number of entire boxes of Rice Krispies almost poured over my head in a state of low blood sugar 528 - Number of crying spells brought on by my enemy 2 - Number of E.R. visits due to freakishly high blood sugars 1 - Number of official D.K.A.'s because a box of recalled pump infusion sites got out to me and happened to get used at the same time I was battling the flu (and yes I am pulling out every reason in the world that this one was NOT MY FAULT) 2 - Number of crazy docs who thought they knew more about my body than I did and set me up to do or believe down right stupid things like I would never be able to walk barefoot or that to have 7 different basal rates on a pump is "not necessary" 3- Number of amazing docs who know I live with my body and my enemy daily and who work with me to sharpen my battle plan, who give advice on new research, new tests or new technologies to fight the bastard 14 - years I've had diabetes 12 - years I spent trying to battle diabetes on my own 1,000's friends I feel like I have through Insulindependence.org who help lend support and comfort as we fight together 20ish- the actual number of friends I have made through Insulindependence, though their support makes it feel like more 764 - the Number of times I've said to myself, "Now why didn't I join Insulindependence sooner?" and replied to myself, "Oh, Yes, That's right, they've only been around since 2005!" 864,357- people I wish I could tell to become a part of Insulindependence- It will change the way you attack the enemy 62 - boxes of pump supplies, glucose monitor supplies, sensors, tapes, I.V. Prep, glucose monitor strips and other assorted supplies in my closet/pharmacy 42,120- used blood glucose monitor strips I've sent to the landfill 24 strips currently in various crevices in my car 56 strips currently in my wallet/monitor case 138 strips in the trashcan in the bathroom 2 strips in my running bag 33,476 words written in my slightly humorous (but only to the warped minds of the world) memoir on life with diabetes and sailing solo through the keys 16,534 words to write by November 30 to be a winner in the NaNoWriMo or the National Novel Writing Month 551.13 words per day to write to meet that goal 665 words written so far today, oh wait make that 674. 16 Times I've said since I committed to NaNoWriMo last night, "Oh Crap! How am I ever going to be able to pul this off?" 14 sailing books I own and have read- most of which end in hideous disaster and ruin 3 boats I own, though the largest of the fleet is 15 inches long and attached to a stand so it doesn't tip over on my desk 12 - number of feet of the boat I will build this Spring Break 2- number of children who will help me build it 22- feet of the boat graciously donated for me to use for my trip this February by the Key Lime Sailing Club, my favorite sailing club in the world 4- days I will spend sailing alone int he Florida Keys 100- nautical miles I will cover from Key Largo to Key West 480- GPS waypoints beamed to the satellites and then back to mapmytracks.com where anyone can follow along as I sail 168- messages sent to the social networking sites to update everyone of everything I am doing, seeing, hearing, smelling and eating along the way 7500- dollars that I am trying to raise to benefit the oceanic recreation branch of Insulindependence.org 765- dollars I have already raised (thank you, by the way, to all those amazing people who have helped out in this) 105- days left to raise the additional $6735 64.14 -dollars to raise each and every day until I sail 872- times I have said "Oh Crap! How am I ever going to be able to pul this off?" 4696 miles to fly 63 miles to drive 5 sunsets to watch 3 manatees to talk with 82,354 skeeters to avoid 459 pictures to take 152 minutes of HD video to take so I can edit it down to the 3 minutes I am not looking like a total dork 6840 minutes I will be truly enjoying myself as I seek to take some time away from my everyday life to reflect on what diabetes has done to my life and what the fight against letting it take over has done for my character and my life 40,000 words I will have left to write to finish the memoir expressing those new revelations I am sure to have while spending 6840 minutes alone on a boat in the middle of the sea (well, ok, maybe not the middle of the sea, but far enough away from land that it will feel like the middle of the sea) 17 minutes I have just forced you to read far too many numbers 63 useless numbers that have now been stored somewhere in your brain taking up valuable space that could have been used to remember your telephone number when you move into the retirement home when you are 89 1 person you have now far too many unrelated details about that may come together to form a slightly clearer picture of (sorry Mrs. Fullenwider for ending that one with a preposition)