Putting Flesh on the Bones of My Dreams

My life seems to be cluttered with half finished projects. A poster size map of the Inter Coastal Waterway, a book of architectural designs and master plan of a New Urbanism community, the twelve-string guitar I once knew how to play.

They were all so easy to drop, too. As soon as I have that picture in my mind of what it will look like when it was finished, I no longer felt the need to create it. It is finished in my mind and that is good enough for me.

Sometimes I wonder if this trip will become another of those projects. I think I have bitten off a little more than I can chew. Sure I have dreamed of going off to sea in a 25' Catalina, spending months on board, eating eggs and cantaloupe for breakfast for weeks on end, but can I really do it?

The dreams started my freshman year in college and have grown stronger and clearer just as my responsibilities and forays into adulthood have multiplied. But, lately, I've been wandering around in the thoughts that it was too soon, that I know too little, that I have far too many other things that need to get done.

Before, I had plenty of time to get it all done, over a year. Over a year to plan, to write, to learn. But now, now it is less than a year and I feel as though I am no closer today than I was five months ago when I started this crazy plot. If I keep on making so little progress, I would be beyond stupid to set foot on a boat and think had enough skill, enough knowledge to get it down the coast of the Keys alone. I was starting to feel like it would be another project scattered on the heap of failures I had accumulated over the years.

You see, I am a dreamer. I can live for months on end in a daydream, explore every inch of it, taste it, smell it, dance in the warm air it is filled with. And it sustains me. It sustains me when life pulls on me from every direction. It calms my spirit. It draws the tension from every muscle. It is my escape. So just how could I have been stupid enough to ask more of it? Why could I not leave it to be my respite?

Now, I have pulled it form my mind and settled it on firm ground. I have spoken of it and it has taken form. I have put a deadline on it. There are now real responsibilities tied to it. There are reservations to make, classes to take, funds to raise, a book to write. It is now out there. Out to be judged , out to be measured, out there to fail.

And that was the direction it had been heading. Destined for failure, for desertion. And, thus, the beginning of self doubt. It crept in slowly, undetected at first. I noticed July pass, and the thought that I had less than one year. August brought with it a total lack of headway on the book. Summer passed and with it all of my free time to get some sailing in.

September passed and those warm dog days of summer sailing, too. October, with my birthday excuse to get some time on the water, gone. November was creeping steadily by.

Soon New Year's would fly by with only half a year to go, and no progress would be made. And then sometime in late May, I would be making the decision to put it off for a year. Life would creep in and dissolve any last bit of momentum I had.

A few years would pass and I might see someone I hadn't in a few years and they would ask, "How'd that sailing adventure go? Was it just the greatest thing?" and I would have to explain away my failure, make it seem like I was just being resposible, I didn't want to take a risk like that, my kids needed me, I wanted to feel more prepared.

I had almost resigned to this new direction. Until I got the email from Frank. He was making a trip to Catalina late in the season to take advantage of some of the rougher weather. He was looking for fog and rain and wind. He wanted to explore the bays and coves of the backside of the island, anchoring out and enjoying the uninhabited views. He wanted to teach.

And for once everything lined up perfectly. He just happened to be going on my Thanksgiving break. My dad had just retired and was able to take the kids on a weekday. Shea and Eli had grown enough to enjoy a weekend at Nana and Moe's (not a bar, but their grandparents). Tony had some plans for the weekend and was due some time to just be a guy again, without a wife and kids to worry about. My birthday had just brought a bit of a bounty to pay for the trip.

It was a trip perfectly designed to teach me what I needed to know, how to anchor in small bays, how to use GPS blinded by fog, to navigate by chart, keep a log. Everything I need to know to enjoy a trip down the Florida Keys, navigating on my own, finding bays and anchoring for a light lunch and a sun-drenched swim.

It gives me a chance to work out the minor details I might not have figured out the first time around. Do cell phones work out there? Can I hook up a GPS to my phone so my family can track my position form the comfort of their home? Can I reasonably plan a phone call home at the same time each day? How fast is the internet connection a marina promises to supply?

It, also, gives me the perfect chance to try out some new protocols for how I am going to deal with Diabetes in a whole new environment. How exactly does my need for insulin change by sitting on a boat all day? How will I find a way to exercise on board? I don't think running 7 miles on a 25' boat will work out too well. And how does a wet, marine environment affect things like blood glucose test strips?

I am not used to self doubt and I don't like it. I am usually a pretty arrogant little creature. But I think that a plan that causes me to doubt myself just might bebig enough to challenge me. If I know from the start that I will accomplish it, it is not big enough, not even worth a try.

But if I doubt, it is probably right there on the edge of what I am capable of. And that self-doubt will be just strong enough to make sure that I am prepared, that I have covered every angle, learned all that I can, and have prepared my brain and my body so that I might have a chance of actually doing this thing, so that when I am 80 and finally learn that the big C will finish me off soon, I can sit back satisfied knowing that once, when I was but a wee girl, I did something at the very edge of possible and now I am convinced of what I am made of and it is certainly more than sugar and spice, and everything nice.

July 2010- The Plan

So here's the plan...

July 2010. Fly into Miami, grab a car and drive to Marathon, about halfway down the keys. Check Continuous Glucose Monitor to see how sitting still for 6 hours has affected my blood sugars. Adjust accordingly. Find a place to stay and get some grub at a nearby eatery.

Bolus.

Try to find an internet hookup to update blog, revel in the fact that most people down here are too busy living real life to worry too much about having internet connectivity in every possible location at every possible moment. Think about moving here for that very reason. Walk back to my shack. Stop in amazement at a sunset over land. A new thing for this west coaster. Get some sleep, probably the last I'll get for a while. Morning of Day 2, calibrate sensor so I get good readings on my CGMS, go meet Pagan Charm, my 27 foot Balboa that will be my home for the next 4 days, get familiar with the boat. Load the food for the trip that has become both my savior and my tormentor. Set sail. Play around with my basal rate to try to get it to match the change in activity that you make when on a boat. First stop, Big Pine Key. Anchor, check out Key Deer, smallest deer around, looks more like a small dog then a deer. Take pictures. Get some pizza, bolus, and return to the boat. Change infusion site which involves ripping off the previous one, filling a new cartridge with insulin, jabbing a new needle with new infusion set into my upper buttox, priming the system and then hooking up the quick release system. Watch sunset #2. More pictures. Sleep. Day 3 to Key West. Eat at Margaritaville on Duval St. and mark off one more on my bucket list. Maybe hit Hemingway's house and a couple more tourist traps. More pictures. Look for that elusive connection to the web. Alone on board, enjoy another perfect sunset. Watch as the winds change. Check weather. Can I beat this storm home? There's only one way to find out (well, only one stupid way.) Pray. Leave anchor early, real early. Sail to Bahia Honda Key. Storm has failed to materialize, thank God profusely. Apply another coat of shelack, oh wait, I mean sunscreen, lie on one of the only white sand beaches in the keys (mostly just rocks on the shoreline there) increase basal insulin rates because I always need more insulin when I don't move for long periods of time. Flip over. Breathe. Flip over. Breathe. Swim back out to the boat. Barbeque the fish I just caught (I can dream, can't I?) Eat. Bolus. Watch sunset #4. Notice the slight variations from the last 3 perfect sunsets. Wonder why I keep missing these at home. Change infusion set again. Change CGMS sensor which involves a much larger needle (should be illegal to make needles this long and this thick.) Jab it in the other cheek, slowly remove needle to leave sensor still in there, wait 5 minutes, attach transmitter, make sure it is talking to Johnny (my pump), tape it down, wait 2 hours without any food, exercise, or insulin boluses, calibrate, go to bed knowing Johnny will be watching over me as I sleep and waking me if I get too much or too little sugar in my blood. Now if he could only fix me a snack at 2 a.m. when I am low and incoherent and looking for sugar in the middle of the night. Double check to make sure I have good sugars readily available. Try to take it all in, my last night on Pagan Charm. Wake to see a sunrise over the water. Been waiting my whole life for that one. One more off the bucket list. Leave early to get back to Marathon. Pictures, sea breeze, warm sun. Take it all in. Lodge it in my memory banks so that next winter when things get cold and things get hard I can pull it back out and revel, if but for a moment. Revel in the fact that I lived, and I lived with Diabetes. I never let it slow me down, never let it beat me. Return boat. Drive back to Miami in a Jeep, loving the thick air blowing by, fueled by the memories of a great trip. Jump in a plane and crash. Me, not the plane. Sleep the whole 6 hour flight. Come home and share with all the guys on Insulindependence.org the new data and management strategies I have discovered for everyone to apply next time they are out sailing. Experiment Finished. Conclusions positive.

Rebellion at Club Med

The last time I can remember packing them was early one Thursday morning last spring, before anyone in the house was up. My insulin pump had kinked up and failed to give me any insulin during the night and a night without insulin makes for one hell of a morning. My blood sugars had steadily crept up during the night, I was flying high around 500 when I struggled to pull myself from bed.

It was still dark when I made my way to the bathroom, thinking I might soon need it to empty my stomach, one of the side effects of going without insulin for a night. After accomplishing what I had set out to do in there, I made the decision to head to the Emergency Room.

Fortunately, on this trip I had a few moments to pack before driving myself for a brief stay in Club Med. I grabbed my laptop, a movie or two, my cell phone to give updates to Tony on my condition so he wouldn’t worry too much. And I grabbed my REI’s.

You see, my REI’s had become legendary in my house, so much so that they developed their own moniker. You know that pair of socks, the ones you got last year for Christmas from some relative, the ones that can change a miserable winter day into a sweet, comfortable winter evening with a cup of tea and a good story to lose yourself in. The ones that keep your feet dry and toasty when you lock your keys in the car on the rainiest day of the year two miles from any place that is still open that late. Those same sock are the ones you simply must bring to the hospital.

Mom always said to make sure you are wearing clean underwear in case you get hit by a car and end up in the hospital. I say, if there’s any chance that that seemingly normal doctor’s appointment might turn into a weekend stay, get the socks. When your morning’s plans change from ‘get the kids up and get ready for work‘, to ‘pack your ditch bag‘, grab them. When you are fading in and out because your doctor starts talking treatment options and survival rates, get the socks. The socks will save you.

That pair of socks is the one thing that will make your stay in the hospital bearable. When you’ve begun to feel like just another patient in your hospital issue uniform, when you start to resent the constant stream of nurses coming and going who only care about what’s written about you on some chart hanging on the wall, when you become just another diagnosis and another experiment for the doctors to perform in order to perfect their art of practicing medicine (odd that in a life and death situation they are just practicing, when do they actually do it for real?), it is then, and only then that the socks will begin to show their power.

And it not just about being incredibly comfortable in a chilly room. Or having some traction under your feet so that as you drag your IV cart behind you on the way to the bathroom and get tangled up in the multitude of tubes running up and down your body, you have enough grip to keep your footing and avoid another slip that just might add a few more days to your stay in Club Med.

Its more than that. It really gets to the heart of who you are. Even though you are going to be laying on a table, giving up all control by letting complete strangers slice you from ear to ear, cutting out whatever they deem necessary when they get there, and even though they have stripped you of every piece of your own clothing, every piece of jewelry, even down to your wedding band, and taken even your skivvies, they haven’t been able to steal your entire identity.

That little streak of rebellion that caused you to mouth off to your fourth grade teacher, to go to a University when the only socially acceptable place to go in your circle of friends was Bible College, and to pick up a sport that at the time meant you had to join the boys team amid all the sneering, that streak that was drawn at your birth is still there, and you have proof.

You have defied your doctors, and, yes, in but a small non-consequential way, you have stood up in a place that so easily strips you of every thing that is truly you, and shouted, ‘You wont take me alive’ (oh wait, bad thing to shout in a hospital), and shouted ‘You can’t take all of me. No matter what you cut, or poke, or threaten to do, you won’t cut out that part of my body that makes me uniquely me. You’ll never find it.”

When you finally do make it home, you’ve taken a few days on the couch not lifting a finger, and decide to finally get up and do something, you’ll start to unpack that bag. You’ll look down at that pair of socks that are in such need of a good wash, and you’ll laugh.

You’ll laugh that haughty laugh of a person who’s beaten the odds and fought your way out. You’ll fold them so gingerly, still warm form the dryer, and tuck them in the back of your sock drawer to await your next stay in Club Med and the next time you will count on them to pull you through. You might even say a quiet thanks.