Planning for fear

Last week I entered a time capsule. It was dark, damp, and cold as we prepared dinner after hiking into a fog so dense that I was shocked when we came to the fork at the base of Sam’s Knob, left to the creek and right to the summit. We had crossed the entire field in front of the mountain without once seeing its mighty figure in front of us. We headed left towards the creekside campsites that I remembered from many years and times before. In fact, I camped beside Flat Laurel Creek during my first ever backpacking trip. That trip, maybe ten years earlier, had started much the same way – with a rainstorm forcing us to pile on every layer we had brought within the first few hours. This time, turning off the parkway and into the parking area for Sam’s Knob, we were the only car save for one. The two guys in the other car were milling about while we worked with raincoats and pack covers to protect ourselves from the intermittent rain showers that threatened to soak us and our gear before we began. They, young, clean, and looking a little lost, wandered over and asked, “Hey, would this be a good time for a hike?” It was chilly and windy, nearly 6 pm, raining lightly, and there was surely standing water in the trails. “Absolutely not,” I said. “This would be a miserable time for a hike,” as my hiking buddy continued to layer and arrange our supplies. “You should come back tomorrow,” I concluded, as we hoisted our packs. “It will be beautiful then.”

That’s what we were banking on anyway. We’d delayed the trip by one day, hard for me once I have my mind set on the woods, but it promised to be a better plan. While it had been raining for the previous day and night, sun and clear skies was forecasted. All we had to do was stay mildly warm and somewhat dry until morning.

I started this blog years ago, inspired by the lessons I learned about diabetes management and myself while backpacking. It diverged, first into kayaking and other outdoor adventures with diabetes, then into topics like acceptance and identity transformation. As I’ve gained experience and had successes problem-solving around unexpected moments with diabetes, like a malfunctioning pod moments before boarding a plane, insulin that overheated in another country, low blood sugars alone, and other occurrences that throw the brakes on every other priority you thought you had, these same moments become less noteworthy. It’s been more likely in recent years for diabetes to surprise me in a philosophical way. So, when I stuck a test strip into my meter to check my blood sugar while simultaneously tending the pan of lentils and rice heating on my little MSR camp stove, I didn’t just see the message, “WARNING – Temperature too cold. Out of operating range. See Owner’s Booklet,” I also saw my younger self; imagined her sitting by the creek ten years ago, overwhelmed by a shock of fear.

There she was, running through a script in her head of everything that could go wrong, of everything that she had to pack in order to survive in the woods. Should the list be so long for one night? Should the consequences be so grave? And then, to be foiled by something you could have never predicted so early in the diabetes game – a meter too cold to function. I felt like hugging her now, as I sat calmly contemplating the crane fly who had been drawn to the screen’s bright glow.

It occurred to me in that moment that sometimes you have to go back to the diabetes basics. It’s not all about the esoteric details of acceptance. Sometimes it’s about snuggling your meter in your sleeping bag as if it were hypothermic until works again. Of course, I gently removed the bug first. This time, I felt confident that my meter would resume functionality because I’d been through similar, though not exact, situations before. I also knew that I had packed an extra meter that was buried deep within the pack, likely in a warmer spot. I had reached for my meter preventively, not waiting until so much time had passed that I had no sense of what my blood sugar was. In short, I was prepared enough to be confident instead of afraid while addressing the issue. I don’t say this in an arrogant way. I fully anticipate moments of fear arising in the future – am planning on it. But zooming out on this small experience was a powerful reminder of how much I’ve learned and grown with this condition.

I was recently talking to my backpacking buddy about the process of learning to do things that I had loved before diagnosis, like camping and kayaking, and new things like backpacking, with diabetes. That process was never just about learning the details of management during different activities; it was equally a process of letting the fear subside. I likened it to what I’ve heard some people say parenting the second child is like. With the first child, you’re on guard for everything. Danger abounds. But by the second child, you’ve gotten through emergencies and been ok enough times to realize that you have more wiggle room than you thought. As I was journaling about this trip though, I realized that it’s also about what those experiences teach you in terms of preparation. I remember being so disturbed when I was first diagnosed that I could no longer run off into the woods and survive “on my own.” That I was dependent not just on two types of insulin, but on meters and batteries and test strips and ketone strips and glucagon kits and glucose tabs and carbs and lancets and alcohol swabs and lancet devices and pen needles and frio packs© and backup of all those things – and that’s just diabetes. All these details and what to do with them and when. It wasn’t really that I was learning how to backpack with diabetes, but more like I was learning how to diabetes through backpacking. Of course, not just through backpacking. I’ve learned the most about diabetes by stepping out my comfort zone. Now, the woods have always been a comfortable zone for me, but the only truly comfortable diabetes zone is near the kitchen with all your supplies and an omniscient level of knowledge about what’s going on in your body. So, traveling, camping, or any other significant change to your routine presents the opportunity for a loss of control and subsequently, inevitable fear. My moments of fear with diabetes have taught me the most about how to handle it, what my margin of error is, and what it takes to be prepared in various situations, known and unknown.

When we reached Flat Laurel Creek, we found it had become a swirling, copper-colored river. I was overcome by its transformation; still beautiful, but ominous in its power. Part of why backpacking has felt like more of an escape even than usual during this pandemic time, is that being outside reminds me that our expectations for constancy are not mirrored by the Earth. Because, as I discussed last post I cannot predict the future, being prepared becomes a process of planning for things to look differently than the ideal. With backpacking, this is a fine line, because weight really does matter and discomfort and danger are two very different things. Sometimes, I find that because my mind is so preoccupied with packing everything I need for diabetes, I forget the importance of all the other gear. I over-emphasize diabetes preparedness as if it were isolated from the rest of me, but as previously mentioned, diabetes is just a bonus on top of all the other processes of survival, like staying warm, fed, and hydrated. So, recently, as I considered whether I could cut some of the weight that I add with diabetes supplies by just being dirtier, aka packing less clothes, I thought about dropping my customary backup pair of socks. I mean, if they get wet I can just dry them out, right? After splashing through several puddles in my decade-old hiking boots that were once waterproof, I was thankful that I had not yet enacted that plan. My feet were wet and I knew they would be cold soon if I didn’t act. For me this feels scary. Once my feet get cold, they just won’t warm back up on their own, which usually leads the rest of me to chill. I didn’t want to become like my meter, too cold to operate. The clouds hung heavy overhead and the wind was picking up, making the little stove work extra hard as I fumbled around in my pack to find the smaller bag that contained my clothes. My hiking companion was off searching for firewood as an exercise in optimism that we gave up on shortly after. Unzipping the smaller bag, I sorted through the layers I had brought – booties, long underwear, and then, just as I began to worry that I had left my spare pair in the car, my teal wool socks appeared. I layered my down booties over them and curled my feet under my body as much as possible. After a (finally) hot dinner I was feeling, if not toasty, warm enough.

Right before curling into the tent, after scraping the last bit of dinner from the pan and tidying our food and toothpaste into the bear canister, the clouds broke and the deep night sky emerged into view. The nearly full moon shone a spotlight on my yellow tent pitched in the middle of a small clearing by the little fork of Flat Laurel. I can’t say I slept warmly, but rested peacefully, nevertheless. The next morning was perfectly cloudless – not even the lightest dappling of shadows. Our solitude at Sam’s Knob quietly evaporated and was replaced by the voices of hikers ringing out as they passed by. After a breakfast of strong instant coffee and sweet instant oatmeal nestled amongst the Mountain Angelica and Ash, we were off.

A case for pencils

Well, now that we’ve accepted that uncertainty is foundational, I feel relieved. It’s kind of a burden to pretend like you could possibly know anything for sure, from what is going to happen, to who you will be tomorrow. This pandemic period has been a time of forced and uncomfortable introspection for me; seeing parts of myself that I could ignore or hide when things were in a more predictable system, like fear and selfishness and loneliness, all the emotions (or are these emotional concepts?) I find myself seeking to control, if not stamp out completely.

In this battle with self to control, I have relied on planners. I would even call myself a planner. I have three virtual calendars, one personal, one for each of two jobs. And then, on top of that, I keep a paper planner. I love my paper planner. It’s a little notebook with calendar pages and blocks for each day where you can write details. I don’t actually write in it nearly as much as I used to, but I use it to visualize the map of my month.

This year’s calendar was full of plans written in pen. Things that were solidified because the tickets were booked, the arrangements were made. I’ve crossed through them all, but I still see them and am reminded of the shadow year running parallel to this actual reality that I find myself in. It’s like my expectations, which had become almost a script, are there, hovering in some liminal space.

This morning, as I was doing some planning, I stopped myself (in the nick of time) as I reached for a pen. Have I learned nothing?! I opened the nightstand drawer and grabbed a pencil, reassuring in its impermanence. Something strangely comforting in embracing, instead of the script, the fact that in truth I had no idea what would happen.

This past week, carrying the weight of a backpack once again, I started thinking about maps. The broad outline that illustrates what trail you are to follow, but tells you little about what you might encounter along the way. For us, that was sunshine and a little fog, a few joyful people passing by, wild ponies, and the layers of Blue Ridge Mountains that provided us refuge. It was a fuel canister that I thought wouldn’t light, a campsite that we hoped would appear before it finally did, an evening windstorm to fall asleep to. It was a reminder that as I spin around in little circles, the mountains go on being mountains.

And I think to myself, isn’t it strange that we draw the map of our lives as we go? We draw it to fit and then act like we were following some predetermined path, imagining that we are in control of our direction. I think this is beautiful, really, that we are able to pivot and then convince ourselves that we knew where we were going all along. I think about this in light of diabetes and where it continues to lead me – on to new stages and challenges. My newest challenge with diabetes is that I forget about it. It’s not that I forget to take care of it, rather, whereas once I resisted it and later I embraced it, now I just sort of do it. It’s always there, keeping me on my toes, but running in the background. Chronic conditions become just another weight in the backpack that we carry (have I mentioned that I love trail and river metaphors). And yesterday, as I wondered why I felt so mentally tired after what was otherwise not a very difficult day, in the middle of a global pandemic in which I am aware to a greater extent than ever of just how privileged and lucky I am, I remembered – oh, I have a chronic condition. And if I’m being honest, I have multiple, because diabetes is never just diabetes. And that was comforting too. To know, to have an explanation. To feel justified in my exhaustion at the end of the day, yet no less certain that I would pick up the pack tomorrow.

When I started writing this I got stuck here. Because I like to have at least a small glimmer of a point, you know, when I write. And I wasn’t sure what it was. Partly, I think I’m just really into planning in pencil right now, as if it were a creative act. I’m into the idea that I won’t be done in this process of knowing myself with diabetes, of knowing myself at all. I’m into the idea that I can set down some of the need to control, because my pack already feels a little heavy some days. And then I started thinking about some of the media that I’ve been consuming during the past few months, particularly after listening to Brené Brown’s recent ‘Unlocking Us,’ podcast, On My Mind: RBG, Surge Capacity and the Play as an Energy Source. For me the most salient point was the first that she made, being that if something was on her mind, she had found that likely it was on our collective mind as well; it’s just we don’t always share the things we feel troubled or embarrassed by. That and the part about Surge Capacity, in which she referenced the work of Tara Haelle, Your ‘Surge Capacity’ is Depleted – It’s Why You Feel Awful. I admit, I haven’t yet read the article yet, but in listening to Brown describe her takeaway, I was reminded of a conversation that I had recently with a friend about this process of creating a ‘new normal,’ around Coronavirus and whether or not that struck me, as someone who has created a ‘new normal’ around a chronic condition, as an apt way to describe what we were doing. I really appreciated the insightful question, because it’s easy to forget even as a person with diabetes all of the work that goes into the creation of normalcy every day, so for someone else to draw the connection was validating. And thinking about it, yes, I do think that Coronavirus has presented us as a society with both the fear of an acute crisis and, basically, management tasks that are very like living with a chronic condition. It’s also introduced the sort of uncertainty that I’ve tried to conquer related to diabetes for years – the kind that makes you feel like if you could just plan everything out enough, you could know what was going to happen with your blood sugar and you would know that you would be safe and able to do what you feel like you should be able to do in this body. Hmm.

So, the world has a chronic condition with clear and not so clear management tasks, and like any chronic condition, people are managing it in a host of different ways. And, like I’m experiencing with diabetes, the process of finding normalcy tricks us into thinking things are normal, and we forget about all of the work that we’re doing to get there. Two other things come to mind here – one being a part of Celeste Ng’s book, Little Fires Everywhere, right after Lexie has an abortion and Mia tells her (something like) that she’ll get through it, but it will be something that she always carries with her, informing who she is/her future. I’m also watching Call the Midwife right now, Season 9. In Episode 2, Sister Julienne says something along the lines of (paraphrasing), “So, I have to accept the world the way it is, rather than the way I wish it to be.” Take from these connections what you will. For me, it reminds me that I have accepted diabetes as one of those things that I can’t put down. A good reminder, because it’s easy to forget what we and others are carrying into any new situation – the layers that begin to stack up when we’re all under collective stress. And in this situation, I think, also hearkening to diabetes management, that it’s just about making the next best decision with the information that I have in this moment. Maybe this tiring time is a good reminder, since there are certain things I can’t let go of, to shed some of the burdens that I’ve wrapped diabetes up in, like a need for absolute control or a need to function at a higher capacity, as if it wasn’t any work at all, or shame about the negative emotions that sometimes come along with it. And to remember that while it may be a little heavy at times, carrying it along with me is necessary to get to wherever (and who knows where that is, really) I’m headed next.

Chapter 1: Hace doce años (12 years ago)

Hace doce años. Twelve years ago. That’s what I kept saying when people asked how long it had been since I studied abroad in San Joaquin de Flores, a small town outside of San Jose, Costa Rica. Twelve years ago I had flown on an airplane only a handful of times and never spent a night out of the country. On the flight down, I remember journaling, fizzing with anticipation, and suddenly realizing that maybe I didn’t know how to speak Spanish. I could sort of write and read in Spanish, but I started thinking of what I’d want to say and found that the words just weren’t there. I hadn’t yet learned to speak flexibly, describing things instead of using one staunch word, while shaping with my hands and body. I love speaking in this way really – like teaching a yoga class without stating the names of postures, but instead painting a picture of the body’s movements. At the time though, the thought was intimidating.

More intimidating than Spanish was my lack of familiarity with diabetes management. It might seem like I should be over writing about diabetes, but diabetes is just never over. It keeps evolving and I with it. When I first went down to CR, I had been living with Type 1 diabetes (T1D) for almost exactly two years. I’d managed diabetes while living in the dorms at UNCA, working at a summer camp, a folk school, and at that point through half of junior year.

When I landed in Costa Rica twelve years ago, the first thing I noticed were the trees. I couldn’t stop gaping at the trees, squealing about the trees, asking our teacher Esteban about the trees. On this recent trip, after I asked a third person to identify the current árbol of my affection, a British pal exclaimed, “Americans love trees!” I think that’s a bit of a broad stroke, because I can tell you that I definitely led the tree fandom among our group of 14 or so American students.

The second thing I noticed was that suddenly I was having to state my needs a lot. Also, suddenly I had a lot of needs, or at least that’s how I felt. This was difficult for me on many levels. I am an independent person. I have always been grateful that I was diagnosed with diabetes after I had left home, effectively as an adult, because I would have fought against the notion of anyone else sharing in my management. That’s the story I’ve told myself anyway. Told myself that I could manage it on my own and probably just as well as my pancreas could have. For the first couple of years after I was diagnosed, I maintained a white-knuckle grip on normalcy. I worked so hard behind the scenes; not just on achieving what I thought had to be perfect blood sugar, but also on stifling the emotional and physical burden of managing a condition as demanding as T1D. I told myself that I could outsmart it. I told myself that if I gave in to its demands, I was weak. I tried to hide the anxiety and worry that was filling me slowly to the brim.

I know that sounds dramatic, but it wasn’t at the time. It was slow and subtle and by the time I got to Costa Rica, I didn’t even realize it was happening. I was prepared to have the time of my life. Yet here was this chronic condition in tow (one that I would not be able to recognize or name as such until years later. I wasn’t just supposed to be tramping through the jungle, I was supposed to be partying with my new friends, trying new food, open to all experiences. And of course, I was supposed to be completely carefree. Isn’t that the study abroad, or even the American college, myth?

But I felt like I had a new shadow. The specter of diabetes was following me on every excursion, in my classes, walking down the streets. And I had to explain it as part of me. But it wasn’t a part of me that I knew. I was strong and healthy and physically capable of keeping up with anyone. I had built all of that into my identity since childhood, playing softball, camping with my family, kayaking and snowboarding throughout high school, and just generally loving physical adventures. I also loved trying new foods, connecting with new people, experiencing life differently than I knew it in my standard routine. That was who I was.

It was the first time I’d introduced myself to people who were meeting me as a person with diabetes. In the US, my friends and family all knew me as Katie who suddenly got diagnosed with diabetes. They knew me first. Now I was worried that people would think of diabetes first.

The truth is that I wasn’t just embarrassed, I was afraid. And it was really the first time in my life I had experienced that kind of fear…fear for my life. I was a pretty unafraid kid. I wasn’t reckless, but I had a sense of my limits and they didn’t really encroach on what I wanted to do. Now suddenly fear had crept in. What if I go low? What if I’m alone? What if I’m tired and forget my bag in the trunk of a taxi and the driver leaves with all my medical supplies and I die? It was like the cork had blown loose on the possibilities of what could happen and how it might lead ultimately to my demise. Then there was just your standard, everyday long-term complications of diabetes to worry about. I was afraid that if I let my blood sugar spike out of “normal” range, I would definitively develop kidney disease, neuropathy, etc.

I had started practicing yoga in high school and had a sense of how to calm myself down, so I tried, often. But diabetes would always creep back in. Sometimes I’d try to meditate and breathe long slow inhales and exhales, but then I’d realize I was low and I’d have to stop and double-check with a finger prick, wipe off the blood with an alcohol swab, find a snack, eat, and suddenly there I was, thinking about the power that diabetes had over me again.

I worried that people thought I was making it up. Not diabetes, but everything I had to do for it. If you don’t live with a person with diabetes, you can’t know how many tasks go into it every day. If you live with someone with diabetes but don’t have it yourself, it’s impossible to conceptualize the amount of decisions and thought that that it takes every day. Even if you’re highly empathetic, you just can’t know. And after 14 years of living with it, I believe that if you are a person with diabetes, eventually even you stop realizing how much you’re doing – both externally in action and internally in planning and calculations.

Studying abroad in Costa Rica was one of the best four months of my life. Yet I felt isolated by and even ashamed of diabetes at that time. I was afraid that going back would mean relieving those emotions, that I’d be pulled back into shame. I felt guilty that it had been so hard to just enjoy my life. A few really scary things had happened while I was there too. I had at least two intense lows while I was alone, one in the jungle (I hear you, why did I wander off into the jungle alone?) and one in a hotel room. I also ran out of insulin after leaving some of my back-up at a lodge on a weekend excursion. I had to obtain more without the guidance of my endocrinologist, and it was my first experience feeling the full nature of my dependency on an external source for my survival. How it could stop everything else. How fear and anxiety suddenly flooded my body when I thought about not having the insulin I needed. On top of that, I couldn’t get in touch with my endocrinologist at home (we did not have cell phones then! And the call your doctor, wait for them to call you back long-distance model was just not working). Eventually, a protracted game of phone tag ended with my mom as the middle woman translating my endocrinologist’s advice, which was to take only half the dose of the type of insulin I was given. Had I taken my dose as normal, I could have had a severe low blood sugar overnight.

Diabetes was part of why I stayed away from Costa Rica for so long, so I was surprised to realize that it was also a big part of what brought me back. Three days after I landed, the diabetes camp began. We awoke at 5 AM and departed San José as the sun was just beginning to enliven the colors of the city. Although we drove off into the mountains, we arrived at the camp in no time – the start of three very full days ahead of us. Three days of diabetes multiplied by about 80. So much diabetes. Everyone, from counselors to campers, living and playing and eating and sleeping with diabetes.

Diagnosed at 18, I never went to diabetes camp. I had also never worked at a diabetes camp before. As I was learning the system, I began to transition from paying primary attention to my own body, to guiding my attention towards any signs of low blood sugar I could spot in the kids. This was an interesting shift. Suddenly my own diabetes felt lighter. My brain had been unleashed to do what it is always doing but on a larger scale: strategizing, monitoring, and attempting to balance blood sugar. But here it was, finally, outside of myself.

At the end of day one, I laid down in my bunk bed, exhausted. My cabin co-lead told me that the doctor and nutritionists would come in at 12 AM and 3 AM to check every campers’ blood sugar. She said that they might even check mine. At first, I reacted to this with something like horror. No one else, save maybe for nursing staff at the endocrinologist or hospital, has ever checked my blood sugar. It’s my blood sugar. But then I was like, “Hmm…so I wouldn’t have to worry about my blood sugar overnight…” I could go to bed without that subtle background fear of having a low. That thought was nice, comforting. And that’s how I went to sleep. They didn’t check me after all, but I slept hard through the night knowing that someone else was monitoring the campers. I awoke the next morning feeling grounded, ready to start the day.

For more about the camp and the rest of the experience, stay tuned for Chapter 2!

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View of the soccer/games field at Campa Dia Vida.

 

Am I pancreas or a woman?

I’ve taken shots on planes, shots on trains, shots on buses, shots on shuttles, shots in a car, shots in a bar, shots in meetings, shots at crowded dinner table seatings, and after my recent four days of traveling, for whatever reason, I have ended up more tired of shots than anything else.

Obviously, this is a diabetes blog, so I don’t mean liquor, not even in the bar. I mean insulin shots and the role they play in my life as pancreas.

I would say in a typical day, I take a minimum of 8 shots. On the trip, I took maybe 12 – 14 a day. I take shots as if I were a pump.

Some of you know a lot about diabetes and others less. Some of you know what an insulin pump is and how it works, but if you don’t, quick summary: people wear insulin pumps on their body using a site that can be either be connected to the pump by a tube or connected to a pod that is stuck directly on the body (no tube) with adhesive. Now, both of these are changed somewhat regularly, usually 3 to 4 days, and in the in between time, you don’t take the site off. You might disconnect your pump to shower or for a few other reasons, unless you have the Omnipod, in which case you just shower with it. The pump delivers a continuous infusion of insulin to the body.

The potential benefits of insulin pumps are numerous (there are also downsides that I won’t cover here). Some of the reasons why people wear them is so they can eat a more flexible diet, giving themselves insulin in a way that lines up more perfectly with their eating habits, think: many smaller injections a day to compensate for unexpected snacks or eating more at a meal than you planned. Also, you can reduce the stable background amount of insulin you’re getting to lessen the risk of lows during exercise. I can’t do that on my current insulin regimen, which, as aforementioned, is a bunch of shots.

I like to both maintain as tight a control of my blood glucose (bg) as I can, while also having the maximum freedom to eat and be spontaneous in my life, which for me has turned into a bunch of little micro-doses a day. Traveling amplifies this, because I’m not in control at even a base scheduling level. Flights might be delayed; I might not have time for a meal. When I do have time for it, I might be on a 5-hour flight, and then not be able to move around afterwards and help my bg come down with physical activity.

If you’re like: “I don’t get what she means by help my bg come down with physical activity,” please let me know in the comments and I will write on these topics in more detail or point you to some resources.

I have a busy year of travel and this trip made me wonder if my attempts to free myself of the burden of wearing an insulin pump has saddled me with an extra burden. If I’m going to mimic what an insulin pump could do with shots, should I just go ahead and get with the times?

When I travel, I like to let go of the ideal of a regimented lifestyle and be free to follow what comes. On this particular trip, the first thing that didn’t come was my Lyft. I was waiting by the door at 5 AM, but twenty minutes later I made a quick pivot, driving to the airport and parking in the econo lot. No bolus insulin in my system meant that missing one shuttle bus to the airport after a dead sprint across the lot sent my blood sugar straight up (potential moral: stress is bad for you).

Eventually I made it to my gate, just as boarding was set to begin. Still on the ground an hour and a half later (potential revised moral: could have skipped the sprint) it was clear that making my connection with only an hour layover in between would be tricky. But, by some miracle (apparently pilots can floor-it if necessary), I made my next flight after only a light jog. There was no screen on that plane (I had already watched ‘Elf’ on the last leg) and I had no internet, so I spent some time (2 hours) staring idly at the seat-back. I recommend this sort of in-flight meditation. Upon landing, I felt refreshed and ready for a three hour longer day. Of course, my blood sugar had been taking off and coming down all day, after around 8 shots over the course of the two flights.

I don’t want to give the impression that my trip was anything but pure joy – because one thing I’ve become good over 14+ years with diabetes is carrying the annoyance and frustration of diabetes alongside all my other emotions. This is one of my happiest evolutions in life with diabetes. I used to be so much more critical of myself and my ability to be a pancreas. But I’ve come to accept my imperfection in this way, because it allows me to do and enjoy so much more simultaneously. Some of the non-work-related highlights of this trip were:

  • Remembering my general love affair with San Francisco and its angles, colors, and vibe.
  • Reuniting with one of my best friends from high school. We explored the small mountain city he lives in outside of San Fran, looked at new houses for him and his partner to move into (which was an unexpected delight), and recounted all of our best inside jokes multiple times.
  • Racing from Palo Alto just in time to make it to a dear friend’s yoga class (why is my life full of so much racing? Do I need to leave earlier or just accept being late? Timeless questions). Afterwards, he took me to Mission Chinese, which was some of the best food I’ve ever had. The whole place is cast in a magical red glow. We ordered Kung Pao Pastrami, Spring Rolls, and Taiwanese Eggplant, and remembered all of the potlucks, adventures, and characters of college.

In summary, by the end of the trip I was left with the vague impression that all I had done for four was balance my blood sugar – but in truth, that was just exhaustion speaking. In the moment, I’m doing it all. Upon returning however, I did look over my bg records and identify a few times when I could have done less tweaking and perhaps gotten better results. So maybe in times of reduced control, loosening my grip on the idea of it could bring be a little bit more bg, and general, peace. It’s a thought experiment I may report back on.

Thanks for reading and happy new year!

Katie

 

 

Dogs and diabetes

Hi Friends,

I’m writing to share a piece I submitted to Diabetes Daily as part of an effort to promote the new fundraising campaign by Life for a Child (LFAC) that features stories from kids with T1D in Bolivia.

Check it out here: Profiles in Strength: A Story of Type 1 Diabetes in Bolivia

One more thing – I suspect I’ll stop posting my blog on Facebook soon, so if this is the way you find out about new entries, please follow me so that you’ll be notified in your inbox. You can always unfollow or adjust email settings if it becomes too much! And please feel free to share this blog with anyone who you think might enjoy it.

Thank you,
Katie

Walking through Innsbruck

To awaken quite alone in a strange town is one of the pleasantest sensations in the world. – Freya Stark

I stayed in a small Air BnB across an azure blue river that ran straight through the middle of Innsbruck. I walked there for the first time from the train station – my gracious host offered to pick me up, but I screwed up military time in a text message and told him I was coming 2 hours after my actual arrival. He gave me directions and I looked them up using the train station’s wifi (which was the only way I could use my phone) and headed on my way.

Google Maps estimated a 25 minute walk. I arrived an hour and a half later. Although I was toting my backpack stuffed to the brim, a rolling suitcase, and finally my purse, flung around my shoulders, I wasn’t slowed down too much by my baggage. I just simply couldn’t stop spinning around in circles to take in the shining spirit of the city. Here’s my walk in pictures:

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I strolled across the street to a pedestrian only plaza where shoppers and diners milled and mingled.

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…before finding this strange alley of murals. That closest one is a kiwi on a chicken bone. Perhaps a show of peace among vegans and carnivores (although I’m doubtful).

img_0402.jpg I didn’t stay at this hotel; I just took this picture to prove I was really in Innsbruck.

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I walked across the bridge towards my new abode in the wake of mountains all around.

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Et voila, practically home. The huge wooden door was tucked behind a swath of climbing red ivy between two classically Austrian buildings.

Everyone was walking or biking up and down the steep hills. In many places there were wide pedestrian sidewalks next to double-lane bike paths, bordered by a line of trees and flowers, before finally meeting the edge of a quietly buzzing road on which the motorists dutifully slowed on yellow and stopped on red.

It took me awhile (I mean like two weeks after I returned) to realize why I felt (at least in part) such a sense of peace in Innsbruck. It could have been the mountains all around or the fact that I was at a conference where everyone was thinking and talking obsessively about diabetes (just like me!), but another huge part of it was the pervasive walkability of the city. Pervasive because it was unavoidable – you couldn’t get where you needed to go without walking. It didn’t just feel safe to walk alongside the cars, but in many places there were no cars at all. The restaurant I ate at twice – Osterreich – which I actually thought had something to do with an Ostrich, before I realized how painfully complacent my brain was acting – was only accessible via foot. And, what’s more, the whole time you sat, enjoying grilled chicken or roasted sausages, fluffy piles of freshly grated horseradish, or mounds of sauerkraut, you could watch, not cars whizzing by, but a live feed of humans doing human things.

IMG_0475.jpgFor example, this brass band bedecked in green, who lined up to play in the heart of the city.

Walking is one of my favorite things. But also, walking is one of my favorite things about traveling. I’m grateful to have a car, but I don’t like cars. I like moving more slowly through life and having the chance, if I so choose, to reach out and touch it. And diabetes loves a walk. People talk about the benefits of exercise for diabetes management, as if exercise was some strange set of unnatural activities that the body must be guided through. I’ll admit, I go for a run every now and then, and it does bring my blood sugar down, but for me, there’s nothing like walking to bring my body into balance. Adam Brown, a writer often featured on diaTribe, explains the blood sugar benefits of walking beautifully here. When my bg is high, instead of dropping rapidly like I do while running, I glide towards a more reasonably blood sugar. Instead of tiring me out, a long walk makes me ready for another walk, or a night of dancing (lucky for me too, because of all the specialists, pediatric endocrinologists are the best dancers).

My last day in Innsbruck, after cramming my head full of presentations and standing up to do a couple myself, I took myself on a mind-clearing walk. My host had told me there was a tram to the top of the mountain, so I headed up the hill towards the peak. Shockingly, I did eventually find the tram, but then decided that my budget preferred continuing to walk. Oh also, that’s another thing, walking is cheap!

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Not to mention beautiful.

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Gazing out over Innsbruck, I felt overwhelmingly grateful for my experience and for all the people who helped me get there. Although I enjoy the feeling of solo exploration, traveling, more than anything else I think, makes our interconnectedness blazingly obvious. I was guided by countless mentors and passed from hand to hand of old and new friends on this journey. Thanks to each and every one.

Leaving Vienna in the morning

**Monday of this week was World Diabetes Day 2017, so in honor of all my diabetes sisters, brothers, and supporters, this post will offer a little more intimate look at the diadetails of my life than others.

After yoga Monday evening in Vienna, I followed a group of yogi/inis to a delicious dinner of Vietnamese food. Yes, definitely Vietnamese and not Viennese – although I would end up eating a lot of traditionally Austrian fare. I was just a little bit low by the time we arrived at the restaurant [70 mg/dl or so], which was really a pleasant surprise after battling some higher numbers on the sedentary plane ride. I ordered an ‘Elderberry Water,’ description in German, so I was taking a total leap. It was, in fact, an elderberry-infused glass of water – and totally delicious.

I also ordered several other things – Vietnamese crepes and spring rolls with interesting mayo-based sauces. As a lover of sauce I was delighted. I was also almost delirious from exhaustion, approaching the evening of the day that should have been a night, but it was wonderful to be sitting at a table with people living their lives in this new city I’d just stumbled in to.

That night, teeth brushed, ready to climb the ladder to my lofted bed, I found the walk back to the apartment could not compete with the long plane flight, screwed up schedule, and reduced control over food choices. Nevertheless, despite a blood sugar of 201 mg/dl, I took an extra shot and crawled happily into bed.

Every morning I wake up and check my blood sugar. Then, as my coffee is percolating, I take my shot – the same amount each morning unless something exceptional is happening that day. I have my first cup of coffee and plan the day while my insulin activates, so to speak. It’s a wonderful routine – a forced stillness and reflection courtesy of diabetes. When I awoke in Vienna to a dreamy light pouring into the vaulted living room, my blood sugar had evened out to some degree (mid-hundreds). I drank my coffee staring out onto the criss-cross of streets below and apartment windows across.

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Unless you have it, at this point you may need a diabetes glossary to understand a few concepts:

Walk competing with a plane ride…What?

Insulin activating…Hmm?

The day-to-day details of life with diabetes are heightened when traveling, precisely because of the exciting release of control that a good adventure requires. So at the same time that you’re sinking into the moment, diabetes can loom even bigger in the back of your mind. But I’ve learned, slowly, painfully over the years, to not let it steal the joy of the unknown from me.

A few ways I’ve successfully experienced this reclaiming of joy:

  • Allow myself a wider target range while traveling – if I’m not dropping dangerously low at night, I’ve succeeded! Likewise, as long as I can bring a high blood sugar down, things are fine. Interestingly, often this more ‘relaxed’ attitude brings with it surprisingly ‘good’ numbers.
  • Tin foil and plastic Ziplock bags at all time. How could a Ziplock bag improve my bg numbers while traveling? – you ask. Well, this may not be true for everyone, but I am the sort of person who doesn’t need to eat a whole treat to be satisfied, but who feels utterly denied if I can’t try a bite of something I’m offered. I don’t typically buy or order things that don’t support my blood sugar, but if they are there and free – I just gotta know. There are only a few exceptions I turn my nose up at completely (likelihood increases if said ‘food’ is enveloped in sealed plastic). So if I get a treat while traveling, say a flakey pastry pinwheel like they displayed on small square, porcelain plates at the conference during coffee breaks, I have a delicious bite (sometimes two) and pop it in the bag. Although often I throw away the remains before completely consuming it, it’s still less waste overall because one treat extends over a whole day, or sometimes even two or three (remember to refrigerate when necessary)!
  • And let’s talk about refrigeration. I always arm myself with a doctor’s note before traveling that states that I will be traveling with my medications and that they will need to stay cool. Perhaps because of this, or maybe my medical id bracelet (also essential when traveling alone), or because I am open about proclaiming my diabetes in airports, I have always been able to carry a little cooler with me without being stopped for having what is technically an ‘extra’ carry-on bag. I never let this cooler out of my reach – not to put it in overhead bins and definitely not to check it. I’m curious if others with T1D have successfully traveled with small coolers. Mine is soft and I use a little tiny icepack – which does flag the security scanners sometimes. Both times this has happened I have been cleared to continue on my merry way.

My diabetes travel guidelines in summary:

  • Be kind to myself, aka loosen up
  • Carry Ziplock bags or tinfoil
  • Be open/up front about diabetes

I packed a yogurt in my icepack for my four-hour train journey to Innsbruck, during which I would retrace on the ground the route I had flown the previous day. I jostled back in forth from one side of the train to the other trying to catch views of mountain peaks and aquamarine waterways, before finally being lulled into a nap by the hum of the rails.

 

Travels with Diabetes, Part 1: Boston to Vienna

I returned about a week ago from a ten night trip spanning Boston, Vienna, and Innsbruck. See timeline below:

Night 1: Boston > Night 2: The sky > Night 3: Vienna > Night 4 – 8: Innsbruck > Night 9: Vienna > Night 10:Boston

Along the way I was blessed to have the company of my gracious hosts in various cities, my mentors at the ISPAD (International Society for Pediatric and Adolescent Diabetes) Conference, and others who are passionate about diabetes care and research just like myself. In fact, the abundance of miracles that transpired during my time has left me in awe. Still, traveling with diabetes, my constant companion, was as always, a little tricky. Diabetes can really be a pain – especially when your body is tired and out of its normal routine. So this post is going to employ grounded idealism – which I find is becoming my default (side effect of aging?) – and will follow a ‘challenge,’ ‘reward,’ ‘strategies’ format.

Challenge: Many legs of travel make for a lot of time on airplanes and lugging around luggage while sort of lost, eating snacky food all day.

Reward: Time with one of my best friends who has recently moved to Cambridge, MA. We explored the city, identified magnificent trees, ate vegan-ish food, and ‘played’ with her turtle Zeke.

Strategies to keep Type 1 diabetes (T1D) happy: I spent about 24 hours in Boston and had plenty of time Monday morning to take a long walk (thankfully the weather was magnificent) across the bridge (in view of the iconic Citgo sign), climbed on some trees, and moved for a solid hour. This brought my blood sugar down, increased my insulin sensitivity, and prepared my body for the long 7+ hour plane ride ahead. If you can’t take a long walk before your flight, some yoga or stretching is definitely better than nothing!

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Flight attendant“What would you like for breakfast?”  Me“Sleep.”

Challenge: Jet lag! And missed sleep while crossing time zones and traveling

Reward: A full day in Vienna

Strategies: So I guess this is always the case, but at the time the wonderful flight crew (thanks Swiss Air, I mean really, you should fly Swiss Air) brought around breakfast, it was 11:30 pm in my world and body. Still, I pressed on, drank another cup of coffee, ate half a croissant, and tried to prepare myself mentally to begin a new day. I learned that perhaps I approached jet lag all wrong. Having slept 0 minutes, I arrived in Vienna and somehow, although I don’t remember the process, made it to my hosts’ 4th story flat. I was graciously welcomed and then immediately fell asleep on the lofted guest bed for 3 hours. One of my hosts woke me and warned that if I slept any longer I’d feel even worse tomorrow. I remembered to check my blood sugar and was pleased to find it wasn’t so bad, 145 mg/dl or so. I took half my Lantus dose, because my schedule was all screwed up and I needed to begin working my doses back towards ‘morning’ and ‘night.’ And then I began the remediation process. After showering and drinking more coffee, I followed my hosts’ directions to Stephansplatz – the city center and location of the giant Stephansdom Cathedral, which I just learned from Wikipedia is one of the tallest in the world. I wandered among the young men in period costumes who showered me with flyers for the Mozart theater experience that I just had to see. I walked inside the giant wooden doors of Stephansdom, carved elegantly and polished, to enter the quiet cavern of worship. It was dark, as most giant cathedrals tend to be, but the stained glass scenes were vibrant and prayer candles lined the front iron rails. I added a candle to the bunch, walked slowly around the wooden floors listening to the echo of my footsteps, snapped a no-flash picture, and exited, emerging again into the light.

My next stop, after more meandering, was my host J’s yoga class at Feel Good Studio. This is what really saved me. Huge life tip: when traveling, look up local yoga studios and see if you can stretch out your body and shake off your jet lag. The amazing side benefit is that many studios offer new student deals, which means that often you might even be treated to a free class. J’s teaching style was just perfect for my state of being – a solid flow with individual attention and mindfulness every step of the way. He recommended plow, with heart lifted toward chin, as one of the ultimate anti-jet lag poses. Afterwards, although I fell asleep completely in savasana, I felt somewhat reenergized and ready to meet the next leg of the trip.

I’m going to break this post up, because it’s important to rest and not rush an adventure in its unfolding.

 

The Best Thing About Backpacking: Part 2

A light breeze was rustling the rainfly when we awoke the next morning, but the downpour was over and waves of sunlight rolled past, lighting up our little orange home. I flipped from side to side a couple of times on the hard ground, trying to keep myself from tumbling down the slope. More sleep being evasive, I was eager to start the water heating for the first cup of coffee in the woods – a unique pleasure that combines two of my favorite things into one. I sat up and put on my old pair of backpacking glasses, found my meter case safely stashed in a plastic bag, and checked my blood sugar. 160 mg/dl – a little high. This was, I thought, to be expected, since I was 137 when I went to bed and I’d cut my Lantus dose by half in preparation for the day of hiking. Better than fighting lows all day, I thought. I unzipped the soaked rainfly which now clung to the tent after its stick stake had crumbled and given way overnight. I managed to haul myself and my pack out from under it and stumble into the bramble patch that we’d appropriated in the night. Ahead of me, a few short oak trees canopied blueberry bushes and huge ferns. Further, at the border where the land turned steeper, big Balsam fir trees spread their evergreen branches into regal teepees. To the right, mountain after soft mountain, rolling in the Virginia way. Behind me, a taller peak with a bright green bald was dotted with what could have been nothing else but a herd of wild ponies.

Unbeknownst to us, we had set up our camp in paradise. I ran back to the tent and crawled into the deflated vestibule. “It’s so beautiful out here!” I shouted to my slowly stirring companions. “Really?” “Oh yeah?” I had already run back outside. The Navigator unzipped the trail side door of the tent, just in time to say hello to a pair of early morning hikers. Also unbeknownst, we had set up our camp at most 10 feet from the Appalachian Trail. In the night, in the rain, it had felt like we were far from the pedestrian thoroughfare. This was an accident of minor importance though. We set up our first breakfast on a small rock to enjoy the views of ponies and passersby. I took about half my normal dose of Novolog to go with a higher carb breakfast than usual and halved my morning Lantus dose (I’m on a split Lantus regimen right now) once again, to set myself up for a day with less lows.

From there the skies just got bluer, in every way. After we’d retrieved our wet clothes from the branches we’d decorated with them, we set off again, this time North on the AT, to begin our ‘loop.’ Within moments we stumbled upon this scene:

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Unlike my last eager venture to Grayson Highlands, I decided that this time I would allow the ponies to come to me if they wanted, but I would not approach them first. Luckily this worked out just fine. They were very friendly. They also seemed intrigued by my hiking poles (just another reason among the many to carry hiking poles).

Sometime later, we said goodbye to the ponies and continued on our way. Light clouds dappled the sky and the colors around us shone in response – bright greens, sunset oranges from the just-past blossoms of the wild, fire azalea bushes. It was slow going because we had to keep stopping to greet and photograph every pony in the area. We could probably provide a pony census to Virginia if it was ever needed. And just when we thought ponies had come to rule the Highlands’ ecosystem, we happened upon…

 

these lovely (and somewhat intimidating) ladies. They were lunching on a high mountain pasture, so we decided to as well. For the first few minutes of lunch I fed the low blood sugar that had crept over me as I gazed out over the 360 degree views in a partial daze. It seems like for those first few hours of backpacking I can’t ever eat enough to keep my blood sugar up. I slowly came back to our beautiful reality while Raindancer, who had quickly become comfortable with the herd, fell asleep for a 15-minute nap.

Somewhere before or after lunch the trail took us over a little stream and we stopped to refill our Nalgenes. Hiking/life in general with diabetes requires a lot of water. I recently learned (remember this for your next trivia night) that diabetes comes from the Latin for: “It has to flow” (I know that clinically this is not a good thing, but philosophically I really dig that slogan). So anyway we got out our Aquamira and engaged in the process of readying our water. In life, I’m not always patient with the process, but there’s something about the process of purifying water with Aquamira that I love. Maybe this is part of ‘the best thing’ about backpacking – engaging deeply with the process of getting where you want to go.

Sometime around 7 pm we made it to a crossroads, literally and figuratively. We needed more water, we had reached a large boulder that supposedly offered good views, and we were tired. We decided to set up camp and go in search of water, rumored to be just around the bend, after eating dinner. Prior to eating dinner though, we ascended the curved face of the boulder and were met with a literally breathtaking view. You hear people say things like, “she looked breathtaking,” or “wow, this sunset is breathtaking,” but if something is really breathtaking you can’t speak because you are gasping. And that’s how this view was – like, “Ahh!” So beautiful, so unexpected. The sea of clouds had parted and the mountains were everywhere. Although I’ve grown to love the Piedmont of NC, views like this remind me that there’s just nothing like having your breath seized by the mountains. Could this be the best thing about backpacking?

Minutes later, I had wondered if perhaps tearing into a tortilla bowl of beans, tofu, cheese, and avocado as you stretch your tired legs out on the bare ground was perhaps the best thing. There’s nothing like eating dinner in the woods when you’re really tired after a day of hiking. Also, here’s where I’ll make my plug for never going backpacking without hot sauce – it’s worth the weight. I carry mine in a small Tupperware given to me by none other than the Navigator, who understands my love of sauces. It’s very lightweight and a huge improvement over the whole glass bottle of Cholula I carried last time I was in Grayson Highlands.

The day was perfect – magical in every way, and so it shouldn’t have been a surprise to us that the night sky would have been perfectly clear, illuminated only by the pinpricks of a million tiny blazes of light. Why should we have been shocked that the ground flickered with the slow awakening of mountain fireflies, who move with more direction and purpose than the rapidly flitting lowlanders? And yet still, with stars above and around us, we stood mesmerized. I’m all about favorites, ultimates, zeniths, etc., and so I could say that if there was a thing that was best about backpacking, it had to be this mountain field under the cover of darkness – air the definition of fresh, a comforting silence filling the space in between the calls of katydids and click-click of bat wings.

But, I just can’t say that. In fact, no one of the miracles of the day could take the title of ‘best thing.’ To categorize our time would have been to leave out the process, the parts of sum; to forget that each moment was a combination of feeling connected to the Earth and to each other. Perhaps, if I want to answer my friend’s question, I’ll land on connection as the best thing about backpacking. It’s different every time, but it happens, somewhere in between bailing water out of the tent with your bandana, spotting a speckled salamander under an old log, and helping each other find the trail.

A quick acknowledgement and plug for the amazing blog of Hiking Bill. He provides in-depth descriptions of many hikes in the Southern Appalachians and includes helpful ‘hike planners’ at the end. 

You can find his description of the Pine Mtn/AT Loop that we used to plan our route here.

The Best Thing About Backpacking: Part 1

Last night, as we were standing in the kitchen, my roommate and friend asked me what it is about backpacking that I love so much – “You know, like what’s the best thing about it.” It was a good question; I had been talking about how usually, the day after a weekend of hiking and sleeping in the woods, I get back and feel elated for the first half of a day and then grumpy and disoriented for the second. It’s like I’m coming down from the extra endorphins my body makes when I’m frolicking in the mountains. I thought back over the past weekend, starting with the first moment, in order to answer her question.

It was around 9:40 pm this past Friday night when two of my dearest friends and I started our weekend hike. This is by far the latest I’ve ever started a backpacking trip, and I both do and don’t recommend it. I don’t recommend it because navigating in the dark, even with headlamps, is a little trickier, and I do because experiencing the woods at night and getting in touch with the feeling of the ground under your feet so quickly, immerses you immediately in the experience. We planned to hike about 2 miles, half of that headed South on the AT, before resting for the night. Along the way, as I was chatting with a friend I hadn’t seen in several months and who now I could only see via the narrow light of my headlamp, a moth flew down my throat. If you’ve ever been around anyone who this has happened to and you think their coughing seems a little excessive, as if they are just trying to be dramatic, I beg you to think again. This is one of those unique experiences of discomfort that can’t really be compared to anything else. In fact, I couldn’t shake the physio- or psychological trauma of swallowing that little bug until the next morning, its memory eclipsed by the pounding rainstorm we weathered overnight.

It was around 10:20 pm, perhaps five minutes after the swallowing and two minutes after one of my friends made a comment about how glad she was that it wasn’t raining, that the droplets began to lightly fall. At first it felt nice – even though we’d driven North and the air had cooled some from our sticky Triangle, NC climate, hiking had heated us up fast. After the light sprinkle turned steady though, we remembered that there was every chance that the campsites we were searching for weren’t going to be marked with neon signs. At that point we started looking for shelter. We had passed a couple of grassy clearings a few yards back, so we turned around. I headed down a narrow deer (or pony) trail to look for a spot, my friends following. We came to nothing, at least nothing good for sleeping, and I pivoted to head back to whence we’d came. Promptly, one of my friends who I’ll call ‘the Navigator’, alerted me that I was headed off in some random direction that was most certainly not the one we’d come from. This would happen at least 8 more times over the course of barely two days. No one would ever call me the Navigator, nor should they, which is one of the many reasons why I consider backpacking a team sport.

Back on the AT, another deer trail caught my eye, this time leading to a scrubby little oak tree, its branches spreading into an umbrella-like canopy. “Here’s a spot,” I shouted. My friends followed, but when they saw the tiny clearing surrounded by blackberry brambles, they looked skeptical. It was not the best spot ever, but the ground was flat-ish, the tree offered some protection but was not by any means taller than the rest, and it was now pouring. We quickly threw down the tarp and set up the tent, just to realize that the tent stakes were missing.

After finding some sufficiently dry sticks and jamming them into the ground to keep the rainfly off of the tent, we crawled inside. The Navigator was hastily bailing water from her side of the tent which had turned into a puddle over the past three minutes. We realized that the rainfly was sitting on the tent and causing water to pool up and drip inside, so the Navigator suggested that we tie a ‘sky hook’ to keep it off, which basically means tying a rope from the rainfly to a neighboring tree to create a canopy. While the Navigator bailed, my other friend, who I’ll call ‘Raindancer’ and I, leapt outside to tie the hook. At this point we were completely soaked and thoroughly scratched by the bramble we had pitched our tent in, but we reentered the tent victorious to find that Navigator had mostly dried the floor with her bandana.

That evening, as our bodies held the tent down, the long arms of Hurricane Cindy swept gales around us. The rain thumped down and the wind rattled our little tarpaulin home. I closed my eyes, smiled, and fell into an intermittent sleep.

Was the best thing about backpacking swallowing a bug? No, I thought. Was it getting lost down a deer trail within less than an hour of starting the trip? No, I thought. How about sleeping in damp socks, on a slight slope, in the pounding rain? Surely, this couldn’t be it. I’d have to keep retracing our tracks to figure it out.

To be continued…DSCN3619.JPG