Components of Healing and Wellness

Before my diagnosis back in 2005, I had been sick for months. I knew nothing about diabetes (oh how much has changed!). In those months, I’d told myself that even though I could barely get out of bed, was losing weight rapidly, and once passed out in the library for hours, I was probably fine. Turns out, I was not. By the time I was diagnosed with type 1 diabetes (T1D), I was in diabetic ketoacidosis, which means that my body had started to burn muscle and my blood had become overly acidic due to a buildup of ketones. As a person with T1D, I am at risk of this life-threatening condition throughout the course of my life if I experience any interruption to my insulin, including if being sick means that I cannot take insulin as usual.

I preface with this because I want you to know that seeking help is not something that comes naturally to me – at least not until things get really bad. Which is why I was surprised when, overcome with intense dizziness and nausea, I found myself on all fours in the back of a plane yelling “Help!”

It was about a year ago when my friend (who is also my colleague), and I were on a flight back from Germany where we had participated in a conference talking about the need for equity when it comes to closed-loop insulin delivery technology. If that’s confusing, I’ll explain, so stick with me. We were approaching the last leg of our journey, headed back to London to spend one night in the airport hotel before I flew back to the States, and she returned to her town.

It could have been dinner the night before, it could have been our midday snack, it could have been travel stress or any number of things – the point is, I got violently ill on the plane. I will not go into details of that except to say, when I cannot keep food down, I run a greater risk of becoming dangerously dehydrated and going into DKA. If I cannot eat/absorb food, taking insulin becomes dangerous because of the risk of low blood sugar, but if I don’t get enough insulin, my risk of DKA is greatly increased. It can be a dangerous loop. That is why, at around 11 pm, when my friend and I had finally checked into our airport hotel, she suggested we consider a trip to the ER. This brings me to what I have identified as the three key components to my personal sick day wellness strategy with T1D.

1. Having a detailed plan

When I was first diagnosed and in the few years after, I prepared extensively for travel. As I became more comfortable with diabetes management over the years, I let some of my preparation slide. While experiencing less anxiety over what could go wrong has been really great, preparing for what could go wrong is still essential for me, which I was reminded of on this trip. I was also reminded that the time to prepare is when I am well. Luckily, I had support, but if I had been traveling solo, as I have in the past, I could have ended up in really bad shape.

2. Willingness to accept help

I admit that I was resistant to the idea of going to the ER. For the first18 years of my life I did not have T1D and I dealt with sickness differently. But my friend has weathered more sick days with T1D than I, and I really trust her. Once she finally convinced me, she called an Uber and set the wheels in motion. When we climbed in, she told the driver where we needed to go, she let the front desk know that we were checking out and would not return. I simply languished beside her as she orchestrated my safe passage to the ER. It was also she who sat next to me in the ER for 6 – 8 hours and reminded me to check my ketones, check my blood sugar, and generally kept an eye on me.

3. Available help from someone understands diabetes and can be your advocate

The other thing about having help from this friend was that she really gets diabetes. She knew what to say to the staff at the ER to get them to take my concerns seriously. She knew that my rising ketone levels were a problem. She minimized nothing and was an advocate for me when I could not be. I have thought about what I might do if I was alone in this situation and identified a few things I learned from her that I will carry forward, specifically knowing where the nearest ER is anywhere I go, and having an up-to-date sick day note that specifies what I need if I am sick. Even though I might know no longer need to reference these as written guidelines, it’s helpful to have them at the ready for medical providers or others I might be traveling with. Before I go on my next trip, I will do preparatory work ahead of time, when I’m well, in order to be that stable friend for myself if I need to be. *This post’s featured image is one of us a few hours before I became ill.

4. Supportive technology or access to supplies

This one I want to spend a little bit more time on. For the past year, I have used the Omnipod 5 system in conjunction with the Dexcom 6 CGM. This means my insulin pump, which delivers my insulin, can communicate with my continuous glucose monitor (CGM), which measures my blood sugar. This allows my insulin pump to automatically adjust my basal insulin, which is the continuous background insulin that I need, to help me stay closer to my target blood sugar range. There are still a lot of inputs required from me such as carb counting and bolusing for what I eat, adjusting based on my physical activity, and the logistics of site changes and troubleshooting. The pods, which I change every three days, are expensive, even with insurance, costing $140 a month. However, while in grad school, the amount of time and energy the system has saved me has felt invaluable, even though it has meant taking out loans to pay for school. Previously, I was making up for the work the system is now doing, and when I went on this system I became aware of a renewed energy and increased capacity to focus on my schoolwork and be engaged with part of my mind that had previously been allocated solely to diabetes.

When I became sick abroad, my perception of the system as something that I had to justify to myself shifted to something that was a life-saving necessity. All the while that I was unable to eat and finding it hard to even think about diabetes, my CGM was reading my blood sugar and my insulin pump was giving me little micro-boluses to compete with its rising levels as I slowly drank soda and other fluids. By the end of the 24-48 hour period, it had given me an amount of insulin within my usual daily range, and kept me hovering from 150 – 180 mg/dl, which for me was a good sick day range. That is work I could have been doing, giving myself shots with a half-unit pen, but not nearly as precisely and definitely not as effortlessly. In fact, that would have added a new level of error that would have most assuredly brought more difficulties my way, which I say from previous sick day experiences.

It was amazing to be able to just focus on healing, instead of micro-managing blood sugar all day. In fact, once I made it through the nausea, I remember my recovery day as peaceful, rather than miserable, in part because I was not working, not in school, and not really focused on diabetes. Just resting and being cared for.

For years, in fact from the first weekend of my diagnosis, the narrative I have heard from many healthcare providers and diabetes organizations has been “if you take care of yourself, you can live a completely normal life with diabetes.” I get that this can empowering for many people, but I wondered for many years why I felt like I was failing to achieve that normalcy. Yes, I was managing to pursue my dreams, but I was working so hard, filled with anxiety, and felt like I was struggling to keep up. It might have looked normal from the outside, but from the inside, it felt like a continual marathon. Since I began using this system my life has felt a lot closer to normal – and I can barely afford it. I think my more accurate narrative for many years was, “if you work constantly, other people will think that you live a normal life, but you will know that you can keep fooling them only as long as you are willing to keep working 24/7 and say that you’re fine.” Or maybe, “you can live a normal life, but only if you have really amazing health coverage and a good deal of expendable income and supportive family and friends and adequate time off from your job…”

Now, at this point, my narrative has shifted to encompass the emotional adaptation to T1D that has been part of the journey for me. After many years of T1D I think my most accurate narrative is, “your new normal will be planning and adapting to the unexpected. It will be asking for and accepting help and meeting really amazing people who are navigating T1D too. It will be learning to rest and do less every day so that you are able to enjoy what you do. And it will be feeling like you are failing sometimes and living in fear of your health insurance coverage changing or ending.”

It makes me think that maybe if we said all of that, rather than saying, “you can live a normal life if you take care of yourself,” we would be forced to confront the need for support and the reality that without adequate, reliable, affordable access to diabetes management supplies, normalcy is a false promise. Moreover, we would take the relieve some of the burden from the person with diabetes and center it appropriately on healthcare systems, which are currently leaving many people out and bankrupting others.

I’m concerned that when I’m no longer in grad school, I will not have an insurance plan that allows me to get supplies at even the cost I currently pay, and I will have to go back to shots. It’s amazing the reservoir of mental and physical energy that going on such a system opened up for me, and I want that for anyone with T1D who is interested in such technology. That requires prioritizing insulin access as a human right. For many people in the world, shots or even vials of insulin are not guaranteed, and this is a horrific injustice. Battling supply scarcity and paying a huge chunk of your income just to have what you need to live steals the energy needed to dream and thrive. So as this amazing technology progresses, my hope is that for each advancement in diabetes tech, there is the same energy and eye to access for all people with T1D, both for the technology itself, and the insulin it requires.

*As always, I share my personal reflections on T1D and my writing is not medical advice.*

Attainable goals

As briefly mentioned in the previous post, I recently (in the last two years) starting experimenting with what it would be like to set goals in line with my desires. This seems basic as I type it, but I think what I was doing before was setting goals in line with my hopes or maybe more realistically, my shoulds. Even if it was a goal I wanted (desired) to accomplish, I would set it on a hope/should timeline. For example, I wanted to publish a book – by the time I was thirty – and I didn’t. Although really, I just meant that I wanted to write in a format that other people would read. But I thought I needed to manipulate this desire into a framework where I could measure it and check it off and somehow through that process feel good about it. I wanted to accomplish!

I’m 35 and I haven’t published a book. At the start of the pandemic I put together a manuscript of poems from my twenties and submitted it to a poetry publishing contest. I didn’t win and then I didn’t really pursue it further, in large part because the poems I had compiled didn’t speak to me the way they had years before. Almost all of my poems are about things that fly – birds, bugs, bats, that kind of thing. And searching for something. I guess maybe once I had gone off to find something else, these poems didn’t make as much sense to me as they once had.

The interesting thing about pursuing a sense of good feelings, aka accomplishment, through goals is that if you’re not careful, you’ll take the joy out of the process. I’ll never write a book by the time I’m 30. I’ve missed my goal. Should I even write? What’s it all even for?

So that is why last year I set my New Year’s Resolution to eat more cheese. I knew I wanted cheese and I also knew I would eat cheese, and aren’t goals just about fulfilling our desires anyway? I have to tell you it went really well. I’m not saying I did this to make a big statement to myself, it was more of a joke, but I did notice that if flipped the script a little bit. When I was first diagnosed with diabetes I got a food scale. I was a freshman in college and had struggled with times of obsessing over calories in high school. Suddenly I was sanctioned to restrict my food (albeit based on carbohydrates, not calories) in the name of blood glucose management. While I actually did learn a lot about carbohydrate counting that has been beneficial for me throughout my time with diabetes, it also contributed to the culture of restriction I was building for myself around diabetes management. And chronic conditions rarely visit alone – so I amassed other restrictions and before long I was running into many invisible walls hoping that if I could just stay within them, I would feel great.

These last few years, maybe starting in the height of the pandemic, have been some of my least restricted when it comes to diabetes. And I’m happy with my current blood glucose ‘control,’ aka levels. I want to be clear that this doesn’t mean that I abandoned blood glucose targets or stopped counting carbs or bolusing when I eat or any of the other self-management tasks, it just means that I loosened my grip on achieving blood glucose perfection. Sometimes this meant that I rested instead of taking a walk. That I ate foods I would not have eaten at other points in my diabetes journey, just because others were having it and I wanted to share. That I didn’t feel bad about having to correct for it later. Sometimes I did still feel bad for it, but I didn’t let that stop me from making that brave choice. I loosened my grip on the idea that somehow, if you took everything else away, perfection was even something I had control over.

Because you can’t remove all the other variables from life. There are other goals in my life besides my hemoglobin A1c or time in range that are really important to me and that I want to prioritize. In fact, my motivation for glucose control is to live the life I desire, so constant restriction will never get me there. By the way, food is just an example, not the point here. The point is that there are ways I was trying to control the situation through any means I had available. And for certain aims, that control worked, especially at various points in my diabetes learning journey. But, now when I step back and ask, ‘why the control?’ I’m confronted with the desire to be more fully present with my life. My goals are flexible and interconnected. Maybe I’ll write a book, maybe not. In the moment, other things might feel more important, like making plans with friends or taking a last minute trip with my mom, or doing nothing with a cup of tea.

*This blog contains my personal reflections on my journey only. I am not a medical provider and nothing in this blog is intended to serve as medical advice.

New Chapter

I love starting new things. I am what I would describe as a starter. Maybe that’s why I haven’t been writing lately, because I’ve been engrossed in new projects. But I’m always grateful when I return to older interests and pursuits. It’s a relief knowing that although maybe it is a long arc, I do circle back around to what I’ve invested in previously.

The new thing that I have on my horizons is really a culmination of many elements that have flowed together in my life. In about three weeks, I’m beginning a Master of Clinical Mental Health Counseling Program. It’s a two year program, after which I hope to create a multidimensional counseling practice, that involves in-person, written, and audio support. My focus is, as it has been for the past 10+ years, supporting people with chronic conditions, especially individuals living through acute or chronic instability.

My mission, as far as I’ve defined it, is to help people with chronic conditions live healthier and more joyful lives. My vision is that people with chronic conditions, which is really, at one point or another, all of us, have the time, skills, and support they need to care for their health, pursue joy and creativity, and nurture meaningful relationships.

Care for their health – I used to have a more prescriptive idea about what this meant, but that’s no longer the way I see health with diabetes or other chronic conditions. Sometimes caring for our health means moving more, sometimes it means moving less. Sometimes caring for my health means having ice cream with people I love and bolusing for it and going high anyway. Sometimes that’s what health means for me. My New Years Resolution this year was to eat more cheese. I’ve accomplished it well so far.

Health is also an individually and culturally personal concept. I’ve been proud to work for a diabetes advocacy organization over the past two years that recognizes this and creates space for its volunteers and supporters to define individually what health means and pursue that ideal as their right.

More about the specifics of the vision coming later as I’m sure it will change anyway, but broadly I believe that finding health, joy, and meaning as a society requires deep respect and care for the Earth as our sustainer. In this next chapter, I am excited to weave my original passion for environmental connection and care with my less expected calling of health and well-being with chronic conditions.

Blood glucose and the stress response

My travels to Ohio last weekend were more exciting, but very related to, this post’s title. I have been less interested in travel over the past year, as the COVID overlay has made everything just a little bit more tiring, both in the lead up and the recovery. Wearing a mask all day in the airport, making sure I understand the ever-changing travel requirements, and just being worried in general about the virus has discouraged me. But this past weekend I was happy to be getting out of NC and headed to Columbus for a dear friend’s wedding.

I arrived at the airport a little less than 2 hrs early and made it through security in less than 15 minutes. I settled into the gate to wait for my departure, when it became clear that the flight would be slightly delayed. My connection would be tight, but I’ve made tighter, so it didn’t seem problematic. But then the flight was delayed further. Now we would be arriving at my connecting departure time. Obviously, this would not do.

Before learning that there was no way I would make my connection, I had been entertaining myself by scrolling through my mind to see if I could find something to worry about. I get this way on travel days. I think it comes from the necessary process of asking myself, “do I have everything I need to survive over the next X days?” I usually stick a post-it note inside my front door: “insulin; a way to get insulin into my body; test strips, poker (lancet device), and backup meter; charging cord; contacts; glasses.” If I’ve got this stuff, I’m gonna survive, so I’m good to go. Still, the packing and double-checking leaves me with this feeling of, I’ve surely forgotten something important and, subsequently, a vague sense of unease. But, what I love about travel is that it’s unpredictability almost always jolts me into the present.

This was true when I learned that I would not be making my connecting flight, and even truer when the agent on the phone said, “We’re going to do everything we can to help you,” followed by, “I’m sorry, but there’s really nothing we can do,” in the same conversation. There were no seats on later flights that day from Charlotte to Columbus. “Could I fly into Dayton, OH and rent a car?” the airline agent asked. “Only if the airline will pay for it,” I countered. “Oh, I’m not in charge of that, you can write to customer service.”

We all know that when a company that has its own app and operates giant flying machines wishes for you to write somewhere, this means they intend on doing everything they can to not give you any money.

So I declined Dayton and also declined the option of leaving Charlotte at 10:30 pm Friday and arriving in Columbus at 10:30 AM Saturday (“What? how could this even be possible?..” you ask. The layover would have been in Phoenix, AZ. Don’t fly to Phoenix from NC to get to Ohio. Just don’t do it.)

The point of this story isn’t the weird details of how I got to Ohio, although I did make it. Ultimately, I decided to take the risk of getting on the flight (inspired by my previous success) and making it standby for a later afternoon same-day flight. The point of the story though, is what happened to my blood sugar during this whole ordeal.

Graph Alert!

Graph 1 shows my blood sugar during the hours before and after finding out about the flight delay. Notice how I spike around 11:45 and stay above 200 for much of the afternoon.

Graph 2 shows that I had to take 41 units of insulin that day to keep my blood sugar in range. The other bars show a useful comparison of ‘typical’ days.

Now, don’t let me fool you, there are no truly ‘typical’ days with diabetes, but to give you a reference, my average short-acting insulin use per day has been about 25 units a day over the past few weeks. So, even allowing for the necessary amt. of typical variability, 41 units is an extreme anomaly. Graph 3 shows how many units I used on my return day, which went off without a hitch. Graph 4 shows my blood sugar on a more stable Friday, one week later.

What is it about stress that tends to make blood glucose spike and also makes us more resistant to insulin? Well, it comes down to a few things interacting together.

First, let’s disentangle the state of being stressed from various potential stressors. It’s the process of becoming and being stressed that raises blood sugar – aka the response. I like the definition of stress provided in here, “Essentially, stress can be considered as anything that tends to change the control that you have over our body and our emotions.”¹ While I don’t much like this article’s terminology or conclusion, I do like this definition because there is a synthesis that has to happen between a stimulus and the stress response in our body. Some people are stressed by holidays – it’s not that holidays are inherently stressful – it’s our associations with them. When I heard that I would not make my connector, the associations I made were:

I’m going to miss the wedding
I’m going to let all my friends down
I’m going to lose the money I paid for this ticket

All of these thoughts were very paralyzing. I was also low at the time that I was trying to rebook my ticket and literally couldn’t figure out the order I needed to do things in. Interestingly, it was diabetes that got me back on track. Once I recognized that I was low, I stopped frantically flipping between my American Airlines app and my web browser, and hung up the call line I was waiting in. I ate some Annie’s gummy bunnies (sponsor me, Annie’s?) and took some deep breaths. I then realized that I would survive and everything would be fine.

But my blood glucose had already received the signal that it was go time. And in truth, it was. I had to make calls, decisions, perhaps hustle from one gate to the other, so it was great that my body was ready for that. When we get stressed, either physiologically or mentally/emotionally, the body releases certain chemical signals and hormones, namely epinephrine and norepinephrine, to prepare itself to take action.^1,2

Brief aside – I hate the term ‘fight or flight.’ It’s overly binary and it leaves out freeze. Personally, I first exercised freeze, as previously described, and then I chose to fight respectfully on the phone with the first American Airlines rep who I talked to, before moving to schmooze, which is really another key omission in the term. After schmooze, I finally landed on plead, which was really the ticket.

Anyway back to stress hormones. So when the body releases these ‘stress’ hormones, they stimulate the liver to actually produce glucose (what, the liver can make glucose? Read about that here and see some cool diagrams).³The liver releases that glucose into our blood stream, thus raising blood glucose levels.

So at this point, maybe you’re making some conclusions. Perhaps you’ve decided that stress is bad for blood sugar. This used to be my perspective too. Now, however, I would say that it depends. In truth, my body is doing what it’s supposed to do – preparing me to handle a situation. Wow, thank you, body. An important conclusion though, is that your response to stress really matters on a physiological level (I’m looking at you too, people without diabetes). There are a couple of ways I’ve learned to manage the effects of stress that I typically deploy with varying success. During my travel day, I tried to keep some perspective on the issue at hand. I had a support network to help me out if I was stranded, I had a cellphone to call customer service, and above all, I’ve been through things like this before and been just fine. So I reminded myself of that, did some deep breathing, and remembered quicker than I could have that I could handle the situation. The second thing, and this is the most important in my mind related to blood sugar, is that I no longer get as stressed about being stressed as I used to. Earlier on in my diabetes days, I would be watching my blood sugar climb over the course of the day and get so distressed about higher than normal levels. This would then perpetuate the stress cycle and I’d be left with higher than usual blood glucose levels for days. I think that over the course of my time with diabetes, I’ve lessened my expectations for consistency in how I feel day to day, moment to moment. I’ve also tried to let go of that idea of perfect, normal blood sugar, and employ more gratitude for my body’s efforts to get back to stability. I don’t always succeed, but it’s been a relief to try.

The sources linked here will provide you with more information, but remember that no source is perfect or absolutely complete and that no one person’s experience of diabetes is representative of the whole.

People with and people without diabetes, please let me know in the comments how your blood sugar/body reacts to stress and some of the ways you deal with it!

Sources:

“And the pitch, it’s a delayed flight! She knocks that stressor out of the park!”

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.

Mining the World

On one of my final days before moving out of the condo I had lived in for the past 3 years, I sat on the back patio and stared at the back of the house. We were on the second floor, so I had to look up to see our kitchen window, illuminated by a soft overhead light and filled to the edges with plants. Their leaves and tendrils twisted around each other and threatened to exceed the small space we had offered them. I was excited to move my plants to my new home and have space for even more. That night the moon was halved. I looked around the space where we had hosted birthday parties and family gatherings, grilled, played music, sat in a kiddie pool and listened to cicadas and swatted off mosquitoes. My gaze came to rest on a cedar tree growing close to the base of the structure and suddenly my eyes began to water, and I found I was crying. My tree. I would be leaving my tree. I had this sense that it had become my job to protect the tree and now I was abandoning it. How strange, that just pure proximity had made this tree mine in my mind. As if I had claimed the land that it grew in simply by resting my head on top of it. Starkly, I realized this was certainly not and had never been my tree. If anything, I thought, this tree is not looking to me for protection, but rather looking at me as one more of a revolving series of squatters, encroaching on its root system, tying boats and bikes to its trunk.

Strangely, after seeing the backyard of my new place only one time, I had already claimed the tree that grew behind it as mine. I knew this to be true because I thought of it as, “my new tree.” This is all weird, I know. Why am I even writing about this? But I think it is worthwhile. How could I go so quickly from invading a new space to claiming it completely as mine? And how could it almost evade me that once I had decided to move on, I barely even thought about the elements I had previously claimed that I was now leaving behind?

I’m always mining the world. It’s not that I think I’m alone in this, but I do it, and unconsciously. It’s fundamental to our whole way of living to mine the world. I love my new place – I’ve strung my stuff all around it so that I see myself staring back at me in tangible form. The plants are my favorite. Yet, I don’t even pause to ask if they serve any other purpose than my happiness. Isn’t this kind of atrocious? How would it be different if I belonged to them?

Of course, I know objectively that they serve so many purposes other than my happiness. But I rarely pause to place myself in their world rather than the other way around. I’ve been thinking about this lately in my interactions with the plants (I don’t think this blog post would have come out of any time other than COVID days). This re-situation is easier with bigger beings, like the tree in the backyard. The tree in the yard behind the house where I now live is a maple. It has almost black ridges on its thick bark from age. It is full of cicadas and they are crying out so loudly right now, singing for summer. The sun hits the branches of the tree and spills shade over the green table. I realize that to not claim the tree requires a lot of prose. This is interesting. What was ‘my new tree,’ takes a new shape, its details emerge. I see it more clearly now. And I see me more clearly, as a changing being, without as much need to claim the boundaries of the space or the details of the moment.

Independence from expectations

It’s time like these I remember again that everything is uncertain, always. I thought I had grasped that concept before, but the pandemic has taken it to a whole new level. See before, I was thinking about it from within the microcosm of my life; like, everything is uncertain: you never know when you’ll be diagnosed with a chronic condition, or lose your job, or win a gift certificate to a barbecue restaurant from a folk festival raffle. You just never know! I didn’t expect to have to think about it on a macro level: everything is uncertain, you never know when the planet itself will be diagnosed with a chronic condition, when millions of people’s jobs will be dissolved, when the foundation of festivals, concerts, weddings, funerals, the celebrations and ceremonies we build our lives around, will fall away, leaving us…stripped down, unadorned by the trappings of tradition.

I’m thinking about this on the Fourth of July, aka Independence Day. When this all began, I remember being intensely sad about the world. Then I remember allowing myself to also feel sad about all of the things I was looking forward to in this year that would clearly not be happening. But now, longing for trips, conferences, concerts, feels sort of like longing for a sunroof when you don’t have a car. What an amazing exercise in becoming aware of everything we were taking for granted! Layers upon layers of granted. Not just the feelings, the forces, that we take for granted, like love, but all of the ways that we acknowledge it in our daily lives. As another friend is likely postponing her wedding ceremony, I think about how invisible so many of the things that make life rich are until they are unavailable. When I first moved to town and didn’t know anyone, I was lonely. I had a strong community in Asheville and it’s a hugging place, so I would hug or pat on the back or sit next to a friend nearly everyday. In my new town, before friendships had really been made, I was operating at a closeness deficit. I remember riding the crowded bus home from school and feeling so comforted just by being near to other people. In our present reality we are separated by a force field of threat from friends and strangers, and this calls into question what being close to other people really does for us. How being separate makes us, in a way, trapped with ourselves. And for many, I’m sure it makes us long to reach out and connect in a small, simple way, like a hug or a conversation close enough to see the other person’s pupils, that we didn’t even know was so meaningful.

Each year on July 4th I like to declare myself independent from something that’s holding me back. This year, I’m declaring myself independent from my expectations for how things were supposed to go and how they are supposed to be in general. But bigger than that, I’m declaring independence from my expectations about the ingredients of happiness within a given experience. I’m letting the word happiness stand in for whatever pure, unadulterated feeling is necessary for meaningfulness. To be clear, adequate resources, shelter, relative security, all of these are necessary for what we think of as long-term happiness. But in the moment, the kind of food on a shared table, the airplane ticket to a far-off place, the goal and the striving for the next work or life accomplishment, all seem starkly independent from the point. And, knowing that what I really miss now is the ease of connection, once all those other things are accessible again, I hope to remember that.

Slowing Down

Why haven’t I been writing? Months ago I promised a Chapter 2 to follow my last post about Costa Rica. I thought that more posts would follow that – about traveling around the globe for friends’ weddings, conferences, and maybe a little vacation. I had a busy year planned. And yet, now, here it is nearly July and I find I haven’t been more than 30 miles from my home since February.

Slowing Down.

What I’ve been doing during this time of social distancing. It’s a privilege that I have as a single woman with no children or even pets to care for. Up until recently I had a job, which made things still feel busy. I don’t have a full-time job at the moment, and I’m trying to figure out what my life and my schedule looks like without it.

Slowing down. A reset. I’ve been resisting this idea hard. As I think back over the last couple of years, I feel like I’ve been living my life in leaps and bounds. Sprinting towards the next goal without pausing at each milestone along the way. And I wouldn’t say this is unique to me or has even been by choice.

A big part of it is the society we live in. Things move fast – too fast sometimes for reflection. Maybe part of it too has been the pressure of diabetes. For 14 yrs I’ve lived my life on a schedule aimed at balance. A consistent wake time, consistent carbs at each meal, daily exercise everyday, sometimes multiple times a day, whether I really feel like it or not. And the self-improvement articles and health educators (like myself) will often tell you that just this is the recipe for health. “Once you get going you’ll feel better.” “Exercise is the best medicine.” And I actually believe it’s true. But I think this mindset, combined with a taxing chronic disease and a personality type leaning towards perfectionism can get out of control.

I certainly feel like I’m running on vespers sometimes. Running on the diabetes treadmill: time to eat, first take insulin. Now blood sugar will likely spike even if I called the dose right, so it’s time to walk. Maybe walked a little too much, time to eat a snack, and that’s just one meal cycle. That doesn’t take into account sleep and rest; sometimes I want more of it, but I know if I linger in bed my blood sugar will start to rise or maybe it’s falling and I’ll end up feeling worse later. There’s no easy answer. I’m not looking for one. I’m just recognizing the cycle that I feel like I’ve been on for a long time.

And this cycle bleeds over into other realms of my life. Pushing past what feels right into the territory of ‘shoulds.’ Lately it’s started to feel right to write again, but about what I don’t know. Because life doesn’t look like any of us thought it would. So I’m going to keep taking it day by day. Maybe this is Chapter 2 – because Chapter 1 was all about finding myself for the first time as a woman with diabetes in a new country, with a new group of people. And this Chapter is about meeting myself here, now, with very little else to distract me. I mean apart from the imminent dread of the news, but looking inward, maybe this is an opportunity for growth, as they say. Or just an opportunity to slow down and feel.

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!