Need.

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Last week I wrote down everything I need right now.

Things I need to do, things I need to buy, things I need to plan for, things I need from other people, etc., etc. The list was–I am not kidding–two and a half full pages. In paragraph form. Because I didn’t want to make a *to-do list.* That would just overwhelm me and I knew I’d find myself adding a bunch of things I’d already done so I could get the high of crossing something off of said list. I didn’t need that. This wasn’t about getting anything done. It was about simply acknowledging everything swimming through my brain the past few weeks–all of it, how much of it, the sheer weight of it.

A list doesn’t pour the way a paragraph does, and what I needed more than anything was to pour.

Need can be tricky. The churning seas of Need and Want spill into each other and, because my mind works in a very All or Nothing sort of fashion, when I make a to-do list I often suddenly feel as if I NEED to do/have/receive all of these things immediately, right this very second, ready set go. My expectations for myself and for the way life works are highly unachievable.

A few days ago, I was sitting outside on a friend’s balcony, because I was house/cat-sitting for the week. I’d just gotten off work, had gone straight from work to my house to pick up some stuff I forgot (insulin, pretty important) and do a load of laundry. Then I went back to the friend’s house to maybe sit down for a second and also feed the cats. I’d been going, going, going all day, all week, all month.

From her balcony, I could see my car parked across the street. I started wondering to myself if my tires didn’t look a little flat, and remembered the check engine light that’s been dancing on and off lately, and that weird, semi-dramatic sound it’s been making when I accelerate. And so begun the spiral: I need to put air in my tires. And I need to get my car looked at ASAP (on Friday, my one day off of work per week.) And where am I going to live next year? And why haven’t I started looking into grad school? And I need to call my grandparents–I am the worst granddaughter in the world. And speaking of the world, what is my place in it? What am I even doing? How am I helping? What have I been doing for the past 24.5 years?

As you see, things can start to get a little out of hand.

In this particular moment, though, my thoughts started to slide through my mind like molasses, my eyes locked onto one particular fuschia plant for too long, and my hands started to tremble. Low blood sugar. Because in all of my working and laundrying and existential-crisising on the balcony, I’d forgotten to eat.

I went inside and grabbed a juice box and sat on the couch, drinking it and waiting for my mind and body to come back to me. 10, 15, 20 minutes… and all I could do was sit there until the sugar swam, until the weakness passed, until I was myself again.

I cannot emphasize this enough: if there is one thing in the world that can bring me back to reality–to the nature of real, true, life-or-death Need–it is low blood sugar. Nothing else matters, nothing else can matter, until I take the necessary steps to take care of myself.

By the time my blood sugar had risen to a functioning level, and I stood up off of the couch, I’d realized something. All I can focus on right now is taking care of myself, I thought. It is just the only thing right now.

You might be thinking, “This really isn’t some grand revelation. It is pretty basic shit, Sarah.” But for me (and for many people I’ve discussed it with endlessly), this is no small task.

I want to do and be everything all the time, for myself and for everyone else. I want my to-do list to be all scratched out at the end of each day. I want to say Yes to every invitation and to never have to ask for anyone’s help. This is how I have lived a lot of my life: saying Yes when I really felt No, because it is easier to just get through it rather than explain to someone why I can’t or don’t want to.  And then there is… the not asking for help. My fear and horror of possibly becoming a burden or an inconvenience to someone else often sends me running for the hills, to my own small world of one, before I’ve even reached out a hand. But I’m working on it.

“You can’t possibly foresee what other people can or cannot handle,” someone told me recently. “Reach out for help if you need it. Just ask. And if they can’t, I promise you someone else can.”

According to my aforementioned 2.5 page letter, I need A WHOLE LOT of things.

But when I really scale it down to the things I need in order to take care of myself these days, a few things are concrete and I can walk away from the rest, at least for now. This blog, for example, I have mostly stepped away from during the past few months, yet it is still here waiting for me when I have a little free time on a Sunday afternoon. The invitations I’ve declined may have disappointed a few people, but I’ve been honest, and like true friends, they understand.­­­­ So maybe I should write down all the things I don’t need to work myself up about doing right this very second. That list–who knew?–could go on and on.

Right now I need to truly, painstakingly slow down and take care of myself.

Let the people who can, help me do it.

 

When Our Foundation Can No Longer Hold Us

There are times when I need to keep diabetes at arm’s length.

The past few months, and still now, honestly, have been a time like this.

The funny thing about chronic illness is that it never goes away. (Wait, that’s actually not funny. Anyway.) Even when our life is a tornado of 500mph winds, chronic illness is there as the furniture whirls around us. It is there as the walls crumble, as our roof tears away and we are left shelterless in the rubble, and it is there at our feet when the dust settles.

It’s actually kind of unbelievable how THERE it always is. How there it will always be. Sometimes we need a break so badly from these heavy demands, this weight, and the truth is that we simply do not get that.

But sometimes I push diabetes as far away as I can bear. As far away as I can get from something that exists solely and overwhelmingly inside of my body.

This is to say… I cannot ever get very far away from it.

But sometimes I can keep it at arm’s length… still acknowledging it, tending to it, but not dwelling or overanalyzing or agonizing over it. I did enough of that these past winter months. I really did.

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I took this at Gallery 5 during March First Fridays. I wish I knew who to credit it to.

This past fall/winter was a difficult one for me. I moved back to Richmond in August with the intention to “heal.” Originally, I thought I’d go straight from Amsterdam to Portland or Austin or wherever the wind took me, but then decided another year in Richmond wouldn’t kill me (and that another year of avoiding things might.) I knew I was standing on an ever-weakening foundation as far as my health (and life) management went, and I thought one more year (just one! I consoled myself often!) in my sweet, dirty, artsy college city surrounded by my best friends would be good for me.

I imagined myself moving into a beautiful house in the Fan, finding a great, reliable, inspiring, full-time job immediately, seamlessly getting health insurance in the US again, going to the million doctors appointments I’d skipped over while living in Europe, saving piles and piles of money, etc. I imagined–and I am not exaggerating–that I would have all of this wrapped up by Christmas. And that then, I could take my racked-up savings and deeply-cared-for body and get the hell out of town, back to all those beautiful faraway places. But in a better place, physically and mentally. Me, but so much better.

How it really went down, in a condensed version, is something like this: I ended up working a part time job that I hated, paying $300 a month for health insurance until I could not afford it any longer (this didn’t take long) and was forced to drop it entirely in October. This quickly dashed my plans of doctors appointments I hadn’t  even made yet and money-saving and the smooth grand piano idea I had of what “healing” would look like. My reality unraveled me. It is a very scary and dangerous place to be, to live with a chronic illness–a life-threatening illness–and to not have the safety net of health insurance, or the funds to go to the doctor or even buy The Medicine You Need In Order To Live. Or… to buy groceries, for that matter. These days were very dark for me. I wrote about them a bit as they were happening (here, for example) but honestly, I’m going to skim past them right now. You understand.

In January, I managed to get health insurance again. I was able to see an endocrinologist and make other appointments I needed. I was able to see that I had some very necessary changes to make, though actually making the changes is a very-much-still-unfolding story of its own. In March, I got a job that I am very grateful to have, that I enjoy going to and love learning from. I joined a weekly writing class that I adore. I got off the waitlist for a writing workshop in California in June–a vast bright light and adventure to look forward to.

The weather warms. I’m finally making the self-care space to feel better that I’d truly believed would begin when I snapped my fingers last August, and would be wrapped up painlessly in a tidy bow after a few months, when I’d decided I was done with it. But shit, these things take time. And work.

I’m learning a lot these days, and most of it has nothing to do with diabetes. Which is to say, it also has everything to do with diabetes, because illness is entwined so intricately into my daily life. How very There it always is.

Nothing looks like I thought it would at this point, but I kind of have to trust that I am in the right place, where I need to be in this moment. Breaking myself open, staying put in this city, my home, even longer now. Everything feels uncomfortable, often. It feels vulnerable and thick and complicated. And necessary. When our foundation can no longer hold us, we have to get down close to it, onto our knees, and build it back up with our bare hands.

The path is not linear and life is unimaginable, which is not a bad thing.

This is where I find myself these days.

 

Honeyed

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i’ve had an endless stream of low blood sugars for the past three days and i’ve officially run out of juice boxes. no energy for a grocery run, so i resort to spoonfuls of honey. i’m piling layers of sticky sweet on metal and as i bring it towards my mouth my trembling hand tilts and a string of honey pours down my chest, thighs, tops of my feet.

i’m days deep in feeling like a sugar-frenzied shell of myself and i am quite literally dripping in the thing that will save my life again and again and again.

diabetes mellitus: etymologically, honeyed siphon.

me: shaking there alone by the kitchen sink trying to save myself over and over.

and sugar: the threshold of my life, rolling off of my body and hitting the floor.

 


 

(wrote this a few months ago. took the picture in 2012, while living in France.)

 

Tiny Revolutions: Burnout and Trying

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It is a Monday in February and there is a wildfire of guilt burning through me. I feel like I’m not doing any good for myself; that I’m the worst; that it is all my fault that I feel so terrible because I’m just never trying hard enough. I’ve done everything to myself and I deserve it.

It is a snow day and I’ve been cooped up in the house. I’m sitting on my couch with my roommates; they’re watching The Grammys and I’m looking at my Dexcom, whose signal has been squirrely all day. It is past its time limit of accuracy–the sensor is tired and I must admit to myself that I need to change it. The lack of activity on this day (and other numerous factors) has led my blood sugar to swing high and low and finally stubbornly set up camp around 200.

I swiftly dive into the rabbit hole of Things I Have Not Done Right Lately: the not-eating-enough, the eating pizza, that one delayed bolus, that other day I forgot to take Lantus. The staying up really late Saturday and the no exercise and the lying in bed. The being too tired to prepare food, thus the eating greasy crap on my lunch break. The guesstimation boluses. The A1C that is so much lower than it was a year before, but could be much lower still.

Fuck, I think to myself, I need to start TRYING.

It takes me many minutes of quiet rabbit-hole berating before I stop and begin to claw myself back into reality, thinking:

Wait, I am trying. What the hell else would all of this be?

I am fucking trying.

Earlier that morning, when my Dexcom woke me up at 4am because my blood sugar spiked to 300, I sat up in bed, turned on the light and gave myself a subcutaneous injection of Humalog into my stomach. I woke up around 9am and immediately pricked my finger, calibrated my Dexcom and deliberated whether I should eat before I took a shower because I’m on the low side. I ate first. I bolused. I took vitamins.

This is how, on the Type 1 diabetes front, we move through days:

waking, counting, checking, pricking, injecting, correcting, comparing…

In another word: Trying.

Last month, one of my friends tried to quit smoking. I overheard another friend ask him how it was going, and he sighed and said, “It’s not. I smoked 5 cigarettes in January. I still crave them.” You could see the self-disappointment, guilt, bitterness on his face. Another friend chimed in, “Whoa, whoa, whoa. You used to smoke 5 cigarettes every day. That matters. Don’t sell yourself short.”

The results vary from day to day with diabetes, because not a circumstance exists that doesn’t affect this disease, and this world is full of circumstances. Some days are smooth as glass and some are sandpaper, rubbing us raw. Those sandpaper days are not because we are not trying.

Diabetes is a tightrope of contradiction: I have control/ I do not have control; I am sick/ I am well; This is my fault/ This is not my fault. There is a vast galaxy of complex truths existing between those broad statements. None of it is black and white. It really isn’t a question of whether or not we are trying. We are.

When you check your blood sugar and it is 317, what is your first reaction?

Do you think, What caused this?

Or do you think, What did/ didn’t I do to cause this?

There is a difference.

I, like many people, am absurdly hard on myself– much harder on myself than I am on other people. If my friend with T1D texted me and said, “My blood sugar has been all over the place today” I would never respond saying, “Well what did you do wrong? Maybe you’re not trying hard enough.” If someone responded to me like that, I would need to reevaluate why this person is in my life. So why is it that I do this with myself?

Like diabetes itself, personal daily efforts and needs are different for everyone and are also always changing.

For you today, Trying may be as seemingly simple as checking your blood sugar one time instead of not at all. You may be struggling very much right now, with depression or burnout or any number of reasons that has made diabetes management feel difficult, or unbearable, even. That one blood check is huge. It is progress, a movement that carries us from A to B. It matters so much. Do not disparage that. 

For me today, so far, Trying has been the fingers pricks/injections, and also the changing of my Dexcom sensor as soon as I woke up and saw the ridiculous unreliability of this screen:

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When this happened last month, I walked around for 8 days with a broken sensor still attached to my leg because I couldn’t bring myself to replace it and I also couldn’t bring myself to take it off. It just was; a dead thing still under my skin that I carried with me everywhere.

For me these days, Trying looks like feeding my body what it needs, taking long walks, counting carbs more accurately and being kinder to myself mentally and physically. Being gentler. These movements require patience, compassion, room for error and a million self-reminders that… Yes, this is Trying; this is life.

These tiny revolutions are life.

Illness & Personality

Do you know your Myers Briggs personality type?

It’s based on Jung’s theory of psychological types, in which there are 16 different combinations, based on these 8 characteristics:

Introverted or Extroverted 

Intuitive or Sensing 

Thinking or Feeling 

Judging or Perceiving 

Ask any of my family or friends what their type is, and they’ll be able to tell you. I’ve made them all take the (free version/ unofficial) test. I find it fascinating and I feel like knowing other people’s types (and my own) allows me to better understand actions, reactions, etc. It really has helped me in more deeply recognizing certain qualities in myself/other people. When I was living in Amsterdam I even went to a monthly Myers-Briggs Personality Type MeetUp (yeah, really) where we had all kinds of interesting psychological convo.

If you take one of the free tests (I usually send people to this one) you can read breakdowns of your type, strengths, weaknesses, career/relationship stuff, etc. It is interesting!

I’m INFP–The Healer–(Introverted, iNtuitive, Feeling, Perceiving) and for me it’s pretty dead-on…

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So, the reason I’m bringing this up is… while cooped up in my house today trying to recover from 12 hours of wild blood sugars and no sleep, I stumbled upon this: What Is Your Diabetes Personality Type? 

I mean, take away from it what you will or won’t, but I found mine to ring true. (Funny, it even suggested I write a blog haha) —

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Sometimes it’s just nice to read this kind of thing and relate to it, nod your head, feel recognized.

Illness & Personality was originally published on Coffee & Insulin

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