I am never naked.

If you scroll down in this post, you’re going to see a topless/nearly naked picture of me, as well as a few others that show quite a bit of skin. They are meant to challenge you to think about what I’m about to write. Please read first, then scroll if you want (but do not scroll if you think mostly nude photos of me will offend you).

I was diagnosed with type 1 diabetes at age 10. It meant that, at the age of 10, my body was no longer my own. It became the property of diabetes, of medicine, of science, of the devices it takes to keep me alive.

When I was first diagnosed and still in the intensive care unit, every part of my body was poked and prodded. I ended up with an IV in one of my jugular veins because none of the rest of my veins were stable enough to support a line. My clothes had been ripped off my body to make it more accessible to save. My necklace had been cut from throat so it didn’t get in the way. My body was just that – a body to save. Not a person. Not my own. 

From that moment forward, I saw my body as separate from myself. It is something I must take care of, the only vessel I have to navigate around this planet, but it’s not been ME since my diagnosis.

From the age of 11, my endocrinologists started lifting up my shirt and unbuttoning my pants to check that my body appeared to be developing as it should. The endocrine system, which diabetes affects, also affects human development, but I didn’t really understand that at the time. I just knew it made me uncomfortable, so I detached. If my body wasn’t my own, there was nothing to be uncomfortable about. It was medicine. It was science. It wasn’t me.

Any time I’ve had to switch back over to shots from my insulin pump, or add in a new medicine taken via syringes, my detachment must move to a higher level. The needles always leave little bruises in their wake – along my thighs, arms, and stomach. When I change out my insulin pump and continuous glucose monitor sites, they leave bumps and scars. If I internalized it, all I would see is a battlefield.

The hardest thing, though – oddly – is the feeling that I never get to be fully naked.

On a date when I was in my early 20s, we ended up in a park at night, in the rain. It was late spring – warm, slightly humid, and late enough that we were the only ones there. My date dared me to take my clothes off and run in the rain. It’s not shyness that held me back, or fear that anything would happen to me. It was the fact that I knew my insulin pump would still be attached, so naked wouldn’t equal free. I was still tethered.

I hated that I couldn’t be that free spirit. I hate that, when I get out of bed in the morning, my insulin pump comes swinging after me unless I remember to grab it first. I hate that I am always at least in shorts because I need a pocket to put my pump in. I hate that when I run, my insulin pump pulls my pants down (no matter how tight of a pair I’ve shimmied into). I hate that people stare at the continuous glucose monitor on my arm instead of just asking me about it. I hate that I can’t wear a dress without thinking about where my pump would go.

These are things that should seem small. I am lucky to have these devices, and I am lucky that they are no longer the backpacks of 30 years ago. But they are still always there and despite their small profiles, they manage to pack on such a weight.

I get asked a lot what a cure would mean for me. It would be nice to be able to eat what and when I want, but I’m honestly glad that diabetes has taught me how to nourish my body properly. It would be nice to not have to calculate carbs and insulin doses, but I’ve been doing that in my head for two decades – it’s not exactly a burden anymore. It would be nice to not have to deal with needles, which I hate, but they don’t usually hurt. They’re just reminders. More than anything, I think not having type 1 diabetes would mean finally being able to reclaim my body as my own.

In the pictures below, you may see a naked body. You may see tattoos or curves or whatever else your eyes are drawn to, but I see the devices that keep me alive. My insulin pump, that I’ve rarely been without since I was 11. My continuous glucose monitor, that will wake me up in the middle of the night if my blood sugar is trending in a way that could end in a seizure. I’ve not been without some sort of device on my body 24/7 since December 10, 1998. That’s what I see when I look at these. Lack of freedom. 

I can share these pictures with ease because, to me, my body is not my own. There is a certain level of grief that comes with acknowledging that. But these pictures are, in a way, helping me reclaim it. Thank you for coming along on that journey. 

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14 thoughts on “I am never naked.

  1. Im so proud of you…
    Your courage knows no bounds.
    I learn so much from everything you say or write.
    I am so proud of you…
    (Did I already say that?)

  2. Thank you for sharing your story. Your gift helps those who do not have to struggle with this disease, or any other for that matter, understand what those who do have it must go through for just basic survival. You are amazing in every way. Besos Lala!

  3. How beautifully you share your perspective. My 14 year-old son was just diagnosed 2 months ago. Of course, every individual has their unique experience & way of processing it, but I so appreciate you sharing yours. I’m trying my best to understand how my son might be feeling, & although I’m a painfully empathetic person, no one can never fully understand someone else’s experience. I’m hoping my son will consider writing his thoughts about it, even if only to help himself process this journey of his new normal, but maybe it could help someone else…as yours is! Can’t wait to get my hands on your book!

    1. Thank you so much Karen ❤ I'm so sorry to hear of your son's diagnosis, but am incredibly proud that you've jumped right in getting involved. I'm lucky to have a lot of friends with T1D and it's so interesting to hear all of the things that some of us have MAJOR issue with, and some of us just don't have any issue with at all. You're completely right, every person's experience is so different.

      I do know that when I was first diagnosed, none of this really hit me in the same way. It's not until the last 5 years or so (and I'm two decades in with T1D) that some of this has started to weigh on me and I started writing about my health (all throughout my teenage years and early 20s I wrote a lot, but about normal teenage/young adult life craziness haha). But at the same time, new tech over these last few years has given me a lot more health freedom/flexibility too, which is awesome. So it's interesting 🙂 It will always be a process.

      Do let me know if you or your son need any help or resources as well. I personally love the DOC – diabetes online community! It helped me understand that every case of T1D is different and that the things doctors were telling me weren't necessarily always the experience every T1D is having – I recommend starting at http://diabetessocmed.com/about/ – Cherise, who started it, is amazing.

      All the best Karen ❤
      Lala

  4. I can completely understand the way you feel. I’ve only been tethered for 4.5 years, but it feels like a lifetime. My small happiness is when I can sneak in a ‘naked’ shower 🙂 but then I feel the rush to connect immediately. Its a win/loose.

    1. Shower time is the best time! That rush to reconnect is such an odd one. I remember the first time a nurse took my pump in an appointment to go download my data I almost had a panic attack – I wasn’t used to being without it. It becomes such a known lifeline that it’s almost hard to be without it, as much as it’s hard to be constantly connected. ❤

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