A Story About Type 1 Diabetes

I smelled it.

Untreated or undiagnosed or unacknowledged Type 1 Diabetes smells like fingernail polish remover, and I smelled that on my 14-year old daughter, Peanut, three years ago today.

I was the only one who smelled it, and I smelled it for a week, on her breath and on her skin. I sniffed her for a week while she slept—and she was sleeping a lot—while she ate, while she watched TV. This irritated her a great deal, and I can see why. Every time she turned around, there I was with my nose in her hair, or trying to get a whiff of her breath. I knew something was wrong.

There were other symptoms, sure. She was losing weight which could be explained away by her age—14. She was hormonal. Her body was changing. Things were shifting as she grew taller. She was eating strange things like Frosted Flakes or Snickers candy bars, and she was drinking soda and lots and lots and lots of water. She peed all the time. Of course, I attributed the peeing to the water drinking and I attributed the water drinking to the weight loss—I thought it was a strategy, one I had used my entire life; drink more water in order to fill up and not eat so much food.

It wasn’t a strategy.

The night before the diagnosis, Thursday, March 14th, the fingernail polish remover smell rippled around Peanut like a gas leak, and so I asked a lot more people to smell Peanut’s breath because she and I and about 20 family cousins and grandparents and aunts and uncles were at a charity bingo that would raise money for cancer research. Not one aunt or uncle or grandparent or cousin smelled that fingernail polish remover smell on her breath which should have consoled me; however, it did not console me because I COULD smell it; at this point, I thought I could see it.

I didn’t sleep that night because I was busy shuffling into Peanut’s room to smell her. Did I really smell it? Each time I leaned in for another sniff, I answered the question. Yes, I still smell it. In the morning before I woke her, I smelled her again, and knew I would have to do something. I woke her, took her to school, and then googled this: “Breath that smells like fingernail polish remover.”

And there was Dr. Oz. Dr. Oz and diabetes.

Now most of the time, I’m glad to see Dr. Oz. He is a familiar doctor face with interesting ideas and strategies for good health. He’s a friend of Oprah’s! In fact, a few years ago, I saw his face in an ad for Acai Berry supplements for weight loss, and I bought the Acai berry supplements for weight loss because I thought that if Dr. Oz allowed his face to be used in the ad, Acai berry supplements must work. But this time Dr. Oz’s face (and his words, I believe) donned an article about diabetes. Dr. Oz said that a fingernail polish remover smell was ketones and it could mean diabetes. Just like before when he was selling Acai Berry supplements, I believed Dr. Oz about the diabetes. I finally knew why my daughter gave off the distinct scent of fingernail polish remover even though she never painted her fingernails and thus had no reason to be removing polish.

I called our pediatrician’s office after the Google thing, and told the receptionist the story about the fingernail polish remover and the Googling I had done and I said that I suspected, but wasn’t sure, of course, that Peanut’s blood sugar might be high. I asked her if our doctor would order a glucose test. The receptionist promised to talk to the doctor and get back to me.

And then I took a walk. You see, there was a part of me that already knew Peanut had diabetes and there was a part of me that refused to believe it could be true. The part of me that refused to believe it could be true went out for a nice walk and saw some things that seemed like omens–crows that may have been plain old black birds, gray skies and intermittent sun. I knew and I didn’t know. I don’t remember how long I walked while I waited for the phone call, but soon the phone I carried rang, and the receptionist said I should retrieve my daughter and bring her in for a blood test.

The day sped up. I called the principal, my sister, and asked her to have Peanut ready, and when I made it to the school, Peanut was sitting pale and drawn in my sister’s office. On the way to the blood test, I explained that we were going to rule out diabetes. Or maybe I didn’t even say diabetes at all. I was still toying with the slight chance that I was a worrywart with a tumor that caused me to smell strange scents on other people. Can’t tumors cause you to smell strange scents?

At the clinic, a lab tech drew blood, and then Peanut and I went out for lunch before I dropped her off at school. Back at home I sat at my computer reading over and over the same symptoms of diabetes I had read over and over all morning whenever I had a chance. Within ten minutes the doctor called. He was and still is a kind man, and as a conversation opener he asked me what had been going on with Peanut. I told him about the weight loss and the water drinking and the strange fingernail polish remover smell that prompted me to bring her in. And after I listed these symptoms, hoping that I didn’t sound like an Internet website, the doctor said he believed that Peanut did have diabetes because her blood sugar was over 300 (a regular blood sugar a few hours after breakfast would have been under 100).

And not only did Peanut most likely have diabetes, but we would need to take her to a hospital. I listened and agreed to the hospital bit, even the part where he said she would need to go to Children’s Hospital in St. Louis. Then he paused and said that he hoped I understood that he meant now. That she would have to go to a hospital now. I think I did understand this in a way, but in another way I didn’t understand it in that as long as we were talking about it we didn’t have to start acting. But he made it clear by saying that I needed to go get my daughter right now from the school and I needed to take her to the E-room of our local hospital, so they could stabilize her before putting her in an ambulance to leave for St. Louis.

He said stabilize her.

I remained calm, outwardly. But I said stabilize her over and over. I said to my husband who was home for lunch. Go get finished up at work while I pick Peanut up and take her to the hospital, so they can stabilize her. I called my parents, I’m taking Peanut to the hospital. She has diabetes, and they need to stabilize her. I called the principal and told her, Get Peanut out of class, I’m on my way to get her. We have to go to the hospital, so they can stabilize her.

Stabilize her scared the shit out of me. Stabilize her is not something you want others to have to do to your daughter.

Peanut, in desperate need of stabilizing, looked very scared when I picked her up.

My husband met us at the hospital where we talked to one of those traveling ER docs. He was short with thin dark hair and squinty dark eyes. He hooked Peanut up to an IV so she could receive enough insulin to stabilize her. While we waited for the stabilizing of Peanut, the little doctor told us something I still don’t understand. He explained with lots of hand movement and an encouraging smile that Peanut was lucky to have the good type of diabetes. And I still wonder if he meant she was lucky not to have the sort of diabetes in which there is a stigma—the sort of diabetes folks think you have given to yourself because you have eaten too much or haven’t watched your weight. And I thought then and I still think now that it is so much bullshit to blame people for their illnesses, and I didn’t listen to him a whole lot after that although it is entirely possible that I wasn’t listening very well to begin with, and perhaps I got confused about what he was trying to tell me because my baby was lying in a hospital bed and was getting read to be taken to a children’s hospital almost three hours away, and they were still stabilizing her.

And when they finally stabilized my daughter, they rolled her into the back of an ambulance, and my husband and I got into our van and drove to St. Louis.

The nice people at the children’s hospital told us we were lucky Peanut was diagnosed on a Friday because diabetes education was unavailable on Sundays, so we had one extra day to learn about taking blood sugars and giving injections and dangerous lows and Diabetic Ketoacidosis. And when we left on Monday afternoon after finishing our education, we didn’t think we knew enough, and we were very worried all the time.

And this hasn’t changed. I remain worried all the time. But when you must, you can push the worry back. And I do this. Sometimes I do this because I am brave and strong and other times I do this because I am drinking wine on a Friday evening.

It seems to me that many illness stories require a big change in the people affected. We like our narratives to prove that getting sick can change our lives for the better. I do not like those sorts of stories because diabetes hasn’t changed our lives for the better in any way. It did change things.

Mostly it stripped me of the illusion that I can control anything, that I can keep my children safe. When I say this, I imagine that people who hear me say it think that I’m wrong, that I can do lots of things right and that it makes a difference, and I’m sure that in the way they are thinking this, they are correct; but what I know is that nothing I did or didn’t do could have changed this. And that is a hard pill to swallow. There is no blame. It’s not about me.

 

Our lives changed three years ago, for sure, but lots didn’t change. For example, Peanut is beautiful, smart, funny, and extremely messy. Her room is a scary scary place. This was true three years ago.

Last night, I read this post aloud to Peanut who sat on the couch next to me, her head on my shoulder. We both cried.

Stories connect us. We tell them to make sense of what we do not understand, and there are times, like this morning, when understanding remains elusive. And still, we try.

 

 

 

 

 

11 thoughts on “A Story About Type 1 Diabetes

  1. This is such a riveting, beautiful, difficult, important piece of writing. Thank you for writing and sharing it — and for the truth of this: “It seems to me that many illness stories require a big change in the people affected. We like our narratives to prove that getting sick can change our lives for the better. I do not like those sorts of stories because diabetes hasn’t changed our lives for the better in any way.”

    Liked by 1 person

    • Jena, thank you so much for this. Before my daughter was diagnosed with a chronic illness, I liked illness stories to be all wrapped up neatly. IT is so much easier, isn’t it, as a person unaffected by chronic illness to believe that those who are have made their peace with it and are better people because of it. I don’t doubt that that does happen; however, I think the truth is often rather different.

      Liked by 1 person

  2. Once again. ..well written. Thank goodness you were aware of the ketosis smell.
    I understand your sentiments concerning the neat package of healing. As you note, this seldom happens. Illiness alters a life forever. Now Peanut as a new reality to deal with forever. So well expressed. Thank you for sharing. Your last paragraph says so much.

    Liked by 1 person

    • Thanks Karen, I know you understand all of this so well. I think illness narratives are so important to the way we see and understand ourselves in the world. Especially today when we, as a society, try to ignore any sign of illness. So glad you are reading!

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  3. Beautifully written and so poignant! I have been living with T1D for 40 years in April and the stories never stop impressing me about how others were diagnosed. Thank you for sharing!

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  4. Thank you for writing this. I was diagnosed with T1D 20 years ago. Nobody suspected this. I was 40 years old, for one thing. But I went into a coma in the lobby of the hospital where my husband’s doctor sent me (I didn’t even have a doctor of my own). My weight had dropped to 88 pounds and the intake nurse could not get a pulse because the hospital had no child-size equipment. The only good thing about the diagnosis was simply getting the diagnosis. After twenty years of this I can definitely say that my life has changed radically, unhappily, for worse, not better. I wrote a (lengthy) doctoral dissertation on illness narratives; that’s how deeply I changed.

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    • Thank you for writing and reading. Your dissertation sounds very interesting. Your story is so scary. Type 1 Diabetes can happen so quickly and so often goes undiagnosed a while in adults. I can’t imagine the grief you experienced at 40 for the way of life that was suddenly gone. I am so glad you commented. Thank you!

      Like

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