Quotes that stick

Having lived about eighty percent of my life with diabetes, I’ve heard a lot. Trust me, I’ve heard some real gems.

Maybe it’s because it’s my nature to let things roll off without bothering me, or maybe it’s just old age —  but I’ve forgotten most of the snarky and ignorant  things that have been said to me.  I’ve forgotten lots of the good stuff, too.  (I find myself constantly referring to my “Bolusing for burgers” post to remember how to handle high-protein meals).

But some stuff sticks.  There are things that people have said – whether three years ago or thirty years ago – that I have never forgotten.  And I don’t think I ever will.

Here are some of those Quotes That Stick, and how they made me feel, and (possibly) why I remember them:

“We’ve got diabetes, and we’re not sharing”


I was at Camp Nejeda, the place where all kids with diabetes in New Jersey end up at least once. There were six or seven of us, side by side, marching diagonally across the field and chanting this line. I’m not sure what really made this stick. Maybe it was the feeling of unity and inclusion that came from the word “we”. Maybe it was the humor of the plural-sounding word “diabetes”, in the same vain as “I’ve got ten cookies”. Or perhaps it was the implicit privilege and selfishness, as in “I’m keeping all of those cookies to myself”.  But I can hear it in my mind, over and over.

 

“It’s a part of your life now”

My pediatric endocrinologist was a part of a teaching hospital. As such, there were a parade of young students who would come in at each appointment to observe and ogle, and after a while they would do exactly what my endocrinologist did moments before he did it. (When it comes to medical exams, two-for-the-price-of-one isn’t all it’s cracked up to me).

Well, this one time, one of the rookies started lecturing me on my diabetes, what it has the potential to do to me, and what I need to keep control of it. The lecture (like most of them) went in one ear and out the other, but I specifically remember those seven words spoken in his accented English.

Oh, how I resented it. I wanted to say ‘What the F do you mean a part of my life now? It’s been a part of my life for five F’ing years and I’ve been dealing with it for a lot longer than you have known about it! How dare you come in here and tell the first diabetic patient you’ve ever seen that my world has to change starting now! It changed long before you came into the picture, A-hole!’

But alas, I was only twelve years old, and I wouldn’t dare use that type of language, so I kept my mouth shut. But I kept the resentment towards those words bottled up deep inside me until today.

 

“You’re the diabetic, not me”

This was probably in my early teens, and I’d probably been in an argument with my father about something I should have been doing but wasn’t, or maybe something I shouldn’t have been doing but had. Either way, it was probably the first moment that he was entrusting me with more responsibility and less reliance on him, and I had failed. Or maybe he just got ticked off (justifiably) and it came out in a fit of rage. Whatever the case, it was the “case closed” of the argument, and I wasn’t going to get bailed out this time.

 

(the open hand and extended arm)

chemstripThis was, I assume, later in my teens. Being rebellious (like all teens, especially teens with D, are) I had not tested my blood sugar and had just made up a number. My father challenged the number, which I assured him was accurate. But then he produced my meter (which I must have misplaced), so I explained (lied) that I read the Chemstrip off of the color chart on the side of the vial – and that the color was somewhere between 120 and 180, so I had guessed a believable number like 158. “Really,” I reiterated.

Then he showed me my Autolet lancer (you know the one), so I retaliated with the far-fetched excuse that I couldn’t find the lancer, so I used a lancet and pricked my finger manually. I did have the extra lancets and the vial of strips (that part is true).

That’s when he reached out to shake my hand.

I have no idea what the gesture meant. Was the handshakes meant as a promise – which, if returned, was a vow of truthfulness? Was he congratulating me on my ingenuity of improvising a blood test with limited supplies? To this day, I have no idea – but there’s something sacred about a handshake, and I’ve always felt (deserved) guilt over returning it, knowing it was based on a stack of lies.

Before I go further, let me clarify that I hold no ill-will towards my dad whatsoever. I have tremendous respect and gratitude for him. Rare were the times when he had to exercise “tough love”, which makes the times when he did that much more effective.

 

“So, what can I do for you?”

After I had gotten married and moved to a new state, I (obviously) needed to find a new endocrinologist. I picked a practice based on one of the lead doctors’ credentials, online reviews, and participation in my insurance plan, but when that doctor wasn’t accepting new patients, I went with another in the practice.

On my first visit, I walked into the exam room and the assistant (in six years, I never learned her name or title) checked my blood pressure, blood sugar, pulse, height, and weight, and then I went into the doctor’s real office (not an exam room, a real office). The doctor sat at his wooden desk and I sat across from him – like I was there for a job interview.

The “interview” opened with those words above. What can I say other than ‘Well, I have Type 1 diabetes and I’m supposed to see an endocrinologist every three months, and I just moved here and it’s been that long, so here I am!’.

And that’s exactly what I said.

 

“I’m not an endocrinologist. I’m an internist. I care about the whole body.”

A few doctors before the one above, I had also moved to a new area and had searched my insurance plan list to find a doctor who was in my area. In my search on the company’s website, I specifically included the term “diabetes”. And I found one with such a specialty.

I remember he had a very quiet office among a small cluster of buildings. There was dark wood paneling, dark carpeting, and everything else in dark colors – and the doctor spoke in soft tones. It was the perfect setting for a nap. At my first appointment, the doctor revealed to me what was stated above, trying to convince me that seeing him would actually be better than seeing an endocrinologist. To be honest, I don’t remember if it said “endocrinologist” on the website or if I had just assumed it based on his specialty in diabetes. But he wasn’t, and I felt deceived.

Everything seemed weird there. And his knowledge of diabetes didn’t quite seem up to snuff. So I got my prescriptions for insulin refills and never went back.

 

“Price: Two Hundred Dollars”

Monopoly-orangeWhen I was in the pediatric ward at St. Peter’s Hospital after diagnosis, I shared a room with a young boy whose foot had been run over by a lawnmower. We were passing time by playing Monopoly.

I was halfway around the board and landed on New York Avenue.

There’s nothing remarkable about the statement, but the matter-of-fact manner in which he read the cost of the property off of the board, including the word “Price”, just stuck in my head. I don’t have many memories of my diagnosis, but I remember this one.

 

“Do you know how to spell Candy?”

I also remember this one. Before I moved down to the pediatric ward, I was upstairs in a different part of the hospital because I also had chicken pox and needed to be kept away from other patients. This area of the hospital was generally was filled with adults, and the nurses were thrilled to have a cute (yet blotchy-faced) seven-year old on the scene for a couple of days.

After a few days when the chicken pox was no longer contagious, I was to be moved down to pediatrics. But first, my parents made me write a “thank you for taking care of me” card to the nurses. As one of the nurses helped me with the names of the others, she asked me this question.

“Of course I do,” I responded, laughing at the simplicity of the question “It’s C-A-N-D-Y.”

“That’s right”, she told me, “but she spells her name C-A-N-D-I.”

And that’s the story of me and my nurse named Candi. I remember nothing about her except the spelling of her name.

 

“Hey look! It’s @Scott_InTheD! Yay!”

This was my first day on Twitter, and the first time I had been tagged in a tweet.  It came from @Jess_MeandD, who had been helping me get started on a day of Twitter glitchiness.

That tweet meant a lot to me. It was an instant inclusion into an established group, and it took away the pressure of approaching the group of kids at recess and timidly asking “Hi, I’m Scott. Can I play, too?” And I’ve never forgotten it.

(Thanks to http://topsy.com/ for helping me find that old tweet!)

What are some things people have told you that have stuck?

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Posted on February 2, 2015, in Diabetes. Bookmark the permalink. 12 Comments.

  1. Nicely said and creative concept here. I can relate to having certain quotes stick out in my own journey with diabetes, too. It’s funny the things that we pick up along the way, but I suppose they’re there for some good reason!

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  2. This was absolutely fascinated and intriguing. I love the real-life’ness of it. It’s raw and honest and partly funny.
    I love the internal dialogue to the “it’s part of your life now” doctor. That’s like the people that stand 5km out from the end of a marathon and tell people “you’re almost there.” those people need to be bitch slapped.
    The only thing anybody ever said to me that really stuck was “You’re lucky to be alive, you should be dead.” That was the day a smart nurse finally got me started on insulin after being “diagnosed” and left without treatment for 2 months.

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    • I don’t know if he meant to be such a prick. His tone was calm. But I don’t think I’d ever before felt such rage as I did on that day. Not even when I was diagnosed.

      “You should be dead” — those must be hard words to hear.

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  3. Great list! I don’t have anything snappy for you right now, but if I think of something, I’ll let you know.

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  4. Interesting mixture of comments. It is kind of funny (poignant, sad, or just okay) that memories of diabetes provide a lot of context to our lives. I have always given thanks that I was not diagnosed until my early 20’s so I missed the opportunity to be a rebellious T1 teen. I would have been a horrible one:-)

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    • I’ve tried to find a common theme to them and couldn’t find it. Is there a recurring tone of sympathy? anger? resentment? motivation? It’s none of the above. You’re right, it’s such a varying context.

      The rebellious T1 “teen” years also carried through college, where all meals were buffets and access to beer was plentiful. Sometimes I honestly don’t know how I made it through — I think I have Regular and NPH to thank — everything happens so much more slowly with those old-school insulin types.

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  5. I have a few quotes of my own that stuck….. I went with my class to donate blood a while ago. One of my friends had a cold, and was told that he couldn’t donate blood. Another friend said “I don’t get it. He’s sick for a few days and can’t donate blood; but you’re sick forever and you can. What’s up with that?” …this was an honest question, and

    …..first of all, I had already explained to him that it was not contagious, so I don’t know what he didn’t understand. Second of all, the pure insensitivity and lack of thought of that question really made my blood boil.

    ….on a lighter note, about 13 years after diagnosis, I was in the endo’s office with my mother, and the nurse asked me if I wanted to prick my own finger for the A1C test….when I said yes, and she handed me a lancet, my mother asked me “Are you sure you know how to use that?” ….the nurse and I had a good laugh at that.

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    • I think it’s all in the tone, Michael. The question could come out of sheer lack of knowledge or it could be intentionally abrasive. (Not being there, obviously I don’t know). But I guess his statement all comes back to the categorization of diabetes as a “disease” — a label which is true but which I still despise. And by the way, I can’t donate blood because I’ve used animal-sourced insulin before, so in addition to the diabetes “disease”, apparently I might have Mad Cow Disease as well.

      Great story about the lancet!

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      • Yes, tone is pretty major. I was very confused about it, because it really read like an honest question, but one that *must* have come completely without thinking, because I know that he knows how diabetes works. My anger was more like “Hello-o-oh, you should think about other people’s feelings before you talk please, thank you!”

        Also, I’ve heard different things about animal-sourced insulin — some say everyone’s okay to donate, some say that bovine is a problem, but not porcine, some say that both are problematic (out of concern for Swine Flu). [where I donated, they said that bovine was a problem, but not porcine, so I could give even though I’ve used pig insulin]

        I honestly doubt you have Mad Cow Disease, though 😉

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  6. There have been a lot of things, obviously .. but the one that sticks out the most (and the one that I *might* hold the most bitterness toward …) was my admitting dr after my initial dx in ’92 looking me dead in the eye of my 17 yr old self and say “You know you’ll never be able to have children.” I felt like I’d been sucker punched. But I wish now I could show that jerk the pictures of my 3 healthy boys – and as you know, 2 of which came from one pregnancy!

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  1. Pingback: Sticks and Stones and Words | Very Light, No Sugar

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