Is That a Pager?!

An insulin pump is a small, eye-brow-raising, “Is that a pager?!” question-generating, device. First and foremost, no, it’s not a pager. At first glance it looks like one – it’s black, it has a clip, and it’s usually tucked into the pocket of my pants. Once I tell them that it’s an insulin pump and pull out the clear tubing connecting my body to the pump, the person’s face turns from curiosity to confusion and sometimes, even embarrassment – like they’re sorry they even asked.

It’s ok if they ask, I don’t mind answering the questions. I tell them that the pump gives me insulin every hour through the tubing and if I’m comfortable enough, I’ll lift my shirt to show them where the tubing connects to my insertion site, a strange looking “plug” where the insulin goes into my belly and is absorbed by my body. What I really want to tell them is that this “pager” is not only helping me control my blood sugar, it is ultimately keeping me alive.

When the Dr. first recommended I use an insulin pump, I didn’t want to do it. The thought of having something attached me to 24/7 did not sound appealing, only annoying. I had just been diagnosed and I knew the pump would not only be a nuisance, but that it would be visible, only opening the invitation for others to ask questions I wasn’t prepared to answer.

For the first few months, I managed my diabetes with insulin injections, about 5-6 shots a day. While I had nothing physically attached to me, I still had to carry syringes, alcohol pads, and vials of insulin with me everywhere. It was as if I had an invisible string connecting my body to the supplies and emotions I had to carry with me. Other than the extra weight in my purse, the other major downside to insulin injections was the rigid schedule I had to maintain. I had to eat at the same time every day and know exactly how much food I was going to eat at each meal. The freedom of eating whatever and whenever I wanted was gone the minute I was diagnosed.

The only way of gaining some of that freedom back was with an insulin pump, as it would give me insulin automatically, just as a normal person’s pancreas would. Once I realized this and with the persistence of my Dr. and parents, we contacted the pump company and ordered my first pump. When it arrived, I still had mixed emotions – I wasn’t sure if I was ready for it yet. Was I prepared to answer those eye-brow raising questions? Was I ready to open up and talk about my diabetes? I was still so unsure about the pump, that the box sat on the kitchen counter for 4 months until I eventually knew it was the best thing for my health.

Three insulin pumps later, I have not gone back to managing my diabetes with injections.  The freedom that I yearned for was instantly found in that first pump. I was able to eat whenever I wanted and have better control of my blood sugar. Although it took a while, I’ve gotten used to the constant attachment. So much so, that if it wasn’t attached to me, my pocket would feel empty without it. As for the questions and looks, I am now fully prepared for whatever question they ask. I see it as an opportunity to educate someone on diabetes and a chance to share a piece of myself I’m not afraid of hiding anymore.

Let It Burn then Let It Go

“It’s time to release Chinese Lanterns”, my Aunt exclaims to my extended family. It is 9pm on the second night of our annual ski (or stay inside by the fire) trip at Wisp Resort in McHenry, MD. She pulls out ten or so colorful paper lanterns and tells us to choose one and grab a partner. We walk out onto the deck in our snow boots and feel the chill of mountain air on our cheeks. Small snowflakes are falling and the only light on the deck is the glow from the kitchen in the house.

My “lantern-releasing” partner is my husband, Dave. My Aunt tells us to unfold our lantern and force it open as you would a folded trash bag. With a swift wrist movement, our lantern is open and upright toward the sky- ready for flight. We light the fuel cell and let it burn into a large flame. She tells us to keep hold of it until we feel it pull up. She says it will release when it’s ready.

Someone once told me that when diagnosed with a chronic illness, the person can experience the 5 stages of grief as would a person mourning the loss of a loved one. At 16, I knew enough on the seriousness of my disease to know that my life would never be the same again. 

The 5 Stages of Grief are:

1.       Denial and Isolation

2.       Anger

3.       Bargaining

4.       Depression

5.       Acceptance

While not necessarily in that order, I’ve experienced all of these and then some.  I’ve gone through these stages over the course of a year, a month, even a day. By eating irresponsible amounts of candy, I’ve denied my disease and by holding it all in, I’ve isolated myself from friends and family. When I reached anger, I would throw fits of rage in my mind, imagining smashing every fragile plate, bowl, and cup in the cupboard. At times, I’d bargain and ask, “What could I have done differently to change my circumstance”? And the depression…well, that has several stages in and of itself. I’ve found myself falling in and crawling my way back out of stage 4 at so many moments it’s hard to keep track. Moments when my blood sugar’s been stubbornly high for days, moments when I’ve felt a tingle in my feet and the fear of amputation kicks in, moments when I just feel like I can’t do this for the rest of my life, let alone, another day.

The majority of my time since my diagnosis has been spent bouncing from stages 1-4, in whatever order my mind and my blood sugar would take me. Stage 5 has been harder to reach and to maintain. There have been times where I felt that I had finally reached acceptance, times when I felt like I could handle this, I could survive – times when I felt I could just let it all go.  Never knowing how long the feeling would last, I’d grasp the emotion and save it for a rainy day.

2011 was the first year since my diagnosis that more of my days were spent in Stage 5. 10 years of running from stage to stage, and I finally made it to a point where, if I started to feel myself taking a step backward, I could easily dig through the pain and uncover the peace I'd saved for these moments. How did I get here? How did I get to this place that at times, I never thought I'd get to? I trudged, cried, and cursed my way through denial, isolation, anger, bargaining, and depression. I had to let it burn in order to let it go.

Standing across from Dave, our hands holding on to the rim of the lantern, the flame is high and bright now, filling our lantern with hot air. I feel it begin to pull up towards the sky, it’s ready to take flight. I think of where I’ve been, look to the sky, make a wish and let go.

di·a·be·tes [dahy-uh-bee-tis, -teez]

I probably don’t need to tell you the definition of “di•a•be•tes”. If you know that it has something to do with sugar, insulin, and sometimes a weird looking pager with clear string attached to it, then you know what it’s about, for the most part. The point here is the pronunciation. It took me 10 years to say it comfortably, without hesitation or cringing. “di•a•be•tes” isn’t just a word or a disease, it’s an emotional rollercoaster, a weight on your shoulder, an ongoing game of hide and seek.

The word packs a punch with its first two letters, “di”. It sounds exactly like what I thought this disease would do to me when I was diagnosed. When I learned the complications of “di•a•be•tes” like blindness, nerve damage, and kidney failure, all I could think was that this disease is going to kill me. And in fact, it could. I could “di” from “di•a•be•tes”.

James A. Garfield once said, “The truth will set you free, but first it will make you miserable”. Realizing the weight and possible consequences of having “di•a•be•tes” didn’t set me free- it sent me running into unknown territory, looking for every tree or rock to hide behind. The fear set in so quickly, I didn’t even have time to count to 1 before I had hidden every emotion and fear I had about this disease.

Although it hasn’t been easy, somehow, I have gotten to an open, unhidden place with diabetes (there, I said it). This blog is my “unveiling”, my bumpy journey to acceptance, (or almost acceptance depending on the day or blood sugar level), and the hiding places I have found along the way.