Thursday, November 09, 2006


My parents divorced when I was 9 years old. At that point, I'd had diabetes nearly one full year. I've been asked if I thought the weight of having a child with a chronic condition spoiled my parents' marriage. Although I know that sometimes, having a child with a chronic illness can have a terrible impact on a marriage, my parents relationship was falling apart for years before I was diagnosed. If anything, my diagnosis helped - or forced - them to hang in there a little longer - to spare me further trauma. All of that dramatic back story to get to this - my father had an apartment that my brothers and I visited on weekends and during school breaks.

Dad's apartment wasn't anything special, really. Except that it was something new - figuratively and literally. It was in a brand new development that sat by a heavily wooded area on the outskirts of the city where I grew up. I remember how it smelled so new. I remember how the carpets hadn't been padded down from wear and tear and the walls were the cleanest ivory walls I'd ever seen. I remember his big kitchen and the little backyard with the grill and the fact that his apartment had TWO! bathrooms - two bathrooms was big thing for a girl who'd grown up with just one. My brothers and I shared an upstairs bedroom - with my brothers sleeping in the bed and me on the futon dad had acquired.

What I remember best about dad's apartment, though, is the phantoms. Seriously - I saw ghosts in that place. Two of them, at least. There was a very tall indian brave that would stand over me and stare down - looking right into my eyes. He was so real I could smell the raw, outdoorsy-ness of him. He'd come at least two nights a month when I stayed at dad's. And then there was the older indian woman who'd sit in the old rocking chair that was in the corner of the bedroom. She'd just sit there and rock back and forth, slow and deliberate. She'd come less frequently than the big scary brave. At first, I'd awaken screaming at the visions - waking the entire house. My brothers would shoot up in bed, terrified, and my father would come running from his room.

Typically the following argument would follow these startled awakenings...

"Nicole, you need to test your bloodsugar, you've had another nightmare."

"But I don't feel low and that indian (or those indians, or that old woman) was here again."

"Nicole there is no indian, please test your bloodsugar."


And I'd test. Most of the time my bloodsugar was just fine. But my father, convinced I must be falling fast, would give me a snack before he let me turn in again. And most of the time, I'd wake up three hours later with cotton mouth, having to pee like nobody's business, and with a bloodsugar in the 250s.

Sometimes, I'd argue further about testing - insisting I wasn't low and that the ghosts were real.

This went on for the entire five years my father lived in that apartment. Five years. The carpet got old, the walls got dirtier, the kitchen and the grill lost their luster, and the extra bathroom stopped seeming so glamorous. But - those ghosts NEVER went away.

After the first several times, I stopped screaming, stopped being all that afraid. I'd sit and look up at the brave or the old woman, then close my eyes tight and look again... Most of the time, when I looked again, they were gone. When they weren't, I'd just repeat the process - eventually, the phantoms would go away.

Years later, my Aunty Kaye - who is wise and wonderful, told me that my dad had told her about the things I was seeing in that house and wondered what he could give me before bed to stop these nightmares. My Aunty Kaye told him he'd have to give the spirits something, not me, if he wanted it to stop. My dad told her she was crazy. But, she told me, she wasn't crazy - and neither was I.

Those things, friends, were REAL. As real as real could be. And they wanted something - though I'm still not sure what... Maybe just to be seen, maybe something more. I guess I'll never know.

I wondered out loud to my Aunty Kaye why no one else had seen them - why they hadn't appeared to others. Aunty Kaye told me it was probably because of my diabetes. Spirits, she said, had a way of finding those of us whose bodies weren't necessarily "whole." She thought it might be because they could sense the strength - and vulnerability - of a person dealing with illness. Sense the willingness to trust the unknown - and deal with the unexpected. Honestly, I don't know - maybe I'm crazy - maybe my Aunty Kaye is nuts too - but that last bit made sense to me.

Because really, that's what diabetes is all about - trusting the unknown and dealing with the unexpected.

Trusting that if I do everything I can and make every possible effort, I'll be OK in the end. Trusting that good control will help me to avoid complications. Trusting a machine to give me a good estimate of bloodsugar, trusting another machine to keep me alive and functioning. Trusting myself enough to keep trying new things and adjusting techniques. At the same time, feeling so vulnerable - because I know that no matter how much I trust - it might not matter.

And - dealing with the unexpected. Dodging the 320 mg/dl bloodsugar - even when I've eaten just the right things, given just the right insulin, and been just the right amount of active. Treating the 20 mg/dl bloodsugar that stays at 20 mg/dl even after 30 ounces of juice. Tracking patterns that really aren't patterns at all - and trying to make just the right changes to get things back to "normal." Again - simultaneously feeling so vulnerable because what if I can't get it right one time? I could die...

Really, I'd imagine that a spirit would need to present itself to someone with some level of vulnerability - openness.

Plus - it makes sense that a spirit would want to present itself to someone who might be willing to accept that something they're seeing might be so - even if it CAN'T be so...

An example: I CAN'T be 320 - I gave the right amount of insulin. is pretty much equal to There CAN'T be a giant smelly indian standing there - ghosts don't exist.

And, it also makes sense that a spirit would want to present itself to someone who could deal with what they're seeing...

An example: Ah, my bloodsugar is 25 and even after ALL this juice, it's not coming up - but I'll just keep treating, keep testing. I'll be alright - and I know it. is pretty much equal to I'll just sit here and watch that giant smelly indian for a minute, then close my eyes tight, and he'll probably be gone.

I wish a ghost would visit me now - and that I'd be able to help them in some way. But I think if my Aunt's theories are correct, the spirits probably sense more of my strength now than my vulnerability. That strength that my disease has built in me - the strength I wouldn't have without it. I feel vulnerable now - but far less often - because I am living for today - for this minute and I know I am stronger than this disease will ever be.

I guess I don't mind being without phantoms - I much prefer feeling strong - and whole.


sandra_lm said...


This post gave me gooseflesh.

A fascinating, poignant story.

George said...

Nicole, we need to swap ghost stories one of these days!

Scott K. Johnson said...

Wowsers Nic! How strange it must have been to just come to some sort of acceptance of those figures! I think I would have crapped my shorts!

G-Money - we want to hear them too!

gina said...

wow... you are strong!

Kassie said...

an utterly unique take on diabetes. Excellent post Nic!

MileMasterSarah said...

Cool! I saw a ghost, also an indian, when I was 15 and 16.

Kerri. said...


This is an amazing post. Truly amazing.

"Stronger than this disease will ever be..."

Well said, my friend. Well said indeed.`

julia said...

This was an incredible post, Nicole.

Rachel said...

I wonder if that is something about dads.

My parents separated briefly when I was 9 years old. I swear, my dad seemed to check on me more those weekends I spent with him than he did "at home" during those months he lived away from us.

Maybe it is more about dads than about diabetes. Or maybe that's my wishful thinking for you...

justme said...

goosebumps, all over.

Vivian said...

Very cool, thanks for sharing this.

floreksa said...

Great post!! So many images and ideas to think about.

Shannon said...

I have the goosebumps right now.

We always need a special person like your Aunt who understands and believes in what you've experienced.

Through all of the experiences you've shared on your blog, you are indeed a strong woman and I'm lucky to know you :)

Johnboy said...

Nicole, I agree that "trusting the unknown and dealing with the unexpected" is precisely what this disease is about.

Our ability to keep learning and adjusting is vital to our success, just as is not freaking out too much by unexpected events or results.

Your experience provides such a powerful metaphor. Thank you for sharing it!

Chrissie in Belgium said...

I am all ears. Tell us more about you spook experiences! Just b/c we do not understand something it does not mean it is not true.