October 26, 2006

Notes to self

1. Do not transport POC meter in bag next to frozen lunch entrée. POC meter refuses to operate at temperatures below [insert random number between room temperature and that of a frozen lunch entrée]. When you find yourself going low on the subway, you will be unable to test and will have to make a random guess as to how many glucose tablets are needed to retrieve yourself from the hypoglycemic brink. By the time POC meter regains room temperature, it will mock you with a number well over 200.

2. Stop eating donuts.

3. Remember to take insulin with carbohydrates. (Ahem? Hello? Diabetes, anyone?) You do this by pushing the buttons on that purple thing. You know, the life-saving medical device attached to your body? Yeah, that one.

October 21, 2006

Two

When you truly possess all you have been and done, which may take some time, you are fierce with reality.

--Florida Scott-Maxwell


How I love that phrase: fierce with reality. Fierce! Check that out. Yeah, I’d like to get me some of that.

Okay, what do I do again? Truly possess all I’ve been and done?

Well.

That sounds uncomfortable, to say the least. Just for starters, I’d have to acknowledge that I ate a not insubstantial donut yesterday. (75 g of carbs. 75!) And it’s a pretty slippery slope from there, believe me.

Still...fierce. Hmm.

Hmm.

Donut jests aside, this fierceness project has preoccupied me ever since my ex and I split up. What I've wanted is to reach a new understanding of myself, a more profound and nuanced sense than I currently have of how I came to be at this funny little crossroads in my funny little life.

I didn’t have sufficiently apt words for this quest until last weekend, when I started rereading William Bridges’s The Way of Transition and found the above quote used as an epigraph. Aha, I thought. Here’s the thing I’m trying to do. And how gentle a caveat: “may take some time.” Yes. It does.

In a perhaps unsurprising way, given whose brain we're considering here, I find it’s easier to possess the things of which I’m ashamed than those of which I’m proud. Gargantuan Mistake #16, Shameful Error #42, Self-Absorbed Foolishness #23--these and others stand out in sharp relief against the occasional Violetine accomplishment or act of kindness. The myriad ways in which I’ve hurt myself and others simply WILL make themselves known at every opportunity. What cacophonous voices those little buggers have. They yell a lot.

Which brings me to today.

Two years ago today, I was diagnosed with diabetes. (The story of that week is archived in three parts: here, here, and here.) Looking back over these two little years that feel like ten--two years during which, not so incidentally, I made a new life and then participated in its crash-and-burn free fall--I realize that possessing all I’ve been and done in relation to this one small area of diabetes entails much more pride than shame.

There, I said it.

Pride because: I read and learned; I changed my diet not to the point of perfection (witness the aforementioned donut) but at least to a point where I could thrive physically and mentally; I found a way to connect with others that not only feels true to my natural introversion but even nurtures it; I started on the pump despite its numerous accompanying anxieties; I was afraid; I was brave; I persevered.

These aren't small things to have done and been. They're rather significant. A lot of them are choices I could have made differently.

Diabetes being only one small part of my life, I have many other things to ponder, understand, possess. But today I'm willing to celebrate a few small victories and to feel a bit fiercer thereby.

October 17, 2006

In which I overthink a new topic

Pursuant to #11 below, I’ve been looking into volunteer possibilities.

Well, there’s no place to start like the glaringly obvious: diabetes. The OC is full of people who are doing their part. Am I?

If by “doing my part” you mean whining periodically or perhaps chronicling my awkwardness, then yes--yes, I am. Otherwise, well...not as such.

It’s clearly the right thing to do, to contribute time and energy toward the causes of helping people cope, helping to raise money for the search for the Shmure, and so forth. Couldn’t begin to argue against it. But there’s a wall of (self-centered, irritated, irritating) resistance within me.

I think it’s an internal tension similar to the one described here. There’s a continual negotiation between Diabetic Violet and the Rest of Violet over how many of my waking hours I’m willing to sign over to this disease.

Diabetic Violet (hmm, perhaps she should be Violet with Diabetes out of respect for folks who hate “diabetic”?) knows that making a positive contribution to D-related causes would be a healthy—dare I say mature?—adaptation to my circumstances.

The Rest of Violet does not want to be quite that diabetic (have quite that much diabetes???), thank you very much. She’s shooting for the middle ground.

VWD points out that I’m always whining about isolation, about not knowing enough nonvirtual people who are tackling the same issues I am. D-related volunteer work is an obvious way to change that.

ROV does not want diabetes to become the mainstay of my interactions with other humans. Period.

VWD thinks ROV is in denial.

ROV thinks VWD is a priss.

OCers, where are you on this subject? (Um, not the question of whether VWD is a priss. The volunteering thing.)

Happily for both Violets, one can have a positive impact on the world in quite a few ways, huzzah! So for now I am shelving the question. I’m attracted to working with animals or maybe, if I can pull together the emotional fortitude, something like this program, which provides companionship to people at the end of life.

ROV figures diabetes will be around a while longer, after all. She will still be needed when she's ready.

October 7, 2006

Commitment to reality

I’ve been pretending to myself, these days, that I’m not paying attention to research. I pretend I’ve accepted and adapted. Cure, shmure. I’ll be delighted if it happens, but I’m not holding my breath. I am fine; I am strong. I cope, I manage, I deal. I am Getting On With My Life; I possess a Healthy Detachment.

Hmm.

It’s come to my attention that what I actually do, these days, is to glance sidelong at the research news, pretending not to look but in fact making quiet note of every development. (It’s an interesting talent, reading websites without consciously acknowledging that I do so.)

I’ve had to confront my tendency toward surreptitious monitoring after last week’s news that the Edmonton protocol is essentially a flop.

In a nutshell for the non-D-obsessed, this experimental procedure entails a noninvasive transplant of islets, those little jobbers in the pancreas that make insulin in a healthy person. In type 1, the immune system mistakenly eradicates the insulin-producing cells, leaving their former owner with diabetes.

So: insert happy, functional islets from organ donors, salt liberally with immunosuppressant drugs, cross fingers.

Variations on this procedure have been attempted for years with limited efficacy, but the most recent study had encouraging results at 1 year following transplantation. About half of patients were manufacturing all the insulin they needed, and a large percentage of the other half were manufacturing some and achieving improved blood glucose control thereby.

Last week brought the news that at the 2-year mark, only 16% of patients were still functioning without insulin injections. It seems that the immune system continues to recognize the islets as invader cells and systematically destroys them. Unless/until more effective immunosuppressant drugs can be found, the Edmonton protocol is not a viable cure.

Certainly I had no conscious fantasy of ever receiving a transplant and a cure via this process. I’m more realistic than that.

But...crap.

I’ve written elsewhere about my mind’s habit of making contracts with the universe. What I realized this week is that I’ve done it in this area as well: If I do my job as a patient and forge ahead with gentle optimism and courage and blah blah blah, if I extend myself toward other PWDs and do my bit to help us all cope, I (and the rest of you) will be rewarded someday, someday, with the cure.

Truth be told, there is no such contract. There are no guarantees. Optimism may be mentally healthier than pessimism(?), but none of us can know if or when a cure may be found. There’s a tightrope to walk here—I suppose it’s properly called realism—that lacks the comforting safety net of my previous subconscious understanding with the universe.

So it’s time to renegotiate. What it must be, all it can be, is something like: If I do my best to take vigilant care of my diabetes, if I do my best to connect with others in my situation, I will be as physically and mentally healthy as I can be for as long as possible. In the meantime, a cure may or may not be found.

Bah. I liked the old contract a lot better.

October 1, 2006

Sixlandia

I recognized her from the back: a logically impossible feat because, as Kerri observed moments later, there are no butt shots posted over at Six Until Me.

Maybe it was the hair. Maybe it was the “oh crap, I’m looking for someone I’ve never met in Grand Central Station at rush hour” posture. Somehow I just knew: here she was, the gifted writer and sensitive, hysterically funny soul whose blog has enriched my life for what must surely be hundreds of posts by now.

I hurried over and said her name. She turned. “Violet?” My name isn’t really Violet, as K knows, but who I could really be other than Violet, to her? (For me it was a moment of secret wish fulfillment, as my nom de keyboard is what I would have named myself, had the choice been mine.)

Being of a quiet disposition, I had wondered if this meeting would feel awkward. No such thing. We hugged and babbled and laughed as we forged our way through the crowd to an exit. Wandered down Lexington, found a diner. I was on Day Five of my attempt at vegetarianism, so I ordered a portobello mushroom and cheese sandwich. For the balance of the evening, I glanced enviously at the bits of turkey on K’s chef salad. (I made it, for the record, to Day Seven, then capitulated to carnivorous longings. Last night I actually dreamed of steak. Medium rare.)

We talked and talked, nonstop. I described the Winter, Spring, and Summer of My Discontent and their numerous reverberations. We discussed the challenges of moving to a new place. We pondered the exhilarating weirdness of New York. We talked about blogging, what it means to each of us.

And of course we talked about diabetes. K had received bad news. I admired her attitude: frank, honest, unsettled but absolutely unwilling to be defeated.

The legendarily cool and compassionate Chris joined us for the last half hour. He’s real, girlfriends! My gosh. It’s not often in my current life situation that I’m around people whose love for one another simply shows in all their words and gestures. K and Chris are two such people. Meeting them both was a gift, a warm and heartening interlude during a time that’s been, often, less than reassuring about the questions that plague me around true love (is it even possible, does it last, how will I ever find it for myself, etc etc, ad nauseam).

Isolation is one of the hardest aspects of this disease for me. Here’s to its eradication.