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5 Years – “See What You Can Do With It”

May 14, 2015

5 years ago, this morning, I received a phone call from my doctor that completely changed my life. In the weeks that followed, the foundations of my values and decisions were challenged. Some things fell apart, and, over time, got put back together with greater integrity.

Through it all, I had the sense that our bodies were built for this… for change, decay, suffering, but also joy.

Diagnosis anniversaries are strange – neither happy nor sad, but significant. For this 5th-year anniversary, I am releasing a short EP of my own original music, called “The Earth Was Built For It.” The journey of processing my diagnosis and new life with Type 1 has been one of extremes: gratitude, grief, spiritual turmoil, peace, even joy. Today’s EP features four original songs that, to me, express these extremes.

A huge part of making sense of my new life with Type 1 has come from my work in oncology and palliative care. Learning to walk alongside people in their suffering has deepened my sense of gratitude and cultivated resilience and perspective. It has also helped me more fully comprehend the loss I experienced 5 years ago when my body suddenly betrayed me, has helped me to forgive and trust my body again, and taught me to never take anything for granted.

That’s why I’m attaching this EP release with a cause that is close to my heart, the fundraising for a new hospice here in Kitchener-Waterloo. Until May 24rd, all proceeds from Bandcamp purchases of the EP will go towards funding the construction of Innisfree Hospice, which is being built to meet a sore need in Waterloo Region for supporting people dying of cancer and their families.

Anniversaries like today aren’t really happy or sad, but they are significant. It’s hard to know what to do with them. So on that note, I’ll leave you with this song off the EP, called “Topography.” Because all these strange life-things, these losses and changes and mortal decay…our bodies were built for it, and the Earth was built for it. See what you can do with it.

Topography

It’s become a part of the landscape
It’s become a topography
It’s become a part of the way
That I think about the land and sea

It’s become a pile of emotion
Mile high of human debris
It’s become a part of the way
That I think of you thinking of me

And don’t run away from it
And don’t shy away from it
Emotion it is a gift
Our bodies were built for it

But you broke off a piece and floated downstream
Broke off a piece and floated away
Broke off a piece and floated downstream
A piece of the iceberg lost in the sea

And so we chip away at the stories
Leave ‘em out to soak up the rain
Let ‘em dry in the sun to become
Solidified again

And they become a part of the landscape
They become a topography
They become the mountains we climb
That erode then slowly into sea

And don’t run away from it
Erosion it is a gift
The earth it was built for it
These scars that pass over it

But you broke off a piece and floated downstream
Broke off a piece and floated away
Broke off a piece and floated downstream
And now there is an empty hole…

And don’t run away from me
And don’t shy away from me
You are my topography
The earth it is you and me

But where do the pieces go when they flow downstream
And do dreams help make them whole
And how can I retrieve all the pieces that broke
Cuz now there is an empty hole in the water
And now there is an empty hole in the mountain
And now there is an empty hole in my soul
But I don’t really notice it anymore…

…see what you can do with it…

Getting Teary About Fashion

March 13, 2015

A friend of mine just had a colostomy. As she recovers from surgery, she is also learning how to change her sack, tend to her stoma, and generally navigate life with this drastically new physical apparatus and responsibilities associated with it. The surgery was meant to be temporary – 6 months to a year – but has the potential to be permanent.

Yesterday I visited her in hospital. She said she’s bracing herself for all the learning to come. Not just learning to change the sack, but how to change what she wears. “I keep thinking about the summer, how I’m going to have to dress differently now.”

I showed her my pump infusion site, another recent site that had bled out and left major bruising, and the pump itself and the lump it leaves in my waistline. I said that, while our apparatuses are different in function, size and side-effect, I can empathize to some extent the impact of having a life-sustaining piece of baggage on your person at all times.

I shared how much, even in minor ways, it affects how I think about clothes and fashion too. I shared how I don’t really want to go on a spa-date with some girlfriends later this month, because the mental stress of attaching-detaching-re-attaching my pump every time we get in and out of the therapeutic pools, and leaving my 7-thousand-dollar piece of equipment precariously on the side of the pool, is just not attractive to me. How it’s the little things of living with built-in apparatuses that can wear you down.

But the tears only came when I began empathizing with her about fashion. “I think about my pump all the time when I pick outfits,” I said, and then felt the tears well up. I felt bad, starting to cry. I’m so used to being a bedside therapist in acute care, that crying with a patient feels like bad practice. I’m used to holding others stories without falling apart myself. But then I reminded myself that this is my friend, not my patient (although my own unit was just down the hall), and let myself be me.

When tears sneak up on us like that, it’s usually a sign that we’ve hit on something really important to us that we didn’t even know mattered.

Truth is, I think about the pump all the time when it comes to fashion. I have beautiful new patterned stockings that my mom gave me in January that I haven’t even opened, because I hate clipping my pump to stockings (they run and pull the stockings down), and the sports bras that used to be able to hold the pump without a clip have recently lost their elasticity, making the pump look like a third boob when I tuck it in there. I exclusively wear either pants with pockets, or lululemon leggings in lieu of pretty tights, because lululemon builds in “stash pockets” into all their yoga pants – inlined pockets that are meant for stashing keys or credit cards into the waistline, but are blessedly just big enough to tuck in a medtronic pump.

Summer is a different story, when I don’t want to wear leggings, when the desire to wear slinky breezy clothing is juxtaposed by the lack of places in such outfits to stash a frikkin’ pump. It’s not surprising that the only times I’ve ever taken extended pump “holidays” is in the summer.

I am grateful, and lucky, that pump holidays are an option. But switching from pumping to injections is also stressful. There’s a lot of re-learning, re-adjusting, and gear-changing that sometimes doesn’t feel worth it.

There’s an invisible mental stress of wearing this pump, and living with diabetes in general, that I often forget. Getting teary about summer fashion was a strong indicator. Avoiding plans to go to a spa was another strong indicator. The indication is: diabetes is a nasty, pervasive, activity-limiting, frustrating piece of shit. 

I’m tempted to go home and rip open these awesome patterned stockings, and stuff the pump in my stretchy sportsbra, third-boob be damned. I’m tempted to go to the spa and pay a ton of cash to worry about detaching/reattaching my pump all the time. I’m tempted to go home and take a big phat shot of lantus and be done with it.

But I think I’ll settle with accepting that, no matter how much ass I kick with diabetes, and now matter how awesome my life feels most of the time, I still have a disease, and it fucking sucks.

I think I’ll settle with that.

Spring Rains and Hockey Games: Enter Year Four.

May 14, 2014

Four years ago. The Habs had just beat the Bruins in the second round. There’d been lots of spring rain, everything green. I was moving slowly, out of it, exhausted and desperately thirsty. Was rehearsing for a Dixit Dominus performance which eventually I couldn’t sing. I got in the cab to the ER after an urgent call from my doctor’s office, bloodwork just in. This happened.

At first they told me Type 2.

I’m not sure what to do with diaversaries. They are neither “good” anniversaries or “bad.” They are significant, though how significant depends on my current relationship not just with the disease I live with, but with the event of diagnosis itself. Shock, trauma, grace, mindful, anger, unfair, numb, surreal, gratitude, destiny, compassion… these are all words I’ve used to describe my diagnosis and the emotional processing around it. My processing of it differs every day. But I do think of it every day. So that gives some weight to a diaversary, I guess.

This is my 4th, so diaversaries have almost become commonplace. It’s not the epic fundraising bash I threw on my first one, or even the slow-drip of melancholy of the other ones. I usher it with the visceral understanding of its significance, an experience which is far more in my senses than my head.

Last week a lot of feelings were coming up. The sense of loss, the grief about my diagnosis which only really began to surface in the past two years (formerly occupied by sense of *numb*). The spring rains. The playoffs. My own joyful exuberance and ecstatic love of the world these days, so reminiscent of my spring-fever of four years ago, which appeared to crash into a poll upon diagnosis. Tears would come up last week when I thought of the lilacs blooming soon. I remember that the only good cry I had after being discharged from the hospital four years ago, was telling my boyfriend-at-the-time that all I wanted was to go outside and smell the lilacs and begin to feel again.

My diabetes itself, like the anniversary of its diagnosis, is also in a sense commonplace, but also not. While diabetes is a part of me now, I still retain that sense of sweet innocence before a disease found its way into my identity. I mourn also how much diabetes dominated my identity for the first two years, understandably. And I quietly acknowledge that, while it’s somewhat become second-nature, it has not become easy. If anything, it’s gotten tougher, my resilience wearing thin from four years of constant work.

Today marks that turning. I will take deep inhales of spring rains and blooming hyacinth to honour that identity now gone, and mark the passing of time, and the richness that comes from any lived experience, for its own sake. Because while diaversaries may be neither happy nor sad, they are significant.

Three days ago, in the midst of a blissful warm late-night bike-ride home, I hit a bump, crashed, and fractured my left wrist. I won’t speak of the parallels (because I’m still letting them speak to me viscerally) of being in the ER, and slowing down a bit, and learning to do new tasks, and the way my general emotional *volume* dials way down when there are real-life physical challenges facing me. I do find, while navigating a new (albeit temporary) “normal” in my body, that my senses grow heightened, the world feels newly discoverable, and every task feels more present and mindful. Tonight, the Habs face off the Bruins in Game 7. Yesterday’s spring storm has turned everything green. Lilacs will no doubt be out soon.

Venting.

March 14, 2014

I used to think that one day I’d have diabetes figured out. I’d slide into diabetic “adulthood.” My diabetes would be predictable, under control. These things would probably coincide with my first mortgage. I’d “settle down.”

I’m slowly figuring out that diabetes is a life-long shit-show.

Kerri’s recent video on Six Until Me touches on this – how the “minutia” of daily life with diabetes requires flexibility, and how this disease and the ways we manage it can keep changing on us. It hit home, because lately, I’ve been struggling with these changes.

The past two months I’ve been needing way more insulin. Like, way more than ever before. Is it my honeymoon ending? (didn’t that already happen?) Is it because I’m simply eating too much? (Read: winter. bread. butter. yum.) And what about all the running I’m doing? (training for a 30K! Working out like a ton!) Doesn’t that “normally” keep my numbers way down, and reduce my daily insulin intake by a lot?

I’m in a season where there’s no sense of “normal” in my d-management.

And my knee-jerk response: shame.

Those unpredictable numbers trigger in me feelings of being “bad” at diabetes. They smash my morale. Rather than think rationally about how I can tweak my basals, or say, book an appt with my team to talk about it, or attend a support group or something to address burnout, I just feel angry with myself. I yell at my pump. I start using a whole separate meter on “high” days just so I won’t be tempted to hate myself when my daily totals go way up on my primary meter.

Talking about the shame is a healthy step.

Today, out on a run – a glorious 12K in one of the first spring-like days of 2014 we’ve enjoyed here in Ontario – my BGs began to plummet. Totally uncharacteristic of my recent trends, I had to nurse myself with my whole stash of dry dates for the last five clicks (I still kicked ass btw – the run was awesome and I KEPT GOING despite stupid numbers). And as I ran through the melting snow, feeling that dizzy feeling of the sugar starting to rise my thirsting blood, I wanted to shout this out:

diabetes is a violent disease.

Sure, it’s full of fun support groups and inspiring people and opportunities for overcoming challenges and learning about life. But this chronic, ongoing, never-ending process of dealing with physically exhausting changes – that is violent.

I’m not gonna sugarcoat it. I really hate this shit right now. And I think that voicing it on this here blog helps.

This is a violent disease.

I still got my run though. And for that, I’m just thrilled to bits.

Hi, My Name is Sarah, and I’m Carb-a-Phobic.

November 20, 2013

Decision-making is a cause of anxiety. This is something a dear friend said to me once, long before I had diabetes. We were talking about one of the countless times I was catatonic in the face of making a life-decision (take this job or that job? Break up with him or keep giving it one more shot? etc.).

I haven’t forgotten that. Decision-making is stressful. And in this culture, we get a lot of it. I get to choose my career, my marital status, my dinner. This digital age also affords us freedom to make thousands of decisions at the touch of an iphone.   I wonder if part of why we are an anxiety-ridden culture has something to do with being offered so much damn choice all the time.

Diabetics make about a thousand choices a day. The endless series of teeny-weenie decisions we make every hour is part of the silent mental toll of the disease.

So it’s with this in mind that I make the following confession.

I’m afraid of carbs.

Eating carbs means making decisions. It means estimating portion sizes, calculating ratios. It means trying to predict what my upcoming few hours will look like.  If it’s 3pm and I snack on an apple, I can bolus for it and end up crashing if I bike home in two hours. I can also mis-calculate and end up super high.  Plus, there’s all that literature I’ve read about how higher daily totals of insulin lead to weight gain, and so I want to keep my daily totals as low as possible cuz dammit I don’t want to be fat.

It’s psychologically easier to just eat a spoonful of almond butter.

But here’s the thing. Eating carbs is part of life, and there’s no reason why eating an apple on a typical afternoon should be a big deal. Insulin dosing, while an imperfect art, is still most-of-the-time predictable, and I should not be depriving myself of healthy foods because they also happen to metabolize as sugar in my blood. I should just get more used to carb-counting and trusting the Bolus Wizard to do what I’ve programmed it to do. And that if it happens to be a freaky day and my numbers are not optimal after my carb intake, I should get used to not-blaming myself, not-overreacting, and just treating the high or low sensibly and objectively.

That’s what I should do.

Instead, I’ve developed a carb-phobia. I think it began in moderation very soon after my diagnosis but has gotten a bit more severe in the past year. One sign of this is I’ve developed strong physical and psychological cravings for highly fatty foods. Almond butter, tahini, cheese, straight coconut or olive oils… I eat a lot of this stuff. Probably more than I should.

I’ve become a pseudo-Atkins person. I fear carbs, taking over-compensating comfort in high-calorie fats. This isn’t necessarily a bad thing – these foods all have health properties of their own in moderation, and it’s good to fill up on healthy fats that will keep you full for longer than refined carbs.  But when I’m standing in my kitchen, still hungry after a carbless dinner, spooning 3, 4, 6 spoonfuls of sesame butter into my mouth without satiety, I wonder…maybe I should just have had a bowl of rice with my meal.

Last week I noticed that I went through 2 and a half jars of almond butter and tahini. In seven days. That’s a lot. Also, I’ve gained weight in the past year, which I don’t TOTALLY mind (I’m 30 now! And curvy! And womanly! And not afraid to take up space! And active and generally healthy!), but I wonder how much extra caloric intake my fat-addiction and carb-phobia is causing. Objectively speaking, losing 5-10 lbs would do me no harm. And I have to remember: insulin isn’t the enemy. Carbs are not the enemy. It’s okay to eat some quinoa and take a hit of slin.

(For the record, DIABETES is the enemy, but I like to keep my enemies close.)

So I’m trying to eat more carbs, and for a little while at least, am cutting out nut butters entirely (too tempting to keep around while I transition from this addiction). While I’ll see an increase in daily totals of insulin, I want to trust that this alone won’t plunge me into obesity. I can also get more into the habit of actually measuring my portion sizes – cups of rice, sizes of potatoes, slices of bread. My carb-counting isn’t what it could be, and a big reason is that I have simply not included a lot of carbs in my daily lifestyle.

Today for lunch, I made a big bowl of brown rice and ate it with chick peas and sauteed kale, nutritional yeast sprinkled on top. A good 50 grams of carbs, for which I gave a big fat bolus. Deep breath. It’s okay. The nice part? I didn’t hover around my fridge, contemplating what other carb-free, high-calorie food I could shovel into my mouth to keep me full for the afternoon. No compulsive re-slicing of cheese, no “just-one-more” dips into the almond butter jar.

 

Yes, I had to make decisions. I had to estimate and calculate, and in so-doing have made myself vulnerable to margins-of-error. My post-meal BG was higher than I’m comfortable with. Next time, I can measure the portions a bit more accurately and learn from the high.

All I know is: I was afraid of something that I didn’t need to be. So I did what I like to do with all my unhelpful fears: grabbed it by the balls. And then offered it  a side of brown rice.

Ambivalent Poetry on WDD

November 14, 2013

I really wasn’t feeling World Diabetes Day today (I’m not even wearing blue. I figure that’s for others who support me to do. But I didn’t really tell anyone it’s WDD, so…). It’s my fourth one as a type 1 and every year has lost a wee bit of grandeur. This day isn’t any different than other days for anyone with diabetes. Our pancreases don’t behave any differently, and we don’t get a day off work.

I wasn’t gonna write anything, til I peaked at Kerri’s blog, and got inspired to write an impromptu poem to mark this day. Cuz when I’m sick of talking about something, I might as well try making it rhyme.

—-

World Diabetes Day – 2013

Diabetes came my way
3 .5 years ago, to the day
And ain’t it true, that famous sayin’
That nothing since has been the same.

The first thought I had when diagnosed
Was, “holy crap, I really hope
That this is the kind I can treat with pills
Cuz I CAN’T take shots…nope, I NEVER will.”

Well ain’t it funny, the things we do
when we really, simply, kinda have to.
And taking shots, as it turns out,
Is actually the easy part.

I’d try to spell it out again
how much crap goes into stayin’
alive, and well, and on my feet
and out of debt, with diabeets,

But frankly, I’m so sick of saying
all that stuff, all this complaining,
and equally quite sick am I
of always seeing the positive side.

So go ahead and read this blog
If you wanna hear it all –
the highs the lows, the lessons learned –
It’s all been felt, and even heard.

Meanwhile I’ll try to go about my day
Without diabetes in the way,
and hope that we instead can be
like partners cohabiting easily.

Not to pretend that this disease
is not completely 100% shitty,
But I try to take it by the hand,
cuz it’s a part of who I am.

What Could Have Been

October 29, 2013

I just caught myself.

I’m writing up a proposal this afternoon for a music therapy study at an Ontario-based complex care hospital. Drawing on lingo from the hospital’s website and mission statement, I’ve been weaving words around “improving the lives of people living with chronic conditions,” and such, with a clear visual in mind. I know this health centre. The “chronic conditions” they deal with are typically people with congenital disabilities, who have spent their entire lives institutionalized – most of them are unable to perform basic activities of daily life, be physically independent, or speak. Typing away, I punched things out about these persons with chronic health conditions, about how this health centre’s innovative practice is “transforming how people with chronic conditions live full lives.”

Then I caught myself. I am also a person with a chronic condition.  But not those kinds of people with chronic conditions – no trach tubes or toiletting assistance needed for me. So how, I asked myself, does this statement relate to me?

The answer: it DOES RELATE TO ME, big time. I am supported in some major ways, by health care providers, in living a “full life” with a chronic condition. Major ways meaning: insulin exists. Test strip technology is pretty rad too, though criminally expensive, and insulin pumps and pens? Pretty snazzy-jazzy tools!

So while I am thankfully not a residential patient at a complex care hospital, I am a breath away from being in a similar life-limiting state. If insulin hadn’t been discovered…if Banting hadn’t been born…if I had been misdiagnosed, if, if if. Thinking about this, I got that little goosebumpy experience from musing on … what could have been, if Western medicine wasn’t what it was.

That thought…it’s like a shadow I walk with, rarely conscious of it, though chilled and humbled when I am. Sort of like those what-ifs when someone narrowly avoids a car accident, or was late for to catch the doomed flight.

So in between writing up this report for the health centre, I paused and wrote this little poem. That shadow, that life that could have been…I think it’s not a bad thing to think about, as we head into this spooky and shadowy time of year, and into Diabetes Month itself.

I brush along its shadow every day,

the light stroke of a feather on my arm, in the afternoon shade –

Today, I strode boldly through my own thicket of toils and joys and needs,

and along it rode with me, that soft shadow,

brushing at my heels – all that could have been.

When We Get the Big News: diagnosis delivery

October 7, 2013

Learning of a major diagnosis is a pivotal moment in a person’s life. On TV shows (and often in real life), cancer is diagnosed in a private physician office full of natural light, tastefully minimalist art, and plants. In a similar vein, most ICU, trauma, and Emerg units have private “meeting rooms,” where families and patients can be delivered sensitive news discretely.

By contrast, I was diagnosed with diabetes in a 30-second phone call. And then again by a triage nurse. And then by an ER physician (who assured me I had type 2).

It looked something like this (told in the 3rd person for dramatic effect):

April-May 2010: Sarah walks around for four weeks with blurry vision, acute thirst, extreme dizziness, disastrous fatigue and noticeable weight loss despite a frantic diet of ice cream, rice crispy treats, and fresh-squeezed carrot/orange juice.

May 13, 2010: Sarah finally goes to see her family doctor, after several weeks of telling herself it was all just a “somatic response to being happy.” Finally prepared to hear the worst – “it looks like you might have MS or a brain tumour” – Sarah’s family doctor utters the most-unsexy of disease names: diabetes. (WTF? Says Sarah to herself, in between gasping for breath and reaching for a water bottle to quench the unending thirst.) Doctor draws blood (no over-the-counter test strips available at this clinic), sends it off by express-courier for a BG test (200 dollars for the courier…a foreshadow of expenses to come). Sarah stumbles home, calls her boyfriend to tell him she might be diabetic.

May 14, 2010, 7:30am: Sarah wakes up to a phone call from the doctor’s office. “You have diabetes,” the receptionist urgently tells her. “Don’t do anything, just head straight to the ER. Tell them your blood sugar is 28.5.” Sarah does as she’s told. Calls a cab, and then her mum, asking if she can come along. While in the cab, she also calls work: “apparently I have diabetes, and I have to go to the ER. I’m not sure how long I’ll be there, but maybe don’t expect me at work for a little while. I’ll call you when they let me out.”

8am: Intake nurse finger-sticks Sarah’s finger for the first time (the Virgin Poke). BG is 16.4. “You have diabetes,” she informs Sarah. Okay.

8:30am: Sarah is now in an ER bed and hooked up to an IV drip. Friendly ER doc stops by: “you have diabetes.” Okay. “But luckily it looks like the kind you can treat with pills.” Sarah is momentarily relieved, because yesterday her thought process was: “it’s okay if I have diabetes, just so long as it’s not the kind where I have to give shots. Cuz I just can’t do that.”

10am: Sarah gets her first insulin shot. The nurse says, “don’t worry about having diabetes. You’ll get used to it.”

6pm: Sarah asks the new nurse on-shift whether she has type 1 or type 2. Nurse says, “hmm, probably type 1.” This becomes the new question Sarah asks every practitioner who treats her. The votes for type 1 start to chalk up. Type 2 is losing the race.

May 15, 2010 Midnight: Sarah wakes up in the night by another ER nurse, coming to draw blood for the thousandth time. Sarah tries falling back asleep. Fails. Starts instinctively to sing quietly to herself, upon which she feels the tears well up. “Can’t cry here,” an intuitive voice warns her, “it’s not safe.” Sarah finally falls asleep, quietly acknowledging the emotional magnitude of the past 36 hrs, and the sheer lack of any resources to help her process it here in the ER.

I wish I had a more elegant moment of diagnosis. I wish it wasn’t such a frantic whirlwind. I wish someone, sometime had stopped and asked me how I felt. I wish I’d been taken aside somewhere, explained what was happening to me and what the longer term implications would be. I wish the ER social worker had stopped by my bed to pay me a visit. I wish that hospital staff had agreed on a unified, consistent message to send me about my health.

That didn’t happen. I stayed numb for awhile. In the days following, the boyfriend found ways to coax some tears out of me, and I cried once to my mom the day I moved back into my apartment. Other than that, it was jab jab jab, test test test, learn learn learn, cope cope cope.

The real tears came later.

I have found ways to reclaim the dignity missing from that week. It hasn’t been easy, and the process has been messy. Maybe that’s the way it needs to be. At least I understand now how profoundly my life was changed by those series of half-informed conversations. If only ER health care providers had the time, training, and mandate, to truly understand that impact too.

Diabetic Love

October 4, 2013

Today someone at work told me, after I told her I was diabetic, that I should “marry someone else with diabetes, so we understand each other, and then adopt babies.”

That’s not what this post is going to be about, but I thought that was a good way to start.

I’ve been thinking about the invisible toll of diabetes, the psychological stress that I’m so used to I can’t even notice.  Being caught in a never-ending cycle of accomplishment-guilt-frustration-pride-more guilt-decision making-complex math-failure-hypoglycemic haze-ketonic haze (and did I mention guilt?) is like breaking up with your partner and getting back together every hour of the day. Or at the very least, it’s like being wired into the internet 24/7 without that sudden breath of fresh air when you get away to the cottage, out of cell range and off-line…just for a weekend, but still…

I also have been thinking about how tired I am of being the freak in the room with diabetes. I want my friends, colleagues, and family to understand.

Then I had an idea.

I wondered what would happen if I sent an email out to a bunch of people in my life, proposing this: everyone goes out and spends 50 bucks on a box of Freestyle test strips and a meter (the meter comes free with strips). Then, for five measly days, everyone commits to testing their BG ten times a day.

No hassle with having to give mock-shots or make pseudo insulin-to-carb calculations. Just test the damn blood ten times a day. See what it’s like.

Would people do it? I thought to myself. Would people actually get over the fear of blood-letting, would people be willing to part with fifty bux (a fraction of what it costs us PWD a month to Not Die), would people actually care enough to try out this little piece of what life is like for someone they care about?

Then I asked myself: would I be willing to set an alarm that would wake me up every 90 minutes all night long, simulating what life is like for my friends with nursing infants? Would I shave my head bald, in solidarity for the clients I would with undergoing cancer treatments? Would I drastically modify my diet for a week, to understand what life is like for my friend with severe Crohns?

Maybe, but realistically not. At least not without a clear sense of why it made sense to support that person in that particular way. Which doesn’t make me a bad friend – I just think that I show my friendship through actions and words in other ways, perhaps more meaningful ways.

So I’ll stop expecting the people in my life to Drop Everything and Experience Diabetes. And I’ll just keep letting them love me in the invaluable ways they do.

 

When Other Diabetics Talk Down to Me

September 30, 2013

I would be lost without the supportive communities and friendships of other PWDs. It’s the peer support and information exchange that keeps many of us from burning out entirely.

That said, sometimes interactions with Type 1s leave me feeling alienated or condescended to.

As a relatively “young” diabetic (diagnosis 3 and a half years ago), it is not uncommon for “older” diabetics to speak to me with an authority that ends up pissing me off. It’s a subtle thing, but I pick up on it.

For example, I recently met a lady who is celebrating her 40th year with type 1 (amazing!). I introduced myself as a type 1 as well, diagnosed at age 26. “Aw, you’re a baby,” she said sweetly.

I’d been called a “baby” enough times to have reflected on the not-coolness of that comment. In a friendly way (cuz the last thing I wanna do is start fights with my fellow T1Ds!) I said, “that’s not cool, I’m not a baby. I’ve had three hard years of 24/hr a day work, and I live this all the time. I’m as diabetic as you are.”

It’s true, I don’t know what it’s like to live decades-long with the disease. I have no first-hand stories of principal-office visits for insulin shots or awkward adolescent diabetic rebellion. I can’t speak about the NPH and R days with any personal authority. But I do have diabetes, and it has consumed more of my life than I’m happy with.

And believe it or not, I know my diabetes better than you know my diabetes.

There’s a subtle difference between offering advice in a collegial way, and in a way that implies that I know less than you do. I’m THRILLED when more experienced diabetics have showed me the ropes. My knowledge of how to fiddle with temp basals and square wave boluses, and simply how to navigate the emotional swampland of burnout, comes almost entirely from other PWDs.  When people offer advice because they know it’s helpful, and they understand where I’m coming from, it’s awesome.

I shut down though when I sense that a diabetic is giving me advice because they think they know best. I once found myself feeling pressured by another PWD to try the sensor. “I’ve already tried the sensor, I just don’t like it,” I had replied. I explained how I just found it information-overload, that it contributed to my sense of technological burnout, that my insurance didn’t cover it, that I regularly got allergic reactions to the adhesive, and that the sensors would often fall out after a day or two. He continued to tell me how great it was, even suggest that I ask my parents to buy me a set of sensors for the year as a present (if my parents are to offer me a several-thousand-dollar gift, I’d rather it go to something I actually want). I didn’t hear him hearing me. I heard that it worked for him, and therefore, in his mind, it ought to work for me.

In another recent conversation with a PWD, I mentioned that I was on a pump-holiday. “I’m really enjoying the pens right now,” I was saying. (And it’s true: it’s been over two months off the pump and I’m really happy about it.) I really wanted to talk about how amazing it felt to be off the pump right now, with someone that can actually understand first-hand what life is like daily on the pump. What I heard instead was a statement about how shots just aren’t effective. She went on to talk about how impossible she finds the pens, how easier life is on the pump. I had wanted to hear: “cool, I’m glad the pens are working for you right now. I’m really happy on the pump.”

I understand why we diabetics can be stubborn, and why we can speak with authority with each other about “what works,” rather than “what works for me.” When we find something that works for us, it’s easy to cling to it emotionally. Diabetes management is so deeply personal that maybe we need to guard it jealously.

Us PWDs need each other. Like any essential relationship, there is always work we can do to improve how we care for one another. And I realize that I am sensitive, maybe reading too much into some of the subtext from these conversations. But my diabetes is mine, and I know it best. It has caused me too much grief, anger, frustration, loss, and growth, for me to let anyone else claim to know it better than me. So I am sensitive. And it is personal.