“there must be those among whom we can sit down and weep and still be counted as warriors.”
― adrienne rich
grotesque? maybe.
creative? hells yes.
me in a moment of weakness? not-a-chance.
me in a moment of strength? you-betcha.
you-betcha.
blood? nah, it’s tempera kids paint mixed with water and splashy splashed on my face using a spray bottle.
creative expression is simply good for the soul.
mmmm feels good.
a1c a1c, here we go again.
feeling a little stuck: habit changes, diet changes, exercise additions
a1c same same same.
i know nothing as demoralizing as changing your diabetes habits and not seeing any diabetes change. it is like trying to dig a hole in cement with a rubber shovel. stressful and even while putting your energy into it, you know it isn’t bloody likely to work.
will this get easier, i’m left to wonder
where is my metal shovel? my jackhammer?
or am i just digging in the wrong place?
is there softer ground somewhere other than here?
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i wrote the above bit the day after master lab. thanks to diabetes advocates via diabetes hands foundation, i was able to attend in person.
i stored that post away because it was intended as a coming out story. inspired by the openness of master lab, the collective support system, and moving offers to engage in more advocacy efforts and initiatives by my (dare i call them) peers.
however, even after all the inspiration and motivation, my courage to share waned.
master lab was pretty incredible. a great many advocates in the room (find links to some of the blog coverage below), and a swelling sense of purpose illuminated by ‘we can do this’ talks and presentations.
the master lab came at the beginning of the friends for life conference, and this year for me was nothing short of a major emotionally-charged challenge.
i’d been traveling since may, had just left home and moved to a new state, and had a low under 45 every morning since we got there.
i was pre-disposed to breakdown, having checked off all the parameters forming a perfect head-storm.
overly aware of my ick-tastic toxic thoughts about identity and getting older (i know i’m not old enough for this process to begin), i found myself a clam. holding onto and conceling the parts of me i like best, i became sick with hesitation.
in the midst of master lab and all the grandness with which it was, i stayed closed and secretive. conflicted. hiding.
you see, i am 23 going on 24. i’m not ‘college age’ anymore, but i’m not quite an adult adult yet either (although i suppose that bit is my choice). i just got engaged, so while suberbly exhilarating, another wrench in the ‘find others like me’ mission became slightly more murky.
this year at friends for life, i spread myself too thin. i tried to straddle my time with one leg DOC and one leg college. i got lost in the here and there and rarely felt fully present where i was.
as the week went on, a quote from paul madden at master lab kept creeping up into my thoughts…
he said: “if you don’t stretch your limits, you set your limits”
and the truth was, i stretched and didn’t set. i lived by that maxim while at friends for life and it took everything out of me.
i’m not even sure there is a point to this post any more, if not just to say: i wish that i’d been more present and less stratified.
i wish i’d been in a better head space.
i wish i’d advocated for myself like i’d been learning to do for our community at master lab.
i wish i’d been stronger.
with that said, i cannot fail to mention that we sure are a sensitive group of people. in my time of inner-conflict at ffl, many of you stepped up with open arms and generously allowed me to just be there. there was no pushing or prodding. just a kind gentleness. i’m always thankful to you for that.
so, pardon me for this exercise in flow-of-consciousness nonsense i am calling a blog post.
now. someone suggest a good sad song!
______ for your enjoyment ___________________________
blogs covering master lab:
stephen at happy-medium
sue at diabetes ramblings
mike at diabetes mine
brian at tudiabetes.org
kim at texting my pancreas
chris at a consequence of hypoglycemia
rich at rich the diabetic
christel at the perfect d
adam at diatribe
rachel at refreshing d
david at diabetes daily
meri at our diabetic life
kate at sweet success
kelly at diabetesaliciousness
alana at life on t1
diabetes action hub via diabetes hands foundation i.e. diabetes advocates
struck i was, by the call to depart from violent language
number four.
right there. ilana jacqueline typed the words i couldn’t shape in a blog post.
pushing my chronic pressure points, laughing and crying and relating. i wanted to reach out and hug her.
you’re not living with chronic illness if you’re “fighting” it,
she says,
you’re not living if you’re fighting
at last, at last! proof! another being feeling trampled by the jarring, taring, crashing, shooting, breaking, trampling diction of chronic disease
the death diction dramatizing the harshness of my day to day existence,
i get it
i get why we need it
the money! the funds!
gimmie my program
my research, my daughter, my son
undo the struggle, give back the careless childhood
i get why we need it, the money, the funds
we must communicate the importance of our cause.
battle. fight. beat it. run. win. win it. kill it done.
ladies and gentlemen. these words sting me like a priest asking god to forgive the sins that washed this disease over me to begin with.
like something with an end point, changing, brewing, fixing
be it dramatic, my feeling is valid
and true.
invisible house, pounding invisible doors, withdrawing into nothing but disappointment
why haven’t we moved past this?
i was drafted to a flowering meadow disguised as a war
where sunshine looks like bloodshed and blossoms like scars
where weeds look like time bombs and…
my life is not a battlefield, and my pump is not a gun.
pardon my abandonment
tell you once i don’t want it, and change it?
i will
i’ll search for and find a treatment for this language
a treatment’s not a cure, but i’ll work out that too.
i’ll be it, not preach it
the exodus of violence in my day well lived
a most grand transcendence from fight and compete
to bold and complete
from grenade to morning dew
from trench to divot
fear to matrimony
together, in tandem
yes
yes
indeed.
read me my vows, i’ll dance and say i do
if we work together,
try
try
with all we’ve got
well, we will get as far as we get…
knowing well we met in a flowering meadow and lived our days
most of our days
not scratching and death-trapping
but
really
kindly caring
it’s here! it’s here! IT’S HERE!
try not to see yourself in the pathology.
i’m pulling out my old books and some new ones as i delve back in to the kind of diabetes research that stimulates my need-to-do-good faculties.
reading and reading:
remembering not to ruminate
to find meaning
to seek benefit
to stress less
to write more.
this morning has been an explosion of epiphany in the sound of this:
amidst these reminders and this charming song, something fabulous happened:
my mind wandered,
and i went on facebook.
there, many diabetes friends posting their written works, their stories and tales, predictions and art.
like and arrow to the chest, it hit me. i hadn’t read diabetes blogs in forevs and i needed to pick back up on that right now. this instant. right now, right now.
so i did and i am and i’m feeling more relief than i have since i drove away from my home base of six years to make home anew.
so thank you DOC, for feeding me right when i needed to be fed. for being alive and welcoming regardless of time or place. for doing what you do.
i’m jumping back on the DOC train. checkin-in.
more to come. asap (pronounced as a word, not an acronym).
——–
thank you to chris for suggesting that today be a check in day (#dblogcheck). i’ll be more than a lurker today.
this post is not drug related, despite the title.
or, well, i guess it is.
insulin is a drug isn’t it?
correction to that first line there: this post is indeed drug related.
LIFE UPDATE
i moved to mesa, arizona on sunday night. yes, i did mean to write night. we left berkeley, california around 9pm and drove 12 hours straight through the night. we made it to our new home around 9am with a full day of car and van unloading to do.
elements that screw with bgs:
-not sleeping
-not sleeping because you are driving all night
-hot hot sun
-moving schtuff to the third floor
-moving schtuff to the third floor with no elevator
-moving schtuff to the third floor with no elevator in the hot hot sun
-moving schtuff to the third floor with no elevator in the hot hot sun with no sleep
-having a beer to celebrate getting moved in
-having a beer to celebrate getting moved in after moving schtuff to the third floor with no elevator in the hot hot sun with no sleep
fast forward to now:
i expected things to go wonky, but i didn’t expect this
low after low after low.
54
48
32
63
48
it’s like my pancreas kicked into gear or something.
sweet heavens of jupiter! move to arizona and de ‘betes cure you’ll have.
yes, i’m more active than i’ve been.
yes, the temperature takes a toll.*******(see side bar below)
yes, boozy schmoozy adds an extra bell to the curve.
but this amount of turbulence i wouldn’t have anticipated.
i’ve got mamma’s voice ringing in my ears:
basal testing dear, you must conduct basal testing. 😉 gotcha.
i am actually STOKED to find a new endocrinologist here.
i’ve got to work this schtuff out soon.
sheesh, it’s been rough.
how about you?:
if you’ve experienced weirdness during or just after a move, how did it go? wonky-ness? any sense of normalcy through this would really help.
*****sidebar*****
at ada scientific sessions 2014 in san francisco, i heard and read about research for heating pads around the pump site to increase insulin absorption. could the heat be functioning like the heating pad? could it be heating my body and thus increasing my absorption rate? where is gary scheiner when you need him?
patient and waiting for the chance to ask,
a woman in the back stands to say
“my patients are asking, ‘why me?’ and i don’t know what to say.”
there, right there, i wanted to shift my body weight from my butt to my feet, throw my arms up in the air and say, “EXACTLY!”
that’s why we are here
that’s why people with diabetes are work work workin’ to contribute to the diabetes online community.
that question, among others, is why we reach out with open arms and hearts and minds to strangers who are only qualified to propose an answer because of their exposure to the same tough life circumstance that brings the questions.
why not just seek answers on our own?
why not just look inward, or at faith, or to science?
because being in a space where others are also asking, “why me” transforms the question entirely:
instead of asking “why me?”, you wonder “why us?”
inclusive. enlightening. loving. moving. inspiring. transformative.
there is nothing more powerful than community
nothing more powerful for the individual
and nothing more powerful for the collective.
the end.
ps. i’m not the only one thinking this, right?:
– – – – – – – – – – – – – – – – – – – – – – – –
this post was inspired by a session at ADA scientific sessions 2014 in san francisco. i applied for and received a media pass to the conference. i will be posting more about this conference and you can find other accounts at the perfect d, your diabetes may vary, six until me, scott’s diabetes, diabetes hands foundation, our diabetic life, sweetly voiced, a consequence of hypoglycemia, the blood sugar whisperer, and on twitter with #DOCatADA and #2014ADA. if you have covered the conference and are not linked here, please let me know and i will add you to the list.
one-oh-five
one hundred and five
105.
105. my blood sugar after a hike up and down the mountain.
no feelings of going low: no shakes, sweats, or frights
105. my score and my win.
taken at the start of a calming and deserved sit down looking over vancouver, canada.
the hike behind us and dinner ahead.
grouse mountain.
what a nice place to be.
it is shorts and a sweatshirt weather.
cloud free, although i rather enjoy a good cloudy day, this day is sharply clear
and evermore, freeing
105. i show him the number.
‘nice!‘ he replies, a high five made of sound waves
we sit together at 105.
‘stand up and i’ll take some pictures’ he suggests.
it is the most breath-taking view we have encountered with privacy since riding the gondola up, up, up to the base before the bigger gain.
“should i take my sweatshirt off?” i wonder and then ask.
“yeah” he agrees sweetly.
105. i want to be here forever, i think as he wraps his arms around me,
our eyes facing out to the topography of vancouver.
studying the grooves and points of nature and man, together we fall in love with this place.
“i know we just talked about not feeling a need to rush anything” he whispers in my ear.
“but…”
he goes on….
i don’t ever want to be without your either, i think as he presents his love in words.
105. the number of beats per second.
i can feel his blood surging
heart leaping through his yellow button down,
banging kindly on my back.
are you here with me, his heart keeps asking
holding tightly, he begins to turn around…
he faces me without letting go
an intense offering made through the lock of our eyes
he smiles softly.
“i don’t have a newsroom…” he says as he begins to kneel to the pebbled sierra, the only soul bearing witness to our unfolding history
“…but i do have a mountain.”
reaching in his pocket, is he really reaching in his pocket?
a trinket box, brilliantly blue and textured.
i’m present here.
i’m here.
we are here.
of course, of course, of course.
105. the number of times i nodded in a hug squat,
holding, embracing, loving
moving a new ring around and around and around to feel all it’s ridges.
us.
tiny tears in our eyes
wide grins and smooth ‘i can’t believe this is happening‘ laughter.
we stand, hand in hand, and walk toward our first dinner as somehow more than we had been moments before.
bigger. grander. stronger.
105.
one hundred and five.
one oh five.
http://instagram.com/p/jP9GOjDjqB/
yes.
that.just.happened.
watch it again.
———————————————–
it’s a WILDCARD diabetes blog week prompt:
Write a short story personifying a diabetes tool you use on a daily basis. A meter, syringe, pump, pill, etc. Give it a personality and a name and let it speak through you. What would it be happy about, upset about, mad about?
Tell Me a Story Wildcard Link List.
ps.
MANTRAS MANTRAS MANTRAS MANTRAS MANTRAS MANTRAS MANTRAS MANTRAS MANTRAS MANTRAS
……………………………………………………………………to live by.
quit slackin’ and make shit happen.
….while you’re doing that, keep in mind that the only thing constant is change.
…….when things get wonky, know that better management is not a destination, but rather a way of life
……….while forming happy habits, remember that the most supremely qualified person to make it better is you.
…………. and whatever you do, put effort forth to love more and worry less.
ps. if you can’t find a mantra today, mike lawson is pretty famous for serving them up on mondays:
final note (thank you STEPHEN for reminding me to share)….
NEVER GIVE UP. NEVER SURRENDER !!!!!!!! — via galaxy quest
__________________________________________________________________________
today’s diabetes blog week prompt:
Today we are getting back to the positive with our topic Mantras and More. Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets you through a hard day? Or, more specifically, a hard diabetes day? Something positive you tell yourself, or mantras, or what you fall back on to get you through. Maybe we’ve done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)
Unexpected Blues 