i am enrolled in a positive psychology class.
kid president = love.
i am enrolled in a positive psychology class.
i am enrolled in a positive psychology class.
kid president = love.
i’ve been hand-writing blog posts.
and projects evolving.
all the secrets.
one of my best friends, mike lawson, told me about how easy it is to give up on an idea if you allow yourself to get credit for it too early into it’s development. he said, ‘as soon as i tell someone about it, i am way less likely to actually do it.’
when i have an idea, i (without hesitation), seek validation.
i want confirmation that the idea is solid before moving forward.
after all, who wants to put a TON of effort toward a no-good-stoopey-poopey idea?
BUT, what mike brought to my attention made me question what motivates project ideas that pop in the ol’ noggin. am i wanting to do it because of the recognition i will get for doing it? or am i driven by a hope to actually change something?
next time i feel compelled to share my recent idea (err, right now), i’ll hold back deny the confirmation and satisfaction that may have returned the idea had i shared.
holy smokies, does that even make sense?
if this idea comes closer to being actualized, i’ll have a thread of evidence and can continue testing my motivations by sharing at various stages of idea-development.
if you have ever brought an idea to fruition, when did you start sharing your progress and how do you think it effected the outcome of your idea?
move onward, my friend, onward
for your enjoyment:
when today rolls around each year, i wonder what i shall do, explore how i should feel.
i sit here, on the day marking the start of my fourteenth year post diagnosis, and question…
should i feel:
thankful for the life i’ve sustained because of medication?
grateful to the scientists (banting) who made my continued life possible?
blue because an unexpected anniversary will forever be a part of my life?
aggravated at the part of my existence, needy and constant, that i cannot change?
appreciative for the gifts and skills i’ve acquired as a result of living with a chronic illness?
pleased with my own resilience since the ever-recycling adversity invited itself to my forever?
frightened to not know how many more diagnosis anniversaries i will see?
morbid because i still consider not having kids in fear of dying and leaving them motherless?
proud of the inner work i have done to build the relationship i have with my disease?
but also terrified that i haven’t gotten far enough?
indebted to the community that has taken me in, offered understanding and care?
wishful that advances in technology will lessen the burden my condition has on my life?
relived because it could be a lot worse?
loving towards the family and friends who have made it feel more okay?
happy to have met friends online who i can support and who support me?
when i sit down and break down how i feel on this day every year, i learn that one sentiment doesn’t cover the bases.
my relationship to diabetes is muddy and convoluted and complex.
‘still diabetic’ is loaded.
it’s messy and, well, that’s the way (uh huh – uh huh) i like it.
it is real.
today, of all the days of the year, i feel the most human.
today is my diaversary, and i’m happy to be here writing this blog post.
for your viewing pleasure:
like pain, it is
a feeling i forget between occurrences.
it is sweeping,
it takes me over entirely,
and i well up inside.
every so often, i feel a glimpse of what is to come
an acknowledgment of the fact that in my life i will ‘do something’
in waves, it approaches.
i felt it.
i felt it when i wrote this paragraph….
in may of next year i will be on staff and facilitate discussions at the diabetes unconference, a new conference that focuses on the psychosocial impact of living with diabetes for people with diabetes. as a leader, i want to introduce an action-based component to the group, so that our efforts may translate into something that branches beyond the weekend-long conference.
and then again when i wrote this one….
i plan to study participatory community research to design a patient engagement protocol. i see myself focusing on a program of research that examines the relationship between community involvement and health outcomes for patients in a particular health group. for example, i might investigate whether or not self-identified advocates tend to have higher rates of self-efficacy. i hope to learn how health communities are formed and the nature of their organic growth by understanding the advocates that lead them. i could also see myself focusing on how a community’s collective perception of their disease indicates or predicts their aptitude for creating and sustaining social change.
i am not sure at which institution i will study, but i know that wherever it is, i will be in the right place.
i am meant to do this.
i can feel it.
a word you hope to only use in benign situations,
also known as the situations that are figurative in nature,
or ones that are devoid of the possibility of cancer.
nearly three months ago, i felt a lump in my breast.
it began with 30 days of ‘it will probably go away’ and ‘it’s fine’
but when it didn’t and it wasn’t, my mind channeled catastrophe mode.
i finally worked up the courage to tell just one person.
feeling a change was just a feeling
it wasn’t quite real until, i shared
jesse. my betrothed.
‘feel this’ i urged.
it will be difficult to forget the look of concern on his face,
the stern tone of his voice, the seriousness.
the twenty-four hours between sharing and seeing a doctor were excruciating. jesse was as supportive as he could be, but there was something missing from his care… he wasn’t a woman.
i needed to tell a woman that wasn’t my mother, i needed to take off my strong face and be scared. lumps aren’t diabetes. cancer isn’t diabetes. other sicknesses aren’t diabetes, but i couldn’t imagine anyone better to call than a trusted friend in the diabetes community.
and i had to, i couldn’t do this alone. my fear was too big and growing.
i reached out and open caring arms greeted me.
in retrospect, i feel very lucky to have been seen so quickly.
my lady doctor checked me out the next day and made a joke about co-morbidity (which i am afflicted with) that made me really laugh. she treated me with the perfect doses of funny and serious, offering the information i needed without any the doom and gloom i’d already been feeling.
a 5cm mass. moveable. the second part was good news.
i’d have preferred to not have the first at all (obvi), but, as it goes…
a history of breast cancer in the family was enough to get me seen by a radiologist promptly the following morning.
i called my mother right after the appointment with my strong face on. ‘it is likely nothing’ i paraphrased. the mammogram and ultrasound are ‘just in case’ things.
i was terrified. stuck in the swamp of memories from when i was eleven and just pre-diagnosis…
‘you’re probably losing weight because you are growing’
‘you probably have no energy because you aren’t eating enough’
‘the weight loss might be explained by an eating disorder’
‘fatigue is normal at this age’
but that time…
it was something
and living through misdiagnosis after misdiagnosis left me skeptical of disease identification in unlikely individuals.
i went in to the mammogram with the mantra, ‘even if it’s something, it’s okay.’
the radiologist didn’t even feel a need to see me, just gave me the green light to go home.
i never heard the word benign, because it couldn’t possibly be anything else.
‘benign’ was irrelevant.
i should have been thrilled.
i walked out, unsatisfied
wanting a second opinion.
i haven’t gotten one yet, and the mass is still here.
taking up residence in a place it barely fits.
begging for attention by lumping around.
i catch myself feeling for it every morning and afternoon and night,
hoping tirelessly that this time is will just. be. gone.
i’m still terrified,
still untrusting of the very medical system that prescribes me the medicine i need to survive.
i’m still having my friends feel it, so that they know what to look for when the self-inspect.
i’m beginning to understand the importance of checking myself regularly.
BUT, this video makes it better.
thank you renza, for bravely writing about this tough subject and helping me find the courage to share my own experience.
if you find something when you self-check, you are bound to experience a slue of feelings and overwhelmed and terror will be two of them. my advice to you, is TELL SOMEONE YOU TRUST. doing that alone is exhausting and horrible and you deserve support. go get some. right now.
as a final note,
to the man at the bar who said, “breast cancer is barely a threat anymore, it is basically like a free boob job,’ i say to you…
‘thanks for the generous tip, but you’re an asshole. now, get the hell out of my bar.’
pinterest me a story
cut out of humble brag postcards wishing you were here
no need for color
i’ll believe your tale without it
weave into it makers and takers
lies and the kind of motivational quotes
that make you think rather than smile
if i can, so can you
bravery is not the fools game
but he plays it better
embrioder it with triangles and tree branches
stick to the thin variety
uniform will be imperative once more
lace it with misunderstanding
thick bones aren’t born
sew up your story behind the heart of the doll
who will help untangle the hair
where i hear you hold your troubles
fashion a cover and
name it something obscure
like a lyric to a song that no one knows
maybe even one you wrote
pick a selling point and start there
fake it till you make it looks good on you
end it with something kindly mystical
i woke up with ketones and i’m feeling pretty shit-tastic.
every keyboard button i press takes a little more effort
every stroke requires a deliberate action
nothing comes natural
except to sit, uncomfortably, and stare at the television
while i pretend to pay attention.
this is only moderate,
it has been worse.
it has been worse.
having ketones is like the funk you can’t snap out of
when your friends try and make you laugh, you understand why their jokes are funny, but you just can’t seem to muster up the energy to lol.
even the smile you put on to thank them for trying comes with a sting
i wanted to share this as it is happening because if i wait until tomorrow when the ketones are gone, there will be a tone of ‘i’m fine now and from this i learned x’
i have written that post before. it was more clear, more articulate, more clever.
here is the truth. i know why i have ketones and i am aware that it is completely my fault. i should have planned better. i should have been more pro-active. i should have changed my site before i went to bed because i KNEW i would run out if i didn’t. i knew.
should, could, might next time.
have you ever treated your pump alerts like a snooze button? five hours without insulin. ick. sick. why did i do it?
well, here is a post without an ending, without a resolution. there is no moral to the story, no assurance that this will be a learning experience.
this is a post in real time, on a bad diabetes day. a bad diabetes day filled with half-thoughts and a boat-load of insulin.
oh, by the way… happy halloween.
ever come face to face with someone harboring a radically different perspective on diabetes?
one that doesn’t jive with yours?
one that you wish you didn’t still hear?
one that takes just a little something from you?
one that hurts your heart and reminds you of how much work there is still to do?
ever meet that person and find out that they host this damaging concept of diabetes even though they-themselves- are a PWD?
i work at a bar. i tend that bar. my uniform for work is a tank-top and shorts. with my diabetes alert tattoos always on display and questions constantly forthcoming, i am finding myself slightly fatigued. i remind myself of the fact that i got these tattoos hoping they would serve as a conversation starter, and thus as a mechanism of diabetes advocacy and education. i got exactly what i wanted from this.
what i did not expect was to be overwhelmed by the lack of knowledge rather than the warm fuzzes from doing the explaining and the desensitization and the re-defining.
having the tattoos is an invitation for questions…
questions i wish i didn’t need to be asked. like, ‘do you have diabetes?’
or ‘were you born with it’
it is so easy to forget how completely uncommon it is to know anything about diabetes before it touches your life.
i did forget.
tending bar reminded me.
week before last, i came face to face with another PWD who had radically differing opinions of diabetes than i.
it was one of the most difficult conversations i’ve had about diabetes to date.
he came in around 4, right after opening. nice guy. had about 2.5 pints before we got along to talking about it. he told me that he was considering a pump. asked me about my experience with it.
i told him it saved my life and even though it does come along with some little nasties-like having to sleep with it and bathe with it and swim with it- it is worth it. to me.
around that time when everything was still fine and dandy, another patron sat beside PWD patron and jumped in to share that he knows nothing about diabetes. there was almost a smile on his face.
PWD patron interjects by beginning to aggressively- bordering violently- explain the difference between type 1 and type 2 and how people always tell him to watch his weight even though his weight has nothing to do with it because he is ‘a TYPE 1’.
i think i went red in the face.
i was there once. i was the PWD patron about three years ago, truly believing that i was educating my peers by drawing a harsh and finger pointing distinction between my obviously more challenging disease and the disease of someone who ‘did it to themselves’
it took the honesty and ball-busting nature of the diabetes online community to show me that my efforts to educate people about diabetes and to raise diabetes awareness in THIS way not only functioned to harass those people who live with type 2, but also worked to emphasize the stigma i thought i was fighting. i was making that stereotype stronger by setting myself so clearly apart from it.
i know this because i watched the non PWD patron react; a sense of enlightenment bestowed upon him. “oh there are two kinds of diabetes and you got the bad kind that no one deserves”
i must have been purple by this point. exploding with a sense of self-loathing for having had this conversation and felt fine about it, i got their attention with a slight huff and puff. they both looked to me and i said something along the lines of:
‘actually, scientists are now finding that diabetes is more of a spectrum disease. a person can be both types if they do not produce any insulin and are also insulin resistant. there are people who are middle-aged, eat perfectly, exercise everyday who are diagnosed with type two. children can be diagnosed with type two. no one is to blame for their body malfunctioning. no one caused their own suffering, and even if they did, who is helped by being told they are the reason they are sick’
i didn’t stop there.
i talked and talked until i was nearly in tears telling them that diabetes is severely misunderstood and misrepresented by the media, by healthcare professionals, family and friends, and even sometimes other people who have diabetes.
and then my fatigue turned into a war cry.
you can imagine, can’t you?
let’s sum it up and just say i needed a 15 minute break to compose and self-help. i did return to work with a smile on my face that day, but a smile masking embarrassment and an uneasiness to oblige the next asker of questions.
in retrospect, i see this as a learning experience for me. you know how you can plan to get more than you planned? this tattoo is giving me more than i planned to plan for. i’m a-growin’ for it.
eagerly awaiting the next trial…
move onward, my friend, onward.
big blue test time is one of my favorite times of the year.
an external reason to get my blood pumping and exercise.
today, i submitted two big blue tests and it wasn’t as challenging as i thought it would be. it wasn’t as grueling as i imagined. in fact, it felt really…good.
today i raised two dollars to help diabetes charities.
today, just by exercising, i did something for my community.
if you still aren’t convinced, look at all these pictures that were taken during big blue test season last year and the year before. and then, if you still need a push – err i mean gentle nudge-, watch the video.
so you have heard of medicine x,
the conference at stanford university that truly integrates patient voice and perspective,
the conference that trends on twitter because the online component is exponential
and maybe you have thought about applying
maybe you decided not to because you aren’t sure you have something unique to contribute
maybe you decided not to because those ePatients are big names and you’re not sure you fit in with them
maybe you decided not to because you didn’t think you would be accepted
maybe you decided not to because you have a propensity to deem yourself unworthy
i am writing to tell you this:
you DO have something unique to contribute: no one else knows how you experience your condition as well as you. you are supremely qualified to lend perspective.
you DO fit in with the big name ePatients: there isn’t a single ePatient who started off ‘big’. they put themselves in situations to grow to get where they are now. they are human. they are patients (just like you) who at one point or another were unsure about which megaphone to use.
you DO have a great chance of being accepted: medicine x scholarship recipients are not selected because they already have a massive following, nor because they have already shown themselves to be a ‘successful’ patient advocate. medicine x scholars are simply patients who see gaps in their health care AND want to do something about it. since the amount of advocacy you have already done is not the determining factor for being selected, even if you don’t have a bazillion twitter followers or write a blog, you are still and viable candidate.
and last but not least,
you ARE worthy. the end. no questions asked. without a single doubt. cross my heart, hope to die. if this is what holds you back the most you should know this… there is only one person in the world who does not support your success, and that is you. and that feels weird to say, but it is TRUE! all of your fellow advocates want you to succeed because we love you, but also because you being there means that as a collective we are closer to making the changes we want to make. you are worthy. you.
you and only you have the ability to share your experiences because no one else has your experiences. they are yours. when you don’t share them, they go unheard.
don’t go unheard.
apply for medicine x 2015, because you’re worthy and because our community deserves a representative like you.
if you are still unsure about applying, listen to this song. bring out all the love you hide and, oh, what a change there’d be…
i believe in you.