wake up where the clouds are far behind me

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lancet on bed

ever been asked to describe yourself in three words? maybe a friend asked you? maybe you were in an interview? filling out a graduate school application? perhaps you felt like you needed to be really creative, and you knew that just listing ‘creative’ wasn’t creative enough. you wanted to make the reader laugh, so that you didn’t have to write ‘humorist’, or ‘funny’. maybe you wanted to let the reader know that you were a thinker, so you started thinking about ways to show you are a thinker without listing ‘thinker’

i was working in the dhf office today, when mike lawson and i started to brainstorm ideas for a new shirt. i can’t give it away, but know that the base of the shirt design has to do with the theme, ‘describe yourself in three words’ we were just listing character traits or attributes that individuals with diabetes MIGHT use to describe themselves.

here is some of our list:
leader, eclectic, grower, creative, awake, knowledgable, driven, introspective, body-positive, charismatic, articulate, inquisitive, ambitious, hard-working, daring, persistent, genuine, tenacious, reliable, quirky, electric, fun, humorous, etc.

here is something that didn’t make our list:
diabetic

diabetic nor diabetes made our list. we were using it elsewhere, but i just have to point it out that as a character trait, it didn’t come up.

two PWD’s, listing character traits and ‘diabetes’ was forgotten.

oh my sweet potato pie. really?

i have the word ‘diabetic’ tattooed on me! i take pride in it.

at the friends for life conference i told my friend dani p. that if i could go back to when i was 11 and be given the option, “diabetes or no diabetes” that i would walk the same road i have traveled. and i still feel this way.

i would. i would do it again in a heart beat. seriously! i would.

maybe we didn’t put diabetes in there because it isn’t, as is, a character descriptive word.

but heck, i want it to be!!!

being diabetic means being strong in the face of adversity, it means always having at least one full time job, it means membership in the most incredible community there ever was.

being diabetic means being empowered. it means being introspective. it means having ‘excellent troubleshooting skills’

being diabetic means possessing patience and compassion. it means connecting to strangers and offering understanding.

being diabetic means being creative. it means finding new ways to do old things. it means making the most out of crappy circumstances.

being diabetic means being funny and knowing how to laugh at the parts of life that suck.

being diabetic means a badass fun crazy-beautiful amazing awe-inspiring awesome ball of awesomeness.

i am diabetic.

and i AM all those things. i get to be all of those things by default if i choose to accept them into my ‘three words to describe me’

and um, heck yes.

i accept.

my three words:

driven diabetic wanderer

what are yours?

she’s got a ticket to ride, but she don’t care

by

ucb reflection

i need a machete. but we will get to that later.

have you ever had an experience so remarkable that you reflect immediately? the reflection sounds like poetry in your mind. right there. instant, beautiful, reflection. but then the experience is so gripping that alas, you forget. you forget that perfect jaw dropping string of words. then, you maybe get so hung up on losing the perfect, eloquent, prize winning, blue-ribbon, no-better-way-to-describe-it words that the entire experience some how feels lost. maybe you feel like you can’t begin to retell the story until that perfectly polished description magically finds it’s way back into your mind. and then sometimes it doesn’t happen at all. the words never find their way back. maybe, you wait so long for those words, that you can’t think in poetry about new experiences. extraordinary opportunities blend in with what feels mundane and become missed connections and blank blog post drafts.

i have been in this space since the friends for life conference nearly a month ago. it isn’t much like me to be at a loss for words. i’ve considered myself ‘articulate’ since i learned the adjective in 3rd grade.

i am still baffled by my inability to remember the great thoughts i had while there. all of those experiences i no longer have confidence/memory expressing, feel so distant. i keep expecting them to find their way to me like used test strips. used test strips are just lying around everywhere i go, every where i have been, and seemingly every where i will go. they find me in the grocery store, in the office, on pathways, in public restrooms, private restrooms, movie theaters, everywhere.

maybe my tendency towards this passive approach extends beyond writers block.

my passive approach is so protected by beliefs of the universe and how it works to get me where i need to be. i know i am an intuitive feeler. i take risks when i feel like i should. i listen to street sounds, watch stop lights, and predict sirens and horns honking. i do this to affirm my current location in space and time.

i’m passive when i feel like i should, i take risks when i feel some kind of external push from the ‘universe’, which generally takes the form of consecutive coincidences during normal life routine.

i do what i am doing until i get some kind of feeling to do something more or something else. if there is a driver in me somewhere, i must listen well. my body makes for a great passenger. i’m trusting.

that all sounds great, doesn’t it? listening to the universe and your inner drive? letting life guide you as you go? being open enough to allow opportunity to present itself while simultaneously having enough conviction that what you’re doing is what you are supposed to be doing to avoid tragedy or crisis?

here’s the problem with what seems great and ooh la la good time:

i’ve lost my diabetes gold like i’ve lost my perfect, eloquent, prize winning, blue-ribbon, no-better-way-to-describe-it FFL memory words.

like with writers block, i keep waiting for my diabetes numbers to just magically improve. i keep thinking that when my body’s chemistry changes, when i am outside of this period of diabetes-epic-fail-no-matter-how-hard-i-try, management will just become easier. it will just change on its own when the universe is ready for it to. great management will find its way to me like used test strips. in the grocery store, in the office, on pathways, in public restrooms, private restrooms, movie theaters, everywhere.

that kind of hands off success sounds so good and so tempting. and i’m so excited for the day it all changes.

i just can’t wait to find it!

i mean, i really can’t wait to find it.

i need to find it now.

does some one have a treasure map?

a little piece of paper with an X on it that will lead me to the diabetes gold?

and maybe a machete?

a machete would be good too, so i can start hacking away at all of the tall grass in my way of the path to the diabetes gold. slashing away all my bad habits, like eating cheetos and cookies everyday. like serial watching law and order three times a week.

it doesn’t even have to be a magic machete. just a really sharp one.

do you have one for me?

i’d really like to start playing an active role again.

i want my diabetes gold back.

In Time We See

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It has been a year since this post and exactly five years of great hugs, smooches, and support from my man, Jesse. He has been such an inspiration in my life. I love him and his bright yellow spirit and energy. Oh boy, I just love this guy so much. Some one pinch me.

jess and me golf

jesseleewalker's avatarViviendo en Argentina

July 29th –

As you make the decision to travel and leave your home and place of comfort behind, many things happen. You start to see yourself outside of your natural environment. You see how your personality mixes with the rest of the people around you, and more than anything you begin to understand what you really want from life. It’s a hard thing to want to follow the career path I’ve chosen, knowing how much I will have to sacrifice. My 20’s aren’t going to be wild and crazy, I don’t have the time to pursue my artistic endeavors as fully, and at times this leaves me scared and afraid that I’m making the wrong decision.

These are the feelings that I think prompted this trip to Argentina. I wanted to feel like I still had the time to be youthful, to let go of my responsibilities, and just…

View original post 809 more words

boop-oop-a-doop

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grandma betty

this is a post i have been hoping i wouldn’t have to write, the loss i wish i wasn’t experiencing, the type of news no one hopes to share.

my longest living relative passed away last wednesday. her name was betty lee gabel and she was my grandma.

in her memory, i would like to share a little about her. mostly because she was a fantastic, amazing, exuberant, whitty, super fun, ball of awesomeness and deserves more than a little shout out.. but also because i didn’t get to say goodbye and if the internet floats above me then it must be closer to heaven (or whatever place spirits reside once released from the body) than i can reach. maybe it will get to her.

my grandma betty was a story teller, her memories were filled with vivid and often hilarious details; and boy did she know how to deliver a punchline.
my grandma betty taught me how to play poker and how to shuffle cards the proper way, bridge and all.
she taught me how to burp secretly, as a “woman should” when i was about 8 years old.
she laughed out loud every time someone went to take her photo, every smile was genuine.
she worked her ass off in a factory making turkey timers for years to provide for her family.
she was as sharp as a tack, always had a puzzle going and did crosswords constantly.
if i could sing her a song, it might be ‘oh you fancy huh’.
my grandma betty was a record keeper. she kept her food ration stamps from the war, and all of the love letters my grandpa wrote to woo her with.
she raised my dad (for those who know him, you know how GRAND of a feat that truly is).
my grandma betty had the greatest sense of humor, sometimes a little raunchy, which made it even funnier.
she was a gem and just a down right pleasure to be around.
she was loving and sweet and full of happiness.
my grandma betty had type 2 diabetes, and no diabetes related complications.
her obituary names diabetes hands foundation as the benafctor of any in honor of contributions made in her name.
my grandma betty had a beautifully long, rich life.
she passed peacefully, ready for and unafraid of whatever is waiting for her.

if my time turner necklace worked, i would go back to before she passed and say i love you one last time. i would thank her for being such a strong independent woman. i would thank her for having enough patience and courage to raise my dad 😉 (with the help of my aunt beanhead of course). i would do everything possible to express gratitude every single one of her life choices, and thus for my existence. i would tell her that she was the perfect grandma and that i am honored to be her descendent.

family

i would tell her that should i ever have a daughter, her name will be betty lee.

i hope you are up there doing cartwheels, grandma.

i’ll look forward to meeting you again.

someone like you

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the friends for life conference brought this video into existence. take a look.

after i find time to decompress from the whole event, i will post more.

but for now, this will suffice. no?

it’s my mouth, i can say what i want to

by

t1d hand

have you ever met some one several times in settings like parties or get togethers? you really want to talk and get to know them, but every time the conversation delves to a slightly deeper level, another person, who you also want to talk to rolls up. and then the energy changes and new conversations arise. later you think back to what that initial deeper level conversation might have brought. you wonder if you might have left feeling closer to that person that you only see in these public gatherings. you maybe even wonder if there is some potential bond you are missing out on.

thanks to the diabetes scholars foundation and the diabetes hands foundation, i am able to attend for my first year. i’m here. right now. and since, apparently, i get jet lag from a three hour time difference, i am sitting up, awake and in bed, blogging.

today, at the children with diabetes friends for life conference, i have to say that many of the potentially deeper level connections have gotten lost in the organized chaos of the kind of public gatherings where everyone knows everyone and hugs are to be given and had and shared.

maybe its the first day gitters. maybe the deeper level stuff has yet to come. maybe there are golden D relationship nuggets hiding and i just haven’t found them yet.

but so far, there have been conversations that end like this:

“we don’t have the luxury of alternate realities.”

now, doesn’t that sound like a lost golden nugget?

melissa lee. i fully expect to continue this conversation before we retreat to our home regions. that conversation was golden and i just can’t let it go.

__________________________ apart from lost golden nuggets ________________________

firsts that from here can only be seconds:

today, for the first time, i met PWDs from canada (tayler, elyssa, and chad).

today, for the first time, i ate from tables where i didn’t have to guestimate the carbs because the count was provided FOR EVERYTHING.

today, for the first time, diabetes made me laugh so hard my abs got a work out.

today scott strange said “nice to put a face to a blog”

today i said out loud for the very first time, ‘i am a diabetes blogger’

like the ceiling can’t hold us

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sillopho

i’ve been writing about identity and my approach to the self lately. so i wanted to share and expose another aspect of my notion of what creates or at least strengthens my sense of self.

my name is heather, but i have been called many other names in my 22 years of life so far. here is a list of the nick names i have been offered and by whom:

heath = Jesse
heather rose = walker family and my mom when she is mad
false teeth heath = myspace
hej = adam G and annie b
haja = susan, art, dad
shmeth = renee and shane
heathballs = emily coles
cheddddda = Susie Johnson
bug = dad and mom
lumpy = dad and grandma
little man = eli fletcher
heather cheddar cheese = sarak kasander and morgan johnson
strong friend = paige, josh, jeremy, and avery
star sister = amanda and lisa from sweden
pump girl = jim alison
bruce = alison lee
child b = mom and dad

nick names can be a reflection of who i am right? do your nick names speak to who you are?

so show me family, all the blood that i will bleed

by

mary gabel

have you ever been catching up with an old friend, a friend from way way back when, and they tell you a story that involves you, but one that you can’t remember? maybe their story paints you in an unfavorable light. they tell you about how you tricked them into something, how you scared them, or how unstable you were when your 6th grade boyfriend broke up with you to date the 7th grade girl who wasn’t just pretending to have boobs. you wonder if the tale they are sharing is okay to repeat, if you should accept it into your repertoire of “me stories”. and maybe you decide that their story isn’t okay, it doesn’t agree with your self image. then you wonder, what now? how do i reconcile this new information? does it change the person i am have become?

this may sound very self-involved, but as an adult, i have always wanted to meet the child version of me. i don’t have many memories of life before diabetes. i don’t remember what i cared about other than boys, basketball, and cheetos. i don’t have memories of how i played or what i felt. and i’ve been pondering this because i see the person i was as a child as somehow essential to my being. it’s as if my child self is a more purified version of the self i am today. less convoluted.

i used this notion to explore who i used to be and thus who i must be now, since who i was then is the truest reflection of who i am now. it got me into a lot of trouble.

according to this self exploration approach, i have uncovered the following aspects of my ‘nature’:

1. i was/am mean
2. i took/take advantage of my friends
3. i was/am boy crazy
4. i was/am annoying
5. i had less sugar my blood and now have more
6. i, by choice, spent/spend a lot of time with adults
7. i had/have a strong sense of justice
8. i liked/like to talk about myself
9. i was/am tricky and manipulative
10. i was/am a wuss

after asking family and friends about how i was as a kid, doing all this self evaluation and then coming to the conclusion that i didn’t like or admire the person i was/am, i decided that the “i was in my purest form back then’ approach wasn’t healthy for me. and i have been doing this for YEARS.

i decided that this approach of past-self exploration didn’t speak to who i am now.

what speaks to who i am now are the choices i have made to change the things i didn’t like about my own behavior before i knew they were happening.

what defines who i am is what i do with my visceral responses to various triggers.

what shows my true colors is how i cope with my own feelings.

……. okay, how does diabetes fit in?

well, like this. ……

if i can reposition my thoughts to see all the positive changes i have made in my own diabetes care, instead of focusing on the aspects of my ‘self’ that prevent me from managing well, then maybe i will find that managing is less burdensome.

maybe i will stop comparing the me i was before diabetes and the me i am now, with diabetes.

accepting that i am better with diabetes than without may change my overall disposition toward this disease, which would help me relocate my energy from subtle anger to compassion.

having compassion for myself, as i already know, will positively impact my self image, the way i treat myself, and thus how well i am able to cope with diabetes stresses.

since how i cope with my own feelings is a truer reflection of who i am now, then working on those coping strategies is where my first effort should be.

_______________________________

i can’t say that this is a thought i have had recently. it was been on my mind since i was a sophomore in college. i even developed and facilitated a course at cal called “global perspectives, methods of coping.”

i do however find myself reverting to my old approach all the time. it happened recently and it was like i had to do the emotional work all over again.

but i did it and it was worth it. again.

i guess my point here is that, making personal change doesn’t happen at once. habits are habits and adopting new methods is challenging. i want to tell you and the future me that wherever you are mentally is OKAY and NORMAL.

you’re okay.

move onward, my friend, onward.

.

what it is, what it does, what it is, what it isn’t.

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grilled

have you ever gone out to dinner with a foodie? they know everything about how their pasta was made, how hot the oven must have been to perfectly crisp the chips you are sharing, or how their wine was decanted. they spit all of these facts at you about what region the food is probably coming from, and ask you questions like “do you prefer goat cheese from sweden or italy?” while you sit, hearing things like al dente or beurre blanc or bearnaise, you kind of cringe because you have no idea what they are talking about. you nod and hope that they wont ask you how you feel about it because all you could muster up is ‘it tastes good’. you look down at your plate of who knows what and wonder, ‘where’s the grilled cheese?’

being at the 2013 America Diabetes Association 73rd Annual Scientific Sessions felt like sitting at a table with a foodie, having no idea what people are talking about, even though they are talking about something you know like the back of your hand. like food. for me, and in this case, it was diabetes.

i am 22 (diabetic for 11), and this week at 2013 ADA, i was lost in terminology and conversation. i didn’t understand diabetes anymore.

i worried so much about feeling credible that i didn’t say much of anything. i rarely added my experience to the conversation, and when i did, it ended up being me mostly just asking for advice.

the first night i joined the conversation, and i have to believe it was because i felt safe, was at a DOC dinner put on by J&J. it was a seat yourself kind of dinner and i semi-uncomfortably moseyed to the back, passing all of the full tables, wondering who i would sit with since everyone i arrived with was already seated. when i looked up and saw scott johnson, my step got quicker. i hurried to sit next to him. it was THE scott johnson!

during the dinner we were challenged to discuss, as a table, the topic of how to bridge the gap between PWD’s and healthcare providers, industry people, pharma companies, etc etc.

Scott and i were the two PWD’s at the table, and i was expecting to just do my normal thing and let him answer their questions and guide the conversation. i was expecting that because i carry with me the idea that a person has to earn the right to talk. that is, i have to really know what i am talking about to talk about it. it’s important to be credible and not just shoot the shit.

i have grappled with this a lot lately as i transition from youthhood to adulthood, but it was scott’s willingness to let me speak that led me to realize how strongly i let this feeling troll my interactions with members of the DOC prior to this dinner.

i really got to thinking about how to step outside of initial starstruckness and open up knowing that the greats of the DOC can and are willing to accept me as a peer.

scott johnson is someone i have been following for a long time. i wasn’t surprised he was as wonderful as he was, but I was surprised at his willingness to allow me the space to speak as much as i did. i didn’t just put in two cents, i put in 95 or 100.

scott is a, dare I say it, veteran, or better yet pioneer, of d-blogging. for almost 10 years, he has been writing, and since he was 5, he has lived with diabetes. for him to listen and be open was incredibly refreshing. his patience was evident, as it sometimes takes me a short explanation to arrive at a point. and then, near the end of the conversation, he called me ‘a good egg’.

i can’t remember who said that to me last, but it brought back this nostalgic kind of confirmation of my person and my passion that i haven’t felt in a while.

it was like a ‘you’re doing good kid’ kind of thing but without the implicit ‘i’m an adult and you’re a kid’ tone.

did i need confirmation and affirmation and good vibes that i am doing good to keep doing what i am doing? not necessarily, but it adds to my strong conviction that this community is remarkable.

i am so proud to be writing in this community. i want to do whatever i can to be the person that scott johnson was to me the night of the J&J dinner.

thank you scott, for listening and allowing for the safe space i needed to step into my power at the ADA2013. thank you for talking about grilled cheese instead of the full size chicken on my plate that i didn’t know how to eat. it made a world of difference and will always be a ‘great moment’ in my life.

who else did i talk grilled cheese with at ADA2013? kerri sparling. this lady has some fire in her and it was crazy awesome to get to know her. sweet charise. when i saw her at cocktails and carbs i had to jump up for a hug, she has so much power and it is super evident, she is a woman after my own heart. these three really made me feel not only welcome, but like a piece of the puzzle. i left filled with gratitude and happiness.

can’t take my eyes off of you

by

betty gabel

pictured: my grandmother, betty gabel, type 2 insulin-dependent diabetic

i’ve been trying to write this post for a while, trying to find the best way to articulate the meaning behind the conversation i am about to tell you about in a way that accurately depicts the complex nature of the topic.

i’ve rolled it on all of its sides, and cannot find a better way to explain it than this. bear with me.

the backstory:
i have, for most of my time as a diabetic, been cognizant and understanding of the notion that people outside of the d community show themselves to be two things regarding diabetes. curious and uneducated. i have, like all of you, shone those individuals compassion when they ask me why i am wearing a pager, or ask me how often i have to check my sugar levels. i have always seen those moments of curiosity as opportunities to educate.

another ever pervading theme within the “i have diabetes” introduction is the “my aunt died of diabetes” kind of response. it has happened so many times that i have certainly lost count and other PWD’s have spoken on the same issue. why does this happen? i’ve always figured it is rooted in two intentions. first, the stranger wants to connect with me and feels it is appropriate to do so in this way. second, the stranger is genuinely trying to help me, or warn me that taking care of myself is important. i think that the strangers truly believe that sharing their loss with me will have a positive impact, which is what has led me to believe their comments are well-intentioned. i’ve never felt like a stranger’s ‘my friend died of diabetes’ was maliciously said to hurt my feelings.

my usual reaction to a stranger sharing this information has always been the same, “i’m sorry for your loss.” and then the conversation generally moves elsewhere.

since becoming an active agent in the diabetes online community and sharing this sentiment with my d friends at home, i have been preparing what i would say the next time someone made a comment like this to me. and i seemed to settle into a response to their morbid comments.

speed up to current time. last week:

it happened. a stranger said “my friend’s daughter died of diabetes” after i had finished telling her how i had struggled with management as a teen. i had the opportunity to educate and i took it.

(not exact words) conversation:

me: …so diabetes was hard because it was very isolating and i didn’t know anyone as a teen.

her: (head nod) my friend’s daughter died of diabetes and …

……i cut her off

me: you know, (name), i have to tell you that what you just said is something i hear a lot. and while i appreciate that you are trying to connect with me i have to ask you, if i told you i had cancer, would you ever share with me that your friend’s daughter died of cancer?

her: (looking a little shocked) no.

me: i am not telling you this because i want you to feel bad, but just to ask you to extend the same compassion you would to someone who had a disease as ‘serious’ as cancer to those with diabetes.

her: i can’t believe i said that since i have been reading this book about having compassion for youth with cancer.

she went on to tell me about this book.

—
she responded wonderfully, and exactly the way i would have hoped during my planning process. however, i left that day feeling weird about the interaction. why had i decided on this approach? yes, people with diabetes deserve more sensitivity and compassion. yes, people with diabetes should take every opportunity to educate those around us. but, why does it take introducing a comparison to cancer to get the point across?

maybe you have another idea, and i would really love to hear it in a comment, but to me, i see it as necessary because of this: the general population believes that diabetes is a patient caused disease, and cancer is bad luck. put another way, people with diabetes were asking for it, and people with cancer were not. as we all know in the d community, this is not true. and introducing this comparison must work to debunk that notion, right?

people with diabetes do not ask for diabetes, we do not behave poorly and bring it on through our actions. people with diabetes are not to blame for their circumstances. and just to be clear, i am not talking type 1 only. neither people with type 1 nor type 2 deserve their struggle. there is a such thing as sugar addiction, and it is common. that is chemical. obesity CAN be genetic. that is chemical. no one looks at a piece of cake and says, “i think ill eat this so i get diabetes.’ people with diabetes are people, we are human beings, and we deserve compassion and sensitivity.

 
the challenge:
yes, these strangers have good intentions. they say these awful things to connect with us, and to help us. but if we keep allowing ourselves be uncomfortable so that the stranger who isn’t fortunate enough to understand the insensitive nature of their comment will remain comfortable, then this commonly held belief, which functions to break us down and deplete our desire as PWD’s to keep working hard to manage our diabetes, will not change.

let’s not let those comments pass. we have to change the way the general public sees diabetes.

you may feel better equipped to handle the feeling of being uncomfortable. you live with diabetes: you live comfortably doing uncomfortable things. i know, i am used to discomfort too.

but i now know that i don’t always have to sacrifice my feelings to make someone else feel good about doing/saying something they shouldn’t, something destructive.

change the game and stand with me.

plan what you will say next time this happens to you. plan it kindly, with good intentions.

be uncomfortable, but be so by speaking up, not by letting people darken your day with good intentioned (but ignorant) comments that break management morale.

you deserve more. i deserve more. the diabetes community deserves more.

collectively we have great power to bring out compassion in our friends and family, and in strangers that say the wrong thing in an attempt to offer support.

let’s create movement in the insufficient standard practice of discussion surrounding diabetes

let’s move onward, my friends, onward.