Words

The third DBlog Week topic, Language and Diabetes, is one that hits close to home for all of us.  Currently, I’m saving many of my thoughts on the topic in anticipation of Stanford Medicine X in September.  At MedX, I will be participating in an ePatient panel on mental health and chronic disease, and language will surely be discussed there.  We hope you will join us- whether physically at Stanford, or virtually!

In the meantime, please see here for some prior thoughts on the words we use, and how we should use them.

 

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“Wait, what’s diabetes again?”: Perspective from a 9-year-old

“Wait, what’s diabetes again?” my 9-year-old cousin (we’ll call him Daniel), inquired, eyes widening.

The wind suddenly knocked out of me, I deflated like a balloon in my chair at the dinner table.

He doesn’t know?

Thank God he doesn’t know!

How can my response enlighten him while maintaining his innocence, leaving him just the way he is- unscathed by diabetes?

How do I explain a disease that rocked my world by the time I was his age, while simultaneously praying that he never truly has to understand?

My grandmother had been describing a friend who was exhibiting the telltale symptoms of diabetes onset- extreme thirst and sudden weight loss.  Despite being familiar with the disease, my grandmother had not jumped to the diabetes conclusion.  Her friend was older and type 1 diabetes was not on the radar.  Thankfully, her friend was diagnosed and received proper treatment.  One drop of blood was tested in time.

As we lamented the lack of awareness of the warning signs of diabetes, I noticed Daniel’s focus shifting to us.  He fidgeted in his chair, the wheels spinning in his head.

Do I drink a lot?  Do I pee a lot?, he wondered.

Then: “Wait, what’s diabetes again?”

I took a deep breath and blinked back tears, buying some time to regain my composure.

“See this roll on my plate?  When you eat this roll, something called insulin helps you to process the food and receive energy from it.  I have diabetes.  So my body does not make insulin to cover the food that I eat.  I take shots of insulin to stay healthy,” I replied, except there were many more “umms” and much less eloquence in that moment.

Daniel looked directly at me and nodded.

“Oh, okay,” he said, satisfied with my explanation.

And with that he took off, dancing around the living room with the other cousins, back to more pleasant daydreams of race cars and Legos in place of insulin syringes and frequent urination.

Back to the way it should be.

We need a cure.

 

One Year Later: Thank You

One year ago, on September 6, 2014, I was a shadow of the person who I am today. I was gaunt, hungry, and insulin-deprived, the result of months of insulin pump product defects and subsequent health problems due to medication delivery malfunctions. Alone and desperate for answers, I decided to start a diabetes blog from my tiny apartment in Rhode Island. Very Light, No Sugar was created, and technical insulin pump support, as well as general diabetes support, was sought. I thought that I was looking for biomedical engineering answers, but it turns out that I was really looking for something more powerful: empathy and understanding. The diabetic online community (#doc) rose to the occasion.

I distinctly remember, years earlier, sitting at my desk overlooking a soccer field during my junior year of college. I Googled “diabetes blog,” and clicked on sixuntilme.com. Wow, can she write!, I thought, as I nodded my head along with the words that I read and laughed at Kerri’s signature humor. At the time, blogging seemed like something really cool for other people to do, but not for me. I was too busy pretending that diabetes-related anxieties were not affecting my life negatively. What do I really have to say, anyway?

Reflecting on the past year, right now I want to speak to those who think similarly to how I did in college. Trust me here; you do have something to say and something to write. Go for it. The #doc is generally supportive and uplifting, and each member offers a unique perspective peppered with the common bond of diabetes, whether as those with T1D, T2D, LADA, MODY, cystic fibrosis-related diabetes (CFRD), or as friends/family/caregivers. We all “get it.” Your perspective is part of the larger fabric of diabetes which connects us all. Isn’t that voice worth sharing, then?

When I started Very Light, No Sugar, I was the epitome of the dorky new kid on the playground. I tweeted and retweeted and never stopped virtually talking. Even today, live-tweeting my emotions could land me on TLC’s My Strange Addiction. [Insert “thumbs up” emoji].

Back in September of 2014, some criticisms labeled the #doc as too “exclusive.” I had only been in the #doc for a few days or so, but my first impressions of its friendliness meter were positive. So, I threw myself into a Twitter conversation amongst many “#doc pioneers” (i.e. the “big names with big hearts” whom we all love- no need to name-drop here) regarding how to make everyone feel welcome.

Much to their credit, the #doc pioneers did not bite at a newbie who had very little perspective to offer at the time.  To be honest, I did not really belong in that conversation. But they entertained my rookie thoughts, which went something like, “THE #DOC IS GREAT. EVERYONE IS COOL. BE FRIENDS WITH ME!!!” (I’m blushing as I write this). My point here is that when you start a blog, you cannot possibly be as nerdy as I was, and the #doc embraced me. Sooo, again- go for it!

My largest piece of blogging advice would be to foster genuine connections, which begins with being your authentic self. If others take the time to comment on your blog or to tweet at you, write back! Understandably, there are some #doc superstars who get inundated with messages; it is unfair to expect that they can respond to every single one. But for me as a “humble beginner” blogger, I had a lot of time on my hands. So I took an extra few minutes to engage with my audience, and I now consider many of those who I interacted with to be my friends. Also, dive into weekly chats like #DSMA and #DCDE for helpful advice and comradery.

Find your balance. Share as much or as little as you choose, but know that if you open your heart to the #doc, they give great big bear hugs of support. I will forever be indebted to Laddie and Cherise for sharing my Broken Record blog post about my insulin pump issues. The response was more than I ever could have garnered on my own, and it helped me to make the difficult decision to try insulin injections again. (In particular, Caroline’s reassurance that it would be okay sticks out in my mind; thank you.)

While I still have room for improvement in my diabetes management, I can say that I have grown into an emotionally-stronger person through this experience.  I have also learned that each person’s diabetes management choice is a very personal one; do what works for you.  We have plenty of options, and nothing has to be permanent.

Although we are unique individuals, we make up a larger whole- a powerful, inspirational, worldwide community.  At the time of publication of this post, my blog has been viewed in 58 countries, from here in the United States to Madagascar to Afghanistan, and many more globetrotting locations. That fact, in and of itself, has made me a better person. I am no longer desperate and alone. People from all over the world understand and support the same fight against diabetes.  All I can say is, “Wow!”  Although I wish that this disease did not touch so many of us on an international level, it is humbling to know that we are all in this together.

Thank you for hearing me out on the good days and the bad days, and thank you for allowing me to do the same with you. Thank you to those who email or message regularly with me (you know who you are); I cherish the wisdom, strength, and support found in our virtual Pen Pal notes. Thank you to those in the Boston area who came together for our inaugural #BetesOnTap meet-up, which offered social support for diabetics and filled a void in my heart that I had not quite acknowledged before.

I write often about electronic forms of communication, but- with her permission obtained beforehand- I want to note that my first old-fashioned mail came from Hope Duncan in New Zealand (NZ). I admire Hope so much for the wonderful example she sets for youth with diabetes. She is also one of the most talented artists out there, and I encourage you to check out her creations on social media.

Hope’s gift still sits atop my fireplace mantle, a spot reserved for cherished items. Her card explained the gift’s background, stating, “Well, it’s a marae, a little piece of NZ for you in the States. 🙂 The native people in NZ are called Māori and their meeting places are called marae (said like ma-rye)… I hope you can fit it all together. I taped the pieces where they should go, so hopefully that helps.”

Hope marae pic

The marae model (pictured above, along with Hope’s card) represents the #doc to me: a meeting place that feels like home, where all of the puzzle pieces fit together as part of the larger story of community.

One year later, I still want a cure for diabetes to help our community, our marae. I still hope and dream and pray for it every day.

One year later, I am motivated to achieve better health and to try new approaches if needed. Through the #doc, I have a safety net of support to catch me if I fall or to cheer with me when I succeed.  Likewise, I hope that in my own way, I have given the same support back to some of you.

One year later, I look forward to fostering new friendships and learning more in the online world of healthcare interactions, particularly with Stanford Medicine X (#MedX) coming up shortly.

One year later, I still drink very light, no sugar coffee, and one year later, I still lift my coffee mug to all of you.

Thank you, #doc- for everything. Thank you for who you are and for what you do, for advocating long and hard, for listening, for talking, and for caring. You inspire me every day, and I feel so blessed to consider you my friends and diabetes family. Cheers to many more years together!

Love always,

Ally

“Uh-huh.”

When I adopt my future child (see here), the phrase “uh-huh” will probably be worthy of a “Swear Jar” donation according to Ally’s Little Book of Rules.  (All proceeds will go directly to diabetes research- let’s chill out, please!)

“Uh-huh” offends me not because of what it says, but because of what it does not say.  It is an empty phrase which does not even pretend to hide its indifference.

I will be the first to admit that I tend to get overly excited about nerdy diabetes-related things.  I follow diabetes stocks and press releases on my cell phone, enthusiastically peruse the blogosphere, keep up with DiaTribe and DiabetesMine articles, and look for every opportunity to discuss the information I devour.  I have pledged to my doctors on many occasions that I will take a break from healthcare information overload, but it proves to be a difficult task when fighting for your health every day.  Diabetes and healthcare are interests which are inextricably intertwined with my very existence.  They are not the totality of who I am as a person, but they are passions of mine with very stubborn “off” switches.

However, diabetes and healthcare are not everyone else’s passions.  So when I am rambling on and on at happy hour about the latest blood glucose meter technology or that one time I ate the entire carton of ice cream during a nighttime hypoglycemic episode, I need to take a step back and realize that others may not be quite as into this stuff as I am.  Fair enough.  If I could be cured of diabetes tomorrow, I would jump at the chance.  Although I suspect that my interests in diabetes and healthcare may not subside once I am cured, I would not mind finding a new, less serious interest to take up some of my time.  Badminton, anyone?

“Uh-huh” is suitable if I am boring you at the bar with a story that you do not really care about.  “Uh-huh” is not acceptable if I am talking about something deeply emotional that affects my health.  Dexcom software upgrades are one thing, but my personal health triumphs and tribulations are quite another.  If I am describing a diabetes incident that spooked me or a frustrating few days of persistently high blood sugars, I am opening up to you because I want you to hear me.  I trust you.  I want you to value what I am saying as important, to empathize, to not pretend that you know the answers but to simply be there for me nonetheless. 

When you say “uh-huh” on the other end of the phone and change the channel on the television running in the background, what I hear is not “uh-huh.”  Instead, the message conveyed is, “I am sick of this same old story.  Diabetes sucks.  I get it.”  You know what?  It does suck.  And it may continue to suck.  It’s diabetes, and it’s a selfish jerkface.  Sure, I have experienced a rough year of diabetes transitions (insulin pumping to MDI to every emotion felt along the way), but I do not get to “uh-huh” away this disease.  I sure as heck hope that it is not especially difficult every day until there is a cure, but sometimes there are long stretches of time where diabetes is a royal pain in the a$$, whether or not we are talking about Lantus burn at backside injection sites.

We are all human, though, and I caught myself “uh-huh-ing” a friend last week.  My coworkers and I are working from home a majority of the time now, a nice perk for those of us who require multiple cups of coffee before we are properly-functioning each morning.  The downside to working at home is that we do not have one another within walking distance if we need help.  Recently, my friend (let’s call him Jason) called my cell to seek advice on a difficult case.  My blood sugar was a bit rocky in that moment, and I felt the familiar brain fog that accompanies those overtired, rollercoaster health days.

“I’m thinking if we use this regulation, I should be denying this issue,” he said.

“Yeah, but I just emailed you the updated guidance.  We can grant benefits only if that particular symptom is present, which it is here,” I replied, as we went back and forth with medical evidence and legal stipulations to try to make the right decision.

The more we interpreted the guidance on the case, the more I found myself nodding and saying, “right, right, uh-huh” as I clicked through online documents, only half-paying attention to what Jason was trying to tell me at this point.

Frankly, I had made up my mind about what we should do on the case five minutes earlier, and I wanted him to be on the same page.  Eventually, our viewpoints fell somewhere in the middle and we were able to move forward.

The moral of the story is that everybody “uh-huhs” now and then.  At times, I am guilty of what I am critiquing here, too.  So what are we going to do to fix this?

Society often incorrectly relates empathy to having actual experience in the particular situation occurring.  For example, a cancer patient can empathize with another cancer patient, but a person untouched by illness cannot offer any valuable input.  I do not personally believe this.  First off, every person’s cancer or diabetes or death of a parent or any other difficult cross to bear has its own nuances.  We are all different people from different backgrounds with different struggles.  But the common denominator is that we are all human beings.  Because of this, we all know how to empathize.  It does not mean that we have to experience carbon copies of one another’s pain.  Rather, we simply have to offer up messages of support.

Instead of saying “uh-huh” when I describe an aggravating diabetes day, say something like, “I’m sorry.  That sounds so tiring.  Let me know if you need to chat later.”  Please listen.  If I wanted to talk to an empty space, I’d jump rope to the beat of a diabetes jingle or throw a tennis ball against the wall while collecting my thoughts.  But instead, I have chosen to tell you, someone who is so important to me and my diabetes fight.

Acknowledge my pain, but do not feel like you have to magically erase it for me.  Do unto others as you would have them do unto you.  Nowhere in that verse do I hear the phrase “uh-huh.”

I pledge to support you in the same ways that I want to be supported- devoid of “uh-huhs” but generous in understanding.  If I do not know what to say, I will attempt to think twice before muttering an empty rationalization.  “At least it’s not XYZ” belittles the struggle.  Instead, I’ll speak the truth next time: “ABC is very difficult.  Please know that I’m here for you.”  We cannot suddenly cure illness overnight, but we can make a more concerted effort to see each other through tough times.

From now on, let’s walk together, instead of “uh-huh-ing” each other.  Promise? 

New Friends on the #doc Playground

I truly enjoyed my first DBlog Week and want to again thank Karen Graffeo for organizing this for us.  One of my favorite aspects of DBlog Week was discovering blogs that I may not have been aware of prior to this week.  This seems to be the resounding theme from many of the blogs I have perused over the past seven days.  All of the reading material presented was a wonderful representation of our diverse diabetic online community, and I will always remember my inaugural DBlog Week for impressing me with the #doc spirit yet again.

I could probably shout out 100 or more posts that I loved.  Alas, my blood sugar is inconveniently crying out for food, so I am going to highlight two blogs which were new and intriguing to me this week.

In particular, I am happy to have found the blog of Frank over at type1writes.com, as well as the blog of Tamsin at type1diabeater.com.  Both Frank and Tamsin displayed contagious enthusiasm for DBlog Week, and I am so happy that our virtual paths crossed!

Thanks to all in the #doc for an enjoyable experience!  I am already looking forward to the next DBlog Week! 🙂

Favorites and Forgiving Diabetes

My favorite post is one that mostly flew under the radar:  24. P.S. I forgive you.

This post describes how I chose to forgive diabetes for the bad and to reflect on the good I have received during my 24th “diaversary.”  While it was not my most popular post of all time, it openly represents my emotions on a day that is always bittersweet.

Stephen’s short yet powerful comment on this blog post meant a lot to me, as did another I received via Facebook from the mother of a diabetic child who thanked me for writing the things that her son could not yet articulate at a young age.  Those little moments make blogging so worth it.  We can use our words to connect with and encourage others who face similar obstacles each day.  #DOC in a nutshell!

If Diabetes Were A Cinnamon Cure

 

I’m a big fan of Katy’s wit and attitude in Bigfoot Child Have Diabetes, so I wanted to stay true to her suggestion for today’s food-related theme for DBlog Week.  Alas, I am embarrassed to say that I am on the “grad school diet,” a fad that I do not endorse for full health benefits.  It amounts to guzzling coffee at all hours of the day, eating handfuls of peanuts in the car while driving to and from work/school, and scarfing down frozen dinners at 10:00 pm.  Ahh!!

Therefore, I’m playing the Diabetes Personified wild card today, but I’ll keep it food-related! 

One more disclaimer: As a former college English major, I must admit that my take on this exercise does not 100% meet the definition of personification.  Cinnamon “cures” are not people, but they do affect people’s attitudes.  So, please play along with the diabetes-cinnamon analogy here.  Mostly, I just really freakin’ wanted to write this!

If diabetes were to take the form of a cinnamon “cure” concoction that actually worked in a non-spammer world, would I pour it in my coffee and watch the Dexcom CGM line even out with each sip?

Would it fade that scar on my right lower back?  The one where the needle didn’t quite stick in all the way- so the nurse had to fiddle around with it until she could secure it with medical tape?  When she quietly asked if she was hurting me as I fidgeted under her grasp, would I still mutter “It only hurts a little bit” through clenched teeth?  Would my doctor still look on and pretend to believe me, mostly for the sake of my stubborn pride?

Would all of the needles and sleepless nights get swept away in a sea of cinnamon?

Would we inhale it like Afrezza, or tell Uncle Brad to “Pass the cinnamon, please” at Thanksgiving dinner?

Would we keep calm and bolus on?  Or would we keep calm and cinnamon?

If diabetes were a cinnamon cure, would insurance still want Prior Approval?  Would we be limited to one dab of cinnamon per month instead of the five that we might require to live healthy lives?  Would paperwork swallow us whole?

Would some people not have access to cinnamon?  Would we advocate long and hard for them?

What would the spammers say when the cinnamon cure suddenly worked for diabetes as advertised, its years of falsehood erased by a magic wand in the sky?  Would the spammers tap the Staples “That was easy!” button in unison?  Would they move on to the next groups- the cancer and the cystic fibrosis heroes?  Would they diminish the battles that these human beings face each day by promoting a “cure” so ludicrous that society rationalizes its way out of the burden of easing their pain?

“It’s your fault. You didn’t eat the cinnamon.”  And just like that the moral compass gets readjusted!

Would Wilford Brimley still say diabeetus?  Would he order a very light, extra cinnamon coffee at the drive-thru before breaking out in a dance?  Because of course he still has two functioning legs. He didn’t lose them like your grandma’s best friend’s tabby cat’s brother’s cousin did because he “failed” to “control” an autoimmune disease that doesn’t like to follow orders.  He was cured by cinnamon.  You heard it here first!

Would the #doc become the #coc- the Cinnamon Online Community?  Would we have weekly #CSMA chats?  Cinnamon Social Media Advocacy, it’s what all the cured kids are doing!

What happens to a cinnamon cure deferred?  Does its powdery dust make an audible “poof” as it dissipates?

#IWishPeopleKnewThatCinnamon is silly, mon! (Said in best Jamaican accent)

Cinnamon pleases the taste buds, not the islet cells.  If diabetes were as simple as a cinnamon cure, we wouldn’t enjoy all of the hidden blessings that we have grown to love through the complexity of managing this disease as best we can. It’s just not the same having a Kerri / Cinnamon, a Cinnamon Unconference, a @CinnamonCherise, a #dayofcinnamon Symplur hash tag, or a Cinnamon Hands Foundation- to name a few.  The real life diabetes versions of these people, organizations, and events bring far more goodness to the world than cinnamon ever will. Perhaps our virtual paths would not have crossed if silly cinnamon cures actually worked.  #Coc just doesn’t have the same ring to it as #doc, unless your mind is in the gutter!

Occasionally I sprinkle cinnamon in my coffee mug.  Then I check myself in the mirror.  It doesn’t hurt anymore, but the scar is still there on my back, a reminder of a disease that cannot be remedied by simple measures like cinnamon, a visible testament to the care I receive from others despite the pain, part of what gives us perspective and gratitude for the good days.

The needles are still required.  There will be more tears, more laughter, and more perspective gained along the way.  A sprinkle of cinnamon cannot make up for the other ingredients which have shaped our lives.  Wacky cinnamon cure theories do not do justice to the crosses we have carried.

There are no Nutrition Facts on the packaging that is life with diabetes along for the ride- not the other way around.  When we come together as a community, things are sweet enough to enjoy this #doc life for what it is without the artificial flavoring of ridiculous cure remedies.

For now, I’ll take one large coffee.  Very light, no sugar.  Hold the cinnamon, please.