#NoFilter Coffee?

In my enthusiasm for the start of DBlog Week yesterday, I did not give a proper shout out to Karen Graffeo until the Comments section of my post.  I’d like to rectify that here.  This is my first DBlog Week, and I am absolutely loving the discovery of blogs that I did not know about beforehand, as well as hearing from my usual favorites.  How cool is this community?  Seriously.  It’s bursting with goodness this week.  I am sure that organizing DBlog Week involves tons of hard work on Karen’s part.  Not only that, but every time I go to comment on a post, I see that she has already left her words of wisdom behind!  What a great example of giving back to this powerful community.  Thank you, Karen!

Here’s my take on today’s theme, “Keep It To Yourself”:

Those of you who read my blog or follow me on Twitter already know that I wear my heart on my sleeve and I speak with #nofilter in the heat of the moment.  There are some things that I have been rather coy about, though.

When I first began blogging in September 2014, I vowed to be transparent, and I still uphold that promise.  Sometimes it makes me feel like I need to share everything, though.  Realistically, I can be honest and helpful in the diabetic online community without jeopardizing the privacy of those who have not necessarily signed up to be featured on a diabetes blog.

When I was in high school, I used to hide behind bathroom stall doors when taking insulin injections.  My classmates did not know that I was diabetic until the end of my freshman year. I built up my “diabetes coming out party” so much in my head that I turned it into a much bigger deal than it was in reality. Once I was cool with diabetes, everybody else was, too. For the sake of living my life with more ease and with more safeguards in place in case of an emergency, I eventually disclosed that I was diabetic. A weight was immediately lifted. No more hiding syringes in my coat pocket. No more making excuses about why I had to sit out for a few minutes at soccer practice while my blood sugar came up from a low. The rest is history. Now ya’ll can’t shut me up about diabetes, right?

We all come to terms with diabetes in our own unique ways. Some people may always choose to be private about diabetes. Others might spread the diabetes Gospel loud and proud. We are all individuals, and just because I am outspoken about my life with diabetes does not mean that it is the right path for someone else to follow.

  • I have a type one diabetic relative who I have alluded to at times.  For the sake of my relative’s privacy, I do not mention personally-identifiable details online.  While my relative is not necessarily shy about diabetes, I also do not feel that it is my place to tell my relative’s story. It is not my own story to tell. If/when my relative ever wants to get involved in the #doc, I will always support that choice. But ultimately that choice is up to my relative, not me.
  • I also hint at my employment duties at times, not necessarily because I have some big, fancy, secretive job, but more because in a selfish way the #doc for me represents a little cocoon in which I go to seek comfort and strength. If I mingle my professional life with the #doc, it loses that element of “everybody gets it here” that I have grown to love. This is not to say that diabetes and professional lives do not mix. Heck, there are plenty of #doc success stories to show that one’s passion can become a great job. This is just where I am here and now, and right now I need the unconditional support that I find in the #doc. No strings attached.
  • I have never named my personal doctors and nurses on my blog. They did not sign on the dotted line to become the heroes that I describe in my writing, so I do not give their identities away. They may be humble about what they do, for example. I try to respect those boundaries. This is not to say that I would not disclose that information in the right moments. If someone lived in my geographic area and thought that my personal doctor could help him/her, by all means I would ask my doctor’s permission to pass along contact information. The point is similar to what I noted above with my diabetic relative: I try my best to respect that perhaps others do not want the spotlight on them.
  • My tweets have also been vague regarding the topics of mental health and sexual/physical assault, also out of respect for friends near and dear to me who are some of the strongest people in the world. Just know that I support their advocacy causes wholeheartedly. Society is starting to turn the corner on stigma in these situations, but we still have a heck of a long way to go.

With the final point in mind, I invite you to foster a Coffee Convo with someone who may need it.

It is okay to have #nofilter. But sometimes we do not need to yell things from the rooftops to get the job done. We can respect others’ privacy and still show the world that we care. I kindly ask you and your coffee cup to do so.

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That Time I Asked the Cancer Version of the “Dumb Diabetes Question”

We’ve all rolled our eyes and stomped our feet at the ignorant diabetes phrases thrown at us over the years.

“You’re on the thin side.  How on earth do you have diabetes?”  Probably because my islet cells could care less about the size of my jeans.  Those aren’t the kind of “jeans” we need to focus on here.

These moments frustrate the heck out of me, but once I sarcastically detail the encounter on Twitter, I start to delve a bit deeper.  The people posing the questions do not live with diabetes each day.  Their fingers are not freckled from thousands of finger sticks.  The term “ketones” just sounds like a raspberry smoothie that Dr. Oz would recommend to get in shape.  “Scar Tissue” is nothing more than a Red Hot Chili Peppers song.

They’ve lived unscathed by diabetes, for the most part.  I can’t fault them for that.  Although I love all of you in the #doc and cherish the positive mark you’ve left on my life, at the same time, I wish that no one had diabetes.  I hope that those who do not have it gain a bit of perspective and inspiration by watching us carry the cross.  Sometimes that process takes time, though.

There is also a psychological element to the “dumb” questions.  They may not be so dumb, per se.  They are, rather, a defense mechanism.  Damn!  My friend suffers sometimes!  I want to control it and ease her pain.  She looks flustered.  I can’t just snap my fingers and make it better!  All of those thoughts roll through their minds while they watch me inject insulin or drop everything when the doctor calls.  Human beings, for the most part, want to help; diabetes is confusing when it comes to figuring out how. Fair enough.  I’m still learning, and heck, I’m the one experienced at living it.

The tables were turned on me recently.  I was in their shoes for a moment, and I asked the same silly questions because I didn’t know what else to do.

Providence is a small city.  As much as I poke fun of it, that’s part of the reason why I love it so much.  We have a mini community downtown.  If I need a break from work gossip, I stroll over to the local coffee shop, where I quickly observe that every office has its own dramatic story.

I walk by the Italian badass barber each morning- tough on the outside but soft on the inside.  His Chihuahua’s unbridled love for him confirms this.  When badass barber nods at me, I feel cool in the “I’m a high school freshman but the senior soccer captain just waved to me” sort of way.

I consider the disabled and the homeless my friends. They have taught me more about human resilience through our interactions than any school book will ever do.

*Names have been changed to protect the privacy of those discussed here.

There is John- always smiling, always happy.  He lifts weights at the Y each morning.  The would-be-understandable-excuse of being in a wheelchair is the farthest thought from his mind.  His humble example inspires all of us who know him.

There is another John who is down on his luck but sharp as a tack intellectually.  The brain beneath the scraggly mop of hair is a curious, gifted one.

Agnes doesn’t yet know this, but she kept me in grad school when it was getting hard to stay afloat. She reminded me that education is a gift, no matter what the circumstances may be.

“I want you to know that I’m going to move eventually.  I won’t be sitting on this stoop much longer.  I hope you don’t think that I’m taking advantage when I ask you to buy my lunch.  I’m just… SO hungry.  But I’m going to get my GED.  And an apartment.  My health will improve and I can get a job. I take my lunch to the library and I study there every week.”

Finally, there is Deana. But that’s Sister Deana to you and I. She preaches the Gospel on the street corner, talks to the birds as they eat the crust from her sandwich, and blesses the passersby of Providence. Sister Deana hasn’t looked well recently. The cancer has spread, and I am more emotional about it than I like to show on the outside.

For years, Sister Deana has lifted my mood during my afternoon walks. She is blunt yet kind all in one, a humorous combination. “Got any blessings for me?” is translated to “Where’s my money?” Yet if I’m short on cash, she still has a few prayers to send my way.

She sleeps in the street after her chemo rounds while the young professionals are careful not to trip over her tired body.

“Is there some sort of help that the hospital can provide for you? It’s not good to be out here exposed to the cold and the germs right after chemo,” I explain, citing WebMD wannabe medical knowledge.

“I don’t want help. I want my independence,” she replies.

Me too, I acknowledge in my head, reflecting on all of the times that I have pushed helping hands away during my own health struggles.

Desperately hoping that she will somehow be okay, clinging to any sense of security that may still linger, I ask the dumb question:

“Well, the chemo must be making you feel better, right?”

Someone please slap me. Chemo and feeling good aren’t normally associated in the same sentence. I know this. But I am trying to control the situation, to convert my naïve wishes that my friend’s pain will somehow be eased into her reality. I don’t know the right thing to say, so I say the first thing that comes to mind. It is not the right thing, but it is something. And for a brief moment, I feel fabricated relief that perhaps my words were comforting.

How many times have my friends seen this scenario play out in front of them? They have watched me projectile vomit my lunch, the ketones too thick in my blood. They have witnessed the wrath in my verbal outbursts as I see spots from high blood sugars. They have felt helpless and useless as a vindictive disease beats its prey bloody. That prey is their friend. They want to make it better, but don’t know how.

Sometimes just being there is all we need to do.   

“Better?! Honey, I scream through the chemo!” she laughs.

But she doesn’t bite my head off, either. She doesn’t angrily snap at me about how I should have known better. She doesn’t roll her eyes or tell me how ignorant I am. Instead, she calmly explains how the chemo wipes out her energy, how she would rather be on the street where she is comfortable than alone in a scary hospital room. I nod my head as a wave of understanding consumes me.

She really doesn’t feel well because she doesn’t want a Snickers bar this time- just her signature can of Coke. I place it into her outstretched hands and leave her resting her head against the brick wall of the vacant building. The birds finish off the bread crumbs and fly away.

 

 

Please keep Sister Deana in your prayers.