Tag Archives: empathy

My Diabetes Platform for the election.

November 3, 2016 – 9:08 am

Welcome to Diabetes Awareness Month. And since this is also a big election year (and we generally elect candidates and vote on issues in November), let’s merge those two together for the sake of this post.

Oh yeah, I’m going there. For the sake of myself and my friends with diabetes, I’m going there.

I fully recognize that there is more than one way to get things done, and I’ve seen countless examples over the past eight years that there is more than one way to not get things done. Rather than going down party lines, I thought I would lay out my own framework for a more perfect diabetes union. My own policy statement that outlines issues I stand for during this very important election cycle. Here are my thoughts:
 
 
– Any talk of a rework or repeal of the Patient Protection and Affordable Care Act must include a guarantee of coverage for every Amercian, regardless of what they’re living with today and in the future. And an undertaking like this must not take place until all sides can agree that this provision stays in place. If you don’t support that, I won’t even think about voting for you, and should you get elected, I might even go to Washington to protest your stance. Loudly.
Note: they don’t want to “repeal and replace”… they want to take away your right to coverage, and deny it forever. If you’re okay with that, and you’re okay with any coverage you might be lucky enough to get costing more anyway (because they never said it would ever cost less), then go ahead and vote for your candidate(s).

– The Competitive Bidding program set up by the Center for Medicare and Medicaid Services (CMS) must end. As soon as possible. I have friends being harmed by this program today, I will have friends being harmed by this program in the near future, and if it continues, I’m a little over ten years from being harmed by this program myself. People who really know, know this program is wasteful. Make them stop it. Now.

– The cost of drugs and devices necessary to keep us alive is too much. Consider the fact that having to pay extra just for the right to stay alive is asking far too much. Having what is considered to be good coverage that costs me thousands of dollars out of pocket every year is a ridiculous way to say “good coverage”. The cost of staying alive should be significantly reduced. Make it happen. My friends and I will help show you how.

– Patients require a seat at the table. Notice I didn’t say “want”… I said require a seat at the table. When our well-being and overall health are being discussed by Congress, by policy makers, by local and state legislatures, it is unthinkable to exclude patients from weighing in on the very issues that affect us. Trust me: you’re going to hear from us anyway. Don’t let it be while you’re backtracking from an ill-informed decision. Let it be when you’re discussing the very thing that we’re experts at living with. There’s a reason we’re experts at diabetes. We live with it every single day. Help us help you.

– In all you do, remember: People With Diabetes are worthy of your respect, consideration, and empathy. If you don’t yet possess empathy, it’s not too late to get some. Trust me, it will come in handy. All great leaders throughout our history have not only possessed empathy, they have displayed it often in executing the duties of office. All poor leaders in our nation’s history have lacked empathy. It is a necessary component of accepting the responsibility of any public office.

– Finally: if it’s not too much trouble, I’d like a slice of pie on my Diaversary this year. Anything that doesn’t contain marshmallow, meringue, or pudding.
 
 
I’m Stephen Shaul, and I approve this message.

Vote for Diabetes this November. To make your voice heard, PLEASE VOTE. Diabetes Patient Advocacy Coalition makes it easy to share your concerns to all the candidates right now: CLICK HERE.

By StephenS | Posted in Advocacy | Also tagged , , , , | Comments (4)

Diversity of thought.

October 24, 2016 – 9:08 am

As I was growing up, I imagined that at some point, I would be part of a group of friends and colleagues who retained the things that made them unique, while embracing solidarity in the things that made them alike.

Let me tell you, that did not seem possible for a long, long time. In my twenties, a lot of it was my fault. I had exactly zero social skills in those days. It seems like for longer than I care to remember, I had the market cornered on saying the worst possible thing at the worst possible time. Possibly.

Toward the end of my twenties, I met two people who really taught me a lot about communicating with others, and a lot of what it means to show empathy for another human being. And they taught me the importance of listening. Not just listening because every article and blog post on connecting with others says that listening is important. But because others connect with you when you listen. I have learned so much from these people.
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In addition, I began to read a lot more than before, and my interest in history and challenges that people have overcome has helped me see that successful people are not successful 100 percent of the time. Once I realized this, I could begin to make sure that, as the song says “temporary setbacks / are part of what I’d planned”. I could be nicer to people because I wasn’t as worried about appearing to be the most successful person in the room every second of every day.

It’s not like I was a jerk or anything; at least not intentionally. It’s just that I started to be more open to considering other viewpoints, listening to what others had to say. Then one more important development happened:

The internet blew up.

Now I had access to viewpoints from around the globe, something I had been seeking for a long time. Granted, a lot of the viewpoints you read on the internet are completely whacked out, even in the diabetes community.
but many are not. In fact, some of the most insightful, most poignant nuggets I’ve found have been from quiet little corners of the web where, statistically, few ever go.

Has it helped my diabetes? Sure it has. I’ve certainly learned a lot. I’ve been saved from mistakes thanks to a couple of things I’ve read over the years. And I hope I’ve been able to help people learn, and find help, and find support, shouting through my own window onto the information superhighway.

I’ve also been lucky enough to connect in person with many I’ve encountered first via the web. I’ve been able to prove something that was told to me by someone long ago: that privately, most people are pretty much the same as they seem in public. Through this DOC, that means I’ve been able to meet many wonderful souls who continually teach me a lot about being a person who practices both perseverance and empathy in equal measures.

In the end, I’ve been lucky enough to find those special, unique people who share a lot of my goals and hopes for the future. Whether I’ve met them in person or not, I am invested in the things that are important to them. I am hopeful for their futures too, because what’s good for them, and good about them, is good for me too.

So remember to listen. Let your empathetic side show. Invest yourself in the success of others. You’ll find that you’ll learn a lot, care a lot more about people, and find more friends than you could ever imagine.

By StephenS | Posted in Relationships | Also tagged , , , , | Comments (0)

Friday pep talk.

February 6, 2015 – 5:32 am

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As we all know, diabetes is a strange beast. Sometimes our BGs play nice, staying within range, and those of us who practice pre-bolusing actually remember to do so all day. Other times, we’re subject to wild swings, lows that just won’t come up, or highs that can’t be brought down no matter how much insulin we throw at them.

Likewise, we’re stuck with the constant requirements of managing (to the best of our ability) a condition that never plays fair. People not living with diabetes don’t always understand that this disease is not as simple as do a calculation, take a certain amount of insulin, eat perfectly, and our numbers will be awesome all the time. And there’s that little tiny voice in the back of our minds that we try to keep silent, warning us of possible complications. On top of that, let’s face it: We’re human. We’re bound to make a mistake or two (or three). Yuck.

Okay, so we know that things aren’t always perky, right? What do we do about it?

Far be it from me to give advice (famous last words). First, let me give an appreciative nod to this amazing post by Briley at inDependence. In addition, I’m hoping a few reminders here will help you in a moment of diabetes stress. Think of it as a Friday diabetes pep talk.

Yesterday may suck, but it’s yesterday.
That’s the best part of awful numbers, stupid people who think cinnamon will cure you, and CGMs that go kaput in the middle of the night. It’s over. I’m not saying forget about it… that’s impossible. What I am saying is be glad that the moment is over and you survived it. Whether you think you are now or not, you are stronger for it, and the future is unwritten. Carpe Diem, baby.

You count. Diabetes doesn’t.
This is one of those sayings where, sometimes, you have to keep repeating it to yourself over and over again before it sinks in. But like I said, if you’re surviving, it also means you’re living to see another day. For some people, and for some circumstances, that’s not just something… that’s everything. Particularly in America, it’s easy to hide what’s going on. We don’t like to show weakness. We like to pick ourselves up, dust ourselves off, move on. That can be good (see above). The reality, however, is that occasionally it’s good to stop, take a moment or two to compose ourselves (even if it takes all afternoon), and then move on. Doctors are learning more and more that our mental well-being is just as important as our physical well-being. Let’s prove to ourselves that we’ve received that message. Let’s remember that how we feel about things does matter. A lot.

We have more resources than ever before.
In the past month, we’ve seen advances in diabetes technology that many couldn’t see coming a year ago. Meanwhile, there are more diabetes organizations, conferences, and informal get-togethers where peers (you and me living with diabetes) can meet and commiserate. On top of that, there are more diabetes blogs where people like us are sharing our stories, and what was once a fun, quirky Twitter chat has now become a Wednesday night institution. Heck, in just the past week I’ve seen a number people get late night diabetes help and support via Twitter, myself included.

Diabetes takes a lot away from us. It also gifts us with perseverance and empathy. Perseverance to endure the tough times and continue on where non-pancreatically-challenged individuals might indeed falter. And empathy that allows us to recognize when someone needs help and then do something to lift them up. I almost never encounter others with these qualities. Yet they are almost universal in our world.

So why not use our unique qualities to make a great life for ourselves and our diabetes friends going forward? YouCanDoThis. Bring on the day.
 
 
 

By StephenS | Posted in Additional Inspiration | Also tagged , , | Comments (4)

Sailboats.

July 11, 2013 – 9:41 am

Sailboats
I was standing in a conference room at work the other day, waiting for a meeting to start. The room looks out over the Inner Harbor here, and off in the distance I could see a sailing class. Lots of little sailboats tacking back and forth, all with different brightly-colored sails being filled out by the harbor breeze.

Watching that scene made me think about this thing called diabetes. There are a lot of us out there faced with the daily, relentless onslaught of this chronic condition. Tens of millions of us just in the USA. According to the International Diabetes Foundation, there are over 300 million people affected by diabetes across the globe.

But we’re not all the same. Like the little boats in the harbor with green sails and blue sails and pink sails, there are people living with Type 1, Type 2, LADA (Latent Autoimmune Diabetes in Adults), and other forms of this disease. The therapies and drugs available to treat our conditions are even more different than the types themselves.

A Type 1 may be on MDI (multiple daily injections), or may be taking advantage of insulin pump therapy. A Type 2 may be taking a pill to help keep their glucose levels down, or they may ramp up their exercise regimen and change their diet significantly after diagnosis. A person with Type 1, 2, or LADA may consider making the decision to wear a continuous glucose monitor (CGM). Or not.

Some, unfortunately, do not have these decisions to make at all. For many in developing countries, a diabetes diagnosis is a death sentence, either due to lack of insulin, the ability to keep it cold or warm enough, or the lack of ability to pay for it at all, not to mention the absolute dearth of access to care and education. It hurts me to think of the fact that by pure luck, I wound up in a situation where I have access to care and drugs and technology that allow me to lead a good life, while others die for lack of basic necessities.

When it comes to research about diabetes and the search for a cure, there are many different courses charted too. Many doctors are furiously searching for the absolute source of the beginning of diabetes in a person’s beta cells, in the hope that they can stop whatever triggers the disease in the first place. Others are making progress in leaps and bounds by developing technology that, while not providing a cure, may change how we live with diabetes by helping us to stay safe and always keep our blood glucose in a stable range (I’m looking at you, Artificial Pancreas).

So just like those sailboats going east and going west, we’re all headed in different directions. We have our busy lives full of jobs and family and social media, etc. Some of us write about diabetes, some walk for a cure, some ride for a cure. Some have enough to do just fighting the demons within themselves… the ones that say “Give up” or “Why do you keep trying?”. The people who overcome that kind of challenge are champions just as much as those who make headlines and raise thousands and help others.

I’ve said it before: Diabetes comes in many flavors. No two of us are exactly alike. Except that we possess two very special qualities.

We are blessed with empathy. Living with D has made us acutely aware of what it’s like to deal with inexplicable highs and lows on a regular basis. What it’s like to deal with medical professionals who write off anything not great as entirely our fault. What it’s like to listen to people who spread misinformation, then think about it as an educational opportunity. I’m constantly amazed that I have not yet encountered anyone in the Diabetes community (online or not) who is mean or ego-driven. I think that comes from a place of empathy first. We know what it’s like… Your highs are our highs… Your lows are our lows… Your successes are our successes.

We’re also blessed with resilience. We all have the unique skill of being able to get up every day, tote our gear, and treat our condition. Every. Single. Day. How many of us think that before our diagnosis, we’d be able to keep this up for years? Diabetes teaches us resilience, and every day that we hang in there and do what we have to do is a victory.

The songwriter Jason Robert Brown wrote a lyric that goes “We have nothing much in common; but we are more or less the same”. In the song, he was talking about his brother. In my life, I’m talking about my brothers and sisters with Diabetes. We have many differences. But we are all the same.
 
 
 

By StephenS | Posted in Additional Inspiration, Diabetes | Also tagged , | Comments (2)

#DBlogWeek – Day Five. AKA Freaky Friday!

May 17, 2013 – 7:30 am

diabetes-blog-week

We’re right in the middle of Diabetes Blog Week! Myself and many others are posting for 7 (seven!) straight days. This is day five’s post. Haven’t heard of Diabetes Blog Week? Get the lowdown by clicking on the banner above. Now, on to today’s subject:

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)

This is an easier topic for me. Since doing the My Week With Celiac series earlier this year, I feel a special kinship with those dealing with Celiac disease.

Let me tell you… Having to eat gluten free for an entire week was hard. And it’s not just sticking to a gluten free diet. It’s keeping the gluten away from everything you come into contact with throughout your day. Every day. Does that sound hard? You bet it is.

I think that switching out my diabetes for celiac might at least get me to eat healthier. It’s no secret that my diet is a something that needs a lot of work. So going gluten free would at least get me to cut out a lot of the bad carbs. The hard part for me would be to keep from getting “glutened” by trying to eat gluten free, but not keeping everything that’s gluten free away from everything that’s not gluten free. That would be the real difficulty.

Now, has my participation in the DOC (Diabetes Online Community) affected how I treat friends and acquaintances with other medical conditions?

I’ll just repeat what I’ve said in the past: Being cursed with diabetes means that I’ve been blessed with perseverance and empathy. I think that empathy thing is especially true for everyone in the DOC. It seems to me that this community is so welcoming because either nobody else is talking about us at all, or when they are talking about us, they’re saying the wrong things. So when we see others in a similar situation, whether they’re People With Diabetes or People With Another Condition, we instantly feel that empathy. It’s a common thread that’s sewn through all of us.

And I hope that thread stays with us, and stays strong for a long time to come.

P.S. I’m off to Easton, Maryland today for the Chesapeake Bay Tour de Cure. I’ll be riding in the 55 mile event on Saturday. If, by some longshot chance, you see me tomorrow, please say hello.
 
 
 

By StephenS | Posted in Diabetes Blog Week | Also tagged , , | Comments (5)
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