Tag Archives: reflections

Stop Assuming You Know How I Feel

Not 24 hours ago did I read a blog post that kind of blew my mind. It wasn’t in the sense that I was exposed to something new and life-changing, but it connected the dots and made sense of a lot of commonalities that have society-changing results.

Heather Gabel, who I have yet to meet in person, writes in “The Things They Don’t Want to See” about people with disabilities and the assumptions made about them. Analogized through staring, the assumptions result as insults and are biased to those making them. I won’t butcher it anymore. If you want, read it.

This quote summed the whole thing up perfectly:

MY EXISTENCE IS NOT LIMITED TO THE IMAGINING OF WHAT IT MUST BE, BUT IT IS IMPACTED BY THE KNOWLEDGE THAT WHAT I DO TO SURVIVE CONSISTS OF THE THINGS THEY DON’T WANT TO SEE.

C’mon… how many times have you heard, “I don’t know how you can take shots every day. I wouldn’t be able to do it.” The typical response to this, if you’re anything like me is something like, “Trust me. You’d do anything in order to stay alive.”

I started thinking about situations like this– comments, questions, assumptions– where I was pigeon-holed. I mean, on top of the assumptions about being Latina, I also get assumptions from both sides about my diabetes. One is invisible, until I make them aware, whether it’s through answering their question about my insulin pump being a pager or in telling a story. The other is visible because of my features, tan skin and dark hair but also my last name and the languages I speak.

About four years ago, I developed vitiligo. It’s not necessarily tied to diabetes, but the fact that I have one autoimmune disease, I’m susceptible to more. While others have thyroid issues and celiac disease, I lose pigmentation of my skin. I’m saying this because it’s true: It’s not a big deal. Compared to diabetes and thyroid issues and all those other lovely autoimmune issues, vitiligo has no harmful effects besides horrendous sun burn. No pigmentation = no protection = very sensitive skin. I’m basically turning white. There have been super stars and super models with it, but who am I?

People don’t mind staring at me. Some ask if there is something wrong. Other’s ask if it’s temporary. Others just stare. Good thing I’m loud and present. I don’t mind answering questions because that person had the courage to ask about something that s/he assumes I’m sensitive about. I’m not.

A colleague of mine only addressed my vitiligo after I told him that I wasn’t born this way– which many also assume. “Can I ask you a question? That is, if you don’t mind me asking,” he said one day. I told him I didn’t care. This isn’t as bad as diabetes can get. I just don’t have color and my color, or lack thereof, shouldn’t be what makes people treat me differently. Isn’t that racism of some sort? Xenophobic?

No one will ever understand what it feels like to be the person who has assumptions made on the daily because she is Latina, has diabetes, is a woman and has vitiligo. Lucky for the rest of the world, you’ll never have to really guess how I feel. My face, tonality and diction speak for me. People make assumptions about me every day and in the end, I really don’t care because I know who I am. However, this still has to change.

I agree with Heather when she takes it down to the minute details. Encouraging your children to feel comfortable and telling them that people are different in so many different ways can one day help both sides. Don’t assume that we’re all sensitive, bitter or afraid, because we aren’t. We’re normal.

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Filed under Culture, Diabetes, Health, Personal, Stories

Do you keep diabetes a secret?

Diabetes, as we all know, can’t be seen on a person. But wouldn’t it be cool if people with diabetes suddenly had purple eyes or lighting bolt shapes in their hair? It’d be even better if we developed some sort of superpower. I guess you can say, our superpower is the ability to manage our lives, to supercede any doubt, to live everyday like it’s our last because just about 50 years ago, it might have been. Thanks to modern medicine and technology, we’re able to live with diabetes for 50, 60, 75 plus years without question.

No, you can’t see diabetes. You can see actions though. You can watch someone check their blood sugar, take an insulin shot, swallow a pill, mentally count their carbs, program their pump to deliver a scheduled bolus and even adjust a basal rate. But seeing it, no. You can’t see beta cells being attacked, unless under a microscope and even then– I have no idea if that’s possible.

Unless someone sees my pump, they really don’t know that I have diabetes. We’ve been in that situation before– you know, when people think my pump is a pager or something of the like? I hate to break their heart when I tell them, no, I’m not a doctor.

A few years back, when I initially thought about writing this blog post, I read something that asked the question, “Where do you hide your pump?” I then proceeded to read comments that dissected the question and said things like, “I don’t hide it. I’m not ashamed.” Fair assessment. I never thought about “hiding” my pump either. But was that something I was doing when I strapped a band around my leg to clip the pump so that you couldn’t see I had it on when I wore a dress? Was that what I was doing when I clipped it to my bra so that I looked like Iron Man? Was the fact that I was trying to disguise it or camouflage it under or between something else actually “hiding”?

I then thought about the stories of people who hid the fact that they had diabetes on purpose. They thought they were a liability to their job. They were ashamed for not taking care of themselves (to an extent). They didn’t want to be different from their peers. They didn’t want anyone thinking they were different or were incapable of doing something.

I suppose that it is a choice to “come out.” There is a choice in talking about it all the time, in joining our online communities, in educating other people, even if it’s correcting the term “diabetic” to “people with diabetes.” We’re not defined by our inability to make insulin, but by the ability to supercede it and conquer the world through gifts we’ve been given by science and technology.

I guess I could choose to keep diabetes out of the conversation, but it’s created such a strong person through acceptance. I see so many strong people who discuss, bring to light and fight through issues that we all go through because we don’t make one measly little hormone. It’s such a tiny thing that has such a huge impact, and I’ve said it before.

Diabetes has given me the ability to believe in myself, it’s given me the voice to speak, it’s given me the drive to help. Diabetes has made me develop into the person that I am, although it doesn’t define who I am or will be. It’s helped to make me confident and knowledgeable. It’s tied into the rest of my communal beliefs and has only made me a more well-rounded person with abilities to lead, write, organize and make people understand.

Have I kept diabetes a secret? No. Have I hid my pump for fashion’s sake? Yes. But what you gonna do? I don’t think I’ll ever keep diabetes out of the equation. I don’t think you should either. Be proud. You’ve come this far and you have so much more to go.

 

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No Awareness Needed

Can I just say that I didn’t know it was National Diabetes Month?

I mean, I knew it but I thought it was diabetes AWARENESS month. I guess now that diabetes isn’t a rarity, there needs to be more acknowledgement of the illness and not so much awareness building. I once wrote a blog about how it wasn’t a six-degrees of separation as much as it was one degree. It seems like everyone knows someone with diabetes nowadays.

When I was first diagnosed, I remember people giving me apples and fruit on Halloween. That was no fun. I preferred arts and crafts instead. I also had kids thinking that I was contagious, that I was privileged (since I could go to the bathroom any time I needed to) and that I was teacher’s pet. She bought sugar free candies for me that the kids thought were special. Yes, I AM special.

I had other kids try to steal my glucose tablets in school. “Why do you get candy?” “Why do you have a can of Coke in your locker?” “Why do you have sandwich crackers?” At that time, all I knew is that if I ever felt shaky, I would have to eat that stuff. It never happened. At the end of the year, I’d throw out stale crackers and hot cans of Coke. I cannot remember my blood sugar ever dropping when I was in grammar school.

I think back on growing up with diabetes and I laugh. Not because it’s funny, but because the way of thinking about diabetes was so old school, for lack of better terminology. It was very limiting and in fact, may have been easier to manage with all those restrictions. Now that doctors tell you that you’re not limited and you have to count carbs the freedom is cool to have but at the same time makes it more difficult to keep in check, that is unless you restrict your own diet from things you know you shouldn’t be eating.

In the end, you realize what your body is made for– veggies. Lots of them. Food becomes more complicated with freedom. As opposed to “normal bodies” we have to consider what’s being consumed all the time. As a person with diabetes, you realize what exactly is healthy for your body because you see the repercussions of eating crapola or something that you didn’t realize would affect you so negatively.

You know how they say, you are what you eat? It’s more true for people with diabetes. We eat too much sugar and even though we take insulin we slump. It’s terrible. You feel slow, sleepy, fat, cranky and full of regret. You’d think knowing this would stop us from indulging– nope. It happens.

This month, I plan on writing a lot. I want to definitely add to this blog since I haven’t been in quite some time and hopefully get into a groove with it all. Since I’m not bringing “Awareness” to anyone anymore, I’ll just tell you what it’s like to live with this little thing called Type 1. 

Here’s to National Diabetes Month! Happy November!  

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Reality Check: How long is forever?

Today I decided to take a day off. I’m always doing something, always going somewhere, but today, I wanted to spend time at home, clean and go grocery shopping. It’s the simple things in life sometimes that make the rest worthwhile, right? It could also be that I needed a mental health day because yesterday I was so distracted and all over the place.

I walked into the fiscal department at work yesterday only to see Tish Parker in her corner. Tish and I met at our new employee orientation and since then she makes the effort to occasionally stop by my closet of an office to say hi, I return the gesture. I found out that she, too, is a writer although of the fictitious genre. When I walked in, she said hi, always greeting me with a beautiful smile and called me over. She pointed to my pump and asked what it was. Apparently her sister-in-law is also diabetic and uses a pump but she didn’t put two and two together until I explained it to her. She thought it was an MP3 player of some sort and I said, well, at least you didn’t think it was a throwback and call it a pager.

I started explaining how the pump is used and how it works to a point when she asked, “So it’s forever?” And when she said that, I didn’t know how to take it and said, “Well, I change it every three days, but yes, I’m most likely going to have to use it forever.” Which put my mind into a whirlwind. Forever.

Or until there’s a cure, but at this point, I feel that I will not live to see one. The fact of the matter is, I will be connected to this contraption for the rest of my life, something I didn’t fully wrap my head around until she said it. I knew I would have to take shots forever, that was easy to come by, yet thinking about it now, the pump does feel temporary although it isn’t. It’s forever.

It took me back to the day that I found out I was actually diabetic. My mom called me over to check my blood sugar, which at the time, I didn’t understand. I knew I had to do it because the doctors said so, but the significance behind it, I didn’t quite comprehend yet. We were about to have dinner when my mom pricked my pointer finger to squeeze out some blood. “Mom,” I said looking up at her, “am I going to have to do this for the rest of my life?” I think the question broke her heart.

What did that mean? FOR THE REST OF MY LIFE. As a grew up, I looked into what the rest of my life was going to be like. It went something like this: Over time you will lose your eyesight, be at risk for cardiac problems, get amputations and die. Fun, huh? Well, everyone dies, right? I already knew that part. But dying prematurely is what gets everyone. As a diabetic, five years is already cut off my life span. So if I was going to live until 100, I’d die at 95. That’s cool. I’ll take it.

The issue is that throughout my younger years, no one told me straight out what being diabetic meant. No one explained the repercussions, the decisions I’d have to make, the consequences. It was just, “If you don’t stop…” or “If you don’t cut back…” Doctors didn’t try to make living with the disorder easier, they were just trying to make me stop living.

Now it’s, “If you don’t control…” or “If you don’t lower your A1c…” The same tactics that are used today were used with me back then, as a child. Awful. They scared me into being healthy, they didn’t teach me how it all worked. They were passing down the stresses of having a diabetic child to my parents who thought they had done something wrong. They didn’t try to expand on my forever, they scared me into thinking about forever and living a terrible, terrible life of pain agony and losing my legs. It was also the 90s. I’d like to think times have changed.

But yes, to my dismay, I’m going to be connected to this little purple machine for the rest of my life. At this point, I can only think of having something smaller but never not having anything at all. I see it as a benefit. We’ve transitioned from a pump that you had to carry around in a backpack to a little thing that looks like a pager. Brilliant. Let’s see where life leads us next. What does your FOREVER look like?

 

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Filed under Diabetes, Health, Personal, Stories, Treatments