We Are Dying For a Cure

We Are Dying For a Cure

We Are Dying For a Cure

By: Eddy Murphy

 

I’ve fought off writing about diabetes in an honest and truthful way for almost fifteen years. I guess it’s taken me that long to come out of a state of denial, becoming more intimate with it than anything I’ve ever been passionate about.

Perhaps my shame is what has gotten the best of me. I never wanted to admit that, by default, I was weaker than everyone else around me. It has taken me this long to realize that I’m stronger than everyone I know.

I’ve hazily confronted death more than fifty times, waking up in a hospital more than once, or coming to my senses watching my mother wince in pain, holding her belly, saying I inadvertently punched her in the gut while in the throes of a hypoglycemic seizure.

We were both soaked in orange juice turning sticky, when whatever sugar made its way into my bloodstream, brought me back from the brink of death. And because of times like these, it has been hard for me to accept my worth as a human being.

I hate drawing insulin out of a syringe, knowing it could be my last.

I hate doing my necessary rituals of survival in front of my friends, backpacking through the mountains of my heart, because, in the moment, everything else is beautiful.

I just want to revel in the earth that is my home, and then I have to confront this ugly thing, grab it by the horns and tell it I’m not going anywhere. Not now. I’m going to live this moment.

There’s this superficial feeling I get, where I am validating myself by taking type 1 diabetes on, thirty miles from nowhere while experiencing the most beautiful places I have ever been. As if I’m doing things most other people are afraid to do, while being at the mercy of the whims of an overpriced drug that I have to love and hate simultaneously. It is a feat to come out of every trip into the mountains unscathed, deflecting a scythe with a smile.

Before, I would have life-altering lows to bring me out of my denial. I would only check my sugars 3 or so times a day, not catching highs until way beyond their reign. And seldom would I realize I was two glucose tabs away from death, getting closely reacquainted with diabetes when my hands began to seize and I couldn’t speak. Thankfully, circumstances have worked in my favor all these years. Someone was there, or I caught the tail end of consciousness before things went too far down.

Now, I’m a man. A man who feels his age and more. I love a woman with every flame left in my soul. I am grateful that someone accepts me for all my shortcomings; more importantly, I am grateful that someone appreciates the enormity of my life’s battle. What a human thing it is to love. It is the music of the human experience and I get to embrace it after all these years of not feeling human anymore.

Consequentially, I feel the need to revel in every moment I spend with this beautiful person. My life has been an imitation of the real thing for fifteen years until now. Love knows no diseases. Because of this, I am even more angrier now than ever before about the ugly greed of the pharmaceutical companies, the FDAs lackadaisical approach to pushing forward a potential cure/cure’s, and the ignorance of the general public to the suffering of 1.2 million people who have been stripped of a future.

I mean this in every sense. 1.2 million people in this country could die at any moment, yet ‘with proper management could live a happy and fulfilling life’.

Because of the requirement of insulin and the perpetuity of type 1 diabetes, it is a cash cow for large pharmaceutical companies and doctors across the country. And if my life ends in tragedy, I can be blamed by citing “improper management”. At least they got their bag of silver, and will still do so as long as this disease remains with a cure and profitable.

So for now, my wallet is being squeezed dry, and I’m being forced to be grateful for just being alive. I have no assets. I will never be able to afford the land in Montana I want. In truth, I am living in what would amount to Great Depression standards of living. And the public doesn’t know or care because the majority of the media attention is given to type 2 diabetes.

No one gives heed to our deadly fight because diabetes as a whole is linked to laziness and poor diet.

In the meantime, all of our non-type 1 friends will continue to make jokes about us shooting up drugs and having too much sugar as a kid. Many in the support community are cute about type 1. “Christmas is a time to be grateful” and “T1D looks like me”. I am not sure if censorship helps the cause. Trying to make others aware of this dangerous disease by dodging the real tragedy of it is what has stunted any real instigation of progress in the type 1 activism culture. Victims cower in the corner, unsure of how to convince the general public of the need for a cure.

The last fifteen years I resigned my unworthiness to type 1 diabetes, and couldn’t fathom the heroics of what I did by walking through the mountains to improve my life. I couldn’t fathom my own significance in educating people about the injustices we face everyday, and the urgency of this moment.

We are dying for a cure.  


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Where Is The Love For Diabetes?

Where Is The Love For Diabetes?

…Not the love for the needles, insulin injections, finger sticks, and blood.

But love as in compassion, empathy, and understanding for those battling diabetes.

Society has made diabetes such a shameful word. While patients with heart disease and cancer are often showered with sympathy, people with diabetes are criticized and blamed for causing it themselves.

The negative perception has a profound effect on how those living with diabetes are able to manage. The misconception that eating too much sugar causes Type 1 Diabetes (an autoimmune disease), contributes to many cases of misdiagnosis and sometimes even death.

Even the fact that Type 2 Diabetes (insulin resistance) can be contributed by eating unhealthy, excessive weight, and inactivity; that’s not always the case. Genetics can also play a role in Type 2 Diabetes, and even significant lifestyle changes may not always help manage the disease.

Diabetes has become a “shame and blame” game. It’s easier to place the blame, feed into what the media says, and make jokes. Leaving those living with diabetes to feel ashamed of their own disease.

But it’s very difficult to overcome the stereotypes with this disease.

For instance, I spent much of my childhood struggling with the fact that I had Type 1 diabetes. I went to school and I felt embarrassed by having a disease others didn’t understand and mocked.

I wouldn’t check my blood sugar or take needle injections in public. I would get stared at and was teased for taking “drugs” when this drug (insulin) was the only thing keeping me alive.

Years later I started informing more and more people I met about my disease. For many, I hear it was the first time they have ever heard of Type 1 Diabetes. Many also assumed that eating too much sugar caused my diabetes. But I kept pressing because I starting realizing that knowledge is power.

It never occurs to people that diabetes can happen to anyone, at any age. That diabetes can happen even if you eat healthy and exercise. Most of the world isn’t informed on how life-threatening and deadly this disease is. I’m lucky I’m here today, and thankful I was diagnosed in time. I didn’t know what diabetes was before I was diagnosed.

Now reflecting on this issue after a decade, I realize that the stigma hasn’t changed.

I’ve spoken with many in the diabetes community. Half are against the jokes and understand the dangerous repercussions. While the other half feel it’s important to not let what others say get to you. That even if we push, nobody will understand the disease anyways.

But I believe if we’re going to fight everyday, we should fight to make ours and other lives better in any way. The more people know… the more research being done… the more money being raised… the more access to devices and resources… the more awareness being spread about the issues and struggles many go through everyday.

We fight a battle that many don’t understand… but why do we have to fight it alone?

If we don’t push… how is anything going to change?

Stigma has to end.

Where is the love for diabetes?

Fuller House Misinfroms Viewes With a Joke About Juvenile Diabetes

Fuller House Misinforms Viewers With a Joke About Juvenile Diabetes

(Courtesy of Netflix)

Last week season 2 of Fuller House (sequel to the original Full House) hit Netflix. A popular sitcom that many have grown up with, watched, or have heard of.

As soon as the season was released on Netflix, many of those in the diabetes community shared their thoughts of disappointment. About a comment that was made in a Halloween episode referencing “Juvenile Diabetes“.

The scene is of one of the child’s friends saying how “uncool” the Fuller House was for giving out raisins instead of candy, and for handing out Juvenile Diabetes pamphlets.

While the comment is used for comedy as a punchline; it’s a misconception that sugar causes diabetes and it feeds into the stigma many live with everyday. Juvenile Diabetes also known as (Type 1 Diabetes) is an autoimmune disease and can cause serious complications or death if not properly treated.

Sugar will NOT cause “Juvenile Diabetes”.

Childhood obesity is a real issue and raises the risk of developing Type 2 Diabetes, but there is absolutely no link between obesity and Juvenile Diabetes or (Type 1 Diabetes).

Having such a lovable and relatable cast, it’s important for these influencers to understand the impact that is made. Stating that diabetes is linked to sugar and unhealthy food gives the assumption or notion that if you eat healthy you will never get diabetes. Which is very untrue!

The joke isn’t ideal for people living with diabetes or their loved ones. But it’s an optimum opportunity to educate and to set the record straight.

For just educating one person, could make a world of difference.

Letter To The Man That Wasn’t There For My Diabetes

I sometimes wish you would call me and ask how my diabetes is doing or if everything is going okay.

Just for a moment; acknowledge my diabetes.

It doesn’t define me but it’s such a huge part of my life and the journey I set out on everyday.

The journey you never joined me on.

I can’t imagine how you felt hearing the news that your daughter was diagnosed with Type 1 Diabetes, an incurable disease.

Thinking to yourself — why me, right?

I asked myself that question too.

But now I ask why couldn’t you ever accept or embrace it?

I needed to hear from you that “everything is going to be okay”.

But I never did and probably never will.

You never had to see me on the floor unconscious, or in a hospital bed with DKA, or up all night crying and praying that this would all go away.

You had it easy.

I thought you were doing me a kind favor by ignoring it and thinking that I had this all under control.

But this disease is hard, it’s real, it sucks, and honestly I feel like I’m just winging it.

I needed you in my corner, cheering me on.

But you were nowhere to be found.

I felt like damaged goods; I wasn’t “perfect” in your eyes anymore.

Diabetes was too much for you to handle.

I get it, I do.

Sometimes this burden feels like it’s too much for me.

But I can’t quit.

Now that I’m doing good, it may seem like I’m winning.

But I haven’t won yet.

It’s not fair to get to see me at my best, but not at my worst.

This is not how it works!

When I put my boxing gloves on, you should have put a pair on too and fought right alongside of me.

But you didn’t.

You chose to tap out.

This isn’t me being angry or resentful. This is just me confidently saying “I’m going to be okay”.

I forgive you.

I don’t need validation or approval.

I got this.

I found myself, and my voice.

I found a whole community that has my back.

I have a beautiful family that is there for me every step of the way.

With all my weaknesses, strengths, victories, and failures… I’ve made it thus far.

I’m proud of who I’ve become, and I’m never going to quit.