From a Whisper to a Roar: A Promise to Myself

This year I reach my quarter century with Type 1 Diabetes.

I'm twenty-eight years old.

Diabetes isn't simply a part of my life. It is my life. I don't remember any other way.

When I was three years old, I don't suppose I even had a grasp of the concept of 'forever'. Or 'for life'. Or, more simply, that this would never go away. That everywhere I went in my life diabetes would be along for the ride. That every achievement I made would be made with diabetes in the background. But I've known for a long time now that this is the reality.

I've never been the kind of person to spend a lot of time thinking about, or hoping for, a cure.

Of course I want a cure, but it is simply something I don't allow myself to dwell upon. Instead I carry just the tiniest nugget of hope, locked deep in my heart. I allow myself only the most occasional indulgence, opening up that place and allowing it to spread, to flood through me until I can almost taste it. But I can't afford to live a dream with the beast of diabetes always my back.  The reality of blood glucose tests, balancing food, exercise and stress against illness. I don't have time to to constantly dream of a maybe.

I'd destroy myself if I did. Which is why I shut it away deeply.

The one wish I've always held more prominently is a simpler one.

From the first moment that I realised that I knew far more about diabetes than any of the well meaning people who liked to offer unsolicited advice, and even than the so-called medical specialists who had no idea what it felt like to wake up in a middle of the light low, shaking, drenched in sweat and afraid that a dearly loved teddy bear had grown larger and come alive, I've had a fairly simple dream.

I want people who don't live with diabetes, who aren't personally affected by it to be able to "get it". I hope for people to know the truth of this condition, not what the media feeds them.

I want them to know that nobody brings this upon themselves. It isn't caused by eating too much sugar or being overweight.

I want them to know what it feels like to keep this with you every day. I want them to know that injections, finger pricks and wearing a pump aren't the hard parts. It's the constant unpredictability, juggling so many different factors in a quest to stay in control. It's the way a low or a high makes me feel.

I want them to know that highs and lows happen and that it isn't usually because I "did something wrong." I want them to know that diabetes doesn't have to stop me eating what I want, or doing what I want, but sometimes in a particular situation it will: it isn't an excuse.

I want them to know what it feels like to really feel fear. To fear lows that creep stealthily over like a shadow while sleeping. To fear the long term complications, including blindness, heart disease, kidney failure, neuropathy. These are all things that have the potenial to end life as I know it.

I want them to realise that I do this every waking minute of every day. There isn't much they're going to be able to tell me. There are no miracle cures. I want support in my efforts to live healthily ad take care of myself, but I don't want unsolicited advice from people who hardly know me.

Writing this here, though, I'm preaching to the converted, and that is something that is easy to do. Almost everyone who comes here is already affected by diabetes and already knows these things.

Somewhere in the last twenty five years I've lost the will to keep shouting the same message over and over to the people who don't have a clue, to see it going straight in to one ear before drifting lazily back out of the other.

My simple wish, once a raging fire, has withered to a tiny ember, kept locked tighter, deeper even than my wish for a cure. All that escapes these days is the occasional whisper of smoke.

But today, all around the blogosphere, people with Type 1 diabetes are raising their voices to raise awareness of Type 1 Diabetes, as distinct from its more common cousin, Type 2.

I may not be able to make much difference by writing here, but today, I've made myself a promise. Over the next week I'll begin to work on turning those whispers in to shouts and roars.

Maybe if I can help just one new person to "get it", that will be enough to reignite the flame of hope.

Comments

[Colleen]

This is thoughtful and perfect. Hope you find your voice!

[in search of balance]

This is a great post. All those smaller things, that are too often misunderstood or secret, are what make me feel so understood here in the OC. I hope your post helps a few people outside of the OC understand those things too.

[k2]

SHOUT IT LOAD AND SHOUT IT PROUD.
Great Job!
k2

[k2]

OK - Take 2 & note to self, learn to spell!

SHOUT IT LOUD AND SHOUT IT PROUD.
Great Job!
k2

[Johnboy]

Awesome post, Caro. I completely get it.

[Sandra Miller]

So glad I didn't miss this post.

This was perfect, Caro.

[Scott K. Johnson]

Great post Caro.

[jj]

I think you just did tell the world. What a great post.

[Brent West]

I am 28 years old, and I've had diabetes for 17 years now.
I feel the way you do, and I cringe when I talk to someone who "knows a so-and-so" with diabetes. All the people with their suggestions and miracle herbs, all the "Medical experts" who have less understanding of diabtetes than I carry around in my (sore) pinky finger.
I have one point which I find to be a disturbing trend. Every one seems to know someone with diabetes, but they usually don't, they know someone who has abused their body with high fructose corn syrup and a sedentary life. I'm fed up with being lumped in with all the so-called diabetics who need to put down their colas, get off their fat lazy bums and take a walk.
I propose that Type I and Type II get different names. I think type I should get to keep diabetes, and Type II should be called "Stupidity-induced chronic hyperglycemia"

[bb]

I live in Milwaukee, Wisconsin (USA), and have had diabetes for nearly 20 years. I just wanted to leave a note here to say this post was able to put into words what I've wanted to explain to people for a LONG time. I've never been a "model" diabetic - I've struggled keeping control as long as I can remember. I've been on an insulin pump for almost 12 years. My problem is I know what I need to do, I just struggle to get myself to do it. The pump has been a godsend, but I think it just helps me to manage being lazy with my care (if that makes sense). Anyway, I'm rambling now, but THANK YOU again for this post. I just wanted you to know that your words are touching people around the globe :)

[Penny]

Tag! You're it!!

Here are the rules:

Once you’ve been tagged, you have to write a blog with 10 weird, random, facts, habits or goals about yourself. At the end, choose 6 people to be tagged, list their names & why you tagged them. Don’t forget to leave them a comment saying “You’re it!” & to go read your blog. You cannot tag the person that tagged you, so since you’re not allowed to tag me back; let me know when you are done so I can go read YOUR weird, random, facts, habits and goals. Have fun!

[Bob@JOD]

Amen brother.....I absolutely know where you are coming from. I enjoyed you writings. Peace, Bob

I am glad to link if you would like to look around my site ...let me know and we can link back and forth. Thanks

[Ale]

I love what you wrote, I've noticed so many times in my short 2 years and a half of diabetes people, not knowing what diabetes 1 is, esxpressing judgement about it, like it was something i caused to myself, eating badly and so on...
There is so much that is not known of diabetes 1, and I can read it in the eyes of people when i told them I've got it..."diabetes? but you're so young!"
thanks for what you wrote. Ale

[Belinda Shale]

Hi

We have just launched a test version of a new site which you might find of interest

Please go to

http://www.icarecafe.com/?page_id=4&cat_id=2&thread_id=1&post_type=5&group_id=2

Thanks

Belinda