Monday, December 19, 2005

Yeah, that would be a big fucking NO!

This post may offend or piss off some of you, but it's how I feel on the subject.

I stumbled upon the Diabetes TalkFest blog today after reading about it in Lemonade Life .

The question is: If, at the time of diagnosis, you could have chosen, would you have chosen diabetes or not?

I was stunned to read that most of the people with D would have chosen it. Stunned? I was fucking gobsmacked. Why?? Why would you choose that??! It seems so selfish.

Every fibre of my being shrieks in disgust and disbelief. Ask your parents what they would have chosen for you. Ask yourselves if you want your kids to have this fucking disease. Ask yourself if you want to go into your child’s room every fucking morning, wondering if they’re going to be alive. Ask yourself if you want to obsess about where your child is and what her blood sugar is and if she has glucose tablets and if someone is with her because what if she passes out on the two-block walk home from her friend’s house? What if no one finds her for an hour? What if, what if, what if?

Watching my daughter worry that she won’t be accepted by her friends, watching her learn to check her own blood sugar when she was five, learning to give herself an injection when she was eight, not letting her sleep at anyone else’s house until this year, when she was eleven, because no one was willing to get up in the middle of the night and check her.

Years of doctors appointments and new regimens and monitoring and worrying and crying. The crying never stops. The worrying never stops.

Yes, I have made some wonderful friends, in real life and online, because of diabetes. I’d give every last one of them up in a heartbeat if it meant my daughter could have lived her life without this disease. I would give up my own life to let my daughter live her life without diabetes.

I hate this disease with a passion and I bust my ass to make sure that Olivia is as healthy and happy as possible. I also don’t let her see how much I fret about her and how I worry about what diabetes is doing to her body. For the most part, she’s a well-adjusted, funny, happy young lady who doesn’t worry too much about diabetes. But a life without it? Abso-fucking-lutely.

22 comments:

Ellen said...

A M E N!

Erica said...

I couldn't agree more. I wouldn't wish it on anyone and I'd be more than happy to decline it the day they were handing out diseases.

Nicole P said...

I actually think it's a loaded and wholly unfair question.

The thing is -- we don't get a choice. If we did, all of our lives would be beautiful and perfect -- free of disease and heartache and misery... But we'd also be free of the stories and the character that come along with all of those things.

I answered the question with an "I don't know..." Reasoning that the challenges I might get on the diabetes-free road could be worse than the ones I know now.

Of course, if I were guaranteed a deadly disease-free other road, then I’d pick that road in a heartbeat — with the hope that I’d have the same resolve to face the non-disease related challenges that were sure to face me along my way.

Anonymous said...

Those who would choose not to change their diagnosis if given the chance are in essence saying that Diabetes has defined who they are. Sad.

julia said...

Well said, Nicole.

April said...

I cannot even begin to understand the pain and despair that must come with this disease, and why someone would choose to have it - if it was an option.

My heart goes out to those of you who are suffering with it, because it must be such a devastating drill, day after day.

d double e said...

Julia-
Come here you! I've got a big hug waiting for you in D.C.

I can only wonder how horrible I'd feel if, in 20 years, Bailey said to me, "I'd choose diabetes."

I know that its her life and by then, she will be taking care of herself....

I'm not the diabetic, so I don't think I have 100 percent the right perspective, but I do say, "Amen" as well.

Kerri. said...

I am the diabetic.

And I'm not a miserable simp who hates her life and wallows around in a mucky pool of self pity, rebelling against the disease. I enjoy my life tremendously. And I enjoy the person I have become.

However, as I've stated on Gina's blog and as I've been quoted in Allison's blog, I would not choose this disease.

That's just my honest answer. I can't give any more than that.

julia said...

I didn't think you were a miserable simp, Kerri. I hope I didn't give that impression, or that I'm wallowing in self-pity, because I'm not. I'm occassionally furious about this disease, but most days, we just do our thing. It's only on here and on the parent's list that I let my real feelings and emotions run riot.


I do think I'm going to turn off anonymous comments, though. It's too easy for someone to post something hateful and hide behind the anonymity.

Sandra Miller said...

Julia, I am right there with you. If given the choice, there is no way in hell I'd choose this path for my son.

Period.

This is the easiest question in the world for the parent of a diabetic.

But for the person with diabetes, maybe not as easy. Especially for those who have had the disease for a long time.

I suspect that some chose their life with diabetes because to say otherwise might imply that they regret the person they've become since diagnosis. That they wish to deny those life experiences that have become an essential part of themselves.

No, I don't believe that my son (nor anyone else) is defined by this fucking disease.

But it is a part of him.

Kerri. said...

Julia,

Definitely didn't think you thought I was a miserable simp. I was, instead, asserting the fact that I love my life, but I still wouldn't choose diabetes, regardless of how strong it may have made me.

I feel strange, being one of the only diabetics actually saying that I wouldn't pick the diabetic road. But it's the damn truth.

julia said...

Sandra,
I get what you're saying but I guess I don't understand why the D person would think they'd be less of a person without diabetes. Everything shapes who we are, be it something as complex as a chronic disease or as simple as needing glasses.

Urgh. I'm not explaining this well. There's always something that will shape who you are and just because you have a great life now, with D, doesn't mean you wouldn't also have had a great life without it. Does that make sense?

It's early and I haven't had any coffee yet.

Sandra Miller said...

Julia, you make perfect sense. I guess I'm just trying to understand...

I don't think that anyone believes that they wouldn't have had a great life without diabetes. Just different. Not the life they've already lived-- the one they know they've lived well.

And I think that if anyone thought that they'd be less of a person without diabetes, then none of those who chose their life with diabetes would want to be cured!

No one truly wants this disease, of that I am sure. But many wouldn't want to erase the life they've already lived.

This is just such an insane question, because no one has a choice in all of this.

And it's so ridiculous to be even talking like this because I don't have diabetes. I'll never have the perspective necessary to truly understand why anyone would choose one road over the other here.

And I'm tired. We had a horrible, horrible night that ended with a shot at 5am. So if I'm rambling out a response, sorry.

d double e said...

This dawned on me this morning: I tell both my kids all the time that I love them exacly how they are.

My mom told me that too, and I believed her. :)

But then, would taking away something.. anything... even a chronic disease, make you kind of forget who you are...

I love you because you're perfect. Even though you have glasses.

Something like that.

I dunno. Just still trying to figure it out.

Violet said...

Julia, if you can stomach it, peek at Gina's discussion again. The discussion has become more complex (that is, more people taking the "no thanks" stance) since you posted.

I'm one of them. I'll walk this road because it's the one I've found myself on. Yeah, I'll smell the frickin daisies along the way, too. But I'm not resigned.

ginacaps said...

Hi this is Gina from the Diabetestalkfest.com/blog i couldnt post under my blog because i am not a blogger.com member so i made this account...
------------------------
Maybe I am lying to myself when I say yes I would take the road, and maybe I am not, but, one thing i have noticed is that I have been diabetic for 5 long fucking years and it has taken me so long to even come to grips with it and if this is my fate this is my fate why should i change it, right? maybe its wrong, but its my answer. Everyone is entitled to their opinion on the question.

like i said in my blog post i dont know where i would be today i dont even know why i will be tomorrow, i have been given diabetes, i got hit by a car crossing the street, i have fallen a lot more times in the past years than I would have liked... but this is my life. maybe the question wasnt fair to ask because you just dont know where life will take you. we all are faced with problems and maybe the question is a fucked up one that noone ever thought about before, it makes you think. hey and maybe a year from now my answer to this will change to no way in hell but as for this week i chose the road.

Wil said...

Hey crew, wow. Gina really started something that spread across the blogoshpere like a wildfire!

I'm one of the "resigned" diabetics. I voted to stay the road I'm on.

When I told my Mom about this question and these posts she went through the roof (about my answer that is) and suggested someone better check my head as well as my A1C.

Like I've mentioned elsewere, I think that shows were the greater pain is. It must be harder to be a parent than a diabetic.

Intersting, however, that of the diabetics who kept the path; some were "newbies" like Gina and I, others were "lifers" like Allison.

To try to explain to the other parents, I guess it is Silver Lining Syndrome. We're not defined by the diabetes, but we've come to love some of the silver lining that has come with it. The pretty presents under the dead Christmas tree.

Most of us OC diabetics have a woderful cyber-family. The closeness of these other people on the road with us is a bond that should not be underestimated. I truly love some of these people, my online friends that I've never met.

I would not trade them.

Last point, the question also required us "knowing what we know now" or words to that effect. So the question asks us to sacfrice all we have gained to change the road....

Ellen said...

Somewhat off topic, but I'm at high risk for developing type 2. |(I wonder how many parents of children with diabetes, end up with a form of diabetes themselves. I have 2 friends who developed LADA and several who developed type 2 after their children were diagnosed with type 1.) My paternal grandmother died from the worst complications of type 2. My mother developed type 2 in her 60s. Some days/weeks I'm very careful about what I'm eating and try hard to prevent the post prandial spikes in bg. This is supposedly something I an "control". I suppose on the days/weeks/months I ignore my high risk factors (and postprandial bgs) and eat without thought to the consequences, I'm choosing to have type 2? This from a mom who said NO WAY would I choose type 1 diabetes for my son.

Deb, mom to Anthony (age 4 & D) said...

I agree Julia, I'd trade my life for Anthony to be cured of diabetes. I'd take D from him and have it myself if given the option. I'd trade all of my D&non-D friends (and my house, car and bank account) for a cure. I'd also decline it if given the option at dx, I wasn't though, so we just deal with it.

I think it will help build character but I also think something other than Diabetes could have done that. Something less horrible. Things have and will come along that will help shape and build his character, and mine. Diabetes alone will not affect who he is and who he will become.

Wil-maybe it is harder to be a parent of a diabetic than a diabetic, at times. I don't know, my son is 4 and I don't know how he feels about it. I also don't have Diabetes. It's really a non-issue for him right now, he's too compliant. He knows no other life, he's had this since he was 13 months old. I know it will be an issue, probably soon too, once he matures and understands some of what having diabetes means. Or, when a kid picks on him at school or leaves him out because he has D. Then I think it will be harder to be a diabetic than to be a mom of one. I guess it depends on the meaning of 'harder', emotionally, physically, mentally or a combination of some or all of those. I don't know why I am dissecting it, 'cause it just plain old sucks for everyone.

I just hope we do the best we can to raise him with what we've been given.

Kerri. said...
This comment has been removed by a blog administrator.
Kerri. said...

Julia, that was my deleted comment. Sorry!

(Didn't want you to wonder...)

Kerri.

Sarah said...

Quite late here and missed the original posts, but being a T1 (for close to 13 yrs now)....

UM HELL NO!!!

I'd give up everyone I've met because of this disease if thats what it took to rid me of this (and trust me when I say I've met WONDERFUL, LOVING people, my endo included).

To be free of this disease, and not worry that this will rob me of my ability to watch DD grow, yup, I'd give it all up....In less then a heartbeat.

I am not diabetes, my life is not defined by it. I don't hide it, and am happy to talk to anyone about it, but its not me and never will be.