Wednesday, March 08, 2006

Already Lost?

Spoiler alert: If you're looking for uplifting, this isn't the post...

Last week, I stumbled on a blog by a talented, intelligent writer.

A wife.

A mother of a child with a genetic syndrome.

A "tax-sucking civil servant leach" (her description, not mine).

A Canadian.

A woman who has had Type 1 diabetes for 13 years.

Though her blog has almost nothing to do with diabetes, I haven't been able to stop thinking about it. About her outlook on the disease:


That is the worst part of being diabetic, at least in the stage I'm in (what I sometimes refer to as "pre-disabled," since something like 90% of type 1s will eventually have complications). That you do everything right, you measure and say no and count and shoot and test and record, and it just doesn't work. That this "manageable" disease, this disease that can be "controlled," will not be controlled after all, no matter how hard you work. Like that woman I knew when I was pregnant, who despite excellent blood sugar control, still almost went blind while she was pregnant.

And on the effectiveness of an insulin pump:

At least having a pump is like having a slightly better weapon and a get-away car; I still know I'm going to lose someday, but hopefully a bit farther off and with less effort in the meantime.

But in some ways, I am already losing, and I know it.

I can't get this out of my head. I look at my son, and the thought that we've already lost.... yes, I know this is just one person's thoughts, but still.

Are we simply winning battles here, with no hope (short of a cure) of winning the war?

He's my child, and I cannot stop thinking about these words.



We can't be losing. We just can't.

21 comments:

Beanie Baby said...

I'm so sorry to have depressed you! (Found your link on my referral logs--hope you don't mind if I but in.)

Life is not that bleak most of the time, honestly. Diabetes is a lot of work and sometimes the work you put in is not rewarded--somethign I'm sure you've already figured out. But I have a good job with good pay, I'm married, I have a child, I'm planning to have another child, I have many many friends, I have a degree, I write, and so far my complications are minor and aesthetic. Life is good. It's not normal, and it would be better if I weren't diabetic, but life is good.

Now, when I think and write about diabetes, two things happen:

1. It gets depressing, because I honestly did think I would be cured by now and because it forces me to think of all the ways my life is different--things I don't normally consider because it's "just life."

2. I feel like I need to show the worst of it because the medical profession is so unendingly chipper about it. I hate thinking that most people think of type 1 diabetes as a non-disease because all they're heard all their lives is that "you can live a normal life." It is a serious illness (another thing I'm sure you've figured out!) and I want to be sure I get that message across.

HOpefully that fact that I almost never talk about it does show that it is not the most important thing in my life.

:( I am sorry.

Johnboy said...

Yes, it's a battle. No, we haven't already lost.

Science to improve the lives of diabetics and eventually solve it will continue.

We are in a race. We are in a competition. We are in a battle and we cannot back down. We cannot give up.

Marcus Grimm said...

Sandra,

I agree - that's a tough post to read, and I think it would depress the parent of a diabetic more than a diabetic. I've had diabetes 20 years and it doesn't bother me much at all (even though I'm currently fighting with the insurance company over a new pump!), but if my kids had it, I'd react differently.

Still - everyday I see people dealing with any number of things more difficult than diabetes.

When I was younger, I used to think that diabetes precluded me from anything else, as if diabetes were my death-destiny. It's not, though - and my ending could just as easily come by way of a train-wreck.

art-sweet said...

Sandra -

First of all, your son is beautiful. Extraordinary. Both his picture and the chess story, beautiful.

Second - I'm glad to see that Beanie commented here. When I read the bit that you quoted from her, my first thought was that it rang true for me. We go on, and we do the best that we can for the reasons that she identifies in her comment. We have families. We have jobs - stimulating sometimes, frustrating other times. We are loved and we love. And being here for that is worth all of the incredible effort of trying to manage this disease.

But I think it's important to recognize that perfect control is impossible. And that in spite of almost perfect control, crap happens. If you hold yourself and your son up to an impossible standard, failure and burnout seem inevitable. To me, saying that diabetes "will not be controlled after all, no matter how hard you work" is not pessimism, is not losing. It's recognizing the truth of our lives and not blaming ourselves for what we can't completely control.

That doesn't mean that we stop striving for a cure, that we don't explore the newest medical options. It just means that the you cut yourself some slack from the "if you're perfect nothing bad will happen to you" myth. And stick with the best weapons and the fastest getaway car so that you can make the most of the life that you have.

Tekakwitha said...

Sandra,

You've had some eloquent responses already, but I just wanted to post to let you know that I'm thinking about you today.

Penny said...

When I first read your post, I just wanted to break down and cry. Then, I read the comments and came to this conclusion.

None of us are promised tomorrow. My son, heaven forbid, may have complications down the road. But, if he wasn't diabetic, he could just as easily get cancer and die at the age of 30 or earlier. (That could still happen with diabetes)Some people exercise, eat right, and do everything they can to stay healthy, but they still may get cancer or some other terrible disease. I think the best way to look at this disease is one day at a time. Now, I'm not saying I always do that, but I try. What I'm trying to say is I try not to look to far down the road. Maybe there will be a cure. If there isn't I know that diabetes management will greatly increase. Lantus wasn't even around 6 years ago. Just think of what they might come out with in the next 6 years.

I do not think it is a losing battle. I think it's a battle just like all the people battling cancer, an abusive spouse, financial difficulties, depression (the list could go on and on)Some will win and some will loss, but the best you can do is put up a good fight.

Kelsey said...

That post is true... for everyone!

Take a person without diabetes, like yourself. They'll eat well, exercise, not smoke, take their vitamins, see the doctor, have regular screenings, and still die.

Isn't that just life, the reality we all face. Having diabetes may complicate the matter somewhat, but not all that much.

That kind of doomsday attitude is basically asking: why do anything if we're all going to die someday?

I think its been pretty well established that the members of the OC don't have that attitude about life. And we wouldn't, whether we had diabetes or not!

Rachel said...

Penny said it better than I could regarding type 1.

Dealing with type 2 this week has been difficult. I've been waiting for "them" to say that Kirby Puckett had (undiagnosed?) type 2. And I know his life was in turmoil the last several years.

I know I let my health go with work stress in the past and I worry that tomorrow, something will set me off again where I gain weight and head back to the triple threat of high blood sugars, high blood pressure, and high cholesterol. And end up paying for it at a young age.

Then I realized that anything really good or anything really bad could happen tomorrow. It doesn't have to be me regaining weight - anything can happen tomorrow.

Kerri. said...

I am a diabetic. And I am someone’s daughter. And what you’ve written resonates on both perspectives.

There are days when I feel overwhelmed by the responsibility of this disease and the chaos that could unfold in a few decades, months … minutes. It’s frightful to think about and it still makes my mother’s stomach ache. Diabetes is scary and so much “responsibility” is placed upon the diabetic themselves that a complication is almost viewed as a result of someone not taking care of themselves, which we all know to be untrue. You can follow every rule to perfection and still end up with issues. Or you can toss caution to the wind and be okay for years.

We just can’t tell.

But this ambiguity doesn’t chase me everywhere. Every literal low and high doesn’t ruin my day or my life. I’ve been on this earth for 27 years, 19 of them with diabetes. I have had the luxury of a loving family, a terrific education, loyal friends, and true love. My life is good. Very good. And if I end up with complications, I will be so sad, but my life will still be good. This is not our defining characteristic. This disease is just a part of the people we are.

Just a part.

You have to be the mother of a diabetic child. And he has to be the diabetic. And your lives will be full and gorgeous and inspiring, even if some days feel uncertain and frustrating. Life cannot be viewed as a “war.” This isn’t war. It’s just what we do. This is just what we have to do.

And you are doing a great job. You and Joseph. And all the other bloggers. And everyone else who does this every day. We are all doing a great job.

Come what may, our lives are blessed with so much. Every single day.

Sandra Miller said...

I debated about whether or not to post this. Because it is such a downer.

But then I found that I couldn't write about anything else.

You see, for a number of months now I've focused a great deal on day-to-day diabetes care. While at the same time, trying to make it possible for Joseph to just be a kid.

Thus, when I read Beanie's post, it was like a re-awakening of all those early fears I'd had surrounding this disease.

Frightening-- both because of the nature of those fears, and because of the realization that those feelings are always, always still there.

Just waiting for the right moment to take hold.

So I had to get these feelings out there. I just couldn't get on top of them alone.

And I knew that if I did post, you people would find the words I needed to hear.

Thank you.


And "Beanie,"

No need to apologize. You didn't depress me. I did that myself. I let myself focus on the quote I included in my post, without placing it in the context of everything else you wrote. Everything else you do, really.

Thanks for helping me realize this.

Scott K. Johnson said...

What more can I say that hasn't been said already?

For me, I really really struggle with the mental aspects of diabetes. It really bugs me much of the time, and I let it bug me more than it should most of the time.

But, I also feel that I am a stronger person because of the struggles I face on a daily basis. I don't have it all figured out, but I don't resign myself to failure and early death with a low quality of life either.

It may be hard to tell from my blog, but I think of myself as an optimist most of the time. Sure, I have my struggles, and I use my blog to vent about my frustrations, but no Sandra, we have not lost. Not by a long shot.

Shannon said...

I can't believe that we've already lost. With the care and management techniques that now exist, complications can drop dramatically.

When you hear of complications, you can't take for face value that the individual did all they could to care for themselves properly. How often did they check themselves? Did they guess at doses or did they take care to calculate how much insulin they needed based on glucose numbers or carb counts?

It takes approximately 15-20 years for complications to show if they do at all.

There are a number of PWD's here who blog who have had diabetes for more than 15 yrs with Zero complications. They have tight control over their management. Do any of them have complications? No, they don't.

Therefore, I believe that with effort in diabetes management, we can prevent or at least greatly decrease the severity of complications to the point where a good quality of life for PWD is preserved.

Megan said...

Everyone had their own issues. Would life be better if I didn't have diabetes? I don't think so. Why? Because something else would take it's place.

My sister doesn't have diabetes, but struggled to learn how to read, while I didn't get my first grade below an A till college.

My mom doesn't have diabetes, but struggles with depression.

My friend doesn't have diabetes, but just had long, hard foot surgery- and needs more.

Everyone has their thing. Is diabetes serious? Yes. Can it get depressing? Yes, but that's life, welcome to it.

Attitude is everything. Diabetes not normal? You can't change diabetes, so change your idea of normal.

Every good bs is a win for me. Everything I d o that I enjoy doing is a win. Every out of range bs is just a pit and something to learn from.

Jamie said...

Like Penny, when I read this post I just wanted to break down and cry. But, after reading what everyone has written (including beanie) I've snapped out of it.

I think everyone in here has said what I would have written. Yeah, it sucks big time, but lets not let this disease define who we are or who are children are.

We can keep on hoping for a cure - as I believe in my heart that in my childs life a cure will be found. I just can't think otherwise.

Jeff N. said...

I'm one of those longtime type 1s -- diagnosed in 1973, when I was 15. It's never been easy, but I've been pumping since 2001, have not always had good control, and have no major complications. I probably couldn't say that if I were 30 years older and diagnosed in 1943. The improvements in diabetes management since 1973 are miraculous.

Sandra, I'd bet that your beautiful son will have many more victories than defeats. I'd worry about him, too (I have two daughters, 16 and 11), but he's lucky to have your support and the resources available today.

Thanks for your blog. This is a nice group of people.

Beanie Baby said...

PHew!

Thanks. ;)

Tiffany said...

Wow, I am late on this one.
And WOW, Megan!! You stagger me with your insight; short, sweet and to the point:

"Attitude is everything. Diabetes not normal? You can't change diabetes, so change your idea of normal."

Sandra, to be quite frank, I'm sorry you had to read that, and without a specific counterpoint.

So, counterpoint time:
I'm not sure where this blogger got the statistic that "90% of Type 1 Diabetics will have complications". Publications (google it) will show you that statistics state that approximately 40% of Diabetics will develop complications due to the disease. Yep, I know, cold comfort.

But I'm not a statistic. Nor is Megan, nor is beanie baby.

Joseph isn't a statistic either. He's got the mom to prove it.

And there is that wonderful DCCT that proves that improved blood glucose control decreases the risk of complications by up to 80%.

That's pretty worth the fight, if you ask me.

Sometimes my diabetes and I fight for the reigns of control. Sometimes we live in perfect symbiosis. War and peace.

As my mother would say "That's life, sweetheart".

Yes, someday, maybe tomorrow, next week, next month, years from now...my practically perfect control may be temporarily invalidated by this insidious disease. I might go blind. I might lose a limb. I might have to go on dialysis.

But I will Never go quietly into that good night. I will be able to look back on my life and say "I never did my best; I never accepted just my best. I fought this battle with everything I had and even some I didn't think I had, and I never gave up".

I will control the controllables and accept the uncontrollables. No matter what happens.

Because that's life. And I'm damn happy I have it.

And that, to me, is winning.

Sandra Miller said...

Tiffany,

I think I owe you an answer to an earlier question-- and your words here, along with so many others you've written, have made it easy for me...

Yup, I would love to adopt a girl in her mid-twenties.

And yes, Joseph would be totally all over having a big sister :-)

Thanks.

Beanie Baby said...

Tiffany:

From the Canadian diabetes association (diabetes.ca):

"The single most important risk factor is the length of time you've had diabetes. Several large studies have shown that type 1 patients usually don't develop retinopathy until at least five years after the onset of the disease. After 15 years with diabetes, however, 98 percent of patients demonstrate some retinopathy."

Now how exactly is it that 98% of type 1s will end up with retinopathy after 15 years, yet you say that only 40% will develop complications? Did you break it down into type 1s and type 2s? Type 2s don't develop as many. Or did you count only disabling problems?

You know, this debate has been interesting to read, but quite frankly the responses of some people here make me quite happy to be excluded from "The" Diabetes OC. Anyone who would read two quotes from my blog that (as Sandra said) were out of context and use them to justify sweeping generalizations about myself and my attitude towards life is not worth getting to know.

Jeff N. said...

beanie baby, I'm not an authority, but I think the thing about retinopathy is that some background retinopathy (not so serious) is almost inevitable (98% sounds right) but proliferative retinopathy (serious) is not.

I've had some background retinopathy for many years, but it has never advanced to becoming a problem. My eye doctors think my eyes are clean, after 32+ years of type 1.

That 98% statistic, without context, is scary and depressing. But I don't think it's that bad.

tiffany said...

Sandra,

When can I move in?! ;) I've always wanted a little brother...

beanie baby;

Let me speak for everyone when I say that nobody in the O.C. is making generalizations toward your life; in fact, I've read nothing - nor does my post own imply anything - that implies negative opinions toward your attitude and your life.

What we are doing here is offering support. Using our own life experiences to ease the fears of a peer. Addressing Sandra's concerns, not yours.

I am not interested in becoming embroiled in an argument, so the only thing I can say to you is this:

You've opened your opinions to the general public, and you've got to expect that reader views toward your opinion will not all be sunshine and rainbows. What you say will affect others, and may also generate responses that you don't like. You choose what to do with that.

As for the statistics thing;

You yourself are just as guilty of making generalized, sweeping statements. By that token, you are as culpable as you propose us to be.

I do not want to see Sandra's post degenerate into an argument between you and I (Sandra, delete this comment if you feel so inclined), so I am going to refrain from commenting any further or defending my own comments. If you want to continue this discussion off of Sandra's blog, you are welcome to email me.