Diabetes Books... "cheerleading"?

[Ronin1966]

Many diabetes books which I posess (and have encountered) over the decades by in large were published by pretty specific diabetes groups/associations. As such, the tone of those books for my taste was what I can only call "very superficial" , artifical at best? "Diabetes Cheerleading 101" kinds of stuff.

I'm curious whether other diabetics, their parents, families have found this to be their experience as well? I don't need the blindness, amputation stories but neither do I stomach the self-actualization "rah-rah" as being remotely helpful... for anything but kindling! :eek:

Are there published materials about diabetes you've read or heard of which are not in that "cheerleading" category? That tone truly offends me... but I'm looking for some replacement books for my diabetes pile. So I thought I would ask...

Anybody have one (diabetes book) that's not "cheerleading" but instead a thoughtful, interesting read?

[StillMamamia]

Ummm, cheerleading books:confused: Not sure what you mean by that.

These are my choice for general info on T1 D:

"Type 1 Diabetes", by Dr. Ragnar Hanas (like THE encyclopedia to T1 D - a must have, IMO)

"Think Like a Pancreas", by Gary Scheiner

"Using Insulin", by John Walsh

"Pumping Insulin", by John Walsh



These one look like pretty good reading, but I haven't gotten around to them yet:

"Diabetes Through the Looking Glass: A Book for Parents of Children with Diabetes", by Rachel Besser (she's a UK pediatrician with T1 D), I think)

"50 Secrets of the Longest Living People with Diabetes", by Sheri R. Colberg & Steven V. Edelman


Look through this forum for other books.

[HurleyDan]

Many diabetes books which I posess (and have encountered) over the decades by in large were published by pretty specific diabetes groups/associations. As such, the tone of those books for my taste was what I can only call "very superficial" , artifical at best? "Diabetes Cheerleading 101" kinds of stuff.

I'm curious whether other diabetics, their parents, families have found this to be their experience as well? I don't need the blindness, amputation stories but neither do I stomach the self-actualization "rah-rah" as being remotely helpful... for anything but kindling! :eek:

Are their published materials about diabetes you've read or heard of which are not in that "cheerleading" category? That tone truly offends me... but I'm looking for some replacement books for my diabetes pile. So I thought I would ask...

Anybody have one (diabetes book) that's not "cheerleading" but instead a thoughtful, interesting read?

Ronin, I couldn't agree more. I have had type 1 for 34 years, and I can't tell you how many "inspirational" stories I read over the years in the American Diabetes Association's magazine, Forecast. It especially made me batty when celebrities would give these phony accounts of how great they were managing their disease. As John Lennon once said, "Just give me the truth."

My new book, Diabetes Rising (http://www.amazon.com/Diabetes-Rising-Disease-Became-Pandemic/dp/1607144581/ref=sr_1_1?ie=UTF8&s=books&qid=1266948213&sr=1-1), is plain journalism, describing why type 1 and type 2 are both increasing, and innovative new research into the artificial pancreas, biological strategies to cure it, and public health efforts at preventing both of these diseases in the first place.

I've always felt that writers do a disservice to people, especially to us people with diabetes, when they think we need to be told pretty half-truths. Reality might be tough but it's all we got. --Dan

[LantusFiend]

I totally know what you mean about inspirational diabetes stories. Usually I think they're pretty stupid.

I've read two books about diabetics who had pancreas transplants. One is The Gift of Life by Alfred Beckler, 1983. The other is Showdown with Diabetes by Deb Butterfield, 1999.

I recommend two books about diabetes in general: Cheating Destiny by James Hirsch, 2006, and Bittersweet by Chris Feudtner, 2003. The second one is the better of the two, IMHO.



I've actually met Beth Finke, who wrote Long Time No See about being blind, from diabetes. In fact, I met her 10 months before my diagnosis, and I met up with her again about four months after my diagnosis.
I've also read a book or two about diabetes complications, but can't remember now what their titles were.
Some of the autobiographies of people with diabetes that I've read really piss me off because the authors talk about doing really stupid things (like Ron Santo refused to take insulin for two years after his dx at age 18, until DKA forced him to, or Mary Tyler Moore ate a whole box of donuts without bolusing) and then talk the "poor me" talk. At the opposite end, Beth Finke blames her blindness on her eating ice cream, etc as a teenager. I dunno.

[Ronin1966]

Hello Paula:

I will gladly try again...

Motivational cotton-candy, emotional cheerleading is obscenely simplistic, deliberately misleading and purposefully artificial (assuming the best motivations/intentions) for presenting Type 1 Diabetes in that deliberately false manner.

Cheerleading is the false euphoria, the dopey "GO TEAM" aspect which the large diabetes publishers/associations apparently have as the sole template for the tone of their publications!!!

That type of presentation, that rah-rah... "you can do it..." is extremely offensive and simplistic. I am seeking a more truthful explaination of the diabetes experience. I've gone through my piles of diabetes books and seek something more meaty than the superficial slush I've observed published for decades.

Toward that end, I am asking what book recommendations my experienced diabetic peers possess?

Better? :)

[StillMamamia]

Better, with a touch of condescending.:rolleyes:

Good luck with your search.

[StillMamamia]

I've always felt that writers do a disservice to people, especially to us people with diabetes, when they think we need to be told pretty half-truths. Reality might be tough but it's all we got. --Dan


So all the info about what can happen to your body if you have diabetes and, especially, the possibility of serious complications if you don't do your best to manage it, is simply not enough "reality"?

I think you're mixing beans with apples here. But I think I can safely say those living with this disease have a pretty good grasp of what the "reality" is.

The human spirit (in the general sense) at times needs to be uplifted and to have hope. Hence the "cheerleading" types of literature come in handy. It is what some people need to keep going. Like a faith type of effect.

For others, the harsh reality must stare at them in the face. And they are entitled to that.

I'm a mix of both. I know the reality of things, but will not allow the "pain" of that to destroy the innocence of a 6 year old.

[LantusFiend]

Edited: This rant was originally aimed at Paula, but I don't think she deserves it, so I am taking her name off of my rant. This was a long time coming.

With all due respect, you are a parent. When the cheerleading message goes wrong, you're not the one who bears the brunt of the expectation that we will overcome our diabetes.
In the disability culture, we have a name for the cheerleading portrayals of people with disabilities- supercrips. It is not a compliment. When disabilities are portrayed as something you can and should overcome, the societal intolerance- and the internalized intolerance- for not "overcoming" disability can be excruciating.

Sometimes some people need to believe that can prevent bad things from happening. That's why people want to believe that our diabetes was caused by us eating too much sugar.
Sometimes parents need to believe that their children will be okay. Fine. It doesn't hurt if that's what they believe, I don't think- and it certainly allows parents to be better parents if they are not consumed by anxiety.

I do not believe that diabetes control is a matter of effort; as a consequence, I do not believe that effort is either necessary nor sufficient to prevent diabetes complications or day to day problems, though I'm sure it helps.
I also do not believe that anybody can or should say that I will be able to live a normal life with diabetes, because that puts the blame on me if my life with diabetes is anything but normal, and let me tell you: My life with diabetes has not been normal! Diabetes has stopped me from doing things I would have liked to do, and it is not my fault.
Also, I have diabetes complications and they are not my fault either.

When parents on these boards say how diabetes care has improved so much and people with complications must have had years of bad control, I sit on my hands and I say nothing, because perhaps that is what you need to believe. But I do not believe it. And I do not want to read it.
As a diabetic adult, I want to read about life with diabetes that respects, if not reflects, my own experiences. I don't want to read about people whose complications were because they "didn't take control" of their diabetes. I don't want to read about people who "overcame" their diabetes to be athletes or dancers or whatever.
I am afraid of what my future holds, and I do not want to hear that I am foolish for my fears. I don't want false promises.

In Body, Remember, Kenny Fries notes that he has a bone disorder of the legs and his parents would tell him he could do anything, he could even be a basketball player, and from that he learned that his parents' take on his disability was not to be trusted. I feel like that a lot.

[StillMamamia]

I respect your pov, Jonah, and understand it, as much as an "outsider" to this disease can understand.

You're absolutely right. I am just a parent. But I can't be anything else right now, with having a very young kid, kwim? It is my duty to take care of him. It is my duty to give him self-confidence and to "cheer" him on. I am not only responsible for his psyche, I am responsible for his body, his physical health, albeit in my own humanly limited ways. I can not do anything further than this.

When he is older, he will handle things on his own.

As far as the cheerleading issue, this is not how I view it's purpose. And that's where you are right. I am just a parent. I am not cheering my boy on because he must overcome his "disability". I cheer him on because he is my son.

And it's not because I need to believe things are so much better now, and that the future may be bright. It is because how I see things may impact how my son sees things, so I do make an effort to stay positive when possible.

But, I can tell you I think about what if one day my son won't see. What if his health just craps out on him because of D. What if he dies before me. What if. What if.

Then I remember what another mom told me once. She said she spent so much time wondering about the what ifs, that she missed enjoying the present with her kid.

For that, I will keep a "cheerleading" type of attitude. MY type of cheerleading, not the type you so well explained, and which I understand now.

I can't walk in your shoes. That is obvious.

Thanks for taking the time to explain things to me. I have learned from your post.


ETA - LOL, no need to take my name off your post. You addressed my post. It's normal. I didn't take it personally.

[Tricia22]

About Jonah's post... well... I have had diabetes for almost 15 and a half years now. My docs have always said my control was good, as good as you can really expect growing up. My latest A1C was 6.3 YET... I have complications already as well... at 23 years old. I had 2 aunts who passed away from complications of diabetes at 52 and 47 years old. The one who passed away at 52 did EVERYTHING humanly possible to take care of herself, and still died young. The one who passed away at 47 was in denial about her diabetes from day 1, developed few complications, many fewer than my other aunt, and passed away at 47. You NEVER know what will happen. I can have THE BEST control possible according to the ADA, Assoc. of CDEs, endocrniologists, etc. and still die young from diabetes. Or, I can have horrible control, and live for 80-some years with the disease. You just never know, and it sucks. It's hard. I don't want the cheerleading "everything will be ok" kind of stuff either because frankly, it might NOT be ok in the end. At the same time though, I do want a pat on the back for doing whatever I can do to have good control and lessen (though you can never eliminate) the chances of complications ever once in a while. It is extremely hard work, it can be exhausting, and I HATE it all the time, but I do what I have to, hope for the best, hope that the bad things stay away, and live my life... some days in serious fear about the future and what it may hold, and other days I am able to focus more on the GREAT recent A1C of 6.3 and other such small victories.

[Brenda]

I'm not quite sure what you are seeking, but I will suggest a book that I read several years ago: Needles: A Memoir of Growing Up With Diabetes by Andie Dominick. I think it is available through amazon.com.

[Ronin1966]

Hello StillMamamia;

<<Better, with a touch of condescending.

If that honestly is your perception (???), I have done a truly poor job explaining my perspective.

I am not looking for "Diabetes by Dante" but nor can I stomach "Diabetes" by Walt Disney. Too many from my perspective seem done with that latter ~Disney~ tone...

I seek better reading materials... any others come to mind ?

[StillMamamia]

Hello StillMamamia;

<<Better, with a touch of condescending.

If that honestly is your perception (???), I have done a truly poor job explaining my perspective.

I am not looking for "Diabetes by Dante" but nor can I stomach "Diabetes" by Walt Disney. Too many from my perspective seem done with that latter ~Disney~ tone...

I seek better reading materials... any others come to mind ?

Stuart


No. You did explain your perspective very well.
I was in a crappy mood that day. I should have come back and apologize or reworded my post. It was uncalled for and rude.

My sincere (albeit belated) apologies, Stuart.

[CAGrandma]

You NEVER know what will happen. I can have THE BEST control possible according to the ADA, Assoc. of CDEs, endocrniologists, etc. and still die young from diabetes. Or, I can have horrible control, and live for 80-some years with the disease. You just never know, and it sucks. It's hard. I don't want the cheerleading "everything will be ok" kind of stuff either because frankly, it might NOT be ok in the end. At the same time though, I do want a pat on the back for doing whatever I can do to have good control and lessen (though you can never eliminate) the chances of complications ever once in a while. It is extremely hard work, it can be exhausting, and I HATE it all the time, but I do what I have to, hope for the best, hope that the bad things stay away, and live my life... some days in serious fear about the future and what it may hold, and other days I am able to focus more on the GREAT recent A1C of 6.3 and other such small victories.
I think your attitude is a realistic one. I spent 20 years teaching childbirth classes at a local hospital and every class series we would discuss the possibility of what hospitals like to refer to as "negative outcomes". Basically it was the possibility that a baby would be born with mild to serious birth defects or would be born deceased or die right after birth. Totally grim topics. There are things that a pregnant woman can do to decrease the risk of these outcomes and increase the odds of having a healthy baby - and we want women to do this. But it is important to recognize that there are women who do absolutely everything right and have problems - and there are women who smoke, drink and do drugs during pregnancy and still have healthy babies. One of the main differences is that those who try to maximize the odds in favor of health know that they tried their best and did everything they could. If things go wrong there will be no basis for any guilt to add to their sorrow. No "Gee, if only I had tried ...."
People who have diabetes and try to manage it as best they can may have complications - but they shouldn't have guilt or regrets.

[kimmcannally]

I'm always looking for informative books. No cheerleading, no "you are gonna die young no matter what you do". Just information in how to manage this disease for my son. I like Pumping Insulin and Think Like a Pancreas. They are just information. :)

[Ronin1966]

Hello Jonus:

<<I do not believe that diabetes control is a matter of effort; as a consequence, I do not believe that effort is either necessary nor sufficient to prevent diabetes complications or day to day problems, .

I accept your postion and acknowledge its wisdom. But given that position, from where do you find hope?

Has anybody written ~something diabetic~ that made you take a second look? Anything that made you laugh aloud, from joy and amusement?

[LantusFiend]

Has anybody written anything something diabetic that made me laugh out loud from joy and amusement?
Yes, that's what these forums are for!
Um, but also that's part of why I collect diabetes songs.
I'm not sure that there are any diabetes books out there where I felt that the authors really articulated my feelings about diabetes, although there is one about diabetes history that I liked a lot: Bittersweet.

As for hope, I think I place my hopes more on the human spirit than on diabetes management; I hope that life is good no matter what comes my way and that I'll find ways to do better than cope even if I get lots of complications. I'm involved in the disability community (and I was pre-D) so I have lots of examples of how people deal with disabilities that can be complications, including how it can be a struggle but also how life goes on.

[MikailasMom]

Jonah-

I stumbled across this post looking for a good book to read to help my dd cope with this nasty disease. You have truely opened my mind to the possibility that I may be setting her up for failure instead of simply stating the plain facts. I just, as a parent, dont know how to tell her that no matter how hard we work to keep her healthy and "in range" she may, despite best efforts, loose her sight or a leg to the flippin disease. I completely agree that complete "cheerleading" is not the answer! Im just at a loss as to how to balance it with facts with out making her think "why bother then?" or scaring her.

Do you have any suggestions?

Thanks Jonah, I truely appreciate your insight into this world, which I cannot experience first hand :)

[LantusFiend]

To motivate a tween, you can say that high and low blood sugars will impact how much energy she has to do other stuff right now. Being high even when you don't feel it slows you down, and she probably knows that from experience, although sometimes the difference is only obvious when there's a big change in blood sugar control. Day to day right now function is a good enough reason to try to manage diabetes.
Encouraging a disability positive perspective is something I would want to see for every person on the planet. Nobody is immune to becoming disabled.

The question of how to talk about complications with a ten year old is not something I can address from being a ten year old diabetic; I was seventeen and had already met two people who'd gone blind from diabetes when I was diagnosed. One of them had begun to lose her sight at the age of 19.
What I think, though, is that you want to give your daughter the impression that you're open to talking about these things, and take it at her speed. You can certainly downplay the risk of complications if you want to without harming your daughter- but not by saying that complications only happen to people who don't take care of themselves. You CAN say:
-That the reason she gets an eye exam is because some people with diabetes get eye disease, and we want to know about it because if we catch within a few years of it developing, we can treat it. That is the truth. You don't even need to present it as different from the screenings for celiac or thyroid disease (which are not complications).
-That not everybody with diabetes gets complications, and that it is much more common to have mild complications (non proliferative retinopathy, microalbuminuria, peripheral neuropathy) than severe ones (detached retinas, kidney failure, amputation).
-You do not have to list for her all the complications you can think of, unless she explicitly asks you to.
-You can present life with complications in a non-dramatic fashion.
-If you do talk about diabetes control and its impact on complications, you can mention that good control SLOWS DOWN complications in individuals even when it can't prevent them.
-When she's a teenager, the way that smoking contributes to risk of severe complications might be worth mentioning- but not repeatedly.
-Complications should NEVER EVER be presented as a threat (For a teenager, "if you don't take better care of yourself you'll have a heart attack by age thirty" = invitation to figure out another way to die by age thirty).

There is also nothing wrong in presenting people with diabetes who are successful in the way that ethnic groups are proud of people of their ethnicity who are famous. You can point out celebrities with diabetes as part of helping her develop a positive identity as a diabetic (or person with diabetes, whichever you and she prefer). But in that same vein, you could point out celebrities who have children with diabetes or whatever- you should merely be saying ,oh look, we have a connection to famous people.
You can also share diabetes funnies (there's a list on the main page of CWD of "Parent Humor" and "Humorous Tidbits") as appropriate.
I think my favorite inspirational diabetes story is that of Victor and Eva Saxl. She might like that.

Books for tweens about diabetes are mostly about kids with diabetes and therefore the worst complications they show are DKA and hypoglycemia, nothing long term (I can think of one exception but it's for teens). Books like the Babysitters Club and books that feature kids with diabetes (including nonfiction books like ones about Nick Jonas) might speak to your daughter about her current experience and would probably be best for now. However, you might want to talk to your daughter about how attitudes have changed regarding eating sugar, and insulin regiments, before letting her read them, because many are outdated.

[MikailasMom]

Thank you Jonah! I appreciate your input and the way you see things!

[Ronin1966]

Hello kimmcannally:

Ancient thread, thought I'd rekindle the "embers" if you will...


"Think Like a Pancreas..."

I was a client of Gary's when he worked both in Philadelphia and then later in the suburbs. Have not read his book...

IYHO what was his conclusion? What "flavor" was its presentation if you will?