One of my questions of the week from Morpheus was “How would I act without guilt?”.

I’m not sure… I’m not sure I’m to a point where I can even conceive of that, almost as if it would a total flight of fantasy.  You know, it’s almost like asking me how I would act without diabetes; what would I do with less stress & worry and all the extra time, lifespan, and disposable income?  But not quite…

I think it is possible for me to let go of the guilt I feel.  A lot more possible than a cure, at least  as how things stand now.

I just hope that I can honestly do it.  I am able to game most, if not all, of the multiple question, multiple choice psychological  questionnaires (that whole photographic memory thing).

I hope that I don’t let myself game this.

 © 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

As I was talking with Morpheus last week, my weekly question to think about was something along the lines of “How are you able to treat some “failures” as a “learn from it and move on” experience and yet treat other “failures” with guilt and shame?”

The first thought that came to mind is that diabetes management is often an exercise in failure.  Of the 15 or so things that can affect glucose levels, we can realistically only control 3 or 4… insulin, exercise, food and to a certain extent, stress.  And being human we will make mistakes, or get sick, miscount carbs.  And then we may forget to bolus or have a infusion site that just isn’t working.  Oh, and let’s not forget about those WTF days where nothing seems to work right for no discernible reason.

Being able to learn and move on may be one of the most important life skills that a diabetic can posses.  Of course, we can’t always do that…  Sometimes we get burned out, sad, frustrated, and/or downright angry at times when dealing with diabetes.

So why can’t I apply that same “learn and move on” mindset to other things in my life as well?  Things that I view as “failures”?  I would imagine that some of those things were times when I have hurt or let down others, people who were trusting me.

Getting past the guilt will be easier if I can just say I’m sorry to some of these people, but many of those things happened in college… 30 years ago.   I’ve tried now and again to track some people down, but with no luck.

So what do I do now?  Is it as simple as saying to myself “Self, you effed up, but it’s been a long time and you may be the only person who even gives a damn any more”?

Unfortunately, I suspect it will be much harder than that.  Knowing something is one thing, taking it to heart is another.  I have lived with a sense of guilt and failure for so long that it is a hard and uncomfortable thing to change.

Failure is a part of life, everyone fails at something upon occasion.  What I need to figure out is how to stop myself from finding a way to make something a failure where anyone else would see a success.  Stop being so hard on myself and treat myself with the same compassion and understanding that I try to treat others with.

Of course, that may make the universe implode…

Today’s snarky comment: Issues, I haz zem

 © 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Last time, I wrote the words For that is all a young child can understand.   Those words, those related thoughts seem to have formed the basis of my approach towards diabetes; indeed towards everything in life.

Those words related to the fact that it must be my fault. Even though I understand now it wasn’t, at that moment it was.  That blame became the basis for self-doubt, a constant sense of failure that led into a lifetime of negative thinking, depression… a sense of literally being cursed.

Cursed?  How did it being my fault make me cursed?  Well, you see, I was also supposed to die 20 or 30 years ago.  The longer I survived, the longer I was cursed with the guilt.  And failure.  I couldn’t even get a disease to kill me when it was supposed to, I couldn’t even get it to ruin my kidneys or vision or anything else it seems.

I’ve often wondered why I have so few memories, let alone vivid ones, of my life.  Especially since my memory can be damn near photographic of things I see or read that catch my attention.  It seems that I was insulating myself from emotions, emotions attached to those dim memories; emotions of guilt, failure. Of pain. Of the joy that we should all be able to witness, the joys that I wasn’t supposed to be here for or enjoy as some twisted penance for that sin of being diabetic.

That, of course, played right in to the sense that I wasn’t supposed to feel good, feel happy.  I never let myself feel those things.  It was a waste of time, you see, for me to have such things being that I had a lot of suffering to do before I died.  Not to mention that whole “should already be dead” thing.

After a while it just became easy, too easy, to say “why bother”.  I’ve blogged about that before but hadn’t been able to link that to things that happened so long ago. To understand where it all started.

That understanding remained as the cornerstone of my entire life, that simple understanding of a child.

© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Circa February 1970:  A seven year-old child learns he has a disease that will never go away and will kill him.  Something happened to him that his parents would never let happen, something that God would never let happen. It has to be someone’s fault so he is left with the indisputable fact that it is his fault.  For that is all a young child can understand.

As some of my closer friends know, I have been seeing a therapist for the last few weeks.  I like her, feel comfortable talking with her.  It’s nice to talk with someone that has no history or preconceptions of you but at the same time, she asks questions that friends wouldn’t and makes me answer them.  I need that.  It is also scary as hell.

In the movie The Matrix there is a scene where Neo and Morpheus meet for the first time.  Morpheus gives Neo a choice and tells him that if he takes the blue pill he will wake up in his own bed and be able to think whatever he wants.  If he takes the red pill, he will stay in Wonderland and Morpheus will show him how deep the rabbit hole goes.   Morpheus then tells him that he only promises to show Neo the truth.

I’ve just taken the red pill.  And the truth isn’t pretty… but at the same time it is magnificent.

© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

I’d like to thank everyone who has visited, read and commented here at Strangely Diabetic in 2011.  It’s been a great year for me personally, having been able to meet so many other members of the DOC in the past 12 months both virtually and in real life!   You all inspire me and help me cope with everything life throws at me, not just diabetes!  Thank you all so much

Highlights for me included:

• Being invited to attend the 2011 JDRF Government Relations Day(s) in March which was a great experience.
• Being fortunate enough to attend the 2011 Friends for Life Convention in Orlando and meet so many fantastic people.   Heck, British comedian Oliver Double even gave me a shout out at the conference during his fantastic comedic presentation.
• VJ over at Diabetic365 gave me the opportunity to appear on his vlog
• Chris interviewed me on his podcast of We’re Just Talking and my cat was the star!

In conclusion, I’d thought I’d list the top 10 most read posts for 2011

1. I’m Sorry, Doctor, But I Take Exception to Something You Just Said
2. I Saw Children
3. Hello JDCA, I’m Part of the 85
4. Another Blue Candle and Yet Another
5. Everything Is In The Numbers
6. Once More Into The Breach, Dear Friends
7. The Children Are Our Future
8. A New Direction In Kansas City
9. Glocose Test Strips as Durable Medical Equipment Under Obamacare?
10. You Can Do This, Take 2

Again, thank you all so much and I wish everyone a fantastic and safe 2012!

P.S. Don’t forget FFL 2012!

© 2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

** or The One Where I Defend the JDRF – #whodathunkit

I’ve been known to criticize the JRDF on occasion … well a couple times … ok quite a few, but after reading a press release from the Juvenile Diabetes Cure Alliance (JDCA): JDCA Report:  New JDRF Logo Has Negative Implications For A Cure, I was actually more than a little offended and also quite dismayed that

1. They are so late to pick up on this,
2. The don’t seem to have actually talked to anyone from the JDRF,
3. They seem to have done almost no research on this such as the January 31, 2011 DiaTribe interview with Jeffrey Brewer. I mean you should know who the folks at DiaTribe are since they were covering research way before you kids hit the block, and
4. They should know by now that the term “Juvenile Diabetes” is just a tad outdated.

Before we get started, the JDCA seems to be a watchdog organization for Type 1 Diabetes research (more on them from DiabetesMine) and the stated mission of the JDCA is:

The JDCA’s mission is to direct donor contributions to the charitable organizations that are most effective at allocating funds to research opportunities that maximize chances of curing type 1 diabetes by 2025.

If you read the PDF that accompanies the JDCA analysis, you will note that the document is subtitled “Voice of the Donor for the Cure”.  While I realize that donations are important, no where in that detailed analysis can I find anything that places the patient as being anywhere near as important as a donor.  For example:

A higher quality of life is a worthy objective. However, the JDCA believes that most donors contribute for the reason of a cure. We also reiterate that the treatments/complications marketplace is already well served by commercial enterprises and an increased emphasis on managing type 1 comes at the expense of cure development. Curing the disease still remains a part of JDRF’s mission, but it is listed second, behind improving lives.

and

Another element in the rebranding involves a name change from Juvenile Diabetes Research Foundation to simply JDRF.  The word “juvenile” is eliminated in recognition that a large percentage of the people living with the disease are adults. The JDCA does not believe that JDRF’s greater commitment to help adults that are living with type 1 better manage their health reflects most donors’ desire to develop a cure.

In the DiaTribe interview, Kelly Close asks

Kelly: How is JDRF prioritizing the cure going forward?

Jeffrey: As I said, we’re moving towards a 50-50 split of activities and funding between cure and glucose control/complications.

Seriously guys, this was 10 months ago and if you had spoken to some folks at the JDRF as I have, you would have known that this has been in progress for a long time, changing the mission like that was not a choice taken lightly and they have taken both heat and gotten support for it.  As a matter of fact, internally, they are still experiencing resistance from some local chapters.

Now here is where I’m am going to get into the shortsightedness of your analysis.  I’ve been a Type 1 diabetic for over 40 years, and the cure has always been “just around the corner”.  Do you know why I spent the majority of those years totally disconnected from the JDRF?  Because after hearing the same thing over and over, I stopped listening, I stopped believing just as my friend Allison did, and I know that she is not alone.

You appear to have applied simplistic mentality to a subject that is so deeply personal in so many different ways to different people.  In effect, you left the patients and caregivers totally out of the equation.  Foolish.   Foolish because these children grow up and their caregivers will still love them as adults.  And guess what, those diagnosed as adults have people who love them too.  I certainly hope your “analysis” doesn’t do more harm than good.

Here is the brunt of it. 

If we don’t work to help diabetics live longer, better, complication free lives how many will actually SURVIVE long enough to see this cure we are all so eager for?

Are you honestly naive enough to believe that the cure is anywhere in sight?  I notice you did not give an estimate of the chances for a cure by your desired date of 2025 or mention that the “cure” may mean different things to different people and may not match your stated definition of a cure (which took me a bit of digging to find from your blog, btw…)

Let me put this into a “donor” frame of reference so maybe you’ll not be so confused:  85% of the approximately 3,000,000 diabetics are adults.  So instead of ignoring 2.55 MILLION potential donors, advocates, mentors, and volunteers why not embrace them and help them as they grow from being children to teens to young adults to parents to grand parents to whatever dreams they might have?

Just this week, the world had yet another Blue Candle lit, hopefully you guys recognize what that signifies, due to the fact that a young life was silenced by diabetes.  A young life that could have been saved by one of those “treatments” you seem to place so little value in.

I am not a parent of a diabetic child and I have the utmost respect for them and how they are able to do all they do. But, if I had lost a loved one and some organization had been promising a cure for as long as I could remember?  I’m sure as hell not going to give my “donations” to them.  Even more so if they had been tunnel-visioned on “some cure” when they could have advanced treatments to keep my loved one alive.

I’m Part Of The 85.

Are you?

© 2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com