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Re: [IP] Moms unite

On 2 Sep 00, at 14:50, email @ redacted wrote:

> I am on the verge of dropping off this list because I am wondering if all 
> list members share the sentiment written to me by a fellow list member that 
> stated that I don't know as much as "they" do because I am not a person with 
> diabetes myself. I "only take care of a five year old and husband that are 
> both Type 1..Does everyone here think that I am not a "peer" because I don't 
> have diabetes?

Let's take a short break and count to ten... 1... 2... 3... 4... 5... 6... 7... 8... 9... 
10...  Better now?  There are a couple of ways to address this, but as I 
climb up on my soapbox (here comes another sermon, better check my bg 
first!)  I think I'll just dive in...

The first item to talk about is "peer"...  I thought "peerage" only mattered 
in England or other countries with a strong Royal tradition...  As far as 
diabetes is concerned I don't think you are my peer - and I thank God that 
you have been spared some of the things that I've gone through - and I also 
pray that I will never experience some of the things you go through as you 
seek to take care of your family members with this nasty affliction.  That 
said, I think I have much to learn from you and you have a little to learn 
from me as we discuss our experiences, hopes, dreams and fears.  

In what really matters you are my equal - a human being who lives each day 
hoping for a cure, and seeking to use the best technical means available to 
ensure that you and those around you are enabled to reach their God given 
potential... what ever that may be.  You are a parent who is attempting to 
ensure that your child is allowed to grow up in an environment where they 
can reach that potential.  I have a son with Down Syndrome, you have a 
child with diabetes...  Even though the details of how we are coping with our 
children's problems are different, I'm sure that both of us are advocates 
for our children...  

I'm sure that in some areas you don't have the same type of knowledge that 
I do, and in others areas your type of knowledge may actually be more 
valuable than mine.  Something you need to try to understand is that many 
of us have an over-developed edge to our perceptions that was learned over 
many years of interaction with "experts" (our doctors, nurses and other 
caregivers) who had no clue about what our lives were really like.  After 
years of them telling us "it's simple, just take your shot... follow the 
SCHEDULE... " from their ivory towers of factual knowledge unaffected by 
actual experiential knowledge many of us have developed this knee jerk 
reaction when someone who isn't an "insider" tells us anything...  

On the other side, I have very limited experience in assisting someone who 
is having a low bg or trying to help another person with carb counting, site 
rotation or the other tasks that we "insiders" tend to require assistance 
with...  So we have different types of experience and knowledge - mine 
comes from being on the recieving end of the needle, yours comes from 
being on the other end.  As long as you don't tell me "this won't hurt a bit" 
(like the "professionals" love to do) you are still a credible part of the 
community!  Your input is important to me because it helps me see things 
from the perspective of a loving, caring family member.  My contribution 
might be to help you to understand some of the difficulties...

One thing you see from a different perspective is that pervasive sense of 
wrongness that sometimes hits with a severe bg drop... it's almost like your 
body is screaming "something is wrong" and your bg has dropped far enough 
your mind is getting fuzzy so you aren't able to analyze and determine 
exactly what is wrong.  My wife has found me wandering through the house, 
obviously upset and unable to say much beyond "something is wrong" and 
then having to lead me through running a bg check only to discover that the 
meter won't register anything except LO...  and then having to convince me 
to drink some milk or regular softdrink when I know I'm not supposed to 
have those without taking additional insulin.  You may have had that 
experience with your family members, like my wife has with me.  You've 
never seen it from the inside, and I've never seen it from the outside... So 
what?  Both of us know the emotional toll that it takes on each party, and 
we need to be able to share this with our supporting friends.  

Which do you want to be?  A "peer" (whatever that means) or a member of 
the group of supporting friends and advocates?  And to the greater list, 
which position do we want the "outsiders" among us to be in?  I think we 
shouldn't worry about peerage, but instead concern ourselves with 
continuing to be a diverse group of supporting (and sometimes struggling) 
friends and advocates.  

For myself, I'll take a friend over a peer any time... and I'd rather be 
recognized as a friend than as a peer too... because friends don't bother 
with some of the junk that defines us into narrow categories but instead 
stand with us in our weakness, ignorance and grief and also celebrate with 
us in our happiness, good news and joy...

May God grant each of us the wisdom to drop the stupid arguments about 
which type is more severe and recognize that whatever the exact mechanism, 
means of attack and treatment, diabetes really stinks.  We are at war - 
with this condition that haunts our every moment, lurks in our nightmares 
and rises to confront us at the most inopportune moment.  We will take all 
the allies we can get!  Our goal is not just to survive, but to survive well and 
live as close to normal lives as possible, whatever normal is...  That's the 
same goals that the outsiders (who have close relationships with insiders or 
at least have a professional commitment to us) should have.  Those who share 
our goals, dreams and fears and are willing to stand with us should be 
welcomed.  Those who don't,  well,  we'll find them and re-educate them 
<grin, giggle and ironic snort> so that as soon as they recover we can 
welcome them into the collective...

Oh, well,  enough for todays sermon...  God bless each one of you!  

Rev. Randall Winchester
WD4HVA (email @ redacted)
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