Little bit of makeup
Today video shoot Hope vs. Fear. Unknown release date. Other people PWD. Bigfoot only POPWD. Improvisational fake sincere banter in cozy, yet fake, yet rough hewn cafe, w. face coated transvestite makeup, hidden bobby pin, microphone snake down shirt/plug in under table, coffee mug no coffee inside: it coconut water, feel eerily natural. Discuss hope, everyone agree of course choose hope not fear. Of course focus on positive. Very nice people. Glad Bubs follow footsteps these fine people WD. Warm, smart, human, no pretense.
Fear part of day more short/more intense. Bigfoot alone under gauzy, pore-refining* light, undereye transvestite mascara smudges Q-tipped away as makeup artist describe plan for gingerbread-pumpkin trifle w. unimpressed craft service. Big camera aim at face. Interviewer beside camera. Interviewer face covered black screen, head appear in Jambi meka-leka-hi-meka-hiney-ho box superimpose over camera lens ask: What scares you the most about diabetes?
No cry. Ramble on and on and on. One bad thread this ramble recommend Xanax/whisky fear remedy, then defensive I don’t even drink a lot I mean I rarely drink oh no heh heh heh now I sound like an alcoholic for sure you definitely can’t use that also mention these fears:
#1 That my child will die in his sleep
#2 That he won’t take care of himself and will ruin his insides
#3 That he won’t be able to get health insurance
#4 That I’m not doing something I should be doing, because I don’t know about it yet, and that my current level of ignorance will ruin his life
Although purpose of short film positive, immediate effect is Bigfoot feel more afraid big picture issues. Never really think to self “Bigfoot afraid.” More think I’m so tired or I’m kind of anxious. Now know: afraid. Bigfoot afraid diabetes long term bad effect child.
Tell Bubs about PWD @ film shoot: one of the men is an elite athlete! He said that starting when he was a teenager, he didn’t take care of his diabetes at all
BUBS: (gasp)
BIGFOOT: He was just so sick of it, of pricking his finger and counting his carbs…
BUBS: So did he go really high and have to go to the hospital all of the time?
BIGFOOT: Yes, he did
That not true. Actually felt fine, was star baseball pitcher. Happy. Took enough insulin stay away hospital, but never see endo, never test A1c. When in hospital w/adult sports injury, doctor discover A1C 14 or 17 or other XX-high number, wife threaten abandon if not improve. So improve. Become elite cyclist.
Hope find strategy for skip over decade-long huge A1c, beeline from parents’ loving care –>elite cyclist?
*one hopes
Bigfoot incredibly brave make movie for the lives of other people. Also good to know – afraid. Afraid is different than anxious. Pretty sure end of process of both is same – life is one day at a time type bullshit that is true when you live with illness. But truth is that. I’m less afraid when I just do today and this moment. Future is scary shit. today, focus, move, carry on, blah, blah, blah. You know?
Yes! You are right. I think we usually do just do “this moment” in terms of this illness…but now I think: what if there is something I could be doing *at this moment* that I don’t know about that will guide him toward always caring about himself as much as I care about him? I guess that’s not “in the moment” in the traditional sense at all. Or at all.
Thanks Dr. J.
“That I’m not doing something I should be doing, because I don’t know about it yet, and that my current level of ignorance will ruin his life.” Wow – this hit me hard. Swap “his life” with “my life” and you’ve captured one of my biggest fears.
Whew – so I’m not the only one who has discovered that Xanax/whiskey combo?
Great meditation on fear/anxiety! What’s the film – is it DxOne or…?
I’m afraid too. Remember what Pam said, “micromicromicro is the only way to get macro results”. Beach camp, Halloween disco garage party and your-the-best-mother no-touch ribs equally important. If you’re missing something, you’ll find it. You’re very good at this!
Good for you, I’m glad you are participating in stuff like that! It must be nice to meet so many other people that know where you are coming from. I functioned with type 1 for at least a year with no insulin (when I was finally diagnosed correctly my A1C was 15… eek) but I’m sure it caused damage that I will be faced with later in life. I am glad that Bubs thinks this lack of care is bad and good for you skipping the details that makes it seem not so bad. It’s too easy to make excuses for not taking care of it, so not wanting to give more is a good thing!
Just keep him safe now. I am afraid too but I just know research is going to open up possibilities for these kids. Ten years. I know there will be noninvasive glucose monitors by then. I believe beta cell transplants will have been perfected as a therapy (it’s not a cure). My hope is a safer insulin will be discovered by then. Between the noninvasive monitors and beta cell transplants it will be a lot easier to keep blood sugars in range and keep them safe. Hang in there… you will be able to manage him and help him until then. P.S. Not a huge fan of the artificial pancreas but that will definitely be out by then; they have had very good results keeping PWDs in safe range overnights with the AP.
Fuld.
all your fears are my fears! FEAR TWINSIES!
i wish to see the outtakes from this film, perhaps in the special features section of the dvd?
that was an excellent jamba clip to link to. how unsettling the interview would have been for me in that context!
ha ha ha!
and it was Kerri Sparling’s sweet face, making it all EVEN CREEPIER. it should have been more of a zombie face.
omg! it’s funny cos of zombies and chris sparling.