Ark 1: Floods

My story as an old guy with a beard, a double diabetes deluge
on a boat.

I know the rule of polite society that says I’m not supposed to talk about religion. I’m not all that polite.

I think religion is about life and doing good. My religion is about my life. Hopefully it helps me do the right thing.

Writing helps me sort through and find what I really think. This essay is a reaction to a church service that hit home. Well three services. They were a series and so is this. The series spoke to me and various stages of my life with the kids’ diabetes.

Since living with the variations of diabetes is the point of YDMV I figured I would share my thoughts. It has been a couple of years since I have sprung philosophy on y’all. Now, like then, you may not recognize me as the author. Now, like then, I hope it is a pleasant surprise.

Before I go into the series here’s my basic philosophy: Good stories are allegorical. Same goes Bible stories. I can find a message about my live in them someplace, if I look. For example, I don’t have to be Thomas Aquinas to figure out that Jesus told stories that meant more than just their face value. The whole tiny grain of mustard seed growing to large branches isn’t about growing herbs. It is about a little truth growing to be important in life.

Stories are like that. More than meets they eye. I try to see the whole. I am not real good at it but I try. Sometimes I find something to see.


Which brings me to the Ark series. It came in three parts:

• Floods
• Floating
• Covenant

It is a story that featured Noah and a flood. That was about where the expected ended.

So we got a flood. A big flood. A life changing killer flood.

Floods. There is the spring flood, the 100 year flood and the ever popular 500 year flood. Everyone faces floods in life. I think everyone reading YDMV knows floods. Not the water type, the life altering, spiritual challenge, break your heart flood.

Feel free to raise your hand if you think you know what I am going on about.

The guy who gave the talks, Chuck, said that we all get all the floods. We are all busy making plans and Bam! We get hit with a flood. Mine was less a diabetes diagnosis or two per se and more our school’s reaction to them.

Feel free to raise your hand if y’all know that school and diabetes flood too.

Now the floods aren’t there to punish us or specifically be trials (see my previous musings linked above). Here was an interesting part Chuck brought up that I never thought about, the floods are there to help wash away stuff. Stuff that is in my head and heart. In the bible story these things are playing the parts of “The giants, heroes of renown.” In short that part of myself I put up on a on a plinth. My own rigidity, selfishness and maybe even my own home grown doctrine about how I make value of stuff in myself.

What I understood him to be saying was a flood is a change that happens and in it we loose some bad stuff and maybe gain some good stuff. While god may work it out for the best in the long run, it doesn’t seem like there is anything worthwhile going on as the water rises. Not that there is a whole lot of alternative - it is on the boat or in the water.

None of us got a choice. Our families got type 1. We were all overwhelmed. Bring on the flood. Yet somehow, before hand we built a boat. Apparently god called us to build it in the back yard. I am not so sure I knew I got the call.

What is an Ark? A vestal to hold us and what were bringing aboard. As in an emotional life boat. Chuck’s message was the Ark was faith and that faith is the ability to see with the eye of love. OK I’ll take that on faith and I’ll loop back later.

So what is in the boat?

Noah is in the boat. The heroes we built up - not in the boat.

Noah is some unselfish part of ourself, some part that somehow walks with god. Even in the deluge that part gets on a boat. So do a lot of animals. Clean and unclean and we all go floating.

And it keeps raining. Forty day and forty nights. I’m getting a flood and it keeps coming. Folks I am here to say diagnosis is only the first day of rain. It is overwhelming. You get into your life boat with the best and worst of life. It keeps raining. Every day. The water keeps rising.

It isn’t a pleasure cruise.

Nobody tell us how long we are gonna be floating. Hell it just keeps raining.

Nobody knows how long the dazed and confused feelings at diagnosis are going to last. It rains for forty days and nights - the water rises for a month and a half! It just keeps coming. (And those jack asses at training are talking about a Honeymoon! - WTF!) There are clean and unclean animals in the boat with us, hope, kindness, fear, guilt.

There is no land to be a landmark. It is all under the water. We have no clue where we are.

Adrift.

One Window.

Surrounded by the best and worst animals of life and it’s mate. Oh and we better get to work doing stuff. We are in a place we have never been before and doesn’t matter if it came from love or fear the stalls need to be mucked out 'casue we are knee deep in it.

In our case we gave shots and poked steel shards in our kids’ arms and fingers and try to pretend it was all OK. We smiled and that smile was a big lie to keeps the kids alive. Bad and good and it's mate.

Is this sounding familiar to anyone yet?

In my case the flood was not just a child or two being diagnosed with diabetes. The deluge was being set adrift when our church school administration turned those kids out rather than even considering trying to follow best care practices. Noah got on a boat while a lot of what I thought I valued drowned.

I am not sure who Noah was. That is, what part in me was Noah. He may have been that part that cared as much about the next T1 kid as my own. I know that as I cried and cursed my sister, the single strongest supporter my wife and I had in our floods, kept telling us that we weren’t just going through this for just our kids. That we were in it for all the T1 kids who will sadly but without question follow. I would like to think that but I am not sure. I am OK with not being sure.

I know I went for a long rudderless ride and how I saw the future a few years ago isn’t where we are. And now in retrospect maybe that isn’t necessarily a bad thing.

As for the Ark, well that is real tough because I wasn’t particularly looking out with love a lot as my personal floods kept pouring in day after day. Somewhere in the time the kids were kicked out the first time, I was unemployed and home with them, inventing stupid meter tricks to keep them entertained, I became aware of the online diabetes community. That was something I could look at with love.

I met many of those folks last summer. Looking back I can see how ridiculously important they are to me. But that is getting ahead. This essay is about staying above rising water.

This is about personal floods. We have had’m. Don’t recommend’m. In point of fact everybody get them and that what the Ark story is about.

For some of us the flood is a T1 diagnosis (or two.) We think diagnosis is the flood but it is just the first day and the sky is dark grey and keeps raining. We are adrift with the best and the worst, hope, kindness, fear, guilt. At 34 days into a forty day flood the boat stinks, we are sea sick, there is no sign the rain will stop and humidity does nothing for the smell.

Noah is in some part of us. Some part part walks with god even when there is a flood and walking is not an option. If nothing else I find comfort in the idea that the story doesn’t end in the flood on day 34.

Next up: Floating or what you learn alone and adrift.

The Ark series that inspired this is partially available on line at http://vimeo.com/6708135 Partially in that all talking is there sadly the music of the services isn’t. Each service featured amazing music, rock for the most part but the music is most notable for a hauntingly beautifully version of Somewhere Over the Rainbow that brings tears to my eyes thinking about it. The full service is with tunes available on a DVD. They don't have an online store but you can email http://mrd.mail.yahoo.com/compose?To=chuck.blair%40newchurchlive.tv and he can get you a disk.

Ark 2: Floating

I learned while adrift that floating is hard.

During the deluge following diagnosis each day’s flood brought something new if not welcome. Somewhere around the day 34 came the emotional realization that type 1 is forever.

That was that day’s flood. If nothing else it was a change from the prior day’s flood.

It rained a flood and kept raining but at least the rain was flowing. After the deluge of emotion that comes with a type 1 diagnosis comes a drifting emotional separation.

The changes stop coming.

Without the rain it is still.

I just try to live with it.

Hanging on day to day.

Adrift.

Emotionally detached.

Quiet.

I go through motions.

One step at a time and hang on.

One blood test pretending it doesn’t hurt.

One shot without wincing.

Count carbs like it is normal.

I wonder what I did to cause this.

Or deserve this.

It is hard.

Lonely.

Rinse.

Repeat.

All the while I am sticking surgical steel needles and lances into the children six, eight, a dozen times or more a day. It no longer count as a rainy day, as the flood, because it has become a routine.

One that that will never stop.

What I thought was part of the flood isn’t. It is part of drifting. Just grab on and try to float. I want to go back to the way it was. That isn’t an option.

It would be a lot easier if I could float with out some of the stuff I brought on board. Like the strange feeling I did something to bring this on. Or that I didn’t do the poking, measuring and shots that I had to do just exactly right.

Floating is hard.

I am alone. Made more so when well meaning but uninformed people pass on silly but hurtful suggestions that I caused this or some simple cinnamon snake oil will cure it. It is so much easier to shut the world out and float alone. So I do.

But floating in isolation is hard and I brought guilt aboard.

Guilt lives in the type 1 universe in ways I don’t even begin to appreciate. It is part of the official canon of some medical practices, “You need to be more compliant.” Guilt has a great PR agent who repackaged it as 'ownership.'

For now, in the drifting stage, know that guilt is one of the things we brought onboard two by two, clean and unclean.

Floating is hard.

Floating is looking out and seeing nothing but water. We do the best we can. There is chatter and commotion coming from all the good and not so good emotions that we have brought along floating.

If we find while floating the grace to just hold on one day at at time we are doing great. Some where in that isolation and suffering we learn about compassion.

In the second of the Ark series Chuck said of floating, “We get a deep deep level of compassion because we can look at somebody who is suffering and honor their suffering without giving them some trite formula. We can honor how hard it is that day... that gives us the ability to serve, to be human to one anther.”

That hit me.

Every July, I marvel at the community at Friends for Life. When I heard Chuck say that I realized compassion is a huge part of the diabetes community. Many of us are likely to to simply say the people at FFL “Get It.” Now when I say that I realize I don’t just mean juvenile diabetes. I mean they understand and honor struggle because they have been or maybe still are floating. They honor suffering without some trite formula.

Guilt is a trite formula.

It is worse than the hurtful suggestions that we caused this and cinnamon snake oil and we give it to ourselves. We don’t need it. We can be compassionate enough to ourselfs to turn our back on diabetes guilt.

The end of Noah’s floating begins when birds brought him back leafs. I am going to bring this essay on floating to an end by offering two leafs. Two wonderfully compassionate essays to help separate diabetes and guilt. These are gifts from good friends Scott Strumello and Kerri Morrone Sparling.

Float well.

Grab the leafs when ready.

Next: Ark to Arc.

The Ark series that inspired this is partially available on line at http://vimeo.com/7187279 Partially in that all talking is there sadly the music of the services isn’t. Each service featured amazing music, rock for the most part but the music is most notable for a hauntingly beautifully version of Somewhere Over the Rainbow that brings tears to my eyes thinking about it. The full service is with tunes available on a DVD. They don't have an online store but you can email http://mrd.mail.yahoo.com/compose?To=chuck.blair%40newchurchlive.tv and he can set get you a disk.

Ark 3: Arc

Finding new territory.

Just to recap:

First there were floods. Overwhelmingly devastating events only starting with diagnosis. Not just one event but an ongoing series of emotional deluge. In these some things we held important didn't get on the boat. Some part of us did get on the Ark with all kinds of emotions good and bad.

Next we went floating. No rudder, no compass, no GPS, no land to be landmarks... It took some courage to float. We worked through each day step by step. It was lonely. Maybe we learned true compassion and maybe even extended that to ourselves by not letting guilt take control.

Noah’s flood ended. So will ours. He sent out a dove. Three times. The First time it came back but with no sign of life. The second time it brought back an olive leave and the third time was the charm. The bird didn't return.

After the flood that started with diagnosis we go floating, isolated. Eventually we want reach out to see if there is something other than water beyond the horizon. We send a dove. At first it comes back with nothing - the floating isn’t over. I think it is significant that we are ready for it to be over and reach out our hand with a dove. We are ready for something, anything, new relationships even if we don’t at first find them.

The second time the bird brings back a little leaf. There is something out there we can’t see. That is exciting.

The third time the dove stays on new land.

If the bird had not come back the first two times my Noah part would have thought there is nothing out there, even though I wanted something to be there. My Noah would think the bird died, exhausted and fell into the sea, probably eaten by sharks too. But it came back. It proved it could. I think that my Noah needed the bird to come back and me to keep reaching out. By coming back to Noah outstretched hand the bird helped pull him to new territory.

Having proving both it can come back and there is land out there someplace, growing leafs, I gotta think Noah is starts hoping it doesn’t come back. I gotta think Noah get the idea that, ‘If the bird finds a better place than this stinking boat so can I.’ The outstretched hand becomes letting it go with the expectation of no return.

OK that all well and good - here how I see that in in my flood.

A leaf moment for me was meeting a guy name Willie at a JDRF event a few years ago. He was in the corner of an empty room. He became an island. His daughter had been recently diagnosed and they were just back from Friends for Life. We hit it off. His enthusiasm for Friends for Life convinced us to go. What a gift that was, a leaf from new territory full of incredible new heros.

Why did we get along so well? Maybe my drifting taught me some compassion and I could honor their struggle without offering them a trite formula. Maybe the other way round. Who knows? Probably both. I found new territory from a new friend.

Looking back there was a virtual Alfred Hitchcock scene of birds dropping leafs on me. I just didn’t see them for what they were. I guess I was too busy floating and wasn’t ready. I mentioned Kerri and Scott’ pieces on guilt at the end of Floating, here’s just a few other though there were many many more:

• I anxiously looked forward to new episodes Christel Marchand’s diabetic feed podcast. I got to meet her this past summer and she is far more dynamic than I could have guessed and I had ridiculously high expectations.
• I read and wrote on ADA and CWD’s forums where I joked regularly with Nick. I wrote Bad Thing Happen to Good People for him.
• I became friends with Mark who explained who the parents are the primary care give for type 1 kids. Doh!
  
• I met folks who could invent Tim. I know inventing Tim makes no sense. In that is the brilliance of how welcoming the natives of the new territory are, from facing a similar deluge they can simultaneously create and mock a boogieman to laugh at and honor floods.
• Joe explained explained unrealistic expectations as when to smoke another bowl.
  
• Ellen got accused of peeing on someone's online Cheerios and that was a chance for me to send a message.
  

I admit it. I was so used to floating I mistook the all the leafs falling from the wind that pushed me to new land as just another day tossed about on the seas. There was a whole diabetes online community out there dropping leafs like rain drops in the deluge.

Through all of these folks I realized what it means to see with the eye of love that I had to take on faith back in the first of these essays, “..faith is the ability to see with the eye of love. I’ll take that on faith and I’ll loop back later.” Here I am.

From these folks I have learned that looking at somebody who is struggling and honoring their suffering without giving them some trite formula is often little more than the courage to share my own experience without any expectation of return. I love these people for showing me how to do that. To a woman and man none claims to be a perfect diabetic or parent. They simply shared their daily triumphs and challenges. They honor each other’s struggles and in doing so are simply human to one another.

Thanks for taking me in. What a place to find. What a promise to join.

The Noah story closes with a rainbow. A covenant. Chuck said you can can only see a rainbow when with the sun at at your back and the storm passed. The Ark series talking about the end of the rainbow. That the pot of gold is when the storm clears there is the chance to know the intimacy that god intends for all of us.

The ark becomes an Arc, a connection, a promise.

Coming out of my storms I have found a lot of people I would have never know, who’s struggles I honor and am honored to have shared with me.

That is that is my Arc story. I am a little amazed at what came out writing it. If anyone finds value here, great! It's yours with no expectations.

There is a pot at the end of the rainbow.
I couldn't resist.


I say it down there in the fine print but it worth saying up here. The music that went with the series was outstanding. There are a number of renditions of Somewhere Over the Rainbow. Marguerite singing with Brian on acoustic guitar is unbelievable.


The 3rd part of the Ark series that inspired this is partially available on line at http://vimeo.com/7401547 Partially in that all talking is there sadly the music of the services isn’t. Each service featured amazing music, rock for the most part but the music is most notable for a hauntingly beautifully version of Somewhere Over the Rainbow that brings tears to my eyes thinking about it. The full series is with tunes available on a DVD. They don't have an online store but you can email Chuck.Blair@newchurchlive.tv and he can set get you a disk.