Category Archives: Uncategorized

Support Group

I was at a support group meeting a few years back.  I was living in Boca Raton, Fl, at the time.  I was doing good.  On an upswing in life.  I had been attending this meeting every month for the last few years and had a “reputation” of someone to follow or learn from.  

A mother of a newly diagnosed 11 year old girl came to the the meeting.  You could see the desperation in her face.  Looking back, she was seeking validation that it was going to be ok.  When she “shared” she began talking about all the great things her daughter had done and how the diabetes had not slowed her down.  

Then I fucked up.  It was my turn to share and I needed to keep my reputation up and I was seeing the denial the mother was showing and I used a word that catapulted her from Denial to Anger.  I used the word disability.  I talked about how having T1D was a dis-ability.  I knew first hand.  I played hockey and soccer at a fairly high level throughout college.  At times, I was at a disadvantage.  Didn’t mean I couldn’t play. But….it was harder for me with diabetes than if not.

Having diabetes is a handicap.  OOOPS! I used another word that literally had her out of her seat.  I played on the golf team too.  Any of you who play golf know that everyone has a handicap.  

Ok.  I was now under full attack.  By the way, where was the daughter?  Why wasn’t she at the meeting?  Too young?  Over protected?  I don’t know…

Why I am writing about this?  It was a long time ago.  Well…..I’ve been on this Beyond Type 1 site for a few weeks posting a couple posts and reading the posts of others.  And I am awakening to the fact that it really doesn’t matter if you are right or wrong, if you are struggling or you are unicorn whisperer, what matters most is finding a way to validate where you are at right now.  To make it ok because this is a long trek…

The mother didn’t want to be pushed that night to see the reality of her daughter’s dis-ease.  She wanted to be supported.  At the time I thought that enlightening her to the truth of the matter was support.  This is not always the case.  Sometimes you just need to be listened to and understood.  

For me, the reality is that this condition has been a real battle.  It has mostly got in my way and altered my perception of life.  I’m 57 years old and I didn’t plan on being here this long.  Now what?  Well…..If nothing else….today I would like to think that instead of triggering that mom with a reality that she did not need to address at the time…I would have validated her for being there and being an excellent “co-pilot” in her daughters “flight.”   

If it wasn’t for my mom I wouldn’t have made it this far………

The Five Phases – a map of the territory

The Five Phases

A Map of The Territory

An Approach to Mastery and Transcendence of Diabetes

I was diagnosed with Type 1 Diabetes (T1D) in November of 1976 at the age of 14.  T1D is one of the most misunderstood physical conditions.  I believe it is misunderstood because, in a normal body, the affected systems are in perpetual motion without conscious thought.  Furthermore, it is complicated.  There are some fundamental components to the system which was destroyed through a roque immune system response. The fundamental components include food, insulin, physical activity, blood glucose levels, injections, finger pricks, water….But there are other factors that have influence on this system of insulin production and use.  Factors like stress, sickness, depression, infusion site issues, finances, complications, being different, performance issues…..It effects every other system of the body because all of the systems seem to be integrated.

Over the 42 years that I have had to manually inject insulin while keeping my blood sugar levels in a “safe” range in order to physically survive, I have become somewhat of a “systems inquirer.”  There are infinite systems throughout the universe and within the physical body.  There are many ways to describe a system.  A description is a map.  A map of the territory.  As T1D’s the doctor or the CDE will be talking and it will sound like blah, blah, blah, sometimes because it is such a rudimentary map they are presenting and we have heard it before.  We know that there is no way they could possibly understand.  My mother and my brother and a few close friends are the closest to understanding but they stop short when they become aware of how horrible it really is.  Few people understand the feeling of blood sugar swings like we do.  All of them have needed a snickers bar because they got irritated.  A few have passed out because they are hypoglycemic.  But none of them know what it feels like day in and day out with the sword of Damocles hanging over us in the form of potential “complications”.

There is no one way to describe a map.  I have found it beneficial to look at several maps of the same or similar territories in order cultivate a deeper understanding of the territory.  And since joining this site I have been inspired to chip through my 2 year long writer’s block and get it done.  I have written for several years and posted a lot of it in my blog and website.  I believe the link is in my profile.  A few years back I wrote a blog series called “Transforming Diabetes.” It’s a 9 blog series where I am attempting to describe the system of managing bg’s as a T1D and integrate some yoga system principles throughout.  Two years ago I wrote a blog series called “The Yellow Brick Road.”  Both blog series are on the tab portion.  Now I am starting to write the “Five Phases.”  I am excited about getting this done because it is really the culmination of 25 years of work. 

The Five Phases will be a description (a map) of living with diabetes in this world (the territory).  I will be presenting multiple perspectives of systems. Buckminster Fuller was one of this most prolific thinkers and inventors of the 20th Century.  He was the ultimate systems guy.  He said in a long essay where he was re-thinking the Lord’s Prayer and the Creation of the Universe:

“Total Accountability and Total Feedback

Constitute the minimum and only

Perpetual Motion System.”

The System we must put in place, monitor, manage, carry around and live with is no different.

Life AS a type 1 diabetic

Yes, low carbs helps.  Figure out your trends.  Test a lot.  Workout.  Fast to check your basal rates.  Workout.  Drink Water.  Meditate.  Don’t give up.  Hang tough.  I am not a very good diabetic in the sense of all those things.  There are times when I was all over it.  There were times I didn’t get off the couch and ate potato chips and beer.  Cultivate the attitude of private investigator.  Think of managing blood sugars like flying a plane.  The food you eat is your fuel.  The insulin is the acceleration system.  Your test strips or CGM is your altimeter.  The physical condition of the plane is the physical condition of your body.  Connect to the “Athlete Within.”  Take some time to find your “Edge.”  Inquire into yoga.  Hang tough!  I’m still here after 43 years of this nonsense. Could go at any moment though. “I’m hovering like fly waiting for the windshield on the highway.”  Lyrics from one of my favorite albums……Put the headphones on.

 In the meantime, I quest on for a cure.  Namaste.

The Buddha

Questions:  What does inquiring into the Buddha have to with diabetes?  What value could I possibly get from reading about, studying, testing a few of his “techniques.’? Does it have anything to do with Religion because I am out of here if it does?  I believe in science and evolution and have no time for anything that is not grounded in science so I probably won’t read on if that is ok with you?   I’m interested, will you continue?

Me:  Yes.  

I was 14 when I was diagnosed.  As most, if not all of you, know – this is quite the shocking event.  When I look back, one of the “processes” I went through was The Grief Process. If you are not familiar with it, it is a 5 step process human beings seem to go through when experiencing great loss whether that be a death of someone close, losing a pet, sustaining a serious injury, a chronic illness…etc.  It could be the loss of anything that is perceived as valuable or which there has been, is or could be attachment to.  

A diagnosis of Type 1 Diabetes is certainly a loss.  In computer network terms (and the physical human body is much like a computer network) it is a point of critical failure.  A critical system of the body has been attacked and damaged to the point of total system failure.  The body cannot continue on.  Until the advent of insulin that is.  

In my opinion, the most profound TRUTH that the Buddha taught was that suffering has a Cause. The Buddha was a prince of a wealthy kingdom before he became the Buddha.  All of his desires were fulfilled immediately and abundantly.  He wanted for nothing.  But one day he escaped outside the walls of the kingdom and he witnessed much suffering.  To make a long story short he sat under a cool looking tree and had one of those Aha moments and discovered the root cause of all suffering.  

The Buddha discovered that all things that arise are bound to pass away.  He saw The Matrix in all its glory..

He saw that Nature was impermanent.  In Sanskrit this is called Annica; The Nature of Impermanence.  If you know anything about Quantum Physics or watched the movie…”What the bleep do we Know,” you know what I am talking about here.  

He discovered that suffering arises because of attachment.  And attachment arises because of craving and aversion.  And craving and aversion arise because of the mind’s momentary reactions of liking and disliking.  The more intense the reaction of liking and disliking, the stronger the ruts (Sankharas) of craving and aversion.  The stronger the craving and aversion the stronger the attachment.  And, the stronger the attachment, the more there is suffering.

It is nearly impossible to live a life without attachment and therefore, without suffering.  We all attach to things we like, want, don’t want, wish for, desire, love.  We become attached to our parents, friends, jobs, identity, ego, children, way of life, worldview……anything you can imagine.  According to the Buddha and great Zen Masters, the enlightened person consciously chooses what he/she will attach to, knowing full well that it will lead to suffering. The awakened one chooses his/her suffering.

Losing the ability to naturally produce insulin is a great loss. Talk about attachment.  The irony is sooo profound.  We are now attached to insulin, pumps, CGM’s, glucose tabs, alcohol swabs…..

The Buddha has nothing to do with Religion.  Yes, a religion has been created in his name.  Exactly like a few other religions.  A matter a fact, all religion is man made.  Sure, it may be Divinely inspired but all of it is man made.  Does that make it bad or invalid? Certainly not.  We live off ingenious man made inventions.  

I could go on…..I have studied many religions and metaphysical “maps of the territory.”  All of them are maps.  And the map is not the territory.  Just like science.  Science is a map.  At best, science is an accurate description.  Science is the “sense” of humanity and the world we live in.  Religion, on the other hand, is the “soul” of humanity and the world we live in.  In my opinion, it is a huge mistake to disregard, ignore or dismiss religion and spiritual inquiry.  It’s like “throwing the baby out with the bath water.”

This condition we have is a profoundly emotional, mental and spiritual dis-ease along with it being a physical challenge.  

The Buddha’s discovery was that the root cause of all suffering was IGNORANCE. Specifically, the ignorance of the nature of impermanence.  If we believe that something will never pass away or decay or be lost then we are deluding ourselves.  

As Type 1’s we are rudely awakened to the nature impermanence simply in the fluctuations of our blood glucose levels.  

If Ignorance is the cause then the cure must be awareness of, awakening to, conscious of.

The Buddha’s teaching is a path of Wisdom and Enlightenment through the witnessing of the nature of impermanence while minimizing reactions of liking or disliking (Equanimity).  This is real meditation.  Now that is a yoga pose!!!…

Is it our fault we got diabetes?

I was diagnosed at age 14 in 1976.  Oldest of 4.  My youngest sister being 5 years younger.  Athlete.  A- student.  Son of a Doctor.  Disney World type childhood, or so it seemed.  The family dysfunction began to raise its ugly head right around this time.  My parents would divorce 6 years later after 5 years of increasing dysfunction.  

I often used “my diabetes” as an excuse to be the victim.  I manipulated others because I was sick and I could die.  I could die.  Back then, children didn’t think about dying.  The diagnosis of T1D was an expression of the dysfunction of everything around me.  It felt like both the cause and the effect.  I also, felt like a victim because I was told I did nothing to bring it on.  What was I?  Why me?  Are you freaking kidding?  Perfect set up to become “The Victim of Circumstances.”  This “attitude” magically produced a myriad of ‘valid’ and ‘reliable’ excuses to not be responsible for myself and to others.  I developed into that kind of person.  Then, after hitting a, proverbial, bottom, I engaged myself in a concerted, intensified and sustained effort to make a break through and transform/change.  Something had to change.  My A1c’s were in the 11’s and I was not doing the things I knew I was suppose to do while, at the same time, engaging and ingesting activities and whatever that were not good for me.

It took about 6 months.  It consisted of intense physical workouts, focus on food as fuel instead of something to fill desire, acupuncture, cranial sacral therapy, Chinese herbs, massage, yoga, meditation and inquiry into a few spiritual/metaphysical perspectives.  

The “Tipping Point” was the moment that I became aware that I was 100% responsible.  Not 0%.  Not 50%.  Not 99%.  It wasn’t a decision.  I didn’t commit to anything as far as becoming more responsible or accepting responsibility even though these things happened.  NO.  It is more like a veil came of something that had been covered up.  I believe this veil came off because I made the effort to push my current edge. 

Is it my Fault?  Who, in the end, is to blame?  I know this much, and as I write it maybe it is the blessing to the curse…..I am the Cause instead of the Effect of Diabetes.  Because I choose this position I am more “response”-“able” to handle what arises.   That is my personal experience.