Virtuality

Surviving Being a Survivor.

There really are very few individuals who can speak calmly and confidently from an informed perspective about what it is like to be an adult survivor of childhood medical abuse.  I am one of the very few people who have come to a point in their lives where speaking about the abuse is neither retaliatory, vindictive, nor discovery-based and predominantly therapeutic in nature. 

I can't really say definitively why I seem to be one of the few adult survivors of MSBP who are able to speak to the issue of surviving Munchausen Syndrome by Proxy abuse.  Though I can make a few very well informed  speculations.   My childhood was normal during the first and most formative years of my life.
I am an amazingly stubborn and tenacious person.  I was able to remove myself from the abuse, more or less, during my early teenage years.  I studied a complementary set of Social Sciences that allowed me more than average understanding of interpersonal and intergenerational dynamics.  An analytic mindset allowed me to distance myself from the situation and view many of the levels  of behavior in which the MSBP operates.  I have a daughter who I didn't want to raise in the way I had been raised, even before I understood what MSBP was, and conscously behaved as differently from my own mother as I could.  

From Virtuality to Other Realities

When I started using the Typepad platform a year ago I tried to create Virtuality to house all my various interests and aspects of self as well as some of the tech interests upon which I draw as I create my  business.  After a few months I realized that I wanted to be able to write more freely than I felt I could under the rubric of Virtuality.   So I've changed the name of this blog to allow me the freedom to write about all the diverse and sometimes disparate topics about which I feel compelled to write. 

So what are these other worlds?  Answers to this quesiton can include:

• different writing personas I have used -- all the way from The Word Wench to Art Pax
• various parts of my content and design business
• sphere of public speaking
• the many realities of virtual worlds
• the reality of tech geeks
• cooperative versus competitive realities
• psychological differences between healthy and abused realities
• frugal, ecoconscious sustainable reality

These are just a few of the realities that I inhabit.  I create them.  They overlap.  They morph.  They evolve I wholeheartedly believe in the power of visualization, framing and intention.  These words can sound a bit "woo woo" or a bit too new age but they reflect a rather sophisticated theoretical anchor from which I moor my understanding of the world and how we each create unique variations within the human theme.  Whether I look at business models or the healing process I see bits of information arranged into patterns and matrices (simple ones) based on semiotics and systems theory. 

I studied with some of the best minds in the world, the ones hashing out the earliest glimmers of post-modern or processual understanding of the emergent paradigm before it was dumbed down and commercially misapplied.  I look at what I call deep meaning as it shifts in cultural systems to accommodate new contexts and practices.  I don't pretend this navigation of self and other, virtual and physical, or real and artificial is an exact process, but I do understand some of our mapping processes and the limiting and enabling contraints placed upon those processes by all the levels of interaction between cultural and biological systems as much as anyone outside of academia who works with popular or business cultures.  I translate between realities.

Holiday Seasons and Health

Growing up in a rural area in the midwestern U.S. in the 1960s my core concept of Thanksgiving is all about watching TV and eating (and football I suppose but I never liked football.) and the opening of deer season. 

I moved out on my ex for the first time on a Thanksgiving Day and remember having a phone conversation with my mother that day in which I received absolutely no support - no direct criticism ei- but no support.   That was the year I needed like $15 more to get a bus ticket home for Christmas (it was only an hour and a half drive away) and when I told my Mom that she said something to the effect that it was too bad I wouldn't be able to get home for the holidays.  The thought that I should call one of my brothers who probably would have come and picked me up (or given me the bus fare) never even went through my head.  All communications went through our mother.  I now realize I was taught to never question or contradict anything she said.  In spite of that,I still miss her on days  especially on days like today. 

When I was little Mom and I always watched the Macy's Thanksgiving Day Parade in the morning while we (she) finished cooking up a storm and the final Thanksgiving preparations were made.  My dad and brothers would always have gone hunting in the morning as that is when "deer season" began.  There was always a ton of food, my eldest brother and wife were always late. They were always late because my Mom and Dad (I'm not sure which one) believed that dinner (not lunch) is served at noon.  End of discussion.  Mom said it was because Dad wanted dinner at noon, but so many things I was told were because of my father were not, I now wonder if Mom somehow wanted to short herself on time in the morning and preparations because that somehow elevated her score in the imaginary games my family played but never admitted to playing and in many cases probably didn't even know they were playing. 

There were babies or toddlers to coo over and with whom I'd play -- the eldest of my brothers was only a couple months shy of being 18 years older than me so I began to have nieces and nephews when I was six years old.  When I think of family members at their happiest, I see them at one of these gatherings.  The Holidays have become very poignant. We sold Mom's house this year. It was just a little over a year after she died that we found a buyer.    For a farm family to no longer have a farm to call home is sort of traumatizing.   I live 1892 miles (I've driven it and that is what the odometer says) from where I grew up.  Mom and Dad are both gone and two of my four brothers have passed away from cancer.

My father died on Christmas day twenty-two years ago.   I won't even go into those stories.  The me of those days before I really understood mortality is only a memory. 

Two days ago I spent day in the E.R. I had the stomach flu last week and the stomach pain wouldn't go away.  I tried to get into see my regular Dr. but the triage nurse told me I needed to go to the E.R.  I had tests of all sorts and was told that everything looked good and basically within normal parameters except that my sugar levels were a bit high. So I guess that was the good news.  Then they said, "but....your liver enzyme levels are elevated.    We can't say what is going on but you need to have your own physician follow up with more tests to find out what is going on."  I didn't tell the Drs in the E.R. that I have a very good idea of what is going on.  I didn't want to spend a night in the hospital so I didn't tell them.   One of my deceased brothers had been diagnosed a couple decades ago with hemochromatosis.  Odds are very very high that is what I have too.   It is a genetic disease that "runs" in families, i.e. it is hereditary hemochromatosis.  Too much iron is absorbed from and this damages the liver, heart and pancreas which then in turn harms other organs. The treatment is to have blood drawn to dilute the iron levels. 

A week from today I will ask my physician to first run the diagnostic tests for hemochromotosis and rule it out before proceeding on to other tests.  I have a very strong feeling that she won't be able to rule it out.   After being told that it wasn't my stomach but rather my liver that was showing some problems, I realized that the pain and soreness is where my liver probably is, not my stomach.   One of the apparent clues I should have keyed in on is that the ache and sharp jabs of pain I feel is in the back as well as the stomach.   I have about half of the various symptoms that can point to this blood disease. 

If preventative medicine was practiced in this country I would have already been screened for the condition. 

Serum transferrin saturation and serum ferritin tests aren't a part of routine medical testing. Public health officials recommend that you be tested for hemochromatosis if you have a parent, child or sibling with the disease, or if you have any of the following signs and symptoms:

    * Joint disease
    * Severe fatigue
    * Heart disease
    * Elevated liver enzymes
    * Impotence
    * Diabetes

-- from the May Clinic site

Of course if this country also practiced preventative medicine my brother might still be alive as his cancer recurrence would have been detected early enough to have surgically removed the slow to metastasize cancer before it metastasized as had been done three times before.  After he retired his "health care" (and I use that term loosely) would no longer pay for recurrent diagnostic tests. 

I'm not sure I like the holidays.  If I were superstitious I really wouldn't like them.  Bad news seems to cluster around the winter months. 

So my challenge now is to find a positive take on all this.  I'm working on it.  

• Better that I find out now than later is the main thing I think.
• I can focus on my family and get my daughter tested early for this hereditary problem before she is harmed at all.    

Helping my daughter be healthy for her whole life is the big thing.  That is a silver lining if I ever saw one, and I've peeked inside a lot of dark clouds.  

I don't know why I'm focusing on this so much.   It may not be hemochromatosis.  I guess it somehow brings me close to my brother who has been gone for almost four years ago.  I miss him so much.  I've found out that he did things I never would have thought he could have done, but then we all have things in our past which taken out of context could seem very questionable I suppose. 

So wish me luck and check back -- I will undoubtedly be talking about it as my dear sweet husband is a bit of a dunce when it comes to empathy and listening skills.