Are We There Yet?

Are We There Yet?
This is the sign that is over the front door of Aileen's and my house, our home, going OUT. Meaning that when someone leaves our house they are going into the ACTUAL Mental Ward.

I've always felt that way. When it is considered how much ugliness and killing and hatred there is in the world today, it actually makes perfect sense that this sign is over the door going out of the house.

Because that's where the real mental ward is.

Monday, February 25, 2013

Playing Racquetball With My Mind...

I had been a lot of things in my life.  When I was a child living with my parents on Fairfax Road in Cleveland Ohio, there were some who said that I was a spoiled brat.  And I used to think that I was.  At least that's what I believed for a long time.  But then a family member meeting one of the Maschke family, before my darling wife Aileen died, explained to me that from their perspective, that I wasn't a spoiled brat at all.  They felt that of the two of us, meaning my sister Mary and myself.  That it was Mary who was more inclined to be selfish.

But I can't help admitting or feeling that a lot of my childhood behavior was because I was actually born so sickly.  Because when I was three years old I had spinal meningitis.  I also had a bout with scarlet fever and the mumps measles, chickenpox and a few other things, I guess.

But additionally, I believe that what I would consider my being possibly a brat when I was a child had a lot to do with my parents drinking.  And their behavior.  Because there was a lot of fighting.  Meaning arguments.  There was never any hitting between them.  But the arguments were quite sizable.  Meaning, rather aggressive.  To the point where I used to have nightmares, about the.  I think I even have one associated from that timeframe.  Even to this day.

My point is that there was only one time in my entire life.  When I really did anything dishonest meaning something openly so.  I think I was six years old.  And I saw this candy bar at the local drugstore.  So, I simply reached out and took it and then I left the store.  I remember inside myself feeling that what I was doing was a bad thing.  But I couldn't explain that feeling.  But within a minute after I got outside of the store.  The owner who actually was a very good friend of the family came out and saw me sitting on the curb.  So we sat down next to me.  And he asked me for the candy bar.  And I gave it back to him.  And we talked about that.  I will never forget that memory.

But that was the only time in my entire life I ever did anything dishonest openly.  But with my mother and father life was really one of the strangest things you could ever imagine.  In our modern world.  We talked about lying.  And we talk about how dishonest so many people are.  Living with my parents was one of the most emotionally strenuous experiences.  I could ever imagine.  Lying in my household was like a way of life.  These are memories I haven't thought about in years.  Part of my somewhat antisocial behavior is I guess what you would call it.  When I was a young child from perhaps five until 12 or 13.  I think 12.  12 was a very bad year.  And I will explain that in other Journal entries.

During those years, as I think back to the memory that I'm looking at.  And then I see what is around you.  The recollection that I have is that one of the emotions I was feeling when I was around other kids in the neighborhood or at school or other adults was not an expectation that they would lie but having a kind of difficulty trusting.  To the point where when I actually did encounter someone who was really honest.  My emotions just overflowed.  Because it's not what existed in my house at all.  And so, that coupled with my parents being extremely wealthy and coming from this somewhat famous political family in the United States.  Well at this point I had no idea of course of who my mother was.  I didn't even learn consciously in any way that I was even adopted until the third grade, which was perhaps when I was seven years old.  I think that's right.

So consequently, the difference between being with my grandmother and my aunt Helen was my father's sister.  And they lived not far away in the same suburb called Cleveland Heights.  But they lived up at Fairmount Circle.  Which was a sickly perhaps a couple of miles away.  But the difference between being over with my grandmother aunt Helen versus being with my mother and father was unbelievably stark.  Because with my mother and father there were nothing but games and deception and never really telling the truth.  Unless, there was something to gain by doing so.

But when I was with grandmother and aunt Helen.  It was just the opposite.  Not completely but quite very much so.  Because they were all about honesty.  And that's one of the reasons that there was a constant clash going on between my grandmother and her son of my father.  And especially between my father's sister, aunt Helen and my mother.  My aunt Helen and my mother took the concept hatred to a level that cannot even be conceived.

So this was a comparison.  This is a kind of situation where I'm in two worlds at the same time.

People want to know why I'm different.  Now I'm going to tell you.  And the only one who I have ever told this to in my entire life with my darling wife Aileen.  I have never once talked about what I'm about to say.  I have talked I believe about a couple of the details.  But that's it.  So growing up with my grandmother and my aunt Helen, who I would see at least twice a week.  For whatever reason.  And it wasn't for 10 or 15 minutes it was usually for a few hours.  And when I was five years old.  My first impressions were that aunt Helen was virtually a complete alcoholic, addicted to pills and not really doing very well.  Grandmother was stoic.  Grandmother probably should have been my mother.  So, the experiences regarding being with MS compared with my father are numerous.  So I will of course talk about some of those definitely.  In other Journal entries.  But they comparison was so stark that my reactions at five years old were that what was happening in my home wasn't real.  And if five years old, I didn't even know how to explain what I was feeling.  But that was the impression.  That what was going on with my mother and father was not real.  Like a said, the arguments were really out there.  There were times when my father was actually locked out of the bedroom.  There were times when they actually separated for a while.  Not more than a few weeks, but they did.

So, one of the things that took place of course was my grandmother taught me solitaire.  And that is a completely different story.  Because it's just beyond amazing.

But like I said, the other thing that was happening was that my aunt Helen was literally just devastated with alcoholism and addiction to various medications.  I remember at five years old that I had seen father doing the same thing.  Not with the pills.  So there was a certain amount of familiarity with it.  So, my grandmother and I were occupied either playing solitaire or a number of other rather interesting and rather incredible things.

But by the time.  I was almost 6.  One time when I went over to see grandma and aunt Helen and Helen was lying in her bed in her room.  And when I came in to say good morning.  She simply looked up over the covers and said, please don't think small of me.  And so I sat down the edge of her bed and I asked her what all this junk was that she kept swallowing.  Meaning, the liquor and the pills.  And she started to explain a little bit about what the pills were which didn't make a lot of sense.  But I knew they were not good.  So, I then said, if I recall or I said something about her drinking saying that I saw my dad and my mom doing that all the time at home.  And I think the conversation went in the direction of my telling her that she didn't need to do this to her so.  Or, I think before I said that I asked her she felt good or was enjoying herself is, I think I said something along the lines of how my dad always seemed really like he was happier after he was drinking this junk.  And I may have even said when he got drunk.  But I'm not sure about that because there was an event where I used that word at the dinner table one time that was rather funny that happened.  I guess about a year and a half later.

But that's what I was saying to her and the really incredible thing is that by the end of that conversation she had me take all those pills and throw them in the trash and to take off her bottles of liquor and dumped them in the sink.  And she used to call me Mickey but in the French name of Michelle.  Because aunt Helen was fluent in a number of languages, and one of her favorite countries was France.  And I would always referred to her in the French expression for aunt Helen, which is too hard to say and have this speech monster get correct.

So really what happened was that during the next six months.  I was over there instead of twice a week almost 3 and sometimes four times a week.  And as a result.  And Helen completely got sober and got rid of doing pills.  Which lasted for years.  And it was so easy to be around the it was so easy to ask questions honestly.  Because you couldn't do that at my house.  So I learned a huge amount from both environments.  But in my parents house, as I think back to that time and then move forward in the memories.  I really do see that a certain amount of my antisocial behavior was coming directly from this whole environment with my parents of conflict combativeness deception.  Lying.  And before the operation I don't believe any of my antisocial behavior was violent as much is more physical like being the class clown.  Or having a knee-jerk emotional reaction to a teacher who might sound like my mother at home or my father.  And conflict within myself being around girls students in school.  Which I believe actually, according to my grandmother was part of my Transgenderism even at that age.  But grandmother didn't believe that there would be any way of actually proving that.  But it was her gut feeling.

And as I said, when I was eight years old my grandma and my parents had this big huge argument about my Transgenderism.  Although that was not even a word at that point.  And of course, it was never discussed.  At least until I was 12 years old, and I had more visible signs.  Well the point is that after I was in the hospital.  That whole emotional base basically changed.  The kids I had gone to school with were from the more affluent homes.  They were upper middle class and upper class.  Yet in the hospital.  I was confronted with children of every single walk of life and every conceivable economic strata.  And because of everything that went on during that year.  I absolutely became dedicated to trying to find a way not to let children have to go through what I saw of children going through during that year.

To my recollection, I believe that prior to my operation I was for the most part, if not totally and completely a pacifist.  But I was antisocial and there were arguments.  Which I guess you might call fights, but I don't recall striking back.  And I may be wrong.  But I don't remember doing that at all from third grade on.  The earlier memories of our another story and somewhat strange.

Now, part of what I learned from my grandmother was just absolutely beyond incredible.  And furthermore, my instincts were developed mostly by amazing men and women and children throughout this entire country.  Most of whom either didn't have a lot of money, but they had no money being important was really their big goal.  And they weren't famous, many had no or very little education.  Some didn't even have homes.  And yet they were all some of the most intelligent and smartest people and some of the most amazing men women and children I have ever known in my entire life.  To this very day.  People who might not even remember me, because they may have been so busy with their perceptions on me that they may not have noticed how much I was gaining from them.  For example, if you walk out of your house or where ever you are right now and walk down the street for 30 seconds and then walked back.  Your physical and all those part of your perceptions will take in a certain amount.  What we call consciously or of the physical normal perceptions are our five senses.  So when you come back and you may have only seen 20% of the people that were right there when you're walking during those 30 seconds.  But a lot more had may have been watching you if you want for those 30 seconds.  A lot more, and it only takes one thought one single image to change someone's life or change a decision or change a thought in their brain.  Because we are all watching each other.  So the more of us that Deborah badly of course, the more of us act out real badly.

Well, my point is, now that I've taken you by way of the other side of the galaxy.  Is that I developed this review strong gut feeling of knowing exactly when I was right and wrong.  It's almost a kind of instinct.  But in the case of my spinal fusion it never was.  Because when they did my surgery on September 1, 1968.  My chances of survival beyond Christmas were nonexistent.  If they had not done the operation in September.  I would have been dead by Christmas of that year, because my spine was collapsing.

So all my life.  I've had this whole set of information based on what the medical profession has always told me what they found out how things are what we have to do so forth so forth so forth.  As a result of being a spinal fusion survivor.

So to begin with, I have to say I'm very sorry.  I have always thought and been told that the procedure they did on in 1968.  And I was led to believe then told that they had never done that procedure on anyone else.  Partially because of the extreme life-threatening conditions of what was going on with me.  Now, I found that to be substantiated to some extent when from 1968.  I finally met the very first person who had a spinal fusion similar to mine done on them.  And it was 1982.  It was in Denver.  I met two people.  Actually on the same night.  And it was in the really famous downtown bar in Denver.  And I don't want to mention the name of the bar, out of respect.  But it's the one I used to go to all the time.  I even would go there before I met my daughter and on her birthday.  I would have a little cupcake and put a picture up there and some of my friends in the bar and I would wish her happy birthday.

But I met two people.  One night, two different types of people who had fusions.  And they were both lumbar meaning the lower spine.  So, they were not the upper spine like me.  One was an artist and very solitary very private didn't like being around people much at all.  The other was a maintenance engineer for the government and was a wonderful Hispanic gentleman C. was a little overweight but not very much wonderful disposition.  And they both said somewhat different things.  The maintenance engineer said that he got through it because his wife was helping him.  And that was giving them tremendous emotional support.  But the artist said that the way he got through it was that he basically drank himself through.  He became an alcoholic.  And then he learned how to control it to a degree where each not quite as alcoholic as he was.  Partially because when they do a spinal fusion they cut normally the autonomic nervous system.  In some cases they have to cut the central nervous system as well.  But the moment that they cut the odd-numbered nervous system one of the reactions.  One of the two reactions major that comes about is that then be given to no longer have the physical ability to be addicted to anything.  Promotional you can but physically, you can't because the nervous systems have been severed.  So when they grow back, they don't grow back even when he and a lot of them are broken and so as a result.  Physically, it becomes almost impossible for you to be physically addicted to anything because the nerve connections aren't making the connections throughout your body for those chemical changes to take place.  And it's something that you would never suspect what happened.  And that's another story and a really amazing one, which I'm going to tell you in the future.  But that is one of the reactions when you cut that part of the nervous system.  So I'm sitting here with these two gentlemen, having had fusions, but now there's were in the lower spine.  Mine was in the upper spine.  So all those years I had not met anyone from 1968 to 1982 who had an upper spinal fusion.

And when my darling Leah at age 18 had the same curve and every bit of the condition I had when I was 18.  I actually went to the hospital where she had her surgery.  And one of the doctors who operated on me was a doctor over at that hospital and he was going to do the fusion.  And he assured me absolutely was not could be anything in any way like what happened to me.  This was a very private.  Extremely private.  Private conversation.  Nobody knew.  So it was discussed of what they were going to do with Leah was to use cadmium rods.  And he assured me, or at least led me to believe that was the practice.  That the bone fusions had not worked out hardly very well at all.  And they were going to be using cadmium rods whenever possible or from then on.

That's my recollection.  I cannot say that absolute fact that I can say that it's probably 99% fact.  Because we're talking about Leah being 35) this was when she was 18 and I had this really major nervous breakdown in between that time.  So let's just be real.

In any event, I never ever thought I would meet someone who had an upper fusion like me.  I didn't need another one.  When I was going to temple when my father died during the year I was mourning for my father.  What's interesting is see was actually convalescing in the very same hospital I was.  But, he was in that hospital the year after I got out.  And it was the year after I got out, the University hospitals of Cleveland took over the other hospital where I was convalescing with was rainbow hospital on the corner of Mayfield and green road in Cleveland Ohio.  Prior to that time, from 1968 and before rainbow hospital was a private hospital that was on consignment to an associated with University hospitals of Cleveland.  And it wasn't part of the University hospitals of Cleveland system.  It didn't become part of the system until the fall of 1969.

And it may have been the summer.  But I don't believe it was I think it was the fall.  And the reason I'm bringing that up is because when that this other gentleman who had been in rainbow at Temple while my dad of course had died and I was mourning for him.  The experiences that we were sharing were rather different or what he was telling me was rather different and I was very guarded.

Began when I was listening to him.  His procedure was nowhere near what mine once.  Although it was a bone fusion like what they did to me.  But mine was lethal.  Just wasn't.  What's interesting is that he had the same type of growth but not as much.  So we had a growth spurt in his legs like me.  And yet his curvature wasn't quite as severe as my.  So there was a difference.  And you must have been doing something.  Because the discussion of his pain was nowhere near as severe as my.  And he was only on the table for about eight hours.  I was on the table for 13.  He never went under oxygen tent.  He never had to use the Bennett breather.

So my hypothesis was still true.  Or, what I was being led to believe.  That what they did to me they never did to anyone else.  And when we, meaning my darling Aileen and I learned of Michael Conway, the actor who used to be on taxi.  And all of this terrible spinal fusion problems he had.  We even talked about, what I've just explained.  And actually one of the choices they gave me when they did the operation was that if I didn't do the operation.  One of the other choices was to live the rest of my life in a brace like one Michael Conway was wearing.  Which is called a Milwaukee brace.

So still even at that point.  There was never any indication that anyone really understood what I went through, because I haven't really met anyone who actually had.  And then amazingly today I met someone who actually did go exactly through what I went through and though nowhere near as serious or life-threatening.  The reactions are completely the same or very much the same not completely.  Because this person is a professional person.  So they are out there working.  But they were older when they had their fusion.  That's part of the remarkable thing.

They were middle-aged like 40.  And they and their fusion only a few years prior.  And it was a full-blown fusion just like mine to the thoracic.  Just like mine.  Which amazes me.  Because back when my daughter was 18, when she had the same fusion as I did, I was assured that they were actually going to be doing more cadmium rods.  So consequently, my reaction is of course I was very interested in speaking with them.  And they were very very cordial and polite.  And there was a tremendous amount of common experience.  And when the conversation was over I realized that my thinking was obviously being colored by medical professionals who are probably looking at the worst-case scenario.  Yet the common experience between this for example is that yes, if you fall down.  You die.  And there is never ever going to be any muscle on your back for the rest of your life.  Plus the nerve damage.

So on the one hand, I am just beside trying to figure out how medicine could continue to be.  What I consider so barbaric and I'm not even sure that's the right word.  When my daughter who had a really bad fusion like myself in exactly the same place.  Simply got cadmium rods.  And of course I didn't even mention that.  At least I hope I did not.  I don't think I did.  So obviously I'm wrong.

And I'm sorry.

If it had not been for my grandmother and my aunt Helen, who I only saw during the year I was convalescing after my surgery.  But who I spent so much time with before, I don't even know if I would've survived.  But it was from my grandmother and my.  But I learned honesty.  My father of course, would always tell you to tell the truth.  But would never expect you to do so.

So honesty became almost like a lifeline to me.  When I got out of the hospital.  It's one of the reasons I wanted to go to SAS.  The pressure cooker at home once insane.  So honesty is been.  Just like one of the most important things in the world.  And while I my deal with this honesty, all throughout anything happening around me.  I wouldn't do so inside myself with those closest to me.  That of course is a reaction directly to what was going on with my mother and father and in their household as compared to my grandmother.  And aunt Helen.

So consequently, here I am and I suddenly realized that there are probably a huge number of people out there who are fusion patients of one sort or another, who are actually very much like what I have gone through and what I am.  So I suppose that the uniqueness of my own situation beyond my own individual personality has to be potentially life-threatening nature and whatever circumstances my mother brought forward into me.  Which I then subsequently brought forward into my daughter Leah.  Where she even asked me at one point about her son who is now three or four.  And I told her she would know by probably 12 or 13, because at that age.  We both meaning Leah and myself began to have a slight swayback condition, which is released in honest was a precursor to the scoliosis.  But she is really aware.  She's been through it.

So, I was wrong.  And I'm sorry.  That is the long and the short of this.  There are things that come almost instinctively, to me like condition is taking place in one place or another.  And that's another story altogether, which I'm hesitant to talk about with all of the religious conflict and polarization that's going on in the world.  That doesn't seem like a real wise idea.

However, I will probably talk about some of that.  Because those who actually understand will immediately get the message.  Those that don't will probably not understand and completely misinterpret.  But so what?

And then what is also amazing is I put up this article earlier today on the history of Transgenderism.  Part one.  And I thought it was just on the legal.  I thought was amazing.  I'm even going to put it as a link on the page because I think it is absolutely incredible to read how gender jumping so to speak, which is a term I use.  Gordon gender exchange.  Was going on on the way back to 4000 BC.  That's incredible.  And I think at the very least that anyone takes a look at that will really get an eye-opening education.

But I'm wrong.  They are still doing bone fusions.  No wonder I don't trust medicine.  The only other time I've ever seen anyone become so nervous talking about their pain and how it is so similar to the person they're talking to was this one single time in my life.  This gentleman was just as guarded as I was.  Meaning the pain was almost identical.

So, this is a very mind expanding series of impressions.  This will be interesting.  I can feel those little gears inside my head.  Just accelerating.  It's okay.  When I was in high school.  At one point.  One of my fellow students told me to go sit on my brains.  Meaning, I believe he was talking about my or around.  But in reality, instead I went over and stood on my head.

Life was that way.  So this is a new battery of information.  I'm so glad.  Of course I probably would have referred being strapped to the side of a rocket pointed at the sun.  Just kidding.  It's gross.  It's expansion.  It's uncharted territory.  Now were talking.  Life isn't strange enough.  Right?  There's not enough trees in this dark forest.  Right?  Let's throw in some more.

I do love bumping into trees.  Every time I turn around, there is another one.  It's amazing I don't have bumps all over my head.  No problem.  I can do this.

See mistake to me was the absolute most vital thing in the whole world.  It's still lives.  And it became that way as a result of my grandmother and my aunt Helen.  Along with Georgia Myers our black maid.  But also always amazing men women and children who I met throughout my life.  But the impetus was when I was five years old, being around my grandmother and my aunt Helen as compared to my father.

So, with Aileen is alcoholism, which she was battling as a result of having been brutally raped three times and losing all three of her children with one dying only 45 minutes after she was born in Aileen's arms.  And having been a domestic violence victim, were she had a scar all across the over 400 where he had thrown her across an entire room.  So all these things and yet she never missed a day of work.  And she was conscientious you wish you worked hard and she studied and she continued her education several times during those 18 years.  All the while battling alcoholism, with all these other things going on inside.

My negative reaction was to the lying.  And part of it is because when you are alcoholic or you are addicted to something.  However slightly or greatly there is in this honesty that takes place.  This honesty within yourself, but more so dishonest the to how you present yourself to the outside world.  Regardless of what the addiction is.  And that dishonesty was identical in one degree or another or one type or another to the various environment of dishonesty that existed at home with my mother and father and in their household.

As I've said before, Aileen was diagnosed with liver cancer on March 21, 2010.  But the very week before that, on the weekend before March 21.  I said to her at one point that I love you enough to die, but I don't want to have to do that.  You don't have to do that.  And when I said that I had no idea in any way.  There was anything wrong with her and if she knew she was not letting on that there was.  Because the only thing she said was that she was getting sick to her stomach.  Although I knew something else was wrong.

In any event, it was the façade or the fronts the presentations that were different from what was actually going on, which you might call lying or pretense.  But that didn't really matter because I still love her more than anything in the world, which I do now.  I was and still am prepared to do anything in the world to protect her no matter what.  Because we didn't say we love each other until death do us part.  We said until the end of time.  Forever.  We both knew we had feelings of knowing each other long before, what we may have been right now, whether those are just impressions or anything else, is another story.

So in that regard, honesty was incredibly important to both of us.  Which made her out always him a stumbling block not only for me but for her.  And for us.  But our love continued.

The point ii because honesty is so important to me when I'm now discovering this entire huge amount of new information.  The only thought that comes to my mind is that I'm sorry.  Because with all the information I have been given with all the different experiences that I can remember.  I just evidently wasn't as conscious or didn't encounter and thought might not even exist anyone who was the exact same kind of pain and situation going on in their body as I had going in mine.

So consequently, that new knowledge brings with it a lot extra new information.  The first update mindless that I felt it was important to clear the air.  That way I can see more clearly.  All this information taking place, which of course will make it easier to understand and to process.  At least that's my hope.

And life just goes on.

Thank you very much for listening.