Tuesday, August 12, 2014

Your So Vain I Bet You Think This Blog Is About You, Don't You?

I thought about starting this blog off in what I think would have been a hilarious way, it would have gone like this:

Yes, that is the answer.  Yes every blog post I have ever written has been about you.

I stopped myself.  Most of my posts are just my feeling and thoughts at the time they are written and what I mean by that is I do not usually have specific intention when I write.  This time I have a specific intention so be forewarned I do not anticipate it being funny or poignant.

Three times that I know of someone has been deeply offended by what I have written about them.  Only once have my words been about the person that was offended.  Before I continue I should mention that I am guessing that this happens much more than I think and most people seethe and do not confront me, the thought of that makes me sad.  At this point in my life I would hope to not cause any unintended suffering. Alright back to the topic at hand.

The two people that I did not mean to offend thought that my words had implications that they did not.  I would like to say I never imply or use subtext when I communicate.  My mother was a master of implications and subtext, speaking with her was always a chess match and unfortunately my mother's genius exceeds my above average intelligence and she would win, at least most of the time.  I spent my childhood in a cloud of words and I never had any security or trust.  With that history in mind I have done my best not to never imply or use subtext, now of course I can not deny I am influenced by my subconscious and I can not say I never ever use them but I try, I try real hard.

I have brought my fair share of people to tears and for the sake of this I will leave out everyone I ever dated but my current wife but unfortunately that still leaves a long list of folks.  For most of my young adult life and "mature" adult life I have handled disputes by getting angry and telling people exactly what I think.  I thought this was the alternative to my mother's methods.  Getting sick and finally feeling overwhelmed to the point where I was willing to seek therapy and by getting that therapy I came to realize a few things.

First and foremost my logic hammer can not beat someone into seeing the truth.  People perceive reality through their minds and their minds often do not use logic.  To that end I am learning to take a breath and think will things be "better" after I have spoken.  Second and second most I have learned that when your only conflict resolution skill is angry yelling people think you are an asshole.  I have learned other things but those two are really important.

To all my faithful readers I guarantee this: I will not write a blog post about you that contains anything I have not said to your face, well probably to your digital face because I am homebound but you get the drift.  For all those who for whatever reason did not get the drift I say this, if you are not sure if a blog post is about you, it is not about you.  I am learning to take a breath.  I have not been a 100% at taking breaths, meaning I still have no filter and if I am mad at you or think you have done me wrong I will tell you to your face, probably loudly.



It has been a long couple of weeks

In our day to day lives the rate at which time flows is a constant and there are of course exceptions to this, the last half hour of a workday, the last five minutes of a school day, the first dinner with your girlfriend's parents, etc.

Things have been bad the last couple of weeks.  It is hard to describe what I am going through to someone who has not had the same experience.  A quick run down would be fatigue, pain, shortness of breath, lack of mobility, brain damage (various kinds that I do not feel like listing), my eyelashes are falling out, bleeding from random skin lesions, vertigo and then I will say my three favorite words, blah blah blah (there are a lot more things but I am tired of listing in general).  Any one of these items I could ignore or at worst I could probably tolerate them on a one on one basis.

Together they are greater than the some of their parts and it is not like you just add them together, it is exponential, in unknowable, like what happens when you approach the asymptote as you head towards infinity.  The experience becomes indescribable.  Most of the last two days were spent sleeping and sitting on the bed.  When I would sit on the bed I would think to myself I should move, if I could get to the shower and then to my chair I could be clean and then I could interact with people even if it is just through virtual means, but I still don't move and I am really not thinking.

I sit on the bed and I am surrounded by the oblivion that the chaos of my symptoms create.  Now that sentence was going to be the intro to something but man in my present state that seems like a really cool sentence, I am not saying it is a cool sentence I am just saying that in my present state it seems like a cool sentence.  That sentence was cool but it still lacks the ability to convey what it is like.  I glance over at the chest of drawers and these drawers are moving horizontally away from each other and I get sick to my stomach.  If it did not make me want to throw up it would be like a moving Escher drawing but it does make me sick and I still sit on the bed.

My sister came over a few days ago because I needed to sign some documents for my dad's estate.  I did get up from the bed but I skipped the shower, had my wife help me get dressed and I took my place on my sick throne.  She comes over and we are chit chatting and she tells me I do not look good and asks if it is pain?  It is hard to answer these questions but in the short answer if it was just pain I would still have a driver's license, I would still be working and I would still be doing some other more intimate things that I shant discuss here, well at least not in this post, if I really want to help people and have them relate to my experience a post on sex or the lack there of must be addressed at some point just not today.

Back to today's topic it is so hard to talk with someone that has no frame of reference.  I remember when I was first diagnosed I had symptoms but I powered through and I would go on to internet support groups and read posts from these people that lamented that they could no longer work and I would think to myself that they were weak and if they would just pick themselves up by their bootstraps and get moving they would be okay, I never thought they would be good but I thought they could be okay.  Fast forward four, geeze I think almost five years now from my diagnosis and I humbled and ashamed to think I blithely told them that studies have shown if you are just able to get up and exercise your symptoms would improve.  I ask forgiveness and realize now that I was just kicking people when they were down.

I have some great friends that come by and visit me and my spirits are always raised and smiles swim across my face from the love and companionship they bring when they visit.  The friends that I have know me and it is great to be known.  My family has never been close and we as a family have had it pretty rough and this goes out from my immediate family and includes aunts and uncles and cousins and such and I know that when some of my family comes over they look at me and think he should just pull himself up by his bootstraps and just get up and nothing I can say will make them understand and the only way they could understand is if they shared the experience.  My family and I are not close but that does not mean we do not care about each other and my parting thought is I hope my family never understands.



FOOTNOTE:  Well not really, what I am adding here is that my friends and I have trust and this flows from knowing each other well.  Family and I not so trusting and mainly because we do not know each other well..  It is hard when someone that you have not spoken to in years asks to trust them or even someone that you talk to once or twice a year, it is hard to trust them as well.



Tuesday, July 29, 2014

I Write The Blogs That Make The Whole World Sing

I wrote this blog a while ago but a visit from my cousin (this blog post is definitely not about them) has prompted me to post it.

I have written this blog once a week for nineteen months religiously or close enough for the girls I date. That line makes me nostalgic for the misogyny of my youth but I will try to keep the regressions to a minimum today. I did have other blogs but I did not attend to them with any regularity but this blog, this blog I have written a post every week for nineteen months, give or take a week here or there.  I am pretty sure I only missed one week but in case I was wrong I did not want to give some anal retentive reader something to be anal retentive about.

In the course of time it has gone from a blog that only about twenty of my "Facebook Friends" a week read to a blog that is now read by an average of sixty different people every week and out of the sixty only about ten of them come to the blog through Facebook.  I wont bore you with a further drill down of the readership of my blog other than to say sometimes I do get as many as one hundred unique visitors a week, my vanity is appeased.

What is the point of the first two paragraphs?  Wasn't I supposed to include a thesis somewhere in the beginning somewhere?  I don't know, I consider it a great leap forward for me that I now proofread my posts before publishing.  A point, maybe not the point, but a point is coming next.  I write this blog for personal catharsis and I hope that my catharsis can help someone going through a similar circumstance.  I have said that before but that is not originally why I started this blog.

I started this blog because my family has a problem with communication.  I would tell one relative my current status and just like the children's game telephone by the time I would hear it back from a different relative it would be distorted, sometimes it made me laugh and sometimes it made me cry.  I am hesitant to bring up the second reason but I have always been honest in this forum on if I start writing in regards to who might be offended this blog would go from a source of relief to a source of stress.

The second reason I started this blog was also because of my family.  My family can be passive aggressive, martyrish, and narcissistic and I don't mean that in a good way.  I will just come out and say it, sometimes my family can be assholes and I don't mean that in a good way either.  There is a lot of anger here and I am a little apprehensive about tapping in for fear of what might come out.

Let us just start with a few facts, hopefully I am sounding like a dickhead, that is what I am going for.  Fact one I am not sorry I did not call you personally to give you an account of the latest happenings, I only have so much energy and making sure some narcissist is satisfied that I told them and not someone else about my health travails or at a minimum told them first or at least the same day is often not possible.  In person and on the phone I have had family accuse me of being a liar.  They just can not accept that I did not have the energy to call them, how is it possible I did not have the energy to call them, it is possible and I would appreciate some empathy and understanding (I come by being an asshole legitimately, I come from a long line of assholes and some days I am surrounded by assholes).  What I get is an attack that my lack of calling and communication is a intentional slight and how could I attack them, how could I do that to them?

It did that because I do not care about, your fears are correct, I do not like and I have never liked you.  My entire illness is a fabrication in order to give me cover while I continue to slight you at every turn.  I hope this admission gives you some peace.  Sidenote: there might be some that would say this blog post is passive aggressive and why didn't I tell people directly?  In response all I can say is if you think this blog post is about you it is.

PS If you want to know how I am doing send me a message or call and stop being a dick.

Tuesday, July 22, 2014

Not A Passive Aggressive Letter To My Sister

This post is not passive aggressive, other than in the obvious way that I am posting on a blog instead of talking to someone in person.

This is to my sister (not the one in the hospital).  I told her that I was not going to write another blog post about her and at the time I said it I had no intention to do so.  I am going to switch it up here and write an open letter to my sister.

Sister when you were last at my house you brought up a blog post that I had mentioned you in.  It was from quite a while ago and was surprised that it affected you that it was still in forefront of your mind.  When I sat down this morning to write a few things that had been simmering since your arrival and departure into and from the city of salt, I wanted to communicate with you and it seemed obvious that it should be a blog post because it gets through to you.

My first impulse was to dissect every slight and wrong that I felt you had committed and get deep down into the semantics and have a really satisfying fight/argument with you in a public forum so neither of us can place a spin on the results.  I did indeed write two blog posts prior to this one that were angry and full of detail and then all of the sudden I wasn't angry anymore.

Dad is dead and mom and I are not far behind him.

I have to prioritize now and being angry with you is a waste of time for us both.

 I do not know you very well.  I am six years younger than you and was only twelve when you escaped our family.  That is how I think about you going away to college when you were eighteen and I am in no way implying that is how you feel but that is how I felt/feel.

As adults I would not claim to know you, that does not mean I do not love and care about you as my sister but we have not had a relationship as an adult.  From my perspective this is not an attack just a statement of fact.  I will not assign blame as to the who or why that is the case just that it is the case.

I love to exaggerate to tell a humorous story, I like to see people smile and feel like I am a positive part of their lives.  I do not exaggerate about my health, in many ways I am still in denial about how the illness has effected me and that being said when I talk about my health no matter how bleak I am sugar coating it for myself.  I do not know the a word that means the opposite of exaggerate but that would be what I do about my health.

We are not close, you do not share your secrets with me and I do not share my secrets with you and neither of us is going to live long enough for that to be the case but what could happen going forward is we set aside our preconceived notions and stop expecting each other to understand the meaning that is implied by the words we say, we do not know each other well enough for that.  Lets treat each other like the strangers we are, I am not angry twelve year old and you are not a awkward eighteen year old theater geek.  That is what we where the last time we were together for any amount of time, that was thirty years ago and I am thinking we both might have changed since then.