Wednesday, January 30, 2013

Losing track of the outside world

This is going to be short.  I have noticed that the pain that keeps me indoors keeps me cut off from the outside world.  Just something as innocuous as the weather that I would take for granted in the past has become somewhat unreal.  I would see what the weather was on my way to work or at lunch and of course on my way home.  Now am I am interacting with world more and more through the internet and the computer.  I have a widget in my web browser that tells me the weather.  I am not sure what the point of this was, other than I am aware.  Reminds of a Ray Bradbury story and not in a good way.

Monday, January 21, 2013

Cancer Scare (not me)

This week I have been fearful of the unknown in a whole new way.  My wife had some blood tests come back that may be indicative of a rare form of cancer.  This initiated a cat scan and of course the fear of the unknown.

I am embarrassed to say but my first thoughts were for myself.  I have become dependent on my wife in more than just the physical way she takes care of me.  Being sick is isolating by its nature and I in need of her in an emotional and psychological way that for me is unprecedented.

This is my third marriage and I have a few serious relationships outside of those three marriages as well  (Despite reports to the contrary I have not married everyone I have dated).  During those relationships I always kept my emotional distance from these people that I was "sharing" my life with.

My physical dependence on my wife has broken down those walls and I share my life in more complete way than ever before, I may even admit that I lean on her emotionally.  I call her Saint and she does not take it seriously but she carries the weight of both of us on her shoulders and it is something I could not do.

The results have finally come back from her CT scan and I can finish this post that I hopefully entitled cancer scare is just that a cancer scare.  A wave of relief has passed over us both.  As always life goes on but I will certainly make sure that when I can spend time with her that I will slow down and enjoy every minute.

Thursday, January 10, 2013

Sick Room, Sanctuary, Prison

I the room I spend most of my time in has been modified with the generous help of one of my cousins and my beautiful wife to be as comfortable for me as possible.  There are some nice pieces of art on the wall, my five year clock from another life when I was able to work, a comfortable chair and a couple of computers to round it out.  If I had to spend time in one room this would be the room I would want to spend it.  Of course there is the caveat from a previous post that this was to be the nursery for a baby it does not look like we will have, but I think I was enough of martyr about that previously.  Sometimes the comforts I have surrounded myself begin to close in on me in a claustrophobic kind of may.  Sometime they slowly close in and smother me like the end of One Flew Over The Cuckoo's nest, you know that kind of slow smothering that only a friend can provide.  If it is a prison at least it is of my own making.

Tuesday, January 8, 2013


I have been off work for four months now.  It is physically difficult for me to leave the house.  Getting dressed, stairs, getting in and out of cars, etc is all difficult and some days not possible.  Since I have settled down with my wife I have not been the most social person even before I became acutely ill.  I have come to realize that I am a much more social animal than I had thought.  The interactions everyday I had at work our definitely missed.  I even have come to realize that several of my work friends were in fact just friends and are truly genuine and caring people.  The interactions I have online our good but not a substitute for seeing people.  When people come over for a visit I realize how thirsty I am for that live face to face interaction.  I am definitely grateful when people come and hang out. 

Monday, January 7, 2013

Twenty Resolutions

resolution #1 stop threatening to stab people
resolution #2 break the fourth wall as much as possible
resolution #3 eat more Kale
resolution #4 invent more dreams
resolution #5 find out why I am fascinated by chickens and monkeys
resolution #6 find the art in illness
resolution #7 see if resolution #5 and #6 are connected
resolution #8 I forget what 8 is for
resolution #9 take my only chance at going pro
resolution #10 even though it is late be sure to deliver all Christmas hematomas
resolution #11 read a book, again not stabbing related
resolution #12 reflect on the meaning of the universe while burning some incense
resolution #13 lucky 13, let the love of those around sooth the sorrow of the lost that was never had
resolution #14 watch Scrogged with viscous intent
resolution #15 get a massage from Harvey Levin
resolution #16 Lord of the Rings marathon with Smores
resolution #17 Get more clocks, and make sure they are loud. Not stabbing related
resolution #18 address my Ebay monkey purchasing problem
resolution #19 bring back wide ties
resolution #20 the last resolution for the year try ground up cool ranch Doritos as a spice

Friday, January 4, 2013

Twitter is a distraction / Finding the Art in Illness

I have found that talking to one self under the pretense of tweeting is quite cathartic.  Today is a new day and and the bounce back begins.  I am in a much better place mentally and spiritually than I was a few days ago and the body will do what it does.  I have begun to think of resolutions for the new year.  Perhaps the one I will do my best to follow is to find the art in illness.  I have read and seen the work of others but I hope to find the art in my illness.  I have received some criticism in the past for calling it my illness.  My ever progressing definition of my self must include this illness.  If tomorrow I woke up and was healthy as a horse being sick for the past three years has changed me.  Perhaps finding the art in this will help me internalize this experience and not necessarily move beyond but allow me to move while being held in it.  

Thursday, January 3, 2013

The end of 2012 of milestone

Sarcoidosis is an unknown disease and the future is always uncertain.  This is true for everyone of course but sarcoidosis has made me more aware of this in my own life.  What is the point in this self indulgent rambling?  12/31/2012 was a milestone for me in that it was the first time since I was a child that I needed someones help to go to the bathroom.  This could be the a sign post in the slow demise of my independence or it could be a one time event.  I always seem to be able to come up with a positive outlook for the future and move on from such milestones but at the moment I do not see that future.  

Wednesday, January 2, 2013

Cushing Syndrome (oldie)

Was I the only one disappointed that Cushing Syndrome does not make you look like Peter Cushing?

Tuesday, January 1, 2013

A new year (warning not as happy as most posts)

I have a disease that has no known cause or cure.  I try not to look further into the future than a few hours, to see my wife smile.  When March roles around in 2013 it will be three years since diagnosis and acute onset of sarcoidosis.  I would like to think I have gained some kind of insight and perspective on life since it became apparent to me how close to meeting my maker I am at any given moment but I do not know if that is true.  I have come to value the smiles of children and to see my friends happy and well.  For myself it is not easy, in the morning I wake up in fear and wait to see what the pain level is.  I have been house bound for past couple of months only leaving the house to go see doctors.  With the help of my wife and family I have converted the room that was to be the nursery for the baby my wife and I were planning on having into a sick room.  It is as comfortable as it can be for me in the physical sense but sometimes the ghosts of Christmas future do haunt me in here.  I usually am positive when looking forward to the possible future but sometimes the gremlins of what if do roll around in my head.  Three years of pain does were on even the brightest of lights, yes I am tooting my own horn I am one of the brightest lights.  I do rely on my faith more than I ever have before and I have to come to a spiritual peace that usually gets me through most days.