Tuesday, April 22, 2014


I have started to write this blog post four different times, this being the fourth.  The first three are finished and by that I mean they convey ideas in a concise, well as concise as I can write, fashion but they are all talking around what I really want to say.  I am scared to say what I want to say and I hate that fear is preventing me from doing anything.  Is fear is going to determine what I say?  I don't know.

Sarcoidosis is a disease of the immune system.  At one point when people asked me what sarcoidosis effected I would tell them my immune system and all though that is a concrete answer most people do not have a tangible understanding of their immune systems and hence it was actually a nebulous answer.  So after a while I began to list off the parts of my body that where effected by my defective immune system.  At this point I think that most people thought of it as a disease that effected certain parts of my body rather than a disease of my immune system.

The immune system is present everywhere in your body, a disease of the immune system can effect anywhere, anywhere.

The last four years of traveling the sea of sickness have been varied.  At any given moment things may be calm and then seemingly out of nowhere the sea becomes choppy.  This next little bit I am not sure whether I have shared in the past or not but I am about to share it now.  I am sicker now than I was four years ago and I will probably get sicker every year going forward and at some point I will probably die from sarcoidosis.  I have come to peace with that.

More people than I would have expected have told me they have been inspired by how I have handled being sick.  I do not want to disillusion anyone but I do have bad days.  I have not taken a survey of everything I have posted to Facebook, Twitter, or my blog but it has been positive for the most part.  I came to that conclusion because I do not think anyone would be inspired by me if I was constantly bitching about my circumstances.

Last week was not good and this week has not been much better.  As time has gone on new parts of my body have joined in the sarcoidosis revolt.  I have had cognitive issues for a while and to be honest I am not sure how long ago that while is.  I know I was still working so probably within the last couple of years.  The cause of my cognitive problems were never pinned down.  There were lots of possible culprits from drug side effects to my endocrine system and of course maybe the brain.

I am not going to go in to all the detail about the saga of when I first experienced cognitive issues but I will touch on some highlights.  Losing what I would loosely call my mind was/is shitty and scary.  It is not like the TV show House, the cause of my cognitive issues back then were never discovered.  Then it got better to the point where I could function again and none of the doctors were really interested at that point.  I have had a neurologist for a long time because of the nerve damage caused by the sarcoidosis but even he was like it is really hard to track down a cause of cognitive problems if they are not happening right now. 

The first time I went to a doctor because of brain issues was due to an email.  I knew I had been having some trouble for a while but what figuratively drove me to the doctor was an email I sent to a coworker that was gibberish.  My coworker replied to my message that he did not understand what I was saying.  Once I read the email again it was obvious to me that something was wrong but I do not know what.  Again it was so scary and so shitty that when it got better to where I could function I was more than happy to write it off as a side effect of some drug and let it go just like my doctors did.  Anyway what are the chances that sarcoidosis would be affecting my brain?

Secret side note it is terrifying down to your bones to think that anything is effecting your brain, your brain is who you are.  It is fine to think that a disease has influenced how you think about things but nobody wants to think about a disease damaging your brain and changing who you are.

The reality of life and more accurately death is even if the odds of something are very slim it is still  possible or the odds would be zero.  It is almost inconceivable to think of someone being killed by lightening or a great white shark and the odds are so slim that most people think of it as an impossibility.  That is how I viewed the chances of sarcoidosis effecting my brain, as an impossibility.

Secret side note The Nile is not just a river in Egypt.  I may have been in denial about the effects of sarcoidosis on my brain, may have.

Get ready I am about to get to the point or in this case the question I want the answer to but first the actual events that were the impetus of this post.  I deactivated my Facebook account during a panic attack.  I messaged one friend with my email address and then without a public word I shut down my Facebook account.  For people that have not had a panic attack it is a difficult to understand.  What I felt was the sense of impending demise and doom that was crushing me.  Since I have been ill I have been close to death in a real tangible way twice and having a panic attack feels worse than the feeling of actually dying.  It is terrifying to be terrified by irrational emotions and for me it was made worse because I knew they were irrational but that did not effect how "real" they seemed.

Facebook has been a lifeline for me, a way I am able to interact with the world outside.  That day the thought of being able to see everyone's post coming through in real time and that everyone also had the ability to instantly message me was overwhelming.  I thought as though this would somehow cause my death and the thought of dying, well it is hard to describe.  Like I said before I have made my peace with death and while I am not anxious to head on out as it were.  I know death is coming for us all and for me he is probably going to take the sarcoidosis train. Those facts do not make me anxious.  Facebook's ability to convey information in real time and that somehow causing my death made me anxious.  I know that is not rational and that changes nothing.

Anywho a couple of days went by and I had returned to a rational but still anxious state and my God parent tried to get a hold of me.  I had CCed her on an email to my Deacon at one point and just assumed she had my email address and I knew she had my phone number.  The beautiful, kind and sensitive lady that she is she sent a message to my wife to find out how I was doing because she was worried.  Once this was brought to my attention another thought occurred to me, what if I was causing pain to other people that care about me by my sudden and unexplained departure from Facebook.  I realized that relationships come with certain responsibilities.

I know I am a little old to just be realizing relationships come with responsibilities but as some of you may know I had a lot of issues growing up and it would be fair to say I was an asshole for the most part until I met my current wife.  The point being that it is only recently that I have had a significant number of friends because in the past I was an asshole.  What is this paragraph about?  It is about me making excuses why it did not occur to me to let everyone know I was okay and I just needed a break from Facebook.  I apologize, there are no good excuses and sincerely to everyone who has taken the time to be a part of my life I am sorry I did not consider all of you.

Once I had this epiphany I reactivated my Facebook account and wrote my last blog post and I added a comment on Facebook that was more candid and direct about my brain damage and the panic attack than would normally be in my character.  I was not raised in a friendly environment and any sign of weakness was used against me.  It was hard for me to lay out that I was not only physically weakened by sarcoidosis but that my brain, my mind, the core of who I am had been effected as well.  That was the most difficult communication I have ever made.  I did it and I was proud that I was honest with people I had relationships with.  No more lies of omission, full disclosure.

Secret side note the following may seem like a passive aggressive way of communicating that I was unhappy with people that messaged me on Facebook, that is not the case.  From my past experience with most people when this type of question is asked of them directly they immediately become defensive and a fight ensues fairly quickly and on the other hand if I ask it in this way I find that the guilty parties often think I did not mean them and they answer.  I am not making any judgements about this behavior, it is what it is, I am sincerely trying to get answers.

On Facebook I added a comment with the blog post that although my Facebook had been reactivated to please contact me through email that I would not be responding to Facebook.Everyone probably just went I bet I know what is coming next and I am guessing that you are guessing correctly.  Immediately people started sending me private messages on Facebook and I felt like I had to respond, I know that is irrational but that is what I felt.  I communicated that they should email me that the private messaging was freaking me out.  First question: a few people stopped sending me Facebook messages but never sent me an email, why did they not email me?

Next there were a second group of people that even after I requested they email me they continued to send me private messages on Facebook.  Second question, why did this group ignore my individual message to them to stop using Facebook and to send an email instead?

I feel a welling up of anxiety at this point, like a glass of water that is just barely overfilled and the surface tension is all that is keeping that water in the glass.  I am going to continue but it is hard, it is frightening to reveal that I am vulnerable.

Anywho what follows is some of my guesses as to what happened and I am hoping that someone will tell me I am wrong because if I am right I do not like the answers.  For group one I think it is possible they did not read my comment carefully, they did not think it applied to them or they thought I made the post and deactivated Facebook for attention and they were giving me what they thought I wanted.  I will be honest I am not a big fan of any of these answers but I can not think of any other reasons.  The answer for the second group are the same now that I think about it except that since they ignored my message I am leaning towards the second group thought I was asking for attention.

Part of the reason I write this blog is for attention.  Not the kind of Munchhausen attention of people feeling sorry for me but the kind of attention that indicates I am part of the world of men.  That no matter how alone or hard the journey seems that all mankind are brothers and sisters and there is someone in India that was touched by my blog and I am part of them.  That person in India will always have that part of me and I am not alone and part of the whole.  Do I think that I will change the world with this blog?  Maybe I will change the world if you believe in the Butterfly Effect like Lorentz but I know I am not making big changes but I am just like Ringo Starr being in the Beatles, I am happy to be along for the ride and part of the group.

Secret Post Script

Everything I write on this blog is true, I may leave out the bad parts a lot of the time and that does skew it towards the positive but now I have made full disclosure and everyone is aware that chances are things are shittier than I say they are here in my blog, Hell even I get tired of my own bitching.

Super Secret Post Post Script

I have spoken with my neurologist and my pulmonologist and we are doing what can be done and as I stated before it is not like House.  I am taking massive doses of steroids and my aches and pains are fading my brain has become more spewy, meaning that a lot of stuff comes out when I write but it is crap and hard to keep a handle on.  Actual writing is still hard and in much the same way now there are just reams and reams of it to try and post.  The steroids have helped my anxiety but it is still there and it is still new and I will not be the same.  There has been damage done to the old brain but as my doctors remind me if the active disease function can be stopped the brain has an amazing way of finding new ways to get things done.

The next bit is uncomfortable.  The doctors have never been able to stop the active disease function and we have tried every drug there is even a little bit of science on.  The last time I spoke with my doctor he was asking if on the online support group I am in there had been any talk about new drugs being tried.  I have not made a decision if I am going to take drugs based on the dart hitting the dart board method of selection but even if I do... I am probably going to get sicker and sicker and I will no longer be the person you know.

If you would like to continue on with me during my final walk down the way I will always do my best to look on the bright side and to be funny and ironic and sardonic like I have always been but in a real tangible way I am becoming a sick person.  Not just in body but in mind and I can not imagine what that will mean.  We all have read Plato or some synopsis of Plato in a text book so we know self is ever changing but we usually have a pretty good idea what self we will be tomorrow.  I do not know what self I will be and honestly no one knows what self they will be tomorrow but they have the illusion they do, I do not have that illusion.

In the end maybe Plato was full of crap and Aristotle is right but you know what I am going with Plato on this one.

ADDED CONTENT I am not kicking off anytime soon as far as myself or my doctors know!

I wish all of you fifteen minutes of peace followed by another fifteen minutes of peace.  If you do not love yourself change what you can and forgive the rest and do love yourself, then love another person following much the same pattern and then think that we are all star stuff and marvel and enjoy the universe.  Things could always be worse, what if I had not grown up with Carl Sagan?  I certainly would not have enjoyed my life as much as I have.

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