Tuesday, June 24, 2014

Wife and Weakness

The first thing you read when you get some random illness that has no known cause or cure is that you need to avoid stress.  After four years of being ill this still escapes me.  I will take some of the blame, it is after all hard not to obsesses about how your body is devouring self and laughing in the face of modern science but it does need to be put aside, there is still a life left to live, right?  That being said this post is about the world, you know that thing that keeps spinning and as it turns out my wife might just be my world.

My wife has become the center about which I rotate.  Copernicus was wrong she is the only star I know of.  Sickness is isolating but I will never be alone because my wife lives her wedding vows.  My wife and I still need interactions outside of the marriage, The Turtles were quite prescient when they said two is the loneliest number since the number one.  I have encouraged her to get out and enjoy her friendships and she has a lot of friends after all she is quite likable.  She does not like to leave me alone, it is hard for her to enjoy herself when she is worrying about me.

I encourage her for selfish reasons, if she does not get time away from me despite her love and her vows I would become an anchor or a small black hole. I fight everyday to be a man she can love and is worthy of her love, because for certain I am not the man she married. Over the past four years it has been hard to become someone new and remember to strive to be someone that my wife would want to love.  We both mourn for the man I was but we can not mourn together.   We are mourning the same man but truly we are mourning two different men, it is hard to explain but somehow the man my wife is mourning was a better man than I was, I admire him greatly.

I miss having strength.  Without strength you must rely on people or if I may paraphrase my favorite playwright Tennessee Williams I now must rely on the kindness of strangers.  Now that I am weak I have given much thought to not having strength and at this point I can say that being physically and mentally strong gives you an illusion of security.  When I was a child I never felt safe and I wont bore everyone with my sob story because it is really no different than anyone else I grew up with.  I am sure everyone knows someone who had it rough in the same way I had it rough.  The one thing from my childhood that keeps me going is that one guy that slept with his sister, anytime the shit gets real bad I always say to myself at least I am not the guy that slept with my sister.

My childhood was like an after school special about abuse and as I grew up and became physically strong no one abused me anymore.  I often joke I was raised in a Skinner box but that is an attempt at humor, truthfully in many ways a Skinner box would have been preferable to what I had.  At the age of twelve I had a growth spurt and reached the height of five foot ten inches tall and could pretty much beat the shit out of anyone or at least use my size to make people believe I could beat the shit out of them and the abuse stopped.  It might have stopped because I was no longer a cute kid anymore but in my mind it stopped because I was strong and able to defend myself.  At the early age of twelve being strong and defending myself became a large part of who I am.

Now I am weak and with weakness comes dependance or I should I use a less loaded word and say I am now forced to rely on people.  I beat my head against the wall for four years denying my loss of strength but eventually I became so weak that I could no longer beat my head against the wall.  In more concrete terms I have been sick for four years and three months and during the last three months I have made a cease fire with the reality of my weakness.  Part of the terms of the cease fire are that I must accept that I am no longer strong.  With that there has been some Pink Floyd like screaming and falling down the spiral abyss of depression kind of stuff but those are the last throws of the strong man dying or should I say the strong man realizing he has been dead for four years.

There are days of peace now.  Days I see the beauty in my wife doing things for me and I those words are inadequate to describe the fairy tale like experience it is to see someone love you and help you and care for you and keep the union of our lives together.  You ever see that movie Legend with Mia Sara, Tim Curry and Tom Cruise?  If not you should it is a brilliant movie by Ridley Scott that still holds up today.  Anywho there is a moment that was filmed with a soft lens and some Vaseline and we see Mia Sara reach out to touch a unicorn and it is beautiful and it is a transcendent moment.  There are days in my weakness where I reach out to my wife for help and it is beautiful transcendent moment and we are one.

Side note:  I am aware of the similarities between Adam reaching out to God on the ceiling of that church, it was intentional.

I am not sure that last paragraph said anything or that it conveyed what I wanted.  I want to clarify a couple of points.  First point of clarification there is beauty in being weak and needing someone.  I did not fully appreciate the love of my wife until I became weak, when you become weak and you are willing to accept help you and become open.  When I first admitted my weakness and asked for help with no pretense I was struck down like Saul on the road to Damascus.  I was struck by the beauty of my wife and the light surrounding her love.  This is an inadequate simile but it really can not be described in words, it was a moment of transcendence.  I have learned to be grateful for help instead of resentful, well at least for the most part.  Sometimes people can be a real douche when they are "helping" you but today remember how beautiful it is to have people love and help you.


Wednesday, June 18, 2014

Drugs? New Drugs? New Diagnosis?

I wrote another blog post today which seems to be my pattern lately.  I finish at least one blog post and then decide I would like to communicate something else and it has happened again today.  I wrote a nice blog post about how shitty things were for me on a daily basis, kind of a day in the life kind of thing.  I wake up and things are shitty blah, blah, blah.  My thought process was I still have not talked about sarcoidosis lately and given and update on the drugs I am taking/have taken and the general course of the disease as of late.  You know that whole trying to help your fellow man by sharing your experience.

Today that did not feel right.  As I have discussed in the past, besides the damage my brain has taken from sarcoidosis and the drugs that I take for said sarcoidosis I also am emotionally not the smartest cookie.  I had an emotionally stunted childhood, I mean I wasn't raised in a Skinner box but in some ways that might have been preferable but anywho that is for another post.  Hopefully I have painted a picture that I am not sharpest crayon in the box when it comes to understanding people.

I have started taking a new drug (new to me) from a new rheumatologist (new to me) and it has been kicking my ass in several ways.  My brain has gone from firing on all 8 cylinders to barely coughing by on 4 (is that realistic, would an old V8 run on 4 cylinders?  I think I have done it by my brain is mush and I do not remember).  Next I feel as though instead of experiencing life on this earth under the normal gravitational force it has been tripled.  Everything has slowed down and not in good Matrix kind of way like I can dodge bullets but more in a I am animal that chews its cud and can not process data quickly enough to respond to my enviroment kind of way.


The first day I took this new drug I slept for twenty hours and now that I have been on it for a little while I am finally able to stay awake for a little while with of course the continued aid of my narcolepsy drugs that I have been taking for the past few months.  Now at this point you might be saying after four years of being sick why are you even trying a new drug?  The answer is simple, the new Doc thinks that sarcoidosis has triggered fibromyalgia and the new drug is for fibromyalgia.  For the record I think she is wrong and I think that my sarcoidosis specialist and neurologist were correct in diagnosing small fiber neuropathy with some idiopathic length dependent polyneuropathy just for kicks.
Now in true Talking Heads fashion you may be asking yourself, how did I get here or maybe more to my point why am I taking a drug for disease I do not think I have?  Desperation?  A little bit, yes I can admit that I am a little desperate.  After four years of being sick combined with the overall negative trajectory of the illness, yes I am a little desperate.  Of course you know I will bounce back and my faith in God will kick into overdrive and I will regret having sworn but not enough to go back and change the blog post but in the meantime things have been rough.

My sister just got out of the hospital, pain has been my alarm clock, and sometimes it is hard to see the horizon when you are down in a valley.  Some more stuff to make you feel sorry for me, my mom is old and lives in another state and I worry about her and I feel helpless that I can do so little to help my sister that just got out of the hospital and I have said it before but it bares saying again, I would give almost anything to give my wife a moment of peace.  I wont go on and on about my wife but she certainly has a hard row to hoe.

I have always said do not hope for anything, just do your best to enjoy what each day brings but let me just take this moment to say...I would not mind if my ass would stop sweating.  Had central AC installed and it turns out I am not hot I am loosing control of my autonomic nerves, seriously when you have goosebumps because of how cold it is but you still have swamp ass, that is no bueno.  I could use a little break.

Tuesday, June 10, 2014

Normal Truth (This is another of the blog posts I wrote while I was panicked a few weeks back)

I have started writing this blog post three different times with three different titles and the panic seems to be good for one thing: writing.  This first two blog posts I wrote were pretty good and they were completely truthful and represent part of me on the page but in a sense they were a lie.  I am confused and I want someone to explain everything to me.  Upon reflection I am scared and I do not want to know anything.

I will get to why I am scared later, actually I can't say that, I do not know whether I will get to it at all.  I have written two complete blog posts without saying what I thought I wanted to say and without questioning what I wanted to question.

Last week panic had built to impending sense of death sitting on my chest and staring me in the eyes level.  There is a movie called The Unbearable Lightness Of Being, this was the unbearable weight of irrational fears coming down on my head like being under the ocean at 9 atmospheres of pressure.  Truth right now I am trembling as I write this.

I have flirted with panic all day, it comes slowly like boiling a frog but turning the temperature up slowly so the frog does not notice.  At this point I have just realized I am in a pot and the water of panic is bubbling around me and I can not breath and I am almost drowning.  The fear is going to reach from the deep like Cthulhu and pull me down.  I am taking shallow breathes when I know they should be deep.  Everything is tenuous and I am scared.  It is like being trapped in a web from one of those crazy spiders from The Hobbit.

Last week I deactivated my Facebook account.  Every message, every notification seemed like a tentacle from Cthulhu pulling me down to where the sun does not penetrate (I hate to use the same simile twice but Cthulhu seems to be an easy way to convey my dread).  I felt I could get a respite from the panic by deactivating my Facebook account.  Facebook is the way I get 80% of my social interactions.  Sarcoidosis limits my ability to leave the house and hence the alarming statistic of 95% of my social interactions are online has come to light.

The weight of interacting with everyone I know felt like someone had hamstrung me.  I felt I could get some control over my head if I deactivated my Facebook account and I did.  My last action before I did was to message a friend of mine that I had reconnected with other ways for her to contact me (My email, phone number, and snail mail address).  They have been supportive in a real tangible way and I had found that conversing with her always increased my peace quotient for the day.

Post Script

I went ahead and published this today for a couple of reasons.  Reason number one enough time has passed to give me distance from the events and I feel more comfortable sharing them.  Reason number two and some people might call this the real reason is I am having a hell of time getting what is going on right now and how I feel about it down on "paper".  It might also be stated that what is making it to "paper" is not the kindest stuff I have ever written.  Having emotions can really suck.

Tuesday, June 3, 2014

My Sister Is Sick (Can God give us more than we can bear?)

I don't talk about my family a whole lot.  My dad has been the exception as of late because he died and I know he is not going to complain about what I say.  I have not mentioned my sisters much.  I know I am the king of TMI but I have always done my best to respect my sisters privacy.  I respect their privacy for various reasons but mainly because I am afraid of them but that would be the topic for another blog post.

With this post my sisters privacy be damned, well damned a little.  I have two sisters that are both older than I, one that is three years older and one that is six years older.  My sister that is three years older than I is the middle child and in fact has always been the middle child.  She is in the hospital today and has been there since yesterday.

I guess I get a taste of my own medicine, instead of people that love me worrying about me being sick I am worrying about someone I love being sick.  I am not sure if that is irony but I am sure it is close enough for it to be in an Alanis Morrisette song.  There is a great deal of angst when someone you love is sick.  There is a sense of helplessness that is overwhelming and my heart seems to want to sprout wings and flee my chest.

I have been watching Judge Judy which I usually find quite soothing but it does not seem to be able to cut through the angst.  I have been forced to switch to the big guns and to harken back to my teenage angst tools, thrash metal.  I started with Slayer South of Heaven which in my opinion is probably the finest song ever written by anyone anywhere.  From there I went to a some Megadeth Sweating Bullets, not as good as South of Heaven but I do not think any sane person could deny its genius.  I hate to be cliche but then I switched to Cliff Burton era Metallica, of course usually great for angst comforting.

All my attempts to approach Zen have failed and so I start writing this blog and throw on some Mathew Sweet, specifically his Girlfriend album because he kind of lost me after that.  At this point I am several paragraphs in and I have not found even the entrance to the road that leads to Zen and also I have not talked about my sick sister which seems like a little false advertising.


When someone you love is sick and in the hospital most people realize how fragile life is and how we should try and savor every minute.  Well I am sick and I have been sick enough over the last four years that I am aware how fragile life is, so what did I realize?  I realized that because life is fragile there is little one person is able to do to protect another person and in fact we are all helpless and at the mercy of the world and when I say that I realize I am really saying we are all at the mercy of God.

It is not really an epiphany because Mathew Sweet has a song called Divine Intervention on that Girlfriend album and all though its lyrics do not directly relate to the situation with my sister the title  does, I am awaiting Divine Intervention.  People of faith like to say God will never give you more than you can bear and let me tell you something, those people are kind of stupid and have a really superficial understanding of God, the world, and the nature of what it means for something to be good.

In essence those people are full of shit in one way or the other.  They either have had horrible things happen to them and in order to get through each day they lie to themselves and say God would never give them than they can bear or they look at the horrible things happening to someone they love and they tell themselves God would never give a loved one more suffering than they could bear and again that helps them get through each day.

None of that is the truth.  The truth is simple and only requires a leap of faith.  Everything is part of God's plan and God's plan is good.  On its face this seems like an easy thing to accept and live by and in fact the leap of faith is really just a hop from one step to another.  The leap is required when suffering is brought to your door and you must face the suffering close up and know that is good.  Suffering that may be so great that it breaks you or your loved one and that is God's plan.

God's plan may require that we all suffer more than we can bear, God's plan may require us all to break under the burden that is too heavy to be carried.  Breaking way be a good thing but I am having trouble enjoying it today.

In the end I am sure God's plan is beautiful and there is nothing but a greater good that will come from it all.  I think you need to have the perspective of God to see that, up close it looks like suffering, it looks like too much to bear, it looks intentional sometimes, it looks like evil has come to your door.  It is hard to look at things up close from our perspective here as people on earth, sometimes things from this perspective look like shit and that is when I need to remind myself to close my eyes and leap and know that some day I will have enough distance that it wont look like shit anymore and I can see the goodness and beauty that is.