Where did it go wrong? part 1

Is it because you weren't in our wedding party?  I know that I played a very special part in your wedding, but how could I?  It broke my heart to not have you there.  It broke me.  What could I do, though?  Anita is the person that I'm going to spend the rest of my life with and you made absolutely no effort to make any kind of connection with her.  That last phone call I had with you a week or so before the wedding when you asked me what part you would take in the wedding.  You called me just so you could be angry with me.  It was a week before my wedding, don't you think you would've gotten a little bit more advance notice than that?  Maybe the fact that your husband was in my wedding party and had to attend a lot of pre-wedding events could've been a little hint?  No.  You had to call me just so I would have to say that you weren't going to play a larger part in the wedding. 

My question is why?  WHY?  What did I do to deserve such ire?  I loved you so much.  It's been more than 5 years since we've been real friends and I still love you.  It's been more than 2 years since you absolute insulted and spit on our friendship and I can't stop.  I just can't.  I've tried so fucking hard to hate you.  I can't.  I fail every time.  Every time I ask your ex how you're doing I try and sound as nonchalant as possible but half of me wants to beg him to ask you to just call me once.  

I don't understand how you can be mad at me for not being included in my wife's wedding party when you probably didn't say more than 10 sentences to her in the 3 years we were together before the wedding.  How does that work?  You know why the other girls were included?  Because they had a relationship with her.  That's how it works.  Do you know how bad I wanted you to be a part of that?  But what could I do?  You'd taken yourself completely out of my life so you could enjoy the solitude of your own island.

Well guess what?  Sometimes when you sit on your own island, you end up being surrounded by nothing but water.

But really, the wedding was really just the culmination of a festering illness.  But that'll have to be another late night rant.

Losing my words

I'm not sure I can think anymore.  I'm not 100% sure my mind works anymore.  I think for the longest time, I was afraid that I wasn't going to be the same person on the other side of this thing and now my greatest fear is that I am.

Take it easy, Tiger

So, I've been wondering for a really long time as to why I know longer derive as much  joy as I used to when I was younger. And I think I just found out why.

I'm sitting on a train headed towards Newark to watch the Devils play the Blues and to pass the time, I was reading an ebook I had gotten for my wife. It is the Mindy Kaling book and after reading a few pages, I finally realized my problem. I have been taking myself way too fucking seriously. Holy shit! Ever since I got sick, I've been so lost in my own head and trying to make every word count, I forgot that not everything has to be some huge revelation or some catharsis for some crime committed against me from 20 years ago. I can't believe I've been so stuck up that I don't think mundane topics are worth blogging about. Who the hell am I? No one cares that I write here and my only audience really is my wife and a couple of friends. Take it easy, Paulash. You are not and have never been this serious.

You Can See The Sun Shining if You Really Want to

Any that's spent 5 minutes reading my blog knows that over the last several years, me living out that year wasn't always as certain as it should be relative to someone my age.  I've only had close encounters with the possibly of not seeing the sun rise the next day maybe about 4 times, but other than that, my basic survival was in question for the last 3 years because of my failing health.  What have all these brushes with death taught me?  They've taught me the importance of regret.  They've taught me the importance of love.  Most importantly, I've learned that there are only a certain number of things in life that I can actively control.  Sometimes a shitty situation is a shitty situation and you've gotta take it for what it's worth.  Sometimes, you've gotta concede defeat in order to continue the war.
Lately, I'm having difficulty telling who the good guys are.  I guess war is a bad analogy when trying to describe your life, but if nothing else, I've been battling, trying to get up the hill, and back to myself.  Of course, I would have absolutely zero chance if not for my incredible (perceived) support system.  For the past few days, I think my neuroses when it comes to the people around me has been getting the best of me.  I think it might be a product of the fact that in one way or another, I don't remember really being alone for any extended period of time for the last 5 years.  I've always had someone around or at least close by because of the seriousness of my health. Unfortunately , it seems as my physical health improves, I might be exposing my frayed mental health.
This all started when Anita left a week ago to visit her about-to-pop pregnant sister.  In the weeks leading up to her flight, I joked around with her that she's clearly making a terrible decision and who knows if I could survive by myself.  I'm beginning to think those jokes were really some sort of panic attack by my subconscious.  What's troubling of that I haven't even been ALONE for any extended period of time, yet.  Really, since she left a week ago, I think I've maybe spent about 30 hours or so by myself.  Thanks to a few of my better friends and my nephew's birthday, I've been spending most of my hours with other people occupying my mind.  Tonight marks the first night that I will be in a stretch of a week by myself and if tonight is any indication....  Uh oh.
I don't really know what's wrong with my head.  I don't recall ever being this neurotic.  I'm actually complaining about the sincerity of the people in my life while also writing (typing?!) that in the 2 weeks that my wife is scheduled to be away, I've had or have scheduled things to do with other people on every day but 4.  You would think a 33 year old man could survive 4 days alone, right?  Only 2 of those days are consecutive!  Pull it together, man!
So what I'm trying to say I know I'm crazy, but am I?  I've always been adept at reading people and assessing the situation, so either what's going on here is that my recovery has somehow caused a short-circuit in that ability OR there is an actual issue with the people that I count on.  The people that I REALLY need.
I know that some of the signals I've been receiving in my head are simply just the crazy going out for a walk.  The other day, I friend was tagged in a photo embracing another friend and it triggered a pang of jealousy.  I couldn't understand why I wasn't privy to such embraces.  From that moment on, I basically lost control of my sense of confidence.  Even after I came to my senses and remembered the COUNTLESS times said friend and I have really had no issue with tactile affection and there are numerous pictures of us doing so.  Displayed.  In my apartment.  All the time.  Still, to continue the metaphor, you can't call back the dogs of war. 
I started to see it everywhere.  My family.  I spent time at my sister's house both for my nephew's birthday and for the party for his birthday.  I don't know why, and it was nothing that anyone did, but something didn't feel right.  Somewhere around the time I started dating Anita, my relationship with my sister changed for the better.  Before we had a cordial relationship, but not really as loving as you would think a brother and sister would be.  I keep linking it to me dating Anita, and I'm sure that played a part in it, but really my illness as difficult as it was, had the happy side effect of really bringing my sister and I together.  Since that change occurred I've always felt at home whenever I've been in her house.  For some reason, when I visited them for my nephew's birthday on the 8th (I actually came the night before because I wanted to bake some things for him on his birthday - he loves that) I had this uneasy feeling.  At this point, I can only attribute it to my own ridiculousness, but that doesn't mean it wasn't there.  In fact, last night I had to get some prescriptions filled and I found out the CVS by her house wouldn't tell me if they carried the meds I needed.  I should've gone to the CVS and inquired in person, since the drugs I take are pretty powerful and subject to abuse by pill poppers, I think the pharmacist was just being cautious.  Much to my dismay, my first reaction was relief.  Relief that I would have to go home and be back in my "safe zone."  About an hour after I told my sister that I needed to go home and refill my meds at my local pharmacy, I realized that I had enough medication to last the night and the next morning.  In order to follow the prescription, I would need to be home by noon-ish .  I wrestled with it.  Part of me still wanted to go home.  Luckily, my better angels prevailed and I told her that I could stay the night.  My decision to stay was even protested by my mother who said that I need to stop jostling (I don't know how I jostled, any uncertainty all played out in my head) and that she had already moved her bags to the door and for some reason, that meant the decision to return home was final (I brought my mother).  My initial instinct was to give in and go home, but I fought it off.
I've been fending off similar feelings with people that are less attached to me by blood.  I think I've been perceiving really minor happenings into signs of problems left and right.  I find myself being more polite, as I would with a lesser friend, with some people.  I find myself challenging friends over nothing.  Over things that we've been chiding each other with for years and years.  For more than a decade.  I find myself feeling as though I'm imposing when I have invited myself to events with my friends numerous times.  It's almost expected at this point.  If someone is doing something, usually, anyone can jump aboard.  Why am I feeling so secluded?  I've spent the last week SURROUNDED by loved ones and I can't shake this feeling.
Am I afraid that as I get closer to the other end of this journey that I am so changed that the people in my life won't recognize me anymore?  Not value me anymore?  So much about me has been forever altered by this experience.  There are so many things that I wish could go back to the way they were (like my weight!) but I'm realizing more every day that they can't.  This thing that affected me has left its imprint.  In exchange for these unchangeable alterations, I get to live much longer than I would have without them.  Was it worth it?  What's worth feeling so alone?  I know that I'm crazy, but have I really gone THIS crazy?  Am I questioning my self worth?  As I get better, am I still me?  I'm not sure I want to answer that question.

Invisible Borders: The Birth of Paulash

Not too many people that have met me in the last 10 years know this, but from the time I was born until the time I was about 20, I went by the name "Paul."  In fact, my name is supposed to be spelled Palash but my father decided to add that extra letter to make it easier for me to go by the name Paul and assimilate.  In a way, that name became a way for me to hide who I was.  When questioned about my ethnicity or culture, I would run behind it and hide.  I would proudly declare that I'm an "American" (Read: white) and that I happily rejected all that Indian stuff because ew they smell, they only eat curry, and they all have thick accents and don't speak English well enough.  I was prejudiced against my own people because I was afraid to be one of them.

When I was younger, I wasn't really accepted into the Indian cliques.  I grew up in a town that had an absolutely booming Indian population and because of that, most of the kids my age we all immigrants and all Gujurati.  For one reasons beyond my control, most of them didn't like me.  They used to say something to me in the halls at school and then giggle condescendingly  to themselves and whisper in a language that I didn't understand.  I never felt wanted by that group.  Growing up, I ignored this part of me and threw myself into trying to fit in with whatever group I could latch onto.  This took longer than you would think it did.  I had to wear many masks to try and only show the parts of me that I thought people would accept.  I used humor to deflect.  A few people saw through it (and are still my friends), but for the most part, people saw what I let them.

Paul had almost become a character.  A role I was playing in order be the person I thought they wanted me to be.  To be the person I thought I wanted to be.  I was almost 20 years old before I was comfortable enough to start peeling back the onion.  Funny enough, as I got more comfortable with this newest cast of characters, the people that ultimately would become my closest friends, something happened that would lead me to where I needed to be.  Something happened by chance that led me to me.  For the first time, I discovered the complete person and was happy, comfortable, and strong enough to embrace it.

So unbeknownst to me, one of my good friends referred to me as "Indian Paul," not to my face, but when he referred to me to others.  When I found out about I was incredibly offended.  He didn't mean any malice by it; it was just a way for him to distinguish me from any other Pauls that he might've known.  But to me, it represented everything that I had been hiding from.  It represented everything I had denied until then.  It was like a huge scar on my face.  I thought if I didn't talk about it, maybe no one would notice.  When I found out that I was being called Indian Paul, all the walls I had built up as a teenager crumbled.  In an instant, the very scar that I had been denying was my defining characteristic.

At the time, I was infuriated.  Out of some misguided spite, I asked everyone to call me by my real name.  It seemed less offensive to me than Indian Paul.  Just the word Indian was something I had grown to shun.  But of course, in retrospect, this moniker that I so abhorred became my liberation.  My friend (who today remains to be one of my best friends; my brother from another mother) had forced me to deal with my self image issues without even knowing what he had done.

After asking all my friends to use my given name, I realized my fear was my own.  Sure, they mumbled and grumbled about it at first but in the end, no one cared.  At all.  Not even one bit.  Armed with this knowledge, I started to let my inner desi out.  After about a ten year hiatus, I watched the Bollywood movie Kal Ho Naa Ho.  I cried.  Of course, I got over the usual notion that Bollywood movies are incredibly overdramatic (which they are) and I fast forwarded through most of the songs (which I eventually came to love) but in the end, I really came to love the story.  As a young boy, I used to watch these movies with my mom and I guess that romantic side of me was borne of these moments.  The transformation had officially begun.

I'm about 14 years into the experiment as Paulash and I have to say, I'm much happier than I was.  There's so much I've learned that I wish I could go back and tell to Paul.  So much about being yourself and not worrying about what other people think and that it's OK to be yourself, no matter what everyone else expects you to be.  Maybe then the internal conflict wouldn't have taken so long to quell.  Maybe my life would have involved less tumult.

Actually, you know what?  As much as I pine to go back and change things, I think maybe those battles were necessary to bring mere where I am right now.  Maybe I needed to go through that in order to really find out who I am and what I want to strive towards.  I guess I won't ever really know the answers to these questions, but what I do know is that right now, this place is where I want to and should be.  Not every day is puppy dogs and rainbows, but you know what?  Most of them are.  I may have not won every battle, but I've definitely won the war.

Anonymous Letters

I guess it's time that I let out a little passive-aggression.  Before I start, I just want to say that this is the first post that I'm using my new Bluetooth keyboard and tablet with and that ain't bad!

1.  Every day I worry that we are going to drift apart.  You've been such a huge part of my life that I don't know what I'd do without you.  I know that my fears are essentially baseless and that every time we see each other, I'm reassured of our mutual affection, but I don't get to see you.  There's power in that.  Your face is is something that is etched in my heart and the less I get to see it, the more my heart yearns for it.  I know that emoting isn't exactly your favorite thing in the world, but it's true.  As life slows down for both of us, I hope we don't leave each other behind.

2.  You know, this is my second time writing these anonymous letters and both times, it's really just to say things to you.  You are the reason I'm doing this nonsense in the first place.  The last draft, which I threw away, the words I wrote to you were very angry and visceral.  I think for a little bit I hated you.  Of course I've come to my senses.  I would never be able to hold a grudge against you.  Why?  Because I love you.  I have loved you for a long time.  I've loved you almost since we met.  I don't know why you have singled me out for this punishment, but I promise you that you've won.  I give up and please stop.  If you're treating me this way intentionally, you should know that you are leaving a scar on my very soul because you cut right through me and that's how much I love you.  All I asked of you is to be my friend.  That's all I wanted.  I would walk through a fire for you and you can't tell me happy birthday.  Please stop, please tell me what I did wrong, please let me explain.  I miss you.

3.  And you.  Oh you.  I don't know.  I just never thought I'd get this opportunity.  I never thought I'd get a chance to prove myself to you.  Of course, I would prefer not to be in this specific situation, but since we're in the shit right now, I hope you know that I'm behind you 100%.  Whether I think you're right, wrong, up, or down, I'll follow you into the dark.  I know you're not exactly used to it, but I promise you that you can lean on me as much as you need to and I will prop you up to the best of my ability.  When I was going through my shit almost a decade ago, it was YOU that called that meeting at the diner and asked how you could help and it took ten years, but here I am at your disposal.  I hope that you understand that and maybe let me in a little bit. It doesn't always seem like it, but be assured that our circle is tighter and stronger than it's ever been and if you have trouble or are burdened, trust me and us to help in any way we can.  We're not here just for the good times, we're here for bad and the ugly.  It's not our prerogative, it's our duty and we're happy to do it.

4.  Just fuck you, OK?  Seriously.  I'm so so glad that you are where you are just so we can transition you out of our lives.  You got your position so close and you just wasted it being so selfish.  Contrary to popular belief, the universe does NOT revolve around you and sometimes, you've gotta give a little in a friendship.  But what would you know of that?  I don't know what in this world made you so damn selfish and so inconsiderate to people that are so so SO loyal to you, but it's disgusting.  The sooner we phase you out, the better we are.  We've already got a candidate to fill your shoes and that person has been doing fantastic and actually deserves our loyalty.  The less we get to see of you, the better.  I'm hoping one day you're nothing but a holiday card.

5.  You're my sanity right now.  I don't talk to you enough.  I don't see you enough.  I don't get enough one on one time.  Nothing.  But the time we do spend talking or spending time with each other is rejuvenating.  I'm glad that we have a relationship that allows us to sit down and really talk.  Yeah, when the lights are shining bright, we're the performers, but I'm glad that we can do it when the stage is closed as well.  When you were here last and we were able to sit and talk, I swear it felt like I took a brick off my shoulder.  I know that we're both dealing with some unpleasant situations right now and I'm glad that we can cut through the fog, sit down, and really discuss things with each other.  You are as close to Tom Hagan as anyone in my life.

6.  You're the battery that recharges my soul.  I can't begin to tell you how thankful I am that you've been allotting so much of your free time to spend with me.  I know that you have very adult responsibilities and I understand that your free time is so precious but that's what makes me as grateful as I am.  When you and I are together doing what we do, I'm telling you, it feels like I'm living my dream.  I wish we could do more of it and have it be more serious, but even still, what we accomplish together is absolute ambrosia for my soul and I thank you.  I know that you don't always get the loudest kudos, but you and everything you bring is an absolute pillar of my life.  I hope that as my health improves, I can travel more and we can maybe take our project to the next level, maybe.  Then I would really be able to say that you helped make my dreams come true. 

7.  I feel like sometimes you get lost in my life.  Most people's lives have a pyramid of friendship where their lesser acquaintances are in great number and their closer friends are less numerous with it ultimately culminating at the top with one best friend.  By virtue of some odd stroke of luck, my life seems to be the reciprocal.  The space at the top of the pyramid is crowded with people that I would walk through a fire for because I know they'd do the same for me.  I don't know if I make it as abundantly clear as I should as to your position on this upside down pyramid.  I assure you, you occupy the absolute top tier.  I just feel like because I have so many people I hold so dear, you might not get your time in the sun.  The truth of the matter is, out of all the people in my life, I find you to be the most inspiring.  When I feel as though the walls are caving in around me, I'm always reminded of the strength and humanity you have in dealing with your own difficult situations.  You are the kind of person that books should be written about.  You're not just a great friend, you're kind of my hero.  And not just because we mix our pudding together.

8.  I really don't know how you sleep at night.  Honestly.  Most of all, I feel betrayed.  I feel betrayed of all the things that were instilled in me as a child.  All the things I thought you shared with me.  You have revealed yourself to be little more than a charlatan.  It's all an act that you put on.  I knew that you pretended to be a better person in the presence of others, but I didn't think you practiced such deception with me.  With everyone.  We were supposed to stick together no matter what.  Put our heads together in times of crisis.  That's not you, anymore.  You are always looking at the clock.  Always looking for when you've put in what you think is a days work and when you can check out and get back to what you want to do.  Sometimes, the situation requires more of you.  Sometimes the shit hits the fan and you need to put in overtime.  That's what love is.  And that's what I thought you taught me.  Of everything, I think the worst thing you did was pit me against someone who should have been close to me my whole life.  For as long as I can remember, you played us against each other so that you could always be the shining star.  The hero.  Well guess what?  We both got a peek behind the curtain and we know that you're not the real wizard.  If you feel powerless now with us, it's because we are united.  We have the relationship that we should have had right from the start, despite you trying to insure otherwise.  I struggle every day with the fact that the less I see you, the better off we are.  That's not because we don't want you around, but it's because we can't live in your world anymore.  Your world isn't real and it never was.  When you recognize reality, then you are welcome to join us.  Until then, get used to arm's length.

9.   Uhm.  Wow.  Talk about a roller coaster.  I've been called dramatic and over emotional, but you take the cake.  I get that you have your own issues, but much of your problems are really just you looking for attention.  Not only that, but you're setting records for selfishness.  I have yet to meet someone your age that has so little regard for anyone.  I don't think I've EVER met someone so concerned with controlling the story.  I hope you get it soon.  I hope you learn that everyone around you can't constantly be the pawns in your delusion.  We have to contend with the real world and don't always have the time to fight your fantasies.

Welcome to the Shit Show

It's amazing how one thing going wrong in your life can so easily turn into a titanic sized clusterfuck.  When someone turns on the light, everything that you've been hiding in the dark starts casting a shadow.  Sometime, shadows make it just as difficult to see as the dark.  This whole thing started because I was sick.  I was sick beyond what I could handle.  Beyond what anyone could handle.  Beyond comprehension.  Every time I mention to someone that I've had a stem cell transplant, their eyes bug out of their heads.  "But you're so young," is the universally accepted response followed by other useless platitudes.  It's true.  I was young.  This final process started when I was just 27.  27.  I can't even imagine it anymore.  When they figured out what was wrong, I was given almost a year to process the fact that a transplant might be in order.

But really, nothing could prepared me.  Nothing could prepared us.  After I came home, I remember my friend came over and as soon as she saw me, she threw her arms around me and hugged me as hard as I've ever been hugged.  I have to admit, I didn't really know how to react to it.  Sometimes, even to this day, it escapes me that it's not just me that's affected by my illness.  That the people in my life all have some sort of stake in my survival.  Of course I knew that my family (for the most part) put my needs first to the best of their abilities and of course there was Anita.  To this day I don't know how she did it.  The nights sleeping on that hospital bed.  Giving up entire summers in the years she should be out dancing and drinking until the entire night is a blur.  Those are the nights she spent sitting in my hospital room, holding my hand, and watching Sportscenter.  Looking forward to sleeping on an unforgiving convertable chair/bed/torture rack, I still don't know how she held on.  The only thing I'm sure of is that I would not have had the strength in her place.  I've always been the weak one.

I'm also amazed by how much my friends have been looking out for me.  Of course, maybe they're all in it for the services of a permanent designated driver, but I guess I can give them the benefit of the doubt.  I have had friends drive me around, rearrange their schedules, I've had friends travel from Florida just to visit me. Encouraging text messages, helping me up stairs, understanding last minute cancellations, hospital visit after hospital visit, these people have truly proved their worth.  Don't the deserve a break?  Doesn't everyone deserve a break from all this?  Don't I fucking deserve a break from all this?  Doesn't my wife deserve to live her life like any one of her peers?

Now that I'm almost 3 years removed from the actual transplant, I can't believe how far I've come and at the same time, how distant the goal seems.  I sat today with my neighbor recalling all the times that I was rushed to the hospital because my blood counts were so low that I needed an immediate transfusion.  I mused at how difficult it was to find matching blood for me after 2 years because of all the antibodies.  I sat and thought about and recited that my current condition is bad, but what I was going through before was much worse.  Granted, I'm not going to the ER every 3 weeks, but how much better is my standard of life right now?  I keep trying to tell myself that I'd do it all again, but honestly, 2 weeks before my 3rd "rebirthday," I'm just not sure I would.
Of course, the physical issues that have been a result of the GVHD have been awful, but I think just the sheer amount of time that I've been in this almost state of limbo has taken an immense toll on me mentally.

I've been in therapy for over a year and it seems that as my body is recovering that my mind is just purging all the darkness it held inside.  All these absolute gems have surfaced from times that I've so long forgotten that I just didn't think I would be dealing with.  How am I supposed to cope with my shitty childhood and my recovery simultaneously?  Is that fair?  To have to deal with the evil I experienced in the years I couldn't protect myself and the illness I developed through no fault of my own?  How can I my mind hope to resolve when my body is taking so long?  I'm just not sure this is going to turn out like we all wanted.

Lately, I've been listening to a lot of sad songs and having a lot of questionable thoughts.  I'm plagued with thoughts of ways to stop the pictures from flashing through my mind.  One of the side effects of all the medication I'm on has been that I tend to have an averse reaction to alcohol.  If I go out with my friends, I am now normally the designated driver because I just can't drink anymore.  Over the last week or so, while I'm laying in bed all alone, the only thing I can think about besides absolutely awful memories are the thoughts of going to the kitchen and drinking myself into a stupor and falling asleep.  I think of taking more morphine that I'm supposed to in order to help clear my mind.  To just make it go away, ALL of it.  If only for the next hour.  Lucky for me, I hear my wife breathing as she sleeps and I couldn't do that to her.  I've seen what addiction did to my parents' marriage.  I've seen what it turned my father and my mother into.  No one survives addiction, so right now my better angels have been prevailing, but I'm not sure how long I will hear them.

Everyone has a sad story. It doesn't excuse anything.

I've always been able to brush things off.  Everything.  At least, I've always been able to push things to the back of my mind and brood on it when I'm alone listening to the angry music I thought I gave up on long ago.    I've had my share of problems.  I've made my share of mistakes.  I've seen my share of curve balls.  Every single situation, I've dealt with and moved on in one way or another.  From bad breakups that cost me friendships to problems growing up without a real father figure to looking for attention in all the wrong ways.

I'm fucking 2+ years out from this stupid bone marrow transplant and it still defines almost EVERYTHING I do.  I just spent a weekend with 2 of my absolute best friends in the world and I had to sleep for the equivalent of an ENTIRE DAY just to regain my strength.  What did we do that was so taxing on my body?  Oh, just walked around a museum.  Went out to eat.  Argued baseball with strangers. In bed around midnight.  Crazy, right?  When is this going to end?  People tell me to revel in the small victories I have here or there but what?! How?  How can I do this when I expected so much more? How can I do this when I want so much more?

Everyone tells me to compartmentalize, great advice.  Now try it.  Seriously.  Try and separate yourself from something that rules your life.  Imagine having a shitty job with an absolutely shitty commute that pays a great salary.  Is money going to fix the fact that at least 5 days a week you're in hell? If you were looking for another job, wouldn't those factors come into play?  The difference with me is that I don't have another choice.  This is all I got. My entire existence is ruled by this thing.  This decision everyone and I made a long time ago.  We all thought it would be over now.  We all thought I'd be back to me.  I'm told to "just realize I'm living a different impermanent existence".  To blame the disease and not myself.  You know what?  It's not that easy.  How long is impermanent impermanent?  This is going on TWO YEARS of issues.  TWO YEARS? If you stick a needle in someone's arm, at some point no matter what they're going to become an addict.

You know what's funny?  During this recent Presidential election season, we were bombarded with slogans demonizing so-called "takers" and societal "moothers".  When do I fall into this category?  What does the clock start ticking?  When do the whispers start among my family friends that I'm somehow milking this?  When does public opinion sour, if it hasn't already.  How fast do I have to run to get away from that?  How many pills much I swallow every day to avoid the jagged little pill of the inevitable backlash.  I see everyone's lives progressing without me and I hate it.  I hate it to the point where I decided I need a little break from social media.  Seeing everyone else be so happy without me can't be good for my psyche.  I don't know.  This is so difficult.

Maybe I'm just over exaggerating.  It's just so hard to live each day without feeling helpless and shame.  Unfortunately, I'm afraid this might never end and I'm not entirely sure how to deal with it.

Feeble

I feel stuck.  I feel caught.  I feel stagnant.  A few months ago, I'd have several weeks surrounding a few days where I "crash".  My body gets so worn out that I basically can't move to even get out of bed.  Normally, they would last a day, maybe 2 at most.  Well, the latest crash that I've been trying to get over has lasted more than a week.  We're almost ten days into it.

Talk about an effing setback.  For the last 10 days, I've LITERALLY slept 10+ hours each night except for one night that I was was awake almost THE ENTIRE night just writhing in pain.  February 11, 2013 will officially mark the 2nd anniversary of my transplant.  If someone had told me I'd still be this deep in shit, I think I might have reconsidered it at the outset.

I was nervous a few months ago when I met the lady that said she was 3 years deep and still experiencing some complications.  Is this what's in store for me?  Every time I think I'm healthy for anything, I feel like I'm yanked back to square one or even pulled back BEYOND the starting line.  The worst part is, I don't, NO ONE knows how to make this any better.  Everyone just keeps dropping obligatory words of encouragement while muttering under their breath that they think I am somehow milking this.  I wish I could trade places with those people for just ONE WEEK.  Just so they might know an inch of the hell I have to go through.

No, that's not fair.  I wouldn't wish this on anyone.

Friends to the end.

So, I had a little bit of a scare over the last two days.  My great friend sent me a text that said "This might be the Vicadin talking, but I kinda want to have a pillow fight with you"  At first, I really dismissed it.  The next day, I read something else involving Vicadin again and I started to worry.  I immediately started thinking that his move to PA was just too much for him and his looking for solace in all the wrong places.  I was prepared to tell him, "Friend...  Find the direction of the nearest border and RUN!  RUN for your life as PA is clearly swallowing you whole (and for men our size, that's certainly not an easy task).  Lucky, it turned out to be nothing nearly as serious and when I finally spoke to him, I scolded him for not telling me he was on it and his punishment would be that he'd have to spend a weekend with the boys starting this Friday.  So in the end, it worked out for everyone.

It worried me that I thought he was doing something so stupid and he didn't alert me.  Everyone knows I make sure he's aware of every stupid adventure I attempt... I mean, someone's gonna have to back me up, right?

I always considered myself (for what it's worth) a considerate friend if not a good friend.  I'm always trying to get everyone together and actively try to keep our group together even after 12 years have passed since it formed.  I try involve everyone, make sure we are all aware of what everyone's up to (the public stuff)  These are things I think about.  Things that drive my day.  Making sure that the family I created for myself remains as constant as possible for the rest of my life.

You see, when my parents came to the United States, they didn't come with a lot of family.  In fact, they didn't come with ANY family.  A cousin of mine and his mother and father were a part of our lives for a little bit, but that's really it.  The only connection I've had to blood relatives I've had were our bi-yearly trips to India in my youth and arguably the 2nd best year of my life, 2004 when I spent the entire year in India, living amongst my family.  With the lack of family surrounding me, I tend to see my friends as my chosen family, and in most instances where emotions are concerned, I really do consider them my family.

So, losing someone that I would consider that good a friend and lowering them from that status is not a decision I come to lightly.  Especially with the women in my life.  Since becoming an adult and really establishing those I care about, I would say my friendship attrition rate has been absolutely admirable.  Losing friends is just not something I do.  In fact, I feel as though the troubles we've all been in has done nothing short of brought us closer.  And don't get it twisted, keeping REAL good friends at THIS age is difficult.  Life just gets in the way too often.  You are relegated to text messages and scheduled outings as opposed to the 6:00pm call you would get when you were 21 that went something like, "Dude, I am so hungover from last night, we definitely need to get drunk so I can get rid of this headache... You're driving."  And, BOOM!  When you're 31, that phone call has to come about 3 weeks in advance MINIMUM if you want more people involved and festivities end 3-4 hours shorter than you're used to.  And throwing up at the end of the night is NOT a good thing. 

But I digress.  So, it's a fight to keep good friends and I pride myself on my record.  And since my friend are so close and I'm not really accustomed to losing them, when I actually DO lose one, I feel absolutely devastated.  Unfortunately, despite much effort on my part, the last two years I've had to detach my heart strings from two of my favorite friends.  Friends that I've had for quite some time (double digits each) and both whom I sincerely loved like they were my own family.  One of them....  One of them draws tears from my eyes as I speak.  She was the Abbott to my Costello.  The Wetteland to my Mariano.  I haven't had a meaningful conversation with this person in probably over a year and I can't think of a day that goes by that I don't think of her.  Both of them really.  The other one basically shaped who I would be as an adult when she met me.  She introduced me to music.  My god.  I just realized that.  For how many times some silly song felt like it saved my life, it was at least a little thanks to her.  They've taught me so much about life, showed me so much of myself, and helped make me so comfortable in my own skin, I HATE that we just simply grew apart.  It would be so much easier to accept if there were some massive, existential fight and that was it.  But that simply just was not the case.  And for the love of Jeebus, I tried.  I swear to you, I tried hard, and I tried for a long time.  Ask my wife.  I tried so hard over the years to keep our friendship at an acceptable level, but unfortunately, it certainly takes two to tango.  There are only a certain number of times that even my massive ego can take an unreturned phone call, an ignored text, or even the lowly dismissed FB post.  At some point, I have to cut my losses and drop the dead weight and I hate it.

You know what, I thought that if I wrote about it, it would make me feel better, but it doesn't.  It feels awful.  I draw so much strength from the people I love that it's felt like a part of me has been missing.  But I trudge on.  I cherish the friendships I have been able to maintain and keep going forward.  It's all I can do.  It's all any of us can do.  I really had much more to say about this, but my heart hurts and I must stop.

Thank you for everything you are to me, even if you aren't there for me to be it.

I'm the Only Bandyopadhyay of my Lineage Left in this Country

So,  I know it's been a while since I've written anything, but let me explain....  It's been a weird couple of months.

My father died last month.  Yeah.  Exactly.  It was such a strange thing to hear.  It was the middle of the day, I was just sitting at home and reading (read: watching TV), and my sister calls me.  This is not abnormal.  Since the time that my sister and I got closer we talk a few times a week about nothing.  I really thought nothing of it.  When I answered the phone, there was no chit chat.  She just dropped it on me.  As soon as the words came through the earpiece, "Dad died yesterday, " I could feel my pupils enlarge.  I stared around for a moment in silence.  I didn't (and still don't) fully know how to react to the news.  The man has been absent from my life for the past 25 years.  The last time I spoke to him in 2004, he was busy saying terrible things about my family to which I responded that if he continued, I would take no part in the rest of his life and would not perform my duties as his only son upon his death.  That conversation is the first thing that came to me after my pause, but more on that later.

I was so conflicted.  The man was basically a stranger to me.  I know the evils he had done.  I have some vague happy childhood memories of spending time with him.  I remember his voice.  I remember the specific way he pronounced my name.  I remember that he used to call McDonald's McDougal's for no real reason.  But those memories are so distant.  What I really remember?  What I remember about the man that is my father is the pain he caused my family.  The pain he caused my mother.  I have such vivid memories of my mother and father SCREAMING at the top of their lungs when I was young.  I would be so afraid (I was <5) that I would hide in my father's closet until my sister saved me when it was over.  I remember how much he revered having a son and how much he basically ignored having a daughter.  I remember that he desperately wanted us to call him "Bapi" or "Baba" but I'm careful not to even refer to him as "Dad." I remember that my sister, my mother, and I would walk into my room (which was now his permanent dwelling) and more than once was screamed out of there.  I could only get a gimpse of his state.  I was too young to understand why there were milk jugs of (what I thought was) lemonade surrounding his bed.  Why was he always naked?  And why did the room ALWAYS smell so bad.  For a four year old, this is all too much to process.  Only NOW reflecting back am i able to decipher this scene brought forth from my memory.  I remember that when he used to visit me, I would always get a trinket or toy.  Even at that age, I felt like I was being bought and knew better.  Strangely, I remember his enormous white Chevy Caprice with the Cookie Monster sticker on the back bumper. 

That is really all I have.  Sure, I have a few positive memories here and there.  I remember right after The Karate Kid came out, him and I would hold karate tournaments in our living room.  Ha.  Maybe that explains my obsession with that movie series.  Or maybe it's just one of the greatest movie franchises in the history of movies.  Either way.  I remember our MacDougal trips in which I basically had free reign over what  I ate and how much tim time I spent using the amenities they had available.  I even vaguely remember him helping me with some math homework (boy would he be disappointed in the awful mathematician I've become).  For the most part, these tattered memories are all I have of my father.  An ocean of negativity dotted with small buoys of kindness and an inkling that on the inside, he may as well have been a good person.  If only THAT person one the conversation in his head every day.

Unfortunately it didn't and by the time I was 6, he was basically gone from my life.

I'm going to skip ahead in my life as to skip the more important questions that arose because of my father.

I made a lot of mistakes when I was trying to grow up.  A lot.  Probably more than my share.  Every time something would go wrong, someone would always murmur between their breath, "he's just like his father".  Sometimes if my behavior was bad enough, someone made sure I head the comparison to my father.  I don't know what they were trying to accomplish.  Maybe trying to get me to stand up and 'prove them wrong', but that's not what happened.  Every comparison to my father sunk me further.  That combined with OTHER external forces acting against me that at the age of about 18 when a family member climbed over a second story balcony to break into the house and instead of unlocking the front door to let my mom in, he spent the next approximately 4 minutes kicking down my locked door, finding me sound asleep (I had been quite ill that week and took some Nyquil to help alleviate some symptoms and was SOUND asleep), analyzed the situation and decided that the best course of action was to kick me so hard in my sleep that I wake up in a panic and immediate urinate on myself because I didn't know what was happening.  The funny thing is,  when my wits returned to me but before I recognized my assailant, my first thought was "What did I do?" instead of "Are we being robbed?" or "Has an insane person broken into our house"  I'd become so accustomed to this sort of treatment, I assumed it was my fault.  Anyway, I digress..  After the night that I got the shit kicked out of me for basically being sick, half asleep, and accidentally locking the door leading to the garage with the lesson of the night becoming "Paulash needs to be more aware of his actions", I guess I decided that the murmurs and backtalk must be true.  I always worried that I would not amount to anything because of the unique combination of biological AND environmental barricades and at this point, after that night, I confirmed it in my own head.

This was the legacy of my father.  Or at least, it could have been.  I spent years trying to reconciling this with people trying to tell me how smart I am and blah blah blah, but nope.  I was destined to leave this world in a blaze of unglory.  Couple that with my mysterious illness and I figured I woudn't make it beyond 35.  I told people this.  I lived my life like this.  Indulging in pointless 'now' pleasures, not preparing for tomorrow.  At age 31, I am approaching my old doom's day line authored by my father and the genes he past on to me that guaranteed my failure.

Of course, that's not my life now.  In fact if you ask my wife, she'd probably tell you that how far I plan into the future and how much I concern myself with  our happiness in terms of years creeps her out a little (we are only recently married and I already negotiated the names of our potential children).  What made for the dramatic turn around?

A friend of mine saved me and she probably doesn't even know it.  I'm not sure I ever thanked her for it.  While on a downward spiral, wallowing in my own self pity and wondering why I was subjecting myself to all these testing if I'm destined to just be a fuck up..  Why?  She answered me very calmly that what I become is essentially my choice.  But I'm too much of my father.  She then inspired me, internally.  She likened the traits of my parents into basic baking ingredients and said that adding as much of each part of my father and mother to create me in the way I want to be.  Sure I understand that was oversimplification and that it does nothing to explain heredity and whatnot, but for the first time in my memory, someone told me that I could actually take aspects of my father and STILL BE WHO I WANTED TO BE.  This was the first time I had ever heard that.  It was absolutely liberating.

From then on, I was on a mission to better myself but then was derailed once again when I fell majorly ill about 5 years ago.  I'm just NOW climbing out of that hole.  As difficult as it has been, I'm optimistic.  I have all the tools in my possession to bring my life to where I think it should be.  I gave up some time to illness and some more to idiocy, but I plan on regrouping now.

I declare that in ten years, I will be where I want to be in every aspect of life.  Sure I'm farther ahead in some aspects and not others, but in 10 years, I will have taken our family name to heights that I want to see it.  Our family name in this country will garner respect, love, and compassion.  People will count on us because we are worthy of their commitment.  Ten years.  That's not a lot of time so I better get started.  You should stick around, though.  It's going to be one hell of a show.

Shit just got real

Today was the first Father's Day since I was 5 years old that I could l celebrate with someone that can legitimately call me son.  Not only that, he's one of the best dads I've ever met.  My father in law has COMPLETELY devoted his life to his children.  And what did I do?  I stayed home.  I was too sick to go anywhere this weekend but made sure that Anita went.  I felt so terrible.  I feel so isolated by all this.  I was so ashamed, I didn't even call him to wish him a happy father's day.  Way to get off on the right foot, Paulash.  Ugh.

This disease is taking my soul.  Slowly and painfully.

When great is just being normal.

While most people are looking for something special to punctuate their lives, at this point I'm just looking for a sense of normalcy.  I'm looking for a brief respite from fighting to just feel normal for a change.  The few chances that I get at it make me feel great.  The main problem is happens to be that the opportunities to feel like me are running few and far between.

On a normal day, I wake up at about 9:30 and take engage in my morning ritual.  Most people have the SSS (shit, shower, shave), I have an added S for Self medicate.  I throw on my "i feel sick" robe and sit down by our TV.  If I'm feeling extra sick,  I climb back into bad with my beautiful wife and see if I can avoid falling into her trap.  You see, once Anita senses that I am back within her reach, she sets the trap.  She'll have me wrap my arm around her and she rubs my head.  If she's able to execute it right, we're bypassing getting up, eating, getting ready, and going straight to 5 hour nap mode.  She's so evil!  She knows how much I hate wasting away in bed but she doesn't care, she just wants the snuggle for her own agenda!!!!  But I digress

Normally, after I wake up , I flip between the news and Sportscenter.  This way I know if there are attacks on the way from Iran or Mike.  Once I am versed on the sports and news of the day, I get ready to... Wait.  That's basically what I do.  Isn't that miserable?  I basically have to stare at the clock to know when to take my pills, when to awake, when Judge Alex comes on and THAT'S it.  That's the vast umbrella of my responsibilities.  Aren't I a bit more than a watchgazer?  Just waking up, spend 15 hours doing almost NOTHING of consequence, and then here my phone beep to let me know it's sleep time.  This pattern has seldom deviated from and it seems as though every time I do deviate, while the activity feels great at the time, depending on the activity I might suffer for it for months.  This routine is seldom broken and each time I try to and fail, anger, frustration, and sadness well up in me.  I've been going through this stuff for more than a year now, How is that possible?  Aside from this disease (and now the weight the cure has burdened me with) afflicting me on and off for the last two years, I've really been a relatively healthy person.  It's just that when things go wrong, it seems a lot worse.  When most people push them self to the limit, they get better and their body's get stronger.,  i have the exact opposite effect.  My body absolutely fails and I regress.  I get sick.  I'm bedridden. Worst of all, I'm mentally annihilated.

But now...  What I'm going through now is completely unprecedented.  I've never had so people either say or imply the word 'setback' to me.  Sometimes I become utterly frustrated with what seems to be the fact that every time I try and put a date on when I'm going to be at least feel well enough to go back to work, by body reminds me i'm not in charge.  Nothing makes a recovering patient feel less in control this circumstance.

I guess my biggest worry is just when.  When am I going to feel better?  Everyone keeps warning me not to put any timelines and let my body heal at its own pace.  I am also scolded about going back to work last year against better medical advice.  I'm just sick of it.  I'm sick of seeing everyone else living and me just hanging around.  Facebook has really destroyed me.  I see everyone so happy.  Spending time with their loved ones.  Traveling to all different places.  I WANT TO DO THAT stuff.  I don't know, I guess I'm just losing hope.  I'll have to find some somewhere.  blurgh

Review: Drift: The Unmooring of American Military Power

Drift: The Unmooring of American Military Power by Rachel Maddow

My rating: 4 of 5 stars



Does it count as reading if Ms. Rachel Maddow is reading it to me herself? Whatever. I got a free trial from Audible and chose to listen to Drift and have been loving it. I thought I would be reading a book about the expansion of executive powers over the last three decades. So far, through chapter 8, all I've really come away with is that Reagan was a TERRIBLE TERRIBLE president for the little people as he set many MANY bad precedents. I'm always on board for some Reagan bashing.



View all my reviews

Thank goodness for Pushpita Bandyopadhyay

I have basically been immobile the last two days.  I have been trying to be more mobile and active to try and get my body ready to get back to work.  In this effort, I went to a game night at my best friends' house on Saturday night.  I was very conscious of how much energy I was trying to conserve and what food I was eating to maintain myself.

I didn't even see it coming.  The next two days were filled with so much pain and fatigue, I could barely get out of bed.  I have been so much pain that I've basically went through my pain killers.  I'm done.  With REALLY strong narcotics.  This is the longest episode of prolonged pain that I've ever had.  I need help just to get up.  I'm basically a mess.  If I'm in excruciating pain tomorrow, I don't even know I would be able to do.  It's not like the doc could call in the prescription for narcotics.. That's illegal.

I don't know what to make of this latest episode.  My hands are shaking harder than they've shook in a while.  My joints CRY OUT  in pain every waking minute. 
I feel so listless.

I've been trying to detach myself from what's going on, but I find it difficult.  I'm trying to frame what I'm going through as an experience as opposed what I am.  But I'm finding it difficult.  And the more I think about it, the more I think I've changed for the worse.  Some of what made me ME is gone and I fear that I will never gain it back.  Worst yet, it's been replaced by this listless, joylessness.  Just marking time and not enjoying.  Not cherishing time with loved ones like I should.  I would say it's a funk, but it's been going on for far too long.  The only things that make me feel REALLY happy inside right now are my sister's kids.  My god.  Just to be around them when I can.  To have them sit in my lap with their scrawny little arms wrapped around my neck.  To have Ella ask me about the world (and subsequently have me lie to her to make sure she stays away from boys until she's at least 30).  Or to see how imaginative Cameron is when he plays.  It is what life is supposed to be.  It's why I understand why my sister is the way she is.  She doesn't wear expensive clothes.  She doesn't go out.  She doesn't cook too often..  She sometimes has issues with her job.  But to come home to those two every day, I'm sure every day might not be as great as the time that I have with them, but I can bet you that if you ask her, she would tell you the good days ALWAYS outnumber the bad with her family.  What else can you ask of life?

Of course, what makes me most happy is my wife.  I can't deal with the way she looks at me and caresses my face.  I've become such a wretch.  Such a shadow of the man I know she intended to marry, but there she is, always ready to help me out, or to say I love you, or to just hold me.  The love I see in her eyes  and embrace every day is what keeps me going to the next day.

And thank goodness for my mother.  This past Monday was absolutely impossible for me to deal with.  I called her at noon and she literally stopped what she was doing, came over, took me to my doctor's appointment and then helped me buy some groceries for the house (we were missing some essentials).  I don't know a lot of moms that could be on call within the hour.  It meant so much to me to go to that appointment and I was afraid I'd have to miss it.  She really savd the day.

I have another appointment on Thursday.  Let's hope we can fix some things.  I can't keep going like this.  I can't keep existing like this.  I need to feel.  I need to experience joy outside of my immediate life and I don't know how to turn that back on.  Am I depressed?  I can't imagine someone with my attitude is depressed, but then again.. WTF do I know.

Ugh.

Up and Down

You know, I was never one for roller coasters.  I mean, I've been on my share of emotional roller coaster relationships , but that's a blog for another time in another circumstance.  I'm talking about physical roller coasters at amusement parks.  I've never really liked them as I have a fear of heights and I don't really like not knowing what's going to be around the next bend.  Funny enough, I think it's for these same reasons that my wife actually REALLY ENJOYS roller coasters and will stop at nothing to ride one if she's within visual range.  She is a rock and is afraid of nothing.  I guess that makes me the spineless wimp that's afraid of everything and we come together because opposites attract.

I digress, anyway.  This photopheresis thing seems to be working, but the results are kind of like rinding a roller coaster.  I've been to treatment five times.  One time, I felt so good that I actually went to the treatment completely alone.  Drive myself down to Philly and back without any problems.  Another, earlier time I fell asleep before we even exited the parking garage I was so exhausted.  I ended up sleeping for the rest of that day and into the next morning.  Completely out of character for me to sleep late.

So, now my body is a bit more accustomed to the procedure, yet the results are still somewhat like riding a roller coaster.  Overall, I would definitely have to say that I feel better.  I feel much better and what's more is that I feel optimistic.  I think, as slow as it's going, I'm getting to a better place and that's all I want.  How crazy is it that I'm living my life right now just to get back to work?  Who knew being a semi-productive member of society could mean so much to someone.

Unfortunately, with the way the treatment has been going, the after effects have been somewhat unpredictable (like a roller coaster).  Last week, after BOTH treatments, I felt fantastic!  Great enough to see some people that weekend and have lunch with Mike.  I even called my boss to let him know of my progress (a phone call I've been avoiding as to not have to convey such massive failure).  This was looking up.  I was starting to see people.  My life was slowly starting to take shape again.

Then this week's procedure hit me.  The first one was fine.  I came home and was a bit tired, but certainly not OVERLY fatigued.  After Wednesday's procedure, however, I was completely annihilated.  I've been reeling for two days now with aches, pains, and overwhelming fatigue.  My hands have been tingling all day like they are not getting enough blood and that makes me nervous. 

I'm hoping that by tomorrow, everything is at least where it was.  I have a big weekend coming up and I'm nto going to let some GVHD ruin it.  Right?

Ugh..  When will this all end??  When can I get back to being me?

Can you believe that she's been with me for five years?!?!?

So wow. Anita and I have crossed a milestone... We have been together for FIVE effing years. Anyone that knows me knows that being around me as much as she has for five years, she deserves some sort of award. I mean.. FIVE YEARS... That level of intimacy is Joe LaPlaca territory.. With slightly less taint tickling (in her defense.. That man knows how to tickle some taint).

All jokes aside, I've never felt so loved, so happy, so at peace with myself as I have since we've been together. And while this is OFFICIALLY the last time we will be celebrating our dating anniversary, I just wanted to recognize how amazing the last five years have been.. With a little help from our friend Elton John...

It's a little bit funny this feeling inside

I'm not one of those who can easily hide

I don't have much money but boy if I did

I'd buy a big house where we both could live

If I was a sculptor, but then again, no

Or a man who makes potions in a travelling show

I know it's not much but it's the best I can do

My gift is my song and this one's for you

And you can tell everybody this is your song

It may be quite simple but now that it's done

I hope you don't mind

I hope you don't mind that I put down in words

How wonderful life is while you're in the world

I know that it hasn't been so easy lately, but I know you believe when I say that you are all my reasons.  Everything I've been trying to do is for you and for us and the future.  I've loved you for so long, I don't remember myself as anyone else but the person so deeply in love with you.  And that ain't bad. Stay black!!

Happy final April 10th!

Not so Great Expectations

I had an appointment with my phyisical therapist today and we had a conversation about expectations.  This guy, his name is Jim and he's a bit older than I am, but we have similar ideologies and we have some great conversations about pop culture and politics.  He's very good at his job and he's good ABOUT it.  He doesn't make me feel like I'm at a physical therapy appointment.

Anyway, he spoke to me today about expectations and how I should start thinking about when I can transition to an outpatient facility as I become more independent.  I meet his request with my normal "yeah."  When he pressed and asked for a specific answer..  I froze.  Expectations.

Expectations.

That word has been swirling around my head for months.  What everything is expecting of me.  What I'm expecting of everyone.  What my expectations are for ALL this.  What I wanted to tell Jim when he asked me was, "I EXPECTED this to be completely finished by my 1 year anniversary...  But here we are almost 2 months later and I can barely take care of myself as various ailments have taken grip upon me.  How can gauge my expectations when I don't know what's around the next corner?  The only expectation I have is to wake up in the morning and meet the challenges of that day.  I can't plan the future because it's not guaranteed.  Not anymore.  Not for me.

Boy, that sure sounds depressing.  And now that I'm being completely honest, I'm spiraling down pretty quick. I think with my own psyche completely out of whack with all that's happening and with the amount of Prednisone I'm taking on a daily basis, my mind is a slurry of emotions just waiting to bubble over.  I've met various situations with unwarranted tears, inapprorpriate anger, awkward laughter.  I've been having dreams that I would be embarrassed to describe to a psychiatrist.  My daydreams involve my own demise (not at my own hand).

I don't know where my mind is going, but it's going there without my permission and it's put the pedal to the metal so to say.  The worst is that Anita is getting the brunt of this.  I've always been an little off kilter with my emotions since she's known be but now, oh man, now she's just sitting at ground zero.  I feel SO MUCH STRESS.  I feel SO MUCH DISAPPOINTMENT.  I feel SO MUCH right now.  I'm just a ticking time bomb and I don't know how to diffuse myself.  Do I complement my drug box with some Xanax?  Is that really the answer?  MORE pills?  Aren't the number of pills I'm taking partially to blame for this mess in the first place?

I'm having trouble sorting all these things out.  And as much as I wish I could focus 100% of my attention on this, I feel like I've got 1000 other things that need a good amount of attention as well.  I need to get the eff out of dodge.  Seriously.  I need to grab my beautiful and as understanding as she can be wife by the hand and just get out for a weekend and sit down in a town that isn't ours and unwind.  I need to not worry about our finances.  Not worry about how much money is gone from our FSA account already.  Not worry about when the next Photoferesis appointment is.  I need to break life back down to its essential elements.  Me, her.  Right now, that's all I need to survive.  Let me focus on THAT and make that happen.  Then I can come back and start worrying about expectations.

Fucking Myelofibrosis.

Against My Better Judgment

So it has long been my best friend Joe's thought that our phone conversations should be turned into podcasts that should be shared with the world and labeled something to the effect of "Comedic Thunder" or "Guido Dots" or something like that.

Of course, in the interest of NEITHER of us getting arrested for some of the absolute awful stuff that falls out of our mouth over the safety of the security of our phone connection, I remind him it's smarter that these words stay between us.

That being said, I feel like I need to share this one story that unfolded slowly over the past few days.

Let me set the stage for you:

A few days ago when it became apparent that I would partake in this procedure of photoferesis, Joe was obviously one of the first to know.  Now, I'm sure I explained it to him quite intelligently, but for some reason, when I said "it takes my blood, exposes it to sunlight and the blood reacts to the UV light."   For some reason, his response was, "Oh!  I get it.  You go to the doctor and go through a procedure where you turn sunlight into semien.  I get it.  We all knew it was going this way eventually."

It broke the tension I was feeling.  It was funny.  Come on.  It was.

Anyway....  Fast forward to today at 8:00.  My mom has driven me down to the center but at the first sign of blood being taken out of my arm, she BOLTS from the room like a thief at a police HQ.  She did well getting to my house so early and taking me... Poor girl just can't handle the site of blood.  Not a big issue, I had my trusty tablet queued up on a cheesy movie and I was ready do to.  8:00am hits and I hear the chorus from "Crazy Love" by Aaron Neville playing from my phone..  What the heck is Joe doing calling me so early in the morning?

"Yo...  Joe..  What are you doing calling me so early in the morning?"

"Fuck you... I'm up.  You're up.  That's my new rule."

"I'm glad I was consulted on this new rule."

"Oh please, like you consulted me on your I'm gonna whine all the time because I'm sick all the time rule."

"Touchy,.  I just got hooked up to all the machines, the photoferesis thing is about to begin."

"Oh yeah, they're ready to turn that sunlight into siemen, eh?  I'm positive this is going to make you feel better."

"I really hope so, but I can't find my mom!  She's been missing for like 40 minutes!"

Joe's final response, "Well DUH!  Someone's gotta go out there and wrestle up that siemen!  It doesn't come from nowhere!  Everyone's gotta do their part to get you back!"

I seriously laughed for the next five minutes.

Not for nothing, and he's going to resent that I'm using him as an example of what's going right...  But this is the kind of support I've been getting and it's been great.  I feel like I've been completely terrible to my friends over the past few weeks.  It has been met with nothing but understanding and kindness.  I've been treated by my nearest and dearest as if NOTHING is wrong and whether I cancel engagements with them or not, they've just been treating me like everything is alright...  PLanning the next event or making fun of my mother or whatever it is we normally we do.  It gives me a sense of normalcy to grasp on to as my own normal drifts in this sea of medication, emotion, and bloating.

I will say that after the treatment, I felt wept out, but I felt good.  And after I rested, I felt great for a good cross section of the day.  At the end of the day, though...  I still fell completely fatigued... But I'm hopeful with this procedure.  For about 5 hours, I felt REALLY good.  Not something I could say for a WHILE.  plus, I got to wear those AWESOME glasses.  Oooohhh  Yeahhh...

Here we go again tomorrow!

Here we go again.

So, I've qualified for a semi-experimental procedure to help mitigate some of the symptoms of GVHD.  It's called Photoforessis and my first appointment is tomorrow @ 7:00am.  I can't express to you how nervous I feel.  I'm not nervous so much as to the particulars of the procedure itself, I am worried about it not working.  I'm just tired of going through procedures and coming out on the other side feeling like this.  You know?

I figured I would let some random grumblings get out into the world before I start this journey to being ACTUALLY better and returning to being at least a (somewhat) productive member of society, a better friend, finally attempt to be a husband deserving of someone like Anita.  Oh, I hope so.

First...  So, I've become extremely reclusive.  Did you ever think in a trillian years that you would associate THAT word with me?  Recluse?  Paulash?  Really?  I'm supposed to be the anti-recluse.  The recluse's worst nightmare (ahem, Mike).  Well, a few weeks ago, my doctor recommended that what might help me feel better emotionally would just be to go out and spend some time with people that I know and care about.  It was supposed to help 2 fold; one I would gain some stamina outside of the house and two, I would feel better emotionally being surrounded by my compadres. 

Out of the 10 engagents that I had planned with my friends, I canceled 8 of them.  When I was sitting and discussing this with my friend this afternoon, I couldn't believe that number. When have I ever been known to cancel on 80% of my plans?  Have I ever had a stretch like this?  Ever?  Lucky for me that these people have been around for as long as they have or else they'd flake out on me and my life as I've been flaking out on them.  The one time I DID go out with a bunch of my guy friends I got so sick afterwards, I could barely get out of bed for the following 3 days.  Great advice, Doc.  Hopefully, this blood irridation will be the beginning of the end of all this.  I still can't believe I canceled on those people.

A lot of premieres for shows for the spring season set off these past couple of weeks.  I don't recall any one of them disappointing.  Don Draper's wife singing that song to him at his birthday will be in my dreams for WEEKS to come.  And Game of Thrones... Oh might Gameof Thrones.  If you're not lining up behind Rob Stark at this point, you are on the losing side of this war.   Right now there are a lot of stories going on and they are alla kind of scattered so I'm a little afraid of how they're going to tie them all in together, but at the same time, I have faith in HBO to absolutely amaze me in ways I didn't know existed.

I put a decal on our car.  It's for the Jedi Order.  It means I'm officially a jedi, right?  Jedi's can drive Hondas.  Sure they can.  I'm a Honda driving Jedi.  Hello world.

We recently had a breakdown on our main desktop.  Thank Tebow for backups.  I hope you people out there in Windowland are backing up your data diligintantly.  It should be a crime not to!

I'm so excited for baseball season this year.  I don't know why.  I think that I haven't been able to properly enjoy a baseball game (at the park) in a number of years, and this year I am absolutely DETERMINED to call in some markers from friends that said they'd pay for me to go see a Yankee game for one reason or another.  Don't think I didn't take note of what you said... And I plan to hold you to it!!  I even have Anita excited at the prospect of tailgating before a game.  How this all of a sudden changed for her is beyond me and I'm not going to push it and change her mind!!  While I'm cautiously optimistic about the offense (enough to draft ARod in my fantasy league) and have confidence in the pitching, I'm looking for a good season and going deep into the playoffs.  But I guess, that's nothing special for us at Yankee Nation.

So let's pivot to this election!!  Thank you Republicans for COMPLETELY having this contraception bomb blow up in your face and having anything with a vagina and their own thoughts opposing the Republican Social Agenda.  I have never seen poll number dip this fast.  Women are leaving Romney faster than Newt leave sick wives.  I keed.  I keed.

From what I hear about these first two treatments tomorrow and Wednesday is that I shouldn't be waiting on a miracle.  This is a long and arduous process and I might not feel the intended effects of the procedure for a few weeks.  It's going to be difficult tempering my enthusiasm mainly because I want out of this funk NOW.  I want to just get a glimpse of who I used to be.  Really.  I hope that's not too much to ask.

Is anyone paying attention to the NBA?  Me neither.  I'll just wait until the 2nd round of the playoffs and start enjoying it from that point on like every other American.

I broke our main desktop computer.  Seriously.  I did.  I feel so stupid when I do something like that.  I mean, computer maintenance should CLEARLY be in my wheelhouse yet... Here we are.  The silver lining is it gave me an excuse to finally split the video feed so that we can watch the videos on the TV while also keeping it connected to the monitor.  It's the low-tech solution to the problem, but that's my favorite way to do things.

My mom bought herself an Amazon Kindle Fire.  Oh boy.  Her interactions with this device could spawn their own blog.

So, it's the next morning now and my mother and I are in the Perelman Center about 1/2 hour early for my appointment.  I made the mistake of bringing her new Kindle Fire with me.  Man was I right.  She just asked me where the mouse was.  I can't make that up.  I don't know why she wanted it, but it was on sale and she can certainly have whatever she wants.

Where was I from last night?  I should ignore my ramblings and just take pictures of my mom trying to get used to the user interface on the the Kindle Fire...  It's amazing.  Of course, I can't do that or else I think my mom would slap me across for the first time in 12 or 13 years.

OK.  So it's been about 10 minutes and...  I don't mean to alarm anyone..  But she's figuring it out.  Yeah.  She's getting around on the interface and is now surfing the web.  Obviously, the apocalypse is upon us.  I hope you're wearing clean underwear.

A lot of people think that I'm afraid for this procedure today.  I'm not.  Sure, the idea of someone slowly removing the blood from my system and then replacing it doesn't exactly sound appetizing, but I've been through much MUCH worse.  What I'm most anxious about is it working.  That's all I want.  I understand it will take a while and that this is just the beginning...  But if this doesn't work... THEN WHAT?

The doctors are starting to file in, I should get ready to go.  I haven't eaten anything since last night as per doctor's orders so I'm a little bit miserable.  There's also REALLY loud construction going on outside that is REALLY REALLY annoying.  Hopefully my room will be a little bit quieter and more conducive to some Netflixing.

See you on the other side, Ray.