The Words Between the Worlds
I'm just trying to mark time until the clock stops chiming. If you can't remember it, did it really happen?
Saturday, July 25, 2015
Where did it go wrong? part 1
Friday, May 8, 2015
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.
Tuesday, November 4, 2014
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.
Thursday, July 10, 2014
You Can See The Sun Shining if You Really Want to
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.
Wednesday, February 26, 2014
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.
Wednesday, February 19, 2014
Anonymous Letters
Thursday, January 30, 2014
Welcome to the Shit Show
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.
Monday, March 18, 2013
Everyone has a sad story. It doesn't excuse anything.
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.
Sunday, February 10, 2013
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.
Friday, October 12, 2012
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.