no thanks

 Now that I've gone thru the events during my death last month, I wanted to let folks in a little more on some of the psychological effects of all this - and, as you might imagine they are many. And this is going to get extremely personal, so buckle up.  One reason I want to do this is catharsis for myself, but the bigger reason is that this might illuminate things for others who have friends or loved ones who have gone thru a terribly traumatic event and are having trouble in breaking thru to them.

Yesterday, I had 3 pastors over to my house- 3 men who I respect immensely.  They wanted to come over and pray with me because- simply put - I have not been able to pray or talk with God since this happened.  In fact, I have had an overwhelming amount of silence where God is concerned in this- He's just not there for me, and I have had no desire to talk to Him, either.  Why, you ask? Because I'm still very, very angry with God for what has happened to me. (I'll write more about that later.)

At any rate, I fully recognize that this absence and distance is not normal or healthy for me, so I was happy to have them come over to talk with me and pray for me- and, btw, one of the pastors that came over (the current interim pastor at my church) had given a sermon just a few days prior to all of this where he said that sometimes, we need others to believe for us in times of strife and stress.  That sermon meant a lot to me and means even more to me now.  So, again- I have to say another thank you to Pastor Tom and that message.

During this chat, I related what had happened to me to these men.  It's a story I've now related a hundred times (and I'm not tired of telling it!) but the insights that I got from these three just incredibly gifted me with something new and fresh.  And, as it happens, one of these men actually died from a sudden cardiac arrest about 8 years ago, so there was a kinsmanship there that would have been hard to find any other way.

I asked my friend if he had felt like I did after his revival- like I didn't belong here and why was I alive and why wasn't I thankful just to be here - and he had and still does.  The commonalities in our experience here were striking, to say the least, and it gave me a lot of comfort to know that I wasn't alone in feeling like I did.  He suffered the same levels of despair and depression after awakening, and didn't understand why he felt that way.  Now, mind you, I had already had that talk with the hospital chaplain about this being a normal response to trauma, but hearing this told to me from a very trusted friend who had been thru exactly what I had just gone thru added a layer of confirmation that probably couldn't be gathered any other way.

I did not and do not feel thankful for being alive.  Now, this not is a suicidal thing at all.  I just don't care.  My life has been turned upside-down and my health is so frail now, the question I keep asking is, "is it worth it?".  I feel like a complete burden to my friends and family for the simplest of things; I can't drive myself anywhere; it takes me 45 minutes to clean up and get dressed in the mornings; I spend all my waking time either watching TV or in doctors office; and I am in constant pain - it just plain old sucks.  Now, I want you to understand that I'm not having a pity-party in telling you this; I'm merely explaining why it is very difficult to have anything that even looks like "thankfulness" because this is all-consuming.  My wife, my family and my friends have assured me that I am not a burden, and the doctors have assured me that I will get better and life will return to some kind of normalcy, and I try hard to believe them- but it's difficult, to say the least.  Whenever I express these thoughts to others, their tendency is to try to equivolate their own experience in to this, and in the case of my wife, try to "fix it'.  In fact, almost every day she says to me, "I wish I knew how to fix this", and I know she can't.  No one can.  Although my mental state today is FAR better than it was a month ago, it's still difficult for me to relate to others and I'm still very distant and pre-occupied.

The general tendency of a supporter is to be kind of a cheerleader and aid and support your loved one in order to "fix it".  That attempt has it's place in all of this, but you no doubt face frustration when your damaged loved one just doesn't respond.  Talk like, "well. they're just depressed- who can blame them" and "they've been thru so much" occurs here, but that doesn't really tell you what is going thru our heads.  Yes, there is depression here, but it's so much more than that.

What is going thru our heads is 2 questions that come up over and over again, and there is no right or correct answer to it- "Why did this happen, and  how am I ever going to be the same again?"  Both of these questions sound very simple to answer when you haven't directly gone thru the trauma, but when it's you asking this for you, those questions are far, far deeper than you might imagine.

"Why did this happen" is a form of self-blame.  It's the worst case "coulda-shoulda-woulda" scenario.  It's not just a case of asking whether or not there was more you could have done to prevent the traumatic event, but rather, it's a case of feeling so terribly guilty that you hurt or terrified others by your "inaction".  For me, I spent the entire first 24 hours after being revived apologizing to everyone for putting them thru that- and even though I knew it was not my fault, the guilt I felt was just overwhelming.

But, it's the "how am I ever going to be the same again?" question that's really the most insidious.  Every trauma sufferer wants nothing more than to feel some small sense of normalcy, and we believe that the only way to do that is to return to our old life.  All of our efforts are to do that very thing, and it is an impossible task to do that in every, single case.  On top of that, if we did return to our "old lives", we all realize, deep down, that the "why" question is no longer really answered or is changed in such a way that the previous explanation is no longer valuable. 

These two questions go round and round in our heads in a never-ending battle.  And when we hear from our supporters that we need to "cheer up" or "move on", it becomes even more evident that we are alone in this quandary.  Lather, rinse and repeat........

I spent the first three days after being revived doing nothing but crying and apologizing.  I couldn't really hold a basic conversation, and I had absolutely no sense of humor.  (those who know me, know that I have a joke or inappropriate quip for all occasions)  The two questions I mentioned above were literally all I could think about- and I mean in a truly obsessive/compulsive way.  And it got MUCH, MUCH worse at night when I was alone with my thoughts in my hospital room.  It just spiraled and spiraled.  A lot of those 3 days I was pretty much catatonic.  I couldn't sleep.  I couldn't watch TV.  I could take no joy in anything.  I put on a brave face for my visitors, but I was dying inside.  When my visitors left, I was exhausted from the effort of trying to appear normal. (the manifestation of "how am I ever going to be the same again?" question)  For those that did come to visit me or talk to me on the phone during that time, please understand that all of what you saw was acting and fake, and the whole time we were talking, I was screaming inside my own head.  It's not that I didn't trust you to take my honest feelings- it was because I thought if I acted "normal", I would be normal.  Pretty stupid, huh?

I can confidently state that this is what is going on in every PTSD sufferer's head.  In fact, I'll guarantee it.  The inevitable question here is "how can I actually help?", and that is what I'm driving at here with all the context. Some of the answers here are obvious- don't act like you know what's going on in their heads or what they've been thru, but here's some not so obvious ones.  

• Don't push.  ALWAYS ask if we are comfortable in talking, and back off 100% if we say we aren't.
• Be there and present for us.  This does not require platitudes to accomplish- in fact, it doesn't require you to say anything.  Just listen.
• Don't say, "I can't begin to understand what you've been thru."  That makes us feel even more alone.
• Don't say, "It's gonna be ok."  It's not.  Life is different now.
• Don't tell competitive stories like, "you know, I know this guy that went thru what happened to you, an he said....."  because that just shows us how out of touch with us you are.  Second or third- hand story telling does nothing but make us feel worse about where we are at the moment when we hear someone else go thru it.
• Don't say, "You're gonna get thru this."  Because in our mental state, that is a lie.
• I know this might seem obvious, but unless you have suffered the same kind of trauma, it's very difficult for us to relate to you.  Every time you try and fail at this (or we fail with you) it makes us feel even more alone and speeds up the spiral in our heads.

I'm not saying leave us alone, but what I am saying is be prepared to leave us alone. Give us space.  But do keep trying. The thing you have to understand here is that what we've gone thru has caused a huge distance between us and the "shore of normalcy" and it takes time and effort to cross that distance.  It just doesn't happen overnight. 

As for me and how I'm doing now with all of this, I still struggle daily with those two thoughts.  One thing that was very helpful for me yesterday was that one of the pastors who came to visit me told me "yeah, Marc.  Let me confirm for you that you have lost your mind.  Your old mind.  You have a new one now, and you need to figure it out"  and that REALLY resonated with me.  My life is so different now, and it's never going to be the same again, and that is the context in which I need to operate.  That takes acceptance and patience on my part as well as the ability to forgive myself when I stumble thru these things.  I've heard that this will be a bumpy road, but I'll never know for sure unless I get on it.

I really hope that this entry helps someone who might be dealing with someone who has suffered trauma as I have described.  As I go down this road, I am happy to take questions, and together we can all find some of the answers.

what it's like to die - pt. II - the aftermath

 Sorry it's taken so long to get to part 2 here- there has been a lot of things going on here, mainly in the area of adjusting to a dialysis schedule.

In Part 1, I covered the higher points of what I saw during my death.  There were some finer points I left out- my wife called my son in Boston to let him talk to me one last time, and the fact that I did recognize some of the people on the hill as I was descending- family members that had passed on (my paternal grandmother, and my uncle Carl) and a couple of friends - but I was in such a hurry to get to the town, I figured I would catch up with them later.

At any rate, as I said I was in the ICU and I was intubated.  And, I had absolutely no idea of what had happened.  Oh, I remembered the "hovering" in the recovery room and seeing my wife and daughter crying, but the context of it was all scrambled.  I was sure it was still Wednesday, but I couldn't understand why I was intubated?  My left side hurt terribly and the right side of my neck felt like it was in a vise. 

Turns out that they had inserted a chest tube into my left lung to drain the 2 liters of blood that had gotten into it, and I had a sub-clavial IV (central line IV) inserted on the right side of my neck, directly to my heart.  They had sedated me, but they had also paralyzed me and restrained me so I would stop trying to tear out the tube.  Oh, and it wasn't Wednesday morning- it was Thursday around noon.

The intubation and neck IV were removed about an hour after I awoke and I could prove to the docs that I could breathe on my own, and a variety of other (painful) catheters were also removed, but the chest tube remained.

So, I was alive.  My wife was there and looked terribly tired and terribly relieved.  She went thru what had happened to me, to which most of replies were a very hoarse, "Really?".  It took me quite awhile to accept what had happened.

And then a very strange thing happened.  

One would think that if they literally dodged death, that their immediate reaction would be on of joy and thankfulness.  After all, I obviously had a family and friends that loved me very much, I had first-class health care and had been assured that I would walk out of the hospital under my own steam, and it was super-obvious that I must have some purpose left to fulfill by continuing living.  LOTS to be thankful for, right?

And yet, I felt none of that.  At first, I really felt nothing at all, neither good nor bad.  But as the hours wore on in the ICU, I started feeling more and more empty inside.  I also had this overwhelming feeling of "You don't belong here" and even though I wasn't wishing for death or being suicidal, I didn't really want to be alive, either.  It's so difficult to explain, and even now, a full month later, I can't hardly do it justice.  I described it to my wife like this:

"It feels like a big chunk of me is missing."

One of my closest friends, Paul, came to see me in the ICU.  Paul and I mess with each other all the time.  He walked into the ICU and said, "Dammit, motherfu**er, don't you ever do that to me again" with a big smile on his face, and my response was to burst out crying.  It wasn't from sadness and it wasn't from happiness at seeing my friend- it was because I actually felt NOTHING at that statement.  Not a blessed thing.

During times like this, my usual response is to cry out to God to help me.  So, I did that, and I got absolute, total silence as a response.  Nothing.  This deepened the feeling of being alone, immeasurably.

They moved me very early Friday morning to another room, and then to another room later that day, where I would be for the next 9 days, trying to recover.  For the first 4 days. my strength was completely non-existent- my wife literally had to bathe and shave me; I could walk no more than about 2 meters (and had to use a walker to do it) and then would have to sit for about 30 minutes trying to get my wind back; I was completely unable to feed myself and couldn't do the simplest things like rolling over in bed or adjusting my position in bed.  This just added to my despair, and I spent those first 4 days doing nothing but crying- especially when I was left alone.  It got so bad that my wife decided to stay at the hospital with me so I wouldn't be alone with my thoughts.  My nurses were very worried about me, too- they could tell this wasn't "me".

What I had never considered throughout this was this wasn't a lack of thankfulness or emotion, rather, it was the absence of thankfulness and emotion.  Yeah, I was alive, but I was emotionally wrung out like a dry sponge.  And the harder I tried to "come to grips" with it, the worse it got.

One day, the hospital chaplain popped into my room.  Turns out, my wife and the nurses had collaborated on getting this together, but didn't tell me.  After establishing that she and I would actually be able to talk (she was Episcopalian, so that was cool) we started talking about this "absence" I was feeling.  What she said was (and I had never considered this at all) that my reaction to this was coming from 2 places: I had just experienced MAJOR trauma and that I hadn't assembled all the pieces in my mind as to what had happened.  She also assured me that this was the most common response to these things, and likened it to a soldier who had just experienced combat.  So, basically, I have PTSD, and that is perfectly normal.  

This was a HUGE relief.  I thought I was going to completely lose it, but this is what it is, and it will take time to get thru it.  We're talking therapists here, and I'm 100% ok with that.

I was released on December 23, and on the drive home with my wife, I cried uncontrollably the whole way.  When I reached my couch in the living, I literally collapsed on it and cried like I have NEVER cried in my life for about 2 hours.  I was wailing and moaning thru most of it, and my wife could do nothing to give me solace except hold me.  Again- not sadness or happiness- and it wasn't all that cathartic, either.  It was just so completely overwhelming.

I managed to get to church for Christmas Eve service, and I wanted to do that because my church has been an UNBELIEVALBE support mechanism for me during this time.  It was also so good to be around people- that did help my mood a lot.  Christmas Day was very, very down (I never left the couch) and that Wednesday was my first dialysis treatment at the clinic.  My family had a small gathering for Christmas on New Year's Eve.

On New Year's Day, however, I started having trouble breathing and started experiencing chest pain.  Rather than mess with it, we returned to the hospital where an X-Ray and CT revealed that my lung had decided to start leaking again.  This required 2 more blood transfusions, another chest tube and another 4 day stay in the hospital.  I was finally released on 1/4 and have been home since.  I still cannot walk very well and my right leg (where they inserted the embolization catheter to embolize my lung) really doesn't work well.  My energy level is still darn low, but getting better.  My doctors are optimistic that things will turn around (I'm still not so sure) but we'll see.

The road ahead is steep and painful, but we're gonna tackle it.