Knowing Alone

You don’t know.
I’m glad you don’t know.
There are so many things I know that I didn’t know before.
I keep learning things that I don’t want to know.

It hurts to be alone with these things I’ve never wanted to know.

Still, nobody can know them except for me.

I know sadness. I know pain. I live grief. But I don’t know what to say to you about your sadness, pain and grief. I know that words never brought me comfort.  Not much has made sense in the AFTER. I’m not saying that there aren’t words out there that can bring someone suffering a loss some comfort and peace. But I don’t know what they are.

I just know what you don’t know.

You don’t know how the most innocuous statements can trigger me so unexpectedly.  Like when my son was in his honor choir concert and the announcer man was talking about the importance of music in schools and thanking all the parents for getting their kids to the extra practices on time because that is a “part of parenting”.  Fine statement, right?  But I started crying. Because getting my kids to practices doesn’t seem like “part of parenting” to me at all.    It seems more like being “part of cruise directing”.  Because parenting for me is not about the logistics of getting 4 different kids to different places at the same times.  I have so many wonderful people helping me with that part.  Parenting for me is living, in my mind, the worst possible case scenario for anything and everything that happens with my kids. The phone rings and before I can pick it up I’m already sitting at Harborview at the bedside of someone I love waiting for the doctor to call time of death.  Reliving. Parenting for me is listening to my youngest son cry “I want to be with you” when I’m walking out the door for the fourth evening that week and leaving him with a sitter because I either have to work or attend another one of my kids’ events that will run past his bedtime.  It’s wondering what sort of damage I’m adding to what’s already been done.

You don’t know the sadness that comes with the knowledge that my support group has grown too large.  There are too many of us.  There is a waitlist to get in.  You don’t know that as much as we all need that support group, every one of us is ready to give up our place so that nobody has to be on a fucking waitlist to get some help.

You don’t know that my mind races so quickly I can’t even keep up with the thoughts.  Or maybe it races so I don’t get stuck on any of the more horrific thoughts.  Like how every time my pre-teen son gets upset and slams the door to his room, I am petrified–beyond petrified–that he’s going to hurt himself–because of something I said or didn’t say and because it “runs in the family”.

You don’t know how it actually feels like a physical punch to my gut-it practically doubles me over in pain, every time I walk into the preschool and see an announcement for an upcoming “Daddy-Daughter Dance”.  I know that sign is posted there.  But it’s like a sneaky, scary monster hiding behind the door that jumps out at me.  I am startled by it,  every single time. You don’t know this because there’s no way you would.  What you see is my Kristen suit and a smile on my face as I greet my little guy who may or may not be happy to see me (depending on whatever matters to a 5-year-old at any given moment).

You don’t know how difficult it is to watch one of my kids do something really cool (like the honor choir) and know without a doubt that my husband would be so proud of him.  But how sad it is for my husband that he doesn’t get to be here.  Even more sad for my kids who don’t have their dad in the audience to support them.  I can be present at as many events as I can physically attend, but I can never make up for daddy’s absence at these events.

You don’t know how I can’t get good mental health counseling for my children.  Good counselors do not accept Medicaid.  Counselors will accept cash.  I will give them cash to help my children.  But then I sit through session after session wondering why I’m listening to this person who is not there.  Who doesn’t know.  At the end of the day, there is just me.  I am the only person on this earth that loves and cares for my kids the way I do.  At the end of the day, I am alone in this parenting.

You don’t know how my 6-year-old daughter’s counselor has been listing off the characteristics of a child with ADHD and I’m thinking–“Holy shit.  She’s talking about me.  I have ADHD”. Then in the next moment I’m sitting on my hands to keep from tearing my hair out because what does this ADHD stuff have to do with my child’s anger and grief? I am paying CASH for fucks sake.  PLEASE stop reading this book to my child about how all dogs have ADHD.  I’m about to scream.

You don’t know how counselors that I pay CASH for come up with ever-loving complicated “systems” of reinforcement and consequences for my kids.  They don’t know how asking me to pull together and maintain this “system” is maybe the thing that will put me over the edge.  But I still try.  They tell me that I need to put together a “simple” collage book with my child-one that’s all about said child and daddy.  Put it in a plastic baggie and close it with duct tape so it can never get dirty or wet.  WHAT?  I don’t have time to check my kids’ homework, let alone spend time ALONE with one child (what are the other kids doing at this time?) to make a book that they can’t ever take out of the bag?  Maybe this is my newly, self-diagnosed ADHD kicking in-but I don’t understand the sense of that.

You don’t know how much my body shook as I held my mother-in-law last weekend because she is going in for major surgery and I know she is terrified that she won’t come out.  You don’t know how I locked myself in her bathroom and cried because–oh my gosh.  Because of so many things.  My kids cannot suffer another loss.  I cannot lose her.  I have grown to love her and appreciate her.  We have a relationship. She is Jake’s mother.  Jake would’ve been by her side every step of the way, giving her courage and making her laugh.  I have no courage to offer.  I have fear.

You don’t know how much I hate myself for wanting to do things for myself.  I’m not just talking about a “nice bath” or a girls’ weekend getaway.  I am not going to pretend to be selfless or some kind of martyr.  I want things too-things that don’t have to do with the kids at all!  But I know kicking and screaming and flailing myself around on the floor doesn’t actually work.  I don’t know how to make it work and if I figured it out-would I just hate myself for actually doing that thing for myself?  In our modern American culture, people give you lip-service about how moms need to take care of themselves in order to take care of their kids–the whole airplane/oxygen mask thing.  But then society frowns upon moms who do just that.  Because how are we supposed to squeeze in “me” time between extra honor choir practices, birthday parties, “mandatory volunteer hours” (okay what the fuck is that even supposed to mean?), work, counseling, laundry, sports practices, math team, school projects that are supposed to be completed with “limited parental involvement”, all while making sure our kids are eating organic, well-balanced meals, brushing their teeth WELL, flossing (haha), showering WITH soap, changing (and/or wearing) underwear, and taking them on field trips to homeless shelters so they can truly understand how privileged they are?   I want more than that.  I hate how selfish that sounds.  But that’s my true confession.

You don’t know these things, because how would you?  Just like I don’t know you.  I don’t know what to say to loved ones who have lost (or are losing) their loved ones.  I don’t know what to say to strangers who are suffering loss.  I don’t know what’s under your suit-the things that hurt you and scare you.  But it’s so important that I realize that I don’t know and you don’t know.  The best looking, fanciest, perfectly creased, cleanest suit could be hiding fear, pain, grief, trauma, illness, anxiety, nightmares, sadness, panic, anger, guilt, regrets and more.  I wish I had known more about what was under the Jake suit before it was too late.

 

 

 

 

The Second Summer (mishmash)

This one may be hard to follow.  It is a mishmash of what my brain has been doing so far this summer.  Get ready with your coffee, beer, wine, whiskey, weed…whatever…and have a seat.

Summers are so fucking hard. They used to be the best! I loved summers. Now summers are full of birthdays and “anniversaries” (I should come up with a new word because “anniversary” implies something good….something lasting and special. People don’t say “Sad Anniversary”. Have you ever heard that? I’ve only heard “Happy anniversary” or “Congratulations on your anniversary”. None of these really apply, do they? For the purposes of this blog–I’m going to create a new word…hmm…suckyversary? Badiversary? Sadversary? Fuckedupversary? Oh–I like that one. Fuckedupversary. New word. Created by Kristen.)

Okay-back to business. First and foremost, I want all my readers to know that I never, ever think “poor me”. Do I get sad? Yes. Do I get angry? Yes. Have I thought “Oh sweet Pete, I will never escape this for the rest of my life?” Yes. But I refuse to have a “poor me” attitude. I do not want my kids to think that either. I do think “Poor Jake” (pretty much always). But no matter what I say in my blogs, I never think “Poor me”. I try to keep in mind–number one–things could always be worse…much worse. Number two–Shit happens in life. I can choose to wallow in whatever comes my way, or I can choose to get out of bed every day and keep living–with a positive outlook. I can’t control everything the universe might throw at us. But as long as I have hope…I have enough. I do have hope. I have dreams, I have goals. I want my children to grow up and learn from watching me…..learn that bad things can happen, and some people have more than others, but this is it. We power through and remember bad things could be worse and more people have less than we do. Some people might take this the wrong way, but we are lucky. I believe that. So anyway-that’s all about a “disclaimer” I wanted to make about what I write. I might write about sadness, anger, guilt, shame, grief, etc.–but that never equates to “oh, poor me”. I’m just talking about my feelings and how we get through life without Jake.  At least that’s where I’m at today.  That’s good enough for me!

One of Jake’s best buddies, carried some of Jake’s ashes to the highest point in North America-the summit of Mt. McKinley.  I feel very fortunate that he had his fellow climber take a video as he spread Jake’s ashes.  For me, the video is intense and brings on goosebumps and tears.  But, when I watch it, I also experience a feeling of relief and maybe even happiness?  I watch it and know with everything in me that it was perfect for Jake.  At this point in time, there is no place else Jake would prefer to have his ashes spread.  If he were alive, he would want to be up there with his buddy.  That’s the kind of stuff that Jake loved and dreamed about.  It was perfect.

I have watched my 8-year-old son grow progressively more angry and destructive over the past two years.  He says things to me like “Why don’t you just run me over with the car?” and “I hate this life”.  He thinks he is angry about something so minute, like a pizza crust, but I know his anger comes from a much deeper place.  For Fathers’ Day this year, his classroom project was “Five Things My Father Taught Me”.  This is what he wrote.

Owen's 2016 Fathers DayOwen 2016 FD 1Owen 2016 FD 4Owen 2016 FD 3Owen 2016 FD 5Owen 2016 FD 6

 

To anyone outside of our family, this may seem like a perfectly lovely project and what a wonderful job completed by my son.  However, I look at these pages and it tears my heart to shreds.  It tears me up because Jake did not teach my 8-year-old these things–at least not all of them.  The very first page–the one about math-yes, Jake did teach him math at a very young age.  But, that’s all my son could remember about what daddy taught him.  Because the rest of the pages…do not apply to Jake.  By no means am I disparaging Jake.  Jake was an incredible and wonderful dad.  But, I know my son did not learn these things from him. My son struggled so hard with this project that he ended up copying a friend’s work.  There is no way his teacher or anyone else could have known this.  But I knew it as soon as I saw it.  I picture him sitting at school trying to complete this project and not being able to come up with anything besides math. No wonder he is angry. He doesn’t recognize on a conscious level what experiences like this do to him on the inside–to his heart and soul.  His entire existence was changed in the instant I told my babies that their daddy died, but he doesn’t think like that.  He just thinks he is pissed about an uneaten pizza crust–so pissed–that his body is shaking and he is ripping up grass and throwing around giant surfboards.  Well, guess what?  There are times I hurt so badly, I miss Jake so much–that I actually want to destroy things.  I want to lie on the grass and start clawing at the earth.  I want to punch walls and throw things.  So, I get it.  I just want to pluck that hurt and anger right out of him and I’ll take it all on myself.  I wish that I could do that.

This summer, I had the chance to visit with people I haven’t seen since last summer, which happened to be” The first summer” in the AFTER.  This year, (the second summer in the AFTER), I heard from quite a few people who mentioned that I seem so different from last year.  They were happy to see me smile, interact, and engage.  These people love me and they also recognize that this doesn’t mean I’ve “graduated” from my grief.  It just means that when they last saw me, I was withdrawn, sullen, and had a very flat affect.  I know that last summer I was still stuck–stuck in a fog filled with disbelief and wishes that I could go back in time.  I honestly couldn’t relate to anybody.  Couldn’t focus.  Couldn’t attend or engage.  I will never stop grieving for Jake.  But, people noticed a difference.  I’m still ditzy and forgetful.  What was important is that the changes people noticed were positive! They saw positive changes…in me.  Smiling=positive. Interacting=positive.  Engaging=positive.  I will gladly embrace the differences that people observed.  That is the direction I am working towards.

Recently, I’ve been thinking about my mother and her circle of friends.  Her best friend (let’s call her “Elle”) passed away several years ago.  During “Elle’s” long illness, my mother was frequently flying back and forth from Seattle to New Jersey to take of her dear friend.  When I was growing up, “Elle” was like family to me.  I remember my mother in the kitchen, chatting away on a phone that still had a cord(!), to “Elle” for hours on end.  They showed up at each other’s homes without calling first.  They had a very special friendship. I found myself feeling down when I was thinking about my mother and “Elle”, because I don’t have an “Elle”.  I have so many friends and I love them and they love me.  But it’s not the same as it was with my mother and her friend.  Then I realized–Jake was my “Elle”.  He was that comfort and closeness and special person.  When he was sick, I took care of him.  When I was sick, he took care of me.  Sad, happy, silly, angry, funny or otherwise–Jake was the very first person I called.  (There are actually still times when things happen and my immediate thought is to call Jake and tell him.)  I had my “Elle”.  I lost him.  I just want everybody to appreciate your “Elle”s.

The dreams.  Lately, I’ve had an abundance of dreams about people who have passed away.  In my dreams they are very much alive but there is also some pervasive thought throughout the dream that says “Wait a minute–this can’t be. You’re not alive anymore.”  When Jake and I first started dating, he had a motorcycle.  It was yellow.  He sold it not long after I met him.  That motorcycle has been in the background of my dreams.  Every night my two littlest ones sneak into bed with me at some point.  Last night I dreamed that Jake was standing at the foot of the bed-watching over my little girl.  For almost two years now, I have believed in nothing. Death is the end.  There is no “heaven” or “other plane of existence”.  I have wanted to believe in something else.  I have wanted to believe so, so badly.  But the more I learned, the less I believed.  I recently had a conversation with a childhood friend (she happens to be “Elle’s” daughter), and she believes.  She has faith.  She told me about her thoughts and beliefs in a way that wasn’t preachy or condescending, and so I listened respectfully, but skeptically.  This amazing girl (well, she is a woman now–but she’ll always be the girl around the corner to me!)–without even trying–has me wanting to believe in something again.

I’ve been thinking about a lot of people.  Most people I know have been through some really rough times.  Some people are still going through them.  The people who inspire me, the people I admire, the people I enjoy being with are the people who are going through shit I can’t begin to relate to, but remain positive, even while they are hurting, grieving, suffering, etc.  Everyday, I work hard to “be like them”.  I don’t know if you folks all know who you are (there are a lot of you!), but you guys are my personal heroes.

Proof

Jake Valentine 1 insideJake Valentine 1

I came across this yesterday and can’t let go.  This. This is my proof that the Jake that I knew and loved existed.  Very accurate picture portrayal of the two of us–I have to say!

Some days I walk around in a fog wondering “How did I get here?”, “How could Jake be gone?”, and most disturbingly “Was he ever here in the first place?”.  This is my proof.  This was my Jake.  He was here.  And now he is gone.

I’m still extremely angry.  But, my anger is directed at Pfizer (maker of Chantix) and the Federal Drug Administration.  The number of suicides directly linked to the drug, Chantix, is staggering.  We’re talking thousands of people who have taken this drug, reported suicidal thoughts, and/or committed suicide.  These “adverse effects” have been reported in patients who have taken the drug for as little as two weeks.  I believe Jake was on it for 4-6 weeks.  In that last month, he wasn’t my Jake anymore.  He was a walking depiction of every “adverse effect” listed in the “black box”.

I copied the following directly out of the medication guide I found in Jake’s office after his death:

“Some people have had changes in behavior, hostility, agitation, depressed mood, and suicidal thoughts or actions while using Chantix.  Some people had these symptoms when they began taking Chantix, and others developed them after several weeks of treatment, or after stopping Chantix”.

What the FUCK?? SOME people?

“If you, your family, or caregiver notice agitation, hostility, depression or changes in behavior or thinking that are not typical for you, or you develop any of the following symptoms, stop taking Chantix and call your healthcare provider right away:

  • Thoughts about suicide or dying, or attempts to commit suicide
  • new or worse depression, anxiety, or panic attacks
  • feeling very agitated or restless
  • acting aggressive, being angry, or violent
  • acting on dangerous impulses
  • an extreme increase in activity and talking (mania)
  • abnormal thoughts or sensations
  • seeing or hearing things that are not there (hallucinations)
  • feeling people are against you (paranoia)
  • feeling confused
  • other unusual changes in behavior or mood”
Jake experienced every last one of these adverse effects.  He did as directed.  He went to the Emergency Room on a sunny Saturday afternoon in August (4 days BEFORE it happened).  I was with him.  I heard everything he told the doctor and the social worker.  He told them he had been taking Chantix but had stopped.  (Please refer back to above warning listed above that some people have developed these effects “or after stopping Chantix”.  Jake told me, the doctors and the social worker that he never, ever in his life had a thought about killing himself until he went on that drug.  Jake was not seen by a psychiatrist that day.  The social worker gave him a pamphlet telling him to take a walk or a “nice bath” when he was feeling sad.  She also told him to start calling psychiatrists on Monday to get an appointment. Wait. What?
I could dissect everything I’ve mentioned so far into all of the things that are so very wrong about this story. But that will take a hundred more blog posts.  On that Tuesday, the 26th, Jake went to another doctor.  He went to see the doctor who had prescribed him the Chantix.  The primary reason listed for the visit was “Major depression”.  I don’t know exactly what transpired, I only have medical records to rely on.  But this doctor also let him go.  That day he ran 14 miles.  He was able to make an appointment with a psychiatrist for Thursday August 28.  But on the day in between–Wednesday, August 27th, 2014, those “adverse effects” got the best of him.
Why the fuck is this drug still on the market?  Pfizer holds no liability in Jake’s death, because he was “warned” that he might kill himself while taking it.  This is okay with the FDA? Several years ago children’s cough medicine was pulled from the shelves because a small group of parents weren’t following the dosing instructions accurately.  A few years ago, my favorite weight loss pill ever was pulled from the shelves because one person in Hawaii didn’t follow the dosing instructions and developed kidney failure (I miss you my magic purple pills…).  How does the FDA justify keeping a drug that actually causes people to kill themselves on the market?  Thousands of people (even more if you count loved ones) have been affected by this drug in the worst ways possible.  Oh, I remember now.  It’s because they put the warning about these “adverse effects” into a black box so physicians who prescribe or treat people using the drug will know what to look out for.  Yeah.  That worked wonderfully for Jake. Two doctors with their little black box warnings and they just said “take a relaxing bath”.  Another major issue with this drug is the insurance companies.  Most insurance will cover the cost of Chantix itself, but will not actually cover the cost of the doctor’s visits in order to monitor the patients taking the drug.  Everything.  Every little thing about this drug, is so wrong.
I might be biased because it is ultimately what took my husband’s life.
My brain gets stuck often on what happened to Jake.  The details of the time immediately before, during and after what happened run through my mind day after day.  That’s why I need to keep finding cards like the one I posted.  Because that was my Jake.  That’s my proof and a reminder to try hard to remember more of that Jake.
This is not over people.  I may not have cause to sue Pfizer or the doctors who “treated” him.  But I have a really big mouth (I’m a Jersey girl after all) and I am going to be talking.  A lot.

Birdhouse In Your Soul

The nightmares started right after the 6 month mark.  Most of them don’t include Jake, but they are all very scary and very real.  The nightmares come most nights, if not every night.  I wonder if they will ever go away now.

At the 6 month mark, I was a complete mess.  Then, one day I woke up and decided that I wasn’t going to be a mess anymore.  I made the choice to “block” everything-every thought, every memory, every scene from the constant movie in my head.  Every time I started thinking about it, I imagined a gigantic door slamming shut on the memory and all I could see was the door.  As any reasonable person could imagine, the “blocking” technique couldn’t last very long.  After a few days, I found myself sobbing-all day long.  I couldn’t stop.  Hmm.  I wonder why?  Yet, I continue to use this blocking technique without even thinking about it.  I noticed myself looking the other direction when I pass by one his pictures.  If I happen to catch a glimpse of his picture or something that reminds me of him (which is pretty much everything because I still live in our home)-it literally takes my breath away and brings me to my knees.

Last weekend we had beautiful weather.  I had been avoiding the backyard since last August.  I would watch the kids and the dog from the window, but pretty much didn’t like to be out there.  If I did have to go out there, I consciously avoided looking at “the” tree.  But last weekend I went outside.  It was like the tree was a magnet pulling me to it.  I couldn’t stop even though I knew it was a bad idea.  I stood behind that tree and I’ll admit, I went a little crazy.  I examined the tree, ripped off the bark, dug up dirt and logs…and stared at it.  I knew I should move away from the tree but I felt glued to that spot.  All of a sudden I wanted to know more about that day.  What Jake saw, heard and thought.  How many emergency vehicles were here?  How many people?  Did they have their sirens and lights on?  How fast did they get Jake out of here and on his way to the hospital?  Was Jake conscious when they left?  I don’t have answers to these questions.  They are not important for me to know-I realize that.  But sometimes, I feel like if I don’t find out I am going to go insane (I’m partially there—I get that).  Eventually, something happened that got me moving away from the tree (I had to use the bathroom) 🙂 I came inside, the spell was broken and I didn’t go out in the backyard again.

This week, as we were leaving their counseling sessions, my oldest son (age 10) said to me “You know mom?  I feel really terrible saying this-but I don’t think about daddy all the time anymore.  I’m ashamed of that.”  I hugged him and told him that was fine.  However he felt was okay and he didn’t need to be ashamed or feel bad.  Inside though, I wanted to scream.  How could he not be thinking about his daddy ALL the time?  What was I doing wrong?  Jake’s pictures are everywhere, we talk about him a ton, there are memories in our face everywhere we turn….but maybe it’s because of those things that my 10-year-old son is not obsessively thinking about his daddy (the way I am)–Maybe it’s because my son is not slamming that gigantic door on the memories, that he is actually able to live his life.

I want to live my life again.  I don’t want to just exist, go through the motions and obsess about the memories.  Every day, I tell myself-this is the day I start really living again.  I even tell other people about this–so that maybe I can’t “back out” of this plan–like I would do if I were starting a diet or something.  But really, I’m just putting one foot in front of the other still.  When people tell me I’m strong, I want to ask “What do you see as strength in me?  Were there other options?”  If so, I wish someone had told me.  I probably would have chosen Door Number 2.

The “Kristen Suit” comes off when I am sleeping.  Maybe that’s why the nightmares are coming.  People might think-“Sheesh-Kristen is messed up.  I hope she’s talking to somebody.”  Yes-I am in counseling.  But I often wish it was just a matter of a drug or procedure that would make me forget-forget those few days that overshadow my life and let me remember all of the good stuff instead.

Another holiday is coming up.  Easter.  I want to skip it.  In years past, I would make the baskets and fill the eggs.  But Jake would go outside and hide all the eggs and come inside and hide the baskets.  Then on Easter morning the six of us would go outside and search for the candy-filled eggs (which I would throw away as soon as the kids weren’t looking–not because of the sugar–but because of the clutter!)  I don’t know how I’m going to do Easter–the prep, the hiding, the finding (I’m fine with the throwing away).  But shit.  Why do we have to have so many holidays?  Why did we ever start traditions?  I hate our traditions now.  But the kids still love them.  They look forward to them.  They need them.  It’s all about them now.

“Blue canary in the outlet by the light switch-who watches over you?” One of Jake’s top songs-They Might Be Giants.  Needing the birdhouse in my soul to stop the nightmares and help me start really living my life again.

 http://wwIMG_0937w.youtube.com/watch?v=NhjSzjoU7OQ

Jake’s Toothbrush

IMG_0658This is Jake’s toothbrush.  4 months and 21 days after.  I have not moved his toothbrush.  I am very much an “anti-clutter” kind of girl.  I get rid of everything I possibly can.  Sometimes I sell my kids’ toys right out from under their noses (or pried from their hands)-because I don’t like clutter.  I cannot do anything with Jake’s toothbrush but look at it every single time I walk in the bathroom.  In a way, I’m still waiting for him to come home.  I can sit at the window for hours and search the yard for him.  Longing for him to come walking out of the bushes or something.  Every day, I check all the rooms in the house–looking for Jake.

Yesterday I saw someone I hadn’t seen in awhile.  She mentioned that I looked “good”–like I was getting “over” stuff.  I almost vomited.  I wanted to scream at her about my “Kristen Suit”.  Instead I just shook my head and said “No”.  I will never, ever be okay.  I will never “get over” this.  I don’t care what you think you see on the outside.  On the inside, I am a completely devastated, messed up, different person.  Don’t let the Kristen Suit fool you.

My youngest cousin was killed in a car accident a few weeks shy of her 18th birthday in 2010.  I remember talking to my uncle (her father) and something he told me then struck me.  It struck me then and it continues to haunt me to this day.  He said, “I’ve been sentenced to a lifetime in hell”.  Although you cannot compare the grief and loss between two people, I get that now.  For me, the hell isn’t just about the loss.  It’s about what I could have done differently so that this didn’t happen.  I torture myself with the thought- “If I had only turned right instead of left”.

In the months since I lost him, (which is a stupid thing to say actually–if something is “lost”, there is the implication that it might be “found” again).  Stupid phrase.  I just decided I’m not using that expression anymore.  In the months “after”, I learned more than I ever wanted to know about death, probate, attorneys, medical records, etc.  Although I am his wife, I didn’t have access to anything that his name on it.  For example, did you know that medical records can only be requested by the patient himself?  Well, if that patient is deceased, you’re SOL.  You need court paperwork–piles of paperwork to have access to anything with your spouse’s name on it.  Did you know it costs money just to DIE in King County?  Because Jake died in King County, I actually had to PAY a fee to the county!  Every account with his name on it, required a death certificate–which also cost money.  I believe it cost me $200 to get enough death certificates to cancel Jake’s various accounts. The best thing (and this is sarcastic) is how you can call the same company 20 times and explain the horrid circumstances to 20 different people, and those 20 different people will all tell you something completely different and when you call the 21st time–there are no notes or records that you have ever called before.  This is a true story and it happened with multiple companies-not just one.   I told Jake’s best friend that I never wanted to talk on the phone or be put on hold again.  Ever.  Entire days were spent on the phone.

Initially, people I spoke with were perfectly nice and made me promises that were never kept.  When I called one of Jake’s credit card companies, they told me that they were just going to write off the balance he owed (the card was in his name only).  Well, that didn’t happen and that credit card company is going after Jake’s “estate” (which is a funny word–makes us sound like we actually have money or something).  Jake also had a leased vehicle in his name only.  It had about a year left on it-but when I called the car company, I was told that I could just return the vehicle and they would take care of it–I wouldn’t owe anything else.  I was so relieved and in tears after phone calls like these–only to find out that none of it was actually true. Not only were the car people extremely rude upon return of the car, but they are going after the “estate” as well.  Apparently they put the car up for auction and then the estate owes the different between what they get and what the car is worth.  WHAT?!? If someone had told me that, I would have kept the car and made the payments for another year.  The car was a lease–why do I now have to pay for the car outright?  Grrrr.  That car company lost my business forever.

I know in the “About Me” section, I said I wouldn’t be giving any advice.  Well, I’m going to take that back for a minute and just offer three pieces of advice–because you never know.

1. Put together your last will and testament.  We didn’t have one.  I know the thought of it is upsetting, but it can save you and your family.

2.  If at all possible, get life insurance.

3.  Make sure you put aside money in order to pay King County a fee just in case you die here.

AFTER (Part Forever)

I lived in the Neuro ICU for almost 4 days.  The time of death was called less than 24 hours after he arrived at the hospital, but they were working on keeping his organs going because he was an organ donor.  I wasn’t going to leave. I never left the unit. I sat with him, I held his hand, I cried a lot…some of my friends even helped me climb into the hospital bed with him so I could sleep with him one last time.  I understood that many of his organs were going to be donated and there were recipients all lined up.  That gave me some comfort.  However, at the last-minute I was informed that there were some complications and they would be unable to donate any of his organs.  Complications?  Jake had run 14 MILES for fun the day before this all happened.  His organs were perfect.  All of his beautiful, healthy organs.  But, Jake wasn’t going to save the lives of others.  All of the disappointed families.  Shattered me into even more pieces.

From the time I received the first phone call, everything seemed to happen in a fog.  I remember telling myself “No, no, no, no, no–this is not really happening.  This is not your life”.  My brother was the first to arrive at the hospital.  I had a very hard time getting there.  It’s not like we see on TV–where the police officers are all compassionate and offer you a ride.  As I rolled around on the floor of the police station, wailing and screaming, the police officer basically shrugged his shoulders.  He said “If I were you, I’d hop in the car and head down there”.  WHAT?!? You are advising me–in this state–to get in my car and drive into downtown Seattle, during rush hour?  It didn’t make any sense.  There was no “I’m very sorry ma’am”–no explanation of what had happened.  Just a shrug of the shoulders.  I will never, ever forget that.  I will also never forget the kindness of a stranger standing nearby who offered, and then drove me to the hospital.  I hopped out of her car at the ER doors and never saw her again.  But I think about her all the time.

As I mentioned, my brother was at the hospital in a private room with a social worker.  I thank God he was there.  I vaguely remember surgeons coming into the room and apologetically telling me that surgery wasn’t an option.  I still didn’t understand.  I remember asking “So that means he could make it?  He might live?”  Their small sighs and sad faces were all I needed to see to know I was clearly mistaken.  Again, I ended up curled in the fetal position on the floor, wailing.  My brother was there.  He was always there.  From that point on, he took care of everything.  All of the gruesome, scary, terrible tasks that needed to be taken care of–my brother did it all.  I love my brother, but his strength and character has astounded me since then.

From that point on, things are very hazy for me.  I remember A LOT of people coming and going throughout the next few days.  Loved ones who brought me water and changes of clothes and soap so I could take a shower in the physician locker room.  People holding my hand, rubbing my back, crying with me,  I remember that first night there was so much blood.  Way too much blood.  Giant puddles of it under his bed.  His face was also covered in blood–he didn’t even look like my Jake.  Thankfully, the next day someone cleaned him up a little bit, and from that point on, I was there to wipe off every trickle of blood that showed up on his face.

I know for all those days, I begged and pleaded for him to come back.  I didn’t understand how there could be a world without Jake in it.  I still don’t.  When the organ donation people sat me down and shared that Jake’s organs were not going to be donated, they cried with me.  After awhile, they explained to me what was going to happen next.  They would turn off the machines that were keeping his organs alive, but his heart may still beat for a little while.  Still–in my head–I had some hope.  Maybe this is it.  Maybe he will start breathing on his own and we’ll have our own little miracle.  I laid on the bed with him.  I put my head on his chest.  The nurses looked at me before they turned off the machines.  Then they respectfully left the room.  My mother and aunt were there with me-but I asked them to leave as well.  I needed to listen–I needed to hear his heartbeat.  I cried quietly as I did just that.  I listened to his heartbeat for a while before it slowed down–and eventually stopped.  I stayed there for a long time.

I don’t think it actually ever occurred to me that I would have to leave the hospital.  It felt like that was the world I had always lived in–how was I going to function outside the Neuro ICU? I didn’t want to go.  It was a strange feeling–one I still don’t fully understand.  The darkest hours of my life so far were spent there–yet I didn’t want to leave.  I remember shaking like a leaf and nearly vomiting with every step I took closer and closer to the elevators.