Wednesday, February 26, 2014

Life Beyond the Crossroads

"I get it, it’s nice up here.   You could just shut down all the systems, turn down all the lights, just close your eyes and tune out everyone.   There’s nobody up here that can hurt you.   It’s safe.   What’s the point of going on?   What’s the point of living?   Your kid died, it doesn’t get any rougher than that.   It’s still a matter of what you do now.   If you decide to go then you just gotta get on with it.   Sit back, enjoy the ride, you gotta plant both your feet on the ground and start living life.   Hey, Ryan, it’s time to go home."
Matt Kowalski (George Clooney), Gravity

Perhaps it's fitting that the very final moral to the story I have for you will post during Eating Disorder Awareness Week, but that was purely coincidental.  It does illustrate perhaps that for all us there are some things we'll never move past.  For my family, we'll never get to the last week in February and not know what significance it carries for us.  We'll never treat June 20th like any other day.  We'll never, I know now, have significant life events (graduations, weddings, births and even deaths), and not have the fact that my oldest daughter isn't there with us heavy on our minds.  But, the thing I can tell you now, more than four years into this brave new world is that there is life after loss.  And it's important to leave you with that.  And it's important that all of you know that.

I would guess that for some who might read this immediately after losing a loved one, that statement will seem like a betrayal.  I've been accused of that actually:  betraying Kelsey's memory by attempting to move on past the loss.   Here's the thing I need you - and all my own critics if they care to listen - to know:  don't confuse moving past the shock of the loss and continuing to live the one life you've been given with not loving and missing your loved one.  They are NOT the same at all.

Think of the rest of your life.  More importantly, think of the people in your life.  I was accused this very morning of not caring about those people actually.  But, really, nothing could be further from the truth.  I care about them very much and, maybe for that reason above all others, I had to finally pick myself up, dust myself off and learn to carry on.  Do I have fun sometimes as a result?  Yes, I freely admit to you that I do.  Do I sometimes get pinged by guilt when I do?  I do sometimes still, yes.  Not as much as I used to, but I think there will be times when I feel a little unworthy of any kind of life because I lost a child and that will always seem like such an unnatural thing.  But I have always held on to the belief that Fate plays into all our lives and there is a reason I am left behind.  If it's just to be a parent to Marissa and then maybe a grandparent to her children someday, or if it's something more global, I'm not sure.  But, if I'm a shell of a person, then I cheat that purpose.  So, yes, I go to Rush concerts, I go to hockey, football and baseball games.  I go to the symphony.  I am a member at the Pittsburgh Zoo.  I love this town and indulge in the many wonderful things it has to offer as much as I can.  And I've seen and experienced some truly amazing things as a result.  In many ways I am blessed.  That may seem truly obscene to have me say if you're still new to the journey that grief is taking you, and I understand, but here's how I reconciled it:

In the history of mankind, mine is a small sorrow in a deep ocean of sorrows.  Think of all the heartache humans have endured through history.  Whether it's been at the hands of nature, like the leveling of Pompeii to the cruelty of other humans, like the Spanish Inquisition and the Holocaust, we've had to rise from the ashes of some true horrors and move forward.  And we've done it.  We've shown that we're stronger than the things that attempt to destroy us.  I am as well.

I miss my daughter every day.  Granted, there are things I don't miss.  She could be a total pain in the ass:  opinionated and rude about it.  She saw things in very black and white hues, she never got the chance to mellow with time and learn that the world is all shades of gray.  She was human, so she was flawed.  I am human as well, so our relationship was flawed, but that didn't and doesn't diminish what she means to me.  But I have learned that I carry her in my heart, and as long as I do she lives there a little.  So, at the end of the day, after a lot of time and a lot of work, I can go forward and have some sense of a true life, knowing that she is with me as I do.

So, in closing, if you are wondering if you can ever experience any emotion besides grief again, please trust me that you can.  Allow yourself to.  It's okay to do that.  I believe in my heart of hearts that your loved one wants you to.  It doesn't mean that you've forgotten them.

Thursday, February 20, 2014

Country v. Crosby?

I contemplated the hard decision I had to make and wrote about it in my new blog.  You should visit me there to see what I decided.

Saturday, February 15, 2014

Finding the New Normal

We're almost there - all the "wisdom" I can impart to you about life after loss.  I hope that all of you who have stuck with me through all of it will migrate with me over to my new blog, Burgh-a-Story.  It does give me a fresh start in many ways to talk about lighter topics and have some fun.  But I'm the same person and the same writer as I am here, so some of the themes I've concentrated on here will seep over there - just with some more sports.  Yet, that's sort of counter to the whole point of this post:  we're not the same as we were before and our lives are not either, so the challenge is to make peace with that.  And that's the complexity of what I've found, really.  I still love the things I've always loved, for the most part, but my perceptions are different, and I react differently to the same things than I've done before.  I've made the analogy before that we're like china that was broken and then glued back together.  I used that at the time to explain we're easier to break once more, but it's also about not quite being as smooth as we once were.  At least that's true for me.  But, it's not just about the inner you, it's about the outer trappings too.  Everything seems different when you look around you.

As I walked the dogs around the block yesterday for the first time in several days (which was probably not super smart - I hit the cold air and realized my face was on fire and I was sweating, so I guess the flu bug hasn't left yet), it occurred to me that the biggest thing the move to Pittsburgh did for me was give me the chance to fold adjusting to life post-loss to adjusting to a whole new environment.  Everything around me was different, so I could concentrate on learning where to buy beer and how to get home from Heinz Field (sounds odd now, but that was not so easy at first) and it was less about how to reconcile a new life in old digs.  I wonder how anyone does it in the same house, actually.  Remember those people who lived across from me who lost their son?  They made major changes to their house, and you wonder now if it was less about updating an older building than it was making it different for the same reason some of us move away.  Maybe they didn't even know that's why they did it - they just felt compelled to make changes.  I never saw our old house after a lot of the remodeling was done, but Marissa did and we've talked about it since.  She's told me it still seemed off somehow and wasn't a pleasant place to be (I'm paraphrasing).  I think for us, the big difference is that so much had gone horribly wrong while we were all in that house that there was just no saving it for us.  I don't care what you updated or how, but it would always be the same walls that housed so much fear, hate, illness and finally grief that it would have kept us trapped in those emotions for much, much longer.  Which is seriously too bad because it was a wonderful house.  In some ways it was my dream house - big lot, pool, that stunning chandelier in the living room with its pine planked ceiling that is like a scene out of Game of Thrones.

Now I live in a much smaller, plainer little house with no pool and a chandelier I was planning on replacing until I found out it was original to the house and then felt compelled to keep it.  It's okay, but it's certainly not Game of Thrones worthy.  And yet, I'm so much happier here.  Of course, there are other reasons for that, and for those, you should read my new blog (hint, hint).

Yet, I've wandered off the mark a bit.  This isn't about moving or houses.  It's about realizing and accepting that things won't ever go back to the way they were before.  Maybe that seems like the most inane and obvious comment anyone can make.  But, I can tell you, I spent a lot of the time in the early months wondering how long it would be before things got back to "normal".  I used that word a lot, like a touchstone.  Therefore, it was important for me to accept that there wasn't any going back, there was only going forward, and that path would look different.  I had to learn to be okay with that.  For me, in order to accept that, it was easier to shake the whole scene up as dramatically as I could without moving to a whole other country (although in some ways, it felt like I had at times).  Many people won't be able to or want to, I know, and maybe, for them, comfort is in being around the things they've always known.  I can see how that would be.  But, for all of us, with the important caveat that anything I say is only as good as my personal experience, the thing we must accept before we can fully carry on is the fact that there is no going back to normal.  If you're looking for life to return to how it was before, then you'll never stop looking.  Once you can wrap your head around and, way more importantly, make peace with what your life is now you can settle into a new normal.

How you do that is different for you than it was for me.  A lot of trial and error probably.  I got lucky.  I got Pittsburgh.  And that's a new normal I can learn to live with.

Friday, February 7, 2014

There Are No Shortcuts, Only Wrong Turns

Unless you’re willing to have a go, fail miserably, and have another go, success won’t happen.
Phillip Adams
So on to almost the last of my lessons for you:  which is that there are no shortcuts on the journey of grief.  And you will pay the full toll.  The other thing that book I was so horrified by tried to tell me is that there would be a long journey before I could claim to feel a little better.  The author herself claimed four years.  At the time she might has well have told me a century!  I didn't have four years to give to my grieving!  I had all those other obligations I mentioned last time.

Well, here I am, well over that mark, and I still have days that kick me around.  Moments that trigger me.  As I was watching figure skating last night, I had to be honest and admit, for the first time ever actually, that I didn't fall away from that sport because Michelle Kwan isn't in it anymore:  I can't follow it slavishly like I did because Kelsey was a skater, and it was because of my pushing that she was.  I've taken back, gradually, a lot of the things I once couldn't face because they reminded me way too much of her, but there is still that one.  Maybe after Meryl Davis retires I can conquer that one, but not right now because, I'm sorry, she doesn't look healthy to me.  Maybe she just has a natural dancer's build, but whatever, it's triggering to me, and little girls watch her and want to be like her, and I'm a little freaked out by that thought, just honestly.

Anyway, whatever I did to shorten the grieving process just dampened the flames in one location, only to have them pop up some where else.  If I lost myself in hockey, there was a lockout, and I was left alone with my thoughts.  If I just tried to power through it, I would end up snapping at people or generally losing it.  I moved clear across country.  Sure, I tell people I did for the sports, and I did.  And for my family, and for the fact that I just love it here.  But, let's all face facts, I did it because my house was haunted and ruined for me.  For all of us.  Moving was the smartest thing I did I think, but the grief followed.  In a way that was a good thing because in those first months when I was living here alone with Cheyenne, I really faced it and dealt with it in the quiet hours.  And that's when I think I knew the truth, and the one thing I can tell you that is an absolute:  you just have to do the work and spend the time.  Trite maybe, but fitting, to say that there simply are no shortcuts.  And any you try, whether they're "healthy" like throwing yourself into causes, or destructive, like drinking or drugs, will not save you from that.  At some point, you'll either sober up and still have to face the grief that sat patiently waiting for you, or you'll die too.  I don't have a lot of statistics to back me up, just anecdotal evidence and my own personal experience, but you can take what I say to the bank.

If you're like me, and that hits you like a cold slap in the face, I can offer this hope:  just because I was grieving doesn't mean there weren't good days.  It doesn't mean that I wasn't able to cope or meet my obligations.  And it doesn't mean that, at some point, just like Ann Finkbeiner said would happen, I, without even realizing it at first, spent more and more time just feeling normal.  As I've said many times before, there is a new normal to contend with, but you gradually find that the loss isn't the first and only thing you think of in a day.  Your loved one is never far from your thoughts, but you can have a life after loss.  Really, you can.

And that is hope.  It's not punishment.  I missed that at first.

Wednesday, January 29, 2014

Saying It Out Loud

"...his name is Voldemort, so you might as well use it, he's going to try and kill you either way."

- Professor McGonagall
Harry Potter and the Deathly Hallows:  Part 2

Over time, I've mentioned the book on grieving that I started and never finished, but I never mention its title or author, so some of you have asked me privately about that.  The reason I did that, I think, is that it's a little like Voldemort:  if you didn't mention his name out loud, he would remain in the shadowy past.  Of course, that wasn't really the case, now was it?   But, I was horrified by the things I was reading and couldn't believe that this would be/could be my life:  the wreckage of the rest of the family dynamic that the author chronicled over and over again, the years of dark despair before people felt like life began to return to them.  I didn't have time for that!  I had a mother whom I had to care for.  I still had a daughter who was alive.  I had eight - count 'em - eight dogs and a herd of deer who relied on me.  And then there was a marriage to think about.  I just couldn't accept what the author spelled out in those pages.

As it turns out, she was right.  About everything.  The book, After the Death of a Child:  Living with Loss Through the Years by Ann K. Finkbeiner wasn't really trying to leave its readers devoid of hope, I don't think.  Rather, the intent was just to lay out the road hazards so we would know what we would be facing and perhaps avoid the pot holes.  But I didn't see it that way.  I don't know what I needed or wanted at that moment.  Some sort of magic wand, I guess, that would make it all better.  There isn't one, as it turns out, so all that is left is the ability to know and prepare for what lies ahead.  So, I should have thanked her book for that honesty, not feared it, I guess.  And, I can tell you now, as that relates to marriage, it's actually amazing to me that any marriages survive, as opposed to my original shock and dismay at her proclamation that 75% of them will not (I've subsequently read up to 80% in other sources).

Candidly, I don't know fully where my marriage stands in that category.  We're still married, we're still a committed couple, but we've spent significant periods of time away from one another.  Would we have done that, even been willing to do that, if Kelsey had recovered?  Who knows?  Maybe we would have exhausted ourselves so significantly to pull her through that we would have ended up looking at one another and decided that we just couldn't be together anymore.  But, I think it's probably more likely we'd have settled down to looking forward to grandchildren and checking off our bucket lists.  As it stands, I think we're fighting a battle still to see how our marriage will end up.  Things are still unsettled, in part because there have been subsequent traumas that have continued to strain at the bonds we've fought hard to maintain, granted.  Still, there were so many falter points along the way that I have to confess that I accept those dire statistics now.

I indeed get how most marriages just can't withstand the strain, now having lived through these last few years.  As I've said over and over, grief is a personal thing.  And you work through it at a different pace and in different ways than anyone else, spouse included.  And you need different tools.  Some may blame God while others turn to Him.  Some will throw themselves into causes, others will become introverts.  So, while I'm no expert, here is what I would suggest if you really want your marriage to survive:

  • You have to talk to one another and accept the other one's point of view.  If your partner tells you they need to go to church everyday, and you can't stand the thought of it, then don't stand in their way.  Conversely, tell them honestly that you can't stand the thought of it, and don't go with them just because you think you're supposed to.  You'll end up resenting your partner.
  • Don't shut one another out.  You're both hurting, and no one will understand it more than the person sleeping next to you.  So use that as a strength, not a burden.
  • My honest advice is don't do this alone - defining alone as just the two of you.  Get some counseling.  Your exploring unknown territory:  use a guide.
  • Don't blame one another.  Easy to do - we do it all the time to our spouses:  take out our frustrations and fears out on the person closest to us, assuming always that they'll forgive us.  It's not a good thing in the best of times, it's poison now.  Your spouse will be wrestling with enough self blame.  They don't need yours too.
  • Be patient with one another.  Above all else.  Give it some time to sort itself out.  
And, finally, it's never about the love you have for one another.  Remember that.  Don't sacrifice that love to the fire of grief if you don't have to.

Thursday, January 23, 2014

More Lessons Along the Road: A Little Help From Your Friends

What would you think if I sang out of tune
Would you stand up and walk out on me?
Lend me your ears and I'll sing you a song
And I'll try not to sing out of key

Oh, I get by with a little help from my friends

Another thing you need to know...

Your Relationships Will Change

The bad news is, when you finally get to a point where you can shake off the fog of disbelief and shock long enough to take stock, you'll find that some of the people who were a large part of your life aren't there anymore.  Some will have walked away from you.  Some you will have walked away from.  In other cases, it'll be more like a drift, but no matter how fast or slow, or how it happened exactly, there will be a shift in many of your relationships.

The good news is you will likely find that some others - maybe sometimes long lost friends returned - will have stepped in to fill the void, and you'll have new and beautiful friendships.

And the better news still is, you'll find some people stuck by you through it all.  And then you'll truly know you, despite your horrible loss, are blessed with some great gifts.  For those people are worth more than all the gold and diamonds on the planet.

But, the bottom line is, even for those people who remain by your side through thick and thin, your relationships will likely be different.  And the best thing to do, in my opinion, is to know that and accept that.  How can they not be, after all?  You're different (more on that later).  Your life is inalterably different.  You wake up and look out the window in the morning and perceive it differently.  But different does not necessarily mean bad.  In some cases, some of the friendships I have are so much better because of this experience.  The love and the bond we feel is deeper.  That doesn't, of course, mean I would trade that for my daughter, but when you're looking for rays of sunshine in a shit hole of a situation, there are some to be found.

The counsel I would give anyone who might ask is to forgive those who walked away.  And accept that you had to do the same in some cases and don't hate yourself for it.  I've been on both sides of the friendship coin.  I've had people drift away from me because I was too caught up in things that, given their particular pain at the time, seemed petty and stupid, and they just didn't need that in their life.  And, I look back on that now with some shame.  In one case in particular, I would love nothing more than to make amends, but I can't because that person died some years back of AIDS.  The last time I saw him, I was all full of rage over some wrong I thought someone had done me and griping about it.  He didn't need that.  What he must have thought!  But, it took me until I had my own horror show when Kelsey and then Marissa got sick to see that and realize it.  So, I had some similar experiences after Kelsey died.  I had friends who were so caught up in their own stuff that they wanted to talk to me about, and I just couldn't do it.  I couldn't care.  I couldn't help them.  I couldn't even find patience for it.  But, it's where they were in their life.  They couldn't understand and see fully what I was going through because they are so fully invested in their own issues.  That's not a damning statement.  It's just one of fact.  They're human.  But I now fully accept that my long gone friend couldn't be around me at the end.  I hope some of the people I don't talk to much any more know that it's much the same for me.  They were wrestling with their own demons; I couldn't support them or even understand them at the time.  I had to walk away.

Others would, with only the best of intentions, say or do the most horrific things.  Sometimes I separated myself from people I not only was friends with but actually truly loved because of that.  I hoped they did not take that personally, but I know some of them did.  I know they didn't mean things the way I took them in many cases.  But, I had to protect myself.  And I would say the same to all of you.  Losing anyone, but maybe in particular child, is like having your brain being hit by a semi at 80 miles an hour while it's out riding a bike.  You're psyche is badly injured.  On life support really.  To survive, you have to take care of yourself.  And sometimes that meant, for me, cutting some long and deeply held ties.  There are a few ties that I chopped away at until we were both bloody, and wish I had handled it a little differently and more graciously, but I had to do it.  I would expect that you will as well.  The trick is to do it better than I did.  Looking back on it, I think I would have tried harder to tell the individual honestly and openly that I have to take a sabbatical and make them understand it's not about them.  Tired as that line might be, it's true.  It's really about self-care.  And at that moment, self-care is critical.

As for the ones who walk away after your loss, they have their reasons and you need to, even if you can't understand it, know that is the case.  When that happens to you, let them go, try to understand them and then forgive them.  I've also been one of those people.  The ones who are just so freaked out by what's happening with you and to you that they don't know how to handle it and they shrink away.  It took a lot to stand by me.  I was so volatile.  I'm still no Sea of Tranquility.  You can say that's to be expected.  And you'd be right.  But knowing that and living through it are two completely different things.  I once had a friend who was in fragile health tell me she knows and accepts that not all her friends will be there for her in all situations, but it doesn't stop her from trying to be supportive of them when she can be.  She believes that the friends who can be there for her when she needs it will be.  And for those friends she helped at some other time who are not able to provide a quid pro quo right then and there, well they will take the altruism she showed them and pay it forward to someone else at another time in their life.  Naive?  Maybe.  But I think she's right in many cases.  And, more importantly, what I can say now is that level of acceptance kept her from losing herself deeper in her own pain.  Personally, at the time she said that to me, I didn't have the emotional bandwidth to help anybody through anything worse than a paper cut.  I hope one thing I've gained down through the years is the maturity and experience to help others through hard times.  I hope I'm one of those people that have paid it forward.  At least some times.

Now, this is just all about your friends, your co-workers, your extended family.  I haven't begun to look at the immediate family.  That's a whole other post.  And I can tell you, I'll tackle it as best I can, but even after all this time, I don't know that we've got it all figured out.  Read for yourself next week and you can be the judge...

In the meantime, thank you to all my friends who still loved me and love me when I'm not that lovable.  I love you back.

Friday, January 17, 2014

Lessons along the Road

Waiting for the end to come
Wishing I had the strength to stand
This is not what I had planned
It’s out of my control
Flying at the speed of light
Thoughts were spinning in my head
So many things were left unsaid
It’s hard to let you go

(Oh) I know what it takes to move on
(Oh) I know how it feels to lie
(Oh) All I want to do
Is trade this life for something new
Holing on to what I haven’t got

Sitting in an empty room
Trying to forget the past
This was never meant to last
I wish is wasn’t so.

- Waiting for the End
Linkin Park

I am leaning more and more toward a fresh blog.  I've floated a name idea out on Facebook, and it's gotten some approval, but not a ton of traction, so I'm a little worried that the people who think it's stupid just don't want to say, but, more likely, most people have other things to worry about.  It's probably not the best way to do market testing, but like I've said before, I'm a lazy researcher.  A friend did give me a great alternative idea, though, so now I'm torn because I like both mine and hers a lot.  But, the real point I've come to after some really intense soul searching is I want to give myself permission to be more light hearted.  I mean, I hope I'm not a total downer in these posts, but overall I have spent years now wrestling with some serious topics and I'd like to let that go, at least a bit.  I think that's a big step for me.  I suppose I could continue on here and just switch topics.  I've done it before.  But, it doesn't seem right somehow.  Like it would betray the subject matter I focused on here.  Therefore, I continue to lean toward letting this one float out there in the cloud for anyone who might happen across it and find some succor in my words and creating something new for myself to explore the new world I find myself living in.  But the reason that's not just a no-brainer is because as soon as I move on to that new topic, I do, to my own mind, say I'm ready to move on with my life.  And that's harder than you think it would be.

I thought I would spend the last few - potentially - posts here walking through what I think the biggest themes of grief recovery are from my perspective.  And, I'm finding as I consider my options about the blog, that this is a huge one:

Self-forgiveness is hard.

And maybe the hardest of the lessons there is.  At least it is for me.  And it's the one that keeps cropping up to bite me in the ass.  Because, no matter what the circumstances, we're wired to want to protect our children.  Our mandate is to nurture them and raise them and let them outlive us.  When an offspring, even an adult one, dies before us, it's against nature.  It is not what was what intended, so we must have failed somehow.  Even someone like me who believes strongly in Fate and things happening for a reason struggles to reconcile the obscenity of that kind of loss against moving past it.  And it's natural to think, "If only I had..."  What?  If only you had noticed symptoms earlier?  If only you had grounded your child that night so they weren't out on the road?  There are a million "if only's" for a million different scenarios, and I bet there are a million or more parents right now who have that litany running through their heads.  I get it.  I really, really get it.  What I don't have is an easy answer.  I struggle with this still.  A lot.

I was reading a post recently from a mom who was clearly just exhausted after years of battling her daughter's disease and was wanting to throw in the towel at the moment.  Oh, how I uttered those same words so many times.  I wanted to shake her by the shoulders though and tell her not to say such things because she may someday live to regret them.  I didn't.  I didn't say anything.  Because I also know she didn't mean it.  She just needed a safe place to vent.  And then she'll take a deep breath and continue the battle.  But if they lose the war in the end, she'll harken back to those words one day and hate herself for them.  So all I can say is that it serves no purpose at that point.  You don't bring your loved one back.  All you do is short change the family and loved ones you still have in your life.  That is so much easier to say than to do.  And doing it takes a lot of time and self-patience, and still there are some days when the self-loathing just creeps in and takes over.  At this point, I may have to concede that it'll never go away.  I have a lot of "if only's" that dance through my head in those quiet moments when all there is me, my thoughts and my memories.  When they creep up on me, really all I can do is ride it out.

I don't think it's any stretch to say that the individuals who go on to start organizations in their children's names do it out of that struggle to find forgiveness for themselves.  If we can do something - anything - to prevent the same thing from happening to another parent's son or daughter, then we can find some redemption.  I threw my efforts into this blog, for example.

We make mistakes as parents.  Unfortunately we are not magically endowed with super powers once we have given birth.  And sometimes our most earnest efforts will not be enough and bad things will happen.  That is the simple fact of the matter.  So, if I had to say something to parents who are struggling to cope with children who are in the grips of an eating disorder, it would be understand what the stakes are:  this disease is a killer.  But also understand what your limits are and allow yourself some self-care as you wrestle with it, because it's a long, hard fight.  You will say and do some wrong things along the way.  You just will.  Learn from them and move on.  If you, God forbid, lose your child at the end, then all I can say is please know this disease is a horrible monster and sometimes is stronger than all of us together.  It's not your fault.  It's this awful, horrible beast.  Not you.  Your new battle will be to now accept what I am saying as true and that will be a long, hard fight.