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.

Thursday, January 9, 2014

Running the Course?

Every year Christmas overstays its welcome just a little bit at my house.  I like all the decorations I've collected over the years, some of which were in my house growing up, and it's nice to sit and read by the light of the Christmas tree, but each holiday there is a subtle mental shift when suddenly I just want my house back the way it was.  I want all my usual crap back.  So it was again this year.  I waited until the weekend after New Year's but then killed myself to make sure every possible shred of it was gone before the first playoff game started (it didn't work, I had to record the first game and play catch-up).  And, in much the same fit of organization every year I begin to wonder if it's time to hang up this blog.  Have I said everything I possibly could say to someone that is of use?  This year in particular I've been seriously considering it because it's been four years since I did my series on being a happy couch potato for the Olympics and then watched Sidney Crosby win gold a couple of weeks later.  Now, next month, he'll try for another medal, and it seems like I should take that as a hint that I've come full circle.  That coupled with my recent reader numbers, which probably couldn't be lower if I wrote the last few posts in Russian.  Or actually that might help a little since, at one point, I had a fairly decent Russian audience, which always bemused me.  What, I always wondered, did someone in Russia think of a spoiled middle class American whining about her supposed troubles?  I never did figure it out.

Anyway, maybe it's time to think about the next phase of my life.  I could start a new blog.  I've toyed with doing one about being a female sports fan in the Steel City.  It's not that women sports fans are all that unique here, but we do come at our fandom from a different perspective.  I think women want to look at a player's performance from an emotional perspective.  For example, is Todd Haley's perception as a total tool because he's in fact insecure having lost a head coaching job, or is he really a jerk who refuses to pay his dog walker (one rumor that was floating around early in the season - the validity of which I have no idea)?  Guys don't write about that stuff; they don't care.  They care about the stats, not the off the field reasons for the stats.  But I have some blind spots.  I don't like arena football, and that's actually a viable sport here.  And I don't really follow Pitt basketball, which is a big deal because there is no other basketball to follow after all (kind of like UT football in Austin).  But, anyway, I'm kicking that around.  I could probably stomach a game or two of the off-my-grid sports if I absolutely had to.

Or I could actually try penning fiction again.  Never too late, right? I would need to stop being a lazy researcher, but I could probably do that if I was writing about something I was passionate about.

Or I could just use the extra time to read other people's stuff.  What a novel idea (pun intended).

I don't know right at the moment.  What I do know is that whatever course I decide to try and take, I think it's time to put aside the pity party and move on with life like it is a journey worth taking, not a punishment to be endured.  I've spent the last few months in a unique state of self absorption.  I don't like it much, and as a result, I'm not very fond of myself either.  Maybe that's come across.  I'm not sure.  But, I don't know that's the reason for the dramatic drop off in readers.  I think there's simply just nothing fresh to say on the topic of living past a devastating loss.

There are some conclusions I have come to as I've traveled through the last few years.  I'll share those over the next few weeks as I ponder the future of both this blog and myself.  One thing I can tell you, whatever direction I end up taking, I never made a dime writing this blog, but what it gave me was priceless.  I always said if I helped even one other person, it would be worth it, and that was/is true, but I think even back then, I knew it was really for me that I wrote it.  And ultimately, if I decide it's run its course, then I'm saying I am well enough and strong enough to do without it.  That's a little scary.  Kind of like someone trying to recover from a disease as complex as ED; one of the hard parts is really committing to recovery.  In a way, grief is like that.  It's something to hang on to because it feels like you're hanging on to the person you lost that way.  But how can you face the future if you're always turned around looking at the past?