Tuesday, February 18, 2014

The Worst Club Ever: Grief, and What Not to Say

I will always remember the spring of 2011 as the time when I began to grieve my mother's death.

Roller coaster doesn't even begin to describe the bizarre twists and turns of devastation and hope.  The story, as it is now, is happy.  She is alive and healthy-ish and I am astoundingly grateful.  But it involuntarily dropped me into this strange group that we like to call, The Worst Club Ever.

'We' is myself and my dear friend, Katia.  We met working together two and a half years ago, and discovered that we were both in the club of People Whose Parents Have Cancer. Katia is smart, passionate, honest, funny and kind.  I feel the better for having her as a friend.  And Katia's dear Dad died in November after a hard-fought battle with pancreatic cancer.

She's treading into new territory now that I can't understand.  But we bonded over grief and sarcasm, so I think our friendship will survive.  I originally asked her to sit down with me to come up with a 'What Not to Say" list to people who are grieving.  But she has so many important things to say that I wanted to share more with you.  If you want to skim, I've bolded the "What NOT to Say" and the green text is "What TO Say".  But if you have a few minutes, please take the time to read it in full.  I feel so privileged that she shared her heart with me.

I should add that Katia does NOT have a side ponytail.  It's a regular ponytail.  I just can't draw it.

S: This is not formal, obviously
K: It's going to be on NPR!  Sound smart!
S: Tell me a little bit about your dad.
K: His name is David.  Was David.  He was a writer.  He could have done a number of different things, but he always wanted to be a writer and to create things.  He met my mom in 1976.  Their first date together was seeing a documentary on apartheid.
S: Romantic!
K: When I was a kid, I loved the sound of fingers on keyboards because my bedroom was next to his office, so I would fall asleep at night to the clacking of the keyboard.  My dad never learned how to type properly, just with his two index fingers.  I have fond memories of that, and him taking me to (tv) sets as a kid, so I could see the world that he lived in.  I was very affected by how magical it is and how hard everybody worked.  These people are beyond exhausted, but working well into the morning in the freezing rain to get the last shot.
S: That work ethic has followed you, hey?
K: Yeah, for sure.  When I started working at the fringe, he was really excited because he thought I was getting to really feel that intense, building up to one thing work was like - it's a very similar atmosphere.  It's crazy and it's fun.  I think the reason why I love that is a lot because of him.


K: When he was diagnosed, I was 21.  I was in my last year of university.  I had all these plans of going and travelling for a year, and going overseas - at the time, I wanted to work in international development.  And then, that changed.  He tried to be really positive about it, and that really sticks with me, that he said, "I'm going to fight this, and we've got each other, and we're going to be okay".  He didn't let on much, but I know he must have been so scared.

***Katia's dad fought pancreatic cancer for almost six years, beating the odds of 99% of people diagnosed with pancreatic cancer dying within 5 years.  He died in November 2013 in the family home.***

K: We had a lot of good moments, we went on vacations, we spent so much time together.  He really tried to squeeze things out of life, well, really, his whole life, but especially those last five years.  I think even though he didn't let on a lot, he knew that it was so limited, and he didn't want to have any regrets, and I think we knew, too.  He fought and he fought and he fought, but things got worse and worse.  In 2013 I was driving straight from work to the hospital, then home to sleep, then work, hospital, sleep.  It just went on and on.  Finally his oncologist said, "There's nothing we can do for you any more. You have about three months to live."
        That was a really hard thing to believe, because I think human beings want to be hopeful and want to...stay away from the ugly truth that everyone dies.  You cling on to hope that there's still a chance.  I think what gets me, is that my whole life, I've always believed that if I tried hard enough at anything, I can do it.  And it made me realize no matter how hard you try, you can fight for your life for almost six years, and the end result will still be the same. And it was a big blow.
        People like to say things like, "At least you had time to prepare", but those people don't know what they're talking about, because in all those years of me preparing - I can't tell you how many times I pictured how it would happen, or imagined what sitting through his funeral would be like, it was a daily thought, because that was the reality - but that moment where I looked at him and knew that he was dead was like nothing I could have ever imagined.  The level of panic and fear was just intense.
S: You say you felt unprepared.  I think this could probably be confusing to people, since he was sick for so long, and you had a chance to say goodbye.
K: Yeah, I did.  It's like...it's like you say... I think I'm going to go deaf one day.  So to prepare, you say, "I'll walk around plugging my ears, and I'll know exactly what it's like to be deaf".  You can tell yourself that it's preparing, but yours is temporary.  The permanence is so different. And nothing you can imagine, no matter how hard you try beforehand, can prepare you for the finality.


S: Do you feel like there's an expectation on you to be over it faster?  Because he was sick for so long?
K: Definitely.  I've had people say, "At least it wasn't a surprise", and I understand that when people say things like that, they're doing it because they genuinely want to make you feel better.  It's not that they're trying to be insensitive, but unfortunately, when you say that to someone who's grieving, the loss of someone they love, you say things like, "At least..." intellectually I understand, but emotionally, it sounds like they're saying it could have been worse.
S: They're trivializing.
K: And the fact is, no, it couldn't be worse.  It really couldn't.  It doesn't matter.  It really doesn't matter in a lot of ways how it happens, the result is still the same.  And yes, there are more horrible ways to lose someone you care about, but a lot of the emotions are still there, expected or not, there's still shock.  When people say, "At least you had time to say goodbye", I think deep-down their subconscious is trying to protect them from the scary truth that no matter how you die, it's going to be awful.  They're clinging to this idea that there's one way that's easier than the others, and if we have that way, it will be fine. It's still going to be terrible.
        I just wish people would stop trying to make you feel better.  Nothing you say is going to make the person feel better.  It's this weird, sort of narcissistic idea that "I could be the one to make it okay".  You're not going to be.  Just acknowledge it and be there. Trying to make someone feel better is just crazy.  "You don't have regrets, you did things together".  There are still things that I regret.  There are a lot of things I regret, and you're never not going to have regrets.  "At least you remembered him in the prime of his life."  No, I watched him die slowly over 6 years.  If you don't know what to say, say that.  "I don't even know what to say.  I'm so sorry, I can't imagine."  I just appreciate that.  It's not comforting, but that level of honesty - I have no idea what you're going through, and I acknowledge that.  People will compare their situations to yours a lot.  "Oh, yeah, I lost my 90-year-old grandmother last year".  I lost mine, too.  Trust me.  Not the same thing.  If you have a sick parent, or close friend, you do know what it's like.  But when you try to compare other situations - it's not the same.
S: People go to comfort-speak by trying to empathize and they say, "I understand how you feel!"  Instead of just acknowledging that you can't.  It's trivializing it because you're saying, "I get it, everyone gets it, it's really hard, a bad thing happened to you"


K: Some people say - "Wow, that really sucks".  That's a good response.  "Man, that's terrible".  Because it is.  Stop trying to make people feel better.  The way you make them feel better is say something.  Never be the person who doesn't say something, whether it's a card or e-mail or text message - if you see them, say something.  It's excruciatingly painful when you see someone, and you know they know, and they're talking about anything but.  And I think people do that because they don't want to upset you.  They don't want to bring up this super painful topic.  But trust me, they are thinking about it anyway!  It's not like they're in this space where they've forgotten...
S: "Oh, I completely forgot my dad died and now I'm upset!"
K: Yes - learn how to not back away from people when they're emotional.  People tend to back away from that a lot, like, "Eeew, emotions!"  Give specific things.  Don't just say, "If you need anything".  Everyone takes that to mean, "You are not going to do anything and it's an empty promise".  Offering tangible things, like, "I'm going to bring over food on this night", lets me know that I don't have to think about how to feed myself on this night.
S: What about semantics?  How about words like, 'passed away', or 'passed on' instead of 'died'
K: I hate them.  I don't get upset at people for using them because I think they're trying to be gentle, but I think that one of the reason we get so awkward about this is that we have all of these weird metaphors for the same thing.  You're walking on eggshells trying to not make other people uncomfortable, when really you're the one going through something that other people should be trying to help.  Being sensitive for other people is just silly. The real words help me accept it more quickly.
S: People say, "He's gone to a better place".  I know one of the reasons I don't say it is that you often don't know whether someone believes in heaven or an afterlife, but you had explained a little more about it.
K: Yeah, to me, the best place for my dad to be is with me, so it doesn't matter necessarily what I believe, it's not a consolation at all.  Why would it be better for him to be away from me?  Just in general, it's best not to allude to, "Things are better this way".  I've had a lot of people say, "At least he's not in pain" - that's come up a lot. And I know my dad, and he would have taken pain over death any day.  He would have said, I'd rather be in pain for the rest of my life than not living.  Let go of all these platitudes that are supposed to soften the blow and really understand that it sucks and it's gonna suck and knowing that and acknowledging that, I think it really helps and makes us more honest.
S: Do you feel like this has aged you?
K: Oh my god, yes.  I actually have to remind myself sometimes that I'm 27.  One of my friends asked me how I feel, and I said, "I feel old.  I feel so old.  I feel like I'm 90".  And that's also partly just dealing with disease and illness for several years, and going from being the youngest child to a caregiver when I was 21.  The early 20s are when you're supposed to go bananas in life, and I never went through that.  So it's been a lot of years of stressful stuff.


S: I really hate this question that I'm going to ask you.  And if you don't want to answer, don't.  Is there any sense - you talk about all this time of not doing things - is there any sense of relief?
K: ...No.  And I'll tell you why.  Because for me, the end of it is not the end of it because now my mom is alone.  Her life partner is gone and I love her to death and I have a responsibility to make sure she's not alone.  Although, yeah, there's things like I can probably have an easier time planning trips.
S: (sarcastic) Yaaaay!
K: There's a feeling for me, "Why don't you just travel the world, you always wanted to work overseas" -  but I'm not going to abandon my mom and leave her and not see her for a year.  I don't want to miss big holidays, which are going to be especially hard - our family was always big on celebrations.  That window of opportunity is more or less gone for me.  I've heard other people say that there was a feeling of relief for them, but for me, I don't feel that. Now I feel like all of this focus that was on my dad before is being shifted to my mom.  All the feelings of relief are clouded by the feeling of no matter how hard this is for me, it's harder for her.  It's her partner.
S: That's a lot of weight to carry around.  You won't go back to normal.
K: Yeah, the permanence of it.  People say, "It will get better".  Grief is not like a 5-step process the way psychology likes to categorize it, like, denial, then this, then that.  An article I read explains new research where they describe grief as an oscillating process.  It doesn't go away.  It gets better in that the grieving periods are fewer and further between, but I don't think it's something you ever get over, I don't think you go through grief to the other side.  A lot of people tell me that the memories eventually become happy instead of sad.  But the expectation from people is that you'll just be better.  After the first month or so, people stop calling and checking in on you, but you're still right in it.  I think that's really tough, because for me the last few weeks have been way harder, and my mom has expressed that, too, but everyone else moves on and expects you to be better.  It's weird how much of it you feel like you have to put on for other people.
S: There's another thing that has really stuck with me.  You said there's never enough time.  You said, it just feels like his life is like a book and he doesn't get to see the last chapter, and it feels so unfair.
K:  Yeah.  My dad loved his family, my mom, my brother and I.  He wrote some things that we didn't find until after, and one of them is this really beautiful essay on his childhood, and he talks about how when he met Mom, it was like nothing in his world existed before her.  And then when they had us, it was like nothing had existed before us. It was like, "This is life. Right here".  He loved us to death.  There's a lot of stuff that I find really hard to know, like things about me that he's never going to see, and big moments in my life that he won't get to know happened.  One of the hard things has been realizing how little I know about him. He had so many stories - there was so much about him that we never knew and we never bothered to find out, and now we never will know.  When he was sick, I didn't want to ask him things, because it felt like admitting that he was going to die.  I just couldn't bring myself to ask those questions because it felt too real and too obvious, my admitting that I needed to know this stuff because you're not going to be here much longer.  There's never enough time.  Even if we have 80 years on this earth, it's nothing, it's peanuts.
S: Is there anything else you want to say about who your dad was?
K: He embodied three things, which was that he really loved life, he had a lot of joy and laughter in him, and really loved the people around him.  I think those are things everyone should aspire to.  But I love him to death and I'm never going to stop missing him.


Edit: A friend passed on this link with a pdf sheet of "How to Help" that I think is wonderful.

6 comments:

  1. I suggest reversing the colors on your bolded words. Red means stop/no :)

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  2. Thanks to you both. - Gareth

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  3. This is perfect. I don't mind the euphemisms so much, but it has surprised me how little I want to be reassured by others...and how much I just need to hear sincere validation that this is HARD. So, thank you, thank you, for this.

    I'd also add, as a 'to-do' that even if you don't feel worthy of reaching out to someone to express sympathy (lost touch, rocky relationship, etc.) just do it anyway.

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    1. My friend, thank-you for this. Your words are so valuable. xoxo

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