The Hardest Words I Ever Had to Say

How do I even start to cover my biggest topic — the one which has covered me for so long? The subject of dozens of blog posts already: the relationship my late husband and I shared with Death. Cancer was the horse it rode in on, but cancer was easy. You can fight fight fight! There is research! There are communities. It’s engrossing, engaging, and encouraging. I can’t tell you anything about that that you haven’t already heard.

What I can tell you is, the most important thing I ever told my husband. After, of course, I love you. 

Gavin spent his four last days in hospice. He had been living with a terminal diagnosis nearly two years; he’d survived two brutal surgeries, including one which failed, and five (I have to write them down to be sure) drug therapies: injections, infusions, pills, pills, and more pills. The last two were the two latest possible, delivered in his last six months, at the cutting edge of treatments and not even on the market yet. (We were familiar with the code names for all the investigational drugs in all the pipelines). And he was getting an increasing number of what are humanely called “opportunistic infections” but would be called demons in earlier days: shingles. Candida. Pneumonia. An unspecified bacterial infection. An unknown fungal infection.

To paraphrase D00ce, that all sucked, and we had a kid in diapers at the time.

We never went to bed angry, but we had a lot of really bad days. Every day we said “I love you.” That was easy and it was important.

But the third day in hospice they told me: You have to tell him he can leave if he needs to.

Did I tell him? I don’t remember. I regarded it as a duty to tell the quiet parade of his closest and oldest friends visiting: Before you go in there, I'm going to ask you to do me a favor: please tell him you’ll take care of me and my daughter. Please tell him he can leave if he needs to.

Those were the hardest words I ever had to say. I said them over and over. It was almost as if I was hearing it, too… the repetition helped. We’d entered hospice saying “this is to rebuild your strength.” I hoped he’d recover enough that they’d let me take him home and I’d have lots of help and he could die, surrounded by his adoring family, in a bed in our living room. You know, a month or three later. After his birthday party, after fair goodbyes, after making peace and in a state of blissful acceptance.

Instead he died two days later, in a bed in that same hospice, surrounded by his adoring family and a few friends and a miniature schnauzer-dachsund mix.

“The end” had been so far away for so long…. We danced with it. I asked a close girlfriend if it seemed, when she visited during a very, very bad period, that we were ignoring death, like an elephant in the room. She said, No, it was more like a kitten in the room, and every now and then one of you would lean over and pet it to pay some attention. You couldn’t ignore it, but you didn’t seem afraid, and it wasn’t that large.

But we had ignored it at times: we'd done everything. We’d shaken our fingers at death, looked it in the eye and screamed, we’d tested it, we’d tried to push it around. We’d made allies against death, and we’d bargained. Bargaining is pointless when you have no idea that May 31st will be the day you have to say, “it’s okay to leave if you want to.”

We never said goodbye. That was hard. Not that I felt it until later… there was no question he was “gone”… but it’s a romance that’s unavoidable, and it stung only as I hit everyone else’s expectations of what “the end” might be like, repeatedly, in the months and years following. But small stings, nothing like those we endured when we were losing our fight against cancer.

When you’re still fighting, you want to know the names of that bacteria and that fungus. When the doctors tell you it doesn’t matter, you begin to hear it: this is the end.

Don’t get me wrong… this is not about Elizabeth Kubler Ross and the Five Stages of Dying (not "of Grief"… but that’s another post).

But I wish we’d accepted that death wasn’t a kitten any more. I wish we’d let hospice in sooner. We thought we would… when it was “time.” We had talked about hospice, earlier in his illness. We loved the idea of a “good death.” But doesn’t everyone just want to live just so, so much more? But the closer that “time” got, the deafer we became to its knocking. Who could live with that sound? We turned the Baby Einstein videos up louder. We stopped asking Dr. Google about symptoms. We got mad at the oncologist.

Now that I have met hundreds of people widowed after long illnesses, I see that the elements of my story are ridiculously common. Pretty much every single one except the exact details, the dates, the drug names. But the deep ones: the hard ones, the emotional scars and fights and invisible enemies. The damage done, not by not knowing (because there’s nothing we can do about that except yell at God and doctors), but by not talking and not accepting the oncoming end.

Cancer may be a battle, but life is not. Life is to be lived and for love, and that is hard to really embrace during wartime. By the time he died, it wasn’t cancer any more. It was pneumonia and our unnamed bacterial and fungal enemies, and organs breaking down, one by one. At any rate, our oncologist had signed off long before: that’s a sign.

That’s what I hear when I hear about fighting cancer on the internet. That’s what I flash back to when I know a cancer blogger gets an opportunistic infection. That’s what it was like, and I can remember the detail and the complexity, the numbness and intensity intermingled, when one of my closest friends tells me that her close friend’s family won’t talk about what’s next when her lungs are filling up with fluid. Not quite triggers… memories of deep and dark times, and I feel huge lightness after finally sharing my side of my part of the story.

That’s how much is still in my brain and body and heart seven years after diagnosis, five years after his death. And oh, how I wish I could change it for every single person reading this.


"Sh*t people say to widows:" Please participate!

This is the old post with the instructions... skip it!

We are making a group video called ""Sh*t people say to widows" based on the "meme." If you're not familiar with them, here's a list (Watch out…some of them are pretty offensive and some of them have commercials). If you wish to watch only one, this one is very good ("Shit white girls say to black girls"):

This is a group project and we have to work FAST. Please read all the way through. I would love to have all submissions by next Tuesday, 1/24!

Between the thousands of widowed folks who read this blog, are in WidowedVillage.org and my FB pages, we will have TONS of insensitive comments that people say to widows and widowers. Want a taste of the material we've lived through? Read this, this or view this adorable and nasty video. There are also two threads on my FB timeline, each with more than 100 comments. We haz steam!

Want to participate?

You can contribute a quote or a video.

-- To contribute a quote, just fill out the custom form I created.

-- To contribute a video…… 
Email me your SUPER-SHORT videos. They should be less than 5 seconds each! If you want to do more than one, that's awesome, but make each video separately.

    •    JUST perform the quote… don't explain it, don't tell us background or who it was. JUST THE WORDS.
    •    Yes, you can film it on your phone.
    •    PLEASE film it in LANDSCAPE orientation (sideways). Try not to be so close that you can eat the camera, and I'd rather you weren't looking down at it (less flattering position anyway). If you think it might be too dark or there's too much background noise... do a test film first.
    •    You do NOT have to use HD video and if you have the option, turn OFF HD video.
    •    You can use any background including your regular old house BUT make sure there are no identifying details like family photos or street signs or anything.
    •    As for attitude: You want to be imitating someone. Pretend you are the clueless or rude person.
    •    You can wear a wig or schmatte on your head, or a costume, if you like, but that's not important. Doing this FAST is important!
If one of you would take a bunch of short videos of yourself eating a bag of chips while looking away from the camera, in different settings, that would be very, very awesome too. Somehow that flavor is part of the series. I nominate Robin Craig and a bag of Beanitos!
When you send your clip to me, tell me in the email if you wish us to use your name in the credits… or a pseudonym, or nothing. Make sure you use the email -- if you post it to YouTube I can't use it!

Email me if you have any questions. Comments are great, but please use the form or an email if you have a question about the project that needs to be resolved quickly -- I will get those sooner!

Deadline extended due to your awesome response!!
Don't forget -- Send your 5-second (or shorter) video clips to me by Tuesday 1/24!!!! Thursday 1/26!

Thank you and yaHOO!!!


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