@kwrkey and @juliejulie

My Boyfriend Died

How to be brave, and why I cry about Vine at work

This is the story of how Ken Richter, my boyfriend, my life partner, died four weeks ago today, after a quick but fierce battle with Esophageal Cancer.

I went back to work two weeks ago, and now I find myself crying, and arguing about the value of Vine more often than I normally do.

@kwrkey and I shared our journey openly on social media, and got through the toughest times by living our lives in plain view, embracing vulnerability, and letting the good wishes of thousands of social media strangers wash over us. We invited them into our living rooms, daily, through our phones.

The events of Wednesday, October 29th, 2014, the day Ken died, are etched deeply into the part of my brain that wants to hold onto him. He did not want to die. He fought bravely for six months.

I was alone with him at his house when his eyes rolled back in his head and he flopped all the way back into his grandmother’s rocking chair and he stopped breathing. I was not ready for him to die that second. I told him to come back to me, which we had both agreed I would do if he ever seemed to be slipping away, and there was a chance he could come back.

I got on the phone with hospice for the short time he stopped breathing. Maybe it was a minute, maybe two, I don’t know. Long enough for me to hang up with her and dial 911. The operator talked me through where I was, what was happening. I was scared and crying, but still level headed. I vaguely recall thinking do they record all this? Will he die while I’m on the phone and somehow his mom and his kids will hear all this later? I tried to calm down so I could listen, so she could understand me, so she could help me.

“Ken, Ken, Ken! Breathe! You need to breathe! Come back to me, Ken!” I was direct with him, but there were tears in my voice. I grabbed his hands. They were floppy. I realized he was unconscious. I’m afraid he might be dying, I said to the operator. I touched his face. I kept calling his name.

And then he came back to me. Like he said he would. He started breathing again, but it was sporadic and labored. You came back! I said. Yay! The operator stayed on the phone with me. She told me to tell her every time he took a breath. It was a gasp every time, but it was regular, I said. About one every six seconds.

The paramedics are coming, she said. Please tell them not to use sirens, I said. His boys are home with their grandma down the street. I don’t want them to come over right now. I don’t want them to see him like this. I don’t want him to die right now. I was crying. His mother texted me right then, said she had a gift to give me. Could she come over? I ignored the text. I listened to the operator.

An ambulance took us to the hospital, and he was on oxygen, awake and alert when I finally had to tell him, after hours of tests and CAT scans, trouble shooting, and phone calls up to his doctors in Portland (where his oncologist had told him three days before that he was healthy enough for a clinical trial), that there was nothing else they could do for him. His lungs were full of cancer now. There was no more room for air.

I had to watch him absorb that information, while he couldn’t talk. He looked at me in disbelief. Frustration. Anger. Helplessness. Complete grief. He didn’t want to die. I had promised him I’d try everything. And I did. That moment he realized it was over, that there was no more hope, was the hardest moment of my life. I’m sorry, I said. I’m so sorry sweetie. So, so sorry. And I held his hand and cried.

Everyone left for a bit, and I had to kiss his head and tell him I didn’t want to let them break him open to buy him 15 more minutes of life with agonizing pain.

I told him I knew he had quiet bravery and so did I, and that we’d get through this together. I’d be there the whole time, and we’d take away the pain and I would hold his hand and sing to him and I wouldn’t leave until he was really truly gone and even then I’d stay for hours, I’d be the last one to leave, just in case he was floating around the room and could see me, I’d still be there. It was horrible to tell him he was really going to die soon. It was so hard to do, but also easy because there was no other choice but to tell him. He was aware. He took it. I couldn’t fall apart and make him be brave all alone.

I will not leave you, I said. I put my forehead on his forehead and hummed the sweet little love songs we sang to each other.

The doctors gave him morphine to ease his pain, and he started slipping away. I told him I loved him. He squeezed my hand.

Ken finally let go, while I was running my fingers through his hair, and his brother was standing right next to him, after his ex-wife, who was holding his hand, said “Thank you for talking me into having kids. I’m so glad I have them. Don’t worry about the boys, I will take care of them, Ken.”

Two seconds later, his heart monitor flashed “Full Brady” in red. And he was gone. And then I cried. A lot.

I stayed in the room with him while his father came, and then his mother, and his sisters. His best friend arrived, and waited more hours with me, while we talked to doctors and nurses and called friends and relatives. I found a warm spot under his left arm that stayed warm the whole time, and kept my hand there, until finally it was after midnight, and time for the funeral home to come and take his body. It seemed like it was time to go.

And then I Program Managed his post-death, as if it were my job, because it was then, and it got me through the first two weeks of emptiness without him.

There was so much to do. Crying with his family. Hugging all our children. Going to the mortuary, sorting through procedures for cremation and death certificates. Who picks the urn? Talking to the coroner about the autopsy report, taking the phone calls with the organ donor explicit-question-askers, who determined that indeed, Ken did not have HIV or Hepatitis, and therefore, some lucky person could receive the gift of his eyes.

And then there were condolence calls with his oncologist, his hospice nurse, his surgeons, and emails with the nurses on the 7th floor of Providence Hospital in Portland who took such good care of him for so long.

I then needed to announce his death on Facebook. And Vine. And Twitter. And Instagram. His friends on Pheed announced it to each other, many of them followed him elsewhere. I had to field hundreds of comments and private messages. And write his obituary, to submit to six different newspapers because he was well-loved in the many towns where he’d built community over the years.

I needed to help plan his memorial service, write a eulogy, sort through hundreds of pictures and files and songs on his computers, his phone, and his social media feeds to find the right images, the right songs, the right words to represent who he was. I archived his memories for his children, his family, his friends, for me. I updated his blog. I cleaned my stuff out of his house, and went back home to my house, 30 miles away.

Social media didn’t cure @kwrkey’s cancer, but it did give us many gifts that opened our hearts and changed our lives forever. It gave us real friends, who shared sickness and health, life and death with us. It gave us a digital archive of shared memories that will last almost forever. And it is helping my heart mend, little bits at a time.

400 people attended Ken’s memorial service, including many Facebook and Vine friends we’d never met in person, who flew in from around the country (and Canada!) and another 200 from all over the world who watched the Live Stream online.

And 90 of our friends made Vines to illustrate Ken’s “Day Together” song he wrote for me, and extended to all our friends, about sharing morning coffee and flowers together. Our friend @jimmysustar, who we met on Vine, edited most of those vines all together into a two and half minute video we showed at Ken’s memorial service.

And then, two weeks later, I went back to work, at my actual job. Because even grief doesn’t stop bills from being due, and lives from moving on, no matter how much I wished Ken could still be here, with me, holding my hand, telling me jokes, making little videos, singing me songs, hugging me almost forever.

Work has been my respite these past six months, a way to step out of the chemo room, and away from the 7th floor oncology ward chatter about chest tubes and collapsed lungs, metastasizing tumors, pain control, AB testing 15 kinds of anti-nausea medicines and intense meetings with palliative care and hospice doctors, protocols for clinical trials, and end of life meetings with social workers and chaplains.

Work let me put my earbuds in, hop on a conference call, and talk about monetization strategy for bloggers, the latest research on education, how to hold a hackathon for new API portals and fun new product ideas. Work let me forget about cancer for an hour or two at a time.

I work with a brilliant group of R&D engineers at Hewlett Packard who personify the “HP Way” of kindness, compassion, and professionalism all wrapped up together into real friends. There is great comfort in working for people who have spent most of their careers managing people. They know how to do it well. And they don’t mind too much when I cry at work.

My boss gave me a hug my first day back, when I walked over to his desk. “How are you?” he asked, and I immediately burst into tears. “I was fine until I saw you,” I said. He knew what I meant. Kindness makes me cry.

So the fact that I was near tears the other day while discussing the role of Twitter in our go to market strategy with my Program Manager, on the voice-raised edge of arguing, while trying to convince him why we should include a collaborative Vine and Instagram element in a product roadmap, shouldn’t have seemed odd. But it was.

Crying about my boyfriend dying while I’m at work is expected and understood. But why was I almost crying about Twitter and Vine and Instagram strategy?

I felt the tears sting in the corners of my eyes and my voice crack. It was awkward. We slipped into “good communication” protocol and got through the meeting.

My PM stopped by my desk afterwards to check on me and try to figure out what had upset me so much.

You say you understand that I want Twitter, Vine and Instagram integrated into this strategy from the beginning, I told him, but then you tell me why we can’t do it all right now. So sometimes I feel like you dismiss this social media stuff, because you don’t really understand it the way I do. You don’t understand why it’s so important. You don’t live in those worlds the way I do.

I know you’re tired of me telling you that influential people will connect with me, I said, and help me when I ask, but I’m not being salesy, this isn’t about my ego, it’s just how it works for me. I’ve gotten to know them and helped them with their stuff over many years. They will answer our emails. They will take our phone calls. They can help us push things through.

And, I continued, I know it might seem far-fetched that people will play games with a brand and make themed content with their tribes, but millions of people are…and they’re having fun doing it. It makes them feel good about the brand, and the product. And their community. And themselves. It’s how they are expressing their creativity.

And, I thought (but didn’t say out loud, because I didn’t want to start crying again) it might seem weird that hundreds of people I’ve never met are sending me condolences via Twitter, Facebook, email, Instagram and Vine, and have spent hours making memorial vines and YouTube videos, and sending handmade gifts and flowers and cards to us over the past six months. Why would a bunch of people we met on a phone app send stuff to my house from across the world?

But the thing is, they did. They are. Because these strangers on social media that we shared our lives with became real friends. And joined in our story that unfolded online. They flew out to be with me at Ken’s funeral, and we cooked together, and sang and danced with our kids, and we laughed and cried together.

And then I had to stop thinking about all that, because I was getting teary again. No need to cry again. Been there, done that.

Oh, and also? I said. I read an article last night that said HP just did a $20M social media ad spend on social media with influencers across Twitter, Vine, Instagram and YouTube.

Okay, my PM said. Tell me your idea again and this time I’ll listen with all this stuff in mind.

And so I did. And he told me to write it up so we could talk to more people about it and see if we could push it through. And I felt better. Because even if we can’t make it happen this time, it’s nice to feel heard, even if I do cry about social media at work.

Oh, and send me that article, he said.

So I did. And the next day he emailed back “LOL, okay, okay, I get it.”

It’s nice to know that thousands of people around the world who met @kwrkey on social media loved and appreciated Ken Richter for who he was. He truly was a bright light in a weary world. I miss him every day, and I always will.

Here is one of my favorite songs, which he recorded last year, that sums up our two and a half years together: “Time is pushing me down an old road,” he sings, “open your heart, and be free.”

“Open Your Heart” by Ken Richter

Thank you, everyone who is a friend and fan of Ken’s, online, an in real life. I appreciate your love and kindness so much. I’m glad we have his “historical documents” and social media memories to share.

Here is a six second message from Ken, a year ago, to all of us:

Here is the collaborative music video a bunch of our Vine friends made to Ken’s “Let’s Spend the Day Together” song:

Here is Ken’s website: http://www.kwrkey.com/

And his YouTube channel: https://www.youtube.com/user/kwrkey/videos

And a compilation video of all his vines, in chronological order: