THANKFUL FRIDAY

Andrea Gibson, a master of spoken-word poetry who cultivated legions of admirers with intensely personal, often political works exploring gender, love and a personal four-year fight with terminal ovarian cancer, died on Monday in Longmont, Colo. Gibson, who used the pronouns they and them and did not use an honorific, was 49. - Clay Risen, New York Times Obituaries

I know that this is quite the lead in for a gratitude post, quoting an obituary, but Andrea Gibson has been on my mind all week. I do not lean into poetry. In every English class where we were forced to read a poem and then explain the meaning in the poem made me cringe. But I do love a good poetry slam and Andrea Gibson truly was a master of both written and spoken word. Their poems can split open the hardest of hearts and her voice will be greatly missed. The thing that has been most on my mind though is the graceful and most beautiful way they left this planet. In Love Letter from the Afterlife, a poem that Andrea wrote to their wife, they write “Why did no one tell us that to die is to be reincarnated in those we love while they are still alive?” I have been fixated on that line because it says everything that I have been saying for years about Chris’s own death. I was recently tagged in a ‘get-to-know me’ thing on Substack and one of the questions was asking for the last thing I’d read that made me feel seen. I had completely forgotten about this poem. Except I don’t know if ‘seen’ is the right description; maybe the right word to describe how this sentence makes me feel is ‘validated’. Their recognition of how they will never truly be gone is a lesson in death that I want for all of us to study.

The living are here to absorb the souls of our lost loves.

It has taken a lot of time and work to find gratitude in being a vessel for Chris’s soul and knowing that he will always lay claim to a large portion of my heart. It has taken a lot of time and work to release the guilt that comes with that. It has taken a lot of time and work to see this as a gift rather than a curse or a haunting. Because it truly is a gift. From what I have learned about my Chris before he became my Chris, he was not open to love, not even to the idea of it. He was closed off from it, bitter and cranky over the very concept of love. He was very much a Mr. Darcy. I was the one that changed all of that for him. Me. There is something very honorable to being chosen as the collector of the soul at the end. He chose me. But there are also others. Dad. J. I contain bits of them as well.

I’d like to take a moment to address the way Andrea Gibson chose to live while dying. They created a writing space titled “Things that Don’t Suck” where they shared poems and things they loved and beauty. By all means, dying from cancer is far from easy. It is messy and painful and fucking horrible. But They made a choice to live with all of that pain and mess while seeking out and sharing joy and beauty. This is a most beautiful lesson in the art of dying. I have heard so many times that death is hardest on the living. This is true, but I don’t think this saying truly encompasses the complexity of death. You are still alive while you are dying and the knowledge of your demise is an almost impossible thing to comprehend or to make sense of. When Chris and I were handed the pamphlet for hospice care, we were stunned. I sat blinking and looking at our doctor with my head tilted like a curious puppy and I wasn’t even the one dying. Nothing the doctor said made sense to me. Chris had all of that plus the knowledge that his life was over. There are so many choices to make in how one deals with such knowledge. In this world, where it is so easy to see the gross and negative all around, to choose to see the beauty and loveliness a challenge. Choosing to do this while dying is heroic.

But aren’t we all in the process of dying? Isn’t is all just a matter of when? What if we started the practice of seeking out the beauty now?

I have a list of things that do not suck from this week alone, a list of good things that I did or I saw. There were bicycle rides and scooter rides and skate night. There were sacred moments on my yoga mat and cuddles with the sweetest puppy dog. There were many things that did not suck this week and I’m grateful for this.

DEATH BECOMES ME

I watched all of the series Dying For Sex on Hulu. I ate it all up in the most glutinous manner and I sort of regret not savoring it more. The whole candidness around sex and women who want to try different kinds of sex, along with the discussion on actual death made this series so….charming? Delightful? I’m not sure how to sum up the feelings this invoked, particularly the final episode. The hospice nurse, played by Paula Pell, is the hospice nurse I wish we had had when Chris was dying. Her candor and enthusiasm about the miracle of death is infectious.

The biological process of death is a miracle.

And of course, watching stuff like this stirs up the sludge that tends to settle at the bottom of a really good fish sauce. I ended thinking about moments in Chris’s last week, the memories of which I keep shoved into a cluttered back corner. I hate thinking about or remembering anything related to the last two months of Chris’s life. Favorite shampoos and soaps from that time frame have been completely eradicated from my life so that their smells don’t trigger memories. Any time water starts to back up in the basement, my heart seizes not with the anxiety of home ownership, but with memories of Chris being in the hospital while we had sewage backup into the basement. My body tenses with the memories of scrambling to take care of all the things at the same time and how everything had literally turned to shit. These are the reasons I avoid those memories and would prefer to shove them in a dark corner.

I had a week where I was consistently on my mat every day. This doesn’t mean I’m back to any kind of a routine. I am not. It just means that in this particular week, I managed to do an exercise I love doing more than once. After one of those yoga sessions, as I was walking back to my cubicle from the gym, I started thinking about that day after we all celebrated Chris’s birthday and I had to drive our friend Todd to the airport. He hugged me goodbye and told me that I was doing so good. He told me that I had this and there was comfort in his words. At the time, I was the first of us, our group, to experience death in this way. Our experiences had all been slightly removed before this one. There would be no phone call from another one telling me the news. I suppose maybe that I had at least done a good job of making it look like I was doing a good job? 

I think I still do that, make it look easy or like I know what I’m doing. Not too long ago, one of my coworkers was presenting in lab meeting, talking about a project I’ve heard about a half a dozen times already. I straight up stopped paying attention at one point and was scrolling Insta on my phone when suddenly I heard “I don’t know. Cindy, you’ve done that technique before. What do you think?” I think I deserve an Oscar for what happened next. I shrugged and said “You know…sometimes it works and sometimes it doesn’t. It’s all voodoo really.” And everyone in the room chuckled and nodded their heads in agreement. I did pay attention after this, but was also pretty proud of the performance I had just given. I would never say I am a great pretender, but I just might be a great masker. 

In the breakdown of what happens when a person dies, one of the steps near the end is called ‘the rally’. During the rally, the person who is dying experiences a sudden burst of energy and engagement. The person is alert and talkative and aware. I had read about this in the little book of death left behind by a hospice nurse. Chris and I joked about how it was nothing like The Handbook for The Recently Deceased. We found the booklet to be dull and uninformative. Any change in Chris’s demeanor or language or sounds he was making, I would pause and ask “what stage is this?!?” I was looking for signs of the rally, but either I missed it or Chris skipped this part. Now that I think about it, it is very possible that the rally happened during his birthday when the house was filled with people who love us. At least I hope this is true. The TV series made the rally look really very nice. I hate to think that we missed it, that we were present only for the real crap parts of dying. 

I wish we had celebrated the very act of dying. Instead, every moan or gasp or ugh made me panic and pace our room while asking “what do I do?” over and over and over. There are so many times I should have never listened to Chris. My fault lies in listening to the men in my life and believing them word for word. I do it now with Michael. I did it always with Chris, believing every “no, really, it’s fine.” or “we don’t need hospice just yet.” I was so distracted with “the what do I dos?” that I didn’t allow time for just being present in the miracle of death. Maybe I could have never been present for it. I was too mentally close to the person dying. When we did finally have a hospice nurse come in, I left the house for twenty minutes and in that time, Chris died. The nurse said Chris had been waiting for me to leave. There was no way he was going to die in front of me because he knew it would also kill me. 

Chris was stupid. 

So was I for listening and believing every word. 

I’ve started watching the last season of Andor and I know I shouldn’t be watching it all, because it just makes me sad. Of all the movies and television I’ve watched since Chris died, this for some reason is the thing that makes me want him here more than ever. To sit in silence next to him on the couch while we watch the beginnings of a rebellion and then to dissect each scene, each line, in discussion would be… The audacity of anyone to add to Chris’s bible, his religion, with him not here to approve or disapprove, to be his own Council of Nicaea. This is all of the cliches. It is not fair. It is infuriating. It is impossible. It is unimaginable. Which that part is fine. I don’t need to imagine the loss, the grief, the heartache. I am fully present in all of that and how there is always a layer of it with me always. Even while I move forward and make my own way. 

I am fully present.

MIA

Michael and I were watching The Greatest Beer Run on Saturday evening and early in the movie, the main character gets word that his best friend has been reported MIA. Michael said “That has got to be the worst. I mean what you and your family have done if J was MIA?” He didn’t know. He didn’t realize what that question would and could do to me. But he asked it and the words were out and I sort of just collapsed in on myself. I mean, he realized his mistake immediately and started back peddling and apologizing. There are so many things that he just couldn’t know about any of it. He doesn’t know that I still, after all these years, have dreams where J is alive and I can assure you that this is a collective dream shared with my family. Sometimes in those dreams, J never left and sometimes he just shows up after being gone for a number of years.

None of them are reality.

If I could have expressed myself in words in that moment, I would have said that a MIA report would have turned hope into an albatross that wouldn’t just dangle around our necks, but dangle and twist to choke us. There would be no moving forward or backwards. My family would be stuck, trapped inside a ball of questions lined with unimaginable layers of hope. We would never be able to come to terms with all the meanings in the words missing in action and this would shatter and fragment us even more than we already are. There would be those of us who would give up hoping and would just wish for a finding of remains. There are those of us who would never stop believing that J was alive somewhere out there in the desert. And we would tear each other to pieces over our different beliefs and hopes.

A notice of missing in action would be worse than death.

That was the answer I eventually squeaked out around my tears.

I have received some horrific news that I cannot currently discuss (or will probably ever discuss here). Just know that the weeks ahead are going to be difficult for many and confusing and weird. It is particularly a week for being mindful of our words and the questions we ask. It is a week for softness and empathy. It is a week for comforting each other.

Speak softly with kind words.

SPEAKING ILL OF THE DEAD

I’ve noticed the back and forth happening in the social media world over the death of Rush Limbaugh. People are celebrating and other people are pointing fingers at the celebrators because they think it’s bad manners. If you’re going to celebrate a death, it should be Hitler’s, Bin Laden’s or any other awful human being who made the world around them worse. Wait…that was Rush Limbaugh. He built a career from spreading hate, bigotry and misinformation. He had a recurring segment on his radio show called “AIDS Update” where he ridiculed gay men who had died from AIDS. For those of you who are all “He spoke my language!”, all I have to say to you is that I don’t know if I’m embarrassed to know a person whose language is one of hate and bigotry or if I just feel sorry for you. The bottom line is that Rush Limbaugh chose to spend his time on this planet monetizing hate. He made the world around him worse. People are bound to celebrate having one less asshole on the planet.

But why shouldn’t we celebrate a death?

I can think of two times where I didn’t necessarily celebrate death, but I did welcome it. At our final diagnosis, the doctor told us that Chris maybe had six months left. I would give anything to have him still here with me, but I am so relieved that he left us well before that predicted six months. He was in so so so much pain. It was not an easy death. Liver cancer is no joke. While I mourn having to lose him, I celebrate the speed at which he was taken. The same could be said for my Dad. I feel like Dad had two deaths. First came the death of his mind, leaving his body to linger and suffer before finally letting go. When I got the call of Dad’s passing, all that came to mind was “finally”. I felt that death didn’t come fast enough for Dad and in a sense, I celebrated the arrival of it.

The exception is that with both Chris and Dad, there was a celebration for the relief from pain, but also a celebration of lives lived. It is easy to live the kind of life where people are happy to see you go and Rush Limbaugh latched on to that easy path. He had an audience. He had people who fed on his words of hate, who celebrated along with him as he mocked those AIDS victims. He had people who believed in the lies and hatefulness that came out of his mouth. While some of us celebrate his removal from the planet, we cannot forget Rush Limbaugh was awful because others wanted his awfulness. He had people who listened to him. To have such a platform and to use it the way he did was a waste. I would rather celebrate the life he could have lived.

It definitely makes me think about how and why I want people to celebrate my own death.

AWARENESS

6/52 Project Zen Cancer Awareness Day

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If I received money every time someone asked me why we don’t have a cure for cancer yet, I’d have enough money to run away to Italy. Or, at the very least, pay off some credit card debt. I usually just shake my head and answer with “I don’t know” because it is the easiest/laziest answer I can give to someone. I don’t think many people realize that the term ‘cancer’ is a very simplified word to describe a whole giant group of diseases. The thing that groups these diseases together is a common root cause: abnormal cell growth. That abnormal cell growth can be caused by genetics, viruses, chemicals, obesity, autoimmune disorders, hormones, and physical agents like asbestos or BPA. Any one of those things can set off a chain reaction in one cell that leads to a mutation in an oncogene that can have various results. A daughter cell inherits the messed up gene and then goes hay wire The mutated gene causes the cell signal other cells. The gene mutation can make that cell start dividing. A mutation any where in the oncogene can lead to multiple situations. Basically, it’s a molecular level choose your own adventure in cancer. Cancer is fucking complicated.

That’s why we don’t have a cure for cancer.

Yesterday, Josephine and I were finishing up watching CBS Sunday morning and we’d reached the part where they show this week’s calendar. That’s how I know that today is Cancer Awareness Day. When it was announced on TV I thought “great! I’ll just add that to the list of things I’m totally aware of this week.” Like for instance, how Chris would be forty eight on Wednesday. The day after Chris’s very last birthday, I spent the whole day crying. The. Entire. Day. I just cried and cried and cried and cried. By the time Chris actually did die, two days later, I was a complete shell of a human being. The nurse told me Chris had passed and I looked at the hospice care worker and said “what do I do now?” She thought I was asking about who comes and takes the body and all of that other stuff you have to take care of when someone dies. I kind of meant that, but I was really curious about what exactly I was going to do now, in general, for the rest of my life. These are the thoughts the I am very much aware of every year during this particular week in February.

The thing that I am usually least aware of during this week is what killed Chris. Abnormal cell growth formed a tumor on Chris’s liver right around the junction of where the left and right hepatic duct meet up. This meant that he was no longer able to excrete liver wastes and bile, which aids in digestion. Still to this day, I have a hard time admitting that cancer was the cause of Chris’s death. It just happened way too fast and without any warnings for me to be able to admit that. Also, at the end of the day, no one was really able to tell us what had caused his cancer. They found a small amount of cancer cells in esophagus and one specialist tried to link the tumor to those. They also talked about hepatitis B. If you read this article on Viruses and Human Cancer in the Yale Journal of Biology and Medicine, then the whole hep B theory makes the most sense. Don’t worry. I was vaccinated for hep B and C ages ago. Chris’s vaccination history was a bit sketchy. No one could say for sure what vaccines he’d had over the years.

Viruses are the cause of around fifteen percent of cancers. Epstein Barr, hepatitis B and C, human papilloma virus (HPV), human immunodeficiency virus (HIV). The hepatitis viruses and HPV are about the only ones with vaccines. They can all be prevented by using safe sex and safe needle practices. So maybe instead of focusing so much awareness on finding a cure for cancer, maybe we should be doing more to prevent the cancers we know how to prevent.

MODERN LOVE

Instagram post by Cindy Maddera * Nov 9, 2018 at 5:50pm UTC

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My music selection has been all over the place lately. I go from a Kesha station in the mornings to Morrissey in the afternoons. Some times I toss in some Pomplamoose or broadway show tunes. Last week, it was David Bowie. Hours and hours of everything Bowie. Modern Love started playing and for the first time I noticed that David Bowie speaks at the beginning of that song. His speaking voice caught me off guard. I was suddenly struck by the sound of it and immediately regretted not having a chance to have a intimate conversation with David Bowie.

David Bowie died from the same thing Chris died from. Cancer of the liver. I know what Mr. Bowie’s last few days looked like. I think of his wife who had to witness his last few days. I think of a few other women who have had to witness those last few days of their own spouses. I want to squeeze all of them tight and just whisper “I know. I get it.” The image of how they looked in the last few days are never going to leave your brain. It will float to the surface of your memories at random. Michael’s drunk face does it for me. I guess, at least I know what he’s going to look like in his final days. Also the smell of Jason’s Organic henna shampoo does it. It’s a shame because I really liked that shampoo.

The scientist in me finds it fascinating how the soul of a person sort fills the organic spaces like balloons. As the soul shrinks, the body doesn’t get smaller. It gets more hollow. Sunken. The body gets more and more unrecognizable as the person you knew. There are machines that photograph the entire insides of the human body, but there’s yet to be an image of what one could interpret as a soul. Everything has a name and (mostly) a function. The large intestine, small intestine. Heart. Liver. Kidneys. I would be tempted to say the appendix could be the organ that holds the thing that makes you, you. I’ve never known a person who has had that removed to know if they’re different afterwards, but considering that the removal of an appendix is pretty standard procedure would have me ruling out particular organ. I don’t have my tonsils and I’m pretty sure I still have my soul.

Pretty sure.

There’s something there that doctors haven’t seen that keeps us inflated and whole. Something more than air. It is the thing that makes you who you are. I know exactly the moment when Chris was no longer Chris. The same thing with Dad. There’s a part of me that wishes I didn’t witness those moments when the balloons filling up the their organic spaces, started popping. Those popping balloons didn’t even make a sound. No warning, yet I knew it was coming.

I know when to go out and when to stay in. Get things done.

Is that what’s holding our souls steady and in place? Knowing when to stay in so we can get things done?

It’s time to change the station.

HE'S DISEASED

Crayon

6 Likes, 1 Comments - Cindy Maddera (@elephant_soap) on Instagram: "Crayon"

I received a letter from a collection company recently claiming that Chris owed $89 to someone. I expect that this will still be happening to me in ten years, even twenty. People want their money even if it has to come from beyond the grave. I took the letter out and wrote 'he's deceased' at the bottom. Except then I looked at the word 'deceased' and my brain got confused. I said something like "I feel like I didn't spell that right. Instead of saying 'he's deceased', I feel like it may say he's diseased." So then, I picked up my pen and wrote 'he's dead' under 'he's deceased'. You know... just to clarify. I'm not sure where I'm going with this post. I really just wanted to jot down the above because I found it funny in a sad sarcastic kind of way. 

I've been thinking of a new angle on how to write my story. I thought about writing around my online dating experience. Each chapter could be a date, except maybe not because I didn't really go on that many dates. I do have the first sentence rolling around in my head. Actually it's been rolling around in there for awhile now. As per usual, I just lack the discipline to sit down and write it. In my head, the story plays in a sarcastically funny slap your forehead kind of way. Just imagine a sad widow, slapping a bright sunny smile on her face and trying to make herself interesting for a various slew of men who are either divorced, never married, or married and never divorcing. I really think there's something there. 

I've also been thinking about moving all of the furniture and cleaning under everything. One morning last week, I dropped my earring and it bounced under the bed where my fingers wouldn't reach. I had to use a ruler to fish it out and when I did, it came out with a bunch of dust and cat hair. I eyed the earring with one eye before thoroughly washing it and pouring alcohol all over it. We have mice. They're not getting into the pantry, but still...we have mice. The cat has been earning his keep (sort of) by catching them with the help of the dog. This is what usually happens: The cat is chasing a mouse. Josephine senses this from the bedroom and immediately wants out. I open the door and then the two of them start chasing the mouse. If Josephine catches the mouse, she takes it outside. If the cat catches the mouse, Josephine steals it and takes it outside. At four AM this morning, both of them lost the mouse behind the bookcase. The cat was so pissed off by this that he brought a bird into the house. That he left alive with working wings. 

Really, I am in the mood to clean out everything. Not just the house but myself and I don't mean that I need to drink more kale juice. I'm talking about sweeping out the the creases and crevices of my brain. I'm talking about pulling all of the thoughts and ideas out and setting them down on paper in one giant Chris styled list. I'm talking about making an actual outline for that story and cleaning out a corner of my bedroom for meditation. I've got the most serious case of Spring Fever and I keep thinking of that old saying 'feed a cold, starve a fever'. What do you starve yourself of when you have Spring Fever? Potatoes? Pizza? If you asked me today what I wanted to eat every day this week, my answer would be 'pizza'. I probably need to starve myself of the TV and couch lounging. 

That sounds as awful as taking antibiotics.  

I'VE STOPPED BREATHING

Shroom

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The thing I find interesting about Our Town is the message of how you'll miss all of this when you're gone. Colors are more vibrant and even the most mundane item can be breathtakingly beautiful. A coffee mug. The weight of that coffee mug cupped in both hands, absorbing the heat from the hot drink in the mug. So pay attention now, kids! You don't get this stuff when you're dead. The flip side to this coin is what you no longer have when others are dead. Our Town is not about the living as much as it is about the dead. I wonder if Chris is standing just on the other side of some invisible wall, thinking the same thing. Are we both missing the things that are now gone? What's it like on his side of that wall?

Sometimes on dark days, I imagine the people I've lost wrapping their arms around my insides. In a Tim Burton inspired fashion, I see the ghost arms encircle my ribs and guts, my heart and I watch my internal organs turn gray and hard. Don't we all see our lives as a movie, our very own personal Truman Show? We all want to be a movie, a soundtrack, a star, even if it's that smallest most distant star. It's not so bad watching my insides turn gray and hard. I see it as invitation. "Hey, why not come hang out with us?" the dead say. And it's tempting. I'd love to veg out on the couch, watching dumb action movies all day with J or sitting in the driver seat of some expensive Cadillac as Dad drives us across several state lines to exchange it for a different fancy Cadillac. I'd love to spend the day doing anything with Chris. 

I've been forgetting to breathe. I'll be sitting at my desk and all of a sudden I will gasp for air as if I've been playing that game of how long you can hold your breath under water. I'm holding my breath. Every time it happens, I wonder about how long it's been since I last inhaled and exhaled. I know that part of this is all because I've spent the last month riding in cars and planes and hunched over microscopes or a lab bench. My chest has been closed off like a clam, but even clams need to open up and stretch sometimes. I used to do backbends all the time, opening up my chest, opening up my heart. Then my back broke and my heart felt squishy and vulnerable, so I stopped. Now the arms of the dead have wrapped themselves around my ribcage and my heart and I gasp for air like that goldfish I had as a kid who would jump out of the tank all the time. You'd walk into the room and he'd be laying in a damp puddle on the shag carpet, only his mouth moving as he struggled to breath air without water. That fish lived for ages despite all his suicide attempts. 

Today in savasana, I laid with a foam roller between my shoulder blades, my heart and lungs splayed open for all to see. I stayed there for ten minutes while I screamed inside my brain the whole time. It was torture. I could image the dead clutching to hold tight even while their fingers were being pried free. Before I knew it the ding of the timer was jolting me back to the here and now and the people I've lost no longer wrapped their arms around my heart and lungs. I am partly relieved and partly disappointed.