Issues and Tissues

I remember falling to my knees in the hospital and sobbing into your hand, “I don’t want you to die. I’m not ready for you to die.”

I had made fun of people earlier who had taken your Stage IV diagnosis for a death sentence and were already planning your legacy. But once they had all cleared out and it was just me and you and the darkness of the November sky, I collapsed like a marionette whose strings had been cut.

I remember walking a lot with you. I remember walking near the ocean, near mountains, in forests, in grocery stores, down the aisle.

I remember the feeling of your hand in mine. Big hands, rough hands, strong hands.

I want to forget…nothing.

You taught me not to regret my choices. That they all led me to the place I am now and that place, despite your absence, is beautiful. And fun. And funny. Ronan is trying to restring a play bow so Lighting McQueen can have a hang glider.

That’s funny.

So, because you showed me how all your choices make you who you are, and that I should not be ashamed of who I am, I don’t want to forget anything.

I hate that I’m already forgetting things.

If you have to be here–and you do because there is no taking this back–may you live and love as if this hadn’t happened to you.

May your heart be full of care for others and for yourself.

May your heart be filled with the care from others and from yourself.

May you live a life that your loved one would be proud of–but also, that they would miss. Live a life so full and glorious that your loved one makes every effort from the Other World to come join you. They will be Eurydice and you will be Orpheus. Your music will be your beautiful life and they will try and trick the Gods to come home to you. They will fail, because this is not a state that can be reversed. And you will continue with your tempting music.

You will live, laugh, love. You will do things they will be embarrassed about and things they will roll their eyes over. You will make terrible choices and good choices and you will miss them the whole time. And they will continue to pound at the underside of the Earth in an attempt to get back to you.

They will not. They are spectral, you are corporeal.

Live a life that will prompt them to remember that because they are spectral, they can be with you always. That though they cannot hold you, and kiss you, and drive a car with you, they can be next to you, over you, under you, maybe even through you if they can figure that one out.

Live a life that will make them want to explore their Old Magic and create New Magic so they may continue to be close to you.

So on a spring day, as the sun is bright and blinding overhead, you feel a gentle breeze, smell the green of the new blossoms, and hear the wind in the wind chimes and know they are with you.

May you live a life worthy of your loved one. So their death may not be in vain. Live a life as if death has touched you, so you know the true meaning of life.

During cancer care, I was and still am connected to a secret network of Facebook groups specifically for supporting people through Colorectal cancer. A lot of the ideas we got for treatments outside of the normal chemo approach was because of these groups. Specifically, the group for Stage IV caregivers. Because cancer is such a deeply personal disease, there are a million ways to treat it. And even in that million there might not be something that helps.

So I got up close looks at people with liver complications, bone complications, open wounds, different kinds of ostomies from what Andy had, procedures I didn’t even know existed and specialists that I didn’t know could have a specialty.

One thing that always fascinated me was suction wound care. Our one experience with it was while in Hawaii on vacation, Andy started vomiting. After two days it didn’t go away, so we went to the nearest hospital. That one didn’t have CT machine, so we went to the bigger hospital. But even that one wasn’t big enough and so Andy was airlifted at 3am to Honolulu to go to the hospital there. I took a commercial flight a few hours later, the first leg of what was supposed to be our journey home, and found him with a bag attached to him

Andy had had two abscesses next to his liver. The doctors drained one quickly and efficiently, but the other was a little more stubborn. So they put a drain in, specifically a suction drain. It had negative pressure on it so it would be constantly drawing out anything that formed in that little pocket where the abscess had been. Very little trickled out, the doctor knew she had gotten most of it, so she wasn’t surprised when the bag remained mostly empty for the rest of the week we were there.

I feel like my heart is permanently bruised. Or permanently tender. Over the wound of Andy’s death is left a pink, newly grown area, and over that is a bit of negative pressure wound care. It’s ensuring that nothing is touching it while my heart heals.

Surprisingly, Coronavirus is what made this happen.

I was going around in the world, the newly healing part getting bumped and bruised regularly. But now, I’m with my kiddo all day long, taking things and mostly the pace I want to be taking them. I don’t have enough interactions during my day to bump the wound again, so it feels like it’s…healing is too strong of a word. It’s existing without incident.

And that’s nice.

When we restart whatever version of the world we have when we are done with COVID, whatever that looks like, I don’t want to go back to the old ways. I want to continue to honor my heart that is existing without incident. I don’t want to get sucked back into the vortex of capitalism and the pressure to be productive and the pressure to parent a particular way; to exist in a particular way. I want to exist and live and–dare I say?–thrive in a way that let’s my heart exist without incident. Or with fewer incidents. Maybe someday I can remove the negative pressure drain keeping the bacteria out. Maybe my heart will never be more than a mostly tender lump of strong muscle. If that’s true, I think it’ll be ok.

When I was in graduate school, I learned I was very powerful.

People were scared of me and what I would do. They were afraid of the power I would wield and how I could choose to decimate entire civilizations. I learned that in order to keep people from making up stories about me and my power, that I had to be wildly transparent. I was in a cohort with people learning to be therapists and organizational change makers. You don’t get drawn to the work of healing unless you yourself are broken. So, I twisted my natural comfort to be a private person into being an open book.

Like all new powers, this one swung too far and while it made others comfortable, it had the affect of laying me bare more than I wanted to be. But, the gift in this newfound practice was that going into Andy’s cancer care, I was wildly transparent with what was happening.

I kept a CaringBridge journal with regular updates. They not only included the medical situation, but also our spirits and moods and what we needed for support. We had built around us a community of people who wanted to help and this was an easy way to stay transparent with them; to get the help we needed without having to be asked “How’s it going?” 200 times.

So, when Andy died, we all saw it coming. I wrote about it, prepped everyone for it, gave out tips on handling grief and supporting me and Ronan. From a community standpoint, our transition from cancer family to grieving family was seamless. Because I brought them all along for the terrible rollercoaster we were on.

That means that I have the gift of not being seen as “other.” I am other, but not in a scary, perilous sort of way. My otherness is not something to be feared, but rather a part of me. What makes me a good friend and family member is this otherness. Death is not a specter in my world, but something that I live with and manage every day like my toddler.

Because people see me managing it, they don’t avoid me. In fact, they lean into me. The transparency and authenticity is seen as refreshing in a world where you are asked to mask the scary parts. I mask nothing and as such, people come to me and match my authenticity. I know all of my friends’ insides and outsides. I know their fears and their dreams. I know what they want and what they love. I know that this happens because I don’t hide what I’m feeling or experiencing.

At first, the bareness was a harmful practice. I was with people who wanted to test how vulnerable I was. They were encouraged to weed out the soft parts so I would know where they were and could defend them or tend to them.

Now, my bareness is a gift I bring to everyone. It’s my wisdom and my love and my truth. It’s what people want and what I need to feel held.

In the midst of the pandemic, I have been talking to a lot of friends. When they are missing vital, essential pieces of self care like drinking water and going outside and sleeping enough, I remind them of their foundational humanness and how that needs to be tended. And sometimes they say, “You’re never wrong, so I should just listen to you.”

That’s the power of living wholly authentically and in the deepest integrity. People respect it, want to emulate it, it’s a power unto itself.

So, I’m not the witch in my fairy tale. Or I am, but not in the way we typically think. I bring a gift that while people don’t want it necessarily, they know it’s inevitable and watch my movements for their own edification. So when their time comes they know that my gingerbread house isn’t a trap to eat them, but actually full of treats and a warm fire and some tea. I am the quintessential hostess to my own grief and I am the quintessential hostess for others. I do this so I can get support, but also I do this because I have no other way of being. Those who don’t want my gifts and powers weeded themselves out a while ago.

Sometimes I worry that I’m not in enough pain.

I feel my loss for Andy every day, but it’s not the piercing, debilitating way that I thought it would be. I’ve had moments of debilitation, but they have only happened a handful of times over the 6 months since he’s been gone.

6 months. Holy hell.

Sometimes it feels like a lifetime. How has it only been 6 months?

I thought I would be more paralyzed, more apathetic, more aloof. I’m sure that having a 3 year old accounts for a solid 80% of the forward momentum I’ve experienced. He cannot fend for himself, so I get up every day and care for him. And I’m afraid of irreparably harming him, so I do the work to be there for him.

So, in a way, I feel the pain every day. Sometimes it’s an ache or a slice. Sometimes it’s a soft smile, a laugh out loud. I feel the pain directly and I feel it with love.

I am very lucky that Andy had a good death.

In light of all that’s happening with COVID, I’ve been taking in a lot of information about people have good and bad deaths; what distinguishes them. For so many right now, they are having bad deaths. They are isolated and alone without having had the experience to tie up loose ends, say the things they needed to say, finish their business. I often wonder about how many spirits will haunt us after this ordeal has subsided.

Andy and I talked about his death for the 1 year 10 months and 24 days we had from his cancer diagnosis. We passed information back and forth. I asked a lot of questions, he gave a lot of answers. He got his affairs in order, checking beneficiaries, writing down passwords, telling me about how and when to clean gutters and how and when to show up for our son in Andy’s absence.

When he started hospice, we talked about his funeral service. We got very clear about who would speak and what order things would go in, who would be our host for the evening (the same man who married us), how to support all our friends who have children during the memorial, and how to support the children themselves.

When Andy died, he was by no means ready. He wanted to live and have a life with me and his son. He wanted to watch Ronan play soccer, likely be the coach of the soccer team. He wanted to maybe have another baby, maybe travel to Australia with me, maybe get a dog. He wanted to get an RV and go on long road trips with me and Ronan. He wanted to see the next phase of Marvel movies and see how Star Wars concluded. He had a whole other life he wanted to live.

When Andy died, he wasn’t ready, but also, he was. He did his work, he processed his stuff, he said his goodbyes and took one last nap with his son, his big hand on Ronan’s tiny chest. He told me I was the best choice he ever made in his life.

Because of all of this, the pain flowed alongside the love for 1 year 10 months and 24 days. I worry that I’m not in enough pain, but I realize that because I did the work of feeling it and saying it out loud and sharing it with him, the pain isn’t quite so sharp. It’s not quite so debilitating. ’Tis a flesh wound as opposed to a mortal wound. I can tend to it with my good first aid (that Andy taught me) and continue to live my life.

As I type this now, tears flow gently, my son sits behind me quietly playing. Love and grief live side-by-side. Because, it turns out, they are one and the same.

When Andy was alive, I often had jobs where I would toggle wildly between being around people for like 14 hours a day, to days and weeks of total isolation. If our lives intersected in a way where he was in tech and then I was in tech, I could go 6 weeks with us only seeing each other for an hour a day. Maybe less.

There was one show he did a few years ago after I had our son where he put in 16 hour days for 3 solid months. It was so isolating. Being a new mom is already super isolating, but doing it with my husband unavailable for all that time was hard. I would make choices and observations about our son that I wanted Andy’s input on, but I would have to wait sometimes literal days to actually talk to him about it.

It was hard as an introvert to not get those days where I would be alone all day and could recharge. It was even stranger when I felt profoundly lonely despite having a tiny human with me all the time.

I worked very hard to get that tiny human to a place where he could be more adaptable and independent. I wanted to have some freedom from being attached to him all day. I watched other moms take this approach and they were fucking crazy. Like somehow they missed the part where their own mental health was suffering from being so involved with their kids. I knew with my hardy introvert-ness, I would need alone time, or as alone as I could get with a small child.

Fortunately, Ronan was happy to take some space from me and seemed to really want it. He would go to his grandparents’ houses with no problem and was excited to go to school. I was happy to not be doing things like bedsharing so I could have downtime every night.

But it’s so paradoxical how this has ended up. Because since Andy died, I have been aching to share a bed with my son. I sleep terribly when I do this, but the isolation at night is truly the hardest part. It’s where I feel the most vulnerable, where I feel his absence the deepest. Despite us working wildly different schedules, I could always count on that some point during the night Andy would crawl into bed next to me, likely holding my hand.

It’s very strange to not have that now. To go to bed in a bed alone, to wake up alone, to live a life of strange isolation, one that seems like it would appeal to an introvert, but in reality is miserable. Isolation to soothe introversion is only helpful if I know I’m not truly alone. Andy was the emotional safety net for that. The reminder that every night he would eventually come to my bed and lay his hand next to mine and, like, otters, we would fall asleep holding hands so we wouldn’t float apart.

He died holding my hand. To me it feels like the ultimate symbol that he felt he was safe as he moved into the Other World. I was there, laying beside him in the ultimate position of security. The daily reminder that we had each other because we always ended up asleep together.

Falling asleep now is hard. There’s no button to the ritual. There’s no punctuation that symbolizes the actual final moment where I’m choosing to go to sleep. The period on my day was Andy.

Now I live in a constant ellipses…all the moments blend together as I await the clarity Andy’s presence gave me to come back .

I recently said that even if my child gets to live the ideal, idyllic life for the rest of his life, nothing will overcome the loss of his Papa. There is no amount of payment the Universe can offer that would repay this debt.

When I met Andy, I thought my life of hard was coming to a close. I kept waiting for the other shoe to drop in this almost magical relationship. Really, we were quite sickening.

Until I met Andy, life was hard. Addiction and abuse and infidelity and parentification and narcissism and illness and instability and not knowing what a loving relationship was actually supposed to look like. I felt like I was constantly coming up for air only to be pushed under again.

Andy was like a scuba tank. No. He was a submarine. But not a little one, like a big one. Like a big wartime one, except his somehow wasn’t tight and confining, it had sprawling banquettes with plush pillows and a constant stream of tasty seafood. I could stay underwater for a long, long time while enclosed in my Andy submarine.

Then the submarine was torpedoed.

November 9, 2017 we were attacked from within. A mutiny by the crew.  Andy’s own cells were growing in uncontrollable ways and had invaded his guts. It was a rare kind of mutiny. The kind of mutiny that happens so quietly that less than 1% of submarine mutinies go down this way, but here we were. A veritable mutiny that had become a coup.

And we gave into the demands, the fatigue and the altered appetite and the strange sleep schedule. All while trying to keep the submarine going every day. Our newest crew member was only 17 months old and so we tried to keep things running smoothly while the coup got more and more intense and the submarine got more and more damaged.

Eventually, it sank. With you in it.

But in the course of the coup I learned that “Nothing overcomes me-/this must be life’s way.” I have never succumbed to the hard stuff before. And the coup, the cancer, showed me that. I have an ability to rise above. I had somehow grown gills and was making a home under the water, my little baby fish person beside me. I knew nothing would overcome me. Nothing would take me down.

Some moments I wish for that submarine again, for the safe haven of peace where you and I would trade off being captain and I could, fuck, just REST.

But nothing overcomes me. This is life’s way now. I will continue. And, surprisingly, I’ll do it better than I did with the submarine. I needed the submarine to grow my gills and my scales and strengthen my fins. But now they are ready. They will keep me moving. They will keep our son safe. We will make a new home in these depths.

I moved to a city that is called “The Emerald City.” While here, I met you and the color would forever be associate with you. Green trees, green grass, green fleece jacket I could bury my face in and breathe you in.

And your eyes.

Officially, called “hazel,” but often: green.

You wore the color often. You blended into the green and blue and gray of the pacific northwest like you were crafted for it and crafted from it. Because you were. Water and granite and lush rainforest made you. The rain making things green, making you blossom, bloom, grow.

The winter, when the rain is the hardest, we would hole up in our green living room and snuggle. We would breathe in the smell of the water on the earth and watch all the leaves turn colors and fall and everything would halt in this green and brown and gray palette.

And your eyes would shift from green to gray to blue to green. I would look into those eyes for solace and wisdom. For love and hope. For reason and order.

Your son has your eyes. Every day they get closer to the hazel that yours were. But his don’t reflect green as much. Our world right now is gray. You died just before winter and the rain didn’t feel enveloping or cozy. It felt, for the first time, oppressive.

Ronan’s eyes become more gray. I worry that his heart will be gray as a result of not having you. That he will be muted in his love or emotion or care because he doesn’t have you to hold him through all of those milestones that only you can know.

How do I help him? How do I keep him growing and green? Flexible and lush? Adaptable and willing and loving?

I think about you thousands of times during the day. Millions. Infinite. I think, what would Andy say? What would Andy want? How would Andy do this?

And I think of your eyes and the fleece and I look out the window to the Emerald City. It holds all the love of you. It holds the family we built together. And then I worry a little less about his lushness.