Existence on the Brink of Living: Imperfectly Complete

 

♡

Grief is an ocean and it is heavy. The water dances around my ankles, the waves swell in front of me. I ask myself why I turn my back to the surf as I sink deeper into the sea. I ask myself why I squeeze my eyes shut as the water rises. My own questions echo in my head, desperately seething for an answer, yet the only reply I receive is the sound of the crashing waves. The same sound I thought you could hear if you held a seashell up to your ear when I was a kid. I used to play pretend, running along the shore from the rising tide. I used to think that I could escape. The sea swallows me whole. I know now that this is the end. 

The water whispers in my ear, she tells me the only way to go is through. She speaks softly, she says I must carry this heaviness from now on, she reminds me grief is part of healing. The salt stings my eyes. Denial is primitive, but it is a beginning, nonetheless. The more I explore the weight in my chest, I learn that this heaviness called grief is dynamic. The winds can shift direction at any moment, stirring the sea.

Tonight I float on the glassy surface, the pink sky envelops me, the buttercream frosting clouds touch me with their angel tears. Tonight, I accept the oceans outstretched hands. The tide is my heartbeat as the sky darkens, water flowing free as it surges into each and every corner of my mind. Tomorrow, there will be a change in the winds. 

The ocean's cresting peaks cycling through their groups of three, as powerful as the shrieking silence that I must take in return for my one worded question. why? The waves drag me into the undertow, pushing me down into the depths that lie beneath the water's rage. I hold my breath as the waves roll over me. Anger sets me free. Peace finds me in the most unexpected places. My capacity for carrying all this ache is vaster than some give me credit for. I can take it, because that choice has been decided for me. I can take it, for I have no other option. I have learned now what they mean when they say that life isn't fair.  

I must gaze upon the others and their careless dreaming from below the surface, wavering like a mirage. I have been reduced to silent spectator while the others dangle everything I wish I never took for granted directly in my line of sight. I think about it all the time, everything they take as certainty, everything I thought I was promised. I am shrinking into a shell of myself, I am deeply afraid. Will my empathy be all that remains of me, as my world and I become smaller and smaller?

Someday, I will break the surface tension, I will gasp for air until it burns my throat. I will embrace the sun and the moon again, and I will cry until my laughter leaps and twirls through the hallways. The tears that will fall from my eyes will swirl in the seawater until they are inseparably complete as one. Are my teardrops still mine, or are they now belonging to the ocean? 

Three years later and I know the ocean and I are infinitely intertwined. I know that we are two manifestations of one greater whole. The state of the ocean is change, and I'm changing too. The universe and all her stars taught me that every emotion is sacred. I found peace in my anger, I found freedom on the seabed. I found acceptance amidst the bubbles bursting on the water's surface. The sea foam is soft like the ocean's whispers. The crashing force of the ocean taught me resilience like no other. Her driving impact taught me to bend in the currents like the swaying kelp, reaching towards the sun and her sparkling rays of light filtering through the weight of the sea. Fluidity makes a difference of survival.

Grief is an ocean, it runs deep through my veins. Perspective is a powerful teacher. There is beauty in grief, there is sweetness hidden within turbulence. Grief is an ocean, and I'm going to feel it all the way through. Grief is an ocean, and so am I. 

♡

Ways I'm Processing my Grief Surrounding the Loss of my Healthy Body

1. Writing

Some days I will write poetry (such as the poem above!!), other days all I can do is a simple diary entry. It doesn't matter how much or how little I write, all that matters is that I am writing. I've been journaling for three and a half years. It is a habit you must build. Each time you write, it gets a little easier. 

Writing about my experiences makes me feel less powerless about what happened. I can mourn my healthy life and I can celebrate my new life at the same time. And you don't have to share with anyone, if you don't want to. 

2. Leaning into Childlike Whimsy

I have circled back around to all the things I loved as a little girl. Fairies, princesses, being super girly, and playing dress up. I feel at home when I embrace the things I used to adore. It brings me a lot of joy and comfort to engage in "childish" interests. I honestly need every droplet of joy I can get as of late. Surrounding myself with this warmth is crucial. I want to remind everyone that you can cope with your illness however you want (as long as it doesn't harm yourself or others) even if some people think it's weird. When I have an important appointment I usually bring one of my favorite plushes along! I've had my plushes by my side for all of my admissions, they've really been through it with me. I also recently bought fairy wings (which came with the tutu I'm wearing) and a new princess crown that won't give me a migraine from a local toy store, it made me so happy to experience so much joy over such silly things. My partner and I will also have tea parties when I am feeling up to it, and of course all my plushes are invited as well!

3. A New Perspective on Music 

I had been so numb to all the emotions involved with grief in the context of developing a chronic illness, that music was just a distraction for me. Lately, I've realized that music can be so much more than that. I used to avoid sad songs (after being a huge fan of Mitski and Elliot Smith in high school, when I was really struggling with depression). because I didn't want to acknowledge the weight of all the bottled up emotions I carry. It sounds very silly but I was so afraid of feeling sad, and I didn't even completely know that about myself during that time. I've had a particularly tough month with my health. Something changed at a recent therapy session. My therapist said she wants to ensure that I'm expressing more emotions related to grief. Music has been helping me process those more uncomfortable emotions. I picked out some songs from my new playlist that I feel represent my experience, whether its just the sound of the song or the lyrics themselves. I have come to know that art can have many different meanings depending on the interpreter. It feels like a sigh of relief to allow myself to feel sad, listening to sad music feels freeing after restricting myself from it for so long.  

Songs that are Helping Me Cope:

♡ World Princess ~ Grimes

♡ RIP Chrysalis ~ Eartheater

♡ Heartbeats ~ Grimes

♡ For you I hold my breath ~ Lalleshwari (Katie Jane Garside) 

♡ Know the Way ~ Grimes
♡ Swan ~ Ioanna Gika

♡ Oblivion ~ Grimes

♡ Faith Consuming Hope ~ Eartheater

♡ My Sister Says the Saddest Things ~ Grimes

♡ Pin ~ Grimes

4. Connecting with Nature Within my Ability

Being in nature is so healing. Unfortunately, I can't hike or even walk very far. A lot of the time my partner and I stay in the car and observe the scenery beyond the windows. I am still grateful that I can enjoy nature even when my health is doing so poorly right now. I would be lying if I said I didn't wish I could do more. From now on, I'll be honoring my feelings surrounding my illness. I'll let them take up more space. Instead of shoving them down and pretending like everything is okay when it's in fact the opposite, I will sit with these heavier emotions, even if it's uncomfortable. I will no longer be afraid of my own feelings. 

5.  Crying is Taking a Step Back to Smell the Roses

This sounds kind of silly and obvious, but at least for me, it is so essential to release my emotions. Being chronically ill is an emotional rollercoaster. It is vital to slow down and take a moment to acknowledge how difficult it has been. Otherwise, I fear I would be stuck in a cycle of denial surrounding the whole situation. I am never ashamed to cry. I don't think anyone should be. Crying is human. 

6. Making Mistakes is Part of the Process

It's important to acknowledge a few things here. First of all, healing is often imperfect, and that's completely okay. It is key to avoid constant negative self talk, which is something I've been working on for the past few years. You are going to make mistakes along this journey. Maybe that's the point after all. Secondly, it is beneficial to keep in mind that grief is not linear. You may feel angry one hour, sorrowful the next, and then feel like you've come to terms with it all a few hours after that. Sometimes, I will experience multiple stages of grief at the same time. This journey is complicated, overwhelming, and confusing at times. Grief is dialectical, meaning more than one thing can be true at once. It is a powerful thing once you no longer fear the emotions you need to feel to get through. I like to remind myself that you can't control what happens to you, but you can control how you react and respond to the situation.

7. Letting Go of Constant Judgement 

I am practicing judging less. Currently, my focus is to work on judging my mind and my body less. I am trying to stop labelling sensations I feel, such as pain and nausea, as good or bad. They are neutral messages from the body. My body isn't the enemy, and it doesn't benefit me to be at war with it and my illness. The same is true for my mind. I'm letting go of trying to fit everything into categories of "good" and "bad." Nothing is absolute. 

8. Suffering is Grace

There are so many unexpected things that being a burden teaches you. It broadens my humility. It forces you to acknowledge all the love and light that remains. It establishes a sense of profound gratitude for everything big and small. It fosters empathy, from empathy grows love. Being chronically ill makes you decide what really matters. It pushes you to explore deeply within, Everything I used to identify with is gone. But I know who I am and what I stand for. I want to love as much as I can in this life. Most of everyone will be heavily reliant on others. At some point in the majority of people's lives, they will experience being a burden. It is human nature to rely on others. On your loved ones,  on your community, on medical staff. I wish to deconstruct the negative connotation with the word burden. You can learn and grow by asking for help. You can learn things that aren't taught in school. Being a burden as a chronically ill person has taught me more about life than I ever learned in school. I wish it didn't have to be this way, I wish I didn't have to suffer. As Ram Dass says, suffering is grace. 

I feel like the Ram Dass short film "Going Home" ties into this topic really well. Shoutout to Scout for showing this short film to me! It is incredible and I would highly recommend. 

♡

Grief is a part of healing, a part of moving forward. Healing is painful yet beautiful at the same time. The same could be said about grief, as it is heavily intertwined with healing, with change. Change is another thing I'm learning not to fear. I'm accepting change, change like the tides, like the moon, like the trembling leaves that cover the branches of the aspen trees outside my window. Change is part of life, we are all united under transience. 

XOXO Lumie ♡