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 ♡

Meanings Unravelled: What Does My Art Symbolize For Me?

Why make art?

My most simple response is because making art is human nature. I believe everyone should create art, in one form or another. I make art for many reasons. I can say things I cannot put into words through my pieces. I love the way art can take on a new form depending on who is there to witness it. What it means to you may not necessarily be what it means to me, and I think that's beautiful. I would like to share specifically what some of my favorite art works mean to me, providing insight into my thought processes behind the scenes. 

"Growing and Blooming Along the Way"

This piece represents a moment amidst transformation. It is a visual representation of allowing yourself kindness during times of adversity. The spiraling lines symbolize growth that isn't linear.  I resonate a lot with this painting as someone has chronic pain. I am never pain free, yet I will bloom regardless, perhaps even because of this pain. The pain has taught me the things that truly matter, love, connection, and gratitude for all the little and big things. Clarity surrounding my values has given me new life. I live intentionally now. 

"Princess Self Portrait" 

This painting was inspired by a picture of me that my partner took. As someone who is in recovery from Anorexia, I have a very difficult time with being at war with myself, specifically my appearance. Painting a self portrait can be intimidating, but I've fallen in love with the process, as I can add details that come from within that can't usually be seen in just a photo. It eases some of the tension between my mind and body to know that I am more than my physical shell. The more you differentiate yourself from your outwards appearance, acknowledging that it is merely a vessel, and the least interesting thing about you, the freer you become. The painting represents where I am currently at with this process. I am not there yet, but I am becoming more free each day. I am sitting with the discomfort and it is turning into something beautiful. 

"Within"

When you love someone or something greatly, it becomes a part of you. You start to be reminded of that love constantly, it dwells within. This piece surrounds my love for pufferfish, my special interest. Through pufferfish, I began to love myself for the first time in a very long while. I started to allow myself to experience profound joy related to puffers. I decided a year ago that I would no longer hide this joy, even if it was deemed socially unacceptable. I will no longer hide who I am. I will feel the feelings that are layered deep inside of me. I will not be ashamed. 

"Currents of Love"

This multimedia piece is about creating an environment filled with love. It is symbolic to me due to how much I love sea creatures. This is a representation of my "happy place." It reminds me that in order to love others to the fullest, I must remember to be loving and kind towards myself first. I can do that by surrounding myself with people that support me and lift me up rather than tear me down, work on my tendency to tear myself down with judgment and negative self talk, and take care of myself physically by allowing myself to get proper nutrition and fluid intake. I have decorated my room in a way that inspired me. I will continue taking steps towards loving more. 

"Two Lilies"

This oil pastel and watercolor work symbolizes learning, growth, and befriending all the pieces that exist inside of you. Even past you, and your mistakes, even the things you fear were your fault. You can make friends with them too. There are other ways to live than in the past. You don't have to hate yourself after all. Lately, I've been working on forgiving myself, particularly the past versions of me. I have grown so much since those mistakes were made. I had to go through it to get to the point I am at now. I hold immense gratitude for the versions of me that fought so hard to stay alive. I am here now because of her. 

"Birth of Puffer"

Pufferfish are one of my favorite creations of the universe. I found myself when I found pufferfish, as I explained earlier. This is a visual representation of what it felt like to no longer hide or downplay my joy surrounding pufferfish. It felt like magic. It felt so free. I was finally me again, I hadn't felt so myself in years. It was experiencing the world through new eyes. Coming out of a deep depression, I found something that made life worth living. It was rebirth. 

Thank you for reading to the end! I appreciate you! 

XOXO, Lumie

Sprinkles of Joy Atop a Catastrophe Cupcake

 

As you may know, I have been open with my struggles regarding my chronic illness currently. Things have not been great for me as of late, though my quality of life has improved very slightly after my recent admission. I am grateful for any amount of improvement I can get. I refuse to be made invisible by my illness. I want to celebrate and illuminate all the joyful moments, I wish to see and live through their eyes rather than let the heavy moments swallow me whole. This is not to discard these heavier emotions or seal them away, as I have come to know that they have their place too. I simply want to uplift and recognize slivers of happiness, and thank them for keeping me afloat. 

I am so beyond grateful to have such a beautiful and unique space to rest and sleep in. I often experience an increase in pain and other distressing symptoms at night. My galaxy light projector gives me something to watch as I am laying down, looking at the ceiling. This helps me focus on something other than the pain. It also gives a dynamic element to the space, as the colors swirl and shift overhead. I also have a heating pad to help manage pain, and several pufferfish plush friends to provide emotional support. (My pea puffers have usually gone to bed by this time). 

Yesterday I was able to finish this self portrait I'd sketched out a few weeks ago. I am so happy I had enough energy to create this piece, as often the pain and fatigue make it near impossible to do anything other than rest in bed. I am very satisfied with the way this painting turned out, I am really happy I went through with my decision to add the swirling details in glitter gel pen. I have a feeling that little me would absolutely adore this piece as well. It always feels good to do things for your inner child. Getting dressed up in pink and trying on princess hats (I recently learned the correct term is a hennin) will always be a joyful occasion no matter my age. 

It was warm enough a few days ago to wear my gorgeous new dress without a coat! It made me feel like a fairy princess from a storybook. Walt and I went to the park and I made him take pictures of me and then we went and got tea. I'm so glad we were able to take advantage of a lower symptom day! 

My favorite perfumes are so comforting to me. I've always been the kind of person that's very tuned in with their sense of smell (to be honest I'm just autistic) and I'm quite particular with scents. Wearing perfume helps me feel more like me when I'm not able to dress up in himekaji. I've been wearing Glossier You for years now. I bought the Ouai perfume because I really like the smell of their hair products. It smells like a rose garden in the best way possible! I get so many compliments on the way I smell when I'm wearing these two perfumes together. 

The latest addition to my pufferfish plush collection, Chamomile! She is my largest plush and is perfect for hugging when I need a good cry. She is so adorable! She is also fairly anatomically correct for a pufferfish (no dorsal fin, fins on top and bottom of tail) which is difficult to find. Many companies don't do their research on what a pufferfish actually looks like before designing and manufacturing plushes. I am also just a nerd when it comes to these kinds of things, I will admit. 

If you made it this far, I appreciate your time! Thank you for sharing these joyful things with me. There is so much more in my life that brings me immense happiness that I didn't touch on, such as my incredible partner. I just wanted to highlight a few little things as of late. I am so grateful that I have the opportunity to be seen at Mayo Clinic in a few days. I will keep you guys updated on how that goes. And one last thing, I am so so thankful for all of you! My little internet community is so lovely, thank you all for being wonderful and for your support. I love you guys! 

XOXO, Lumie