All I Want

Sometimes I feel like a ghost screaming at the real world, longing to be heard.

All I want is for one person to turn around and see me,

to acknowledge my effort in just being,

And say “I hear you. I see you. You are real to me.”

Sometimes I feel like a hamster on a wheel,

running faster and faster but getting nowhere.

The world says “keep going, look how strong you are!”

All I want is to be told “it’s ok to rest.”

Sometimes I feel like I’m still sitting at the kid’s table.

The men look down at me with their patronizing gaze

and pat me on the head when I speak up.

All I want is to be told “you belong here with us.”

Rebirth

I’ve spent almost the last 3 years mourning my old self, lamenting the past. I think a lot of people do this, whether or not they’ve faced cancer or another life-altering trauma. I believe it’s a form of anxious attachment to perceived comfort and stability; we feel safe in the known, even if the known isn’t safe or serving us.

Add to that, it’s so easy to look back with rose-colored glasses, to pretend everything was perfect “then”. Looking forward requires vulnerability. It’s scary to become someone new, to face uncertainty, to change. It’s scary to trust that we will not only survive, but thrive.

So many times we get stuck in the trap of ruminating on all the things we can’t change. We embrace mediocrity and suffering because it’s more comfortable than flinging ourselves out into the unknown and hoping we somehow grew wings while we were waiting for the right moment.

But here’s the secret I learned when I finally let go and leapt: the wings were always there. They just never had room to help me fly when I kept them close to my body, afraid to use them.

Superhero Status Achieved

Since my diagnosis first with Charcot-Marie-Tooth (a genetic degenerative neuromuscular disease) and then with tongue cancer (also a genetic thing), I’ve often joked that I’m like one of the X-Men.

If you’re unfamiliar with Marvel’s X-Men, they can best be described as humans with genetic changes that give them a variety of super powers. They’re referred to as mutants. Mystique can shape-shift, Magneto can control ferromagnetic material with his mind, and Storm can conjure up weather events out of nowhere. There are many other mutants but you get the idea. Each of their powers helps them through life challenges.

My first cosplay in 2016. Unsurprisingly, a mutant.

Today I was making the same old joke about having the mutations without the powers, when I realized I do have super powers! I can’t read minds or shoot adamantium claws out of my hands, this is true. But I can adapt and survive and thrive.

I, like the phoenix of lore, have the ability to burst into flames and fall to ashes on the ground, only to rise again better and stronger than before. My superpowers are adaptation and growth. My superpowers are empathy and compassion for myself and others despite the trials I’ve faced.

My super power is being me.

A More Realistic Fairy Tale

The story starts with our beloved heroine, exhausted from slaying demons, sobbing on the floor.

She is alone in her cold, gray tower. Alone except for the demons she grows so weary of fighting.

She has realized there is no knight coming to save her. No army. No one.

And the demons keep marching steadily forward, relentless in the pain they inflict.

She lays down her sword.

This princess is too weak to save herself anymore.

525,600

I finally watched Rent last night after stumbling across Tick, Tick, Boom the night before. It was an eye, mind, and heart-opening experience.

We have only so much time on this earth. Each of those 525,600 minutes per year could be our last. Each is an opportunity to change, to choose love over fear, to cast off the heavy chains of what others expect and become who we truly are…to live la vie boheme.

We all struggle. We all have our vices and our skeletons in the closet, haunting us. But thats the beauty of it! We ALL have those things. We have ALL suffered at some point, regardless of race, religion, sexual/romantic preference, social status, etc. We are all human.

My heart has been so very heavy the last 2 years with all the division and fighting and hatred. I keep waiting for it to get better, for love to finally win. I keep hoping one day I’ll wake up and people will see one another for who they truly are and not what “they” tell “us” to think.

Perhaps I’m being naive by being that hopeful. But I know when I finally leave this earth, I want to go knowing I lived authentically and with compassion. I want to look back and see that I chose love over fear as my guide more often than not.

There are 525,600 minutes in one year. How will you choose to live yours?

The Gift

I can distinctly remember a shirt I hated as a child because it was itchy. I remember throwing a fit because of it. I still hate itchy or restrictive clothes. I have to have 400+ thread count sheets and they have to be cotton, not sateen. Otherwise they feel scratchy and I can’t get comfortable.

I’ve also always been keenly aware of scents, and it’s helped me in cooking to know just the right type and amount of seasoning to add to get a certain flavor.

I used to love horror but always hid my face when I knew the scary parts were coming. I can’t watch anything where a bone is broken or out of place. It creates an overwhelming feeling of disgust in me.

Starting in middle school, I could play music by ear. I would put on a CD and find the note and play with it on my alto saxophone. I could read music, too, but that wasn’t nearly as fun. When I played in a ska band, myself and another musician once jammed and found this groove and harmony together and it was blissful. That was over 30 years ago and I’ll never forget that feeling.

I was in the gifted classes and loved to write. I loved to create in general. I was bad at drawing, but I loved photography and making “movies” and eventually creating things using apps.

I would stop the car to stare at sunrises or sunsets, or the way the light was hitting the dew on the ground. I still stare in awe at the stars on a clear night. Sitting in nature feels like home, even when its just my backyard. It always has.

I didn’t know that there was a term associated with these things, coupled with my intense feelings of empathy and emotional responses. I had no idea others didn’t see the world like me. Apparently I’m a Highly Sensitive Person, or HSP. This isn’t a disorder, but considered a personality trait; an innate, unchangeable part of who we are from birth.

Of course, the downside to all of this is it also came with intense anxiety/OCD and depression. While the beauty of the world always astounds me, and I can pick up on emotions and connect with people deeply, I also pick up on anger and fear and hate. I learned to cope with OCD. Anxiety became my security blanket, keeping me “safe” from the negative feelings that overwhelmed me so much. It also became a fantastic scapegoat.

In high school, I developed the anxiety and depression. It was like a switch flipped when I started dating my first boyfriend, who wasn’t the best person, and my world went dark. I started failing classes I would have easily passed. I stopped going. I dropped out my senior year, halfway through. I didn’t understand how to handle everything I felt. I was overwhelmed by just existing at that point. I somehow went back to night school and got the final credits I needed to graduate with my class, but the darkness was still there.

Eventually, I found the right combination of medication and therapy to bring me back to life. I’m still here now, and I’m still learning about navigating life as a highly sensitive person at almost 40 years old. Some days, especially now during the second year of the pandemic and after years of political turmoil and hatred sprouting up everywhere, I retreat back to the safety of my anxiety. And most days, I still haven’t figured out how to be alone in the world, to go do something I want to do just because I want to. I constantly worry about being judged or not doing it right or “what if…, ” the worst phrase in an anxious person’s vocabulary.

But I also still stop and stare at the sunset. I still sit outside and feel the breeze and it brings me back to my true self, my core, my energy. I still connect with people deeply and fully, and I’m finding more people like me who understand and can walk with me. I have survived trauma others couldn’t dream of, and I’m still here, able to see the beauty in the world and grateful for the life I’ve been given. I will always have more growing to do, more practices to learn to break the chains of anxiety and embrace who I am at my core. But at least I can do so while fully appreciating the feeling of the sunlight on my skin and the colors of the sunset sky and the brightness of the stars.

Being highly sensitive is difficult in this world, but its a gift I would never trade.

Summertime Sadness

Ah, Summer. The warm air. Crickets chirping. Beach trips. Family vacations. Cookouts. A sense of inexplicable depression and dread.

Record screech

Wait, what?

This time two years ago I was discovering myself and learning to accept myself. I was getting into working out more, had met a really great guy, my son had just finished Kindergarten, pandemics were just in the movies and history books, and I didn’t have cancer (well, I didn’t know I had it, anyway). My Summer had started off phenomenally well. It was the last time I ever felt that Summertime happiness.

PTSD is a sneaky thing.

I think last year maybe it didn’t hit me quite as hard because literally the whole world was experiencing a collective, ongoing trauma. This year almost everyone is getting back to normal and I’m like wait. . . I wanna go back, too. I wanna go back to Summer 2019 when I was Old Stef who was blossoming and doing awesome and having fun and still able to drink wine and get a tan and eat whatever she wanted. I wanna be ignorant to this awful disease and go back to when I hadn’t lost multiple friends to it. But I can’t.

The hardest part of all of this, of any struggle, is knowing we only have two options: quit or keep going. Turning around isn’t an option. Going backward isn’t an option. Undoing the past isn’t an option. And that seems so simple to understand but man is it hard to accept.

I’m learning to live with the pain, the food restrictions/complications, the swelling, and the body changes. I’ve even learned to live with fear of recurrence. This is just one more thing now and it’s honestly the hardest to combat (along with Survivors Guilt but I’m sure they’re related).

I know I’m the only one who can cultivate the peaceful mindset I’m seeking. I know only I can heal what’s hurting inside of me. But I’m so tired of constantly healing. I’m incredibly weary and I just want to rest.

I guess I’m writing this all out because it helps to make it real. It also helps knowing maybe my raw expression of everything will help someone else feel less alone. And I guess that’s where I get most of my strength to get back up and keep going.

Sigh

So let’s go.

Looking a Gift Horse Squarely in the Mouth

Cancer survivorship is complicated.

Every single day is a gift to be met with open arms. Except it’s a gift from your 97-year-old Great Aunt Edna who thinks you’re still 7 and love Pepto-Bismol pink wool turtleneck sweaters with cows sewn on the front. And it’s the only thing you can wear for the rest of your life now. And you hate pink. And cows. And turtlenecks.

So you humbly accept it (it’s the thought that counts, right?) but you don’t necessarily like it. But then you feel guilty. Some of your friends would have given anything for Great Aunt Edna’s gift. What the hell kind of ingrate are you? Then you question whether you even deserve this gift in the first place. Some days you want to say no thanks and hope it’s donated to someone more deserving. . .but it’s your gift. No exchanges, non-transferable.

Eventually you learn to love the gift. You notice the beautiful details. You begin to feel grateful for the warmth it provides and laugh at the silliness in it’s design. You begin to own it. You realize your uniqueness is pretty badass, and you begin to meet other people in the pink cow turtleneck club. These people understand every emotion that comes with wearing it.

There are still days you hate it, don’t get me wrong. There are days you fight putting it on and instead want to lay in bed all day. Then there are days you just sort of stare at it in awe and can’t even explain how you feel. As I mentioned, it’s complicated.

We are an elite club of people who never wanted to be in the club. We didn’t ask to be here and the hazing to get in was pretty intense. But we’re here now. Wearing our wooly, pink, cow-emblazoned garb. And even on our worst days, we always have each other.

Whether you’re hating your gift today or embracing it, whether you’re celebrating or grieving, I’m glad you’re here. Welcome to the club. I love your sweater.

A Eulogy to My Former Self

Today I miss her. I miss her smile. I miss her sarcasm and how she would sit outside on Summer evenings and savor a glass of sweet wine. I miss her love of spicy food and trying new things and pushing the limits of her physical capabilities. I even miss her naivete. Sometimes I especially miss her naivete.

Of course, I’m referring to Stef BC (before cancer).

Buddhism teaches us that attachment is the root of suffering, and that’s absolutely true. If we aren’t attached to anything we don’t suffer. However, unless we’ve reached total enlightenment, we’re still going to experience the painful lessons in life. And I’m far from enlightened. I’m always working on becoming better, but far from perfect.

I guess we could also loosely compare it to The Phoenix, dying and being reborn. Does the phoenix ever mourn the old self? Probably not, or it wouldn’t be able to keep transforming. But maybe, on occasion, at least right in the beginning of it’s new life, it looks back at the ashes and mourns.

Transformation occurs when we can let go of the past. As the adage goes, you can’t drive forward while looking backward. And I think an important part of letting go of the past is allowing ourselves to mourn for a period of time, to get to a point where we can accept that it’s gone, and to find the courage to accept whatever is happening in the present.

I don’t think I’ve properly mourned Stef BC. Most of diagnosis and treatment was spent in disbelief and almost detached from reality. I knew what was happening, I felt it all, but it didn’t seem real. It still doesn’t seem real when I tell my story. It feels like I’ve completely removed myself as the main character, probably my brain’s attempt at protecting me from the trauma I endured. I effectively compartmentalized and dealt with everything without ever really stopping to feel the loss of my self. Well, except for that one time when I first got home from the hospital and punched the mirror. I skipped straight from point A to C and now missing out on B is coming back to haunt me.

If I want to keep growing and becoming a better version of myself, I need to let go of my attachment to the past. Memories are fantastic, and I want to be at a place where I can look at photos of Stef BC and not feel depressed, but rather proud of who she was and how she got me here.

So today (and however long it lasts) I allow myself to mourn. Today I allow myself to feel the negative and accept that it’s normal and healthy to do so. I allow myself to cry for Stef BC, to acknowledge that losing oneself is a valid loss, and to accept that I have to let her go. I’m going to thank her for her sacrifice in allowing Stef 2.0 to emerge. Today I’ll send her out on a beautiful raft and draw and fire the flaming arrow to light her pyre.

Tomorrow, I’ll rise.

Out of the Darkness Comes the Light

Sometimes when I’m feeling particularly emotional, I just start writing. This came to me a few days ago when I was feeling down about post-treatment life. One thing I find so amazing about creative writing is it almost always leads me to the mindset shift I need to pull myself out of the darkness. It allows me to light my own way, in my own way. This time it reminded me I’m not alone.

The Aftermath

I live in a house
On a beautiful beach.
With firey sunrises
And lilac sunsets.
Life is good.

Then the tsunami comes.
No warning. No reason.
I run to shelter on high ground
As my house is torn apart.
Everything is gone.

“At least you made it!”
“You’re so strong!”
“Just stay positive”
And my favorite,
“My aunt died in a tsunami, you’re lucky.”

People send money,
Their thoughts and prayers.
When a new house is built,
And the well-wishers move on,
I’m left alone to clean up the debris.

I look up and down the coast
And notice others like me,
Alone, cleaning up after a freak disaster.
I introduce myself. I tell my story.
And now together, we begin to rebuild.

– S.G.
3/29/21