“…I clawed from the seams
This reflection stings.
Formed and she still breathes.”
My favorite parts of “We Take Form” are actually Chy’s parts.
If you know how much I adore and admire Molly Mess and how much “We Take Form” means to me, that may come as a surprise, but hear me out.
I don’t know Chy and Molly’s entire love story, but I know enough of it to know that it is both beautiful and heart-wrenching.
For the past seven years, we have been living out a similar love story, albeit not nearly as badass.
There are so many sides of this disease that we as a society have failed to even talk about, let alone address.
There aren’t enough conversations about what it is like to watch the love of your life fight to stay alive, to stay with you in this lifetime for as long as they can…even if it is just a little while longer.
There aren’t enough support groups for the psychological/emotional duress our paramours CHOOSE to endure because they WANT to help us to survive more than they have ever wanted anything before.
When you fall in love with such a fiercely independent, wildly beautiful, and strong woman, you don’t anticipate becoming their caregiver, especially before they even have a chance to grow old and gray.
You might not even experience genuine fear when you first get the news. Often, it manifests more as concern. After all, your partner might just be the strongest woman—no, the strongest person—in the world. If millions of other people can defeat this, she certainly can too. All you need is a battle plan.
Tick, tick, tick…we wait for biopsy results and to learn if my margins have cleared.
When friends and family ask, you keep repeating the same lines…
“It’s been challenging, but we’re optimistic this might be the last time.”
They send you home with a sheet of paper containing post-op care instructions or some pamphlets about what you can expect during treatment. But no one likes to discuss how much time you will spend in the bathroom together.
EVERY morning and evening, cleaning their wounds of war…
…and that becomes your best-case scenario at this point…
…I am not talking about the effects of radiation and chemotherapy, which I have been lucky enough to avoid thus far.
That is why we have chosen to take such a brutally aggressive strategy with this. If hypervigilance and an ever-going cycle of countless surgeries can help us avoid it ever reaching my lymph nodes, so be it.
"Cut it out, cut it raw.
Cut it out, cut it raw."
Melanoma won’t come for me.
I am coming for it.
***
There is a reason why I keep going back to the dermatologist when I know damn well what they are going to find.
I refuse to let cancer take any more than me than it already has.
Melanoma stole my grandfather, an uneducated Appalachian man who treated his undiagnosed schizophrenia with copious amounts of alcohol and couldn’t take care of himself even when he tried. His most redeeming quality was his insatiable work ethic. He was a workhorse of a man who scraped by doing intensive manual labor outside in the sun.
When I was seven years old, my grandfather pointed a shotgun at me and told me that he was going to kill me. To be completely honest, I justifiably avoided him for about a dozen years after that despite his best, albeit often drunken, efforts to make amends. Every so often, my dad would find him deliriously roaming the streets, homeless and often covered in his own filth, but never without his poison of choice concealed by a paper bag in his right hand. He’d bring him home, and things would get better for a time.
Tick, tick, tick…my entire life has been a ticking timebomb.
But like clockwork, his paranoia would begin to increase, and then the angry outbursts followed. In an attempt to quell his demons, he would turn to the only thing he knew might quiet the raging voices inside his head. More often than not, he drank himself into a stupor and managed to drown out his madness at least momentarily. But there were nights like the night he pointed his gun at me when he couldn’t drink enough or couldn’t drink fast enough. I don’t think he realized he was pouring gasoline on an already raging fire. We all knew that on those nights, if his demons consumed him, there would be hell to pay, and, without fail, those nights always came.
Luckily, after the night he threatened to murder his own grandchild, my family realized that my grandfather was not to have access to firearms. However, those nights unfortunately always ended with my father throwing his own parent out on the street to avoid any more harm befalling his family.
By the time I moved away for college, I was convinced that someday I would receive a call that my grandfather was found dead in a ditch. Instead, I received a call that he was in the hospital undergoing an emergency amputation.
My father had learned over the holiday season that my grandfather was living in an abandoned garage somewhere and wanted to check in on him. By the time he found my grandfather, he was in terrible shape. He was delirious in an entirely different way and struggling to breathe. He also had a gigantic mass under his right arm, roughly the size of a softball. My grandfather, not that he cared whether he would live or die, had convinced himself it was only a cyst until it started to grow exponentially. By the time he realized that it might be cancer, it was already too late.
The cancer had already metastasized, and it was everywhere. The emergency amputation wouldn’t save his life. He was already dying, but it could buy us some time.
It bought us approximately nine months.
However, this story has a silver lining. As the doctors questioned how the situation could have possibly come to this, they realized that my grandfather was clearly mentally ill and that he had been suffering long before cancer started festering. He finally got the help he so desperately needed his entire life. He was properly diagnosed, adequately medicated, and received permanent housing at a care facility. I got to meet the man behind the illness for the first time.
After he lost his right arm, he would practice writing my name with a crayon in his non-dominant left hand.
For a few short months, I had the grandfather that seven-year-old girl deserved before cancer stole the man I had only just met at 62 years old.
***
Tick, tick, tick…I will keep buying myself more time than he ever had…even if it costs me a pound of malignant flesh.
I can only imagine how powerless Shawn must feel at times, especially when I receive the post-biopsy phone call. I can see it in his eyes occasionally, but I hope I never have to experience those emotions for myself.
Honestly, I think he has the more demanding role to play…I think I am better at fighting melanoma than I would ever be in his role…because I just have to fight. That is easy for me.
He has to passively watch me struggle and occasionally suffer when there is little to nothing he can do while simultaneously holding down the fort. He is forced to channel all the energy he wishes to pour into me for my war into something…anything…everything else. I can fight this so aggressively because I know he will care for the rest.
No one prepared him for this. Not enough people talk about what it is like to watch the person you love most, someone you would literally give your life for, endure the ultimate test of strength, survival, and courage, knowing you can’t fight this battle for them. All you can do is actively support. He was never prepared to see his soulmate battle for her life.
They sent him home with a few sheets of paper on how to take care of me as we stitched away the disease. That’s it. Honestly, he does most of the work. When WE finally beat it back into submission, I am the one who is celebrated as the survivor. But that man has survived challenges I hope I never have to endure.
He was never prepared for this, and I am struggling to convey it in words.
But Chy conveys it. You can hear it.
“Always forward, never back
Can’t lose sight, or I’ll fall off track
We take form
Always stand the this of time
Sing with me this battle cry
We take form”
During our third or fourth round with this, Shawn said he felt like a glorified cheerleader. I don’t try to correct him in these moments; I just try to assure him that his feelings are entirely valid but aren’t aligned with how I perceive our shared reality. He is my biggest cheerleader; that much is true. However, he is so much more than that. I wish he could see himself through my eyes, especially in times like these. I wish he knew his own strength and understood the immense depth of his courage.
The first time I found out that I needed to step into the ring with this, we had only been together for about six months. I thought I loved him before I got that phone call, but I knew I wanted to marry him by the time the final stitches came out.
What most people don’t know is that he was the reason I initially went to the dermatologist in 2017.
The first time I saw him play drums, I was enamored by it. I could tell that this was his refuge and his liberation. I wanted to exist inside that moment for eternity before a tidal wave of uneasiness washed over me. I knew at that moment that I already had cancer. It was like he was playing to the rhythm of the ticking time timebomb that I just realized was genetically embedded within my skin.
The next morning, I made the call.
Tick, tick, tick… I would carve it out myself if I had to…if it meant enjoying one more day with you.
We joke that we have become pros at this. Each time Shawn removes my surgical dressings for the first time, he winces. I fake a laugh and say something like, “Meh, I have been through worse…”, which, depending on your perspective, may not be untrue.
I mean, my grandfather pointed a gun at me when I was seven years old, and nothing really got better until I met Shawn 21 years later. Sometimes, it was worse…but having to endure this repeatedly has taken its toll on us.
Most people will never know what it is like to watch your soulmate battle for her life while she is in her 20s and/or 30s.
The exhaustion of going through the motions that are keeping her alive.
How it feels to see her strength falter at times or the excruciating trepidation you experience as you watch her get tired of fighting.
The devastation you feel when she, in her darkest moments of self-doubt, expresses that you aren’t obligated to stay and help her fight. How she wishes you were free to enjoy the prime of your life instead of taking care of her.
Tick, tick, tick…I will keep cutting away this disease as long as you stitch me back together once I have won this battle.
***
The music that Molly and Chy have created with their collaborators in Some Kind of Nightmare has not only changed my life but has saved it in numerous ways.
I am not talking about life in terms of quantity of time. I am talking about life in terms of quality.
They have changed the way I perceive myself and the way we battle this disease.
I used to question if there was a point in enduring all of this if I felt repulsed every single time I saw my reflection in the mirror.
I had finally stopped hating myself for not conforming to white, cisgender heteronormative beauty standards. I was no longer forcing myself to be a size smaller and take up less space. I was just starting to accept, love, and embrace my body for the first time before all these surgeries left me disfigured.
I swear, every time they cut into me, it is like my body responds in such a hostile yet protective manner. It is as if the body keeps the score, and my body is screaming, “No more! I won’t let you hurt her again! She has endured enough!”
You see, the issue that is causing me such severe scarring while others are left with faint whispers of trauma laced so delicately across their skin is that I heal too fast.
It seems the combination of too much cortisol and excess collagen isn’t a good thing. When your body already thinks you are in constant danger, when you are always in fight-or-flight, it doesn’t respond too kindly to someone slicing you open. My skin swells; it grows back thick and hard. It is like my body is reverse engineering protective armor to shield me from any future harm.
These are more than just battle scars. They are my sign that my body is just the first stop in this healing journey, which is why I had to take a step back.
The skills we use to survive are different from the ones we need to thrive.
I need to learn new skills.
I have to take better care of myself in order to convince my body that we are no longer in any danger.
That starts with accepting myself, including my scars, and all the things that have happened to me without resistance or trying to change them. This process began on March 26th, 2022, when I saw Some Kind of Nightmare for the first time. As Molly cupped her reformed breast and lifted her shirt to reveal her scar of survival before the start of “We Take Form,” I experienced the most profound paradigm shift.
For the first time, after five years and numerous surgeries, I recognized that there was beauty in my own scars. I was forced to question why I thought my scars were repulsive when I thought Molly's scars made her even more beautiful.
Since that night, I have added three more entries to my Scrapbook of Scars and will have to add at least two more before this is all said and done. But these chapters in my story are more manageable now that Some Kind of Nightmare provides the soundtrack. Things are less difficult when you have songs that prove that you are not alone, especially when the last line of the last verse foreshadows the potential of a breathtaking future.
"There she stood on top the world.
Scarred and she is formed.
And we THRIVE…
And we THRIVE…
And we THRIVE…
And we THRIVE…
And we THRIVE…
And we THRIVE…
AND WE THRIVE!”