Part 3: Understanding/Unity
By: Saylor Gibbs (@saylorkgibbs)
I am not normal I am extraordinary. I chant this to myself even now, one-month post-mastectomy.
The past month has been filled with pain and joy, tears and laughter, sadness and gratitude. I have been battling some of the most difficult medical symptoms I have ever dealt with, but I have also been filled with a very profound sense of thankfulness. What my struggle tells me every day is that this crazy world we live in is filled with duality. I do not mean to say that it is necessarily always black-and-white, but rather that there are two sides to every story, two faces on every coin. I can say, however, that without a doubt, if I had not felt loved and supported by such a unified system of superheroes, I could never have navigated these difficult waters I have had to swim.
Learning to love my body post-mastectomy has been hard, and I have been filled with a lot of self-pity and deep despair that my body will never truly be the same, nor will my relationship with my body ever be what it once was. But, perhaps this is a good thing. I have struggled for the past decade with body dysmorphia, eating disorders, physical trauma, and PTSD among other things. My mental health has been in tatters, and it has been this past year, the most difficult and painful year of my life, that has led to me taking back the reins and re-gaining control over my life.
After my bilateral mastectomy with immediate reconstruction with tissue expanders, I spent nearly a week in the hospital recovering. I needed round the clock care as well as constant pain management, and they were ever vigilant with IV and oral antibiotics - a triple course, to boot - to prevent the ever feared postoperative infection. In my case, I was at greater risk for postop infections and bleeding because of my immediate reconstruction with tissue expanders. Tissue expanders typically have a higher incidence of postoperative swelling and infection than a mastectomy without expanders.
Given my already sky-high pain levels, my postop pain care was tripled. I was put on stronger types of pain meds at higher doses in order to manage both the surge in my nerve pain as well as the crippling postop pain. I will admit, there were times when I was unsure that the pain would ever end, or at least ever get better. I am sitting here four weeks later, however, and my pain has decreased enough that I am no longer barely living from one minute to another with what feels like a wildfire raging beneath my skin. My care from both the Stanford Plastics and Reconstruction team as well as the Stanford Pain Clinic has been comprehensive and top-notch. Without the support of my wonderful and experienced physicians, postop life would be ten times more hellacious than the low-level misery I’ve experienced. I’d like to thank my doctors for showing such a unified front taking care of a patient whose history and symptoms are far from easily managed and who is often overlooked, mistreated, and misdiagnosed. Without them - and much needed psychological and psychiatric support - I wouldn’t be here today.
It took me almost two weeks post-surgery to build up the courage to look beneath my bandages. What I saw in those early days will haunt me for years to come. Huge slashing scars underneath each breast, the prominence of my sternum and every single one of my ribs, the sagging skin and bloody transplanted nipples falling apart day by day only to heal and then break again. The tubes sticking out of my sides attached to drains that gathered my blood and other fluids. It made me nauseous. And angry. And heartbroken. I felt like a visitor in my own body - and not a welcome visitor at that. I had to expose my naked, scarred flesh to my loved ones almost daily; I required assistance in drain and wound care to ensure proper healing. Being laid bare like that, for everyone around me to see, was humiliating. I can taste the bile rising in my throat as I think about it, even now. My father became my ever-present companion, usually in silence, holding my hand in the doctor's office as tears rolled down my cheeks. I struggled a lot that first month to find words that could accurately describe this whole experience and I’ve found only one: traumatizing.
There were times I thought I would never survive. There were even times when I wished for death, as my body was wracked with spasms and pain that were more intense than I have ever dealt with before. I have felt like I was drowning in a well of deepest despair, and I have felt utterly alone and isolated in my experience. The truth is, however, that I am just one person who is part of a great army of warriors that have fought and beat cancer. And I hold in my heart a special place for those fallen comrades who we have known and loved, admired and lost. I know now that I am never as alone as I think myself to be, and that there is power in numbers.
I have to believe or at least try to remember that one day this pain will or could be a distant memory. I can’t spend every day wallowing and feeling sorry for myself while also expecting to go places and pursue my dreams. Nothing ever comes from staying in your comfort zone, even if your comfort zone is its own kind of uncomfortable (as those with chronic pain will tell you), and evolution is only brought about by change and metamorphosis. if I have a pity party and refuse to do things that cause me discomfort I will never change. Ad some people aptly put it, you “grow through what you go through,” and if I prevent myself from growing from these experiences - some of which have been thrust upon me, others of my own making - I will never see the other side of the coin, I will never read the next chapter of my story. If I ignore the signs I have received from the universe this year, I ignore my greatest opportunity to become an even more perfect version of what I already am. This is not to say that I am a perfect person, but rather, I mean that we are all a perfect version of what we are in any given moment. Works of art are art from the very first brush stroke; every time the brush meets the canvas, it is a wild expression of that divine creativity that resides within each and every one of us. But, it is easy to forget that when all we look at - all we praise -is the finished and framed masterpiece.
So think of today as the first brushstroke of the masterpiece that will be the rest of your life. Find the little perfections that bring you happiness, the small things that spark joy, and acknowledge those things which bring you pain and sadness. don’t deny yourself the opportunity to take part in your own metamorphosis, as everything is changing around us all the time. In a way, change is what unifies us all. Time goes by, seasons change, we grow old.
I have never witnessed a community of people so in tune with/unified by an understanding of change as the rave and festival community. They witness the fame and the fall of artists, the seasons shift their fashion in an explosion of vibrant color and glitter; but above all, they move to the heartbeat that keeps their community so alive: the music. However, just as fame can be fickle and as the seasons cycle onward, a heartbeat rises and falls and is ever-changing. My health struggles have brought me closer to this community than I am even with people I have known my whole life. The rave and festival communities see the change in everything around us and become one with that change rather than resist it. Having breast cancer has taught me that change will come when it comes, and that to be ready for it you have to surrender to it.
As I lay in bed each night, I can feel my heart beating, I can feel my skin stretching to accommodate my new breasts, and I can hear the voices in my mind both begging for respite and rejoicing in gratitude. Because the fact of the matter is, I am alive. I am no longer a cancer patient, but a cancer survivor. This is a luxury and a privilege not afforded to all who fall ill with any illness let alone with cancer. But I am living proof that illness of any kind doesn’t have to be a death sentence.
Although the result of my mastectomy has left me feeling a bit outlandish in my own body, emerging from month one and transitioning into month two has also brought me a greater sense of peace with myself. I hold these two truths simultaneously, and I meditate on them every day. Each passing day, each week that goes by, and every month that melts away into a new and life-filled season, I am learning to listen to those voices in my head that, although they may be saying things that feel like opposites, are teaching me about the duality that is hidden in human nature and in life. It is with this understanding that I, armored head to toe in this new wisdom, take my next steps into the unknown. I can’t predict where my life will go from here, but I sure am excited to find out.