As the eighth anniversary of my first surgery approaches, I find myself recalling the days leading up to it and the events that followed in vivid detail, as tends to be the case each year. I don’t really do it with a sense of brooding or sadness; often times it feels as though I’m almost watching a highlight reel of someone else’s life, as I still occasionally struggle with incorporating both halves of me into the same person, if that makes any sense at all.

With so many surgeries occurring over a two year period in my life, one of the two that stay with me the most was the first surgery I had, the emergency colectomy done on November, 2^nd, 2006.  I know why the first one is so important, of course, as that is the day my life changed forever.  It is the day I was given a second chance, and a day that my worst fears (at the time) were realized.  Up until that day, regardless of how horrid I felt, how completely frustrated, isolated and in obscene pain as I was, my worst fear was the dreaded ostomy bag.  Until that day, all my agonies were invisible to the outside observer, my friends and family included.  There were no scars marking up my body showing where I had been cut, where parts of me had been removed.   As a self-accepted control freak, I preferred it this way.  While in the privacy of my own company, I could be curled up on the bathroom floor, lying on a blanket and clutching a heating pad to my abdomen as I sometimes cried, but more often just stared into space, dissociating from my body and all that was happening to it as some last-ditch attempt at self-preservation.

The key was that no one else had to know this. So long as I knew about public appearances or events in advance, I could entertain my ridiculously long preparation rituals, which included abstaining from any and all food for at least 24 hours to ensure that I could keep the pain in check, taking narcotics (prescribed, of course) to kill what pain was still there, putting in hair extensions to cover up my ever increasing hair loss, and layers of makeup to conceal rather theatrical dark circles under my eyes that refused to disappear and skin that wasn’t a normal shade or tone given my vitamin deficiencies.

To that end, I think sometimes the best (and simultaneously, the most frustrating) comment I would get from people, close friends and family included was “You look great!”, as if somehow stating that out loud lulled them into a delusional fairytale, one in which I wasn’t sick. While I desperately wanted (and still do) to be seen as “normal”, it also infuriated and isolated me even more.  Regardless of how good of a master I had become at concealing the evidence, how could those who knew me best not see that I was spiraling into a mere shell of a human being?  Of course, I know now that denial is a powerful ally, and others were having difficulty processing what they were witnessing me go through as well.

It was that first surgery though, that in a way saved us all, me included, from pretending that everything was really okay, and brought me back into the present like a kamikaze pilot. Now there was an angry scar bisecting my abdomen and a plastic bag hanging from my stomach like the flag of an enemy country.  I could look in the mirror and as much as I tried, could not will away the image of my new reality, and while I know that I continued to disconnect from my physical presence over the course of the next few years, seeing those scars gave a face to the villain against whom I had been fighting for the past four years.  No more was the ostomy bag my worst fear – death was.

Of course, clothes could cover my body’s new landscape, and since I was so protective over my gutted abdomen, very few people ever saw me with the ileostomy, including my then boyfriend. It took me a year or two to get familiar with my body again after the last surgery I had to reconnect my j-pouch in 2008, and I finally got up the confidence to say “fuck it” on a family vacation in Costa Rica that year.  Realizing that I knew no one on the beach and would never see these people again, I wore a bikini for the first time since I had become sick.  People stared, I’m not going to lie, but in that one freeing moment, I realized that I no longer gave a shit.  I loved my scars for what they stood for, and what they reminded me of every single day.  They were proof, both to myself and to anyone forced to look at them, that my body has been to hell and back.  No more pretending, no more bullshit.

There are still times when some close to me utter that line “but you look great!” and I cringe inside, recalling the previous night where I didn’t get any sleep because I was running to the bathroom and soaking in the tub every fifteen minutes, recalling the five different meds I’ve taken that day so my joints wouldn’t be stiff and swollen, my stomach would behave and the nausea diminished. I realize now that as I’ve had my own journey with accepting the fact that a hellish beast lies within me, and that within that same body lies the strength that rises to fight it every day, others may still be struggling with associating these two halves of me together, and its likely not an easy thing for them to process either.

The scars are a rearview mirror of sorts, reminding me of where my body has been, and where it very well may go again at some point in the future. They are a reminder to stay in the present, to fully accept my past for what it is and to be grateful for the future that I have been given, regardless of the uncertainty it may contain.  I hope those closest to me will eventually be able to not just look past them but actually see them for that very same thing, thus finally being able to accept me in my entirety.

There’s a song by Tom Langford that I heard at one point during what has been my worst and most difficult recovery; I downloaded the song because it was beautiful and resonated so deeply, but rarely let myself listen to it because it still brings back painful memories. The lyrics to it are incredibly evocative of how I have felt and sometimes continue to feel as I navigate the more difficult times with my illness.  I’ll leave you with the words to the chorus, a haunting melody that somehow seems to encompass everything about this post in its own way.

“I would dive into the bottom of the well

Looking for you

Breaking the spell

Oh, you’ll never know and I’ll never tell

All that I am

Heaven and Hell.”

 

And with that, happy eighth anniversary, Dr. S. Thank you for keeping the fighter in me alive and well, even when I was so tired and just wanted to quit.  And to both of my mothers, who worked tirelessly with me throughout my recovery, along with Aunt Susie, Judy and Nicole, happy anniversary to you, too. Your kindnesses during my worst remain some of my fondest memories to this day.  To my husband George, apparently you were the reality I was fighting so hard for at the time, though I hadn’t the faintest idea of it then.  Thank you for loving all that I am.