It’s really funny growing up and realizing how God grows us and teaches us certain lessons that we never envisioned having to learn. Those closest to me know that I’ve been vehemently avoiding getting a portacath for infusions, despite my veins being scarred and IV placement getting harder and harder by the week. And to be quite frank, my reasoning behind this stubbornness is stupid. Infection risks and complications aside, my biggest hesitations had more to do with the emotional implications - and vanity. A prominent scar is something I just wasn’t willing to agree to.I was quite hypocritical in a sense, too. Seeing scars on OTHER people just made them even more beautiful, knowing the stories they must have endured to earn them. Scars have always, to me, signified bravery, courage, and strength. But me? No thanks. Not this girl! Not the girl who is far too “healthy” to need a port, whose identity encompasses so much more than the diagnosis she has. No, not me, thank you very much. I’d rather not have any physically identifying features to remind me and others of the battles I’ve faced and the war I am still fighting daily. I never in a million years imagined that this would become my personal reality.
This week, though, I’ve had to come to terms once and for all with the one thing I've been struggling with for over a year : the true medical necessity for a port.
One thing I've realized in the year of wrestling with this? Knowledge is power, but knowledge can also be a double edged sword. I know far more than the "average" person about the functionality, surgical placement, and subsequent access of a port. I know what a port placement surgery entails. I know there are serious risks of central-line associated septic infections. I know that each port access needs to be done in a sterile, controlled environment. I know that sometimes ports become clogged or don't function properly and require TPA or even surgeries to repair. I know that an ER trip and subsequent blood cultures are required for any fevers, even in the context of an unrelated illness. And maybe all of this knowledge has just added to my anxiety instead of remedying it.Its quite ironic, honestly, the freak out of epic proportions that's happening in my world right now. I mean, come on, I teach coping skills for a living.... you would think this should be no big deal. But nonetheless, I am a vulnerable hot mess over all of this. I have, more than once, taught kids and families about ports, their uses, their benefits and their risks. I’ve provided in depth preparation for surgery day and for port accesses thereafter. I've helped kids build their "coping toolkit" prior to each access and de-access. I've talked to kids at length about being brave, facing their fears head on, and embracing inner strength - but yet the emotions I feel as I try prepare myself for the exact same things are like nothing I could have ever imagined or prepared myself for.It isn’t about the surgery, or the recovery that follows. It isn't about the risk of infection. And truthfully, I'm no longer even concerned with the scar. It’s really about admitting I need things that “normal” people don’t need. Admitting that I’m not healthy - no matter how fiercely I pretend otherwise. Admitting that I may never be able to live the exact carefree lifestyle of my peers. Admitting that ultimately all of this is out of my control, no matter how badly I want to manipulate the situation on my own. Admitting that I'll need to rely on others' help on the day of surgery and for a while thereafter.The truth is that I work especially hard to appear “normal”, both to others and myself. I show no outward signs of my illness, and I like it that way. I repeatedly tell others "i'm fine" even when I'm facing inner turmoil, because I want to be the unstoppable girl who can conquer anything.If this past week or two is any indication, spending all this time and effort fooling myself has only been a huge disservice. Maybe you could even call it "denial". Because now a minor surgery with relatively low risks has become my complete emotional undoing.
Nevertheless, surgery date is set and the countdown is on: in just 43 days I’ll be bionic. In just 43 days I'll undergo a procedure I've taught other about but that I've never considered having done to myself. In 43 days I'll have to put those coping skills to the test. And hopefully in 43 days I’ll be a feeling a whole lot less panicked and a whole lot more brave.