Affliction and Affection

I’ve spent the past week in the hospital, felled by my own body in an ongoing flare, the severity of which pride would not let me admit. Though I have been drifting in and out of a haze of anti-nausea drugs, there has been some time for reflection, mostly on how much I hate being here. This is not my first hospitalization, nor will it be my last, but it is my first stay at this particular hospital. All hospitals are different, and yet, they are all the same. Infection lurks around every corner. Objects in the room are simultaneously sterile and tinged with sickness.

There is little to remind you of your humanity here. Your bodily waste is carefully collected and measured, you are clothed in a one-size-fits-all gown that somehow manages to simultaneously be formless and leave little to the imagination, and you are identified by a QR code on your wristband, which is scanned every time anything new is put into your body. Really, your body is no longer solely your own. It is filled full of tubes, connected to pumps and bags and a machine, which trails behind you, wherever you go, an unwanted, mechanical companion.

I should say that I am grateful. I have a good medical team, attentive nurses, and a private room. I believe I have been receiving excellent care. However, the hospital is not meant for comfort, but safety. It is cold, and lonely.

I will not be leaving the hospital alone. Instead, I will be adorned with a tube in my arm, further distancing me from my humanity. A weapon with which to stave off my death that still brings me closer to my mortality. It is more than a mere tool, but also a symbol: a permanent notice of my body’s fragility, whose occupation leaves me feeling partial, incomplete.

Yet, in the midst of the aseptic and the hygienic and the impersonal, I am granted a few last vestiges of personhood, of existence as anything but bleak and stark and soulless. Of all the reminders of my humanity, there is one that is the biggest, the brightest. And this is the one I now await.

An unnecessary curtain hangs over my doorframe. I wait for the door to open, the sound of the curtain pulling back. I live for the sight of his shoes under it, foretelling his beaming smile, his comforting presence. I bask in it, and for the meantime, I am human. For the meantime, I am whole.

Mixed PICCkles

Today, after almost a year of having it in, my PICC line (which I have dubbed picckle; this is probably less hilarious than I think it is) was pulled out of my arm.

I have mixed feelings about this turn of events.  I am very, very glad to no longer be living with the risk posed by having a foreign body in a major blood vessel (line infection, blood clot).  I am happy to no longer have to shower with my arm covered in saran wrap.  I am happy to have my arm back.  I am scared shitless.  While it’s true that I haven’t been on TPN for a number of months, my body will now be riding without training wheels, so to speak, when it comes to eating.  And that makes me nervous, especially since my stomach has been behaving in a less-than-stellar manner these past few weeks.

This was the first time I’ve had a PICC line, and my first time I was on TPN, but it almost certainly won’t be the last.  In fact, my care team has already discussed long-term central line options.  For now, though, I am concentrating on how it feels to be without the line, as temporary as it may be, and re-acquainting myself with the inside of my left arm, a place I haven’t been able to touch for almost a year.

Even though there is something palpably missing, I feel whole.

My broken stomach, my broken heart

Right now I'm trying really hard not to think about my superior vena cava.

Clearly, I'm not doing a very good job.  I don't usually spend time thinking about my superior vena cava (or trying not to), but at the moment, I can't seem to forget about its existence.

Why?  Because, at this moment there's been something in there, the tip of a peripheral intravenous central catheter (or PICC) line.

Why can't I forget about my superior vena cava?  Because, at this moment, for the past two weeks, there's been something in there, the tip of a peripheral intravenous central catheter (or PICC) line.

It has been two weeks since I have been on total parenteral nutrition, or TPN.  For those of you who don't speak medical jargon, that means that I have been receiving most of my nutrients through the PICC line.  Every evening I carefully hook a bag of white liquid up to a pump and some tubing, which I then carefully and, trying to be as clean and precise, trying to maintain as much sterility, as possible, I hook up to my PICC line.  This is what will be feeding me, what will be keeping me alive for the next 2-6 months while my gut will (hopefully) rest and reset itself.

I've barely been ingesting anything by mouth at all--what I do take in is mostly clear liquids.  There've been a few crackers here and there, some soup with rice in it, but mostly it's tea, juice, and broth.  (And the requisite pills.)

This is my first time on TPN, and it is almost certainly not going to be the last.  To be honest, I feel lucky I've made it this long without it.  Most people with GI motility disorders who have mito have to go on it at some point in their lives.  Many children with mito are put on TPN soon after they are born, never able to drink their mother's milk or eat normally.

I'm finding it an incredibly relieving, if somewhat heartbreaking experience.  I've only thrown up once since being discharged from the hospital--previously, it was nearly every day--as I no longer have to try and force myself to eat enough food to sustain myself, which my body physically cannot handle.  I've been in far less pain and I've been much more energized.  I've grown accustomed to the quiet whirr-whirr-click of the pump as I lie in bed at night.  At times, I almost find it comforting, a confirmation that even if my body parts can no longer do their job, medicine can pick up the slack, and my body can be sustained through science.

And now we come to the heartbreak.  Not only do I miss the social and pleasurable aspects of eating, but I'm finding myself mourning for my lost ability.  Losing my functions is nothing new for me.  I've been slowly degenerating since the age of seventeen, losing one organ after another.  There is something so essential, so primal about hunger, about the urge to eat, that I'm finding the loss of ability is difficult to deal with.  The plan is for this to be temporary, short-term (up to six months) but it very well may be permanent.  There's more grief here than there's ever been anywhere else.

But despite all that, I'm managing to stay fairly positive.  I feel hope for the future, whatever it may hold.  And I'm trying to find up sides to the situation.  For instance, I’ve found that when life gives you PICC lines, get cute PICC covers to shield them. 

 I'm getting used to the routine of setting up the TPN and taking care of the line, and it's no longer a source of immediate fear for me.  But not all of the aspects of TPN are getting easier.

Today I had my dressing changed.  Until the PICC line is removed, my Home Infusion Therapy (or "hit") nurse will come to my house once a week to take my vitals and bloodwork, ask about my progress, and change the dressing.  Changing the dressing is a terrifying experience for me.  While I've grown moderately comfortable with the line--when I can stop thinking about my superior vena cava, that is--I cannot overcome my feelings of defenselessness.  Each time I find myself sitting with my arm crooked in an unnatural position while my masked nurse intently wields adhesive and antiseptic on the opening of my vein, I find it difficult not to tremble.  I am completely exposed, at my most vulnerable, my heart laid open to any assault by microscopic invaders, my soul laid bare for anyone to perceive my weakness.

I hold my breath and look away.  It feels as if the change is taking forever, but soon she is finished, taping up the site and replacing the lumen extensions.  She takes my blood and, unusually, I feel it coming out of my vein.  The catheter is long and I am small, so there's a good 27 cm that the surgeon left outside of me.  The freshly-scrubbed skin that the line is taped against feels cold, and so as the blood rushes out of my vein and into the catheter, I feel the warmth of it against my skin, reminding me of its purpose, to sustain life, my life--a purpose which will it will no longer be able to fulfill.  How different the blood feels, leaving my veins, than the chilly mixture of proteins, sugars, and fats that I have to hook up to every night and yet their function remains the same: to keep me alive, and healthy.