Like many seasoned chronic illness patients, I am very skilled at watching Netflix for hours on end. One of my go-to series is Grey’s Anatomy and I’ve seen every episode more times than I care to admit.
Now, I think we all know that you can’t believe everything you see on TV, particularly when it comes to medical dramas. Sure they have medical consultants on board, but they still get it wrong a lot of the time, at least they seem to when it comes to situations relevant to my life. For example, they mention gastroparesis in one episode but they incorrectly explain the function of gastric neurostimulator and the prognosis of the patient having it implanted. In another episode they reference the TPN a child is receiving but then the entire set up they point to is one for a feeding tube.
So there are clearly some factual errors. But I think there are some emotional ones, too.
There is an episode wherein one of the surgeons finds himself a patient in the hospital unable to swallow and in need of a temporary nasogastric feeding tube. He refuses, and no one wants to argue with him because, as one of the doctors says, “You know as well as I do that a feeding tube is psychologically devastating. It takes away a man’s dignity.”
This episode aired on October 3, 2013. I didn’t watch it that night because I was in the hospital with my first feeding tube. After I was discharged home with that temporary tube in my nose, I let Grey’s Anatomy episodes accumulate on the PVR for a while because I needed a break from anything hospital related. It wasn’t until November or December, after my tube had been pulled, that I got around to catching up on Grey’s.
Let me explain what my life was like during that time.
Simply put, it was awful. I’ve been through a lot but I can safely say that those were the hardest few months of my life. I was up against a digestive system that was no longer functioning properly, yet I was trying to eat enough to avoid needing a permanent feeding tube. I was so sick and so tired.
And I was scared. Terrified, actually. I didn’t want a feeding tube and yet I didn’t know how I would survive without one. I was also confused, because one doctor was trying to convince me that I needed a tube, another wasn’t so sure, my friends and family were encouraging me to keep trying not to need one, and I was just an anxious ball of guilt and self-doubt. It was a big mess of everyone wanting what was best for me but no one knowing what that was.
That’s what was going on in my life when I watched that particular episode of Grey’s Anatomy and heard a (fictional) doctor say that feeding tubes are psychologically devastating.
I’m on the other side now and here is what I know.
There are realities more psychologically devastating than having a feeding tube. Being so sick you can’t eat and watching yourself wither away is psychologically devastating. Crying in your doctor’s office because you are worried you might die is psychologically devastating. Watching your loved ones suffer as they watch you suffer is psychologically devastating.
When I first watched that episode I was going through a psychologically devastating time in my life. And when I heard those words, all they did was stir up the giant muddle of opinions, feelings and fears I was trying to make sense of. I was fighting so hard against something I so desperately needed, and all that statement did was justify my fight.
Definitely, there are challenges, both psychological and physical, that come along with getting a feeding tube. I did not love having it, but I did love what it offered me. It gave me a chance to get back on my own two feet, to take back a little of the independence I had lost. It gave me a chance to go from someone who was dying to someone who was living. These are not psychologically devastating things. Quite the opposite, these are empowering things.
I’ve had some health hiccups since then and so I’ve taken some steps back, but it doesn’t change the fact that my feeding tube allowed me to take steps forward. It filled that devastating time in my life with hope. It allowed me to start rebuilding.
So when I watched this same episode the other day, and I heard those words again, it brought me back to that time in my life when I heard them for the first time. I wish I could go back and tell that terrified version of myself that the fictional doctor didn’t have to be right, that I could prove her wrong.
There are a lot of devastating things in this world, but my feeding tube was not one of them. My central line is not one of them. And even though there are devastating things, there are also wonderful things.
There is a whole life I get to live, all because of these tubes and lines. Me and millions of other people.
And there’s nothing devastating about that.