In so many ways, illness challenges us to question who we are. Often, it takes away parts of our identity and leaves us wondering what is left to take. If that isn’t enough, we then find ourselves being handled by strangers and stripped of our independence. Despite our age, we all must struggle with the feelings of helplessness that usually accompany childhood. Like a passenger on a runaway train, we have no access to the brakes and can only pray that the ones in charge will take good care of us. It is quite a disturbing place to be.
The day after my first transplant, a team of physical therapists descended upon me and took me for a walk around the halls of ICU. I was still on the ventilator so they had to disconnect me from the machine. As a replacement, they attached the tube in my lungs to a bag. One of the techs had to squeeze it to breathe for me. I was miserable and very freaked out. With each squeeze of the bag came another surge of anxiety. The techs were happily chatting about their weekend or some other non-medical topic. What if the one breathing for me lost focus and missed a squeeze? What if he got off rhythm? I couldn’t talk and it was all I could do to take the next step. My most basic bodily instinct, breathing, was being controlled by someone whom I had just met and who didn’t seem to take this responsibility very seriously. I was at his mercy in a way that I had never been before and couldn't have imagined. Of course, he did his job and I was returned to my bed unharmed. Nonetheless, I was thrilled to be reconnected to the machine. It seemed much more reliable and made me feel far less vulnerable.
I was filled with tubes. I had IV’s in my neck, a tube draining my urine and what felt like a fire-hose coming out of my nose. My mother and my husband were by my side as I underwent my first big contrast study after the Nissen Fundoplication. When the test was done, they offered to wheel me to my room in order to avoid the long wait for transport.
The test had been done in the basement of the hospital, many floors and a few wings away from the safety of my private room. Getting back proved to be a challenge.
My husband was pushing the wheelchair and my mother manned the IV pole. Sometimes, the long IV tubes would get caught in the wheelchair. It was a much more difficult endeavor than either one had anticipated. With caution they made their way through the hospital and we ended up in the familiar territory of the main hospital lobby. This lobby stretches along the entire front of the hospital and leads to the elevators that would take us back to my room.
I had never noticed it until that day, but not many in-patients are in that lobby. I was the only one I saw in a gown. I was certainly the only one with a fire hose taped to my nose. I became acutely aware that my urine was on display. I felt terribly embarrassed. I put my head down and braced myself until we had cleared all of the many fixated eyeballs. On that journey, I understood the value of the professional transport system: they would have gone the back way.
Later, I told my husband how the trip through the lobby made me feel. He had no idea that I was feeling that way and he felt horrible about it. I knew he hadn’t intended to embarrass me but he apologized anyway. I think this experience was a tremendous learning opportunity for him. I know he will look at things a little differently given a similar situation in the future.
There is a big difference between emotional vulnerability and physical vulnerability. I can choose to let someone see my deepest feelings, share my most painful experiences and I can choose to stop the sharing at any time. In a similar way, I can choose to be physically vulnerable but would only do that with someone I love, trust and want to have that kind of intimacy with. However, when I am laying in a hospital bed and I am being touched and moved and wiped (I'm sorry, but that is reality) I can not imagine being able to let myself feel ok about that physical vulnerability. It is more like an assault than it is like the voluntary giving that you share with someone you love. Yes, it helps if the caregiver is the same sex. Yes, it helps if they are very sensitive to what is happening. Honestly, though, I have a very hard time imagining a situation in which it could ever feel empowering.
As a sick person, you can feel like you spend your life at the mercy of others…waiting for them to bring you food, medicine, oxygen. Being pushed in a wheelchair at a speed and route not determined by you. Being sick feels like being out of control.
Caregivers can make a big difference in how vulnerable someone in that position feels. Simply by being gentle and respectful with their body can make a huge difference. You can never underestimate the value of your kind words (or lack thereof). In small moments that are simply routine parts of life with illness, you have so much power to change the way a patient feels.
As a patient, you will have to find the balance between organizing your care in such a way that allows you to retain some control and accepting that there will be times in which you will have to hand the reins over to someone else. There is no easy solution for this problem. Vulnerability is one of the most emotionally painful parts of illness.