Marking Time in Limbo

We came for the last of the tests before Anthony’s surgery in a couple of weeks. I’m sure the colors for this waiting room were selected by a designer who felt the muted colors of “spring eggplant” and “brushed sage” would be soothing. The effect, however, is depressing when juxtaposed with the smell of old coffee from the “hospitality table,” the drone of an annoyingly perky morning TV anchor team gushing over something of no real significance and the spirit of the patients who have taken up residence in this room – the radiology waiting room. This is the room where hope springs eternal but you would never know it from the body language. It is the room where patients sit with a family member, an advocate, to wait with them for the news they do not want to hear but know is coming anyway.  Frail bodies lean, eyes slip shut as heads gently nod in vain attempts to recharge exhausted bodies; a young man tugs at his surgical face mask as he self medicates with his IPod. Clerical team members hustle around or chat on phones about lunch plans with their BFF on 4 North as if this little community of heart sick people is invisible, as if no one is in the waiting room, as if no one can hear the idle chatter about their impending day of normalcy.

“Mr. Geico. Geyco?” The nurse calling Anthony butchers his name and in doing so adds to his pain and sense of insignificance in this place. I see Anthony wince. “Greco,” he replies in a disgusted whisper. Gingerly he lifts his now dehydrated and very hungry body. He has been NPO (nothing by mouth) for about 14 hours; nothing; not even water has crossed his parched lips or soothed his rough cough.  (For a Crohn’s patient to be this long in an NPO state is pure hell and extremely risky for them but the vast majority of the medical community has not figured that out yet. Fortunately for us since we connected with our new medical team, this event in this particular department on this particular day seems to be the only unenlightened situation we have encountered.)

My mother’s heart cries as I watch him stand, my hand lightly held out in case he should stumble under the task at hand – simply standing upright with some measure of dignity. I watch as he struggles to deny this disease further access to his body and his life. He is determined. Anthony straightens his ever thinning pain filled body with all the dignity he can muster and accepts the first of three vials of a concoction he knows will make him very ill during the testing process; it will attack him a second time as his body cramps, fighting to release it later in the day.  The technician expects him to drink these vials in the waiting room in front of those who have awakened enough to participate as observers in Anthony’s world – in other words – with no privacy. He has consumed this concoction before for the tests that confirmed the presence of Osteomyelitis so he knows what to expect. Sometimes, knowing is worse than not knowing.  With tear filled eyes he turns his head to me and whispers, “When will the torture stop, Mom?”

I’ve had enough. While I know this is necessary for him and his doctors to be fully prepared for his surgery, I can no longer allow what dignity he has here in this room to be eroded any further. There has to be a better way.

I ask for a private space for him to do what he needs to do, a place he can choke down the crap he is supposed to drink,  a place with some measure of privacy to deal with the low blood sugar shakes and the dehydration and cramping inflicted by his NPO status. Why am I the only one who sees this? Surely they have a space for him.  Seeing I mean business, they mercifully take him away as the others watch in quiet amazement – a small victory won. I whisper, “I love you” as he walks away and then sit down to write, to tell others  . . . this is how you mark time in Limbo.