A friend used this term to describe those who are living in hospitals with their loved ones. Not short stays of days or even weeks, but months with no idea of when it will be over. We got introduced to this quiet society last year during Megan’s illness. I don’t wish it on anyone.
Your world shrinks to not much more than one room. Your outings are trips to another floor for tests or the occasional brief field trip outside for supplies. You learn you can sleep in a fish bowl, and eat and shower communally. The world all but stops. You acutely mourn your life before and all of its normal pleasures, like sleeping in your own bed and eating dinner all together as a family. You feel guilty for your jealousy of the hospital staff who get to leave every day to go home to their normal lives, even as you are beyond grateful for everything they do for you and your loved one. You become hyper-aware of just who from the outside remembers that you exist and who does not, who is sensitive to your ordeal versus those few jerks who act like this must be some exaggerated ploy for attention. You deeply learn what really matters, when all that matters is what’s happening to a single human being now at the center of the universe.
The crappy reality is that this is happening right now. Right now, as we go about our normal routines, spouses are holding the hand of the love of their lives at their bedsides. A few miles away, parents are suspended in a 10×10 sterile universe, desperately hoping against hope for a miracle for their child. Every day it’s happening, thousands of times, right here in our home towns. It’s a by-product of the human condition and modern medicine. But there is something we can do.
Chances are we will all eventually know someone living invisibly. We can let them know that they’re not invisible, that we remember them and what they’re going through. We can text…regularly. We can send a card and a small stash of snacks. We can visit. You don’t have to stay long, and don’t worry about not knowing what to say. Just say “I don’t know what to say.” Offer specific help versus asking what you can do. It’s easier to accept a specific offer than to ask for help. And if you’re so moved, you can donate time or money to an organization which helps very sick kids and their families; there are plenty of them. My friend Angela from church has started her own non-profit, Gifts from Heaven, to bring a moment of joy to kids with serious illness. If short on time, we can send someone like Angela $10 or $25 a month, and let them do the work for us. And especially, we can pray. Pray for those living in fear, their lives disrupted and on hold. And pray that we don’t ever have to learn what it’s like to live invisibly.
“Sometimes the heart sees what is invisible to the eye.” –H. Jackson Brown, Jr.