After a year and eight months in various hospital settings we’ve finally had a meeting here at South Davis to discuss plans for Brooke’s discharge to home. Things are looking promising: he’s been fully independent of the ventilator for over three weeks, and the diaphragm pacer is functioning well. His trach is capped for most of the day, routing his breathing in and out through the mouth and nose. Today, he was down to room air (21% oxygen) from higher levels of oxygen he was given after his attack of pneumonia. In general, the respiratory stuff is going really well. While the skin tear on his ischial still hasn’t fully healed (after nine months), we’re hopeful that with the new dressing it will, even though we recognize that that might delay homecoming plans. Just the same, we’re focused on the tentative date: August 17.
The meeting was held to explore what’s necessary for coming home: nursing needs, therapy needs, house modifications, transportation needs, ete. etc.—or more realistically, etc. etc. etc. etc. etc. There are dozens and dozens of things still to take care of, even though we thought it was all accomplished months ago. There’ll be yet another home visit to inspect the house, and yet other meetings to fine-tune details.
We are looking forward to this homecoming with a mixture of joy and excitement combined with considerable agitation and worry. After all, we have not lived in the same house together since Brooke’s accident, and have never lived with other people around all the time; there will be huge adjustments to be made in our daily lives. We’re told that nearly everyone who goes home after a spinal cord injury suffers from intense if temporary depression, because they are surrounded by the environment they knew so well before the accident, but cannot enjoy it in the same way. Everything reminds the spinal cord victim of the contrast between then and now.
Brooke says he is trying to prepare himself mentally and psychologically for this transition, but even now—as far in advance as five weeks—some depression seeps into his mental world. What will it be like to be home again, surrounded by objects, memories, and yet be almost completely paralyzed and incapable of living in the way he had before? He’ll still need periodic suctioning, straight-cathing six times a day, turning every two hours all day and all night, not to mention feeding and bathing. How will we adjust the house so that Brooke can work in it? There are so many unknowns here that one is tempted to fill in a future blank with projections, often of a disturbing sort. Brooke thinks that the next few months after homecoming will be the greatest challenge of this entire spinal cord odyssey, greater in a way than the ICU, the pneumonias, vent weaning, surgeries, infections, and the rest of it. After all, those have been challenges of a largely physical nature. Now, however, everything bears down emotionally. What can it be like to be outside this one room, where I’ve been for a year and three months? The room has come to signify all sorts of things, among them, oddly enough, safety.
Peggy says that the anxiety preceding her hernia surgery was worse than the aftermath of the surgery itself. But this is different, Brooke says—it ain’t going to be easy. It’s going to take all the strength and compassion we and also our friends can muster up to help us go through this transition. For me, Brooke, the bottom line is simple: I have to learn to live with helplessness. There’s a lot of fear involved here, and depression creeping up as well. But I also have to remember the ways in which I’m not helpless. I can still think. I can still teach. I can still read, if it it’s by means of books-on-tape or having friends read to me. And I need to have compassion for people around us, friends and caregivers, because this anxiety will find them too—how can they help me, when it seems there’s so little to be done? How can they ease the neurogenic pain I still have so much of the time? How can they disguise their dismay when the bed is wet again or their fright when I can’t breathe and I need still more suctioning? How hard is it for them to see me struggle? I think they will have some compassion for me, but I think I’m the one who needs most to achieve compassion for others, given what being around me will impose on them. Not that they don’t do it willingly; I know that it is utterly genuinely meant, but it’s still hard.
Just the same, I’m still looking forward to coming home.