It’s been almost a month since you’ve heard from us. A couple of people have called, a few have written, and many have asked whether something is wrong. Nothing is wrong. In fact, things are going along pretty well. Brooke goes to physical therapy of one sort or another about five days a week and is growing stronger and stronger, although once again it's like watching grass grow: you can't see strength growing on a daily basis, and in any case strength isn’t like doing biceps curls or benchpressing 300 pounds, it’s more a matter of being able to keep your trunk upright, even twist it from side to side, but just the same Brooke’s strength is growing. A couple of days ago at physical therapy at Neuroworx he used the NuStep machine for the first time, with his hands fastened to the arm bars but his legs powering the pedals on his own. Then at occupational therapy at the University he used an iPad for the first time, working to swipe his hand across the screen so that he could read a New York Times article from start to finish. These both represent more of the ongoing physical development that’s been happening at an increased rate since he’s been home and thus able to get much much more in the way of therapy, though the increased rate is more or less like faster-growing grass—it grows faster, but you still can’t see it happening.
But of course, this progress is coupled with other things, and whether or not they represent progress is a question to consider.
Brooke still has many moments in which, he says, he can't really fully absorb what has happened to him. We called this cognitive dissonance earlier. But could it be a somewhat different process, or associated with a different process? We had dinner the other night at our house with a very interesting new acquaintance, Elizabeth Fetter, who injured herself when she was 17, something like 45 years ago, coming down in the dark from climbing a 60-foot Douglas fir: she stepped on a dead branch and has been paraplegic since. (We mention her name because her essay about delayed grieving is one of the 45 first-person stories that appear in From There to Here, Stories of Adjustment to Spinal Cord Injury edited by Gary Karp and Staley Klein—we haven’t seen the book yet but have read her essay.) We talked about grief, and the way she, by her own account, had postponed real grieving for many years. She said she thought this was unfortunate, unfortunate not to have done one’s grieving earlier but to have spent many years evading it with overanalysis, controllingness, and drivenness, all of which contributed to amazing success but at an emotional price.
Brooke responded to Elizabeth that the deepest emotion he has felt was more like mourning (as you may remember from his earlier remarks on Freud and melancholia), mourning for a huge loss. Is there a difference between grieving and mourning? It may not seem so, but he says it still feels that way—mourning has a long-term, nineteenth-century European resonance about it though grieving is a contemporary clinical term. Peggy observes that perhaps part of the difference is that one expects to recover from grief—provided it’s not what clinicians call ‘complicated grief,’ which typically occurs where there were dysfunctional relationships before the loss occurred—but mourning is something that can continue, perhaps at lower ebb, for a lifetime. Right now, Brooke and I are sitting inside writing this account while we can see one of our especially robust caregivers outside in the bright sunlight, doing what Brooke would have done had he not had his accident, shoveling rich black topsoil into the garden.
Oddly, whether it—mourning or grief or whatever it is--is more acute for Brooke than it has been over the last two and a half years or less so is curiously hard to say. Why less acute? Well, it’s been two and a half years, a huge amount of time, and one adapts to stuff, even immense changes. On the other hand, why more acute?—in a way, it’s more possible to recognize and express one’s deep internal mourning for the loss of the person you used to be. This may seem odd to other people, who are perhaps growing impatient with a continued emphasis on suffering, both physical and psychological, but in certain ways things seem at least as hard, or harder now that they have been, as one struggles and struggles to accommodate to such drastic change. It’s not just grief, which one might expect to abate after time, but deep, lasting mourning for something you don’t expect ever to be able to do again.
In any case, Brooke says, the feeling of strangeness still surfaces at times with overwhelming power. It's like waking up from a dream to realize that you’ve had a terrible accident—even now, when you wake up or even at unexpected times in the day, for a moment you can't believe that it's happened, that it’s not reversible, and then you adjust again to reality: pain much of the time, limitation, spasms, frustration, everything that goes with dependence. This still happens over and over again, even two and a half years after the accident, and probably always will keep happening. This is in spite of the fact that things are going really well, all things considered, and when I feel good, Brooke says,—after a hard workout, for example—I feel really good, psychologically and physically. That’s part of why the swings from awful to great and back again are so weird, and why grief and mourning are so mixed in with optimism and growth.
In the good moments, we’ve been working on the Get-Brooke-Into-His-Garden project we (naively) announced two years ago. There was to be a contest, of sorts—the idea was to figure out how it would be possible to get Brooke in his massive wheelchair into the lower part of our little garden. Here’s what we said, two years and one month ago:
“Get Brooke Into His Garden” Design Contest
Even though it may be some time before Brooke is able to come home—hard to estimate at the moment—when he does we’ll face a dilemma: he loves the garden next to our house, but won’t be able to get to it. After all, the deck is three or four feet above the garden, and at the moment he couldn't even get to that. Then to get to the garden itself you have to go down a set of stone steps: it won’t be possible to navigate these in a several-hundred-pound power wheelchair, and even if you could get down the steps you couldn’t drive around on the grass. So here’s the challenge: design a way for Brooke in his chair to get down into the lower part of the garden, keeping in mind the various constraints: the grade for a path can’t be greater than a certain number of inches per feet, there has to be stable paving of some sort, there have to be spaces for eating and entertaining, there has to be room to relax and smell the roses, and of course that means there have to be roses somewhere. And there’ll have to be other flowers and plants as well. Maybe even whatever attracts birds and keeps the quail we now have still coming. So are you game to rise to this challenge? It’s a contest…
Of course, this is a contest without a prize—except the pleasure of seeing one’s design or part of it come into being. And there will be reverse prizes for all contestants—not only might you see some features of your design incorporated in the final plan, but you get to bring something instead of taking winnings home: we’d love to have you come and bring a plant or two to plant together with Brooke: he’ll be the gardener, you be the hands that put the plant in the ground. So it won’t be just Brooke’s garden, but everybody’s, and of course it will be wonderful to have you all sit in it eventually and enjoy it with him.
So we’ve solved the problem of descending into an area 37 inches lower than ground level of the house; ADA requires a slope no steeper than one foot per inch of drop, so now we have a long, curving walkway with an 8.3% grade (more or less) that goes from house level to the bottom of the garden that Brooke can motor up and down. There’s also a deck that he can motor out onto from the bedroom area, higher than the old one and so closer to the birds and the trees. Almost everybody wins in this contest—it was really wonderful to have all those suggestions, and the best part is that our eclectic solutions have incorporated virtually all of the suggestions people made.
At the moment, though, this new garden has everything except green—there’s just dirt everywhere, nice rich topsoil ready to be planted but at the moment bare. If you remember, though, it was a contest with reverse prizes—the prizes involve getting to bring something to grow. Come and see what’s going on—and if you like, bring a plant we can put in a pot or stick into the ground, maybe a little low-growing shrub or a vegetable seedling or a small flowering perennial that will remind us of you indefinitely and let us thank you for helping to get Brooke into his garden.
Even two years and a month later than we ever anticipated, it is good to see this contest coming to fruition and the prospect that this garden will really grow.