According to the NEJM article, Mlle. Dinoire “the patient is very satisfied with the results of the transplant”. She is able to eat, drink, and speak normally; it is said that, with make-up, her surgical scars are no longer evident. The results do appear to be remarkable:

The picture on the left is NOT a post-transplant image; it’s from 2001, four years before the face transplant, when Mlle. Dinoire was 34 years old. The middle picture is from November, 2006, one year post-transplant. The right picture is of Mlle. Dinoire in June, 2007, eighteen months post-transplant, showing her natural face, without make-up.

The post-surgical journey has been difficult. Mlle. Dinoire has suffered several bouts of rejection and one of kidney failure. She has battled infections; she must, of course, take immune-suppresents for the rest of her life. The return of functional abilities has exceeded expectations, though. This chart (left), from the New England Journal of Medicine, tracks the changes throughout the first six months; her abilities now far exceed those noted here.

Mlle. Dinoire’s case is controversial for many reasons. One of her doctors initially reported that she had attempted suicide; Mlle. Dinoire herself confirmed this in an interview with a London newspaper. Her injuries occurred when her dog was trying to rouse her from unconsciousness following the drug overdose. (Her donor did commit suicide, adding another layer of emotional complexity to the case.)

Mlle. Dinoire, a single mother, has a history of depression, and had been unemployed for a year prior to the incident. Criticism has been leveled at her doctors, who, some feel, may have chosen a particularly vulnerable patient for this historic operation.

Long-term, the physical problems alone may prove overwhelming. Notes The Washington Post:

Maria Siemionow, director of plastic surgery research and training at the Cleveland Clinic, which has been planning to do face transplants, expressed concern about Dinoire’s “unexpectedly aggressive immune response.” Scientists need better ways to prevent rejection of large, complex tissues such as faces, she said.

Siemionow, along with others, also expresses concern about the psychological implications; no psychological study has been published in connection with Mlle. Dinoire’s treatment.

British filmmaker Michael Hughes has made a documentary of the surgery; Mlle. Dinoire allegedly signed a deal for movie rights to her story earlier this year, netting (according to one account) over $400,000 (USD). The Hughes documentary is reviewed here (in French).

Whether Mlle. Dinoire’s pioneering venture will prove worthwhile over time remains to be seen. The potential scope of this experiment is breathtaking, yet it cannot help but recall the innocence and irony of Miranda’s words in Shakespeare’s Tempest:

O brave new world
That has such people in’t!

Related:

The Tin Noses Shop

The Origins of Plastic Surgery

New posts won’t appear for another week or so while we all re-group and see how things go.

Thank you, everyone, for your kind thoughts and comments.

Francis Derwent Wood, a sculptor who enlisted in the Royal Army Medical Corps, pioneered the use of thin metal as facial prostheses, instead of the cumbersome rubber previously used. While doing a stint as an orderly at London’s 3rd General Hospital, Wood began the work that developed into the “Masks for Facial Disfigurement Department”. The soldiers who frequented the department dubbed it the “Tin Noses Shop”; Wood’s artistic and technical talents allowed them to continue their post-war lives with realistic, if immobile, facial prostheses.

Inspired by Wood’s work, another sculptor, Anna Coleman Watts, a well-to-do Bryn Mawr, Pennsylvania native who had married an American-Red-Cross-connected physician, opened her own “Studio for Portrait Masks” in Paris where she and her assistants labored to make ‘life-like’ masks of paper-thin galvanized copper.

In Ladd’s studio, which was credited with better artistic results [than was Wood's], a single mask required a month of close attention. Once the patient was wholly healed from both the original injury and the restorative operations, plaster casts were taken of his face, in itself a suffocating ordeal, from which clay or plasticine squeezes were made.

Ladd’s masks were laid over the face and held in place with earpieces attached to eyeglasses; like Wood’s, they were tinted to match the recipient’s skin, and carefully painted to resemble pre-injury photographs.

The Parisian studio produced only 185 masks in the year or so that it was operational. Though that figure seems almost inconsequential in comparison to 20,000 “facial casualties” the magazine reports, the difference they made to the men who owned them must have been significant far beyond mere numbers.

In a companion piece, Rivaling Nature, the author notes that

. . . wearers of prosthetic faces confront many of the same drawbacks today as in World War I. Breath moisture creates problems, steaming up glasses and interfering with adhesives; and even the most sophisticated prosthesis does not move.

Animation is only part of the story, though. While prostheses in general solve a range of problems, they also pose a host of others. As both articles indicate, the problems involved in producing realistic facial prostheses have not changed much since World War I.

Even modern materials like the silicone used for contemporary limb comesis and the fantastic robotics that make larger prosthetics function well are not subtle enough to allow realistic reproduction of facial animation, or sophisticated enough to resolve these other issues. Says one researcher:

“My patients would probably try it, and then never wear it,” says Donaldson of a full-face robotic mask. “What if it breaks? You’re back to square one.” Unless a patient is missing actual facial parts, Donaldson advocates confronting the world with the face that remains. “It’s society that should change,” she says. “It’s the public that needs to be educated.”

Plus ça change, plus c’est la même chose; it’s still, it seems, a long way to Tipperary.

I have a quibble with medGadget’s calling this story “[A] sad case” as well as with most of the media coverage, which has taken a decidedly ghoulish approach to publicizing it (“Is Oscar the Cat a Furry Grim Reaper?”), even when the actual articles prove to be rather less inflammatory. Death is sad, but as the original NEJM article reports

[Oscar's] mere presence at the bedside is viewed by physicians and nursing home staff as an almost absolute indicator of impending death, allowing staff members to adequately notify families. Oscar has also provided companionship to those who would otherwise have died alone.

There’s nothing sad about being being offered the gift of being with a loved one in his or her final moments, and nothing at all wrong with having a soft, living creature to quietly share those moments when we are all most alone.

The idea that an animal might be able to ‘predict’ the death of another is not necessarily outlandish, says Daniel Mills, a veterinary specialist at Lincoln University [UK]:

“Animals are particularly sensitive to a whole range of cues of which we are not always aware and can pick up on minute chemical changes,” he explains. “For example, you can train a dog to predict an epilepsy fit in a patient before they even sense it themselves, or even detect cancer, so it seems reasonable to suppose you might be able to train a cat to detect that a person was terminally ill, particularly as they have such a good sense of smell.”

We’ve seen a similar situation in our own GearAbility home. When Whitters, one of our cats, was elderly and fading in her last few days of life, another of our little herd — a cat who had always disliked Whitters enormously — curled up next to her during her final hours. It was an arrangement that clearly was good for both of them, though we don’t claim to understand it any better than those who attempt to explain Oscar’s motivation.

After all, says Jack McCullough, relative of two patients who died at the home with Oscar at their sides,

“What could be more peaceful than a purring cat? And what sound more beautiful to fill one’s ears when leaving life? He brought a special serenity to the room.” (Quoted in the Daily Mail)

Daniel Mills quote also from The Daily Mail (UK)

Thanks to medGadget

In October, 2004, a 27-year-old man named Jonathan Magbie died in a Washington, D.C. jail while serving a ten day sentence for marijuana possession. From NORML’s site:

Magbie was sentenced to spend ten days in jail on September 20, 2004 after pleading guilty to one charge of marijuana possession. Though prosecutors had recommended probation, the judge in the case ordered Magbie to serve jail time – noting that the defendant had told pre-sentence investigators that he would continue using marijuana because it made him feel better.

No one could reasonable argue that death is an appropriate sentence for possessing marijuana for personal use. Whether or not the ten-day sentence itself was appropriate is another argument altogether.

There’s another, entirely different, message to take away from this ridiculous, tragic story. If you have any reason to believe that your medical needs may be compromised in a bureaucratic setting — due to stupidity, ignorance, cupidity, insensitivity, callousness or for any other reason — find an advocate who is able to command the attention of the bureaucrats or administrators in question, and who is able to do so immediately.

There’s no way of knowing exactly what Jonathan Magbie was thinking as he went off to jail. I can’t tell if he was articulate or not, or if he understood the seriousness of his situation. It’s probably reasonable to assume that he had no idea that he had only ten more days to live when he went to serve what may have seemed, in the larger scheme of things, a fairly insignificant term for doing something he had every intention of continuing to do once freed. Perhaps he felt that going to jail was just a cost of using marijuana.

If so, he was wrong. In their zeal to treat Magbie like everyone else, his jailers (and the court system) killed him. For whatever reason, Magbie was unable to demand or acquire the medical assistance that would have kept him alive while he served his sentence. A advocate might have seen this picture a bit more clearly than Magbie may have. An advocate may have had the ability to demand that Magbie’s medical needs be evaluated and that an adequate plan for meeting them was in place before he began serving his sentence.

Yes, the system should have worked better. Yes, Magbie’s medical needs should have been evaluated and considered before he ever rolled through the jailhouse doors. Yes, he should not have needed another voice. But Magbie is dead because none of these things happened.

It’s not politically correct to suggest that Magbie, or any other person with quadriplegia or another complex medical situation, might need someone else to speak for him. But ‘politically correct’ is not the point when life or death is an issue. ‘Reality’ is the point.

If you are vulnerable, if your fate is tied to others who may not understand the parameters of your existence, others who may not hear you simply because you are ‘disabled’, find yourself the loudest, most competent spokesperson you can. Make sure that someone with perceived power can speak for you, because, in real life, the disenfranchised, the ‘different’, the marginalized, are often ignored.

Find that advocate if you’re going into jail, into a rehab hospital, into assisted living, or a nursing home. Treasure that person, and call upon him or her if there’s even a small chance that your situation is not being addressed. Do it first, and do it fast. You may not have time to sort it all out later.

It’s true that, at times, Dad uses the wrong word; he says the odd phrase that makes sense to him, but not to the person he’s talking to. It’s nothing, I tell myself. Everyone experiences these little vagaries; all it takes is one bad night’s sleep, and who can think clearly or speak as precisely as on the days when we’re rested and eager to take on the world?

But all of these things, of course, were, and are, signs of Dad’s dementia. The illnesses that are physically overwhelming my dad’s body are physically overwhelming his mind, as well. In an hour’s conversation on any given day, everything can seem as ordinary as possible. The discussion moves along, lively, engaging, flowing just the way social interchanges generally go, but at the end, Dad suddenly asks a question. “How did we get here?” he says. Or he comments, “I thought we were at the old house, but we’re not, are we?”

It’s not always obvious that other things have slipped away, and the newly-evolving deficits can be a surprise, over and over again. It’s a shock, for example, to see that ordered thinking has become a problem, that when three things need to be done, one after another, Dad’s ability to figure out which comes first is gone.

It’s difficult to accept the idea that judgment is fading. It’s hard to understand that Dad drives his wheelchair into the wall, day after day, because his ability to assess what is happening has gone, along with the ability to figure out that the chair must be stopped before it hits the wall.

When it’s easy to discuss politics or world affairs, it’s startling to realize that rational analysis, applied to more practical matters, has become difficult for him. That falls occur because Dad’s mind cannot simultaneously contain the idea of “slippery fluid” at the same time as it holds the idea “grab onto bars”.

It’s automatic to want to suggest solutions; to ask why something isn’t done another way; to show why what Dad’s thinking or saying or doing doesn’t exactly work. But it serves no purpose; nothing anyone says or suggests can alter the changes in his brain.

It’s a struggle to fight the desire to tap into that vast intelligence that’s still so evident; to fight the belief that somehow, somewhere, my dad can access, if only he tries hard enough, the cells he needs to see his world fully. But he can’t, and he won’t ever be able to again.

For a loving visitor, there’s a delicate balance to maintain. Dad is fundamentally safe — or as safe as possible — in a nursing home with attentive staff. Misperceptions that involve feelings, and those that involve potential harm, do need to be addressed, since sometimes letting them slide is the only thing he will remember. Everything, else, though, is better left unmentioned.

Dad’s obvious intelligence does not cancel, and cannot displace, the equally real dementia. Nourishing and cultivating the one, while remaining ever-mindful of the other, sometimes feels like a delicate balancing act on a tightrope without a net.

Last month, my spouse and I lost, to death, a cat we’d rescued only a year and a half earlier. Suzume had been only a day or two from death when our daughter saw her in our yard; she was starving and almost unable to walk. She weighed six pounds then; she was skeletal, her skin like leather in all the many places where fur was missing.

Within a few months she was up to thirteen pounds, a different cat entirely; the sweetest and most purely loving one we have ever owned. For nearly a year she did well, and then began losing weight: It was clear that she was far older than the vet had originally thought. Cared-for, well-fed, and well-loved, she was dying of old age.

We had lost nearly one well-loved cat a year for the previous four years, an experience that was devastating and demoralizing. It had been enough. Even before we took in Suzume, we had decided that Fluffy Cat, the fifteen-year-old survivor of our long-time herd of felines, would be our last animal for the foreseeable future. Suzume was the exception to the rule.

Losing Suzume was hard on us, but it was even harder on Fluffy Cat. She looked for Suzume everywhere, wandering listlessly through the house. In the previous few months, she had begun losing weight, too, and becoming more frail, and now those changes seemed to be accelerating.

Our house was emptier; our home tinged with the sorrow we’d just experienced and the one we knew we were facing. It was difficult to return to the house each day after visiting my dad in his nursing home. Suzume was so palpably gone; Fluffy Cat so clearly in mourning.

Each afternoon, I came back to the house more and more aware of my dad’s own incontrovertible decline. Though my visits to my dad require that I stay focused on this moment, this interaction, this visit, the shadow of what is to come was always inescapable. Losing Suzume and facing Fluffy Cat’s growing fragility made that inevitability that much more real.

A week after Suzume died, I went to a pet supply store to pick up ‘eldercat’ food for Fluffy Cat, and foolishly walked down the wrong side of the store. In the section reserved for the local shelter was a terribly depressed seven-year-old Maine Coon mix who’d just been given up after several placements that hadn’t worked out. Next to her was a huge, loving, but not at all glamorous 2 1/2 year old male who had been languishing at the shelter for five weeks with nary a flicker of interest.

Three days later, we’d brought both of them home. Integrating them into the household has been a ludicrous amount of work. We’ve had to be endlessly patient while the cats work things out amongst themselves, all the while affecting and directing their less-desirable behaviors behind the scenes.

Though they are already affectionate and responsive to us, and even to each other, adapting to these changes is frightening for our rescued cats. They will need months of constant reassurance and attention to be sure that this new place they’ve landed is a safe one.

The house is once again dominated by the needs of cats, and my days are still dominated by my dad’s needs. Was it madness to bring the cats into our home? After all, wasn’t I stretched thin enough already? As with foster children, displaced cats regress; they have problems with social interactions; toilet training (or, in this case, litter training) fails. I do insane amounts of laundry; I’m stressed. But, even so, the atmosphere is our home is completely different now; Alex and Emma bound up and down stairs and beg for cuddles while they tussle and figure out their new world.

Over time, Alex and Emma will adapt as if they’ve always lived here. Our Fluffy Cat has a friend to ease the isolation of her final days. And I simply can’t dwell any longer on what’s been lost and what will be lost; these new creatures won’t allow it. Alex and Emma have a different agenda — they are thriving; they are engaging; they are endearing, and they will not be ignored.

Someday, they, too will die, and the pain of losing them will be terrible. But not now. Now they are part of the daily conspiracy to mitigate the awful truths of life and death. Maybe that’s the real madness: we love, we care, we nurture because those are the only tools we have to fight the pain we cannot escape.

We understand the therapeutic importance of stretching his abilities, but Dad doesn’t. Not one bit of it. When activities are suggested, said one person, he refuses almost arrogantly, as if they are beneath him. She wasn’t being disparaging; she was reporting an observation, not labeling my dad.

My dad has his moments, but that kind of arrogance isn’t really part of his personality. As a result, her comment made me think a lot more seriously about what might be going on with him.

“Seriously” turned out to be a clue.

There are many more women than men at my dad’s nursing home. Most of things they’re doing now are similar to what many of them did before they came to the nursing home. As part of the horticultural therapy program, the residents spend part of every Friday making the floral arrangements that are displayed during the week at the home.

There are regular baking activities, and decorative craft activities themed according to various holidays. There is an art therapy program that involves fabric, ceramics and painting. For the women who participate, these are familiar, and desirable, activities. They are enjoyable, even fun.

Dad never did any of these things, nor anything like them. For him, it’s not that ‘fun’ isn’t the point — it’s not even part of the vernacular. His working life was driven by the need to make a living. His approach to his hobbies was driven by the same traits that made him successful at work — competition, study, goal-orientation. The casual pursuit of interesting and satisfying activities for their own sake wasn’t really a consideration, either when he worked or in retirement.

For my dad, life has been a serious business.

Now he’s reached the point when his capacities, both physical and mental, are diminishing. He’s arrived here without habits of practice and mind that would allow him to be receptive to expanding his world in ways he hasn’t considered before.

He does not want to paint because he has never done it before, and because he doesn’t see any point to painting. He isn’t interested in cooking because it has always been a nuisance, something to get out of the way. He can’t use a darkroom, so, in his mind, there is no point to photography — and, in any case, he’s done that already. He sees no reason to do it anymore.

He does go to the music events at his home; he watches the Discovery Channel, the History Channel and Animal Planet. He listens to his extensive collection of CDs, and he reads. For the most part, though, he moves less and less, and he uses, less and less, his all-important hands — the part of his body least affected by his illnesses.

The less he uses his hands, the more rapidly he loses coordination and the less his mind is stimulated. As his mind is less stimulated, his hands work more poorly. And so it goes.

The challenge for those of us who care for my dad is huge. It’s a challenge that I suspect will assume increasing importance in the future for those who care for other men, and perhaps professional women, whose lives, like my dad’s, never encompassed the casual forms of recreation that help to keep bodies and minds in sync when the pressures of professional lives are no longer omnipresent.

It’s a daunting challenge, and one assisted living and nursing homes may find increasingly pressing over the next decade as their populations change.

Holding hands from wendydqm on flickr

Hand-Tied roses from imedagoze on flickr

Sketched hand from boxed13 on flickr

Hand photo from richard sweeney on flickr

Escher hands from Fondazione San Raffaele del Monte Tabor

Waiting hands from ivan on flickr