four years ago, as a junior at middlebury college, corey was diagnosed with amyotrophic lateral sclerosis (lou gehrig’s disease). he had started to notice things. he had trouble moving well. his speech was sometimes slurred. it was harder to write and type than it should be. corey is tall and athletic, and even now, four years into a crippling disease, it’s easy to see that he has always been someone very much in control of his own physical being. you’d think that’d make things harder, but corey doesn’t complain. he’s not maudlin, or overly sentimental, but he’s not in denial, either. corey knows there is no cure for ALS. the average lifespan for someone diagnosed with ALS is two to five years. corey is on year number four. the disease is progressing slowly in him, which is good. still, he’s knows he’s been given a death sentence.

sometimes you hear people with terminal illnesses say that they’re just “living every moment for the best” and it sounds like they’re trying to convince themselves of something. corey says things along those lines, but i don’t doubt him for a second. when you’re sick and there’s nothing you can do about it, well. . . that’s one thing. when you’re sick and there’s nothing anybody around you can do about it, either, that’s another thing entirely. it can put a lot of pressure on you. i spent the day with corey, his mother and sister in piedmont this past august, and it was a really remarkable thing to see. they are not people scrambling to put a positive face on a terrible situation. they are positive people in the middle of a terrible situation, determined to enjoy their lives, appreciate each other and make sure the days count for something. they know there will come a time when corey can’t walk for himself, when he can’t talk, when he won’t even be able to breathe on his own. until then, life is good.

corey occasionally uses a motorized wheelchair but he can still walk with a cane. it’s a bit shaky and sometimes he says he falls. he says he’s good at falling. the family had to install an automatic chair to get him up and down the stairs. he works part time at his old high school, as an assistant tennis coach. he smiles a lot. as a cynical person, usually i’m annoyed with people who smile a lot, but corey’s got a way of selling it. oh, and his cane? it’s made out of a petrified bull’s penis, a gift from friends who know that he’s not about to lose his sense of humor.

on the way back to the airport at the end of the day, corey tells me about his involvement in various ALS benefits. he tells me how he gets to meet famous people now. or, silicon-valley famous people, at least. he starts to tear up a bit. he says that’s one side effect of the ALS. it can make it difficult to regulate your emotions. sometimes he finds things riotously funny for no reason and can’t stop laughing. other times he says he cries easily with little provocation, but the way he says it makes it pretty clear that he’s not crying for himself.

my thanks to the immeasurably wonderful pam fogg for the assignment.

this month sees the magazine cover debut of my adorable and chubby niece, willamina. i got an assignment to photograph harvey karp, a pediatrician and author of the “happiest baby” series of books and DVDs. it’s all about the five S’s, people. (swaddling, side/stomach positioning, shushing, swinging and sucking) harvey teaches parents how to calm crying babies, which in turn calms frazzled parents.

we wanted a baby for the shoot, but harvey’s own son was 27 years old. that wasn’t exactly the right visual, obviously. luckily having recently become an uncle i was able to provide a baby, and spend some quality time with my niece as well. my sister-in-law (see below) got a free instructional DVD, too.

many years ago when i was working for greg heisler i remember seeing a time magazine cover up on the wall of the studio. he had photographed his own daughter for it and that always struck me as a really great thing. this isn’t quite the same, but it’s a start. hopefully there will be many more in the future.

below are the layouts used in the magazine (i tease my brother that willa looks like kuato from total recall in that cover picture, all scrunched up and wrinkled!) as a bonus there’s willa with her mother in a test shot, and with her charming and talented uncle, as well (thanks to paul). as an extra special bonus, a short video of corporal bennett singing a cowboy lullaby about pooping. you’re welcome, internet.

this week i’m headed off to orlando to the cardiology 2010 conference. i’ll be speaking and signing books there saturday night (2.13.10) at the disney contemporary resort. if you’re in the neighborhood please stop by and say hello!

as part of my presentation to the conference i made this short film. this conference is mostly a medical one, with 26 of us (out of 900 attendees) being classified as “miscellaneous.” a long while ago i met a CHD researcher who told me that one thing doctors and scientists often miss out on is information on the emotional lives of their patients. given that, i wanted to show how some of the subjects from the book are doing now, as young adults out in the world. they’re dealing with the same things we all have to contend with – school, the future, family, love, fear. and they’re all a whole lot more interesting than listening to me speak!

my recommendation: watch it HERE, full screen, in HD for best results.

ron bloom married sandy, his high school sweetheart, and made his fortune in real estate. in 1988 sandy died after a long battle with cancer. some time later ron met lois, and they married. lois had also lost close family to cancer, and now they’ve both given a substantial philanthropic endowment to cancer research at cedars-sinai medical center. for people in a position to give in such considerable ways, funding research is a wonderful thing. thanks, ron.

most of us feel broken in some way. often this feeling is quiet and unseen, but even if we don’t admit it, even if it’s invisible, even if we’re totally wrong, in many of us there’s something that feels a bit incomplete. i don’t think this is bad. i think it builds character. it makes us strive for the things we need, even if we don’t really know what we need. it makes us look for the things that are broken in others and it brings us the capacity for compassion and empathy.

most of the time people feel incomplete in ways that would never occur to anyone but themselves, ways that would remain invisible (i.e., you feel unloved, you feel awkward, you feel clumsy). but sometimes there are very real physical manifestations. when something feels missing because it actually is missing, when it is plain to the world that something is missing, it can be a lot harder. most of us have only our own neuroses to contend with. when you have to contend with the questions and stares and reactions of strangers, that’s another thing entirely.

stefan knauss is a prosthetist. in the simplest terms he helps people to feel less broken, less incomplete. he builds artificial limbs; legs, arms, hands, feet, fingers, ears and eyes with such a degree of precision and beauty and accuracy that when i looked through his portfolio half the time i pegged the real leg for the fake one. stefan brings artfulness and dignity to us when we need it most. his work is equal parts function, art and compassion.

he made his first mechanical hand for a high school science fair twenty five years ago. it’s the one on the left (obviously) in the first picture above. to me that picture represents twenty five years of single minded effort, of striving to complete what feels incomplete.

while i was at stefan’s i met leslie. leslie lost her left leg to cancer eight years ago. some time later stefan made her a new one. after years of wearing long pants and boots to cover up the obvious prosethetic she used to have, leslie now wears skirts and sandals frequently. a casual observer would never know. even though the fact of being able to wear skirts and sandals might seem trivial, the result is huge. sometimes it’s a luxury to be able to keep to ourselves the things that feel broken.

when i arrived to photograph jan, she and her husband, rick, were taking care of their grandson, noah. rick was making tacos for the family, cooking expertly in a well-worn, well-loved cast iron skillet. it was a simple act, a simple day, but even talking to them for a few minutes i could tell that those simple things were not casually overlooked in this house. nine years ago jan was diagnosed with stage IV lung cancer. her chance of survival was plainly stated by her doctors: zero.  by the time they had discovered it the cancer had aggressively spread to her brain and liver.

surgery removed the tumors from her brain, but even after three rounds of chemotherapy the tumors in her lungs and liver remained. she was 47 years old. jan was being treated at cedars-sinai hospital (the hospital where i was born, coincidentally), and her doctors managed to get her in to the phase II clinical trial of a drug called iressa.

ultimately the drug was not approved for use in the US by the FDA. the trials failed to show effectiveness often enough, as only about 10% of patients responded to it. for jan lesser, though, it was a miracle pill. no more chemo. no more nausea. no more headaches, or weakness. just one pill a day. she said she felt better almost immediately. she went from having weeks or months to live, to being totally cancer free now for almost nine years. she still takes iressa, as it’s approved in the US only for patients on whom it’s already shown a positive result.

today jan feels good. rick feels good. noah has a grandmother. jan was one of only 27 people in that stage of the trial. she’s alive and well today because of a little luck mixed with a whole lot of research and science. sometimes no matter how many terrible things happen to us we still manage to find ourselves in the right place at the right time, despite it all.

twenty years ago anissa ayala was a 16 year old girl who had just found that she had developed a very aggressive form of leukemia. at the time the national donor registry had very few names and with no matches on the donor list, and no matches in the family, the ayalas made an unusual decision. mary and abe decided to have another child, hoping that that child would somehow be a match for anissa. it was a longshot, to be sure, the odds of a match were less than 25%.

in 1990 marissa ayala was born and was a perfect donor. the bone marrow transplant was a success and anissa remains cancer free to this day. now 19, marissa lives with her parents while going to school and anissa, now 37, works for the leukemia and lymphoma society.

when marissa was born the ayala’s decision to have a new child to save their daughter was met with outrage as much as anything else. there were threats made, and accusations of farming babies for spare parts. still, the family’s love for marissa is clear, and clearly not just related to saving anissa’s life.

many people spend a great deal of time struggling with indecision, wishing that their lives somehow had a predetermined direction or some built-in meaning. we try to find this through our work, through our friends, through love and desire, through religion. imagine if you were marissa ayala, and you actually were born for a very specific reason. would that make life easier or harder? what if you knew that the thing you were born to do had already been done, that it had, in fact, been done before you could even remember. would that change things? would you struggle with indirection and indecision like the rest of us who only hope that we have a purpose? we go through our lives manufacturing our own reasons for living, for getting up in the morning, for getting out of bed, for going to work and getting things done. then every once in a while there are people for whom the reasons truly are built-in to who and why they are.

my thanks to florence nash at people magazine for the assignment, and of course, to cpl. bennett for his gracious assistance.

here’s the photo they used, as it appeared in the magazine.

sometimes i get pegged for the tough jobs. i have a handful of clients for whom i fall into a certain niche; i’m the go-to guy for stories that require sensitivity in handling, stories that involve advocacy for patients or those in some distress. i’ve even been referred to as “humanistic” by some editors. frankly, i’m very pleased to be thought of this way. i’ve always found myself drawn to portraiture as a humanistic endeavor – i mean, how could it not be? i’m also very drawn to the idea of approaching and treating subjects very simply, without much in the way; a minimum of the unnecessarily stylized or produced touches you often see in other photo shoots.

i was asked by TIME magazine to illustrate a story written by karl taro greenfeld. karl was writing about his younger brother, noah. noah is 42 years old and a low-functioning autistic. the article was to be an adaptation/excerpt from karl’s book, “boy alone: a brother’s memoir“ about growing up with noah and the idea of eventually becoming his brother’s sole steward.

noah lives in a small, somewhat run-down house in los angeles. he’s kept company constantly by at least one nurse. noah is unable to take care of himself in any meaningful way; he can’t clean himself, cook himself a meal or even dress himself. noah doesn’t really talk, either, though he’s constantly vocalizing, making a series of sharp, often loud grunts and other sounds. noah bangs his hands and feet against the floor almost continually, making noises, and sometimes even hits his head against things seemingly on purpose.

when i accepted the job it came with a wide range of immediate restrictions: no auxiliary lighting whatsoever. no assistant. no tripod. noah might refuse to be photographed at all. noah could try to grab or bite me. i was told noah reacts best to very tall, very large men. perhaps he feels intimidated and that works to calm him. however, i’m 5’7″ and quite thin. oh well.

i was nervous going in, but also kind of excited. you don’t often get a glimpse of what life is like for someone like noah. we all hear quite a lot about autism in children, but then people tend to forget that there is no getting better from a very severe case like noah’s, and they tend to lose interest when the sufferers grow up, stop being cute and start to feel like more of a burden. i was also very excited to work from the set of restrictions, photographically speaking. part of the challenge would be in making noah comfortable with me, part would be in getting something that looks good without any control over the situation or any ability to direct the subject.

i met karl at the house on a sunday morning. we weren’t there very long, but karl seemed to think that noah took quite well to me. i shot very quickly, trying to be quiet and non-threatening. i laid down on the floor with noah. i don’t know if karl would admit it, but noah seemed happy to see him, and didn’t even seem to mind me all that much. karl claims we got him on a good day.

read the article here. the issue is out today, may 18th.

my thanks to karl, and to martha, crary and dietmar at TIME mag.

for the past few days i’ve been chasing a 6 week old kitten around the floor of my office, trying not to get my feet clawed and bitten. i’ve had to move fast and be vigilant. still, sometimes the little guy catches me, even though i’m watching him out of the corner of my eye at all times, even though my reflexes are pretty good for my advanced age. for all the many things wrong with me (and there are many) i’m still able to move about the world fairly well. i take this for granted every single day. so, i suspect, do most of you. if i couldn’t get out of the way in time my socks and pant legs would be shredded by now. but what if i couldn’t even hold myself up in bed? i’d be kitten fodder for sure.

lilly grossman has mitchondrial disease. if you remember from high school biology, the mitochondria are the parts of the cells that create energy. the energy to sit up in bed, the energy to regulate your body temperature, the energy to walk down the hall, the energy to dance or talk or write or chase a kitten around a room. this disease is very rare and takes many different forms. in lilly it seems to affect her muscles, primarily. she has trouble holding herself up. she uses a walker, and sometimes still falls over, lacking the strength even to lean on it. because it takes so many complex muscle movements to do so, lilly even has trouble talking clearly at times.

lilly is also eleven years old. she loves high school musical, the color pink and hannah montana. she laughs at the things her parents do, and generally seems to be having a great time, no matter where she is.

as someone who has spent a lot of time around sick children – and, more importantly, as someone who has spent a lot of time as a sick child – i can confidently say that i could not begin to imagine the incredible patience it must take to be lilly grossman. lilly is whip smart. she’s watching and listening to everything. she’s laughing at everything. she just can’t move very well. she has a lot to say. she just has trouble putting the words together and getting them out right. when that’s your whole life you get used to it. you can get used to anything. but just being used to something doesn’t make it less frustrating, especially not when you’re seeing everyone else float so effortlessly through the things that cause you to struggle every moment of every day. now to be fair, this is me talking – i’m not pretending to speak for lilly here. it’s quite possible that lilly doesn’t have a care in the world and she’s perfectly happy, even being a bit incapacitated. in fact, i’m sure of it. but the whole of a life and the breadth of any single person’s experience is never so simple, never so easily summed up in one pat and tidy way.

when i was a kid i was always shocked and a little annoyed when people referred to me as frail or fragile. sure, my heart didn’t work very well, but i was used to it. i didn’t think of myself as fragile, and it pissed me off that other people did. even though they might have been right, and even though there wasn’t anything i could do about it, and even though what they thought didn’t really matter. but i had my happy days and my not so happy days. my cynical attitude, of course, has a lot more to do with the family i grew up in than with any illness i was born into. my point, inarticulate though it might be, is that when i meet these kids i try very hard never to assume that their lives are all bad or all sunshine and roses. the fact of the matter is that their lives are like anyone else’s, full of good days and bad days. it’s just that you have to try a little harder for the good days, that’s all.

lilly’s parents, steve and gay, try hard for the good days. they’ve built their lives around making sure the good days outnumber the bad. they moved to san diego from cleveland, to a climate that was much more stable and much more gentle on lilly’s system. gay was telling me about how so many of her old friends have become the kind of women who say they don’t need a man for anything. convincing themselves, perhaps, if no one else. but gay insists that she’d be lost without steve to back her up. i’ve seen too many families tear themselves apart over the stress of a child’s illness, but sometimes you see one come together heroically, put unnecessary things aside and make their lives work for them. watching steve and gay care for lilly even in the short time i visited with them, it was very clear that in doing so they’re caring for each other just as much.

i’m going to be at the nextmed MMVR (medicine meets virtual reality) conference next week in long beach, california, if anyone wants to stop by and say hello. come down to the hyatt regency, i’m sure it’s lovely. i’ve been asked to put up an exhibit of prints from my book, my heart vs. the real world. at first i was expecting to have to make framed prints, but it seems they have the exhibit area (called “the well”) set up in a way where we each get a 6 by 8 foot bulletin board and prints will be tacked up with thumbtacks. since it’s a bulletin board i figured i might as well treat it as a bulletin board and scatter things around somewhat organically. above is my clumsy photoshopped mockup for that display. click on it to see it bigger.

here’s a description of the conference, from their site:

MMVR is the premier conference on emerging data-centered technologies for medical care and education. It brings together an interdisciplinary, vanguard community of computer scientists and engineers, physicians and surgeons, medical educators and students, military medicine specialists, and biomedical futurists.

MMVR presentations offer a critical review of current progress: from initial vision and prototypes, through assessment and validation, to clinical and academic utilization and commercialization. Extrapolating from the state of the art, MMVR examines and guides the future of healthcare.

This year’s MMVR will feature expanded spontaneous interactive environments. The Well will merge formal exhibits with casual demonstrations. Salon will mingle the visual arts, science, and medicine.

At MMVR, developers and end users collaborate to design the next in medicine. MMVR turns vision into proficy™.

information on other exhibitors here.