Nov. 4th, 2009 11:59 am
talonkarrde: (Default)
His name is Jeff and I meet him at the hospice where I volunteer. Where I am simply there to listen — a ghost, essentially, taking in the stories of those who would inevitably lose their fight against death — Jeff is the resident photographer.

The first time we meet, he is sporting a blue tie, purple dress shirt, and a DSLR camera. I find his gaudy clothing somewhat jarring for this place, and I ask him what the camera is for. This is his response:

“I take pictures of the living dead – and I ask them to smile.”

Every week, Jeff comes in and talks to the residents of the hospice, one by one, asking them how their days are going and if their family has come to see them recently; he spends extra time with those who haven’t had visitors. He takes special note of two groups: those that have just come in, and those that are about to go. For those that have recently been admitted, their first meeting is a trust-building session, where he tells them that he is a photographer and asks about their lives, sharing his own in the process. This sharing is something that most of regular staff steadfastly avoids, to minimize connecting to those who are about to pass away, but for Jeff, it’s a part of what he does. He knows the endings of the stories already, and he’s heard enough beginnings by now that they have started to run together, but it still affects him. From his swollen red eyes to the wet patches on his sleeves after these sessions, I know that he still cries for them.

For those that are about to take their final bows, Jeff has another request: a picture of them. Not a casual picture, shot and forgotten by disposable camera, but instead a full-fledged production. He explains to each patient that the set up for the shoot involves a make-up artist, multiple lightstands, and can take up to an hour… an hour of precious time, when time is rarest of all valuables at this stage in life. As if that weren’t enough, though, Jeff drops the bomb: for this picture, they can’t be on any of their medication — a sacrifice beyond belief, one no one else would ever ask of them.

Some turn him down right away. Their initial reactions, of course, are incredulous. Why invite the pain back in? Why remind themselves of their own decrepit form? Who would even want to look at such a picture? Some understand the request — for those that don’t, Jeff stays with them, explaining for as long as it takes why they should do this final photo shoot.

In the end, it isn’t for themselves, who have little left, but for those that they’re leaving behind. For their children and grandchildren, friends and family, the picture is a lasting reminder that they were alive and strong up to the end, that they did not go into the night with head bowed low, drugged into oblivion. Others’ pictures are displayed on the mantle of the hospice’s fireplace, a reminder to those that come after that they are not alone in their struggles. 


This photo shoot was the last day of Susan’s life. She was made up just enough to ease time’s wounds, but not so far as to try and hide her life experiences; you could still see the laugh lines of a happy life, though she hasn’t been using them lately. The lighting was set up, far gentler than the bright lights of a modeling studio, to accommodate her sensitive eyes. Jeff asks her to smile, and the shoot begins.

Sometimes, those that sit down for him have made their peace with those on Earth (and otherwise), and after a few minutes of pleasant chatter, offer a graceful smile. They are calm, at ease, and sit with a dignity befitting kings and queens.

For others, the road is far more difficult. When Jeff asks the brave men and women that sit for him to smile, he insists that it is a real smile. He knows that it’s difficult, that they’re hurting, and that sometimes it’s simply an effort to keep their eyes open, to not cry out as the pain ravages their body; he knows that they’re scared, but he won’t take a picture until he knows that the smile is genuine

Susan was one of those people. She was eighty years old and dying of cancer; she had beaten it once before, but when God rolled the dice again on her, forty years later, they came up snake eyes. When Jeff had first talked to her, she had agreed to sit for a portrait for her son and daughter, who had been visiting every day in the week that she had been released to hospice care. But after she put on that first fake smile, trembling from the pain, things had gone downhill and she was ready to leave, the most miserable she had ever been.

“This was a waste of time, and you don’t know what it feels like to be in my position, and I’m going to go back to my room and use my remaining time to…to…”

He never stops them if they insist on leaving, but instead tells them a story about the worst time of his life. Sometimes it’s about his parents as they approached the twilight of their lives, other times it’s about his own trials – the miscarriage his wife had, the times he had to dumpster-dive to feed his children. He asks them questions about what they would have done; he offers candid and truthful responses to their own philosophical issues, and bit by bit, he connects with them, until, at some point, he’ll see an opening in something he talks about. Maybe it reminds them about a pet they had, or a sport they played, or a loved one…and he’ll say, ‘do you regret those times?’ 

For Susan, Jeff’s breakthrough was in telling a story about the first fight that he and his wife ever had. He caught the wistful sigh at the end, when he told her of the single red rose he had left on her windshield the next morning as an apology, and asked her about the best date that her husband had ever taken her on. She started describing the Ferris wheel, what the lights of the county fair had looked below them…

And he asks, “Did you regret those times?”

She says, "No…" and smiles lightly, happy memories beating away the pain, and he waits for just a moment before clicking the shutter. Sometimes the smile wavers and disappears before he gets the shot… and then he starts on a different track, determined to find it again.

The act of smiling doesn’t change anything for her, or any of the others. It doesn’t make their disease or their death less easy to deal with, it doesn’t make them stronger people because there will be an eight by ten photograph of them with a smile on their face. They do not gain an extension on life or a magic understanding of the state of their soul.

But for many, it brings them closer to acceptance, because it shows them — and us — that there is always a meaningful choice in fighting to the end. They show a hidden inner strength when they declare with their actions that there is more to life than simply mitigating pain, even in the closing acts of their life. In Jeff’s work, Susan and others experience, for one small moment at the end of all things, the happiness that we all strive for from the moment we are born, and are immortalized with that happiness upon their face.

Their stories and their smiles are their last gift to us, the living.


Jun. 4th, 2008 08:05 pm
talonkarrde: (Default)
I’m not a person that can really say a lot about commitment. I’m young and don’t have that much experience with it, as you guys know. But there is one experience with commitment that I would like to share, here.

Commitment comes in a variety of forms – to a person, to a task, to an ideal. At its heart, commitment is tied to sacrifice and assurance; to commit to something or someone involves sacrificing other things for that one, and assuring them of a place
in your priorities.

My experience with commitment has been more to ideals than to people, which should come as no surprise. As an EMT, the ideal I commit to is helping others - I sacrifice time and sleep every Sunday night to assure the township that I live in that if someone is injured, there will be help for them.

But the easing of pain and preservation of life is a common commitment; EMTs are not remotely alone in that – they are joined by medical professionals and volunteers of all sorts. Every Good Samaritan is committed to the same ideal that I am.

However, there is one commitment that I have come across that I think is relatively unique – the commitment to life in the face of imminent death.

We humans do not often commit to things that are likely doomed to failure; we don’t put our life savings into buying lottery tickets, we don’t jump off fifty-story buildings with the intention of living, we don’t try and move objects with our minds.

But working in a hospice exposes you to people that are doing precisely that. The residents of the hospice will not live their full lives. Most will likely will die in the next month. Survival rates, by the time that a patient is placed into a hospice, are less than 10% for a year.

But that doesn’t stop everyone working there from committing to life, even as they know of the inevitable failure. It’s different than in hospitals, because we are taught that while death is inevitable, we can often beat it back, push it away, and snatch back from the edge those that should not yet be there. With hospice care, it is accepted that death will claim those that we work on – and through that, we carry on.

It is inefficient. It is hopeless. And it restores my faith in humanity, every time I take my place in there. Through our efforts, we bring hope to those that have none.

It takes a great deal of commitment to walk in there, day after day. There is a reason that hospice care is not a field that many choose to go onto – the burnout rate is tremendous. How can it not, when you daily fail where you strive to succeed, and even the victories that you gain are cut short brutally and almost immediately.

And yet, we commit to it anyway. We sacrifice our mental health, our time, our energy for the sake that they may know that someone cares about them in the last few days that they have.  We are there to assure them that whatever they have gone through in the past, we will be there for them at the very end.

That is what I know of commitment.
talonkarrde: (Default)
Intro: for my psychology fieldwork class, I am volunteering at a local hospice. I am acting as nothing more than a person to talk to and help the residents of the hospice; they already have social workers, nurses, psychiatrists, and religious workers...our responsibility is simply to be there if they need to talk to someone.

Links: Pallative Care, Hospice

Being at a hospice is nothing like any other healthcare experience I've had, either on the side of the patient or the provider. This may be rightfully so, because the residents (not patients!) of a hospice are there waiting for the end of their life, instead of trying to prolong it like everywhere else. In hospitals and even nursing homes to a degree, the focus is to keep the person alive – with technology, with surgery, everything they can do. At a hospice, the focus shifts to ensuring that they are comfortable and can, in doctor-speak, put their affairs in order in the time that they have left.

The most obvious aspect of the hospice is the general mood of the patients - it’s a general mood of quiet down-ness. Perhaps you see this in a hospital’s long-term ward, where they keep people that may be there for months or longer, or a mental institution, where some of the patients know that they won't be out for years; I wouldn't know, I've never been to either. The mood in a hospice is not denial, anger, or sadness, nor is it the Tuesdays with Morrie-like acceptance or Randy Pausch's exuberant celebration of life that society likes to see. If anything, the lack of any at emotion at all at their impending exit from this world.

To me, as a teenager, as a EMT, as a risk-taker, this is absolutely confounding. If I knew I were going to die in a year or less, I would do anything I could, experience everything I could — I would go scuba diving in a reef, go helicopter skiing, take a road trip across America and visit friends that I haven't seen in a long time. It's what the Make a Wish foundation does - it allows terminal kids to do anything they want to in the remaining time. And perhaps it's only the media, but you  see this in terminal kids - a lot of them are sad sometimes, happy others, but they are emotive - they will cry, and rage, and laugh, and comfort their parents. What's difference between the young and the old, that the old will quietly wait for death and the young will fight against it every day of their life? I feel that if we were told we were going to die, we would respond with anger, or fear, or anything but a sort o mute 'eh, whatever' feeling that I got from the residents.

But I'm young, and one of the benefits of youth is the ability to do these things - the body still works. For the hospice patients, the youngest of which is in his or her 60s, they no longer have the ability to do most physical activities, which could explain their sitting around. But even if you subtract the physical aspect, I expected more mental activity - a smile, questions of who we were, and sharing of their life story. Maybe my expectations are false - because of books like Tuesdays with Morrie, society's experience with the elderly is only of those that go out heroically. Maybe it was because we were not tarrying long, and for those that are dying, it is inefficient to attempt to converse with those that are not important to them.

Again, if I were dying, I would jump at a chance to influence someone young - share with them my mistakes, tell them of my successes, and generally try and give them some preparation of their life to come. Even if my experiences don't directly translate across to what they might face, it might still be useful - you can never tell when advice originally intended for one situation might be useful for another.

But you know what? Life isn't really something that you can (or should) be prepared for. It should be lived, it should be experienced, it should be celebrated. And perhaps my time at the hospice will be used not just learning from those that have walked the paths before, but also teaching that you can fight death by leaving a legacy. I'm no social worker, therapist, or psychologist; I won't walk in the door and think that I can make a people that are four times my age start waking up with a smile on their face and tell me everything about them, but what I can do is listen and speak, and just be alive. I will listen to anything they have to say, and tell stories about myself and my life, and just encourage not facing death without living the best life they can.

It may backfire - it can be painful to be reminded of things they used to be able to do, to be reminded of the brightness of life when they're facing the darkness of death. So you walk the balance - to be a light without blinding. But whatever else, the  one thing a hospice doesn't need is another person who's just doing this for classwork and doesn't care, another person who sits around complaining that the residents won't talk to them.

And one last thing I can do is pass the stories on (with permission, of course). In the same way that advice may come in handy when we don't expect it, stories can affect those that we never thought they would, in ways we can't imagine.


talonkarrde: (Default)

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