Taking the History and Giving It Back

14 Apr 2013

Lately people have been asking me about the private, pro bono, client-centered histories I sometimes provide for people who have been subject to medical trauma. Providing these histories to individuals -- work that remains almost completely invisible to the outside world -- has been the most consistently satisfying aspect of my professional life. I would love to scale up this work, to get other historians involved in it and to provide the service to thousands of people who have been subject to trauma -- and this is why I call it “the million dollar fantasy.” With a million dollars, I could scale it up to a national system. Until I win the lottery, here are answers to some FAQs about this work:

How did you get into doing these?

By accident. Early in my involvement in the intersex rights movement, Bo Laurent (then publicly known as Cheryl Chase) introduced me to people who had suffered profound medical trauma because they were identified by some doctor as intersex. I tried to help these people, as well as the intersex rights movement, by listening to their stories and by sometimes writing them up for sharing. The more I got involved in intersex rights, the more varied kinds of historical help I provided to the movement and to specific individuals. Sometimes I helped people obtain their old medical records, sometimes I helped them interpret them, and sometimes I helped them understand the historical context of what had happened to them.

How did this work branch out from there?

Again, by accident. In 2004, I met a visual artist named Deborah Costandine when we were both presenting at an art exhibit panel at the National Museum of Health and Medicine. Listening to me talk about my work, Deb suddenly confessed that she had still-birthed “a conjoined twin” almost 30 years earlier. She explained to those present that the doctor had never let her see her offspring. By not knowing what her offspring looked like, she had been left in a place of unresolved grief.

After the panel, I gave Deb my card and asked her to tell me if she wanted my help figuring out what happened. I told her I could probably help her understand what her baby/babies looked like. Some time later, she took me up on the offer, and she ended up doing the most amazing art work as a result of her extraordinary grief process. (Read about that here.)

After I provided that help to Deb and (with her permission) wrote about it, people started to send me other folks who were medically traumatized who might benefit from my help -- whether that was just writing down their histories for them, or helping them find out what happened to them, or some combo. Since Deb, I have helped a number of people with conditions I have never studied per se. Sometimes that means I have to seek help understanding the conditions. When I do that, I simply explain to the external helpers (usually physicians) that I’m working on a private history and cannot share with them the details of the story. People have always been tremendously forthcoming with informational assistance for this work. Some doctors who have helped have asked me if they can refer certain patients to me. (The answer to that is yes.)

The work with Deb ended up public. Is that typical?

No. In fact, in the last few years, I came to realize that I needed to resolve, when taking on a new “client,” that I would never ever publicly speak or write about that client. This is because I realized that, when I’m listening to someone about whom I might publicly write, I’m listening in a different way. I’m listening not just as a “servant” (for lack of a better word) but as a “user” of sorts. So I realized I needed to resolve never to write about these people when I take them on as private clients, because I need to make sure they will never function as vehicles to any gain for myself, except for the satisfaction I derive from helping them (which is payment enough!).

In fact, I’ve come to be quite leery of doctors who write about their own patients, because of how I’ve noticed my own brain working differently when I am seeing someone as a potential literary subject versus someone I whose needs I must serve with no conflict of interest.

Do you charge for this work?

No. Asking for money would change the relationship. I see these as metaphorical midwestern “covered dishes” -- gifts made on behalf of the community to which I belong -- in this case, the health care community, which has unintentionally harmed these people.

When you write a private history for someone, what does it usually look like?

Usually it is 4-6 single-spaced pages long, although some are longer. Sometimes these are in the second person (i.e., I am writing to the “you” that is the client, explaining and documenting what happened in the form of a history) and sometimes they are in the first person (i.e., I compose in writing the oral history the person tells me). Often they are a combo: I write down the person’s history in their voice if that is what they want, and then include a cover letter from me to them, telling them what I think they need to hear from me.

If a client wants a first-person piece and wants me to help them edit what I sent them, I always do that. A few times, we’ve gone through three or four rounds before the person feels she or he has what is wanted and needed.

Who owns the product?

The client is the sole owner of the product, every step of the way. I keep a copy just as a back-up unless the client asks me to destroy the back-up, in which case I destroy it. I make sure the client understands this is their work, even if I have contributed to it. Part of helping these people, I believe, is the combination of taking the story and giving it back. These traumatized individuals need to (re-)own their stories, because so often they feel that their story has somehow left them, to become something unfamiliar.

Does the client have to keep secret what you’ve sent?

Not at all. They can do with it whatever they want, and I make sure they know that. They can share it with loved ones, doctors, religious advisors, therapists. Some have shared theirs with lawyers, journalists, and legislators. (And yes, that does give me extra satisfaction, although I watch silently from the sidelines.)

Why do you think this helps people?

I’ve thought about that question a lot. It appears that humans across cultures tell stories about trauma. This suggests to me that there may be an evolutionarily adaptive aspect to turning trauma into story. My colleague and friend Jon Adler (whom I met via our both being at Northwestern at the time) has been tracking the way that narrative functions in psychological healing, and his work strongly suggests that narrative development happens as part of (not after) therapeutic healing. Art Frank’s work on The Wounded Storyteller has also helped me think about how incorporating wounds into one’s life story helps one go on.

That said, maybe this work helps just because I’m somebody (anybody “outside”) taking seriously the harm these people have experienced. Maybe what’s going on is partly just a validation, a witnessing -- saying, essentially, “I believe you. And yes, this really did happen to you.” (Some people have told me that they keep handy what I’ve written for them, so that when they have one of those moments of uncertainty, they can pull it out and say, “Yeah, that really did happen.”)

In any case, I’m convinced it does help people. The “thank you’s” these people have given me are like no others in tone and depth. The gratitude feels so deep that I find myself engulfed in my own sense of profound gratitude.

Do you check people’s stories?

No. This is not work I will publish, and my name will never really go on it in any formal way, so I do not see it as scholarship. (Scholarship, by contrast, requires a certain degree of checking.) That said, if something someone is telling me doesn’t make sense, or I know it is wrong, I will let them know that. Part of what I’m offering is my service as an historian, so if a fact is just wrong, it would be irresponsible for me not to point out to that person (gently, if necessary), that it is wrong. I’ve never had a bad reaction to this kind of correction, and on the contrary, most people are very glad to have help sorting out what could be true.

Do you ever turn down a potential client?

Yes. If a person has unreasonable expectations of our process, or is extremely fragile and does not have good mental health support, I will not work with that person. For example, I will not work with people who expect me to function as ghost writers for their autobiographies. (That has happened.) As far as mental health, usually nowadays the person referring the client to me can help me determine whether the person has adequate mental health support before I talk to the potential client.

How long do these usually take to do? What does it cost you?

Depends on the situation. Some take just 4-6 hours of my time, and some take a few days of work. Some cost me a bit in terms of research expenses, but never very much. The only real cost is “lost time,” which doesn’t feel lost -- it feels gained.

I never ask for reimbursement for expenses or my time because, again, I think adding money to this relationship would make the relationship something other than what it needs to be -- a gift to the individual that I happen to be giving on behalf of the community.

How come you haven’t written more about this?

Because I have sworn off ever writing or talking about the people to whom I give this service, it’s hard for me to write or speak about it, because it is impossible to give examples except for ones that occurred before I made this resolution. Recently a very high-profile magazine writer asked to write about this, and asked for introductions to a few clients. I agonized over this and picked a few to ask, but soon, just asking made me feel that I had broken my promise to them and to myself never to seek to gain anything from these except the satisfaction that comes from providing the help. So I had to tell the magazine writer I needed to pull back on helping him.

What would scaling up look like? What exactly is the million dollar fantasy?

I would dearly love to have lots more historians offering these services and to make known that our services are available to those who have undergone trauma. I would like to expand outward from medical trauma to also consider those who have been traumatized by accidents, wars, terrorism, sexual abuse, and so forth.

To do this, I’d have to create an organization that had paid staff to triage the clients and the historians. It is mainly that paid staff that would cost money, although I would also like to have grants available to historians that could help cover research expenses. If we had enough money, we could even have grants to pay historians for this work -- for example, to hire some grad students in the summer to do this work, and to hire professional historians who are out of the mainstream job market for whatever reason.

First, I’d have to get together a team of advisors to work out the details of how this would be done. My goal would be to have some basic rules, including basic screening guidelines for clients and historians. But I would like to keep the actual work as informalized as possible, so that it remains as client-centered (flexible) as possible. I believe that a big part of the “success” of this work lies in my coming to it without a ton of rules and guidelines. Doing this privately, with no publicity and no money trading hands, has allowed me to come to it as much with my heart as my mind. Retaining that seems really important.

What else is there to say?

Just "thank you" (again) to all of the people who have allowed me to serve them in this way. There have been many days when I have had a hard work day -- when I have felt ineffective, unproductive, misunderstood, or under-appreciated -- and all I have had to do to feel better is to think of this work. It is for that reason that I keep in my writing cottage a statue Deb Costandine made and gave me. (See below; it is called “The Girls,” and it is of Abagail and Brittany Hensel when they were about 5 years old.) Whatever good I did Deb, I can safely say she did me ten times that. Maybe a hundred by now.