In search of work that spoke to her heart, Luciana Cramer started out working two hours a week teaching computer classes to people with brain injuries. Now eight years later, she’s the executive director of Jodi House, a nonprofit organization whose mission is to provide services to adults with such injuries.
LD: How do people with brain injuries come to Jodi House?
LC: Normally when someone has a brain injury they go and get treated by the doctor, and after that they need a period at Rehabilitation Institute (Cottage Rehabilitation Hospital) where they will learn basic skills so they can go back to their homes and not need a nurse by their side on a daily basis. When they are about to leave the Rehabilitation Institute the caseworkers introduce them to Jodi House. If they want to come or not it’s up to them. It’s not a requirement for their process. It does help them get better faster if they come to Jodi House.
… We help them improve the skills that they have to work on … Some people have problems with balance, some people have problems with memory, some people have problems with speech, and some people have problems with behavior. A brain injury can cause a person to be angry, to be dissociated, to be apathetic. Emotionally there is a big toll and the difference between acquiring a brain injury — and that’s what we do is help people with acquired brain injury — or a person who was born with a brain injury or something — cerebral palsy, is huge. If you’re born with a brain injury that’s all you know.
LD: So you’re working only with people acquired brain injuries?
LC: Yes, and when you have an acquired brain injury that means that you had a normal childhood … you had developed a set of skills that you relied on, you had developed relationships with family members and friends, but once you had your brain injury all that is gone immediately — it’s all gone. You cannot relate to your friends anymore. Your sense of humor is different, your behavior is different. Every one of us has roles in their families — you know, obligations, or things that you’re supposed to be doing and you can’t do it anymore.
So there’s a really high incidence of divorce after brain injury because you’re no longer that partner that the person married. Relationships with parents and children become very hard because sometimes you become a child yourself, you can no longer be the parent, but people are still expecting you to be a parent and you’re letting people down and you know that.
It’s very sad for everybody. You no longer have the skills you worked so hard to develop. If you’re a professional, whatever level you’ve been working at, those skills are pretty much gone. So to have the help of a community — that’s what Jodi House is, it’s a community setting — that includes people who have already been through that and recovered a lot of their skills and their will and their joy. Sometimes people come here and they are so devoid of any joy. They have no hope, but by being together with others and learning they can say, “Hey, this is not it. We can get better and together we’ll help each other.” It is uplifting from Day One. It’s really interesting when you see that happening and it never fails.
But you have to do that first step. … Basically we do what family members would be doing if family members had the time and the patience and the ability.
LD: What kinds of things?
LC: We have cognition workshops, we have memory classes that give them tools, exercises they can do and we will do that with them. Sometimes people lack the motivation to do it by themselves and it’s such a strain on the family members. The family members have not only the time investment but the emotional investment; it’s a double hardship on them. And we help them for years, for years — as long as it’s necessary. And we do see everybody getting better.
LD: Is there any kind of family support group?
LC: We try to support the family as much as possible with support groups for families and we have speakers from the community bringing topics that are relevant not only to the person with brain injury, but to their families. We find that it’s really, really important. And normally even before the person with brain injury comes the family is here to gather information, and sometimes they come in and ask what’s going to happen to my family? He is in a coma right now; what can I expect?
LD: Oh, so very, very early then.
LC: Oh, yeah. … If your family member had a stroke you can say these are the people with stroke here. Look how much better they are now. So there is a lot of hope and people are in search for hope.
… What they have in common is this strong will of getting better and almost a craving for human relationships and being around people. If you just think about it, what it would be to you as a person to have a brain injury. Let’s suppose, God forbid, but you get involved in a car accident and then you can’t think as you are accustomed to, you can’t function as you are accustomed to, maybe you have mobility problems, maybe you have speech problems. So you try to communicate and people don’t understand you. So because they don’t understand you they start moving away from you and soon enough you’re all by yourself.
LD: It sounds like interesting and rewarding work.
LC: It is. You know before working here in the ‘90s I volunteered for Sarah House. And, of course, I loved it and I did with all my heart, but it was hard. … But this is completely different because I see them at their worst, and I see them getting better and better and better, so it’s very very rewarding to me. It’s a joy. Every time I leave here my heart is filled to the top because I see the difference. And it’s not like the difference that I make, it’s the difference that they make for themselves because I can’t make them do anything. I don’t bring them there. I just keep the house open for them and you see that they have the will and the power, and it’s very inspiring to see anybody working so hard to recover their sense of self and to feel like a whole being.
LD: What’s going on with your location? I know Hillside House owns the property and is going to be doing some development.
LC: Yes. We have already identified a new location — Chad’s Restaurant, 625 Chapala St. — and it has actually been purchased for us by an anonymous foundation. It’s now in trust and, basically, we were presented with a challenge grant. … We will need to raise $1.5 million for an endowment by the year 2011. … We are planning to start a capital campaign in six months.
LD: That’s great. What else do you do when you’re not working?
LC: I am a water baby. (Laughs) I like scuba diving, I like snorkeling, I like boating, I like fishing, I like swimming — anything that’s in the water I am there, which is so so great to be here. Santa Barbara is so beautiful, and warm water is just a little drive away like going to Catalina and the islands right here.
LD: If you could be invisible anywhere, where would you go and what would you do?
LC: (Laughs). OK, I would probably be roaming the back doors in Congress finding out what people are actually doing on those back-door deals. The political scenario this year was so interesting, so wonderful and it’s also the year I became a full American citizen. This was my first election and it was really, really a thrill to me to actually vote for the first time ever.
LD: That’s great. I think sometimes people who get their citizenship have much more appreciation for it than the rest of us.
LC: I do have deep appreciation just for the fact that you can do it, your vote counts, your voice counts. I was born in the year of the military dictatorship in Brazil so we didn’t have that. Actually, we couldn’t even speak out loud, so I deeply value the values that this country stands for.
Vital Stats: Luciana Cramer
Born: Jan. 17, Sao Paulo, Brazil
Civic Involvement: Sarah House, Jodi House
Professional Accomplishments: Attorney in Brazil; Web developer, World Trade Center in Oxnard; ran her own Web site development business; Jodi House executive director
Little-Known Fact: “I used to navigate for rally racing cars in South America. We had a blast. It was fun. I wouldn’t do that anymore, but when you’re 19 it’s great.”
Write to leslie@lesliedinaberg.com