The Ambitious BodyBy Catherine Wayland
Interview with Crystal Bergmann, International Family magazine’s Chairperson for Charities and Fundraising, born on may 30, 1984 with Spina Bifida, Hydrocephalus and Scoliosis.
Question: What is the history of your having Spina Bifida? When was it diagnosed?
Crystal: It was diagnosed before I was born in a test while my Mom was pregnant. They did say that it was going to be a lot worse than it was.
Question: Was there a discussion of terminating the pregnancy?
Crystal: I don’t know about that but I know that the doctors told my Mom that I was going to be mentally retarded, I wasn’t going to be able to turn my head on my own.
Question: So, the doctors really can’t know the full extent of the problem or limitations until the baby is born and the medical profession works at early intervention?
Crystal: Yes, medical intervention was immediate. When I was born, my mother didn’t get to hold me because I was rushed to surgery to close the opening in my back.
Question: It seems that a lot was dependent on the success of the
Crystal: Yes, I had two surgeries by the time I was 2 weeks old. One surgery to close my back and the exposure of my spine, and the other was for Hydrocephalus where they had to drain fluid from my head and place an initial shunt in my head for drainage.
Question: How does the shunt help?
Crystal: It’s a manual pump that comes from my brain to my abdomen to relieve any pressure from my brain that would cause brain damage.
Question: Does that give you stomachaches?
Crystal: No, it absorbs into the tissue.
Question: From birth to what age were you under frequent medical care?
Crystal: Until 10 years old.
Question: What assistance was your Mom given to help out?
Crystal: Health Insurance and lots and lots of paperwork. There is also Vesid (New York State Vocational and Educational Services for Students with Disabilities, http://www. vesid.nysed.gov ) that helps with driving lessons or college, and The Center for the Disabled that helps with summer camp programs.
Question: When was your first understanding of your being different physically than other children.
Crystal: Probably once I started school.
Question: Do you remember having any conversations with your mom
about the use of your body, or limitations of your body?
Crystal: I never talked to my Mom about being limited because I thought I was normal.
Question: So for you, your braces and chair were just details like red hair versus blonde hair?
Crystal: Yes, unless you saw the kids kicking the kickball and you knew you couldn’t kick it.
Question: From my knowledge of you, you always seemed to work around those particular details, like I remember seeing a video of you being interviewed by the local news for being a cheerleader?
Crystal: Yes, I couldn’t do the jumps and stuff but that didn’t bother me.
Question: Did you like being interviewed by the news?
Crystal: Yes, because it got the message out to the community that just because my feet don’t work doesn’t mean I can’t do that kind of stuff. I can do anything anyone else can do, just at different levels.
Question: What other activities other than cheerleading were you involved with in school?
Crystal: Tennis, dance, basketball, soccer. I am still very involved in dance. Right now I also teach dance to three and four year olds.
Question: It seemed to me that the first time any limitations bothered you was more after high school, is that true?
Crystal: No, I think it was more the beginning of middle school and the beginning of high school, because my friends started going out with boyfriends and going out on dates, and boys looked at me like I was diseased.
Question: So all of a sudden, you started feeling left out?
Crystal: All of a sudden, there were conversations that I felt left out on and I didn’t feel like I had a crowd that I belonged to.
Question: Is that where you seemed to develop more intellectually and emotionally based relationships with adults and your teachers?
Question: Although you attended regular, mainstream elementary and high school classes, you did form friendships with other handicapped persons outside of school. Where did those friendships occur?
Crystal: In 1993, a doctor told me about a camp in Upstate New York called the Double “H” Ranch (www.doublehranch.org) , that specializes in fun for kids with special needs and critical illnesses.
Question: So is that where you met the many friends I know of yours, like mary and Heather?
Crystal: I met most of them at camp, and also through the Spina Bifida Association, www.sbaa.org.
Question: I know camp has been really important in your life, can
you tell me a little bit about it?
Crystal: It’s the people there. They are just loving and compassionate and it’s like a family. They are not just counselors during the summer, they stay with you during the year and over a continuous amount of time.
Question: The Double “H” Ranch seems to really have a philosophy of “no limits” for children that are ill or handicapped, is that right?
Crystal: The sky is the limit. They think of everything to achieve that for you, whether it’s riding a horse or hanging from a high rope, 45 feet in the air. They have white water rafting, trips to Great Escape, swimming and tennis to name a few things.
Question: Now that you are turning 22 years of age, and you are outgrowing camp, what will you do?
Crystal: I’ve taken leadership roles with them since I’ve become older and started my work life. I’ve done school visits to help promote special programs with the Ranch; I’ve attended the Second Annual Governor’s Polo Event and other activities such as for special mailings and fundraising.
Question: I remember thinking that was such a fit for you – you are such a force to be reckoned with as a speaker and a diplomat, that is why I thought of you coming onboard with us here at IF. Thanks for making the time for us. Your schedule is busy right now, what are you doing?
Crystal: I’m working for the Center for the Disabled as an Imaging Specialist. I work 4 days a week. I work for you at IF, I am involved in teaching and participating in dance, and working on my driving lessons. I am also quite busy with my church in functions like choir and service.
Question: I know you did hit some bumps after high school, for example, a private college that didn’t support disabilities.
Crystal: Outside of places like the Double “H” Ranch, and specialized organizations, people view handicapped persons differently. Even though I think I can do everything, the community views it otherwise.
Question: You’ve talked about sometimes really struggling with your life in connecting with the community at large and how you’ve dealt with depression. Can you tell me a little bit about that?
Crystal: You want to fit. You want people to think highly of you and sometimes, people are degrading.
Question: So you have experienced the fact that people see your chair and just write you off.
Question: How do you cope with the depression you have experienced?
Crystal: I do the same as everyone else, therapy or talking to someone I trust. I try to keep busy with friends, go to see live music shows. I’ve always liked music.
Question: I’ve seen you really advocate for yourself, you are quite a fighter and a winner. You seem to not accept no about anything. That has always made me very proud of you.
Question: I must admit that when you left college, I worried that it had been a very big blow for you. maybe as much as I see you as the same as me in a lot of ways, I too must treat you different because I worry you are more breakable somehow. Do you think that is the other misperception?
Crystal: What you see on the outside is always different than what is on the inside. But I think that is true for everyone. People need to treat me the same as everyone and simply ask me what I’m feeling, rather than assume and try to fix it for me. I have always needed the same help growing up as any other person, I’ve needed to learn how to live on my own.
Question: Well, I think you are doing great finding your map, and
I trust more now that you will call me when you need help. And I
promise in return, that I will ask you more questions, rather than
give you my answers. Deal?
Note: Crystal Bergmann is a cousin to Catherine Wayland on her husband John Hoffman’s side of the family. Since a big family reunion to welcome Catherine and John’s first son Jackson, Crystal and Catherine have gotten to know one another as family and as dear friends.
If you would like to write to us here at IF and talk about your family member or yourself with special needs, we would like to hear from any and all of you. In this time of high technology testing in unborn fetuses and early terminations, one can’t help but think about a world without as many ambitious heroines like Crystal, and worry at the loss to the world.
If you live in Europe, the Double “H” Ranch has sister camps in Ireland and France. The link for the “Barretstown Gang in Ireland is www.barretstowngc.ie/And the link for L’Envol in France is www.l-envol.org/