Wonder Woman or Bionic Womanby Brie Stimson January 3, 2018
Amanda Benjamin appreciates the sympathy, but really she doesn’t have time. She had a double mastectomy last year, open-heart surgery, was diagnosed with kidney disease in 2008 and continues to work fulltime.
“I refuse to let anything get in my way,” Amanda tells me over the phone from her home in Rockland County, New York. “I’m going to do this and I’m going to kick butt. I just get up every day and just say ‘no, I’m not giving up today because I know I can do this’… This is not stopping me from living my life. I am determined to live my life the way it should be.”
Amanda was first diagnosed with a heart condition she’d had since birth when she was 16. She had no further problems until she was diagnosed with kidney disease in her 20s and started dialysis three times a week last February.
She is now working with a Brooklyn-based Orthodox group called Renewal that helps gets donors for people who need kidneys. The group is working on their third transplant at Sharp Healthcare right now. With Renewal, Amanda and her family have posted ads on Facebook, in the newspaper and they hope to do an event for her at the San Diego Jewish Academy where Amanda’s niece and nephew go to school. Amanda, who is on the list at Sharp and is working with the University of Pennsylvania, Yale and Mt. Sinai in New York, hopes to eventually move to California.
“My family, for me, is more out in California with my sister, my niece, my nephew, my brother-in-law,” she says. “My support system is much stronger than it is here. Unfortunately, it’s just my mother out here with me. And with this disease I’m also anemic and this disease is very harsh on my body. I hate being cold and being out there recently for Thanksgiving it just really opened up my eyes to really wanting to be out there fulltime. The only thing really holding me here in New York is my job. And I wouldn’t say it’s a career right now. It’s just a job.” Amanda works in the e-commerce department of a toy company in New York. She’s been there five years.
While she continues to work fulltime, the disease does take its toll, often causing swelling, nausea and blood clots. “Sunday I was going grocery shopping, I felt perfectly fine, but in the middle of it I started to get very extremely tired to the point where I had the grocery cart holding me up,” she tells me. “Every day is different. So there are days that are good and there are days that I just pull through … Today was difficult. I got sick this morning, but still went to work and I felt sick all day, but I want to see can I make it through the day?”
She says there are times she feels entitled to feel sorry for herself – but they’re rare. “I got into my car Sunday night,” she tells me, “and it took me forever to load the groceries in the car and once I got in I had a moment and I just broke down crying because it’s frustrating that you don’t have control when this is going to happen. I was like perfectly fine and then half way through … there I am just exhausted and there’s nothing you can do. I just had a moment and I just broke down crying because it’s just devastating to know that it does this to you.”
Right now, Amanda is in the process of changing the type of dialysis she receives “so I could be more independent and not rely on others,” she said. Instead of being driven to a center for three and a half hours three days a week and getting two huge needles in her arm, the less invasive dialysis would be done at home every day while she sleeps. She could also have her supplies sent anywhere in the world.
Getting on the donor list hasn’t made her life any easier. “Looking for a kidney is frustrating,” she admits. She says Sharp is the fourth facility she’s been involved with, and getting an appointment can take months and sometimes you don’t even get a call back. Often, she says, facilities keep asking her to come back, which can involve a significant amount of time off work when the hospital is out of state. “I send my stuff so in advance, I am so detail oriented with my documents, and when you get there nobody’s even looked at them,” she laments. “I tell them all these things, hoping to avoid another visit and nobody takes the time so that’s frustrating as well.”
Wait times, early appointments and red tape add to the hassle. “Every facility is different,” she says. “You can’t just send [the same] paperwork to another facility.” She says Mt. Sinai in New York City was the most difficult, asking her to return multiple times to the city. “It’s very draining because it’s all day,” she says.
If she does get a kidney from a donor in San Diego, she says she plans to stay. “If I get one out there I don’t want to come back,” she tells me. “Just send my stuff … I’m like it’s meant to be. I’m not coming back. Everything happens for a reason. And I told my boss that. I told her … ‘if I get one out there I’m not coming back, just to let you know.’ And she’s like ‘I don’t blame you.’”
Her decision to have a double mastectomy last year was one of the most difficult – and emotional. “The emotional part of it was being on the table,” she tells me with clear emotion in her voice. “And the breast surgeon, she was amazing, and she – I still get emotional about it, and it’s a part of you that represents you as a woman and you have to make a decision – she’s holding my hand on the table, and I think that’s the most emotional part of it, she said everything is going to be fine and then that was it.” Amanda says it was an extremely intense surgery, but she never hesitated or regretted it. “As I tell people, it’s one less fight I’ll have to handle.” Amanda tested positive for the BRCA1 gene, which put her at higher risk for breast cancer; under normal circumstances a doctor could monitor a patient for breast cancer, but she was unable to get an MRI because of her kidney disease.
She says through it all she’s constantly making jokes to lighten things up. For example, when she met with her plastic surgeon for her breast reconstruction she asked him, “‘can you make it so I don’t have to wear a bra anymore’, and he goes ‘yes’ and I said ‘you’re my man, where do I sign up? can you make them perky?’ … When I discuss it with them I kind of make it not so serious, not so sad. I beat that part of it. It didn’t get to me.”
The most rewarding thing for Amanda is when people tell her she inspired them. “They say ‘I wish I could be as strong as you.’ They go ‘you are like Wonder Woman or Bionic Woman, not sure which one,’” she laughs.
“Knowing that you made a difference for someone else makes it worth it.” Α
Anyone interested in reaching out to Amanda regarding kidney donation can email her confidentially at her Renewal assigned email: