We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients and caregivers worldwide. The people featured in our Q&A series may not have the same type of disease or condition as you, but we hope you find their comments interesting and insightful. We post these interviews in a question-and-answer format in my Inspire Journal here as a news feature for Inspire community members in our many various support groups.
Lindsey Miller, 27, of California, has pancreatic neuroendocrine cancer, a rare and chronic disease. She was diagnosed in October 2010, just after she turned 25. Through social media she became well known as the young woman who made a video to ask actor Joseph Gordon-Levitt, on a date. She did so in late 2011 after seeing Gordon-Levitt in “50/50,” a movie about a young man with cancer.
The 38-second YouTube video got over 400,000 views, surprising Miller, and thrusting her into a media spotlight. The unexpected wave of publicity has prompted Miller to take on a role to raise awareness about pancreatic neuroendocrine cancer, and to speak out for people with rare diseases. To read an article about the YouTube viral video and its aftermath, click here.
Miller blogs at i am a liver.
(Inspire has created an online support group for people affected by pancreatic neuroendocrine tumors, often called PNET. Inspire created the group in partnership with six advocacy and professional organizations that serve the PNET patient community. Click here to learn more about the Inspire PNET Support Community. )
Inspire: You call your blog, “i am a liver.” Describe what you mean as a "liver."
Miller: The most common words terms that are used to describe people who have or have had cancer are “patient” or “survivor.” You don’t hear as often of people having chronic cancer--at least, I don’t. I am both a patient and a survivor, but I don’t want to call myself a patient forever because that sounds exhausting. And I don’t necessary feel comfortable with the term “survivor” either. I have been through chemo and surgery, and while I’ve survived through them, there’s no end in sight, so I don’t attach the same meaning to saying that I’m a survivor. So I prefer to say I’m a “liver,” as I’m just living my life with disease.
Inspire: It seems that you can identify with different communities of people affected by disease--cancer, rare disease, and chronic disease.
Miller: And also I’m in the young adult category of people with cancer. There are quite a few young adults getting diagnosed with cancer but it’s still not as common. When I was diagnosed I wanted to connect with other young adults who have cancer, and while I’m still in a young adult cancer support group, and find value in that, I still feel I need to talk to people who have chronic cancer, to talk to people who know what it’s like not to just fight the battle and be done, who are more “running the marathon,” like I am.
Inspire: How specifically has connecting with people, in person and through social networks, with a disease like yours helped you?
Miller: If you get diagnosed with Hodgkin’s lymphoma or non- Hodgkin’s lymphoma there are protocols that doctors follow. For a lot of more common cancers that’s the case as well. For what I have, it’s more like I go to see my doctors and they rattle off 10 different things I could do right now. It’s just really hard to know what to do first, so going online and researching different treatments and connecting with other people who have what I have and hearing what they’ve done is helpful to see. For example, one of my treatment options was a liver transplant. When I was considering getting on the transplant list, I was connected with someone who has what I have and who got a liver transplant. So, I had the opportunity to talk with him about the process and about how he feels now.
Inspire: You’re out there living your disease, if you will, in a public manner now, though your blog and Twitter and other channels. Do you have any discomfort with you becoming too identified with your disease, so that you want to be “just Lindsey” instead of “liver Lindsey?”
Miller: I would say that there’s enough balance in my life so that it’s OK. There are still people in my life who don’t know I have cancer and there are a lot who do. I went to a New Year’s party, and the host knew I had cancer, but the others there didn’t. There are enough situations like that where I can be “just Lindsey.” For better or worse--probably worse--it affects everything I do. For example I just graduated from graduate school and people ask me if I’ve gotten a job. I’m likely heading toward another active phase in my treatment so I may not be able to get a job right away. Explaining that to people is awkward (laughs). So, whether or not I want to be “just Lindsey” sometimes, it’s hard.
Inspire: Why do you think the Joseph Gordon Levitt video got the attention that it did? Though you didn’t get to have that cup of coffee with him, at least not yet, the video did help raise attention about pancreatic neuroendocrine cancer. What has been the biggest surprise of that experience, with regard to others with cancer?
Miller: I don’t really know why it got that much attention (laughs). I guess it got seen by the right people. It got posted on Reddit and I guess people on Reddit like a certain thing and my video was something they liked. I also like to think my honesty touched people, and then the people who took the time to click the link on the blog could see that I wasn’t just looking for attention but that I was sincerely going through this cancer thing and making this video came up as a way to let everyone know that I have cancer.
Inspire: Being public about having the disease that you have is clearly important to you. What kind of feedback have you gotten from people with serious diseases?
Miller: I get a lot of emails from people who say, “Wow, that video is so great. I wish I had the guts to do that,” and it’s kind of funny, because probably two years ago at this time, I would have been wishing for the guts to do that also.
If you have suggestions for future Inspire Q&As, contact me at firstname.lastname@example.org. Feel free to post your thoughts on this interview. Thanks for reading.