Wed June 12, 2013
Life Resumes: Looking Ahead With Suleika Jaouad
Originally published on Wed June 12, 2013 3:43 pm
NEAL CONAN, HOST:
You may know Suleika Jaouad from Life, Interrupted, the pieces she writes on her cancer on The New York Times Well blog. She's also made time to speak with us over the past year starting last May, about a month after she received a bone marrow transplant. During that conversation, she told us: I feel very hopeful for the future, but I have definitely been humbled by everything I've been through. I don't think of myself as invincible or immortal anymore.
Today, she looks ahead to her 25th birthday, cancer-free, and joins us in just a moment as part of our series Looking Ahead. She stared at too many hospital ceilings. She dreamed about jetting off to white sandy beaches, and given the chance, she did it.
If you're in recovery from a serious illness, what was it that made you feel normal again? Give us a call, 800-989-8255. Email us: email@example.com. You can also join the conversation on our website. That's in npr.org, click on TALK OF THE NATION. Suleika Jaouad joins us now from our bureau in New York, and it's nice to have you back in the program.
SULEIKA JAOUAD: Hi, there. Thank you so much for having me back on.
CONAN: And cancer-free, but I understand you also just came back from a chemotherapy session. So cancer clearly is still a big part of your life.
JAOUAD: It is. It's pretty incredible for me to reflect on the past year. I remember the first time I came on TALK OF THE NATION, my voice just sounded so small and so weak on the air.
JAOUAD: And I really feel like I've found my voice, both as a cancer patient and as a writer and an advocate.
CONAN: How are you doing?
JAOUAD: I'm doing okay. I'm a little tired after this morning's chemo session, and I'm looking forward to a nap. But otherwise I'm doing really well.
CONAN: I understand, chemo - well, that day bad, but the next week is bad too.
JAOUAD: Exactly. It's usually worse. That's when the symptoms really start to kick in.
CONAN: Let me ask you, though, about that dream you had, jetting away to that sandy beach. Travel was a very big part of your life when you were a kid. Your parents moved around from country to country frequently, and that inability to travel, being tied to the treatment center, to the hospital too often, that's what really bothered you.
JAOUAD: Yes. I'm a triple citizen of the United States, in Switzerland and Tunisia. And actually beyond just my immediate family, all of my family is abroad. So one of the most challenging aspects since being diagnosed with cancer was the fact that I wasn't allowed to go onto a plane.
CONAN: Because your immune system was so depressed by all those chemotherapy.
JAOUAD: Precisely. So it's been really exciting for me to put my travelling shoes back on and to get back in touch with that part of my life. I'm hoping to make a trip to Switzerland and to Tunisia in the next year to see my grandmothers. And I'm really looking forward to seeing my family again.
CONAN: I'm sure. But what was it like to stand in line at the TSA, something that most of us get really irritated with? I suspect that was something of a joy for you.
JAOUAD: It was incredible. I joke that I was basically born and raised in airports. I feel most at home at JFK.
JAOUAD: But it was very strange for me because I was travelling with gloves and a facemask, and people were giving me odd looks. And I had never quite realized just how exhausting it can be to walk from one terminal to another. So as wonderful as it was, in some ways it was bittersweet because I realized that I just - I'm not the same person I was two years ago. And that's not necessarily a bad thing.
CONAN: Not necessarily a bad thing. We'll get back to that in just a second. But I wanted to ask you about that beach. Did it live up to your expectations?
JAOUAD: It was incredible and beautiful. And the water was clear and blue, and it was everything that I had hoped for.
CONAN: And all of a sudden you could stop feeling like the cancer patient at least for a little bit.
JAOUAD: Yes. I have about an inch of hair on my head, which I'm happy to report. So for the first time, no one knew that I was sick. No one knew that I had cancer. Almost no one had read my blog. I didn't get recognized. And it was nice for a week to live in that sort of anonymity and to be able to leave my troubles back home.
CONAN: So an inch long, your hair - they might have thought you were a punk but - not a cancer patient.
JAOUAD: Exactly, yes.
CONAN: Not necessarily a bad thing. Expound on that.
JAOUAD: Sure. I'll never go so far to call cancer a gift. It's a really terrible disease. It's taken the lives of so many of my fellow friends in the oncology unit. But like any life-interrupted moment, there are silver linings. And I feel like in the past year, for the first time - I like this expression - that I've been able to make my mess my message. And I've taken a lot of joy in that. I feel like I have a better sense of who I am and who I want to be and what's important to me. And I'm very grateful to have that newfound awareness now.
CONAN: There is also a sense of mortality that many people your age don't share.
JAOUAD: That's right. You know, illness is not something that ever crossed my mind until I got diagnosed with leukemia two years ago at the age of 22. And I don't take things for granted anymore. And that, to me, is a silver lining. I feel incredibly appreciative of my friends and my family. I try very hard to find meaning in the work that I do. And that emphasis and finding purpose has made me a happier person, I think, overall.
CONAN: I want to ask you about a piece you wrote on the blog about a friend of yours who shared your disease, acute myeloid leukemia. And you note in that piece this is a kind of cancer normally diagnosed in much older people. She was older than you but not - well, not "old enough," quote, unquote, to get this particular form of the disease.
JAOUAD: I think that age has so much to do with how you experience disease. Youth and health are supposed to go hand in hand, so you can feel so counterintuitive when you get a life-threatening diagnosis in your early 20s. That's not to say that it's better or worse to have cancer when you're 22 versus 12 or 62. But it's just different. And that friend that you mentioned, who unfortunately died on Valentine's Day, was my chemo buddy, as I called her.
We shared so much in common beyond just our diagnoses, and I think that finding that support and finding that community within the oncology unit was so important to me particularly because we felt so out of place.
CONAN: Have you been asking yourself why her not me?
JAOUAD: Of course. I think that survivor's guilt is a real thing. It's very difficult. And when she relapsed, although I knew that our situations were different, I couldn't help but think that I was going to relapse too. And then those final weeks of her life, it was a really sort of surreal and heartbreaking experience, not only because she was someone that I loved deeply but because I couldn't help but wonder if that was going to be me one day.
CONAN: We're talking with Suleika Jaouad, the writer of the Life, Interrupted blog on The New York Times' Well blog about, well, a moment of returning back to normalcy. She went on a vacation to a sandy beach in the Mediterranean, something she longed to do as she stared up at hospital ceilings. If you are recovering or recovered from a serious illness, what was the thing that made you feel a little bit more normal again? 800-989-8255. Email: firstname.lastname@example.org. Bruce is on the line with us from Visalia in California.
CONAN: Go ahead.
BRUCE: I was paralyzed about 14 years ago due to an accident. And I had always been an athlete. I was a skier and a hockey player as a kid in Michigan growing up, and it was just a part of my life. And when I woke up paralyzed from the waist down and after a year's worth of rehab, I was pretty much confined to my house. I couldn't go anywhere. I felt that I couldn't do anything. I felt that my recreational life was over. The Veterans Administration came in and took me to Colorado to an event called the Winter Sports Clinic where they take disabled veterans and teach them how to ski.
I cried like a baby when I was going up that mountain in a chair lift and got in a mono-ski and fell down a bunch of times and finally mastered the art of skiing again after figuring that I would never ever do that again. And I'm very grateful to the VA for that opportunity.
CONAN: That feeling of the wind blowing through you as you go up that chair lift, you thought you'd never have that again.
BRUCE: Yeah. It was just a beautiful feeling. I cried like a baby all the way up to the top of the hill and then laughed all the way down...
BRUCE: ...as I fell a bunch of times before I acquired the skill of mono-skiing.
And fortunately now, I attend those events and wheelchair athletic events all over the country with the help of the Veterans Administration so that I can give some encouragement to the new boys and girls coming back from Iraq and Afghanistan that as young people have to go through that transition of feeling that my life is over, to seeing the light come on and realizing, well, gee, if I can do this, I can pretty much do anything.
CONAN: Suleika Jaouad, a bit like Bruce, you've become somewhat of an advocate for people who share your experience for young cancer patients?
JAOUAD: Yeah. And I think Bruce's story is an incredible example of how, even in the midst of a life interrupted, there's always ways of turning negatives into positives.
What strikes me about his story is how much finding that support in that community changed his experience. And I had a similar experience in that when I first got diagnosed I felt incredibly isolated, and I was miserable, and I didn't - I felt like my life was over. And my mom kept nagging me to go to a young adult cancer support group. And I absolutely did not want to go. I didn't feel like I would identify with other cancer patients.
JAOUAD: But once I did, I mean, we realized, first of all, that I wasn't alone, but also that there were all these incredible people who are doing incredible things despite their health conditions. And it made me realized that it's time to stop feeling sorry for myself and to get up there and do my thing.
CONAN: Bruce, thanks very much for the call, and we can't wish winter could arrive quicker for you.
BRUCE: Thank you very much.
CONAN: Thanks very much. We're talking with Suleika Jaouad, part of our series of conversations, Looking Ahead. You're listening to TALK OF THE NATION from NPR News.
And you mentioned there's a moment on that - excuse me - Mediterranean Island where you weren't - you'd become something of a celebrity.
JAOUAD: You know, it's a weird - cancer is not something that I wish - that I would wish upon anyone and it's kind of a mixed bag. On the one hand, I wish that no one had to go through what I've been through. And unfortunately, 70,000 young adults are diagnosed with cancer each year.
But I am so appreciative of the platform that The New York Times has given me and I hope to use my voice to raise awareness and to make sure that other young people don't have to go through the things that I've been through.
CONAN: I also read that you're thinking about a book.
JAOUAD: I am. I'm not planning on writing a book about cancer. There are a lot of books out there about cancer. And since I've written extensively about this interruption in my life, I'm hoping to focus on the life part of life interrupted.
CONAN: In your case, your relationship with your boyfriend.
CONAN: You talked about it to some degree on this program. But for those who haven't heard, you guys met just before the diagnosis.
JAOUAD: We met just about six months before my diagnosis. And he has been an incredible rock in my life. Actually, he saw how much writing has helped me deal with my cancer.
And he works as an editor at the Huffington Post, and started a young adult cancer blogging platform called Generation Why, W-H-Y, where he gives that opportunity to other young people with cancer to write and share their experiences.
CONAN: So this is a family affair now?
CONAN: So as you look ahead to - what, you have three or four more treatments left?
CONAN: And that should be - cross your fingers - that should be it.
JAOUAD: Knock on wood. Yes.
CONAN: That is such a change from where you were a year ago.
JAOUAD: It's incredible. In the past two years I've done dozens and dozens of chemotherapy cycles. I've had a bone marrow transplant. And I don't like the expression new normal because I think life doesn't really go back to normal. In my eyes, there's BC and AC: before cancer and after cancer. But I look forward to finding my new different. And I'm really excited and grateful to be able to do that.
CONAN: Do you accept the term reborn?
JAOUAD: Hmm. Interesting. Haven't thought about one. I think that that's apt, certainly with the loss of my hair, I looked like a newborn baby so I'll go - I'll take it.
CONAN: And where is your next trip?
JAOUAD: I haven't planned - oh, actually, I will be going to Nashville in August for the Women's Cancer Survivor Convention. One of the wonderful things that's come out of this experience has been public speaking, which was my greatest fear growing up. I dreaded every presentation I was ever assigned in school. And now I find myself on the road, almost every week, talking about women's health and talking about cancer.
CONAN: I think you figured that part out.
JAOUAD: I'm getting there. I still get incredibly nervous before I go on stage, but it's getting easier with practice.
CONAN: Well, Suleika Jaouad, we wish you the very best of luck and thank you so much for sharing your story with us.
JAOUAD: Thank you so much for having me here.
CONAN: Suleika Jaouad writes the Life, Interrupted column for The New York Times' Well blog. You could find a link to her latest column at getting away at our website. Go to npr.org, click on TALK OF THE NATION.
Tomorrow, four-time Grammy winner India Arie joins us to perform, plus our favorite film buff Murray Horwitz's send-off to the best goodbye scenes on film. Nominate your favorite, email@example.com, and join us tomorrow, firstname.lastname@example.org. I'm Neal Conan. It's the TALK OF THE NATION from NPR News. Transcript provided by NPR, Copyright NPR.