In the words of Pat Benetar, “We are young, heartache to heartache we stand.”
But illness, not love, is a battlefield…
I’d be remiss if I sat here and said that cancer and lupus, or cancer and any other chronic illness are identical, because they’re not. But the book, “Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s,” by Kairol Rosenthal, helps to shed light on the commonalities of experience that do exist when you are young and ill.
“A life that appears freakish, bizarre, and extremely unlikely to the outside world can suddenly become normal to you because, really, there is no other choice but to move forward” (14).
The book talks about illness as a “second job,” and I think that’s completely true. Illness takes up time and energy in ways that no one else realizes. It’s unfortunate beyond words that anyone has to get cancer or lupus or any other illness, but as “Everything Changes” shows, it is especially devastating to young people. I have to concur with Kairol that this is an important, invaluable, and absolutely necessary point to get across to anyone that will listen. Young people’s symptoms are taken less seriously (I’ve been there, I know), illnesses are diagnosed at later stages, and illness impacts more than just the physical.
“At our age, death is what happens if you OD, or you drink and drive, or do something stupid that you could have prevented. It doesn’t happen to you because of forces you can’t control” (22).
So I’ll say, because I’ve been asked before, lupus is not a death sentence. But it’s not a walk in the park, either. I know illness has changed me, probably even in ways that I’m not aware of. I have come to terms with the fact that the life I had planned for myself pre-lupus is not to be, and that everything is different now. Everything has changed. But I think there is a lag, and many of the people in my life are still trying to come to terms with the new me (more about this in my next post, “Everything Changes,” Part II).
But illness, not love, is a battlefield…
I’d be remiss if I sat here and said that cancer and lupus, or cancer and any other chronic illness are identical, because they’re not. But the book, “Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s,” by Kairol Rosenthal, helps to shed light on the commonalities of experience that do exist when you are young and ill.
“A life that appears freakish, bizarre, and extremely unlikely to the outside world can suddenly become normal to you because, really, there is no other choice but to move forward” (14).
The book talks about illness as a “second job,” and I think that’s completely true. Illness takes up time and energy in ways that no one else realizes. It’s unfortunate beyond words that anyone has to get cancer or lupus or any other illness, but as “Everything Changes” shows, it is especially devastating to young people. I have to concur with Kairol that this is an important, invaluable, and absolutely necessary point to get across to anyone that will listen. Young people’s symptoms are taken less seriously (I’ve been there, I know), illnesses are diagnosed at later stages, and illness impacts more than just the physical.
“At our age, death is what happens if you OD, or you drink and drive, or do something stupid that you could have prevented. It doesn’t happen to you because of forces you can’t control” (22).
So I’ll say, because I’ve been asked before, lupus is not a death sentence. But it’s not a walk in the park, either. I know illness has changed me, probably even in ways that I’m not aware of. I have come to terms with the fact that the life I had planned for myself pre-lupus is not to be, and that everything is different now. Everything has changed. But I think there is a lag, and many of the people in my life are still trying to come to terms with the new me (more about this in my next post, “Everything Changes,” Part II).
This book made me feel like it was okay to embrace my bad moments – when I’m too depressed to get off the couch, or I’m kicking the fridge, saying “stupid lupus, stupid everything, stupid life” (and yes, I have done that before – why the fridge? I don’t know).
I would hope that because of our experiences, we have all evolved beyond the who has it worse mentality. This takes me back to an experience I had early on. I was receiving solumedrol infusions. I was very green at this point in the process, so I was trying to ask the infusion nurse if I was allowed to listen to my IPod. I guess she didn’t hear me, but the girl next to me, who was receiving chemo, told me that I could do whatever I needed to get through it. I was very confused, thinking to myself, you have cancer, why are you comforting me? But I think this strikes at the heart of the matter. If as sick people, especially as young people, we don’t get each other, no one else will. And this experience is one that has remained at the forefront of my mind. Being partners in illness is no small matter.
It is a wretched and lonely feeling when our lives stump and bewilder those to whom we turn to for comfort, solace, information, and support. It is utterly dumbfounding when our lives become so foreign to us that even we do not know how to best comfort ourselves” (10).
I really appreciate this book for its raw, real quality, and for the honesty that it portrays. It wasn’t easy for me to read. It often struck a cord in ways that nothing else I’ve read has. I’d find myself reading and crying, realizing that I had felt like the only one in the world to feel this away about illness; to be angry and pissed off, to feel that I had bargained with g-d and lost, to feel completely and utterly alone.
“People talk about learning to live in the moment. There are times when my present moments shine like diamonds and other times when they are stinger sharp. I think I know well how to live in the moment, and I also know how to vacation in the rich recess of escapist daydreaming. Right now, I don’t want the moment. I want to see a future. Some days I feel tethered to a six-month calendar, and I want to see farther and bigger into the distance” (239).
I would hope that because of our experiences, we have all evolved beyond the who has it worse mentality. This takes me back to an experience I had early on. I was receiving solumedrol infusions. I was very green at this point in the process, so I was trying to ask the infusion nurse if I was allowed to listen to my IPod. I guess she didn’t hear me, but the girl next to me, who was receiving chemo, told me that I could do whatever I needed to get through it. I was very confused, thinking to myself, you have cancer, why are you comforting me? But I think this strikes at the heart of the matter. If as sick people, especially as young people, we don’t get each other, no one else will. And this experience is one that has remained at the forefront of my mind. Being partners in illness is no small matter.
It is a wretched and lonely feeling when our lives stump and bewilder those to whom we turn to for comfort, solace, information, and support. It is utterly dumbfounding when our lives become so foreign to us that even we do not know how to best comfort ourselves” (10).
I really appreciate this book for its raw, real quality, and for the honesty that it portrays. It wasn’t easy for me to read. It often struck a cord in ways that nothing else I’ve read has. I’d find myself reading and crying, realizing that I had felt like the only one in the world to feel this away about illness; to be angry and pissed off, to feel that I had bargained with g-d and lost, to feel completely and utterly alone.
“People talk about learning to live in the moment. There are times when my present moments shine like diamonds and other times when they are stinger sharp. I think I know well how to live in the moment, and I also know how to vacation in the rich recess of escapist daydreaming. Right now, I don’t want the moment. I want to see a future. Some days I feel tethered to a six-month calendar, and I want to see farther and bigger into the distance” (239).
Illness is a very personal experience, and for most people (bloggers not included), it is usually a very private one. By letting the reader intimately into the lives of young adults with cancer – a picture that has rarely been portrayed elsewhere –this book highlights what it’s like to be a young adult, on the verge of independence, suddenly being thrown back into the hands of your parents. It explores what it means to need people when we don’t want to rely on others for anything. And it highlights, that regardless of disease, with illness comes a profound sense of change that can rock a person’s foundation to its very core.
*****
(Rosenthal, Kairol. Everything Changes: The Insiders Guide to Cancer in Your 20s and 30s. Hoboken: John Wiley & Sons, 2009.)
thanks for sharing about this book. it sounds very powerful and insightful for those of us with chronic health problems (diabetic here). I can completely relate to your statements about being depressed and kicking the fridge...it's also comforting to know someone else has these exact same feelings when the "process" of the illness becomes completely overwhelming....
ReplyDeleteHope today is a great day for you.
G
I was 27 when I first got "symptoms" and 29 when diagnosis w/MS. Not so "young" that my descriptions of symptoms were always dismissed. But young enough to feel like I lived on the Moon while everyone else was doing what people did when in their early 30's. My husband joked that getting old would be a cakewalk. What I have seen is that now, in my late 50's, I'm surrounded by people with health issues and I no longer feel at all "out of step". I guess that something to look forward to....Rosalind Joffe.
ReplyDeleteLeslie,
ReplyDeleteI just discovered your blog. You are a very gifted and inspiring writer. Thank you for sharing your story.