Monday, July 13, 2009

“Everything Changes,” Part II

“[…] Drink to all that we have lost
Mistakes we have made
Everything will change […]

- Gavin Rossdale, “Love Remains the Same”

In reading “Everything Changes,” there is one chapter in particular that stuck out to me. It is a chapter that I have circulated amongst family and friends – Chapter 3, “Single” – because it touches on a very unresolved part of my illness experience that I have been trying to make sense of.

I have been struggling for a while, feeling like I needed to write a post about sex/relationships, but it never felt like the right time, until I read Kairol’s book. And I’m trusting that my readers will not judge me, or at the very least, will not stop reading because of the details of my life I am about to share with you.

“In my first two years of living with cancer, the number of men I slept with had more than doubled” (48).

When I read this sentence, I stopped cold. This line got to me because it is me – the same thing happened to me in my first two years of living with lupus. Well, if you go from zero sexual partners in 23 years, to one or two in just a few months, it might not seem like much, but for a straight-laced person like me, it caused quite a stir.

The way the people around me were acting, you would have thought I had murdered someone. Maybe murdered myself. But this has nothing to do with self-respect. Because the truth is, I was being judged on terms that no longer applied to me. Yes, the “old” Leslie, the “healthy” Leslie, would probably have never done any of that. But it was about feeling good in a single moment, one moment without pain was worth far more than the potential consequences of my actions. Feeling wanted, needed, loved (doubtful), and even “normal,” was something that I yearned for, and that was the only place I found it. To be held, to not feel alone, to feel like someone else in the world other than myself and my immediate family had a stake in all this, that was what it was about.

Illness has, at times, clouded my judgment and filled me with a sense of urgency that I never had before. Because the fact is, illness is a major head-trip. If you’re not fully secure in who you are as a person, there’s no telling what will happen.

Kairol quotes one young adult cancer patient:

‘Cancer makes you feel really alone, and you just want to be held and feel loved. Or maybe it is a coincidence, and I’d just really want those things right now even without cancer, and it’s just part of being twenty-four. I want to matter to someone else. I want to feel like someone is thinking about me. Since being sick, I’m just looking for a bit of stability, and I think maybe having someone else to love me is it. You can’t control life so maybe you can just date and control that, but you can’t control that either’ (46).

When I first got really sick and no one could figure out what was wrong with me, I didn’t tell anyone, but the biggest thing I was concerned about was that I was going to die a virgin. And somehow, in my mind, this singular event seemed insurmountable.

I can only imagine the reaction had I ever expressed this fear out loud. It would probably have gone over as well as telling my rheumatologist that I didn’t want to be on prednisone because it made me fat and moody. A 40-something man certainly can’t understand where a 20-something woman is coming from in these terms – to him it makes me seem shallow, ridiculous, and heaven forbid, noncompliant (probably the worst thing in the world a patient can be labeled). Because apparently, when you are sick, you aren’t supposed to think about “normal” person things. You’re supposed to transcend all that, and see that life as a mere mortal is fleeting and fragile, not something that should be squandered away worrying about the things you haven’t accomplished. Just like I didn’t think anyone around me would understand that the fear of death was overshadowed by the fear of not having lived. So, when, in a moment of no thought, I decided to end my relationship with celibacy and make sure that dying a virgin wasn’t a possibility, it’s no wonder that the people in my life, the healthy people, didn’t understand the urgency and all of the emotional work that went with it. It wasn’t about sex. It was about what came with it, what came after, and unfortunately, what was very short-lived.

I used to be the one that people envied for having my shit together. Now I’m the one fighting for control of just about everything. I don’t feel like the envied one anymore. And if the people in my life haven’t realized that this isn’t about morals or character, that it isn’t about being that kind of girl, then they can get the hell out. Because if you haven’t been sick, I don’t really think it’s your place to judge.

I think when healthy people hear about a sick person engaging in behavior uncharacteristic for them, the first thing that comes to mind is risk taking. Oh, that person is sick or dying, they feel like they have nothing left to lose. But it’s not about taking risks. It’s about living, and attempting to feel like you matter, like life is worth fighting for.

It wasn’t until I turned to a complete stranger for support that anyone in my life realized that I needed anything at all. And this is my own doing, because I was scared and confused, didn’t know what to ask for, and didn’t really want to have to ask for anything at all. But the truly ironic part is that it wasn’t until this incident that anyone in my life realized how unhappy, how depressed, how scared, and how alone I had felt for nearly two years, and how truly nonexistent my coping had become.

There were a few people in my life who applauded these efforts, who said it was about damn time. But what I really needed, was something that I rarely got, which I think could only come from other sick people, is to understand that it wasn’t about sex. It was about having lived my life a certain way for 23 years, to get burned by illness, and to be left feeling like I needed to refigure things out. So I started with the new, with the untouched experiences in my old life that had hung over my head for years, thinking maybe that’s what was missing. And what I realized, is that what was really missing was a part of myself that no one, other than myself, could give me.

Kairol talks about what it’s like to find love in the face of cancer. Finding love is hard enough. Finding love in the face of illness is definitely something to envy and hold dear, if and when you find it.

Kairol quotes another patient:

‘Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time’ (55).

And she, herself, says:

“[T]he most remarkable cancer patients are not those who are climbing mountains but those who have found a way to climb into bed at night and be honest with themselves about staring fear in the face” (236).

More than anything, “Everything Changes” made me realize that I have yet to really grieve about my illnesses. I tried to stay strong for everyone else around me that I forgot that maybe being strong for myself means not being strong at all. Maybe some of us never come to terms with illness. Maybe we remain forever wondering why we picked the short straw, or why our genetic makeup failed us. What I realize now is that anger – at ourselves, at G-d, at the world – is a necessary part of this process.

I have to thank Kairol for unintentionally giving voice to my story. I could not put words to this story until I read “Everything Changes.”

And I know I have wonderful readers, and I know some of you worry about me often. But I want to assure you after reading this post that I am currently working very hard on trying to be okay…

“[If] a broken heart caused cancer [or lupus, or any other disease] […]” (154), then all my friends would have understood my situation far better than they have. If illness could be explained in terms that even healthy people could really, deeply, intimately understand, well, maybe none of this would have happened in the first place. But I am attempting to live with no regrets, and to not beat myself up for the mistakes, er, I mean choices, I have made.
(Rosenthal, Kairol. Everything Changes: The Insiders Guide to Cancer in Your 20s and 30s. Hoboken: John Wiley & Sons, 2009.)


  1. I am so glad Kairol Rosenthals book was the key to allow you to write and post this blog. I so identify with so many things you said. No one does have a right to judge. I can certainly identify with the reasons you and most of us have made choices related to our conditions/illness.
    I am looking forward to reading the book.

  2. "And if the people in my life haven’t realized that this isn’t about morals or character, that it isn’t about being that kind of girl, then they can get the hell out. Because if you haven’t been sick, I don’t really think it’s your place to judge."

    Leslie, I seriously teared up reading this paragraph. I think the bravest part about what you've written is that *you* are a person in your life who does realize that - that it isn't about being "that kind of girl."

  3. Wow. You are consistently putting out some really good shit. I mean writing. ;) No really, this speaks so much truth.

  4. Leslie,

    Sorry I haven't been reading or commenting lately. I have been going through my own tough times and just didn't have anything extra to give.

    I enjoyed the honesty of your post, as always. As far as grieving goes, it truly is an on-going process, at least I have found it to be. I thought I had grieved it and moved on, and then something new happened and I went through the same feelings again. It's an organic thing - this chronic illness - and we all cope in the best ways we can.

    Thanks for giving voice to what so many feel but fear to say! Keep on believing in yourself, you have great instincts and I know you will be fine emotionally! The fact that you share this with others allows people to know they aren't alone in their fears or reactions, and that is a gift and blessing to others.

  5. Thanks for your comments Kelli, Emma, Jessica, and Maureen for letting me know that I made the right decision about this post. And Jessica, "really good shit," I like it! :)

  6. "But it’s not about taking risks. It’s about living, and attempting to feel like you matter, like life is worth fighting for."

    Very powerful distinction, Leslie! Thanks for sharing this.

  7. Wow -- you're so brave! I'm so glad you wrote about all of this. It's a topic I've wanted to write about in my own blog, but haven't had the courage to do so since I cringe at the thought of my parents or inlaws reading about my sex life. (As far as they're all concerned, my daughter was immaculately conceived. ;-)

    Anyway, I just wanted to say thank you for speaking out about this topic.

  8. you continue to amaze me Leslie. Thank you for the honesty and for sharing.

  9. I'm not a regular reader here (I found you through Patients for a Moment), but this post speaks to me on so many levels.

    "Just like I didn’t think anyone around me would understand that the fear of death was overshadowed by the fear of not having lived."

    My illnesses are all chronic, supposedly not fatal, but I have that very real fear, that something will happen to me before I've had the chance to live. Because i've spent all this time trying to get better, and waiting for some sort of shift that would allow me to live normally, I often forget that I'm already living my life, I just may not be living it the way I want to. (I'm sorry: does that make sense? It feels like it doesn't, but I can't think of another way to say it.)

    Anyways.. just wanted you to know, that I really understood what you were saying.

  10. Thanks for your raw honesty in response to the third chapter of my book. This is an incredible post Leslie.

    Ditto to what Aviva said about not wanting your family to read this stuff about your sex life. I was totally freaked out when I realized - shit - anyone in my family can now waltz into Barnes and Noble and read about my sex life in Everything Changes. I remember when my mom told me that she brought a copy of my book to my 88 year old grandma, and I thought... uh, did you warn her that the word 'blow job' is on the first page?

    Some people in my family have commented that they had no idea how hard it was for me to date with cancer and what I had to go through with men not wanting to be with someone who is sick. I had always wanted to keep that side of my life extremely private from them - and still do - yet it was nice to get bit of recognition and validation from them too.

    Look forward to more of your posts Leslie.


  11. Leslie-just want you to know that I cried all the way thru your post.
    I was diagnosed with Lupus the summer of 2003 at the age of 49, so I actually have kids your age.
    Since 03 I have been hospitalized in Nov 07 and Apr 09. I awoke with weakness on my entire left side. I was in the hospital for about 10 days with every test known to man or beast being inflicted on me and then on to a rehab hospital where they got me moving again and able to function.
    Prior to the diagnosis I could do a cartwheel and weighed 120 lbs. I now have some residual weakness on the left side but I can walk with a little limp. I now weigh 170 lbs which has been traumatic and caused partially from the steroids i have been on many times. However, I have no doubt that the weight is from emotional issues that I'm not dealing with effectively.
    I am also an RN of 30+yrs and had to retire and go on SS disability at the encouragement of my neurologist.
    I was able to return to work part time after my first major flare and diagnosis. What was the most traumatic is working with other medical professionals who had no clue what I was going thru and since I looked ok on the outside I must be ok. Another co worker was diagnosed with stage 4 ovarian cancer at about the same time I was ill. Of course, this is a horrid illness. My co workers went out to their way to make "sunshine boxes", take her to dinner and raised $5,000 for her. None of this was done for me. After this last hospitalization only one person visited me in the rehab hospital and I think I got one phone call.
    I try not to focus on these things but I can tell you that I have shed some tears due to the hurt I have experienced because of it. I have had to convince myself that I'm not a horrible person but it has been hard to come to grips as to why these people have turned their backs on me.
    It is so true that for the most part no one really understands what it is like to live with a chronic illness.
    I have a great husband and he understands as much as he can, but there are times when I feel that he has distanced himself emotionally from me because he is dealing with the possibility that I may not be here long. This is understandable but none the less, heartbreaking.
    I thank you for writing from the heart as you have. My hat goes off to you. You have touched me tonight and for a little while I don't feel so alone. Bless you!!