This post is much longer than usual but is so raw, eloquent, and well worth taking the time to read. Leslie Rott is a 23 year-old lupus patient and grad student at University of Michigan. She’s the creator of Getting Closer To Myself blog. Take it away Leslie:
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 the book Everything Changes in which Kairol writes: “In my first two years of living with cancer, the number of men I slept with had more than doubled”.
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 Wafa’a, a 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.”
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.
Another patient in Everything Changes says: “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.”
Kairol 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”.
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.
Kairol writes “[If] a broken heart caused cancer [or lupus, or any other disease] […]”, 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.
Are you as blown away by Leslie as I am? What parts of her writing could you relate to? Has your intimate life changed dramatically since being diagnosed with an illness?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
August 14th, 2009 at 4:23 PM
I really relate to Leslie’s want to be needed, loved and longed for in an intimate sense. I’m so confused about where I stand in the dating world. I just finished 14 rounds of chemo, the cancer isn’t gone, and I still have such a long road ahead. Is it wrong to put myself out there when I still have so much uncertainty in my life? Am I even supposed to be thinking about dating? It’s hard not to with all the free time I have these days. There are many nights I’d love to have someone that made me feel wanted, and beautiful and to hold me. I know I have cancer, and it may never be cured, but does that doom me to a life alone? Where do you even begin having a relationship with someone when something that big is on the table?
August 14th, 2009 at 8:01 PM
Oh Marie, I have so been there. Here is what I believe: It is never wrong to put yourself out there. You just have to think about how to do it, plan what to say, and be prepared to learn about what dating with cancer is like. Of course you are supposed to think about dating. Why not? Who doesn’t want to be held, in love, and comforted, whether you have cancer or not? And no, having cancer does not doom you to a life alone. I am living proof of that. It is not easy to start a relationship when something that big is on the table. There are certainly men who could not handle it at all, which stung and sucked. But then there was Shannon, who is now my husband, who is up for it all and more. They are out there. Leslie wrote about Wafa’a who is in the third chapter of my book. At the end of that chapter I have a ton of very practical resources I learned from a great sex therapist about how to date, when to tell someone you have cancer, how to reveal it if it is not already obvious. Grab a copy and start reading.
August 15th, 2009 at 10:55 AM
Great post Leslie. So open and honest about a difficult subject. I can very much relate to this issue. To Marie…I am also proof that you can find love during cancer. There are still guys out there that are up for it as Kairol said. They are just harder to find! I was widowed at 25 and diagnosed with breast cancer at 31. I had already been online dating before my diagnosis trying to put myself out there after losing my husband which was tough enough. Then I had a mastectomy, reconstruction and chemo which made it beyond difficult. Bald and boobless I still put myself out there. After many let downs dating the wrong guys who couldn’t handle what I was going through or let me know I was undateble in their eyes, I finally found a great guy who could see past all the scars, the bald head, and the sickness to get to know the person buried underneath it all. We have been married for 6 years. As Kairol said…Of course you should be thinking about dating. I wondered that myself but I just wanted to keep living my life…a single girls life. I still wanted to go out with my friends, continue with my job, and keep dating. I wanted to be hopeful. I wanted to move forward. It was hard, no doubt. But when is dating ever easy anyway. I know…like it wasnt tough enough! You just have to figure out how it will work best for you. Kairol’s book is a great resource for that. I wish it was around when I was dating with cancer 8 years ago. Marie, I think you have taken a big step here sharing your fears about it and your wanting to figure it out. You deserve to find someone who will love you cancer and all….cancer may be what you are dealing right now with but it is not who you are…
August 15th, 2009 at 2:21 PM
You asked,” Has your intimate life changed dramatically since being diagnosed with an illness?” I fear that mine won’t change due to my illnesses. I’ve been sick for many years, prior to getting cancer, in addition to things, last year. So I’ve never really had a dating/love life, largely in part to all my various health issues. Ha, and I’m old, 30, not 23, so yea it’s pathetic. I’m such a wierd, rare case, I often think I’m a unicorn, people like me just don’t exist;-)
I’m still too sick to work, drive, etc. and I read everyone’s stories of dating/sleeping with people in amazement, wondering how everyone felt well enough to do that. So it’s frustrating to me and I wonder 1) if I’ll ever even feel well enough to date/go out and meet people 2)if any guy will really be ok with not only the cancer, but the other health issues, and then all the appearance problems(ie scars from chemo covering my entire torso, increased body hair-no clue why that happened but it’s lovely to deal with;-)
And sure I have some pretty, smart, healthy single friends who can’t find anybody. But then that just makes it scarier to me, to think “crap, and i’m supposed to find someone, with all my hundreds of issues” and i joke with my friends, that the cancer is probably the least of things, sadly, or my “selling point”, considering all the other complicated stuff I’m dealing with.
Though I hate to make this any longer, maybe some of you might find this amusing. I wanted to do my own “social psych expirement” of sorts on how guys would react to finding out about your cancer right away. so when eharmony got their price down to $30 for 3mo, i figured why not, I’m stuck at home, it would amuse me:-)
So i wrote something to the effect of “Since Eharmony screens on 100s of questions, but How cancer-ey do you like your partner to be on a scale of 1-10? isnt one of them, I figured I’d put it right out there” and then i said i was recently diagnosed just finished with chemo. Surprisingly, I did get some responses. Granted I’m sure other people get more, and also granted I never extensively talked to/met anyone of them, for other reasons, but even still, thought some of you might find it interesting or somewhat hopeful that at least some people still responded:-)
July 1st, 2010 at 9:17 PM
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