Monday, November 9, 2009

“A Dream Is A Wish Your Heart Makes”???

“I’m sorry I can’t help you, I cannot keep you safe
I’m sorry I can’t help myself, so don’t look at me that way
we can’t fight gravity on a planet that insists
that love is like falling
and falling is like this”
- “Falling Feels Like This,” Ani DiFranco

If this is what Walt Disney meant, he certainly had a messed up sense of humor…

I had originally intended this post to be about a rather disturbing dream/nightmare that I had come to have quite regularly. The gist of the dream is that I need a kidney transplant and there is a certain person in my life who appears to be the only match in the whole world. The most distressing part of the dream is that it never gets resolved. I never know the choice the person makes. I haven’t had this dream recently, which is good, as unfortunately, the person that the dream centered around is no longer in my life.

This is the mother of all posts. It’s one that I’ve been trying to get down on paper literally for months now. I have struggled, time and again, about how to write about the personal stuff that has been going on in my life. This is one of those posts that I’ve sat and cried while writing, every time I’ve come back to it. At one point, this post was ten pages long. But neither I nor you nor he needed to be subjected to that. (I even have a word document labeled “Director’s Cut,” with all the fodder that didn’t make it here)…

I’ve realized that while I may have briefly alluded to the relationship, I’ve never “officially” talked about it. I think at the time this was because I didn’t want to announce anything to the “world” until I knew it was a sure thing, which in the end, it wasn’t. And I also wanted to respect this other person’s need to keep things relatively quiet. But in an effort to move on, I’m breaking the silence. This is my magnum opus, my Declaration of Independence (or my attempt at it).

I went to see him on Memorial Day weekend so I’d have place to stay. And I got so much more than that. I never expected to fall in love. It definitely ranks in the top five best weekends of my life. And there was a sea change, and everyone noticed it. But in the end, this certainly wasn’t the fairy tale romance that I’d hoped it would be, though it certainly was something. And it gave me hope, for a time, that things could be better. In fact, that things could be great. I remember that one month, that we were the most connected, both physically and emotionally, no matter what, I couldn’t stop smiling. And I felt like such an idiot. This person even told me that my happiness made me more beautiful. I wanted to be happy for him. And I wanted to be happy for myself.

But all good things must come to an end, and with a crashing halt, they did. And I felt like my world ended for a minute, like it had been made infinitely smaller in a single moment. And it also made me wonder – did I feel this bad when I was diagnosed with lupus and rheumatoid arthritis? But the two aren’t comparable. The world feels different, though, different in ways that maybe only I recognize. Because I whole hog opened myself up to the possibility of something and someone other than myself.

In some ways, the relationship, however short lived, put a lot of questions to rest. Five years of subtext and stolen glances were gone in the blink of an eye. And at the time, it felt right. More than right, it felt good. I guess in some ways, the experience was a gift in that I had only ever viewed this person as a fantasy, but never in a million years would I have imagined we could have gotten together in reality. And I guess we got each other out of our systems. Or at least he got me out of his...

The first night we spent together, we slept together, but we didn’t “sleep” together. It was one of the most intimate moments of my life. I can’t even explain it. I just know that I felt safe and wanted. And for the first time in a long time, I wasn’t worried about the possibility that the world would come crashing down around me in the morning. I felt like the difficulties in my life were worth facing head on because there was someone there who cared about them, too, not because he had to, but because he wanted to (or maybe because I wanted him to).

I know the exact moment that I fell in love with him – and I’ve never even shared this with him. It was when he was sitting on the couch next to me, staring at me like a drunken puppy dog. And despite everything, he was still looking at me that way. In that moment, I felt like he really saw me, got me, in a way that no one else did. And it was in the way that he kissed me goodbye after our first weekend together. It was the kind of kiss that was tender and gentle, but sure and commanding. It could have stopped time, and I think, for a minute, it did. Having to leave and walk away from that was hard, but it wasn’t the end. That has been much more difficult and much less sure. I guess I was supposed to walk away without having felt anything. And he was hoping to fix me in a way that’s simply not possible. I don’t think he had ever thought past the present moment, and what my life would be like without him in it. And as soon as I got visibly attached, he pulled away…

When someone tells you the things they know you need to hear because they know you need to hear them, are they really being sincere?

And I have to ask myself: how many tears can you cry over someone who isn’t crying over you?

There were private jokes, and some of the hard conversations were easy to have. I learned more about him in two days than I had learned in five years. And there was more that I wanted to know. There was a profound feeling of happiness and contentment that I have never felt before. But as good as things were for a time, we also knew exactly what to say to hurt each other. And we both succeeded in doing that, as well. I’m happy that this person is happy, and has found someone that he is happy with. But I also had hoped that we could be happy… together…

I’m grateful to have been shown that happiness and life lurk somewhere deep inside of me, waiting for a chance to escape. But that’s gone now. And I don’t know if I’ll ever get it back.

Maybe the truth is that, that person never existed outside of my own imagination. Maybe I saw what I did because it is what I wanted to see. I don’t want to believe that, but I really don’t know what to believe anymore. It’s hard to move on, even when the other person has in very obvious ways. It doesn’t make it any easier. I think we were both guilty of seeing what we wanted to see, of seeing in the other person a person that didn’t completely exist in reality.

And maybe this is truly the way things are supposed to be. Maybe we are on different pages of the same book. Two people who deeply care about each other, but nothing more… Or perhaps we are two different books from completely different genres, whose stories happened to collide in a verbal stew both beautiful and grotesque.

Illness, and life in general, are like this too. There’s a lot of physical and emotional pain that comes with illness. But there is also a lot of wisdom. And we wouldn’t be people, and we wouldn’t really be living, if there weren’t both good and bad parts. It’s just that some of the bad things take longer to accept than others.

Ultimately, I don’t want a “partner in despair.” And no matter how I was feeling, he managed to make me laugh, and it was the silliest things that brought on these moments of connection, moments that were never had with anyone else. But then there’s the idea that I am permanently flawed in a way that I’m not sure either one of us will ever truly be able to get past. And that’s my fault as much as it is his. I want someone who looks at me and doesn’t think I need fixing.

“I never thought I could love anyone but myself
Now I know I can’t love anyone but you
You make me think that maybe I won’t die alone
Maybe I won’t die alone
What have I become?
Something soft and really quite dumb
’Cuz I’ve fallen, oh, ‘cuz I’ve fall-fallen, oh ‘cuz I’ve fall-fall-fallen
So far away from the place where I started from”
- “Die Alone,” Ingrid Michaelson
“[…] I never thought that I
Had any more to give
You’re pushing me so far
Here I am without you […]”
- “Love Remains The Same,” Gavin Rossdale

And while he was there in spirit, we were never together when I was flaring. And there’s a part of me that wonders if he would have been able to handle that. I have to believe that the relationship didn’t end over illness. And maybe it’s good that it ended when it did so that he never had the opportunity to end it for that reason.

It’s funny because in my relationship prior to him, I found myself flaring all the time. And that was a pretty clear signal to me that, that relationship wasn’t going to work. But I don’t think he ever caused me to flare. And I think that’s something that worried him a lot. If we fought, and I went into an emotional tailspin, would I flare? And if I did, would he be responsible for it?

Maybe the truth is that the first love brings with it the greatest hurt. Because when it’s gone and you know it’s over, there’s no way of getting it back. It’s something that can’t be undone. And it’s especially hard when the other person doesn’t love you back. They say they care about you deeply, but it’s not love. And they don’t think it ever could be…

Why does it feel so bad to want to be a part of someone’s life who will never be who and what you need them to be?

It is in this moment that all of my illness related insecurities come to bare. I don’t think I can handle dealing with this shit by myself forever. And I worry that I’ll have to and I won’t be strong enough to do it. I don’t want to be 40 or 50 years old and have my parents be the ones that are there. I want a person, my person. Someone who thinks I’m worth fighting for, despite the baggage I bring to the table. I can’t look at what my parents and friends have done for me and push it aside. Because they have really come to help and support me. And yet, the one person I most want to be there isn’t, not even in spirit, and I don’t know if he ever was. And this is the part that hurts the most; the want, the longing, the unfulfilled need. The feeling of having been empty and now feeling emptier.

What I realize now, is that I deserve someone to be that person for me, as I will be for them. But I don’t want to mold someone to fit that role because I need them to. They have to want to. When I meet the person that I’m supposed to be with, I’m going to be all in, I’m going to put all of myself into that relationship, because that’s something that not even illness can take away. And I don’t just want this for me. I want to be that person for someone, too, because I know I can be. Because I feel like I have so much love to give. And I would have given it to him, if he would have let me.

Maybe this would all be easier if this was some guy I had met off the street. If there wasn’t the history of knowing him for five years, of doing an on again, off again dance for nearly a year, and for being together for several months. Because what I miss the most is knowing that he’s there, even when he’s not, and not having to be ashamed of calling or e-mailing when I need/want to.

There are a lot of things I miss. I miss his number popping up on my caller ID. But mostly, I miss the feeling that I am not alone in my struggle for survival; the feeling of someone else caring, someone who doesn’t have to care, makes it all seem worth the physical and emotional pain of being sick. It’s ironic because some days, lupus feels easy compared to this. It’s much easier to harbor anger at an invisible foe that you may never truly know than at a real person.

And it truly pains me to say that there is something that has hurt and damaged me more than illness has. Because unintentional hurt can be the worst kind. He thought what he was doing was the right thing to do. My life wasn’t going well and he “felt bad for me.” And I thought that my actions and feelings were right, too. So were we both wrong?

The truth is, the healthy me probably never would have taken a chance on him. I probably never would have opened myself up to the possibility of him and I. But the drawback of risk taking is that when the risks don’t pan out, it hurts worse than before. Because illness magnifies everything. The slights hurt more, but the good feels better than it did before.

He says I can still share things with him without him judging me. But wasn’t rejecting me as a romantic partner the ultimate judgment?

I really thought things could work with him. He is strong in places I’m weak, and I think I’m strong in some places where he is weak. He’s emotionally closed and I’m emotionally expressive. Maybe it never would have been enough for me. I can’t apologize for feeling too much, just as he can’t apologize for feeling too little.

A lot of people said they thought it would be more than it ended up being. And a lot of people said that he was only capable of hurting me. I don’t know if they were able to see beyond the significant age difference between him and I. I guess I was hoping that he would prove everyone wrong.

Do I wish I was still with this person? In some ways, yes. Do I wish I wasn’t sick? Yes. But these “yeses” are non-issues, because they are things that can never be, no matter how much I wish they could be. So, just as I’m never going to be romantically involved with this person again, I’m never going to be “healthy”. And that’s a reality that I have to own up to.

Lately, I feel like I’m undone, coming apart at the seams. I feel like at any minute the final blow will be hurled at me and that will be that. It will all be over. I won’t have the strength to go on. And right now that’s how I feel. I’d like to think that I won’t always feel as bad as I do right now, but there’s no sense that this is going to get easier. And I know it only seeks to negatively impact my future relationships, so if for no other reason than my own sanity, I need to move on. And everyone, including this person, has told me that I do. And it’s easy for him to tell me to move on. He’s the one who dumped me for someone else, not the other way around. So, this post is a large attempt in an effort to do just that.

Just as there are some things that illness can’t kill, there are some things that even failed relationships can’t take away. Like learning that I have the capacity to really love someone else, even if they don’t love me in return. And even when their spurning causes me some of the greatest hurt I have ever known, I am still able to love him as a person…

I’m the kind of person who feels like I need tangible memories for something to be real. But the truth is, what I have is the most tangible thing of all. What I take with me is the person that I am today, a person whose life has been shaped, in some ways, by someone else. I took a flying leap when I decided to let this person into my life as more than a friend. And ultimately, it didn’t work out. But that doesn’t mean I’m left with nothing. What I realize now is that I may have been alone before, but I’m not alone now. Even if this person is out of my life (at least romantically), there are parts of them that I will take with me. If I hadn’t had this experience, I wouldn’t have anything to take with me. And that’s something, no matter how you look at it. For better or for worse, we are impacted by those who are a part of our lives, even if for only a short time. I guess all I want is to know that I meant something in his life, because he knows that in a profound way, he meant something in mine. (And in case you were wondering, this person did read this post prior to my posting it...)

This is both the beginning and the end. Sometimes the cure is worse than the disease…
“Now don’t forget me
Please don’t forget me
Make is easy on me just for a little while
You know I think about you
I hope you’ll think about me too
When we’re older a little slower it doesn’t matter now come on get happy
’cause nothing lasts forever but I will always love you”
- “Don’t Forget Me,” Macy Gray


  1. Dear Leslie,

    I too struggle with Lupus and all the uncertainty the illness entails. For me, daily living is both challenging in a physical and emotional ways due to the constant struggle to adapt to living with this chronic illness. Frankly, it can be “a royal pain”, as my grandmother used to say.

    Your post today reminds me of my first love, the pain of being rejected, of him still wanting to be friends, the awkwardness of seeing him around the university and/or with someone else. It really hurt at first and left me with a lot of questions. Dating can be both rewarding and hard.

    I think for those with chronic illness, finding support whether in terms of friendships or romantic relationships can be a challenge especially when so many of us hide our illnesses from others. To find someone to connect with, and be truthful with, when we are not “fine” is wonderful. It is possible. Today, I am 38 happily married with two children.

    I have no sage advice, but wanted to say hello and let you know that you are not alone.


  2. Thank you for such an open post.

    2 years ago, I was in what I thought was a wonderful relationship, until he broke it off. When I look at it now, I realize he couldn't be there for me during a health crisis in a way that I needed. That didn't make it any easier, though.

    I'm glad you've learned that you can feel that kind of love for another person. I worry about that almost every day, but I know someday I'll meet the right person and answer that question once and for all.

  3. This post brought up a lot of emotions from myself. I know I shouldn't compare my love to yours since mine died and yours just said no...but at the same time, there are a lot of similarities. We both want what we can't have.

    I am afraid there aren't many out there who would want to take care of me or my health problems. That scares me too...what if I don't ever find anyone. Heck, I don't even have a best friend..and the one's I do have, they don't care enough to help me through my health problems.

    Illness sucks.

  4. Nola, Helen, and Britta, we are all such strong and amazing women, and we deserve to have someone equally amazing to share our lives with - both the trials and tribulations, and the celebrations, too - as Nola does.

  5. Britta, I wish I was with you so that I could give you a hug. I think you're right. We have both felt a loss deeply, to our very core, and we're trying to work our way out of that. Because I think it's more than that. We both want a life that can no longer be. And that is something very difficult to deal with. I know you are only a few years younger than me, but I can't imagine what it's like to deal with illness at your age. I certainly was not secure enough in myself at your age to have powered through like you have. And I know, like me, you have had a lot hurled at you over the past few years - a continued onslaught of garbage. Please know that I am only an e-mail away, and am happy to exchange phone numbers if you would like to talk sometime. I'll also post this message to your blog!

  6. Leslie, this was a brave post. I know how much it takes to be able to discuss relationships publicly, and no relationships make us more vulnerable than romantic ones.

    When you wrote that you deserve someone to be "that" person for you, it made me so happy. Because you do deserve that, but sometimes when we're hurting it is not easy to remember that.

    You will find that person, the person who can stand by you illness and all...and what I've found is that the key to finding that person is first realizing for yourself that you are more than your illness...