Tuesday, January 24, 2012


I think most big events in life have a soundtrack. When I first met Jon and we began talking, we of course discussed music. He introduced me to a bunch of songs I had never heard before. I added those to my iPod playlist, along with some of the biggest pop songs circa that time period. He even sent me a couple of his band's songs at the time (which were top secret). I remember listening on my walk to the train station and subway ride to work. I lived in Forest Hills at the time so my commute was about an hour. If I close my eyes and listen to a certain song, it's like I'm there. I can feel the brisk February air on my skin, I can feel the extra bounce in my step, and the smile on my face when certain songs would come on and spark a "Jon moment". Oh, who am I kidding . . . every moment has been a "Jon moment" since I met him. So many memories bring a smile to my face, and although I am thankful, I can't help but dread the day that I can't listen to those songs because they hurt too much.

Sometimes that seems so long ago... almost two years now. Both of us have been so changed by the events of the last two years. We are different people . . . older, somehow. We've learned too many hard things for people of 25 and 26 years of age. Our connection and our love, however, have never wavered.

The past few days with Jon have been bittersweet. He's been himself and awake. We were able to actually talk about what may happen in the future. It was a horribly difficult conversation, but we were able to really talk, and cry together. Jon said he would not stop fighting, but I made him promise not to fight just for me if he is suffering. I explained how much more I want for him... how he deserves such a better life than he has been given. I confessed that as much as I want him next to me, it was more important to me that he has a full and complete life, free of the constant battling he's had to do for so long. It broke my heart to talk about the idea of losing him... to look him in the eye and for us to both realize that we may have to say goodbye. But how lucky that we actually got to have that conversation! Some people wish they had the chance to say all they wanted to say to their loved one. But it was bittersweet and heart wrenching, nonetheless.

We canceled our June 1st wedding. Although heartbreaking because we were so looking forward to it, we decided it was the right thing to do. We both agreed that the wedding did not change our commitment to one another, or make our union any more legitimate. Jon did request that we get him a wedding band, and say what we want to say to one another. It has always been about us.

Sometimes I don't know how to feel. The days seem so long and I get angry at myself for feeling "bored". I know that these moments, sitting next to Jon on the couch, are what someday I will long for. I keep touching him and keep one hand on him while we sleep. I just keep trying to memorize the feeling of my skin on his. I'm so scared of the day he's not here anymore. When I can't just reach my hand across our bed and touch him. Feeling his presence is the only thing that stops the anxiety I feel. Holding his hand is the only thing that slows down my rapid heartbeat. I am so utterly afraid of not having that anymore. And so angry at myself for not somehow doing a better job of absorbing all of these moments we have together.

This situation is impossible. No one can tell me how to handle it, or how to feel, or how I will survive each day... A widow of a young man who lost his battle to the same cancer last year told me that she knows he wouldn't have allowed her to fall in love with him if he didn't believe she could get through it... and that means all of it. I have to believe that as well.

Although I have a hard time believing there is a "reason" for this, I do believe there was a reason Jonathan and I met. We changed each other's lives. Maybe the ending is not going to be what we wish for and we can both be angry about that, but the bottom line is we have done such an amazing job of loving each other these past two years. We've loved one another through it all. That's something that can never be taken away. My mother says the reason it hurts so badly is because of how amazing it is -- You can't know all of this pain without knowing such incredible love. And although this thought does not always comfort me, sometimes it does. Just knowing how lucky we've been for this long... I will forever walk through this life with a knowledge of a love most people never even know exists. I will never settle for anything because I know what two people are capable of.

No one knows the future. So for now, each moment will have to be enough. I will memorize every part of him, every feeling, every word... and cherish every second he is next to me. And keep praying for a miracle.

Saturday, January 14, 2012


I've been trying for weeks to finish up the work I owe my professors from last semester. They were kind enough to give me an "Incomplete" and afford me the time to complete everything. Spring semester starts in 9 days, and if I don't start on time, I will be set back another 1.5 years in obtaining my Master's degree. My plan all along was to go to the NYU library. It's quiet there and somehow watching other students buried in books forces me to get focused. The truth is, the few days over the course of the time I've been home that Jon was actually doing well enough for me to leave him alone, I wanted to spend with him. At the moment, I can't really go anywhere unless someone is here to stay with him, and it's hard for me to justify using my only few hours outside of this apartment cooped up in the library.

So while Jon is resting, I figure I'll attempt to get motivated. The thing is, sitting in our living room, I'm distracted. I'm distracted by every sound, every turn he makes in bed and rustle of the sheets. Background noises like the heat and other apartments' flushing toilets seem extra loud. I can tune all of that out, but the hardest part is I can't stay focused on the computer screen. My eyes constantly are drawn to the cluster of picture frames hanging on the wall to my right. "Live, Laugh, Love." One of my best friends, Ana, got the set of frames for me last year when Jon and I moved into this apartment. I remember sitting on this same couch deciding which photos to use, and into which specific section each photo would go. "Laugh" was easy. I found pictures that made me laugh -- Jon dressed as a nurse from two Halloween's ago, and one of him giggling as I made silly noises in his ear. We look so happy in that picture, it's one of my favorites. Mostly because I remember the exact moment, and what we were giggling about, and just how silly we were being. "Love" goes in the center and I remember thinking any picture of the two of us works just fine in that section. But I remember hesitating a bit over the "Live" section. I didn't want to throw just any old picture in there. I really wanted it to represent what that word meant. I kept myself completely out of that section. It seemed more relevant to depict Jon truly "living". I chose a picture of him playing flag football and one I took of him on the beach in Cape Ann, the first summer I went away with his family. Looking at it now, I'm not sure other people would get why it seems fitting. But I love that picture. It's him, with his new sunglasses on, smiling, looking healthy, with his shirt off and the sun shining behind him. The picture always seems so bright to me and as I study it, I realize, it's his smile that really lights up the picture.

My eye keeps going to that picture. How could things change so quickly? That summer he had just finished his initial chemo regimen and he was doing great. We did so many fun things that summer... cancer was just a side note, an annoying visit to the clinic or a few days of dealing with nausea. We promised each other we would never let it take over our lives or stop either of us from "living". It makes me sad to think about. Don't get me wrong, I feel grateful for all of those good days. They just seem so far away right now -- but still barely out of reach.

I won't sit here and say things have kept getting worse from that point. We had rough patches, and we pulled through. Jon fought like hell and never ceased to amaze me, and we went on with our lives as best we could. But this one... this over a month long "rough patch" of extreme downs and minute ups has really been a challenge. I keep waiting for the upswing. Maybe that's why I keep looking at that picture. I want that SO badly. I want to see him smile like that, and run on the beach. Right now, I'd settle for a walk to the park.

I'm not giving up hope. A few weeks ago, the doctors basically told me Jon was dying, and that his mental status would probably not return to normal. As much as I didn't want to believe them, I had to at least consider they were right and that he wouldn't come back. And then he did -- he came back to me, and his cancer seemed stable. I approached him with the subject of dying multiple times and each time, he laughed at me and said he was going to get through this. We talked about how things needed to improve, that physical therapy had to be intense and he had to eat to put back some of the weight he'd lost. We decided that the way things were, the way he was living day to day, was not a life. We both wanted more.

This past week, Jon started having seizures. Not violent ones, like the image that probably comes to mind when you hear the word seizures. Eyes rolled back, unresponsive, an occasional twitch. Scary enough for me to see. MRI and CTscan were stable. Doctor thinks it's from "irritation" to the brain. That can still mean from the past radiation he's had (my gut feeling), or it could mean cancer cells. The answer can ALWAYS be cancer, but I don't think it is this time. He's back to sleeping all day, and although he's not confused, he's not totally himself. No seizures for 36 hours though, fingers crossed the meds are working. Once we get that stable, then maybe we can finally start getting him stronger.

I miss him. I keep playing back moments from before this new obstacle started. What was the last really fun thing we did together? What if I missed it... what if I missed the last moment that he was totally and completely himself? What if we wasted it watching "Family Guy"? I'll never know the answer to that. I just pray he comes back to me again because we have so much more to do.

I think about losing him. Sometimes, as morbid as it sounds, I even try to imagine it. What would it feel like? I know it would be the worst feeling imaginable, but I try to think about it. How would it happen? How would I live in this apartment? What would it feel like to lie in bed without him next to me? Even when he's asleep, or confused, somehow physical presence means so much more than I ever expected. Would I be able to breathe without him? I like to think I'm a strong person. I try to imagine how I'd live day to day. The answer is, it would hurt, every minute, as I imagine it must for so many people who have lost someone. I feel guilty for even thinking about it.

I think about him getting better, too. I focus on it, meditate on it, pray for it to happen. It's just so hard to see. Pain is so much easier to imagine than happiness.

I want him next to me always, but I also want him to live. Much greater than my fear of losing him is my fear of him holding on just for me. He deserves so much better than this life.

I began to type a sentence about how if I lost Jon, I'd lose my belief in magic. But the truth is, as angry as I'd be, as angry as I am... WE are magic. Our love is magic. So it must exist. I'd be a hypocrite to say it doesn't.

My birthday was yesterday, and although I refused to blow out any candles or really celebrate, I did make wishes. I wished (as I do every 5 minutes) for Jonathan to get better ... to have a life... for both of us to live the life we deserve. I wished for strength. Lots of it.

On my last blog, Jonathan commented "Bring it on, 2012!". He was ready to fight and so I will take my place beside him and keep fighting.

We can't have everything we want. Sometimes, we simply have to believe.”
Garth Stein, The Art of Racing in the Rain