Wednesday, November 14, 2012

Another Miracle

Most of the time I am impressed with how far I’ve come.  I can think about Jon and talk about him, even talk about difficult memories, without breaking down into tears.  It’s the moments that come over me out of nowhere, the intense feelings that hit like a ton of bricks.  It’s the times when I remember, all over again, the tragedy that occurred in my life.  A miracle and a tragedy – all wrapped into one, too-short love story.

I sit here, clicking through picture after picture . . . each a piece of our journey and I can see my own reflection in the background of the computer screen.  And every so often, I have to remind myself that these pictures I’m looking at, are of me.  I was there.  I was with Jon.  He was here.  We did this, we did that, we were happy.  Sometimes I still don’t recognize that girl anymore.  Or maybe this girl . . . I’m not sure.  It feels like a lifetime ago, and in some ways, it was.

This girl is happy.  Happier than I ever imagined I’d get to be again.  And every single day I am surprised and grateful for the gift of true love . . . a gift I have received not just once but twice, in my 26 years on this planet.  A treasure I thought I would only experience in memories for the rest of my life.  A blessing I was sure I’d only get once in a lifetime.  A miracle that I thought began and ended with Jon.

I know, with every part of me, that he had a large part in my second chance.  He never wanted to leave me.  He was more afraid of that than dying. Knowing Jon, who he was as a person, and the immense selfless, unconditional love he had for me, I am sure he decided if he could not physically be on this earth to love me for the rest of my life, then he’d pick the perfect person to do it.  And knowing the way he truly knew me, he recognized that this love had to go above and beyond, because I was SURE and 100% convinced I’d never experience that kind of love again.  He knew it would have to be special.  It would have to be right in front of my face.  It would have to be intense and ‘you’re-an-idiot-if-you-don’t-get-it’ easy.   It would have to include no room for doubt, and also no room for comparison.  He chose someone who was completely different than he was in so many ways, yet so wonderful in so many of the same ways.  He picked someone who would be able to give me so many of the things I wanted in life that he could never give me himself.  He also chose someone who would never attempt to write a song for me . . . he wanted to keep the upper hand there.  Haha He chose someone he knew would love me the way he believed I should be loved, and most of all, someone I could love back just as much. 

Maybe this all sounds sort of far-fetched.  Perhaps you think I have a false sense of grandiosity.  Maybe it sounds like I think I’m some special case.  But the truth is, I don’t.  I just know how Jon felt about me.  How he saw me.  And I will never stop wondering why.  Why he picked me . . . why he loved me as much as he did . . . what he saw inside me.  And what I did to deserve that kind of love . . . and why I’m somehow worthy enough to be loved like that again. 

I have seen enough terrible things happen to good people to know that not everyone gets a second chance.  Not everyone gets “rewarded” or blessed after facing heartache.  Sadly, that’s not how life works.  But in my heart, as hard as it is to find reasons for things, I believe there are reasons.  I was meant to be by Jonathan’s side for the rest of his life . . . but by some twist of fate, he wasn’t meant to be with me for the rest of mine.  I will never understand that, but I have to believe, he does.  I like to imagine he has perfect clarity now.  That he can understand everything.  That if anyone knows my future, if anyone sees a plan laid out before me, he does.  I hope he’s with me, guiding me along the path I should be on.  Scratch that, I know he is. 

I wrote a blog a long, long time ago about my difficulty believing in God and committing to religion.  I wrote that LOVE was my religion; because it was the only thing I could feel when I closed my eyes . . . the only thing I could have absolute, unconditional faith in.  That continues.  LOVE is my higher power. 

I miss Jon constantly.  Mostly I miss his presence, what he brought to this world, and my life.  Sometimes, I miss who I was before he left.  We were so hopeful, so convinced that we could take on the world.  I hate that I’ve experienced such a loss, and whether I like it or not, I know it has changed me as a person.  I guess we are all shaped by our experiences – good and bad. 

I am thankful.  For the miracle that was my time with Jon, for the personal angel I know is always with me, for the belief and strength that relationship brought me, for what I’ve learned and how I’ve grown as a person.  I am thankful for that love story. 

I am grateful (and excited) for this new love story.  For this person who was sent to me, who understands who I am, why I am who I am, and who loves me in a way that I pray everyone gets to experience at least once in his or her lifetime.   He is everything I could ever hope to find.   I was handed another miracle. 

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Thursday, September 27, 2012

To Live Again

I haven't written in quite some time.  I think it's because there is just so much to say that it's difficult to write without jumping all over the place.  Jonathan has been gone for almost 8 months.  Sometimes it seems like a lifetime ago.  Sometimes it seems like yesterday. And sometimes there are moments when it feels like I am re-living it all over again.  Those are the moments I hate.

I often think of Jon and it brings a smile to my face.  I am so grateful, so thankful -- in ways I cannot put into words -- for knowing him, for being loved by him, for all the memories we shared, and all the ways he shaped who I am as a person.  In the moments of post-traumatic stress when awful memories flash across my mind, I get angry.  Those are not the moments I want to remember.  That is not how I want to think of Jon.  That sense of dread, sadness, and sometimes sheer panic... I know those are not the feelings Jon wanted to leave me with.  Thankfully, those moments have become fewer.  Over time, the happy memories, the heartwarming thoughts, have slowly but surely taken over and replaced many of the thoughts I'd rather not remember.

I miss my friend.  I miss his laughter, our inside jokes, our silliness.  As in love with Jon as I was, I think the foundation of everything was our friendship.  He knew me so well and losing someone who was so in-tune to who I am as a person felt like losing a piece of myself.  I often find myself wishing for his advice.  There were some dark moments throughout the course of the last 8 months when I was angry at him.  I felt like he had let me down.  I felt like he had abandoned me.  I would pray and ask for his advice, for answers, and I felt like I wasn't getting any.  Until... I did.

My life has changed a lot in the last few months.  I find myself smiling more than I have smiled in a very long time.  I have found happiness and a sense of calm completion that I was sure I'd never experience.  There is no doubt in my mind that Jonathan has everything to do with it.  This person who is the reason for my happiness is undoubtedly one of the best people I have ever encountered in my 26 years on earth.  And I am unbelievably surprised and grateful for the chance to be this happy.  As I've said in previous posts, I was convinced I'd live the rest of my life feeling like I settled.  Like it would never be as good as it "could" have been.  But I don't feel that anymore.  For the first time in a long time, I'm excited for the future.

I don't know why I am this lucky.  I don't know if I deserve it.  But I know I will cherish every second.  I know that Jon would want me to be happy.  Knowing that for a fact allows me to jump headfirst into this new-found happiness.  It allows me to soak it up, enjoy every second, and allow love to surround me.

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Sunday, July 29, 2012

Sweet Surprises

As aspiring ballerinas, one of the greatest skills we were taught was the art of balance.  My teacher would demonstrate how to center ourselves.  She would help us place our arms in the correct position, and sometimes have us close our eyes.  It wasn't just about not moving or falling to one side; the real skill came from learning how to essentially use your own body to stabilize yourself.  By using our own muscles and strength, but making sure not to tense-up, we developed a fair amount of stability in our own bodies.  Without holding onto anything at all, we held ourselves up.

Sometimes I close my eyes and try to find that skill again.  The world has been way too shaky for my liking.  And there seems to be little I can do except to try not to fall over.

Things have gotten so out of focus that the things I've been stressed about, I've come to realize, are not even the things I should be upset over.  I lost Jonathan almost exactly 6 months ago.  I've let myself hurt, and cry, and feel that unsettling realization, but lately, so much nonsense has somehow overshadowed it that it sets me back.  My nature is to take care of people.  Obviously, in my role as a pediatric oncology nurse, it's not only my nature, it's my job.  But I tend to do it outside of the hospital as well.  I want to help.  I want to be there for people.  I want to "fix" things.

People tend to come to me with their problems, and for the most part, I'm happy to help.  Trust me, if I care about you, there is nothing more important to me than your happiness. But there are times when I allow myself to be put second.  And the truth is, I don't want to do that anymore.  My therapist says I'm "magnetic".  I'm not sure if that's something a therapist is supposed to say, but she did. She says she gets why people are drawn to me.  And I love that people talk to me, or want to.  And I don't need someone to take care of me, but it might be a nice change of pace for a little while.

I've been disappointed a lot lately -- in the world, in people, in myself, even.  I'm not always the person I want to be.  I don't always live up to the standards I hold others to.  But I've been let down in such a way recently that has certainly shaken up this balancing act.  When I believe in something, especially a person, it becomes my religion.  There is nothing that can make me change my mind.  If I love someone, there are very few things that person could do to make me change how I see them.  I'll put up with a lot.  I'll make excuses.  I'll give the benefit of the doubt.  It takes a lot for me to open myself up completely.  (Vulnerability is not something I like to show to the world.)  But when I do, it means everything and my heart is exposed. I know I'm not perfect, but I deserve for someone to believe in me, too.  Not having this particular friend to hold onto surely makes staying upright even more tricky.  But I'm managing.

I have also been surprised lately.  There have been moments of sweet surprises and exceeding of expectations.  (And 'Happy Birthday-flavored' Oreos) And it reminds me that there is goodness in life.  Those moments that make your heart happy... they will never cease to exist.  No matter how many times your beliefs are crushed or how many people disappoint you, there will always be those times when your faith is renewed, and those select few who surprise you and don't let you down.  Bad things happen.  Everyone knows that.  We all have our stories.  But they don't define us.  It's what we do after.  It's how we recover. It's how our hearts say to our brains, "hey, I'm still here.  I still work."  It's whether or not we listen.

"Be soft. Do not let the world make you hard. Do not let the pain make you hate. Do not let the bitterness steal your sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place." <3

Wednesday, July 11, 2012

Some Kind of Wonderful

There were moments after Jon died when I was so afraid.  I was afraid of the rest of my life.  If I had already had something so wonderful, so beautiful, so extraordinary... if I had been loved that much, in a way most people never get to be loved, what were the chances I'd get to have that again? What were the chances I'd ever experience happiness like that again? The future looked like one big let-down.  And though I wanted to believe I'd fall in love again, that I'd have the life I'd always hoped for, there was a part of me utterly frightened of living a life always knowing it 'could have been' better.

What I have learned is quite the opposite.  No one will ever be Jon, and that's okay.  That life, our life together, is over.  It will forever be etched into my heart and preserved in my mind as a beautiful memory.  It will be the thing I am always grateful for.  And he will remain a part of me for all eternity.  But experiencing that kind of love, knowing it exists, only makes me want it more.  Only makes me believe in it more, and believe in other people, in connections, in friendships... in everything.  It makes me more open.  And being loved in the way Jon loved me -- completely -- makes me recognize my own worth.  A very wise woman who experienced an all-too-similar scenario said to me recently, "I get to have him be a part of my being and confidence in such a concrete way that most women our age don't ever get. We aren't desperate, we aren't t self conscious, we know we are worth loving and that our love is worth giving because we have been loved by real life angels that had no reason to HAVE to be with us.". (Thank you for that, Bahar) :)

I know what I'm worth, I know what I deserve, and I want to have it all.  Jon loved me fully, completely.  He made me a better person, and accepted my flaws.  He knew me in a way most people never will. 

 I think little things are what make people beautiful.  I think their quirks and understated unique qualities mean everything.  Like the way they laugh or how their eyes sparkle, or the funny way they say a certain word.  I look for those things in the people around me -- those special things that maybe no one else will notice.  And I think that's why I love so intensely and quickly.  I see past what other people see pretty fast, and fall in love with what makes them special.

I can picture myself in so many different situations that it's hard to see where I want to end up.  I'm city and beachy and maybe a tiny bit country.  I'm sensitive.  I take things to heart.  If I care about you, I will do anything for you.  I'm devoted.  I'm bratty.  I'd pick salty snacks over sweet any day.  I'm passionate.  I can eat pickles right out of the jar.  

I HATE when people say "calm down". It actually infuriates me.  I hate tomato juice.  I'm obsessed with sea turtles and owls and animals in general.  Daisies make me smile.  I think roses can be boring unless it's one perfect, non-red one.  I have hundreds of lip glosses, but barely wear any.  I used to think my stuffed animals had feelings and I'd take turns putting them on my bed so none of them felt left-out. 
I can't sleep without a blanket on.  I can fall asleep pretty much anywhere.  I love unique one-of-a-kind things.  I fully believe in the magic of dream catchers, the bracelet that I was told will protect me from evil spirits, and the ring I wear that symbolizes endless possibilities.  Sometimes when I'm walking down the street and a little bird pops out, I think he's saying hi just to me.  (Snow White complex?).  I sing "Part of Your World" from The Little Mermaid in the all the time... since I was 4 years old. My parents say when I was a kid I'd never go to sleep because I was afraid I'd miss out on something.  Cheez-its are amazing. I've never seen Star Wars in its entirety (I know, I know!).  I think I was meant to be a mom.  I'm pretty judgmental of how other girls dress, carry themselves, laugh... ok I guess girls in general.  But it's mostly because I expect more from my gender, though I can't say I've never disappointed myself.  I can rap "Gimme the Loot", either Biggie or Inf's part (thanks, Bon!).  Coldplay and an iced coffee make me reminiscent of college.  I think dogs are guardian angels.  I think the nicest thing we can do for someone is to let them know we thought of them.  I like to be thought of. :) 

When a moment is important to me, I memorize it... every aspect. And I can play it back in my head as if I'm there.  Like when Jon told me he loved me, or Katie said "I still have a sister", or when my mom gave me a matching angel necklace when I was 8 so "we'd always be connected" or the way my dad got choked up at my high school graduation party.  I notice the way someone says my name.  I remember songs playing in the background. I find it hard to believe in coincidences.  I don't know how to say more than a few sentences without incorporating some form of sarcasm in there.  I think a lot can be felt in a simple touch.

I think I come across as pretty confident, but I'm actually self-conscious. . . a lot.  I have a photographic memory.  School always came fairly easily to me.  I wanted to be a ballerina. . .  I sort of was one, at least an aspiring one.  I had modeling pictures done. . .  once.  (Only 3 people have ever seen them).  I obviously enjoy compliments about my physical appearance, but I secretly fear that I attract guys simply because they think I'm "hot" or want to get in my pants.  I want someone to notice the way I say their name.  Or the different color specks in my eyes.  I want someone to not be able to control their own laughter when I laugh.  I want someone to notice the beauty mark on my right cheek.  I want someone to look at me with pride in who I am.  I want someone who is thankful for how much I care for them. 

I think having a partner to go through this life with is a blessing.  A teammate, someone you can count on.  Someone who makes you a better version of yourself.  Isn't that what we all really hope for? 

I fear no fate.  I'm not afraid of anything anymore.  My heart is open.  I've known more truth and felt more love than most people ever feel in a lifetime.  I know who I am.  I trust my heart.  It's never been wrong before.

Sunday, July 8, 2012

Nobody Knows

There are things that no one knows.  Things that even if I write them down, you'll never understand exactly what I mean, or what that particular moment was truly like.  It's a burden of sorts, that I've described in previous posts.  The person who shared each of those moments is gone.  And I can't help but feel like half of a whole at times.

It's not all bad.  There are wonderful things.  Things that words cannot begin to give enough depth to.  The way I was loved, for instance, is beyond words.  But to have that taken away, seems to me, might be more horrible than never having experienced it.  That's the negative side of my mind talking.  I know I was blessed. I know how lucky I was.  But it still doesn't seem fair.  And that's because it's not.

Do I sound like two different people in this blog? Sometimes that's what it feels like.  I'm excited about life, I'm positive, I feel lucky to have known such a love, I'm ready for the next chapter.  I recognize my worth.  Then other times I'm just sad.  I miss my best friend.  I feel like the rug got pulled out from under me.  I can't help but feel some bitterness for the pieces left behind in the aftermath of an incredibly difficult time.  All the energy -- physical, mental, emotional.  In other words, I tried SO hard.  And I know there was nothing else I could have done, but sometimes, it all seems so futile.  So much effort.  So much belief. So much hope. So many physical tasks, mental breakdowns, and so much unconditional love.  So much beauty wrapped in so much pain.  Wishing with every breath for things to get better.  It was tiring.  It overtook everything I did, overshadowed every thought.  But then it was all over.  

A few days before he died, Jon said he wasn't ready to leave me. He said he'd "be fine".  He told me I could go to work and school and he would just wait for me at home.  He said that was enough of a life for him.  And it broke my heart to look at him and hear him say that.  I would have traded my own life for him to have the chance for a better one.  If I could have taken some of the pain, some of the nausea, some of the disappointment... if it meant he'd have one good day where he could feel good, and run, and play basketball -- I wouldn't think twice.  And I mean that, even now.  I wanted so much more for him, for the both of us.  And we promised each other we'd never allow the other to settle.  And there he was, dying, looking at me saying he would be content just to wait for me to get home from work.  It was the end.  I feel like we both knew once the words came out of his mouth, that there was no going back.  I sometimes wonder if that's when he allowed himself to give up.  In my weaker moments, I wonder if I allowed him to, and if it would have made a difference had I taken my usual "no -- you're going to get through this" position.  But instead, I shook my head and let the tears flow.  

There are things that nobody knows.  There are flashbacks that pop up unexpectedly in my mind... things I must have blocked out.  And I wonder how I'm still able to breathe.  It's so silly, but there is so much guilt in my heart.  When I was still working, Jon was my main concern...and I have such guilt for leaving him at home while I was at work.  And so much resentment for not having been able to focus on anything but the intense anxiety over why he wasn't answering my phone calls or getting in touch with his doctor to figure out the next step.  When I was out of work on leave, I was frustrated at how difficult it was to do everything.  I did everything for him out of love, but I couldn't help but feel angry at the overwhelming task at hand.  I think I was more frustrated at the fact that I couldn't fix him.  It was pure powerlessness.

I learned to anticipate his every move.  I could tell when a seizure was coming sometimes minutes before it would happen.  I understood what he was asking for even during those horrifying times when his words didn't make sense.  I would wake up the second I felt him stir during the night.  I hooked up hydration.  I heated up egg drop soup and easy mac. I washed him and changed his clothes, put his deodorant on, lotion on his skin.  I cleaned and clipped his nails.  And numerous other tasks that annoyed the hell out of him. 

I remember one night getting so frustrated at him because he wouldn't answer me when I asked which ice cream he wanted.  He would look at me and say "yea", when I called his name, but then not respond.  At first I thought he was just being his usual day-dreamy self, but it occurred to me when I let it sink in, that he could not understand or formulate the answer.  When he stopped commenting on sports games we were watching, I was terrified.  I told myself it would pass.  It was a side effect of the radiation.  It was this, it was that... it was never the end.  Until it was.  And I tell myself I'm only human, but there are moments when I wish I could go back and be more patient, more loving.  I know I gave him my all, though.  I hope he knows that.  

There are things nobody knows.  How we talked about having "genetic all-star" babies.  How we had secret hand squeezes. How we frequently told each other complete sentences with one look.  How when I'd come home from work we'd "Team Shower" (sorry for any family members reading this -- TMI).  How we always went to sleep spooning.  How we ate Chick-a-rina soup at least twice a week.  (Both of us grew up with it as our FAVE -- soul mates for real.)  How we made fun of literally, everyone we knew... out of love, of course. ;) How our first fight was over face book.  How he used to not like public displays of affection (that changed, real fast).  How we said I was him with a vagina, and he was me with a penis. How we both said we wished we'd never met anyone else or been in any other relationships simply because they didn't compare.  We'd say, "If I knew you were coming into my life..."  

He taught me about basketball -- watching it, players, trades, March Madness brackets, and even how to shoot.  We once played at the JCC after a concert event.  We snuck off to the gym and I was in a dress and heels.  When he was about to shoot, he stopped, looked at me with that look that always made me melt into a puddle and said "My girlfriend in tights -- there is a God."  He taught me about The Beatles, musical terms (flat, sharp, pitch, etc), the combination of mayo & mustard = heaven, how to throw a football, how to wrap a wrap so it doesn't fall apart, Lox bagels, Mac computers, Photo Booth, beer pong technique.  He showed me how to love unconditionally, how to be a better friend, how to fight without yelling (not great at that), how to calm myself after a panic attack, how to be a sister (seester).  He taught me that lullabies weren't just for children. 

There are moments nobody knows.  Like the silly dances we'd make up in the kitchen while making omelettes. Songs about stick butter.  Songs about windy beach days.  Songs about balls and other things that would make 12-year-old boys giggle.   I'll never forget how he looked at me the first time I got dressed up.  Things like that are forever recorded in my mind. 

Sometimes the sound of his voice makes me smile.  Sometimes it makes me burst into tears.  Usually a little of both.  I wonder if and when that will ever change. And then I wonder if I even want it to.  

I once covered Jon's entire bedroom door and walls with yellow post-its.  Each one had a different inspirational quote, or phrase about love, or inside joke.  I just wanted to reassure him that I wasn't going anywhere, and even when I wasn't with him, the post-its would do that for me.  (They are still hanging).  I could use some reassurance.  At a time when so much has changed, so much has been broken.  Every little disappointment seems like another loss at this point.  

There are things nobody else knows.  Things I will keep in my heart forever.  Some I will try to forget, or at least remember less.  I can say with certainty that I was lucky.  I can say without a doubt, I knew another human being like he was another part of me -- an extension of my heart.  But nobody knows what that love felt like.  Nobody knows what that disconnect felt like when he was taken from me.  I knew so much of Jon's heart.  I wish I had a chance to know more of it.  I wish I could have seen him on our wedding day, or as a father, a grandfather.  Those are the things no one will ever know.  And what I will always miss deep inside my heart.  

Was I worthy of such a love? Of Jon? I'm not sure.  But whatever it was that made him love me, I hope I still have some of it left.  I know I carry him with me, and that's the best part of me.  <3

Sunday, July 1, 2012


I'm not sure why people like to read my blogs.  I guess some of it is curiosity -- they want to see how I'm doing.  Whatever the reason,  my wish is that I'm able to provide some hope.  Whether it is hope for love -- because I'm pretty sure I can prove it exists; or hope for strength -- because I like to believe I found some of that, too.  Or maybe, more specifically, hope after a loss.

You don't get over losing someone.  I will never "get over" losing Jon.  I can guarantee that his family and close friends would have to agree.  But in the very beginning of this journey through grief, I wasn't convinced I'd survive.  It's not about being suicidal or anything like that, although I'm sure many people struggle with those thoughts, too.  It's just that the pain is so intense.  The emptiness, the constant state of missing someone, that void -- it's almost physical.  It is by far the worst thing I have ever experienced.

It's weird because that loss is still overwhelmingly present, and I can't say it's necessarily gotten "better," but humans are resilient creatures.  We adapt.  It sounds really cold to say it that way, but we somehow learn how to live a new life.  The hole is still there.  We learn to walk around it.  Inevitably, no matter how much time has passed, no matter how good we've gotten at maneuvering around that hole, sometimes we still fall in.  But the difference is, now we're able to climb out of it, usually on our own.  Occasionally it helps to have a hand pull us out.

And so, if you're currently experiencing a loss, I am so sorry for you.  I can't tell you it will get better, but I can tell you you will learn how to survive.  That doesn't make you miss them any less or diminish how much they shaped your life.  I'm no expert, but I think the best thing I did for myself throughout this entire ordeal was to allow myself to be sad.  I let myself break down, even at times when it wasn't convenient or even if it didn't make sense.  Sometimes you need to let yourself feel the weight of your loss, or at least as much as you can tolerate.  Otherwise it sneaks up on you and it's twice as heavy.

There were moments immediately following losing Jon where I was "proud" of myself for not being "a mess".  But who cares? Be a mess.  We all deserve that.  And the people who love you will love you anyway.  The truth is, it's not something to be proud of.  I was numb in those moments.  It's a defense mechanism.  And it's only lately that I feel like I emerged from that darkness.

I like to believe Jon sends me inspirational things.  It very well could be just me finding more beauty and inspiration in the world, but I like to think he has a lot to do with it.  The sunshine when it feels extra warm sometimes.  He sends me ladybugs and butterflies who insist on landing on me for longer than normal periods of time.  And birds.  Birds were always a thing for us.  Right after I first met him, I was walking home one morning while it was snowing, and I saw two pigeons snuggling and 'kissing'.  I know pigeons aren't the cutest birds around but for some reason it made me happy and reminded me of Jon.  I texted him a picture of those birds.

In our apartment, we loved hearing the birds outside our window.  Since Jon died in February, birds seem to always be around.  There's one who stays perched outside my kitchen window all day.  In Paris, a bird ate out of my hand.  And at the park, they hang out by my blanket (even when I don't have food).  Maybe it sounds bizarre, but it's comforting to me.

There are times when Jon's voice is so loud and clear in my head that it's almost as if he's standing next to me.  I know how he'd react to most things.  It makes me smile when during certain moments I think about what sarcastic comment he'd make if he were there, or dirty joke.  It makes me sad when something happens that I know he'd be angry about or frustrated.  It's difficult to watch people close to him make choices that I know he'd talk them out of.  If only he could give us advice every once in awhile...we'd all be better off.

Jon was other-worldly.  It's the only word I can use to describe him that fully depicts how truly one of a kind he was.  As connected as we were (are), sometimes I don't even understand why he chose me. I don't have low self-esteem, but God, he was just SO good at everything, in every single way.  He was so much better at life in general than most people, including myself.  He had his faults, of course, but even his flaws were perfect to me.  I legitimately loved the things I hated about him.  And I like to think he felt the same about me.  

I find myself re-reading my blogs and knowing Jon could say it so much better.  When I talk to his family or friends, sometimes all I can feel is this inferiority, knowing if Jon were here, he'd make a better joke or have better words of comfort.  There is a comfort in surrounding myself with people close to him, but at the same time, I know they are just wishing for him to be there... just like I am.  I'm not Jon... and maybe sometimes, in some ways, I am the closest thing to him... but simply put, I can't compare.  He shined. What I wouldn't give to stand in his light, simply smiling at him, laughing at literally everything he said.  The most flabbergasting thing to me is I know he thought I lit up the room. He thought I shined, too.  How lucky I was to have someone look at me that way.

When Jon and I first started to become serious, he told me that he had spent an extraordinary amount of time "in his head" after he was diagnosed and while he was getting his initial treatment.  He felt like he had learned so much about himself and grown so much.  He told me he learned how to be alone, and he didn't want to do it anymore.  That's where our expression, "get out of your head" came from...which later became, "get out of my head" because we always seemed to know what the other was thinking.  I never really understood what he meant until recently.  He's been gone for just about 5 months now, and I have spent an extraordinary amount of time in my own head.  Maybe our darkest moments are when we grow the most.  

I miss my friend, so very much.  It boggles my mind to think that I'm only 26...that I have so many more years (hopefully) of living to do. I do think my heart is more complete having been loved like that.    I think I know myself better because someone loved all of me.  

I am far from perfect.  I hope someday, if I'm very lucky, someone will love that about me.  <3

Wednesday, June 27, 2012

iPod Shuffle

I constantly have my headphones in.  It's a weird obsession. I've always liked music, especially songs that make me feel something, but lately it's more than that.  I don't want to be alone with my thoughts. Maybe the music drowns it out.  Granted, I pick music that suits my mood and whatever situation might be going on...but I hate even walking down the block alone without my iPod on.

I think I'm doing ok.  I mean, it doesn't really get any easier, but at least I feel like I can feel.  I miss Jon as always, but I find myself missing him in different scenarios than before.  I obviously miss everything, but my life is going on.  And so I find myself missing my best friend... the person I feel like would have all the answers and advice I need.  There is this overwhelming feeling of abandonment... I find myself feeling sort of angry that he's not there and he's left me to fend for figure out this already challenging life without him.  I know it's not his fault, but I can't help it.  Sometimes I want to just yell out his name and ask him what the hell he thinks I should be doing.  I believe he's with me.  He sends me signs and reassuring thoughts, but in all honestly, it's not enough.

It's amazing how life goes just keeps moving.  It's amazing how resilient the human heart is, even though mine was shattered into a million pieces, it's still hanging on.  The human capacity for hope is astounding.  We all desperately want to believe in something.

At work, we can be pretty quick to judge parents who are "unrealistic" about their chid's prognosis.  But after going through this experience, I get it.  It's not that they don't get it.  I knew all the facts about Jon's prognosis.  I heard it when the doctor said it was only a matter of time.  But with every step forward, with every "good day" or improvement, my hope was renewed.  I don't think our hearts let us accept defeat until it is absolutely inevitable.  I couldn't truly accept it until his heart stopped beating.  And it's not because I wasn't smart, or realistic... it's because I had to hold it together until there was nothing left to believe in.  I could not have fallen apart before there was a true reason to.  People who haven't gone through something like this will never understand what I mean by that.

And so I'm still here.  I'm trying to figure out what that means.  My heart still works, which is reassuring.  But having gone through something like this, it makes it so frustrating to watch people just float through life...never rocking the boat, never taking risks, never challenging others or themselves.  There is SO much life out there to be lived.  And some of us, like Jon, never get a chance to live it.

I'm not who I was 5 months ago, that's for sure.  But I know what love feels like.  I know how to give my heart away, and how to cherish someone else's heart like it was my own.

No lesson in this life can be greater.  And so the next person I give my heart to is luckier than he'll ever know.

Sunday, June 17, 2012

I'm Alive

What sums it up is this: If I had dreamed up someone to be in my life, i'm pretty sure he'd be just like you.  So when you look at me and see me smile and want to know what I'm thinking, now you'll have an idea. (3/2010)

I wrote the above in an email to Jon less than a month after we met.  The night before, I had asked him why he liked me and he had given me a 15-minute profound list of reasons while he played with my hair.  He was always good at words and the way he spoke made me lose my breath.  He listed things about me that I didn't even recognize in myself.  He didn't say the usual -- 'I think you're pretty and smart, etc.'  He told me things like, my eyes had "their own light."  I've never forgotten that night.  I've never been so surprised by someone.  I could literally feel myself fall in love with him.  Not necessarily because of the things he was saying, but the simple fact of how he saw me.  The simple fact of who he was.  I've never felt more vulnerable than at the moment I knew my heart was completely in his hands.

I looked through an old email I'd sent after we got bad news for the first time.  I went on and on about how I believed he would be okay and that we would be okay.  I listed the reasons why and summed it up by saying there's no way God would be cruel enough to take him away from me.  I said the universe wouldn't do that because then I wouldn't believe in anything anymore.  It's painful to read those words now. And strange in a way, because I DO still believe . . . in everything.  

I think our hearts only let us feel a little grief at a time.  If we felt the true weight of it all, we'd collapse. And so we become numb in between.  There's a tremendous sadness in that numbness.  And I've only recently started to come out of that.  I obviously felt the pain, the loss, the despair from the first moment.  But those were the only emotions I really had room for in between trying to function in the world.  Lately, I've realized I can feel other things, too.  I can laugh and genuinely feel happy.  I can feel pride, I can feel goodness in people, I can smile at happy memories, and most recently, I've come to the realization that I might even be able to feel love again. 

The true depth of the realization that Jon is never coming back is still something that is unfathomable.  It is something I re-feel again and again.  But I think my heart (and brain) is gradually beginning to understand.  And I've started to become myself again... and recognize my own worth in this world, without Jon and not defined by the trauma I've been through.  I am someone separate and apart from Jon (though he will always be a part of me). . . separate and apart from this loss and all the preceding difficulties.  I'm still everything that Jon loved about me.  I still exist, and to put it in the simplest terms, I'm still alive.  

And that's both tremendously difficult and incredibly inspiring. 

Jon is gone from this life.  And I believe some day, some way, somehow, I will see him again.  Maybe he's my soulmate in every sense -- perhaps we've been together in multiple lifetimes.  Whatever your beliefs are (and I'm not sure about my own), I know we remain connected.  But, he is no longer "living".  And I have a chance to.  And I know he wouldn't want me to waste a second of it.  As far as I'm concerned, there are no rules, there is no normal.  I want to do what makes me happy.  I want to make other people happy.  The rest will work itself out.  

Sunday, June 3, 2012

More Good Stuff

“In that book which is my memory,
On the first page of the chapter that is the day when I first met you,
Appear the words, ‘Here begins a new life’.” 
― Dante AlighieriVita Nuova

The same is true for the day I lost Jon.

Tomorrow starts a new adventure for me.  This trip to London and Paris came along at the perfect time.  My coworker (and friend) Erin was nice enough to invite me to tag along on her long-planned vacation.  She is the nurse who actually formally introduced Jon and I.  For that (and many other reasons) I will always love her.

I'm so incredibly excited.  I've wanted to travel to Europe for a long time.  And since it was pretty last minute I had to switch what felt like a million shifts at work -- but somehow it all worked out.  Maybe I'm meant to be on this trip for some reason.

 June is obviously a difficult month, and I know traveling to another country will not necessarily make it less difficult, but it will be an incredible change of scenery.  More than that, it serves as a reminder that there is more beauty in my world, and that more adventures lie ahead.

In a sense, I hate going on with my life. Some days it feels impossible.  Every morning when I open my eyes I have to reaffirm that Jon is really gone.  I do know for sure that he wants me to live... I know he'd be SO excited for me to be going on this trip, and he's probably smiling at Erin right now, so thankful she presented the opportunity.  God knows I wouldn't have done the work myself.  :)

I am slightly apprehensive.  Every change is difficult.  Every new move I make seems like a challenge, and as much as this is a vacation, it is another thing I'm doing without Jon, in this new reality that he does not exist in.  Hard to explain, but I feel like some of you will understand.

I will take him with me in my heart, but that goes without saying.  I know that on the way home I will still be wishing for him to be there waiting for me.

Whenever the two of us would get too focused on negative stuff,  Jon and I would often say, "Nothing but happy memories from now on." Or "more good stuff."  It was our way of redirecting one another (and sometimes both of us) away from harping on the bad, and recognize what we were grateful for and all the good that surrounded us. Sounds cheesy, I know.  Here's to the first of (hopefully) many adventures, with Jon's love with me every step.

Au revoir.  Cheers to more good stuff! <3

Il n'est rien de réel que le rêve et l'amour. (Nothing is real but dreams and love)

Thursday, May 31, 2012

If Life Were Fair

If life were fair, tonight would be completely different.  I'd be excitedly preparing for my wedding tomorrow, and probably stressing over something ridiculous like bouquets or napkins.  Knowing Jon and I, we wouldn't spend the night apart.  We'd probably stay up talking, anxiously awaiting the next day. Joking about our crazy relatives, silly friends, and saying we can't wait for the honeymoon.  We'd talk about the future we had laid out before us.  We'd practice saying my new full name.  We'd go to sleep spooning, smiling, and knowing that the wedding, big or small, really came down to us.  We'd know that the whole world would melt away as we said our vows.  

If life were fair, SO much would be different.  We never asked for it to be completely fair.  I mean, we accepted Jon's illness.  We thought that was enough.  It makes me angry to think about all we went through and still didn't get the ending we wanted -- which was no ending at all.  

But here I am.  Walking around every single day with the enormous weight of the truth -- life is truly not fair.  Jon is NOT here. And we will never get what we wanted.  

I can sit here and lament all that was taken away from me, all that could have been, all the happiness we WOULD have had together.  I can be angry that I met Jon and knew true love only for it to be stolen from me.  And I do get mad.  I do cry, often at weird times.  But the place I always come back to is appreciation.  It may sound weird, but I was loved by an angel.  

People always like to exaggerate the goodness of people after they die.  "Oh so and so was just the best."  But the funny thing is, with Jon, it's actually true.  He was THAT amazing.  He was THAT special.  And we loved each other THAT much.  I don't really know how he existed. I've never encountered someone with so much talent in so many different areas, with such sweetness, wit and intelligence, not to mention a beautiful face and a smile that could light up any room.  He had a confident ease about him. He calmed people down with his presence.  You had no choice but to laugh at his jokes.  Even when we argued, I could not help but love him.  The passion between us was undeniable.  I was impressed by him, simply in awe.  And he loved me.  

This path that I'm on will never be what I imagined.  But I do know I will try to fill it with as much happiness as I can.  I know that someone like Jon existed.  I know that a love like ours was real.  I will never be ok with anything less than everything.  I would rather never love someone again than settle for anything less.  

6.1.12 will always represent a dream.  The day we planned for and talked about.  It was the first step toward the rest of our lives together.  It will always remind me of what might have been.  Maybe we wanted it so bad to prove that we'd make it...that we could have a future.  That we were winning.

I have no question in my mind that Jon was my other half.  A big party wouldn't have changed a thing.  He wears a wedding band that represents our commitment to one another...that we belonged to each other.

In one of our earlier emails, Jon and I talked about bad things happening to good people.  He said he was very aware that that happened and so he never felt singled out by the fact that he got sick.  He said it made him not want to believe in God though, which of course made him feel like we were sort of alone in the universe.  We discussed which was worse -- to imagine a God who allowed these things to happen or worse, made these things happen, or to believe we are completely on our own.  We never really reached a conclusion.

Losing Jon has certainly rattled my already skeptical faith.  But I do believe SOMETHING brought him into my life.  And for that, I am forever grateful.

Love was our religion.  It was always hard for me to "feel" God's love, like they taught in all my years of Catholic school.  I never grasped the idea that God was always with us, though I wanted to.  It's ironic but it's so easy for me to feel Jon around me.  I can feel his love.  I believe in it wholeheartedly.  It is the one thing I have unwavering faith in.

The tattoo I just got on the side of my wrist is the word "Love" in Jon's handwriting (traced from a letter he wrote me a long time ago).  It means many different things to me.  It obviously serves as a reminder of Jon's love for me, the love between us, but it also is reminder of our belief that love was the answer to almost every question.  It also reminds me to love.  I took such a risk loving Jon.  It was worth it.  The word etched into my skin will remind me to never hold back out of fear.

Jon and I discussed having children often.  He was afraid of leaving me alone with babies (we were always pretty realistic about the possibility).  But we decided, they were better off having him as their father even if he wasn't around for long, than most kids are with dads who are around their entire lives. I told him that I was proud because I'd be able to tell our daughter (or son) someday that true love really exists.  I'd be able to tell them firsthand.

I don't know where this path is headed or who will be beside me.  But I do know for sure that I will still be able to, without question, impart the knowledge of true love to my child someday.  Being loved the way Jon loved me will shape every move I make.  It has somehow made me a calmer, stronger person.  I am a better version of myself because of having Jon in my life.

I wish with all my heart I could wake up and the last 4 months would just be a terrible nightmare.  To have such beauty, such possibility in front of you and then to have it grabbed out from under you, is perhaps one of the most soul crushing experiences I'd imagine one could face.  But our love serves as a protective shield around me, softening the blows of such tragedy.

Tomorrow will be difficult.  So will the next day.  But somehow, the good still outweighs the bad.

"I LOVE you with a love beyond love. And with every single part of me, I love you completely." -- JHS

Monday, May 21, 2012


"There is an ache in my heart for the imagined beauty of a life I haven't had, from which I have been locked out, and it never goes away."

This quote really struck me.  It's been almost 4 months without Jon.  I've been wondering why it seems lately it's almost been harder for me than in the weeks immediately following Jon's death.  I think there are a lot of factors, the major one being this: I was supposed to be getting married in 10 days.  

Jon and I used to joke around about teleporting.  We would often be at the hospital after a long day of treatment, and we'd look at each other and one of us would say, "Ugh, I wish we could just teleport home." I feel like I've teleported in a sense.  This life that I'm living, feels like another dimension away from where I was.  That's not to say I don't have happiness in my life -- I do.  The ache that comes with missing Jon has just become a pain I am growing accustomed to.  It's ironic in a way.  Jon dealt with so much pain because of his disease, and we talked about him having to "live with it" and "deal" with it for the rest of his life.  We had stopped searching for a cure, and were coming to terms with "living with it." Jon never wavered. He accepted the aches and pains he felt in exchange for being alive.  I was always in such awe of him.  How could he be that strong? He rarely complained.  Pain was just a part of life for him.  And now I know that I will feel the pain of missing him for the rest of my life -- it's just a part of life for me.  If he could deal with so much, with so much strength and integrity... and if he loved me as much as he did... the least I can do is find my own strength.  

The reality of all that has happened still seems so unfair.  June 1, 2012. I talked about the date so often.  We mailed Save the Dates, we picked out the members of our bridal party, I had my wedding dress.  The band, photographer, and venue were all picked.  Deposits were in.  Priest and Rabbi were on board.  We decided that 6.1.12 would be our code for everything.  When we had a house someday, we decided 6112 would be the garage code.  When Jon was confused in the Emergency Room one awful night and could barely answer questions, the doctors were unconvinced that he recognized anyone.  With tears in my eyes I asked him, "Jon, what's our garage code going to be?".  After a 10 second blank stare, he whispered "6112".  He knew me.  He always knew us.  From that moment on I promised to never listen to anyone's opinion again... I knew Jonathan better than anyone.  I could feel in my heart that he always recognized me, that he always carried "us" in his heart, regardless of how confused he might've seemed.  He may not have known where he was in that moment, but he knew he had me.  And he knew our garage code.  

We had our life all planned out.  Wedding in June.  Start trying to have kids in the winter. Finish graduate school next May.  Move to Westchester or somewhere else with grass. Love Love Love.  The rest we'd figure out.  

Now, the canvas is blank.  I don't have ANY idea what my future looks like.  The image of "normal" has changed so much.  Though I can't tell you what decisions I will make, I have decided to live according to the following principle: Do what makes you happy.  I don't care what I should be doing, or what the most practical thing is, or what people think, or what is normal.  I care about making myself happy... and making the people I care most about happy.  Not to be cliche yet again, but life is TOO short.  We put things off, put dreams on hold, act according to the norm, and life keeps moving, it never stops to wait for us.  If you're lucky, your 5-year-plan works out the way you imagined.  But sometimes, things happen.  We lose people we love.  People who should have gotten to do amazing things and had the ability to change the world are taken from us.  

 I personally believe Jon has had a hand in a lot of things that have happened in the last few months, in my life and in the lives of the people closest to him.  I like to believe he will continue to play a part in helping guide my future.  Regardless of what your spiritual beliefs are, or whether you think that just sounds crazy, you should know that no matter what, Jon will play a role in my future, if only for the fact of how he shaped the person I am.  My heart is big.  I know I will love again.  I can sit here and say I won't, but that's just not who I am.  I don't have any idea what that love will feel like or look like ...  but knowing I have the capacity to keep loving -- things, animals, people, life -- is comforting.  But I shouldn't be surprised.  Jon wouldn't have left me alone in despair.  He knew I would be okay... more than okay.  I just have to remind myself of that from time to time.  

I would love Jon all over again. Knowing what I know now, feeling the hurt I feel, I would not change a thing. In fact, I'd tell him I loved him even sooner than I originally did, (although he may have gone running in the opposite direction at that point lol) because the fact of the matter is, I knew.  Why do we wait? Why do we analyze everything so much? LOVE should be, (and based on experience, IS) the simplest thing in the world.  You either love someone, or you don't.  And you're either willing to love someone, or you aren't -- but even if you aren't willing, you still love them.  LOVE is a fact.  

I wouldn't wish tragedy on anyone.  I hope none of you ever have to know the pain of living with your heart broken because of the absence of another person.  But I do hope people will start to live like they've been forever-changed.  I hope something sets off a spark inside of you that makes you live better. It took me loving and losing Jon to realize so many things about life.  And maybe I sound cliche, or overly emotional, or dramatic.  I don't expect everyone to understand.  I also can't sit here and say I understand the key to living.  I'm a mess sometimes.  I definitely do not have it all together, not in any way, shape, or form.  But the foundation is there.  I know the foundation of everything is love.  

I've gained so much from knowing Jonathan, and from being loved by him.  He revealed so many truths about me. I've learned things about myself, including strength I never knew I had.  He taught me to be more patient (still working on that one).  He helped me realize that when I'm yelling I don't make any sense.  He helped me to see that sometimes when I'm being bratty or unreasonable, I'm really just sad or worried about something completely unrelated.  He taught me about loyalty and trust in a way I never knew before.  It is typical that we take out most of our anger/frustration on those closest to us... we push those people away as hard as we can.  Jon never left my side, no matter how hard I pushed.  And in doing so, he taught me to trust the world.  He showed me that unconditional love exists.  He taught me how to make a really good omelette.  He taught me how to share.  He showed me that it was possible to love EVERYTHING about someone  -- including things you hate.  He brought out a smile in me that I'm not sure I will ever have for anyone else.  He taught me to stay calm. (Working on that one, too.) He brought a sister into my life.  He gave me a love and appreciation for music that I never had before.  He made me like basketball, which makes my boy patients think I'm way cooler than I actually am.  He made me love myself, just a little bit more.  He made it so that I will NEVER settle.  

I don't think it needs to be said, but obviously if I could have ANYTHING, it would be Jonathan, next to me, healthy.  I would trade in 100% of the so-called knowledge I've gained about life.  I would give up all the strength I've built.  I'd give up everything. But that's not how life works.  And I can hear Jon's voice in my head, egging me on, encouraging me to keep going and to truly live.  

6.1.12 is just one of many days that won't be lived the way I originally imagined.  Yes, obviously a wedding is a big deal, but 6.2.12 is just as hard. As is 6.3, 4, 5 and so on.  The next hundred million days are hard...because they will never be what they "should have" been.  Jon and I used to say we'd love each other until the"year 4001."  If I've learned anything it's the following 2 things: 1) No amount of time would have ever been enough or made it any easier to be without him.  2) I will love Jonathan way longer than the year 4001. 

So things don't always turn out the way we plan.  That doesn't mean there won't be more important dates in my life. Or beauty, or love.  It just means Jonathan's memory and all that he is will go with me.  In my heart.  In my DNA.  I am forever-changed.    

Tuesday, May 15, 2012

When It Rains

For the most part, I think my blog posts tend to end on a positive note.  My thoughts tend to resolve that way as well.  People always tell me they are impressed by my strength and my fortitude throughout this entire ordeal.  They tell me I'm so "positive".  And maybe I am.  But in order to reach that positive place, I first have to sift through all the negative.  In order to remember the happy, I have to wade through the abyss of sadness.  This happens over and over again, pretty much on a daily basis.  It's a process that I don't really share with many people.  So when they ask me how I'm doing, and I say "the best I can", it's the complete truth.  The good memories with Jon completely outweigh the bad, but the hard stuff was harder than I can ever really put into words.

Maybe the hardest part for me is that a lot of the difficult stuff Jon and I faced, was faced by the two of us alone.  And so without him here, it often feels like there is no one left who really gets it. Don't get me wrong -- we had help.  His parents, my mom, his best friend, Dan, his other friends, Katie, the list continues...but at the end of the day, it was the two of us.  And when he was confused, it was really just me.  And so sometimes it feels like I am left to carry those difficult memories on my own.  I know there are plenty of people willing to share the weight, but it's really not something anyone can truly understand.

I have shared a lot in terms of the bigger events that occurred.  Jon's death, for example.  And as detailed of a description as I gave, the truth is, no one was there except me.  I know I did everything I could have for Jon, and that includes NOT doing anything during the last hour of his death.  I respected his wishes, and every decision we made, or I made, was done with pure love.  But that doesn't make it easier to know I literally watched him die... every moment in that process -- although as peaceful as I could have asked for -- will stay with me for the rest of my life.  Having to call his mother.  Having to call his doctor.  Having to call his best friend.  Trying to dress him after he died so he wouldn't be in boxers when his family arrived. Arguing with the paramedics who, hours after he died, questioned my intentions because we didn't have a DNR in the apartment.  Picking out the shirt he would wear in the casket.  Hiding in the bathroom while the funeral director carried his body out because I couldn't bear to watch that.

But there are so many other things people don't know about.  Our daily routine became so far from normal, but I tried to convince myself (and other people) that it was just a bump in the road -- that Jon would recover, and things would return to the way they'd been.

When Jon began having numbness/weakness in his left leg, we figured it was a side effect from the chemo.  Watching my tall, strong boyfriend's leg completely give out was horrifying.  But I was able to help him get back up, and so we went about our lives, adjusting as usual, to whatever new obstacle we were faced with.  We walked more slowly.  He would lean on me a little.  And then it became a lot.  The last few months, I either walked beside him, most of his weight leaning on me, or behind him with my hands on his waist, guding him and making sure he didn't lose his balance.  Again, I told myself, and Jon that he would get stronger.  We decided on physical therapy, nutrition supplements, anything we could think of ... never talking about the possibility that this may not get better.  My back was killing me.  I told him to put as much weight on me as he needed to, and he was pretty thin at that point, but it was difficult for me.  When I was still working and then dealing with that, my back was pretty much shot.  But I never let him think he couldn't rely on me.  I would have done anything to make him feel safe -- to make sure he wouldn't fall.  Once, he lost his balance and despite my best attempts, both of us hit the ground outside our apartment building.  My arm was throbbing, but I got myself up, somehow got him to his feet, and we continued.  It is amazing the strength love gives you -- both physically and emotionally.

The first time Jon had a seizure, it was the Tuesday before Thanksgiving.  I had just gotten home from class.  Jon had been at the clinic with his mom all day getting chemo, and she had just left the apartment.  Jon was in the bathroom, and I suddenly heard a crash.  I ran to the bathroom, but the door wouldn't open. I called his name, but all I heard was him moaning.  I assumed he had fallen and hit his head or somehow gotten seriously hurt.  I could see him through the crack of the door, on the floor, his leg blocking me from opening the door.  I started yelling, "Jon,  I know you're hurt but you have to move your leg, I have to get in. Please, just move your leg so I can get to you."  Somehow he did, and as I rushed in and tried to help him up, I could tell something was seriously wrong.  He couldn't answer my questions. His body was trembling.  I was unable to get him to his feet and he was breathing strangely.  The first thought in my head was "seizure," but I didn't really know what to think.  I grabbed my phone and called 911.  Then called his doctor.  Then his mom.  Then sat there with his head in my lap, crying and screaming, "please be ok, please be ok, please be ok..." over and over again.  I quickly got up to grab a bag to throw some stuff into (as I assumed we'd be staying in the hospital).  Jon started to become more alert, and was eventually able to sit up.  By the time the paramedics got there, he was able to answer questions, but appeared confused.  And then everything changed from there.

That was one of the worst nights of my life.  It was probably the first time I ever truly feared I might lose Jon.  I remember so many bittersweet and horrible memories after that point.  Jon not being able to stand up without wrapping his arms around my neck and having me pull him up.  IV fluids at home, a crazy medication regimen, attempting to control his pain, anti-seizure medications that only worked for a few days before we'd have to increase the dose.  Jon not eating anything except easy mac and egg drop soup.  Jon not being able to answer questions.  Trying to get him from the apartment to the hospital for clinic visits.  Him fainting and having a seizure outside of the hospital, and in the lobby of our apartment building, and in our apartment on New Years Eve.  The stupid inexperienced doctor who told me Jon had a brain bleed and tried to call neurosurgery.  Jon being confused and agitated while trying to get a CT scan.  The unsympathetic tech who tried to tell me I couldn't go in with him.  The nurses in the ER telling me I would be "blessed" because of everything I did for Jon. And yet I still believed things would get better.

I don't think I let myself fully see Jon's deterioration while it was happening. Now, looking at pictures it's so clear to me how sick he really became.  And I'm amazed we had as much time as we had.  I know it was nothing short of a miracle that he came back to me for a month after being so confused.  But I will never forget the faraway look in his eye when he didn't know what was going on. I will never forget him trying so hard to sing, but being completely off tempo and forgetting his own lyrics. I will never forget the look of pain on his face when the headaches were at their worst.  I will never forget the sadness in his eyes when we talked about saying goodbye. I also will never forget the love in his eyes that was present throughout it all.  Or the sweet smile he gave me after I got my haircut a few weeks before he died.

My planner from 2011/2012 is filled with chemo dates, scans and doctors appointments.  When we started one medicine, when we changed to another, each seizure, each blood transfusion... And in addition to that, when the rent was due, when the cable and electric bills were due, food shopping, picking up prescriptions and getting the laundry done, not to mention attending class when I could.  I was a busy girl, and somehow, I did it.  Now it seems like the simplest things are so challenging.  I guess I need a break.

And after I reflect on all of this, I am able to remember the good things.  I hope one day, the good things will be at the forefront of my memory, rather than buried beneath so much hardship.  In the beginning of our relationship, Jon and I talked about the day when all this cancer stuff would be nothing but a bad memory.  We swore we would then work so hard to replace every bad memory with something good.  Well, I have more than enough amazing memories with Jon to do that.  And I know Jon would want me to continue making happy memories, and cherishing every happy moment.

"The human heart is made from the only substance in the universe that can be made stronger, after it's been broken." <3

Saturday, May 12, 2012

Find what you live for

I've always believed in signs.  Very few things are coincidences to me; most occurrences have meanings.  When I lost Jon, I was convinced our bond, our connection would continue.  I thought I'd feel him around me every single day... that he'd find ways to send me messages or dreams to help guide me along this horrific process.  I've shared with you a few moments I have experienced in which I really felt Jon's presence, but what I may not have communicated is that overall, I've been sort of disappointed.  It started the moment I knew he was gone.  It was such a profound feeling of loss.  Of emptiness.  And the undeniable truth that he was no longer there.

People always told me that they thought Jon and I were extremely connected.  We even had a few strangers come up to us and say we just looked like we belonged together.  (One being a random xray tech). And they weren't talking about physically.  It was just a fact.

I haven't had any dreams since about two weeks after he died.  I feel Jon within me -- in the ways that he changed me, and the person I am.  I feel him when I'm laughing at something I know he'd crack up at.  I feel him when I'm excited because the Knicks just won.  I feel him when I know a little bit more of what to say to a patient I'm taking care of, simply because I have watched someone go through it firsthand.  I feel him because he is a part of me.  But as far as spiritual encounters, so far I haven't experienced much.  I was in the shower earlier this evening and set my iPod to shuffle (which I never do).

Out of 796 songs, the first one that came on had no real meaning to me.  When it was just about finished, I thought to myself, "Jon, please send me a 'Jon song'."  Three seconds later, the next song to play was "City Lights" by Jon and his band Almost 6'6".  Out of 796 songs, 19 of them are Jon's band.  Coincidence, perhaps.  But regardless, it was exactly what I needed to be reminded that Jon is present.  That he hears me.  That was incredibly comforting, and also heartbreaking.  He can't be that far away, can he?

Take a look inside yourself
cuz deep down ya know there's no one else
decide who u wanna be
cuz no ones ever gonna let you be

This new reality. This new "normal"... it's not easy to get used to.  It still shakes me to the core and catches me off guard sometimes that Jon is not coming back.  Though I know it every second of every day, sometimes the simple thought of it is enough to bring on a sudden flow of tears.  I'm starting to realize this isn't going to get easier.  It's just a part of me.  It's a part of everyone who loved him.  And we are all just trying our best.

I know what I had.  And I appreciate it more than I can explain.  I don't think most people get to experience love like that.  So I wonder if I'll ever be loved like that again.  I don't say that to be dramatic or to look for pity, I just don't know what the odds are.  Then again, I never was one for statistics.

No one will ever be Jon. And that's okay.  I don't want another Jon.  If I could have Jon, himself, then obviously there's no question.  But I'm a different person.  I look at life differently.  I look at myself differently.  I hope there is is someone out there who will love me even half as much as Jon did.

I know that going through what I went through doesn't necessarily give me license to say whatever I want, but sometimes it's so frustrating to be surrounded by people who don't appreciate what they have.   I am severely bothered by people who settle, by people who don't see their own potential.  I am so utterly impressed by people who take chances.  I am disappointed in people who act like they have all the time in the world.  Jon and I always knew there was a possibility of tragedy in our story -- and so maybe that's part of why we tried to appreciate our love a little bit more.  We had our moments, for sure, where we acted petty or childish and took one another for granted.  And looking back, I wish I could have treasured every moment just a little bit more.  It will never be enough.  And I will never get those moments back.  But what I know for sure is, he knew he was loved.  And so did I.  And that kept us going through so many difficult moments.  In our silliness, we called it a "love forcefield", and as funny as that may sound, it was.

There was never a time Jon was standing in front of me where he couldn't see the love in my eyes.  We were generous with our kind words, with our "I love you's", with our hand squeezes and knowing looks.  And when we fought, we fought hard...and always ended up back on the same team in the end.  I'm so very proud of us. And I wish, with all of my heart people would take our story and change the way they live their lives.

You don't get handed love every day.  Connections don't form easily.  I think coincidences are far less common than we lead ourselves to believe.  Take a moment to realize what's around you -- what gifts you've been handed.  Focus less on doing the "right thing", or what people might think, and listen to your heart.  There's a reason it beats fast sometimes . . . you can't use your mind to rationalize your way out of those feelings.  Tell people how you feel -- out loud.  Don't hold grudges.  Hug tightly.  Think less, feel more.  Yell.  Cry.  Laugh.  Hold onto the people who keep you sane.  Recognize it when you find the person who makes you whole.

Yes, Jon and I knew our time was threatened.  But isn't everyone's?

"Find what you live for . . . "

Saturday, April 28, 2012

Jonathan the Fearless

Tomorrow morning is the Hope & Heroe's Walk for pediatric cancer.  Although always a cause near and dear to my heart, this year is obviously incredibly different.  As captain of Team Jonathan the Fearless, I will lead close to 40 people in light blue t-shirts on a walk in Jonathan's memory.  I was pretty excited when I started organizing this walk.  It felt like such an amazing way to honor Jonathan and the struggle he faced.  In addition, the foundation raises money for the clinic where Jon was treated, as well as many patients and families I have grown to know and love over the years.  It was never really about the money for me, but the generous donations we have received could truly change lives for children with cancer.  For me, it was more about the "team".  The people closest to Jon -- the ones who loved him most -- joining together to remember him.  Jon was so worried he would be forgotten.  If he is looking down on us tomorrow, he will surely see how silly that notion is.

The truth is, I carry Jon with me everywhere I go.  I don't need a t-shirt with his name on it or a big organized walk.  Every step I take, every action, every movement toward a future for myself, I do with Jon in mind.  I know that the family and friends closest to Jon understand what I mean and live their lives in a similar fashion.

As tomorrow morning draws closer, I find myself feeling angry and sad.  I wish things were different.  I mean, I wish that every second of every day.  I wish Jon and I could walk together.  I wish we could walk in remembrance of the struggle he faced, the battle he had won.  He deserves to be here.  He should be here.  I can't seem to let go of the anger I feel for the fact that he's not.  I constantly feel the world moving forward, myself included.  It doesn't stop moving.  It's a strange thing, actually.  But most moments echo with the thought that Jon should be here for this.  For everything.  Accepting over and over again that he won't be, is the hardest part for me.

I appreciate the support that surrounds me.  The love that surrounds Jonathan and his memory.  I've said it before, but Jon brought some of the best people I've ever come across into my life & I feel lucky in that aspect.  I know there will be tons of people I can count on tomorrow -- to lean on, to hug, to laugh with.  We're all hurt.  We're all angry.  We're all sad.  But we're all better people for having known Jon.

If we can keep moving forward... if we can carry that piece of ourselves that Jon brought out in us, the part he made better... then he will truly never be forgotten.  <3

Friday, April 20, 2012

That Girl

I often wonder what Jon would be saying if he could see me.  I like to think he can see me and that he's with me. I'm just not really sure how it all works.  Sometimes it makes me sad when I look around and realize just how different things are... just how much my life and everything about it has changed. Simply put, how much I've changed.  Sometimes it feels like I'm watching myself.  There are moments when I feel like if I were still the person I was a year or two ago, I might be acting very differently.  Typed words come easily, but actually talking and opening up seems so difficult.  And if you know me at all, you know that I'm a very open person.  I guess since losing Jon, it feels like a difficult task to open up my heart, to say words aloud.  When I do, I'm often overwhelmed by how many emotions flow.  Maybe it's easier to just stay closed up a bit.  I feel like I have trust issues... I don't really see why.  I mean, Jon himself never betrayed my trust.  If anything, he exceeded any expectations I ever had about relationships.  But I can't help but feel a little betrayed.  By life. By the way things turned out.  Maybe on some level, even by Jon.  He promised he would never leave me.  I know that promise was forced out of him after much pressure, and it was made with both of us knowing it was un-promisable, but it still feels like betrayal nonetheless. It is unbelievably hard for me to let people in who were not around before... people who don't know that part of my life... that part of me.  I feel like what I've been through has shaped me so much as a person.  So profoundly in fact, that I don't think anyone can understand who I am without knowing who I was.  

I do feel Jon around me, just not in the ways people might expect.  As much as I could never have been prepared for losing Jon, he did make some fundamental truths known to me before he died.  He made it absolutely clear that I was loved, that he was proud of me, grateful for me, and that above ALL else, he wanted me to be happy.  I feel lucky to know such basic yet significant things, without a shadow of a doubt.  How many people can say that? All of the emotions I feel on a daily basis, all the sadness, the questions, the anger -- I NEVER doubt how Jon felt about me and what he'd want for me in this life.  In fact, sometimes I can almost hear his voice in my head.  We were so connected, I like to think I know what his reaction would be to most things.  And although he is gone, I still feel so protective of him. When something happens that I KNOW would piss him off, I have to stop myself from fighting in his place.

Mostly I feel him around me when I'm happy.  I can't shake the feeling that if he is watching me, he is most happy when I am really laughing -- the kind of laugh that makes your stomach hurt.  There is a moment mid-laugh when I can almost feel his eyes on me, and see his face with a huge smile -- smiling because I'm smiling.  When someone is being sweet to me, or a good friend, I can feel Jon's satisfaction.  He would want me to be all of the things I was with him -- happy, loved, protected.

Watching Almost 6'6" perform is another instance when I can literally feel Jon's smile... the pride he would feel in watching them keep doing their thing.  There is nothing he would want more.  And I can't help but feel that he loves having his two favorite things -- music and love -- intertwined.

I don't always feel positive.  The anger sets in when I think about all that Jon COULD have done if given the chance.  It makes me sad that he won't write anymore songs, that he won't get to perform again.  I KNOW he should be up on that stage.  He SHOULD be next to me right now.  Those things will never change. Knowing and feeling so many positive things, as I do, still doesn't make it suck any less, or make it any more fair.  Knowing how much he loved me doesn't make it any easier that he won't get to be around to love me any longer... at least not in the way he wanted to.

But I look at all the amazing gifts he gave me.  Some of them people, most are virtues, and a knowledge of true love.

I'm not sure if "normal" exists anymore -- or if it ever will again.  I think it's just a new kind of normal.  A new reality.  And I am grateful for so many little things -- for true friendships & belly laughs.  I am thankful for those moments when I can feel Jon smiling at me -- those are the moments I know I am beginning to live again, and being the girl he fell in love with.  I always want to be that girl.

I can hear his voice saying "Get out of your head, Lace." Stop over thinking & just live.  Cherish every moment. Laugh loudly. Hug tightly. Cry when you need to. Love big. And every other cliche that exists. ;)

I never understood how I got so lucky to have someone like Jon pick me.  So I will live my life trying to measure up to the image he had of me.  If he thought I was that special, there must be some truth to it.  I like to think so. <3

Thursday, April 12, 2012

Packing Up Memories

I'm excited about moving. I know it's the right decision for me -- it felt right when I walked into my soon-to-be new place. I know I can only move so far forward in my life if I stay in the same place. But that's also what makes it so hard. This apartment is the last thing that's remained pretty much exactly the same since I lost Jon. It's the last part of our life together that I can actually hold onto. I look around my life and EVERYTHING is SO different... in more ways than I can ever explain. But I come back here and I can almost pretend my world hasn't been turned upside down.

I know Jon would want me to get out of here. He loved this place so much. It was our special, most favorite place. It represented us starting a life together. It represented the first step in the life we could have together. But it was about the two of us, and I know the last thing he'd want is for me to be sitting here, by myself, looking around at pictures, feeling sad about what used to be. Besides, he knows I will never forget Snuggle City. He knows no matter where I am, I carry him with me. It's just a fact.

The apartment I'm moving to is in the exact area where I originally wanted to move when Jon and I first decided on the city. It's also apartment 4D -- which is the same as our beloved first apartment. It may sound silly, but it feels like a sign. Or at least reassurance. And honestly, that's all I need right now. I'm a smart girl. I know when I'm making the right choice. I know I need a "fresh start", but that doesn't mean I don't hate when people say that. I think I've had a tremendous amount of clarity throughout this entire ordeal, but that doesn't make it hurt any less. Jon always knew what I needed. I can't help but think he still does.

So tomorrow I officially sign my new lease and the packing begins! Bittersweet to say the least. This girl I've become -- the one forever changed by loving, being loved by, and losing Jon -- will just take have to take it one step at a time. Ok, a lot of steps -- up a 4th floor walkup -- but one step at a time, nonetheless. ;)

"The more you love a memory, the stronger it is."