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 . . . "