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.    

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