Thursday, April 8, 2010

A Keeper

oday feels like a good day to really introduce my boyfriend and, at the same time, try my best not to embarrass him ;) As I mentioned in my earlier post about Muscular Dystrophy Camp, I was 16 when I first volunteered. I'd say going to MDA camp was the best decision of my life, thus far. Not only did it set me securely on my career path, but it brought some of the greatest human beings into my life. When I met John during my first summer, he was immediately on my mind and that's pretty much where he's stayed ever since.

John became involved with camp mainly because of his two sisters, Sara and Laura, who both have a form of Muscular Dystrophy called Friedreichs Ataxia. I had a long term high school boyfriend at the time (who also volunteered at camp), so obviously I never acted on my feelings for John. He was just special and it shone through in every interaction. Watching him dance with his sisters at the annual camp dance (see the photo on the right) was what did me in - let's just say it was the biggest crush I'd ever had. After camp, though, I always headed back home to Long Island and John stayed in Rochester. Eventually he started college in upstate New York and a year later I was at school in central Maine. At our age, we were worlds apart, but still kept in touch here and there. He was my buddy...the kind that made me nervous just to think about...but a buddy nonetheless. Even then, I knew he had one of the best hearts I'd known so, no matter how long we went without talking, I never forgot about him.

Over the years, I met my share of boys and had another long relationship in college. I wont go into details, but at the end of it all, I was left believing I'd never find someone with the strength or capacity to care the way I could...or a guy who could handle the challenges of my illness. I got to a point where I felt there just wasn't a match for me and couldn't imagine trying again. I truly didn't want to. It was Senior spring and I was finally getting used to the idea of being alone. I spent a lot of time with my own thoughts that year which was crucial to knowing my own strength. It was just me and, for once, I came to a point where I was fine with that.

And then, without warning (like most great things), John came back into my life. We started talking consistently around my 22nd birthday that year and haven't stopped since. He was spending that first year after graduation in Washington D.C. doing research at the National Institute of Health, while I was still in the wilds of Maine. Logistically it made no sense at all. But still, we talked. We talked every night for anywhere from 1 to 6 hours.

I always knew I liked John, but I never knew the connection we could have. We both were just shocked by how unexpected and easy it was and it didn't take long at all before my walls started coming down. A few weeks in, I made the first real move and told him how I felt (brave, I know!). I figured, hey best case scenario? What we have now.

John bought a ticket to see my a cappella group perform in Boston and visit his friends about month later, but the more we spoke the more we both realized the great thing we had found. Funny how we had waited years, but suddenly it was impossible to hold out just a few weeks. John called me up out of the blue and said he wanted to book a flight for that weekend too. It was pretty surreal - suddenly preparing to see my now boyfriend who I hadn't seen for over three years - not to mention the romance factor. That kind of storybook stuff just didn't happen. At least not to me.

Before I knew it, I was off to pick him up at the Portland Airport. I had an hour-long drive to let reality sink in and, as I got closer, I remember feeling like my heart would pound right through the seat belt and out of my chest. But then I saw him waiting and he looked as great as ever. Flustered beyond belief, I stopped my car in the middle of the jetport (smooth move) and he was just as suave walking right through a puddle without noticing. We were two nervous goofballs, but it was just right and that first kiss made it all real.

After that, the feeling was something like coming back to life. We spent most of the weekend talking with goofy smiles plastered on our faces. On Saturday we went to "The Breadbox", Waterville's finest restaurant, and we both said it was then that we knew we were in love. I, for one, had never been more sure of anything

I visited John in DC that Spring and it only got better. He also came back up north a few more times that Spring and made a point to be at my graduation in order to meet my family (who all loved him instantly). He helped me move out and drove me back home to my parents' house on Long Island where I lived for the next year. Shortly after, John chose to study at a Medical School close by and the rest is history.

In relation to my illness, John makes me feel like so much more than a Spondylitis patient. Even on my worst days, it's just not an issue. It never has been. Never once have I felt I was disappointing him by changing plans or being worn out and there's just a level of understanding between us that's hard to put into words. He always makes the trip down to the city for me since he knows it's tough on my body to travel. It's the subtle things like that, really, that mean the most. He is one of the most empathetic people out there, which will of course make him an amazing doctor, and he always finds ways to make my life better. Of course, I try to return the favor.

On more than one occasion when I worry that Spondylitis will keep me from being the consistently strong partner he deserves, John reminds me that my illness just a part of me - part of what's made me the person he loves. It took a while to let that sink in, but now I know what it feels like to be unconditionally loved in return. It's hard to put that into words. Above all, though, John is just my best friend and yes we have to work at it just like any other couple, but we only learn more about each other as time passes. My family adores him and I truly feel like part of his (see the photo on the right). They've all been nothing but loving and totally welcoming from the start and, while there's much more to say about those Ferrarones, for now it suffices to say they're a profound gift in my life.

I've got a keeper, wouldn't you say?


  1. this makes me melt. I will watch your dogs when you go on vacation 40 years from now and Im still alone. hah

  2. Thanks for making me cry before work. WAY TO GO MAYA. Jeeeez...!! Lovely and beautiful as always! ox Olivia

  3. awwww thanks guys! Kayla, you'll find your John and we'll walk each other's dogs.

    And Olivia you're too sweet - your encouragement means the world

  4. I loved that story!!!
    Blessings to both of you, Dana

  5. AnonymousMay 08, 2010

    Hi Maya,
    After years of pains, my husband was diagnosed with AS about 6 months ago. Lets just say it's a bit hard for both of us. It gives me a lot of hope to read about you and your partner - thank you so much for sharing.
    Kind regards

  6. Thank you so much for your post. The bright side of getting diagnosed is finally figuring out why the pain was there all along. I know you two can make it - just keep talking and being there for each other. If you need any advice, don't hesitate to reach out.

    All my best,

  7. Maya, You are such a gifted writer, hi everyone I am John's gramma, he is just as wonderful as she says he is. Of course I am prejudiced BUT she is just as brave and wonderful!!!!! They are a really great couple and I am very proud of them.