The Story Of Our Engagement...

Hi my wonderful readers!

John and I are home from our perfect vacation, settling into our new apartment together, and basking in the glow of being newly engaged. We might be back to reality, but the excitement remains. I thought I'd share some more details, since you've all been so awesome and supportive about this step in our lives.

Although John and I discussed getting engaged by the end of 2011, I can honestly say his proposal took me by surprise. For the first time in over a year, he had a week off from his medical school responsibilities and I was thrilled to be taking a mini vacation to East Hampton, Long Island. My parents have a teeny beach house on Gardiner's Bay and, since we've had some wonderful times there over the years, it seemed like the ideal getaway for 4 days and 4 nights. We arrived on Wednesday night and planned to have my brother Josh and sister-in- law Erica join us on Friday for the holiday weekend.

On our first morning, we were determined to catch the sunrise from start to finish - an experience I can now check off my annual bucket list! There's nothing like it, really. As the first light peaks through, the still water is illuminated. Suddenly you're just part of the morning scene: the gulls swooping down for their breakfast, the grazing deer and her fawns among the dunes. I'm infinitely inspired by the wild beauty out there and our deck is one of my favorite places in the world (something that John knew, so being engaged there was even more special).

Since we finally had time to breathe, I felt closer to John than usual. We were laughing more than usual and, throughout the day, he was saying the sweetest things. We even took a long mid-day nap together, simply because we could. As I rested my head on his chest, I remembered thinking things don't get much better than this. I would soon be proved wrong. When we woke up, we set our sights on dinner. My mom had been kind enough to make some great reservations for us (something you must do on July 4th weekend), but John suggested we try getting into  Dave's Grill, one  of the most popular restaurants in Montauk. Anytime we'd tried dining there, they've been booked for months. However, on that evening there was somehow a recent cancellation. We were all set for 8pm!

At that point we hadn't yet walked on the beach, so I suggested taking a stroll together. We got dressed, I grabbed my red pail (to collect beach treasures, of course), and we were off. That beach is hard to describe - it's wild and rocky and, as you're walking along the shoreline, you get the sense that you're the only people in the world. It's also deemed one of the most important ecological locations on Long Island, as it's home to unique and endangered wildlife. In retrospect, I was being such a kid that day...running from pretty shell to pretty shell and skipping stones on the bay. During that walk, John found a gorgeous white stone that the sea had tumbled to perfection; a memento that I would soon write the date upon in order to symbolize the best day of my life. As we reached the water, John took my hand and started saying all kinds of beautiful things. We held each other closely and kept walking, but I started sensing that he was nervous about something. For a split second, I honestly wondered if he might propose, but I quickly pushed that thought from my head. After all, it was too early.

And then came the bugs! Swarms of horseflies arrived and interrupted our romantic moments (bugs are definitely the biggest downside to living in such a wild area). We were slapping them off of ourselves every few seconds and decided to return to the house. On our way back, we skipped some stones and John amazed me with his skills. Eventually we made our way through the tall grasses and back onto the porch, where I displayed my shells on the railing. The sun was beginning to set on our first day and, as I turned toward John, I saw him kneeling over something. He said, "Hey Maya, come look at another shell I found!" As I approached, I saw something shining and, as cliche as this may sound, the world actually seemed to stop in that moment. Already on his knee, John looked up at me with a huge smile on his face and simply asked, "Will you marry me Maya?" I'm sure I don't need to tell you what I said.

 Like many girls, I've dreamt of that moment for most of my life, but when it's actually upon you, it's inexplicable. For three and a half years, I've known that John was the one I wanted to spend my life with, but now we were truly looking toward our futures...together. Once I calmed down and stopped shaking, I took a good look at my gorgeous new ring - a treasure that once belonged to John's great grandmother. She was engaged in 1926 (the same year the ring was purchased) and all I could think of was the history that I now had on my finger. I was honored to have become part of a beautiful family tradition. I couldn't love it more. We proceeded to excitedly call our family and closest friends, which is when I first realized that our parents were in on the secret. My sneaky fiance had driven down to Long Island the week before and asked both of my parents for my hand in marriage. I absolutely love that he did this and it meant so much to my family.

As we recounted the events of the day, we laughed as John explained how his various plans were foiled. Initially he was planning on proposing as we reached the water, but the horseflies kind of ruined the moment. We were annoyed and distracted by those little buggers, so he decided to press on. While I was skipping a stone on our way back, John's "Plan B" was to be kneeling as I turned back around. At that same moment, I exclaimed, "Ew! Gross! There's a tampon applicator in the sand." I'm not sure I've ever found a piece of trash on that beach, but naturally it would be in the same spot where John had begun kneeling (haha). He quickly stood back up, realizing that another moment had been killed. As we retell this story, this element just makes us laugh and laugh. 

Our engagement dinner was incredible. As I looked across the table at my future husband, my heart swelled. I've written before about our story (like in this April, 2010 post entitled "A Keeper"), but sometimes it still feels like a dream. There I was, engaged to my best friend and the same man whom I've held on a pedestal since I was 16. Although the rest of the photos from this weekend are stuck on Erica's camera (she's working on it), here are a couple from John's phone. It was truly the best day of our lives.

Knowing how important my family is to me, John thought that Thursday was the perfect time to pop the question. That way we could have some time alone, but also celebrate with Josh and Erica the following night. Having people I love there to hug and toast with made the weekend that much more special. On Saturday night my amazing parents also surprised us! They drove all all the way to East Hampton just for dinner and we were thrilled to see them there, hiding behind their menus. And just like that, we had a little engagement party! We dined at East Hampton Point, an incredible restaurant with one of the most amazing views imaginable.  My mom even joked that they had ordered the sunset just for us. We laughed and reminisced and even caught some fireworks across the harbor.

More pictures to come soon, including one of my gorgeous ring. Thank you all for sharing in this special time in my life! I couldn't ask for more.

Love,

Maya

Summer Fun & A Weekend In The Woods

Summer is finally in full swing and I'm thrilled to report that my body is keeping up with all of my plans! I just got my monthly Orencia infusion last night, so hopefully it will get even better now! The weekend before this past one was spent at John's family's cabin in the Adirondacks - one of my favorite getaways. John's dad built the cabin completely by hand and I'm consistently amazed by its beauty. It's nestled in a serene spot right beside a beautiful river. You can even hear the water running as you're falling asleep. Undoubtedly, this is one of my favorite sounds.

I spent some wonderful and much-needed quality time with John's parents (Margaret and Bob), his sisters (Sara and Laura), his cat George and his sweet pup Belle. We had perfect weather the whole weekend and enjoyed basking in the sunshine together. As always, Margaret was so thoughtful and cooked me delicious gluten-free meals, separate from the rest of the family. Between my vegetarianism, my gluten-free diet and my various stomach issues, I must be the world's most difficult house guest and it means the world that she cares to accommodate me. By night, we roasted marshmallows around a big fire and watched movies, including Uncle Buck (which I could watch a million times).

I also recently travelled to Boston to see my best friends! I stayed with Vicki (one of the best buds a girl could ask for) at her adorable new studio apartment. We enjoyed a very relaxing weekend of girly activities and hanging out with friends. I saw lots of Colby girls and explored Cambridge and Harvard Square. I'm always enthralled - and occasionally terrified - by the street performers in Harvard Square (I'm thinking mainly about a life size marionette). We ate some fantastic food, including a brunch at a vegan/gluten-free restaurant. This is where I discovered that I love scrambled tofu eggs - who knew? 

My posts will become more regular now. In between these summer adventures, I've been helping with various family medical issues. Unfortunately, I'm learning first-hand just how hard it is to watch someone you love in pain (which makes me appreciate my loved ones that much more). I've also officially moved into my new apartment with John and we couldn't be happier! We just got internet hooked up, so I'll be posting about that very soon...

Love,

Maya

Spotlight On The Inspirational Megan Smith!

I'm excited to present the latest participant of my Spotlight Series and officially expand the scope of this project past physical illnesses and/or disabilities. Meet the incredible Megan Smith! Megan and I met at Colby College where we had many common friends. Although we never spent much time one on one, I always enjoyed her presence and never heard anything but awesome things about her. 

Megan lives with Tourette's Syndrome (TS), a neurological disorder which becomes evident in early childhood or adolescence before the age of 18 years. Tourette's syndrome is defined by multiple motor tics (kicking, stamping, jumping, touching, etc.) and/or vocal tics (grunting, throat clearing, shouting, etc.) lasting for more than one year. According to the Tourette Syndrome Association (TSA), "symptoms of TS vary from person to person and range from very mild to severe, but the majority of cases fall into the mild category. Associated conditions can include attentional problems (ADHD/ADD, impulsiveness (and oppositional defiant disorder), obsessional compulsive behavior, and learning disabilities...most people with TS and other tic disorders will lead productive lives...there are no barriers to achievement in their personal and professional lives."

Megan is a prime example of how those living with this syndrome can excel in their lives and achieve anything they want. I know her story will inspire you.

What is the year you were first diagnosed? How old were you ? 

I was first diagnosed in 2003 when I was 17, although I've had noticeable symptoms since I was 4.  

What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?

Tourette syndrome is not a death sentence.  Yes, it is most likely a chronic condition that you will deal with for the rest of your life in some capacity (although your symptoms may decrease or abate in early adulthood), but you can get through it.  Learning to cope with the tics, as opposed to fighting them, is often a much easier way to deal with the symptoms.  Be creative - get regular massages to soothe the physical pain from the tics, avoid loud, crowded spaces when you are tired if you know that it will exacerbate your tics, etc.  Self-consciousness is one of the hardest things to cope with - practice explaining to people about your tics - it will boost your confidence and help get rid of that "elephant in the room" feeling.  Also, don't lower your standards just because you have Tourette's - you are just as mentally and intellectually  capable as anyone!

Please explain how your condition affects you. 

The main symptoms of Tourette syndrome are motor and vocal tics.  Motor tics are movements and can range from simple eye blinking to more complex patterns of movement (e.g. jerk head, throw arm out to side, and then snap fingers).  Vocal tics are sounds and they can range from simple throat clearing and coughing to repeating words and phrases.  Coprolalia (rude or obscene words), the symptom that everyone associates with Tourette's, is only present in about 10% of the Tourette population. 

For me, the hardest thing to cope with besides the self-consciousness and occasional shame, is the pain and fatigue associated with my tics.  I tic almost every minute of every day.  Many times, I am good at camouflaging my tics.  For example, I cough when I have the urge to say a phrase or word.  When walking, if I feel the need to squat, I pretend I am tying my shoe.  Some tics are hard to hide, and those are usually the most painful.  Head jerking, loud grunting, and arm flinging are especially difficult.

Because of this almost constant movement, I fatigue much quicker than other people.  By five o'clock I am usually exhausted and need to lie down for an hour, so that I am able to get through dinner and whatever else I have planned for the evening.  It took me a while to realize that I couldn't keep going all day like a "normal" person, which was a hard pill to swallow at first, because everyone with Tourette's wants to feel as "normal" as possible.  College was hard at times, because when people were just gearing up for the weekend, I was looking forward to the weekend so that I could sleep and prepare for another week.  I was always physically exhausted by Friday!  In addition to the fatigue, there is pain associated with some of my more intense tics.  To compensate, I take pain medication and get regular massages.  I also take medication specifically for the tics when they are really bad (there is no actual medication for Tourette's - doctors have to experiment with medications for other neurological/pyschiatric disorders, including epilepsy, Parkinson's, and psychotic disorder (no-I'm not psychotic ;-)   Unfortunately, these medications make me tired and I hate taking them as they put me "out" for a day or two. 

The disease has changed with time.  When I was younger, the tics were mainly motor.  I had few vocalizations and more motor tics - head jerking, squatting, snapping, eye blinking.  As I have gotten older, my motor tics have become less apparent (abdominal tensing, neck stretching) and my vocal tics have increased.  I have learned to cope with it and have come to realize that I will always need to make special accommodations so that I can be the most successful person that I can be.  This fact, however, does not diminish my value as a person and I should not feel ashamed that I need to make such accommodations. 

What are 3 things you couldn't live without?

I could never live without my animals.  They are a calming influence and do not judge me based on my odd movements or behaviors.  Having dogs also forces me to get out and exercise, which is really important for people with tics.

I could never live without my parents in my life.  They are the reason that I have done so well.  I continue to live with them at home and they are a stabilizing force in my life.  Although I plan to move out in a year, I know that they will always be supportive.  I believe that because my parents, and mother in particular, never let me use my tics as an excuse, I have come so far.  They always focused on solving the immediate problem at hand and never allowed me to wallow in self-pity or ask "why me?"

I also couldn't live without the opportunity to travel.  It is a passion of mine and I savor being able to experience a different language and culture.

What are you most proud of?

I am most proud of the fact that I never let Tourette's stand in my way of accomplishing what I wanted to accomplish.  All too often I see people who cannot seem to get past the fact that they have this chronic, embarrassing, and at times, debilitating disorder.  Maintaining a positive attitude and refusing to let Tourette's be the reason for not pursing a passion is essential.  I am proud that I got through college and am now on track to attend medical school.

Where do you get your strength?

My family, friends, co-workers, and pets!

If you could send one message to medical professionals around the world, what would it be?

Think about your treatment plan for people with Tourette's - medication can make a difference, but don't just medicate because it is the easiest way to help tics.  Emphasize the importance of maintaining a normal life, pursing hobbies, meeting people, forming relationships, and having fun!

Megan, I want to thank you for opening your heart up to us! You've given an amazing voice to an often misunderstood condition and you are truly remarkable.

I want to end this post by telling you all about an incredible documentary I saw in class the other day: HBO's Have Tourette's, But Tourette's Doesn't Have Me. Below, you can see a preview and learn about these incredible kids. I really recommend renting and viewing the entire thing - it brought me to tears and gave me a much greater understanding of the condition.

Love,

Maya

Sky's The Limit, If You Say So

When Chronicbabe.com issued the latest topic for their blog carnival - "I Can Do It: something you thought chronic illness would never let you do until you mustered up the courage and went for it" - my first thought was travel. I fell in love with seeing this world many years ago and, although Spondylitis has made it significantly more challenging, I've still done it. There are ways around illness, especially if our hearts are in it. I've also been lucky enough to have a family that not only values travel, but has been able to give me these opportunities over the years. 

When I wrote the post abut my grandfather's life, I recalled first visiting Europe with him and my grandmother. Together, they took our entire family on an incredible trip to Grindewald, Switzerland and Annecy, France. Not only did I get to meet my European relatives for the first time, but I also remember my love of travel taking hold on that trip. I took a million photographs and collected everything I could to bring back to the States (including a wide array of sugar packets). I loved everything about being in a new country: being surrounded by new people, listening to new languages, and just being immersed in such a different culture. Everything was fresh and exciting and there seemed to be adventure around every corner. From then on, travel was in my blood.

Attending Colby College also afforded me all kinds of opportunities, particularly in the way of travel. Through the Colby College chorale, I was able to prepare a year's worth of music and travel to Vienna, Austriaand Prague, Czech Republic in 2005 during my freshman year! My favorite moments were busking in random archways, streets, and cathedrals as impromptu crowds gathered around. Surrounded by friends, new adventures, and beautiful music, it was one of the most amazing trips of my life. 

As the years passed and my disease progressed, travel became more difficult. I was placed on a strict regiment of weekly Enbrel injections , so I couldn't just take off for weeks at a time without really considering the logistics. During "Jan Plan" at Colby (a month-long semester during January in which students must participate in something...a class, a trip, etc.), the Spanish Department was offering language credits for studying and living in Quito, Ecuador. What better way to learn the language? I signed right up!

Since I would be gone for four weeks, I had to consider how I could transport and receive my injections while I was there. Luckily, Colby was able to set me up with a wonderful family of four. Both parents were doctors and could administer my injections! This certainly put my mind at ease. They also had two awesome kids, their son Juan Carlos and their older daughter Maya (incidentally, I would affectionately be called "Maya numero dos"). I attended school in Quito during the week and used the weekends to travel. A few friends and I also volunteered at a local orphanage, which planted the seed in my head for adopting my child one day. Another highlight of the month was a four day trip to Banos - a town known for being a holiday centre, both for Ecuadorian families and for backpackers. It’s a great place for cycling, hiking, white water rafting and the hot baths that give the town it’s name. I remember taking a pretty wild bus tour around winding mountain passes, driving from waterfall to waterfall and hiking to get closer to them. It was an incredible month and like nothing I'd ever experienced before.

In 2007 when I was a junior at Colby, I had the opportunity to study abroad for an entire semester! My brother had studied in Sydney, Australia four years earlier and loved it. As the second child, I've always had an innate drive to do everything just a little bit differently from Josh....so, instead of Sydney, I decided that Melbourne, Australia was more "me." It was an awesome choice, and I spent the majority of those 5 months having new and extraordinary adventures. My favorite part was, of course, the plethora of adorable animals that live in Australia. As you can imagine, it was my heaven. Getting there with my injections (that had to be refrigerated) was easier said than done. I remember my grueling trip to Melbourne like it was yesterday: a 5 hour flight to Los Angeles, a 7 hour layover in the airport, a 14 hour flight to Brisbane, 2 days of orientation, and finally a 2 hour flight to Melbourne. Somehow I managed to protect my precious injections throughout all of it - a feat that still baffles me. 

While other American students arrived in Melbourne and immediately set out to explore the city, my first order of business was to head to the local hospital (Royal Children's Hospital) and ensure that my medication was refrigerated. Each week I would travel to that hospital which took nearly 2 hours roundtrip via public transit, but it was more than worth it. While the regimen wasn't easy to maintain, I felt great for the majority of my time down under. I was able to travel to the Great Barrier Reef over spring break which was one of the best experiences of my life! Since visiting the reef is typically a once in a lifetime sort of thing, I decided to try scuba diving. It was just as beautiful as I anticipated and I could hardly believe I was so close to this incredible, colorful sea life I'd always seen in photos. However, while I was underwater I scraped my shin on a local species of coral. Before I even reached the mainland, it promptly got infected and started to burn. Since the bacteria was so foreign to my body, the infection didn't respond to antibiotics and soon my Spondylitis reared its ugly head. I had to stop taking my injections since they suppress the immune system and soon I was in the worst flare up I'd experienced up until that point. The infection spread up my entire leg and sadly I spent the majority of my final month in bed. 

As soon as the semester was over, my parents and my brother Josh met me in Melbourne! It was amazing to see them. We travelled around Australia for several days and I was able to take them to some of my favorite spots (including the 12 Apostles). Then we were off to New Zealand! We drove around the country and made some incredible memories, experiencing  both the north and south islands. We visited Auckland, Christchurch, Queenstown (home of the first bungee jump), gorgeous Milford Sound, and Mount Cook (the highest mountain in New Zealand, reaching a height of 12,316 ft.) The beauty of both Australia and New Zealand is truly impossible to describe in words.

During the spring of that same year, I was also able to visit Italy for the first time with the Colby chorale! We travelled around the country, stopping in Rome, Florence, and Lake Como for various concerts. We sang in awe-inspiring venues, including the American Embassy in Rome, The Duomo in Florence, and St. Peter's Basilica in Vatican City! These are experiences I cherish and, just as we had done in Prague and Vienna, my friends and I often busked along gorgeous cobbled streets. As long as I live, I will never forget those 10 days. Although I was able to extend the time between my injections by a few days, I certainly began to feel the inflammation returning by the end of the trip. As much as I wanted to stay, it was a relief to get home to my medication.  Three and a half years later, I would be lucky enough to return to Italy with John and the Ferrarones ! This time, I received two Humira injections the week before leaving and it seemed to make a difference. 

What's the reason for sharing my travels in such detail? To show that, even with chronic illness, you don't have to give up on your dreams, especially if you have some awesome support. I'm sending a huge thank you to my incredible parents who gave me that little extra help and courage to make these journeys, even when they seemed like more trouble than they were worth. They were and always will be worth it...

Love,

Maya