Some old, some new, life goes on...

An individuals story is made up of their experiences.  Places they've been, things they've seen, people they've met.  Life is about experiencing different things.  About stepping outside your realm of experiences and learning about others, their cultures, and their beliefs. For me, March was filled with that.  For those of you that don’t know, my girlfriend is Irish.  I am not, yet for the first time I had the opportunity to take part in her family’s celebrations.  First came the Feast of St. Patrick, or St. Patrick’s Day, for those that are more familiar with that name.  Well, my girlfriend’s family celebrates a little bit differently.  Yes, we drank some beers (well not me) and ate some corn beef.  Yes, we sang Irish songs and danced Irish jigs (well not me).  Yes, we listened to bag pipes and drums.  And yes, all those things were glorious.  But they celebrate by marching in a parade.  The Union County St. Patrick’s Day Parade.  A real parade with bag pipers and drummers, firemen and police officers, and city and county officials.  There were jokes and laughs and good times had by all.  I think I fit in for the most part.  I wore green, acted jolly and strolled along with everyone else in proper marching order tyring to look like I knew what I was doing.  Not quite sure if it worked, but I'll practice for next year.

A few weeks later I got my first Easter basket.  Filled with Easter Eggs, chocolate goodies, jelly beans, and other assorted candies it was a diabetics dream.  In all seriousness, it was fun.  Had a great brunch and spent a great day with Meg's family.  From watching the kiddos go bonkers,  falling and crashing all over the place to find every single egg that was hidden to the endless sugar high we all felt, it was a real Easter.  Kind of reminded me of the afikoman search we used to do as kids.  For those of you that don’t know, that’s when the parents hide a piece of matzah and send the kids searching for the hidden treasure, normally for a reward of 5 dollars.  Either way, it was a far cry from my normal Easter celebration of cleaning my apartment and ordering Chinese food, but a fun experience nonetheless.  

All the while I had the pleasure of another PICC line.  The beginning of the year was a bit rough.  On and off, I experienced all the normal symptoms of a CF exacerbation – lung function decrease, sputum production increase, lack of energy, shortness of breath, etc. – the list goes on and on.  Either way, I was not feeling great and with spring right around the corner the decision was made.  My left arm would once again become a prisoner of the PICC.  IV medications every 12 hours; increased treatments and nebulizers; more sleep and rest.  A quick "tune up" and everything was back to normal.  Is it the most fun way to spend two weeks?  No.  Is it worth it so I can feel better and get back to the living the life I love?  Yes.  Well, I’m back.  Energy is back.  Bad jokes are back.  Solid runs are back.  And just in time.  Racing season is here.  First up is the Dick’s Sporting Goods half marathon in Pittsburgh followed 7 weeks later by the San Francisco Marathon.  Throw a sprint triathlon and a 5-mile race in there and you have a nice 8 week stretch of races.  So for now, head is high.  Goals are set.  Can’t think of a better way to celebrate life! 

The power to inspire

One of the most surreal things to hear someone say is that you motivate or inspire them.  That you are the reason they have the power to wake up in the morning and run.  That every time they go through something tough in life they think of you and they find the strength to get through it.  That someone considers you their hero. 

This past week I was able to hear that.  I had a wonderful opportunity to tell my story.  To give the rest of the world a peek into what I go through, what I deal with, and what I overcome every single day of my life.  I was able to show what living with a chronic illness is like; what my daily routine consists of; the pills, the nebulizers, and the machinery.  A peek into how I try my best to balance a full-time job, managing two chronic illnesses, and still finding time to do what I love - RUN.  A peek into the mindset of what it's like to live and fight and battle every single day for every single breath.  A peek into the mindset of what it's like to not know what the future holds; to not plan for the long-term; to not take anything for granted.  A peek into my life. 

At this point in time my video has close to 80,000 views.  I've received emails and notes from my closest friends, from people I haven't spoken to in over 20 years, and from people I've never met.  Never in my wildest dreams did I imagine that this video would spread like this.  Never did I imagine to hear the things I've heard from people.  Never did I imagine that Cory Booker would post it on his Facebook page, that Business Insider would call this the "story that will inspire you to do anything," that hundreds of my friends would repost, and that people I've never met would comment and be inspired.  Never did I imagine that what I do on a daily basis, what I consider normal, would drive and motivate and inspire people to be their best.  Never did I imagine that I can have that impact on so many people. 

And it's amazing what you learn.  As I said in the video I run because I love it.  I run because it puts me in my happy place and brings a smile to my face.  I run because it gives me a sense of freedom.  Free from CF.  Free from work.  Free from everyone and everything.  I learned that I love to run more and more each day.  I learned that I can continue to do anything and everything.  I learned, once again, that there is nothing in this world that can stop me.  As long as you want something and you have the drive, motivation, and determination that you can do anything.  I've learned and accepted that you don't have to be the best.  I'm not going to win every race.  I'm not even going to come close, but I learned that at the end of the day you don't have to be the best, you just have to be your best.  And with that there are no limits.

the twitter: @LungsontherunSB

Click here to watch the full video

What the marathon means to me...

Whenever I tell people that I run marathons they normally respond with one of three words.  I'm either crazy, nuts, or insane.  It's been nearly 11 months since I last crossed the finish line of a marathon, but here I am once again staring down the barrel of 26.2 miles.  A journey that will not only take me through the streets of Chicago, but a journey that will once again push my body and mind to see what I'm made of.  To see if I have enough determination, fight, and grit to overcome the challenges of the marathon and complete what only 0.5 percent of the US population will ever do.  To see if I can mentally, physically, and emotionally sustain the demands of moving my legs for 3.5-4 hours.  Just like life, the marathon is a roller coaster.  There will be ups and downs and highs and lows.  I will feel great at times and awful at other times.  I will smile and I will cry.  So to some of you this may seem crazy.  This may seem like something only people who are nuts or insane do.  But to me, the marathon is so much more.  For some, it's to pursue a dream, or cross something off the bucket list, or to prove to themselves they still "got it."  For me, the marathon is a celebration.

For a long time, I had a hard time finding one word to describe what the marathon means to me.  I had all the feelings, all the emotions and all the intangibles, but I couldn't find one word to sum it all up.  Last weekend I had the opportunity to see a friend of mine, Jerry Cahill, speak and he used the word "celebration" when describing what it was like to run and finish a 10K just 3-months after receiving a new pair of lungs.  After thinking about it for a few days I realized the word he uses is perfect.

You see, for a young man who has Cystic Fibrosis, a chronic, progressive lung disease that's exactly what the marathon is.  It's a celebration.  A celebration that at the age of 28 my lungs still work.  A celebration that my lungs are still strong enough to carry me 26.2 miles.   A celebration of how hard I work.  A celebration that I continue to  not only beat, but crush the odds.

And if celebrating life or the fact that my lungs are still this strong to run marathons makes me crazy, nuts or insane then yes, I am crazy.  I am nuts.  I am insane.  We all celebrate life in different ways.  This is how I celebrate.

I have a new addiction...

Every now and then I feel it's important to reflect. Take a look around, have conversations with your friends and assess what's going on. And every time I do that I realize I am luckier and luckier. Whether it's sitting down at a wedding and seeing that instead of wedding favors a donation has been made to the Boomer Esiason Foundation, or calling anyone of my friends to have them talk me through something that is bothering me, or putting up with me and my bad jokes for an entire weekend - 12+ hours in a car and 9+ hours on a bike - I realize I'm extremely fortunate for the people in my life.

Something else you should know about me. When it comes to physical activity I don't really understand moderation. The smart thing would have been to started with a shorter distance, but there's really no fun in that. I like a challenge. I like pushing myself mentally and physically. I like to see what I'm made of. 

So onto the point of today's post. My bicycle. Long story short. In February of this year I committed to the Seacoast Safari, a 2-day 150 mile bicycle ride up and down the coast of Maine to benefit CF, with some of the folks from Vertex Pharmaceuticals. Yes, I'd had a few adult beverages at the time and no I did not own a bicycle nor had I ever ridden one seriously in my life. But it sounded like fun so why not. Naturally the first thing I did was start to convince my friends to join me. I called my dear friend, Jacqueline, who I knew had a bike at the time and who's always up for anything to join me on this adventure. She then convinced one of her friends (who's my friend now too) Martha Ann. I also knew Matt would probably buy a bike and join as well. He loves stuff like this too. Then Ernie bought a bicycle a couple weeks ago and signed up last Monday. With no proper training, quality time spent on the bicycle, or even a real concept of what 150 miles was going to feel like we were on our way. I mean, I literally bought clip less pedals and cleats last Thursday and "clipped in" for the first time Saturday morning before setting off on the first 75 miles. Who needs practice with new cleats anyways.

And we had a blast. Yes, it was challenging and grueling at times. Yes, we spent 9+ hours on a bicycle in two days. Yes, we spent an additional 12-13 hours in a car. Yes, we ate more peanut butter and jelly sandwiches in 2 days than the past 3 years combined. Yes, we took a lot of Advil and Tylenol. Yes, we all used Tiger Balm at some point in the day. Yes, it was painful to sit down at my desk this morning. But, in the end it was completely worth it. We had a blast. We told stories and bad jokes (mostly me with the bad jokes). We made new friends, especially the folks from Vertex who are absolutely amazing and genuine and cool people. We became better friends. We stopped and took pictures. And let me tell you, there's really nothing better than a quiet country road early on the weekend morning with nothing but your friends, the smell of the nearby ocean and our bicycles. And that's why I had so much fun. Because I got to spend quality time with quality people. I got to see a part of the country in a way that most people don't get to - on a bicycle. And yes, I absolutely loved it. And yes, I cannot wait to get back out there on the road!

Finish Line Day 2 - Done and Done

Friends make everything better...

Throughout life there are many questions we often ask ourselves. Are we happy? Are we satisfied with what we are doing? Do we feel fulfilled? Is what we have in life is enough? Well, recently I think I found the key to what makes me happy. Yes, I'm happy because I'm able to wake up and smile every day. Yes, I'm happy because I'm healthy. Yes, I'm happy because I can run, play soccer, and do everything else I love. But that's not what makes the happiest. What makes me feel on top of the world is knowing that I have such amazing friends and family to share life with. I realized that without friends, the special moments wouldn't be as special. The celebrations wouldn't be as celebratory. The advice, dinners and nights out wouldn't be as fun and memorable. Without them, life wouldn't be as great.

Normally in life you have one or two people that you can count on. But not me. I have many friends that are truly amazing, remarkable individuals. The type of friends that would do anything for me. Friends who would take time out of their own busy lives to organize or attend a fundraiser, train and run a marathon with me and Team Boomer, go to a movie with me instead of the bar, visit me in the hospital when I'm sick, stand up for me when I'm feeling down, pick up the phone to tell me I inspired them today, or even just have a conversation to make sure my head is in the right place. Those are the types of people I have in my life. I probably don't tell them enough, but I really do appreciate everything. Big and little. And I cannot thank them enough for everything they do.

As I always say, they are the reason, the inspiration that drives me. The reason I wake up in the morning and do my treatments. The reason I fundraise. The reason I fight. The reason I cry every time I run the NYC marathon. The reason I do what I do. Without them it wouldn't be the same. There wouldn't be anyone to celebrate life with. Anyone to enjoy a casual dinner with. Anyone to share my thoughts, feelings, emotions and perspective with. Anyone to share my successes. My failures. It wouldn't be as fun. It wouldn't be worth it. And for that I'm forever grateful.

So with that said, whether you have one good friend or a hundred, don't take any of them for granted. Make one another smile. Enjoy each other's company. Cherish the relationship. Because at the end of the day, friends make everything better!

The future is bright indeed...

Welp, back at it. Realize it's been a while, but I thought this would be a nice time to write again. I want to share some thoughts based on recent accomplishments in the CF world as well as some of this past week's events. Living with a few chronic illnesses you kind of live with what I like to call hopeful skepticism. You're hopeful that treatments and cures will come along, but also skeptical that someone will unearth a medical miracle at the same time. You see, for the first 27 years of my life there were advancements in care that made life easier or fought off bacteria in a different way, but nothing that ever really changed the way we fight CF. That was until earlier this year when a completely different kind of drug was approved. I won't go into too much detail about how it works, but it's called Kalydeco and essentially it attacks the faulty gene and helps improve the function of a defective protein in CF patients with a specific genetic mutation (there are many). Click this link if that doesn't make any sense: http://www.cff.org/treatments/Therapies/Kalydeco/. They explain it better than I do and no, I don't have this mutation, but it's a huge and exciting step in the right direction. Vertex is working on developing medications for other genetic mutations.

So to this past week....on Monday, I was invited to "Kick for a Cure" a fundraising event that the Stack Family and CFF had organized with the New York Red Bulls training staff. It was organized because Jacqueline, the youngest of the Stack children, has CF and is an avid soccer player. I too have CF and am an avid soccer player so I was thrilled when the invitation was extended to me. I didn't really know what to expect. I figured I'd go, kick the ball around, say hi to the family and then go home, but what I got was much more. It was great to see Jacqueline out there on the soccer field running, competing, having fun and smiling - just being a kid. Even though we are years apart we both know how hard it is to take care of yourself manage CF and to see someone that age with such strength and courage and determination was truly inspiring. Then I spoke to her parents. Looking back at my life, I don't really remember when I realized that CF didn't only effect me, but also my entire family and we were going to beat it together, but it took less than 1 minute for me to realize how involved and strong her parents are as well. Fundraising and making people aware and doing everything in their power to help make Jacqueline's life easier. It also reminded me a lot of my family and how lucky I am to have them in my life. Truly, truly a great couple hours and a really committed and inspiring family and story.

And then last night I attended the annual BEF Celebration of Life Gala. The event was absolutely fabulous and I could talk about it for a very long time, but I want to share one part of the evening with you. My friend Kevin, who also ran the marathon this past year and has CF, and I were chatting about running and how we were feeling when this gentlemen behind us asked how our FEV1 is impacted during training. Now, this is a pretty clinical question so my initial response was, "Are you a doctor?" His said, "I'm Eric Olson, the CF Program Leader at Vertex" - the same company that is working so hard to make our lives easier. A normal reaction might have been "thank you" or a handshake, but instead I gave him a hug. Yea, maybe a bit overzealous considering I'd just met him, but this man is working tirelessly to make mine, Kevin's and many others lives easier. So I thought a hug was appropriate. Anyways, we chatted for an hour or so with him and another gentleman from Vertex, Ian Smith, and what made the conversation even more remarkable was how much they actually cared and how passionate they were about their work. How it was more than just their job. How badly they want to make our lives easier. How truly engrained they are in finding more solutions like Kalydeco and how they aren't going to stop until they do. Really a breath of fresh air (pun intended). Thank you.

And As most of you know, the CF community is fairly small. We rely on fundraising and donations and awareness and research to drive things forward. It's really a collaborative effort and it's amazing to see the dedication and hard work of so many people from so many different backgrounds from different companies working together to find a cure. This is what gives me hope. This is what allows me to really think about the future long-term and not think what if? This is what will one day make my life and the lives of easier a whole lot easier. So for now all I can say is thank you and that I'll continue to do my part!

And on a side note, a big congratulations to Jerry Cahill and Kevin Dwyer on their awards last night at the gala. Two outstanding and inspirational individuals. They truly are role models and very deserving of last night's awards.

The significance of my 28th....

So haven't blogged in a while. About a month I think. And well, today's topic isn't the most uplifting, but it's real. It's something I don't think I've ever shared with anyone and I'm not really sure why I'm sitting here typing and now sharing this with whoever reads my blog. This is something one would probably share with a therapist or loved one first, but I guess writing is my form of therapy. And I guess I'm getting more comfortable with sharing as I get older. I don't know. I wish I did. Either way, here goes nothing...

For most I would imagine that 28 isn't the most celebrated birthday. You've officially entered your "late 20's," your 10-year high school reunion is right around the corner, and are that much closer to the 30. For me, the number 28 is a bit different. 28 was the number that was associated with death when it first became a reality. I was 10 or so when I read that the median life expectancy for someone with CF was 28. I was 10 years old and scared and petrified that my life was almost half over. How could I die so soon? I hadn't even had a chance to live yet. My parents and doctors tried to explain to me that median is an average, but I was 10. I heard "death" and I heard "28" and I thought I was going to die in 18 years. Then one of my childhood friend's brother who also had CF passed away. He was 17, maybe 18 years old. That's when it hit. Death was real. I had a serious lung disease and I too might die young. Very frightening thought for a 10-year old to try to cope with, but that was reality. Learning life's tough lessons at a young age became the norm.

Most people say thanks once-a-year around Thanksgiving. Not the case for me. I'm thankful for every day. For all the things in my life, big and small. I'm thankful that I can wake up and smile and take a deep breath. Thankful that I can go to work (most days). Thankful that I can spend time with my mom, dad and brother and all the other amazing people in my life. Thankful that I get to celebrate marathons, birthdays and everything else with such a good group of human beings. Thankful that I can live. Thankful that I've had the opportunity to accomplish many great and cool things in my first 28 years of life. To be quite honest, I think I've experienced and learned more in 28 years than most learn in a lifetime. The older I get the more fortunate I feel I am and the more I appreciate everything and everyone in my life. But most of all I appreciate time. It's the most precious thing we have in this world. Don't waste any of it. Here's to another 28 great years!!!