Up On My Feet

In the months that it took for me to get my diagnosis, I became increasingly desperate for one. The ten months that bridged November of 2015 and September of 2016 were a source of frustration and confusion. Why wasn't my leg working? Would I ever get feeling back in my left leg? Will I have to use a cane for my entire life? What is wrong with me? A dozen or so MRIs, a spinal tap brought no answers. While steroid treatment and plasmapheresis treatment brought relief, I was still in search of a final answer. At the end of August, exactly two years ago, I got my answer. I was diagnosed with Multiple Sclerosis. The next chapter of my life officially began.

However, it soon dawned on me that my diagnosis gave me something I had never considered before: a life sentence. While I was fortunate and blessed to not have a terminal disease, living with a chronic disease would be a lifelong battle. With a young family as well as a career that I loved, I was going to have to figure out how to live with a disease whose amorphous presence had the potential to make living each day difficult. After the struggles that my family and I endured in those murky first months, I set a simple yet powerful goal and standard for my future health: being up on my feet.

Whenever anyone would ask how I was doing, I would tell them I was doing well because I was up on my feet. During my darkest moments, my disease taught me that the most simple things are often the best things. If I was up on my feet, I could play with my kids, cook for my wife and teach my classes. If I was up on my feet, I could life my life.

Since my diagnosis, I've been on a program of an aggressive course of treatment that has so far been very successful. I've chronicled the importance of rest and the amazing support that Kate has provided in regards to this crucial part of our fight with MS. Conversations with my neurologist surfaced another important piece to this fight: exercise.

I don't like to exercise.

Not a groundbreaking statement, I know, particularly when you see the staggering statistics related to obesity and heart disease amongst my fellow Americans, but I have never been interested in exercise. I've been delusional enough to join gyms (I'd say between membership fees and actual visits, I paid $87 per visit) but have never been able to commit to a consistent exercise routine. However, over the past year, I've pushed myself to make that change.

With the continued numbness in my left leg, I knew that running would be a tall order, so last summer I bought a new bike. I rode a little bit and bought a little trailer that I could pull the boys in. After a winter of weekly yoga classes and stationary bike riding, I decided to commit to going for longer rides three times a week throughout this past summer. I did some homework, bought some gear and began to go on longer rides. Starting at 10 miles, I soon started climbing up to 15 and 20 mile rides.  It was during this time that Kate sent me a link for a 25 mile ride from East Hampton to Montauk. My family has a long history at in Montauk which sadly ended last year when my sisters and I made the difficult decision to sell our family house. Once I learned of this ride, I made it a goal to do the ride. I've been riding consistently over the past two months and I'm looking forward to my first official ride next week to a place that is so special to me and my family.

Even more exciting will be my second official ride.

On Sunday October 21st, I am going to complete what I hope will be the first of many Bike MS events. At 30 miles, this will be my longest ride and I can't imagine one being more important. The National Multiple Sclerosis Society has been a great support over the past two years. In addition to the resources they provide, Kate and I have also been lucky enough to contribute to the MS Connection blog. This outlet has helped connect us with other people and learn of their struggles as well. We have raised almost $10,000 over the past two years through Walk MS with all money going towards creating a world free of MS.

Perhaps most importantly, this ride will be special because I am able to do it. While I'm always happy to be up on my feet, I'll be even prouder to be sitting on the seat of a bicycle. Through my treatment, my rest and a new found and unexpected commitment to exercise, I will be able to ride my bike in order to fight my disease.

Over the next month and a half I will be raising money for this ride. I have set a modest goal that I hope to meet. I appreciate the support that many of you have given to our Walk MS fundraising in the past and hope that perhaps you could support me as I take on this next challenge.

Blue Peter and the Class of 2018

Tonight was my school's graduation. While all graduations are special, tonight was even more so. Tonight my Crew graduated. We started together in 2014 and over the past four years all 15 of them have become an important part of my life. I love those kids (not really kids anymore!) and will miss them desperately. I was lucky enough to be chosen by the class of 2018 to give their commencement speech. Here's the text and if you happen to be friends with Kate on Facebook you can watch the whole thing. Congrats to the class of 2018. 

Principal C, fellow staff, guests and of course the class of 2018.

Let me start by first thanking the students. We started here together

four years ago and I have now taught almost every student in the school but You

are my people. Thank you for giving me the honor of addressing you on this

wonderful day.

The life of a sailor cannot be an easy one.

While potentially filled with the adventure of seeing the world, this life also

includes the monotony of 4 hour shifts on watch examining the endless horizon,

eating bland food in the galley, and the cramped quarters found below deck. There

is however one place that every sailor loves: port.

Once docked in a port city or town, the sailor is free to do anything ranging from

seeing the sites of the place in which they have just arrived to the more

debaucherous practices commonly associated with sailors which are

not fit for a high school commencement address. Once their time in port is over,

it is time for the sailor to return to the ship. They knew it was time to go back

because as they looked back from the streets of their temporary home they would

see the Blue Peter.

What IS a Blue Peter?

This is a Blue Peter

Blue Peter

It’s a flag

More accurately, it’s a nautical flag.

Nautical flags were originally used for communication between ships and sailors in 

the time before radios and phones. 

There are 26 flags. Each one has a different design and color and each represents

a letter of the alphabet  and has a distinct name and meaning. Traditionally,

Blue Peter is the nickname given to the flag that represents the letter “P.” It is a

blue flag with a white square in the center and it means “All persons should report

on board as the vessel is about to proceed to sea.” So when a ship is flying the Blue

Peter, everyone knows that its voyage is about to begin. In short, the ship is

Outward Bound.

Well as you might have noticed on one of the many t-shirts you received over the

past four years, we are a New York City Outward Bound School and whether you

know it or not, we first raised this flag together on September 4, 2014, your first

day as a student at the Kurt Hahn Expeditionary Learning School. We met as a

Crew for the first time and you were soon off to the beginning of life as a high

school student. You were led through expeditions and case studies by Ms. G,

Ms. D, myself, Mr. B, M, V and W. You started to build relationships in Crew with not 

only your classmates but also Ms. B, D, J and O and myself Mr. B, J. As the first few 

weeks turned into the first two months you got more comfortable. You even heard a 

voice in your head. Even if it was a whisper, you thought to yourself: I can do this

Then, we did what Outward Bound and Expeditionary Learning do best: we

challenged you. We even made you a little uncomfortable. We brought you

camping. Adventure Week is not an easy thing. It is rewarding, it is foundational, it

is important but it is most definitely not easy. But after five days and four nights

together as a Crew in the woods with no shower, at times less than desirable food,

and even some snow, you might have begun to realize that there was more to you

than you thought. You came back to East Flatbush and pushed through the dark

winter months that precede the warmth of spring. You presented a 9^th Grade

Roundtable and were soon on your way to 10^th grade. When you arrived in

September you noticed some new faces (Ms. R joined our Crew) as well as

some missing ones. SLCs, a college trip to Washington or Philadelphia and

10^th grade Passages left you at the doorstep of 11^th grade and as that year ended,

you again said to yourself: I can do this, except this time it was a little bit louder.

Then you became upper classmen. 11^th grade brought Ms V and Ms.

R into the 2018 family as well as….Alexander Hamilton. You began to hear

and think more about college and life after high school.

You also entered into the world of PBATs.

Over the course of the next two years, you would be challenged once again. This

time you were asked to analyze and assess, compare and contrast, decide, discuss,

and defend. Which is the most durable material for a cell phone case? What is the

best way to fight racism?  How can you measure beauty mathematically? Does

globalism do more harm or good?. Your teachers pushed you to do

more and over the next two years, your once bold statement changed a little bit.  I

can do it was replaced with a more hesitant I can do this? which then shifted into

more doubtful statements

I hope I do it.

I don’t want to do it.

I can’t do it.

Senior year was just plain hectic. Counting credits, college applications and essays,

more PBATs and a walk down Avenue D to Utica on a cold December morning to

mail your college applications. Some of you only had to panel for English while

others faced a more treacherous path towards graduation. As the semester ran

down and May turned into June you might have been faced with another thought:

I’ve come too far. I have to do this. Some you may have been having that

thought this morning or even this afternoon as you raced under the wire.

But now, here we are.

You sit here, in the same auditorium that you entered on September 4, 2014. The

same auditorium where you competed in Crew Olympics and proudly entered as a

college applicants and now, as a member of the graduating class of 2018. Your

mantra has transformed one final time. Now it is a simple yet powerful three-word

sentence:

I did it.

This is an important because as you prepare for the new challenges moving quickly

towards you, you know that you are ready. If you don’t feel ready then you better

get ready in a hurry.

Now it’s real.

Not that it’s been fake leading up to this point, but now it’s real.

School costs money.

Ms. C won’t be there to pull you into her office for a graduation update,

your Crew teacher isn’t going to be there to remind to meet that deadline. Your

family isn’t coming in for an SLC. Now, it’s up to you. When times get tough and

that doubt creeps back in, as will certainly happen, be prepared to repeat that credo

again and again: I can do it. Say it with conviction because over the past four years

that’s exactly what you’ve done.

So tonight, the Blue Peter is raised one more time, but this time it’s different. This

time, YOU are the one raising the flag. YOU are the captain. YOU are Outward   

Bound.

Over the past four years everyone in this room has been preparing for this moment.

Your moment.

Like all good captains you have made sure that your ship is ready for the

journey. As you depart, take with you the lessons that you learned while in port

here on Tilden Avenue over the past four years.

Be compassionate

Do your work.

Respect others but more importantly, respect yourself.

Say thank you.

Speak your truth.

Try new things.

Remember that no one is going to do it for you.

Smile.

Laugh.

Cry.

Be kind.

Don’t throw away your shot.

Find value in what you do, whatever that may be.

Be humble.

We love you.

We’ll miss you

GO DO IT

Thank you and congratulations to the class of 2018

This is MS

This week is MS Awareness week.

I learned of this from the same place we learn many things in 2018: social media. On Facebook, I was given the option of framing my profile picture with an orange theme and the words "This is MS". As someone who lives with this disease, I decided that this was a simple way I could give the people in my life a reminder of what my family and I, along with millions of others live with every day. When I went to do it, I realized that my profile picture was one of my two sons taken during a trip down to the Naval Academy last fall. I immediately stopped what I was doing because I thought to myself "THIS is not MS. My sons don't have it, I do." This may sound obvious, but I just didn't feel like it was an appropriate picture to post as to what MS "is".
Then I thought about it.

I realized that much like almost everything in my life, this disease wasn't just about me. I reframed the dilemma in my head and realized that there are many things that I could identify and say "This is MS."

My sons are two of them. My two lovely boys can both exacerbate and heal my illness. The demands of being a father to two young boys most certainly wears me down and leaves me short of both energy and patience, both amongst the most prominent of my symptoms. However, it's the same boys who I can watch during quiet moments and be amazed by the love I have for both of them. This love is a driving force in keeping me positive during the toughest times, reminding me that I have so much to live for as I watch these boys grow every day.

My wife is MS. I wrote last spring about the support she has given me every day since we started this journey and she continues to do so every day. I couldn't do anything without her.

My cane is MS. I'm fortunate that I haven't had to use it for over a year, but the can I acquired during my very first occurrence in December 2015 is always lurking around the corner. It provides a reminder and a sense of humility any time I think I can skip riding my bike or taking my vitamins and supplements.

My treatment is MS. I often think to myself that the only time I truly feel "sick" is when I go for my treatment. Checking in at the front desk, getting weighed, being questioned about my symptoms and then poked with a needle are all a part of a monthly ritual that makes me take pause on the maintenance that I have to keep up with in order to remain healthy. I am blessed to have received my diagnosis when I did, as we live in a time where the medicine and treatment of the disease are well researched and effective. At both treatment and appointments with my neurologist, I see people who are confined to wheelchairs and haven't had the same fortunate turns that I've had through the uncertainty of MS. I feel tremendous empathy for those people because I've had moments in the past two years where I wasn't too far from being in a wheelchair myself. My doctors, my treatment and the work of the National MS Society continue the progress made over the years to help us live as normal of a life as possible.

Finally, I am MS.  It's been 27 months since my left leg went numb and my life changed forever. I've had dozens of MRIs, a spinal tap, steroid and blood spinning treatments, monthly infusions and more exercise that I had most of the previous 30 years of my life.

So here I am. My left leg and foot are still numb, I wake up feeling hungover without having touched a drink the night before and the bathroom is still an adventure. But you know what? I'm doing pretty damn good. I'm one of 400,000 people in the US and over 2 million worldwide who fight this fight every day. I continue to grow and learn from all the people in my life as I try to be a better person every day. I never know whats waiting for me in the future but I know that whatever it is, I'm ready for it.

On April 15th, my family and I will be participating at Walk MS-New York City. Any donations to our fundraising page can help the MS Society continue to do the research needed to fight this disease. Thank you for your support!