Saturday, May 16, 2015

Mallory Cyr, MPH

Today, I graduated.  I graduated with my Master’s Degree in public health from Boston University.  Not “regular” graduated, but graduated from overpriced extra college, from one of the top Public Health schools in the country.

While I joke that it was not challenging, because academically, a lot of the content I already was familiar with because of my national MCH role, it actually was pretty tough at times.  Can you do a multi linear regression? Ok.

But for me it was about so much more than a few biostats equations.  I struggled a lot with WHY I was doing this, which many of you know.  Last weekend, a dear friend and colleague of mine, a “title V mom,” posted on Facebook about how much it meant to her to see other families share the milestones of their young people because it was an image of hope, and of what could be possible for her child, and for others.

And all of a sudden I remembered why I got myself into this situation in the first place.  It is not about me. (Really, I swear).

Today, at graduation, our speaker, Monica Bharel, the Public Health Commissioner, for the Massachusetts Department of Public Health, said, “Choose courage, Choose hope.  Choose selflessness.” And had us think about “What are you passionate about?”  (My answer was, “Nothing. I shouldn’t be here.”)  then helped us define that by asking “What makes you angry?”  ….and the list flowed in my brain.

I remembered.  I did this, to show the potential of young people no matter their limitations.  Let the fa├žade fall aside, it SUCKED so hard sometimes.  I cried, I hated it. I questioned my choices on many, many occasions. I thought about quitting and just moving home.  I thought about “What would happen if I went home and just stopped replying to e-mails.”  But then… I would get a message from one of “my young people.”  One of the selected for Dumbledore’s Army, simply asking about how to succeed in a class in which the teacher was not accommodating, or wondering what to do after graduation because they had real hopes and dreams that others did not support.  And I remembered.
I am here, and I did this, WE did this, to show it’s POSSIBLE.  With love, strength, support, work, and determination.  It can be done. I also want to mention.  During the time I was in school, Owen and I had no formal assistance.  We had no PCA’s, no nursing help.  We worked multiple jobs, and truly did this independently (except for the endless love and support from our networks and friends and families)

I want the lessons that we learned to serve as a beacon, a tool, an “inspiration,” to show others what can be possible for them, or their children.  What makes me mad?  When those amazing people are told they can’t, or even just made to think they can’t. And you know what else I realized, sitting there today?   The only person who EVER told me I can’t…. was me.  Now… I don’t believe that either.  Cause I DID IT.

The final part of my graduation ceremony, our incredible associate dean, asked us to accept the charge of being world changing MPH’ers.  I closed my eyes, and thought about if I really, truly was ready to accept the challenge.  He asked us, “Do you promise to use your new passion, energy, and knowledge to create a healthier world?”   And we all looked at each other and muttered “I will.”  He looked at the faculty and said, “They don’t believe you. No… actually. We KNOW you will, but we need you to know you will.”

I stood quietly, and the tears came.  For the past three years I have asked myself this same question.  Why me?  Can I?  Should I?  Do I make a difference? Do I want to make a difference?

Moments before I marched into the arena, my best friend, and counterpart, just beginning the journey towards her MPH, wrote on my Facebook newsfeed, “You changed my life Mal.  #forgood.”  And I knew, I was ready to accept the charge.  We all shouted and cheered.  “I will!!!!!”

Was this my “dream?” No… not really.  But life is what happens when you are making other plans, and I believe in the universe, and that I was brought here for a reason.  I am working to make sure that my dreams align with what the universe has in store for me, and THAT is my passion.  That is my charge.  As I move forward with my incredibly hard earned MPH, I hope ALL young people have the strength and courage to think about what makes them want to get up in the morning, that they can laugh when things get tough, or know that they are loved, and valued and wanted no matter what they do.

Just because my path is not mentioned in a speech does not make it less important.  It is what has brought me here today.

So for all of you, who believed in me, and who believe in your own children no matter how terrified you may be for them to take the Next Step, this degree is for you.  It truly, truly is. 

Thank you.  I love you all.  Now let’s get this MPH Party started.

-Mallory H. Cyr, MPH

I leave you with this:

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
but I can make an explosion

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time

This is my fight song
Take back my life song
Prove I'm all right song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
Cause I've still got a lot of fight left in me

Thursday, May 07, 2015

It's over, It's Done.

It’s over.

Yesterday, I got the email from my advisor, closing the door on the final assignment, my directed study that has taken many different shapes over three years, and finally became something I was proud of. 

“I put the grades in as an A.  Pop the Champagne.”

So after silently weeping in Barnes and Noble, I did, and it was the best I’ve ever had.  (no… that’s not true.  It was sparkling wine….but you get me.) 

It doesn’t feel real yet, that this journey I began three years ago, eager and excited, is coming to a close.  But it is!  GRADUATION is next Saturday, my regalia is being altered by a dear friend (who also happened to decorate the White House for Christmas)  and the most urgent thing on my to do list is to get my hair done and pack for VACATION.

That’s right.  The Cyrs are finally celebrating all there is to celebrate.  Before my graduation, my baby sister is graduating with her bachelor’s in Sociology.  I am so freaking proud.   It’s going to be Graduation x 2 weekends, then off to the Hard Rock in Orlando to get our Hogwarts on. 

I really am not at the point of being able to form many coherent thoughts right now, as the feels are taking over.  There will be a lot more big announcements coming up, but for now I am just savoring these moments of being a graduate.  A day I really thought would never come.

My route to this degree was not totally traditional, and truthfully, the biggest struggle was not academically, but figuring out how to do it all, how to get from point A to point B, and not letting it all drive me to the point of no return. I hit some really dark times during this program.  I wanted to quit everything.  I never wanted to hear the words MCH, or public health ever again.  I wanted to pass the torch, throw it at whoever cared, because I just didn’t.

But during those times, I discovered just how amazing the people at BUSPH really are (no they didn’t pay me to say this)  They listened to me, they asked me “Whoa… what is really going on?”  Instead of just wanting me to get through the assignments, they really CARED how it was impacting me, and my psyche, and my identity.  And that in itself made me want to succeed. 

As it typically happens, when the snow began to melt, my soul settled, and began to remember why I was here, and even bigger, from here on out, that the journey is mine.  I was brought to this point, by the work I have done and the people I knew.  I learned a lot, and now it’s time to stop once again and figure out what’s next.  Not based on what people want me to do, but what I want to do.  

That’s probably the scariest part.  But also thrilling.  I remember the first time, when the transition grant ended and I had to make these same choices of what was next.  But I was making them alone, from the safety of my parent’s house in Maine.  The stakes are a little higher now, but I’m a “little bit older, a little bit wiser (JRB)” and feel excited about the idea of the world being my oyster again. 

But you know what’s pretty cool? Although we could all evaluate the academics, and the structure of the program at BUSPH (or anywhere into which you are putting ridiculous amounts of money to further your education),  I FEEL smarter.  I really do.  About life, about MCH, about research…

About me.

It’s not for nothing.


Thank you to my family, who banded together when times got so rough we all didn’t know how we could go on, and who celebrated every small victory along the way.

Thank you to my other family at BUSPH (who saw me more than my real family) for supporting me to say all the things that need to be said, and helping me to explore where I fit into this crazy MCH world

Thank you to my job for being supportive when I had to be three places in one day and had to work virtually for a month due to Snowmagedon.

And thank you most of all to my love, my partner, my colleague in this journey (not fight… I refuse to say it’s a fight) for reminding me that I can do it, and that I’m smart, and beautiful.  Even when I have resorted to using dry shampoo because when you don’t shower, you get to work earlier).  
For having dinner on the table when I have existed on yogurt, and Peet’s coffee for the entire day.  

For videoing my presentations even though he’s heard them a hundred times.  

For eating excessive amount of thai food because sometimes all I want is noodles (like every day).

But ultimately, for leaving behind everything he knew, to be by my side on this journey, which probably we can file under the hardest years of our lives (I hope), for braving a historical winter, a terrorist attack, earthquakes, hurricanes, weddings, deaths, and everything in between.

Together…. We have done it.   Cheers all.  

We’re crossing the finish line.

Wednesday, March 18, 2015

Happy Bloggiversary!

It was a year ago earlier this week that I relaunched my blog as the new, Curb Cuts and Cocktails, and "came out," as someone who was pretty confused about what she had gotten herself into!  It really feels like just yesterday I took the bold step to start writing as who I really am, instead of who I thought the internet, and the world wanted me to be.

After that post, I made a vow to move forward with my work, education, and life, as authentically as possibly, and I must say, while it has not always been easy, it has been awesome.  I feel like I have done better in my education, work, and everything else.  I just feel LIGHTER.

Last month, while Owen and I were cooped up due to the snowiest winter in the history of Boston, I began writing.  Like really writing- beyond blogging.  It is going to be for one of my final projects for school, but I believe it also has the potential to be much more.  I submitted to my advisor, fifty pages, single spaced, just the tip of the iceberg of what we have experienced moving here.  I realized it was the first time I have really begun to process the whole experience in its entirety.   It was exhausting, emotional, but also cathartic as I realized how much I have overcome, and I'm not entirely crazy for having some fear and anxiety moving forward.

Just wow.

So in celebration of the 1 year anniversary, and the snow finally melting, Owen and I decided to do a follow up video blog to the brief story the Boston Herald did on us at the end of February.   There is too much that needs to be said to let someone tell the story.

I have been thinking about doing some more video blogs.  If you follow my Yoututbe channel, you'll know this is something I used to do quite frequently, as I was home and had endless amounts of time to talk to a screen, because that's where my friends lived. I also have realized I have acquired quite a list of questions that I have gotten from young adults, providers and all kinds of different people just about how we live our lives- so maybe it's time to relaunch "Ask Mal,"  (also, they're just super fun to do!  So if this is something my readers would be interested in, do let me know!  Who knows what spring could bring.

Regardless of what's to come, thanks for hanging in there with me through all of this existential nonsense! It sure has been a ride hasn't it?

Here's to many more blogtastic years!!!


Saturday, February 28, 2015

Come at me #RareDiseaseDay

It’s Saturday morning, and I’m making pancakes.  As I’m stirring the batter, my IV pump beeps at me, nagging for my attention.

It’s Saturday morning, and I’m making pancakes, that people never believed I would eat.  The rest of the day will be spent celebrating the birthday of my boyfriend of three years, and undoubtedly working on homework for classes to make sure I graduate with my master’s degree in May, as I’m anticipating.  Milestones that we were told I would never meet because I wouldn’t see a birthday after I turned two.

Today is also “International Rare Disease Day.”  People are all supposed to “raise awareness" on this day about illnesses that don’t roll of the tongue quite as easily as cancer, or tend to get resources, support, or even diagnoses sometimes.

I can’t quit explain it, but stuff this puts a gross taste in my mouth (you’re supposed to find an “event” in your area, to “celebrate” Rare disease day? What?)

No offense to those who are all about it, and the cheerful, colorful logo, that makes having a rare disease look like an invitation to Mardi Gras, and sorry to use the phrase, but:

I literally just can’t even.

I think part of it is that my life has become devoted to raising awareness, of everything.   EVERY DAY.  Then all of a sudden there is one day, and people are supposed to listen?  Then they can go back to their own typically developing life and go “wow, I didn’t even know half that stuff existed.  Glad that’s not my life/my child, etc.”

The other thing is, my “messaging/personal brand/identity/whatever,” is based on the fact that I don’t spend time dwelling on how aware I am of my rare disease, CAUSE TRUST ME, I AM AWARE.  It is a huge part of my identity, but at the end of the day, it is NOT who I am.  I also tend not to jump on the “disability/chronic disease pride,” wagon, and you will not catch me posting photos of my central line, or medical accessories on THE INTERNET on “tube feeding awareness day,” or whatever.  

Because, I believe I can create awareness without me showing my body (or anyone else's) in ways others would not (unless they were getting paid mad money-  it’s on my CHEST, get me?)

I’m not trying to hide anything about my life, but why should it be the center?  My sister and I actually used to photo-shop our central lines out of photos, like other people remove red eye, or whiten their teeth.  We’re not denying who we are, but that’s not the point of the picture. 

The point of the picture is that we’re at the beach, spending time with friends and family, living our lives.

When I was younger, I used to play the whole “I wouldn’t change a thing” game, about my disease, but guess what?  I’m an adult now, and now that I’m the one doing everything to manage my health (and insurance coverage) I’d get rid of it in a heartbeat.  It’s bullshit.

No, I don’t know who I would be without it, and granted if it all of a sudden it were gone (without a transplant or anything else that would ultimately destroy my quality of life…. I mean like a genie came and bam, it was gone) it would be weird, and I’d have to reassess a lot of things in my life, because my life, and ultimately my career has been BUILT on advocating because of my illness, which truthfully, was not my plan.

What I wouldn’t change, is the people in my life, the opportunities I have had, or the wisdom I have gained because of my diagnosis.  I am happy, and honored to now be able to show the young families and up comers with my disease (Microvillous Inclusion Disease- Google it, this isn’t a biology lesson) that there is LIFE after a diagnosis, and it doesn’t have to be a death sentence. 

What if I didn’t have my “rare disease?”   Maybe I would still be in my hometown, living in a trailer with a couple of kids, going through the motions like everyone else.  But maybe, I would have been able to grow up with even less limitations and I’d be in a different industry, working for a fashion magazine, sprinting around a city in heels, not spending my time wondering how I was going to get to the next doctor’s appointment in 100” of snow.

But guess what?  What ifs don’t raise awareness, and that’s not my life.   Now if you’ll excuse me, I have to go finish making breakfast, and enjoy my Saturday before it is time to be aware of my rare disease again.



Also- As I’m posting this entry, my girl Britney’s song “Do Something,” came on.  So listen to the woman and don’t just change your profile picture.  EVERY day is time to “raise awareness.”

I see you lookin' at me
Like I'm some kind of freak
Get up out of your seat
Why don't ya do somethin'?