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'?

Wednesday, February 11, 2015


So.  How bout those Patriots huh?

(except… isn’t that a good thing?  I don’t know how to New England…)

But really.  This snow.  It’s all anyone is talking about, it’s all over the internet, and I feel like I need to release some sort of statement.

When the storm first started, we actually were in DC at the 2015 AMCHP conference (flashback to 2013 when I left poor Owen to brave Blizzard Nemo alone…. He knew better this time)

The conference itself was wonderful.  I almost didn’t go, because I have been trying to distance myself from a lot of things from my past, and the work that I believed to be that of someone else.  What I realized was that, there was a reason our proposal got accepted, and that our presentation was once again standing room only, and that as soon as I walked through the door of the Hyatt Regency, people were asking me the questions that I have been invited all over the country to answer.

I got to spend so much time with some of the most powerful, amazing women I know, I got to FINALLY meet my MCH soul twin, Teresa, and it was just good.  

It was good because for the first time, I was really, and truly, ME.  I know I needed to take that AMCHP “gap year,” to figure out who I am, and where I fit into all of this public health nonsense, and while I don’t think I have the answers, I know, that I missed “my people,” and there are folks who share the same beliefs as I do, and can be in public health and still be REAL and I know… that I can’t run from this work, that I’m not meant to, and that my message is just coming together, to be heard.  In whatever way it’s meant to.  And I’ll figure it out.

But back to this SNOW.  So we got stuck in DC.  Luckily we were able to land our room for another night, and were safe and cozy in a lovely hotel (my favorite place to be stuck)  rather than sitting in an airport with the entire east coast trying to get home.

And then… we basically have been home. Since January 28.

I have been fortunate to be able to work from home, and the city has actually recognized this weather as being COMPLETELY ridiculous, and things have been shut down and cancelled (which didn’t always happen where I used to come from) So it will officially be two weeks tomorrow- and I left the house twice. Once to go to class, and once to go to a concert because… Joshua Radin, and $31 tickets.

So being inside for two weeks, I have come to more conclusions.  Not dark, twisty conclusions like my last entry, although those were pretty cathartic as well.  Just conclusions of how I feel about winter, New England, and people who judge others because of those feelings.

Snowpocalypse 2015 Conclusions:

- “Stay Warm,” is a perfectly acceptable e-mail sign off.  Most likely we’re all working from home and looking at the piles build up outside.  Solidarity bro. 

- Some uber rates are just not worth going out.  I have never seen a 3.6x uber price surge before, but with a wind chill warning, 5 degree temperatures, and completely optional appointments to go to- they’re getting cancelled.  As sweet as it was for that driver to hold my hand and assist me over the snow banks to get to the sidewalk to go to class, I’m sure they much prefer remaining in the vehicle and exchanging a “thanks, goodbye,” as much as I do.

- There are just certain things people should resist saying as it does NOT make the situation better, and will mostly just cause me to feel rage and distain.  So I am going to take these comments and make them “teaching moments,” because I am feeling particularly zen right now (probably due to the fact that I have not been out in Boston public for two weeks).
·      “You’re from Maine, you must be used to it.”   OMG BUT REALLY THOUGH. STFU. You might as well have just asked me “How’s the weather down there?” I cannot.  Yes. I am “from Maine.”  Yes.  We got WINTAH.  And yes, it sucked as much.  Here is the thing though- my PARENTS MOVED ME TO MAINE.  I was four.  But if you ask anyone who knows me (including my parents) they will tell you I was born on the wrong coast.   Ask my parents about how impossible it was for me to walk in the snow, and they used to pull me in the sled until it tipped over and they had to put me back in in my neon pink snow pants that barely zipped because they are not made for people with GI issues.  Or the time we had an ice storm when we lost power for a week and had to go live at the hospital because we needed power to keep our IV pumps running so we could live. Or that time I was in college up NOHTH, and we would lose power so there was no heat and it was too cold to shower before class (yea… we were sexy….)

So what’s my point?  Yea, I’m FROM MAINE.  AND I LEFT.  I am not a stranger to snow… but it does NOT mean I ENJOY it anymore than you do.  I was not a four old who begged my family to bring me to the northern most state because I wanted a pet moose.  It sucked there, it sucks here and no, being from Maine does not make me immune to hypothermia or slipping on ice.  I didn’t develop a layer of blubber or thicker body hair to keep warm (although, I think if you stay there long enough it might be a thing)  so just STOP. ACKNOWLEDGING I AM FROM MAINE.  IT DOES NOT MELT SNOW.

With that, is the next comment.  Which is even more rage inducing.  “Well, if you don’t like it, JUST MOVE.”


Ok.  I’m going to take a deep breath now.  Because. Zen.
Perhaps you have been living under a rock, and not reading this blog for the last 9 years about how bad I wanted to JUST MOVE.

Perhaps you have the luxury of just packing a suit case and “going to find yourself.”  I bet you also have the luxury of lacing up your bean boots, shoveling your own driveway and braving the B line with all the other mildly disgruntled commuters.  Must be nice.

For those of you who have been trying to get around the city recently, please imagine what it must be like for someone who has ANY added challenges. 

The curb cuts are not accessible, and there is no room to even put the ramps down to get ON the train.  To be honest, after the last couple of weeks, the conversation to relocate has definitely come up.  Along with EVERYTHING that would entail.  For those other few people who have been living under a rock…. I happen to work in health care transition and can tell you. It’s 




The first person to come at me with a job offer with amazing benefits (who is willing to accommodate chronic health needs), a ball-busting PCP who believes in medical home, a fully accessible apartment and 3 months rent for first, last and a security deposit. 

BY ALL MEANS, we will pack our bags and JUST MOVE. 


But considering it has taken us about 3 years to even get our ducks in a row living here, and oh you know, I need to graduate which is why we came here in the first place, we will be sucking up these last few months of Boston winter and seeing what the next few months hold.

Considering everything else we have been through- the last couple weeks seem like a pretty sweet deal.

Which brings me to my last conclusion.

The last couple of weeks have been REALLY NICE.  Really though.  I think my immune system is grateful I have not left the house.  I have slept adequately, I have been productive in my work, and academia, AND I have been able to stay caught with house things like laundry (which is so quick to do when it’s not piled up the ceiling) and Owen and I have been able to share dinner, and brunches and laugh, and watch movies, and the crazy thing is-  WE’RE NOT SICK!!!!

I have been able to take care of myself and not feel guilty about it.  It’s very odd, and NICE.  It is making me realize that maybe being Queen of the Universe is not necessary for happiness.  Maybe my body….and soul needs a peaceful, kind, quiet type of existence to thrive.  Maybe it isn’t about going to ALL THE THINGS but finding the things that bring your heart joy.  And being able to take the time to realize what those things are.

I keep waiting for the “cabin fever” to set in, but truthfully, I don’t feel like we’re missing anything by being inside, which may be the biggest realization of all. 

We are warm.  We are safe.  We are together.  We have food, beer, and toilet paper.

So yea.  I may have bitched about the snow, because I know it will inevitably turn into mud, and slush, and Scootzilla will probably get stuck, but as for being inside for two weeks.  

Well.  I can’t really lie when I say it’s been the best New England winter we’ve had so far.

And that’s the wicked truth Bub.