Another Rainy Tuesday

It’s raining and I have to get ready for work.  Whenever it rains, I get all diva and waffle about taking a car to work instead of the T, since I’m working downtown right now.  I need to just suck it up and bring an umbrella like normal city folks. Even though the T is like a sardine can when it rains.  It's not acid people.... we are not in the hunger games. I swear.

It reminds me of my very first day I ever had to commute to the BU med campus.  I woke up at like 5 am. And it was torrential downpours and hurricane winds.  I had never taken the BU shuttle or the route I was going to take and no idea wha I was doing.  I didn’t know where to wait for the bus and me and a bunch of undergrads were all shuffling around under inside out umbrellas, trying to figure out what the hell we were doing.  How far we’ve come.

I started to buy rainboots this winter but then I realized it was still cold, so I bought actual warm snowboots, and still no rainboots.  I should do that.

Last week I was sick and basically was home all week.  Of course I assume the worst and got checked for all the typical horrible things it could be, but I am not anemic, I have all my blood cells, and there is something terrible goes around that makes your stomach very unhappy and your throat sound like it is full of frogs.  Or something.

I was able to work from home which was super nice, and made me realize how much I miss doing that all the time (but I do like having an office… the grass is always greener), and I stayed home from all my classes.  Basically, I suck at being sick.  I felt like I was committing some sort of crime by not going anywhere because I wasn’t THAT sick… like, I wasn’t actually IN the hospital. And contrary to popular belief I don’t actually ENJOY accessing health care.  It is not fun for me to try to explain to nurse practitioners that it doesn’t matter what I eat and I just need to make sure I am not anemic or my organs or failing or anything.  But plenty of people were able to confirm I didn’t have strep.  So that was good.

But basically, all week, I had to keep telling myself that it was legitimate that I was home and the only way to get better was to actually rest.  So shut up self.  So I did, and it was really nice and now I actually feel better!

One thing I did accomplish that I am super proud of is: I MADE SOUP.  There was one day when Owen wasn’t feeling super stellar either and I was home, and I realized we had chicken, a crockpot and lots of organic, fresh veggies, so BAM.  Soup happened.  And it was delicious. I actually believe it helped us feel better

I used this recipe

but we used angel hair, instead of egg noodles.  NOM NOM.

This past weekend, we took a bus to New London and had a quick retreat with my family to see the baby sister in her last college dance show!  It was fabulous.  

We had amazing food, and stayed at a cozy little inn that had actual KEYS for the rooms and a “parlor” where you could sit and drink tea and mingle with people like you all just lived there.  It was a great little break, and then Nana got to come see our apartment in Boston, and we all hung out in the media room (that we forget we have) for a little while before they had to go back to Maine.

Now it is all about the next few weeks and busting ass to get through the rest of my classes, then SUMMER! I can’t even believe how fast spring is going, oh my gosh.  I keep imagining there is another week in April… and there is definitely not.  And I have so much to do!  But somehow… it all gets done!

More soon.  There is so much to talk about, but I gotta run.

Make the most of your rainy Tuesday!

Cheers

Think I'll go to Nashville- ACMG 2014

For those living under a rock, Owen and I were in Nashville a couple weeks ago, for 

the annual American College of Medical Genetics Conference. YEEHAW!

a.k.a. A vacation. So nerdy right? A week of genetics, and consumer engagement, 

and we count it as vacation. Well, I can’t remember the last time I traveled 

anywhere for almost 7 days, I took time off, and figured we might as well make the most of it! 

And we did! I didn’t have high expectations, because it was a genetics conference, 

but it really turned out to be the perfect balance of “work hard, play hard,” which I 

feel like I am only now beginning to master at conferences!

This was the first conference in a long time where I felt like I really gained from 

attending. The last couple of years, have been spent flitting in and out to present, 

listening to the same old workshops, that I could basically recite in my sleep. While 

I love presenting, and we did present at this conference as well, it was so refreshing 

to LEARN! We learned, we laughed until it hurt, we thought until it hurt, and we made friends! 

One of the things I realized contributed to what I got out of this event, and probably 

what I gave as well was that, for the first time in many years, I felt like I was there 

as ME. For the first time, I introduced myself at a meeting with all of my roles- a 

student, a LEND fellow, my day job, a consultant on a national center, a program 

coordinator for Next Step, and a young adult living with a genetic condition. 

Breathe. 

And at that moment, I felt this sort of weight be lifted from my shoulders for the 

week.

I can’t really explain it, except it was just liberating! Being able to share my thoughts 

without worrying about “representing” anyone, even though I was representing 

everyone- I was invited as a consumer, and they wanted me there for ME.

The first day, we attended a meeting of the national transition work group, which is 

comprised of the people all over the country doing the REAL work for young people 

with genetic conditions who are in the process of transition. It was the best meeting 

I think I have ever participated in. The time was well managed, everyone was 

acknowledged and respected, ideas were shared, and we left with action steps for a 

national project that stemmed from our ideas! ….a potential practicum, hmmm… It 

was just dynamic.

The next day I had a long day in a meeting for the regional genetics advisory I’m on, 

reviewing mini grant proposals (love, love love, such a geek) Then we presented on 

panel for a “Community Conversation,” with some incredible providers who have 

done great work in transition and positive youth development. We talked about the 

impact of programs like Face Forward, and our own experiences just living the life. 

Some of the questions got pretty intense, but I love it. This conference was a collage 

of all the things that I DO love about this work, as messy as it can be.

One thing that I think neither of us really expected from this event was how 

“affected” we felt by the whole thing. Genetics is really emotional shit. Ethically, 

spiritually, economically, just. There was a lot of processing and napping.

And the exhibit hall. First of all, this is a conference for providers. And Companies. 

Which means serious budgets for ridiculous exhibits. 

Owen and I walked in and realized we had just stepped from District 12 into the 

Capitol. There is no other way to describe it.

All of these booths advertising products, and methods, and tests… to prevent 

“errors.” “Mutations.” “Tragedies.”

People.

I know, I know… it is not mal-intended at all, and these people were kind, and many 

of them spoke to us, and some really took the time to teach about different screening 

processes and I learned a lot. But something I found really interesting was the 

initial question we got was when we were browsing exhibits and networking was 

“Do you work in a lab?” or “Are you a genetic counselor?” which I thought was 

funny, because we felt like we stuck out like a couple of sore thumbs at risk for 

possible elimination if we weren’t too careful, but everyone else just knew we had a 

reason to be there. It was like odd, reverse role assumption….

But I just responded confidently “No, we’re in the consumer leader’s program, trying 

to learn all we can to better advocate on behalf of youth and families living with 

genetic conditions.”

But I sort of wanted to say, “haha, actually, we’re what you’re trying to avoid… “

Super awkward right?

SO MANY FEELS.

Nobody wants to sit here and read how I feel about all the issues of genetic testing, 

newborn screening, and the ethics behind reproductive “technology,” and frankly, I 

am still sorting through it all, and figuring out HOW I feel about it. Perhaps it is one 

of those things I will never really know. I do know that I was a strong advocate of 

recognizing that for many people living with genetic conditions, it is about quality 

of life, not finding a cure, and that needs to be recognized. An advance in medical 

treatment may not be the best answer for all people. I’m a fan of technology and 

scientific advancements, but I will not sit home refreshing the interwebz waiting for 

a cure, or something that might remove my disease but sacrifice my quality of life. 

Mama’s got shit to do.

The other time my mind was a tiny bit blown was when I attended a session about 

pregnancy for women with skeletal conditions. It wasn’t until the presenter 

mentioned my bone condition, which I totally forgot even had a name, because 

nobody knows about it (except, upon further research, Danny Devito has it as 

well- DANNY DEVITO, I LOVE YOUR WORK) that I was like “oh man, this just got 

relevant.” At all the events where I feel like I don’t have a “group,” I realized… 

perhaps… this is my group!!! And I felt that way all week!

I may or may not be plotting a poster abstract about MID (Microvillous Inclusion 

Disease) and the research that is currently being done, just to get our name on the 

map!

Aside from that. Here are some more lighthearted things I learned on my 

GeneticsCation in Nashville:

• Tomatoes are just better green and fried.

• Smokey whiskey bloody marys. Yup.

• Line dancing should happen whenever possible.

• South does not = warmer weather. 

• I’m obsessed with the Omni Nashville hotel, and will be returning to use the 

roof top infinity pool (check out my full review here)

• There is a laid back country girl in this complicated Gemini who felt at peace 

and relaxed for the first time in a long time.

• I know more than I think I do. Someone said to me at the conference- “You 

know, you are really smart.” And it was nice to hear. Sometimes I just feel 

tired and defeated…

• Genetic Screening companies have sweet conference swag! Tote bags that 

zip? Plastic sperms? G-gnomes. Hook me up.

And the final thing I learned after a week in Nashville was that Owen rocks, and we are an amazing team. We  had such an incredible week- as colleagues, as best friends, as partners. Sharing 

our story in different settings, both networking for our own paths, learning about 

country music (me getting’ schooled)… and being able to process all of this together. 

Truthfully, had I gone to this event by myself, I probably just would have sat in the 

hotel staring straight ahead, feeling completely overwhelmed. But with each other, 

we were able to strike a balance, and know when it was time to step away and have 

some fun, and when we needed to debrief.

It was just awesome. Nashville, and the genetics world. You have not seen the last 

of us.

Happy Meetiversary!

Happy St. Patrick’s Day!  

If you are in Boston, I hope you are recovering, as apparently the festivities began like… Friday.

I am old however, and spent Friday night in bed watching the old John Goodman movie, the Flintstones!  I had that on VHS…. recorded off of the TV when it aired during TGIF or something.

The heat in our apartment was also being weird, so it was too cold to move (aka, below 75) and I felt like I was glamping.  Not a fan.  Luckily it’s back on track now. I swear sometimes things in this house just exceed my technological capacity to understand.

Saturday however, we went out.  I came home from some spring self care in the form of a pedicure and Owen had laid out an outfit for me on the bed with a note that said “Dinner at 7?”  We had discussed this before, because I guess he had seen someone else do it and someone commented that it was controlling and creepy. WELL.  I still believe in chivalry and being treated like a princess if someone desires, so I found it super romantic, and I was SO excited that he asked me out! Hooray!

We went out to Shang Hai Social Club, which is across the street from our apartment, and reminisced because it was 3 years ago today that we met.  I can’t believe it has already been that long.

For those that may not have been following us since the “beginning,” I thought it might be fun to recap and tell the story of how we met, and ultimately ended up together.  Again, I think it’s pretty romantic.  

First of all.  We did NOT meet online.  I get asked that so much, and although kudos to those people who can find love on the interwebz, we met in person.  I was a keynote speaker at a health care transition conference in Las Vegas that Owen was helping to plan.  This is WHY it is important to fund youth to go to conferences, just saying!

However, right before the conference, I ended up in the hospital. I was terrified to even tell the people organizing the conference, because the year before, I was supposed to present when it was in Reno but there was that horrible storm in DC and I had to present on Skype. All day.

so technically, Owen met me on a JUMBOTRON (ok, an overhead projector… but similar), before I met him.  Never again.

Luckily, I was sprung from the hospital, on 2 antibiotics, and destined for St. Patrick’s day in Vegas.  Woo.  Hoo.

The conference ended up being one of the best ones I’ve spoken at to date. I won’t bore you with all the details, because I already wrote about it here:  http://curbcutsandcocktails.blogspot.com/2011/04/vegas-kansas-and-family-oh-my-part-1.html

But it’s interesting how I totally left out the entire first night!!  I had gone to this conference for the first time with the attitude of “I don’t care if I meet someone, I’m doing this for me!”  And you know how it is said as SOON as you adopt that, BAM, love.

Truthfully, and as Owen will tell you, I wasn’t super nice when I met him.  It was like 7 a.m. in the room with the continental breakfast and I was just trying to find coffee… which of course I couldn’t reach when it’s DIY (FYI, DIY coffee in hotels is one of my biggest pet peeves.  Just let me sit down and order a latte.  Yup)

My mom was traveling with me, to help me.  So I kept trying to find her to attempt to string together the words “I need coffee,” but she was preoccupied with me meeting some guy.  so I did.

“Mal!! This is Owen!”

“Oh.  Hey.  Can you help me get coffee?”

Over the course of the day, I just had a blast.  I kept my eye on Owen for some reason, as he clearly had a ton of friends here, and oddly they all kept trying to get us to interact.  

Truthfully, I don’t even remember much of the first day except that I was just comfortable, had a great time and made some friends.   Then we went back to the hotel.    

I did my IV antibiotics, woke up from my Benadryl nap and my mom and I began discussing the plans for the night, as it was St. Patrick’s day, and we were in Las Vegas.

I had seen it was Karaoke and “Lady’s night”  across from our hotel, and since we weren’t actually on the strip and still needed to get up early for the conference the next day, I wasn’t up for too much of an adventure.  

“You should call that Owen kid and see if he wants to go with us.”  My mom suggested.

Um, what?  There was not so much any problem with inviting our new friend, as I wouldn’t mind having someone in my own demographic to revel in the St. patrick’s day craziness with, but she wanted me to CALL him.  Lke pick up a phone and speak to?  With words?!!?!!

Another thing people don’t often know about me, is that I have significant phone anxiety.  I have actually memorized peoples’ numbers before because I just stare at it for so long trying to psych myself up to make a call.

“Yea, sure, he’s alone here.  Don’t be rude.”  

Ugh.  Ok fine.  

“Hi, um, we’re going to Scooter’s pub for dinner, and it’s lady’s night [which obviously he cared about!?!?!]  and karaoke… so um, you should come.  Cool, see you in 5.”

Which really meant 10, because now I had to put eyeliner on.  Thanks mom.

For some reason, I remember feeling nervous, and I had no idea why.  Perhaps because as I was trying to enjoy my grilled cheese and pile curly fries (the ultimate “I don’t care what you think of me” meal)   My mother was grilling this poor boy about his future plans, interests, and family history.

At one point she said, “How many Broadway shows have you seen?”

Owen paused for a second, apparently counting in his head, at which point my mother turned to me and not so silently mouthed, “HE’S COUNTING.  THAT’S A GOOD SIGN!”

but secretly, I was intrigued as well.

After dinner, we moved into the bar area where the festivities were occurring.  I remember, they had only really high pub tables, which simply weren’t going to work for us.  But we were not about to hang our head and go watch Spanish cable in our hotel room.  The bar was amazing and actually brought us a table from the dining room so we could hang out.  Looking back, maybe all of Vegas was in on this little plan.  I have no idea.

At one point, my mom said she just needed to take a picture of Owen and I together.  We leaned in for her multiple cell phone photo attempts, and once she was done, I realized Owen still had his arm around me.

What do I do?   Well… duh…. I got up and sang my girl Britney’s “Oops I Did it Again.”  There was no doubt I had.   Now I was just having fun.

The night progressed, the drinks flowed, the bad karaoke filled the bar.  Owen was quiet, as he is, but we bonded quietly, mostly judging the antics of others and analyzing our drink choices, but there were times during the night I remember just thinking, “there is something about this kid… I just don’t know, but I feel like he is significant…”  It was unspoken.

Then, as if on a perfect episode of the OC,  a song came on in the bar.  An epic throw back to Oasis, Wonderwall.

There are many things that I would

Like to say to you

But I don't know how

Because maybe

You're gonna be the one that saves me.

We both glanced at each other, knowing this night would not be the last for us.

The next day was the last day of the conference,  and one I spent basically teasing Owen.  I tried my signature move of putting my number in his phone, but he had a phone I had no idea how to use and failed miserably.

Throughout the day, people who knew Owen and who I had befriended, cornered us separately and asked us about the other person.

We lived across the country from each other, I had no idea what I wanted in life and couldn’t understand how this would possibly work out, or why people were pushing it so much.

At the end of the day, somehow Owen and I ended up together, alone, trying to find our way out of the conference center. Random people kept stopping and asking if we needed help.  One person even asked us if we wanted tea.  I just remember laughing so hard, and Owen and his quiet one liners, made me start to wish we weren’t leaving.

I was staying on the strip for a couple more days after the conference, and Owen had to leave.  My mother had come down with a horrible stomach virus and had to check into the hotel early, so I got a ride with one of the conference staff who was also bringing Owen where he  was going.

With work behind us, we drove with the windows open, Kesha on the radio.  Soon we pulled up to the valet parking of Planet Hollywood.

“Well… it’s been fun.  You have my number, use it or don’t.”

and I went into the hotel.

A few hours later, as I was getting ready for a night on the strip, Owen texted me.  “It was great to meet you. I hope we get to see each other again.  You’re amazing.”

Truth be told, the first thing that made me raise my eyebrow was the PERFECT use of grammar! Who does that?  No “u” or “l8r”... again.  I was intrigued.   I smiled to myself, replied, and put my phone away for the evening.

It wasn’t until 2 months later that we saw each other again, but Owen and I had talked a lot after that.  We talked online, and texted, to the point where we knew something was there, but we didn't want to confirm anything over a text message that couldn’t be taken back. After all, we had only met each other once.

Memorial Day weekend, I was going back to Vegas for my birthday, and for anyone who is not from Nevada, you know that basically, Nevada is Las Vegas.  Duh.

Having this belief, I told Owen I would be going, and if he wanted to come hang out, it would be great to see him again.

This was the clincher.  Not knowing if he would ever have another chance to see me, he booked a room, a flight, and flew to Vegas, just to see me again.

I was staying with a friend in our hotel, and Owen and I got there first.

Within moments, and cracking our first Corona, it was like we had never been apart.

I can’t explain those 3 days except to say, I had never felt that way before.  I had never felt such happiness, such confidence.  Sitting by the pool in Vegas, I didn’t care what was going on around us, or what other people looked like. I felt beautiful, I felt unstoppable.

I think I laughed and smiled more that week than I had in years previously.

Our last night in Vegas, Owen and I “walked” the strip.  Then he took me out to dinner and gave me a necklace.   Finally, as the night turned to day, we asked the question, “What are we doing?”

One thing that brought us together, was our belief in not playing games.  We both believed that life is too short to not know what you want, and we didn’t want to be a “thing.”  An unspoken, gray area of feelings and confusion.

3,000 miles is room for a lot of gray area.

So I closed my eyes and jumped.   And that was 3 years ago.

And you know what?  I still feel that way.  We are not always by a pool in Vegas, but I still laugh, and I still beautiful, even if it’s just a Saturday morning and I’m in my BU sweats.

We decided that we probably don’t need to document, every single year anniversary that we met, except for like… 5 years and 10…. but I thought it would be fun to relive the story of how we actually met and fill in some gaps as to how we got where we are now!  

Maybe Owen will tell his version one of these days :)

3 years, and going strong.  No regrets.   

New Bloggitude and True Confessions:

I started this blog in 2005.  I can't believe it turns 9 in a few months! 

Needless to say, I was a completely different person back then. I feel like I'm a completely different person every time I take a long hiatus from writing.  After my last entry my mom asked me, "Aren't you going to do a catch up post?"

Well. The truth is... It has almost been A YEAR. I can't effectively "catch up" on everything that has happened.  But what I can do, is write about what I (and we) have learned and what I want to do with this blog moving forward!

What I will say, is, it has been an AMAZING year. We have come SO far, learned so much, and I really feel like we are living life here- not just figured out how to safely exist and how to not fail school. 

Over the last year, and specifically since the fall, I have had some serious realizations.  Safe to say some huge, possibly terrifying realizations that feel almost like confessions. Some of which may change people's perspectives of me. If that's the case, I probably have already unfriended you anyway.  I also believe the key to anything- policy change, program success, any healthy relationship, is honesty and transparency.  I can no longer maintain this blog if I don't acknowledge my whole self and how I feel about things

In September I began what's called a LEND fellowship.  It stands for Leadership Education in Neurodevelopmental Disabilities.  It is an intense 9 month program in which we learn about policy, leadership, genetics, law, etc all having to do with disabilities. It is Super intense but also wonderful, and it has brought me some incredible friends, colleagues and opportunities to make these self discoveries.  

So let's just get to the nitty gritty.

True Confessions of 2014:

1. I had no idea what "public health" was when I applied, got accepted, or began attending school. 

I suppose I should have taken a hint from myself when my grad school essay was about how I am not entirely sure how I ended up here and I was never one of those people who grew up with the goal of wanting to "help people."

Beyond children with special health needs, I had no idea what public health was. I truly wonder at this point if I were not at BUSPH with some amazing mentors, if I would still be in the program.  I have no interest in babies, and I often struggle with the idea that it somehow became my job to "change the world". Simply because of the path I followed to get where I am.

I have had conversations with some of my peers who have disabilities who have asked the same thing. How did we get in roles working with other people with severe disabilities (with little to NO training) simply because of what we have accomplished in our own life?  Does it make us bad people to say "um, white flag! This is not what I want to do!"  How is it different from a non-disabled person saying "I want to go into finance, not be a doctor?"

I think there is a certain snowball effect of advocacy in which people speak at one conference or show competence in one area (even just advocating for themselves) and others rely on them to be the voice of a generation.  No pressure or anything.

Are there different expectations for people with disabilities to "change the world?"

Recently I have been asked in a lot of my classes "what are your values?  What do you stand for?"  

*cue FUN music video*

And yet there is also an unspoken expectation that these values must be similar to everyone else who is here to "change the world"....

2.  Sometimes it is just too much. 

This is MY LIFE.  To quote someone I learned a whole lot from this past winter when we were discussing advocacy and looking for accessible housing, she had told her real estate broker, "this isn't fun for me.  I just want to be able to get in the door"

And I realized that sort of summed up my career. I am not in health care/ advocacy because I think it's fun or interesting. I am here because I have HAD TO BE. I am coming at this from a whole different perspective than my classmates. I didn't pick up a grad school brochure and decided I wanted to go to food banks or join the peace corps. I am here because of the work I have had to do FOR ME.  And when I am done my jobs of changing the system and my classes of learning about health disparities, I can't PUT IT AWAY. I then have to manage my own health care.

Recently we were told an assignment was supposed to be "fun."  It was something I already do for a career and often get compensated for.  Pretending to help an agency is not fun for me. It's a way of life. 

And it gets exhausting. And it's consuming. And it's depressing.

It makes you forget who you are. I know many people in the disability community who cannot answer "well, what do you LIKE to do?"  Because we are not asked that anymore. 

I also know people who cannot have a conversation or a Facebook post that is not about civil rights, access or how everyone is ignorant about disabilities.  And frankly, I'm just over it. 

3.  Now that this blog has begun to resemble a total off the hook rant, I want to tell you my purpose moving forward. 

And so everyone doesn't now think I'm a heartless bitch, ice queen (if you do... Again, I respect your opinion) 

What do I believe in?

• I believe that all young people should be able to do whatever they want for their future.
• I believe in self care for all the people changing the world, not just the execs who can afford "work retreats"
• I want all young divas and gentlemen to feel loved and attractive no matter if they are in a wheelchair or not.
• I believe people should have access adequate healthcare and insurance without being completely broken by the process of trying to obtain it.
• I want to be able to pick up an issue of Glamour or The New Yorker without being judged for my decision. 

I want to recreate this blog. I want to tell you what I believe in, and I want you to know ME.  I want to celebrate and enjoy how far I have come instead of burning myself out on far we have to go. (Because trust me... I know)

Owen and I have made a goal that this summer will be about pursuing our interests, discovering what we "like to do" and who we are outside the "advocacy world."  And I want to take all of you along for the ride.

Hi. My name is Mallory.  I am getting my masters in Public Health at Boston University.  

I live with my amazing boyfriend of almost 3 years.  I love shopping, fashion, sushi, traveling or having a good staycation in our incredible city.  My family lives in Maine, and I now am in a long distance relationship with my diva cat Muffy. 

Summer is my favorite season, and I have been told I seem happier when I'm blonde.

We like going to movies, drinking beer, and making the most of every moment. 

Oh.... And sometimes we need to find an elevator.

.... I present to you.

Curb Cuts & Cocktails.

Xoxo