Friday, January 16, 2015

Is it Spring Yet?

I do this thing every year, when I just disappear from the blogosphere in the winter- mostly because everything just gets crazy and feels so overwhelming.  And I promise myself “I’ll write when I’m done,” and I withhold it from myself, because it feels like a matter of survival to get everything done.

What I’ve learned about myself though, is that that’s not fair, because I NEED writing to survive.  Just the feeling and the sound of the keyboard, I’m pretty sure lowers my blood pressure and makes me feel more energy, and more in control of everything in my life.  I can’t really explain it.

Another thing I’ve learned about my blog self, is that I tend to wait and try to write only when things are good.  Well… as much as that may make for a nice blog to read, it’s not accurate, and it’s not helping what I’m trying to do and be, which is create authenticity within the cybernet.  As I read recently, what you see on social media, is peoples’ highlight reels, so here is everything that got left on the cutting room floor…

The truth is.  This fall SUCKED. A lot.  While I am definitely a glass half full person, this semester put me in a place that I have not been in for a long time, which was kind of scary.

It kicked off, the last week of September I ended up in the hospital.   For stupid reasons and the whole thing was just entirely stupid and made me realize there is need for some SERIOUS need for policy change at one of the best hospitals in the world.  So that’s fun.  This was like the second week of classes. 

Following that, I had just gone back to biostats after being sick (yea, also, I took biostats…)  and my family suffered a huge loss.  We lost the nana.  Today is her birthday actually.

IT SUCKS.  I have never lost anybody that close to me, and for those who have, I am sure you get it, and I feel silly for being so na├»ve, but I was literally out of commission for 2 weeks.  I hung up the phone with my mother and just stood there, hysterical.  I couldn’t move, I couldn’t think.

I ordered tacos.  Nana would’ve wanted that.  Food and beverage are always the answer.   We needed food.  We needed to get on a bus to go to Maine.  I ordered a big pile of tacos since it was National Taco Day and we threw a lot of sweatpants in a suitcase and some black stuff.  It was easily the worst packing job I’ve ever done.  Then we went to Maine, and I didn’t know when we were coming back, and I didn’t care, and I already didn’t really want to.

The next couple of weeks were a lot of crying, and walking around hugging each other (prompting more crying). I stared at my biostats homework, pretending I understood it, pretending I could actually get something done.

I felt helpless, I felt sick, I felt exhausted. I felt like I had nothing left.  School just didn’t matter.
Eventually we came back.  It didn’t get easier, but I kept trying to get my head in the game.  I just didn’t care.  It was the worse case of academic apathy I have ever experienced.

It wasn’t that I had senioritis it was just… I didn’t see the point anymore.  I was taking 2 classes that I pretty much hated. Every time I felt like I was in control of something, and doing well, something would happen and I felt like I was taking 3 steps back. I wasn’t being creative, I didn’t get to really write anything all semester.  And I already had a job, or two.  I just, suddenly realized, I didn’t know why I was doing any of this. 

For the first time in three years, I actually Googled how to withdraw from school.

Eventually, the sister and I knew we had to rally, and we talked a lot and supported each other to just get through the final semesters.  (“We’ve always been overachievers Mal, now we just need to achieve.”)

So I did.  I’ve never quit anything in my life…  I don’t even think I can.  Is there like some sort of underachievement mentor that helps you like… drop out of stuff? I don’t know.

Then came the holidays, which were absolutely wonderful, on both sides.  It was very different and we continue to hold each other up to find the new normal, but it was exactly what I think we needed.  We just didn’t worry about anything, we relaxed and bought each other excessive amounts of material goods, and CELEBRATED. 

Now of course, I’m sick again, as is tradition.  So I spent the first 2 weeks of the new year, laying in bed, once again questioning everything in my life. I’m in a better place this semester and am working on a lot of things that excite me, and I’m writing like crazy which helps me breathe.

But all of this, everything that happened this fall, the time spent with family.  Seeing how the Nana lived her life, has made me start asking bigger questions.  Who am I?  What do I want to be doing? How should I live my life?  Where will we ultimately end up?  What makes me happy… what makes Owen happy?

If we’re being super transparent here… sometimes I feel guilty about the answers.  I really like going to shows and fancy restaurants, and taking trips and having nice things.  Of course I value people over stuff (but as a dear friend of mine once said “I really like stuff too.”)  I also have realized that not doing anything is totally addicting (except... I can't do nothing... even when I was sick, it was the most productive week I've had in a long time)

I don’t think I’ll ever be the kind of girl who can live in the middle of nowhere, doing the same thing week after week. I have no desire to go to Africa and build houses, or join the peace corps, or have 5 kids and buy a big house in the burbs.  Does that make me a bad person?  I'd like to think not.

And I think back to Nana, who bartended and volunteered and entertained, and traveled, and parasailed when she was in her 60’s.  She had a card party three days before she left us, and then when she realized she may not be able to do those kinds of things anymore- she decided she was done.

I guess it’s not in my blood.

So I’m not quitting.  And I’m not letting it break me.  When I finish school is when I finish. 

And before then.  I’m just gonna live life, the way we do.

Til Next time.

Friday, September 12, 2014

We Need to Talk. It isn't You, It's Me.

Today was a big day for me in healthcare

I asserted myself and said I wanted more out of providers if I'm going to be seeing them. 
Basically- I'm breaking up with a provider. But it wasn't anything serious. Metaphorically, we like met for coffee, once and I knew it wasn't going anywhere. 

Between just my life experience and my rapidly growing career in health care quality improvement I can't just go to appointments anymore to check them off the list.  I'd rather they not be on the list unless they are going to be helpful.

Especially if I am going to be billed for them or a provider is getting paid. 

Let's look at it this way. I didn't date in high school. Or college really. I knew pretty quickly there was nobody who could give me what I needed and I tend not to pursue things unless I know they're going to be worth it for everyone involved. Ain't no one got time for that. 

Anyway- like other things in my life, I am not ok with the status quo when it comes to my health. I have had providers who didn't want to change things because they were going "ok."  But what if I could feel BETTER? What if I had someone I could ask my questions to and who didn't just give me a blank state when I explained my condition. 

Well those people are in this city. I don't expect anyone to have all the answers. I don't even want answers necessarily, I just want to have the conversation!

Here's the dealio. There is now an army of kiddos who have MID and we have created quite a community. And let's face it, the sister and I are doing really freaking well. I don't need to know why necessarily- but shouldn't the doctors see the potential for this illness so all my babies can grow up and be amazing thriving adults like us? 

I'm also really involved in the genetics community and if nobody is talking about our condition nobody is going to want to research it.  A lot is going on in other countries- but ... We're not there are we? 

I'm a little nervous to go back to my old stomping grounds where some of the scariest things of my life occurred and just be there.... But I'm an adult now- and a professional, and it's time to get talking. 

So after this conversation I was told, "you should be talking to the people who are cutting edge." 

And frankly. I agree.

Let's do this. It's time to change the world, one micro villi at a time.  Even just for a few awesome folks.

Wednesday, September 10, 2014

You were bound to Fly Away

The song in Starbucks right now, “You were bound to fly away…”

I can’t write this stuff.

Except that’s exactly what I’m going to do.  So indulge me.

There is no more denying it.  Fall is HERE.  You know how I know?


Also, I’m wearing my Ralph Lauren fleece, because it’s cold.  And school. 

Which brings me here right now. 

This semester I’m taking a class at the College of Communications at BU, which I’m so excited for.  I get to write again and be creative, and think about other things besides how sad and unhealthy the world is.

Unfortunately, this class begins at 9:00 a.m., which for anyone who lives in Boston, knows is just ridiculous to even try to be anywhere for which is why most people just sleep at their offices (or get there at like 5….) or roll in around 10:30 when all the BU students are already where they need to be, and the B line becomes normal again.

Anyway-  the Comm School is 1.8 miles from my house… it takes me exactly 30 minutes to get to work which is downtown, at the very last stop of the train, so why would it take LONGER to get 4 four stops?  BECAUSE THE B LINE.

But also- because Scooter.  So whereas an average BU Basic would be able to squeeze in any old spot on the  train so they have to force the doors close- I don’t have such a luxury.  Last week, I left my house around 8:00… thinking I might even have time to grab a coffee, and THREE TRAINS LATER, I am on my scooter, in the middle of hoards of people, not even in the parking spot, or able to reach the button to tell the driver when I need to get off.  Total anarchy. I honestly went all 2 years ago and almost started weeping.  But whatever. #Blineproblems.  We’ll get there.

I’m also moderately determined to not need to have the “accommodations talk” with my new professor.  I’m not afraid to talk to her, and I’m no longer afraid to ask for help, but I don’t want to play the “scooter card.” I’m sure it will come up, and honestly that’s what I want to do my story on for her class- about what it’s like for a non-walking individual to get around this god forsaken city, and how it is NOT the fault of MBTA, but the general public who think that standing in your way staring at you while you’re trying to get on the train is actually going to make the ramp come down. 

I just want to show that I got this… I’ve lived here for 2 years, and go to work on the B line every day.  If I have to leave the house at 7:30 every Wednesday then gross, but I just need to put on my big girl journalism panties and roll with it.

But for now… here I am.  Drinking a latte, writing on my sparkly MacBook, remembering who I am, and what I’m passionate about, in a CITY.  Full of opportunity and people who want me to succeed.

Seven years ago, the beginning of September, I sat in a coffee shop in the small town of Farmington, with a journal, and tried to convince myself it was the same thing.  It wasn’t, and I knew it… but it was a step in the journey.  And here I am.

There is so so much more to write about, as I venture into this fall, feeling like the best Me I have ever been, but I just had to capture this moment and share it.  For all of my young college almost graduates who are cranking on your last year, just remember- the dream is out there.  You just gotta find it… and it may not be what others think it is.  Keep on, keeping on.

Love you all. 


Monday, July 07, 2014

What I Did on my Summer Vacation

I took a week off last week.

Like OFF OFF. the last time I recall having a legit VACATION, where I unplugged, and did not touch my work phone, or business e-mail, or call into just one conference call, or say I was “working remotely,”  Was probably when I went to Vegas for my birthday in 2011.  that was probably the last time I felt so refreshed, empowered and rejuvenated by a week off.  And this time, I didn’t go ANYWHERE.

I simply took the week and attacked everything that was stressing me out, and took care of me.  the first big step of this was not taking classes this summer, then once my fellowship finished it was just work.  I’m getting unfortunately accustomed to not having school work, so going back in September is going to be rough.  I have also made some choices however, that I think will benefit my schedule once school does start back up.  I have no classes, or obligations past 5:00 pm, once Fall comes.  Although it gets dark at 4 in the winter, there will be no chasing down transportation, or not getting home until 10 after my classes.  Owen and I can still maintain a reasonable typical work schedule, which I’m psyched about.

SO. What did I do on my summer “vacation?”  Nothing, and everything!

I read whole books, in record time.   For those who think I’m some politically minded, health care addict.  Stop reading this right now. And go away.  When it’s up to me, I’m a shallow, materialistic Vegas party girl.  You know what I read?  Here are my literary confessions:

My Life in Loubies:
A real housewife tale of a shallow chick who wants to marry into money to maintain her shoe addiction, but actually gets an interesting surprise- I was not expecting (and I usually predict these things, because I could probably just write one…)  

Jodie Sweetin’s (that’s right- Stephanie Tanner) memoir about her struggle with addiction and partying in the Hollywood Hills.  I was obsessed and finished it in 2 days.  Full House will never be the same, but yea.  It was good. No regrets.

And the hilarious, superficial, tongue in cheek, “I could’ve written this”  White Girl Problems.  Based on my favorite Twitter account, I buzzed through this one, flipping through my kindle problems on the T, in the back of black uber cars, and ok, even during the Red Sox game.  So sue me.

Along the self care route, I also got my hair and nails done, and get this-  I had lunch with FRIENDS.  TWICE!  And it was “let’s get an overpriced sandwich from the snack bar before class.”  It was afternoon margs, and actual sit down and talk about each other’s lives meals.  I truthfully do not think I have done that since I moved here.  It was AWESOME.

After one, we went SHOPPING!   We plotted which Michael Kors bag we’d get, whether or not it was on sale, swooned over Burberries we’ll probably never owned, and got foundation matched in Sephora and got matching mask variety packs.  It was a true, long overdue girls’ day that just put me on cloud 10.

The other girly outing was centered around interior decorating.  My neighbor, LEND classmate, and dear friend and I did some damage at TJ Maxx  then went to town on the Element Studio.  She made magic happen on our shamefully small closet, I put new 750 thread count sheets on our bed, and we hung things on the wall.  It looks like people live there now, and are not just hoarding a bunch of boxes.  Owen and I are SO happy.  I’m so proud of my little home!  It’s not longer an overpriced studio that was “all we could make work.”  It is our HOME!

Part of the reason (other than the fact that I was keeping myself up at night having OCD about all the stupid piles all over the apartment) was that Owen’s family came to visit, which was primarily my reason for taking the week off at all!  And man, did we see the city!  We went to a Sox game, a duck tour (so fun!!!! Can’t believe it took us so long), went to the aquarium, are planning to eat in the North End, and spent the fourth on a harbor dinner cruise!  It has been wonderful, and it is so nice to really know where we are now, and how to live here!  It was such a good feeling to really host people, and show them our city, and not just be like “well… I think this is nearby, it just may take us all day to get there.  We didn’t even go in a circle ONCE.

In addition to all of the above, I accomplished one other REAL success.  I managed to address, attend, or schedule, every. single. medical appointment or obligation that I had outstanding.  We’re talking, PCP, eye doctor, dentist, iron infusion, GI speciality, started medicine for completely life ruining stomach issues, and I even took the ultimate self care measure of getting a therapist, who I managed to see TWICE, just during my time off.  I believe in being super transparent about addressing mental health needs, because EVERYBODY has them.  It has been fantastic, and I have not felt this good in a long time!

So bam.  For all those times that there were not enough hours in the day, I finally just buckled down and stopped making excuses.  I can check all of those off the list, and basically, I should win some sort of prize.

Today I am back to work, but I am calm, comfortable, tan, and confident.  I am ready to lean into my new role, and this second half of summer.  I am taking care of me, and it is amazing how the rest can fall into place.  One thing I have learned over the last few years, is, as urgent as everything may feel, at the end of the day, if everything else were to go away, all you have is yourself, and if you’re not happy in that solitude, you need do some re-arranging.

Here’s to a happy, healthy, zentastic summer.


Saturday, July 05, 2014

A Night in Room 506

Things have really been picking up for us!  Owen is doing an internship, supporting with fundraising, and social media.   In addition to my “Day job,” which is undergoing a serious transformation because the whole organization is restructuring (a good thing), Face Forward is in full swing, and it looks like we are going to have an amazing turn out this year!!

Because of all of this, we have had some days where we had an obscene amount of things to accomplish.  One day, a couple of weeks ago, I had to bounce from meeting to meeting, and then switch gears for an event, and then a concert that Owen and I were going to, at House of Blues.

I must say, I was really proud of how this day went.  It was the first time in a long time, I have had to be in my multiple roles in one day, and I was able to feel fully present at every single piece of the day.  Then, at a certain point, I made one last phone call, and made the decision it was time to put it away.  Owen and I had the opportunity to debrief a little and unwind at the open house, I wisely remembered to actually print our tickets for the concert, and we took the train down to Fenway.

Come to find out, the concert started an hour after I thought it did, so we actually had even more time, but it worked out.  We had awesome “ADA” seating, high up, with a private bar, and a great view.  We weren’t next to the stage this time, which worked out because parts of the concert were SUPER loud (or I’m just old.  Those kids and their damn rock and roll!)

It was a fun night.  I found myself doing a lot of “Oooooh! I remember this song!  I didn’t know they sang this!”  And enjoying a ton of high school nostalgia, and basking in chart toppers that graced the ORIGINAL Now Album (yes, kids, BEFORE there was even a number in the title… I think they’re up to 51 now?)


After the show, we both felt remarkably energized, and I was starving.  Usually, when I’m going to a show, I like to get dinner before hand, and transition a little better than bolting from a work event, but we had done it, and now we wanted food.  No big deal I figured, these crazy kids go out all the time and now the T is open late!  Let’s do it!  (Side note- we did not even have a drink during the concert, all of these decisions were made at full mental capacity…. Just saying)

We settled into one of our favorite places, Boston Beerworks, and enjoyed sandwiches and their epic sour cream and chive fries, before heading back towards the B line to go home. 

We arrived at the elevator in Kenmore Square and hit the button.  It didn’t light up.  We hit it again.  And again.  Nothing.  Both of our phones were dead at this point, so I asked a kid nearby what time it was, and he informed me it was 12:38.
“I don’t get it.  It’s open later, isn’t it?”

Then we realized the gate to the stairs leading to the train was also closed and locked.  Oh no.

Of course, at this point, I also had my old/new completely NOT portable scooter, so there went any idea of ubering, and we also had NO phones to even complete such a task.

The funny thing is, a couple of years ago this probably would have ruined our night, caused panic attacks and we would’ve made some foolish decision like walking the two miles home because “it’s not that far.”  But at this point in the game, we just looked at each other, laughed and went “What the hell are we supposed to do?”

Luckily, we were very centrally located.  We were still near all the bars of Fenway, there were other people around, and there was a hotel right across the street.

“There’s a bus that stops here.  We can ask the hotel where it goes, at least.  There’s that.”

Without having much other choice we headed into the (ritzy, historical) Hotel Commonwealth to beg for a brief lesson in MBTA since we have only taken a bus once in the 2 years we have lived here.  Luckily, we did discover that the hotel was accessible, the woman was pleasant, AND it smelled delicious.

She looked up the bus schedule and told us that there was a bus arriving in 6 minutes, which would eventually end up a couple blocks from our house!  Perfect.  So we went back outside and waited.

Soon a bus pulled up, far away from the curb, and we watched anxiously as the driver turned off the ignition…. Put his coat on…. Shut the doors to the bus…. And left.

The bus was silent, and dark. The street was dark, and it was almost 2 a.m. at this point.  

We looked at each other.

After thinking for a minute we concluded we had two options.  “Well… the hotel is right there, so let’s see if they can call us an accessible cab, and we can actually get home.   Or, I mean, I guess we could just see if they have a room.”

Here we were, two miles from our home, both having to work in the morning, completely stranded, with no way to get in touch with anyone.  Planning FAIL.

We headed back into the hotel and waited sheepishly while the woman at the front desk finished with the phone call she was making.  Once again she was super kind to us, and called about a wheelchair accessible cab for us, before even asking if we wanted to stay, which I thought was great. 

Unfortunately, the accessible cab would’ve taken “around a 2 hour wait.”  TWO HOURS. On a Thursday night at 2 a.m.  What?  I also had this terrible image of an “accessible cab,” arriving, at 4 a.m. and not actually being what we needed, and we would’ve had sat there for 2 hours, when we could have been, oh you know, sleeping.

Had it been early, we probably would’ve challenged our city and seen what arrived, but at this point I just wanted a bed.

“Ok then, do you have a room?”

“We have one room left actually, with 2 beds, but it’s not accessible, is that going to be a problem?”

No, Ma’am.  The problem has already occurred.  The problem would be sleeping in Kenmore Square, since we apparently can’t read fine print on new transportation policy.

A few minutes later we were checking into a GORGEOUS, historical, non- ADA room at the Hotel Commonwealth.  Truth be told, the “lack” of accessibility really didn’t matter, because the room was huge. 

The other funny thing, of course, cause… oh hey universe, you so funny.  The room was #506.  Our apartment number?  506.

Almost home… so close, but SO FAR!

Without having toothbrushes or any other clothes but those on our back, we set the alarm clock on the bedside Kindle Fire, and climbed into the cloud of an Eloise style bed, and passed out.

And slept like a dream.  When the sun was up, we turned around, checked out of our room, and headed home to begin the day.

I’m considering a business investment, because the hotel got a stellar review.

Our solution?  Crazy? perhaps.  Impulsive?  Maybe.  But we were able to make it happen, it meant that we got home safely, and were able to take care of ourselves to be able to be productive the next day.

Lesson learned.  No regrets.