Marathon Monday 4/15/2013

One week ago today was our first “Marathon Monday” as residents of Boston.  Not being much of an athlete, I didn’t think much of it.  Then, as I realized it was quite a big deal for the city, I began secretly googling “What does one do on Marathon Monday?”  to see if I indeed, got the day off, or should imbibe with some Sam Adams at an inappropriate hour.

After I gave a speech for Team Hole in the Wall:
 

 however, I was given an itinerary and an invitation to join them at the “cheer zone” near HeartBreak Hill.  I thought the most exciting part of the day would be taking the B line to the other end, and seeing a BC student peeing in a corner of the sidewalk (stay classy BC)….

What I did not anticipate, was this day becoming one that would become a part of history for our city… and our country.

The morning after my speech, at Maggiano’s, a block or so from the finish line of the race, I walked Owen to the T stop to see what the weather was like, treated myself to a sesame bagel and butter pecan coffee at Dunkin Donuts (far better than the Irish Crème, ps) I decided to make the trek and join the camp team in cheering on our runners.

After a series of events, and a broken elevator, Owen ended up leaving his venture to work and meeting me at the B.C. stop on the green line.  We trudged up Heartbreak Hill with Hooptie and Scootie until we found the Cheer Zone.  We quickly donned “Team Hole in the Wall” t-shirts, tattoos, grabbed noisemakers and the day had begun. 

As I sat watching the runners, of all ages, and all abilities, and the crowds that came out to support, whether it was a hoard of college students just looking for an excuse to drink at 9 a.m. or a family with emotional hand written signs of encouragement, this was truly a big event for the city.  I felt such a connection to people I didn’t even know, and felt fortunate that I got to share in this journey of theirs- the result of months, maybe even years of training.

At about 2:30 p.m. the runners began to thin out, and the sun had gone behind the clouds.  “Are you ready to venture back down our way?” I asked Owen.

Owen: “Yea sure.  Do you want to go to the finish line?”

Mal:  “Ummmm, I don’t know, it’s probably going to be a mad house down there, and I haven’t even taken anything out for dinner.  Let’s head home first and see if we want to go out again.”

So we headed back to the B line.  As we boarded the train I got a text from my mom.  “Are you ok!?!?”

Confused, I began texting her back, but my phone rang as I was typing.  “Where are you, are you ok???” she asked frantically. 

“Yea, we’re fine, just getting on the train to head home, why what’s going on?”

The news had just broken.  I hadn’t had my phone out much that day except for the occasional facebook update, but it never occurred to me to keep up with twitter to see if tragedy might strike.

“There were explosions at the finish line.  It’s bad. Where are you??”

I reassured my mother we were fine and hung up immediately to check on the camp volunteers we had planted at the other end of the race.  Everyone was fine, except for witnessing the horrible event, and moments later, we were evacuated from the train and the city’s entire transportation system was haulted.

I called a couple of our “go to people” in Boston just to tell them what was going on and where we were, having no idea how we were getting home or what might happen next, then we just began wandering.  We stopped for a few minutes next to a construction vehicle, and he turned up the news on his radio for others to hear.   They described the scene at the finish line, and I broke down in tears.  “We just have to get home,” I told Owen. 

I asked an officer (or somebody with a neon vest) when the shuttle bus that was supposed to be replacing the train, was arriving, to which he responded “I don’t know nothin’ about no shuttle bus.  All the roads are closed.”  And he spit on the ground.

Thanks sir, for your support in my time of need.

“Let’s start walking I guess.”

Not knowing what else to do, and being in pure fight or flight mode, we just took off down Comm Ave towards home.  The streets were eerie.  Everyone was on their cell phone, crying or trying to comfort their parents who knew they were somewhere at the race.  Drunk B.C. student sauntered back to campus.  One thing I’ll never forget, as we passed a “hydration station” on the course of the race, the entire volunteer team, about 20 people in neon yellow jackets and white hats, sitting in a row, on the ground, silently looking at their phones.  I wish now I had taken a picture, but it’s one of many images that is permanently engraved in my mind from that day.

We kept “walking” and the sidewalks got more broken, the hills got steeper and the wind got more brutal.  Finally, we saw a Best Western and we decided to just hang out there and see who could come get us before we ended up in the middle of nowhere with a dead scooter battery and no cell phones.   The Best Western university let us hang out as long as we needed to and I was able to plug in my phone as we watched the horrifying coverage on the news.

I called Bill, who lives in Cambridge and explained the situation.  Since then, I have mapquested the entire path we took from where we were at the Cheer Zone, to the hotel, and poor hooptie and scootie ventured about 4 miles before we surrendered.  Perhaps next year’s marathon is not so far off.

Bill texted me back that he would find a way to get to us, and they were buying the first round.  I hugged Owen and said, “This is why we’re here.”

After navigating the mess of Comm Ave, we were back in Allston and had a comforting dinner and a few drinks before Bill and Nancy brought us safely to our apartment (with 2 more bottles of wine)

“My god, with everything that has happened since you guys have been here, you’re gonna need them.”  Nancy said as she loaded up Owen’s backpack with a Pinot Noir and Chardonnay.

As the week went on… we did need them.

Now- just to back up a second- I am not going to go into the details of what happened, or link to media or news sources.  Google it.  It’s all out there, more than you probably want to know or see, and regretting some of the links I have clicked in the past week, I will let you view with your own judgment. This is simply my account of the events…

Tuesday, we didn’t go anywhere.  I told Owen as long as there was heightened security anywhere I just wanted to be together.  I needed him there.  I barely slept after the events of the day before and still jumped at the slightest noise.

Wednesday was a better day.  My parents were in Boston, and I was able to have lunch and an early beer with my dad. I have never been so relieved to see my father.  We had a coffee in my apartment (“Dad, it’s 10:00… we need to wait like an hour before we can go anywhere for brunch…”) and I got to show him a bit of our neighborhood before we settled in at Tavern in the Square by an open window.  It was a beautiful day in the city, and it reminded me that we were ok, and things would go back to normal.  Dad and I talked a lot, and he got that scrunched up face he gets when he’s trying not to cry, a couple of times.  I sort of just wanted to go home with them.  But I knew I couldn’t.  Then fear would win.

Thursday, Owen and I both resumed normal activity to the best of our ability.  I participated in a transportation training, which was actually really informative, and another reminder that there is so much good in our city, and people do want to make it possible for people with disabilities to be included, and successful here!  Then I went to the Next Step office, mostly to be around people, and immerse myself in something other than news and worry.  The day ended with some amazing craft beer at our favorite tavern near where Owen works, and a toast to the week being almost over.  Or so we thought.

That night, we went to sleep just after hearing about the shooting at MIT.  Refusing to jump on the mass hysteria wagon I assured my mother that once again we were ok, and passed out into a broken sleep.  My phone continued to vibrate all night and I knew I was getting emergency alerts from BU, but my heart couldn’t take it.  I opened one eye and thought “There is nothing I can do right now, and I just.  Can’t.  I’ll see them all tomorrow.”

Sure enough, what we awoke to Friday morning was NOT what I expected at all.  The entire city was in lockdown to find one individual who they believed to be the perpetrator of Monday’s finish line crime scene. So much for sleeping in.  I didn’t even want to take a shower, in case we needed to evacuate or an officer came to the door.

Let me say-  it is one thing to see all of this stuff on the news.  I am still recovering from 9/11 truthfully, but it is a complete other level of horror to know this happened WHERE YOU LIVE.  We didn’t open our shades that day.  I was reassured when the newscasters explained a lot of the lockdown was so that the law enforcement could focus on the “manhunt” and not have to worry about traffic or other behavior of people just being idiots in general.

But still.  Transition be damned.  Planning and preparation?  There is NO tip sheet for this shit.  We hugged a lot.  I was exhausted but couldn’t sleep.  I made us egg sandwiches but I didn’t want to eat.  We just waited.

After a whole day in the ghost town of Boston, the suspect was discovered, and the whole city breathed a sigh of relief.

We had a glass of wine.  But we didn’t celebrate.  We shared that sigh of relief, but it was also a sigh of sadness.  I have so many thoughts and emotions from this whole week, and it will take me months, maybe years to process everything.

Here is what I do know:

• First and oh so foremost.  Thank god.  All the gods.  Thank whoever you know up there, and whoever continues to look out for us, that we were safe and that we were together.  That we were not at that finish line.
• Social media is such a blessing and a curse in times like these.  I am so glad we were able to instantly update 600+ people that we were home and safe, and I could contact my sister even though she is in another country.  However, it also fuels the fire of ignorance and false security.  News channels, do we really need the general public to weigh in on what we think the motives of these individuals were?  Why are engaging in the mass hysteria?  Let the professionals handle this, and be adults about it.
• Boston kicks some serious ass.  I had been waffling about whether we are meant to be here, and what it’s all about but watching the courage, and love, and sense of community at that race, even before the tragedy.  I dig it.  As horrific as the whole thing was, I am proud to be able to say, years down the road, “We lived in Boston.  We remember what it was like to be on lockdown and to hug and cry when it was over.”  Owen’s nieces might learn about this in history class some day.  These are our stories.
• My heart is confused.  Yes, this man committed a horrible crime.  He and his brother inflicted terror, and damage on hundreds of people, that cannot be denied.  He also is the same age as my baby sister. My heart breaks about all of it.  This is a failed transition folks.  He had a promising future, he made some poor choices. REALLY poor choices, but he is a kid.  Picturing him in that boat just hiding from police, I can’t imagine what was going on in his head.  No, I am not defending him, but good god. I just don’t know…
• As proud as I am of Boston, I am ASHAMED of our country.  When the young man was captured, the streets erupted with celebrations, cheering, and chants of USA.  What?  Do your homework folks… he was a US citizen.  He was a college student, with your sons and daughters and friends!  This was not some terrorist bombing from a country far away, this was a neighbor of yours.  I know that is probably scary to admit, but it’s true.  Just because you can’t pronounce their last name, does that make it different?  What if it were a white man named Mark Smith…. Or Timothy McVeigh.  Oh wait.  Terrorism is terrorism.  Why do we need to play the race card?  So much of what I have seen on the internet, and people’s reactions is full of ignorance and hate, and it is disgusting.  People are saying this young man should not receive health care because of what he did.  Hate to say it guys, but he was a student, there is a good chance he has insurance, and guess what- he is going to get billed like everyone else. How will they have a chance to question him, or him to learn from what he did, if we don’t care for him.  As Boston, the mecca of health care, that is the job of our medical professionals.  We are America. These are not the witch trials.  Remove heads from ass, then speak. Or don’t.

Do I have all the answers?  Hell no. I am simply grateful that all of my friends and and family are safe.  I am exhausted, I’m sad, I’m still a little bit scared, but it will get easier as the days go on. I am reminded ONCE AGAIN that time is short, and we can never miss a chance to say what we are feeling or take a chance.

The biggest thing I have taken away from this week, after the rollercoaster of emotion, fear, hope, strength, this is the journey. Our journey. The moments that make us who we are.  For better or worse.

As that finish line proved, maybe it really isn’t about the destination.

#BOSTONSTRONG

Homesick at 10,000 Feet

Hello.

I'm on an airplane.

I'm on my way to Alabama, to present at a transition conference.  In October, I am going to Arkansas.  It's kind of cool getting to check off some states I haven't been to yet.  After going to New Orleans, I realize I think I really like the south, so let's cover the bases, shall we?

Today, I set my alarm for 7, but I woke up at 6:30, and realized it was probably silly to try to go back to bed, so I made some coffee (southern pecan, to set the tone for the day) and went on the interwebz.

It never ceases to amaze me as to what small things can feel like a punch to the gut sometimes.

I won't lie. I wasn't sad when I moved.  I can count on one hand the times I actually got sad about coming to Boston.  Owen and I had the opportunity to present side by side at a pretty powerful meeting last week, and we were talking about emotional times of transitions, being alone, and depressed, and I explained how I really went through that when I was in college, but with this move, I haven't even had time to be sad.  I also feel myself settling back in this place of not being a crier (not that there is anything wrong with frequent crying).

Sure, I cried a few times when we first got here, but it was out of sheer exhaustion and just be overwhelmed with everything we had to do before I even began school.  Since then it's been like....when I saw Les Mis  (I can't. Even.)  and when I had the aforementioned corkscrew driven into my hip bone.

I also have had a shift in my Meyers Briggs type, so there is proof I tend to me more of a thinker.... But I digress.

Of all things, I was watching a Jenna Marbles video, and Maisy had told me it was not her typical work, and I started thinking about my life, and this place I've been in lately.  

My primary job, with Got Transition? Is ending in June, and for those of you who remember the last time a grant ended for me, it was sort of bleak, and a little scary.  This time, I am a lot more prepared, with a much better understanding of what that will mean for me, but it also means I have just been doing a lot of thinking of what I WANT to do, and where I want to be in this work.

Owen have talked a lot recently about our life together and what we want, and how there is a WE now that will shape the direction of what we do and where we potentially end up. I am not just me anymore, working and jet setting so I don't have to think about how alone I feel.

In addition to all of that, we have recently lost some young people that I knew (and some I didn't) through the Next Step program.

Also, in addition to Maisy being in London and feeling epically far away, things have just left me feeling sort of emotionally overwhelmed, and wanting to be eating Sam's on the deck in Maine.

But I started thinking, in this whirlwind of work, school, life, often unfairly sad, life.  What makes ME happy?  What do I like about being in Boston?  What do I miss about being home?

Are they the same things that made me happy 2 years ago?  

One thing I have learned along the way is that if you are not a (at least somewhat) fulfilled person, knowing what keeps you getting out of bed every day, you can not help others (whether that is even your goal or not) And it is ok to take time away from helping people and pretending you have all the answers to answer some questions for yourself.

I won't lie, there are totally days when I miss being home, but it usually is when I'm waiting for the B line in the freezing cold, or on a beautiful day when I just go "I really miss driving down a road in the middle of nowhere singing Taylor Swift at the top of my lungs."  And then something happens and I'm over it.   So I made a list.  Because I think lists are a nice way if sorting things out even for yourself.

Here is the list:

(I'm sorry if some Maineahs are offended by some, but these are just my honest thoughts, about MY life)

What I miss:

• My family
• Maisy (yes- she is family but she gets her own line)
• Singing
• Driving (and a combination of this and the above)
• Muffy
• The pool
• Sam’s
• Uncle Moe’s
• A few select friends that I saw enough to keep me sane
• Being a big fish in a small pond, what do you mean there’s no open table at this Starbucks, do you know who I am?
• My closet
• Being able to go out in sweats, knowing I will still look like I “got dressed.”

What I do not miss:

• Wal*Mart (why is this first?  I know... )
• Peacocks squawking and freaking out the poor dog
• Shoveling out my car (not that I did....), or moving it for the plow
• Having to talk to EVERYONE and hear their life story even if you’re just going up one floor in an elevator
• Super behind the times health care (even though I’ve been going there for 20 years!!!)
• Not having my own space, being able to do laundry etc.  (no offense mom and dad, but even you hate having the washer in the basement, this I know!)
• Lack of awesome food places in the general vicinity.  Ditto for Foodler, Uber, PeaPod and all the things that have made my life far more convenient here.
• Sitting in my room going on facebook, feeling my IQ drop day...by day... by day.  (Now I can sit in my overpriced 500 sq feet, and when this starts to happens, read something for school and feel a teensy more intelligent again!)

Then, as soon as I finished this list, I opened another window in Twitter, and this was the first thing I saw: 

“It's so clear, I'm where I'm meant to be, and at last I see the light”. –Rapunzel

For the moment, I am reminded, as one of my dear mentors always says, "I am where I am supposed to be." This summer will hold a lot of changes, but soon we will all be together, and it will be warm out, Maisy will be home, and we'll all just keep checking in to see how it's going and what WE want to happen next. 

 I think one of the cool things about being a "grown up" is being able to make those decisions, and I've already decided I don't want to be someone who just goes on autopilot in some job where I have grown cynical and burnt out, so I put my faith in the hands of the universe and those who have chosen me to carry the torch and am ready for the journey.  Onward. 

Winter, We Meet Again!

Ooooh blogging!  Remember that?   The last entry I wrote was September 6.  I had probably had like 2 classes?  Haha. Everything was perfect!

Well, ok I won’t be such a cynic, everything is going well still, and guess what?  SPRING is (maybe) really here!  We survived our first winter in Boston.

Not without struggles though, but I’ll stick with the abbreviated version… cause. Well, once again it has been 6 months.  Ouch.  Although- after April, I will have broken my 8-month curse of living anywhere away from home!

 

Let’s start with the good! 
(For some reason I feel like bullets make things more readable, even if there are massive paragraphs under them)

• ·      Owen got a job!!!  He currently is an AmeriCorps Vista with a great organization called YouthBuild.  They just had a conference in DC that he pretty much was a rock star at, he works with wonderful people, and it’s so great to see him shine in his own mission of world changing for young people with and without disabilities.
• ·      I survived my first semester at BU.  I got all A’s and B’s in my classes, except for one…which was unfortunate because I did really love the content, but it was a time of figuring out what my learning style really is- and it was not this apparently. BUT I DON’T HAVE TO TAKE EPIDEMIOLOGY AGAIN!
• ·      We have friends!  We have had some pretty awesome outings with some BU folks, but also the people in our building have formed sort of a group that has outings and celebrations when appropriate, and they take good care of us.  I can’t wait to start celebrating on the roof deck once again.
• ·      There were crazy, wonderful, family filled holidays on both this side and the West Side!  Yes. The Erquiagas and Cyrs broke bread together for Thanksgiving, and Carl and Lisa (Owen’s parents) got to see Boston and our abode now that it isn’t just piles of boxes!
• 
  
• ·      Owen and I are still very much in love.  Probably even more actually- after the following paragraphs, you’ll see why this is important.  We have lovely traditions of ordering sushi takeout, watching far too many episodes of 30 Rock and Family Guy before bed, and just being together in our cluttered 501 square feet.

So now the bad and the ugly…

After the semester ended, things sort of crashed and burned for a while.  I guess I had been going, going, going, as I tend to do, trying to be this superhuman being I strive to be.  I don’t even really remember the end of the semester that much, aside from constantly feeling like my body was in fight or flight when I would be trying to do 27 things at once in the student lounge but really never getting too much done. 

Then, after my last final, and finding out I got my required B+ in Epi, I hauled bags to South Station to take a bus to Maine to begin our holiday whirlwind.

After Christmas numero Uno, we were off to NV, and I started realizing I just didn’t feel good.   I made up all sorts of excuses.  It’s probably a virus, my body doesn’t know what it’s like to relax, I was too busy to notice, etc. etc.

I had a couple of low grade fevers, some weird stomach issues and headaches, but mostly I just felt weak, and could hear my heart beat in my ears, and it was making me crazy. This was around the time when everyone was sick and the flu was at epidemic status, so I just sort of wrote it off.

The last day I was there, I bit the bullet and decided I needed to go to a clinic in Fallon, NV.  I had a strep test, which came back positive; I worked out some IV antibiotics and prepared for the 9-hour travel day home.  The night before our flight, we were going to be staying at a hotel casino in Reno, so we could actually sleep a bit before our flight.  Let me tell you, being sick in one thing, but being sick when you are in one of your favorite travel destinations and barely being able to get back from the bathroom on your own because the room is spinning totally SUCKS.  I did manage to choke down a margarita, and throw a few dollars into a slot machine…Yolo.

Fast forward back to Boston, after 3 days of IV antibiotics, I was actually feeling worse, and beginning to believe this was more than strep throat.  I sent Owen to work and lay in bed wondering what I should do.  Should I go “home” to Maine?  Should I go to the ER?  At this point, I could barely focus my eyes and realized my hands and face were a little puffy.  The room was spinning and our apartment was actually shaking due to the construction that is still happening next door to us.

I finally bit the bullet and called Pastor Jordan, BFF Extraordinaire and said I needed to go to the hospital.  Very long story short, this resulted in 27 hours in the ER, 2 blood transfusions, and a 10-day stay at Mass General Hospital.  Not quite what I was expecting when I went in, but I guess it is true that you gotta trust your gut.  Whatever virus I had, knocked out my bone marrow and it decided to simply stop producing blood cells!  Thanks a lot marrow.  My blood counts were scary low and the dr’s couldn’t believe I didn’t pass out somewhere along the way.

To this day, the doctors don’t know what made this happen, or what the virus was. Everyone was actually pretty scared, more so than they let on at the time it was happening.

I look at the whole thing from 2 perspectives.  Overall, it totally sucked, and was not how I planned on spending the rest of my much needed vacation, but it also got my foot in the door (well, I kicked that door wide open) with hematology in Boston, and nudged along my “health care transition” in this new city (for more of my “lessons learned” listen to the latest episode of Got Transition Radio! http://www.gottransition.org/about-us-news/50 )

Owen did not leave my side, and we got through another huge milestone for us.  The first medical crisis and inpatient hospital stay.  I had always played out these various scenarios in my head, not knowing if we would be able to stay with each other, or handle all the emotions that come with these adventures we all know too well.  He slept by me in the ER while I got someone else’s blood pumped into my veins.  He held my hand while I bawled, and yelled obscenities while dr’s drilled a medical corkscrew into my hipbone for a bone marrow biopsy.  He held my portable EKG machine and straightened tubes while I tried to climb on the enormous toilet just to go pee. He stayed by me as I went 4 days without showering and told me I smelled good when I finally did.  He even posted on our Facebook page, documenting the "other side" of our disability rock star life.

We have hit those milestones.  Some people never experience such things even in marriage, and we are not yet at 2 years, and we triumphed through it all. 

I think of all the things we learned during winter in Boston, the biggest was the value of each other, and each moment.   After my hospital stay, I worked with my advisor and amazing MCH professors at BU (the admissions department sent me flowers… I continue to be obsessed with my school) and became a part time student.  I am no longer flitting around not knowing which end is up or what text I am reading. I am actually really enjoying having time to reflect on the work I am doing, and be a bit of a housewife.  It’s nice to be able to make dinner, feel like I reach the point of being “done” my homework and be able to RELAX guilt free (what is that?)  Balance is beautiful, and I want to be able to treasure this journey for what it is- a journey, not just have a whirlwind experience in which I achieve an MPH, burn out and broken relationships.  No job is worth that.

There are a lot of changes coming up for me professionally, and there will be more on that later, but for now, I am happy again.  Winter was rough, I am not a fan, but we made it, better, wiser, stronger, and I am ready for SPRING in this new city… now that we know how to use the T!

Boston Begins!

No, I couldn't be happier
Though it is, I admit
The tiniest bit
Unlike I anticipated
But I couldn't be happier
Simply couldn't be happier
Well - not "simply"
'Cause getting your dreams
It's strange, but it seems
A little - well - complicated
- Galinda

You know what's a crazy feeling?

When you look around, and wake up each day, and realize that you are living the life you have dreamed about, written about, ached for, and cried over for 10+ years.

I remember, there is a journal entry I wrote during my first week at UMF, trying to convince myself that had happened, and it was a huge step for me to be sitting in a coffee shop writing in my hipster journal, but it wasn't IT.

Now... I'm sitting here, writing, drinking coffee, with an amazing view of the CITY from our incredible studio apartment window.   And there's a pretty incredible guy here with me, which wasn't even part of the equation back then.  God, that would just be too much, you can't have it all right?

But I'm here.  We're here.  We got here.   

Of course, it isn't quite Carrie Bradshaw glamourous.  I'm not flitting about in 5" manolos, and I curse the city as my scooter jostles across the T tracks, and I get caught in the rain without the luxury of a Burberry umbrella, but it's my life, and I have minimal complaints at the moment.

I started classes yesterday, and I'm pretty sure I FELT my brain smile.   They're speaking my language!  The professors are the most real, wonderful, supportive, sarcastic, funny people I have ever encountered in "this work."  They have big dreams for us, and they're ready to train us to be part of the public health world changing team.   I sat in a library yesterday.  I talked about marketing campaigns.  I ate lunch with people that then became my friends.  I showed my BU ID to get into one of the med school buildings.  I sat in the front row of a lecture hall to discuss legal cases!!!!

I know, I know.  It will get challenging, and truly, I'm prepared for that, but knowing so many people are here to support, and want us to succeed seems to take the edge off a little bit, and for now I just am letting myself breathe in the scent of academia and ENJOY THE MOMENT.  I have been on autopilot for so long, pushing myself to make this happen, it's so amazing when I can just look around, or sit on the roof deck of our apartment and look out over the skyline and go, "This is real."

...it still doesn't feel it, but I truly believe that I was brought here because there is work to be done and it is part of my journey (and Owen's) to lead those efforts, and make big changes.  Someone's got to.  I've always been that girl to raise her hand and say the thing that everyone is thinking but is afraid to say, and that's not changing, and now I am in the midst of people (brilliant people) who want to hear it!

Aside from changing the world, Owen and I have also been warmly received socially, and have had some wonderful times with Team Boston already!  We've had dinner dates, spent a night on the cape during the Falmouth Road Race, and taken multiple trips to IKEA, and adventures around Boston just to get the feel for the neighborhood.  We are absolutely not alone here, which adds a level of comfort and reassurance to this whole experience.  We have friends, we have a support team.  We're gonna be okay  (mom and dad ;)   )

Owen also got to experience Maine, meet the rest of my family AND see camp!

We have covered many bases in a very short time! 

So here we are.  It's been a lot, but we're settling in, and school (and work) is rolling. We are so grateful for everyone who has helped us, or supported us to get here.  We do NOT take for granted that it takes a village!

There will be much more (including a video tour of our apartment)!   Stay tuned! If you are not already following our facebook page, you should:

https://www.facebook.com/OwenandMal

More pictures of our first month!

Weekend in New England!

So this is happening!

This last month or so has simply been a whirlwind of nostalgia.  Shortly after my last entry, I turned 27 (WHAT!?!?!?)   And although last year was probably the best birthday I have ever had, this one came close.  I just spent the weekend by the pool and there were surprise cameos by my 2 best friends.   It was crazy.  

I have also been going through so many boxes, and memories.  It has been quite a trip unearthing Spice Girls barbies, Furbies, Karma bracelets, and pretty much anything else that could be hoarded from the 90’s! 

Two other crazy things happened around that time- because well, this is my life.  I got a call, the weekend of my birthday, from another good friend of mine.  Some of you may know her as Galinda, or have seen her on Glee?   Perhaps.  Her name is Kristin Chenoweth.

During my trip to DC, I was listening to my “defy gravity” playlist on the airplane, and I had a random thought that I should text my friend (and famous musical director) Mary-Mitchell Campbell, and tell her that if she happens to talk to Kristin, just to pass the word along that I’m doing really well.  I often wonder what it is like for these celebrities (or camp staff members etc.)  to connect with a “sick kid,” like we did, and then not really ever hear about them again and just wonder….

So I wanted her to know I am indeed kicking asses and taking names.  Well, no sooner did I get home from my meeting in DC (which will be another entry coming soon)    K. Cheno had tweeted that she was WITH MMC and they had been talking about me!  0_o

The next day, we were driving to the Nana & Papa’s, and my phone rang and it was MMC.   No.freaking.way.  So I answered, and come to find out, her and Kristin were touring together, and were just rehearsing, and stalking my blog and facebook, and wanted to catch up.  So we did.  We chatted for almost an hour, about life, and Broadway, and as it turned out they were actually doing a concert in Boston the week I was going to be there!   Kristin said she wanted to invite me, and told me to round up whoever wanted to go, and to plan on hanging out after!    We continued to text over the weekend as they were flitting around NYC getting mani/pedis and lattes at Starbucks, and I sat by the pool with my family.

The concert was absolutely incredible, and very timely.  Even more ironically, it fell on the exact day as the benefit for Mr. Paul L. Newman that Kristin and I reconnected at in 2009.   After the show- we got to hang out a bit, and we Skyped a very excited Owen  : )   Kristin said to me, “You know, I think Paul arranged this, and I think he’s smiling right now.”

(2001)

 

I had gathered a group of amazing people from all aspects of my life for the show, and it was just such a great, cathartic, relaxing evening!  Then, as I didn’t want to spend the rest of my night trying to figure out how to get back to where I was staying in Sudbury, MA with Pastor Jordan, it was arranged so I could actually just stay with MMC.  Where they were staying after the concert.   After the cattle call of all the people with purple wristbands, MMC and I followed KC out the stage door.  I have had some stage door experiences, but mostly they consisted of very confused low budget paparazzi who weren’t sure who I was…   But this was legit.  

We exited to about a hundred, crying 12 year old girls, and while Kristin signed autographs cause she’s fantastic, MMC and I were hurried into a black SUV with tinted windows to sit among the screaming fans.  With a driver named Joe.  Yep.  My life.  We talked non-profits, health education, and where I see my life going now (HA!  Who knoooows)   Then we headed over to the Mandarin Oriental.   I won’t bore you with all the details, but check out our digs here….

Toto.  We’re not in Kansas anymore.

Except til we were.

The wonderful Sir William of Cambridge picked me up in his Toyota, and we were headed back to the “real world” where I had to figure out how to sign a lease and pay all the money we needed to, to wrap up the process with our apartment. 

OH YEA!  We found an apartment!  The week before my birthday, Owen and I snagged an accessible studio apartment in Allston.  It’s in a brand new building, which is barely even finished yet!  Our unit is fully accessible and the building is just crazy.  It is definitely more than our original budget intended, but at the end of the day we looked at all of our options, and for what we get, and will not have to worry about (there’s a front loading washer/dryer IN the unit, lowered countertops, brand new appliances, fully accessible bathroom, trash/recycling on every floor) it is worth it.  We will actually be able to focus on school, work, and our life transition and not agonize over who will get the laundry out of the basement and how we will get it back up.

(not my pictures.... real ones to come soon!!!)

It’s difficult from an advocacy standpoint, because it is AMAZING (also ironically, it is even on the “penthouse” level) and you know what.  I DO wish that we could just rent a house with 3 other people and pay $500 a month, and not worry about it.  But we wouldn’t be able to get into it- or we would have to adapt things on our own.  I have to believe that this unit fell out of the sky for us, because the universe wants us to do this.   Truth be told- I found this place because I had seen the listing many times, and just wanted to see if they had accessible units.  If they didn’t I wanted to know who I had to talk to, to see that new buildings didn’t get built without them.   When I got a response saying they did, I decided to just ask about the price.  I come from a mindset of “You never know until you ask,”  and, “Don’t tell me something is too good for me.  Ever.  If you want something bad enough, or if it’s meant to be, it can work out.”   I was sent some floor plans and price quotes, and for what we had previously been shown for things that didn’t even meet our needs, it was moderately “reasonable.”   I will be perfectly transparent.  We are paying $1750 for a studio unit.  But it’s ACCESSIBLE, and safe, and near where we need to be.  It’s the best we’ve seen.   

Check out the building here!

We scrambled and were able to get everything in to “secure it,” then we went back and forth with paperwork for quite awhile, and sometimes it felt very 1 step forward, 2 steps back, as very time we thought we were done, we’d need to sign, or pay something else.   But… as it stands right now, we got approved, and all the paperwork and fees are paid.  I get to see the building next week when I’m in Boston, all my financial aid stuff is going through, I am registered for classes, Owen has his one way ticket booked, and the going away parties are planned!

This is really happening!   It truly won’t be real until all the parents leave, and we just stand in our 500 square feet and go, “blink blink.  Um, wow.”

Now it is crunch time, and I am preparing for the Face Forward Conference in 2 weeks, then it is all eyes on the move!  My focus is a little frazzled and I am dreaming about conferences, and finding doctors, and there are days when I just want to throw all of my belongings in boxes, and just go somewhere tropical with no cell service until I can just show up at our apartment.  That obviously won’t happen, so I’m just diving into work and planning until it’s time to head to Beantown.

30 days!

I also want to share this link: http://www.gofundme.com/pbs2c 

Since Owen and I have a group of amazing supporters that spreads all over the country (and beyond, really!)  We wanted to create a way that if people wanted to do something, or give us a gift but can’t exactly attend our respective parties, you can be able to this way.   It is reputable, and secure, and of course there is NO expectation or obligation, and we totally get how tight times are right now, but if you are so willing to help out- there it is, and we appreciate every gesture of support!   Help us reach our dreams, to prove that other young people with disabilities can reach theirs one day!

We love you all.  Thank you to every single person who has helped us get this far.  This is just the beginning!

Letter to Your Younger Self

Dear Younger Mal,

So hey!   Here you are!  All those years, of emo writing, dreaming, and aching for the city, and knowing “there’s more out there,” paid off… cause it’s happening.  You made it happen.  How about that?  Proud of you kid….

Knowing that it really all will be ok eventually, and before we turn the page for real, I want to remind you of some stuff.

A lot of people will come into your life, and many will go.  Let them go.  The ones that stay, you won’t need to chase.

You will get braces.  And contacts.  And it will be one of the best decisions of your life.  You’ll look in the mirror and not really recognize yourself, but you’ll smile and say, “hey… look out world.”

People will say they love you.  Maybe not always the way you want them to, but they will make you who you are, and regardless, of how they mean it.  They mean it.

Denny’s is only good after being in a show and only having iced coffee all day.  And it’s really not about the food.  Except cheese fries.  Those are ok. Sometimes.

It’s not just you.  Your life really does have a soundtrack, and the right songs will continue to play at the right time…

Also, your life is a little crazy.  You will have incredible experiences, and it will not even feel real.  Then you will be very bored sometimes.... There's always more to come.  Enjoy the down time too.

Take care of yourself.  Contrary to what people may tell you, it’s not about who works the most, and the world will not end if you take a day off, to sleep… or maybe go to the mall.

Oh… also, about that.   Real therapy probably would’ve been better than all those semi-annual sales… and a hell of a lot easier to move.

Your friends are right... You do have THE COOLEST family.   Ever.  Enjoy every minute by that pool, and listening to the stories you've heard a hundred times.  Trust me.  You'll be glad you did.

You’ll also be glad you went home on the weekends in college to see Maisy.  She’s incredible, time goes so fast, and I promise you didn’t miss anything in Farmington.

SoCo and Lime shots will not gain you friends.  Those are not your friends.

You will have friends though.  All over the country, and some right nearby who really will be there, and won’t care if you’re dressed up, or sick in the hospital.  Keep in touch with those people.  They’re real.

It will all come together.  All those pieces of you that do make you feel happy and unstoppable, you won’t have to leave any of them behind, so don’t even worry.

I know, I know, what you really want to hear….. so guess what?  He IS out there.  And you knew…. He won’t be in Maine.  The best things happen when you’re not trying.  Keep living for you, don’t change a thing and make the most of every moment.  You’re doing this right.

It really will all be ok.

Thanks for everything,

Mal 2012