The Scooter That Love Bought

Last month I presented at a youth leadership conference.  It has been a long time since I have presented to young people, who have hope, ambition and dreams for the future.

I sort of had to sand the edges of my recent presentations since I have mostly been presenting to providers, or older students who are pretty aware of how broken our system is, in all the ways.

In this presentation, I spoke about the importance of asking for help, and identifying the supports you need to be successful.  It was also around this time, I remembered one thing I am really bad at:  asking for help.   Over the years, and through my own transitions, going to college, living in Boston, moving to Denver,  it seems I have waited until the last minute to speak up and say I can’t do it on my own.  Or it is when my body simply shuts down to say “Yea, this is too much, you need to bring in some back up."

When I returned from this conference full of energized youth, it was becoming clear that my Scooter (who we all know fondly as Barbie) was not doing well.  She could not go a block without her battery dipping frighteningly low, and she was making sounds that I just knew were not good.  I had bought a new charger, hoping that would buy me some time, but I knew she was at the end of her scooter life.

I had a technician come out and evaluate the situation.  Her prognosis was not good.  They don’t sell just a motor, and for what it would have cost me to have her repaired, would be more than a new scooter.  Barbie had taken her last scooter breath.  All in all, she served me well.  For the amount that I use her, it really was amazing that she lasted as long as she did.  The model of scooter I typically get, for portability and for my size, is really not meant for daily commuting and city adventures in all seasons.  I always tell people, “She was meant for malls and airports.”

So here I was, without a scooter.  While I like to tell myself that having a scooter makes my life easier, the reality is, I need it.  The weeks without one were a strong reminder of this.  After a few days of just walking within our one block radius, my whole body was in pain. 

It was also a reminder that there are times where you simply NEED to ask for help. 

My colleagues at work were absolutely amazing, and I did not have to Uber the two blocks to work the entire time I was scooterless.

When I found out I needed a new scooter, my heart sank.  I knew that was probably going to be the case, but it wasn’t something I was prepared for.  We are trying to save for our wedding, and I am just beginning to make a dent in some of my ever lingering medical and student debt.  This was not good news.   Not knowing how long it would take me to save for a new scooter, and needing to get back to my regular work schedule, I decided to take another leap of faith and ask for help.

When I was much younger, I witnessed the magic that can happen when a community comes together to help someone in a time of need.  While times have changed, and the form in which community fundraisers occur has changed, I figured I would put it out to the universe.

I created a Go Fund Me page, and explained the importance of getting a new scooter.  How she helps me get safely to work every day, and gives me the independence I need to be active in the amazing city we live in.  Without a scooter, I am limited in both my social, and professional life.

Let it be known, I felt a little weird doing this.  I felt like I should be able to buy a new scooter.  That if I made the choice to pay out of pocket, I should always be able to do so.  I should simply forego our plans of having a wedding, and address our immediate needs, that we unfortunately have to deal with, when others our age may not have to.  But I did it.

And there are NOT words, for what I felt when in just over 24 hours I had raised enough for a NEW SCOOTER!  Friends, family, people I didn’t even know, donated all amounts so that I could get my independence back.  People donated in honor of people they had lost, people left notes of encouragement that they wanted to see me back in action.

I fought back tears at work, as I got notified of donations of $100, $300…. People who had needs and families of their own.  I still can’t believe it.

Today I took the new scooter on her maiden voyage to spend time with my best friend!  Having the freedom to be able to come, and go, and just get a cup of coffee brought me so much joy after two weeks of feeling stuck within the small area my little legs could take me!

Thanks to the gratitude of everyone who pitched in, I was even able to get a new model that might last me a little longer and be a little safer than the model that Barbie was! 

I am so excited for new adventures, and I promise I will name her soon, but in the meantime, please accept this as a HUGE universal thank you.  As the state of our country feels bleak, and hopeless, I have been reminded there IS good in the world, and LOVE CAN WIN.

THANK YOU, THANK YOU, THANK YOU!

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 naïve, 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.

Today is Mother's Day!

"What day is today ?

Today is Mother's Day!"

- Full House

To all the moms that rock. We salute you.

But I am here to talk about MY mom.  Usually on this day, we all post an obligatory Facebook status of how our mom is the best and change our profile picture to one of us with her, but I have decided it's really time to talk about why my mom IS the best. 

Now, don't get me wrong, my mother and I have always been close.  Atypically close actually. I never went through that rebellious phase of blaming all of my life's unfortunate events on her, screaming "I HATE YOU!" And slamming the door.

I was wise enough to know my mother was not responsible for any of my minimal teen angst. But I also realized at a young age that had it not been for my mom and dad, I would not have the life I have, or maybe even be here.

As I said, I always loved my mom. I was even told by my friends "your mom is really cool."



 She basically took in a lot of my friends who sometimes needed the extra dose of "mom."  She justified any reason to celebrate or make the most of something. She taught me to not only work hard, but to play hard. 

As I have gotten older however, and am in a relationship, my love and respect for my mother (and both my parents) has deepened to a whole different level.

My mother was younger than I am now when she had me.  And she was even younger, before that, when my dad had a very catastrophic car accident, that left him in a coma and needing to rehab back to full functioning. Her strength, courage and love for him during that time, even though I'm sure it was not easy was the basis for our family to exist.

Now that I care about someone on that level, and having had minimal traumatic events, I cannot even imagine how scared she must have been. 

When I was born, another world of fear and unknowns began. My young parents were on a road of not only having to manage the future of school and "normal kid stuff," but having to learn about IV infusions and dressing changes for their new addition.

but they did. 

Then, eight years later, for our family to be complete, they held their breath, knowing they may need that same strength and courage again.

Thank god they did. 

As I have mentioned before in this blog, and having heard a lot of other peoples' experiences having a child with a disability or as a young person with a disability, there are a lot of questions I get about "How can I make friends!"  "How can my child be included?"

And my response is usually, "I have no idea, this was never an issue for me!"  While it's true I have always been a pretty outgoing person, it is because of my MOM.  That I have had friends and been in mainstream classes and been fully integrated my whole life. 

I mean, honestly, not only was I included- I was popular! (I realize only now how unique my high school experience really was)

My mother knew me, she knew my abilities and never took no for an answer.

But it wasn't just academic, she let me LIVE my life!  She let me take dance class, and have sleepovers and go to prom and go on road-trips and go away to college.

When some of those things were difficult, she let me fall, and she hugged me and listened when I got back up.  She answered the phone to silent tears my freshman year when I just didn't think I could do it anymore, and she celebrated me 4 years later when we were able to say "I knew you could!"  

Over the last few years, my relationship with my mother has continued to transform as we became colleagues. We started working on the same grant as I needed someone to travel with me, and the grant needed a family leader representative (check, and check).

I have so many memories of the trips we took together. Once I had moved out, these conferences became our time to reconnect.  We would celebrate each one with sushi or wine and toast to whatever the event would bring.  

We would laugh so hard for no reason,  or debrief into the night about the days events.

After a few years I decided I was ready to start traveling by myself, and my mom's career took a direction of its own, as did mine, and even that was amazing to watch. It was fun to actually meet up at conferences coming from different cities, and I was so proud as I watched my mother accept a national award on behalf of families all over the country (even if she doesn't think she deserves it) 

Now, as I am settled in my studio in the city, and my sister is almost finished college, I have seen another side of my mother, as my parents begin to rediscover themselves and find joy in their time together

It makes me so happy when I see pictures of them playing in the snow like kids, or that they had a date night together.  

It reminds me to value the time I have with the people I love, and to not get caught up in the small stuff.

As I continue down my career path, and as I advocate for my own health and life, I am not even going to try to pretend I do not sound exactly like my mother. Sometimes I say exact phrases I heard her utter over and over when I was younger. 

We all say "oh god I'm becoming my mother!"  And well. I totally am. And well.  I couldn't be happier.

I love you mom.

Thanks for all you have done for me, Maisy, and everyone else you continue to support to live their best lives today.

However- I also know my mother and will not give her a chance to interject and say she did not do it alone. A lot of our journey was influenced by other moms. Significant key players that supported my parents and helped me through different stages of my life.  They will not go unmentioned,  but now that I am in school for public health I can safely say that ok matter support is offered, if the social determinants of your home life don't support behavior change, positive development efforts are likely to fail.  My mom never gave up, and provided more than she will ever know.

So there. Credit where credit is due.  But my mom is still the best.

We love you :)

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