Friday, March 16, 2018

How do we do it?

I originally wrote this post on Valentine's Day, but since I've been experiencing a serious case of DBS (delayed blogging syndrome) I thought it made sense, to just post it on our 7th Meetiversary.

Good morning everyone and Happy Valentine’s Day.  Or Galentine’s Day, or Singles Awareness Day!  However you choose to celebrate, I’m here for it! Honestly, I’ve never been a fan of the V-day.  Although in elementary school, I remember agonizing over which Hello Kitty/Barbie/Little Mermaid valentine would go to who, so nobody would get the wrong message. 

Then I was single and bitter for a good chunk of my life, but never missed an opportunity to go out for pink drinks with my gal pals. And now here we are.  I’ve become that person I never thought I would be.  Planning a wedding, caring about flowers, and centerpieces, and loving every minute of it.  I remember when Owen and I first started “dating,” (Disclaimer, I hate that word, because our “dates” consisted of Skype calls and trips to Vegas… I think we had been together for over a year before we saw a movie like normal people) telling my friends and family about him, and everyone was like “Mallory… I think you really like him. I’ve never seen you like this.”  My face would turn red and I would smile, and just feel true happiness, it was WEIRD. 

This month, our story was published in the newsletter for the Kansas Youth Empowerment Academy (KYEA) and we were asked to share how we met, and our advice for a happy relationship, or for young people with disabilities who are looking for love.  We shared the abridged version here, and if you recall, a few years back, I shared a more detailed version of the story of how we met.   But having this opportunity, got us thinking, that maybe I should just write an actual blog entry.  Many of you know, we have a Facebook “Fan page.”  I believe it was on our first Meetiversary, 1 year after we met, Owen had a status about meeting me, and over 100 people liked it.  I was surprised, honestly.  Yea, I had been single for a while, but man, people were that excited to see me with someone, finally? 

People were following our story because it gave them hope.  It showed them that just because they had a disability, they could have love, that they DESERVED love.  It showed parents of kids with disabilities that their kid would find someone who loved, respected them and gave them an experience that most “typically developing” adolescents have.  So we said “Heck! Why not?”  Our Facebook “fanbase” has followed us through a move to Boston, 110” of snow, a graduation, celebrating jobs, a move to Colorado, an engagement, and now THE BIG DAY! And I’ll be honest, I didn’t know that we would hit some of those milestones, but really, not because of each other, it’s just been a real adventure. 

When we were moving to Boston, it was the biggest, scariest thing, either of us had ever done, and I remember people saying to me, “AND you’re MOVING IN together!” like that was really the scariest, hardest part of what we were doing.  Never mind the fact I was going to be going to grad school while working, or we were learning to navigate a city, and access healthcare. WE WERE GOING TO BE SHARING A BATHROOM.  Granted our first studio was 500 sq. feet, and it was quite a transition, but it was mind blowing to me how people perceived relationships, and that moving in together was so scary.  We are so grateful we lived together.  There were days (most) that it was the other person that kept us going.  I wouldn’t have finished grad school if it weren’t for Owen telling me I was needed there, and I was doing this for a reason.  He gave me pep talks, reminded me to eat, and laughed with me every step of the day.

It wasn’t easy, but we learned, we grew, and we conquered- one chapter after the next.

So how?  Why are we as successful and strong as we are?   When we were brainstorming for KYEA it was tough to articulate what we have created over the last 7 years, but I’m going to attempt to share our Top 5 tips for a happy, healthy, relationship, and what made us know we wanted to go the distance.   Ready?

1.     No B.S.  Seriously.  Before O and I made it official, I had hung out with guys before, but it never went beyond being a “thing.”  They didn’t want anything serious, and nobody wanted to commit, bla bla bla.  I straight up told Owen, “If we’re long distance, I’m not leaving this as a “thing.” I don’t have time for petty bullshit and I don’t play games.” He had me at “Me either.”  And there was none.  We didn’t (and still don’t) post passive aggressive digs on Facebook, we trust each other. I know that’s easy to say, but really. TRUST. 100%

2.     Communication. This goes hand in hand with #1, and together, they make a healthy relationship.  Ta DA!  But really.  Even when I was younger, I remember all of my friends would come to me with their relationship drama, and I hear things now, and my response is always “Well, did you tell them/talk to them, etc.”  And my mind is blown at how often the answer is, “No…” or “They should know!” I don’t know about most people, but I know that I am not a mind reader.  Owen and I talk about EVERYTHING, and we did before we moved in together.  I think part of the reason we may be so good at this is because we were long distance for a year and all we could do was talk!  We asked each other get to know you questions long into the night and covered so much before we even were together in person. Owen is well aware I’m definitely an over communicator, and not only do we talk about the “big stuff,” when we have to, but we just check in pretty frequently.  How’s it going? Are we happy? Are we on the same page? When the answer is no, what do we do about it?  I don’t know, we’ve just always been able to open up with each other in a way we never good before, and that was one of the reasons we knew we wanted to do this for real. 

3.      Support each other.  No matter what.  When we moved to Boston, Owen left everything he knew so that I could go to grad school.  I know it was hard for him, probably in ways I’ll never truly understand, but he never ONCE made me feel bad that we had moved there or that I was in school. When I doubted myself, and I wanted to quit, he would make me dinner or run me a bath and say “The world needs you, you can do this.”  We still have conversations about what we wanted to do with our lives, and how the other one would be there no matter what. I have no doubt in my mind that we never would have made it through the “Boston era” if we did not have each other.  Period. 

4.     TAKE A RISK. I will never forget when Owen flew to Vegas for my birthday because he was in love with me and he didn’t know if he would ever see me again.  Like that is some rom com stuff, you know?  At the time I didn’t really even know what to do about it, because nobody had ever made me a priority like that or been so honest.  But it CAN happen and I continue to tell people “If someone loves you, they will find a way.”  Don’t waste your time on people who can’t make you a priority, because there is someone out there who will! It was scary for me to say “Yes, let’s do this,” that night in Vegas.  Truth be told, I had never had a serious relationship before Owen.  Sure, there were guys I talked to, and it was fine, but I always knew going into it, it would never be more than a “thing,” and it wasn’t what I wanted for the rest of my life.  This was different.  Owen was everything I didn’t know I wanted. 
I’m not going to lie, we both talked a lot about the disability piece as well.  I had always said I didn’t want to be with someone who had a disability, because I had enough of my own "stuff" to deal with.  What ended up happening was we found someone whose “stuff” aligned with our own, and understood each other on a level, that nobody else would.  Don’t be afraid to take a chance, and take a step outside of your comfort zone. You deserve someone who gets you and loves you on ALL levels.

5.     At the end of the day, all you can do is laugh. 
When I first met Owen, before we even began dating officially, I remember he made me laugh.  Like really, genuinely, laugh, not like “I’m laughing because you want me to think you’re funny.”  I actually remember thinking “Huh… usually I’m the funny one… this is kind of nice.” When we would meet up in Vegas, we would walk the strip and talk and laugh.  I always tell people; Owen makes me laugh in the kind of way where you remember something he said, days later and start laughing again.  It’s true.  We have FUN, and everything is an adventure.  Seven years later, we still will get the giggles as we’re falling asleep.  I didn’t know if I would ever find someone who not only appreciated my unique (kind of dark) sense of humor, but we compliment each other perfectly and it is the laughter and looking on the bright side that has gotten us to where we are.  The world can happen around you, but if you get home, and can smile about the life you created, with the person who is by your side, it’s going to be ok.

Writing these five things makes a relationship look pretty simple.  We all know that is far from the truth, but with these five things at the foundation of a relationship, the rest will come together.  It takes time, patience, and a whole lot of vulnerability, but it’s worth it. 

My life has become something I never thought it would be. So what’s the point of all this?  Be patient, be yourself, and don’t settle.  For all those young people (or not so young people) who are thinking they’ll be alone forever with their cat (and hey, that’s ok too), live the best life you can,  and someone will notice, and want to live their best life with you.

Sunday, December 31, 2017

2017 in Review

Good morning!

I could be sleeping in right now but it’s the last day of 2017 and I don’t want to waste it!

A lot of people are saying 2017 was a garbage fire and while some of that may be true, I think most of the negativity is seeping over from a decision our country made in 2016.  Regardless of that, 2017 was good to us, and I’m not here to talk about the negativity.  I’m here to talk about the AWESOME things that happened in 2017, and you know what that means.  A COUNTDOWN!  Because… say it with me now: “I love bulleted lists!”

Here we go!

  • In February, we went to Nevada, for the annual dinner for Nevada Big Horns Unlimited.  It’s a tradition that is a big part of Owen’s family, and I got to go and be a part of it with his whole family.  Maybe after a couple more years I can even explain it to people when I tell them we’re going!

  • WE MOVED! After 5 years living together and two different studios, we FINALLY were able to snag a one bedroom, AND it’s on the first floor, which is essential for safety, when the fire alarm goes off here all the time.  We’ve never been on the first floor, and that alone has been life changing.  Nevermind the fact we now have a bedroom, a couch, closets, high ceilings.  It really is beginning to feel like home, and not a dorm room furnished with the most minimal budget furniture we can find!

  • We had the opportunity to represent the Mountain States region at their annual meeting, and I got to visit Salt Lake City for the first time!  Having been involved in the genetics community, always representing New England, it was a little weird to be telling people we are in Colorado now, but it was great to see some familiar faces, meet new people, and know we still have a set at the genetics table!

  • After several attempts, and not being able to make it work I finally had the chance to speak at the Youth Leadership Forum (YLF) in Kansas!  I had dinner with one of my good friends from my MCH life, and was reminded the speaking to youth is really one of my all time favorite things in the world to do. Being able to share my story, and help youth understand what it really takes to create a life they love, and be independent to the degree they are able just gives me that surge of energy, that buzz of…. “I think this is my passion!”  Thanks Kansas! 

  • I started “going to” therapy consistently.  Yup. We’re going to talk about Mental Health.  Ready?  I have gone to therapy off and on since I lived in Maine. As many of you know, I am a verbal processor, and having someone who just lets me blabber, who asks questions and challenges my thinking is just helpful.  When I was in Boston, I had the only therapist that ever took my insurance, and it was basically less helpful than going to coffee with a friend.  Every time I went, we literally had the same conversation… but hey, it was FREE. When I moved to Denver, I found a wonderful person who was also a life coach, AND $130 A VISIT. Plus the Uber to get there, and the time off I had to take from work.  Then I took the plunge and signed up for TalkSpace, and it has been one of the best decisions I made.  I still pay out of pocket, but I have access to my therapist 24/7 (who I LOVE) and it’s all virtual.  I don’t have to schedule appointments or figure out how to get there.  I send her messages while I’m drinking coffee in the morning, or if I have after a bad meeting at work.  She has helped me set goals, and begin to process some of the things we experienced while living in Boston (and even before then).  For so long we were both in survival mode, most of our feelings sort of got pushed aside as we just had to get through the day, the week, that degree.  Now that we are settled, its time to practice some self care and really check in with where we are at and how we can be our best selves moving forward!  Virtual therapy may not be the best model for everyone, but it is a perfect fit for me, and I’m so glad I took the plunge!

  • I got a new scooter!  As you all remember, this summer brought some literal bumps in the road as my old reliable scooter Barbie took her last scooter breath.   I was absolutely stunned as my community came together and I was able to raise enough money for a new scooter in less than two days.  I am SO grateful for all the people who love and support us on our journey and helped me to maintain my independence for the rest of 2017!

  • We went to CONCERTS!  When we were long distance, Zac Brown Band was our soundtrack, and although they came to Boston a couple times when we were there, we just couldn’t make it work to see them.  This time, we weren’t about to pass it up, and seeing them at Coors Field (while its not Fenway) was incredible!  AND THEN THERE WAS KESHA. Seeing Kesha was not only fun, it was cathartic and healing.  I know that sounds silly, but both Kesha and I have been through a lot in the last few years.  Kesha was the first CD I blasted in my car in 2010, she was my going out anthem, the song that played when I got driven to my hotel in Vegas and said goodbye to Owen along with “You have my number, use it or don’t!”  The crowd at this show was one full of love and acceptance.  Yea, she got political and we needed it.  She only sang for an hour but it was the best night we had in a long time.  I sang, I cried, I let my hair down, and there was glitter, so much glitter. 

  • In September, my family came to visit, and I realized that it was the first time since I’ve lived in another state that both my mom and dad, and my sister have come to visit at the same time, and it was AWESOME.  They were able to sty with us since we have a bigger apartment now, and we did so much!  We brunched, we went to Taste of Colorado, I got to take my dad to the Grateful Dead bar by our house (which I’m pretty sure is now one of my favorite memories of all time), and we went wedding dress shopping!  I know we all went, feeling vaguely pessimistic, since dress shopping for me tends to be challenging, but the angels at Luv Bridal were incredible, and made it the best experience.  I didn’t expect to find a dress on my first trip, but I did, and I was actually sad when it was over!  We also went to the butterfly pavilion, which was so special, since butterflies are a symbol of the Nana, and it was like she was right there with us. Then we surprised my family by taking them to dinner at our future wedding venue.  It was so exciting to be able to share Denver with them, and celebrate how far we have come!  

  • THE WEDDING STUFF!  Last year at this time, we had just gotten engaged, and I was absolutely overwhelmed at what had to go into having a wedding.  I thought we could never do it, and people kept asking if we had a date or a venue and I already felt like we were behind.  Then we took some time, thought about what we wanted, enjoyed looking at venues and now a year later, it’s really happening.  I have a dress, we have our venue, DJ, photographer, and it’s really going to be what we want it to be!  We are SO excited to have all the people we love in one room, it’s going to be so incredible.  280 days and counting! 

  • Last but certainly not least, in the last couple weeks of 2017, Owen GOT A JOB!! Since moving to Denver he was worked endlessly, applying and networking to land a consistent opportunity that was a good fit, and something he could get to easily.  Well, his hard work paid off, and he is now a marketing research recruiter, and works just a few blocks from our apartment (and my office).  In addition to this huge accomplishment, in 2017 he worked at the elections division again and really found his niche in dog sitting which has been SO FUN!  He has such a knack with the canine crowd, and it has been great, spending time with different kinds of doggos,  so we can practice before adding our own furry friend to our home (I mean.. .we all know we’re going to eventually).  If you need a dog sitter in the Denver area, find Owen on Rover!  

So there you have it!  I thought it would be tough to make a list of 10 things, but really it was hard ONLY picking 10!  Cheers to all of you who supported us, and helped to make 2017 so incredible, I can’t wait to see what 2018 has in store.  May the new year bring you all health, and happiness!  Be safe, have fun, and make the most of this last night of 2017.  

Sunday, August 06, 2017

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.


Friday, June 23, 2017

#SaveMedicaid Part I

Ok.  It’s time to get real.  I usually try to gloss over some of the healthcare, and advocacy stuff, but with things as scary as they are, that may be pretty much impossible.  I made a vow when I relaunched this blog, that it would encompass ALL parts of myself, and that’s a pretty big part, regardless of how well I may hide it.

Unless you live under a rock, you know that health care is in SERIOUS danger.  The proposed “health care” bill was unveiled yesterday with the new “administration,” and let me just say, I use the term care loosely.  Take a gander at the summary and make sure you have your barf bucket nearby, as it is basically a mass murder bill.

While it’s a dumpster fire all around, I want to discuss Medicaid.  Rachel Maddow spells it out perfectly, as really Medicaid is the country’s LARGEST insurance plan and covers 74.5 MILLION people- mostly women, children and people with disabilities. SEVENTY FIVE MILLION OF THE PEOPLE WHO GOT OFF THE TITANIC FIRST.  SEVENTY FIVE MILLION.  LET THAT SINK IN.

Medicaid is NOT welfare; it is one of the best insurance plans in the country that covers things that private insurance does not cover. Things that are essential for people with any “beyond average” health needs require to be alive… or be in their community instead of a hospital.  These can include wheelchairs, life sustaining IV nutrition, assistive devices or PEOPLE to help with eating, going to the bathroom, communicating, GETTING AROUND.  You know…. Those things most people do every day without batting an eye. 

So here’s where I get real.  This is the first time in my life I have NOT had Medicaid.  I have also had private insurance.  I have a rare genetic disorder, and I rely on IV nutrition to LIVE.  I get 7 bags of IV fluid delivered to my apartment every week.  My love, Owen Reese puts this in the fridge and helps me prepare it every night.  I keep a stock of medical supplies to administer said IV (these all cost money and are not available at Walgreen's).  The cost of my daily existence is roughly between $7,000-$10,000 every two weeks, and this is when I am at my very BEST health.

I could very easily end up in the hospital for an infection because of my disease.  I get frequent Iron infusions.  I get regular bloodwork that costs $1,500.  For now, my private insurance covers most of that (MOST).  Here’s the plot twist.  I work for our state Medicaid program right now.  I can’t get into that, BUT for the sake of irony, it’s important.  IF I lost my job due to Medicaid cuts, since this new bill wants to make blood thirsty $800 BILLION cuts to Medicaid, I would NEED MEDICAID.  If one of us ever had a medical crisis, we may need in home supports to STAY IN OUR HOME.   Here’s the thing I often don’t talk about.  On paper, I am "nursing home level of care," or “hospital back up.”  I would qualify for the program I work on. What that means, is, if all of a sudden, I didn’t have the support, or the ability to care for my own medical condition as well as I do I would need to be institutionalized. Yes, I said it.

When my sister and I were little, our parents wanted to take a vacation and because our needs were too high for “respite,” (which probably was not even a covered benefit under their plan, they suggested my parents “PUT US IN A NURSING HOME FOR THE WEEKEND.”

FOR. THE. WEEKEND.  Two, young, vibrant, independent girls who happen to have a few extra steps due to their medical diagnosis.  This story still grosses me out to this day, that was even suggested as a solution.  Needless to say, my parents did not go that route, and we were fortunate to have the natural supports that we found someone to stay with us so my parents could have some grown up time. 

But I digress.

The point of this is to say, the cuts to Medicaid would be life threatening to thousands of people.  This is not “lazy people living off the government.”  Once you are over the age of 18 this is NOT AN ENTITLEMENT PROGRAM.  You have to apply for it, you have to fight for it, and you have to justify your needs over, and over again.   It is not “free money,” it is not “disability.”  It is necessary healthcare coverage so people with disabilities, and other complex medical needs can maybe be CLOSER to achieving some sort of quality of life when our society is still riddled with obscene barriers every step of the way.

When I was little, growing up, with more medical needs than my family ever thought we could handle? I WAS ON MEDICAID.  When I was in college, trying to further my education so I could have a job, and a fulfilling life as an adult? I WAS ON MEDICAID.

When I was in grad school, working in public health and operating a small business?  GUESS WHAT? I WAS ON MEDICAID.  And guess what?  I pay taxes.  I pay a lot of taxes.  If my health care coverage is taken away so that I can no longer work?  Guess what…. Then I am “living off the government.”  And the government CHOSE THAT.

This is definitely just the beginning of how I feel about this entire debacle, but I needed to begin by setting the stage.  $800 billon cuts in Medicaid is just one terrifying piece of why the proposed bill is unacceptable.

And my story is just one of 75,000,000 that will tell you why.