Word of the Year

The following post is one of the first posts on my new site: Graceful Rising (it will be up soon!).  

The year 2016 will be my third year doing a "word of the year" instead of a typical resolution.  I did not come up with this awesome idea, I was first introduced to the concept by Christine Kane (she's a badass and worth following on your journey).  The cool thing about having a word is that it's more of a guide than a general resolution.

In 2014 my word was "confidence" and in 2015 it was "stability."  These words just came to me as I was doing the exercise, which I will provide a link to at the bottom of this post.  Just to give you an idea, some of the specifics of working toward stability included physical stability, mental stability, and financial stability.  I journaled frequently (2-3 times per week) about ways I was meeting this goal.  Things like meditating, exercising, tracking spending, and saving money were all ways I was embodying my word of the year.

If you were thinking about doing a New Year's Resolution, or two, consider instead doing a Word of the Year.  I guarantee you won't regret it.  Just let the word come to you (you might be amazed at how easily this happens- a perfect example of tapping into your awareness) and then work toward, and with, your word for all of 2016.

Let's make 2016 our best year yet.

Christine has a 'Word of the Year Tool' that you can download to figure out your word for 2016.  Download the tool here.

#WCW Ellen and Happy Thanksgiving!

It's hump day!  And that means #WCW.  My crush today is Ms. Ellen Degeneres.  I am a big fan of her show and she always seems to put those around her in a good mood.

Three things I have learned from Ellen:

1) Don't worry too much about what other people think of you.  Ellen obviously dances to her own beat- and literally dances.  She does what makes her happy.  This is a lesson that takes some of us years to learn.

2) Care about others and have compassion.  Ellen often has guests on her show that do amazing things for others. She celebrates them and, in turn, reminds us to give it our all in our work and personal lives. 

3) Be kind to one another.  As you probably know, this is Ellen's sign-off phrase.  I have always loved it.  In a world that seems less interconnected these days, it's important to be kind to those around us.  I try to remember to give a simple smile or hello to anyone I see.  You never know how much that may mean to someone.


Have a very Happy Thanksgiving!

What I Have Learned From a Two Year Old

 

Well hello there.  I am feeling quite happy today because my dad sent me a bunch of photos of my adorable nephew.  He is two and a half and it amazes me how much I can love a child that isn't mine.  Sometimes I think about him randomly throughout my days.  I  realized the other day how much he is teaching me about my life.  The way he moves through life is a good reminder of how I should behave in my own (not always literally).  

 

He reminds me to do the following:

1) Give myself credit for small wins.  It's a big deal when he goes "poopy in the potty."  We cheer, we clap, and we even have a song about it.  He gets a big smile on his face because he knows he did something great.  This reminds me to congratulate myself for things that might seem small to others.  There's no harm in being kind to yourself.

2) See everything as a learning opportunity.  He's at that age where he questions everything.  And when you say something- he repeats it.  His mind is like a sponge.  This reminds me to be aware of what's going on around me and never stop learning.  There's always more to learn.

3) Make time for fun.  He can occupy himself for hours.  Sure he moves from the sandbox outside to the train-set inside and back again, but there is never a lack of things to play with.  This reminds me to always give myself fun time.  It helps to reduce stress and can improve mood.  Yes, I have adult responsibilities, but I should always make time for play.

Malala #WCW

It's that time of the week again. My #WCW tribute this week is for a young woman by the name of Malala Yousafzai.  You may or may not know of her, but she is a truly inspiring young lady.

Three things I learned from Malala:

1) When you find your passion follow it- that is your purpose. By the age of fifteen, Malala knew her passion.  Since then she has been fighting for the right to education for girls around the world.  She went on to win the Nobel Peace Prize in 2014.

2) Bravery and courage are important when following your passion.  Malala was brave enough to blog anonymously for the BBC about life under Taliban rule, in Pakistan, at the age of eleven.  She expressed her concern that her school would be attacked.  She eventually began appearing on radio and TV shows and her identity was no longer anonymous. 

3) Your willpower and strength are insurmountable.  Malala was shot in the face by Taliban upset that she continued to speak out about the importance of education for girls.  She fully recovered and continued to speak out for girls around the world.  She now has The Malala Fund which works to secure access to twelve years of free, quality education for girls.

Malala did most of these things by the time she was fifteen years old.  When I see her on a talk show my heart just swells.  Malala reminds me that people can be amazing and do amazing things.  If we could only have the courage to follow and, if necessary, fight for our passions.

Good Credit Is Important in Life

Hello again.  I have been thinking a lot about debt lately.  I, like many of us, have some debt.  I have student loan debt, and I just bought a house.  Sometimes I feel like I will NEVER pay off my student loans.  However, I still have a pretty good credit score.  There are a few rules I followed to build a good credit score.

When I was 18, my parents allowed me to get a credit card- one card.  It was to be used only for emergencies, and I always paid off the balance right away.  A few years later I opened a credit card for more regular use.  The following tips allowed me to build enough credit to buy a house on my own when I was 30. 

1) Only use a credit card for things you would already buy.  For instance, I use my card for groceries, gas, co-pays at doctor's offices, etc.  But these are all things I could also buy with a debit card.  In other words, I have the money to pay for these things.  I just use a credit card in order to earn SouthWest points for flights.

2) Pay off your balance in full every month.  I never even look at the interest rates on my credit cards (I have two), because I pay off the balance every month.

3) Don't have more than one or two cards.  I open up a new credit card account from time to time to buy things like a computer or, most recently, a washer and dryer.  I do this because often there are deals like "no interest for 6 months," and I know I can pay the bill off in that time.  Now, I've heard mixed things about closing a credit card.  It supposedly affects your credit score, but I choose to do it anyway so that I don't have a bunch of cards open that I am not using (mostly I worry about identity theft).  Talk to a financial advisor or do more research before closing a card.

4) Pay on all your other debt every month.  Don't let loans go into default.  Student loans are easier to negotiate the payment amount.  You can even work out plans for many that are income-based.  Make an arrangement to pay an amount you can afford each month for all of your loans.

If you are looking for more information, there are plenty of online resources, advisors, and books on this topic.  We all know how important credit is when buying those large items.  If you are just starting out with credit cards these are good tips to follow.  If you already have credit card debt, there may be other important tips and hints to get out of debt.  

#WCW J.K. Rowling

It's Wednesday- we're half way through another week!  I would like to honor Woman Crush Wednesday by sharing three things I have learned from Ms. J.K. Rowling. 

I don't think it is any secret that I am a Harry Potter SUPER fan.  I started reading the books in junior high; they weren't all published yet and I painfully waited a year for the next book in the series to come out.  I love the books and all the wonderful quotes and lessons throughout them.  The author of this popular series is just as awesome as the books.

Three things I learned from J.K Rowling:

1) You can always turn your life around.  J.K. was unemployed and living on state benefits when she published the first HP book.  She went from having very little to being a multi-millionaire in five years.  If that's not inspiring I don't know what is.

2) You should never give up on your dreams.  The first HP book was rejected by 12 publishers before Bloomsbury picked it up.  I bet those publishers were really kicking themselves when the books took off.

3) You should never be ashamed of your "issues," in fact, you can use them to your benefit.  J.K. has been open about her battle with depression.  The Dementors in the HP books were created from her experiences; they suck the happiness and hope out of their victims. With mental illness still having some stigma, it's nice to hear someone talk openly about it.  We can all embrace our struggles and use them to enhance our work.

Since we keep meeting like this...

Well hello, I hope you're having a good week.  Tonight I am going to tell you a few things about myself you probably don't know.  If we're going to keep meeting like this, it only makes sense for you to know me better...

1) I am currently working as a Housing and Program Manager/Case Manager at a nonprofit organization.

2) I love to learn new things about health and wellness and hope to pass this information on to others.

3) I just started a Master's program for social work and clinical counseling.

4) I volunteer for two nonprofits in Albuquerque, one helps persons experiencing homelessness access healthcare and the other is an international education program.

5) My favorite season is Fall.  Fall in New Mexico is no where near Fall in New England, but I love it just the same.

New Book Preview!

I have been having a really hard time writing lately so I may be shifting my focus of this blog a little.  One thing I would like to share is some of the new book I've been working on.

Below are a couple paragraphs:

I look for Lily at lunch and am planning on asking how her day is going.  Lily lost her older sister several years ago.  Kelly decided she wanted to travel before becoming a Writer.  That was almost unheard of, no one left.  Why would they?  The rest of the world hadn’t caught up to our discovery and all was not as well outside the U.S.  Two months later, Lily’s family had gotten word that Kelly was dead.  She was hit by a car in Mexico.  Since the loss of her sister, Lily seemed a little off, but she still told people she wanted to become a Writer.  I stopped believing this many months ago. 

                

 I remember the first time I saw Lily after we had heard the news of her sister.  Her eyes were red and puffy, she wouldn’t eat, and she would barley talk to me.  We talked about everything, but I didn’t know what to say to her.  I had never experienced such a loss, and she was close with her sister. 

              

“I don’t know what I’m going to do without her, she was my best friend,” Lily had said before another bout of sobbing.  I was a little hurt by this comment, I even felt jealous of Kelly, but I couldn’t feel that way toward someone who was no longer alive.  Besides, I never had a sister so I didn’t truly understand.  I knew Lily and Kelly had been close, and their family was torn apart by the loss of their oldest daughter.

                

I never understood why Lily kept up the charade of wanting to become a Writer.  Maybe it was for her parent’s sake.  They were both extremely supportive of the System.  They felt they had not put enough effort into their Writings and meditation, and this was why they had lost Kelly.  As far as I know, they still partially blame themselves.

                

I didn’t see Lily at lunch, maybe she was meeting with someone about her schedule.  I made it through the rest of the day and then decided to walk home.  The world is so beautiful and I hate being stuck inside all day.  

Feel free to contact me with any questions or comments.  And I swear, I will try to do better with blog entries.

True.

Need to Update Your Wardrobe?

The Muscular Dystrophy Association has partnered with Sevenly to raise money to send kids to MDA Summer Camp.  The shirts are super cute!  

Check them out here.

Looks like they're only about $3K away from their $27,000 goal!

My Accessibility Ride Guide: Universal Studios (and more importantly the Wizarding World of HP)

As you know, I recently got back from The Wizarding World of HP.   We’ve been to Universal (and Disney) before, when we were kids, but I didn’t remember much.  I did remember “Poseidon’s Fury” and the “Men In Black” ride.  What I definitely didn’t remember were all the stairs to rides (and subsequently elevators), because I didn’t have as much of a problem with stairs then.  During this trip, I only went on a handful of rides, and we went to some shows.  Here’s my breakdown of the rides I did go on, in case you were thinking about going to Universal:

Hogwart’s Express (to go between Diagon Alley and Hogsmeade): There are stairs to and from the platforms on both the Hogsmeade and Diagon Alley side, but there are elevators.  I didn’t bring the scooter, I’m not sure if they would have let me, but probably since you would need it once you got off at the other park.  There was a girl in a regular wheelchair who shared a compartment with us. She had to leave the chair at the entrance on the train and walk a couple steps to the compartment. 

The Forbidden Journey (HP ride in Hogsmeade): There are elevators to the ride, however there is a moving platform to get on and off the ride.  I did not love that.  You can ask them to stop the ride to get on and off if needed.  The ride is set up like a roller coaster with the bar coming over your head, and your feet hanging with nothing under them.  I wasn’t a huge fan of the ride- mostly because it made me queasy, but it’s worth it to go through Hogwart’s and see everything inside the castle.

Escape from Gringotts (HP ride in Diagon Alley): This was my favorite ride in the whole park. I endured the 75 minute line twice!  There is also an elevator to get to the ride.  It’s set up like a wooden roller coaster with individual lap bars and your feet are on the bottom of the car.  It’s not too low so it wasn’t super hard to get out of.

We also stood in line for the Transformer’s Ride for an hour before it broke down. I was too tired at the end of the day to use our express passes to get on, so I’m not sure how the car was.  My parents said the ride was fun, but then, they don’t have the same concerns as I do for rides.

There are also stairs to get to the MIB ride and the elevator was broken when we were there so I didn’t go on it.  I told my parents to go without me.  The back row of the cars looked a little higher up (so you can see over the heads of those in front of you), so the row is probably also easier to get out of.

We saw the Shrek 3D Show and I rode my scooter all the way in, but transferred to a seat so that I could get the full experience.  I also rode my scooter through Poseidon’s Fury.  There’s no need to switch to a chair so it was a good, relaxing thing to do.  We went to the Despicable Me show.  There are stairs once you get into the show part (it’s like a simulator), unless you are in the first three rows which are ground level.  There are also sedentary seats at the front, which I actually liked better because the show made me a little motion sick.  We were allowed to wait at the entrance of the ride with the scooter until my mom made it through the 75 minute line.  You can either be transferred to a regular wheelchair or walk the rest of the way through (which is about 100 feet, but 10-15 minutes of standing). 

The last ride we went on was Spider Man.  The ride was level to the ground and the cars weren’t too low. That one is still fun- even though I kind of remember it from when I was younger.  

We didn’t have express passes for the park, but I can see how that would be helpful even for 1 day; especially if you get tired from standing in lines.  Most rides were a 60-90 minute wait, but some of the shows had a shorter wait time.  You also can’t use the express passes for any of the HP rides… just a forewarning :).  My last tip: bring a sweater; its freezing once the ride line moves indoors. 

All in all, I was impressed with the accessibility for the rides.  I suppose they have to make them accessible, but I never used to notice things like that.  There is a ride guide for Universal that you can look at for accessibility info, but hopefully this added to the information the guide provides. 

Feel free to contact me if you have any questions.

#CureFSHD Campaign

The FSH Society just finished an amazing campaign: #CureFSHD.  I was super excited to learn about this campaign because I felt like the purpose was to make people more aware of FSHD.  This was exactly my goal in writing The Graceful Art of Falling so I have been a big fan from the very beginning.  I will share some images from the campaign below.  Feel free to check out their website or facebook page for more information.

Scooter Time

I spent last week in Florida... at Universal Studios.  It’s been about 10 years since I’ve been to Florida.  I was super excited because we went to The Wizarding World of Harry Potter!  My mom and I were talking on the phone before we left and she asked if I would like her to rent an electric scooter to help me get around the park.  Actually, she said, “you’re probably going to be mad at me for asking, but…” I was a little mad at first, but then I realized it would probably be a good idea.

It was a good idea.  I haven’t been to a theme park in sooo long, and I certainly do not have the stamina I had ten years ago.  My dad had to put the scooter together and take it apart each day so that it would fit in the trunk of the rental car.  We were wondering how anyone who needed a scooter would actually be able to lift it and put it together- they probably couldn’t.  Luckily, I had my dad and we made it into a game; each day my dad tried to beat his time of taking it apart from the day before.

I mostly used the scooter to get into the park and from section to section.  I didn’t use it for many lines because I would have had to switch to a regular chair with someone pushing me. Given the fact that it would have been hard for me to get out of the chair, I just decided to endure the long lines.  I also walked around both Hogsmeade and Diagon Alley.  I couldn’t not- it was so crowded.  I was still tired by the end of each day, even though I probably walked 1/8 (maybe less) of what my parents did. 

Driving the scooter took some getting used to, and the crowds still caused me some anxiety.  I had to work my way through the people, slowing down and speeding up with the pace of the traffic while trying not to hit anyone in the process.  There were some close calls.  People just do not pay attention when they’re walking… especially when there are so many cool things to look at.  I guess I would rather have them looking around than at me.

As they glanced at me, I couldn’t help but wonder if they were thinking, “I wonder what’s wrong with her,” or “she doesn’t look like she needs that.”  Or maybe they were just jealous that I didn’t have to walk everywhere and were secretly wishing they had a scooter too.  When we were leaving Hogsmeade one day we passed a woman in a scooter coming the opposite direction.  I stopped to let her pass as others were just walking around and in front of her.  “It’s like I have an invisibility cloak,” she said smiling.  I appreciated the HP joke, but I felt kind of sad about the comment.  I don’t spend all, or even a majority, of my time in a chair, but I liked it better when people didn’t seem to notice me.  Maybe it’s because I didn’t quite feel comfortable with it.  I’m not sure why people don’t look at people in chairs (or scooters).  Do they feel bad for looking?  Are they not sure how to interact with people who have a disability? 

I know I sometimes feel awkward looking at people in chairs.  I often try to smile at them or say "hi"- but since I’m usually not in a chair I don’t know how that is received.   I’ve noticed that it’s people who know someone, or who have a disability themselves, that seem the most comfortable with it all.  It’s like we’re in an elite club that no one else really understands.  I will say this, I feel like I understand better what people who are in chairs go through.  Part of me already understood as I use curbs and avoid stairs when I can, but it’s not exactly the same.  I definitely understand how a chair or a scooter is helpful- it was extremely helpful on this trip. 

One day it probably won’t seem so terrible to me- because I will need it to get around.  Until then, though, I feel good about only using one when I absolutely need to… and I am so glad I did.  It was amazing to see the things I saw and hang out with my parents- I wouldn’t have been able to do that if not for the scooter.

Possibilities

I think the Universe just loves to mess with me.  I had a doctor's appointment recently where we were talking about some things that might help to improve my strength.  We also talked about getting rid of the beliefs that are currently holding me and my body back from my "divine life."  Have I mentioned I love alternative medicine?

After this appointment I felt sort of... sad.  I was super hopeful and excited about the possibilities, but I was also sad because some part of me, this disease that I've had for almost 20 years, would be missing.  It would leave a huge gap, an empty space like you experience during a breakup.  
 

Wait, what?  Isn't this what I've always wanted- to not have a physical disability?

But I got nervous.  This has been my life for so long.  What would happen to the validity of my book?  Would people believe that I wrote it or that the experiences were really mine?  Would I still be able to have a career as a counselor for people with disabilities?  How could they relate to me if I was perfectly healthy?  

And then it started.  I kept falling.  Hard.  I had really terrible bruises, and I almost never fall in a way that leaves a lasting mark.  I could barely do yoga one week because my knees were so sore.  I could just hear the Universe in my head, "This? You're going to miss this? Get over it- you will adapt, just like you have been doing for the last 18 years to the life you currently live."   

I think the Universe is right.  I am capable of living my current life.  I can cope, find ways to do many of the things I want, and I can be happy.  But truly, I would rather not be limited by my physical abilities. 

I would rather be able to do everything.  I would love to actually believe that anything is possible.

Happy March!

It's March.  Support the MDA- buy a shamrock!

What If...

Do you ever think about what you would do if things were a little bit different?  If you had more money, if you had more time off, if you were in better health, if... whatever the "if" is for you.

I was thinking about this recently, and if I had my complete physical abilities I would do so many things.

I would want to learn to ski, to try scuba diving, to learn to surf, and to travel more (possibly by myself just because I could). I would want to learn to play tennis and maybe even golf. I  could live in a two story house, move back to New England to be near my family, and maybe I would even change career paths.  I've always wanted to do something that helps others and am fascinated by alternative medicine.  

I would obviously need money and time off to do many of these things, but I believe that I could find a way to make that happen.  If I had my complete physical strength my life would be different.  Not completely different, but different none the less. 

What is your "if"? 

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I'm planning on doing another giveaway on Goodreads in May.

Legs

Legs. I always check out people's legs.  That might seem weird... but hear me out.  We notice things on other people that we like and wish we had for ourselves. 

While I was flying home for Christmas, I couldn't help but notice people's legs.  Walking off of the jet-way, walking through the airport- how nice it must be to walk confidently, quickly, on strong, sturdy legs. How nice it must be to walk without fear that your legs will give out, that you might slip on the floor, or someone will run into you and knock you slightly off balance, just enough that you fall over.

I bet people don't even think twice about their awesome legs that get them from place to place efficiently and without difficulty. I do wish I had better legs.  Don't get me wrong, I am so grateful that my legs can still do what they can do, but of course I wish they could do more. It seems like all legs should be created equal, they should be able to do the same things... what should be simple things. 

Oh, legs.