Wednesday, January 23, 2019

When Routines Break Down

I never forget that I'm in a wheelchair and have a disability, but I do tend to forget the affect it has on my daily life. There are so many workarounds that I've created that I just take for granted. But I notice my disability the most when one of those workarounds fails. Because, as many people with disabilities know, it's not the disability that affects me the most - it's the ways that society is inaccessible to me and my disability.
Living in Pittsburgh means that almost every house is a multilevel house, built on a hill, often with steps to get in. Until I was in high school, that meant that my sister and I had to be carried up and down flights of stairs to get to other floors in our house - our wheelchairs could only get in on the main floor. And you can't easily carry 250 pound wheelchairs up stairs, so we were basically stuck once we were carried up- or downstairs.That was fine when were young and small, but by high school we really wanted the ability to have our own space, and to be in it without having to be stuck laying in our beds. So my parents did a major renovation on our house, and we put an elevator in so that we could actually get around independently.

When I woke up Thursday morning and tried to ride the elevator downstairs to shower, it just didn't work, at all. I don't want to get into the details, but long story short, it meant that I was stuck in the top floor of my house and couldn't go to work.

I ride the elevator in my house multiple times a day, usually without giving it a second thought - we've had it for so many years now that I just take it for granted. People with disabilities do this for so many different parts of our lives - we create workarounds or modifications to get through our days. And we rely heavily on them! So much of the life of someone with a disability is complicated logistical planning, with backup plan after backup plan in place, and sometimes even that's not enough - it's not possible to foresee every single potential breakdown. When something goes wrong, and one part of our routine breaks down, no matter what it is or why it happens, it sends ripples throughout the rest of our lives.


Tuesday, January 22, 2019

10 Year Challenge

Have you seen the 10 year challenge going around social media? I'm not exactly sure how or why it started, but the concept is to put two pictures of yourself roughly 10 years apart next to each other, to see how you've changed.

It's a fun thing to do - I think I look different, but people still think I'm in high school or college all the time, so maybe I don't actually look THAT different. But I think that most of the changes that I've gone through haven't necessarily been strictly physical ones. I thought it would be fun to do a 10 year challenge, but about my life in general, not just my looks. Since we're just getting started in 2019, I'm going to use 2008 and 2018.
2008
In 2008, I was in college at Carnegie Mellon - either finishing up my sophomore year or starting my junior, depending on which part of the year we're talking about. I was very much still figuring things out. I was majoring in engineering, but realizing that maybe I didn't actually want to pursue it after graduation. I had a really rough freshman year, academically, and was still learning how to study effectively and this point in college. I was starting to get more involved in groups at CMU - I joined a sorority my sophomore year, and got more involved with the campus newspaper, which I ended up loving. I had also just finished one of my internships with the Quality of Life Technology center, where I was introduced to research as a field, but I definitely didn't know that was the field I'd end up working in.

I'm not absolutely certain, but I think that this is also when I started to solidify my friends at college. I had such a close group of friends before going away to college - we'd basically been friends since elementary school. I made some friends freshman year, but the ones I'm still closest with now I met a little bit later into college.

I also can't write this without talking about living alone on campus. Until college, I'd never had anyone but my parents doing my caregiving. I really really wanted to live on campus - and I'm so incredibly glad that I did - but the adjustment was huge. By sophomore year, I was finally starting to feel a little more settled about living away.

2018
I've touched on this last year in a few posts now, so I won't go into too much detail here, but I do think it's interesting to look at some parallels, and also see where things are wildly different.

I'm a part-time graduate student, so technically that hasn't changed, but it certainly feels very different. I'm so glad that I took some time "off" between undergrad and graduate school, because being a student feels so different now. I'm able to actually take interest in my classes and dedicate the time that I need to, because I'm not completely burnt out on exams and problem sets. Now, with that being said, I have been a part-time graduate student for about five years now, and I'm really looking forward to the end of my MPH program.

What feels the same, too, is the feeling of starting to be settled, of knowing where I'm going and what I'm doing. This whole past year felt like a long, slow coming together of sorts. Pieces and experiences have started to click into place, and helped me to figure out what I want to do and how I want to move forward.

There were certainly both ups and downs in the interim years, but on the whole, I think my life in general is definitely on an upswing. Hopefully the next 10 years continue on this path, too.



Monday, January 21, 2019

Winter Essentials: Staying Warm

The cold weather has really hit here in Pittsburgh. The wind chill was hovering around -5 degrees yesterday! I am not a winter person at all - I hate the cold, and it also makes life a lot more difficult for me. I can't put a jacket on by myself, so I don't get to take a break outside at all during the day, and having to wear layers just means it's harder for me to move my arms easily.

I have learned, though, what to wear to keep me warm without adding a lot of bulk and layers. While I might be more particular and specific about my needs, these tips really apply to anyone!
Cashmere Sweaters
I know cashmere can be expensive, but it is absolutely worth it. Not only is it incredibly soft and comfortable, but it is the best at being warm without being bulky. They're never stiff or hard to move in, which is really important to me. My favorites are from Everlane and Uniqlo - if you can scoop one up from Everlane during a "Choose What You Pay" sale, you can get one for $70, which is really great for the quality of the sweater - there are still a few sizes/color combinations available at that price here. And the sweaters from Uniqlo are really reasonably priced, too, and on sale here!

Fuzzy Socks
If I'm wearing boots, I almost always have a pair of fuzzy socks on underneath. I usually buy the "spa socks," but I wear them during the day rather than overnight. I don't have great circulation, and my feet are almost always cold, but these socks help keep me nice and toasty.

Fingerless Mittens
My aunt bought me a pair of super cute, embellished fingerless mittens for Christmas - I'd never had a pair before, but I realized they're perfect for me! Driving a wheelchair in the winter is hard. It's a struggle because if your fingers are too cold and stiff, it's hard to drive it, but if you wear gloves and it's too hard to move your fingers, it's also hard to drive. These fingerless mittens seem like the perfect middle ground - they add some extra warmth, but they don't make it harder to move. And the crystals are so cute!

Plush fleece lined thigh highs/tights
In the interest of full disclosure, I should be honest - I never wear full tights. Sitting all day with the tights waistband digging into your stomach is SO uncomfortable. I don't remember exactly when I realized that I could get away with wearing thigh highs/knee highs as regular tights and no one would ever know the difference (#WheelchairPerks) was one of the most exciting. The Plush brand are especially great because they're fleece-lined and so warm - they sell thigh highs here, and for those who may not be able to get away with those like me, they sell tights here

I pulled together some of my favorite picks below - you can scroll through and check them out. Let me know what you wear to stay warm in the winter!

This post contains affiliate links; I may earn a small commission from any purchases you make.

Friday, January 18, 2019

Friday Favorites

I had some crazy deadlines for work earlier in the week, so I'm looking forward to the weekend even more than usual. I'm also off work on Monday, and I'm excited to use that time to relax... and maybe try to get just a little bit ahead on my to-do list. For as much motivation as I've had this January, I feel a little bit like I'm perpetually behind on everything I'm trying to get done.

And of course... after I wrote the paragraph above, I woke up to a broken elevator in my house on Thursday morning. This threw a serious wrench in the rest of the week/weekend - I'm currently stuck on the upper floor of my house, unable to get out. Time off sounds nice, but it's not so much fun when it's forced and you have to worry about when the repairs will be completed.

Having the elevator - and the ability to get around in my house - is something that I take for granted day-to-day, and something that I really rely on. I'll do another (longer) post on the elevator another day, because while it's something I take for granted, I know most people don't expect to find an elevator in my house!

On to this week's favorites...
ONE - Get Your Flu Shot
It's not too late! Flu season is not over, and you can still get your flu shot. Read my post here to understand why I feel so strongly about this, but please - unless you are allergic, just get your flu shot.

TWO - What is the HFPA?
I will be honest - I will read anything that Caity Weaver writes. She is one of the most engaging and entertaining writers I've come across, while also being actually informative. This column is about the HFPA, but I HIGHLY encourage you to sign up for her newsletter - you will not regret it.

THREE - "Hamilton" in Puerto Rico
I wouldn't be me if I didn't share Jimmy Fallon's interview with Lin-Manuel Miranda as he steps back into the role of Hamilton in Puerto Rico. I know I'm obsessed, but truly - I am continually impressed by how Lin-Manuel keeps doing more and more charity and fundraising work as his star keeps rising. All of the funds raised from Hamilton's run in Puerto Rico are going to the Flamboyan Arts Fund, to help artists on the island after it was devastated by the hurricane.

FOUR - Late Risers
I am not, and never will be, a morning person - this is a fact that I've accepted about myself. But I agree with this writer - the world does try to make me feel guilty for not waking up early and seizing the day! I'm more than happy to seize the day... just a few hours later than everyone else.

FIVE - Cure SMA Guest Post
Finally, a little bit of self promotion - Cure SMA asked to write a post about making and achieving goals, and it went live earlier this week. Do you have any goals set for yourself in 2019?




Wednesday, January 16, 2019

Treat Yo' Self

If you're a Parks and Recreation fan like I am, you recognize the title of this post. I've been wanting to write about this for a while, but I've been struggling with how to write about it without coming across as braggy. Talking about buying things is always a fine line between being excited about things and wanting to share them with everyone, and seeming like I'm just showing off. But sometimes when I'm sharing things that I've bought, it's about more that just the thing itself - it's about the memories behind it.
I've written here before about having to get a feeding tube after I lost a lot of weight and couldn't gain it back. And I think I touched a little bit on how I tried everything else that I could before I accepted that I needed it, but it's hard to explain how badly I did not want it. The thought of getting a feeding tube made me want to cry (to be fair, almost everything related to the weight problems I had then made me want to cry), and I really, really tried to do every single other alternative first. It took a lot, mentally, for me to accept that I had to get over my fears and schedule the surgery. Looking back years later, I wish I had faced those fears earlier and saved myself a lot of time of feeling really horribly - the feeding tube improved my life drastically, and really, really quickly.
When everything was over, I bought myself a sapphire ring that I wear every day (to this day! You can spot it in basically every single picture of me that I post) to remind me of not only went through, but what I was able to overcome.

So when 2018 ended, I knew that I wanted to get myself something to commemorate all of the exciting things that happened during the year. I've always been a handbag person - it can be hard for me to find shoes and clothes that fit, but I don't have to worry about sizing with bags! I searched for quite a while, and finally decided on this bag (I got it slightly on sale - you can still get it at that price in this pink/red color combination). I love the black and tan color combination, and how timeless the style is. Just like the sapphire ring, this is something that I'll be able to use for years to come.

Tuesday, January 15, 2019

What I've Been Reading

I always get a lot of reading done in the end of December and early January. With my break from classes, I have a lot more free time, and I love using it to catch up on reading. I can only binge so many episodes in a row on Netflix before I need to do something else. You can see what I read below, and let me know if you have any good recommendations for me.
Crazy Rich Asians Trilogy by Kevin Kwan
I saw the movie when it came out over the summer, and I finally had time to read the books that the movie was based on. I was happy to find that the the movie had stayed pretty true to the book. Of course, there was more detail/character development in the books - plus, it's a trilogy, so the books continue past where the movie ended. They're a fun, light read.

Becoming by Michelle Obama
I loved reading about Michelle's take on her time in the White House (and leading up to it). Her story focused on the personal details, which are, in my opinion, the most interesting to read. She's a great author, and it was fascinating to learn about how her history led up to her being the First Lady.

A Well-Behaved Woman: A Novel of the Vanderbilts by Therese Anne Fowler
 This book is historical fiction about Alva Vanderbilt. I basically knew nothing about the Vanderbilt family, other than the fact that they are incredibly wealthy (and that Anderson Cooper is related to the family). But apparently, Alva did a lot to support women's equality work - it was fitting to read this right after Becoming.

The Clockmaker's Daughter by Kate Morton
This may have been my favorite of the bunch. It focuses on a few different main characters, spanning decades, but is so satisfying when everything comes together. It's a bit of a mystery, but not in a typical way - it's hard to explain without giving too much away, but I highly recommend it!

One Day in December by Josie Silver
I decided to read this one after seeing it on Instagram, and I'm really glad that I did. It's another quick read with a love triangle of sorts. It's the perfect book to read on a cozy day in in January.

The Song of Achilles by Madeline Miller
I loved reading Circe by the same author, so I was incredibly excited to start this one. Most of my knowledge of Achilles and Odysseus comes from Wishbone, so maybe not the most accurate but I did at least recognize the names of most of the characters. The plot was so moving, and the ending will stick with me for a very long time.

Ghosted by Rosie Walsh
I picked this one up after seeing it on Carly's blog, and it was a great choice. It's a love story, but there are so many twists and turns - many times, my guesses about what was happening were completely wrong. I could not stop reading - I finished it in one day because I couldn't put it down.

Monday, January 14, 2019

Hamilton in Pittsburgh

If you live in, or near, Pittsburgh, you probably know that "Hamilton" is here right now! Of course, there was no way that I was missing the show since I've traveled to New York twice (here and here) and celebrated by 30th birthday in DC by seeing the show (here)!
I saw the show this weekend, but before the show, I went to a really cool event at the Heinz History Center last week called "Hamilton Remix." Historian Richard Bell came to talk about Hamilton the show vs. Hamilton the man - where the show accurately depicts history, and where it deviates a bit. What was really fun, though, was that the lecture did a really deep dive on everything about the show, including the references to other musicals hidden in Hamilton lyrics, and even the rhyme schemes used. I didn't fully agree with all of the arguments he made, but the talk did remind me - and everyone else - that Hamilton wasn't a perfect man. He definitely had some ideas that we wouldn't agree with today, and could be hypocritical - basically, he was flawed, just like everyone else. But that doesn't make it any less powerful of a show, or Hamilton's legacy any less important.
The event at the Heinz History  Center actually just made me even more excited to see the show. I'm sure that I've mentioned this before, but each time I go to the show, I notice new things happening on stage. I've been very lucky in that the accessible seats in every theater have been really great seats, but this time I was right up front, so I could really see every single thing that happened. I'm continually impressed by the choreography and the staging - each and every single character is doing something on stage, and if you watch really carefully, you'll see the same choreography repeated throughout the show as a call back.

Seeing the show reminded me about the message of inclusion behind it. Lin-Manuel Miranda wrote his first show, "In the Heights," partially because he didn't see anyone like himself on Broadway, and so he wrote his own role. He continued that same message of inclusion for "Hamilton," by choosing a diverse cast that reflects America today to tell the story of America during its founding. I actually talked about the show a few times during my Ms. Wheelchair USA interviews, because I think its message of inclusion is so important, and I love that it does it by showing, not telling. I'm working hard to promote that same message of inclusion for people with disabilities!