Friday, August 31, 2018

Friday Favorites

Happy almost September! September is my favorite month... because it’s my birthday month. I cannot believe that I’ll be 30 this year! I know that some people dread getting older, but I actually look forward to it.
I am holding on to the end of summer for as long as I can. Part of that, for me, means wearing this dress on repeat. It’s the perfect end-of-summer piece to bring me into fall. I may have worn in twice in one week... I am obsessed.

I am also obsessed with...

The #Hamildrops this week
There were three separate #hamildrops this week alone (although only two were released at the time of this posting). They’re both so amazing, but the Andra Day music video one is my favorite - I love how the song translates so easily to modern day.

Dogs dressed up
I couldn’t resist sharing this New York Times article with cute, dressed up dog pictures - this is totally my kind of thing. How adorable are they?! Lily has her share of outfits, though I’m not sure that she loves them... but I do!

Night owls versus early risers
I am such a night owl - always have been, always will be. I have forced myself to learn to get to bed earlier during the week because I need to for survival in the working world, but when the weekend rolls around, I go right back to my night owl habits. I know that all the research says to stay on a consistent sleep schedule all throughout the week, but I cannot force myself to get up early on the weekends. So I'm a fan of anything that supports my night owl habits!

Chef José Andrés
One of my favorite restaurants ever is Zaytinya in DC, which is under the direction of the chef José Andrés. The food, decor, and service are all incredible. And what makes it even better, in my opinion, is what a great man Andrés is outside of the kitchen. He's been working to feed people after natural disasters - he went to feed people in Puerto Rico after Maria, and got to many parts of the country before any other aid had made it's way there.

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

Wednesday, August 29, 2018

My Life in my Wheelchair

I realized that I've never talked about my wheelchair here, which is a little bit crazy considering that I spend 90% of my waking hours in it! I know that I spend a lot of time and energy focusing on how I'm more than my wheelchair, and more than my disability, and none of that has changed. But my life would be very different without my wheelchair, so I wanted to tell you all more about it.

I don't think people realize how incredibly customized power wheelchairs like mine are. Driving a wheelchair isn't like driving a car - I can't just sit in any power chair and be able to get around. My chair has to be sized to fit me exactly. As I get older and require more physical support, too, the amount of customization that I need gets even greater. If I just sit in a regular wheelchair, I wouldn't be able to support my torso without a lot of effort. And then that makes doing everything else harder - or even impossible. And my wheelchair only lasts about five years or so, because it gets difficult to replace broken parts after that. So every five years (give or take), I have to go through the whole process again... getting measurements and ordering a new chair, waiting for insurance approval, taking the time to go through the customizations, and just getting adjusted to the driving and feel of a new chair.

That's why a broken wheelchair is such a hassle to deal with - I can't just rent a new wheelchair for the day. Customized power chairs are not only extremely expensive (think over $20,000), but also just not easily available. And that's why every time I fly with my family, we have to cross our fingers and just hope that the airlines take good care of our chairs, because a damaged wheelchair on vacation could derail the whole trip.

But the funny thing is - when my wheelchair is working correctly, and fits me well... I honestly don't even think about it. It's such a part of my life that it's just there, a given, something that doesn't even cross my mind. That's how my wheelchair can be such a large part of my day-to-day life, and yet such a small part of my identity at the same time.

Tuesday, August 28, 2018

New Season, New Clothes

To me, the end of August and beginning of fall means new beginnings more than New Years Eve does. For so many years, August was a new school year - a chance for new notebooks, pencils, binders, folders... and of course, new clothes.

I'm technically still a student, but even if I wasn't, I'm pretty sure I'd still think this way. There's just something about summer winding down that makes me want to make lists and plans and start things fresh.

And it also makes me want to shop. I've been trying to cut back a little bit on my online shopping the last month or two, but I have picked up a few things to start my fall semester with! I'm sharing those, and some other favorites, below. I've been really into (faux) leather skirts lately, so there's a few of those, plus a nice mix of things to wear now, and things to wear when the weather cools down.

Plus, Sephora is having one of their VIB sales, which are definitely worth taking advantage of. VIB Rouge members have 20% off, and access to the sale now, and VIB members will get 15% off and access next week. That might not sound like a lot, but most of these things are things that you'd be buying anyway, so now is the time to stock up on anything that you've been wanting. I'm sharing my standard favorites, plus a few fun things that I have my eye on.

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

Monday, August 27, 2018

Whitehall Borough Person of the Year

This Saturday was an incredibly exciting day for me - in Whitehall Borough, it was officially "Heather Tomko Day."

Whitehall is where I've lived my whole life, so it was a special honor to be chosen as this year's Person of the Year, and to be given my own day and official proclamation. It's always exciting to be honored for the advocacy work I'm doing, and for winning Ms. Wheelchair USA. But I'm especially grateful to be honored in the community where I grew up and went to school.
I was incredibly lucky to live in a community like Whitehall. Growing up, I can honestly say that I never felt left out or excluded. I'm sure that part of that is because I found an amazing group of friends, most of which I'm still close with to this day, but I think a lot of it is because the greater community, as a whole, made sure that I was included. Schools were renovated to add elevators, and we worked with the district to ensure that I was in the same classes that everyone else was. I didn't even have a classroom aide with me for most of the time, I just had friends in my classes to help me. This was so important to me, because it went a long way towards giving me the independence that I craved, and making me feel like I fit in.
I know that bullying is a huge problem right now in schools, and an even larger problem for children with disabilities, but it wasn't something that I ever experienced. I always joke that if I was bullied, I didn't know about it, so it didn't bother me, but truly - I cannot think of one instance where I was made fun of or mocked because of my wheelchair. And while I may not have realized it at the time, I'm sure that went a long way towards helping me feel comfortable in my wheelchair, and not making me feel like my wheelchair was the only thing that people saw.

That's why this honor is so special to me - growing up where I did, in the community that I did, helped shape me into who I am today.

Friday, August 24, 2018

Friday Favorites

I have an exciting weekend coming up - I'm excited to announce that tomorrow, I'm being named Whitehall Boro's Person of the Year! If you live nearby, you can come see me at Whitehall Community Day around 10:30 AM at Snyder Park.

I can't believe that I start fall classes again next week - I'm not ready for the summer to end yet! Luckily, I still have a few more exciting things coming up before winter and cold hit.
What have I been reading this week? Read on...

Olay's new campaign
I love how diverse Olay's new campaign is! It is really, really rare that I get to see someone with a disability included on a campaign done by any major company, so I was really excited to see Jillian Mercado's name! You should check out the campaign, and also read more about Jillian and the cool things that she's done.

American Horror Story returns
The first season of American Horror Story has always been my favorite - the storyline and the characters and twists hit just the right (weird) note. The new season of the show is supposed to tie in previous seasons, and Connie Britton is coming back. I'm excited to see what happens, and how they tie everything together!

Happy Birthday, Gene Kelly
Gene Kelly is a music theater legend, a Pitt graduate, and a Pittsburgh native. It would have been his birthday this week, and we love to recognize a Pittsburgh legend! Read more about his life in Pittsburgh, and his time on Broadway. 

Wednesday, August 22, 2018

Upgrading My Technology

It’s no secret that I’m a fan of Apple products. I kind of feel like once you have one, it only makes sense to get more, if you’re choosing between Apple and non-Apple products, because they all work together seamlessly. I can pair my AirPods with my phone, my laptop, or my iPad seamlessly. I also really appreciate that they build accessibility into so many of their designs. Their packaging is made so that you can open without scissors, sure, but it’s also made so that someone with limited mobility/strength (like me!) can putt it open easily at the tabs. And their accessibility options on their devices are a streamlined way of adapting to many different types of disabilities. These things are all simple, but all show that Apple is designing with accessibility in mind, and I’m on board.
I’ve written before about how, for me, technology can be more than just something fun - it can be a tool, something that makes it easier for me to be more independent. I got my first iPad (the original Mini) back in 2012, and it’s something that definitely falls into that category. When I was young, I’d come back from the library with a stack of books so high that I could set them on my lap and rest my chin on them! But as I got older, it got more difficult to carry around physical books all the time, and hold/balance them. So being able to read ebooks on my iPad has made things so much easier for me. And when I started grad school, I realized that it was great for taking notes in classes, too. I could download the slides my professors posted and then take notes on them on the iPad itself. It was so much easier for me than having to print slides before each class and carry them, plus any other note paper, previous notes, or other things that I needed to bring.

School starts again for me next week, and I decided that it was time to upgrade my iPad before the semester started. They’ve come a long way since I bought mine six years ago. Technically, mine still works, but it wasn’t going to make it through a semester of note-taking. I did some research to figure out what model I wanted to get next - for me, a bigger size isn’t necessarily a good thing, because I need it to be small and light enough that I can lift it and carry it around with me. So I was deciding between the iPad mini and the regular iPad, and ultimately decided on the regular iPad.

What sold me? The compatibility with the Apple Pencil. When I used my Mini to take notes, I bought multiple styluses to try out, but none of them worked really well. The Apple Pencil works so seamlessly; it’s really amazing. Plus, there’s an app that one of the employees at the Apple store showed me, Nebo, that translates what you handwrite in the app into text documents/PDFs - and it only works with the Apple Pencil. I also got this great Bluetooth keyboard/case, which basically makes my iPad into a small laptop! The typing feels the same as typing on a regular keyboard - your fingers don't feel cramped (or, at least, mine don't!).

I’m sure there are a lot of other features that I don’t know about yet, but I think my new iPad will be perfect for me as a student, and is also still light enough for me to use when I’m reading outside! It was a big purchase, but something that I definitely think is worth it.

(This post uses affiliate links; I may earn a commission from any purchases you make.)

Tuesday, August 21, 2018

SMA Awareness Month: Other Perspectives, Part 3

For the third guest post in my series for SMA Awareness Month, meet Alyssa. She and I met through Instagram also, and I'm so happy you get to read her story! I actually mentioned her in this post, here.
I’m a firm believer we are given two choices that could make or break the direction in which our lives are headed in. We can either a) let our circumstances control us and our outcomes or b) control our circumstances and decide not to settle for anything less. When given the choice, what would you choose?

Friends, the name’s Alyssa. I am 27 years old living with SMA type I, and I have spent most of my life learning how to take control of my circumstances despite any setbacks or obstacles that come in my path. I may be in a wheelchair, restricted to very limited mobility (I’m currently using just my index finger to type this!), and faced with more challenges than many of my peers, but I am never going to let SMA have the upper hand. Heather has done an incredible job bringing awareness to this disease and giving a glimpse of what life is like through a personal account, but now, she has asked that I share my own story with SMA. And I am more than happy to do so.

My story with SMA began in April 1991. I was just shy of turning 6 months old when my parents received the fateful news that their baby girl had a rare, genetic disease that was known as spinal muscular atrophy.

To be rather blunt, I was given an expiration date on that day. At the time of my diagnosis, knowledge on SMA was sparse. The internet was barely a thing. And, SMA wasn’t on the forefront of people’s minds. My fate was determined by two sentences in an old medical journal by a doctor who, unfortunately, had very little information readily available at his fingertips.

According to that journal, I wasn’t going to live past the age of two. I wasn’t going to grow up and conquer the world because of a genetic mutation in my DNA that would cause my muscles to weaken and fail. But, through the power of faith, love, and the mindset that I was going to be in control of my life, I have accomplished more in my 27 years on this earth than I could have ever imagined. I earned my bachelor's degree in marketing, founded a nonprofit organization that has raised hundreds of thousands of dollars for SMA, and I started a blog that chronicles my life with this disease. I even became the first adult to receive the first-ever treatment for SMA: Spinraza.

Here’s the thing, though. With every accomplishment first came a struggle. Living with SMA is not easy. It’s exhausting and defeating, and I can honestly tell you that some days are really hard. Some days, I do give into my exhaustion and accept defeat because, truthfully, I have no other choice when my body has been pushed beyond its (low) threshold. But, in that moment of struggle is where I always find my strength. It’s where the opportunity to take control of my life comes into play. It’s where I realize how I choose to handle my hardest days is what makes all the difference.

Whether it’s SMA, another illness, or simply the everyday trials and tribulations of life, I hope you remember that. I hope you remember that, at the end of the day, you are in control of your life. Because the moment you make that decision to not be constrained by your circumstances is the moment you can begin to live an abundant life.

Monday, August 20, 2018

No-Work Weekend

This weekend was, in my mind, my last weekend of freedom before the fall semester starts. Technically, there's one more weekend before I actually start classes, but it's booked up with activities already so it doesn't feel "free."

While I really do enjoy my classes, but I've been in school now for five years working towards my MPH - it's been a long road. When I'm taking a class, I have to make sure that I leave one weekend day reserved for doing homework, because there's never enough time during the week for work and blogging and school and everything else that I need to do.

So I'm writing this post at 8:42 Sunday evening, because I wanted to just keep my weekend open for fun. I didn't do any work this weekend - nothing for school, nothing for my blog, no e-mails. I might be up a little bit later tonight than usual, but it's totally worth it.

So what did I do? I went to a happy hour for a friend's birthday, did some shopping for a new purchase that I'll share later this week, went to a fun game night, and saw some great movies. Both of the movies were amazing, and I think everyone should see them.

The first was a Netflix find - "To All the Boys I've Loved Before." It's a cute romantic comedy about a girl in high school who discovers all of her crushes found out she liked them. It kind of reminds me, a little bit, of the John Hughes movies from the 80s. It's really cute and sweet, and I'll definitely be watching it again.

The other movie was one I went to the theaters to see - "Crazy Rich Asians." I haven't read the book yet (though I really want to!), but the movie was so good all on its own. It's also a romantic comedy, and it's the perfect blend of romance and comedy - I was laughing out loud so much during the movie. The plot and the acting were obviously amazing, but I also loved the fashion in the movie. So many beautiful clothes that I wish I could own. And just thinking about the lavish, over-the-top lifestyles of the families in the movie just totally blows my mind.

I'm really glad that I decided to enjoy my weekend. Sometimes, I have to take a step back and put my to do list on hold. Those things will still be there during the week!

Friday, August 17, 2018

Friday Favorites

The summer really seems to be flying by - I can't believe that in a few very short weeks, I'll be back to taking classes (in addition to working). I'm excited to get another semester closer to finishing my degree, but it's going to be a rough adjustment after having the summer semester be class-free.

Interview on Disabilities Redefined
I can't help but start this week's list of favorites with some shameless self-promotion. I was interviewed for a YouTube podcast called "Disabilities Redefined," right after I got home from the Ms. Wheelchair USA pageant, and the episode went live earlier this week! I love the concept of the podcast - give my episode a listen, if you're interested, and also check out the other amazing interviews.

Taylor Swift's Concert Speech
Regardless of whether or not you're a fan of her music, you should listen to the speech Taylor Swift made during her show that fell on the one-year anniversary of her sexual assault trial. I think her speech hits on some powerful points about believing women, and it's clear by her voice/demeanor that the subject is still raw. She hasn't been doing any press for this tour, so I'm glad she took this opportunity to speak.
Lilly Singh's Interview
This is a great interview on success - what it means, working towards it, and how you can push yourself towards success. I think she glosses over actual, clinical depression a bit (and I think she catches herself and tries to redirect), but I think it's a good listen for anyone who is working to achieve something.

Oral History of Respect
In honor of Aretha Franklin, I wanted to share this article that Elle published back in 2016. It's the story behind the song, and how Aretha took Otis Redding's song and re-made it into the feminist anthem we know today. And of course, listen to her sing it, too - her voice is so powerful. 

Thursday, August 16, 2018

SMA Awareness Month: Other Perspectives, Part 2

For the second guest post in my series for SMA Awareness Month, meet Alex. She and I met through Instagram, and I'm excited she agreed to share her SMA story with us!
SMA is a huge part of my daily life and affects almost every move I make, but hardly ever crosses my mind, except for very recently. Two major things have made me think about SMA in a meaningful way: I just started receiving Spinraza, and August being SMA Awareness Month.

I’ve been flooded with a sea of emotions as my first Spinraza injection date approached at the speed of lightning. The week preceding my first injection flew by faster than any week in my entire life. During that week, I thought about how my life is going to be forever changed due to this new shiny, very expensive drug that is saving other people who have my disease.

Growing up with SMA, I had a seemingly normal childhood. I was what they call a “strong” SMA Type II — meaning I was strong for the type of SMA that I was diagnosed with. My most joyful memories involved swimming. In the water, my body was free of my wheelchair and moved with ease in the weightlessness of the water. My friends and I would spend countless hours during the summertime being little fishies, having our parents drag us out of the pool as dusk would arrive after seeing our very pruny fingers.

I’ve always had a very headstrong and determined attitude, which translated into an angry, rebellious teenager. The administration of my high school made it a point to make sure I was treated like my disability was the only part of me they saw. The logical thing for a teenager to do in this type of suppressed environment is to rebel, and that’s exactly what I did. Rebelling revived my sense of autonomy that the school was so quick to take away, which is one of the most detrimental things you can do to someone with a disability. But, things got better.

I went away to college - five hours away from home to Southern Illinois University in Carbondale, Illinois. Many people praised my mom for my bravery for going so far from home all on my own, not knowing anyone. My thought process as my parents dropped me off that very muggy and humid hot August day: “I’m free and can do my own thing finally. Oh, there’s a cute boy, this is going to be fun.” I’m sure many other freshman had a very similar thought process. After all, we are the eager minds of tomorrow...

During college, I learned to manage my personal care, which was my biggest challenge and still is. Relying on people your age and younger to show up when you have to eat, use the bathroom, or get in bed poses its challenges. But I learned. I developed a system and mindset that worked. After failing 3/4 of my classes my first semester and going to a few dozen frat parties, to becoming a model student on the Dean’s list, winning a scholarship, and starting my own student organization, I graduated with a degree in Rehabilitation Services.

I then began a new post-college journey living in the city of Chicago a year ago. After applying to jobs in my field with no success and having one of those enlightening life changing moments, I became an Instagram blogger and business owner. I started sharing my life with the world through some photos and blog posts on Instagram which started gaining traction. I started developing “fans” and people who believed in me and were inspired by my life. Because of that support and social media traction, I was able to start WheelchairRapunzel & Co., which is my online shop where I sell my Love Your Genes merchandise. While Love Your Genes was conceptualized on the basis that I have a genetic disease, it has turned into an all inclusive movement of acceptance and empowerment. Genes are what makes your beautiful self, you.

Life never goes as planned, especially when you have SMA. But, I’m so thankful it has led me here, to SMA Awareness Month. To me receiving my second Spinraza injection. To my company that was created because of my disease, raising money for my disease. This month I’m donating a portion of every WheelchairRapunzel & Co. order to CureSMA, because a cure is within reach, and that is something we can plan for. You can go here to shop and support SMA research all month long

Tuesday, August 14, 2018

Online Shopping: TheRealReal

I've been trying to cut back on my shopping a bit, mostly because I did a lot of online shopping before my trip to Florida and the pageant. It's good for my wallet, but it makes it a bit more difficult to share outfits and shopping finds here. So I thought instead of sharing anything specific that I've bought, I'd share one of my new favorite places to shop.

I have always been known to have "champagne tastes on a beer budget." I have a talent for picking the most expensive thing without trying, whether I'm shopping or choosing a meal off of a menu. I just like nice things... but I definitely don't have the budget to match my tastes, currently.

I've also been trying, little by little, to focus less on quantity of clothing and more on quality. I still love places like H&M and ASOS because they're affordable and they make clothes that fit me, but I also know that the things I buy from those places aren't necessarily going to last forever. And that's fine! But I want to build a little more of a wardrobe that will last from season to season.

Enter TheRealReal. It's an online consignment store - I mentioned it here because it's actually where I got my evening gown for the pageant. It's definitely more upscale - you can find a lot of designer pieces - but that doesn't mean you can't find things for everyday wear. This skirt, from my post about my Apple Watch, is from TheRealReal, and I love it, and I bought the skirt in the picture above there as well. The site makes it really easy to sort based on size and type of clothing, and they tell you the condition that each piece of clothing is in, which I've found to be really accurate.

Something else that I've been trying to be more aware of is the sustainability of fashion, in general. As someone with a disability, there are lots of sustainable practices that aren't feasible for me (see this post about plastic straws, for example). But clothes are an area that I can try to think about more sustainably. That's not to say that I'll exclusively shopping consignment from now on, but I'm trying to be more open to it.

Since I can't share the exact things I've bought from TheRealReal with you (that's the downside of consignment!), I've pulled together some of my favorite finds in the widget below.

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

Monday, August 13, 2018

Going Digital

It pains me a bit to say this, but now that it's mid-August, I have to start to get myself back into the mindset of the new semester starting. For the first time since I started my master's program, I had the summer off from classes, because I've already taken all the classes offered in my program during the summer. It's been amazing to have a break from classes - if I had been taking a class, I definitely don't think I could have taken part in the Ms. Wheelchair USA pageant, so I'm very grateful. But the fall semester will be here before I know it, and I need to start preparing.
I have a lot going on right now - lots of different responsibilities to juggle, and schedules and to-do lists to stay on top of. So I need to up my organizing game, so to speak. I've always been a paper planner person, but I've decided that it's time to bite the bullet and move over to a digital calendar. As much as a like writing things down, that means that I have to always have my planner with me to write things down in! And that's just becoming more of a hassle than a help. I have limited "lap space" to carry things around with me, so if there's an easier digital solution, it's finally time to embrace it.

I always hesitated going completely digital because I hate the calendar app that comes with the iPhone - it just doesn't display things in a way that I find intuitive or convenient. But I recently downloaded the Google calendar app, since I rely on Gmail anyway, and I like it so much more. I'm hoping that I'm able to stick with it longer than I do when I try to use my paper planner! If you have another calendar app that you think is the best to use, let me know - I'm definitely still exploring.

A few semesters ago, I also went digital for my in-class note taking. I use my iPad Mini to read, of course, but also to take notes during class - I can download the PowerPoint slides, and then take notes directly on them. It's made things so much easier for me - I don't have to carry around 50 pages of printed out slides, and I don't have to worry about not having a table to put all of my things on (which, depending on the classroom, has been an issue).

I'm hoping that these digital switches can help me keep my organization strong. If you have any tips or tricks, let me know!

Friday, August 10, 2018

Friday Favorites

This week was a shorter than usual week for me, because I took off Wednesday from work because of the Taylor Swift concert on Tuesday night. It was totally worth it - the show was incredible! I know there were some complaints (months ago) over the way she used the Ticketmaster Verified Fan process for ticket purchasing, but from my perspective, it worked out really well - it was the only time in the last year that I haven't had issues buying accessible seats on Ticketmaster! I had a great view of the stage, and also spotted the ASL interpreters for the show. I was really impressed by how seamless the inclusion was.
Now, onto my favorites from the past week.

National Pug Day in Japan
My childhood dog was a pug - yes, the dog with the really smushed nose and curly tail - and I'll always have a soft spot in my heart for pugs. So obviously, I love this Buzzfeed article with super cute pictures of pugs dressed up for National Pug Day!

Legally Blonde 3
I cannot believe that Legally Blonde 3 is actually happening, and I'm so excited. I love the movies and I love the musical, and I can't wait to see what Elle and Bruiser are up to now. Are any of you looking forward to this too?

Doctors with Disabilities
This is a fantastic article about physicians (and others in the medical field) working with disabilities. To me, the benefit of having doctors with disabilities seems obvious. They bring a fresh perspective - who better understands how to improve the medical field than someone who has a lot of experience utilizing it? Who better to understand the needs of patients than someone who has been a (possibly frequent) patient themselves? I'm so glad to see that the field is becoming more open to practitioners with disabilities.

Changes to Sephora's Beauty Insider Program
I buy almost all of my makeup from Sephora, and I've accumulated quite a few Beauty Insider points. I don't redeem them often, honestly, because I'm never sold on the Rewards that they're offering. So I'm interested in seeing what changes they end up making to the program, and if there are rewards that I'm more interested in redeeming points for.

Wednesday, August 8, 2018

SMA Awareness Month: Other Perspectives, Part 1

I thought that this year for SMA Awareness Month, I'd share a few posts by other people I know who have SMA, so that you get to hear different perspectives and life stories. And of course, who better to be first than my sister?
Hi all, Jess here! I’m the other Tomko sister. The one who is everything that Heather is not.

Anyone who knows my sister and me knows that we are polar opposites. Anyone who does not know my sister and me thinks we’re the same. I don’t mean figuratively the same - I mean they literally think we’re the same person. It’s an interesting phenomenon, really. We are two individuals with different hair colors, different facial features, and different body types, and yet our one commonality (the wheelchair) blurs and masks all of our individualities.

I tend to be very cognizant of how I appear to others. Self-awareness is great and all, but it took me some time to realize that I do not need to act as a representative at all times for individuals with SMA. While it’s true that my behavior will influence how a person sees my particular subset of the disability community, I am not responsible for the entirety of society’s perception of people in a wheelchair. And honestly, I care far less now than I used to what people think of me. These random people are not going to even get close to scratching the surface of my identity, so why bother trying so hard to lead them in the correct direction? That energy is better suited to more productive ways of making change and connections. Like, for instance, this blog post.

Connections, shared experiences, honest conversation, and receptive listening are all agents of change. But more importantly, people are agents of change. We’re told to focus on our similarities because that’s what will bring us together, but I don’t completely agree with that. Let’s (respectfully and compassionately) talk about our differences too because they are what make us unique. Ignoring our differences will only cause them to remain shadowed and us to remain ignorant.

Most days I don’t view my disability as the most prominent part of my identity. It’s in there somewhere between woman, university-employee, feminist, mind-wanderer, nerd, daughter, sister, and music-lover. Next time you see someone around and have that almost instinctual urge to categorize or classify someone, even if just in your head, I encourage you to take a beat, and maybe just don’t. Instead, just give a friendly Pittsburgh hello and make Mr. Rogers proud.

Tuesday, August 7, 2018

Time Makes All the Difference

I'm really excited - tonight, I'm going to see Taylor Swift at Heinz Field. This isn't my first time going to one of her shows - they're always such an amazing time, and everyone in the audience is having a blast.
But thinking about going to tonight's show makes me think back to the last time I saw Taylor Swift. From the pictures, you wouldn't know that anything was wrong - sure, I look a little skinny, but I look happy and excited just like everyone else in the audience. In reality, I distinctly remember what a rough day that was for me. I hadn't yet gotten my feeding tube, I was desperately trying (and failing) to gain weight, and I was just flat-out exhausted all of the time. I was worried about my weight all the time, too, which just made me stressed and emotional, and there were a lot of questions about my health - was I going to need a feeding tube, why couldn't I gain weight, how was I ever going to feel better, was this really a physical problem or a mental one?

Going to concerts in general require a lot of logistical planning for me - timing drop off and pick up before and after the show, plus planning out my bathroom timing strategically... it's a real art. So then, when I had to add worry about what I would eat at the show, and if I'd be able to make it through the concert without feeling like I couldn't breathe, it was just too much for me. I lost it before the concert - I just started crying and couldn't stop. I am not quite sure how I got it together before the concert, but I did make it. And while the concert itself was great, the memory from earlier that day definitely lingers.

It's crazy to me how much has changed for me since then. It was hard to imagine ever feeling better again, but now that I do feel better, it's hard for me to imagine how I could have felt that bad for that long. Perspective really is a funny thing.

With that all being said - the memory of that low makes me even more excited to see the show tonight. I'm so appreciative for how much better I feel, and looking forward to being able to enjoy this concert worry-free!

Monday, August 6, 2018

Taking A Forced Time Out

I've gotten really good at knowing when I have some sort of respiratory cold or infection, and being really careful to take care of myself so that it doesn't get worse and turn into pneumonia. But apparently, I'm still learning about reading all the signs of my body! I think the exhaustion of pageant week caught up with me, plus coming home and going right back into work... I found out that the area around my feeding tube got infected.

This isn't something that has ever happened to me before (which I guess is something to be happy about), so I didn't really know at first if it was a real issue or just something temporary. But I'm really glad I decided to get it checked out.

Having the infection forced me to take a time out from life - I knew that this was a sign that I needed to rest and recover, and I wasn't really feeling up to going anywhere, either. So I got some much-needed relaxation. I did do a little bit of blog post writing, but mostly, I watched TV/movies and read.

So, what did I watch and read?
Baby Teeth by Zoje Stage
I've been looking forward to reading this because the author is a local Pittsburgher, and the genre is right up my alley - a psychological thriller. The novel is actually set in Pittsburgh, and I loved catching all the references to the area. The storyline sucked me in - I started and finished the book in one day because I needed to know how it ended! It was kind of unsettling, but in the best way. I'm hoping to read more from her in the future!

A Quiet Place
You'll notice a trend of things that I've really been looking forward to. Once I found out this movie cast a Deaf actress, and that a lot of the dialogue actually took place in sign language, I knew it was something that I had to see. I'm not normally a horror movie type person, but this was more suspense/thriller, and I really enjoyed it. It was so different to watch a movie with so little spoken out loud, but it really didn't take away from the movie, at all.

A Wrinkle in Time
I'm so happy I finally got to see this, too! I loved the book series as a child, and am happy to report I loved the movie, too. It isn't exactly the same as the book, but it updates it to bring it more into modern times, and it is still true to each of the characters themselves. The scenery is beautiful, and the acting is all so well done. I loved the surprise Lin-Manuel Miranda quote they stuck in there, too!

Friday, August 3, 2018

Friday Favorites

I seriously cannot believe it's already August. July flew by, and as much as I look forward to September (my birthday month!), I'm definitely not ready for summer to end.

This week was also a busy one for me - I had something going on every night after work! Maybe for some people, that sounds like their idea of a perfect week... but I definitely need more time to wind down and relax after work. Next week, I'm headed to see Taylor Swift in concert, which I've been looking forward to for months!

Here's what I've been loving this week...

Seaglass Carousel
I recently started watching the show Younger, and am now obsessed. The latest episode had a scene at the Seaglass Carousel in NYC. I immediately searched for it online to make sure it was real - it is, and it looks just as amazing as it did in the show. I also found out that they also have spots on the carousel that are wheelchair friendly, so now it's on my must-do list whenever I'm in NYC next!

The Hollywood Con Story
This isn't the first large-scale con story that I've shared here before, but I think they're so fascinating! This one is especially interesting because so many of the targets/victims were such high-level people in Hollywood.

Inventor of Cruise Control
In honor of the 28th anniversary of the ADA, how could I not share the fact that the inventor of cruise control was blind? Designing for (and by) people with disabilities can benefit everyone!

Wednesday, August 1, 2018

SMA Awareness Month

For those of you who read my posts in August last year, I did a whole series on having Spinal Muscular Atrophy (SMA), and the different ways it's affected my life. I'm not sure yet if I'm going to have any sort of series, but I wanted to take a day to talk a little more generally about what SMA is and what it's meant for my life over the years.

SMA is a genetic, neuromuscular disease. Even though there was no family history of it, my parents were both (apparently) carriers of the recessive gene that causes SMA, and my sister and I both have the disease. It means that my muscles are weak, overall - I've never been able to walk, but it's not just my legs that are weak, it affects all the muscles in my body.

This means it also affects my lungs - I have a much lower lung capacity than a person without SMA. A cold can easily turn into pneumonia for me if I'm not careful. So as a kid, I spent time in the hospital - we called it "Hotel Children's," where they got the Disney Channel, which we didn't get at home at the time. And I shared here in this post about what the flu can mean for me.

But my life wasn't all medical appointments and hospital stays. Whenever people ask me what it was like, it's hard to explain, because my life is the only life I've ever known... it's just normal to me! I went to school like everyone else, and had lots of sleepovers (usually, at my house) and time hanging out with my friends. In middle school, my friends at I all put body glitter all over ourselves to get ready for "Teen Center," which was the dance at our school (that also had indoor rock climbing, a movie, a bingo room, airbrush tattoos... a bit of a free for all). I even went to Camp Soles, the annual trip for eighth graders (along with my mom as chaperone), and had a good enough time that my friends and I went back as teen chaperones the next year.

So while SMA definitely affected me growing up (and still affects me now, of course), I lived a more "normal" life than you may have realized! I think this is important for people to realize. I've had a few parents of children with newly-diagnosed SMA reach out to me lately, especially since my name and diagnosis have made the news. And I love it so much when the Internet connects me to someone affected by SMA in any way - I think community and communication are so important! And while clearly, each person's life with SMA is different, I do want people to feel some hope that their life, or their child's life, doesn't have to be totally defined by the diagnosis of SMA.