Monday, May 20, 2019

Quick Dash to Dallas

Last week, I had the most incredible opportunity to take a trip to Dallas to be part of AT&T's Advisory Panel on Access and Aging. I had been invited earlier in the year, but didn't exactly know what I was getting myself into.

It turned out to be really amazing. It was so exciting to be around a group of people who were also so excited and passionate about accessibility issues. We learned about some great products, but maybe more importantly, had some great discussions about disability and aging and access and everything in between. I can't talk about the details of the meeting itself, obviously, but it was just so invigorating to be able to take part in. I'm really so honored that I was asked to take part in it. Sometimes I feel like I'm a little bit out of my league at things like this, but I really felt like I was able to take part in the conversations and add to the discussion.
We stayed in the beautiful Magnolia Hotel, right in the very heart of downtown Dallas, very conveniently across the street from AT&T headquarters. It was the perfect location for walking around downtown. I didn't have a ton of time to explore the city (although we did head down a day early to visit with family, which was so fun!), but what I did get to see was all easily walkable.
I was a little bit surprised - for a city as big as Dallas is, I ran into a lot of sidewalk corners without curb cut ramps, so we had to do a lot of backtracking and lots of weird, circuitous paths to make our way around. I also didn't love the streetcar tracks all over the streets - they were SO bumpy and I had to cross them so slowly that the time to cross the street was basically over before I could even make it across! That one is less of an issue and more of a personal preference, but I'm sure I'm not the only wheelchair user who feels that way.

On the plus side, though, we had the best accessible minivan rental experience that we've ever had when traveling! Renting an accessible minivan isn't quite like renting a car - you can't get one from any of the major car rental companies. You have to use a company that specifically does wheelchair-accessible vehicles. One company we called said that they only do airport drop-off/pick-up Monday-Friday during normal business hours? Your flight arrives outside that window? You're out of luck. But we found Premier Accessible Van Rental, and they made the whole process SO easy and smooth and seamless. If you need an accessible minivan rental in Dallas, I highly recommend, and they're not paying me to say that!
The rest of my time there, I just explored - checked out the JFK museum, quite a few local coffeeshops, and the Dallas Museum of Art. I was really bummed that I was two days too early for the opening of their new Dior exhibit, but a kind docent did let me into the outer room to let me get a picture with the amazing dresses.

It was such a great trip, but felt way too short. I'm looking forward to next year's meeting already!

Monday, May 13, 2019

Straw Bans Revisited

I first wrote about the proposed plastic straw bans (and why I'm against them) almost exactly one year ago (read that post here). They may not be in the news as much as they were a year ago, but that doesn't mean that they're not happening. I actually think it's even worse - they make the news less, but they're remarkably persistent and keep popping up places that I wouldn't expect them to.

And it's not only all-out bans - it's shifts in what kinds of straws a restaurant or cafe will stock, by choice. I ordered a cappuccino out the other day, and unknowingly picked up a compostable straw, which was the only kind they had. It melted the SECOND it hit the hot coffee. It was almost funny how quickly it went from a straw to a wiggly blob. The compostable straw was completely unusable in a hot drink. And based on many life experiences, I can say that a paper straw would have been only marginally better.

So why not use a reusable straw? Carry a silicone or metal or glass one around for me to use whenever I want? It really all comes down to independence.

When you have a disability, small gains of independence are hard-won. I need help for so many parts of my day-to-day life; there are just a lot of things that I can't physically do alone. So I really treasure the moments that I do get to be by myself, and the things that I can do without assistance. And right now, one of those things that I really look forward to is going to Starbucks to get my cappuccino on my own. Mobile ordering make things even easier for me - I can place an order for the drink I want, it'll come with the right amount of milk/sugar that I specified (and I don't need to ask for help with that while I'm there), I pick up a straw so that I can actually consume my drink, and I leave. Simple, right? It's basically the same process for everyone.

Once Starbucks takes away those plastic straws, though, things get a lot more complicated. I order my drink, just like above, it's prepared, and I go to pick it up. But once I get my cappuccino, how do I drink it? Let's even assume that I am carrying around a reusable silicone straw, and that I'm able to get it out of my bag on my own. First, this is already a bit assumption - it's something that I need to make sure is always in a specific, reachable spot, because if I forget, or if it slips out of reach, I physically cannot drink my coffee. And then what do I do when I finish my cappuccino? Able-bodied people can just go into the bathroom, rinse it off, and move on with their day. It's not that easy for me, though. I can't get into the bathroom, so I'd have to ask someone to open the door for me, and then once I'm in there, I can't reach the sink or soap dispenser. And while I'm generally pretty comfortable asking for help, asking a stranger to clean my straw is a bridge too far for me. So I'm stuck with a dirty, sticky straw that I have to put somewhere until I'm home. And because I'm not only a once-per-day Starbucks customer, I have to repeat this whole process over again later with another reusable straw.

Maybe this sounds too detailed for you - like I'm blowing it out or proportion and overthinking it. But this is the level of detail that I have to approach every single part of my day with. And that's why I look forward to the things that I can do on my own, without having to deal with my own complicated logistics plus involving someone else for help. And it's more than just the planning - it's knowing that going for a coffee is something that I can do on my own. Banning plastic straws (or voluntarily eliminating them) has so many unintended consequences that people without disabilities just don't have to think about. If you want to stop using plastic straws, by all means, please do that! But don't force me to give up my independence while you're at it.

Monday, May 6, 2019

Pittsburgh Half Marathon 2019

Yesterday was the Pittsburgh Marathon/Half Marathon, which my mom has been running for 10 years now (you can read last year's post here)! Even though it was rainy, the city really comes out and shows up on race day, and it's really fun to see.
For the last 5 years or so, she and some of my friends/family have created a charity team for Cure SMA for the race. It's been so great to be able to have a team running to raise money for the organization that funds the seed grants for so many SMA treatments that are making their way through the approval process.

The thing about my mom running the half marathon, though, is that it means she's not around to help my sister and I get ready in the morning. And when we can't get an attendant to come help, it means it's all up to my dad. My dad definitely does help my sister and I, but he's not used to having to do everything that we need help with, plus get himself ready, and get out of the door on time. And when you have SMA, you can't exactly just rush and make it work and make it out on time no matter what. Things take the amount of time that they take - and they may take longer than they did last year, or the year before that.

All of this is to say that this year, we didn't make it to the race until AFTER my mom and friend had crossed the finish line. It was certainly not for a lack of trying - we woke up VERY early - but it was just the reality of it. It's frustrating for sure, and even more frustrating when you wish you could come up with one thing to pin the lateness on... but there really isn't any one thing. It's every single thing taking just a little too long, and each of those few extra minutes just adds up more quickly than you'd think. And I think this is one of the most frustrating parts of SMA. I'm used to using a wheelchair, that's not something that I even really think about on a day-to-day basis - I've never known anything different. But the way that simple, everyday tasks get time-consuming so quickly - that gets annoying. It's also the part that's the hardest to explain. Not making it to dinner because the restaurant has a step makes sense. Being late because things just took longer than you wanted them to is something that is harder to understand until you experience it yourself.

So, we didn't make it to cheer them on in the crowd, but we still did make it to meet up with them afterwards and congratulate them. It's not what we hoped for, but it's what we were able to make happen, and that's okay.

Friday, May 3, 2019

Friday Favorites

I seriously cannot believe it's already May! As busy and stressful as it was for me, April completely flew by. This weekend is the Pittsburgh Marathon, which is always fun (and tiring, even as a spectator)! I'm looking forward to cheering on my mom and friend as they run the half marathon.

It also seems like the nice weather is finally here to stay! I'm loving it and so happy to see color in the world again.
I feel like I had a mental list of SO many things that I wanted to share this week... and I've forgotten most of them. I do have some fun things to share, though!

ONE - Measles in Pittsburgh
This is so frustrating because it's so preventable with vaccines! Measles are serious and scary, especially for people with compromised immune systems or babies that are too young to be vaccinated. The count in Pittsburgh is up to 5 confirmed cases, and there's still a long while to go before the window for symptoms to appear has officially closed. Please, just get your vaccines - it really is so important! Your decisions don't only affect you.


TWO - ME! by Taylor Swift at the Billboard Music Awards
This song is so poppy and fun and has been stuck in my head/on replay in my headphones for a week now. I loved the performance of the song at the Billboard Music Awards - the production was so over the top in the absolute best way - and it made me so excited for her (yet to be announced) new tour!


THREE - MK and A on Hulu
My sister and I, plus our friends, were OBSESSED with the Mary Kate and Ashley Olson movies when we were younger. We had a specific piece of dialogue from "Winning London" memorized, and would randomly quote it. I cannot wait to watch all of these movies on Hulu (even though "Winning London" isn't actually included)!! I will definitely be marathoning them all.

FOUR - Instagram Changes Coming?
It looks like Instagram is planning to test some potential changes, including hiding the number of likes on photos, in an attempt to take away some of the obsession and competition surrounding number of likes. It would still allow you to see who liked your own picture, but you wouldn't have that information for other people's pictures. Personally, I'm totally fine with this - what do you think?

Thursday, May 2, 2019

Spring Sephora Sale

It's that time of the year again - Sephora sale time! VIB Rouge members get 20% off, and VIB members get 15% off, and it's the perfect time to pick up a few things that you've had your eye on, or that you're running low on.
I like to pick up a few fun things during Sephora's sale - things that I wouldn't necessarily pick out normally, but getting that 20% just makes it seem worth it! I do also stock up on a few tried-and-true favorites that I know won't go bad before I can use them. And I definitely try to make any pricier purchases during the sale period, to get the most out of the 20% off that I can! So here's what I'm picking up from this year's sale...

Bite Beauty Lip Stain in Orange Fizz
I bought this in the bright pink color a few weeks ago, and I fell in love. It's SUPER bright and pigmented, and it really does last like a stain! It feels like a balm, though, which I love. So I decided to pick up the coral color, too - now I'll be ready for summer!

Beauty Blender Set
I use a Beauty Blender for my foundation every day, and even though I was it daily, it still doesn't last forever. This set is just a great deal, and the perfect time to stock up!

Stila Liquid Eyeshadow
This one definitely falls into the fun category. Do I need a turquoise metallic liquid eyeshadow? Absolutely not. But this just looks so fun! I do have other Stila liquid eyeshadows and really like how they apply, so I figured why not go for it?!

Drunk Elephant T.L.C Framboos Exfoliant
I've been using this for a few months now, and I still think it's great. I love the texture of it on my skin, love the mix of AHAs and BHAs - really I just think it's a great product! But it's definitely not cheap, so I wanted to take advantage of the sale.

Charlotte Tilbury Colour Chameleon Eye Shadow Pencil
I am all for easy makeup application, and I love eye shadow pencils/crayons because they make the process so much easier. I had a green eye shadow from Ulta that I loved in high school and wore basically every time I "dressed up" (makeup when I was in high school was VERY different than it is now for kids in high school!). The "smoky emerald" color of this pencil seems like the grown up version of that eye shadow!

Peace Out Acne Healing Dots
These are great for covering up any acne that you have (face or body) overnight and letting them heal. Not only does it keep you from picking/touching, but it actually does help speed up the healing process. These were an impulse, checkout line purchase the last time I was in a Sephora, and I've been using them often and need a refill.

You can click through the widget below to see all of my Sephora sale picks!




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Tuesday, April 30, 2019

Best Laid Plans

This post is another that I'm almost writing as a reminder to myself... but I figure that if it's something that I'm going through, it's something that other people are probably dealing with (or have dealt with), too.
I wrote a few weeks ago about how to deal when you're overwhelmed... which is basically how I've been feeling ever since I wrote that post. Work deadlines, school deadlines, things going on in my personal life - sometimes everything just comes at you all at the same time. And while I've been following my advice as much as I can (basically, just take things one step at a time - don't look too far ahead!), I still have basically felt that I can't quite get out of the hole I'm in. Every time I think that I'm seeing the light at the tunnel, something else comes up that delays things a little bit more, or adds one more thing to my to-do list.

I can be a bit of a control freak, so I don't exactly love it when this happens. While I work really well with deadlines, I work with them so well because I hate leaving things until the very last second. If I have a goal/deadline in mind, I like to be able to check things off at least 24 hours before that, especially if it's work-related. But when things come up last minute, that's not always possible. No amount of list-making at that point is going to let you go back in time and anticipate this happening proactively. Sometimes, you just have to roll with the punches. Stressing out over things not going as expected, and what that will do to your life will just make you more stressed, and it becomes a vicious cycle really quickly.

I think it's especially hard for me because I know how crucial balance is. I'm not someone who can pull an all-nighter anymore - or even survive on 3-4 hours of sleep. That has a serious affect on me physically - being tired just makes every single thing so much harder. And less time sleeping means less time on my feeding tube, which means less calories for me overnight. These are all things I have to be aware of, and careful of. But if I focus on them too much, I go down that rabbit hole of stressing about being stressed - definitely not productive.

So this is just a reminder to me, and to you - things will not always go as planned! It's really important to remember that things will still be ok when that happens, and to not let yourself spiral - because that does not help make things feel like they're more under control at all.

Wednesday, April 24, 2019

When Sidewalks are your Streets

I've been writing a lot lately about how excited I am for spring - and I haven't been lying, I really am so happy for winter to be over. But there is one part of spring (other than the rain) that I don't love - and that's the sidewalks here in Pittsburgh.

If you drive at all in Pittsburgh, you know how bad the potholes in the streets get by the end of winter. The city has a "blitz" every year once the weather starts to warm up, where they try to fill as many as possible as quickly as possible. It makes for a much smoother drive around the city.

There's no equivalent blitz, though, for the sidewalks. Just like cracks in the roads get worse over winter, so do cracks on the sidewalks. It's probably not something that you pay much attention to, unless there's a piece so uneven that it makes you trip. But the "smaller" cracks are things your probably don't notice at all. However - I notice. I notice a lot! It's something that I actually have to pay constant attention to. Think about that noise that your car makes when you go over a pothole too quickly - it's basically the same for me in my chair going over cracks and holes in the sidewalk. Not only could it damage my chair (which can take a while to repair, and leaves me quite literally stuck while it's out of commission), but I could actually get hurt if I wasn't careful! I could fall forward, or sideways... or really any direction - I could really get thrown by a big enough bump if I was going too quickly. My wheelchair has shocks, but they can only do so much. A lot of up-and-down bumping and jumping over cracks really starts to wear on me, physically, after a while. It's actually tiring, too!

So I'm constantly looking down while I drive around. I have to move around and swerve constantly to find the least-cracked part of any given sidewalk that I'm on. I think I probably look like I'm drunk and can't stay on a straight path - and I'm sure it makes it more difficult for people to walk around me! But if I don't, I have to go so super slowly on each and every crack that it would take me forever to get anywhere. I even have specific paths memorized, and will go out of my way a little bit if it makes an easier, smoother drive. (Unrelated to spring - cobblestones are THE WORST. Those, I will avoid at all costs. They are always the most bumpy, uncomfortable ride.)

I know this whole post is basically a long, extended rant about how bad sidewalks can be for people who use wheelchairs, but I think that's not the most important takeaway. When people think of accessibility, they think of ramps and elevators, maybe Braille or sign language. They don't tend to think of sidewalk conditions. But sidewalks actually affect my day-to-day life a lot! Accessibility touches on so many different things that you wouldn't necessarily think about - and unless you actually talk to, or listen to, someone with a disability, it's likely that you'll never realize it and nothing will ever change.