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Colorado Hiking Chair Cont.

Hi everyone! I just wanted to hop on here and share a little update regarding the trackchair I tried out while visiting Denver. A reporter and a photographer from the Denver Post did a story about the trackchair program and used me in the story!

If you would like to give it a read, here is the link: https://theknow.denverpost.com/2021/06/15/track-chairs-limited-mobility-hike-staunton-state-park/260363/

~ Mary

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Road Trip 2021

Hello everyone! I hope you’re enjoying the start of summer. Mom and I are back from our cross-county road trip and, as promised, I have lots of beautiful pictures and fun stories to share. From the deserts of Arizona and New Mexico to the mountains of Colorado, we saw so much of the country and our trip was a much-needed post-quarantine getaway.

Our first official stop was Santa Fe, New Mexico and it took us about three days of driving to get there. We drove through Indiana, Missouri, Oklahoma, and the top of Texas. I have never been to any of those states before so the driving was actually very interesting. While passing through Missouri, we stopped at the St. Louis Gateway Arch park and took some pictures with the ‘Gateway to the West’. Sadly, we also saw many dead armadillos on the side of the road in Missouri. Poor little guys.

Surrounded by the rolling red and tan Zuni mountains, our drive through New Mexico was absolutely beautiful. In Santa Fe, we explored the shops in the plaza and the art galleries on Canyon Road. Canyon Road was a bit challenging to navigate in a wheelchair but other than that most everywhere was pleasingly accessible. I loved the laid-back, artsy vibe of the city and the unique architecture. We also made a stop at the New Mexico Museum of Art and at some delicious authentic Mexican restaurants.

Continuing our journey, we headed to Flagstaff, Arizona for a night. It was a very cute town that was, to my surprise, surrounded by the San Fransisco mountains. I had always pictured Arizona as a flat desert state, so the mountains were a nice bonus. The next day, we drove through the Coconino National Forest to get to Grand Canyon National Park. Luckily, I got an all-access pass that allows people with disabilities to drive their cars on roads designated only for shuttles. In the areas that weren’t very accessible for me to get out and explore, I essentially got my own private tour. It was amazing. The Grand Canyon was even bigger and more spectacular than I imagined. Pictures truly don’t do it it justice. One natural wonder of the world down, six to go!

Sedona, Arizona was our next destination. The drive on Highway 89 from Flagstaff to Sedona is actually rated one of the seven most scenic drives in the country. The drive took us through Oak Creek Canyon and had gorgeous, panoramic views of the mountains and red rocks. If you ever have the opportunity to take this drive, I highly recommend it! Beware though, the roads are extremely windy and scary at times. The entire town of Sedona is surrounded by towering red and pink rock formations that don’t even look real. We spent a few days there exploring all of the well-known red rock areas like Cathedral Rock and the Chapel of the Holy Cross. We also explored the town and some peaceful state parks with nicely paved trails and great views. I loved that there was no humidity in Arizona (good for the hair!) but man, oh man, was it hot.

Last but not least, we made our way through northern Arizona and Colorado to get to Denver. On the way, we made a stop at the Garden of the Gods in Colorado Springs to see the beautiful red rocks. One of the biggest highlights of my time in Colorado was trying out a hiking trackchair (pictured below) at Staunton State Park. They have an annual program where volunteers take people with disabilities hiking in these huge, all-terrain wheelchairs. It felt amazing getting back out on the trails and into nature for a few hours. All of the volunteers were extremely nice and helpful and made the experience really special. I will definitely be back! We also took a trip up to Rocky Mountain National Park and saw two moose within ten minutes of being there. So cute. The views of the snowcapped mountains were breathtaking. We drove up Trail Ridge Road until we were above the tree line and started to see warning signs. I must admit, I was freaking out a little bit driving up into the mountains but it was worth it for the views. Thank God for Mom’s A+ driving skills. We also made a pitstop at Dad’s favorite West Coast fast-food spot, In-N-Out Burger. Since I’m gluten-free, I got my burger ‘protein-style’ (wrapped in lettuce) and it hit the spot. I finally get what all the hype is about.

All in all, we drove about 5,400 miles roundtrip. Crazy, but it was worth it. We listened to countless podcasts and two audiobooks, The Wife Between Us and The Last Thing He Told Me, along the way. I have never been away from Willow for more than a couple of days, so she was super excited when we got home. Our road trip was a nice escape for a couple of weeks but sadly, every vacation must come to an end. Now that I am home, I am starting to participate in a clinical trial and OT at Jefferson that could be beneficial to my right arm. It’s very exciting stuff and I will keep you posted.

Thank you for reading!

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Happy Spring!

Hi, everyone!

I hope 2021 is going well for you so far and you’re staying Covid-free. Hopefully, now that the vaccine rollout has really taken off, we can get back to normal — whatever ‘normal’ even is anymore — very soon. It’s going to feel a little weird when we can officially ditch the masks, but I actually don’t mind them very much. Hear me out: Masks double as nose-warmers in the winter, and you only need to put makeup on the top half of your face. Not so bad, right?

I’ve definitely been slacking on the blog lately, I know. I’ve been meaning to write an update for a while now, but life keeps getting in the way. I finished a couple of classes back at Temple and have started taking driving lessons at Moss Rehab. Being on the road again gives me a rush of excitement, anxiety, hope, and fear — all at the same time. So far, no cars, trees, humans, or animals have been harmed. Phew. I’m still pretty early in the driving process and I’m not entirely sure where it’s going to go yet, but I’ll keep you posted.

Before the Oscars a few weeks ago, my family and I binge-watched some of the nominated movies. I highly recommend Crip Camp, a documentary on Netflix. It’s all about the disability- rights movement, from its start at a summer camp years ago until now. Obviously I could really relate to it. I loved it. It will make you laugh and cry, and it will open your eyes to this important piece of history. Although it didn’t win an Oscar, the film has had a huge impact on the disabled community that can’t be measured by a shiny trophy.

Here is a great photo of the Crip Camp production team on the red carpet on Oscar night. Judy Heumann, a disability-rights activist and author of the book Being Heumann is pictured on the left. This picture is compliments of her Instagram. Even an adorable service dog made it to the Oscars!

The inclusivity we need to see!

I’m super happy that the weather is starting to warm up. I’ve never liked the cold, but nowadays it really affects my body and my mood even more. Speaking of warm weather, my mom and I are taking a road trip out West in just a couple of weeks. We’ll be heading out to Santa Fe, New Mexico and Sedona, Arizona and making overnight stops along the way. My goal is to blog throughout our trip, so get ready for more updates from me and, hopefully, some beautiful photos. Fingers crossed we won’t get on each other’s nerves too much, but I make no promises. Stay tuned!

Until then, thanks for reading!

Mary

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2020 Ramblings

Happy holidays, everyone! I hope you all are staying warm and most importantly, healthy. Can you believe we’re just a few short weeks away from Christmas? Is it just me or does it feel like 2020 flew by? I’m not mad about it, though. Bring on 2021. We’re all so ready for it.

The holidays are certainly looking different this year. We typically either travel up to Rhode Island and Massachusetts to see family or they come down here, but for obvious reasons our family get togethers are postponed for now. Better to be safe than sorry, right? Maybe that means we can have a Thanksgiving/Christmas 2.0 Celebration in July when the weather is nice and the vaccine is ready. That sounds ideal to me.

My friends and I have a similar mindset regarding our birthdays this year as well. We all turned 26 within the past few months, but have decided that 2020 doesn’t count. So really, we’re 25 pt. 2! Speaking of, having my old high school buddies around has been a silver lining of the pandemic. Some of them have moved back home for a while during COVID and it’s been nice all having the chance to slow down and reconnect — even if from six feet apart sometimes.

2020 has been a crazy, different, and scary year for everyone. For me, it’s felt very confusing and frustrating and I know I’m not alone in this. I felt as though my life was pretty much ‘on hold’ for half of 2017, and most of 2018 and 2019 as well as I rehabbed and recovered from multiple surgeries. Then, right when I was starting to feel strong and somewhat like myself again a pandemic hit … forcing me (and everyone else) to hit the pause button yet again. For the disability community and higher-risk individuals, it’s been an especially isolating year. I’m constantly asking myself: Am I being too cautious? Not cautious enough? Ugh.

Hopefully, things will start to turn around in the new year and the constant uncertainty and anxiety will go away. Obviously, things won’t miraculously go back to ‘normal’ when the ball drops to ring in 2021. There will still be dark months ahead and hard work to be done. We will have a vaccine soon, though, and a new leader soon as well. A leader that believes in science and doctors and cares about people of all races, sexualities, abilities (!!!), etc. There are things to look forward to on the horizon. I have to stop and remind myself of this often.

Wishing you all a healthy, happy holiday season and a great start to 2021! Thank you for reading.

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Walk for Love 5k Fundraiser

Hi family and friends! If you’re looking for a way to give back to the community then look no further! Dr. Scott Kozin, my wonderful OT’s, and all of the folks at Shriners have been an amazing blessing to me and to children from all over the world. It is truly a special place and they never turn a patient away, regardless of their ability to pay.

Over the past year and a half, I have undergone three surgeries at Shriners. During my many months of rehab there, I met children with disabilities and their families who traveled to Shriners for specialized care from Croatia, Honduras, Belize, Newfoundland, and all over the country. I was very lucky to live nearby and that they opened their doors to me even though I was an overage patient.

Please consider a small donation as I roll to support them in their annual Walk for Love 5k fundraiser on Saturday, October 3, at the Philadelphia Zoo. To make a donation, please click HERE or search ‘Salisbury Squad’ to sponsor my team. If you are in town, feel free to register with our team and join us! Don’t forget a mask!

Thank you, everyone, for your continued support and love. Your donations mean a lot to me!

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Three years of SCI

7/10/17 —  Today marks three years since my life was changed forever. Three years since I felt the ground beneath my feet, signed a paper with my dominant hand, or hopped out of bed without thinking twice. It has felt like an entire lifetime, yet it has gone by in the blink of an eye. I have so many mixed emotions.

 

Three years ago today I suffered a major stroke in my spinal cord. What started as a completely normal day — going to work, coming home and watching The Bachelor with my roommates — became my last ‘normal’ day. I’m not one to vent on social media or on my blog very often but I’m not going to lie, every day is still a challenge. Not a day goes by where I don’t miss my body and my life before my spinal cord injury. I try my hardest to be positive and stay strong, but it’s not always easy.

 

It’s been a crazy few years, to say the least. I’ve spent three-plus months in the hospital, had three major surgeries, multiple other procedures, and endured months of post-surgery restrictions and recovery. I’ve also spent countless hours in physical therapy and occupational therapy working on my body to keep it strong and regain as much independence as I can.

I often get frustrated with the function I’ve recovered. If you asked me three years ago where I’d be today I’d probably say walking and living my normal life. But that was before I truly understood everything about spinal cord injuries. So sometimes it helps when I go back and look at pictures and videos of my early SCI days and remind myself that I actually have made progress! I’m finding little bits of new independence all the time and I’m excited about continuing to meet my goals.  I’m even hoping to learn how to drive again in the near future. The pandemic has that on hold right now, but once there’s a vaccine, I’m hitting the road! I was never a great driver even before my injury, so watch out.

I read a statistic recently that said ‘people with disabilities are the nation’s largest minority group and the only one that any person can join at any time.’ It really struck me. Life can change for anyone without a warning in an instant, just like mine did. So, run all the miles you can, hug your friends and family every day, travel whenever possible, and never take things for granted. Try not to stress too much about classes, work, friend drama, or looking perfect all the time like I did. All of that is so insignificant.

 

Even though I still have bad days, I’m thankful to be alive whether it’s walking or rolling. I’m blessed to be surrounded by wonderful, supportive friends and family. Thank you to everyone who has stuck by my side (and peeked in on this blog) these last few years. You’ve helped me discover who is truly in my corner and what’s important in life.

So, here’s to rolling through life for three years and many more to come. Thanks for being a part of my journey.

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Another day in ‘the Q’

I can’t believe it’s almost officially Spring and we’re still in ‘the Q,’ as people are calling this strange time in history. Governor Wolf recently extended the stay-at-home order until June 4. That being said, I hope everyone is staying healthy and somewhat sane.

There’s officially another Temple grad in our home! Caroline graduated with a degree in psychology and a minor in neuroscience last Thursday. Of course, her commencement ceremony couldn’t be held in-person with all the craziness of the pandemic right now. We made the best of it, though, and had a little at-home celebration instead. Her psychology professors held a nice virtual ceremony. We Zoomed with family and drank sangria while we listened to speeches and waited for her name to flash across the screen. The dogs loved being invited to graduation this year! They’re not minding this whole stay-at-home thing one bit.

It’s crazy to think that I graduated three years ago now! Time really does fly. Here’s a picture of Caroline and Willow having a graduation photoshoot and a throwback picture of my friends and me on the TU big chairs.

Last week was Mom’s birthday and Mother’s Day as well! It’s safe to say we had a busy week celebrating around the house. Birthdays and holidays seem a little anti-climactic in quarantine, but that just means we can redo them once it’s safe enough to venture out into public again. Two days out of the year isn’t enough time to show our love and appreciation for you, Mom. Thank you for supporting me every day and helping me put my life back together, piece by piece. You’re the best.

There’s certainly been a lot more downtime during quarantine. In some ways, it’s been nice, but I know I’m not the only one starting to go a little stir crazy. Reading has been one of the things getting me through the many weekends cooped up at home instead of seeing friends. I’ve never been big on fiction, but it’s kind of nice to sometimes escape reality for a little while. I’m about to finish Quarantine Book #7. Some of the books I’ve read and would recommend are Little Fires Everywhere, Nothing to See Here, Verity, and In Five Years. Give ’em a try!

Another new development: I applied to grad school! Ahhhh. Temple’s Master of Science in Communication Management program begins in the fall. Fingers crossed I get in! I’ll keep you posted.

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Quarantine vibes

Happy Quarantine, everyone! I hope you all are staying safe, healthy, and sane during this crazy/scary/boring time.

For me, quarantine ‘officially’ began a little over two weeks ago. With the rapidly spreading virus, we decided it would be best to take a break from PT and OT until things calm down. Due to my SCI, I’m considered a higher risk. I don’t necessarily have a higher chance of getting sick, but if I did it might be harder for me to recover.  My injury affected my core and chest muscles, so my little baby coughs are pretty weak. I haven’t been sick since my SCI (knock on wood) and I definitely don’t want to start with the coronavirus!

On a lighter note, the dogs are loving the quarantine. With everyone home, they’re definitely getting more treats, cuddles, and walks than they would on a normal day. They are totally unaware of the scary things going on in the world right now. It must be nice to be a dog. I was looking through old photos the other day and came across a picture of Hazel, our 12-year-old yellow lab, when she was just a puppy.  So cute!

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I look funny….but at least Hazel’s cute

Since this time of year is typically the start of the baseball season, I expected the house to be quiet with just my mom and me, but it’s nice to have everyone around. Caroline has been putting her ‘therapy aid skills’ to good use helping me do some PT at home. She’s also been baking a lot — rolls, gluten-free cornbread, cake, cookies, homemade dumplings– trying to make us all gain the coronavirus 15.

Of course, quarantine is the perfect time to chill and binge-watch Netflix. Some recent shows we’ve been loving are season three of Ozark (Netflix) and Little Fires Everywhere (Hulu). We’ve also been doing some painting to pass the time. I was never very artistic before my SCI (and I’m still not now) but here are some of my recent left-handed doodles.  Mom also single-handedly completed a 1,000-piece puzzle, which you can see in the background of this photo. Way to go, Mom!

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Hopefully, within the next few weeks or months, the coronavirus will subside and life will go back to normal. I’m definitely used to staying home and laying low more now than I was before my injury, so this whole social distancing thing isn’t super new to me. I’m still itching to go out and see friends, but I guess Zoom and FaceTime will do for now.

It’s important to stay informed about everything going on, but remember it’s OK to take a break from the news and social media as well. Stay safe, healthy and…home! We will get through this together.

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Chef Mary

Hello there! Welcome to Mary’s Cafe. Our specialties include macaroni and cheese, cauliflower crust pizza, and waffles with fried eggs. Take a seat and enjoy!

Before my injury, I loved to cook. I was always looking up new gluten-free recipes on Pinterest and trying them out. Since my SCI, I haven’t done much in the way of cooking. I typically find the recipes then direct Mom how to cook them.  I thought cooking would be pretty much impossible with only one hand. Turns out I was wrong!

When I was at Shriners rehabbing after my tendon transfer, my OTs, Justine and Sarah, had me in the kitchen chopping veggies and baking cookies to strengthen my arm back up. My kitchen creations there inspired me to try cooking at home, too. They gave me a rocker knife and helped me find a single-handed cutting board, pictured below. I highly recommend both of these products for amputees or anyone with paralysis in one arm/hand.  

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For the past several weeks, I’ve been participating in a coaching study with two OT Doctoral students at Jefferson, Bernadette and Taylor. The gist of the study is that I set a handful of feasible goals and the students check in with me every week to see my progress. So far, it’s been a great experience!

One of my goals has been to continue gaining independence in the kitchen and since our kitchen is not very wheelchair-friendly right now — hence the dent in the fridge — we made my own little kitchen! I feel like I’m back in my Temple dorm room circa 2013 with a mini-fridge and toaster oven right in my bedroom. My menu is not very extensive yet, but I’ve independently cooked myself breakfast and lunch several times so far. Trader Joe’s gluten-free macaroni and cheese is my current go-to. Yum. 

It feels good to be taking little steps toward more independence like making some of my own meals. My next step is to add a Keurig to my makeshift kitchen so I can make coffee or tea whenever a craving hits. I always need that 2 pm caffeine boost. If you ever need one, stop by my cafe and I’ll whip you up something nice.

As always, thanks for reading. Talk soon.

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Sweet Dreams

In my dreams, I walk. Literally and figuratively.

A couple of weeks ago, I had a dream so vivid and funny that I just have to share. I was in the King of Prussia Mall (it was unclear who I was with) and I was able to walk, but only if I was pushing a Swiffer mop. Some people use walkers. Some people use canes. But I, apparently, use a Swiffer. Totally a normal thing to be walking around a mall with, right?

Now, it’s not uncommon for me to walk in my dreams. Actually, it’s uncommon for me to be in a wheelchair in them. Usually, I’m able to walk, not perfectly, but I am able to walk, sometimes with a little help. The Swiffer (Mom’s favorite cleaning tool) is a new twist though.

I’m not sure what my sleeping mind was trying to tell me … maybe I miss cleaning? Nah, can’t be that. Anyway, I thought you might get a kick out of my silly dream. I know I did.

In other news, I am finally back doing some physical therapy at Magee! I can’t believe it’s been over a year since I did any formal physical therapy there. I had to be really careful with my arms during my surgery recoveries, so I couldn’t do any PT, just OT with my friends at Shriners. I had an evaluation at Magee last week and will be going twice a week for the next couple of months. I’m looking forward to being more active, getting stronger again, and seeing some of my old Magee friends.

That’s all for now! I hope 2020 is treating everyone well so far.

Sweet dreams!

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Thanks for the help, Swiffer.