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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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Five Smiles #3

Before I jump in, I’d like to say thank you for all of the birthday wishes on my previous post. I’m still in denial that I’m actually 25, but I had a great birthday! I went out with some friends in Philly to celebrate on the 3rd, had a delicious gluten-free cake with my family at home on the 4th, and wrapped up the celebration visiting my Grandma and Uncle John in Massachusetts on the 5th. It’s safe to say 25 is off to a good start.

1) I had an abdominal surgery about a month ago and today was my follow-up with my doctor at Jefferson. He said that everything looked great! I’m only a month out from the surgery, but I’m incredibly happy with the results so far.

2) Do you remember when I wrote in a previous post that I thought my van would spontaneously combust one day? Well, I was right. I want to preface story this by saying that everyone is fine and after three days at the auto shop, the van is home, happy and healthy (at least for now). Anyway, my mom went into the Gap to buy a gift card and I decided to wait in the car. All of a sudden the car made a weird noise and white smoke started pouring out of the front of the car. I could feel a panic attack brewing. So, I followed my first instinct, called my mom and shouted: “Mom the car is on fire!” My mom sprinted out of the store, turned the car off and immediately got on the phone to the car mechanic. Long story short, we were stranded in the Gap shopping center for almost three hours as the car was towed and we waited for a wheelchair-accessible transport to take us home. It was a bit of an inconvenience for sure, but in the end, wasn’t so bad. We got açai bowls while we waited, had some nice conversation with the lovely people who drove us home, and the car problem ended up not being too serious. Phew.

3) Willow has been extra cute lately so here are some recent pictures of her enjoying summer. Dad brought her home this funny doormat from his work trip to Arizona. She loves trying to steal Dad’s fresh-picked veggies off the back porch. Green beans are her favorite. It’s crazy to think that she will be a year old next month. They grow up so fast!

4) My dad found a cute little brunch spot in Wilmington called the Bellefonte Cafe and we all went over the weekend. Despite the heat, it was nice to relax on the patio and be with everybody. My sisters are both going back to school next week so it’s going to get pretty quiet around my house.

5) I have another surgery tomorrow! This is the last one that is currently scheduled. I’m having a biceps-to-triceps tendon transfer on my left arm, which is my stronger arm. Basically, they just take a piece of your biceps and flip it into your triceps. After some occupational therapy, I’ll be able to push off of surfaces easier, reach overhead without my arm falling and smacking me in the face, etc. It’s a pretty routine surgery, but out of all the surgeries I’ve done so far this one is definitely giving me the most anxiety. The looming loss of independence for a couple months during recovery is nerve-wracking. However, I’ve talked to a lot of people who’ve had it done and they say the new strength you gain is absolutely worth it. So, here goes nothing!

Surgery Recovery, Uncategorized

Adios, cast!

On Wednesday, I had my six-week checkup at Shriners. The place was hopping; Dr. K had just gotten back from doing some mission work with kids in Ethiopia, so everyone was eager to see him — especially me! I couldn’t wait to get my cast off. I had been wondering, with a mixture of anxiety and excitement, what was going on under there and how my arm would look.

Dr. K and his orthopedic team started off by draining my leg — I’ll spare you those lovely details. Then they got to work removing my cast. I’ve never broken a bone or had any reason to be in a cast before, so I wasn’t sure what to expect. The saw they used was pretty cool. Even though it sounded terrifying and cut through the fiberglass cast with ease, the blade couldn’t cut you if it hit your skin. Medical gadgets are pretty amazing.

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The big reveal!

I was worried about it possibly being moldy and gross under the cast, but Dr. K said everything looked great and was headed in the right direction. The incisions are healing up nicely and the new flap on my triceps (where the new muscle and nerves are) appears healthy. Yay! Good news. My arm may not be the prettiest anymore — there are quite a few scars — but, oh well, it’s worth it. And it’s just nice to be able to see my arm again! Continue reading “Adios, cast!”

Surgery Recovery, Uncategorized

In the waiting

Today marks six weeks post-op. — high time for a mini update! Day by day, it feels like my recovery is dragging on slowly, but at the same time, I can’t believe it’s already been six weeks.  Since my arm and leg are still healing, I haven’t been able to do any PT or weight bearing of any kind on my arm. It’s felt weird not going to therapy. I miss my Magee family! It’s hard to feel like I’m losing some of the strength I had worked so hard to gain in PT. But I try to remind myself that sometimes you have to take a little step backward to move forward.

This time next week my cast will be off! Wednesday, April 24 is the day. The plan (that I know of) is for Dr. Kozin to remove the cast on my right arm and replace it with some sort of brace. I’m not sure what the restrictions will be with that yet — so stay tuned. There may or may not be any new triceps movement just yet. Like I’ve said before, nerves are lazy. They take a little while to wake up and introduce themselves to one anotherBut I’m feeling all kinds of tingles! I’m going to take that as a good sign. Dr. K is also going to drain my left leg next Wednesday. I have developed some excess fluid where they took the gracilis out. It’s nothing harmful, but better to get rid of.

Even though my recovery will be far from over — remember, I’m having part two of this surgery again in six months — I’m excited for this next step and my possibilities in the future. Continue reading “In the waiting”

Surgery Recovery, Uncategorized

Post-op. Update

Hello! I have a lot of updates since my last post. As you know, I had my long-awaited surgery on Thursday. I’m going to try my best to explain the surgery again. Dr. Scott Kozin from Shriners Philadelphia led a team of three surgeons. They took out the gracilis muscle, its nerves, and arteries/veins from my left leg, moved it all up into the triceps region of my right arm and attached it to the healthy supinator nerve, which runs down into my wrist. Obviously, it was more complicated than that, but we’ll stick with that. In a few months, when this all heals, I’ll be able to extend my arm (triceps) when I think about rolling my wrist over. Crazy. It will take some time to retrain my brain, for sure, but I’m up for the challenge. This is only the beginning of what Dr. Kozin plans to do. In about six months, I’ll have the surgery again, this time using my other gracilis muscle to give me biceps function.

I know this chapter in my journey is going to be hard, but it’s going to be worth it in the end. Having better arm function in my right arm is the first step in regaining some more of my independence! And I’m so ready for that.

This latest adventure started on Thursday morning. My parents and I hustled out the door to make our 6 a.m. arrival time. The team at Shriners was wide awake and ready to get started — definitely more caffeinated than I was. The first question they asked when I arrived at pre-op. was whether I wanted cupcakes, butterflies, or rainbows on my pillowcase. It’s funny being 24 at a children’s hospital! Those pillowcases are a sweet gesture to ease a kid’s nerves though — and it calmed mine a little, too. After some prep, I rolled into the operating room around 7:30 a.m. and drifted off to dream land. Anesthesia is some amazing stuff. I woke up around 5 p.m. in the ICU ward oblivious to all the amazing work that Dr. Kozin and his team had done the previous nine hours. Continue reading “Post-op. Update”

Surgery Recovery, Uncategorized

Onto my next adventure…

As I mentioned in my previous post, I’m getting surgery! It seems like I’ve been waiting forever for it to happen, but now that March 7 is only a week away, I’m starting to experience a whirlwind of emotions — I’m excited, nervous, anxious, and everything in between. Before I jump in and explain the surgery, let’s rewind and take this chapter in my journey from the top. I’ve covered a lot of hard miles to get to this point.

I’ve been dedicated to doing physical therapy for a year and a half now. I’ve seen some really good return in my left arm/hand/fingers and a bit in my left leg, but my right side is still very weak. Over the summer, I started feeling like I ‘plateaued’ in PT and in my recovery, but I was still determined to recover more function, especially in my right arm. A common misconception about people who are paralyzed is that they’re just trying to walk again. Of course, I would LOVE to walk my dog and run the Broad Street Run again someday. But honestly, I’d trade that any day to be able to put my hair in a ponytail, write with my dominant hand, and be independent again. Continue reading “Onto my next adventure…”

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Five Smiles #2

Monday: For the past couple of months, I’ve felt like I’m in a bit of a rut when it comes to working out. I’ve still been going to Magee to use the stim bike, Lokomat, and Exoskeleton in the Wellness Center, but I don’t have any formal OT or PT right now. After over a year, insurance finally said it’s time to take a break (I can go back in a few months though, no need to worry). I’ve been yearning for something new so that I didn’t lose interest in working out all together. Sometimes it’s hard to stay motivated when your body isn’t showing the results you want, but I know it’s important to keep moving. I recently joined a health and wellness center that’s about 15 minutes away from my house to do some aqua therapy. I was a little reluctant at first — I always hated swimming growing up — but so far, I really like it! The nurse who works there, Tia, used to be an aqua therapist, so she’s been working with me every week and always has new exercises and stretches for me to try out. My body feels a lot lighter and less rigid in the nice, 90-degree salt water. Since there’s less gravity, I can take baby steps with my left leg and pull my right leg along to ‘walk’ a little underwater with my upper body supported by noodles. It’s awesome! I’m not going to lie though, it’s a little awkward being the only person there with a spinal cord injury, but, hey, I have to get out of my comfort zone sometimes, I guess.

Tuesday: My surgery was moved up! Yep, I’m getting surgery. It was originally scheduled for March 20, but now it’s happening on March 7 — two weeks earlier! Lately, I’ve been feeling like I’m just waiting around for it, so I’m definitely happy the surgeons snagged me an earlier spot. This will be the first of two or three surgeries I’ll be having on my arms to increase my independence. And I sure am ready for that. *Spoiler alert*: my next few posts will be taking you through this journey with me, so stay tuned!

Continue reading “Five Smiles #2”

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Five Smiles #1

Monday: Today I finished reading an inspiring book called Laughing at My Nightmare. It’s written by a young man named Shane Burcaw who was born with Spinal Muscular Atrophy — a disease that causes his muscles to waste away over time. He’s been in a wheelchair his entire life, but his outlook on everything is amazingly positive and he doesn’t let his condition stand in the way of being happy and productive. He travels all over the country as a public speaker, runs a non-profit organization, a blog, and a YouTube channel. He’s definitely a busy guy! I highly recommend his book. He’s about to come out with a second one as well. On his blog, he writes these Weekly Smile posts. I like them so much that I decided to ‘steal’ the idea. Hopefully, he won’t mind. This may or may not actually become a weekly thing, but anyway, here goes!

Tuesday: I recently started volunteering at a non-profit just a few miles from my house. The Barn at Spring Brook Farm provides camps and after-school programs for kids with physical and cognitive disabilities. The Barn is loaded with cute farm animals that kids can connect with and learn from. I’ve been doing some writing and helping with advertising materials for them. They also gave me access to their WordPress, so I can update their website. It feels good to have some work responsibilities again and be part of such a special organization. Click here to read about some of the amazing work being done at the Barn. Continue reading “Five Smiles #1”

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Road Trip 2.0

In July, my mom, my Auntie Amy, and I loaded up our giant, red wheelchair van and drove all the way to Florida. Eleven hundred miles! I was going down for a week of therapy with an SCI guru named Ken Bryant (and a little fun, too). It was a long, hot drive, but totally worth it to relax on gorgeous Clearwater Beach and float in a pool a year after my SCI. (Check out the picture below of me in a super stylish beach wheelchair). In mid-October, my mom and I embarked on our second major road trip since I’ve been in a wheelchair. This time we went somewhere not quite as warm as we headed off to see my best friend, Erin, in Chicago!

Continue reading “Road Trip 2.0”

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Little victories.

Before my spinal cord injury, it never crossed my mind whether or not a place was wheelchair accessible. Why would it? It wasn’t something that affected my life (or hardly anyone I knew). But now that I’m in a wheelchair, I have to think about it all the time. Are there stairs to get in the place? Are the tables too low? Too high? Will I be in the way? Will someone have to help me get out of my chair? Every time I go somewhere new for the first time — the dentist, the hair salon, a doctor’s office, a restaurant — it’s an adventure. And sometimes it actually gives me a bit of anxiety. Continue reading “Little victories.”