Extraordinary, On Wheels!

Hi, my name is Jacob. I was diagnosed with Duchenne Muscular Dystrophy (DMD) at the age of 2, but it does not define me. I created this blog to document the extraordinary and adventurous life of living with a physical disability. To receive post updates, please follow @EOWheels on Twitter or download the Tumblr app and follow Extraordinary, On Wheels above. 

[extraordinaryonwheels]

About Extraordinary, On Wheels! See below for new posts...

PINNED: New posts are below. My name is Jacob and I have a condition known as Duchenne Muscular Dystrophy (DMD). As a result of DMD, my muscles are missing a vital protein called dystrophin, which essentially preserves and strengthens muscles, causing my muscles to atrophy over time. I have a twin brother named Ryan, who also has DMD. I am currently a member of the Parent Project Muscular Dystrophy (PPMD) Adult Advisory Committee (PAAC) and have a certificate in Health Information Technology. In my free time, I enjoy listening to music, researching various topics, spending time outdoors, watching various YouTube channels such as Squirmy & Grubs (check it out, they’re incredibly amusing), and hanging out with friends. Life is a rollercoaster, but I strive to make the best of it and live each day as if it’s my last! 

Extraordinary, On Wheels is about the extraordinary and adventurous life of living with a physical disability.

“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.” - Maya Angelou

To receive post updates, please follow @EOWheels on Twitter or download the Tumblr app and follow Extraordinary, On Wheels above. 

[extraordinaryonwheels]

You Can’t Put a Price on the Human Touch

Throughout human existence, we have all had the desire for social connection. Some researchers, like Abraham Maslow, even classify it as a basic need for survival. Whether it is a need is up for debate. After all, we won’t die without connection. What I do know is our connections make the human experience better.

Connections are important to me, and in some ways I wouldn’t be the person I am today without them. Friends have been there through sunny skies and stormy weather. We’ve had crazy escapades and they’ve given the gift of wisdom. They’re even bad influences… I’m looking at you, Duffy!

I may look like I’ve always got it all together, but the reality is I don’t. And this is something we all share in some way. The beauty of true connection is that they accept us for who we are. They overlook our flaws. They don’t care about our bad days.

If you haven’t found true connection yet, keep looking… Don’t settle. As Steve Jobs said, “You’ll know when you find it. And… it just gets better and better as the years roll on.”

I don’t want to say that my friendships have been perfect. We have our differences, but the important thing is we always find a way forward.

These connections are real people, not an idea. They are people who choose to stay or come back into your life, despite struggles.

Michael, Duffy, Nick, Brad, and the new guy Mark, I know it’s hard to get together as new fathers, but I value the times we get together. Nick, you’ve been on the road for months and still made it to the last guys’ night. That mattered.

Emma, you’re navigating a tough transition in life, and I’m happy I can be there for you. I value the connection we have.

Brad, you’re entering a new chapter with the move to Texas. It’s a big change, and I’m still here. This doesn’t have to be the end! iykyk

To my old friendships and developing connections, I am grateful for you! I wish I could name all of you, but it would crash my blog…

As The Jonas Brothers say, you can’t put a price on the human touch.

[extraordinaryonwheels]

Live Like There's No Tomorrow

I’ve always known I might not grow old.

As World Duchenne Awareness Month comes to an end, I want to share something personal. Most of my life, I have faced the reality that I may not live as long as those reading this. I’ve accepted that I need to condense my entire life into a shorter time. From day one, I’ve learned to live my life with urgency and act with intention with every decision.

Urgency comes in many forms. For me, I act on my ideas while others sit in the metaphorical waiting room. I say yes early. I take emotional risks. I see opportunity where others see risk.

Some view my drive as neediness or desperation, but the reality is if I don’t act I may never get the opportunity.

Recently, I sent a bold message to this girl. She has an electrifying personality and the cutest smile. I sat at my desk, my palms were sweaty, knees weak, arms were heavy, my heart was pounding…what if I scare her off? what if it results in silence again? But what if it turns into something meaningful? I knew if didn’t press send I would regret it every time her smile crosses my mind. I would regret not getting to know her as a person. I pressed send, and in that moment I finally felt free. Will we meet? I think so. I can sleep easy knowing I RISKED IT ALL.

Despite what people say, you can build Rome in a day. Don’t live with the dogma that you can’t.

Live like there’s no tomorrow, because for some tomorrow may never come.

You think you have time. You don’t. CALL. The person on your mind. SCHEDULE. The date you’re avoiding. START. The thing you keep putting off. SPEAK. Before it’s too late.

And to my friend Adam, I hear your fear about expressing your feelings to that girl you like, but you’ve got a real chance. Go get her!

[extraordinaryonwheels]

Do Dreams Predict the Future? The Beach—Gym Timewarp✌️

Ever since I was a child, I’ve wondered; what is the meaning of dreams? I recently read an article that shed light on this out of this world phenomenon. Scientists believe dreams might predict the future. A huge revelation if true.

The other night, I met someone in my dream who I thought I had never seen before. She wore a pink sweatshirt and joggers. Her strawberry blonde hair was curled, her cheeks were rosy, and her sapphire blue eyes were impossible to forget. We were with a group of friends in a warm place, Hawaii or LA, surrounded by a beach and palm trees.

When I awoke, I wrote it off as another dream. Still, I remember thinking, I want to meet that girl. Later that day. I got a notification. Someone posted a story for the first time in a while. I had this unusual urge to open it. There she was, it was her flashing a peace sign. This time it wasn’t at a beach but at a gym in Columbus.

When I saw her story, something else clicked. We both notice patterns in numbers. For her, it’s small details… 222 in her IG name, and posting her running watch at 10.10 miles. For me, it’s catching the same numbers over and over on clocks, receipts, or random places. Maybe they’re coincidences, but they feel like goal posts. Maybe dreams work in the same way, markers that tell us to pay attention.

What does this mean? I don’t know. If dreams can predict the future, why did the setting vary so much from reality? In my case, maybe dreams don’t account for things out of our control, like my physical disability. I can walk in them, which doesn’t align with my reality.

I often ask myself, what would life be like if I could experience the adventures and connections from my dreams in real life?

The world will never know the true meaning of dreams! Or maybe, one day, we will ✌️

[extraordinaryonwheels]

It’s Not a Matter of if But When

I have let someone go, and while it was difficult, I’ve realized that there are so many other girls in this world who want me for who I am—girls who want a man who’s handsome, kind, and charismatic, like me, quirks and all… A true gentleman. I’m confident that the love of my life will find her way into my life when the time is right.

The love of my life will not only have a beautiful smile but also be smart. She will have a touch of humor and a bit of elegance. She will have a lively personality and be kind and caring. We may not know each other yet, but I know we will meet soon. I have waited for this moment for so long, and I am READY. I’m ready to see the electricity in her eyes the moment we meet.

We may not know each other yet, but whoever you are, wherever you are, ily.

I used to fear the thought that I may never meet the love of my life. The most painful thing is hearing about someone with a shortened life who never had the chance to raise a family, let alone meet the one. When these thoughts come up, I’ve learned that the best thing to do is keep a positive mindset. A positive mindset is the most important tool to achieve anything in life, whether that’s love, friendships, or success. A chronically negative mindset only creates unnecessary noise, hindering your pursuits.

The future is bright!

[extraordinaryonwheels]

Where the hell has Jacob been?

Kicking ass as the next 007 on a secret spy mission? Soaking up the sun in a tropical paradise? Skydiving out of planes? That all sounds epic but I’ve been working toward much bigger goals, like becoming the next Richard Branson and improving humanity.

My top three priorities in life are to improve the world where I can make a difference, do fun stuff including jumping out of planes, and find “the one.” I mean, what’s better than finding someone who will shove a helpless guy out of a plane? (I don’t know, maybe endless nachos with that Mexican cheese sauce 🫕😍)

If you know me, you know I’m a persistent person and never stop until I’m successful. It’s easy to lose your drive with each failure but I see them as keys success and they push me that much harder. Just a word of advice - don’t be too persistent with love, that never ends well!

I’m the founder of SHRx24, where we’re becoming a leader in change by expanding our business portfolio into sectors that promise not just economic growth, but also improvements to human life. We see a future where our efforts in developing industries contribute to breakthroughs in health, sustainability, and technology. SHRx24 envisions leading a global movement towards a more inclusive and improved humanity, where every initiative we undertake is a step closer to solving the world’s most pressing challenges.

SHRx24 resembles Sand Hill Road Exit 24, a major artery in the innovation hub of the US, Silicon Valley, California.

Be persistent. I’ll catch you on the flippity flip!

[extraordinaryonwheels]

Risk Taking

I will start this off by saying, life is short! I came to this realization long ago due to my shortened life expectancy. Specifically, while hospitalized with a dreadful virus that almost killed me during my freshman year of high school, I had this epiphany that tomorrow is never promised. This close call and a few others have molded me into the person I am today who isn’t afraid to take risks, risks that have the potential to result in a positive outcome! 

This epiphany was even more striking during another traumatic close call in 2017, specifically during a wheelchair accident that almost killed me due to a motor malfunction that caused me to fall off a ramp. At the time, because I couldn’t breathe and wasn’t sure I would make it out of this, I thought of all of the things that I hadn’t yet accomplished and all of the things I looked forward to. Thankfully I made it through that and am still here to see and experience the many more extraordinary things that life has to offer!

I’m writing to say that you shouldn’t be afraid to take risks as tomorrow is never promised! 

If you’ve been thinking about proposing to your partner but haven’t done it because you fear the prospect of rejection, go for it, and the answer just might be yes! If they’re the one, the answer will be yes.

If you’ve been contemplating telling the person you’ve been dating that you love them but haven’t yet, just go for it when you have the chance! You just might warm their heart and make them smile, so let it be known and don’t hold back, and you’ll be happy you told them.

If you’ve been thinking about starting a business but are afraid of the prospect that it could fail, go for it, and you just might become the next billionaire!

If Jeff Bezos had not taken the risk of quitting his hedge fund job and moving across the country to start Amazon, he would not be one of the world’s wealthiest people today! He took this risk, and it was a success.

If you’re interested in joining the Olympics for that sport with which you’re extraordinarily talented but haven’t pushed yourself toward this because it seems far-fetched, if there’s a window of opportunity, go for it. You just might become one of the top Olympians in the world!

While the prospect of failure is possible and a natural part of life, there’s always a chance you just might succeed, so I believe everyone should take positive risks when there’s a golden opportunity. Life is short, so get out there, take risks that have the potential to result in a positive outcome, and take on the world!

You only live once, so live each day like it’s your last!

[extraordinaryonwheels]

Cashier-less Amazon Go Store Outsmarted by Robot

For those who don’t know, I have a JACO Robotic Arm mounted to my wheelchair, which is an extraordinary piece of modern technology that gives me necessary independence that I haven’t had for so long, such as shopping independently, for example, which leads to the primary part of my story. While visiting Seattle, WA, in late 2019, I visited the cashier-less Amazon Go store with the highly advanced “Just Walk Out” technology, which is near Amazon’s Day One headquarters, and decided to test the system against my robotic arm. The technology essentially allows a shopper to walk in, grab what they need, and simply walk out, automatically charging the shopper without physically checking out, as would be necessary in a traditional store. I hypothesized that the technology would not detect my robotic arm and any items I pick up, given that it’s not attached to my body.

After checking in, I proceeded into the store with my 🦾 at the ready, grabbed a bottle of smartwater (after accidentally shattering a nearby glass bottle, sending glass flying), and left the store. Following this, there was no charge for the smartwater, proving my hypothesis.

I tried contacting Jeff Bezos, the founder and former CEO of Amazon, and Amazon Go executive leadership regarding the flaw in the system, but I was unfortunately unsuccessful. I hoped to meet with Jeff Bezos and Amazon Go engineers to discuss my finding and get a behind-the-scenes look explaining why this happened.

*To be clear, I was authorized to test my hypothesis by an Amazon employee giving me a tour of the campus.

[extraordinaryonwheels]

Dating with a Physical Disability - Algorithmic Dating App Bias

Dating can be difficult for anyone, but more so if you have a physical disability, like me, as a result of disability stigma within society. Some of our population may inaccurately believe that people with disabilities aren’t capable of love or being in a relationship or aren’t able to play an active role in society.

As a result of this, algorithmic dating apps often aren’t very effective in my experience unless you pay to boost your profile and present a disadvantage for users with a visible disability. Many algorithmic dating apps give each user a score, which is determined based on a variety of factors, such as the number of likes or dislikes a user gets, for example, among other factors. Calculating scores based on the number of likes or dislikes can result in unintentional hidden bias within these systems as of result of disability stigma within society. A visible disability, because of stigma can result in fewer likes on these platforms, resulting in a dwindling score, which results in reduced visibility to other users.

One way to solve this, in my opinion, would be for algorithmic dating apps to implement a process where users with visible disabilities could submit a request for a score increase to counter the hidden bias. To prevent potential abuse of this feature by non-disabled users, users would need to privately describe their visible disability with their request. Following approval by one of the dating app employees, the user's score will be increased and remain at an increased level, which will result in increased visibility for the user equivalent to users without a visible disability.

*This post reflects my opinions and personal experiences and is not directed at any individual company.

[extraordinaryonwheels]

The Light at the End of the Tunnel

The past year has been difficult with the raging COVID-19 pandemic, but thanks to lifesaving researchers and clinical trial participants we now have highly effective vaccines that will save lives and help bring us out of this pandemic. As each day passes and more people get vaccinated, we will be getting closer to the light at the end of the tunnel.

It’s important to keep in mind that vaccines are the key to getting back to pre-pandemic normalcy, but this will simply not be possible unless a majority of the population has been vaccinated to reach herd immunity. If you haven’t already, please follow in your neighbors’ footsteps and get vaccinated as soon as possible for the good of society. The world is counting on you!

Your vaccination will not only protect you but will also protect others who simply can’t get vaccinated. Here’s some information from vaccines.gov regarding herd immunity:

Community immunity [herd immunity] protects everyone. But it’s especially important because some people can’t get vaccinated for certain diseases — such as people with some serious allergies and those with weakened or failing immune systems (like people who have cancer, HIV/AIDS, type 1 diabetes, or other health conditions). Community immunity is also important for the very small group of people who don’t have a strong immune response from vaccines.

https://www.vaccines.gov/basics/work/protection

If you have any concerns about any of the vaccines on the market, please discuss those concerns with your doctor. I also recommend watching the following YouTube video from the U.S. Department of Health and Human Services:

COVID-19 Vaccines: How Do We Know They Are Safe? | April 2, 2021 https://youtu.be/7bBmQaX2k4w

[extraordinaryonwheels]

Airplane Accessibility

Airplanes are not as accessible as you may think, which makes it surprisingly difficult to fly for people who use wheelchairs like me. Despite living in the technologically advanced 21st century, people who use wheelchairs cannot fly while sitting in their wheelchairs, so flying is a much more involved process. When flying I must be transferred out of my wheelchair into an uncomfortable aisle chair to board the plane and get to my seat, in which I then have to be transferred to my seat. Transferring so much can be extremely tiring. After transferring, the baggage handlers take my wheelchair down to the tarmac to be loaded into the cargo hold, where it will remain for the duration of the flight. After I have boarded, the other passengers begin boarding and the flight begins. After arriving at the destination, the process must be completed in reverse. Flying is extremely uncomfortable for me since I cannot fly in my wheelchair which has specialized seating that is fitted for me. Many airplane seats only have a small amount of recline compared to my wheelchair and lack other power seating functions that my wheelchair has. Without these necessary seating functions, the risk of a pressure sore increases.

The first time I flew, my wheelchair suffered minor damage at some point likely during loading or unloading, or the flight. The speed switch was snapped off my joystick and a few other parts on my wheelchair were damaged. Luckily, the damage wasn’t severe, but I was stuck at a slow speed for part of the trip until we figured out a workaround to turn the speed up with the broken switch. The switch could not be reattached though, and it required an expensive joystick replacement after the trip, which, along with the repairs of the other damage, the airline covered after filing a claim.

Hopefully, in the near future, airplanes will be wheelchair accessible like many other forms of public transportation so people who use wheelchairs can fly in their wheelchairs.

[extraordinaryonwheels]

A new blog post should be up next week!

Stay tuned...

[extraordinaryonwheels]

Part 2: Murphy’s Law, Disastrous Disney World Trek

Following the disaster, we dozed off in the motel room, which smelled like the ocean, and in the blink of an eye, the sun came up, and it was time to begin day three of our eventful journey. What could happen next? We departed the motel with one state to go and a three-hour drive. Hours later, we crossed the Florida Georgia line and made a pit stop at the Florida Welcome Center for complimentary freshly squeezed Florida orange juice. Sadly, the 71-year tradition of complimentary Florida OJ has come to an end recently. Many visitors, including me, are unhappy, but it’s impossible to make an omelet without breaking eggs. Onward! We left the welcome center after enjoying the most refreshing OJ. We’re now on the home stretch! After driving for millions of miles across six states and through the vast expanse of palm trees along Interstate 95, we finally arrived at our destination, Walt Disney World, and breathed a sigh of relief! We checked into our hotel and went to our room to take a siesta after our arduous expedition.

We enjoyed our time at the resort, but mid-way through our stay while enjoying the park, I suffered from heat exhaustion, which threw a monkey wrench into the trip. The 13-hour trip home went surprisingly well without complication!

Stay tuned... For context, Murphy’s Law is “a supposed law of nature … to the effect that anything that can go wrong will go wrong,” according to Oxford.

[extraordinaryonwheels]

Brief Intermission

I’ll be back with a new blog post soon. I am recovering from a surgery I had last week, so stay tuned!

[extraordinaryonwheels]

Part 1: Murphy’s Law, Disastrous Disney World Trek

In early 2017, my mom, my brother Ryan, and I began a weeklong adventure to Walt Disney World in Orlando, Florida, to attend the Business Professionals of America conference. To avoid the nuisance of flying, we decided to take the seemingly million-mile drive to Florida. We began our adventure three days in advance as a buffer, in the event hell broke loose and delayed our arrival. It was 4 PM on the day of departure, and we began our fateful journey through seven states. After driving for five hours, we were on our last leg, so we stopped at a hotel in Virginia to get some rest. A split-second later, we opened our eyes and were blinded by the bright sunlight shining through the window. It was time to begin day two of our seemingly endless and tiring 🥱 journey after eating breakfast at the hotel. 

Lunch eventually rolled around, and we stopped at Bojangles’, a restaurant chain in the southern U.S, and then we were back on the road. As a side-note, the food was not great. After driving for a while, we had to make a pit-stop for a quick car repair, which was a headache. After waiting for ten years, the repair was finally complete, which was a sigh of relief. We stopped for a flavorful meal at McDonald’s and then continued our arduous journey. Hours later, night fell, and we were driving through Brunswick, Georgia, where my brother Ryan felt like he was going to pass out. We pulled over, called an ambulance, and while waiting for the ambulance it turned out his sugar, or blood glucose, was low. The technical term is hypoglycemia. He ate something sweet in hopes of raising his glucose. The ambulance eventually arrived, and the EMT’s checked his status. The sweet snack did the trick, and, upon re-testing his glucose, his glucose was back to normal. This was a good sign, so the EMT’s allowed us to continue on our journey. Ten minutes later, Ryan began feeling like he was going to pass out again, and surprisingly his sugar was low again. He ate another snack to bring his sugar up.

Since it happened again, we decided to go to a nearby hospital. We waited at the hospital to make sure he was okay, which seemed like waiting an eternity. After a month of Sundays, Ryan was treated and eventually released from the ED. Onward... It was now 2 AM, so we decided to search for a hotel to get some shut-eye. After calling every nearby hotel, we could only secure a room at the five star Motel 6 as many of the other hotels were booked up. To be continued... 

Stay tuned for Part 2: Murphy’s Law, Disastrous Disney World Trek. For context, Murphy’s Law is “a supposed law of nature ... to the effect that anything that can go wrong will go wrong,” courtesy of Oxford.

[extraordinaryonwheels]

A new blog post, Disastrous DisneyWorld Trek, should be up on Friday! Stay tuned...

Update: I apologize for the delay in posting! This post will be up on Saturday.

[extraordinaryonwheels]

Columbus, OH Movie Theater Trek!

On a brisk November evening in 2016, a friend, Michael, and I decided to go see a movie while my brother was in the hospital in Columbus, OH, which is one of the largest cities in the United States. To get to the theater, AMC Lennox Town Center, I made the courageous decision to take the COTA bus from Nationwide Children’s Hospital, a million miles across town, or 6 miles, requiring two bus transfers. With hours to spare, I made my way from the hospital to the bus stop on Livingston Avenue to wait for the first bus. Eventually, Christmas rolled around, and the bus arrived. I waited for the ramp to deploy before boarding, maneuvered to the wheelchair seating area, and waited for the driver to secure my chair. We eventually departed to drive to the next stop, Ohio Statehouse, in the middle of downtown Columbus. I arrived at Capitol Square in the blink of an eye and transferred to the next bus for the second leg of the journey. The next stop was The Marketplace on Neil on Neil and 10th Ave. in the heart of The Ohio State University campus. After stopping at a million bus stops, I finally arrived in the University District to wait for the next bus to AMC Lennox Town Center. After freezing my butt off for ten years, the bus was nowhere to be seen, and I began to wonder if I would ever make it to the theater. I was at the correct stop, according to Apple Maps, which can often be dumb, and another bus driver. Come on Apple, it’s not rocket science! I called Michael to let him know what was going on, and I went inside The Marketplace on Neil to weather the storm. Michael drove over to scope out the scene, and we determined the correct bus stop was across the street. We bolted across the street, boarded the bus with seconds to spare, and finally arrived at the theater at the eleventh hour. Better late than never! Michael and I decided to see The Magnificent Seven, a western movie starring Denzel Washington.

You only live once!

If you’d like to read Michael’s version of the story, I’ve quoted it below: 

I want to brag about Jacob for a second. On a cold winter night this past Saturday, Jacob and I decided to meet at a movie at AMC Lennox. He told me he was taking COTA, which I assumed meant the van service that picks you up and takes you to your destination. He meant the actual bus system. The movie started at 5:30. At just after 4:00, Jacob embarked from Children's Hospital on his fateful journey. His route, which he'd memorized in advance, would require 2 bus transfers and 3 buses. The first bus took him from Children's to the Statehouse in the center of downtown Columbus, where he waited for his bus with other city-slickers amidst the hustle and bustle of the nation's 15th largest city. The second bus took him to Neil and 10th on campus where Jacob waited for his third bus. And waited. Unfortunately, due to the fact that a bus driver gave him wrong directions, he was delayed in making his final connection. When I found him he had been waiting in the cold for over 40 minutes. I was fortunate enough to be able to join him for the final leg of his journey. The above picture is us taking the third bus to AMC, where we arrived at 6:00 and saw Magnificent Seven. It wasn't until after the movie that I found out about his entire adventure. I wondered to myself whether--at his age and having never ridden a bus before--I would have had the courage to attempt this. I told Jacob how impressive it was. In response, Jacob looked at me, took a final drag of his cigarette, [joking] and spoke these words: "you only live once." This world needs more Jacob...

Stay tuned for a new post next week!