This has been the 3rd year of my grueling diagnostic journey, but also the 3rd year being a part of the disability community. It’s been three years witnessing myself as a violinist adjusting and adapting from the first time using a bulky standard wheelchair across the stage to my seat, to getting help from others with my custom rigid “tiny” chair, to relying on having carpool with other orchestra members for the traveling. I have learned a lot about myself and how much musicians would get out of their way to play gigs despite all those obstacles. I also learned so many tips from the other content creators with similar disabilities that guided me along the way of my adaptations. At the start of 2024, it is a calling for me to tell some of my travel experiences as an orchestra player and through medical trips.
I often refer to myself as a violinist with EDS & quadriplegia. And the first reaction from others was always, “Do you still play violin?” or “You don’t play it anymore, right?” My facial expression says all. My immediately frowned eyebrow gave away my surprised while unbelieved reaction. Why wouldn’t I be able to play violin? But the main question in the picture for me is how can I handle those trips for performance? Even though I am always in this keep rolling and going mindset, upper extremity weakness immediately sets the traveling into an exhausting workout boot camp. Maybe our bodies have limitations, but I always think about possibilities when reaching a goal, task, or trip.
The first year of my paralysis:
You can almost imagine it as the honeymoon phase for the first year. Things haven’t gone so out of control with my paralysis. With Spina Bifida Occulta and signs of a tethered spinal cord, I was the only one trying to connect the dots and lead to the right health provider.
Leaning into the Discomfort
Meanwhile, the loss of motor function in my legs only fires up my problem-solving nature. I am always curious about learning new things. Although I couldn’t walk anymore by October, I found those fantastic detailed videos other disabled creators posted about how to efficiently transfer, how to use momentum to position in bed, how to propel the wheelchair properly, how to take a rigid chair apart into my SUV, etc. My goal was clear: this is the first season for the orchestra to go back into performing with live audiences since 2020 social distancing. I answered more than a dozen performance opportunities for 2021-2022.
The idea of being in a wheelchair isn’t going to stop me from continuing to show up on stage and transfer myself onto the orchestra chair. The transfer onto the chair wasn’t the only transfer I had to do. Many venues are old & needed me to physically climb and lift my bottom one stair at a time to the stage level.
But that is also when I learned that my determination to go to the rehearsal helped orchestra managers build a strong case for the city to repair the elevator issues to meet the ADA requirement. Of course, old theaters will still have those issues, but people are flexible. They allowed others to help me more instead of draining my energy even before I started playing.
The second year of continuous progression into C4 quadriplegia (2022)
Because of the frequent traveling and the excitement of my newly learned skills of getting in and out of my car, my body depletes quickly. Everything is trial and error. Although adaptive wheelchair workouts are great for most wheelchair users, the constant stretch turned out to be the number one trigger for a tethered spinal cord.
Plan B when Travel as a Wheelchair User
So, by the time I flew to Rhode Island from Texas all by myself for the first EDS-knowledgeable neurosurgeon, I was already an incomplete C4 quadriplegic. The slight weakness in my arm did not stop me from exploring the beautiful city of Providence. I felt very proud of rolling up and down the sidewalk with still thick snow covering the middle of the streets. I love solidarity in a completely unfamiliar city. Researching on the next move, the next day public transportation gives me that adventurous excitement. However, the excitement didn’t last as the end of my consultation left me lost at a different entrance to the hospital. Due to the construction, the bus didn’t stop at the old stop sign when I rolled myself onto the same street. Fortunately, I was still a manual chair user when traveling, so it was easy to change the plan and get a Lyft to the airport.
Nothing is Wrong with Asking for Help
Having the medical trip with my husband was relatively easy and fun as I just provided spots to visit after the MALS surgery in May. The difficulty came when I lost more strength in my arms and hands, while I was still taking out-of-town trips for orchestra gigs with my Nissan Rogue. Even flawless adaptations won’t work for everything. As I got my SmartDrive in October, I also had a major progression that my shoulders were no longer functional. We didn’t know at the time that the C1-2 instability was the real devil in my loss of function. But I was sure that we had a long way ahead of us to find out what was going on with me. Asking for help was a MUST in my survival guide. I did find a way to maneuver around with a manual chair and the power assist, but the challenges were way past the amount of strategic compensation.
As any habit comes from repeated attempts, I felt so much easier by the time I took my second trip to Rhode Island to see my neurosurgeon. Same as a solo trip, only fewer routes, I asked anyone around me who was willing to give me a hand from the airport, to the hotel, to the clinic.
Third year as a C1 quadriplegic in Power Wheelchair (2023)
Interestingly, all the trips I have done by air were in the power wheelchair. Accepting what I need was the number one lesson I learned at the beginning of 2023. It might not be absolutely easy to accept this fact, but completely embracing the need for this new monstrous device made everything needed to adapt after it so much easier.
Public Transportation vs. Power Wheelchair
If asking for help all the time was the skill I acquired at the end of 2022 during several of my solo trips with my manual chair, then the past year was all about prior travel planning. This is important to able-bodied people as well. However, this goes with booking the flight to take public transportation home after landing in Dallas again. I have tried sleeping overnight at the airport and waiting on the very first bus to Providence, RI in March the day before my tethered cord surgery. We also found the perfect flight that ended up in the early afternoon to leave enough time for me to take 3 different trains to get back to Denton for Access Ride.
I have also tried a quick 2-day solo trip for consultation while sleeping in my power wheelchair overnight in the hotel due to trouble with transferring in and out of the bed. For the second night, I spent another night in the power wheelchair at the airport after coming back to Dallas around 9 pm. It was after a full day of traveling and neurosurgery consultation a month post tethered cord surgery, which didn’t end well due to exhaustion and barometric pressure change. The UTI and CSF leak led to a prolonged hospital stay. The main reason is that I wasn’t informed enough to know that there is a service provided for wheelchair users to layover. The company for wheelchair assistance also provides location if you happen to be stranded in the airport. As long as you don’t leave the airport, you can stay overnight in those designated areas where there is a couch, blanket, and assistance for transfers.
Compromise can be part of the Adaptation
The third attempt is usually the charm. The July trip to Rollettes Experience was great, despite the need to leave home at 5 am. But the Access Ride, door to door ride service we have in Denton, was quite convenient at the time. And DFW to LA was so easy and smooth. After dealing with missing armrests, side guards, and the weird position of the joystick controller, I knew how to be clear in communication with the ground workers and people helping with the aisle chair transfers.
For my last solo trip to Maryland, not all were as expected. I purchased the 5 am flight so that I could stay at DFW airport overnight and have almost an entire day to be in Washington D.C. However, due to continuous fainting spells after the bathroom, my wild exploring adventure was cut short. And I was never able to catch the Marc train to Baltimore… I tend to forget that me in a power wheelchair with very limited hands and arm functions is exhausting my body quicker than others. Maybe I have a million things I want to do on a trip. A slightly reduced amount of activities would help increase the overall trip experience.
Telling the stories and experiences I learned from my trip is a hope to inspire others to take the initiative to go out and see the world. I don’t want anyone to feel afraid of traveling because of some of my negative experiences. I think there are always lessons to learn about traveling, as much as learning about our bodies and our possibilities.
There will be more adventures and interesting experiences in 2024, as I just scheduled my fusion surgery and have my dad coming from Shanghai to accompany me. Happy New Year to everyone and all the wonderful experiences and possibilities!
