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SHOW NOTES:
In this episode, I shared my medical story, part 2, about how I experienced traumatic experiences with progressive paralysis while staying in the moment and continuing my performance career.
I want to share my stories now, right before my surgery next week, on the podcast to raise awareness of the rare disease and let everyone know that it’s okay not to know the answer or find your diagnosis yet but still be validated for your symptoms.
Living in the present is the ONE thing that helps me through each traumatic experience with paralysis, still enjoy each of my performances, and cherish each performance opportunity.
As a musician podcast, I want to encourage disabled musicians to come out and talk about their experiences with accessibility at work, inclusivity in different work settings - orchestras, chamber music, composition, conducting - of course, not limited to these.; and what do you think are the obstacles for the disabled musicians to shine… list literally can go on. So, if you are a disabled musician and love to talk about your story and experiences, you can reach out to thrivexstrive@gmail.com; or fill out the contact form on my website amywangviolin.com.
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Living in the Now: The Journey of My Progressive Quadriplegia as a Musician
Full Transcript:
Welcome back to another episode of Thrive x Strive Musician Podcast. This is the host Amy Wang-Hiller. Today we will continue the story of my medical journey.
It has been quite an eventful week. I am trying to batch-record several episodes of the podcast as well as some of the Instagram posts. Because I’m heading off to Rhode Island for my surgery. By the time you hear this episode, I will guess I will probably be recovering in the hospital and out of the OR. So you might wonder: why do I need the surgery? What is the surgery for?
When I look back to the last time, I was doing the podcasts, and YouTube, the biggest difference in my appearance is that I am now in a power wheelchair due to my paralysis. I want first to make a disclaimer here. I am here telling you my medical story, not for any medical advice or diagnosis. I am simply trying to raise awareness of problems dealing with the medical system and the life of an undiagnosed quadriplegic musician.
As I mentioned last time in the podcast about my ER experience with prolonged neck hyperextension, I started to develop dystonia and periodic paralysis after my seizure-like activities. I was not as scared because I knew after 30 minutes or an hour, my legs would come back to normal. But what surprised me the most was when the orthopedic surgeon discovered that I had a weakness on the entire right side of my body, and my right hand has a weaker grip strength without me even noticing it.
Then 6 months into my EDS diagnosis, I was having so much sacrum pain and sciatica. With the help of the chronic illness community, I dived into perineural cysts, also called Tarlov Cysts. Found the best Tarlov cyst neurosurgeon in the country happened to be in the Dallas area. It was confirmed with several tests even got the offer for surgery. Except it is a problem, but not the cause when real paralysis starts developing.
So my sacrum MRI table was hard on my low back and sacrum. I was having excruciating pain during the imaging. When I woke up on the second day, my leg started to become heavier, and … unable to lift or move my feet. I don’t know what’s the common fration of paralysis, but I heard so many stories of people rushed to the ER. That was not my story. I do not know why I’m always so calm, even after experiencing paralysis. The only thing I did was directly dive into the problem-solving Mode. Start using my heavy, bulky wheelchair that I got for my POTS. Because I thought that was because of the cyst. I was not wrong because after August's steroid injection on that sacrum nerve roots, five days later, I was able to walk slightly bearing weight on the right leg as well. Unfortunately, the strength did not last long, only three days. Sciatic pain increased so much, and so did the weakness. At least the good timing of the injection allowed me to have a chance to help move into my new apartment,
Because I love to be active, I bought myself a crystal cane and ankle braces for the foot drop. It was too painful to drag my leg across the campus with my crystal cane, so I bought myself a pink rollator, the Walker, that has four little wheels and a seat. I said to myself, I just need to push a little more, and wait a little longer till I get onto good insurance in the fall so that I can do the surgery for the Tarlov Cysts. although I was in so much pain that I decided to reach out for a custom wheelchair, I went back to my teaching job with my heavy bulky one. I even accepted some concert offers for the new season. But by the time I received my rollator, I was again in too much pain to drag my leg for more than 10 feet at a time. I had to ask my friend to push me in the rollator across the campers.
Mobility aids my savior. Even though I only had a bulky heavy wheelchair, I was able to go on trips to concerts. There are of course accessibility issues with the theater, but I managed to maneuver around the backstage pretty well, of course, with the help of many of my friends and colleagues. I remember that the October concert was also the time I suddenly started having left leg paralysis. Again after a 4 1/2 hour long MRI, when they pulled me up from the table, there was a shooting pain from my sacrum up to my spine. two days later, my left leg went out in the hotel on the trip to that concert. I found it funny although both of my legs went out, my immediate reaction was how can I load and unload my wheelchair from my car. How can I drive? How can I find a way to finish up this concert and go home? Luckily, my left leg regained its function slightly but got weaker and weaker throughout the next week. It was no longer helpful to do the Tarlov cysts surgery because the surgeon was concerned something went the wrong way up in the spine. The last concert I played standing was at the end of October when I just got a rigid frame loaner wheelchair after my wheelchair evaluation. I rolled up onto the stage, stood up, tried to find balance, and bore all my body weight on my slightly working left leg. For safety reasons, I had an expensive hand control system installed into my car because I still have so many orchestra gigs that require me to drive out of town. I still want to continue playing.
As I searched around for answers to why this was happening, I raised quite a good awareness in the orchestra that I played. I was able to use the lift into the orchestra pit for opera. And I received so much help from my colleagues with my violin, when I do my transferred in and out of the chair. As December approached, I attended the first ability expo. I do not know if I was too tired, exerted, or what other reasons, but my hip suddenly went out after the first day of the ability expo. Again, without being so scared of what’s going on, which, after all the tests, and experts’ opinions, they don’t even know. So I learned how to transfer; one hip paralysis, wouldn’t put me down from going to my next gig, the nutcracker show. It made me concerned when my paralysis suddenly came up to my chest after one night of sleep. I lost my core strength just through one night. I asked my husband to sit me up. And three days later, I learned to adapt to my new level of paralysis and sit up myself by pushing left and right into the bed with my elbow. It was Christmas time, and even though one of my doctors suggested ER or inpatient rehab, who doesn’t want to spend their Christmas at home? My hand strength was also decreasing when I was driving five hours to Arkansas for a gig. So I don’t know if I should blame the driving or the fitness class the night before the paralysis with so many bending-down movements. The reality is I became a higher-level paraplegic. Although I did not go to the ER or inpatient rehab, the Winter of 2021 was a crucial turning point.
As my weakness progressed further, I reached out to my current neurosurgeon to discuss the possibility of tethered cord. I flew all by myself to Rhode Island for the consultation in February. It gave me the hope that tethered cord might be the answer, but I came back also with the task that I have to rule out everything else with more tests, throughout the whole spring semester. February Also, was the month that I was confirmed with a C4 incomplete quadriplegia? Throughout the whole process of my progression, it comes with nerve pain, spasms, bladder, and bowel dysfunction; after all, anything comes with spinal cord injury, except with non-traumatic or unknown etiology, spinal cord injury, I am left to figure out how to manage everything. Because life continues, and I cannot sit around and wait for people. Tell me how to do things as a quadriplegia. For my independence, I learned how to manage my bladder and bowel dysfunction, and how to transfer, all due to the willingness of many others with spinal cord injuries to share their tricks and tips on social media and YouTube videos.
Because of my abdominal srgery and several other delays, I did not get to see my neurosurgeon again until this December. Through the eight months, especially after August, my downward progression of weakness was rapid, every month I would lose slightly more on my upper extremities, until October 14, I noticed that my shoulders were no longer able to activate for shrugging, and pulling back with my shoulder blades. As now I know, that my sensation also moved up to C2, I also lost the ability to rotate and nod my head as if Somehow they are stuck. Yes, I got an offer for the tethered cord surgery and hoped to stop the progression. And for the last six months, adaptations became harder. The weakness required me to change angles, utilize gravity and momentum when I was playing And it was because of my continuous adapting to playing, the daily activities were very similar to also use the same free resources like gravity, pivot point, and momentums.
Living in the present is the ONE thing that helps me through each traumatic experience with paralysis and battles with doctors.Emotion regulation comes from being able to center ourselves. It does not mean you can not have emotions. But often after we get lost, and after we get upset about certain things, certain people tend to get stuck in that emotion, some very easily come out of it and move on with their life. That’s because some people can center themselves very quickly. I don’t think this came naturally. It takes practice and persistence to rewire our thinking and our brain.
It took me several years to be able to remove the unwanted thoughts to be more present. It doesn’t mean that I never felt worried, insecure, or lost… Those feelings come up a lot, but they don’t linger and they pass quickly. And of course, we can talk about those in each chapter of our solo episodes, things like grief, insecurity, medical burnout, and so on.
But now, At this moment, as the surgeon hasn’t opened me up, and revealed the problem, I remain neutral in my opinion about my pathologies and can’t deny that I carry a bit of insecurity as it is still unknown. Doesn’t matter what caused me to become a quadriplegic, I suffer from every aspect of this spinal cord injury. And this is not the end of the story. Like any mystery series, we have revealed the ending, the answer, and the truth yet.
I want to share my stories now on the podcast to raise awareness of the rare disease and let everyone know that it’s okay not to know the answer or find your diagnosis yet, but still, be validated for your symptoms. As a musician podcast, I want to encourage disabled musicians to come out and talk about their experiences with accessibility at work, inclusivity in different work settings - orchestras, chamber music, composition, conducting - of course, not limited to these.; and lwhat do you think are the obstacles for the disabled musicians to shine… list literally can go on. So, if you are a disabled musician, and love to talk about your story and experiences, you can reach out to thrivexstrive@gmail.com; or fill out the contact form on my website amywangviolin.com. Please check out the details in the show notes.
Thank you so much for listening through my not-so-organized storytelling and crazier-than-fiction medical journey for the last two years. Thank you for being interested in my life from an abled body musician to a quadriplegic violinist.
I hope my openness will bring in greater conversations in this new season.
I will talk to you again in my next episode.
if you like this episode for what I shared, please subscribe to this podcast, write a review, share and download.
I will talk to you next time.