Part 2: The waiting game, how it affected me as a musician, and the lead up to surgery
There was about a year and a half where I was living in a bit of a limbo – I was aware that there was a tumour in my head and that I would probably need surgery for it, but I did not know when this would happen, or how my symptoms would progress. In terms of my life as a musician, a few things happened during this limbo period:
Firstly, the more people I talked to about the fact that I would likely go deaf in one ear, the more I realized that there are many professional musicians who live with single-sided deafness (SSD), and that in itself was not a career-ender. (The bigger game- changer for playing a wind instrument would be facial paralysis. Which luckily did not end up happening ☺ so I can resume honking soon). When non-musicians hear that you are a musician and are going to go deaf in one ear, they often gasp, pat your back, and say something dramatic, thinking that it is impossible (or at least incredibly difficult) to be a musician without the use of both ears. I am not trying to belittle the experience of losing hearing, because it is a huge loss with many far-reaching implications, but through this experience I realized that there are many working musicians who have SSD or significant hearing loss in one ear, and no one knows. There are many neurological factors at play to making music. The loss of one functioning ear is certainly a challenge for musicians, don’t get me wrong, but it can equally be a challenge to work as a musician with chronic muscular injuries, illness, or mental health problems.
Secondly, the diagnosis forced me to re-examine my life and what I wanted from my career, as any major illness tends to do. Long before all this began, I had started getting more interested in musicians’ health. I frequently led yoga workshops for musicians, and part of the reason for going back to school for my doctorate was so that I could research playing-related injuries and musicians’ health. Upon diagnosis, I spent many hours soul-searching and realized that as much as I loved teaching and performing, I didn’t want that to be all that I did. I wanted to explore a different non-musical career path, but had been scared to admit this to myself after devoting years of time and energy to being a working musician. Once you get in deep enough to any career or commitment, it can become scary to think about doing something different, even when it feels right. A silver lining of my diagnosis was giving me the courage to re-examine what I wanted from the next stage in my career. I am excited to start training as an occupational therapist in Fall 2020 and to explore how my background as a musician helps inform the creative profession of occupational therapy.
Thirdly, once the limbo period was over and I knew I was having surgery, I used all my recital prep skills to prepare for my big day. Granted, performing a major recital is quite different than getting your skull cut open. In the first scenario you have an adrenalin crash after the recital and then go about your regular life, and in the second scenario you have months of recovery and side effects after the surgery. Yet, it did feel like my years of laser-beam Olympic style focus leading up to recitals somehow transferred to my laser-beam focus of preparing for surgery. There was about three months in between getting my surgery date and having the surgery, and some of the ways I prepared were:
Becoming as physically fit as possible (regular strength training and cardio, healthy eating, lots of sleep)
Becoming as mentally fit as possible (therapy sessions to deal with the anxiety, regular yoga and other therapeutic movement practices, leaning on my close social supports)
Connecting with others who had gone through the same surgery: both for information and support
Lots and lots of walking to prepare my balance nerves (the balance nerve on the left would be snipped during surgery, and so the right side would have to take over. Yes, the brain is amazing!)
Vestibular rehab for the same reason as above
Making lists upon lists to try to gain some semblance of control over an uncontrollable situation
As the date got closer and the fear got more real, mindless distraction was sometimes the best medicine (Thank you Handmaid’s Tale and Offspring).
Part 3: opening up (yes, I am deaf in one ear), and the recovery buckets
I have been private about my health challenges up until now, but decided to share in order to potentially help others going through something similar. Even in my sharing, I have been hesitant to tell people that I have single-sided deafness (SSD). Partly because I don’t want a pity-party or undue attention, but I think also partly because I still feel some stigma as a musician. Despite the increasing awareness about musicians’ hearing health, I think there is still a sense that we need to hide our hearing loss, just as we may feel the need to hide our physical injuries or struggles with mental health, because of the fear that other musicians might judge us differently or it may negatively impact our careers. Recently there has been more awareness surrounding musicians’ hearing health and the shocking number of musicians who have some kind of hearing loss, whether from the hazards of being a musician or from something unrelated, like illness. (Side-note: Did you know saxophonist Chris Potter has SSD from a condition called Meniere’s Disease?) I think it is great to talk about musicians’ health in a broad sense, but until we actually are able to talk honestly about the specifics of our own struggles, we still have a ways to go in educating others.
Recovery from any kind of brain injury or surgery will look different for everyone, but in the case of my condition it involves the brain adapting and habituating to the loss of the balance and hearing nerve on one side. An expert in Acoustic Neuromas recently explained the recovery process through the analogy of having three different “recovery buckets”. The first bucket is the initial two-week period or so, when the leaps of recovery are huge: you are able to walk on your own! You go from feeling like a zombie to only a partial zombie! Then the second bucket is the next 2-3 months: you start resuming your normal life and the leaps of recovery do not feel so drastic anymore: people comment on how good you look, you likely go back to work in some capacity, and resume some semblance of a normal social life. But you still frequently feel like you are in a not-so-fun fun-house with a fishbowl over your head, due to the loss of balance nerve. You are also noticing the effects of living with SSD – filtering sounds, sound localization, and loud or busy environments all present major challenges and the brain is working overtime. Then the third recovery bucket is the remainder of that first year, when you are chasing the “final 15%” of recovery.
During the final “bucket” you might feel like you have stagnated. There can be frustration, as you still might not feel like your “old” self at times. You might wonder why it is taking so long. You might have some bad days and feel like you backtracked. Having goals in place for this time period can be useful, so that you can look back at the end of the year and tangibly see your progress. You might not feel like you progressed, but oh yeah, after 3 months you were able to ride your bike again. And after 5 months you rode 5km on your bike. And after 6 months you attended a big social event where you didn’t feel exhausted after one hour. And so on. I love the idea of recovery buckets, because this concept can easily be applied to any kind of health/recovery process, or even applied to a learning process. How often do we feel like we haven’t progressed, only to look back at the past year (or two or ten), and with some distance we can begin to see how far we have come from the place where we started.