As most of you know, the last few years have been tricky. For someone that used to be thoroughly independent, active and energetic, adjusting to life with an illness is tough.
Recently I have been reminiscing. All of the years spent at music college, I spent my time swinging between love and hate. I loved the sense of excitement and freedom when playing with others, and the means of expression I had when playing beautifully sad music. I loved the social aspect, especially those late night rehearsals with a cuppa (or wine) in hand on a dark and cold winters evening. I even enjoyed early morning practice sessions once I got into the habit of getting up on time! I also enjoyed performing eventually. It took me years to get past the persistent “I’m not good enough” voice – that was my toughest challenge of all. The first couple of years I couldn’t stop sabotaging myself before a concert. I would end up not practicing for 3 weeks before a performance, which I suspect was a way of allowing mistakes without a sense of my whole self being unacceptable. Once I got past that tho, performing turned into a favourite. I was excited to play, to share. I was able to start being myself.
By the time I left college, I thought I had had enough. Try as I might, I was never satisfied with my work, and it was exhausting to keep pushing toward a goal that doesn’t exist. Perfectionist tendencies aren’t always a great thing! I had stayed with my teacher long passed our prime, and I became frustrated. I wanted to move forward in the last year there, but it felt like a mountain I couldn’t climb without help, and I didn’t have the energy to fight for it. I was ready to throw everything in to my final recital, but most of my lessons that year were frustrating and disheartening. With hands that went numb mid piece, and a lung capacity better suited to a mouse, I couldn’t attain the standard I needed. I’m pretty sure my teacher grew just as frustrated as me.
During my last couple of years at music college my health got noticeably worse. The pain I had experienced from the age of 12 got significantly worse, and I started to suspect that it wasn’t just music to blame. No other musician I knew was waking up 4 times a night in agony, or needing to lie on the floor to find their breath again. My fatigue worsened, my heart was galloping of at 130BPM at rest, and much higher as soon as I was up on my feet. I was constantly fighting to get enough air, which as a recorder player proved quite an issue! In short, music was becoming an unrealistic goal. It became a case of pushing myself through to the end of my course so that I had a degree under my belt, and accepting that I just couldn’t play at my best.
After leaving, I spent 1/4 of a term teaching, and a full 7 months working as a carer. I loved working with mental health, and figured that was a direction I could head to. I would work enough to do a postgrad in art therapy, and then work from there on in. That was the plan, but unfortunately my body thought otherwise.
In November of that year I got optic neuritis (swelling of the optic nerve), and ended up on a long course of very high dose steroids. Contrary to popular belief, I didn’t end up with gym sized muscles, but a couple of walking aids instead! In reality I can’t be sure if the steroids really did finish me off, or whether I would have headed in this direction anyway. My life closed up into being mostly housebound, and I had lost everything.
Today, I am marginally better. Not because my body is any fitter (quite the contrary in fact), but because I am accepting the help I need. Looking back at my studies, I would probably say that I needed walking aids sooner. In reality, POTS and EDS were taking their tole, and I can’t help thinking that if they had of been managed properly, I may have ended college on a much better note. Perhaps I could have managed that first I missed by a couple of marks, or ended my recital on a real high. Perhaps I could have carried on playing for longer.
Tonight I have a painful ache for my past life. No matter how much I struggled, I can’t help feeling that the music I learned for 22 years is being wasted due to the conditions I am living with. I miss playing, and I miss performing. I miss that sense of freedom I experienced in fleeting moments, and the challenges that came with trying to attain it. I miss striving for goals, and being driven to work hard for something that might just be possible. Most of all, I miss the music.
In many ways I am blessed. I have found other ways of doing things, and on a good day, I can pretend that it has been my choice to choose another path. I have other hobbies in my life, and I still have the dream of getting fit enough to study and work again. All is not lost – it can’t be. I refuse to life this life for another 60 years.
Loss is a very tricky beast when it comes to your health.