Not until we are lost, do we begin to find ourselves

May 15, 2013 at 1:35 AM

Its been far too long since I've blogged but I have been hovering around. I have always enjoyed being able to blog about my musical success and the wonderful experiences I've had as a result of my musical life. Initially I told myself that I had stopped blogging because I was too busy being a university student which I suppose is partly true, but in reality, I think it was more so because suddenly my experiences were no longer just good ones that were part of the road to my dream of a perfect education and a perfect life after school. I guess by default though, no journey is perfect and without its ups and downs and it's ultimately up to the journeyman to learn from the challenges and bask in the successes along the way. There's no true reward without at least a little hard work along the way.

I'd like to think that I have been accepting and content and appreciative of all the things that have shaped my late teens and early twenties but the truth is that it has not always been easy to find that "learn" element .I'd even go so far as to say some things made me feel bitter toward whatever or whoever be at blame for my circumstances because, of course, it has to be someone or somethings fault. It can never just be or be a fault of my own. For me personally, the hardest part above everything else that has happened has been acceptance. Acceptance of myself, acceptance of my abilities, acceptance of the people around me.

This entry might be a bit long and drawn out but if for no other reason than to just verbalize (or typealize ?) for my own self what my journey has been so that I may have an even better understanding of what has happened and what I've lost and what I've gained as a result. Our lives are shaped by so many different little things and even the most insignificant act can have a massive impact on your life whether you realize it or not.

When I chose to study music where I did, I followed my heart and who I wanted to study with rather than what the bank account said, after all, student loans are basically free money, right? Well maybe not... but I feel luck to live in a country where education is made accessible to all levels of income. My first few months of university were in many ways blissful and in other ways very challenging but by the end of first year, I was feeling like I had gotten into the swing of things and mastered that nearly sleepless life that is common amongst many music students. I'd made friends, I was loving performing all the time and I had completely fallen in love with the city!

Towards the end of my first year at university, I started to become increasingly aware of a numbness that was taking over first one, and then both my hands. It was only for maybe a few minutes at first, but the time began to increase and within half a year, I had lost practically all the feeling in my hands. As a musician this is a really horrifying thing to experience. I was devastated but somehow managed to continue playing despite it all. The numbness began creeping up my arms. I sought medical advice and the first neurologist I saw could have cared less and told me that I was "a stressed out student and just need to deal with your emotions". Cause that's totally a good way to fix hands you haven't been able to feel for 6 months... I fought and saw another neurologist, I had nerve studies done, I had three MRI's, scans through the roof... blood tests... etc etc.. I was being told that I might have MS or a brain tumor or that it's possible I had some sort of a stroke. Yet the tests returned nothing and the constant numbness remained only now I was becoming increasingly aware of the chronic fatigue and pain in my joints, my inability to recall things and my trouble with balance and jumbled speech. I also grew more depressed as my dream of playing full time...... Something I had done since my early teens.....began to slip further away and the frequency of visits to the doctor and hospital increased. All while this was going on, I maintained a full course load and tried to put on a brave face and hide the fact that I was falling apart inside but eventually the stress and fatigue got the better of me and I crashed. I cut my course load by a large amount and even that wasn't enough. I had to cancel my grad recital just days before it was scheduled. Now it was time to stop trying to be a superhuman and instead to focus on getting answers as to why I was struggling so much. Armed with a fresh approach, the results of many tests and scans and a new specialist, I was diagnosed with fibromyalgia. I know some of you out there are dealing with the same and I feel fortunate to have those ears and words of advice and encouragement to fall on. You have been so good to me!

Finally, three years after my symptoms started, I had an answer. Not a great answer but not a death sentence either, and for that, I was thankful. I could finally live my life to the best of my ability within the parameters that were given to me. This wasn't without learning curves and speed bumps, let me assure you. Six months had gone by and I was gradually starting to play again. Things were good! I was becoming more aware of what made me feel worse and ways of coping with the pain. It was Christmastime and I had a painful shock of pain on the left side of my face. It went away quickly so I didn't make much of it. A week later, it happened again. And again and again. Suddenly these shocks were turning into prolonged pain unlike any I had ever experience. Pain so bad that it would sometimes make me throw up, that I'd be bed bound, that I couldn't eat, drink or do anything but lay on my bed .For the short term, the doctor gave me tylenol 3's which did nothing for the pain and but the fatigue from the pain and the drowsiness of the drugs would help put me into a sleep. When I finally saw a neurologist I was referred for an MRI. I was diagnosed with trigeminal neuralgia. Yay, at least my diseases rhyme! myalgia...neuralgia....
ok, so enough with the humour. I have thankfully found an oral medicine band-aid that seems to work about 75% of the time so that I'm not stuck, writhing in bed in agonizing nerve pain. I'm not a surgical candidate to try and correct the problem and the other solution aside from medications is a process called a rhizotme where they basically attempt to kill the nerve through radiation. As you can imagine this is not always the most accurate of procedures and it has a long list of potentials that can go wrong never mind the fact that your face will be completely numb where that nerve runs after the procedure. So for now, I have decided to take medicine everyday to help manage the pain and will reconsider my options at a later date if need be.
After getting through all of this and knowing that I will live in chronic pain and be on some form of medication for the rest of my life, I have finally found a place in myself and in my relationships that I can be content. I haven't been able to finish school at this point but I have overcome so many other barriers and come out on top in many ways and possibly have even accomplished something greater than a piece of paper with some letters on it after my name.
So now onto present day, I'm not a violin virtuoso by any means and I'm lucky to get 30 minutes of playing done a day, which I'm gradually attempting to get closer to 1 hour, a far cry from those 6-8 hours a day I would play in my teens and at university, but it's a start. Work holds me back a bit and so does my health. When I'm not in excruciating pain, I usually am very nauseated and fatigued so it isn't always easy to find the motivation to play or to not get discouraged when practicing isn't as easy as it once was. But despite it all, I'm striving to keep my head up and to stay positive. And, as I start to play more and more I am starting to think more and more about performing again. And, as should luck have it, I have a concert of trios by Beethoven and Mendelssohn in just another week or so! And I signed up for an informal, casual music camp to hopefully help get me back into routine and the mindset of the musician rather than the mindset of something with chronic disease. Maybe I'll even think about trying to do a short recital late this fall? Hmm...

I've learned so much these past few years. I've learned that I still love music, more than anything, and that I want music to be part of my life and career in some capacity. I've learned that a piece of paper from an institution is just that. A piece of paper. The letters after my name might open the door to different opportunities, but ultimately, it's what I learned all those years at university and what I gained from my experience that will help me to succeed in my chosen field, not the fact that I haven't - at this point at least - completed my degree. I've learned that I'm a stronger and braver person than I ever thought I was or could be. I've learned that it is so important to surround yourself with positive people. I've learned to not ignore your inner voice but to instead embrace it and endeavor to listen to and understand and to accept what you are feeling. No one expects you to be invincable. Cry, laugh, get frustrated, be happy, be angry - it's healthy to experience emotions, just don't let yourself only feel one thing and nothing else. I've learned how to be a better person and a better friend and I've learned how to find balance in my life. I'm not saying that every day is a walk in the park, far from it, but every day, I strive to find the silver lining. Right now, it's back to finding work (hopefully music related!) since the boys I nanny two days a week are moving overseas this summer and I'll need to find another way to pay the bills!

Thanks to all who took the time to read, and if you suffer from a chronic illness and are in need of some words of encouragement or an ear to vent to, please feel free to send me a message! I'll leave you now with a photo reminding us West Coast dwellers that spring is here and summer is just around the corner.

From Mischa S.
Posted on May 15, 2013 at 7:14 AM

As anybody else here I'm speechless. I feel so terribly sorry about the ordeal you have to go through!

I wish you that your suffering alleviates over time peu à peu. And that you a l w a y s keep your fighting spirit high!

From elise stanley
Posted on May 15, 2013 at 7:58 AM

Ditto...

Wow, you are one heck of a fighter. All that - and not one complaint. My best friend has TN so I've witnessed second hand how excruciating painful those attacks are. Clearly playing violin and being in music serve as a spiritual life-line for you. I hope everything starts to settle down for you - by the way did you get the feeling back in your arms?

Thank goodness that you are still able to play :)

From Laurie Niles
Posted on May 15, 2013 at 3:51 PM

I'm so sorry you have had to go through all of this. Wishing you healing, and also the vision to create your life in a way that manages your health while making you happy and fulfilled.

From Terez Mertes
Posted on May 16, 2013 at 4:05 AM

Oh, Kelsey, what an ordeal, what a struggle. I'm so sorry you're being so challenged by this kind of stuff at such a young age, but wow, you're processing it so beautifully, so wisely. Consider it this way: you've achieved your PhD in life wisdom years (decades?) ahead of any of your friends!

Joking aside, I'm so sorry to hear this, but your gift in writing has only grown stronger (ditto the photography) and this was so beautifully written. Really, you should submit this story for publication. It's so bittersweetly beautiful, so achingly honest.

Wishing you the best, loved hearing from you, loved reading your words. Hope to see you more around here again! (Um, well, I guess I need to maybe be the one to show up more regularly here again...)

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Not until we are lost, do we begin to find ourselves

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