NikkiJo is a highly accomplished singer. She has performed in venues big and small. But when she became ill, everything changed for her, and her fighting spirit became the beacon of hope for herself and countless others. She turned her struggles into songs of valiant bravery and tender spirit. Please hear this Visible Hero's music-filled story in her own words...
I think one of the keys to surviving chronic illness and loss is to focus on what you can do, rather than what you can't. Also to have an outward focus where possible, rather than inward – thinking about what you can continue to contribute to the world and to others rather than on all that is lost.
For me, that is why I continue to strive to sing and share my music wherever possible. Sometimes it can be months or years before I manage to share any songs again and, when I do, it is almost invariably without any practice, no warm ups, just a few minutes where I can pull on all my reserves to manage. It is not easy for me to share music in such a state – I am a perfectionist by nature – nor is it easy to accept I cannot do more than this, however I have learned that even in its imperfect form, my music can bring joy and healing to others. That is my reason for doing this, that is my 'why'.
Chronic illness and suffering can drive you one of two ways – to bitterness and self pity, or – on the flip side – to a place where you have even more empathy and awareness for the plights of others. When you know suffering so greatly yourself, it can create an internal commitment, an unwavering drive to do anything you can to help alleviate the pain of others. If, via my music, I can bring some moments of joy and hope to other people, especially those facing struggles of their own, then it is worth everything I go through to record even just one song.
People often think or say 'oh you're singing, you must be feeling great'. Often it is the complete opposite. It is a fierce determination to rise above this illness, to refuse to give in, to find solace and joy for even a few moments. Most people would not be able to comprehend what myself – and others – go through to win even just these few moments of success, and would not realize that often I am so unwell that I cannot even speak, let alone sing or play piano. Many of us with invisible diseases lose our voice – literally and metaphorically – and become hidden from the world. That is what also drives me forward: Even though I would be doing so much more if I were healthy, if I do what I am able, those parts of me can never then be lost, and will not be invisible no matter what the illness throws at me. I sing to show that even though we are sick, we still have dreams, talents, ambitions. We strive to achieve and overcome despite all odds, we still have so much to offer. I sing for those who cannot speak up for themselves or be heard, and for those who have lost the battle to invisible diseases.
One of my recent songs, 'Little Bird' was a tribute to one such warrior. I made a promise to my dear friend, Renee, to whom the song is dedicated, that I would continue to fight, continue to do all I could to recover and to sing in her memory. I am not yet recovered, and it took me four years to be well enough to even get one take to record this song, but I remain determined to honour my promise to her, and to honour all those suffering invisible diseases. You are seen, you are remembered, you are valued. Hold onto hope and, as Renee used to say 'hold tight to every precious moment'. If my songs can give you even just a few moments of relief, distraction, joy and/or hope in the darkness, then I am humbled to be able to do that for each and every one of you.
Follow NikkiJo at:
Facebook - https://www.facebook.com/Nikkijo-Music-Lyme-and-ME-348022178624629/?hc_ref=ARR9vvIqkuROflpXPKDkTsL5-rplGrPRPgLrL6c3xOXKEZFP0Wl9YSF69sDrijg8Hoo&fref=nf
SoundCloud - https://soundcloud.com/theonlynikkijo
YouTube - https://www.youtube.com/channel/UCIS9vyLUDQfoolYymlOYLIw