We see strength

 Everyone knows that as a Trini I am a Carnival fake. Although I’m usually at home during the celebration, it’s because of my mother’s and niece’s birthdays and nothing to do with the waves of creative madness that flood and uplift the country.  This is a complete contrast to my siblings (blood and spirit) without whom Carnival couldn’t start.   In fact, it’s a standing joke that I’m sometimes on a flight out of the country as the celebrations start. I enjoy the quiet sidebars... being able to listen to the music, feeling the energy, seeing the delight as everyone prepares.  I’m not a fan of the crowds, the drunkenness, the mess and the massive disorder.  Why am I bringing this up now, in the middle of the night?

The music is great. In my mind, music is a language of God that underlies everything and it links humanity.  Yesterday, I had a chat with two of my  nurses as they helped me get in and out of the bed and we started to talk about different types of music and what they enjoyed. One said, “I like Jamaican music,” and we teased him mercilessly for about half an hour (and frankly, the rest of his shift!) so by the time he was done I had provided him a Spotify playlist of non-Jamaican Caribbean music to widen his education. (In turn, I’ve got Mongolian throat singing and Sami music to try. Fair exchange! 🙃🙂)   During that, and for parts of the afternoon when I could, I streamed a variety of music and was sometimes dancing in my bed which made my team and I happy- I was moving more as they wanted, and I was happy and distracted from the underlying aches.)

Music is a necessity, not a luxury.  I read some of the work of Oliver Sacks, the neurologist, who did amazing work with brain injuries.  He’s well worth reading, as he is insightful, brilliant and accessible. Back to yesterday, as I listened to my music, I gradually let the music flush out some more of my fears  and it sank in that in the last 9 years since my initial diagnosis I’ve never been free of fear.  I’ve written several times about my feelings as I travel this route and I’ve often returned to the points of pain and fear that traumatize me.  I’m obviously still handling the PTSS of my initial announcement, and I’m triggered repeatedly when we get another setback.  

I’m transported back to Trinidad November 2, 2012when Prof. Naryansingh said bluntly but kindly that I’d need emergency surgery for what he was 95% certain would be a malignant tumour.  My world collapsed.  I wondered whether it was worth getting involved with work or friends or anything.  I felt detached from my life, even as my friends drew me into activities.  Then I lost my mother suddenly, a year after my own surgery and days after I was called cancer free.  Those feelings of relief at my cure and sadness for my loss blended completely, but the dissociation remained.  Oddly enough, that was the time I made a determined effort to rejoin my life because I needed to enjoy my third (fifth? Seventh?) chance, and I started travelling more.  The year 2016 will be known as the year of travel, as I took 8 international trips (including 2 European trips) and I was loving it.  Then my oncologist broke the news that I was incurable, and I was spinning in that spot again, where there was yawning blackness and no stability.  The world just felt dark, empty, hollow and unstable and that darkness lurked behind everything.  Since June 11, 2017 I feel that I was marking time.  I’ve said how significant it was to me that my aunt had called me before I saw the doctor to say “the doctors are wrong.  That is not your plan.”  She didn’t call last week, but I think that she knows that I heard her 🤣 

I return so often to this place that maybe I need to redefine it.  I’m not sure how, yet.  I believe that my future is still unwritten, and that there’s more life for me than a few short months.  I know that for the past 4 years, every choice  I made was done in a sense of necessity only - I wouldn’t get something purely for pleasure because it would be a wastage since I saw my time as limited.  This week I am thinking that I should do more good and pleasurable things just because they add joy and value to life.  I’ve seen the responses from all of my friends, and it would be selfish of me to reject that and curl into a ball of fear in that vortex of uncertainty.  Your cards, letters, messages and notes give me a sense of value, that i am valued and appreciated in a way that I didn’t comprehend before.  I’ve seen the most devoted people demonstrate “Christian love and charity” so tangibly that I now have a mirror for behaviour in front of me.    Please don’t misunderstand, or think that I don’t appreciate everything that is being done to, far and in support of myself and my family.  But we all know people who preach Christianity but who are not exactly examples of goodness or kindness!  I have been the recipient of genuine charity  — people who show that I matter as an individual, not as a checklist item.  I hope that I can show this to others as I’ve seen it myself.  Lots of love to you, and may your day be as beautiful as you have been to me.