May 30, 2021

I Just Want to Live.

I’ve been in a weird head space the last few weeks. Initially, I thought it was the pandemic and the extended lockdown.  It seemed like a decent explanation. But, looking back, now I see that the announcement to extend the latest lock down triggered or reactivated a trauma response – there are things that lie dormant only to resurface at unexpected times.  I had just pulled into a parking space at the grocery store when I heard the lockdown update on the radio and my head hit the steering wheel as I sobbed, “I just want to live.”

For many of you who have followed my journey through Leishmaniasis, you will know how hard I continue to work to find wellness every day.  The two year anniversary of diagnosis has just passed and even though it wasn’t on the top of my conscious mind, clearly my unconscious mind was aware of the date.  Isn’t it funny how the body/mind remembers these anniversaries even when we don’t particularly want to remember them?  That day, when my head hit the steering wheel, I flashed back to a moment at UHN sitting in the  room with the Tropical Disease Doctor.  She was explaining that without treatment, I would have two years or less before the bugs would claim my life.  Because the bugs were so aggressive in my case, already traveling internally and making their way to my sinuses and organs after only four months, the prognosis was likely a little less time than that.  The anniversary this year, seemed compounded by the reality of not only the anniversary of diagnosis, but also the realization that I likely wouldn’t be here today if I hadn’t done the gruelling treatment that I am still recovering from.  It kind of feels like a double whammy emotionally.

But as you know, life isn’t always simple, so let’s add another layer of complexity to it all.

This year, just a month ago, I turned 42.  It’s been three years in a row of not celebrating my birthday my way, but that’s another story.  Anyway, I had a dream recently and my dad was in it. He’s been gone now for 20 years, but when I woke and was reflecting on his life and our time together I remembered that he died just one month after his 42ndbirthday.  I am on the cusp of outliving my own father, I thought.  In fact as I write this at this time in my life, where he was at this point in his life, would have been his final agonizing days.  In fact, we were both diagnosed (albeit with different diseases) with a similar prognosis at the same time in our lives, lived through chemo and treatments at the same time in our lives, the only difference is that I have lived and he did not.  I have seen 42 and one month old, he did not.

A whole host of emotions are wrapped up in this for me.  Understandably, I am contemplating my own mortality again…in a different way. Leishmaniasis is the defining mark of life BB (before bugs) and life AB (after bugs). I have worked so hard to find my well, to be well, to move forward and to find my way into life AB.  I’m committed to the idea that my past doesn’t define me, it actually refines me. Contemplating my own mortality has made me realize that I am not afraid of dying, I am afraid of dying before the world sees who I really am, before they know my contribution to the world, before they benefit from my life’s work. This awareness has fortified my intention AB to live passionately and purposefully.

I think that is what has been so hard about this latest lockdown for me.  I have worked so hard to live life again, on my terms with direction and purpose, full and joyful and there has been very little outlet for doing that since the pandemic began. I’m not the only one who is experiencing this.  I was chatting with a recovering cancer patient and an organ transplant recipient the other day and they had similar sentiments.  The restrictions in life when you go through health related issues can be severe and through it all is the hope of what’s to come that helps us persevere.  And it’s a giant let-down when we finally have persevered only to be locked down, life stymied and limited by a pandemic. I was really just getting back on my feet, returning to a new normal work load, excited for what’s ahead and then…BAM! Covid.

Don’t get me wrong, I thrived through 2020. I crushed a life time goal of authoring a book. I invested in courses and trainings, expanding my tool belt. We engaged as a family and enjoyed quality time together. We’ve created space for new health care routines and daily exercise programs – in fact, we have a more physically healthy household because of Covid.  It’s the last lockdown that has triggered and churned up emotional and mental gunk for me that requires a little effort to process.

So what’s to come of all of this insight and awareness? I don’t know.  But I do know that as I sit here in this beautiful sunshine writing, that I truly am blessed.  Even though I have a sense that I am on borrowed time, I feel encouraged to live fully, embracing the beauty and precious moments as they come.  That life is only doom and gloom if we choose to see it that way.  That pandemic or not, restrictions or not, there is always room for joy. I’m reminded of the power of choice and choosing which filter to see the world through is a great place to start in making the shift.

There are many that won’t survive this pandemic, either because of Covid itself, or from falling through the cracks of the broken health care system, or by choice.  Most will be forever changed from this pandemic.  We cannot be unchanged by the events life brings us.  And this one has been so full of lessons, many of which we are still learning. I have this underlying sense of responsibility to not let all of this be for naught – to live full and hard and free in honor of all those who have gone before us, including my dad. I now get to live in ways that he did not, and experience the gift of time that he did not.  I want to make the most of it, for him and for me and for my family. 

I want to live. 

I want to thrive.

And along the way, I won’t take one single day for granted.

And I’m going to do it my way.

I just want to live.

Xo Juli

1 thought on “I Just Want to Live.”

  1. Hey Juli,
    Hang in there. I would love to do some complimentary reiki to help you feel stronger. Your story touched me deeply. I am sorry you are dealing with so much. Drop me a line sometime.

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