June 22, 2019

A Collective Cloud of Love

Journal Entry #39

That was the sweatiest night of my life.  No blankets, my skin was laden with moisture and I woke to my husband laughing about how terrible I smelled.  The Miltefosine is clearly coming out through my pores today…and it stinks! Two showers today, and even now, I can hardly stand myself.

Clearly, my body is in full detox mode now.

My stomach is really gurgling today, telling stories so loudly that one cannot help but laugh.  The cramping is finally subsiding and all those internal organs are settling…finally. I have been Cannabis free for 24 hours – an amazing sign of improvement!  Although I am still experiencing discomfort, periods of nausea, fatigue, headaches and extreme hot flashes, I have been able to employ my breath and positive thinking today to get through it.

Yesterday I did IV Therapy with Dr. Katrina.  She mixed up a bag of nutrients based on my most recent blood work and current symptomology and I sat comfortably for 2 hours as it infused into my body. We added in Magnesium and Calcium this week to help offset the stomach cramping and also the heart fluttering that has been happening due to the dehydration. This week’s therapy was much easier than last week.  Although my veins are still tricky to get into due to dehydration, my body accepted the IV a little quicker than last week and I only experienced minor cramping in the arm.  A typical infusion should take about 45 minutes, but for me it took 1 hour 50 minutes.  Even that is an improvement over last week, by about 20 minutes.

The physical healing is well underway, and we are noticing slight improvements every day.  I am finding it challenging to look around and see things that need to be done (I’ve started a list) and my brain tells me to get up and do them…but my body is still resisting or fatiguing easily or before the chore is complete.  For instance, today I changed the sheets on my bed.  It was long overdue, but after my sweatcapades last night, I had no choice!  I was out of breath by the time I finished, sweating again and ready for another nap. Unbelievable.

The struggle is real!

This is going to sound ridiculous, but last night, while I was sweating it out, NOT sleeping (until 5am), I heard a bug in the bedroom. I would turn on the light to find it and it was nowhere to be found.  I would turn out the light and it would be buzzing again.  Light on, bug hid.  Light off, bug flying around.  Until finally, I felt something crawling on my neck and SMACK! 

Got ‘em!

It was just a mosquito.  BUT, once the light was off again, the real perpetrator was still buzzing and bouncing off the walls and having a grand time.  Light on.  Light off. I have yet to find the friggin’ thing.  I hope tonight is better.  And I am excited to do some mental work, brain re-routing and hypnosis next week to alleviate this hypersensitivity to bugs.  Even though they are a pain in the ass, not all of them are detrimental to our health and they are an important part of nature which I would prefer to honor and not fear.

Some of our amazing friends put together a raffle to help support us with the medical expenses and lost wages.  I am still not approved or receiving disability support from our insurance company. Lionel Dwyer is a World Class Wood Carver, who not only has one of the biggest hearts I have ever met, but carves incredible birds and fish that literally make your jaw drop.  He carved a life-sized Loon on my behalf to be raffled off to one lucky winner.  The Loon is stunning, the details in its markings are so intricate and layered and the coloring on its head is iridescent and so life-like one must do a double take to be sure it isn’t real.  He had countless hours into carving and painting it, bringing it to perfection.  He has a true craft and talent that is really admirable!

Mark Cavanaugh, a two-time Ontario Bass Nation Champion, and an awesome friend, contributed a guided fishing trip to the raffle as well.  Mark and his wife Krista and their son Riley, are the family that traveled with us to Belize last Christmas where we were hit with the swarm of Sand Fleas.  Krista actually incurred more bites than I did, but was fortunate to not have as many burrow into her flesh, and the ones that did, did not carry the Leish parasites. The Cavanaugh family are fantastic to travel with, they are supportive and amazing friends and we are ever grateful to have them in our lives.

The raffle also included a Party in a Basket as well as a Northern Pike Painting.  The raffle came to a close this week, with the winners being drawn by Lionel’s daughter Jayme.  Congratulations to the winners and from the bottom of our hearts thank you to all those that bought tickets in support of our family.

Mark and Lionel went above and beyond to put this together. Their Big Hearts are truly appreciated and I know that whomever took the Loon home, will have a stunning piece of art for their home and whomever gets to spend the day with Mark fishing will love his expertise and make amazing memories.  Tim and I are both so blessed to have these guys and their families in our lives, and we are extremely grateful for all of their love and support through this journey. I want to thank them, but more importantly we want them to know this:

We love you.

I am still overwhelmed with the generosity of our community, friends, co-workers, families and strangers.  There are little gestures and grand gestures, visits, anonymous donations and heartfelt cards and letters arriving every day that reaffirm goodness and love in the world.  As terrible as this process has been for our family, the love and generosity around us has wholeheartedly outweighed the downside of Leishmaniasis.  As I emerge onto the other side of Leishmania and start to look back, I can see that I experienced pockets of brutal suffering within this spectacular cloud of love.  That cloud of love has been a lifeline for me, a saving grace, a reason to fight and a reason to let go.  There isn’t one person responsible for this cloud of love…

It is a collective cloud of love.

Although, I am certain that the Universe, God, Divine or whatever we want to call that Presence that is bigger than us, has orchestrated all of this for us.  This Leish Journey hasn’t just been about me or even my family.  Yes, we have been impacted and are still learning a great deal about each other and life though it…but it is becoming clear to me with the web of support that this journey has affected others too.  Others have been moved by the story, something has shifted in their hearts and opened them up to loving, serving, helping, supporting and engaging in the village and beyond.

There is a broader lesson here for all of us.

I really believe that everything in life happens for a reason. That our paths have crossed in this lifetime for a reason – and I can’t help but wonder if the bigger message here for all of us is not that of suffering or surviving or being strong. Perhaps the message is bigger than the meals provided, the dollars donated, the raffles and fundraisers…perhaps these things, as important as they are and appreciated as they are, are the representation of a bigger message for the world.

Love.  Always. Wins.

All of these actions that the Big Hearts in our village have expressed, clearly show that there is more love than hate in this world.  These actions were generated from a place of deep love and no matter what we face in this life, when we come together in support of one another, anything is possible.

Anything is possible.

A dear friend of mine, who has struggled and suffered in ways that are unfathomable, said to me this week, “I thought that if I did good and was kind that life would be fair, and it doesn’t work that way, life is unfair and we just have to accept it.” My heart has bled with hers on several occasions, and I can’t profess to know the appropriate way for her to walk through her journey. What I believe, is that we didn’t come here to suffer.  We didn’t come here to be the judge and jury on what is fair or unfair for our lives or even for other’s lives.  I certainly don’t want that kind of responsibility.  Shitty things happen to all of us.  Her shitty thing is no worse than yours or mine…it just is what it is.  And I am not saying that to minimize her pain, or undermine her experience or invalidate her feelings…because I fully appreciate that we all handle our life experiences differently.  For me, if I were to place judgement on all the things that were fair or unfair in my life, I would be swallowed up by the shit. Some may say that Leishmaniasis is unfair, Cancer is unfair, waiting for a new set of lungs is unfair, accidents are unfair, delivering stillborn is unfair…I acknowledge and validate that these things are painful, that they cause us to suffer, that they can often mean loss.  In my heart, I can see that all these experiences, even the most painful ones, are there to show us that love always wins.

When illness strikes, what happens?

When death occurs, what happens?

When accidents take place, what happens?

The village rallies and love is mobilized. 

Hope is restored even in the midst of pain.  We come together, deepening our relationships, acknowledging that we are not alone, validating our pain through each other and moving forward together towards the next experience that life orchestrates.  All experiences in life whether they be of joy or suffering are here to prepare us for what is next…even if we don’t know what that is.  They help us relate to one another more authentically.  They help shape and sculpt our footprint in the world.  Certainly, they influence our choices and relationships. We need experiences in life in order to reveal our true essence and help us make legitimate connections.

Life is perfectly imperfect.  I am perfectly imperfect.

This may actually sound crazy, but the experience of Leishmaniasis has been perfect for me.  Not unfair. Have I suffered? Yes.  I have suffered perfectly.  I had become complacent in my relationships.  I had gotten comfortable in my routine.  My priorities were lopsided.  My goals unclear.  I was due for an experience. It could have been cancer or an accident or a loss…but Divine orchestrated a parasite to bring me the love that I so desperately didn’t know I needed.

A microscopic bug brought me to my knees and has taught me the invaluable and perfect lesson that love always wins.

You can call it what you like.  Unfair.  Terrible. A horrible experience.  Shitty. Painful.  Suffering. That’s up to you.

I’m gonna call it a gift.

Xo Juli

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