June 6, 2019

Grass Roots Good Will

Journal Entry #30

Today was a solid day.  I am not sure that that is better than diarrhea.

Otherwise, I would say, no change.  All side effects continue.  Wounds are healing in their own time.  The foot pain is intense and when at its worse will reduce me to tears.

But I don’t want to complain about the symptoms I am experiencing. It is hard to write about the symptoms without sounding like I am complaining…and today, I don’t want to lend the little energy I have to those lower frequency emotions.  Instead, I want to work out an aspect of kindness that I have experienced…and although I accepted it, I haven’t actually processed it to find the lessons…yet.  Journaling my way through the thoughts and feelings typically helps me locate the lessons. So, where to start on this one?

First, let’s talk about the kindness of a stranger.

We have had friends of friends who have heard about what we are going through and people we have never met before, send well wishes, donate items to raffle, and who have sent money to help with our medical expenses.  Some of these were big ticket items, some were sizeable financial donations.  From strangers.  Complete strangers to us. It is mind blowing how generous our village is, but also the village of our villagers.  This is something that feels bigger than kindness.  A grass roots offering…right to the recipient…no overhead…no receipt or record…just kindness from the heart.

An act of good will from the best part of our humanity. 

On the receiving end, I find myself in disbelief…are we worthy of this kind of charity?  Now, I know that I am worthy of goodness and love.  I believe that what we put out, we get in return…although we don’t give or do ever anticipating that we would need it.  In my disbelief, I find myself slipping into old thinking habits, judging the severity of what we are going through compared to other families.  And I just don’t see us ranking all that high on the suffering scale.  But if I am being really honest, it is likely because we have been buffered by immeasurable kindness right from the beginning.  I can’t help but wonder where would we be right now without kindness? 

If I am going to be brutally honest, I am suffering.

That is tough to admit.

The simple tasks that I once multi-tasked, blindfolded while juggling eggs on a unicycle…I cannot do right now. 

Today, I showered.  That’s it.  That’s all. I showered.  In a 24 hour period that is the only action I was able to accomplish.  I didn’t read.  I didn’t watch Netflix.  I didn’t open the mail. I exerted zero brainpower. I slept, I rested, I ate…it may sound like a dream…and a few months ago, I probably would have joked about how I would love downtime like this. But this is no way to live.  This is suffering.  Stuck in a place with little control to change the situation, where pain lurks and loss is evident.

I keep reminding myself that this is an experience.  I can have this experience willingly or I can have this experience kicking and screaming….but no matter what, I am having this experience.

So when I step into willingness to have this experience and let it be what it is…I realize that it doesn’t matter what I “think” my worth is.  We are all humans…created of the same grit. No one is more superior than the other, we are all just figuring life out as we go.  There is no scale of suffering that we are measured against. Everyone suffers at some point in their lives, and it looks different for each of us.  I think what matters to me is that we are able to recognize when someone else is suffering, when their presence or their story or their love hits us in the feels, we do something about it.  This has been an incredible experience for our children and for us, to be recipients of blind kindness, anonymous giving and unconditional good will.

Side note – I think it best, if I flip my thinking from “I am suffering” to “I am experiencing suffering”.  Surely this isn’t a state that I want to attach to by claiming that it is mine and I do not want this to define me…and if I am simply experiencing it then this state cannot last forever…the one constant in life is that it is always changing. I will work on this – I believe the language we use in our internal conversations is very important in creating our outward reality.

To all those whom we have never met, thank you for being a part of our journey.  Thank you for being an example to our children, and for honoring your heart and the call to give so that we too, as people and parents can learn this art of grass roots good will.

Another aspect of kindness that we have experienced is where sufferers themselves have gone out of their way to support us.  Let me give you an example:

Laurie is a friend of mine.  When we met several years ago we hit it off…like kindred spirits.  So many things in common, but what drew me to her was her warmth, realness and her humor.  She tells the funniest stories, isn’t afraid to be vulnerable, is creative, a wonderful wife, woman, mother and grandmother.  And as it turns out, her mom and Tim’s Nana were sisters.  *Bragging rights here, because it really is an honor to be her friend.*  She was diagnosed just over 2 years ago with an aggressive form of breast cancer.  She has been an inspiration through all of it…the surgeries, radiation, chemo, radiation, chemo, radiation…and now more chemo.  The cancer has metastasized and still she wages on, positively, one step at a time, enjoying each moment as it unfolds. Even on the rough days, she finds something to smile about. Unable to drive herself anymore, her son brought her by for a visit a couple weeks ago.

So that she could bring me homemade brownies.

And another time.  To bring me Tic-Tacs.

This is not kindness.  This is bigger than kindness.  This is unconditional love.  This is grace.  This is servant leadership.  I am so thankful for this lesson…here’s why I am so excited:  Suffering met suffering with dignity, grace and love. There was no competition between our suffering, and we both understand that this is just something we are experiencing. Here she is, enduring torturous treatments, contemplating her own mortality… and making me brownies!  How many of us, faced with what she is facing, would use up the little energy we have in a day to make brownies for someone else?


This example of unconditional love, of giving expecting nothing in return, of grace…is exactly what the world needs more of.  It is really easy to get caught up in the busy-ness of life, in our routines, in all the chaos or suffering within our own lives and become self-centered.  It is so important to me, going forward that I honor myself with the love and nurturing that I need, but equally important to follow Laurie’s example of unconditional love and to serve others along the way.  What a beautiful gift she has given my family.

And the brownies were delicious too.

I only have 3 more days of Miltefosine left.  I am almost there.  And I am going to make the most of this experience…and keep learning. The journey isn’t over yet.

Xo Juli



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