June 23, 2019

The Best Seat in the House

 Journal Entry #40

You would think that after 39 journal entries, I would run out of things to process, talk about or write.  But no.  Life moves at lightning speed…even when I am not.

I put my cane down today.

That’s a big deal.  It was becoming a crutch and truthfully, I don’t need it all the time anymore.  When I am tired or may have a big day ahead, there is comfort knowing it is there to support me should I need it.  As an RMT, I am keenly aware that my gait and posture have been affected by the limping and inflammation in my left foot.  I am going to need some spinal realignment soon.

I put make-up on today.

It’s the first time in months that I put a full face on.  And it felt good to blow dry my hair and add layers of mascara.  When I looked in the mirror after I finished primping, I looked healthy and I sighed in relief for I didn’t see chemo staring back at me.

I drove a car today.

For the first time since late April, I got behind the wheel. I had somewhere important to go and DAMN didn’t it feel so good to reclaim some of my independence!?  Driving is like riding a bike…thank goodness!

Three big steps towards healing happened today.  And I have an unsuspecting couple to thank for it…

Congratulations Nick and Sara on your beautiful wedding today!

Through this whole Leishmaniasis journey, I have found that setting little goals for myself has been very helpful in moving me forward. When I am feeling sick, it is easy to get stuck in it.  When I am looking forward or working towards something, it makes the journey easier. The goals are not expectations, there is no pressure and no one knows but me that I have set the goal.  They have been little things like, emailing a particular friend, conserving enough Tic Tacs to be able to go to Canyon’s baseball game or doing the dishes.  The bigger goal this week, which required some assistance from others, was to officiate a wedding today AND to drive myself there.  Of course, I also knew that I wouldn’t be standing up there, in front of 200 guests holding my ipad, the microphone AND my cane since I clearly don’t have 3 hands.

We all know which one had to go.

The rehearsal was Thursday night and Vicky escorted me to the venue at King Valley Golf Club.  Everything went smoothly despite the fatigue and cramping that I was experiencing post IV therapy the same day.  It was a big wedding party – 18 attendants in all to practice getting up and down the aisle in an organized fashion.  I won’t lie, the rehearsal tuckered me out.  I was thankful that Vicky was able to do the drive for me and that I had her support to pull it off.  It generated some fear within me that I wouldn’t be ready and that would mean letting down this special couple. I prayed that I would be ready, prayed that my body would support me, prayed that their day would be beautiful and memorable and perfect for them.

Today was beautiful.  Did you notice the depth of blue the sky was?  How, even though the flowers are all blooming so late that there seems to be even more color abound between the still flowering trees and the gardens? The world was brighter today.

A perfect day to celebrate love.

Typically, I perform 23+ Wedding Ceremonies a season.  I also offer Baptisms, Funerals, Naming Ceremonies and other private milestone celebrations.  After years of catering weddings, decorating weddings and even planning weddings, I finally found the “best seat in the house.”  That is what my Grandma Hernigle called it.  She was a Justice of the Peace in New York State and married over 1000 couples in her years of service…all for free. She never accepted a penny. She felt that publicly professed love was a gift to the world and her gift to the world was facilitating that to happen.  She was a remarkable woman.  Anyway, we are into the thick of wedding season now, and I had had to find replacements for the May weddings that I had booked…but this one, my heart didn’t want to let go.  Mostly because Cathy and Al (parents of the groom) are family friends and curling buddies, but also because I wanted a goal…a beacon to move me forward.  It would mean that I would have to push myself a little to be ready, and be able to trust my body…a body that hadn’t yet proven itself trustworthy.  But here’s the thing:

Diapers can’t be worn with spanx.

I was nervous up there, in the hot sun, sweating with the rest of the wedding party.  The women were stunning in their soft pink dresses and the men were sharp in their grey suits and pink ties.  When Nick saw Sara start to walk down the aisle, I heard his breath hitch and saw the tear that marked a moment of both love and gratitude and I knew that I made the right decision to be there.  All my nerves settled, my body relaxed and my breath calmed.  And as they said “I will” and “I do”, I believed them.  These two are in it forever.  Then, as I looked out to their village (200 guests), I saw how truly blessed they are.

We all have a village. 

Even when we are feeling lonely, when we go through tough stuff that we think others won’t understand, or can’t understand because they haven’t gone through it themselves…we still have our people.  The brain may try to trick us, to tell us that we are wrong, that we are alone and that no one cares…but it simply isn’t true.  Someone always cares.  Someone is always there.  I’m going through a tough time right now, and I have an amazing village surrounding me.  Nick and Sara are going through a joyous time right now, and they have an amazing village surrounding them.  You see? Good or bad, happy or sad, hard or easy…the village is always there.


I was fortunate to bear witness to love today.  To have the best seat in the house.  To find independence by driving myself there.  To look amazing doing it.  To hobble in my flats subtly without a cane.  To feel the sunshine on my skin.  To offer a service that is meaningful, memorable and purposeful.  To contribute to the world in a way that mattered.

I mattered.

One of the biggest struggles with being laid up for me has been NOT contributing to society.  NOT feeling purposeful because I wasn’t doing things that mattered.  Feeling like I have been taking more from the world than giving the world.  As I was preparing to leave the ceremony, a few guests stopped me.  This isn’t unusual as many like to say thank you or comment on the ceremony, compliment it or on very rare occasions, to let me know when I screwed up somehow.

Today was different.

I was stopped because I had been recognized as the girl with the bugs…the one that is writing this blog…the one that, through my writing had impacted their life in a way that mattered…and they wanted to say “Thank You” for the example of vulnerability and to let me know that they were drawing strength from my words to help them through a difficult thing in their own life.

Lightbulb moment of awareness! All this time, I have been writing this blog for myself to help with my own healing and come to find out its purpose has been bigger than my intention.  Turns out, all this time of NOT feeling purposeful because I am NOT contributing to society, that I actually have been.

I just didn’t know it.

Today, it felt good, I mean, really good, to be in service of Nick and Sara and to celebrate with them the love that they have discovered in each other.

As I fall into bed tonight, I am exhausted but I am more proud.  I am proud of myself for persevering the week and all the little goals it took to get through this day.  I am proud of myself for getting my feet wet again with what I love and also listening to my body when it needed to sit and rest and hydrate before the drive home.  Today gave me hope that I will be able to find a new balance between work, service, family and health.  I just have to listen as the spiritual, mental, emotional and physical parts of myself talk to one another, translate their signals and then I need to learn to make decisions in support of those messages.  It might sound like a daunting task, but today I proved to myself that it is possible.

Life moved at lightning speed today and I did not.  I moved at my speed.  And I am good with that.  Happy with it.  Proud of it.

And that is a beautiful feeling.

Xo Juli

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