Timing is Everything...

I’ve been away for awhile. But it’s intentional. I’ve been scared to share. Ive had hundreds of stories fill my mind. All of them felt important, only I wasn’t sure why. I have shared stories I wasn’t sure about before, but this felt different.

I continued to pray to the Holy Spirit, for at the ability to discern. And then I just kept waiting, and waiting… and with that came some darkness. Because pain without purpose is nearly unbearable.

I can endure so much pain that it would go undetected by most. And while I may not be the most bubbly person you have ever met, I hide more symptoms than you will ever know. And I learned how to do this at an early age.

So why all the fear?

My treatment will be coming to an end this Fall. I should be elated, and I am. Only I remember the last time my treatment ended. The effects it had on my body were permanent. So while I was expected to feel good, I didn’t.

It made me feel ashamed. And I have lived that shame in every breath for nearly 30 years.

But

This isn’t a sad story. It’s an awakening.

The Holy Spirit let me know a few things I haven’t known before today… things I’ve wrestled with, but never knew.

That is, while my body doesn’t have a diagnosis for late effects, I don’t have to feel ashamed.

Blood results are blood results. And whether they complete a diagnosis doesn’t matter, whether people understand them doesn’t matter, whether I understand them doesn’t matter.

My case was brought up for the tumor board a year ago. How could they treat someone for cancer who had already had so much collateral damage to the body. Would the risk of the treatment outweigh the risk of the cancer reoccurring?

I am going to say this because it’s the part of my story I never share. Because in my heart of hearts I know we all do our best. That said, 30 years ago, I did not receive any advice on self care after cancer. Zero. I was given a book on everything that could go wrong with my body due to the radiation and chemo I received, but that was 15 years later. I still didn’t receive any information on how to self-care.

LAST THURSDAY EVERYTHING CHANGED, only I didn’t realize it till today.

Of all things, I was at an Open House for my daughter’s school. Sister explained the number one goal, her mission - the school’s mission was to instill happiness in our children. i felt chills of the Holy Spirit encase my body. I looked around the room to see if anyone else was reacting to this overwhelming sensation.

I began to take notes. I almost stopped, because I felt like a nerd. No one else near me was taking notes. I felt a quiet voice tell me that it didn’t matter what anyone else was thinking.

I felt myself wishing that was also my goal for myself. AND I realized it could be.

So instead of praying to heal my body, I began to pray for happiness…

AND LIKE I SAID, EVERYTHING CHANGED.

Yes it is a mini-miracle, but not magic. Life is life and I still don’t know what is coming.

BUT LET ME SUMMARIZE the lessons I learned since praying for happiness.

• My body is sick, not with cancer but - I have high cholesterol, high blood pressure, hormone imbalance, liver dysfunction, hypothyroidism, vocal cord dysfunction, chronic fatigue, chronic pain, etc. My cardiologist has told me I have the nervous system of a ninety year old.

• When your body is sick - you don’t make it work any harder. Until now, no doctor has ever told me to take care of myself.

• When my doctor doesn’t have the answer, he finds it for me.

• While research is still inconclusive in terms of the “best” lifestyle diet, I am told that for me - it is probably best to limit dairy, meat, sugar and alcohol.

This is probably common sense for most people. I was only 12 after my first battle with cancer. If I did anything different from my peers I heard things like I thought I was special, even adults made comments about feeling entitled (not when I was a child, but recently).

Shame makes you believe that the bad things people say about you (as well as the things they don’t say) are true.

Like I’ve said in the past, the first thing I said after being diagnosed with Leukemia at age 9 was “what did I do wrong?” And the first thing that I felt was shame.

No one has ever had to convince me of my failures… I can usually add to it.

This is the story I haven’t written, it’s the missing piece.

HAPPINESS.

I’ve always wanted it. I’ve certainly felt it, but shame doesn’t let you feel like you deserve it.

And kind of like when you tell and angry 5 year old to calm down - telling a person with shame to just be happy - well it makes them dive further into shame.

If I am a grateful person, and I like to think I am, then I SHOULD be happy.

And if I think I’m happy but I don’t feel happy - then what?

THIS IS WHERE THE WHOLE TOPIC OF SHAME AND TRAUMA GROWTH BEGINS…. and also where I definitely need to reference Brené Brown for opening my eyes to the significance of shame.

IN CONCLUSION…

Am I still a little worried about the end of treatment, YES.

BUT I am not going to be ashamed of what I need to do to take care of myself.

And that makes me happy.

And being happy makes me a better role model for my daughter.

And that makes me happy.

Amen.

Spiritual Affirmation…

I knew I needed to surrender, but it’s just so hard to let go.

It can feel like weakness, it can feel like laziness, it can feel like giving up.

I even overthink my surrender.

But I wasn’t born this way.

So here it is.

I was blessed to be able to reconnect with a dear friend this week. And while we haven’t seen each other in many years - the timing was divine intervention.

Not only is she my tribe - she is a breath that my soul recognizes.

So let me explain how reconnected I am today… and how I learned about surrender in less than 72 hours. It’s not even about the time. It’s that it wasn’t the challenging, effortful event I thought it needed to be. I just had to stop asking questions.

I’ve always been very connected to the Holy Spirit. Always. And then, sometime in high school, I sought some advice from a spiritual counselor. I was warned to be careful - that what I think is good… could actually be evil and that I needed to discern.

I began to doubt this spiritual connection.

And then, 9 years ago, I was ready to give birth to my baby- but she was only 17 weeks gestation.

My water broke on Mother’s day. I knew that I couldn’t prevent the labor. I knew that she was going to come too soon. I remember pleading with the Holy Spirit… that if this was going to happen - He needed to make His presence known.

She was born at 1:23. And I knew the entire Trinity was with me.

Once I understood this language, it began to develop. It was like our own little secret code. I don’t notice all numbers all the time - but, at times, I will experience chills and even feel like someone is looking at me. It’s like that, it’s a sudden knowing that I need to pay attention.

And even with this absolutely beautiful connection with the Holy Spirit… I still experience that doubt, I still resist surrender - because I’m human.

But

After weeks in a spiritual funk… my friend, my tribe shows up.

And then this happens.

We are walking outside, enjoying the not quite 90 degree weather. Hey it’s better than last week.

We are talking, and I get that feeling. I glance to the right and there is an enormous number seven in my vision.

It was probably the 5th number seven I experienced that morning!

So with no filter at all - I shout,

OMG it’s another number seven!

I quickly realize that I probably don’t make any sense. I began to explain that the Holy Spirit converses with me in numbers…

AND that I kept seeing really prominent 7’s all morning.

Then that really creepy doubt shows up… and in my mind I’m thinking - why did you say that? She is going to think I’m crazy.

What do you do when you think someone may think you’re crazy?

Well, if you are an over thinker, like me, you add more crazy. Yep, just pile that s*#^ on.

I tell her about my eldest being born at 1:23.

I will keep spelling this out for you, but after you add more crazy, you don’t decrease your self-doubt.

At this point, we are approaching the computerized meter box -

I’m feeling anxious about my disclosure -

until I read the time on the box…

1:23

Needless to say, trust yourself - trust your intuition, but don’t take it from me.

Even after this affirmation, I found myself questioning my experience.

I am still playing the story from high school, what if this is all somehow bad?

And then I get that feeling again, I sense something, and I look up - AND

its 3:33.

Now, finally, there is something that I know.

I DON’T HAVE TO KNOW.

It’s no wonder we are supposed to have a child like mind. I didn’t question why I had cancer as a child, I didn’t need to know why I lost my hair or had to suffer.

We are in full acceptance as children.

I don’t have to be some kind of spiritual mind reader. I don’t need to understand why the Holy Spirit is with me or what divine purpose I have.

I want to know, I would like to know, but I don’t need to know.

And that is my surrender.

Amen.

Here it Goes...

I am a poet…

In the way I dress,

In the way I move,

In the way I write, and -

In the way I express…

because words are just words until they connect, until they breathe what they are to be.

My words, most recently, are connecting to fear.

Specifically, to the end of my treatment.

I know cancer, and I understand it.

While treatment may be an uphill battle, the end of treatment is like jumping off a cliff.

And just like a word before it’s connected to purpose…I too, felt lost.

Until the image changed for me…

Maybe standing at the edge of a cliff is not a risk -

But rather an opportunity - to reinvent, to rediscover, and to reintroduce a connected self.

Because the jump itself isn’t scary as long as you know you have people when you land.

We all have our words, our cliffs, and our connections.

In the past -

I was always moving in and out of time, thinking if cancer couldn’t find me, it couldn’t have me.

But, not knowing yourself doesn’t make you invisible, it just makes you lonely.

In order to connect, you have to BE.

This is an adventure.

And this time, when I jump, I’m not going to close my eyes.

I’m not going to miss one more thing.

I love this season, cause it’s right where I’m supposed to be.

And it’s time to tell our stories - every layer.

I’m the mama bear, poet, fashionista, gentle breathing self that I am.

And I hope, more than anything - that as I am learning to breathe -

I evoke compassion and connection. Otherwise it’s all for nothing.

And that is a tragic poem.

So let this be my song, my intention, and my prayer…

Live life, no more hiding.

Amen

Spiritual Warrior

I’m like a spiritual warrior or shaman or something. Maybe a medicine woman. I’m not even sure. 

But in each dream I’m walking down a path. 

I’m robed in flesh color linens. I have a linen satchel in a deeper fleshy tone. It’s over my shoulder and I’m very aware of it’s presence. 

It’s everything.

Every tear, sorrow and suffering.  

I keep walking till I am face to face with Jesus.

Yes that’s right. Jesus Christ. 

[I’m not sure how true it is... but I’ve always heard that when a person speaks to you in your dream - then you are dreaming. If the person does not speak, then it’s a visitation?]

Either way. Jesus looks at me and says nothing. 

Still, I know that He wants me to open my satchel.

I am so ready for this sacred moment. I am ready to release all that is hidden within.

But it’s empty.

I wanted Him to know my pain, my suffering, my collection of woes. 

It was all gone. All of it.

But in His gaze I realized they were never there.

It didn’t make the sorrow disappear. It just changed it. 

It changed me. 

I can never own nor carry sorrow. 

He lifts it every time. 

So I wrap up my satchel. 

And I just keep walking. 

Cause it’s the next right step. 

And that’s all I know. 

Amen.

It Wasn't a Good Day to Wear Mascara....

I really did try.

And Prednisone has a way of making you feel good. It’s just a cover. Nevertheless, I felt like making an effort.

It was a short dose… to help me breathe. So I came down fast and hard.

Still.

It started as a good day.

Then I got my liver results.

Which should have made me happy cause - no cancer.

And even better news. Minimal scarring. And even better. Non alcoholic fatty liver syndrome.

So I didn’t ruin my health with that glass of wine. 

But then something else happened. 

I got really, really angry.

Like ugly cry angry.

And I didn’t even want to cry. And I felt so stupid. 

So what then? I asked. 

I just hit the jackpot of weird system failures. It’s not my fault, but deal with it anyway???

But before I could actually utter these words…

He hugged me.  

He said I hate this. All of it…

and none of it’s your fault. You are doing everything right. 

There is absolutely no reason for you to have metabolic disorder. I can’t explain it and I don’t want to cop out and say it’s hereditary cause it still doesn’t make sense.  

I just hate it he said.  

And then he said something else. 

But it’s going to be okay. We’re going to figure it out. 

And to date… he has cared more and done more for me in finding answers than anyone else on this health care journey. He doesn’t owe me any of this. He is treating breast cancer. Most of this comes from when I was nine. He doesn’t always have the answer, but he never leaves me out in the dark.

It’s going to be okay.

Ugly mascara and all.

ps. If I know anyone in the makeup industry can we work on this concept? Ugly Mascara. I’m not just talking waterproof. I’m talking soul mascara… that gift you want to give someone for the day that cry comes. Cause it will come…. but it’s all going to be okay.

7.17....

I wrote this yesterday… but then I was too afraid to post it. Yesterday was a year since my surgery. Is that a big deal? I’m not sure. It feels like it.

But

Maybe it’s also because I like the number. 7.17. I am pretty sure I had two options for the date. My surgeon said she would let me know but I really pushed for 7.17.

It just felt right.

SO

why am I not writing… maybe you have noticed and maybe you haven’t.

I’m suffocating.

Literally. 

I’m suffocating. Like legit no air in or out.

Scariest. experience. ever.

I spent the night in the ER trying to figure out why… and most logical conclusion - is a collapsed/spasming vocal cord.

I didn’t know that was a thing.

It is.

Now let’s go metaphysical… spiritual… into prayer mode.

Why am I choking on my own voice?

REALLY GOD? REALLY???

The voice I’m afraid to use is now a matter of life or death?

OKAY I am being a little dramatic, but no air eventually means big problem.  

My vocal cords are choking me!

At one point, every hour on the hour. 

This is real. Life flashing before my eyes real…. saying goodbye while praying real. 

God gave me a voice. And now I’m suffocating in silence. 

These scars of silence are just strands of a story...

I’m on countless meds to prevent me from suffocating. I am still having events but I’m learning to relax into it -until we find a more permanent healing. 

And how ironic.

This voice would rather silence me than to silence itself.

Amen. 

Room 8...

I always write in real time.

Three weeks ago I began to write this post… only I didn’t -

because I wasn’t sure that I was meant to.

And this week… exactly three weeks later - I was sent to the same room.

ROOM 8.

This the room where I received my breast cancer prognosis and treatment plan.

… I hadn’t been in that room since October.

I wanted to write about this three weeks ago, but I was afraid.

It’s no wonder I was given another chance today.

there it was - just waiting for me, that room - that place.

I wasn’t bothered mentally, but I felt my body resist the urge to enter the threshold of the doorway.

I just “noticed.”

It resonated like bells clinging until all I felt, heard and witnessed was a numbing silence.

AND

the room faded in and out with a breath of its own -

it echoed. 

My doctor moved his lips.

I’m breathing. I was holding my breath but now I’m breathing. 

This silence is loud. So loud I can barely take it. It’s piercing. 

SPACE

I need some space. 

And in taking in this story. In knowing, I am, I can hear. 

It’s ROOM 8. It’s looks like every other room. Except it’s ROOM 8.

My body remembers something that my mind finds senseless. 

My mind tells me it’s just a number. My mind tells me that it has an exam table and two chairs…

like every other room. 

But my body argues back. It remembers carefully choosing which of the two chairs to sit in. It remembers trying to sit back, but not too relaxed... and leaning forward, but not too forward. It remembers not knowing where to put my purse...

It remembers the shrilling silence, the unease, the commencement of a journey.

It remembers ROOM 8. And it has a story. 

AND THAT STORY… is it real?

It is to my body.

We are living stories. We are the conversation… our bodies “keep the score,” as Bessel van der Kolk writes.

I “showed up” in ROOM 8.

I haven’t read Rising Strong (yet) but its about to join the conversation of the other 6 or 7 books I am reading.

I know now, why I have no known voice for this blog… because that is somewhat of an outcome, which I don’t have, just an aim.

Brené Brown shares that we shouldn’t go to the place of vulnerability if we have not worked through the hurt… because our rise is never dependent on other people.

I “notice” that I have taken a million paths to this same place. And once I am here, I start over.

I make a new path to the same place.

ROOM 8 is my place. WAS MY PLACE.

It’s been with me my whole life. I can talk to you about every ROOM 8 I have ever occupied… and it’s a lot.

Some writers share stories of world travel - my travels are much closer to home.

I’m aiming for a new horizon.

There isn’t a ROOM 8, though I know this old friend will find a way to visit on occasion. That’s okay. When it does, I will assure it that I’m just fine.

Brenè (is it okay to use her first name?), shares that if you show up you are going to get your a## kicked.

I believe that. It’s happened. But at least now, I know that isn't failure.

It’s all part of the RISE.

AMEN.

I'm Not Even Sure....

I am mostly not sure of a lot of things, in particular, I am not even sure of my balance between strength and surrender.

I wake up in the morning and I want to peel myself from this chemo body and face….

But then I feel like I have let the weakness in.

It’s like an invitation for ingratitude. I summon strength in the form of prayer and remind myself, cliché as it may be, that this too shall pass. Maybe.

While this strength carries me through the torture of being seen, mostly by myself -

I find that once the sun continues to rise - I am still battling the collapse of fatigue. In recognizing that such exhaustion is not unique to my experience, I attempt to push forward into the break of day with a very hesitant plan of action with a fairly strong cup of coffee.

As fatigue has its own strength, and the coffee serves more as comfort than aid, I find that the whole morning feels all too familiar.

And then I call my own hope and faith into question.

Isn’t GRACE GIRL all about believing in miracles, and opening oneself to the “everyday” impossible?

Then how, on this very earth, could I begin to believe I will not feel reprieve?

To have more desires and dreams than one’s own heart can hold, with little to no energy, is a plague for which I have no name.

And… in case you think I have let myself wallow in any way… I assure you that is nearly impossible in our age of no excuses.

And also trust me when I say I think that is highly important to remember.

Because when I think of what some people are going through - and their fight and their ambition, of course they found a way. They never let circumstances dictate their aim, of course, they could not control the outcome - but they could set the course.

But then I wonder… is it possible, and could it be -

That GRACE GIRL is also here to remind us, that some action isn’t action at all. Maybe our greatest works can come from being still in God.

Sometimes it’s checklists…

Sometimes it’s goals…

but sometimes…

Sometimes the pain and fatigue isn’t a falling down.

It’s peace.

I tend to be hyper focused on the symptoms for which I cannot find relief… for which I cannot feel peace.

For 25+ years I have refused to give up, surrender or accept them. I want to feel good. I want to get rid of this hard basketball stomach that rests below my skin. I want a doctor who will assign it as a puzzle.

I want to be free from it.

AND

That may never happen. For several reasons. But the point is - I’m not even sure.

And that’s okay.

We all have this balance to tend to - what am I battling and how long till I find acceptance and peace?

Will feeling at peace bring acceptance?

I’m not even sure.

Will surrender bring healing? I’ve tried this approach in the past.

I’m not even sure.

I don’t have any answers…

So Holy Spirit… my trust is in you.

Amen.

All My Love...

I always say this story isn’t mine… and tonight is the perfect example.

This story…. it’s not even close to mine. Because (just pause).

I live in a world with such goodness that I can hardly breathe. I am with friends whose kindness is beyond.

Being grateful for friendship like this - it’s like saying thank you for the stars. 

Not even close to enough. 

It’s life changing. And in all the events of my life - this is the one. 

Yes. This is the one.

Cause who knew that self healing doesn’t come from the self at all. 

Because tonight I realize... it’s recognizing the goodness all around you. The unconditional, amazing love pouring into your life - that’s the healing. 

Do you know what that conduit actually feels like?

I do. 

It’s chills and tears. It’s a lump swelling within your throat. It’s waves of pins and needles in your belly... an ebb and flow pattern in your mind. It’s an overwhelming warmth in your heart that may just burst. 

It touches you like a miracle. It holds you and moves you and breathes you into existence - cause when all you felt was loss, and all you knew was grief...

They were planting seeds for a paradise you couldn’t see in your wildest dreams. 

And when you woke. 

When you believed. 

You stepped into this infinite space of infinite goodness. 

Something you didn’t imagine you could feel here. 

And yet. 

Yet. 

These friends, these angels, never let you go. 

And when you let yourself feel it. You realize life will never be the same. 

AMEN.

5 songs, 21 minutes

Let’s just go there.

My eldest daughter would turn 11 years old in less than one month, on May 21st.

I see 521 when she is near.

It’s how she communicates with me.

In looking at my playlist, while contemplating this post - I saw 5 songs, 21 minutes.

So here goes.

I don’t like cancer.

But then, it blessed me with an awareness of the miraculous.

Some experiences take you to your edge. 

You don’t just feel the divine.

You touch it. 

And then, pink is no longer pink. But you don’t have the language to describe that. 

Still, it’s never too late to learn a new language.

You can’t try too many times.

I know that I have an infinity of tries in my heart. 

One thing I am trying… is giving myself a little credit, a little validity.

It’s so easy to feel worthless.

It’s so challenging, waiting for that moment, for your second or third chance at life to make sense.

But then I realized something today. God has already used my life to help others.

When my friends and I battled cancer in the late 90s ... we were shaping treatment for the future. 

They had not realized (yet) that giving a patient a peppermint after chemo may negate the hatred of all food. And that, associating the peppermint with vomiting - rather than all food, would help significantly. I was part of that research. We were that gang of patients battling before miracle drugs. 

I was the first in our clinic to have a Child Life Specialist work with calming my anxiety before a procedure. After seeing how well it worked it became regular practice in the clinic. While I was ashamed of my anxiety, God was using it to show the spinal taps could be done another way. It made it easier on my mind, it helped my team, and I imagine it was much easier on my body as well.

We didn’t have pretty rooms, calming decor, or cute hospital pajamas. I like to imagine some of our ideas developed into the manifestations that currently tell the story of childhood cancer. We spent hours decorating those rooms with our imagination. In a time without i pads, smart phones, or even televisions in treatment rooms - we created, in any way we could.

My actual bone marrow transplant was experimental. Yeah. Every single function of my body and mind was measured. Every single measurement they could take was given a pre and post test. 

Every organ, every breath… my sight, my hearing… my walking gate… my personality… even my ability to copy parallelograms  - it was all recorded. Every trace of me. It was all recorded. 

All who came before us paved that possibility for us, and then we then paved a little more of the route for others.

5 songs, 21 minutes.

Most of the time we will never understand our significance, if any - or not till after the fact.

But then I think, maybe I spend too much time trying to discern my mission, when maybe, it’s already happening.

I didn’t do anything to be part of life-saving research. I was just present. I just showed up.

So… maybe God is doing something with me right now. Maybe I don’t know what it is.

Maybe I am just supposed to show up.

Be Present.

Maybe?

Amen.

Being Here...

I’ve been gone for awhile… like this voice. And it’s not because I didn’t have anything to say. It’s just that every word took more courage than the next. Its just that I had to fight like crazy just to keep myself engaged in this dialog.

Why?

Because of non-being.

Exactly what it sounds like. Moments of non-being. It’s a concept I learned, or rather practiced for survival. It also surfaces in exhaustion. I don’t mean slight fatigue, more like debilitating, paralyzing exhaustion.

And

in these moments of non-being, there is no center, no self, and certainly no sense of here.

So while I experience the miraculous everyday… some times I need a little extra help, like right now. In this moment of being. Maybe I take the medicine I am allowed as needed for fatigue, maybe right now it’s needed.

So i can be here, in this moment of being.

Because there is so much I am ready to address… and maybe I’ve already addressed it, rather am addressing it.

If I can validate my own experience, then what other approval do I need? What is there to fear?

There is no failing in authenticity.

True, there could be pain, maybe. There could be joy, likely.

Either way this voice isn’t really mine anyway.

It’s a collective in a conduit of faith.

Just some thoughts on being here….

Amen.

Kaleidoscope

Last Thursday… I managed to miss an appointment by a day, arrive for an appointment that didn’t exist, and wait for an appointment for which I was two weeks early.

Now.

I didn’t question any of these scheduled appointments as I was quite sure I was right where I needed to be.

Only I wasn’t.

And a week later I am still thinking about it.

Oh sure there is a message of time and what it means… Only I’m not sure if it’s any of that.

Chemo brain for sure. But it did get me thinking.

We cannot be PRESENT during SURVIVAL. (okay you can, but mostly we do not respond in our presence but rather we react in our presence).

It’s not about trying harder or closing our eyes for better focus.

It’s FLUX.

BEST WORD EVER.

AND

It quite possibly saved my life.

I studied it as a philosophy in a literature class my sophomore year of college.

I finally had PERMISSION.

To be and not to be - simultaneously… because that is what survival and healing feels like.

But with flux… as with writing, it is normal and even admiral to be both present and non-present.

Like a kaleidoscope, the patterns flow in and out- just as you cannot step into the same river twice.

Had I twisted that lens just a little, I may have been exactly where I needed to be for those appointments, but I was in non-presence. That was okay too. Maybe not ideal, but certainly not life or death…

and…

Perhaps that is the difference between surviving and healing.

The kaleidoscope keeps turning… not sure what is next.

What is my mission, purpose… intention in life?

Or

Right now, is it this?

Amen.

Not Today....

More specifically NOT TODAY Satan… although that’s what it feels like in my brain… my brain on steroids.

I don’t always like talking about the day to day ritual of “fighting cancer” or “healing” or whatever you want to call it, but then again, to deny the everyday is to ignore the moment and the actual place of transcendence.

I never want anyone to have to go in the mud with me to experience the lotus, but then again, it may be difficult to understand the lotus without the mud.

I AM BACK ON STEROIDS… my body is too inflamed without them, and the pain meds do not work without them.

So how to make peace with the inevitable?

The worst part is being seen for something you aren’t. You are aware enough to know that you aren’t acting like yourself and yet “effected” enough not to be yourself.

No one likes me when I am on steroids. I get it. I am not myself.

Darker, sadder, meaner, confused… I don’t like myself all the much. I get it.

I don’t like talking about this… but I also believe St. Ignatius had it right when he said that SATAN doesn’t like us to bring things to the light.

AND I WANT TO BRING THIS TO THE LIGHT.

Right now, I am not my best self.

Right now, I am suffering more without steroids.

Right now, I am trying to hide this disappointment.

Right now, I am failing.

As a highly sensitive person, I am even more sensitive to medication. I am so super, highly sensitive to medicine that even this incredibly low dose of steroids makes me have to say… NOT TODAY SATAN.

CAUSE I HAVE GOD.

I KNOW WHO I AM.

THIS WILL PASS.

Whatever your darkness, whatever your pain, whatever your struggle… just bring it to the light.

I won’t always be on steroids.

But I will always have this soul. And I am trying so hard to keep it present in the light.

Because I will be likable again. I know who I am.

God protect me in this battle.

I’m coming to the light.

Amen.

There's Always Been a Light...

All things simple, all things divine.

Maybe that’s why I’m being drawn to all things textured with sacred thread… and by that - I mean it’s my every thought.

Yes literally being drawn.

Cause IN MY SOUL it’s an unyielding, unapologetic call for my humanity to actually feel the juxtaposition of breath meets life rather than life meets breath.

It’s an insatiable, time lapsing, soul sharing, winding path walking, aside – poetry

I’m trying to remember life before I was so scared of it. Before I held my breath, before I shut my eyes, before I numbed my heart.

It’s my ever white, silence… slow motion, free-running, earth shattering, scream bound passion for life.

IT’S A STORY.

And that’s what makes it exist.

Cause words don’t make a story.

LIFE DOES.

Amen

40 Days... My Plan

So I had this plan right… like for Lent… or like my for Life…

RIGHT. SO…

I am in a Bible study group… and we meet on Tuesdays… and we wanted to share our “plans” for lent.

Now it’s not like I didn’t have a long time to reflect and pray on this... AND I DID.

Wholeheartedly.

Monday night I still didn’t have an answer. So my final prayer went from patient - to something more like this.

Okay God, I feel really lazy and a little bit like a loser, because I don’t accomplish anything. Everyone else my age has or is making something of themselves… everyone but me that is. So for Lent I will give up things in order to fulfill my sacrifices, but I am also going to get stuff done. Like a lot. So I need help with that… what do you think?

silence… silence… silence…

“I will heal your heart”

Wait what?

“I will heal your heart”

K. Not really sure how that makes a good Lent for me… it’s supposed to involve a lot of suffering and angst. You know the drill. So….

“I will heal your heart”

WEDNESDAY/ ASH WEDNESDAY

Needless to say, the next day I shared MY PLAN.

Like I am going to go to bible study and say… oh what am I doing for lent… well I am letting God heal my heart… I don’t think so.

THURSDAY/ CHEMO DAY

I felt fairly good. So I assumed my counts were good. And I was right.

Only I couldn’t get chemo.

WHY???

Cause Wednesday… yes ASH WEDNESDAY… MY HEART… kept feeling like it was being electrocuted!

AND

As I am supposed to report all symptoms to my doctor… I had to tell him about this.

I also had severe, and I mean severe pain in my neck.

So… he wanted to postpone treatment and give me an echo as well as a 48 hr heart monitor.

BUT I HAD A PLAN FOR LENT… SO THIS COULD NOT DETER ME!

NOPE.

But then I heard it again.

I will heal your heart.

Hmmm, I thought. That may be the case. But I cannot continue to be a nobody. I have faith and I trust you have plans for my future, but a backup couldn’t hurt. (I know… I know… but I am human). I CANNOT BE STOPPED.

AND THEN, IN THE MIDDLE OF THE NIGHT… PAIN IS EVERYWHERE AND I CANNOT MOVE.

I CAN’T EVEN REACH MY PHONE FOR HELP.

So I am trying to figure out how to get up.

First. I apologize to God.

Yes, I can be stopped.

But right now, I need pain meds.

So I roll to my side and let out a blood curdling scream. And then I know that the only way up is through more pain. I take the deepest breath that I can, and decide that the faster I can stand the better it will be. I force myself up in one motion while letting out another scream.

The pain meds my doctor prescribed did nothing. He told me to let him know if this was the case.

The answer… to get back on steroids. Which means I will not look like myself anytime soon. AND. It’s not in my control.

AND EITHER IS MY PLAN FOR LENT.

It is kind of funny when I think about it.

I mean doesn’t God know that Lent started Wednesday?

So why didn’t He give me the plan on time? I had been praying about this way before.

Everyone I know always has a detailed plan for Lent… and for their lives… and mostly they accomplish it.

BUT

I will also say that I have received SO MANY SIGNS for SO MANY THINGS that I DARE NOT MOVE TOWARDS…

because

I DON’T HAVE THE COURAGE…

and yet I do have the strength.

I KNOW THAT MOST PEOPLE COULD NOT MOVE IN OR EVEN LIVE IN THIS PAIN…

and I don’t say that through ego… in fact I only just began to believe it… cause it’s coming from the HS.

SO WHAT AM I DONG FOR LENT… FOR MY LIFE…

Well for right now…

I’M LEARNING TO LISTEN FOR THE WHISPER…

AMEN.

Scars in the Rain

Do you have a heightened sense of your scars in the rain?

I don’t usually give pain my attention, so it takes me awhile to realize I’m tugging at my shirt and wincing. And then I notice that I am feeling a light tracing on my skin. I feel a burning sensation with all sorts of discomfort.

And then I will notice that I am holding my breath.

I will think it’s odd and random.

But then, then I will remember that I’ve had this thought before.

AND

I will remember having this feeling before.

AND

I will go to the window.

And I will see that it’s raining.

Then I will marvel… I will marvel at how my body felt something… a shift in pressure… before it was ever in my conscious mind.

Miraculous.

Amen.

Hold On...

It’s no secret that I love everything prayer involves... I love visualization, meditation, contemplation, music, poetry, creativity, etc. And... today a song entered this sacred prayer space.

I was attempting to leave a place of pain through this prayer when the song began to play.

This song, Hold On, was my personal anthem for at least three years of my chemo treatment. It became my prayer. It revived my soul and it gave me strength. It was the 90s.

I know there’s pain

Why do you lock yourself up in these chains?

No one can change your life except for you…

Just open your heart and mind

Is it really fair to feel this way inside?

Don’t you know?

Don’t you know... things can change

Things will go your way

If you hold on for one more day…

You could sustain

Or are you comfortable with the pain?…

Don’t you think it’s worth your time

To change your mind…

Hold on for one more day cause

it’s gonna go your way…

Every word in this song gave me the strength to just keep going. To just keep believing. And I didn’t even need to live. I just needed one more day. As long as I held on just one day - everything would be okay.

I had my red blood cell t-shirt, like a million trolls, and THIS SONG.

And that was my field of AWARENESS.

Not the cancer, not the chemo, and not the isolation.

AND

I gave my ATTENTION to that awareness.

AND

That awareness grew.

As child I was naturally brave. I didn’t have to focus on my attention so much. I hadn’t “learned” that bad things could happen ... or that “bad things” could repeat themselves.

Today my awareness turned my attention to THIS SONG once again.

There were other things I could have given my awareness to... but then, right then... THIS SONG was the most intriguing.

So my prayer shifted.

I felt the rise and fall in the breath of my poem.

I had less attention for my pain.

The shackles fell with each sigh and I emerged in the presence of prayer... right in the midst of the mystery.

AMEN

Maybe that's Why...

It dawned on me this morning.. that it is so easy to fall without grace.

In fact, I would go as far as to say most of my falls did not involve grace.

But, I have never gotten back up again without it.

Every rise, every single one, involved Grace.

And I have fallen A LOT.

AND.

Maybe that’s why I am so intrigued with grace.

And mostly, in my life, I have felt unworthy of grace… especially when my falls have repetitive patterns. Like how have I not learned this by now? But then grace isn’t earned. And we can never fall too many times or even be underserving of God’s strength and love.

every scar

on my body,

AND

in my heart;

every scar,

it’s a story of this…

of being unbroken

And He will use this story. I give it freely. No more shackles. No more fear. Just this.

Amen.

Shhhh... it's quiet

A voice of silence is a voice itself. And silence is not separation nor is it isolation, though this is a story I told myself AND one that I came to believe.

I have learned, that this silence I experienced, is something other than THIS STORY.

Because in this story, I am lonely. The silence is a space of sheer loneliness. Well, that’s what I thought.

I think we have all experienced seasons of loneliness in our lives. And I am not talking about a lack of family and friends. I am speaking of a disconnect that makes you feel as though you are isolated.

As a child I was often physically isolated due to low counts, hospital stays and finally my bone marrow transplant, But then there was also the disconnect… everything I missed by being gone, or even thought that i missed - it became a reality.

My reality.

Fast forward to now.

I have not been physically isolated other than my own fatigue or exhaustion.

And yet… some of these same feelings began to surface, but why?

I couldn’t figure it out.

And then, I realized I was used to connecting through EGO, the self, the I the ME…

BUT

When I am in this transcendental place the EGO doesn’t exist… or barely exists.

and in this one moment…

MY ENTIRE CHILDHOOD… young adulthood, and every moment leading up to this EXACT MOMENT… made sense.

It made sense.

You cannot help but be close to the angels when so many are praying for you. You cannot help but be close to the Holy Spirit. You move closer to your life source.. to God. You know very well that you need divine intervention.

And in my case, unlike my childhood, this isn’t life or death…

But it is about staying vital, and present, and strong.

I can’t say that I completely understand this silence…

But without EGO at my core… I realize that the contemplative prayer I am always '“trying” to practice is what I’ve actually always known. AND it’s what I experienced so many years ago.

There are as many definitions of contemplation as there are for meditation. And in this story, I am speaking mostly of an effortless silence and connection to the soul - in a prayerful and spiritual state, with your heart.

Suddenly you are there, but you may not even know how or why. You may not remember it all. It’s a place you are meant to go but cannot plan to go. It’s not a prayer of effort or intensity… it’s not a test of the soul but rather an encouragement. It’s neither breath or non breath. It’s neither in or out of time. It just is.

And sometimes in this silence, especially when I am not especially aware of my connection to my soul, it can feel lonely. Like the past few weeks.

AND SO I CHANGED THE STORY.

It’s why I missed a couple week of posts, because I hadn’t quite figured it out. And of course the story isn’t actually figured out. or written, but it’s changing.

Cause now I know that when I am in “that space,” I’m not actually lonely, or alone, or isolated. I’m in a prayerful place and I can come to the surface to connect. with a sense of self and community… because I am not fighting for my life.

I am living it.

AMEN.

Fearless Faith...

WELL… sometimes. Like TODAY.

SO this is my obligatory infusion photo (to myself)… yes… I am deep into the grounds of transformation.

Ever be it still

Ever be it now

Like I’ve seen before…

Couldn’t know it then

As I am

This… ( time ) -

In kindness,

I can see

in TRUTH…

I still exist

a reflection isn’t real

without, the weight of me -

and in this light

His Glory

divine…

never mine and never more

Fearless Faith

Today was supposed to be infusion number six.

True to form - that is, the way the Holy Spirit and I roll -

PLANS CHANGED.

My counts are dangerously low for chemo and I am receiving a blood transfusion instead.

…And sometimes

I may feel defeated, annoyed, or even self doubting by such an obstacle.

but I have to say that RIGHT NOW… I AM FEARLESS.

Maybe it’s because my two babies in heaven keep giving my signs… maybe it’s because I have so many amazing prayer warriors… maybe it’s because I am trusting the Holy Spirit’s language… maybe its being in complete surrender and falling even deeper…

and maybe, just maybe it’s REMEMBERING THAT -

I BELIEVE IN MIRACLES.

And… of course, that is why all the above is coming through AND…

I’m feeling transformed… so when I heard the news today….

I didn’t feel a setback… I didn’t feel like my plans were altered… I didn’t even feel upset by low counts…

GOD IS HERE RIGHT NOW …. A PERSONAL VISIT…. A REMINDER OF HIS PRESENCE

Yesssssss…… it’s HIS PLAN.

Because in a way… when things go according to plan… it’s easy to feel alone.

But when God takes His personal time… to remind me that He’s got this…

WELL…. THAT GIVES ME CHILLS.

Of course God shows up for us always….

BUT…. when He goes out of His way to remind me… I feel awesomely blessed.

FEAR is tricky… because the moment we are out of its presence it will attempt to pull us back into its hold.

It offers me a breath, a foundation… hours of worry and heartache.

And sometimes, I choose it.

But NOT TODAY.

AMEN.