Transforming experiences

CT scan this morning and any prayers and good wishes are welcome!

The waiting room is frequently full and always interesting. Today, I am sitting next to a woman, her daughter, and the daughter’s two-year-old son. He is cute and fairly well behaved for being in such a confined space for hours, but still, he is loud and I like my personal psychic space. I started getting annoyed with his behavior when I remembered an earlier visit to this room.

That time, I was glad to find a seat and wanted to keep to myself, but soon, the woman next to me started singing. Not in a “My Life is Musical” kind of way but more in a “crazy person talking to themselves” kind of way. It was too soft for me to hear the words, but loud enough to be bothersome. I tried to read. I tried to write. I mostly got distracted and annoyed.

After a few minutes, I declared defeat and stopped doing anything. Her voice became clear and smooth and the rhythm was familiar and calming. She was singing prayers in Hebrew, which speak to my heart and have the power to absorb me. How did I not recognize that before?

Out of the corner of my eye, I watched her. She looked to be in her early twenties, with short dark hair, a pleasant face and large build. I imagined that she was a student. As she chanted and sang, her head swayed a little and she had a slight smile. She held a prayer book on her lap and her finger traced the words as she read. I lost myself in her chanting / singing, and before too long, her name was called and she stood for her scan.

“Thank you. That was beautiful.” I told her.

She stopped and looked at me with a smile. “Most people find it annoying, so I try to do it softly.”

“It is beautiful. Good luck with your scan.”

“Yours too.”

And in those few moments, what started as annoying became a beautiful gift.

Unheard music

copyright Brian Andreas, StoryPeople

The words in the picture say:

Don’t you hear it? she asked & I shook my head no & then she started to dance & suddenly there was music everywhere & it went on for a very long time & when I finally found words all I could say was thank you.

For the past few weeks, I have been nursing this cold and been without a voice. I went for nights on end without sleep and my brain was cloudy. Adding chemo to that, twice, weighed me down, and my vibrational energy became heavy and sad. It felt a bit like swimming in mud and I couldn’t seem to get moving in any direction. During the last chemo, I just sat and cried.

For weeks, all I could see and feel was grey and death and sadness, and it kept getting worse. I couldn’t see the light, I couldn’t hear the music, and I couldn’t feel the beauty.

But then, you were there. You sent emails, brief comments, breezy texts and good food. You sent invitations and you even showed up in person. So even if I still was mired in the muck, you provided small glimpses of good vibrations. I couldn’t feel it right away, but you kept at it until I could see the joy and light you bring, and until I could let some of that in. I began to feel your presence as you went about your life, and that helped me to shift in ways that are small but significant.

Thank you for doing your dance and for keeping it going until I could hear the music.

Thank you.

The best laid plans

Chemo tomorrow (Tuesday). I still have a lingering cold so a part of me hopes that they cancel it. Who am I kidding –  most of me hopes that they cancel it. But I do appreciate your prayers and positive thoughts – they carry me through. Thank you!

I’m not sure how to plan for tomorrow, but I hold onto this thought: Some days work out even when they don’t work out according to plan.

The adventure begins when everything goes wrong.
–  from the movie 180 Degrees South

On the Monday before my last chemo treatment, I finished teaching religious education at our church and headed for the door with massive amounts of materials in my arms and my six-year-old son in tow.

A group of folks began setting up for the monthly church dinner, but I had other plans. I promised my older son that I would pick him up from swimming, and I looked forward to an amazing dinner at home. However, as friends filed into the church hall, my younger son lobbied to stay for the pasta and pizza dinner and to play with the other kids.

I, on the other hand, wanted to leave now, pick up my older son with a minimum of futzing, and go straight home. I didn’t want to swing back to get this younger one, no matter how fun it sounded for him.

By now, though, I risked being late for the swimming pick-up. When Deb generously offered to watch him, I rushed out of the church and into my car.

After loading everything into the car, I turned the key. It wouldn’t start. It wouldn’t even try to start.

After a brief moment of “okay, now what?,” I left messages for our sitter and my husband, hoping that one of them could pick up the swimmer and that my husband could come to jump-start the car.

It felt cold and dark both outside and inside the car, but when I lifted my head and looked through the car window, I noticed the warm lights shining through the windows of the church hall. With a surge of gratitude. I returned inside, joining my friends in their conversation and watching the kids run around. While it wasn’t the dinner I had been craving, we were warm and having fun with our friends.

Something spilled on the floor, and John, one of the husbands, took the lead in cleaning it up. I had seen him earlier as well, fixing a lock on a door while waiting to pick up one of his sons. Obviously a guy who can make things right.

“Hey, John, you do everything. Can you jump-start my car?” I was half-joking, but he answered me seriously.

“Sure. I have jumper cables in the car. Just let me know when you are ready.”

His wife looked at me. “You’re serious? Your car won’t start? You seem to be so relaxed about it.”

I don’t typically come across as relaxed so I spent a moment basking in this compliment.

Just then, Tiron called. He was back in cell range, had our swimming son with him and would be right over.

John and Tiron arrived simultaneously at my car and, between them, determined that the car would need to be towed. So, that was settled.

We gathered the boys just as the church dinner wound down, piled into Tiron’s car and headed for home. I felt strangely content.

Yes, we stayed at the church longer than I planned, our family didn’t have the dinner we anticipated and my car broke down….again.

On the flip side, I felt gifted that the car died in front a warm and welcoming place where we could eat a dinner that my kids really enjoyed with friends we don’t often get to see. I felt awe and amazement that someone was ready and willing to help us take care of the kids and someone else was ready and willing to help us with the car. And I felt lucky that I had the energy to flow with it all.

Throughout the evening’s events ran a calm assurance that every problem could be handled. The boys would be taken care of, food would appear, there would be time to visit and time to repair.

In my life, so many situations feel unresolved or outside my control. Having manageable problems and – this was huge – having others also believe these problems could be managed felt like basking in sunlight.

The evening didn’t go as I planned, but we received everything we needed in the exact moments we needed them. It was all perfect. Now I think I need a more reliable car….

I hope that you are finding that you get what you need in the moments you need it. That you are enjoying the longer hours of daylight, the friends who step in at just the right moment, and even a calm knowing that some problems can indeed be solved.

Love,
Marie

Manifesting our visions

Warning: This post is not for the faint of heart or stomach.

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A-man recently asked me, “If emotions can cause your body to make tears, what else can emotions do in your body?”

Good question. In my healing, I spend a lot of time working with the connection between emotions and changes in my body and gained lots of observations. I notice that joy and laughter make my body feel noticeably better and lighter. Stress registers as pain in the tumors before it registers in my psyche, and certain emotional situations cause them to bleed. I’m sure there are more connections to learn.

Leading up to my last chemo session, I had a very emotionally upsetting interaction, lowering my immunity and enabling the start of a cold. Thankful that it wasn’t the flu, I held it at bay for a few days.

Going into chemo with the start of a cold isn’t usually a problem for people (I’m told), but for me, chemo makes my white counts plummet, which means that I can’t fight off anything on my own. I considered skipping this chemo session, but I had already skipped the last one, so we plowed forward, hoping for the best.

The next day, my white cells were gone and the cold took over my body. I was completely congested, lost my voice, and felt like crap.

My first thought was, “This isn’t fair. If I am dealing with chemo, I shouldn’t have to have a cold, too.”

Of course, that isn’t how life works, at least for me. Instead, crap begets more crap, and I can get stuck in that cycle.

I stayed in bed from Tuesday through Sunday while my white cells regenerated. Tiron held down the fort with work, the kids, and keeping me from landing in the ICU.

On Sunday, we had tickets to see Pippin at the ART. The last time I attended a performance there (to see Porgy and Bess), I was so riveted that, even though my colon started growing out of my body, I couldn’t tear myself away. Immediately following that show, I went directly to the MGH Emergency Department and narrowly averted surgery. Fully knowledgeable of the possibility of landing in the ED again, I still didn’t want to miss this show and thankfully, all went well.

On Monday, A-man did his fourth grade poetry reading at his school assembly. This is a rite of passage at his school and my anticipation of this has literally kept me alive for four years. I still had no voice but I wanted him to have someone there who listens to him as only a mother can, and I got to do that. Woo hoo!!!

Later that day, Tiron and I got a bummer phone call. It wasn’t unexpected or health-related and it is ultimately manageable, but still a downer and the timing caused me to reflect on how sometimes, the crap just keeps dropping.

I kept imagining a small creature crawling through the grass. If it crawls through the spot where a dog regularly goes to the bathroom, crap will rain down on it though no fault of its own. If it doesn’t move from that spot, more crap will rain down the next day. And the next.

I had to get out of this cycle.

I firmly believe that we manifest much of what we envision, and made a mental note to envision something new, something big, something on the order of the poetry reading. However, I only made a mental note. I didn’t actually envision anything new.

On Tuesday, while walking somewhere with A-man, a bird pooped on my jacket. After our initial surprised shock, we had a good laugh. It was easy to clean and felt like a clear message that, if I was envisioning myself as that crawling creature getting crapped on then, yes, we manifest what we envision. Definitely needed to envision something new. Still, though, it remained only a mental note.

On Wednesday, I took Julian and his friend, B, sledding. I still had a cold and no voice, but I wanted to get out of the house and spend time with the kids. Sledding is a three-minute drive, both kids are able to carry the sleds and I would just stand and watch. No problem.

Shortly after we arrived, my colostomy bag filled. This was unexpected; it never fills that quickly. Without a convenient bathroom, I mainly hoped that nothing more would pass and things could wait until we got home.

However, time passed, and I got more anxious. B must have sensed this, because she said, ”I’m ready to go.” YES, B!

But J-man wasn’t ready to go. He slid down the hill again and made some snowballs. With no voice, I couldn’t yell after him that it was important to leave now, so I started walking to the car. B walked with me, reminding me gently, “It would be more polite to wait for J-man.” Yes again.

We finally loaded ourselves into the car and were not even out of the parking lot when my colostomy bag blew. It literally blew off my body. I was busy praying that everything would stay contained when J-man said, “Yuck! It smells like Kenobi in here!”

Kenobi is our dog, who I don’t think smells like poop. But I get his point.

“It’s my bag,” I said, focusing on my driving.

“Your bag?” asked B. A perfectly natural question, and J-man covered it.

“My mom poops in a bag.”

I’m SURE that sounded strange. There is no way on earth that would sound normal but I had no extra cycles to normalize it. I willed the cars in front of me to move forward and tried to ignore the definite oozing I felt on my belly, leaving that discussion to the six-year-olds. If there were any more questions, I could cover it later or B’s mom (a doctor) would handle them for her. I didn’t want her to be permanently scarred by this.

Once I got home, the kids played outside and I ran inside screaming in some hoarse, unrecognizable, crazy-woman voice. My clothes were literally covered in shit. I just wanted to get away from it all but of course, I couldn’t. I had to clean it all up.

As I stepped, fully clothed, into the shower, I realized that, while crap might rain down from the sky, the most unpleasant and difficult to deal with is my own. As much as I want to run from it, I am the one responsible for cleaning that up and moving on.

Postscript: A blog differs from a book. As much as we can be absorbed into a book, we ultimately recognize that the characters are not real people. Because of that, you may relate to this absurdity in a different way. While you might feel shock, horror or disgust, it is also okay to laugh. Or maybe I should simply let you know: I find that the best thing I can do is acknowledge the absurdity, laugh, and move on. So please don’t worry about me in that way. And appreciate the wonder of your intact body!

Start by doing what is necessary

Start by doing what is necessary, then do what is possible, and suddenly, you are doing the impossible.

— Saint Francis of Assisi

On Sunday afternoon, our family went to see Pippin performed at the American Reparatory Theater in Cambridge. My kind of diversity filled the lobby: students, seniors, adults and groups of well-educated teens. The assortment of torn jeans, worn shoes, grey hair and no makeup might indicate that this crowd was strapped for cash, but tickets were not inexpensive. This fits me. I admit that money supports the lifestyle I enjoy, while I don’t want to look like I actually spend it.

I imagined a background story for many of the folks – retired professor, artist, group of teenagers without a worry in the world – all characteristics of people I like to be around. I used to feel like I could hold my own with at least some of the intellectuals, but my brain doesn’t work the way it used to. My thinking is not as quick, and I’m not well-versed in current, world or business events. I miss a lot of the subtleties in conversations. Still, I am happy to be in their general company and feel like part of that particular group.

We were soon in our seats, behind a section of hearing-impaired individuals. They animatedly conversed before the show, and once the show began, two interpreters stood in front of them to translate the words from the stage.

The stage was filled with circus acrobatics, more than I could watch at one time. I could take in an overview of the stage, but then would miss particulars. Or I could enjoy the details contributed by some of the performers, like the man walking up the stairs on his hands or the quick flips done in pairs, but then miss other details and definitely miss the big picture. Plus, I kept getting distracted by the interpreters. Not only were they interpreting the show with their hands, they were acting it out in their facial expressions and body language, creating a show unto themselves! When I focused on them, though, I missed the flow of action on the stage.

I wondered about the folks who relied on the interpreters. Could they take in both the interpreters and the stage action at the same time?  Did they miss alot of the stage performance and the nuances there? Did they realize they were missing something?

I myself don’t even realize that I am missing something until someone points it out to me. Even then, I have this moment of doubt, as if it couldn’t have happened if I didn’t actually see it.

I do know this: My assumptions about others are notoriously inaccurate. I can assume that someone had it easy and later learn that they worked hard to achieve what they have. Someone who appears to be without a care in the world actually turns out to be carrying larger burdens than I can imagine. I can neglect to notice the kind heart underneath the brusque facade. So of course, I miss something all the time.

Maybe that is a sign of a rich life with much going on. Maybe it is a sign of a slow thinker. Maybe I make bad assumptions. Or maybe that is just the way it is.

Whether I am looking at the big picture or the details, I’m so glad that you let me hang out with you and to be part of your show! While I promise to do my best to notice the important details in your life, I’m sure, as I did watching Pippin, I will miss something. It isn’t for lack of caring. I sometimes need an interpreter and appreciate it when you point out things that I might miss.

For those who needed the interpreters, for me, and for anyone else feeling like they are paying attention to all that they can, maybe we are doing what is necessary. Maybe we are even what is possible. And when someday we find ourselves doing the impossible, I know we will enjoy the flight!

Guiding lights

Drawn by one of my students

I hope your holidays were wonderful and that you can see beauty in your life as 2013 begins.

I took an extra week off chemo so that I wasn’t doing chemo on New Year’s Day. And yesterday was the feast of the Epiphany (celebration of the visit of the three wise men, who followed the star to find the baby Jesus), which marks the end of the twelve days of Christmas. It makes sense that I return to my normal life this week, though I hope to continue the Christmas magic.

Intertwined with Christmas is the story of the Three Kings. I heard it several times every year in Catholic school, through cartoons, and during Sunday Mass. That would mean I heard that story more than 50 times, making it so familiar that I tend to listen to it on autopilot.

But this past Sunday, when I heard the story again and the homily that followed, a lightbulb finally went off in my head: If it hadn’t been for the darkness, the three wise men could not have seen the star, much less followed it.

Okay, I’m a little slow on the uptake, but that insight clarified an ongoing puzzle for me.

If you have been along on this joyride for awhile, you may recall that, when I am in the depths of despair and my heart is ripped from my chest and life feels like it totally stinks, I become open to all this grace pouring in. I lie there in awe, unable to move and or do anything other than soak it all in. Once I start to feel better, I basically say, “Thanks, I’m good” and go on my merry way.

After awhile, I would fall into the pit again, and again I find it is just me and God, and I reach out for help and promise promise promise that I will never forget this awful feeling or the gratitude that I have for His help if I can just get to someplace bearable. Then His grace shines in my life, in one surprising way or another. Life becomes not just bearable but wonderful and then, despite my frantic and desperate promises, I do forget.

It feels so good to receive all that powerful and loving grace. I truly did want to maintain that connection and that openness to grace without being in a bottomless pit. But I couldn’t see how to do it, leaving me feeling puzzled and a bit guilty.

Lately, I don’t carry that same angst because, for whatever reason, I somehow feel more regularly connected to God and to the myriad of other spirits out there, but I do still wonder how all that works.

And then – epiphany – of course! You can’t see the guiding star without the darkness. And the darker it is, the more stars can shine.

From my friend Abi:

We humans like to quantify and label to live in duality: good bad, happy sad, easy hard, as though one is better than the other, when in fact, the human experience is a tapestry of all the infinite possibilities of feelings…when we embrace the fabric then it all seems to move through and we can have a very full emotional life.

Not that I wish for darkness in my life, but given that it is part of my tapestry at times, I am incredibly grateful to be able to see the light you shine in my life. I’m sure it has always been there, but it has been shining so brightly for me. Thank you for allowing it to shine.

Whether you are a guiding star or one who lights the path so that I can see it in my own good time or one who twinkles merrily and inspires joy or one who enables others to bathe in your light, you create an elegant beauty to the darkness and make it beautiful in its own way.

So…I have chemo tomorrow, and appreciate your good thoughts and prayers and your ever-present light as I do this. And I wish for you that you can see the lights to guide you, no matter where you are.

Love and blessings,

Marie