Category Archives: multiple sclerosis

Remembering Susi Roos

In 1993 Susi was recommended to me as a massage therapist to help me cope with multiple sclerosis. She incorporated energy balancing with our sessions, which was new to me. With her help, and other healing professionals. I healed from MS in 1995. As a result, I had a creative re- awakening and began a poetic journal to sing from the Heart. Susi and I continued working on healing through diagnosis, treatment, and recovery from breast cancer. She was a mentor, a partner in healing, a teacher, a student, an inspiration, a supportive friend, a fellow writer, and a colleague.

Snippets that came to mind after her passing (June 26, 2023):

–Susi introduced me to the concept of inner listening (re-connecting with Spirit), even giving me “homework” from our healing sessions to do a quiet time every day to allow listening.

–She introduced me to Rev. Ron Roth and drove us down to Starved Rock for more than one Healing Service.

–She heard about Reiki classes with Bill Farber and arranged for us to go.

–She slowly added energy balancing to our early massage sessions, leading me to Energetic Life Balancing and workshops with Robert Walden? and his wife, Betty Lou Lieber? (I still do some of the daily ELB sheet, every day).

–She had a Spirit Circle gathering once a month and I met Geary Davis there. One time, when Susi was away, we conducted the Spirit Circle. Geary became a dear friend and my acupuncturist.

–Susi had the idea of writing the second set of verses of my song, “Prayer of Lovingkindness,” in present tense, which I sang at the opening or anniversary celebration of Infinity Foundation, and many other places. It is on my CD, Full Blooming.

–Susi was the reason I went to the Cancer Treatment Center after my second round of breast cancer, 11 years after the first, (I did not end up staying there) where I met Katherine Puckett, who I now know through folk music and Facebook, a small world.

–Susi was a great supporter of my writing. Sometimes I would read new poems to her as part of our sessions. When she was at the Healing Center in Glenview? she sold my cards and books at the store there.

******

From my first book, As Easy as Breathing: Reclaiming Power for Healing and Transformation, Poems, Letters, and Inner Listening:

In Gratitude

Many people answered my call for help, some whose names I never knew. Although I cannot thank each of them individually, I am most grateful for their timely presence in my life. Special thanks to my medical team, particularly Noreen Kelly, Cathy Lanigan, Steven Bines, Janet Wolter and Michelle Goodman. Your warm support, kindness, and listening made all the difference. I would also like to acknowledge the following people. Warm hugs of gratitude to Susi Roos, who was my partner in the healing dance and who guided me toward inner listening, and to Barbara Racioppo, who made a safe and loving space for me to consider and risk healing. I am grateful to Ron Roth for being his loving, healing self and for laying out the choice: whether “to become bitter or better.” His support meant a great deal to me. Following treatment, Fran Rubens helped me to revive and restore, stimulating me to grow on all levels. Thank you. Thanks to Tricia Higgins for her gift of sight, great hands, open heart and willingness to read my early manuscript.

Kip Snyder helped me recover and trust in my true voice. Without his unconditional support I would not have risked sending such personal work out into the world. He also gave me the idea for “Bird Poop.” Thank you so much. I am most grateful for the detailed comments and encouragement of Chris Belz. His words buoyed me up in difficult times. Thanks to Jean McGrew whose healing journey, friendship, and beautiful poems warmed and inspired me. The writing of Mary Oliver, Lisel Mueller, Jane Kenyon, and Natalie Goldberg opened the door for me, making it seem possible for me to write. I am deeply grateful to Cynthia Zeki Riley for her generous support and comments on the final manuscript of this book. Thank you all for doing what you do and being who you are and sharing it with me.

My deepest love and heartfelt thanks to my generous husband, Stephen, who was willing to walk with me on this winding, sometimes dark, sometimes luminous road, and to Blake and Alex, whose love and hugs kept me connected to the earth.

 

Prayer of Lovingkindness

May I be at peace.
May my heart remain open.
May I awaken to the light of my own true nature.
May I be healed.
May I be a source of healing for all beings.

May you be at peace
May your heart remain open.
May you awaken to the light of your own true nature.
May you be healed.
May you be a source of healing for all beings.*

May we be at peace.
May our hearts remain open.
May we awaken to the light of our own true nature.
May we be healed.
May we be a source of healing for all beings.

******

I am at peace.
My heart remains open.
I awaken to the light of my own true nature.
I am healed.
I am a source of healing for all beings.

You are at peace
Your heart remains open.
You awaken to the light of your own true nature.
You are healed.
You are a source of healing for all beings.*

We are at peace.
Our hearts remain open.
We awaken to the light of our own true nature.
We are healed.
We are a source of healing for all beings.

*The second and fifth verses may
be repeated three times:
–first time: envision a loved one
–second time: envision someone you are at odds with
–third time: focus on a particular troubled spot of the earth.

Thus, the prayer starts with you and ripples outward like a stone dropped on a clear pond.

Susi Roos had the idea to write the second set of verses in present tense, a powerful expression of healing.

Words to the Buddhist metta ( lovingkindness) meditation adapted
from Pocketful of Miracles by Joan Borysenko, Ph.D.

Sung on my CD, Full Blooming: Selections from a Poetic Journal
Vocals and music by Margaret Dubay Mikus

 

11/3/95

To S.R.: Thank You

Thank you for the songs
at just this perfect time,
songs that nurture and support
those newly healed places,
songs of true inner knowing
and connection.

These are songs that
make me tingle and cry
with their truth
and love and joy.
These are songs that have
the power to uplift and enfold.

Thank you.

Margaret Dubay Mikus
© 1995

From my poetic journal

 

11/20/95

Anger

I need to release some old baggage
to do what I set out to do.
A chunk of this turns out to be deep anger
directed at my long ago self,
having grown and mushroomed in the meantime.
When I think of letting it out,
it seems to me to be a white hot flame
that will melt everything in its path.
It feels quite dangerous to send anger out
to wreak such destruction.
But there is also a voice in my head
from someone I heard recently:
“Believe that you are harmless,”
meaning it is safe to let the anger go
no matter how it seems to feel;
the result will be fine, no harm done.

Margaret Dubay Mikus
© 1995

From my poetic journal

 

11/28/95

To S.R., My Dancing Partner

It incredible to me
that we ended up partners
in this bi-weekly parallel dance.
First one leads, then the other
in perfect rhythm and harmony.

It is no coincidence that our lives
cross in so many different ways,
spiritual explorer, writer, healer,
teacher, seeker of truth,
mother, daughter, and wife.

To mix in another metaphor;
it seems to me that we are
two perfect blooming roses,
one, an early spring blossom,
the other, a later blooming variety.
Both exactly right and magnificent,
just what the garden needs.

These past years we have both grown
and changed and bloomed the more fully
side by side.
All at the perfect time;
changing with the seasons.

Speaking for myself,
this healing dance that we do
has been nourishing and nurturing.
Your intuition and Connection
continue to amaze and delight.

What an awesome, incredible woman you are
with all these pieces aligned!
The perfect mirror for me to see
reflections of my true self.
It has been a joy to watch our petals unfold.

Margaret Dubay Mikus
© 1995

From my poetic journal

 

1/14/96

To All My Greek Columns

I have been drawn to you
and drawn you all to me,
for the purpose of building
a new temple that is luminous
from the light within.

This temple shimmers
with a glow so intense it radiates
out to all who pass by.
This is a place where people can come
to see and be seen, to heal and be healed.

You all have been the columns
that supported this growing structure,
Greek columns, each beautiful and unique,
each providing your own kind of support.

Initially the temple in my vision
was just a glowing mist in my head,
with the Greek columns at the base.
It has now become a firm structure
with your support incorporated.

Thank you.

Margaret Dubay Mikus
© 1996

From my poetic journal

 

7/13/96

To S.R.

When the haze
lifts,
am I frightened
by the light?

When mist
dissipates,
is the world
all the more clearly fear?

When fog,
so dense I can taste,
no longer safely
encloses,
then…then
do I welcome back
clarity and color,
fullness of living and loving?

Or do I retreat,
shivering in fear
under dark covers?

Fear comes in many guises.
It doesn’t have to be
heart-pounding and
brain-numbing;
it could be a tiny voice
that says “It isn’t safe”
and is believed.

Margaret Dubay Mikus
© 1996

From my poetic journal

 

11/26/96

Thank You to All

Never was it more true
we do not heal alone.
When did this part
of the journey begin?
Possibly with Carol
and Judy who sent me.

And another Judy who sent me
to Barbara who sent me to Susi.
Thank you to all.

Then there was Bruce and Pam
and Noreen who watched over
and Cathy and Art, who played
his part. And all whose
names I only briefly knew.
Thank you to all.

To Steve and Janet and Shalina,
two medical students, Mike and Bill,
two nurses, Dorothy Ann and Heather,
whose minds were willing and hearts were open.
To Walter who did “anesthesia by distraction,”
and to Michelle and Madeline, Sheila, and Sally.

To Bill and Bill and David and Betty,
Tom and Lynn, Eleanor and Gabrielle,
Depak and Louise, Joan and Bernie,
Mary Ann, Susan, Peter and Thomas.
To Caroline, Sam, and Cecilia;
Peggy and Pam, Etta and Mary Ann,
Toni, Merle, Joe and Dora,
Jane and Jan, Mary and Sarah.
To Nancy and Lisa, Cathie and Lou.
Thank you to all.

To Stephen and Blake and Alexandra,
there from beginning to never-ending.
Thank you, my sweets, thank you.

To Dorothy who came when I called
and stayed connected throughout.
To Virginia and Marie,
Barbara and Rae,

Chris, Emily and Raechel.

To Elaine and Jo Lynn.
To Francis and Karen and Ken.
Thank you to all.

To Margaret and Elizabeth,
Joanne and Cheryl, Ron and Paul.
To Anita, Ann and Anne,
Julie, Ginny, Kip, and Don,
Ruth and Evelyn, Beth and Sue.
To Ana and Marie, John and Mary Anne,
Barbara, Johnny, and Aubrey.
To Chuck and Joan, Miriam, Kelsey, and Kelly.
Thank you to all.

To Carol, Heidi, Yvette, and Yvonne,
Annemarie, Meryl, Karen, and Carolyn.
To Yanni, Renee, and the singing Benedictine monks.
To Susannah, Hildegard, Susun, and Neal,
Marianne, Andrew, and Rachel…
Thank you to all.

To all who sent and all who received,
all who asked and all who listened.
Thank you. Thank you. Thank you.

Margaret Dubay Mikus
© 1996

From my book, As Easy as Breathing

 

12/12/96

I Am Not/I Am

I am not a particularly good Susi
or Barbara or Stephen.

I am not a wonderful Alexandra
or Virginia or Dorothy.

I am not a terrific Tom
or Bill or Bob or Lucia.

I am not a marvelous Cheryl
or Lauren or Pamela or Karen.

I am not a superb Theresa
or Hildegard or Mary or Blake or Ron.

I am…truly
a magnificent Me.

Margaret Dubay Mikus
© 1996

From As Easy as Breathing
and one of my Life Support Cards (TM)

 

1/8/97

Easy Flowing

And so our tracks
from parallel, gently…gracefully…
separate, edging further apart,
no longer as from wheels
on a single vehicle.

And so our paths do part,
each enriched by the other’s richness,
as tributaries from a great river
that come together for a time
and then split off, flow enhanced,
to each deposit fertile soil
on new and different territory.

How easy can be
this flowing together
and flowing apart.

Margaret Dubay Mikus
© 1997

From my book, As Easy as Breathing

 

1/8/97

Where Can a Teacher Go to Learn

I am no longer a beginner,
except as each day
is a new beginning.

I have done and felt and healed
and explored and learned
for long and continuing.

I am ready, willing and
more than able to teach
and to continue learning.

I have found what is time perfect,
a puzzle where all the pieces fit,
and now I need gentle direction

and guidance. “Just listen,”
I hear and know that is right;
it is not outside, but within.

Where can a teacher go to learn?
Anywhere that resonates.
Anywhere she chooses.

Margaret Dubay Mikus
© 1997

From my poetic journal

 

6/22/97

The Glitter-Laden Bockwinkels
(at Starved Rock)

The glitter-laden Bockwinkels,
smiles upon their faces,
skin sticky from
hiking in the forest,

came to a party
dressed as themselves.
Yuri ate cake on a stick.
Frosting found Kira’s

nose and cheeks and chin.
Chani displayed her easy
prowess at being a dancing
girlish pretzel.

The Bockwinkels range
from small to taller,
each one quite unique.
With gentle hearts and beaming eyes

they clutched their party balloons.
From Kira’s small hand
and teasing, testing eye,
one big sphere slipped out

and floated up higher than
any hand could catch.
Mom Bock tried her best,
even balancing on a chair,

but the illusive ribbon
remained just out of reach.
Still she tried once more,
with support and Kira

on her shoulders, standing
again on aforesaid chair.
The slender brown arm
reached and stretched

and stretched yet further still…
until… the treasure was
happily restored. With secure
loops around small wrists,

the B’s did leave the party,
for quick pics with a wooden Indian,
with smiles and silly faces,
glitter star on lip and forehead,

shiny specks in hair and ears,
balloons swelling under one shirt.
Then off they went,
giggles and energy spent,

packed in the car,
sweaty thighs sticking on seats,
to meet with Dad B and sleep
in the deep with a peaceful heart.

Margaret Dubay Mikus
© 1997

From my poetic journal

 

5/20/05

Invite Fear to Tea

What would it look like, feel like,
to invite fear to tea,
warily circle, then sit, sipping?
No judgment, no struggle,

only acknowledgment and being with,
not to understand or accommodate
or even talk with,
not to lessen or wrestle with.

Just to sit, sipping tea,
graciously, neutrally,
looking eye into eye,
quite normally.

Invite fear to tea,
sit down naturally,
calmly, not as with an enemy,
engage in social niceties:

Sugar? One lump or two? Milk or lemon?
Glance away thoughtful,
not stare or press for conversation,
not in curiosity, not in capitulation.

If ever I could…

Margaret Dubay Mikus
© 2005

From my CD, Full Blooming: Selections from a Poetic Journal

For Krista–In the guise of advice on gardening

Fall Datura, M D Mikus Copyright 2013

4/14/16

For Krista

In the guise of advice on gardening

Something hidden is percolating
bubbling away, fermenting, brewing.
Something is cocooning, gestating
shaping a future shoot to break through.

Right now it looks like nothing.
From the outside the process seems blank
the absence of anything.
But no, believe me I have seen

I have been in and come out of.
You are healing, releasing, absorbing
as the shift happens from then to now
to what is coming.

If you forgot to trust
remember now…to rest
in the arms of. To not fret
(what is the point…

as energy leaks out your feet).
Trust your patience will bear fruit.
It always has…and will now.
Actively wait for it…as you plant

what you want…and no more.
We trust you
to do what you need to.

Margaret Dubay Mikus
© 2016

I have been writing a poetic journal for 25 years, following healing from multiple sclerosis. This poem (from April, 2016) feels right for today. And still good advice. Take good care. <3

 

How Life Changes Sometimes—the surprising backstory for “The Vision: A Fable of Our Times”

Read poem here          Listen to poem-video

In April, 25 years ago, I healed from multiple sclerosis and then left my job teaching in the Biology Department at Lake Forest College. I didn’t know where my life was going from there, but I had a wispy notion that it involved music and healing.

For 8 years I’d been singing alto in the Waukegan Concert Chorus (WCC). Our conductor was going through a rocky period and I wanted to write something to support him. I tried writing a letter, but nothing came together.

That summer, my husband and I were listening to a Chicago classical radio station and heard about a concert that night at Ravinia, a nearby popular outdoor music venue. This concert was Montserrat Caballe, a Spanish operatic soprano we had not heard before. We got two inexpensive seats on the lawn.

As it turned out, the people around us were more interested in talking than in listening to the music. Frustrated, I went and stood behind the pavilion where I could see her performing. She sang Spanish folk opera in a lighter voice and then for an encore, three classic opera arias. The hair stood up on my arms. I could feel the full power and heart connection of her singing. I thought that the healing vibration of the notes would soak into even those who were not paying attention.

At home, as I was doing my nightly stretching, getting ready for bed, words began lining up in my head, “There was a Teddy bear tall and true who sat on a throne…” The words felt very compelling, but it was late. Still, I thought, if I don’t write them down, they’ll vanish. I got up from the floor and began handwriting in a spiral notebook, several pages in all. There were gaps I left blank where I knew something was supposed to go. I worked on the piece for a week. Although I was interested in writing, I had never done anything like this before.

On a sunny Saturday morning I knew the piece—a poem—was done. My heart beating fast, I went outside and asked my husband if he would listen to it. He said poetry was not really his thing, but agreed to listen. I read it to him and later to my voice teacher, Kip Snyder, who was the vocal techniques coach for the WCC. My voice lessons were in the room next door to my conductor’s office. Kip treated my poem as if it was a normal thing that people did. And we talked about how I wanted to present the poem to my conductor.

I wanted him to hear the poem the way I had heard it. I had a boom box with a REC button, so I got a blank cassette and gave it a go. The first time through my reading was too fast, the second time was a more conversational pace, about 5 minutes long.

Since the poem is a fable, it takes place in another world. I wanted to indicate this so I tried printing it on various illustrated papers and played with fonts. I chose one with misty pine trees on the side and a kind of medieval font. I also got a Teddy bear (on sale at Kohl’s) that was very dignified with a plaid bow. And I wrote out the story of how the poem had come to be.

When I gave it all to my choral director—the poem on special paper, the cassette with my reading, the bear, and the handwritten account—I asked him to sit and listen to the recording before reading it.

It was several months before I heard back from him. He burst into my lesson one day (which had never happened before). He was very happy with the poem, etc. I was so surprised I later didn’t remember any details of what he’d said, only the feeling. It was as if a lightening bolt went from his open heart to mine. It was quite astonishing.

As it turned out, he did stay with the chorus for another couple years (including the year I had treatment for breast cancer) and he then left the WCC. Shortly after, I also left.

At the time, I thought that someone might illustrate the poem—like a children’s picture book—and with the recording, it could be sold to support the chorus. Instead, it sat in my computer for all these years. Every so often I would think of doing something with it, but nothing ever happened. Shortly after I wrote “The Vision,” I began a poetic journal, writing poems with a healing intention. With my first cancer diagnosis had come more writing and more healing. And life moved on. I continued writing and the poems became the core of my new life, with greeting cards, books, recording, a workshop series, a website….

Why bring “The Vision” back now in this strange, chaotic time? At first, I wondered if I could even find the poem. I didn’t have the word processing program to read it on my computer any more, but a written copy was in my office files and I retyped it in.

I didn’t know if I would still like it. The writing style is very different from almost all my other work. Twenty-five years of practicing writing craft and living life led me to write in quite a different voice now. But as I read the poem and got to the end, I knew I had to let it go out into this world, at this particular time, to do what healing was possible from the divisiveness and harshness of today. “…Then the world could be changed / based on love and not fear…”

Recently I asked a number of people to read “The Vision” to get their feedback and ideas. Thank you so much to Melissa, Midge, Carol, Mary, Crystal, Marie, and Carol! Your positive comments encouraged me to take the leap and let this poem go. For now, it is a blog post and poem-video. I am working on a chapbook illustrated with my photos.

So…25 years ago, with this first poem, the writing, the recording, the visual, the design of the “whole” was all laid out, as I followed my heart’s longing and healing intention. From not knowing what direction to take, with just a wisp of an idea, my new life began. Weaving these poems used all aspects of me, what I thought, read, felt, experienced, what stories I was told or my own stories, all of my life, no parts left out. And the writing could then go out and help others, my dearest wish. It all began with this one poem and following an inner prompt to write it and let it go.

We can all be of service in various ways, however large or small, during this extraordinary pandemic time. What is your role to play? What has your heart been longing to do? Tell me your story.

Read poem here              Listen to poem-video

39–“How to Not Feel a Failure” from “Frazzle”

On Rt. 60, Heading into the Sunset, by M D Mikus, Copyright 2016

“…How to remember grace and be grateful?
How to be patient and trust…
enough?”

From Poem 39, “How to Not Feel a Failure,” in my book, Thrown Again into the Frazzle Machine: Poems of Grace, Hope, and Healing. Listen to poem here: https://youtu.be/BC2X7WMQmT8

You’ve probably had days (or longer) when you were most aware of not succeeding at what you most desired, had focused all your energy on. For me, on this particular day writing this poem, it was all the healing that had not happened, all the “failures.” I was not thinking about all the problems I no longer had, the MS being gone, cancer not a factor, being able to walk easily…and on and on. All problems that at one time were my primary longing. No, I was most aware of all the healing working its way into my attention, what was yet to resolve. And now, from this vantage point, 7 years later, most big problems of that time are gone. It is good to remember…

For more poem videos from “Frazzle”

THROWN AGAIN into the FRAZZLE MACHINE: Poems of Grace, Hope, and Healing

36–” Perfectly Imperfect” from “Frazzle”

Change Manifest, California Shore by M D Mikus, Copyright 2013

“It is hard to be
out of sync with my body.
The body speaks and
I don’t listen,

I try but
don’t entirely succeed
to remember healing
is a process…”

From poem 36, “Perfectly Imperfect,” in my book, Thrown Again into the Frazzle Machine: Poems of Grace, Hope, and HealingListen here: https://youtu.be/x5pfX7iigzs

Although I am in some ways the same, I am also different now from the woman who wrote these poems 7 years ago, however revealing and personal. I made it through the times described in the book, to the “other side.” The nature of healing and transformation, of course, is that you are changed at the end. When reading these poems for you now, I inhabit them (and her), open my heart, and deliver. With a bit of distance, I perceive things I was not able to see then. But I am aware of the changes, even the way I write has changed.

I began a poetic journal after healing from multiple sclerosis 21 years ago. My creativity was “cracked open.” The poems act as a kind of truer memory, the details and emotions of an event written down at the time are not subject to the fogginess of remembering things only in my head. If you’ve ever compared recollections of growing up with your siblings, you know what I mean.

For more poem videos from “Frazzle”

THROWN AGAIN into the FRAZZLE MACHINE: Poems of Grace, Hope, and Healing