Countdown to a New Year

After being in the Mandarin Oriental Hotel during the Boston Marathon bombings, life changed dramatically for me as it did for everyone whose lives were touched by the events of April 15, 2013.

The explosions opened up the portal for me to experience my own trauma history in a new way. I learned what it means to be Boston Strong.

I published a trilogy of poetry books this year inspired by my healing journey:

I bought my first pair of Vibrams



and now run in a minimalist running shoe:

I returned to the roads and to the running community where we celebrate and heal in the aftermath of 4/15/2013 running the Brookline Symphony Orchestra 5K Fun Run & Walk, my first race in 2 years:

and the Feaster Five on Thanksgiving morning:

In 2014, I will publish my memoir, "Coming Home:A Memoir of Healing, Hope and Possibility."

I plan to run the Tufts 2014 10K and build my miles.

I will continue to heal and grow with the help of the wonderful Aquatics Therapy program at Spaulding Rehab where I began to find my strength again in 2013.

I will be putting my fund raising hat back on to support Greg Gordon and Karis Antokal's 2014 Boston Marathon run for Spaulding and plan to volunteer with the Development Office as we countdown the days to the Boston Marathon.

I will continue to share my message of healing, hope and possibility through my blog and in the way I live my life.

I am blessed and grateful for all that 2013 taught me and the place where it brought me as I begin a new decade of my life. I am excited for 2014!

Celebrating 60!

"60 is about feeling excited to be alive at a time when you're free to really live.
60 is about knowing yourself, being yourself - and truly liking who we've become.
60 is about celebrating the beginning of the most beautiful years of your life."
~Hallmark card from my husband, Tom

Seven years ago, after receiving the diagnosis of post polio syndrome, I did not know what kind of shape I would be in for my 60th birthday or if I would have a 60th birthday to celebrate. The future looked grim to say the least.

It's been a phenomenal healing journey and I can say unequivocally that I feel healthier, more vibrant and enjoying life at 60 than I ever imagined would be possible.

Two years ago, I was experiencing another "relapse" of post polio syndrome. I now know that post polio syndrome was a result of the stress and strain of compensatory patterns in my body that were forged and formed from paralytic polio and trauma. As I aged, it became more and more of a challenge for my body to support the old patterns.

For my 60th birthday, I was planning to run 6.0 miles. Somehow we got lost in the calculations of the distance and I actually ran 6.94 miles according to NikePlus. Just like the candles on the cake - one for good luck!

Here are some photos Tom took before the run as I psyched myself up to run in the 19 degree weather:



Celebrating 60! Celebrating being back on the roads having run the longest distance I ran since the Tufts 10K 2010 knowing that the 60's are going to be absolutely sensational!

Learning to Dance from A Celebration of Life available on Amazon

It’s never too late
you’re never too old
to learn to dance
paralyzed from polio
paralyzed with fear
frozen in time

awkward and unsure
shame and confusion
embarrassment
I fell into the trap of ego
my leg snared in the jaws of agony and defeat

saved by grace
my rescuer nursed my wounds
tentative steps
stiff and clumsy
painstaking movement
fueled by thoughts of days gone by
the match is lit
no match for darkness
the music of my heart’s desire
moved me to try once again
step by step
the dance of my life
the way I was always meant to dance

yes wrinkles mark the passage of time
yet
I burn brightly

until my dance is done.

Pivoting - Like a Boss!

During last evening's class with Karis Antokal (who by the way is running Boston 2014 for Spaulding Rehab) she up leveled the exercises for Tom and me. Rather than simple side stepping, she wanted us to move quickly as though we were pivoting in a basketball game.

As a survivor of paralytic polio, I never could play basketball. The polio virus had damaged my spinal cord; neuromuscular development to allow for learning contralateral movements was affected. After coming out of a leg brace three years after I contracted polio, I experienced 9 years of unrelenting trauma taking a further toll on my body and neuromuscular system. Seven years ago, my body virtually shut down in the guise of post polio syndrome.

It's been an incredible healing odyssey and this past year, I have experienced profound healing of mind, body and Spirit. You'll be able to read about it in my soon to be released memoir, "Coming Home:A Memoir of Healing, Hope and Possibility."

Last night, in the warm, healing waters of Spaulding Rehab's pool, and with the coaching, coaxing and cajoling of Karis and Abbey Turner (who is the pool coordinator), I closed my eyes and went within channeling my inner Larry Bird. I could feel the awkwardness of my movements but it didn't matter. I was creating and nourishing new neural pathways. Tom Myers, in his article on Kinesthetic Dystonia speaks to how important it is to create new neural pathways through movement especially after an injury or disease that affects neuromuscular coordination. We also did a circuit with jumping jacks, squats, twists and high knees.

For the past 54 years I had been searching for ways to come out of being trapped in a form forged by paralytic polio and trauma. Since regular bodywork sessions and now the blessing of the Aquatics Therapy program at Spaulding, I am discovering the joy of movement in my body. I am aware of the blessing of grace in this second chance and being able to get out there and twist and pivot - like a boss!

Next week I turn 60 years old on Christmas Day. My birthday Christmas wish is that you donate to Karis' Boston Marathon Run on Crowdrise. Bless you!

The Shell from A Celebration of Life now available on Amazon

The shell of a person
a shadow of the me I was meant to be
broken heart
broken hearted
encased
entombed
or so I thought…

a protective shell
as a cast protects a broken bone
a chrysalis
fragile inside and out
tender protection
facing death
transformation
beyond what eye can behold

free now

to fly!

Eight Months Later - Celebrations of Life - "From hate to love"

When I woke up yesterday morning making the preparations for my birthday brunch with our dear friend Greg Gordon and his beautiful family, I realized it was the eight month anniversary of the Boston Marathon Bombings. My 60th birthday is on Christmas Day. It's a year long celebration as Disney would say and I'm having special times with special friends to celebrate since on Christmas Day everyone has their own family obligations. Greg and his family, Tom and I were together when the bombs went off waiting for members of the Spaulding Rehab Race for Rehab team to cross the finish line and celebrate at the Mandarin Oriental Hotel. Greg and I were members of the 2009 Race for Rehab team and have been friends ever since.


Not even winter storm Electra or an NStar "power outage" could dampen our spirits of the day as seen in these photos:




And then it was off to Brookline Symphony Orchestra's A Winter Celebration concert. As Leonard Bernstein said,



Musical director Adam Boyles brought his A game once again to the podium as he delighted the audience with his enthusiasm and musical prowess conducting the Orchestra and the PALS Childrens Chorus in a selection of "non traditional" holiday music yet music that captured the joy and celebration of the season.



This morning on Facebook I happened to see this story in my news feed - Boston Marathon Bombing Survivor proposes to girlfriend:

WHDH-TV 7News Boston

As the Channel 7 newscaster so eloquently said, "from hate to love."


Beneath the Surface from A Celebration of Life now available on Amazon.

A landscape of scars
the map not the territory
of where a body has been
the well worn path of a weary traveler
seated on a rock
by water’s edge
contemplating Truth
and beauty

what do my eyes behold

the gnarly knots on the tree trunk
or the majesty of the mighty oak
roots deeply descending
branches outstretched to the heavens
giving me shade and pause
to remember to remember

the body is my casing
the real trophy’s deep inside
no surgeon’s scalpel
no hands raised to harm
can touch my magnificence
drinking in this majestic view

gentle breeze inviting me
no invoking me to cast off my anchor

no longer assailed
Spirit sails
soars
celebrating the joy of being.

"You're wicked strong...keep it up."

The temperatures plummeted here in New England. My husband Tom said, "I think it's time we go back to the BU Track to train." He was referring to when we were training for the 2009 Boston Marathon and we did "105 Times Around the Track" to get in our miles during the grueling winter of 2009.



I'm not training for any particular event. My next race is not until April 6, Run For The Troops 5K. But I love running. I love the discipline and I love being able to do cardio workouts. I love challenging myself and I love seeing what my body can now do.

I am not the only one noticing my newfound strength. As we were running around the track, there was a young personal trainer leading a small group of BU women through their paces. About 3.5 miles in, she spontaneously said to Tom and me, "You're wicked strong...keep it up!"

When they were finished with their workout, we cheered for them as we passed them winding down our 35 times around the BU track.

If you would have told me at the beginning of this year that I would be running 5 miles, I would have told you that you were out of your mind! With the way I felt, I thought that there was no way I was going to ever be able to return to running. But somewhere inside of me, I held onto hope, healing and possibility.

And when once I worked to "find my strength", I must agree with that personal trainer at BU yesterday, "I am wicked strong -- keep it up."

Moving Forward - from A Celebration of Life now available on Amazon

Tethered and tied up to what once was
decades ago
staples, sutures
scar tissue
gingerly
tenderly released
my form reappears

now training for a 5K
training mind
moving mindfully
retraining body

a surprising bounce in my step
a lightness in my heart
awesome creation
transformation
how is this possible?

A beacon of light for others
of what IS possible
once defeated
now defying the odds

trusting in this miracle
moving forward.

Boston 2014 Runner Spotlight: Karis Antokal

"The answer to the big questions in running is the same as the answer to the big questions in life: do the best with what you've got."
-Unknown


"I'm not a runner -- well not yet anyway," Karis said to me during yesterday's Aquatics Therapy Class at Spaulding Rehab.

"Oh yes you are," I said somewhat out of breath as Karis put us through our paces with Michael Jackson's tunes keeping us pumped up during the Find Your Aquatics Strength workout.

I reminded Karis of this quote:



Karis applied to the 2014 Spaulding Rehab Race for Rehab Team inspired by the strength and courage of the survivors of the Boston Marathon bombings who received their care at Spaulding. Karis is a massage therapist at Spaulding.

Here is a photo of her from the Patriot Ledger which captures her compassionate care with a teen who was paralyzed and vowed to walk again:



She tells me all the time what an inspiration I am to her. Well she inspires me every week, twice a week to challenge myself and find my strength in new ways. In yesterday evening's class she had us "play hop scotch" in the pool and pivot doing squats. She coaxes us along as our heart rates rise and we are moving in every direction to nourish our neuromuscular and myofascial systems. She is tender and compassionate while also pushing everyone to their edge. She watches everyone in the pool to ensure that we are safe in the way we are doing the exercises. She knows my neurological challenges yet works with me to go beyond the challenges.

And she is challenging herself in new ways....

Karis had never run before. She started with a couch to 5K program and will work with the Race for Rehab team to train to go the distance on April 21, 2014. I know it won't be easy especially as she trains through the grueling New England winter. But I also know that with Karis' fiery Spirit, her background in dance and her joy of movement; her dedication to her patients at Spaulding along with her sense of humor (a must for every runner), she will go the distance.

And she is going to need your help in going the distance with fund raising. She started her fund raising page today and let's inspire her to log those miles as we donate those dollars... Here is the link to her fund raising page on Crowd Rise.

A week from Wednesday, I turn 60 years old. Spaulding is where I took the first steps on my healing journey seven years ago this month. Spaulding is where I am building strength and creating change moving beyond paralytic polio and trauma. The best gift you can give to me is to donate to Karis' fund raising page so that Spaulding can continue to do the phenomenal work they do in helping all who come through their doors to find their strength.

As I left class to go home, I stopped by the office to thank Karis for another great class. I smiled and said, repeat after me, "I am a runner." She smiled that beautiful smile of hers and said, "I am a runner."

Courage - January 5, 2009 from A Celebration of Life now available on Amazon
The fear of ice and snow and slush embedded in my soul
a training run in winter - the path to Being whole.
A winter scene - Jamaica Pond - a feast for eyes' delight
to witness nature's splendor and behold this glorious sight.
A leaf - a tiny dancer - skating free without a sound
God's breath directs her movements, as She guides her twirling 'round.
Families of ducks decide to walk or take a dip
a comedy of errors into icy water slip.
The branches now bejeweled with ice bend with loving Grace
sparkling diamonds' anchor water's surface hold in place.
God's hand a glove of glistening snow hugs rocks along the wall
their heads peek out reminding me I'm answering God's call.
A scene I'd never witness if I let my fear take hold
courage triumphed, steppin' out with footsteps sure and bold.
Knowing that the pain subsides and Spirit can prevail
the Marathon is beckoning - through those miles I shall sail.

Like a Boss!

My friend Melissa Gleaton posted this on Facebook yesterday. We met during Feaster Five training when Tom and I went up to Andover to run the course hosted by Merrimack Valley Striders members. Melissa also blogs about her journey at Learning to Walk Again. Talk about living life like a boss!



I am not training for any endurance event but I do feel the need to build my miles again. As a brief recap:
In December 2006, I was diagnosed with post polio syndrome, a progressive neuromuscular disease. My future looked grim but to quote Rhett Lewis of 7 News, I was not going to take post polio syndrome sitting down.

I ran the 2009 Boston Marathon as a mobility impaired runner:



I went back into outpatient therapy and wasn't sure I would ever be able to run again given the toll the Marathon took on my body. I returned to the roads but in September of 2011, ran what I thought was going to be my last run ever.

In September of this year, I returned to the roads and ran the Brookline Symphony Orchestra 5K Fun Run which you can read about in my post, A New Beginning.

I've been feeling this need to build miles again. I plan to run the 2014 Tufts 10K for Women but that's not until next October. There is something amazing that happens to me when I get out there and go literally for miles. And it's winter which used to take an incredible toll on me mind, body and Spirit.

My husband does his long runs at his pace on Saturday and then goes with me on Sunday for whatever distance I am up for. We also do a 5K during the week along with two aquatics classes at Spaulding Rehab.

He asked me what I felt like running for today's run. I told him I wanted to do the portion of the Boston Marathon route from a little farther out from Marathon Sports Brookline to Kenmore Square and back. Here is the link to the result from my Nike+ run.

I did 5.41 miles in 1:17:05 - a 14'14"/mile pace!

It was cold (30 degrees). It was hard with the rolling hills up and down Beacon Street.

But I felt amazing out there - and I did the longest and fastest run I had done since my return to the roads-like a boss!

Beneath the Surface from A Celebration of Life now available on Amazon

A landscape of scars
the map not the territory
of where a body has been
the well worn path of a weary traveler
seated on a rock
by water’s edge
contemplating Truth
and beauty

what do my eyes behold

the gnarly knots on the tree trunk
or the majesty of the mighty oak
roots deeply descending
branches outstretched to the heavens
giving me shade and pause
to remember to remember

the body is my casing
the real trophy’s deep inside
no surgeon’s scalpel
no hands raised to harm
can touch my magnificence
drinking in this majestic view

gentle breeze inviting me
no invoking me to cast off my anchor

no longer assailed
Spirit sails
soars
celebrating the joy of being.

Oh There's No Place Like Home for the Holidays!

It's a wonderful time of year to welcome family and friends into our homes to celebrate the season of love, light and joy. This holiday season is incredibly special for me. Our daughter returns home after completing her bachelor's degree in Tennessee. My husband begins a wonderful new job that is going to allow him to continue attending Spaulding Aquatics Therapy classes with me. It is going to help us spend quality time together in our beautiful home and life that we have built for the past 35 years.

I turn 60 on December 25th.

I have finally come home to my body and to my life.

Here is an excerpt from my memoir, "Coming Home: A Memoir of Healing, Hope and Possibility" that I am feverishly editing to get ready for you:

Introduction

I left home at the age of 5 – my earthly home that is. I contracted childhood paralytic polio. Polio was the AIDS of its day. If you contracted polio, you were shunned. There was a fear of contagion. Fear breeds ignorance that is far more devastating that any disease. Three years later my father fell into alcoholism and I was raped and beaten, threatened with death and tortured by my father for 9 years until he ended his life. My maternal grandmother physically, sexually and emotionally abused me with cruel rituals that tortured my body and my mind. My mother was addicted to prescription pain medication. My older brother was numb and trying to survive the chaotic household as best he could. He chose to align himself with the aggressors. I learned early on how to dissociate and to harness the power of my intellect to survive but I paid a steep price for leaving home and disowning my body. I bided my time until it was time to heal.

The changes were subtle beginning in 1996. I tired easily. I couldn’t walk as far or as well as I once had. During my annual physical I would mention these vague complaints and every year all of my lab tests and EKG were normal. My primary care provider suggested that I needed to do more exercise. In the summer of 2004, the symptoms had gone from subtle to screaming at me to pay attention to my long neglected body. During the Democratic National Convention at the TD Bank Garden, a few blocks from the VA Causeway Street Clinic where I worked, we were temporarily relocated to the Jamaica Plain Campus of the Boston VA Healthcare System for security reasons. Because many of my patients cancelled their appointments rather than making the trip out to the Jamaica Plain Campus, I had more time on my hands than usual during the day. I realized what was happening in my body.

I was having difficulty swallowing and breathing. It was a struggle for me to get out of bed each morning but I knew I needed to soldier on for the sake of my patients, for my sake and the sake of our family or so I thought at the time. I experienced numbness and tingling on my face and down my right arm. My body ached and my muscles burned. I felt a constant lump in my throat. I felt a sense of impending doom but then I would go on to see my next patient. It was as though I was leading a double life harboring and hiding these symptoms while trying to maintain my functioning as a social worker, mother and wife. I was an expert at leading a double life since I was 8 years old. I decided it was time to let my doctor know what was happening to me.

Seven years ago - it seems like a lifetime since I sat in the outpatient clinic at Spaulding Rehab's International Center for Polio and Post Polio Syndrome and in many ways it was...

And this holiday season I am so blessed and grateful that I have found my way home.

Learning to Dance from A Celebration of Life now available on Amazon

It’s never too late
you’re never too old
to learn to dance
paralyzed from polio
paralyzed with fear
frozen in time

awkward and unsure
shame and confusion
embarrassment
I fell into the trap of ego
my leg snared in the jaws of agony and defeat

saved by grace
my rescuer nursed my wounds
tentative steps
stiff and clumsy
painstaking movement
fueled by thoughts of days gone by
the match is lit
no match for darkness
the music of my heart’s desire
moved me to try once again
step by step
the dance of my life
the way I was always meant to dance

yes wrinkles mark the passage of time
yet
I burn brightly

until my dance is done.

A "Thriller" of An Aquatics Class

As everyone made their way into the pool for Wednesday's Find Your Aquatic Strength class at Spaulding Rehab, the music of Michael Jackson filled the air.

When the song Beat It came on



I realized that seven years ago I did not set out to "beat" post polio syndrome. I set out to heal my life. I knew the story of Evy McDonald from Bernie Siegel's Love, Medicine and Miracles book that he wrote in the late 70's. She was given 6 months to live after being diagnosed with ALS. Today she is thriving and is a minister in upstate New York. She is also a survivor of polio. She decided that she did not want to die hating her body. She sat in front of a mirror naked in her wheelchair feeling like her body was a "bowl of jello" and found a way to love herself. Love does indeed heal. Perhaps more than any of the therapies that I experienced when I was first diagnosed with post polio syndrome was the love and compassion I received from the therapists. It was the first time that anyone "bore witness" to my experience of paralytic polio. I was no longer an outcast and a leper. I learned how to love myself unconditionally. I took the first steps on my long journey home.

In Wednesday's class as Karis led us through our paces, one of the women with whom I have become friends and I couldn't help but sing to The Man In The Mirror



Karis said that she was totally on board with karaoke aquatics!

As we returned to the shallow end to work upper body strength, I needed the wall to support me for the first set of biceps curls but the music got me really pumped and by the second circuit, I was able to harness my core strength and work those bicep curls without support.


In Wednesday's class, I allowed my body to luxuriate in the sensations of the warm water that swirled around me as I made waves with my movements. I thought about the contrast between the warmth and softness of the water that embraced me with the woolen blankets that were once used during the painful physical therapy sessions to help me recover from paralytic polio.

As we cooled down and stretched to the sounds of You Are Not Alone



we realized that Karis, our wonderful therapist, who had been a dancer, choreographed a playlist to accompany our workout as we found our aquatic strength. I loved watching her dance moves and the freedom with which she moves in her body. She inspires me to continue to find strength and freedom in my body.

Karis is going to run the 2014 Boston Marathon for Spaulding Rehab. She has never run before. She ran her first 5K this week and stretched with us. She told me that I inspire her on her road to the Boston Marathon.

I find this entire journey absolutely thrilling!

Coming Home from A Celebration of Life available on Amazon

A stranger to myself
hollowed heart
broken and defeated
cement thick walls
no way out
no way in
my light flickered and dimmed
never went out
as he breathed me
he fanned flames of hope
I’d stumble and fall
he held out a hand to me
knowing that love lights the way
I’m coming home.

Another Step Forward - With One Pound Weights - Actually Make That Two Pounds

"The best we can hope for is to stabilize the deterioration where it is now but it's important that you be prepared for the likelihood that you will be in a wheelchair at some point in the future." That's what I was told seven years ago. Dr. Rosenberg meant well - he really did - based on medicine's understanding of the sequellae from paralytic polio, post polio syndrome is deemed a progressive neuromuscular disorder.

It's been quite the roller coaster ride of a healing odyssey these past 7 years, and today marks a milestone for me. After a few months working in twice/week Aquatics Therapy classes at Spaulding Rehab, I knew the time was right for me to challenge myself.

I told our therapist, Karis, that I wanted ankle weights.



She brought over the 1 pound weights and checked in with me throughout class asking me how I was doing.

I felt challenged and I felt my body working in new ways. While doing squats, I could feel the energy and strength flow from my feet to the crown of my head. I could "feel the burn" in new ways during all of the exercises.

Tonight I am sore and incredibly delighted that I have taken another step forward on my healing journey - this time with one pound ankle weights on.

Moving Forward from A Celebration of Life now available on Amazon

Tethered and tied up to what once was
decades ago
staples, sutures
scar tissue
gingerly
tenderly released
my form reappears

now training for a 5K
training mind
moving mindfully
retraining body

a surprising bounce in my step
a lightness in my heart
awesome creation
transformation
how is this possible?

A beacon of light for others
of what IS possible
once defeated
now defying the odds

trusting in this miracle
moving forward.



p.s. The other day in Aquatics Class as I got my weights, I happened to glance at the color coded chart for the ankle weights. I am actually using two pound ankle weights!