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!