Thursday, June 27, 2013

What Did You Say?

I lost my hearing around the age of four.  My fifth birthday consisted of a gift of hearing aids:  January 5, 1979, I was fitted with technology that would allow me to hear closer to the level of my peers.  However, with my aids, my left ear was only capable of hearing sounds and not deciphering the words spoken.  My right ear was nearly 70 percent with my aid and my world suddenly became vivid.

I was not born hearing impaired.  My mother always provided me with the same recollection in how I lost my hearing:  I had middle ear infections, not unlike any other child.  I did not respond to the antibiotics and the doctor simply said, “Give the meds time to work.”  My mother was adamant that by the time I was taken to a specialist, it was too late.  I suffered severe nerve damage and the hearing loss was irreversible.

I do not remember much about losing my hearing, aside from being squirted with the cool, slimy, Pepto-Bismal colored pink play-doh like material in my ears.  The pink play-doh would form into my ear and ear canal to ensure a properly fitting ear mold which would attach to my hearing aid.

I do remember my parents being distraught as the specialist informed them both that I would likely never play sports, never play a musical instrument or enjoy music, and never live a fully functional, normal life.

Remember, it was 1978-1979 and times were very different.  My maternal grandmother insisted to my mother than perhaps the right answer was institutionalization.  There are days where I feel the need for a padded room at an institution but it has nothing to do with the amount of hearing that I do, or do not, have.

In recent years, I have determined that my mother’s version of events is not entirely accurate.  Several doctors and specialists have questioned my medical history and my loss of hearing; however, it was not until I went to a new audiologist that she gave me the likely version of what happened to my ears.

It is not typical to suffer nerve damage due to a middle ear infection.  I was floored to this possible un-truth from my mother, but have since realized that my mother had a mental illness that allowed her to create her own set of “truths”.  My audiologist asked me if I ever suffered from high fevers as a young child and the light bulb turned on.  YES!  I had several febrile seizures as a young child, some that sent me to the hospital – so it appears far more likely that is the culprit behind my hearing loss.

Regardless, I focus back on the ignorant doctor(s) that doomed me to a life of no activities because I was now hearing impaired.  These doctors recommended I go to a week-long “camp” with other hearing impaired children to learn to acclimate in my new world.  Little did my parents know, it was a camp for children who were completely deaf and used only sign language to communicate to each other.  I soon found myself in a middle world – I was not entirely of the hearing world, nor was I of the deaf world. 
I circle back repeatedly to the prognosis the doctors gave to me when I was five.  I have come to realize that I do not like being told I cannot do something.  Anything.  By restricting my ability, you give me further ambition and drive to set out and accomplish whatever it is that you think I cannot do.  I have traced this back to my five year old me.

I did play sports; all of them.  I excelled at soccer and then running.  I played the flute from elementary school until sophomore year in high school (when one time, at band camp, it was suddenly deemed uncool).  I absolutely love music across any and all genres and I tend to blast my iPod at an unsafe decibel.  I live a fairly functional and normal life, coupled with a healthy endurance of hearing impaired jokes at my expense (no, Cheryl, the “Wanna buy a duck” joke is still NOT funny).

I do not know sign language; only the swear words and the alphabet (thanks to my friend, Tara).  I do read lips, so when you cover your mouth, intentionally or not (thanks to the Iacaboni boys for torturing me), I may not “hear” you.  I may need you to repeat something for me, as I may not have caught it the first time you said it, due to the amount of background noise.
"What did you say?"

However, please know that if you ever tell me I cannot do something, for whatever reason, you may find yourself sitting back in awe because I will seek to demolish that limitation you have unfairly placed upon me.  Again, I will ask, but with a very different meaning:
"What did you say?"
I have used this perseverant trait to teach my children that they are able to accomplish their goals, as well.  When someone else tries to limit you, you take that boundary line and you surpass it.  You alone can define what is possible for yourself; especially if you want something badly enough.

My oldest has recently used this message and she has used it well.  My strong girl has been confined by others in her most favorite sport for years.  She has been hearing the message that she is good, but not quite good enough, over and over and over again.  We have taught her to use this negative messaging:  keep her head down and to work even harder.  Perseverance is a trait that courses fiercely through our veins. 

My oldest has just received an offer to join a team that participates at a very high regional level and focuses on prepping players for collegiate and professional play.  The opportunity to play at the Elite level is the precise reward for her continued dedication.  My girl has pushed herself to improve year after year, to discredit the naysayers that kept telling her she was not quite good enough or she could not play at a higher level.

“She believed she could, so she did.”  The power in a simple phrase, the ability to believe in yourself so you can accomplish your goals; it is an undeniable empowerment.  Why would we not arm ourselves with a certain confidence and a belief that we can attain what we set out to accomplish?

With that, what will you believe in yourself? 
What will you do to accomplish that goal?

 Anything is possible!

Wednesday, June 19, 2013

Where's Jillian?

When Confessions of a Curvy Girl was born, the main idea behind it was three very different women sharing their thoughts on body image, nutrition, and the endless list of issues that the female gender can go on and on and on and on and on and on and on and on and on and…..oh, you get my drift.

Recently, I was blatantly reminded of the origins of Curvy Girl when I went to try on some shorts.  You know, summer is arriving here in New England (oh gosh, so we hope) and I decided I could use a new pair of shorts or two.

Bad.  Bad.  Bad.  Bad idea.

The first pair of shorts got hung up around my hips.  Yikes.  Okay, so this particular brand runs small.  I quickly discard it to the “no thank you, I will pass” hook in the dressing room.  I try to convince myself I did not really like the color anyway.

Second pair of shorts.  Whoa.  These are the ugliest pair of shorts I have ever seen in my life.  *Toss* on the discard pile.

Third pair of shorts move up my thighs and around my buttocks.  I get excited as I may have found a pair to fit my er, um, eh, curvy figure.  As I move my hands together to hook the waist band of the canvas shorts, I start to break out into a hot sweat.  Did someone turn the thermostat up or do the fluorescent lights just emit a radiant amount of heat after five minutes in the dressing room?  Holy mother…..the waist band closed, however, the ensuing muffin top, okay……..the flabalanche that ensued and came rolling up and over the ridge of sewn fabric was enough to make me shudder with horror.  I rescued myself from the dangers of that natural disaster by removing the Dockers in 2.2 milliseconds.  Survival training at its best.

Shorts 3.  Rebecca 0.

The anxiety started to build.  I checked the labels of all three previously discarded shorts – had I erred and simply picked up the wrong size?  Um, no.  Wow.  How could they NOT fit?

I knew I had gained a little bit of weight this winter.  I had no idea it was flabalanche worthy.  I proceeded to go out and look for the next pair because I just do not give up.  (And NO….the idea of getting the next size up was not even an option….no way, no how, absolutely not going to happen).
In my search for shorts, my husband decides to interject and assist.  No, honey, those are granny shorts.  Let me remind you I am only 39 years of age.  Elastic waistbands, although they may fit, are unacceptable and unallowable in my wardrobe.  Nooooo, honey, those are “juniors” shorts and have a 3”  inseam.  Unless you can stand camel toe and attack of the inner thigh in that adorable pair of hot pink shorts, then please put them back on the rack.  No, honey, I wear athletic shorts a lot… a lot a lot, so please, I would like a “real” pair of shorts.

I almost started to cry. 

What happened to me?  How did I get this way again?  I work out regularly.  I eat healthy 80 percent of the time.  The pressure in my chest started to mount and the tears were about to bubble over…in public.

My husband senses my momentary weakness and inquires within.  As I explain to him my frustration, he gently says, “Well, the weight has a way of sneaking on.”

Busted.  Confirmation that my fear of gaining weight over the winter was indeed just validated by my sweet husband.  Goddammit.

I started a new workout called “Insanity” the very next day.  Yes, I did.

I started a strict monitoring of my caloric intake, reducing the number low and I promptly started punishing myself for the recent weight gain.

I KNOW what to do.  I do.  I really do.  I was very successful two years ago in taking off weight and was at my peak fitness in a very long time.

I KNOW what sets me off.  I really do.  I go in spurts with meal planning, advance food preparation, and diversions for when stress kicks in.

I KNOW what exercise I love.  I really do.  I love to run.  I love cross fit type workouts.  I love to hike.  I love to bike.  I do not love to swim but I appreciate the alternative workout it gives me.

So what is my problem?

I do not know.  However, I do know that I will pick up the momentum and work hard.  Again.  The hundredth time since marriage and kids and work and life.  Perseverance.  It is one of my greatest traits. 

In the meantime, does anyone know Jillian Michaels?  I could use some time with her.

Thursday, June 13, 2013

The Midnight Hour

The midnight hour:  is that hour not something for young twenty-somethings, who have just begun their social activities?  Maybe many of us relate to the midnight hour as that last feeding, the time when our little one would sleep a solid five or so hours (we prayed) before arising again with the hungry cries.  What is it about aging, that staying up to midnight is about as appealing as that annual nether-region doctor appointment?

Having said all of that, who on EARTH would consider a midnight run?  A literal run:   jogging on two feet, in the darkest dark of night for exercise, blinking and moving for entertainment, and solely for fun?

Yes, that would be me.

BUT, kindly  let me tell you about it, how one midnight run forever changed me, how the miles offered me a freedom like I had yet to experience in my life.  

Remember in Girls Night Out: RTB Style, I signed up for the crazy race that consisted of 200 miles over 24 hours with 11 other teammates?  Yes, I know you do, as you shook your head and mumbled what a nut I am.  I keep going back to one of the three legs I had to run; and with reflection, I keep savoring the path I followed that evening……wait, morning…..oh heck, smack dab middle of the night run.

At one of our planning meetings, I realized that I was in van #2 and the first runner in said van.  I quickly began trying to guesstimate the approximate times I would be running during this 24 hour period.  I determined that my first run would be around 3-4 pm on Friday, my second run likely 1 am on Saturday and my last run around 11 am on Saturday.

Who runs in the dead middle of the night?

Yes, that would be me.

Fast-forward to Friday, May 17th:   I was eagerly anticipating the text message from my teammate, the text that would let me know what time the runner would be coming in to pass the baton to me.  Van #1 is filled with lithe women who run REALLY fast.  You know, for a “fun” race – they were flying in ahead of schedule with each passing leg.  I was given a warning that I should expect runner #6 in about 11:45 pm.  I took off at precisely 12:08 am into what was supposed to be a 6.5 mile run, the longest of my three legs. 

The conditions that early morning were perfect:  it was 50 degrees and dry.  I was blinking like the bad guy Dynamo in the Arnold Schwarzenneger movie, "The Running Man".

From head to toe I was lit up:   headlamp, now THAT is a sexy look; blinking boobie light; blinking back light and a reflector vest that would make any DPW worker envious.   I was NOT going to get hit by a car in the middle of the night (but my teammates thought I might get eaten by a bear or perhaps sprayed by a skunk).

I started out on my run on a main road somewhere in Hopkinton and quickly diverted onto a country bumpkin-like road where it was literally PITCH BLACK.  My heart started to race a little more than intended for a jog.  I looked ahead as far as I thought I could see and there was only darkness.  I turned and looked behind me to see the light pollution of the lone gas station fading away in the distance.  There was NO one else around me.  I rolled my ankle.  Dang, this road was laden with pot-holes and divots, all unseen to me.  I tried running with my head down a bit to light up my way, but I realized that would be unwise for another six miles and took my chances as the road started to wind. 

Suddenly, I looked up and I was struck by the clarity of stars in the sky above me; highlighted by the light of the nearly full moon.  The moon would guide me to the finish.  My heart was calmer as my mind took in the absolute beauty of the middle of the night.  The overwhelming smell of spring lilacs filled the air as my breaths became steadier.  As the road became a bit more populated and more residential, I saw blinking lights on runners ahead of me in the distance.  Soon thereafter, I would start to hear regular pounding of approaching footprints behind me, followed by affirmative words of praise: 
“Good job!  Keep going!” 

“You’ve got this!”

“What a beautiful night for a run!”

It was a beautiful night for a run.  I followed the yellow reflector arrows to ensure I was on the right path and on my way to my transition area.  I kept running and running and running and running.

I had set my GPS on my phone in the event that somehow, I should get lost.  I was incredibly happy when I realized I had passed the six mile mark, only a half mile remained between me and the next runner.  As much as I enjoyed running the midnight hour, I was getting tired and 60 minutes in, I was ready to pass the baton.  I kept running and running and running and running.  I soon became a little freaked when I realized I passed the seven mile mark.  I knew I had not missed the transition area because there were signs everywhere and runners around me.  I started to panic because now, mentally, I was done – my mind was prepared to run six and a half miles and I was at seven – with no transition area in sight! 

My feet got heavier; they started to pound and scuff the pavement below.  My toes were feeling the friction of my super cool, but super uncomfortable Wonder Woman socks.  My team was waiting for me and I had told them I would be done over ten minutes ago.  No, I could no longer see the stars or the moon!  In fact, when a fellow runner encouraged me to run alongside of him and finish together, I was rather curt and asked where the damn transition area was.

When I finally crossed the transition line, my GPS said a total of 7.69 miles.  Yes.  A whopping 1.19 miles LONGER than I had I had anticipated for my long run.  However, I did it.  I enjoyed it (we will exclude that rant from the past half mile).  For the first time in a very long time, I felt free.  I managed to “escape” my world for a little over an hour.  There were no children needing me; there was no stack of bills to pay; there were no work deadlines; there was only me, myself and I present in that journey.  I was free.

Have you ever felt complete freedom (even if momentarily, like my experience above)?  If so, tell me about it.

Thursday, June 6, 2013

Thinking Pink

Recent news this week from the Susan G. Komen foundation shook the pink world for a bit.  The charity announced that it would not be continuing the famous 3-Day Walk in many major cities after this year, including in our very own Boston.  TheKomen publicists explain that the Boston market especially has been on a downward spiral for the past four years; essentially Komen can no longer afford to have the walk.

Basically, for those of you who are unaware, Komen has thousands of walkers each year who sign up in pink solidarity to walk and raise money – millions of dollars – for their non-profit charity.  Each person who signs up is on the hook for a minimum of $2300 in fundraising.  Boston alone has raised a pool of $3M+ year after year.
I, personally, have supported and donated to several people in the area with their walking endeavors in the name of pink.  I always have and I always will; however, now I am being a bit more selective in where my dollars end up.

This is not a Komen-bashing post whatsoever.  Without Komen, many of the research and advances made would not be available to the breast cancer community.  However, with all the recent ill-fated business choices behind Komen, and now the demise of the 3-Day Walk in several major cities, one cannot wonder if the public perception has caught on to the reality of true financial bottom-line of such vast pink corporate vehicles.

Komen is one of the better breast cancer charities out there, with a return of about 83 cents of every dollar donated being directed to the “cause”.  However, in 2010, Komen had an operating budget in the RED by nearly $4.5M.  Yes, $4.5M dollars.  See for all your inquiries about any charity and their financial reports.

Again, I do not wish to bash Komen.  I am simply making better choices about where to put my donated dollars as I have a limited amount to donate annually and honestly, I want more bang for my buck.

On top of that, tomorrow, June 7th, 2013 marks my five year (YES!  5 YEAR!) chemo-versary.  You have heard me say it before  in my prior post called Rebirth and you will hear me singing it from the rooftops on Friday!  I have dodged the cancer recurrence bullet (knock on wood) that has been on….my….tail……every three months for the past five years.  Only another fellow survivor will truly understand the weighted feeling of being followed by this little cloud of despair for so long.  As much as I tried to shoo this little cloud away from me, the uncertainty, the fear and the dread hung around close enough to be a humble reminder that my so-called NEW life, my rebirth was shrouded from that feeling of freedom until the remarkable five year date. 

In any event, about a year after my treatment wrapped up, I was courted by nearly every breast cancer charity out there because my story is indeed unique.  Sure, cancer while pregnant is not as staggering as one would think (about 1 in every 3,000), but it is still terrifying;  to have mother and child come out surviving and thriving is well, remarkable.

I knew I could not give myself to each and every charity, even though I wanted to.  I tend to give all of myself when I do give, so it was a matter of finding what charity was a fit for me and my personal beliefs.

I was shocked to find out that many of the larger breast cancer charities, not just Komen, were returning very little of the cents on the dollars to the actual cause itself.  One charity was as low as seventeen cents on the dollar!  Yes!  What that means is if you donated $10 to my Relay for Life walk in 2008, only $1.70 of your donation made it through to the cause itself.  Ouch.
I did not feel good about soliciting funds from my friends, my family and knowing that only a mere portion of the donation was contributing to the greater good.

Further, as I met more and more women who went through breast cancer (or continue to go through it), I realized that many of these larger charities denied patients the very services they claimed to provide.  Oy.  I was devastated.

Additionally, the superb medical team that saved my life – and that of my youngest daughter, my then unborn baby, shared with me the limited resources they have to improve the quality of care they provide to the sea of women struggling to survive out there.  Wait, what?

In my commiseration with a cancer advocate from the Worcester area, we realized the need to return to our local roots was great.  PINK Revolution was born. 

 PINK Revolution was created as a means to instill the old cliché:  it takes a village.  Yes, we need to return to our roots and start caring for one another on a personal level.  Maybe it is easy to click online and make a donation to a breast cancer charity.  However, what about having a greater impact or at least knowing that online donation is truly being put forth to the cause in its entirety?

Yes, PINK Revolution is run by volunteers:  the Board of Directors is comprised of doctors, nurses and staff from UMass Memorial Comprehensive Breast Cancer Center, as well as an expert in the needs of women during/after breast cancer providing wigs, prosthetics, and so much more, as well as survivors of all ages, those that have lost a mother/sister and a very determined cancer advocate.  We all do this for no benefit to us other than to ensure pervasive change in the breast cancer world and making a difference for those out there suffering.
Yes, PINK Revolution is a work in progress since we keep operating costs to a bare minimum by soliciting volunteers for all of our needs (i.e. legal, financials, and more).

Yes, PINK Revolution has secured tremendous milestones in a few short years:  namely, joining with UMass to purchase a state of the art tomography machine, one of only five in the world, so that patients at UMass have access to better screening tools with less invasive processes; funding a published researcher investigating the pathways of triple negative breast cancer to identify possible better treatment options; funding better patient care so that those who have battled may live a better quality of life after cancer care; and providing Wellness Seminars to provide more comprehensive education and awareness for present and future empowerment in the world of breast cancer.

There are so many ways to help, it is ridiculous.  Sometimes it is not all about walks and simply donating money.  PINK Revolution  has set up meal schedules, rides, special liaisons for pay it forward type endeavors.  PINK Revolution is here for each and every patient, sometimes it is just a listening ear or an embracing hug, but perhaps it’s helping a patient advocate for better care or a sense of comfort.  Human to human, hand to hand, returning the power of touch – the village mentality is “in” again.

Help me celebrate my five years of being alive.  Help me hug not only the child I carried in utero while fighting for both of our very lives, but for my other two children and my husband who helped me in my darkest possible days.  I am here for the duration and only because of all the progress the pink world has accomplished in the past few decades.  I am eternally grateful, and yes, I owe my life.

Here's to living STRONGER and helping thousands of others to live STRONGER as well: