Finding my way back to dance

 

“Nobody cares if you can’t dance well. Just get up and dance. Great dancers are great because of their passion.”
― Martha Graham

Last week, I taught a jazz dance class at my community.  I was very apprehensive since I have lost so much ability due to Parkinson’s Disease (PD).  Where I was once fluid and graceful, I now feel inflexible, rigid and non-rhythmic.

For over thirty years of my adult life, I have been dancing (jazz, ballet, tap).  Although I had a 9-5 corporate job, there was a period of about ten years where I would take up to fifteen hours of classes every week and I also performed in a local Long Island dance company for several years.  Dance has always been an important part of my life.

The last time I took a dance class was shortly after I was diagnosed with PD in 2015.  It was Dance for PD® at Lincoln Center in NYC.  I left the class in tears, since it re-enforced for me what I have lost and I also saw my potential future in the other participants.  The last time I taught a dance class was probably over twenty  years ago at my gym, and before that, I was a GO (employee) at the Martinique Club Med in the late 1970’s, teaching jazz dance classes there for a few months.

Needless to say, I was a little rusty and also very nervous about teaching this class in my new environment.  My confidence in my dance skills is virtually non-existent. Something that had once come so naturally to me has now been eroded by PD,  I kept thinking  to myself; “Will anyone show up?”; “Will they notice my technique failings as a dancer?”; ” Will the participants be bored?”;  “Will they like my music choices?” and on and on.

Of course, all of my fears were unfounded.  About 13-15 people showed up; two were men, many of the participants were in their 70s-80s and at least three were over 90.   Some showed up with their walkers and some took the class seated.  They were all so supportive and just happy to be there and practicing movement.   Every single one of them inspired me.   They were non-judgmental and eager to learn.  Dancing gave them freedom of expression, the ability to exercise, all while having fun and we were all able to laugh at ourselves.

The class ended with smiles all around and the students ended up teaching me far more than I taught them.

“The moment in between what you once were, and who you are now becoming, is where the dance of life really takes place.” —Barbara de Angelis

 

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Rock Steady, float like a butterfly

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“Float like a butterfly, sting like a bee” — Muhammad Ali

Rock Steady boxing classes are not getting any easier for me and that is to be expected.  Sensei Michelle instinctively knows how to motivate and push us and when to back off.  Depending on how Parkinson’s Disease (PD) may be affecting me that day,  some classes are harder than others.  I have read that people with PD have to work twice as hard during physical activity than those without PD due to our lack of dopamine.  I can certainly attest to that theory!

Yesterday, one of our drills was “shadow sparring”, which is when you are throwing punches at a partner, but not making contact.  I was struggling to keep my energy up for this.  When “Eye of the Tiger” from the movie, Rocky started playing, it brought me back over thirty years to my dancing days.  That song was the music for  one of the first choreographed routines I ever performed on stage.  I could not focus on being in the moment and my sparring was getting slower and slower as I was having a mini pity party for myself.  I really had  to dig deep to focus on my boxing and not on what I once was capable of doing.

A little later in the class, another drill consisted of punching and ducking punches.  For the briefest moment, another door to my past life of dancing opened; only this time, I could feel I was gracefully  performing  the drill.  I had strength, power, rhythm and speed for maybe  30 seconds.  I know it was real as my fellow class members could see it and they cheered me on.   It was such an incredible high, but so fleeting.  As quickly as that joyous moment came, it was gone and I was back to my normal, slow, non-rhythmic self.

After being so blissfully high during my “butterfly” moment, I came crashing down at the supermarket later in day.  While I was scooping flour into a plastic bag, my left hand stopped working and I dropped the open bag on the floor and spewed flour all over myself and the surrounding areas.  What a mess I made!

This is a typical roller coaster ride of a day in the life of a person afflicted with PD.  The unpredictability of this disease is so challenging.  A day can have hopeful moments (few and far between for me) where one can feel like their pre-PD selves, but then,  we are reminded of  our reality and what we have lost to this disease and our hopes are cruelly dashed.  These ups and downs in themselves are exhausting..

My Rock Steady journey will continue, if only to feel the joy of opening that door once again, even if only a crack, to the rhythm and athleticism I once enjoyed.

 

“The fight is won or lost far away from witnesses – behind the lines, in the gym, and out there on the road, long before I dance under those lights.”  Muhammad Ali

 

http://www.SlippedAway.org

Rock Steady – Dig deep

 

After two months of Rock  Steady classes, two times per week, I cannot say I notice an improvement in my Parkinson’s Disease (PD) symptoms.   I feel  I am progressing  rapidly with my fine motor skills worsening, fatigue increasing and I am slow moving in most elements of daily living.  However, my symptoms could be worse, but Rock Steady may be helping me slow the progression somewhat.   That is the unpredictability of this disease.

On the plus side, there is so much to love about Rock Steady.  I am doing an activity with people  just like me who struggle with the same challenges of this disease.  We all help and support each other; the camaraderie is off the charts and our coach is so encouraging and compassionate.  After one class, a participant couldn’t  unwrap the tape that goes on our hands under our gloves and I was so happy to be able to help him.  A few minutes later, I couldn’t put my coat on; he was right behind me and offered a helping hand which I graciously accepted.

What is so daunting for me while taking this class is how I am having so much difficulty trying to ‘dig deep’;  something I was always able to call on as a cyclist and a dancer.   Is it because of the PD induced symptoms of apathy and lack of motivation or do I have no more dopamine left that day to fuel me or am I just out of shape?  Once again, another facet of the unpredictability of this disease that makes it so difficult to find relief from the symptoms.

‘Digging deep’ never came easy to me, but I would always persevere.  As a dancer, I could always push through doing the choreography one more time in an exhausting rehearsal even though we had been dancing for several hours after I had put in a full day at my 9-5 job.  As a cyclist, I remember one ride in the mountains of Mallorca, Spain,  where I was separated from the group in a hurricane-like storm.  I had to make it back 10 miles to the hotel alone on my bike, going downhill on the steep mountain switchbacks in a pelting downpour with gale force winds. I was able to ‘dig deep’ and make it back in one piece without crashing.   Once again, I was able to find that ability to ‘dig deep’.

Now, in Rock Steady, I am once again trying to ‘dig deep’ because I truly believe it will help alleviate my PD symptoms in the long run.  My ‘digging deep’ in the past seems like a piece of cake compared to what I am dealing with now.

As Steve would always say about his German client focused cycle training camps in Mallorca; “Dies ist kein Kindergeburtstag” (This is no children’s birthday party).

And so it is with Rock Steady boxing…

Suicide Stigma; alive and well

Some  recent experiences have sharpened my suicide awareness focus since Steve, my soul mate and best friend for over 33 years, died by suicide in 2015.  In the two years since Steve passed, I see that the suicide stigma is still alive and well.

Recently, unaware of Steve’s death, an acquaintance asked me about my husband.  When I told her how he died, her startled look and response blew me away.  She said: “Who told him to do that?”.  Clearly this was said out of ignorance and discomfort.  I was not angry, but rather sad, both for her and Steve and myself, in that she was shocked and did not know what to say.  I believe this is mainly because of the stigma of suicide, an uncomfortable topic no one wants to talk about it.

The second experience was with a woman who lost her son to suicide.  I asked her if she wanted a picture of him to  be included in a memorial photo collage that was being shown at an International Survivors of Suicide Loss Day event (sponsored by the American Foundation for Suicide Prevention (AFSP)) on November 17, 2018.  I believe she struggled with how to respond and after giving it some careful thought, she declined and in so many words indicated her decision was based on how the rest of his family might feel about her openness in publicly acknowledging the cause of her son’s death.    I respect her decision as we all need to come to terms with the suicide of a loved one in our own time.   But, it should not have to be such a painful and divisive struggle for the suicide loss survivors.  If this was a memorial to those who died of cancer or heart disease, would the same stigma exist?  Would her response be the same?  I think not.

In the early days after Steve passed, I was guilty of feeling shame talking about Steve’s suicide. After he died, I told a local reporter  he could NOT put the cause of Steve’s death in his story. Not too long after, I realized I was perpetuating the suicide stigma with my silence; only natural since I, along with many in today’s society felt it was a taboo topic, too embarrassing to talk about publicly.

However, some progress is being made to help lessen the suicide stigma. Earlier this year, Logic, a popular young singer, released a powerful suicide prevention anthem.  The title of the song is the toll free suicide prevention hot line: ‘1-800-273-8255′ and the lyrics are written from the perspective of one who has called the hotline because they wanted to end their own life. The hotline has received record call volumes since the song’s release.

The fact that the well-known and beloved actor and comedian Robin Williams took his own life was not suppressed by his family or in the media.  The suicides of two recording artists, only two months apart earlier this year, Chris Cornell, lead singer of Soundgarten and Audioslave and Chester Bennington of Linkin Park were not concealed .  The more dialogue there is about suicide, perhaps the survivors of suicide loss will not be burdened with trying to conceal the cause of the death of their loved one.

According to AFSP, suicide is the 10th leading cause of death and over 44,000 people die by suicide each year in the United States.   Many suicide attempts, however, go unreported or untreated. Surveys suggest that at least one million people in the U.S. each year engage in intentionally inflicted self-harm.  These numbers are alarming  and the fact that most people do not want to talk freely about this cause of death is even more alarming.

Maybe someday, in the not too distant future, people will be able to talk openly about suicide.  Until then, I will continue to be very vocal about Steve’s story.  I believe if we can eliminate the stigma, those who struggle with thoughts of  taking their own life, will not feel  embarrassed  to  reach out for help.  Also, for the loved ones of  those that continue to be lost to suicide, perhaps the permanent sadness in the eyes of  the suicide loss survivors will lessen slightly when they no longer have to carry the suicide stigma burden which only deepens that sadness.

 

We are all connected – Veteran’s Day 2018

Because of my associations with Airborne Tri Team (ATT) and Project9line (both non-profit veterans’ organizations of veterans helping other veterans),  people have asked, if not wondered, whether Steve and I were veterans.  Although we both have veterans from several wars in our families, neither of us have ever served.  I chose Project9line as the proceeds beneficiary of Slipped Away  because of their unique approach to assist returning veterans who may be suffering from PTSD and depression by providing outlets in the arts for them.

Patrick Donohue, the founder of Projectline introduced me to  Ron Hurtado, the founder of ATT (their  mission is to  promote teamwork and endurance sports to help veterans).   Since Steve was an 18 time Ironman triathlete who helped lay the foundation for triathlon in Long Island and was so well known in the triathlon community , Patrick thought there would be a good synergy between ATT and myself.

When ATT members compete in a triathlon, after all the participating members have completed their race, they will gather at the finish line to do 22 pushups to honor their brothers and sisters lost to suicide with the hopes of raising awareness of the alarming numbers of veterans who take their own lives on a daily basis.  Then they will add an extra push up in memory of Steve Tarpinian and all the other civilians lost to suicide.

Steve and the veterans that take their own lives, although their paths to suicide may be very different, I believe they do have some important things in common.  They were in unspeakable pain, suffered tremendous mental anguish and feared living more than they feared dying.  There is the loss of a precious life and the loved ones left behind with so many unanswered questions, wondering if they could have done something different.

So, although Steve and I were not veterans, my intent is to  continue to raise awareness about suicide so that there can be open  conversations about it.  How can anything change unless we talk about it freely?  In addition, by  supporting the missions of Project9line and ATT in whatever way I can, hopefully, together, we can help  save one veteran at a time.

I am humbled that the veterans of ATT have honored Steve’s memory.  We are all connected.

Rock Steady, part II

rock steady2

In an effort to alleviate my symptoms and/or stop the progression of Parkinson’s Disease, I  have been taking Rock Steady boxing classes  for several weeks now and I had my first meltdown last week.

My tears started to flow as I was doing a footwork drill , similar to a chassé (step together step), a move I had done once with grace, rhythm and fluidity when I used to dance.  Now, I feel like I have lead legs and it takes every bit of my willpower  to re-create the mechanics  of a once simple step for me.  When I wallow in self pity, I think to myself, what a cruel twist of fate it is that I practiced movement (dance, cycling, race walking,  tennis, roller-skating) most of my adult life and now I am afflicted with a movement disorder.

With the support of the instructor and those around me (the surrounding compassion and empathy was palpable), I was able to compose myself and finish the class.  Others in the class who are more advanced in their disease progression than me, continue to inspire me.  One participant does not rely on his walker as much as he did when we first started Rock Steady.  This gives us all hope that we too can thwart this incurable, progressive disease of continuous losses.

What I love most about this class is how the instructor fosters camaraderie.  We are all part of a team united in a common goal to fight the progression or possibly reverse the relentless symptoms we struggle with on a daily basis.  It is remarkable how our symptoms can be very different from each other, but no less daunting.  Where  one of us can do a drill effortlessly, another may struggle and fumble.   One thing we are all cognizant of is that this disease does not discriminate.  What we can easily  do today may be robbed from us tomorrow.

No one (myself included)  seems to be self conscious about not being able to master or even perform  a move.  We are all so focused on doing the best we can with the cards we have been dealt.  Knowing that I am not alone and there are others  who are valiantly battling the symptoms of this disease strengthens my resolve.

l will not go down without a fight.

 

 

…and then there were two

 

October 22nd, 2017 was the American Foundation for Suicide Prevention (AFSP) “Out of the Darkness” 5k Jones Beach walk.  This is the third time I have participated in this walk since Steve passed.

Last year, a friend who lost her Mom to suicide shared with me that as the years go by, there are fewer family members and friends that show up to this annual walk.   She was so right.  However,  I do understand, people move on with their lives and deal with their tragic loss and remember their lost loved one in their own way.

This year, Judy, my best friend since we were in kindergarten accompanied me, as she has for the past two years.   Jones Beach holds many memories for both of us.  Judy and I spent many of our summer teenage years at Field 4 and Central Mall, either hitch hiking  or squeezing on to the ridiculously crowded bus to get there.  And, of course for me, I have the precious memory of meeting Steve at Field 1 in 1981, plus fond memories of all the years I would bring him his lunch when he was a full time Jones Beach lifeguard.

This year, there are two things that have stayed with me after the walk. The first is the photos of lost loved ones on the railings positioned throughout the boardwalk.  It was the text below the photo that caught my eye.  Many of the comments indicated it was the smile or laughter of the lost loved one that was missed the most.  And so it is with Steve for me; I miss his infectious smile and belly laughs.  There are too many like Steve, who suffer silently that are so good at hiding their mental anguish.

The other recollection that stays with me is the number of young people (teens, early 20s) who were doing the walk in a friend’s memory.  This is a bad news-good news scenario; the bad news being that too many  young people are giving up on life.  But, the good news is that unlike my generation and my parents generation, these young people are freely acknowledging suicide and appear to be immune to the stigmas and taboos my contemporaries and earlier generations have placed on suicide.  This gives me hope.  I believe suicide awareness is growing and the stigma may eventually dissipate, just like the stigma of breast cancer has faded over the years.

Progress is being made.  The suicides of two famous recording artists, only 2 months apart earlier this year, Chris Cornell, lead singer of Soundgarten and Audioslave and Chester Bennington of Linkin Park were not suppressed by the families or the media.

In 2017, Logic, a young popular singer released a powerful suicide prevention anthem.  The title of the song is the national toll free suicide prevention hot line: ‘1-800-273-8255′ and the lyrics are written from the perspective of one who has called the hotline because they wanted to end their own life. The hotline has since received record call volumes since the song’s release.

So, although it was just Judy and I today remembering Steve, upon reflection, instead of being sad that people have forgotten about Steve, I now have hope that someday walks like this to raise suicide awareness will become a thing of the past.