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.

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Rock Steady, part II

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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.

 

Rock Steady

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In my quest for Parkinson’s Disease (PD) symptom relief  and to slow the progression of the disease,  I have pursued various forms of exercise, group classes, natural dopamine, meditation, acupuncture, plant based, gluten free, no added sugar diet and prescription medication, all to no avail.

The last time I took a group class (Dance for PD® at Lincoln Center) for PD patients, I left it in tears, seeing how much I have lost to this illness and also seeing in the other participants, my potential future as the disease progresses.  The good news is, not everyone experiences the same or all the possible PD symptoms and the disease progresses at different rates in everyone.

This week, I attended my first  Rock Steady Boxing for PD class at Epic Martial Arts in Sag Harbor, NY.  It did not start out well for me.  There were about 10 of us, mostly men, all different ages and we were all at different stages of the disease; some with  walkers and canes , others dealing with tremors and some like myself, in the earlier stages of PD with no glaring symptoms.

One of the students (I will call her Mary) walked into the matted exercise area and tripped and did a face plant on the floor.  As she laid there crying, (one of the assistants immediately went to her aid), I could feel her helplessness, vulnerability and despair and it vividly brought back the memory of when I fell on my bathroom floor back in July.

Tears welled up in my eyes as I turned to a fellow student next to me and said:  “There but for the grace of  God go I”.  He knowingly and sadly shook his head in agreement.  All of the students  sitting there could easily empathize with Mary, either having fallen previously or realizing it was probably in their future.  It kind of reminded me of what Steve (my life partner who took his own life in 2015) would always say about bike riding: “There are 2 types of cyclists, cyclists who have crashed and cyclists who are going to crash.  With PD, it is probably inevitable that at some point, those  of us afflicted with this disease will fall if we haven’t already.

Michelle the instructor was a great motivator and in no time, the sad cloud of Mary’s fall dissipated and Michelle had us all engaged in the workout.  Mary, with great dignity and grace dusted herself off and joined the rest of us in class.

At one point during the workout, Michelle was coaching us to go faster as we were punching the heavy bags.  I thought this was hilarious since “fast” is no longer part of my vocabulary and I couldn’t stop laughing.  One of my most visible PD symptoms is slowness of movement.  With this disease, it is so critical to maintain one’s sense of humor, something I struggle with on a daily basis.  If I don’t laugh at myself, I will crawl up into a ball and waste away.

This class will be good for me.  I will not be alone in my struggles and I will form a camaraderie with people who  share the same challenges of PD that I have.  From what I saw in my first class, all seemed to be determined to fight this cruel and insidious  disease of countless losses and not give in to it.

Since my PD is progressing, I am becoming more and more cognizant of the lessons I need to learn from this disease and being in the class with fellow PD sufferers really brought it home for me.   The first lesson  is to always be mindful and focus on one thing at a time.  As an example, no more fumbling in my bag for something while I am walking as this is a sure way for me to lose my balance and fall.  The second is to be grateful for the simplest of things I have always taken for granted,  as any day, I can wake up and what was previously done without thought , now, can only be  performed with great difficulty.    These were daily rituals I had never give a second thought to;  things like buckling a seat belt, folding sheets, putting a key in a lock; all are such simple, mundane tasks.   With PD, they can become monumental, overwhelming and so frustrating.  One never knows what or when one  will lose the ability to do a routine task; something  you never thought twice about in the past.

My sincerest hope is that Rock Steady Boxing will be something that can help  slow down the progression of this disease for me.  My goal is to write a blog in a few months that can attest to the success of this program for me and that I can be a poster child for Rock Steady Boxing.  Stay tuned…

Frozen

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According to WebMD.com, in Parkinson’s disease, freezing (sometimes called motor block) is a sudden, brief inability to start movement or to continue rhythmic, repeated movements, such as finger-tapping, writing, or walking.

Well, my first episode of freezing happened this week.  I had just finished my bike ride and unclipped my right foot from the pedal and went to unclip the left foot.  Alas, the message I was trying to get my brain to send to my left foot was not connecting.  My left foot stopped moving, no matter how much I focused on trying to wiggle it out of  the pedal, the foot  wasn’t budging.  I even tried to take off my bike shoe and that didn’t work either.

So, there I stood, in the middle of the road (good thing it was early and on the grounds of my community; so no traffic), leaning over my bike, one foot on the ground and one foot stuck on the pedal, trying to figure out how I was going to get myself out of this predicament.  I knew that eventually, security would be making their rounds or one of my neighbors would have seen me, but, I was still filled with despair and did not want to be found frozen.  I don’t recall how long I was there, but eventually, I did ‘ defrost’ and  was able to unclip.

Clipping in and out of my bike pedals was something I had done without thinking for years.  Once again, PD has robbed me of such a simple task I had always taken for granted.  That is the way it is with this disease.

On the bright side,  I got back on the bike the next day but decided not to  clip in the left foot.  There is always a work around for the things I have lost due to this disease, but it does not make it any easier.

 

 

Suicide is a selfish act. NOT!

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Today, for the first time since Steve died by his own hand in 2015,  someone said directly to me;  “suicide is a selfish act”.  I was not angry or insulted, but rather very sad that people still believe this to be true.  If anything, in the mind of the one taking their own life, it is a selfless act.  In Steve’s case, in his writings and in discussions he had with me, more than once he indicated that he felt he was a burden to those that loved him.  In his suffering mind, Steve felt we would be better off without him.

Based on my experience with Steve, I believe his mind was so tortured and he was in so much mental pain, he was not thinking rationally when he took his own life. That is not what I would call selfish.  Steve was the kindest, most giving and thoughtful man I have ever known and he would never do anything to intentionally hurt anyone.   As human beings, it is difficult for us to relate to mental pain and empathize with what someone so afflicted is feeling, hence one of the reasons suicide is so stigmatized and misunderstood.  We can easily understand physical pain since at some point or another in our lives we have experienced some form of it.

I suffered situational depression in the months after Steve died and believe it was in no way even close to what Steve must have felt suffering from clinical depression.  The despair and hopelessness I felt were so tortuous I can’t even imagine what Steve was going through in his final days.  A few weeks before he died, Steve told me he was so afraid.  He could not or would not share with me what he was afraid of.  Only now do I realize how much he must have been suffering.

I think it is easier for people to say suicide is a selfish act because it may be an effort on their part to make a loved one feel  better since they may think it takes the blame away from the suicide survivor(s) or perhaps it is easier  for them to say rather than really trying to process why someone would take their own life.  Sad to say, being a suicide survivor gives one much more perspective.  I hope to use this perspective to educate others.

Hearing these words today was a good thing as it has strengthened my resolve to continue to inspire conversation about mental illness and suicide with the hopes of dispelling myths like “suicide is selfish”.

Making Peace with Suicide

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March 15, 2015 was the darkest day of my life.  It was the day I lost my life partner, Steve Tarpinian, to suicide.  We had been soul mates for over 33  years.

Have I made peace with his suicide?

If I separate the cause of Steve’s death from the tragedy of forever losing the love of my life, I can say yes.

I have come to terms with the fact there is nothing that I could have done that would have resulted in a different outcome.  Steve’s mental anguish must have been so intense, so much so, that he lost sight of all the love surrounding him.  He had already tried suicide once before and failed, so it seems out of his hopelessness, he was determined to try again. That is how insidious the disease of the mind is.

The first two years after losing Steve were filled with  so many unanswered questions;  ; “Why, he had so much going for him”, “What if I had said…” , “What if I didn’t say….”, “What could I have done differently?” , so there was no possible way for me to make peace with his suicide.  At times these questions still haunt me, however, for the most part, I have accepted the fact that Steve made up his mind on his course of action and nothing anyone could have said or done was going to dissuade him.  The suicide and mental illness collateral damage such as destroyed relationships, being blamed for his death, uncalled for vitriol aimed at me and judgments on how I grieved are fading from my memory. Hence, I believe I have finally made peace with his suicide.

Losing the love of my life is what I still struggle with even though I realize that this is now my new normal  and that Steve and I will not grow old together and share the same pillow.  There is a huge hole in my heart that can never be filled.  Steve and I had a once in a lifetime relationship, filled with a deep respect and love for each other.  When we love deeply, we grieve deeply.  I  am  forever changed by Steve’s death.  Yes, I still have days with meltdowns and not wanting to get out of bed in the morning, but, I am only human.  My tears and sadness over the loss of Steve  is now a part of who I am.  As such, I have come to accept and embrace it.

My grief journey has taken me in directions that have helped me cope with my great loss. It is a daunting task and I must continuously remind myself to stay on track and not to fall back into the bottomless  pit of despair.     I realize  that trying to make peace with losing Steve, regardless of the cause of his death, will be a lifelong commitment that will not come easily for me.

How do I cope with my loss?

Living in the moment  and trying to pay it forward  have helped me the most in moving forward in a life without Steve.

Within 7 months of Steve’s passing, I wrote and published his memoir; Slipped Away, a single minded task that did not permit me to wallow in self pity.  Yes, it was draining, but, I was able to re-live many happy moments in my life with Steve.  I wanted Slipped Away to be more a celebration of Steve’s life and how he positively impacted so many people rather than a book about suicide.  The focus it took for me to complete the book  truly allowed  me to live in the moment.

Since publishing, I now do book talks, write blogs and use social media in an effort to inspire conversation about suicide and mental health issues.  These  topics, even to this day, are still stigmatized and most people are embarrassed to talk about these issues and would prefer to stick their heads in the sand.  As a suicide survivor, I have experienced this first hand.

In an attempt to try and have something  good come out of such a tragic loss, I wanted the telling of Steve’s story to allow him to continue helping people even though he is no longer with us.  The proceeds of  Slipped Away are donated to Project9line.org;  a  non-profit organization of veterans helping other veterans deal with depression and PTSD that provides outlets for them in the arts (writing, music, comedy etc.).    It was through Project9line that  I was introduced to AirborneTriTeam.org (ATT).  ATT’s mission is to promote teamwork and endurance sports to help veterans “… better their life style, change their attitude towards life and give them a purpose”.  There was a great synergy with myself and ATT since Steve was an Ironman triathlete many times over and the company Steve built was responsible for the foundation of the sport of triathlon on Long Island.  Supporting  the veterans of ATT in their mission gives me a sense of purpose.

Steve was not a veteran, however, even though the paths that lead our veterans to suicide are different than Steve’s, they shared the similar pain of hopelessness and mental anguish.   The end results of suicide are the same, the tragic, sudden loss of a precious life and the loved ones that are left behind, feeling the terrible heartbreak  of loss, with so many unanswered questions, wondering if they could have done something different to help their loved one.

Never in my life I would have thought I would be affected by the suicide of a loved one, let alone trying to make peace with suicide.  The time has come for me to accept my reality and as a suicide survivor, I can now say I have made peace with suicide.

www.SlippedAway.org