Pity Party

In Greek mythology, Sisyphus was condemned to an eternity of rolling a boulder uphill then watching it roll back down again. At times, I feel like a modern day Sisyphus, especially this past week.

I give up; today, I am bringing out the party hat, pity party hat, that is.  I will refer you to Chapter 6 of Slipped Away for finding out about pity parties through Steve’s eyes.  Many perceive me as strong and dealing well with the cards life has dealt me.  However, as it was with Steve, things are not always as they seem.  I write because it is cathartic and I usually can convince myself with my own words that things will turn around and get better, hence most of my blogs end on a positive note.  However, I am struggling to be positive right now.

This was a particularly bad week.  Friends of both Steve and I lost their young daughter to cancer, another friend of Steve’s and myself who was battling ALS passed away, another friend of ours going back to the 1980s is in liver failure and an online friend of mine who has been so supportive of Slipped Away is dealing with some serious health issues.  Being the good  multi-asker I am, I thought for sure I could handle all this.  After all, I have survived cancer, the suicide of the love of my life for 33 years, a diagnosis of Parkinson’s Disease (PD) and moving to a new home over 70 miles away from my roots.  However, my PD symptoms seem to be rapidly progressing so much so, that I wonder how much longer I will be able to live independently.   Sometimes I try not to give any energy to the thought that I have PD, other times, I feel I must accept it.  Refusing to acknowledge I have this disease is a Sisyphean effort in itself.

So, to try to step outside of my misery box this weekend, I decided to drive out to Montauk (a place that holds so many happy memories of my life with Steve) to watch Airborne Tri Team members participate in what was Steve’ favorite triathlon. Along the way, I experienced multiple emotional breakdowns, each one precipitated by passing a favorite place Steve and I used to frequent. I was even staying in the same hotel room Steve and I stayed in whenever he did this race.  Needless to say, I was an emotional wreck and I holed up in my hotel room all night.  I knew I would break down in tears just talking to anyone about something even as mundane as the weather.

Then, the next day, as I was watching the race, I believe a “perfect storm”  (PD symptoms, dehydration, hot sun and emotional state), caused me to pass out at the triathlon.  It was surreal, and I felt it coming on.  As I started blacking out, I slumped to the ground.  I could hear my friend yelling to have someone call 911.  I sensed people rushing around me, heard the sirens and felt the oxygen mask going on my face.  I tried my hardest to sit up and tell everyone I was okay, but it was a futile effort.

I am thankful for the excellent care and compassion of the Montauk FD EMS team.  Since my vitals were okay, I chose not to go to  the hospital.  What was in the back of my mind what a doctor friend of Steve’s once said to us.  He told us the best way to remain healthy is to stay out of the hospital.  Other than feeling like my usual lousy PD self, I will be okay to try to push that boulder up the hill once again.

Since my head was spinning this morning with so much “not in the moment” type thoughts, I decided to take a yoga class to try to clear my mind.  The instructor had each of us randomly pull a card from a deck of wisdom cards she had so that we could reflect on it during our practice.  Of course, my eyes filled with tears after I saw what my card said… “self acceptance”.

I will end today’s blog on that note and take off my party hat.  I have work to do.

 

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I’m still standing.

2013 jm st jones beach 1972 triumph cropped

At times, Steve would get frustrated with me for not listening to and remembering lyrics to favorite tunes.  He deeply felt the emotions expressed in the song’s words and struggled with understanding why I didn’t do the same.  As a dancer for most of my life, I would always be drawn to the rhythm of a song, not so much to the words.

Ironically, now that I have lost my, flexibility, sense of rhythm and my once excellent balance (as such, I no longer take dance classes), I tend to look to the words in songs for inspiration.  Some of the lyrics from two songs recently have come to my mind; “I’m Still Standing” by Elton John and “I Won’t Back Down” by Tom Petty.

Yes, I am still moving forward and won’t give up.

In the past month, I have closed on my home in Wantagh and moved to a retirement community on the North Fork of Long Island.    Along with the death of a spouse and having a personal illness, moving is considered to be a top life stressor.  Nothing like being three for three.  I am still reeling with the loss of Steve to suicide in 2015, the upheaval and turmoil of the two years leading up to his death,  the ensuing aftermath and also with the diagnosis of having  Parkinson’s Disease (PD) six months after Steve passed away.

My entire life has been lived within a five mile radius of where I grew up, causing me to question my decision for moving over seventy-five  miles away from my roots and adding more stress to my life.  Just the selling of the home I made with Steve for almost thirty years was hard enough, add to that the complexities of selling a house.  As an example, the day before closing on the Wantagh home, the buyer’s attorney notified my attorney that the town had no Certificate of Occupancy on file for the house which could have jeopardized the sale.  This, after two title searches from prior house sales and three building permits for the house were approved by the town over the years (house was built in 1935).  I had already moved to my new home and it was not practically and financially attractive for me to have this closing fail.  Luckily, I was able to work it out with the new buyers and we completed the sale.  Of course, signing the legal paperwork to sell the home where I shared so many great memories  with Steve, caused an emotional meltdown for me in the lawyer’s office; not unlike the daily emotional breakdowns I still have on a day to day basis, whenever I see something that reminds me of times spent with Steve, or when I experience something I wish I could share with him.

Although my neurological symptoms seem to be getting worse, I am still committed to halting or slowing the effects of this progressive disease through yoga, meditation, exercise, diet and supplements.  Talk about a “chicken or the egg” scenario,  stress is known to exacerbate PD symptoms.  I did not think the supplements were helping, so I fell off track, using the high cost and move as excuses for not adhering to the strict protocol for following this alternative treatment.  My symptoms have gotten worse since stopping the supplements so, I have tried to resume the protocol, only to get very sick at least once a day, which has been quite a disappointment, causing me to re-evaluate my treatment options.

Fast forward to my new home.  It is truly beautiful and peaceful.  (Peace in my life has been so elusive for the past few years).  However, my observation thus far, is that most of the population here is at least ten  to twenty years older than me, giving me pause to think that I will age quicker.  Most of my life spent with Steve had me surrounded by younger, healthy and fit people (even Steve was seven years younger than me) which I always thought was so critical to leading a vibrant life.  It is funny, when I first started my Information Technology career in 1973, for most of my working life,  I was always one of the youngest in my office.   It seems as though when I was  in my fifties, that demographic changed and I started to be one of the older people among friends, co-workers and acquaintances.  LOL, I have come full circle and now I am once again, one of the youngest when compared to the residents I have come across in my new community.

Music in public places and the food here are the most obvious generational differences I have seen since arriving at my new home.    This realization brought back a funny memory I had with Steve when we went to visit my Mom in her assisted living facility in the months leading up to her passing in 2000.  The residents, along with my Mom and Steve and I were all together listening to a piano player who would come in periodically to play the songs from my Mom’s generation; e.g.; Frank Sinatra, Dean Martin, etc.  I looked over at Steve and said to him, when we get to the point my Mom was in her life, we will be listening to cover bands playing Led Zeppelin and the Rolling Stones.  We both had a good chuckle over that one.

But, I don’t think my current neighbors will appreciate my wanting to blast Aerosmith or U2 in the public areas.

The other generational difference I notice is the food that is served.  When I asked for whole wheat buns or whole wheat pasta, I felt I like I was perceived as having two heads.  Most do not understand the concept of vegan or vegetarian.  Many people think they are synonymous and some define vegetarian as not eating red meat.

Nonetheless, my decisions to move are sound and I still think I made the right choice.  Although I struggle daily with accepting the inevitable (aging and infirmity), I do see a silver lining with the move to my new home.  With age comes wisdom and it  is what I have seen in many of the residents here.  Living in the moment and expressing gratitude guides many of them.  My hope is that their influence will inspire me to be more mindful,  patient and to learn from their dignity.  Acceptance of my situation and not inwardly battling what does and will come to pass will surely pave a peaceful road for me.

Please check out my website to find out more about Steve and his memoir; Slipped Away as well as the video I made to complement Slipped Away.

 

 

 

 

 

 

 

 

 

Sycophants…

2007 IMLP bike usat award

Seal was a favorite recording artist for Steve and I.  It is through the lyrics of Seal’s song “Don’t Cry”, we discovered the word sycophant.  Dictionary.com defines sycophant as “a self- seeking,  servile flatterer;  a fawning parasite”.  In my experience, this  is a definition that is very fitting and aptly describes some of the people who were in Steve’s life.

Since Steve accomplished so much in the sport of triathlon and was so well known in the triathlon community, it was only natural for sycophants  to be attracted to Steve.  What really disappoints me is how some of these same people still continue to behave in a sycophantic manner  two years after Steve’s suicide.

Just this month, Steve was selected by triathlon’s governing body, USAT, as their 2016 Lifetime Achievement award winner.  I shared this on Slipped Away’s Facebook page, a page I created  to honor Steve’s legacy and to also raise awareness for mental health issues and suicide.  Slipped Away, Steve’s memoir that I wrote, is promoted on this Facebook page and every dollar that has been made from the sale of this book is donated to project9line.org, a non- profit organization devoted to providing outlets in the arts for veterans suffering from PTSD and depression.

Within hours of my posting this great news of Steve’s award on social media, there were those who took the information (including the photo of Steve that I used) and did their own postings of this news without any evidence that it came from Slipped Away’s Facebook page.  Why would they do that and not acknowledge the source?  Was it  a “hanger-on”  effort to boost their own self-esteem in the eyes of others in an attempt to fuel the misconception that they were important and loving people in Steve’s life?  Or, are they too embarrassed by acknowledging the cause of Steve’s death and in effect, propagating the stigma?  No matter what the reason(s), I find their behavior to be despicable, especially since I know Steve would have been disgusted with their actions as well.

On a positive note, there would have been a time when  I would have been devastated by this type of behavior (this is not the first time I have witnessed this type of conduct), however, now, I am able to realize the transparencies of the motives of these people’s actions.

As these people continue their sycophantic behaviors, some day,  if they have not already, others will see through it as well.

 

 

He loved me, he loved me not…

blog-he-lovese-me

 

It has been over two years since Steve took his own life.  Some days are better than others, however, for the past month, I have been sliding into a pit of despair.  Just as it was with Steve, it is the same for me; things are not always as they seem.  Friends tell me I look good and they are proud of my ‘strength’, but, in reality, I am barely keeping my head above water some days.  This is in spite of doing all the ‘right things’;  yoga, exercise, meditation, being grateful for what I have, trying to live in the moment, etc.

As I reflect on the past month, I believe I know why I have regressed.    I had finished a video to promote Steve’s story (Slipped Away) and to raise awareness for mental health issues and suicide.  I also created a second edition of Slipped Away to correct some cosmetic mistakes and typos which required me to proof the book by reading it line by line many times.  Both the video creation and book proofing caused me to re-live what I went through in the days leading up to Steve’s suicide.  But, I think what finally pushed me over the edge was  searching Steve’s computer and reading documents  Steve had written in the tumultuous  two years prior to his death.

In his writings, Steve was filled with self hate and loathing, questioning everything in his life, decisions he made or didn’t make.  This included his doubts about our relationship.  In more than one document, he indicated that he felt that I loved him more than he loved me and he was indecisive about leaving me.   This just tore my heart apart.  I became so angry with Steve and I wanted to tear up all my photos of him and of the two of us.  However, I thought that might be something I might regret, so I decided to pack all of our pictures  away in a box.  I even had to change my computer wallpaper which was a photo of the of us from a happier time, as I could not stand the sight of the two of us, seemingly so much in love.

I was so down and depressed, I decided I needed to speak to a mental health professional who knew Steve to help me try to make some sense of Steve’s actions and words.   The doctor explained to me that more than likely,  it was the nature of Steve’s mental  illness that was consuming his mind and filling his head with the obsessive, self deprecating thoughts that he was having.  Steve could no longer think logically or rationally.

In the end of 2012, someone (In my opinion, this person was a narcissistic sociopath with ulterior motives) wrote a lengthy letter to Steve, basically attacking his character and ethics. The letter was filled with hateful lies and false accusations. Sadly, in his fragile state, Steve could not see through the intentions of this individual and took everything that was said to heart and he would repeatedly beat himself up believing that all the mean and cruel statements  were true.  While this letter in and of itself  was not the cause of Steve’ s suicide, I do believe it rapidly accelerated Steve’ s slipping away from us.  Then, of course, others sensed Steve’s weakness and the vultures began to circle.  There was a lot of cannibalistic behavior exhibited  by others during Steve’s final two years of life.  As Steve’s head coach said in Chapter 2 of Slipped Away, this behavior did truly happen and in other cases, the behavior was perceived by Steve as such.  It is no wonder Steve could no longer think clearly.

Since it serves no purpose other than to make for some gossipy reading, I choose to remain silent for now, about the details of what went on in our lives for the two years leading up to Steve’s suicide and the months after.  As the saying goes, what goes around comes around and I do believe in Karma.

Re-living all this pain and collateral damage brought on  by Steve’s mental illness has once again left me with so many unanswered questions.   Did Steve and I have a great love story or did I make it all up in a fantasy of mine, clouded by grief?  Are Slipped Away, my Facebook page and website tributes to Steve all a  sham?

My conclusion?    As I look back at all the photos and stories from the book and Facebook postings, out of the 33 years we were together, I truly believe for 31 of those years, there was a great love story until the disease eventually took over Steve’s mind and he became so tortured, he could not think straight any longer.  He loved me…

 

 

 

 

 

Six minutes

1985 shell beach smiling faces0001

This past week, I finally finished a video to complement the message of my memoir about Steve Tarpinian, Slipped Away.  This was after many, many hours of choosing photos, designing a layout and writing the script.  Then, it took more than six hours for a videographer to execute my vision..

My biggest concern was that at six minutes, the video was too long.  After all, the average adult attention span is eight seconds (I am guilty of this short attention span myself).  This was after cutting out approximately 60 seconds of photos/voiceover.  I decided I could not cut any more if  I wanted to do justice to Steve’s life and legacy and also allow his story to hopefully help others.   The challenge I had was how do I get such important messages across in less than two or three minutes, that things are not always as they seem for people suffering from depression and mental illness.  Many of those afflicted are very good at hiding their pain, as was the case with Steve.  I also wanted to show how much Steve was loved and the legacy he left behind.  Steve’s story is not unique; for every suicide, there are so many unanswered questions and the pain and suffering of those that are left behind and the sudden loss of a precious life.  The stigma associated with suicide and mental illness is alive and well.  I decided I would not compromise my vision for this project by cutting the video down to two or three minutes duration.

After all, what is six minutes out of our day?  How often do we spend more than that waiting in line at the post office, sitting in traffic or even looking at our social media accounts?  My hope is that in the six minutes of my Slipped Away video, you can walk away with a new found perspective that mental illness and suicide can happen to anyone or that it may help you be more sympathetic to those that suffer, or perhaps it may make you realize that you have a loved one who may be suffering and you never thought that could be possible.  Even if  watching and listening to the messages of the video gives you pause to be grateful for those loved ones who are still with you in your life. that you give them a hug and tell them you love them, then keeping the video at six minutes is well worth it.

My expectations for the video’s impact are probably too high.  I am thankful for those that watched the video, liked it and even commented on it.  However, very few are sharing  it.  Is this because they already spent six minutes watching it and forgot to share it, having to move on to their next focus?  Or, could they not share it on social media because they do not feel comfortable acknowledging suicide and mental illness?

The path I have chosen, to inspire conversation about mental health issues, is daunting and exhausting at times.  By chance, this morning on the news, there was a segment on JK Rowling.  She was turned down several times by publishers before Harry Potter  became one of the greatest phenomena in children’s literature, with sales of more than 400 million  copies worldwide.  At the end of the segment, the message which I so desperately needed to hear was to finish what I started and there is much to be learned in the process and that rejection does not imply failure.

I truly believe there is no such thing as overnight success.  I have only been at this for two years; who knows, it may be another ten years of perseverance and being “gum in the hair” before I have any real success.  I define my success as having the ability to  donate sizable dollar amounts from the proceeds  of Slipped Away’s sales to a nonprofit veterans organization (project9line.org) that provides outlets for veterans suffering from PTSD and depression.   That, along with the telling of Steve’s story such that it can help thousands of others and to inspire conversation about mental illness and suicide on a large scale will constitute a huge triumph for me.

Until that  time comes, I will continue to tell Steve’s story, even if it takes me more than six minutes.

 

 

Tears for Brian

 

Today, I wept for Brian.

He took his own life in March, 2015, the same month of the same year Steve left us.  I never met Brian, nor do I know his family.  However, I have connected with his Mom Norma through social media as a fellow suicide survivor.  Although Steve and Brian were from different parts of the country (Brian from rural Pacific Northwest, Steve from urban Long Island, NY) and Steve was about twice the age of Brian,  I believe they were kindred spirits and had they known each other, they would have fast become good friends.

Last night, I was having a Facebook chat with Norma.  She shared some stories and photos of Brian with me that truly touched my soul.  Norma could have been talking about Steve.

One time, Brian had rescued an owl with a broken wing that some juveniles had thrown into a lake and they were trying to drown it. He jumped in to rescue the owl and took care of it that night until he could get it to a veterinarian to check it out.  Then after the vet treated the broken wing, Brian took the owl to a nature preserve for rehabilitation.  This reminded me of the time when Steve and I found a featherless baby bird near death on the ground.  Steve gently placed the bird in a small box with some hay and climbed a telephone pole to put the box closer to the nest built in a transformer where it probably had fallen from.

Norma shared another sweet story about Brian with me.  One time while driving, he could not avoid hitting a rabbit that darted in front of his car. Brian stopped the car and picked up the barely alive rabbit  and held and comforted the poor bunny until it finally died.  Then he made a little grave for it  alongside the road and buried it there with a small cross he created.

Brian had several rescued pet rabbits, as did Steve and I.  Per his Mom, Brian hated all the horrible things that happen to animals and people. He couldn’t understand how some people could be so cruel.  Steve was much like that himself.  Brian and Steve, two gentle souls, apparently, both were too gentle for this earth.

This planet was a far better place with Brian and Steve in it.  To me, they were the epitome of strong men; not afraid to show their kindness, compassion or sensitivity.  As it has been said, you can always judge the character of a man by how he treats the weaker among us. The actions of Brian and Steve speak volumes about the type of men they were.

The photos in this blog are worth a thousand words.  Brian and Steve are holding the rabbits with such tenderness.  If prey animals like rabbits can be so at ease in a human’s arms, it says a lot about the trust worthiness of those people.    As a volunteer for a rabbit rescue organization, I know that rabbits do not give their trust lightly.

Brian and Steve represent the countless others among us who suffer silently.    Their lives had so much value and in their own ways, they each made positive impacts on the lives of others.   I tell their stories to inspire conversation about mental health with the hopes that there will be new, effective  treatments developed and so that others may someday come forward without shame and seek help.

This world so desperately needs people like Brian and Steve more than ever.  Their passing was such a great loss not just for their loved ones, but for humanity itself.  Even though they are no longer with us, I believe the legacies of Brian and Steve will endure and in some way, help others; something it seems they both did so well in life.

 

Are my hips getting tight?

yoga-balance1On March 15, 2017, it will be two years since Steve took his own life.  I went back to read the blog I had written a year ago on the first anniversary of Steve’s death.   Much of that blog talked about my grieving and my observations of how people re-act to those that grieve.  Some things have not changed in the past two years.   I still cry a lot over the loss of Steve and I miss him terribly.  On  the plus side, I have found out who my true friends are and I am learning not to lament the loss of individuals in my life who I thought were people that once cared about me.

I did have an interesting “aha moment”  this week.  It was precipitated by two experiences.  The first was a blog  I read called “Widowhood: The Glass House Of Grief”.  It was written by Michelle Steinke (One Fit Widow).  Michelle lost her husband several years ago in a tragic accident.  Here are some very interesting  excerpts from her blog:

“Regardless of your kind of loss people are going to tell you that you are doing it wrong, you should be doing it differently, and they know the way”

“You should not be judged as to how you process your pain – but you will be.”

This brings me to the second part of my “aha moment” experience.  It came in the form of a communication from someone that was connected to Steve and myself.  This is someone I no longer have a relationship with.   To give you some background, I did not attend Steve’s funeral.  It would not surprise me if some that read this may be judging me right now.  How could I NOT attend the funeral of the love of my life for over 33 years?  I have my reasons which I will not go into and given the circumstances, in retrospect, I wouldn’t have done anything differently.  Regardless, it does not matter what my reasons were, it was part of my grief journey and I did what I had to do to survive one of the most painful and life altering experiences of my life.   Also, how I acted while grieving does not justify some of the cruel actions that a few have taken after Steve died, some which have occurred  as recently as February of this year.

In the communication I received this week, I was told that all of Steve’ relatives and friends supported the family and I chose not to be at the services during that painful time.  That brought me back to what  Michelle Steinke’s said about being judged.  It is starting to become clearer to me now as to why many may have reacted the way they did to me.  Previously, I chalked up the unkind words or actions and avoidance of me to my being public about the cause of Steve’s suicide or perhaps I was blamed for his death or even because people just did not know what to say.  Now, I am thinking I may have been  unfairly judged.

Steve and I were cognizant of the fact that it is human nature to be judgmental at times and we tried to help each other to refrain from doing so. We never forgot about a yoga class we took in California where the instructor said judging people makes our hips tight.  From that point on, when either one of us would start to judge someone, the other would ask “are your hips getting tight?” This would make us smile and we would try to have a little empathy for the person instead of judging them.

We both realized, as hard as it may be not to judge others, no one has the right to do so unless one has walked a mile in someone else’s shoes (which is virtually impossible).  In my situation, no one could possibly know what I experienced in the years leading up to Steve’s death, or the aftermath I struggled through after he died.  No one was ever in the room with us when we talked about our life together or what we wanted done should one of us die before the other one.

Judging a person for how they handle their grief is a place no one should ever go.  At some point in our lives, we will all experience the horrific agony of the loss of a loved one and we do not need the additional pain of being judged by others as to what we should or should not do on our grief journey.

I think now would be a good time for me to go practice some yoga.  Notice I say practice, as it is something that I must do every day to become proficient at keeping my hips loose.

www.SlippedAway.org