Fallen

fallen-blog

How many times have you had a chuckle over the bad acting in the “Help!  I’ve fallen down and I can’t get up” commercial?  I know I have had a few laughs many times while watching it.  Perhaps it was a protective reaction since none of us like to face what might be a real possibility if we live long enough.

Monday morning at 3:00a.m., that commercial was echoing in my head as I lay on the cold, hard tile floor of the bathroom and it became reality for me.  Never in my life had I felt so lonely, so full of hopelessness and despair.  I had gotten out of bed to use the bathroom and next thing I know, I lost my balance and my head hit the tile floor with a resounding thud. As I lay there, I broke out into a cold sweat, was nauseous and knew I was bleeding from the head but I couldn’t move.  Finally, after a while, I dragged  myself to get back into bed, trying to decide if I should call 911.

Since the bleeding stopped, my vision was okay and I was no longer dizzy, I chose not to call for help.  The next day, my cousin, one of the most knowledgeable  nurses I have ever known, came over and checked me out .   I have said before, I will always be lonely, but I will never be alone since I have such caring and loving people in my life.

I believe I am okay, however, I also believe this is a wake-up call for me regarding my health.  The time has come for me to accept that I cannot fight Parkinson’s any longer on my own without medications.  My hope is that the medications will alleviate some of my symptoms such as lack of motivation and depression so that I can focus more on exercise which I firmly believe is the best way to fight the progression and symptoms of this disease.

Trapped.

trapped

Themighty.com issued a writing challenge; create a metaphor to describe your condition or a symptom of it, so someone completely unfamiliar with it can get a glimpse into your world.

In 2015,I was diagnosed with  Parkinson’s Disease (PD), six months after the suicide of my soul mate of over 33 years.  Here is a small window to my world for those of you who know nothing about PD…

Fluidity, grace and balance, skills I developed as a result of training for years as a dancer and an athlete, are now replaced with rigidity, stiffness  and clumsiness.  My ability to write legibly, something I got my knuckles cracked for in parochial school if I did not do it properly, is gone.  I wonder why my computer is doing strange things until I look down at my hands on the keyboard and see a finger is consistently pressing a key and I had no clue.  I feel such a loss of control over what my body does now; it has a mind of its own that I have no jurisdiction over.  I am trapped in a body that is no longer the one I had lived in for over 63 years.

Bradykinesia, a defining feature of PD,  means “slow movement.”  Almost as if I am on the outside looking in, sometimes I feel as if I am  staring at myself in disbelief, trying my hardest to will my body to move faster, only to be ignored.  Sadly, instead, I see a windup toy that has slowly unwound to almost a complete halt.

My fine motor dexterity is impaired and seems to worsen on a weekly basis.  At times, it feels as though I have reverted to being like a child since I have to re-learn how to do the simplest of life’s undertakings, like putting money in a wallet or tying my shoe.  Putting papers into a knapsack can overwhelm me.

Depression and lack of motivation abound with PD.  I cry on a daily basis.  The sobbing can start just by watching a happy couple on a game show or hearing a sad song on the radio. For someone who would train at the level of a professional dancer or who had the drive to train with a heart rate monitor while pursuing endurance sports, I can barely cycle 6 miles on a bike at 10 MPH, turning my legs at no more than 65 RPMs.  I have lost strength, not just while lifting heavy things, but also for performing simple  everyday living tasks, like pushing a door open.  I struggle with maintaining confidence in myself as  I always feel weak and shaky.  Exhaustion is my daily natural state of being, even if I had a good night’s sleep.  My ability to remain vertical used to fade out at around 4pm, so much so, that I would have this urgent need to get horizontal.     Now, I fade out around noon and have to get to bed ASAP.

One may look at me and think I am in good  health.  however, things are not always as they seem.  I have tried to wear the brave face and be optimistic and positive, but, I am starting to strain to maintain this false sense of well being.  I am trapped in my own body.   Yes, I am learning to adapt and try to do things differently to overcome my new challenges, however, there may come a time when that is no longer possible on my own and this weighs heavy on my heart.   I try to live in the moment and not worry about the future, however, I am only human and sometimes I dwell on my not too distant future.

 

On a daily basis, I experience such a high level of frustration  and I am constantly mourning new losses of things I took for granted in the past.  As an example; last week,  I could not slip my left  foot into a shoe. At the early onset of my PD symptoms,  I was unable to keep a clog on my left foot while walking, now, my left foot just doesn’t move properly anymore.  Things like washing my hair with both hands or petting my rabbit with my left hand are no longer possible.

Six neurologists have diagnosed me with PD, so , I am coming to terms with accepting that I have this disease.  More than one doctor has told me people do not die OF Parkinson’s, rather, people  die WITH  Parkinson’s.  I am not convinced this is good news.  PD is incurable and it progresses in varying rates in different individuals.  I used to wake up every morning hoping my PD was misdiagnosed and that it was just a bad nightmare.  Now when I wake up, I hope I can still do the things today that I used to do yesterday.

So what is my plan?  I will continue to exercise, stretch, go for physical therapy and with what little motivation and energy I have , I will continue to search for relief from this disease.  Being on a plant based diet and natural dopamine supplements for over six months has not worked  for me.  This week, I will try acupuncture and Chinese herbal medicine.

As I understand it, PD medications only mask the disease symptoms and do NOT halt the disease progression,  Now, even though I was so against taking the PD meds in the past due to my initial bad reactions and side effects, I am now going  to also consider re-taking PD medications and/or antidepressants.  Even though the meds may eventually  lose their efficacy, I have to try to improve my quality of life.

 

http://www.SlippedAway.org

 

 

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.

 

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.