Acceptance, Gratitude and Attitude

serenity-prayer2When I started counting my blessings, my whole life turned around.” —Willie Nelson

My good friend Mike ‘s prayer card had a quote that has truly resonated with me. I believe it marks the beginning of an important turning point in my life.

Since I was diagnosed with Parkinson’s Disease(PD) seven months after the suicide of my soulmate Steve, in 2015, I have been in denial and refusing to accept that I have this disease.  Part of that denial was refusing to take any prescription medications.   These medications can only potentially relieve or mask the PD symptoms.  The drugs can be very expensive and do not help everyone and as it is with most medications, they can have very bad side effects.  Over time, as the disease progresses, the drugs start losing their efficacy and dosages need to be increased at the risk of incurring more and/or stronger side effects.   PD is incurable and no medication is known to stop the progression of the disease. My holistic alternatives to achieve some symptom relief and possibly slow the disease progression consist of weight workouts, boxing, walking, eliminating sugar, gluten, dairy and meat in my diet, practicing yoga and meditation; all done in an effort to combat whatever neurological issues I was having.

Since many (doctors and other people with PD) have indicated to me that the drugs can be life changing and can greatly improve the quality of life, I finally succumbed and started taking PD medications a few months ago.  The ideal is to find the right ‘cocktail’ of drugs at a dosage where the symptoms are relieved with no or minimal side effects; a time consuming and frustrating process with no guarantees of success. The hope is that there will soon be a cure, therefore eliminating the need to continue to take these medications.   While I am skeptical that there will be a cure for PD in my lifetime, all I have is today and I want to live a quality life in the present moment.

I do believe I am now starting to see some improvement in my symptoms; my mood is more uplifted, I don’t experience ‘internal tremors’ (weakness and shakiness) all the time and my fatigue is not as bad.  I still suffer from bradykinesia (slowness of movement) and my fine motor skills (writing, typing, etc.) have not improved.  The progress I have made thus far could be from my boxing classes, my diet, the medications or a combination of all of these.  Or perhaps maybe it is because I have finally accepted that I will never be the same again, that I will never be the dancer or athlete I once was.  I am no longer in denial.  Whatever is affecting me neurologically is now my new reality.  I accept this.

Attitude adjustment and expressions of gratitude are also part of my healing process.  In the not too distant past, whenever I would see someone in the more advanced stages of PD, I would think to myself; “That is my future.”  Now, I am starting to reframe my thoughts.  If I see someone whose PD symptoms are worse than mine, I will remind myself to be thankful for what I have.  I can still live independently, I can still drive and I still have my cognitive skills (although sometimes I wonder about that LOL).  Since I am retired, my time is now used to doing activities that will help heal me.

I accept and understand that some of my symptoms may never be banished.  My hope is that the medications will allow me to continue to do my exercise program at a higher intensity and that in the long run, I will be able to achieve even more symptom relief and/or halt or slow the disease progression and possibly wean myself off the medications.  It will not happen overnight and it will be a long, slow process with many bumps in the road.    I understand and accept that I will have ‘off’ days, but, I do believe there will also be ‘on’ days too.

Just as I have finally accepted that Steve took his own life, I now acknowledge that I have PD.

Accepting the reality of my disease will not make it go away.  I believe acceptance will free me up to use the energy that I do have to fight the progression and symptoms of PD.

Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.”  — William James

 

 

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Rock Steady — on fire

rock steady4

 

 

“She’s living in a world, and it’s on fire
Feeling the catastrophe, but she knows she can fly away
Oh, she got both feet on the ground
And she’s burning it down
Oh, she got her head in the clouds
And she’s not backing down” — Alicia Keys

 

 

About two weeks ago, Michael, one of the volunteers in my Rock Steady boxing class told me I was “on fire” in class.  I knew exactly what he was talking about because there were moments (more than a few) where I felt strong and powerful while performing some of the drills. My energy level felt good and although I was still feeling tired, somehow, I was able to dig deep and really hammer parts of my workout.

Before I wrote about this experience, I felt the need to be sure it wasn’t just a one-shot deal and I wanted to get in a few more classes to make sure this was not an anomaly.  With Parkinson’s Disease (PD), there are good days (don’t have too many of those) and bad days and I wanted to see if I could produce the flames again in spite of my PD.  I am happy to say, for the next few classes, I re-discovered the ability to train hard, even if only for 5 or 10 minutes at a time.

As an unexpected bonus, in my last class, I found some of my lost rhythm as Coach Michelle had us dancing up to the heavy bag for our punching drills.  The energy levels were off the charts and my fellow boxers and I were having a blast, dancing with abandon!

That day, I had dedicated my class to my good friend Mike, who took his own life a few days prior. Mike was such a great supportive friend, especially during my times of great need after Steve died by suicide in 2015.   During the class, while the theme song from Rocky was playing and we were doing heavy bag drills, I had an emotional meltdown. I thought for sure, I would have a huge setback and my PD symptoms would rear their ugly heads with a vengeance.  Stress and emotional trauma can wreak havoc on those with PD.  However, my fellow boxers, Coach Michelle and the volunteers showed me such great kindness and support, I was able to persevere and finish the class.  Through their compassion, drawing on my newly found physical strength and thinking about the great courage Mike had fighting his battles and the great strength and bravery of his family kept my fire going.

After over four months of Rock Steady boxing classes, two times per week, I am starting to see a consistent difference in my physical abilities and my confidence is growing. I hold no illusions that I am “cured” and I understand that there will still be some bad days, but, I truly believe Rock Steady boxing will make a positive difference in my quality of life.

This girl is “on fire”.

 

Just when I thought my heart couldn’t break anymore.

 

“When a close friend unexpectedly leaves us, a piece of our heart is forever broken.” –Chis Lumpkin

It has been almost three years since I lost my life partner Steve to suicide. On February 2, 2018, my heart was broken once again when a very good friend of mine, Mike, took his own life.

Mike and I graduated Seaford High School in 1971 but lost touch over the years only to reconnect our friendship through Steve at a triathlon in the 1990s. Mike, like Steve, loved the challenge of this multi discipline sport and was one of the earlier triathlon participants on Long Island.  Mike’s son, Michael Jr., was also an early participant in the sport, however, it was from his stroller, as he watched his Dad from the sidelines with his Mom, Ramona, while Mike competed.  For many years, both Mike and Michael Jr. were members of Team Total Training; Steve’s triathlon team.  Steve also coached Michael Jr. in both sport and life.

Mike was a great family man and it was so very apparent to me how much he loved his wife and two sons (Michael Jr. and Matthew).   He shared with me on more than one occasion, all the wonderful times he had with his family when they would go out to Southold, Long Island when Mike participated in the Mighty North Fork Triathlon.  As Michael Jr. got older, he joined his father and they would both do the race together while Ramona and Matthew cheered them on.   Mike told me how much he and his family loved staying at the Drossos Motel near the race site, a place I drive by 3-4 times per week now since I am living on the North Fork.  Every time I see that motel now, it will bring me back to simpler and happier times for both myself and Mike’s family.

Mike was one of my closest, supportive friends after Steve passed. He and his family lived around the block from me (less than a mile from our high school) and he was always there for me, whether it was shoveling snow from my driveway, doing some heavy lifting for me or helping me move to my new home on the North Fork. Mike helped me realize I was not alone and I will be forever thankful to him for all he had done for me in my time of need.  Mike was the type of friend that would drop everything he was doing if one said they needed his help and I consider myself blessed to have been his friend.

Even though he no longer participated in triathlons, Mike was there for me as I walked across the finish line in memory of Steve at the Steve Tarpinian Memorial Mighty Hamptons triathlon in 2015.  In October of 2017, Mike, Michael Jr. and Matthew participated in the MightyMan Montauk Triathlon and they all sported some of the original Team Total Training gear in memory of Steve.

Mike also took me to the Aquatic Center every December after Steve passed and he would complete Steve’s birthday tradition of swimming laps with Steve’s former triathlon team.  Sadly, the last time I saw Mike was at Steve’s birthday laps celebration in December 2017.

All these random acts of kindness Mike did for me will always be remembered and cherished.  To me, they personify Mike’s goodness and his kind and thoughtful nature.

Too many are being lost to suicide; it is so much more prevalent than people realize. Because of its stigma, no one wants to talk about it. Ignorance about suicide and mental health issues abound.  Comments like “suicide is a permanent solution to a temporary problem” and “suicide is a selfish act” have no place in our society and only further contribute to the stigma.   Anyone who says comments like these has no idea of the mental anguish one who takes their own life may be suffering; that it is so painful, they fear living more than they fear dying.

The Stewart family is so brave for being open about the cause of Mike’s death and they have inspired me to continue my journey of inspiring conversation about suicide and mental health issues. It took me months to overcome perpetuating the suicide stigma with my silence over the cause of Steve’s passing.  I am sure this was not an easy decision for the Stewarts.

My heart aches so much for Mike’s family. No one should have to suffer the pain and mental anguish that our loved ones went through nor should the suicide loss survivors have to suffer such devastation. These are shoes I would never wish anyone to walk even five feet in, let alone a mile.

I have no answers or solutions, but I do believe the more freely we talk about these topics, perhaps someday, it will help remove the stigma and shame associated with them.

 

“If we share our story with someone who responds with empathy and understanding, shame can’t survive”.  – Brene Brown

Rock Steady – Dream On

 

dream-on-blog

I really like it when a bad dream doesn’t scare you…it inspires you instead.” — Fwah Storm

It has been almost three years since my soulmate Steve was lost to suicide in 2015.  After his passing, I blogged about what I thought were “signs” from him.  Since then, I haven’t been aware of any other “signs” until this week.

“In one sense there is no death. The life of a soul on earth lasts beyond departure. You will always feel that life touching yours, that voice speaking to you.” — Author Unknown

On Friday, I broke wood in my Rock Steady Boxing class.  It wasn’t so much a show of strength, but a boost of confidence building and overcoming fear.

Steve was in the room with me that day.

Earlier in the class that day, a song came on that brought back a fun memory of Steve.  We would always ask each other to name the artist when a song came on the radio.  When Steve didn’t know the answer, he would always say The Grass Roots, especially every time the song “All Right Now” (actually performed by Free) played.   In class, this song came on and without thinking, I asked Michael (one of the volunteers) if it was The Grass Roots singing.

A little later, Michael made a comment about ‘wax on, wax off’ whenever Sensei Michelle gave an instruction.  Another “Steveism”; this is something Steve would always say to his coached athletes whenever they might question his reason for a drill.

Even more profound of a sign from Steve to me was the dream (nightmare) I had that night.  At one point in my life, when I travelled a lot in my career, I had a fairly consistent dream.   In the nightmare, I would be laying in bed and I could feel a malevolent, foreboding presence hovering over me.  That in itself was frightening enough, however, the worst part of the dream was that I couldn’t scream.  I would open my mouth and nothing would come out.   Although these types of dreams are fairly common and may be referred to as sleep paralysis, I called it my ‘hotel man’ dream. After I stopped business travel, this dream would come back to me periodically and Steve would wake up hearing my pathetic attempts at screaming and would rouse me because he saw how distraught I was.   My voice always failed me every time I had this dream.  Since Steve has passed I have not had a re-occurrence of this dream until this week.

What was different about the dream this time was that I was actually able to scream at the top of my lungs and my screams woke me up.  My bunnies in the other room, sensing my distress, were thumping up a storm.   Was the ‘hotel man’ back to haunt me again?  Was the dream a side effect of my medication?  Why can I scream now?

“A dream which is not interpreted is like a letter which is not read.” — The Talmud

I choose to believe the ‘hotel man’ dream I had that night was a sign from Steve that I am building my own voice again to overcome my fears and to help me continue to move through life without him.

I think breaking wood that day in Rock Steady was the catalyst and a big first step in helping me to find and rely on my own inner strength.

Rock Steady – Fear of Failure

rock steady breaking woodrappel1984 st+jm scuba divers bonaire

 

 “The greatest obstacle to success is the fear of failure.”

― Debasish Mridha

Two weeks ago, Sensei Michelle offered Rock Steady participants the opportunity to “break wood” with our hand.  Stan and Kelly volunteered and both were successful in crushing the wood.  I wanted to try, but something was holding me back.

I thought long and hard as to what was stopping me and I believe it was because I was afraid of failing.  Why should I feel that way, since I was surrounded by kind, compassionate people who wouldn’t feel any different about me if I couldn’t break the wood?  I reached out to Sensei Michelle asking her if she thought I could do it.  Her response; “How could you be fearful of something you have not tried yet? If you tried it and broke your hand then you will be fearful”.  I then asked her if I could attempt to break the wood at the next class.

Sensei Michelle brought out the wood for me in class later that week and I succeeded in breaking it on the first try.  You would think I crushed a 200-lb. boulder in half, I was so excited!

Most of my adult life I have had fear of failure, but I pushed myself to do things out of my comfort zone, like rappelling, cycling in the mountains of Spain, scuba diving and roller skating.  In the past, Steve (my soulmate lost to suicide in 2015) was always there to encourage and support me and I pushed through my fear of failure knowing he was always there for me.  Now that Steve is no longer here, I must rely on myself and learn to lean on others for support when I need it.

What has “breaking wood” in Rock Steady class done for me?   It is helping to re-build my self-confidence (something I lost when Steve passed away and was further eroded by my Parkinson’s diagnosis).  My fellow boxers, the volunteers and Sensei Michelle are all there for me now and I am learning to rely on my own inner strength to help me overcome my fear of failure.

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear” — Nelson Mandela

 

 

Better than yesterday…

2011 jm chs finish

“Better than yesterday, but not as good as tomorrow”

I try to respond with this statement when someone asks me how I’m I am doing.  Some days it is easier than others to respond with that. Lately, I am finding it much more difficult to say. For me, there is no respite from Parkinson’s Disease (PD) symptoms in my waking hours. They manifest themselves in everything I do from the moment I open my eyes in the morning until I go to sleep at night.  Getting into or out of the bed is a struggle and dressing myself is a huge challenge.  Making my breakfast, I knock things over on the counter with my clumsiness.  It takes immense focus on my part to put on a sock or a glove.  I am reminded of the loss of my strength every time I open a jar or rip open a package.  Whenever I put money in my wallet, I can see how much my fine motor skills have deteriorated.    First it was my left side that was failing me, now my right side is worsening as well.  Writing a check, typing on the computer, opening the mail, petting my bunny’s head, washing my hair and folding clothes or sheets, all mundane tasks I have always taken for granted are now monumental efforts for me.  I keep telling myself, if my symptoms don’t get any worse than this, I can deal with it and make adjustments, but the disease seems to progress a little more each day. It is like death by a thousand paper cuts.

Since I don’t have visible tremors, most people think I am fine.  No one can see my ever present  “internal tremors” which make me feel so weak and shaky on the inside.  As I reflect on what Steve went through with mental illness and my PD diagnosis, I see so many similarities in the treatment of the two diseases. The irony does not escape me.   It has given me an entirely new perspective on the hopelessness and despair Steve must have experienced.

Many medications exist to treat the symptoms of mental illness and PD (I am not aware of any drugs that can stop the progression of either disease).  It could take weeks, if not months, to know if a medication has any positive effect in alleviating symptoms. In many cases, prescription side effects seem to be the same as what the drug is supposed to help.  New drugs that are being approved for the respective diseases seem to be additions to existing medications to either combat side effects of another prescribed drug or for improving the efficacy of the first drug.  To further add to the frustration, one may have to be weaned off a medication if it is not working.  In addition, over time, efficacy of a successful drug may start to fade.

Witnessing the deterioration of our capabilities, in my case physically, in Steve’s case mentally, is frightening beyond belief. About a week to ten days before he passed, Steve said to me, “I am so afraid.” When I asked what he meant, he could not—or did not want to—explain what he feared.   Most people have no clue as to what we are/were dealing with and how exhausting it is to put on the mask that everything is okay when it is not.  As it was with Steve, so it is with me…things not always as they seem.

In Steve’s case, I believe his mind was in constant turmoil which was always a reminder to him of his mental struggles and I suspect since his illness appeared to be progressive and seemingly incurable, it compounded his anguish.  In my case, my mind is trapped in a failing body that no longer listens to me which is a constant reminder of the incurability and progressiveness of PD.

Steve and I left/leave no stone un-turned (traditional Western medicine or alternative, holistic therapies) in our quest for relief from our respective afflictions.  For me, nothing seems to help (yoga, boxing, weight lifting, walking, supplements, diet, prescription meds, acupuncture, meditation and physical therapy).  For Steve, it was swimming, biking, running, hiking, supplements, diet, prescription meds, yoga, weight lifting and psychotherapy), all to no avail.

Every day, no matter how much I write in my gratitude journal and offer thanks for all I do have, when I wake up to my reality, the despair will still set in.  But, much like Steve had done, I will put on my happy face and hope that today will truly be better than yesterday, but not as good as tomorrow.

Rock Steady – Shoveling snow

 

shovelling-snow

What does not kill you makes you stronger.”

– Friedrich Nietzsche

One of our drills in Rock Steady Boxing this week was ‘shoveling snow’.  Using a spoon with our non dominant hand, we were challenged to fill a bowl with as many cotton balls as we could in thirty seconds.  That is my left hand which is pretty much useless now for doing anything at this point.  Needless to say, it was a HUGE struggle for me to even get nine cotton balls in the bowl.  My eyes started to well up with tears as I was doing the exercise.  I was feeling so weak and helpless, trying to unsuccessfully will my body to quickly perform such a simple task.  The thirty seconds seemed like an eternity, but I was finally able to finish without a total meltdown mainly due to the support and kind encouragement from the other participants.  Seeing the beaming smiles on some of my fellow boxers who filled the bowl quickly bolstered my spirits. It is ironic how failing at one small mindless task can bring a person to tears, yet, if performed well it can be so satisfying and such a joy.  

While it may seem inconsequential, this is just one small example of the simple movements I  have always taken for granted that Parkinson’s Disease (PD) has robbed from me. I suspect that most of my fellow boxers in class that day truly empathized with me.  Although their PD challenges may be different and unique to them, I believe they too have their moments of helplessness and despair when they are reminded of what they have lost to this disease.  PD affects everyone so differently and while one class member may perform a drill well, another may struggle tremendously with it.  There seems to be no rhyme or reason as to what any one person loses as a result of this disease.

When my PD symptoms start acting up (something that happens more often than not these days) well-intentioned people will tell me I look fine and I know I am NOT fine.  Or perhaps when I share my frustration with a PD symptom like clumsiness or inability to type or write, in an effort to try to make me feel better, people may say things like “it always happens to me” or “I have the same problem”.  They have no idea of the internal struggles that I am dealing with, something I can hide very well.  Just as it was with Steve and his ability to hide his mental anguish and so it is with me being able to hide my PD related physical shortcomings.   Things are not always as they seem.   

It is helpful for me when someone acknowledges my expressed challenges are PD related  rather than dismissing them as  common afflictions due to aging or that my symptoms aren’t visible.  If I say I am so slow or I can’t  tie my shoes you may  think otherwise, however, there is probably a huge battle going on in my brain. I am trapped in a body that doesn’t listen to me anymore.

Some may think that I am doing well because I am still writing blogs and updating my Facebook page.  What they don’t know is that just typing this blog is a gargantuan effort and it takes me hours to finish. Most of that time is spent dealing with my poor typing skills, even with using spell check. I do my best to be thankful for what I can still do and not dwell on what I have lost, however with how my PD is progressing, losses seem to occur on a daily basis now.     

We may encounter many defeats, but we must not be defeated” – Maya Angelou