MPNforum Magazine

The lesson of polycythemia vera:  Love is all

by Jeremy Smith

There was a time in my life when I was lost. I did not actually know I was, but when I was by myself I knew something was missing. I had everything a person could want. I had the successful career and family and on paper I was living the American Dream. Yet I could not figure out who I was and what I really wanted from my life.

In spite of never attending college I managed to rise through the ranks of the company I was at and became President of a division. But then came polycythemia vera and my world was turned upside down. I had no idea PV would grant me a second chance to start my life over. In a few years and some serious dark and challenging moments I would learn how empty my soul had become.

It took three years for things to settle in after the initial shock of the diagnosis. I began to peel back the layers of who I was and I slowly began the process of self discovery. It is not easy of course. It’s time consuming and very challenging work, but worth it. I was amazed at how everything in my life came in to focus once I found my direction. Life is so much less complicated today and I do not worry about so many things. I now finally understand what’s important in my life. I have become more giving to others and less selfish. But I was so far out there it took something like an incurable disease to crack the walls inside my mind.

For me it has come down to four simple themes.

1. Love, and in my case, marriage
2. Family
3. Living life to its fullest
4. Cycling and diet

All of them are interconnected. They are my principles for creating a path to happiness and have driven away the madness of chasing an unrealistic, unfulfilling materialistic life. A life often portrayed in the media to us by our politicians as The American Dream. This dream I was sold when I was a young man- two cars in the garage and lots of accumulated items – has now faded in to my past. I have recreated what the American Dream should be for me. It’s a new life that I would not have found without the influence of my PV. It’s unfortunate PV had to be the catalyst for my change but I do not believe I would have changed otherwise.

King Kong’s Got Nothing on Me

In 1969 Manager Gilbert Hodges guided the New York Metropolitan’s baseball team, AKA the Amazing Mets, to the World Series For a ten-year old my world was rocking! The 1969 New York Mets went 100-62 in the regular season, rallying in August to win 39 of their final 50 games. The Mets went on to win the 1969 World Series, defeating the American League champion Baltimore Orioles in five games. My best friend at the time, Roger Wile, a huge Orioles Fan was devastated. I never saw anyone my age cry like he did after the Mets beat the Orioles. It was for Roger, as they would say on ABC’s Wide World of Sport, “the agony of defeat.”

Six months later a disease hit our town of Weston, Connecticut – well, that is what I called it, but all the adults called it Divorce. First it was our friends the Chernows and then it was the Wiles. Two months later it hit the Smith family and my parents were divorced. I can still remember grabbing my Father’s leg, refusing to let go as he left the door to head from Weston back to Manhattan where he would live again, and we would visit him there. I had now experienced firsthand the agony of defeat and a pain in my heart so hard I thought it would burst. At that moment I promised myself should I ever get married someday and bring children in to this world I would never agree to a divorce.

Fast forward thirty years later to March 1989. After putting our kids to bed my wife called me in to our bedroom. Like my Mother before telling me about our dad leaving us, my wife put her hands on my shoulders and said “I don’t love you, I never loved you. I’m in love with another man. I am divorcing you and moving away. Please get an attorney right away.”

I started eating like a pig and went through a long bout of depression as I tried to pick up the pieces. As we went through the divorce process I thought nothing could get worse in my life. I had no idea what awaited me just around the corner.

It was just after Labor Day and a new school year for my children. I kissed my five-year-old son and two daughters (ages three year old and one and a half) as I headed out the door. As I drove to work I felt another anxiety attack coming on. I had grown used to them between the divorce and being promoted to President at my Company I had a lot of stress in my life. I was no longer exercising and had put on weight so I figured I would just push my way through it all.

As I reached my parking space at my office in the Levi’s Plaza area of downtown San Francisco my anxiety attack worsened. I pulled a U- Turn and headed back home. I never made it home. Prior to pulling on to the freeway I felt even worse and I called 911. When I awoke I was in the emergency room.

For the next six hours I lay on the exam room bed thinking about life as the Doctor in emergency room kept ordering up blood tests. As time passed between waiting for my results I thought about my career, my life.

I had moved quickly up the corporate ladder in spite of being the youngest salesman the Company had ever hired and with no industry experience and just two years of college education.

One year later at just twenty-two years old I had become the number one salesperson. I was making big coin and I felt as large as King Kong. I had no problem letting everyone, including employees and friends, know how good I was.

I was called a young Steve Jobs in the making by the executive management team, with all of the ego, immaturity, anger, thirst for winning and not an ounce of fear or self doubt. Funny thing is I thought the executive management team was giving me a compliment.

Today I understand there is nothing more dangerous at a Company than an unchecked egomaniac, ass-alcoholic with talent, completely unafraid to go nuclear to achieve his goals. And I went nuclear often. The challenge the company had was even though I worked far outside the corporate box I produced results no one could match. So they put up with my outbursts.

I liked hanging out at watering holes where my competitor’s sales reps would get hammered and boast about their conquests. Most of the time it was just the normal macho talk among married guys pounding their chests about a woman they had hidden across town from their boring wives. Tonight was different as I learned our top competitor was struggling and was in need of financial help. They were down to a few small accounts and one very large account.

At a company dinner two weeks later when it was my turn to address the executive team about my next quarters sales goals. I proudly announced I was going after our competitor’s top account and added, “So I can put them out of business.” When I was finished boasting it was quiet in the room and no one would look at me. I returned to my seat and laughed it all off.

The next day our CEO called me in to his office and forbid me to take the competitors top account. I was shocked by his response. I asked him why? “It’s just business” I said. But he said it was wrong and pointed out two hundred employees would lose their jobs at the other company. There is enough business to go around. “I want the commission.” I replied.

When I awoke the next morning my ego got the best of me and I went to work on getting the business. Three weeks later I had the $10 million dollars in new business, the competitor closed their doors after forty-five years of business and laid all 200 employees off. I could not have been happier.

I went on vacation and upon my return I was fired. I was told I had gotten too big for the Company. I was enraged and it made me angrier when I saw the smiles on some of the employee’s faces as I was being escorted to the door. Before they could escort me out the door I shouted back. “I am coming for you next. I will close your doors.” It took me a few years but I eventually took enough business from them they were slowly forced in to bankruptcy.

Then a very different thought came over me. What if there was something seriously wrong with me? Who would actually come help me? Then like a series of movie trailers rushing before my eyes I saw my children. I had taken them and everything around me for granted. Even the simple things, like the sun always being there or the beauty of silence. Life was passing me by without me ever asking myself what makes me happy. For the first time in my so-called adult life I was scared. King Kong was falling from the Empire State Building.

Finally the emergency room Doctor came in and said. “We spoke with your primary care physician and against our advice he said to release you.” It’s not often you hear a message like that.

I now knew something was seriously wrong. I was sick to my stomach. My car had been towed while I had been rushed to the hospital to some unknown destination. As I walked out of the hospital at 3 AM and waited for a cab to arrive I looked up at the moon and mumbled to myself what’s next?

PV: Now what?

The next morning I called my Doctor and he said I needed to ask my employer for a leave of absence and come to the hospital for testing. For six weeks I had a phlebotomy every week until something called my HCT dropped to safe levels. At first I thought he said I needed a lobotomy, and started to freak out. I had no idea what a phlebotomy was so I had to ask. My Doctor said he thought he knew what was wrong but he needed to get me in for a bone marrow biopsy and to see a specialist.

Finally I see the hematologist at my local hospital and he reviews my results with me. “You need to get your life in order“, he says. The room seems to spin and everything is now in slow motion. I feel like I am about to pass out.

“What did you say? I have to get my life in order? I am only thirty-years old – how long do I have?” He said I had ten years more at best and Polycythemia Vera was incurable. I began crying in his office from the weight of his diagnosis he quickly ushered me out telling me. “I have other patients to see and am heading out early for a vacation. You need to leave. I will call you next week when I return.”

That was all I needed to hear to get my mojo back. My nasty personality kicked right back in and I stopped crying. “You insensitive jerk.” I replied. “You don’t even bother to close your office door.” I could see from his office other patients in the lobby could hear what is going on. I continued on. “I will outlive you and dance on your grave. No need to call me next week, I would not trust you to take my temperature.” And out the door I went.

I was fortunate enough to get recommended to Dr. Stanley Schrier at Stanford the following week. After getting set straight on a regiment of Hydrea, Low Dose aspirin and phlebotomies I was back at work in just over a month.

Upon returning to work I had to meet with our employees. They were concerned as rumors had been circulated about regarding my health. In 1989 149,902 people were diagnosed with AIDS in the US and 89,817 were dead. Even in San Francisco there was still fear surrounding AIDS, especially among heterosexuals. Someone told one of my competitors I had a blood disorder, it was of course assumed I had AIDS.

Once this rumor of AIDS spread clients stopped calling and my calls went unreturned. I knew I had to do something so I left my office and for the next three hours visited all of my top clients to reassure them. Within two months I had most of my clients back and business was returning to normal.

It was easier to stabilize my business than my mental state. All my previous years of rapid behavior and thirst for spilling blood in business had caught up with me. Karma was kicking my ass big time.

As an MPD patient, when you are by yourself with no one else around some dark thoughts can enter your mind. It can become quite unhealthy if it lasts for extended periods of time, which is what happened to me. I remember thinking one morning “I am dying and my wife left me.” I was a maniac in business but I never really partied like my colleagues did. But I needed some extreme change and I needed it right now to break this dark thinking.

I went to the bank, grabbed $10K cash, and went to Vegas and into the arms of beautiful Strippers, Great Hotels and Casino’s. For the next two years that is where I went when I had free time. I loved pro football and I became a regular betting pro-football games at the Mirage. It took me a year to understand how the setting of the lines work for professional football. Once I did I got really good at winning consistently.

Things were getting better now except when I was at home and my kids had gone to bed. My life continually flashed before me. I felt sorry for myself and believed death was imminent. For months I had major anxiety attacks and was in and out of emergency rooms. Every time I was told the same thing. “It’s not your PV.” Dr. Schrier took me aside at one of my appointments and told me it was time to start living again and to stop focusing on dying. I agreed but did not know what to do. He recommended meditation and finally, to start dating again.

Getting back to dating

As I thought about dating I imagined in my head a conversation that would go something like this. “Hi, I am Jeremy. I am thirty something years old, recently divorced, my three children live with me. I have a great sense of humor. Would you like to meet me for coffee? Oh, did I mention I am dying?” Man, that would be a great opening line. Why would any woman want to date me?

Then one weekend my daughter Carrie asked me if her friend Ashley could come over. I agreed and Carrie said her Mother would bring Ashley, bye. When they arrived my breath was taken away by Ashley’s mom. I was mesmerized by Diane’s beauty and beautiful eyes, but she was married.

Several weeks later I was talking with Carrie in the car and she told me Ashley’s mom might be getting a divorce. The bells starting going off in my head but I was still nervous about asking her out. It took me six months to finally ask her out. I went over to her house and asked Diane some general questions. Basically stalling techniques to see if I could get the courage up to ask her out. Finally I stammered out. “Would you like to see a movie with me sometime?” She surprisingly replied “Yes.” I had Diane on my mind constantly now. I even told some friends about her. But I did not have my mojo back yet and finally a friend of mine said she would not talk to me again if I did not ask Diane out.

I was still afraid of having to tell her I had PV. Fortunately I did call Diane back and we went on our first date. I was so nervous and had butterflies in my stomach as we walked together in the park. I remember how easy it was to be with her and how good it was to feel something for someone again. But my PV and having to tell her at some point was still in the back of my mind. However, on another date when we finally kissed all the worries about my PV melted away. A wonderful kiss and the hint of something much better in my life made me feel as if I were healed. At least in the broken heart department.

As we got more serious in our relationship I finally told Diane I had PV. I remember it being a long talk. She did not run from me after our discussion and as we both fell in love with each other I grew to understand that the right woman would be capable of accepting my PV.

While my romantic relationship with Diane lasted three years she was the woman that taught me in spite of having PV at such a young age, life could not only return to some semblance of normalcy it could be even better. She was very passionate and created a place in our relationship that allowed me to be intimate in a way I had never been before.

After having gone through a terrible divorce with a woman who was severely repressed sexually due to her upbringing and horrible education from the Catholic Church. Diane opened my sexual world and to new wonderful experiences that changed my life forever. She made me a very happy man and with Diane, I had my groove back.

She also put me on a path of self-discovery that enabled me to explore things about myself I had not previously experienced. This eventually led to me better understanding myself and allowed me to eventually become a better man. We discussed mediation, yoga, reincarnation and past lives. All subjects that opened my mind to new possibilities in life. She helped me redefine myself and just as important I know longer saw myself as a dying man with PV that no woman would want.

Diane helped me move to accepting my disease and understanding that this could be a blessing if I could grow and understand this differently. While it took several years for this to take place, it saved my life.

I will always treasure what Diane taught me and the life we shared together. Without my relationship with Diane I surely would not be married today to my soul mate and best friend Mary Jo, who has completed my life. Having Mary Jo with me at my doctor appointments and helping me through my struggles has made every moment of falling in love again so very special.

Dating with an MPD is not easy but with the right person in your life it’s a challenge that can be overcome. It’s also important to have that special person to support you when you need it most.

Present day

I can feel the adrenaline begin to rush through my body as the salesman for my local Chevrolet dealer hands me the keys to my new Camaro Convertible. “It’s yours” he says as I slip behind the wheel. The leather seats welcome my now much older but skinnier body nicely. There is something special about the relationship men have with their cars.

As I slide behind the wheel I am quickly transformed back in time to the moment when my father hands an eager ten-year-old starry-eyed boy his first real bicycle. A father who smiles with admiration and adoration for his young son. These small moments in life’s long journey are the Kodak moments that never leave the mind of an impressionable boy seeking the love and approval of his father.

These special memories are preserved in our DNA forever. Unfortunately, they are also locked in there with the memories of this alcoholic father who disappointed his son by using his hands to get his point across.

Smith Brothers 1971

Had I disappointed my father so much that he forgot he was thesame loving man who handed me my first bicycle? Is this the same man who taught me the beauty of cycling and the incredible experience one can have with this simple vehicle? How can this be the same man?

As I turn the keys and the engine comes to life, the sound of a loud growl coming from a good ole engine of an American sports car coming to life really gets the heart pumping. I feel a lump in my throat and the goose bumps run up and down my arms. I release the lock to the roof and press the magical button and in a just few seconds, I am topless as I burn rubber out of the dealerships parking lot.

The beauty of being topless and the joy of feeling the Sun spreading her love all over my body is freeing. Five minutes later I am barreling down the Freeway at 95 MPH. My hair blowing all around and I am time traveling in my mind back to a time when my head was full of long thick brown wavy hair that went all the way down to my shoulders.

An incredibly beautiful Beatle’s song, one of my own personal MPD anthem songs, “Tomorrow Never Knows” is blaring on my radio now and I am loving life.

Turn off your mind, relax
And float down stream
It is not dying
It is not dying

Lay down all thought
Surrender to the void
It is shining
It is shining

That you may see
The meaning of within
It is being
It is being

That love is all
And love is everyone
It is knowing
It is knowing

As I pull in to my driveway I think how fortunate I am to have had these almost twenty-three wonderful years with PV. I close my eyes and think of me driving in the Camaro top down with Mary Jo and our Grandchildren. The Doors song Soul Kitchen comes on the radio. Jim Morrison AKA “The Lizard King” is belting out the line. “Well the clock says it’s time to close now.” A healthy reminder to me and for all of us, not just MPD patients, the time will come when life as we know it will come to an end. The clock will stop ticking. Even if a cure for MPD’s were to come a year from now all of us will still die at some point.
There is no cure for death. Accepting responsibility for taking charge of our lives and demanding that we as individuals overcome the obstacles that we stumble upon while on this journey. An MPD is nothing more than an obstacle of life.

Life does not have to end with being diagnosed with PV or any MPD. No matter your diagnosis, we are all in the same boat. The question is not if, but when and I am ok with it. I’ve lived a very full life and can finally say I live life today without any regrets.

And in the end

I studied history and science from an early age and loved both subjects. It made absolutely no sense to me that dinosaurs never exist in the Bible. If this book was the Word of God and life began with Adam and Eve then why is so much of history left vacant as if it never happened. What about life existing on this planet prior to 500 million years ago? None of this happened or even exists in the religious World.

As a young boy my first trip to the Central Park Zoo in New York City changed me forever. I looked in to the eyes of a young gorilla and chimpanzee that morning and at that very moment with no influence from my parents or teachers, I knew they were my family. Just as you might find faith in an invisible God or something spiritual in your life. I have found this same conviction with animals and the teachings of science.

People of faith often tell me I am “missing out on life by not believing in God – God or Jesus is taking us to a better place.” What they are really telling me is the place I am at right now is the shits. I love where I am now and for me, here is heaven.

We are free to believe whatever we want in this in life. This is why we have free will. Remember an amputee has never seen the miracle of new legs. I do not pray for a miracle cure for my PV because it won’t happen this way. I control my own happiness but I can never control my bone marrow nor does a God or Spiritual being. For me PV was not the end of my life but an incredible lesson in the fragile Yin and Yang of life. In the end PV was a new beginning for me; it can this way for all of us if we choose so. Regardless of our choices in faith.

My three-year old grandson Mason brings a smile to my face.

Owning your journey and understanding forgiveness are keys to it all. Once you find this out your life will be about what you choose to do with it and less about what has happened to you. I know this because this has been my experience.

Take me back to the Contents

© Jeremy Smith and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Jeremy Smith and MPNforum.com with appropriate and specific direction to the original content.