Touching the moon

“Closer”, the father said to the boy.
The boy dutifully moved to his father’s instruction. “Better?”
“Yes, now stand on your toes and reach as high as you can.”
Again, the boy obeyed his father. “Am I touching it?”
“Yes, son. You are.”
There was a audible click as the camera snapped the photo of his index finger touching the full moon that he and his family had been admiring at the end of a wonderful family day on the beach.

For a short, magical time the boy actually believed that he had touched the moon. After all, there was a picture in the family album of it. But eventually he realized that it was only an illusion.

Many years have passed. Now an adult, he sat on the wall of the beach at low tide and looked longingly at the sky. It was his favorite spot, it made him think of his father who was long since deceased. He dwelt on the notion of happiness, in particular the distinct lack of it in his life. This spot represented the best time of his life. He stopped short at actually saying happiest, he had always believed that he had never achieved “happy” in its truest form.

Especially lately. The young, spirited and curious young boy that had grown into a bright, artistic if not aimless young man had married a woman that he thought he loved, but their life together was tumultuous and ended badly. He emerged from the marriage broken and disillusioned man. What his marriage hadn’t robbed him of was consumed by his illness. But he had one trick up his sleeve, his only one, his ability to put on a “happy”(there’s that word again) face and along with his already perfected “optimistic” face and his proven “I’m fine” face, his gallery of feigned emotions served him well for a very long time.

Until now. Although he could never recall being happy, he knew what it was and knew he didn’t have it. He had come close to it several times as he enjoyed the wonderment of his young children. Other than that, he felt that he was a stranger witnessing his life through a looking glass. Close enough to be there but just out of reach. It would have been bad enough to feel like a stranger in his own world, but it had metastasized. He was now a truly joyless creature.

He reflected on his new existence, courtesy of the recent events of his life bestowed upon him by his now life-consuming chronic illness. He wondered when the social extrovert he was notorious as became more comfortable being alone. When did his body become so weak that it immediately dismissed his (still) sharp mind’s desire to do things? When did he become the guy who stopped making plans because he knew he would probably cancel at the last minute? He wondered why he goes to bed early to rest up for nothing, to then get up early to get ready to go nowhere? When did he stop hoping that the next day would bring better things, a miracle of sorts to end the nearly endless cycle of clinic sessions and Medical appointments? Short of stopping to pat the head of a stranger’s dog, he rarely even smiled anymore.

He was sick and tired of being sick and tired. Tired of being strong for everyone and draining his precious remaining energy in the process. Most of all, he was exhausted from making a fake smile and telling those that loved him that he was ok and that things would get better. Only one person was being strong for him. And she was so far away. As far away as the moon.

He hadn’t noticed that the sun had set. He had brooded throughout the very sunset that he went to witness. In the sun’s place stood a magnificent full moon. A moon so bright that it boldly stole the sky for its own glory.

He recognized a metaphor in his musings and the beautiful coincidence of a full moon just like the one his beloved father had photographed of him at this very spot when he was a boy. The moon was just like happiness. He could see it, feel it, admire its beauty. He could even reach with outstretched hands and appear to touch it. But in reality, the cruel harsh mistress that she was, both were in fact light years away and the appearance of touching either was just an illusion.

Rest well, my Brother

“The roll of the workmen has been called, and one worker has failed to report”.

I dutifully hung my head as the familiar dialogue of a Masonic Funeral was read. I’d been in many Masonic funerals in my years as a Freemason. It is a beautiful ceremony, the same one performed for George Washington, and a show of respect for the fallen brother and a glimpse for the family into the ways of the fraternity the brother’s family never saw. They always make me sad, but this one really hurt.

This brother was also a very close friend whose loss I know I will feel for a very long time.

I first saw Adam from across the room at a meeting. The first thing I noticed about him was the absurdly round face. I observed that he was heavy, but his face was bloated beyond that. When he stood up I could see that he was in pain. This man had a story to tell.

As the room cleared at the end of the meeting I saw the small crowd gathered around him. Handshakes, hugs and greetings abounded, it was obvious that he was a beloved member of the lodge. I made a goal of getting to know him.

During cocktail hour I walked across the room and introduced myself. Never one afraid to approach a stranger, I stuck out my hand.

“Greetings, Brother. My name is Bill”. He stuck his hand out, “Adam.”
And thus began a beautiful friendship.

Adam had joined Freemasonry at the suggestion of his father. It was suggested that he would make friends, enjoy the fraternal bond, if nothing else to have something to do to get his mind off of his problems. He had many, chief among them being a Cancer survivor.

Adam was diagnosed at the age of 30 with Mantle Cell Lymphoma, a highly aggressive cancer with a very low survival rate. Newly married, with a flourishing career and a young son, his life came crashing down. He survived, thanks to the wonderful gift of a bone-marrow transplant from his brother. It was an agonizing, extremely painful surgery for both, but his family continued to make every sacrifice they could for him.

A year later, Adam was living with his parents, sleeping in his childhood bedroom, a mountain of prescription bottles at his bedside. Divorced and friendless because his wife couldn’t handle his illness and his friends stopped calling him. Seeing his son every other weekend was the only glimmer of hope for him, he would tell me one day, keeping him from taking his own life.

I learned part of his story from mutual friends before he and I actually spoke of his travails. As our friendship blossomed he gladly told me the rest. Over lunches, cocktail hours at the lodge (his lodge, that I joined to spend more time with him) and hanging at his house he would tell me the stories about the events that led him to this point.

He was grateful for his new friends and humbled by the support of his new brethren. His father had been correct. His father was a 50 year Mason when Adam entered the fraternity and his father was enormously proud. His mother proudly beamed at the results his new circle had created for him. I vowed to be one of the best friends he would have.

Adam didn’t just take friendship, he gave it back. When he learned of my health issues he became one of my biggest advocates. He spent time at home on his computer researching possible treatments being developed, texting me his findings and always checking in to see if I was eating right, taking my meds, or just to see how I was doing. It isn’t lost on me to this day how someone who felt like garbage almost every day could manage to check up on me, and all of his friends for that matter, to see how we are. He was a special friend.

In the course of our friendship Adam had a rollercoaster of health challenges. On a flight to St. Louis he contracted a virus that caused him to spend 7 weeks in the hospital. He almost died, but he pulled out of it. He had two knee replacements, a hip replacement, a pacemaker and was hit by two more staph infections, one that required removal of both knee replacments. At the end of all of it, there he sat with his absurdly swollen face, a result of a massive amount of steroids and other medications. He was a fighter like no other I have never met. As his Facebook announced another setback, myself and all of his friends had faith that the tough sonofabitch would bounce back and smile that huge smile again.

This past December, Adam met a foe he couldn’t overcome. Another staph infection that the Doctors, despite their Herculean efforts, could not pull him out of. He was forced into a medically induced Coma at the end of January.

I found out too late, for some reason his father’s FB wasn’t showing on my newsfeed and by the time I knew it was too late to visit him. Had I been sitting next to him he wouldn’t know I was there. All of my prayers from afar wouldn’t change it. His parents thanked me for my friendship and support, I knew in their voices they had given up this time.

He died a few days ago.

I miss my friend. I regret not being able to thank him for his unwavering friendship and his eternal optimism. His selflessness in the face of adversity that would cause so many to wallow in a pool of self-pity. He was an amazing human being.

As I stood silently in a moment of prayer, I was flanked by dozens of brothers who knew Adam as I did. We all knew his family. We all knew the efforts he made for our lodge as he took different assignments to keep himself productive, a concept that meant the world to him. We all knew what a loss we had experienced.

I waited patiently as the procession slowly entered the funeral parlor, each waiting our turn to place a sprig of evergreen, a masonic symbol of the eternity of life, on his simple coffin. A rare tear fell onto my cheek, one of many that would fall that evening.

He is resting now, his pain is gone. The irony of it is that the cure for his disease killed him. If he were here right now he would laugh at that line, we shared a morbid sense of humor. Sharing the burden of Chronic Illness, we knew that laughter is the best medicine. I want to laugh at the funny exchanges we had over the years. I can still see his big, round face that initially caught my attention. The smile that shone through some tremendous sadness, the face of a truly great person.

Rest well my friend, I hope to see you again someday in the Celestial Lodge above that we, as mere mortals hope to achieve at the end of our journey.

Just jot it Jan # 24–Zoomie

Your prompt for JusJoJan 2019, January 24th is brought to you by Bee! Click here to find her last post and say hi while you’re there! Bee’s word for our prompt today is “zoomie.” Interpret it any way you’d like, and use it anywhere in your post or make it the theme of your post. Have fun!

I’ve been away from the blogging world for a few days. That old “life” thing is getting in the way. But I took on this challenge to ensure that I write something every day so I’m going to make up each day that I missed.

Right now I find myself in the dead of winter. It’s cold, very cold. Everything is frozen. There is not a lot to do where I live and on top of everything, despite my beloved Patriots being in the Super Bowl I am dreading the month of February. It will be a long, snowy, cold and football-less month.

But…this is a big But (I love big buts…sorry had to), I look forward to Spring. With chronic illness being a daily obstacle and a recent near-death experience in my rear-view mirror I have begun to set manageable future goals to give me something to, well not trying to be morbid here, something to live for.

One thing I plan on doing is riding my new Motorcycle. I bought it in the fall to have something to look forward to in the Spring. The anticipation of riding it has carried me thus far through the winter. It gives me hope of enjoyment, of freedom, of reveling in nature’s wonders with the wind in my face and bugs in my teeth.

I am going to attack life when Spring hit with such a vigor that it won’t be just fast…it will be damn zoomie.

3,2,1…Hope

I have again been invited to participate in a quote challenge. My participation in such challenges is spotty at best but I want to introduce you to Lisa @ All About Life. She has a great blog. She’s very positive in her posts, interesting, a loyal follower, great commenter and a all-around cool chick. If you read her, you will want to follow her. Thank you Lisa for the challenge.

Today’s topic is Hope. A perfect topic for me to discuss. My entire life centers around it. I walk this earth with the belief that things are one way or the other. I have been called “Black and White” many times in my life and it wasn’t a compliment. I never backed down from it. I believe in absolutes, especially in matters of attitude. One thing that has always sustained me, that has drawn the respect and admiration of my peers, is my optimism.

When you are chronically ill you really have only 2 choices in how you approach life. Negative or positive. You either dwell on your situation and ask “why me”? or you deal with it by getting through the hard days, rejoicing in the good days and always, always look forward to the time when you will feel better every day. Even if that day never comes…live life as if it will.

I can think of no better way to discuss hope than to showcase my favorite movie, The Shawshank Redemption. If you haven’t seen it, the nuts and bolts of it is a innocent man sentenced to life in a brutal prison. Can you imagine being innocent, jailed for life and screaming with all of your being that you don’t belong there? How long must a day be, what motivates you to get up and live with that crushing weight on you?

To start things off, the best quote of the movie is
Quote # 1

Andy Dufesne

Doesn’t this say it all? While it doesn’t explicitly have the word hope in it, it is the true essence of hope itself. This is my philosophy in a nutshell. Negative vs positive, backwards vs forward. Optimism, hope itself is a choice. The choice you make will determine your path and how others perceive you. I choose to get busy living because, even if I was in prison, I would always believe that I would be vindicated eventually. The truth always reveals itself and I would want to be there when it does. I choose to get busy living.

“Red”


This is the flip side of hope. When you look at your situation and determine that it is indeed going to define you and therefore hope is fruitless. In this case Red has resigned himself to being institutionalized for life. The walls he used to challenge had begun to give him security. The idea of a life outside of those walls became a fantasy, one that became dangerous. It challenged his reality. My only challenge to this, and again I have never been faced with such circumstances, is that one never knows the future. If you aren’t open to the possibility that tomorrow may hold a surprise then you reduce the likelihood of it happening. In this case, Red was paroled and he was suddenly faced with a whole new set of “hopes”. Ones that were once impossibilities became his new reality.

“Hope springs eternal” is a popular saying. There is a caveat…you need to be open to it. Choose hope. Don’t complain. Noone needs to hear it, it accomplishes nothing, and at the end of the day that may be how you are remembered. 

You don’t want that.

I’m not going to nominate anyone, but feel free to play along. I’d love to see what you come up with.

Why me? Why NOT me?

“Listen carefully, Billy”, my Grandfather said. He looked me straight in the eye.
I cried because I had no shoes. Then I met a man who had no feet.”
“What does that mean Grandpa?”
“It means, Billy, that you should never complain because there is always someone who has it worse than you. Be happy with what you have.”

I was a young boy when he said that to me. I don’t remember what I was complaining about but after that exchange I learned that men, men like my Grandfather, don’t complain.

Have I complained since then? Of course, it happens. But my brain immediately flashes back to that quote. And shuts me down. It has served me well, in fact it was one of my greatest life lessons and shaped who I am today.

People often told me during the height of my Illness that my positive attitude, and crippling denial, inspired them. I wasn’t waking up with the intention of inspiring others, I was just listening to my Grandpa. I was keeping my kids from worrying about me. I didn’t want to burden anyone.

People tell me now that my jokes and overall positive attitude about my current situation helps them. How else am I supposed to be? Should I complain? It’s not my style. It’s not becoming of a man. And nobody wants to hear it.

Why?

Because someone always has it worse. I know it. I’ve seen it.
I have friends who have lost children at the toddler stage to cancer.
I’ve been to Children’s hospital in Boston and read books to children who would never leave that hospital.
There are families everywhere dealing with dead children, wounded Veterans, mental illness, MIA’s and POW’s, gun violence, terminal illness, no Health Insurance, pending bankruptcies, the list just goes on and on.
They all have it worse than I do.
Most of them wish they, or those that they lost, were only on dialysis.

I’m strapped to a dialysis machine 3 days a week. So what? I’m alive. It may kill me, and then again, I may get a donor. It could be always be worse. One thing I have learned in my 53 years of walking this green earth is that I’m not special, I’m just a cog in a great big wheel. I never say Why me?
Why not me?

I have always said that where I am is where I am suppose to be. That applied wherever I was. Why isn’t it feasible that I am right where I am supposed to be doing what I am supposed to do at this moment?

I was given a brutal reminder of this tonight when I got a call from my friend Steve. I met Steve when I lived in an apartment complex as my family tried to bounce back from the foreclosure. We were instant friends. We hung out often and had a lot in common, in particular crumbling marriages and the love of our children. When he got divorced and moved, we stayed in touch.

Steve became very ill after he moved. His diabetes, once under control, had destroyed his liver. He needed a transplant. When I had mine, he was the first friend to visit. He had questions of course, but he was there as a friend.

Flash forward a few years. Steve was deteriorating. It was affecting his job as a Teacher. He was missing work and couldn’t find a balance in his meds, the side effects were destroying him. Soon after, a group of Teachers that praised him to his face went on to stab him in the back. He was forced to defend his ability to enlighten young minds to a committee of people who wanted him gone. After suing the Teacher’s Union he claimed a meager, insulting settlement and he walked away with his dignity in his pocket. No accolades or thanks for his 20 years of service or retirement party.

Steve lost most of his friends. Or they lost him. He is now pending disability. He just sold his car because he can’t make payments. His ex-wife is taking him to court over child-support he can’t pay. She knows he’s trying without income but wants to punish him. He can barely talk, an hour after he takes his meds he loses control of his voice. He is on a list for a cadaver transplant, it’s his only hope. Unlike a kidney, a Liver cannot be given by the living.

Tonight, I asked if he would drive up and spend a couple of days with me. He can’t because he has to be nearby in case there is a fatal car accident that will produce a proper tissue match. Plus, he has court tomorrow because his ex-wife is not done ripping his testicles from his scrotum.

Steve would love to be me. Right now, I love being me. I have friends and family who support me. My wife acted with dignity and compassion in our divorce. My children love me and will never be a pawn in a big game. I won’t die if I don’t get an organ donation in the next few months.

I worry about Steve right now, he has been a good and loyal friend. I am not worried about me right now at all.
Why?
As sick as he is, he was the one to call me to see how I was doing. How about that?

Were you to ever utter the words “what else can go wrong?” the universe very well may take it as a challenge.

Hope

If I could pick one thing that I have always had an abundance of, I would say it is hope. I have left many impressions on those around me, some good and some not so much, but most everyone saw me as optimistic. As life kicked me to the ground repeatedly, often at my own request through stupidity, ignorance and drunkenness, I got up and dusted myself off and looked to tomorrow to be a better day. It wasn’t forced, it was just how I was. My glass, usually containing beer or scotch, was usually half-full and always refillable.

I came to rely on my optimistic nature as I became sick. Despite being diagnosed with a potentially life-altering (and possibly ending) disease in my early twenties I refused to let it define me. I cruised through my twenties at a frenetic, often drunken state and really never gave it a thought. When I had a “episode” of peeing coca-cola colored urine, searing lower back pain, severe fatigue and bedrest I was of course reminded in the starkest of ways. But when the symptoms went away I pushed it to the back of my mind again.

In my thirties my disease progressed. My “outbreaks” were more frequent. I was forced to face up to it more often. In the interest of protecting my family from worry and my employers from firing me, I tucked it deep down inside. I then added denial to the mix, because “not thinking about it” wasn’t doing the trick. I still had so many things to accomplish.

Despite being in crushing debt I was hopeful that a big break would come so I worked crazy hours to make more money. All that I achieved was higher blood pressure and the knowledge that no matter how much I made my wife was spending it as if she was a drunken sailor with a fist full of Viagra.

My higher objective was to make the best possible life for my family. The hours, the career changes, the constant worrying about money was in the interest of making sure that my family had everything they needed. My larger hope would be that I could somehow save something for their future. Alas, that was not to be either.

I cruised through my thirties on my rocket ship of denial, fueled by hope. I even entered my forties with just a few outbreaks. Then, at age 41 I was told that a transplant was definitely in my future, there were no other options. I was initially floored. I will admit that there was a emotional breakdown involved. When you avoid crying most of your adult life you are only sticking your finger in the dyke. Eventually the dyke will burst, and this one did. But just like that, I was over it and I was overcome by a powerful and inexplicable sense that this it work out. I had a deadline, and that was to avoid dialysis at all costs. It was my father’s influence on me, he always, to a fault, said that “everything will work out, it always does.” My Dad had a shit life, but he had an abundance of hope.

In my late 40’s, teetering on the edge of dialysis and in the hospital again with a renal-related infection, I was told by my boss that in my absence from work a co-worker had stepped up and offered to be tested for donation. A girl that I barely knew. I had hope. I was told that the odds of her, my only donation offer at this point, being a match were slim.
She was a perfect match. Hope wins. Despite the odds.
We did the surgery 4 months later. I came out of the surgery like a bull out of the gates. I was full of energy, the desire to be better at what I knew, and to tackle those things that I didn’t. I committed myself to recovery. I was back at work in 33 days, that has to be a record. My doctors told me to take it easy. I told them to get lost.

I mountain-biked with the big boys. I set a personal best on the bench press. I lost weight.  I joined a charitable fraternity and paid it forward. I got propositioned by a smoking hot 27 year old Latina at work. Things were great. Well, my marriage was still a train wreck and my finances were in a shambles but I felt great. This continued for 5 years. Then one night, while serving a charity dinner, I suddenly cramped up and was unable to stand. I knew what it was. The next day my doctor confirmed that my new kidney was failing.

I was crushed. I felt betrayed. How could they have not told me that my disease could return? I felt that I had been given false hope. It was only later that I realized that if I was told the potential of failure I may not have tackled life post-transplant as I had. I may have just sat on my ass and waited for it to happen.

When I got divorced, moved in with my mother and applied for disability I pretty much lost hope. The last year has been a year of hibernation. I miss my family, I miss my friends and I miss working. I miss tackling each day like a warrior.

Then, last month I was fortunate to be offered the prospect of another transplant. Again, I have hope. Yet I am cautious. I am nervous. I find myself withdrawing from my friends and family. I am haunted by the prospect of it not happening, or not working out. Every day, every Dr visit is part of the waiting game. I am deathly afraid of false hope.

That’s why I have been posting poetry and dabbling with my “Jack Valentine” saga. I am dabbling in the fantasy world to avoid reality. Writing about my real life, as I have always done with a modicum of success, seems out of reach.

Maybe I need more of the one thing I have always lacked.

Patience

 

Acceptance

I want to thank those of you that read and interacted with me on my recent “you don’t look sick” series. The series started out as my take on having a condition but not allowing it to define me. I allowed it to morph into my telling that basic story that has pervaded my entire blog but in greater detail. In a sense, I told my whole story.

I reviewed the series this morning, fearful that I had painted too vague a picture and not stayed on point. All in all, I think I said what I wanted to say and stayed on point. I also read the comments and it was then that I realized that I had left something out. Considering that I read Elizabeth Kubler-Ross in High School when two of my best friends died in a fiery car crash I should have recognized that I left out Acceptance.

When I began this blog I was at a low point. The title itself, Superman can’t find a phone booth, was conceived in a hospital bed and suggests the futility of being once-powerful and now without an outlet. As my blogging journey progressed I began to come to grips with my homelessness, financial situation, relationship with my children, deteriorating marriage and place in the world. The one thing I did not embrace was the obvious-to-everyone-but-me fact that my illness was not to be ignored anymore. No amount of positive thinking, Tony Robbins podcasts or denial was going to make me better.

I speak often of the fearless, forge-ahead at all costs attitude that I was able to maintain for so many years. I still maintain that it was the right thing to do. I managed to keep my family worrying about me to a minimum and it allowed me to work for as long as I could. But, I always rejected the notion that it was denial. I joked about it when confronted with it, spinning it back on my detractors with its success rate. Hell, even my doctors begrudgingly admitted that it worked for me. But only recently, perhaps it was today when reading the comments of some bloggers who are “in the know”, it occurred to me that I have moved past the denial phase and have achieved Acceptance. This is a bittersweet step for me.

I can accept that my condition will not go away if I ignore it. But I’ve never really allowed myself to think openly and honestly at what the future holds, even though I know. Years of Dialysis, a possibility of another transplant and a hope for a cure. Without my denial, will I resign myself to this path or fight it?

I can accept that I may never work full-time again. This kills me. But my recent dabble in part-time work, albeit fun, has taken a physical toll. I don’t think it’s a matter of conditioning, my body really can’t take it. Consequently, I have to accept that 2 days of work requires two days of recovery.

I can even accept that I will likely live in my mother’s house until the day I die. It’s technically mine, she is leaving it to me, and she will outlive me anyway so I’m getting my inheritance now.

What I am having difficulty accepting is how lousy I have felt and the lack of breaks between symptomatic episodes. I have always had “flare-ups” of gout, edema, cramping and other fun little side effects of kidney disease. But they passed and I would experience a period of relatively good health. Since this past summer, it has been something almost every day. For a while, I was hopeful that I would improve, be relatively symptom-free and look to the day when I can resume some of my favorite activities; biking, hiking, weight lifting, basketball. Today, as I have spent most of the day on the sofa because my blood pressure is dangerously high, I am lightheaded and dizzy when I stand up and extremely listless and unambitious after a busy, but not that busy day yesterday. I am down, and I never, ever get down.

I don’t know if I can accept that a mere 3 years ago I was playing basketball with teenagers, yet my shoes are now collecting dust.
That I was a part of a mountain bikers group that became great friends but now my bike is sitting sadly in the corner of my garage.
That I was at the gym 4 days a week, moving weight and feeling strong. Lately dragging my ass out of bed counts as Cardio.

Fortunately, I do accept that I will never completely give up. I keep the bike and the shoes not to torture myself but as a reminder of what feeling good feels like. In the event that things turn around, or dare I hope for a medical advance of some kind(?) that these things will be at my disposal again.

I’ve never mixed hope and realism before. So far I can tolerate the taste. It’s not the same type of relationship as giving up and accepting.