A year has passed…

Sunday, September 23, 2018.
I awoke at about 9:30 PM. My chest hurt. I carefully felt the taped area around the plastic port in my chest. It was tender to the touch. I went to the bathroom mirror and pulled down my shirt to look at it. What appeared to be a pimple next to my port caught my eye. I squeezed and popped it. Immediately, I was overcome by the most powerful chills I had ever experienced. I began to shiver to the point of quivering. My teeth were clacking. It was miserable. I went downstairs to my recliner and threw the biggest blanket I could find over myself. The trembling was uncontrollable. Finally, I warmed up enough for the chills to stop. I braved the trip back upstairs and I curled up under the blankets, freezing again. After 10 or 15 minutes I managed to make it stop and remained in that position until morning.

Monday, September 24, 2018.
I spent most of the day under a blanket but I managed to get downstairs and eat something. I felt awful. Mom was concerned but knew that if I needed help I would tell her.

That evening I was worse. I was curled up on the spare bedroom bed in the fetal position under 3 blankets when Mom came in and asked if I felt well enough for her to go out for a few hours.
Take me to the hospital! raced through my brain. Stupidly I instead said,
“Go ahead, I’m fine.”
At some point I made my way upstairs. I was feeling worse. The tremors were nearly uncontrollable. I crawled into bed. I vaguely remember soiling myself but I didn’t get up. The thought of getting out from under the blankets, my only salvation, was unbearable.
Call 911, you’re going to die! my brain screamed at me.
I don’t want to move, I can’t. If I die I die, a voice answered back. It’s over.

Tuesday, September 25, 2018
“Bill, wake up! You’re going to be late for dialysis!” I heard my mothers voice faintly. It took me a moment to realize she was at the base of the stairs. I looked around, I was on the bathroom floor. I forced myself to my feet and then immediately collapsed. At the sound of my crashing to the floor she raced upstairs. Mom assisted me to the bed, all the while asking me if I was ok, if I was able to get up and get ready. I answered her by falling forward and landing again on the floor. The next thing I remember was being hoisted off of the floor of my bedroom by two heavy firefighters. They needed my help to get me onto the stretcher. I had nothing to offer. They picked me up, placed me onto the stretcher. My arms flopped lifelessly from both sides of the stretcher as they struggled to get me down the narrow stairs from my loft.

I was brought to a waiting ambulance. I vaguely remember the chirp of the band radio in the ambulance, being asked a bunch of questions, having my soiled clothes cut off of me, the bumps of the ambulance banging around the bumpy side roads, some commotion as I was treated and begging for a blanket. I was cold. So very, very cold…

To be continued…

the flight of purpose

I sat on the deck this afternoon, enjoying the earthy smells of the woods following a rainstorm. The clouds were moving, chased away by the warming sun. I lit a cigar.

Then, interrupting my distracted gaze it appeared. It was a Monarch Butterfly, magnificent in its carefree romp around my yard. It zigged and it zagged, dipped and climbed but it always looked so easy. Dare I say carefree?

It seems to fly without a care, but I don’t think so. It has already endured so much, survived such a remarkable transition. It is not carefree. It is accomplished, full of purpose.

To live every moment of its short life.

Does its life span feel as long as mine? What if…he knows that he will die soon and is working against the clock to see and do as much as possible?

I can relate. Been there.

I am also looking at a short life. I crave fulfillment and fear lack of accomplishment. I have also been through a difficult transition and emerged a new me. I can’t sit still for very long because I am reminded that moments are few and not guaranteed and I get off the sofa.

The Monarch saw me waving to it, beckoning it to rest on my arm. He chose to keep flying and exploring. He had places to go. Resting on my arm would be a sofa in its own right.

Per usual, inspiration can be found in the smallest of things.

Human

Insomnia is a bitch, and it apparently is a side effect of dialysis. Lack of sleep equals negativity for me. When I am awake, I am going strong and doing everything I can to feel good. At night, the gladiators of Insomnia climb the perimeter fence and invade my Fortress of Solitude. In my exhausted and weakened state, I am unable to fight as they bombard with me with arrows of negativity. I lose my resolve and find myself starting each new day with a whole new hill to climb just to start at zero.

I’m also tired of trying to be something I’m not.

My last post was very unlike me. I was “maudlin” to quote my dear Bella. To be fair, she’s right. My post was depressing, dim and entirely unlike me. But as Bella said, “Superman is human, after all.” She knows it, you know it. But I need to learn it.

This ties in directly to the name of this blog. Many years ago,I was married with four young children. I was struggling in my career and facing severe financial problems. To add the cherry on top, I was sick. To not worry my family, to keep my job, to keep my sanity I chose to keep most of what was going on with my health to myself. I was told it was denial, I just chose not to think about it, to not let it define me. My wife exploded on me one day for not being forthcoming about my health and shouted angrily, “OK Superman! Do what you want, apparently you’re bulletproof!”

I never claimed to be bulletproof, I just try to be strong.

It’s been my way forever. I want to be the best at everything. Not in a competitive sense and not in a quest for glory. I simply thrive on achievement. I wanted to be a great husband, a great father, a great worker, a great co-worker and a great citizen. I failed at one, but I crushed the rest.

Unfortunately, now my life has been reduced to being great at staying alive.

I tackled the role of being sick like I do anything else. I buckled down, sized up my opponent (in this case, death), learned a skill set and dove in. The end game is easy, stay healthy and hope for a transplant. I set out to be the best dialysis patient ever, with a goal of not ever acting or looking sick.

It’s not as easy as I thought. I’ve had some rough treatments lately, severe cramping, volatile and unpredictable blood pressure and the effects lingered long after each treatment, sometimes late into the night. I get up early each day after treatment with the goal of trying to do something, anything that I can call an accomplishment. I hit the treadmill, I swing and press my kettlebells. I do pushups until I collapse on my own face.

Then I have those days that I wake and I’m unable to do those things. I wake up stiff, feeling pain with no basis, painful headaches and no energy. And I get mad at myself. I tell myself that it is not OK.

I need to stop doing that.

I am a mere mortal. I am comprised of flesh and blood, like everyone else.

It’s ok to be human.

I may need to say it out loud a few times, but eventually I will get it.

My last post was an anomaly, a rarity that is unlikely to happen again. I have no plans to change my Blog name to Superman can’t find a Xanax anytime in the near future.

Let’s talk about mortality

I woke this morning in the mood for a bit of spiritual refreshment. Yesterday, I spent most of the drive back from MA listening to Christian-Stoner music, an interesting genre, and I went to bed a little emotional. I decided to go to Church.

The day started off with Mom telling me in the car that I need to sing along with the hymns and read along with the “Responsive Readings.” Oy, I thought to myself, If she only knew how many times I had gone to church just to make her happy and she won’t stop pushing me. This is why I don’t often go. I had to remind her of my stance on the church. I hate the songs and I hate the responsive readings but I enjoy the sermon and the calming presence of many people in one room exhaling pure positivity into the otherwise tainted air. I stand but don’t sing or recite, and during prayers, I choose to have a moment of silence and contemplate an issue that is plaguing my heart. It’s still a positive experience. I’m just not into traditional religion. I call it the Kayak theory.  It goes as follows: Religion is sitting in church thinking about Kayaking, Spirituality is sitting in a Kayak thinking about God. She doesn’t get it.

The Unitarian Church in town in a nice place to be, for 186 years it has accommodated many faiths and served as a wonderful nucleus of the community. As can be expected, everyone knows everyone. What is not expected is the extraordinary generosity of spirit and resources for such a poor NH town. So even though I don’t necessarily enjoy church, I get to see the people in town that I have grown fond of. They pray for me, are always asking about me so I show up once in a while.

We were early. While the early arrivers mingled I picked out a nice inconspicuous place to sit. I often get judgmental looks when I don’t sing or read along so I choose my seat carefully. Mom and Dave can sit together as a couple, I’ll just hide over here. As I waited for things to start I scanned the room for my buddy John. He was a regular and I fully expected and hoped to see him. He is one of my few friends up here. Despite the fact that he is 86 years old.

I felt a surprise tap on my shoulder, I turned and it was John. He had sat down behind me. He looked terrible. Gaunt was the first word that came to mind. Worse than the last time I saw him. We made small talk, I asked him rhetorically how he was feeling and before we knew it the service was starting. He leaned in and said, “I have to talk to you after.” I nodded him an assurance and we settled in. I had a bad feeling.

The service began with a prayer. I said one of my trademark Billy Mac prayers. Something along the lines of:

Dear higher power, whatever or whoever you are. Give me the strength to deal with ignorance and the patience to not strangle the idiots in my life. While you’re at it, let me know why I’m here and what you want from me. Please take care of the good people and back the Karma bus over the jagoffs. And if it’s not too much would you mind getting that little cutie in the next row to notice me, yeah the one wearing what appears to be a very poor choice of undergarment to church (thank you for that btw). Oh yeah, no one ever asks you how you are…hope you’re doing great. Peace brother…

After several agonizing hymns and a lot of sitting and standing, I sat through a very enjoyable sermon. It put me into the state of mind that I came in hoping to achieve. Before I knew it we were heading to the back room for some badly needed coffee. I found John sitting in a chair near the door, I marveled at how fast he got there. I grabbed a hot cup and sat down next to him. I asked him what he wanted to talk about.

“My funeral”, he said matter-of-factly. I was taken back a bit and it probably showed on my face.

“You mean the one that’s hopefully many years from now?” I inquired despite knowing that it wasn’t the case.

“Billy, I’m on the way out. I know it. I’m not wasting valuable time. I’m planning my funeral and I want you to promise that you’ll be there as a brother.” You see, John and I are fellow Freemasons, we refer to each other in our fraternity as “Brothers”. It is a bond that runs strong and deep.

He then began to list the other arrangements he was working on. He calmly recited the list, as one would a list of what was needed at the market. A full Military funeral was in the works. There would be a Navy contingency and a Marine contingency because he served in both. As he continued to list the details it became achingly apparent to me the life this man has lived. He knows what he has done in his life, and despite his humble nature, he wants it to be recognized. He has been guaranteed participation by all involved except by the Masons. And that’s where I come in. To relieve his anxiety over not receiving the service most valuable to him, the Masonic Funeral.

I assured him that I would make it happen. He patted me on the leg and said “I’ve known you for a year and from day one I knew you were a man of integrity. I know you won’t let me down.”

I was at a loss for words but I managed to say,“no more Billy Nason’s.”

He nodded in agreement, I had hit the nail on the head. Billy Nason was a police officer from my hometown that moved up here to retire. He was a good friend of my Father’s. He was a Mason for 62 years. Despite the fact that he was ill for a long time and his death was expected, the local chapter of Masons failed to galvanize enough support to give him a proper Masonic sendoff. I, and a few local brothers were seriously pissed off. A true Mason knows that there is nothing more important to a Mason than our ancient ceremony to send a brother to the Celestial Lodge above. I’m not sure anyone feels stronger than I about it and John knows it.

Freemasonry operates in obscurity. For hundreds of years, men of good character have gathered in privacy and operated with anonymity. It is the most charitable organization in the world. We don’t talk about it or advertise it, we just do it. For the wives and families of a Mason, it is not uncommon for them to not know what it is that the Mason in their home actually does when he is away from home. Yet they faithfully supported the brother in his endeavors. The Masonic funeral is the one service performed publicly, for the benefit of the family, to show them a bit of what he was involved in and how much his labors were valued. I have participated in at least a dozen, many times for a brother that I never met. I didn’t have to know him, I knew what type of man he was. Every time, the family was absolutely grateful for us doing it. It’s an enormous show of respect for a good man. Yet, some Masons fail to see the importance and the turnout can be small. It’s a sad display when a fraternity of millions worldwide draws 3 or 4 guys because they simply don’t get it.
Pike

Not me, I get it. My new but dear friend has entrusted me with ensuring a very important part in the send-off of a wonderful man. I won’t let him down.

It was a morbid yet transcendent moment. It was disconcerting to have a dying man, one that you respect deeply, talk about his own mortality but I was deeply honored that he tasked me with such an important role.

It was an eye-opener for sure. I went to church on a whim, feeling somewhat aimless. I left with a direction and a purpose. That’s what I went in for. Mission accomplished I suppose.