the words left unsaid

I love my dialysis nurses. I think they do God’s work and I appreciate them. They do more than stick needles in my arm, they monitor my welfare and genuinely care about me and make a very difficult transition for their patients easier. Of course, I can only speak for myself but the nurses have a special place in my heart.

One nurse I am particularly fond of is Jesse. Jesse is one of the youngest nurses at the clinic and I have felt a special chemistry with her since the day I met her. We share a devilish sense of humor which is tampered by her strict codes of conduct in the clinic regarding patient interaction. Still, we manage to have flirty and somewhat sexy conversations in sneaky ways, even the exchange of glances or funny faces. I love it when she’s there, it makes the time pass a little better. It’s safe to say that if there wasn’t a clinic policy against dating patients, we would be a couple. Just one more example of how my life is.

C’est La vie.

I have gotten to know her over the last year and she tells me a bit about her personal life. I know she doesn’t share with many patients, we have a special connection. I know that she has 2 very cute daughters, aged 5 and 3. I know that their father used to live with them and watch the girls while Jesse was at work. I know that he recently moved out and she is single (not that I can do anything with that knowledge). I also know that Jesse hasn’t spoken to her father in years. She has revealed enough for me to know that her relationship with her dad was less than stellar. Let’s call it what it is, she hated him.

Last Tuesday Jesse was in a terrible mood. She was quiet and frequently teared up. She wasn’t speaking to anyone with the exception of the communication necessary to get someone set up on the dialysis machine. It bothered me a bit to not have our usual back and forth but it had nothing to do with me and I figured whatever it is will work out and she will be in a better mood next time. Unfortunately, the next time I saw her she was no better.

I decided to engage her. I remarked to her that she was in a bad mood again. She then came over and said “I’ll tell you, but you’re one of two people I’m telling. I haven’t told anyone else. She paused and said, “My father was killed in an accident last week.”

I was stunned. Of course I had no words to offer. I offered her a hug and half-joked that maybe I can give her some of my strength. She teared up. She wasn’t working that day so she soon left. I had several hours left and most of them were spent thinking of her.

She had a difficult road ahead. She has lost her father. In addition she had the burden of knowing that they had a terrible relationship. On top of it all, I know that she had to be torn by those words. You know those words…the ones unsaid. I’m sure there are regrets. I’m sure there are unresolved issues. I’m sure that she was right in how she felt about him but never had the one thing we all crave in the end. Closure. She has a long road ahead of her and there is nothing that I can do that will help her reach closure. I wish I could in the worst way.

See, she’s not the only one with unresolved issues and things unsaid. I wanted to tell her how I feel about her. That I have been pining for her for a very long time. Hopeful that there is a way around the clinic’s policy against patients fraternizing/dating staff. I wish she knew that I would ask her out in a New York minute if I could. I want to be with her so very badly. And I can’t until I am no longer a patient of the clinic or if she leaves the company. Neither seems viable right now, I need a transplant, it’s the only answer. Until that unlikely event, it’s just not going to happen.

I went to a local fair today and it wasn’t 5 minutes before I ran into her. She met my daughter and my friend Eric. It felt naughty to be talking to her because it was forbidden on so many levels. But we talked for a few minutes and it was really nice. Not to mention that she looked beautiful in the early afternoon sunshine. As we parted ways, I hugged Jesse and bluntly said “We need to find a way around that company policy because I want to be with you.” I amazed myself at how bold that statement was. But I felt better for saying it. They were no longer words unsaid. I said them. It was the truth after all and now it was out there. I think she knows that I’m into her, now it’s confirmed.

When we parted ways and walked away my daughter, who already knew my feelings for Jesse said, with her usual candor, “ You need to marry her. She’s beautiful, she’s awesome and she’s into you.”
“You think so?”
“Oh yeah.”
“Well, a lot has to happen before that happens.” I said. “But I think she is worth waiting for.”

A year has passed…conclusion

October 4, 2018
I woke up to a team of Doctors standing at the foot of my bed. It was early. or at least it seemed like it was. I hadn’t slept much the night before. The head doctor began listening to my lungs, feeling my legs, being a general nuisance as the rest of the white smocks scribbled frantically on their notepads.
“You won’t remember me, sir but I’m the doctor that was on duty the night you came in.” He was looking me dead in the eye. “I’m having a hard time believing that I’m looking at you right now. You were that close.”
“That’s what I keep hearing.”I said. “I must have been in bad shape.”
“Bad shape doesn’t begin to cover it. You were on the edge of death. How do you feel now?”
“Grateful.”
“You’ve been given a second chance . Take advantage of it. You may be going home in a couple of days if you feel up to it. You need to walk for me before I sign your release.”

I rolled out of bed, with difficulty of course, struggled to my feet and began to slowly walk out the door. The team followed me out and watched as I walked to the nurses station and back. I was wobbly but I did it.
The doctor asked me when I had mastered that, to his knowledge I had failed the day before.
“Last night while everyone was sleeping.” It was then that I noticed Olivia had joined the group.
“Bill is a determined one” Olivia offered. I smiled at her. The team left my room.
“I want to go home.” I told her.
“A couple more days I think. Your fever is still erratic.”
“I can’t take being in bed anymore.”
Her concession was to sit me up in a chair where I spent almost the entire next two days. I continued to try to put the pieces together.

It was my ex wife that filled in the holes for me. She painted a vivid picture for me of what it was like to see me like that. She had visited me every day, I was impressed. At one point or another all of the kids had come to visit me. Unfortunately they all came when I was sedated. The sight of me with a breathing tube, unconscious was a bit much for my youngest daughter. My oldest son, who was on his way to visit his girl friend, was told to turn around. He asked why he couldn’t come in the morning. He was told “Because your father might not make the night.” Of course he rushed there.

October 6, 2018
I was released in the morning. Mom came to pick me up. When I got home I sat on the deck, enjoying some natural sunlight for the first time in 11 days, and opened my mail. The first letter I opened was from Medicare. My health Insurance had been cancelled. Effective that day. Turns out my SSDI had gotten approved and I was now fucking rich and wasn’t eligible for state assistance anymore. I tore it up and went inside.

I had just fallen asleep in my recliner only to be woken by my mother’s best friend Arlene.
“I didn’t think I would ever see you again, Billy. Welcome home you tough bastard.”
“Was I really that bad?!” I asked. It seemed I was asking that to a lot of people. Her face said it all.
Many more townsfolk would say that very thing to me in the ensuing days. They all thought I was going to die.

There are lot of takeaways from this whole incident. I was grateful and impressed with the Hospital. I was thankful for the support of family and friends. I awoke one morning in the dialysis room only to find one of my 3AM buddies Jeff next to me patiently waiting for me to wake up. He had been there for 45 minutes watching me sleep. Now that’s a friend. Later that night two more great friends and their wives visited me. They sat for hours with me, they walked the halls with me, supporting my weight when I wavered. Of course I’m haunted by the way they were looking at me. The words “Dead Man Walking” came to mind. They were scared and it was disconcerting. But overall I am moved and eternally grateful to them for the visit. It really meant the world to me.

Another takeaway is that I am proud to have been gifted with toughness and a survival instinct. In order to survive, one must have a reason. I must have had plenty of reasons to defy the odds, as I was told so many times that I did just that.

I’m a fighter. I’m stubborn and I never quit. This incident is just more evidence that it wasn’t my time. I’m not ready for a dirt nap. My life is compromised but it is not over. I have weddings to go to and Daughters to give away. I have grandchildren to meet and motorcycle rides with my boys. I believe that in my lifetime there may be a cure down the road for me. I want to be there if it does.

My last takeaway? Even if I wasn’t awake, my ability to fight death is there and it is stron. Even unconscious, I do not fear dying.

I fear not living. And that is a powerful thing.

I’m also grateful to be here to tell this story, and that is also a powerful thing.

A year has passed…cont’d

September 28, 2018.
I awoke in a trauma center room full of beeping machines, staring and inquisitive medical staff, lots of plastic curtains and my ex-wife, oldest daughter and my mother.

You can catch up here.

“Where are the 2 fat firefighters?” I asked.

“Oh, he’s fine” she said. She then began to laugh, if you could call it that. A nervous laugh of relief if anything. My wife had buried her face in her hands.

Very confused and in a bit of a haze, I asked why they reacted as they did. As it turns out, the Dr. had just cautioned them that when I awoke there was a distinct possibility that I could suffer some type of cognitive loss. My first words after being medically sedated for 2 days being a joke, they were convinced that I was ok.

But of course I wasn’t.

It took me a while to piece together the events of the previous 3 days. I had no recollection of them so I had to rely on accounts from my mother and my medical team. Both were being light on details and, even in my foggy state I knew that it wasn’t good. Initially, all I was able to learn was that I was rushed to a local hospital that was ill-equipped to treat me and sent me away after dousing me in ice to lower my fever. Which, by the way, was measured at 104.9, a fever that a man my age rarely survives. I was then taken 65 miles away to a hospital with a Trauma center and immediately heavily sedated as they worked to control the septic infection ravaging my body. I was sedated for 2 full days. At one point my mother was asked if I had a Medical Proxy and a Advanced Directive, AKA a DNR (Do not resuscitate.

My Dr. confirmed and explained Sepsis to me and the reasons for Sedating me for 2 days. Apparently I was extremely fitful as I was being treated and I kept tearing the breathing tube out (that was the first time I realized I had had a breathing tube). He was very focused on my treatment regimen going forward. My mother was light on details, she was very upset by the ordeal. It wasn’t until I spoke to the Night Nurse, a real good guy that worked every night that I was in ICU. I explained to him my need for info and my confusion about what had happened to me. He took off his glasses and sat down next to me.
“A guy doesn’t get any closer to the other side than you did. We’re all amazed at your recovery. We thought we lost you.”
“Really?” I asked incredulously.
“Yes, if I wasn’t a religious man before I would be now.” He paused. “It was that close.”
I could do nothing but stare at the white ceiling.
“And you’re not out of the woods yet.”

What followed was a full week of restricted bed rest. I was severely limited in how much I could move because I had a temporary dialysis port put in my hip that was in danger of rupturing causing me to bleed out. For 4 long days they ran every antibiotic known to mankind through me until my fever stopped spiking. By Sunday I was able to be moved to a regular room.

I wasn’t out of the woods yet. The infection wasn’t done yet. I had several relapses plagued by sweating spells and rampant chills in no particular order. I wasn’t able to eat much. I was still forced to stay prone in bed, it would be 2 days before I could even sit up. I was in a private room but there was nothing private about it, nurses and teams of doctors were in there constantly monitoring my every function. My only reprieves, as it were, were my dialysis sessions upstairs.

Eventually I did stabilize, much of it was a blur. I did have plenty of time to get to know the nurses as I recovered. In addition to their youth and attractiveness they were very friendly and good at their jobs. I struck a rapport with a few, one in particular couldn’t get enough of my jokes and my story. She came in every time she had a minute and asked me more questions about my Chronic illness journey. Her name was Olivia.

On day 9 Olivia came in with the physical therapy team. They were tasked with getting me to walk. I had been bed-ridden for 8 days and it was amazing how atrophied my muscles were. 3 nurses got me to the hallway with the goal of walking to the end and back. I was only able to support myself for 3 steps and I collapsed. I would try 2 more times that day and I fared only slightly better then. I was returned to bed. Olivia told me that they wouldn’t consider letting me leave, fever vanquished or not, until I could walk.

By the end of that night I was able to walk the hallway end to end twice before collapsing into bed again.

to be continued

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 curator of my America

Nabokov called his talents “banal” and a waste of brilliant technique. The highbrow art critics called his work “bourgeois” and “kitsch”. He was unjustly called an illustrator instead of an artist. Norman Rockwell didn’t care. He painted what he wanted to and gave the people what they wanted in his idealistic, sentimentalistic portraits. Over the course of 47 years and 323 original works, his perceptive, nostalgic eye for his America graced the cover of the Saturday Evening Post.

Born in New York, he eventually made his way to New England. He first lived in Vermont and eventually landed in the small Western Mass town of Stockbridge, Massachusetts. He did most of his painting there, eventually immortalizing small town life through his ongoing commitment to illustrating the cover or The Saturday Evening Post, consequently showing the world his views on life through his works.

I was 12 when he died. I remember my Grandmother being deeply upset. It was then that I made the connection between the magazine covers that littered her coffee table and the wonderful artist behind them. An aspiring artist myself, I was fascinated by his technique.

As I got older I began to appreciate his work even more. I moved from admiring the technique of Rockwell’s work to the subject matter behind it. His portrayals resonated with me. The magic of Christmas…


Rockwell always brings me back to a time when Christmas was about family and neighbors. The one time of year when everyone was always nice to each other. When people Caroled, drank Eggnog and a gift was appreciated, be it a hand made pasta sculpture from a small child or a simple card. We weren’t valued by the extravagance of our gift.

Rockwell was most famous for his Christmas works but so many other of his recurring themes impacted me. The fun, and difficulties of being a child (and remember that his was a much simpler time…

young love
a boy and his dog
the runaway

He didn’t shy away from controversial subjects either and he took heat about it but remained unfazed…

He was once told that his depictions of racial relations would get him banned. He insisted to the Post that if he was censored he would walk away. He was allowed to continue. He was a man of conviction.

I was raised with his values of post-Depression, post-war frugality and conservatism. Waste not, want not was a daily mantra. My parents and grandparents fixed things when they broke, they didn’t throw them away. They “darned” socks with holes, they didn’t buy new ones. In a time of burgeoning rampant consumerism and pursuit of the next “new” thing, they were firmly planted in the “old times”; a simpler way of life that simply made sense. I truly loved that mentality, to this day I reject the “new is better” mindset.

Rockwell, during those times, stuck faithfully to the old ways, he continued too portray the America that he knew and likely sensed that he was to be a curator of them lest they be forgotten. When a horse drawn wagon rode alongside a new-fangled “car”. When children played in the street without fear of boogeymen. When people knew, respected and loved their neighbors.

I often muse that I was born in the wrong era. I would have loved to have grown up in Rockwell’s ’20’s.
Baseball was played for the love of the game, not massive contracts.
A time when men and women dressed in suits and dresses when going out in public.
A time when families ate dinner together every night.
A time when children played safely outside, in a neighborhood where people knew, cared about and supported each other.
A time when Doctor’s made House calls.
When civility and manners ruled the land.

I long for a return to these days but I know they will never return. That is why I have the Rockwell’s Coffee Table Books at the ready. As far as I’m concerned they have never been more relevant.

Hi…come here often?

If you follow me you may know that I endured a pretty hard kick in the emotional nether-regions on Sunday. The ill-advised “long-distance” relationship that I was involved with crashed and burned like the Hindenburg when I went on FB and saw that she had posted “in a relationship” with some random dude. I was shocked, hurt, confused and quite pissed off. I texted her and asked why I had to learn of this on F’ing FB and her only reply was “Don’t curse at me.” I then asked her if that’s all she had to say to me and I then found myself blocked on the phone, FB and my blog.

I was over it the next day. I don’t dwell. My takeaway is that I was most mad at the way I was treated. Looking back on the relationship I do know that it wasn’t going to end well. The only reason I allowed myself to have feelings for her was that there was a strong possibility of her moving here. Once I allowed myself to feel for her we developed a very powerful connection and in the ensuing months I can honestly say that I fell in love with her. I was actually happy for a while. But circumstances changed and it soon became clear that it wasn’t going to happen. But I continued to correspond and support her as if she was my girl. Hence the feeling of betrayal when I was unceremoniously dropped like a candy wrapper.

Every kick in the nuts should result in a learning experience and I indeed learned something. I need someone in my life. I so enjoyed the feelings I experienced during my fling. I felt desired. I felt wanted. I felt attractive. I felt needed. I want that again and I’m not going to find someone just sitting here on my ass. So I joined Match.com.

It was very intimidating for me. I haven’t been on a date since 1990. I haven’t had sex since Obama’s first term. I worry about being a poor candidate to attract someone. I’m not financially secure, not particularly healthy and don’t have my own place. Creating my profile was going to be a challenge.
Hi, I’m Bill. I’m 54, on dialysis, I’m bald, have one testicle and I live with my mother. I don’t have money but I’ll be happy to take you to McD’s and buy you something off of the dollar menu. By the way, the last time I dated Milli Vanilli was relevant. Can I wear my acid wash jeans? Seeking…well, ANYBODY

That was my first draft. I then decided that the one trait that never fails me is my stark honesty. So I went that avenue and this is what I came up with..
This is the most honest profile you will ever read. 2 years ago health issues cost me my job and marriage, ending with my moving in with my mother 2 years ago. I am rebuilding my health and my life. Yes, I live with my mother. Not in her basement, but in her attic and that’s better, right?I haven’t been on a date since 1990 so this is very new to me.I am a doting father of 4 amazing (grown) children.I enjoy volunteering. I’m charitable and active in several charities through my Masonic lodge. I am an aspiring author and an avid reader. I’m a great cook. I love animals. If the sun is out so am I, probably on my motorcycle. I love a good conversation and I have a great, if not occasionally inappropriate sense of humor. Life is a gift and I am trying to live mine to the fullest.I am looking for a companion to spend time with and have a few laughs and some great conversations. If it leads to something more then that would be great.I’m not financially stable yet but I’m not broke. If you aren’t about money and want to meet an old-fashioned, optimistic, funny, sarcastic, kind, grounded and nice guy then look no further.Life’s a garden. Dig it.

You saw the part about me living with my mother, right?

The first response (match) I got was from a 43 year old woman who lives fairly close to me. I was excited when I got a message from her.
“Hi, not looking for anything romantic, just trying to make friends and I like chill guys. We should hang out.”

Not exactly a swimming start. I replied to her.
How about that ? My first response to my new dating profile is from a woman who just wants to be friends…what guy wouldn’t love that?

She was amused by my response and we chatted a bit. I may meet my new friend who doesn’t find me attractive at all. I can never have enough friends, maybe she has a cute friend.

I’ve received a few likes, nothing too promising but I signed up for 6 expensive months so I’m going to be patient. One thing I know is that dating did, does and will continue to suck. It’s just reality.

There has to be someone out there who values honesty, wisdom and a warped sense of humor in a guy. Kindness, caring and integrity wrapped in a scarred but earthly package should have some appeal. I know I have a lot to offer someone, if they just scroll down.

We’ll see what happens. At least I can say I tried.

I’m fine, move on

Fine. Not the best word to hear, especially from a woman. In fact, I ran for the nearest bomb shelter whenever my ex (that word has a nice ring to it!) said “I’m fine.” See, Fine is actually an acronym for Fucked-up, Insecure, Neurotic and Emotional. But when I say it, I mean it. If only people would believe me. In particular, the damn social workers that keep asking me how I’m doing.

Today I met with the Maine Transplant Center. It is a second outlet for me to be listed in hopes of a donor. Despite having done every goddamn test imaginable with the exception of an Algebra question at the NH center, it is required that I go through the same orientation with Maine. Not the tests, but the financial, pharmaceutical, insurance, coordinator interview and of course social work.

This is the third time I’ve had to do this. I did it in 2011 before my first transplant. Nothing has changed since the first evaluation. I gave the Social Worker there nothing even then. If anything I’m more closed off now. Life has continued to deal me one setback after another, the biggest of course was losing my new kidney after only 5 years and putting me back at ground zero: broke, alone and in my mother’s fucking basement and I don’t want to discuss my damn feelings about it.

So when I met the Social Worker today, his questions were met with a resounding “I’m fine.”

It’s not his fault. He gave it a heluva effort. He did a good job and I liked him. He asked the right questions and I was happy to tell him all about my situation. I just didn’t display a satisfactory amount of emotion apparently. He pressed me on it and I gave him nothing. Finally he asked me to describe my coping mechanisms to him. I said “first I punch myself in the head and then I kick myself in the ass. Then I move on.” He laughed and asked me to try again. I put my arms on the table, leaned in and said,

“Sunday I got rejected and rolled over by a woman that I swore I was in love with. I was floored, flattened. I cried. I brooded all day, talked to no one, wrote a blog post about it and woke up Monday a new man. I processed it, sucked it up and shit it out. Done.”

I would best describe his expression as a hybrid of amused and annoyed. But he left it at that.

People don’t understand, I am an island. I am happy to have a support system, I just don’t use it. I am hyper self-aware. I know what’s wrong and right with me. No one can tell me anything about myself I don’t already know. This is what life has done to me and I’m actually fine with it. I will tell anyone my story if they want to hear it and I will be honest and open. But I don’t do it for validation and I don’t need help. I got this, I know how to handle it and if I don’t I will figure it out.

Why do people not understand me and my self-coping?

I’m not nearly as brilliant as Robin Williams but like him, I am a Sad Clown. I wear a smile to conceal iron teeth. I’m not ok but I’m not bad either. I’m not happy but I can be and until then I can fake it with the best of them. I’m unsure and anxious about my future but good luck getting me to say it aloud.

What can I say? I’m fine and it works for me. If you don’t get it then that is a “you” problem.