30 days

Well, today is 30 days since my surgery. The 30 day mark is big with transplants. It is usually known at this point how well the organ is working and if it is not adjustments are made and if it is working well then they give you a little more freedom. I have been going to the hospital twice a week (2 hours each way) and have been required to monitor every drop of fluid going in and out. It isn’t difficult, just tedious. Because I’m doing so well, I am down to once a week effective immediately and today I can stop monitoring my fluid. It really is going as well as can be possibly expected. I feel good about things.

I’ve been giving a lot of thought as to the direction of my blog now. With notable exceptions I have dedicated most of my posts to illness and the obstacles associated with. I think I’ve told my story about illness, now it is time to write about the joys of being healthy. Yes, even at 30 days out I already feel healthy. My head is clear, I have energy to work out, I’m recovering some muscle and putting on a couple of pounds (I need to, dialysis robbed me of all the muscle I had) and I’m remarkable impatient to start doing the rehab work in biking, hiking, lifting and hitting the heavy bag. I’m probably already pushing it but I can’t help it. Shit to do and places to go.

This whole thing has been a blur. Despite being of clear head I still haven’t completely grasped the magnitude of my good fortune and sheer luck (or divine intervention?) and the series of cosmic alignments that allowed it to happen. The realization that I am done with dialysis is the big one. The timing of this was nothing less than amazing, I was really suffering through dialysis and it was making my life miserable. I feel like I have a whole new level of freedom. I am giddy at the thought of riding Sturgis and the Americade next year. Free to ride, free to travel and no need to find a clinic nearby. The extension cord aspect of my life is over, at least for now. The fantasy of Kerouac’ing my way across these United States is now more reality than ever. I can take the RV and just go. This is not just a pipe dream, it is something I am going to do someday. And I’m going to take my time. Dreams have now become reality.

So I was thinking about new directions for the blog. I have always wanted to write about my work history. I feel that my experiences may help someone. I also want to write about marriage and family, raising children and of course divorce. In the process of forgiving both my wife and myself and letting go of a lot of anger I feel that my experiences as a husband and father may also help or at least be of interest to someone. I don’t think I have had a great life, I certainly wouldn’t call myself successful, but I have had some interesting experiences and I have lived some funny stories. The sky really is the limit.

I look forward to sharing the other side of me, the healthy and again optimistic me. Brace yourselves, none of you have ever dealt with me when I felt good. Parental guidance suggested. You’ve been warned.

The call

I can’t believe that after all this time I may have to rename my blog. From day one Superman can’t find a phone booth has primarily been about my struggles with Chronic illness and rebuilding my life after losing everything and moving in with my mother. In the process, I told my story, made some wonderful friends, and learned the stories of others. It was very therapeutic. But now I have to shift gears because
I GOT MY KIDNEY!

A week ago Sunday my daughter came to visit. My little baby has grown up and at 19 she has a job and a decent social life. She has also been under the umbrella of a terrible depression lately. I had been looking forward to her visiting me, I was eager to have one of our heart to hearts and hoped to glean some insight as to how to help her, if possible. She arrived early morning (she likes to squeeze as much out of our visits as possible) and I made her breakfast and we chatted over coffee. She seemed to be in a good mood. That made me happy.

The morning passed without event. With the exception of the excitement of having my daughter for the weekend, I felt like I always did. Like total and complete shit. Life had been hard lately, I had to struggle to even attempt to fake the upbeat and optimistic person I always strived to be. Dialysis was kicking my ass and despite only being on it for 3 years I experienced more than my share of complications. I had been sleepless, devoid of energy and uncharacteristically void of hope. I wasn’t thinking of giving up but I was as low as I’ve ever been.

After lunch the clouds cleared. The lake effect is powerful where I am and the clouds are always there in the morning and you never really know if they are going to burn off. My daughter asked to go out in the boat. We packed and went to the Marina. Once the dog and the cooler were in and we were ready to go. I turned the key.
Nothing. Shit, the battery was dead. I had left the boat uncovered and the hold containing the battery had flooded. The automatic pump had killed the battery. My mom went to flag down a mechanic and my daughter and I stayed in the boat. We sat there waiting, made small talk and played with the dog. My phone rang, the caller ID read my Transplant team’s number.
I knew that I had an appointment coming up and I was expecting it to be a robocall confirming. I picked up and heard a human breathing on the other end. So I said “What are you guys doing working on a Sunday?”
“Well”, the woman said, I was hoping to give you a kidney today”
I almost fell off of my seat.
I repeated the sentence verbatim, not sure if I meant to but that’s what I did. I looked at my daughter and her jaw was wide open. I put it on speaker. There was a bunch of qualifying questions she had to ask. Recent hospitalizations, any open sores, dental issues, distance from hospital etc. I answered all of them satisfactorily and she told me that it was between me and one other person but the odds were enough in my favor that I should get in my car and start driving right away. The hospital is 2 hours away. We bolted for the car.

The 2 hour ride, despite my driving like a complete and total asshole, still took two hours. Traffic was not thick but it was slow. But I got there within the time frame that I told them. Nobody in the ER was expecting me. For a really good hospital, the receptionist in the ER was less than professional. You would think that the sentence “I got a call from the transplant department, they have a kidney for me” would be self-explanatory but her face was similar to mine when faced with a math problem. Blank. I lost my temper. I’m not proud of it but I did. People in the ER waiting room got it but the staff didn’t. I made it clear that if I didn’t get the kidney because they didn’t know I was there that I was going to go apeshit. A triage nurse soon came to the rescue. He knew. Whew, that part is over.

I waited over an hour before someone came out and told me that I had beat the kidney there and it wouldn’t be much longer. Soon, a team of smiling people in scrubs came out and announced that the kidney was indeed mine and that I should come on in for surgical prep. Anesthesiologists, nurses and a team of support staff greeted me at the door. They actually clapped as I was rolled down the hallway. They were great.

Finally, I was wheeled into the operating room, still conscious, where I saw my surgeon. Dr. Dailey is a giant man, six foot seven at least. His eyes smiled through his mask as he prepared the kidney. I asked to see it. He held it up, it looked like a big chicken breast complete with the fatty tissue still on it. Very cool indeed. Ten minutes later I was under.

There is so much more to tell about this. It will be at least an entire post to go over it. As a tease, let me just say that the head of my Transplant team, a highly respected Doctor known internationally for his work in Transplant Science who never indulges in anything but concrete facts told me that my odds of finding this kidney was, and I quote, “in the millions.”

Superman has found his phone booth.

to be continued…

Before it’s too late

Often when I take a break from blogging it is because I can’t think of a topic. Sometimes it’s just laziness. Sometimes I just get busy, I’m pretty active for a guy with nothing to do. Then other times I just don’t know where to start.

Last week I suffered so many slaps upside the head that I just couldn’t sort my thoughts. It started with the death of a dear friend, then another old friend of the family passed, and then to top off the shit sandwich that was my weekend I found out that my best friend in the world and his young daughter had contracted the Covid-19 virus. I was floored both metaphorically and actually. I didn’t know where to begin.

The death of my friend, a elderly Freemason whose company I have enjoyed so often and so greatly was not a shock. He was elderly and in declining health. Quarantine issues made it difficult to visit him and he wintered in Florida but I had no excuse not to talk to him more frequently and I am feeling guilt even though I don’t feel that there was anything unsaid between us. It is the worst part of losing someone, wondering if you knew where you stood with them. It is THE reason that I endeavor to always leave someone as if I will never see them again, on the level (as we Masons say) and free of anger and resentment. He was my buddy, regardless of our age difference and I feel that I am a better person for having known him. I miss him terribly.

The family friend was less of a blow. He was 92 and passed peacefully. But he meant something to me as a memory of my childhood. My parents used to Square Dance (mock away I won’t resent you) and they met many solid friendships through it via conventions at Campgrounds every Summer and retreats in Winter. I can think of 5 or 6 families that I met on those occasions and the many lasting friendships with their children that I cherish now. Frank was one of the ones that stands out in my mind the most. A father of 5 awesome kids and a all-around wonderful family man, he represents an era gone by to me. I was so upset that I wasn’t able to go to his funeral. Not being able to attend funerals is one aspect of the Pandemic that is hard to reconcile.

The news that my best friend in the world contracted Covid absolutely floored me. The news may have numbed us with all of the constant talk and actual people can fade into just statistics but by now most of us know someone who has contracted it. Sadly, many of us have lost someone to it. We always hear about those people in the high-risk category. My friend is in it. He’s a big, strong man but he’s overweight. He has a heart condition. He is always tired and his immune system is vulnerable. When I heard the news, I won’t sugarcoat it, I had some very bad thoughts about worse case scenarios. And for his daughter, whom I love like my own daughter…her diagnosis scared the ever loving shit out of me. Fast-forward to today, everyone is on the mend. That is a huge relief. But I was scared.

If you are reading this, I want you to know that I care about you and I hope you never have to endure a weekend like I had last week. Tell those close to you how you feel. Make phone calls. Send emails. Don’t put yourself in a position where you know that you could have done more. We’re social creatures and we need each other more than ever.

Where it all began

As I begin the healing process after yet another visit to the Hospital I find myself motivated to blog more. I found the urge curious, then I realized that, for better or worse, the Hospital is where this blog began.

I was at Tufts Medical Boston in 2017 for severe edema. My transplant had failed suddenly in 2016 and I had been plagued with ailment after ailment for months. One of the symptoms was retaining fluid in my legs. After retaining so much fluid in my legs that I couldn’t get my pants or a shoe on. My blood pressure was out of control and I was on the verge of heart failure. I would find later that they removed 30 pounds of fluid from me in 5 days. You read that right, 30 pounds.

When I had my transplant in 2011 I left the hospital like the Tasmanian Devil. I was back to work in 31 days, which was unheard of. As soon as I was able I hiked, biked, screwed, climbed, walked and hit the gym regularly. I had my health for the first time since I began failing badly in my 30’s. The expectation I was given was at least 15-20 years of health before maybe needing another Kidney. When it failed after 5 I was livid. I was mad at the world, mad at my Dr. for not telling me that my particular disease was known to stay in the body and attack the new organ. I felt betrayed, let down and without hope. I was miserable.

My Dr. came in on my third day and asked me if I had any interest in talking to a team of interns. His concern was that the current batch of students were adept at medications and protocols but lacked good ol’ bedside manner. In short, he felt their people skills sucked. He felt that my story would be a good one to share. I wasn’t going anywhere so I said yes. As he was leaving he turned to me and said, “Don’t just spill it, let them pull it out of you.”

Several hours later 5 interns entered my room. They pulled chairs and gathered around me. They asked me several questions and, while following my Doc’s advice, I let them pull it out of me. Over the course of an hour they heard the tale of Bill. Bankruptcy, foreclosure, lost job, divorce pending, behind on rent and a insidious and debilitating disease. One of them actually wiped tears away from her face. I don’t need to be told how it went, they left changed by the experience.

I sat back in my bed that night and it occurred to me that maybe others may benefit from the shitshow that is my life. I knew that one platform was a blog. I had blogged before to mixed results. I wasn’t consistent in my theme or my frequency and I let it die. But this time I was inspired. I wanted to tell my story anonymously to the world just to get it out and relieve the weight on my shoulders. Ok, I asked myself, what is the name going to be? Immediately I recalled an argument I had once had with my wife in which she was haranguing me to be honest and open with our youngish children about the severity of my disease. She was mad that I sucked it up and faked how badly I felt in front of them. That was what I did, it kept them happy. I also hid it from my employer as long as I could for obvious reasons. As the argument peaked she yelled at me, “OK Superman I guess you’re fucking bulletproof!” and stormed out of the room. It hit me.

“Superman can’t find a Phone Booth” was born.

I knew that it was a dated reference. Many of my readers have never seen a phone booth or the old reruns of Clark Kent running to a phone booth and changing into his suit and saving the day. It was a perfect metaphor for how I felt. In the face of evil, in this case disease, I was running out of ways (phone booths) to find a suit of strength to combat my disease.

I swore that I would pull no punches. It would be what my early readers (some of you are still around and I love you for it) would describe as raw, visceral, inspiring and brutally honest. I told my story. One reader commented that it was the best blog she had ever read and posted about it.

There was a time recently that I thought that I was done telling my story, that it had run its course. But now I know that Superman is back. I managed to remove that Kryptonite necklace hanging around my neck. I found a phone booth and my suit is back from the dry cleaner.

Expect some more raw, some more visceral, some more brutal honesty as I continue to tell the tale of the shitshow that I call my life.

Spoons

“Got any spoons in the drawer today?”
“1 or 2”, Adam sipped his Chinese Tea, his chubby face forcing a smile. “I need to be careful that I don’t use them all today.”
“Gotcha.” It was a familiar conversation between him and me. Once a month we’d get together at the Asian buffet and catch up over lunch. Each time I saw him I hoped that he would look better, but it was not to be.

Spoons? you ask? I am speaking of the “Spoon Theory”, the metaphor chronically ill people use to discuss their energy level.

  • A person has roughly the same amount of energy each day.
  • Each unit of energy is represented by a spoon.
  • Healthy people have more spoons (energy) than those with an illness that causes chronic fatigue.
  • Some activities cost more spoons than others.

To my friends with a chronic illness, you know what I’m talking about. If you don’t, then I hope you never do. Adam was all about the Spoons. If there ever was a guy that needed more, it was him.

I first saw Adam at a Masonic District meeting. He was sitting in the back corner of the room, listening intently. I was taken back by his appearance. He was very overweight, his clothes were too tight. His pantleg barely covered his absurdly swollen ankles. I was 90% sure that it was due to medications, likely steroids. I inquired about him to a fellow brother and he confirmed my suspicions.
There was a cocktail hour after the meeting and I waited patiently for a chance to introduce myself. He had a constant flow of people coming over to him and talk but I found my opening and went over to his table. sat down and said hi.
He would become one of my best friends.

Adam lived at home. 2 streets over from me. He lived with his parents after a series of heartbreaks rocked his world. A Cancer diagnosis at age 30. A recovery against a survival rate of 15% two years later. A divorce that cost him his house because his wife couldn’t handle him being sick. Visitation with his son every other weekend, which was tough for him because he hated his young son seeing how sick he was.
But he pushed on, despite the lack of spoons. He always had that smile.

In the time that I knew Adam, I learned volumes about the value of not complaining. Often, people make the mistake of greeting someone with a “how are you?”. Some people feel inclined to actually tell you, not recognizing it as a mere formality. Adam would always smile and say “good”. Even when we all knew he wasn’t. In the course of the 6 years that I knew him, he had 2 near-fatal infections, a stroke, a pacemaker installed, 2 new knees and a hip. Not to mention 2 other lengthy stays in the hospital for fatigue, one of which almost killed him. It was exhausting to be his friend because we worried about him so often. But it’s a labor I will never write off as unworthy, for he was as good a friend as any, and his ability to ask how everyone else is doing when he was clearly suffering just exemplified his kind and selfless nature. Truth be told, he didn’t like to talk about his health. Not unlike most Chronically ill people, he hated being the “sick guy” and wanted to be treated as “normal”. I’ve been there, I often longed for someone to greet me just once without saying “how are you feeling?”.
That’s why we limited most of our conversations about our respective help to spoon talk. It became our thing.

Adam never truly recovered from the Cancer. In medicine, for every action there is a reaction. For every cure, there is a side effect and a new set of symptoms. And another pill. The treatments are what ultimately killed him.
10 years after he was “cured”, he was dead. Out of spoons at 40 years young.

I miss my good friend. I miss his kindness. His self-deprecating jokes. His drive to do something, anything, every day just to feel normal inspires me. His memory serves to make me a better man, one that thinks of others before self. See, therein lies the secret and once you learn it you can’t unlearn it.

When you are thinking and acting on someone else’s needs, your own problems disappear. Even if for only a moment.

I wonder if he knows that every time I go to the drawer for a spoon, I think of him.

the Caretaker

My mom is 75. Up until this year she worked. Not because she needs to, she just likes to be busy. Working with Special Needs children here in town gave her so much satisfaction. But, with Covid being what it is, and my health (I’m in the most vulnerable category there is), she took a leave of absence.
I hate that she had to do that, knowing that she did it for me.

She has been relentlessly puttering about the house looking for something to clean. Something to sew. Projects to complete. It’s confusing to me because she has a RV ready to go in the driveway, a boyfriend that is always telling her that she should quit working (she does not need the money) and travel with him, and she has me to watch her house should she choose to go someplace.

A month in and she hasn’t spent any additional time with her boyfriend and she has made zero effort to make any plans whatsoever. The other day I asked her about it.
“What, are you trying to get rid of me?”, she asked.
I explained to her that I just want her to enjoy her retirement, to take advantage of not having financial constraints, to do all of the things that I long to but can’t due to the rigorous demands of my dialysis schedule. We talked about it and she was uncharacteristically quiet. I got frustrated and asked her why again. She spun around with a face on that I haven’t seen in years.
“Bill, do you remember what happened 2 years ago?” You would be dead right now if I hadn’t been here!” She was on the edge of tears.

There it is. The truth comes out, and an inconvenient one at that. Despite all efforts to the contrary, beneath it all I am a burden to her.

My mother is a Caretaker. She cared for both of her parents during their decline and she, with little help from the Teamsters, VA and Medicare, cared for my father as he succumbed to Parkinson’s over an eight year period. It took almost everything out of her. She put her life on hold for him. Once he passed, I had hoped that her caretaking days are over. In her eyes, clearly they are not.

I can see why she feels this way. You never stop being a parent, no matter how old your children are. I can’t imagine how she felt to come upstairs to my loft, after calling my name several times with no answer, to find me on the floor unconscious. Does it matter that I was 53 years old at the time? No, she was terrified and thought her only child was dead. It changed her, she is burdened with walking around with that image in her head. And she’s afraid that if she goes away it could happen again.

I’m smarter now about being honest about my health. I tried to assure her that I know enough to call 911 if I am in trouble. But she is standing firm. It is what I love and hate about her.

I want to be so many things in life. A burden is not one of them. I wish I could erase that whole ordeal from her mind. But I can’t. It happened and in her eyes she is permanently vigilant in the event that it will again.

I’m forever the burden, she’s forever the caretaker. That’s what being a parent is. If you do it right, it never ends no matter how old they are.

Ellie

We weren’t close. I’m sad to admit it. But she’s family.

My father has 2 sisters, Margie and Ellie. Margie had 6 kids and survived an abusive sonofabitch of a husband. He died and she met a man who would make up for all of the abuse and more. Sonny. He did everything right by her until he died ten years ago. Margie recently became unable to care for herself and she was forced to move to a nursing home.

Ellie was a far less accomplished woman. To be honest, she led a unaccomplished life. Born with Epilepsy she, by all accounts, used her illness as a crutch. She barely graduated from High School. She never worked a day in her life. She lived with my Grandfather and cared for him (he was sick with Emphysema from my earliest memory) until his death in 1983.

I worked at the local Supermarket through High School. Ellie and my grandfather lived on “the Pond”, a section of town named after an actual Pond, Martin’s Pond, a huge area of town notorious for lower income but hearty families. Many of my friends lived there, “Ponderonians” as it were. My kind of people. The entrance to “the Pond” was a street off of the main road that started as a long and steep hill. Ellie and Gramps lived on the very bottom where it flattened out. Gramps had a view of the water on one end of the house and the street on the other. Confined to an oxygen tank, he inexplicably chose the street view and sat in the window year round. He was notorious for his omnipresent face in the window. Ellie’s notoriety was to be seen slowly plugging up the hill with her obvious (and unexplained) limp as she pulled her makeshift shopping cart with her. She spoke and dressed poorly. She was the focus of a good bit of mockery among my Supermarket colleagues. Kids can be cruel and it wasn’t until they learned that she was my Aunt that they let up a bit, in my presence at least.I’d like to think that I wasn’t ashamed of her but I think I was. In the back of my head, however, I always reminded myself that she was family and you never turn your back on family.

It was easy to underestimate Ellie. She was an unremarkable person. My father didn’t care for her, his own sister. He had no respect for her. He thought that she could have done so much more and he believed that she hid behind her illness. According to my cousin Mike, who I am the closest to, her Epilepsy wasn’t a constant nuisance to her, her episodes were few and far between and there was no reason she couldn’t have worked, or volunteered or done something other than sit and watch soap opera’s.

I lost touch with her for a lot of years. We reconnected a little last year at the Nursing home. She ended up in the same facility as Margie. Margie is lucid and strong, Ellie has dementia. Catching up was not to be with her, she was on a loop in which she asked me the same questions every ten minutes. She was cheerful at least.

My relationship with Ellie wasn’t complex. But it has been a secret source of shame for me for many years. I could have been nicer to her, I could have kept touch with her. She was always nice to me.

It’s too late now. She and Margie contracted the CoronaVirus last week along with 59 other patients in the home. Margie is hanging on.

Ellie died yesterday.

morning coffee

A vision of loveliness in a t-shirt and panties, in her bare feet she dances across the kitchen to a song only she can hear. At the sink, she fixes her coffee that she stares out the window, her morning ritual, marveling at the birds as they frantically dart in and around the feeder. The dog brushes up against her and she stoops down to pat him, her affection emanates from her as she talks to him. She knows he doesn’t understand but he hangs on the nuance of her every kind word.
She sees him come in, and as she stands she tosses her hair back from her face, smiles at him and returns her gaze to the window.
He approaches her and wraps his arms around her waist. She leans back, trusting that he won’t let her fall. He buries his face in her neck, savoring the smell of her hair.
“You’re beautiful”, he whispers.
“Stop it, I’m a mess”, she whispers.
“You’re the most beautiful thing I’ve ever seen.”
She closes her eyes and savors the moment.

He fixes a coffee and settles in. The newspaper on the table before him fails to catch his interest. His gaze remains on her as she putters about her morning routine. After all the years he is fascinated by her. She walks weightlessly. Her smile illuminates the room. She lights up at the smallest of things.
How does her heart even fit in that tiny body?
“You’re staring at me. Stop it.”
“You’re not even looking, how do you know that?”
“I can feel it, silly.”
He returned his attention to his paper. He pretended to read it but his mind was elsewhere. He knew his face was betraying him. How do I tell her?
As if reading his mind, she leans in and kisses him on the head.
“What are you thinking about?” she asked him in the sweetest of tones.
“Oh, nothing.” Now is not the time, he told himself.
She sat down at the table across from him and sipped her coffee. She looked up and caught his gaze.
“You’re staring again.”
“Sorry.”
She got up and left the room. He returned his focus to the newspaper. Moments later he looked up and saw her in the doorway, a single tear slowly made its way down her face. He realized that she had gone into the den. And that he had failed to close the browser.
“When were you going to tell me that it’s back?”
His stomach sank. When I can wrap my head around another man loving you, he thought.
He doubted he could ever do that, certainly not in the six weeks that he had left.
He motioned for her to come to him. Instead, she cupped her face in her hands, turned and left the room.



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.

“Playing the card”

It is truly a great thing to meet a blogger that you become actual friends with outside of the blogosphere and its routine of merely reading, liking and commenting on posts. I have such a friendship and we had breakfast Sunday morning.

Much of the conversation revolved around our health. She is a recent Cancer patient, note that I did not say “Survivor” and she is well versed on my situation so it was to be expected that our health challenges would be a part of the conversation. After a hell of an ordeal, she looks great. Healthy, fit and her attitude and demeanor are positive. Me, I like to think that I am the same. I live my life in a way that I hope nobody will say “Hey, that guy looks sick.” It was like talking to a female version of me sitting across the table. Like I said, refreshing.

It’s something that I have blogged frequently about, the inevitable spiral of being chronically ill to the point where you become the “Sick person.” The unfortunate reality when the first thing someone says when they see you is to ask how you are feeling. It is not that it isn’t appreciated, it certainly is, but it tends to be your identity above all else that you are, offer, or aspire to be. It can become your identity. If you let it. She and I both refuse to let it.

But then the conversation went in a related but refreshing direction when she uttered a phrase that is not new or original, but timely as hell and needed to be said.

“Everyone has a card to play.”

It really struck a chord with me and we talked about it at length. The words “survivor”, “sufferer” are an extrapolation of the victimhood culture we live in. People fall back on identity to define themselves, inject their ordeals into unrelated conversations and situations to elicit a response, sympathetic of otherwise, or in the worst case scenario, to obtain an advantage or alter an outcome. My friend and I are both tired of it and refuse to “play our card”. We don’t care if you are a minority, a woman in a man’s world, Gay, trans, poor, or misunderstood. Don’t let victimhood be your defining trait. Just live your life.

Everyone has a burden to bear. That is the origin of the famous saying,
“Be kind, for everyone you meet is fighting a hard battle.”
But the true warriors don’t announce their burden to the world, they generally go about their business the best they are able. Yet many insist on letting their burden define them.

As we wrapped up, we inadvertently revealed that we both derive great pleasure helping and supporting others It serves several purposes; It is our obligation as human beings to support each other, it takes your mind off of your own struggles, and most importantly, it reminds us that everyone has something to deal with.

Here’s to being strong. Here’s to taking advantage of opportunities and not problems. Here’s to standing tall. Here’s to the day when equality is assumed and not demanded. Here’s to the end of the victim mentality. We all have so much to offer the world if we shed those shackles.

Most of the bloggers I follow have some kind of Chronic Illness. NONE of them complain. They just want to be normal.

What is normal? I suppose that is a topic for another day.