chronic illness – The Tao of Bill

The epileptic Carp

As they entered the Hospital Foyer, Bill made one last attempt to get his manager to leave him. He was having none of it.

The check-in process was fairly quick. It was early afternoon, the ER wasn’t busy. Being in an affluent community didn’t hurt as well. Bill’s home hospital was often flooded with drunks and victims of violent crimes. There wasn’t a lot of that in this sleepy Massachusetts town, he mused. Within 15 minutes Bill was seen by the ER physician. He was asked a bunch of questions about his health history. They did a run-up of blood work. The ER doctor was clueless regarding the episode. Bill was not surprised, no one else had ever figured out why he had these attacks either. The Doctor scribbled on his board, muttered something to his attending Nurse and went on to another patient. Bill was left to make small talk with his GM until someone came back.

To his encouragement, his manager didn’t talk about the events of the previous hours. He instead shifted gears to talking about some of the business matters that he wanted to review in the now cancelled meeting. It was a relaxed conversation and they actually accomplished something. Before long the ER Doctor poked his head in.
“Are you aware…” time stopped for Bill, he knew exactly what was coming…3,2,1 BOOM
“that you have serious kidney failure?” Bill high-fived himself mentally, just as he had called it.
“Yes, I am aware” he replied as he looked over at the furrowed brow of his boss.
“Are you being actively treated for it”? the doctor asked.
“Not as actively as I should, perhaps” Bill replied. “But here’s the thing, is it related to why I’m here?”
“Not that I know of” he replied. “I can’t identify the source of your episode.”
“Then we’re done here unless you have some suggestions.”
“See your Nephrologist. If you give me his contact information I’ll have your labs forwarded.”
He gave him what he asked for and they left.

It was a quiet car ride back to the office. Bill decided to just get it over with.
“I have Kidney Disease” he offered. “Now you know.”
“Well something has to be wrong with you, you were flopping around on the conference room floor like an epileptic Carp.”
They shared a laugh. Then Bill asked, “Does it change anything?”
“Like what, you mean your employment status?”
“No.” Bill rephrased his question. “Is this something that I should have told you when you hired me?”
His manager didn’t flinch. “That’s why we have health insurance, you dumbass. How long have you had it?”
“Since I was a teenager. It’s unpredictable in its progression. I think it’s getting worse.”
“Do you think you should have told me on the interview?”
Bill stroked his goatee, stalling.
“Yes and no. It really hasn’t affected my work that I know of. I don’t have a crystal ball so I don’t think about the what-if’s. When I met you, I wanted you to see the man for the job, not some sick guy. Does that make sense?”
His manager nodded. “So now we know,” he said. They drove the rest of the way in relative silence. They passed through the security gate and as a courtesy he was dropped off at the door. It was 4:30. Bill was thankful and he got out with the intention of going in, grabbing his bag and calling it a day. As he nodded a thank you for the ride his manager asked,
“Where does stress fit into all of this, you know, with the kidneys?”
“I don’t think it helps, I know that much. Why?”
“Because you’re wrapped tighter than a convenience store sandwich. You try to do too much. You’re the first one in, last one out. I’m not asking for that. Take it easy on yourself. You’re getting the job done.”
“Thanks, but you might as well tell water not to be wet. It’s how I’m wired.”
“No, that’s how Superman is wired. Your name is Bill, not Clark. Smarten up.” With that, he put the car in gear and drove to his reserved spot.

the End of the facade

Bill Marshall had just collapsed on the conference room floor in front of the entire management team. His co-workers swarmed around him anxiously barking questions. Are you alright? Where does it hurt? Can I get you anything? Can you talk? Bill wanted to answer all of them but the pain in his side was excruciating and he couldn’t get the words out. The muscles below his rib cage seized, failed to relinquish their grip. He couldn’t breathe. He clenched his teeth and tried to draw breath. His GM reached down and sat him in an upright position against the wall and handed him a bottle of water. Bill leaned forward, grabbing his ankles, trying to stretch the spasm away. Finally, the pain subsided. He sat against the wall, sipped the water and tried to regain his composure. He looked up, the entire room was staring at him.
“It’s all over,” Bill said. “Let’s continue.”
“Are you nuts?” his GM said. “You’re going to the hospital.”
Someone in the background offered to call an Ambulance. Bill resisted, insisting that it was over and he was fine.
“Have you had that happen before?” the controller asked.
“Not like that.” He lied. The truth was that he had. Not as bad but similar. He had mentioned them to his Doctor and they could find no explanation. Just one more thing to deal with.

“Well, we’re driving you to the hospital then. I’m not giving you a choice.”
Bill dropped his shoulders in defeat as he was pulled upright. He allowed his coworkers to take his arms as they ascended the stairs, walked outside, and got him into a waiting van.

By the time they had reached the local hospital, Bill felt fine. He didn’t want to go in. He had been the local hospital route before. It was always the same thing, they would run some tests and send them to his own doctor. Nothing would be accomplished except the waste of a lot of time. A doctor would come out and ask if he knew that he had Kidney issues. He was aware.

There was a bigger picture here shaping up. Bill’s GM was going in with him. When he hears the words “Kidney Disease” from the Doctor, it will be the first time his company learns that he is sick. Two hours ago, he was bulletproof. That façade was about to crumble. It was his biggest fear, that his coworkers will now see him as the sick guy. Bill had done an admirable job of denying, faking and downplaying his illness to his family, friends and employers for a hell of a long time. Now his Achilles Heel is exposed.

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.

Right place, right time concluded

You can find part 1 here.

There was only one person in the waiting room besides myself, a woman sitting patiently in the corner. This particular waiting room is not a very chatty one, it is mostly populated by very sick people. It was not lost on me when I was under their care that I was one of the healthier ones there, I was only getting shots and infusions for anemia and other renal-related issues. Most people in there were getting chemo. I respected them and consequently felt a sense of reverence towards the woman in the corner. I took out my phone and played around for a while.

“Do I know you?” she asked. Startled, I looked up from my phone. I wanted to give my usual response to that question and say “Do you watch porn?” but I restrained myself.
“I don’t know. Maybe.” I replied
We talked for a few minutes and it was determined that she didn’t know me. It was at that time that Lauren poked her head out the door and I politely excused myself and went to talk to her.

Lauren brought all of the ladies of the center out one at a time. One by one they asked me how I was doing and what I had been up to. I gave them all the Readers Digest version and I kept it very positive, I hate to burden people with my problems. I touched on dialysis, some of the issues I have dealt with and my possibility of transplant in my most self-deprecating, humorous, and matter of fact manner. One by one they excused themselves and went back to work. Except Lauren. She stayed. She wanted me to tell her the truth. So I did. But I still did so in a positive way. Then she had to go back to work so we said our goodbyes. I jokingly asked her if she was still married. She laughed, wished me well and then gave me my fourth huge hug of the day. I turned to leave and as I did my sole companion in the waiting room said something to me. I don’t remember what but it was enough for me to go over and sit down.

What I remember was that she commented on what she saw and heard. She was taken back by my positivity and remarked that it was just what she needed that day. I decided that it was a good idea to stick around and talk to this very nice woman.

She told me her story and I told her mine. She was there for treatment for Rheumatoid arthritis. I didn’t have to tell her that I knew how bad that can be. I listened intently as she told me about her RA and how it has affected her life. She was very brave and I knew immediately that like most with a chronic illness she was a fighter. But something in the way she was talking told me that she was wearing thin with it and like most of us, she was looking for a good reason to keep fighting. As the conversation continued I realized that I was right. She actually said it, that she needs a reason to go on.

I don’t consider myself the best listener. In theory I am, I want to hear what people have to say but my problem is that I want to interject, offer advice. All because I want to help. But in this case I just listened to her. She clearly needed to talk to someone. I was momentarily taken back by the similarities in our situation. One big one…give me a reason to feel optimistic. My take on this is simple, looking for a reason to go on isn’t merely to counteract those dark moments, which all people with chronic illness experience, it is much more, it is looking for something that is stronger than the nagging urge to give up.

When it was my turn to speak I seized upon one thing that she spoke of that piqued my interest. Purpose.
“Ok. You noticed how the nurses all knew my situation and commented how well I’m doing with everything? That’s not an accident. It’s my purpose, my role in life. To be the one that makes that caregiver a break from the sad and miserable people. To be the one that shows that attitude matters. And do you know what else, it’s all an act sometimes.”
“It is?”
“Sure, often I feel like absolute crap but I tell ’em that I’m doing great because that’s what they want to hear. It helps people. Some know better but they respect what I’m trying to accomplish. It’s my purpose in this world, unfortunately not a paid position, to offset the negativity. It’s a role I fell into but once I did I realized that it was something that inspires others into being more positive.
“It’s hard sometimes” she said.
“Believe me, I know.”
“Well, I find you inspirational” she said.
“Well, I find you inspirational as well.”

At that time the door opened and she was called in for her treatment.
“Well, it was nice talking to you” I said. And it was at that time that I received my fourth big hug of the day.

Here’s the rub. I shouldn’t have even been there that day. I was there the day before to do my lab work and I hadn’t noticed the caveat about 12 hours fasting before doing it so I dropped it off and went home. So is it a coincidence or destiny that I would come back, foul mood and all, to see Nichole who wasn’t there the day before; Lauren that didn’t poke her head in while I was there; and meet my new friend?

I don’t believe in coincidences and I don’t believe in destiny. I do believe that sometimes things happen for a reason. I got as much out of talking to her as I think she got from talking to me. It was a very good use of my time.

Be open to opportunities to talk with someone who may be down.
Be nice.
Find your purpose.
When you find it…go with it.

Right place, right time

Where were you today?
Me?
Amazingly, inexplicably and entirely uncoincidentally I was again in the exact right place at the exact right time.

Today started as most days. My alarm went off at 445 and I laid in bed, enjoying the snooze cycle that grants me a 9 minute reprieve from the agony of getting up. In order to make it to Dialysis on time I have to be out of the house by 5:10. Of course I got out of bed at the last minute and I didn’t know that it snowed the night before. After removing the snow and ice I was running behind. I was in a bad mood.

As it turned out the clinic was running behind and it didn’t matter that I was late.

It was a miserable treatment. The needles hurt like hell from the minute they went in. The machines seemed to be beeping and pinging more than usual and I was really annoyed. Amazingly I managed to fall asleep but after a mere hour I woke up in agony. I had flinched (spasmed) in my sleep and one of the needles infiltrated my fistula. In laymen’s terms the needle punctured the wall of my vein. It’s excruciating. And it also meant the end of the treatment. They had to take me off so that I could fight another day. I left 2 hours early with a sore arm and a big blood stain on my expensive new sweat pants.

As I got into my truck, fuming, I remembered that I had lab work to do at the hospital. It was up the street so I decided, despite my mood that I needed to get it out of the way. I walked into the hospital, went to the lab and went to the window to make sure that they had my order. They did and instructed me to wait so I sat down. It was then that the door to the lab opened and it was Nicole.

Nicole the lab tech is a ball of beautiful, charming and sweet stuffed into a tiny 5 foot 1 inch package. I haven’t seen her since I started dialysis (the clinic does most of my lab work now) and I was really happy to see her. As it turns out she was happier to see me as she gave me a huge hug.

“Oh my god, we were just talking about you the other day!” she said.
“Anything good?” I replied.
“Only that we were hoping you were doing well. We miss your humor around here.”

She completed filling the 8 (yes, 8) vials of blood for the labwork, walked me to the door and gave me another hug. At that point my day had transformed into a good one.

Then it got better. Lauren from the infusion center walked in.

Lauren was once the topic of an entire blog. Gorgeous, smart, funny…and married. That little detail always left me unfazed and when I was getting my infusions I shamelessly flirted with her. She didn’t mind, in fact I think she enjoyed it. Here she was, discussing a patient with Nicole. As she turned to walk out she instantly recognized me. I was awarded my third huge hug of the day.
“I can’t believe you remember me” I said.
“What? Forget you? Never.”
“Is that a good thing?” I inquired.
“Everyone always asks about you.”
“Can I go in and say hi?”
“Sure. I have to go take care of something so wait in the waiting area and I’ll come out when I can to get you.”

I followed her to the infusion center and patiently waited.

to be continued…

the lessons of time

It is not only a new year but also a entirely new decade. As I mark the halfway point of my 5th decade on this glorious spinning ball we call earth I have to say that the last ten years have easily been my most tumultuous and unpredictable to date. It is said that it is better to forget the incident and focus on the lesson. I need to do just that. If I was to take anything away from the last ten years, it is that I have learned a lot of lessons.

In 2010 it was determined that I would need a Kidney Transplant. Without it, dialysis would be my only option. One that I absolutely hated. The lesson was that, despite my remarkable skills of denial and putting on a brave face, it was time to take my health seriously.

2010 also saw the culmination of multiple bad financial decisions and living beyond my means in the foreclosure on my house and a bankruptcy. Despite finally landing a great job in 2008 it was too late to stop the inevitable and my family dragged ourselves to our new home, a small 3 bedroom apt where the rent was as much as our previous mortgage and we were actually tripping over each other. The lessons were many. I learned to curb my spending. I learned to downsize. And as we banged around in close quarters I learned that the smaller the space, the closer the family and as a family we achieved some much needed closeness.

In 2011 a co-worker and friend offered to give me a kidney. Her selfless offer caused a chain reaction at my company culminating in a fundraiser for my medical expenses. I felt like the luckiest man alive and I was blessed with a huge support system. I received my transplant in December. I was grateful and empowered. The lessons were many. I learned that a blessing can come from any source and to be open to it and be grateful. I learned that people are good and plentiful. I also learned that there is a catch to everything. My GM, who coordinated the fundraiser for me was going to play that card to manipulate and attempt to compromise me for years to come.

In 2013 I lost my father to Parkinson’s. It hit me hard to say the least. I still wonder if he died knowing how much I appreciated and loved him. The lesson, and there are many, was to tell the people in my life how I feel about them. I have committed to always leave people as if I am never going to see them again. Regrets are not part of my current game plan.

2013 also was the year I joined the wonderful fraternity of Freemasonry. I found a passion to pay forward my recent gift of a Kidney Transplant and Freemasonry allowed me access to great men who do great deeds. My commitment to be a better man each day than I was before has forever changed my life. The lessons are many. Selflessness, charity without expectation of recognition, love of community and the confirmation that there are a lot of good people in the world, you just have to know where to look.

Professionally, it was a wonderful decade. In 2008 I had fallen into the job that would not only introduce me to a lifesaving donor, but I found my niche in my career. The company groomed me for a couple of years and then gave me a department to build and I can say, without hubris that I knocked it out of the park. My background and personality served me well in our business model and I became a crucial “go-to” team player valued by our customer base and a frequent resource and problem-solver. Every day was challenging and different and I found myself in a position to help people. The lessons were many, chief among them was to listen to those around you and help them whenever possible. Also, be the worker and coworker that when you take a sick day, people miss you.

I would say that 2016 was the worst year of the decade. It began when my kidney failed suddenly in February. I was floored. Upon receiving my transplant I was a new man. I began my recovery immediately and I committed myself to keeping the kidney for at least the 15 years I was told it would last. I worked out hard. I did P90X, I biked and hiked. I took care of myself and dropped weight. When it suddenly failed after only five years, I was angry like never before. Where were my 15 years? Why did I have to find out on my own that my disease was the only kidney disease to return and infect the new organ? I would later deduce the lesson. You never know what the future holds so get out there and live now. If the Dr.’s had told me that I may lose it in 5 years would I have achieved all that I had? No, if I had sat around waiting for the shoe to drop I would never have climbed those mountains and savored the view.

In 2017 the bottom really fell out. My company closed, taking my dream job with it. My health deteriorated to the point that I couldn’t keep another job. When the job was gone so was the money and that was when my marriage officially collapsed. It was inevitable, we had been strangers for years but it hurt nonetheless. I suppose you know the rest. I moved in with my mother. I applied for Social Security Disability. I was denied. I went on dialysis and I am to this day. That’s the bad.

But here’s the good. I started this blog and if you are reading right now then I made a good decision. I also focused on creating and maintaining solid relationships with my children. Today, we are strong and their love sustains me. I also committed to getting along with my ex. I have not to this day experienced the closure, the explanation for the rejection many years ago and the giant wall that formed between us but I remained friendly with her for the children, for us and for the sake of tranquility. I would like to think that I am setting a good example for the kids on how to be an adult.

2019 served as a year of tying things together and trying to formulate a plan going forward. It was a year of many setbacks and achievements. After nearly dying in September 2018 I emerged from a medically induced coma with a “bucket list” mentality. I focused more on what I could do and less on what I couldn’t and in the process found that I could do a lot of things my detractors said I couldn’t. One of them was buying a motorcycle. Everyone said no, as had my wife and family for many years. But it was in my blood and as an homage to my father I was on two wheels again. The freedom and love of the open road has changed my life and, second to my children, is a thing that keeps me going on those dark sleepless nights when the pain is so bad that I consider the darkest of thoughts…ending it.

My greatest achievements of the 2019 was the transformation of my entire attitude. I like who I am. Finally.

It is true that a man has to hit rock bottom, with nowhere to look and go but up, before he truly discovers what is truly important. Brutal self-examination led to self-improvement. Physical challenges awakened the fighter in me. Having nothing to lose empowered me to rise from the ashes and shine my light instead of lurking in the shadows. It was then the lessons became clear.

For every high there is a low.
People do not suck.
Life is to be lived not viewed out a window from a recliner.
The words “no” and “can’t” are to be treated as a personal challenge. Sometimes we all need help and that’s when we discover who our friends are. Pain is temporary while regret is forever.
Be charitable to a flaw with your time if not your wallet.
Only look down on a man if you are helping him up.
Be nice. If you can’t do that then be quiet.
Don’t ever let someone tell you what you can’t do.
Make every day count as if it were your last.

In closing, I hope to be around long enough to do another one of these ten years from now.

Happy New Year.

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…

Do it now

Tuesday the text came through from Charlie. Charlie is the guy I bought my motorcycle from and we became friends and riding buddies.

We had a cancellation for Lake George this weekend, you in? We leave Thursday.

The Lake George Trip! He had mentioned this to me. 4 days of riding motorcycles and a huge car show. I was excited. Then I thought about it. I came up with about 50 reasons why I should say no. Some were legitimate, like missing 2 dialysis sessions was a big one. I texted him back and told him I couldn’t make it.

Then I thought about it. I didn’t even try to see if I could make it work. Had I even tried to change my schedule at dialysis or try to schedule an appt in NY? Apparently a year of Dr’s Appointments and a rigorous dialysis schedule had almost stolen my spirit. Almost. I texted Charlie back and told him that I needed until the next afternoon to decide.

The next morning I went to my clinic and sat down with the nurse manager Karen and told her that I had an opportunity to do a real bucket list thing and asked for her help. Within minutes it was agreed that I would come in the next morning at 6 am (as opposed to noon), skip my Saturday treatment and do Monday and Tuesday when I get back. Bada Bing Bada Boom. I was all set. I called Charlie and told him that I’m in. He was happy.

That afternoon I packed everything I would need for the trip. Rain gear, clothes, tools and snacks were loaded onto the bike. I had already polished her and topped off the oil. She was ready to go.

As luck would have it I didn’t sleep for a minute that night. I went to dialysis at 5:45 hoping I would catch a nap there. No such luck. When I left at 10:15 I was dead tired. I briefly entertained the notion of Chumping out but I didn’t. I got home, parked the truck, fired up the sled and drove an hour to meet Charlie. I had committed myself to accomplish this trip.

to be continued…

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.

Badge of honor

One of my favorite things about Christmas shopping is buying the occasional trinket for myself. I can’t help it. I only go in stores once a year so it makes sense that I would find things that I like, right?

This year is special. With the successful Disability claim I finally have an income. It’s a meager one but it’s something. It killed me last year to go into birthdays and holidays with no means to give gifts. I am a generous person by nature and I never go anywhere empty handed. My family understood, but it didn’t make me feel any better. This year I hit the stores.

I live 45 minutes from the nearest shopping center. I try to limit my visits to days that I do dialysis which is nearby. But this week I have gone in every day. I have been working closely with the Social Worker at the dialysis center on my ongoing Insurance issues. She is very knowledgeable and incredibly helpful but is only there on my off days. Therefore it’s taken all of this week to get to get it right.

Yesterday after Dialysis I went to get something for my mother. As I was walked by the Jewelry section a shiny object caught my eye. A Superman pendant. I wanted it. Now, if you know the name of my blog then you can see why this caught my attention. If you know the back story of why I named my blog as I did then you will further understand. I looked for an attendant but none were available. Alas, I was tired, wanting to get home so I left, knowing that I would be back today.

This morning I showed up at the dialysis center to find that the Social Worker wasn’t in and wouldn’t be for several hours. I decided that I would stay in the area and come back later. It was too much of a drive to go home and then come back. I went to get an oil change on my truck, did some food shopping and went back to the center. She was still not there.

I went back to the store. This time there was an attendant at the Jewelry counter. I asked the lovely red-head (my favorite…Grrrrrrrr)
named Ginger of all things to take the pendant out so that I could look at it. The price caused me to spin on my heels until she mentioned the word “discount”. Discount indeed, by the time she was done I bought if for 1/3 of the asking price.

As Ginger was ringing it up, she looked up and asked “any significance to the pendant?”
“Do you mean to say ‘why is a grown-ass man buying a Superhero pendant’?”
She turned a little red (pun intended), “No, I was just wondering if there is a story behind it.”
“There is, actually, but I don’t want to bore you.”
“Bore away”, she said, “It’s a slow day.”
I explained that I had a blog. About how my wife had derogatorily nicknamed me Superman because she thought I was so stubborn and hard-headed and invincible. I explained that being chronically ill, it helps me to wear the badge to remind me to be strong. She hung on every word.
“What’s your illness?” she asked.
I told her. She had a cousin that was on dialysis. I told her that I was as well. She told me that he was about my age, 46 or47. I told her that I was 53. She didn’t believe me and also told me that I look pretty damn good for a guy on dialysis. I told her that she just made my day.

She offered to box it up. I told her I would wear it out. She laughed. I walked out feeling like a man of steel.

Later, at the center, I resolved my insurance issues. As I stood up my pendant fell out of my shirt. The Social Worker commented.
“Nice pendant. Like your blog,right?”
Apparently the one Nurse that I showed it to spread the word. Not a bad thing I suppose.

I may find myself working my way back to the store to see Ginger again. After all, I do so love a redhead.