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.


Buzzcuts, beauty and BS

“Bill, I’ve got a woman on the phone and I really can’t figure out what she wants. Will you talk to her?”
“Sure, Kristen. Just give me 3 minutes to get back to my office and transfer it over. Got a name?”
“Harley.” Kristen smiled and walked back to her section of the office.
“I’m intrigued.” I called after her.
“Knew you would be” she replied. She had seen the entire shelf of miniature Harley Davidson models in my office.
I made my way back to my office to take the call.

She was a very sweet woman and I knew I liked her from the onset of the call. It soon became evident that Harley’s call was better suited for the Sales Department but I gladly gave her my time. Her need was simple, she needed information on a Handicapped Accessible vehicle for her adult daughter who was afflicted with Cerebral Palsy. She had heard from one of her friends that worked with us that we were a good finance company. The problem is that we don’t sell vehicles, we only finance the dealers who do.
She not only needed financing, she needed to find a vehicle as well.

I really couldn’t do anything for her but a little voice in my head was whispering to me that I needed to try. I took her information and told her that I would call her back. She was thankful for my time.

I dedicated myself to spending as much available time at work to helping Harley and her family. I searched the websites of my dealer base for anything that remotely met her needs. Coming up empty, I searched outside my network. Everything I found was highly specialized conversion vans and they were over 30,000 dollars. Harley’s single mom budget was less than 10,000. The hydraulics alone on these vehicles were more than that.
The next option was full size vans, the ones that Municipal services used. There were an abundance of those, all higher mileage but meticulously maintained until they were retired. I found a reputable dealer and made the call.

Having negotiated a near wholesale price on a older, but very clean van I asked the dealer to stand by, that I would call him back as soon as I could. I called Harley and explained to her what I had come up with. It was not her first choice but recognized that it was all she could afford. I asked if she wanted to proceed. She did. I explained that she needed to file a credit report and an application. Once she did I would take it from there.

Everything checked out. Now the wheeling and dealing had begun. I had to coordinate with one of our registered dealers to buy the vehicle and then sell it to Harley. I jumped through hoops to get this done. But I did it.

Having never met Harley face to face, when the day came for her to pick up her vehicle I insisted that I be there. My manager and I drove to our retail store and waited for her to show up. Before long, a beat-up sedan pulled in. Harley stepped out and I immediately knew that she was named right. A short, strong woman built like a beautiful motorcycle. Big, beaming, ahem…headlights, a strong chassy and built for speed. She was beautiful. I watched her as she went to her trunk and took out a wheelchair, opened the rear door and lifted her adult disabled daughter out of the car unassisted. When she was done, and Breauna was secure in her chair, she stretched and winced. Her back was clearly killing her. She then turned and asked,
“Which one of you is Bill?”
I stepped forward and introduced myself. She threw her arms around me and thanked me for my efforts. Her smile could launch ships.

My manager and I made small talk with her for a bit. She then went in to sign the paperwork. Once she was done I showed her how to use the hydraulics for the lift. It became clear that it would be a process to get her daughter in and out with all of the steps involved in strapping her in but it was what she asked for.

After a few pics for the scrapbook, they drove off.

The next day, Harley called me in the office and asked me for my cell phone. I gave it to her. She called me that night. I learned her entire back story. Harley had been diagnosed with breast cancer 3 years earlier. Her headlights were not stock, they were surgical. She bounced back from that to suffer a back injury in a motorcycle accident. She still managed to carry her daughter unassisted for years. She wanted me to know everything about her and I gladly listened. We became FB friends that night and stayed in touch.

Last night Harley posted a picture on FB. Her head is shaved. Her trademark smile as broad as ever. She boldly announced to the world that she has cancer in three areas of her body and she asked for prayers.

I will gladly pray for her. She is always in my thoughts. She is an example of those times when a job can be a real vessel of positive change, to make a difference in someone’s life. But thoughts and prayers aren’t enough, I want real answers as to how this poor woman, despite her outward strength is forced to endure such physical and emotional trauma. It’s total bullshit to me.

God bless you, Harley. I’m still here for you. As you have been for me. You look beautiful in your buzzcut, because your beauty is beyond physical. It shines right from your gorgeous soul.


A familiar view

It’s 3 AM and I’m wide awake. I’d been admitted at midnight.

The clatter in the halls and the soft, incessant beeping of machines, as familiar as they are to me, could not be ignored. Television wasn’t an option, I had turned it off at 2. Canned laugh tracks weren’t masking the all-too-familiar sounds and sensations of the hospital room. I’d never been in this particular room before, but if hospital rooms were hotels, I’d qualify as a certified TripAdvisor reviewer. Trust me, they’re all the same.

I was preparing myself for a sleepless night. Once a huge deal to me, now it was no big deal. In a former life, being awake at 3 AM was panic time. I would be so worried about being able to carry out the responsibilities of my work day on no sleep that I would obsess about it and be up all night. Alas, that was when my life was structured and meaningful. Now, being up all night barely affected me or my meager itinerary. As I sat up in the uncomfortable, narrow bed I looked forward to the one thing I could always count in during a hospital stay, some good thinking time.

The last 3 days had been a blur. After a 3rd day of failing to get out of bed for more than an hour at a time, shivering under blankets, a non-existent appetite, and experiencing complete exhaustion at completing even the most mundane physical tasks I had forced myself to take a shower at 8 PM. The thought of removing the 3 layers of clothes in order to even get in the shower filled me with dread. I ran the water until the bathroom steamed up a bit and I forced myself to get in. As I did that I was already dreading stepping out of the shower to get dressed. I have never felt so vulnerable to cold as I have lately. I ran the water hot, hotter than usual and hoped that it would wash away whatever toxins were stealing my life force from me. The effort that it took to wash my tired body sent me into a coughing fit. I nearly passed out I was so short of breath. I stayed in the shower longer than usual, enjoying the heat and steam, and still dreading the brief but brutal moments of drying off and getting dressed. After mustering the courage to do so, I found myself so winded by the mere act of getting dressed that I had to take a break. That told me all I needed to know, I was going to the ER. I was finally convinced that this wasn’t just another “episode” that CKD patients go through. I was more than run down, I was sick.

The 30-minute drive to the hospital was easy. Sitting was no problem. Walking the long corridor from the main entrance to the ER proved to be more of a challenge. By the time I got to the registration desk, they were already scribbling “shortness of breath” as the cause of my visit. Never having been to this hospital, I had to go through the entire registration process. By offering up “transplant patient” at the beginning of the visit, I certainly sped things along. I was immediately seen by the best doctor they could offer that graduated from the bottom 3rd of his graduating class. I’m not being cruel, it’s a small NH hospital that is only equipped for so much.

I explained my history, as I had done so many other times. They took vitals and made pages of notes. When they didn’t recognize half of the meds on my carefully crafted list I immediately knew I was in Mayberry R.F.D. They got the chest X-Ray done and, as I suspected, it was pneumonia. They immediately, and by that, I mean in 2 hours, admitted me. Which brings me to where I am now, wide awake, without comfort, body worn down and my mind searching for clarity.

Despite my serene surroundings, I am bombarded by my thoughts. The last month has been a blur of illness and disappointments. Flare-ups of symptoms once under control had dominated my time and energy. Medicinal changes and side effects have sidelined me from almost everything I enjoyed doing. I am annoyed that the pneumonia is back. This is the second time I’ve had it and the last time was the final blow that forced me out of employment. I’m annoyed at the perceived quality of care I am going to receive. The staff is nice, but they clearly have very little experience with a patient with a history such as mine. I have enough free time to embrace some bitterness also. I have been so disappointed by the events of the Friday before. I had gone to meet some friends at a long-anticipated event and despite the excitement and the planning, I had felt so miserable that I had to leave early. I had so many questions and things to learn from these people. But my expectations of tales and laughter and stimulating conversation over a bountiful meal turned out to be sipping ice water and picking away unenthusiastically at a meal that barely interested me at all, trying not to show my guests how nauseous, exhausted, cold and dying to get out of there and into my warm bed at all costs I was. It further annoyed me that I was already “writing off” the events of the past week as “just another setback” and a part of the new reality.

Is this my new reality? The silent room gives me no answers, and I haven’t the strength in my lungs to hold my breath for one. I am at the point where I know that I am losing the person I was just a month ago. It’s not the illness talking, I know myself well enough to look past how I’m feeling now but to the future. I have been able to pull myself up from so many of life’s beatdowns, dusted off and told it to Fuck off. But at that time, the good days greatly outnumbered the bad. Am I prepared for the days when my “episodes” outnumber my good days?

I have to do something. I thought I have been eating healthy. I can do better. I thought I have been making good choices. I have to make better. I thought I was feeling pretty good. I must do something better.

When I get out of here, I think to myself, I need to make some changes.

As expected, I was released with an antibiotic after only one day. Left to fend for myself again. Left with time to think, to assess and re-evaluate. Where is my source of power? How do I tap into it again? What needs to happen to make me again crave the challenges outside of my doors more than the comfort of my own bed?

I need to be a conduit of inspiration, not an object of pity. I don’t think I’m overstating this. This morning, when I looked in the mirror…I looked sick. That I cannot accept.

 

Talking to granite

I never thought I would be the guy to sit in a cemetery and talk to a piece of granite. I have lost many, too many, friends and family and I always make my visits to their places of rest. But I don’t sit and talk. That changed when I lost my Dad.

Yesterday was the 4th anniversary of his death. I wasn’t in the mood to write yesterday, it’s a tough day for me. Living in a house that he built doesn’t help. I see his touch everywhere in the woodworking, design, and collectibles. As I write this I’m sitting in his favorite chair with his beloved dog sleeping at my feet.

4 years later I still tear up when I think of him and when I attempt to talk about him I invariably choke up. I have been fortunate to have been asked to speak at some events I am a part of and have foolishly attempted to speak of my father and consequently blubbered in front of packed rooms. Historically, I am not a crier. But when it comes to Dad I can’t control it.

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As a guy with a long family tradition of “sucking it up and moving on” I am puzzled why it is not getting easier as the years pass. Time heals all wounds, but it doesn’t fill all voids. His loss occurred at a time in my life I probably needed him the most. I was finally coming around to understanding the things he said. Things that I rejected in my youth that I later learned he was dead on about. I had just started to appreciate his simplistic approach to life; be nice to people, tell the truth and work hard and the rest will come. I had just started to recognize that people with his value system and work ethic were slowly vanishing and his presence was a treasure. I was at a point when I needed his eternal optimism to fuel me as I entered the worst chapter of my life. He was minimalism at its finest…less is more. Less showboating, less ego, less drama, and aggravation.

I miss him. The world was a better place with him in it. He deserved better. He worked so hard for so many years to provide for his family and build a retirement. He retired early because his co-workers were all dying young. He enjoyed about 3 years before Parkinson’s reared its ugly head. It reduced a strong, proud man to a mere shell in a long 8 years. Those years took more than his mobility, they took his pride and his independence. Death was a relief for him, I saw his face when he took his last breath.

My life has been especially challenging lately. I am trying to maintain the family optimism and positivity. It’s getting harder. I wish I still had him telling me that everything is going to work out. I suppose while I’m wishing for things I wish that he could have enjoyed his retirement. I wish that he could have celebrated his 50th wedding anniversary. I wish I could tell him how many things he was right about.

I wish that I didn’t have to tell a granite slab things that I wanted to tell him to his face.

Tell the people in your life how you feel about them today, don’t wait. Tomorrow is not a guarantee. You may find yourself sitting in a cemetery talking to granite also. If you’re reading this it’s because I chose to share it with you. Because I care about you and I won’t wait until it’s too late to tell you. Regret is as eternal as granite.

Light at the end of the tunnel

So relaxed, like never before

My arms nailed to the bed

My legs won’t move

Too numb to speak

No desire to try

Peace hijacks my body

the pain has fled

Is that a light I see?

Am I moving toward it?

I don’t care

I’ve longed for this

Free at last, done with it all

I surrender

Take me now

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Bright lights. Screaming. Calling my name

Come back to us they say

Yelling and prodding at my mortal shell

Are you in there…What is your name?

He’s back! someone says. The questions ensue

I’m back from where? 

It felt so good…

One of my late Grandfather’s favorite jokes was “I’ve seen the light at the end of the tunnel. It’s a train.” He was a funny bastard. But I beg to differ, and here is why.

 

“Cellulitis. Isn’t that the stuff that you suck out of the Real Housewive’s fat asses?” My doctor was not amused. I assured her that I was joking, that I was already intimately aware of what cellulitis is. I had it once before and my nervous joking didn’t cover how alarmed I was at this diagnosis. I was prescribed an aggressive antibiotic and given a phone number to call if the infection’s redness crept past the outlines she drew on my wrist and leg. I was on my own for the weekend. Football and bed rest.

I couldn’t help but reflect on the last time I had it. I remember it like yesterday.

I woke at 5:30 AM one morning in July feeling awful. Nauseous, raging fever and confused. My children were small, I knew that they couldn’t be left if my wife drove me to the hospital so I called my father. He rushed over and took me to the hospital. As we pulled into the dropoff area I opened the truck door, fell out and vomited all over the parking lot. Emergency techs got me into the ER. I had a fever of 104. An hour later they still didn’t know why.

I was admitted. In order to get me to relax they gave me morphine. The nurse working with me joked that I, and all men in general, were “big babies.” I wasn’t in the mood to justify myself, I let the morphine do its thing. What happened next will stay with me forever, I will need that long to explain it.

I felt such peace. I felt more relaxed than I had ever felt. My arms and legs felt as if they weighed hundreds of pounds each, I couldn’t move them. And I didn’t want to. All pain left my body. I saw blinding white light and I’m pretty sure I felt as if I was moving towards a tunnel. It was amazing. Until I came back. See, everything I just detailed I recalled later. What actually happened was the morphine attacked my weakened kidneys and I went down. Unresponsive for at least 3 minutes. My heart never stopped but I know that I was dead or awful near it. My nurse had come back in and seen that I was slipping away.

I woke to at least 5 doctors and nurses yelling at me, bright lights and beeping machines, repeated inquiries of “can you hear me?”, and “come back to us”. After what seemed like hours I was able to tell them my name and date of birth. I could see my mother and father’s concerned faces in the sea of people surrounding me. I was back.

After everything quieted down my nurse came in and tearfully apologized for calling me a baby. I didn’t care. As she leaned over my bed she leaned on my right leg and I screamed in pain. She pulled the sheet up and exposed my leg; it was twice as thick around as my other. I was immediately transferred to the ER. Cellulitis.

I spent 8 days in the ER. I almost didn’t make it. They couldn’t stabilize the infection. One hazy memory is of my wife walking in with my then 8-year-old daughter as I vomited all over myself. A bad moment indeed. I spent most of my time in a haze, frantically trying to figure out what I had experienced. I asked my mother about it. She said that I was down for the count. As if I had been dead for hours. She was terrified. As I put the pieces together I realized that I had seen the other side. And I am not afraid of it. I know that I will feel relaxation and peace, 2 things I have never had enough of.

Of course, I recovered, I would not be writing this otherwise. But today I was jolted to think that I could go through that again. I just hope that this new antibiotic works by Monday. Otherwise, I’m getting admitted again.

Oh well, worst case scenario is that I compare notes with my funny grandfather about the whole tunnel/light thing.