memories – Page 3 – The Tao of Bill

Hot summer days

Those hot summer days
Basking in the sun’s rays
Outside, even when skies were grey
The knock on the door
Can Billy come out to play?
Cops and robbers in the yard
Shins and elbows always scarred
Streetlamp curfews
Wasted days were few
Wax bottles and candy cigarettes
Eight-track tapes and cassettes
Hot afternoons in the pool
Mirror shades, try to look cool
Leaf piles to dive in
Saturday night drive in
Sleepovers at camp
Motocross bikes, jumping that ramp
Swimming and fishing
shooting stars and wishing
Talking to my first cutie
Worried about cooties
Bad music and One hit wonders
School dances and social blunders
First day of school sneakers
Hi-Fi and Big speakers
The crack of the bat
My first baseball hat
First day of tryouts
Don’t make a flyout
Ground ball heading to first
Damn, I missed it. I’m the worst

Those days were the best
I just didn’t know it
Let me go back
This time I won’t blow it
I don’t want to play adult
Tell Zoltar to stop winking
I wanted to be Big
What was I thinking?
I miss my old house
I miss my first dog
I miss not worrying
About every damn thing
I miss feeling good
rugged and strong
I’ve lost my joy
My days seem so long
My longevity is fleeting
I’ve taken a beating
I’m tired of this, my downward phase
I want to go back to those hot summer days

My favorite place

FB memories, the well-intentioned feature that shows you posts from years ago “on this day”, has been my Lex Luthor of late. They have been a source of great anxiety and annoyance as they remind me of the dreaded “used-to’s“. All of the memories that pop up are of better, healthier days. Days that I miss so badly. Today, one popped up that I wrote in 2015 about my beloved hobby of Mountain Biking.

Post-Transplant in 2011, I needed a means to get my body healthy and I chose biking. Initially, I bought a street bike. I was a newbie so I rode mostly alone. Once I was able to ride 20 miles or more I began to ride with organized groups. I became strong enough to ride 55 miles in one day, while never the fastest, I took great pride in just being part of it. It was my recovery. But it created a new problem, immunosuppressant medications increase your odds of skin cancer and after 2 years of riding, I had 3 Squamous Cell Carcinoma’s removed from my face. I was told to stay out of the sun.

So I explored Mountain Biking. I bought a bike, researched trails and hit the woods. I was immediately hooked. It was challenging, the rough terrain and obstacles required skill and technique, yet I was compelled to rise to the challenge. The atmosphere was amazing, miles into the woods you weren’t observing nature, you were immersed in it. I began to take my camera to photograph the Deer, Bears and even Fisher Cats that I would encounter (from a safe distance of course). I would head out early in the AM in the hopes of seeing my favorite sights, crashing through a clearing to see a pond, the mist coming off it in the early morning heat; the owls that would buzz me as it headed to its tree to sleep the day off after a busy night of hunting; and of course the wonderful sight of nothing but me and trees. It was my Nirvana. And I was out of direct sunlight so no skin cancer.

Through FB I found a group to ride with and I made an instant group of wonderful friends. Riding with them made me happier than I had been in years. They weren’t just riding buddies, they were real friends. By 2015, I was a regular part of the group. Crazy Bill they called me. I took risks, I fell a lot, but I gave it hell and went home every day feeling accomplished and euphoric. Then I got sick in the spring of 2016 and I suppose you know the rest.

Why am I telling you this? Because despite how much today’s FB “Reminder” saddened me, I was reminded of my Buddy Tom of Tom Being Tom Fame had written a post about his favorite place and challenged his readers to write of theirs. So I turned a negative into a positive because I’m sick of being down.

Here is the FB post from 2015 that started all of this if you would care to read it:
This past fall I made a decision that I was only about 80% sure of. My new activity for the last few years is biking. It was my chosen rehab tool after my surgery to get into some semblance of shape. I got 2 bikes, a street, and a mountain bike. I upgraded once on both but I couldn’t decide which one I liked better. But last fall I traded in both bikes on a new, nicer full suspension Mtn bike. I picked one and went with it. Well, I am now 100% sure that I made the right decision. Many of my family and friends have questioned both the commitment and the hazards I have put upon myself and to be fair I have hurt myself badly a couple of times. People have questioned the wisdom of a person my age with my medical history taking such risks. They don’t understand it, and a lot of the risks I can avoid but I want to push myself, to experience adrenaline and accomplishment and I don’t give a shit about pain..it goes away a lot faster than regret over doing nothing. I love the trails, the woods, mother nature and the comradery of the new friends I have made. But it is even more than that now. Mtn biking has become a metaphor for my life. Let me explain.
When we first start the ride it is easy, you are fresh like when you wake in the morning. But you know the hills and the obstacles are coming, you either prepare for them or let them blindside you.
When the trails are smooth and flowing it is the equivalent of your life going smoothly. Enjoy it but be in the right gear when you round that corner and see the hill.
The hill is adversity and the obstacles; exposed roots, jagged rocks, and logs are the people telling you that you can’t do it.
When you make the decision to try that hill, to power over that rock, to push yourself you have made the decision to at least try to prove them wrong. And make it or not, at least you tried.
Then you come to a downhill. But it’s not a smooth path it’s a steep, rocky and rooty obstacle that can send you over the handlebars if you are not careful. This is the downward spiral that we can fall into. We can plummet and crash, we can stand there and look at it, or you can carefully navigate it to safely reach the bottom with as little damage as possible.
And if you are able to climb the next hill, stand upon it and look down at all of the obstacles that didn’t stop you. And if you do it once, you can do it again. And sometimes it is the climb that you never made, until today.
Nothing pleases me more than getting up a hill that I never thought I could; to make it through a rock garden that sent me flying a week before; to race through an opening to find the parking lot waiting for you. Knowing that the end of the ride is like the end of the day. I got through this one and I am not afraid of the next one.

I wish I still had that attitude…but at least I took a shot at retrieving it today.

38,325 days…a life truly lived

Yesterday, May 2^nd is a tough day around this house. My mother was uncharacteristically quiet and I had no interest in pushing her to talk about it. I knew why, and wasn’t going to bring it up.

Over the course of several May 2nds for the last 16 years, my mother had lost her father, her mother, and her 2^nd husband. My Grandfather, a wonderful man who I have written more than one tribute to passed in 2002. He lived until 92, I miss him terribly but he didn’t owe anyone anything. My Grandmother died in 2015, 12 years to the day that my Grandfather passed. That was no coincidence, despite her semi-conscious state she knew what she was doing. 1 year ago, on May 2nd, my mother lost her second shot at love when her husband of 3 months passed from lung cancer. He lasted 10 days from diagnosis to departure. May 2^nd is, safe to say, her least favorite day of the year.But she doesn’t talk about her problems, she bottles them up and shoves them down deep where they can’t be felt.

I felt guilty being in a good mood yesterday knowing she was in such pain. I couldn’t help it. The sun was out, I was on the deck blogging in view of my beloved duck pond. I washed my truck without sucking wind and I was finally starting to feel better. I was grateful for all of the support I have gotten from friends, family and the WP community. As my buddy Bojana pointed out, I have been fortunate enough to have some wonderful people in my life. Especially those that have passed on. Instead of mourning, on March 2nd of this year, I chose to celebrate the memory of my Grandmother.

It is hard to be sad about losing someone who lived almost 105 years. In my estimation she graced God’s green Earth for 38,325 days give or take.

Born in 1910, Marion Francis Barnes lost her parents in a house fire when she was only ten years old. She was raised by her Grandmother, a tough as nails Yankee woman with ties to the Mayflower and as deft with a wooden spoon as a Ninja warrior and his sword. I barely knew her, but I heard the stories. She did an admirable job of raising Marion and her sister Bertha, both finishing High School as strong, independent women, as the Great Depression in 1929 ravaged the country. She wasn’t entirely unscathed by the atmosphere of the times, pictures of her then suggest a very serious, proper woman who valued etiquette and upbringing. If one didn’t know better, she was a snob. In actuality, the purest example of a New England “Blue-blooded” Yankee.

Marion would become a victim of the wiley charms of my future Grandfather, a hard-working young man who didn’t worry about his future because he could build, paint, repair, rebuild and refurbish anything. Another skill, he was not fazed by her Yankee sensibilities and I suspect that he was the first person to ever make her laugh. The unlikely couple married in 1935 and began their life of 65 years together. Family was the main goal, and once the house was built, by him, my Grandmother conceived 3, and lost, 2 babies. One was a miscarriage and one a stillborn. She became pregnant for the fourth time with my mother just before my grandfather enlisted in the Navy Seabees and went to fight in the Pacific in WW2. He tirelessly wrote her letters. I have them in a box, all of them expressing his love for her, his son Charles and my mother. I’ve read the letters, one thing that stood out was the guilt when he missed penning one letter a day.

Marion was busy doting over my mother. Having lost 2 children already, nothing was going to happen to Charles and my mother. She worried about her husband, feverishly wrote letters to him and friends and patiently waited for him to come home and resume their lives together. They, as one single couple, embodied the Greatest Generation. True to the nature of the said generation, when he came home, he didn’t relax. He didn’t talk or complain about what he saw (he saw a lot as I would later learn) but instead, he started making up for lost time.

My Grandfather returned from active duty in 1947. He spent 2 years working on battleships once the Pacific campaign was over. Charles was 6, my mother was 2. They acted as if they never skipped a beat. They would almost never be seen apart after that. Theirs was s love story for the ages. Life went on and they were a big, happy family again. But it was not without heartbreak, tragedy and incidents that tested the concrete foundation of their marriage.

Tragedy would strike a mere year later.

To be continued…

A scene from the Antique store

my first piece of fiction…I hope you enjoy

It was a beautiful fall day, a light breeze playfully toyed with the colorful leaves littering the small but bustling street. The street, much like the town, was old but well kept. The town, like so many small Anytown USA’s,was what was left after it had lost its “Big Company”, in this case a Textile Mill, and the jobs that it provided. Most of the younger families had long moved away but its loyal, remaining citizens insisted on preserving their little town. A particular source of pride was the row of shops on Main St, where a mother and her young daughter were walking hand and hand along the cobblestone sidewalk. They were clearly not local, their pace lacked deliberation as they alternated between staring in the storefront windows and glancing around in all directions. Their clasped hands suggested fear of separation more than that of a maternal bond. Mom looked nervous, out of her element, and intent on holding her little girl, no more than 8, as close to her as possible.

They continued down the sidewalk, almost going into several stores, only to turn and continue walking. It was not until they came upon one shop, more inviting than the others, that caused them to stop and stare. The name Yesteryear Today was displayed in golden letters on the thick glass window. The mother, clearly a lover of antiques, gently tugged her daughter through the massive mahogany door. A bell announced their arrival.

As they shook off the chill of the fall air, they were immediately greeted by the smell of cinnamon. Apparently no stranger to antique stores, the woman stood in the doorway, her daughter obediently clutching her hand, and surveyed the enormous room. She took in the afternoon sunlight streaming through skylights and illuminating 3 walls of shelves overflowing with pictures, dolls, books and knick-knacks (as her mother had called them God rest her soul) and a crowded floor littered with tables, chairs, desks, cabinets and sofas that she knew (from her mother again, God rest her soul) had names like Edwardian, Davenport, Divan, Fauteuil, so many others. She noticed the conspicuous absence of the pungent, mildewy odor of old books and discarded memories common in most antique stores. Perhaps it was the cinnamon.

“Cider?” a voice called out to her, surprising her. She had been so fixated on a rolltop desk to her left that she had not noticed the elderly man approach her. He appeared to be about 75, dressed in crisp khakis, a white shirt, a grey sweater and a bow tie. His appearance immediately struck her as meticulous, right down to the knot in his tie.

“Beg your pardon?” she asked.

“Sorry to have startled you, Ma’am. I was offering you and your lovely little girl a hot cider. Fall is in the air you know. I may be a bit early but I admit it, I’m a sucker for the season, hot cider and all.” He turned his attention to the little girl, stooping down he said, “Do you smell the cinnamon, young lady?” I add real sticks to the cider.” The little girl hugged her mother’s leg and looked at the floor.

“You’ll have to forgive my daughter’s shyness, please don’t take it personally”.

“Don’t be silly, young lady, no offense taken. What is her name?”

“This is Lily”. She looked down at her daughter and smiled. “And I’m Kelly. Kelly Swanson”.

The old man’s brow furrowed and a concerned look crossed his face, “Any relation to the Hemlock Lane Swanson’s?”

“That’s the one”. He knows my family. “It’s been in probate for a year but since I just lost my apartment this seems to be my best, most logical move. We dropped off our bags this morning and decided to check out the town before we unpack. I hate moving.” Stop prattling on! she scolded herself. He doesn’t need to know your life’s story. He’s going to think you’re nuts and you just met him. She noted to herself that he was almost unsettlingly easy to talk to.

“Well, Miss Swanson, welcome to our town, circumstances as they are. I must say, that accident took a little of all of us. We haven’t had a crash like that in decades. Just awful. I’m so sorry for your loss. Again, may I please offer you a cider?” He gently steered Kelly and her daughter to the small table with the old-fashioned hotplate, on which was a small steel pot of cider. He ladled some into a cup for Kelly, then excused himself for the stated purpose of getting some ice cubes for the cup he was preparing for Lilly.

After he returned and had stooped to convince the very shy Lily to try his cider, he again turned to Kelly. “My name is Bernard Steele, proprietor of this fine establishment” and he bowed to her slightly. She was visibly taken back by his old-fashioned mannerisms as she was his pristine appearance. “Please look around the store, I take great pride in my collection of memories”.

“I will Mr. Steele, thank you so much.” She reached down for Lily’s hand and was surprised to not find it. Apparently, her shyness had worn off a bit. Kelly scanned the room anxiously and was relieved to find Lily intently staring at a old bicycle. Relax, she told herself, we’re not in the city anymore. She can be five feet away without calling in an Amber Alert. She fervidly wished to herself for the ability to lighten up and not worry so much. My mother smothered me, I’m not doing it to her dammit! She took a deep breath and exhaled, staring bemusedly at her daughter. She certainly looked like she was happy all the way over there. She again caught herself and looked away. Her gaze was immediately met by an old roll-top desk. If she didn’t know better it could be the one her Grandmother had had in her basement. She slowly walked over and studied the antique desk, running her hands over the aged Mahogany, marveling at the craftsmanship.

She was powerfully drawn to it, as if the desk was beckoning her to sit at it. Pensively, she pulled the wooden bench out under the rolltop and sat. What happened next she would have difficulty explaining to anyone. It had to have been a vision, a hallucination even, whatever label applied, she found herself holding a fountain pen in her right hand. Beside her on the desk was a jar of black ink. A partially finished letter lay under the thumb and forefinger of her left hand, barely visible below the fluttery sleeves of her blouse. I don’t own such a blouse! she realized in shock. Tucked into the corner of the leather blotter was a letter. Confused, her eyes furtively darted around the room, at which time she realized she wasn’t in the antique store anymore, but instead a room she had never been before. Puzzled yet intrigued she took the letter from the blotter, opened it, and began to read.

Dear Marion:

I’m so sorry I didn’t write you yesterday. We had a surprise inspection below deck that took all day. Then we spotted a Kraut Sub that we chased all damn day. I had KP at night so no letter time.
I hope you are doing ok with the little one, I’m sure she’s a handful. I saw the pics, she looks like the Milkman!. I kid of course, I know you wouldn’t do that to me. It’s a damn shame what’s happening to some guys though. Wives running off with Gardeners and handymen, war-dodging bastards, while their husbands are at sea. Not you. You wouldn’t do that to me would you, kid?
We have something big coming up. I can’t tell you much more but you may not hear from me for a few days. Letters home are being shut down. Please know that I love you and as soon as we win this damn war we’ll pick up where we left off.
Love you always,
Mel.

She then removed the letter from under the sleeve of her blouse and began to read.

My dearest Mel,

I have been getting your letters. I wait for the mailman every day, but not like you joked about you silly man. I will never do that to you. Your daughter is growing fast and she wants to see her Daddy so do what you have to do and please come home so that we can

That was all she had written. The She pushed away from the desk with an audible gasp.

“Miss Swanson, are you ok?” Mr. Steele was standing over her, a look of consternation on his face. She was back in the store!? What the hell is going on here! She then remembered the letter.

“June , 1944!” she exclaimed. “That date! That’s just before D-Day!”

“I’m sorry Miss Swanson, but it’s clearly October and we are considerably past the year 1944. Are you sure you’re ok”?

“It was June, I mean it could’ve been. I…I don’t know. Something very strange just happened to me and I’m a little rattled”. She noticed the cup of spilled cider on the floor next to her and sheepishly apologized to Mr. Steele. He scurried off to find some paper towels. Kelly immediately turned her head and scanned the room for Lily.

She watched Lily as she admired an old bicycle. It was one similar to the one she had ridden as a little girl, complete with the rainbow-colored tassles on the handlebars and a “banana seat”. She had loved that bike. Lily’s concentration was intense, bordering on a trance.

Lily was indeed in a trance. In her head, she was riding the bike. The fact that she didn’t know how to ride a bike had no bearing on the experience for her. She was not only riding, she was cruising, and having a fine time for herself as she did. She was riding with friends down Main St, Lily was unsure what to make of the experience but she didn’t want it to end. She felt wild and carefree, as immersed as she was in the experience she had the awareness to know that in her real life she was anything but. She pushed that revelation aside and enjoyed the moment, a huge smile lit up her face. She felt like nothing could ruin this moment. Until she heard her mother’s voice calling out to her.
“Lily!”
Ignoring it, she thought to herself, No, this moment can’t end. Again, her mother’s called “Lily!” and again she ignored it. Suddenly she felt a hand grab her shoulder and she pulled away quickly. The loud crashing sound of the bike hitting the wooden floor startled her. Almost as much as the look on her mother’s face as she stared at her.

“Lily, are you alright? I called you twice and you were just looking off into space like you were in a trance. Here, let me hold you…” and extended her arms for a hug.

“No” Lily said and pushed the outstretched hands away. “I’m ok, I don’t need a hug. You hug me too much. I want to ride my bike now”.

Her mother kneeled down and said. “Ok, no hug. But honey, you don’t know how to ride a bike”.

“Yes, I do. I can do it all afternoon and ride all over town with no adults watching me or my friends.” She crossed her arms indignantly.

Kelly leaned in, “Sweetie did you see something special when you touched that bicycle? Because something happened to me. You can tell me. I promise it won’t sound crazy. In fact, I hope it is.” Crazy is the only explanation she remarked to herself. I was just in 1944 and now she knows how to ride a bike! At that moment, a sad realization occurred to her that the reason Lily had never learned to ride a bike was because she never let the girl out of her sight. She had reasoned it away by memorizing crime statistics and watching the news, but the fact was she had sheltered the girl. How many times did she take your hand before you took hers she asked herself. She knew the answer, and she wasn’t pleased with herself. But, she rationalized, her father left us when she was 3 in a shithole neighborhood and I did the best that I could. She shook her head, refocusing herself. She needed to stay focused on her daughter.

“May I interject?” asked Mr. Steele.
“Yes, of course Mr. Steele.
“Never underestimate the power of old things. I believe they have a memory of their own. It’s a powerful thing when you think about it. To think that objects may capture and retain moments. I find it fascinating! I like to think of my little store as a magical little museum of memories” he offered as he flamboyantly gestured around the room. “May I suggest, young lady, that you just experienced a bit of magic?” He leaned into Kelly and whispered, “perhaps you did too, my dear?”

“See Mommy, it’s Magic. That’s why I can ride a bike. Well, I could. I mean I just did. Awwww you know what I mean”. She was clearly coming back to reality.

“Sweetie, I think we need to leave now. It is getting late and I don’t want to unpack too late tonight.” She gently but persistently nudged Lily towards the door. “Say Thank you and goodbye to Mr. Steele”.

“Goodbye, Mr. Steele, Thank you”, Lily said. They then started for the door. As they stepped outside and closed the door behind them, the loud bell accentuated their departure. Lily said to her mother “Is it alright if I just walk beside you, you know, without holding hands? I’ll be ok, I feel safe here.”

“I’m sorry I’m so protective honey, I just worry about you. I can’t help it.” She was still instinctively thinking about reaching out for her hand. She fought the urge and instead put her hands in her pockets, it was getting chilly anyway.

“I saw and felt something in there, Mommy. I felt warm. I felt safe. And I didn’t feel like you were worrying about me. I was just doing stuff and having fun without getting hurt or chased by bad guys.” She was acting so grown up, so independent. Maybe I have to let her go if she wants to grow. She smiled and said “Something happened to me in there also. I’ll tell you all about it when we get home. Just hold one second.

She turned to the Antique store and opened the door. She looked to make sure Lily was still there (habit) and stepped inside. “Mr. Steele?” she called out.

Bernard Steele emerged from the back room. “Yes, Miss Swanson. I trust all is well with you and the young lass?”

“Of course, Mr. Steele. I just want to say that while I’m unsure what happened here today, you do indeed run a magical place. I may be back later in the week to talk about that desk. I believe my new cellar has a perfect corner for it.”

“Indeed, Miss Swanson. I look forward to your return. And again, welcome to our little town.”

“I want to buy that bike” Lily called from the doorway.

Bernard Steele laughed heartily. “Absolutely, my dear child. I look forward to it. But you must ask your mother, not me. Your mother may become angry with me”.

“Thank you, Mr. Steele. You’re my first new friend here.” Kelly said. She waved to him. As he waved back he winked at young Lily, who would later swear that she saw a twinkle of light, like a star streaking across the Autumn sky.

They stepped outside, the heavy door closing behind them with the ringing of a bell. Together, but unjoined at the hands, mother and daughter walked towards the edge of the square to Hemlock, their steps deliberate and with purpose.

Spring is coming

February is my least favorite month of the year. Despite the days getting a bit longer, it tends to be a cold, grey and boring month. Football is over, and I am a fair-weather Basketball and Hockey fan at best. Fortunately, it’s a short month.

We joke in New England that the first snow falls it is a Glorious occasion when all is white and pure, each flake unique and beautiful. By February the very mention of snow has you hurling F-bombs at the TV. That’s where I’m at right now. I’m just sick of winter.

It snowed again last night. The weather forecast last night called for an inch or two so when I woke up to see about 6 inches of powdery aggravation I wasn’t pleased. I would have “geared myself up” for the shoveling, spreading of rock salt and cleaning off cars. Wanting to get it over with, I skipped my morning coffee and went right to it. It was light snow so I made quick work of it. Stopping to gather my breath, I felt warmth in the air. I looked around and I noticed that melting had already started. I took off my hat and gloves and just stood on the deck, staring at the landscape around me. I could feel it, it’s almost over. Spring will be here soon.

Spring is my favorite season. I thrive on warmth and sunlight. I barely tolerate winter, I accept it as a necessary evil if I am to live in this region but the short days and lack of sunlight take a terrible toll. On the first warm day of Spring, I will be found outside face skyward, soaking in the rays like a desert flower after a terrible drought.

It is New Years Day for Mother Nature, a new beginning as grass turns green, leaves bud on trees, the little critters poke their heads out of hiding, and the Red Sox are in Fort Myers, Florida gearing up for another long season of glorious Baseball.

I can’t think of Spring without thinking of Baseball, and I can’t think of Baseball without thinking fondly of my Dad. When I was a kid, my father was still working his way up the seniority list at his job and he would be laid off almost every Spring. Dad was a Heating Oil Delivery driver and the warm weather meant slow business. I was thrilled to have him around, he worked almost around the clock during the winter. I never saw him. Spring became an association for me. Warm weather, school vacation, Dad is home and we’re gonna watch the Sox.

Dad and I didn’t have a whole lot in common, but we loved Baseball. He taught me to play and we loved to talk about it. One of my favorite memories was watching games on our 3 season porch on a 19-inch black and white Emerson TV with “rabbit ears” antennae. Dad and I would make sure all of the yard work was done in time to sit down for the game. I would listen to him attentively as he explained the strategy of baseball, his most and least favorite players and why he rated them so. It was the only time he wasn’t bustling about and trying to keep busy. When a game was on he was in his seat, beer in hand and relaxed. Until the Bullpen blew a lead, which happened often, at which time he was not so relaxed. Those were hard times economically, but they were special to me.

Today I saw a glimmer of my favorite season. I see on my Calendar that there are 10 days left of my least favorite month. While March can often suck weather-wise, it can also be a good month. And it is one month closer to Spring. Even though I still have 6-foot snowbanks all around my house, I can almost smell the fresh-cut grass, hear the crack of the bat, the children excitedly cheering each other on. And I can still see Dad, Tanned and sweaty, in his faded Boston Red Sox Hat and wife-beater T-shirt calling me, telling me to “hurry up” before I miss the first pitch.

What I wouldn’t do to hear that just one more time.

You don’t look sick…part 3

Revealing to my wife and family that I needed a kidney transplant was a turning point. My children were confused and upset. I told them everything would be fine. My wife painted a much more grim picture. I was furious with her for being so negative, at one point during an unfortunate argument she blurted out “it’s ok kids side with him he’s going to die and you’ll be stuck with me”. It was a brutal comment and hard to bounce back from. I explained to the kids that the best case scenario was a transplant, the worst would be dialysis. Not ideal, but still alive. I kept to myself the attitude that dialysis is the WORST option, giving me zero quality of life. It was a stressful time, only being compounded by the weight of mind-boggling debt and pending foreclosure. Which is historically great for blood pressure.

The backlash on me was partially deserved. By minimizing my condition I did help myself cope, but I alienated my support network. By avoiding being doted on and being treated differently, and most importantly having my family worry about me, I forced them to come to grips with something in a short amount of time, that I have had most of my adult life to deal with…that I may lead a short life. But at that point, I still couldn’t tell people how I was feeling.

At work I couldn’t escape the attention, it was a big story. In late 2009 I was hospitalized for a serious infection that was renal-related. My manager came to visit me on a Saturday with a stack of magazines for me. He said, “looks like you’re going to need a donor soon, huh?” I nodded in agreement. “What if I told you that we might have one? Deb approached me yesterday and wants to be tested”.

I was of course thrilled. She would prove to be a match and, well you can guess the rest. The company made a story out of it. The local CBS affiliate station came to do an in-office interview with Deb and I. For weeks, complete strangers would approach me and say “Hey I saw you on the News! How are you feeling?” People who knew me at the auction and other areas of my life would say “Hey, I saw you on the news. I never knew. You don’t look sick”. Heavy sigh…there was no escaping it now.

After the transplant, it was the new normal. I am blessed to have so many people care about me. The outpouring of support was amazing from friends, family, social media and company connections. My company threw a huge fundraiser for me, everyone knew my story. It truly renewed my faith in people. But post-transplant I was riding a wave, I felt great and I wanted to put 15 plus years of feeling like shit warmed over behind me. I worked out, I hiked, I bought a bike and then a mountain bike. I found a group on Facebook of local mountain bikers and I showed up. I made a bunch of great friends. One day, after a particularly grueling ride I peeled my sweat-soaked shirt off to change into a dry one and there was my enormous scar for all to see. One guy inquired about it and I gave him the brief breakdown. “Hey, I saw you on the news. That’s quite a story. You look great man!” Now that’s what I was going for.

Now let me refocus for a moment. This series is not about being happy or glad or grateful if people ask you how you are. It is about being known by your illness. When your illness defines you. When people think of how much it sucks to be sick…they think of you.

So when I constantly reference the times when people say “You don’t look sick” or ask “How are you feeling” it puts a very particular set of reactions into place. So far in this series, I am describing the birth of Superman as a coping mechanism. As opposed to the earlier-in-life Superman that tried to save the day and fix everything. He was born because I simply couldn’t afford to look sick and I could never actually tell anyone how I actually felt.

My family relied on me. I needed to be the Dad and husband I promised to be. I needed to be strong. So I covered it up, in a way I denied my illness. For them and for myself. When I was really sick, I had to say no to a 10-year old and a 9-year old who asked their Dad to play football in the front yard with them. I couldn’t do it. I couldn’t get off of the sofa. The look on their faces haunted me. After that, I forced myself to do it or I found a way to avoid it. They didn’t need to know so I didn’t tell them.

With my employer and co-workers I couldn’t answer the “How are you feeling?” question without committing career suicide. It may be against the law to discriminate in the workplace against a person with illness but it doesn’t offer much advancement. I had a huge job that other people wanted and a salary that I needed to maintain. So if my Manager said “How are you today?” there was no reason to give it a logical progression to “How are you feeling?”

I lied, I denied. I feel great thank you. I don’t look sick because that’s the point. It’s a whole lot safer than answering like,

“Well thank you for asking. This morning I barely made it to work on time because I was up all night with spasms that no doctor can diagnose. I threw up in the shower this morning and I am wearing a pair of shoes 2 sizes larger than normal because my feet are so swollen I can’t get the others on my feet. I am really fatigued right now for no reason and I am hardly in the mood for your fucking bullshit but here I am…AREN’T YOU GLAD YOU ASKED?”

to be continued

“you don’t look sick”…part 1

I went to my local hospital yesterday morning for some bloodwork. I have a “standing order” for the same tests monthly to monitor my kidney function, or as I call it the “how much have I lost this month” tests. The laboratory waiting room was small and crowded, I swear the room was built as an afterthought. I checked in, surveyed the room, saw a lot of sniffling people and the germaphobe in me chose to stand in the doorway until called.

When called, I trudged through the sea of inconsiderately outstretched legs, carefully dodging the onslaught of germs that I sensed were targeting me as if I had disrupted a wasp’s nest. After my blood was drawn I was led to the door and the Nurse said, for all the waiting room to hear, “ok now head over to Oncology they’re expecting you”. All eyes were on me. As I again navigated the sea of people standing between the door and my exodus an elderly gentleman softly said to his wife,

“he doesn’t look sick”.

I thought about responding but decided against it. Maybe it was the word “Oncology” that threw him, he didn’t know that my iron infusion was administered in the Oncology lab. After I checked in to the Oncology clinic, I sat down and reflected on a similar incident many years ago.

I was treated for Cancer in 1998 at age 31. At that time, I was the proud, doting father of an 18-month-old little girl and my wife was pregnant with my son. I was working full time at the restaurant at night, my days consisted of playing with my daughter and hitting the gym during her morning nap. I was in great shape, the best of my life. I was training for power at the gym, moving a lot of weight for at least 90 minutes a day. One day I was training legs and I attempted a press of 1300 pounds. It was a lot of weight, the kind that requires a guy on each side of the machine to bail you out if your knees pop off and stick to the ceiling. I completed 3 reps, rolled off of the machine and immediately threw up all over the floor. The pain in my core was excruciating. I called my doctor immediately. After I was examined, my doctor asked what my plans for the afternoon were. I told him I was going to work. “Call in sick,” he said and suggested that I call my wife next. I knew it, Cancer.

That nagging pain in my groin was actually a golf-ball sized tumor. It was my favorite, “Lefty”. “Lefty” had to go, regardless of whether it was benign or malignant. My blood work had already indicated that it was malignant. I was asked if I wanted a prosthetic Lefty, I declined. I was married after all, who is going to see? As an aside, I would like to borrow Mr. Peabody’s time machine right about now.

The surgery was scheduled for 10 agonizing days later. To know that you have something inside that is silently trying to kill you and having to wait 10 days to have it removed is torture. I was incredibly aware of it, as if the creature in Alien was planning its moment to pop out of me and wreak havoc. In the meantime, I went to work and acted like everything was just fine. I told one person what was going on, my boss, because I needed to schedule the time off for surgery. He told some people and sure enough, it got out. People started treating me differently. As the kitchen clown, I was a lightning rod for jokes and abuse. My days were always full of banter, it made the day pass. We were all like that. Now, everyone was being so fucking NICE to me I couldn’t take it. I was now the sick guy. People get like that when they hear the “Big C”. There’s nothing they can do and they don’t know what to say. I let them do their thing and I did mine, I deflected it and moved on.

The surgery was successful. And timely. The words “Just in time” were used in conversation. Now in a specimen jar, Lefty was indeed malignant. I would not need chemo, only a long steady regimen of Radiation therapy to my abdominal region.

The Radiation therapy would prove to be a breeze for me. My Oncologist was noticeably shocked at how well I handled it. He would tell me of how patients had to stop treatment due to fatigue and nausea. I was going to the gym and then work after a mere week after my surgery.

Work would prove to be difficult, but not for the reasons you would expect. My strength wasn’t there but I was able to do my job. If they let me. My co-workers, who normally abused me were offering to help me lift things, giving me easier assignments, asking me if I wanted to leave earlier. The worst thing of all is they were being so nice still. No abuse of any kind. I couldn’t take it so one very hot August night I decided to put end this nice stuff.

We were all sweating, it was 95 outside and we were inside a kitchen with 8 ovens, 4 fryolators and 12 saute stations going full tilt. I was sweaty and miserable and I knew I had to pick my moment. I walked into the back kitchen area during a lull and they were all there. I dropped my apron to the floor dramatically and said, “Jesus, I’m sweating my BALL off here!” They erupted in laughter, the tension instantly disappeared. My buddy Joe looks at me and says “so it’s on?”

“Yes, it’s on. Stop tip toeing around me I hate it!”

The abuse was rampant and apparently retroactive. “Billy one-nut” was born. And I loved it, things were back to normal, finally.

One day soon after, as I was leaving the radiation center, I hugged my dear nurses’ goodbye and walked through the waiting room. As I passed an elderly couple, the husband leaned in to the wife and said: “he doesn’t look sick.” I stopped, turned to him and said’ “that’s the idea”.

To be continued…

Friday Knight at Grandpa’s

“Oh my God, it’s like my father is here in this kitchen!” my mother half-laughed and half-yelled as she searched around to see what other mischiefs I had caused while she was out.

I’m a big kid, I love to mess with her OCD. When she goes out I move things around in her kitchen. Sometimes it’s subtle, like moving her snowman candles an inch or so. She notices it. Other times I will switch her containers around. If they were in ascending order shortest to tallest, left to right, I would reverse it. I do a little every day just to keep things interesting. Mom has come to expect something when she walks in. I outdid myself today, I messed with everything. Cookie jar turned around to face the wall. K cups, once color-coded by row on a rack with no empty spaces now rearranged hodge-podge with a pyramid of them on top and many empty slots. The Coffee-maker swapped with the food processor. My best work to date. And the reference to her father was not lost on me, it’s not the first time she’s said it. I act like him, I quote him frequently. I talk about him all the time. I am my Grandfather in so many ways.

My father and grandfather were dual role models in my life. I was very fortunate to have two honest, hard-working family-oriented men in my life. I idolized them both. But I had very different relationships with them. As could be expected, my father had to be the teacher, the establisher of rules and disciplinarian when required. My grandfather got to be the good guy. He always supported what my father told me and never went against him, but he put his own folksy and humorous spin on it. He made everything better. And funny.

I had a tough childhood in many ways. I was a bit mixed up, I lived too much in my own head. But one wonderful childhood memory is the Friday night sleepover at the Grandparents. My mom and dad had a nice social life and it was common to drop me off at the Grandparents house in lieu of a babysitter. I loved it. From as early as I can remember I would walk up the old brick steps. shopping bag of clothes and blanket in tow, where I would be greeted by my doting grandmother at the door. Behind her would be my grandfather smiling wickedly. His eyes, barely noticeable beneath his trademark bushy eyebrows suggesting we were in for some fun. The night would consist of TV and popcorn, playing with their little rat poodle, watching them playfully bicker, root beer floats in the summer and hot chocolate in the winter and going to bed just a little later than I did at home. The fun that my grandfather had in store would come the next morning at breakfast. He would put on a show, and he never disappointed.

Fun, as defined by my grandfather, was causing trouble. My mother had told me stories of the breakfast table when she was growing up. When I was there, my grandmother was the target and I was the eager audience. The game was to drive her crazy, the winning moment was when she yelled at him. It would start as soon as we got up. I woke up early for the show. Grandma would be making breakfast and grandpa and I would be in the small living room, a mere 2 rooms away. She would call him to breakfast and he would ignore her. He would make eye contact with me as if to say “be quiet and watch this.” Grandma would call again and he would yell “Whaaaaat?” Exasperated, my poor grandmother would come down the hall and literally yell “breakfast is ready!” He would calmly say something like “oh, why didn’t you say so.” That was only the beginning. Once seated, the real fun began. She would put eggs in front of him and if they were scrambled he would complain that he wanted over easy. If there was cream on the table he would reach to the refrigerator, sneakily put it away and then ask her where the cream was. He would stack cups on the table to see how high they would go, occasionally knocking something over. All the while he was doing this, smiling wickedly at me, he was watching her carefully to see just how far he could push her. Eventually, she would yell at him to “knock the crap off” and he would be so visibly proud of himself. Amazingly, antics like that happened for years and she never figured out that he was doing it on purpose.

After the shenanigans of breakfast, I would dutifully follow him downstairs. He had a big sink with a mirror and he would shave with a straight razor. After he brushed his face with shaving cream he would catch me admiring him in the mirror and he would wink at me, make a crazy face and pretend he was about to slash his throat with the razor. It didn’t traumatize me, I loved it. I would recap all of his antics, and my poor grandmother’s suffering, to my mother when she picked me up Saturday afternoon. We would compare notes, she would tell me of similar breakfasts, lunches and dinners just like them.

My love for my grandparents would always be strong. They were supportive of me and I made as much time as I could to see them. My grandmother was a strong, willful and sweet woman but she was a tough, off the Mayflower Yankee and was often humorless. She would die at 104 of old age. Her only medical condition was Scottish Alzheimer’s. A condition where you forget everything except who you don’t like. My Grandfather would only see 92. Pneumonia would release some long dormant asbestos he inhaled in the Navy in WWII and take him from us.

He lived a good life. He was a hard-working kid who married his high school sweetheart. Enlisted in the Navy Seabees and fought in the Pacific. He returned home to build a house and start a family with the bride that waited for his return. He would help his wife through 2 miscarriages, the untimely death of his 4-year-old son Charles in the very kitchen that so many happy memories occurred. He carried his family through my mother being in a coma and nearly dying of spinal meningitis when she was 9. Through all of this he smiled, deflected life’s bullets, cracked wise with lines such as “don’t take any wooden nickels”, “see you in the funny papers”, and the classic “I see the light at the end of the tunnel, it’s a goddamn train.”

He’s always with me. My bed is a family heirloom, he was born in it. I carry his pocket watch. I have all of his watches on my nightstand, I also have all of the letters that he sent to my grandmother during WWII. Letters describing his daily life as a sailor, written nearly every day. If not, there was an apology and an explanation. In these letters he tells my grandmother what kind of life he wants to lead with her when, not if, he made it home. He affectionately called her “kid” and he would do so until his final goodbye. They were married 65 years. He was her Knight. http://lindaghill.com/2018/01/28/jusjojan-daily-prompt-january-28th-2018/ Honest, strong, committed to keeping her safe. He would cross the world and slay dragons for her

His humor, his loyalty, his simple approach to life are things that I aspire to have always. I am happy that I still quote him, pull pranks, push people to the edge and do things like openly complain that the brownie pan is defective because it only generated 4 corner pieces. I made that joke last night as I stole the last corner, my mother slapped my wrist and said, “you’re just like your grandfather.” Yup, I’ll take it.

The elephant in the room

It’s time to address https://lindaghill.com/2018/01/26/jusjojan-daily-prompt-january-26th-2018/ the 800-pound elephant in my living room. This Superman shit is getting out of hand. It’s a real thing (obviously, it’s the name of my blog), and it’s getting in my way and clouding my judgment.

There is good Superman. Like the time I was driving my daughter’s friend home. She and my youngest were in the back seat, we were in traffic and when the light turned Green the horns started blaring. Cars started going around the lead car and I realized that the car was stalled. My youngest elbowed her friend and said “watch this’ as I opened my door, in traffic, ran over and helped push the disabled car to the side of the road. After I knew the driver was all set for a tow I got back in the car. I asked my daughter what she had meant by her comment and she said: “I knew you would help that car.” I pointed out to her that no one else did and she said, “Dad, it’s a good thing.”

There have been many of those. I won’t apologize for them. Then there is the “bad” Superman that takes on too much and sacrifices his own health in the process. I have been guilty of that as well. Would you believe me if I told you, and I can’t be more honest than I am at this moment, that I really don’t think about what is good for me? I’m not looking for a cookie like some deadbeat Dad on Springer. I really don’t care what happens to me. The only pleasure I get out of life is helping others.

When my health was deteriorating severely pre-transplant I managed to put up a serious fight. To not worry my kids, to keep my job and continue to support my family I pushed myself too far. My boss praised me, my wife chastised me. Bad Superman was born. I like how it worked out. Denial wasn’t just a river in Egypt, it was a great way to get to the end zone. I found mental strength in the absence of physical.

As I came out of the fog of anesthesia post-transplant, my eyes strained to see a doctor hovering above me. He asked me when I had last worked. I asked what day it was. Tuesday night? I responded that I worked until noon the day before. He asked if I knew the criteria for dialysis (which I stubbornly refused to do). I did not. He informed me that I was ten times over the limit for dialysis and he was amazed that I didn’t have a heart attack. That explained a lot but I didn’t really care, I was alive now right? The doctor left the room shaking his head. He wasn’t impressed. He thought I was just an irresponsible jagoff. He was probably right, but again, it worked for me.

On recovery, I was consumed by the need to get back in shape and pay back the gift I had been given. In that order. I worked out like crazy, I even did P90X. My Transplant surgeon said, “Kidney transplant patients don’t do P90X”. I said, “they do now.” Once I felt good, I began to help other people. I volunteered, I led kid’s mountain bike expeditions. I joined the Freemasons to really put a stamp on my commitment to be a better person and help others. I was a better father, friend, coworker and overall person. I tried to be a better husband, but that ship had sailed already. In the midst of this quest for purity of the soul, I got lazy about my medications and I had a rejection episode. A hospital stay and enough prednisone to kill a stampeding Rosie O’Donnell later I was down about 15% kidney function. Bad Superman. Lesson possibly but not likely learned.

Here and now, in the present, I have found a day that I can’t save. I’ve finally found my true Lex Luthor. My wife. Since we agreed to divorce, she has been noticeably depressed. Her best friend, who my wife famously “picked” over me as her confidante and number one, is telling me that something is wrong with her. While highly tempted to tell her, as the anointed yin to her yang, to fix it herself I am instead terribly worried. Her living situation really does suck. She lives with the best friend, the household is a real disaster. Between the lack of privacy, the new and increasingly frequent arguments with each other (which my wife is completely unequipped to handle), and lack of money she really is slipping into a depression. I saw just how bad it was Wednesday night. At my daughter’s 16th birthday of all places.

Instead of a “sweet 16” party she deserves, with a hundred guests fawning over the wonderful, sweet, caring and amazing girl that I would actually die without, we had a small gathering at the aforementioned house of horrors. I hate it there but I gladly drove 2 hours there. I wouldn’t miss it. My 2 oldest were unable to make it and I walked into a true shit show. My wife was livid, she was fighting with her friend and for some reason barely talking to me. I managed to get her alone for a minute and stupidly asked her if she was ok.

“Fucking great, living the dream.”

I fumbled a bit and then told her that I am used to her not being happy, but I’d never seen her depressed. I told her I was worried about her. She told me that there is nothing that I can do.

We tabled it for the moment and went on to celebrate my daughter’s special day. God bless her, she managed to make the most of it. She’s used to being disappointed I suppose. I showed her the blog post I wrote for her the other night (in confidence). She cried, in a good way. In the absence of material things, I made the gesture of words and she appreciated it. When I left, I gave my wife half of the measly earnings I had made this week. She gave me a weak thank you, a half-assed smile and I left.

“There’s nothing you can do” echoed through my head the entire ride home, haunted me in my sleep and was waiting for me when I awoke. The fact is, there is something that I can do. I can go back to work. It is very likely that I will be offered a full-time position in April. If I get a good enough offer, it may be time to cancel the SSDI claim, take care of myself and hope for the best. I would be able to give my wife enough to get a place of her own, or at least make her situation better. I would be doing something, instead of resigning myself to accepting things the way they are. I just have to determine the cost. It could be up to or in excess of the limitations of my body.

I have known my wife for 29 years. Married for almost 23. She raised four amazing children. Despite some notable wrinkles, she has been a good wife for the entire time. I can’t leave her like this. I know I’m not well. but when has that ever stopped me? As a man of integrity, the right way is the only option and I can’t help but feel that I am not doing all that I can.

Is this the true test of my lack of concern for my own well-being? I know that at least one of you out there is going to agree with this…in order to save others, I have to put my own mask on first.

Dammit Superman, what are you going to do now?

Colour my world

jjj-2018

Dedicated to my beautiful youngest daughter on her 16th birthday

at the low point of my life

with no desire to fight

the weight of a trillion worries

pinning me to the bed

the view from my room

as grey as the day before

the world bereft of beauty

my interest in it fading

bottles, needles

so much goddamn beeping

then you entered the room

my heart began leaping

“Get better Dad, I love you”

you said with a nervous smile

I suddenly felt it

the room suddenly had colour

life was worth living

the difference between color and colour is “U” (you)

https://lindaghill.com/2018/01/23/jusjojan-daily-prompt-january-23rd-2018/