Category: Uncategorized

I’m fine, move on

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

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

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

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

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

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

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

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

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

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

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

Do it now…conclusion

After getting a small but desperately needed amount of sleep at the Fleabag motel that charged me the reasonable rate of $202.00 for one night I rejoined my compadres at their motel. I was just in time for breakfast. When I went to the lobby of the restaurant I found my boys talking to a guy I didn’t know. It was Pete, who had driven up that morning to meet the others, apparently he was a regular part of the group. I liked him immediately although I suspected even then that he would be bunking with us that night and add to the cacophony. But I was too hungry to worry about that then.

After a huge breakfast we walked to the event du jour, the Adirondack Car Show. We weren’t the only ones, the sidewalks were mobbed with people heading the same way.

I was tired, full and probably in need of dialysis but I was as giddy as Michael Jackson watching the Little League World Series. As we went through the gate we were greeted by a wall of vendors selling anything car-related. Beyond that area I could see a ocean of glittering cars. I was in my element, although nostalgic over how I wish my Dad was with me. He loved car shows and he would have loved this one.

The fairground was set up with no particular system. I imagine that the first ones there got the best spots. Classics, Rat Rods, both original and modified muscle, trucks ranging from the 30’s to the 70’s all mingled in perfect harmony. I was immediately struck by how the owners stood by their cars or sat in lawn chairs waiting impatiently for someone to talk about their cars. I am friends with a lot of car guys and I know the labor of love these cars can be in the restoration and preservation process. I was their dream, I talked to everyone. I also got to watch Charlie number 2 reveal his knowledge. The man was a guru of automotive knowledge. I learned a lot by just listening.

Charlie 2

After we checked out everything Charlie said let’s go to the top level. I didn’t even know there was a top level. Turns out there were 2. After more walking than I was really capable of we arrived at Carvana. Wow. As it turns out, the top is where the good stuff was. The higher pedigree cars, ones whose lineage could be traced for authenticity and originality and were extremely valuable. Mustangs, GTO’s Malibu’s, Nova’s, Impala’s and a few oddities just called out to me. Eventually Charlie and I reconnected with Charlie 1 and Pete and had a beer in the shade. It was old hat for them, I was blown away. I like cars in case you haven’t noticed. I also like people and there were so many cool ones to talk to. Including this guy…

Image may contain: 2 people, including Bill McIntire, people smiling, car and outdoor

Once we had talked to almost everyone there (or so it seemed) we went to the shore of Lake George which was at the edge of the fairground and had a late lunch. I was tired. Real tired. But the food was great and the view was better. After, we began the long walk back to motel.

I was done at that point and when talk arose about going back to the pier for appetizers and drinks I politely declined and went back to the room. I had 4 hours to myself but sleep eluded me. I was briefly interrupted when Rick came in and packed his stuff. He got a call from the wife and needed to leave. We said our goodbyes and as he roared off it occurred to me that I may have one bed to myself in his absence. I would later find out that Pete would fill that vacancy. When the guys came back, shitfaced, they all inquired if I got any sleep. They were surprised. 8 hours later when they all arose from another fart/snore fest they were again surprised to find that I had been up all night. Again. I myself was not surprised.

We set out after breakfast for the 200 mile ride home. We lost Pete and Charlie 2 halfway down and at the end it was just Charlie 1 and I. Soon it was just me.

I had time to reflect on the way home. I had done something normal. Nobody talked about dialysis even though they all knew. I had made friends. I had experienced life. I had taken risks and reaped rewards. I had created memories.

All because I said YES.

What may have been an annual event for them was a very big deal for me. While no one has any guarantees for a tomorrow, I have less odds than many. I needed to say yes, not “maybe tomorrow”, or “maybe later”. Life is happening all around me. When an opportunity arises…DO IT NOW.

It’s worse at night

It’s worse at night. But lately the days aren’t any easier.

The endless streams of FB posts of friends and family thriving in life. I watch them celebrate milestones, drinks and dinners with giant smiles on their faces. I am happy for them, I really am but it inevitable comes back to me as a reflection of my own situation.

I’ve been to two weddings recently where my only takeaway was “I wish I had that.”

2 years ago I thought I had lost everything. By all accounts I did. The only thing to survive the toppling of my entire former existence was my optimism. I had a resilient and omnipresent ability to look at my situation as a phase that would inevitably get better. After all, it has to doesn’t it?

It hasn’t. With the exception of a fleeting romance, it has all been going downhill emotionally and physically. That romance was a blessing. She was exciting, vibrant, sexually charged and above all it gave me hope. There was hope that we would bridge the distance and be together. I saw it as a new beginning, a chance at happiness. A beam of sunlight piercing the clouds of my every day existence.

For months I found excitement in the constant texts and phone calls. I found solace in our similarities and embraced our differences. I felt excited, giddy, loved, wanted, desired. I felt like I had a purpose again. I came to believe that we would be together one day.

Then it started to fade. She got sick. Plans changed. She was no longer willing to pick up everything and make a change. With me. Still. I remained emotionally invested. I loved her. She was my happily ever after. A shiny and sharp sword to fight my battles with. She gave me hope.

This morning I saw on my FB feed a picture of a guy on her page. The post was titled “This is love.”

A heads up would have been nice.

I suppose it wasn’t enough that I feel sick all the time. That I am lacking purpose. That I am uncontrollably envious at the happy people all around my island of solitude. That I am out of work, broke and dealing with the social stigma of living in my mother’s basement. I’ve now hit for the cycle and I get to add heartbroken to the mix.

It’s an act after all. To portray oneself as a Phoenix rising from the ashes when in reality you feel like just another burning ember that will eventually die out and end in obscurity.

I really need something positive to happen in my life right now. I’m not sure how many more hits I can take before I finally decide it’s not worth fighting anymore. I’m not sure how many more nights I can lie awake writing my own obituary in my head, wondering if the people in my life would understand if one day I just wasn’t around anymore.

Is this really as good as it gets?

Do it now…Day 2

On day 2, as the farters and snorers began to stir at about 7 AM, I found myself with a decision to make. Do I haul my sleepless ass out of bed and risk major personal injury or illness and go on the ride and get out of the trip what I had hoped or puss out and stay at the motel?

You can catch up here and here.

I chose to go with the guys and make some memories.

After breakfast we put on our gear, warmed up the bikes and headed up Rte 9N, a beautiful scenic road that would take us through our little corner of NY and into the farmlands of VT. The first stretch of road was a long climb followed by a hair-raising downhill full of treacherous curves. My riding buddies were going too fast around the corners for my taste so I took my time. When I came to the bottom I found them at a rest stop taking off their helmets. We socialized with each other, I was still getting to know them and we mingled with other travelers as they pulled in as well. The stop was on Lake George and were all getting pictures when an enormous Military Transport Jet appeared over the lake and gave us a show at not even 1000 feet over the hard deck. It was quite a sight. We buzzed about that for a while and then started traveling again.

The next stop was Fort Ticonderoga, a major landmark which I had never seen before. Then, an hour later we came to Lake Champlain and took a ferry across the lake into VT. I was wiped and found myself sitting on the hard concrete floor of the ferry next to my bike, enjoying the scenery. 30 minutes later we were in VT.

We spent the next 3 hours driving through the most beautiful countryside I have ever seen. Under the canopy of a cloudless sky we weaved through farm country as far as the eye could see. There were barely any cars, quite a few bikes and no people. We stopped for lunch at a cute and very busy roadside burger joint and I slurped down 2 cokes to stay awake. We discussed our route and the boys decided that it would be best for me in my present condition to shave a little off of the trip to give me a break . I was grateful. We soon grabbed the ferry at a different spot and re-crossed Lake Champlain.

The remainder of the ride was challenging. Charlie number 2 and Rick took off when we got to the highway and Charlie and I didn’t want to drive 100 miles per hour so we lost them (or vice versa). We rode 80 miles of highway so remote that the only traffic was trucks hauling grain, feed and oil. We then found Rte 9N again and made our way back. We never did reconnect with Speed Racers 1 and 2 so we took our time. We got back to the hotel just as it turned dark. We went to the bar and sure enough, there they were. We chatted for a while about our 320 total miles and the highlights that we saw but I was fading fast. I decided that I was going to find a motel room in the 5 mile strip of completely booked rooms and get some sleep. At that point I felt as if my life depended on it.

I went to Trivago and found one. It was right down the street and only 92 bucks! I immediately booked the room, told the fellas not to be offended but I needed sleep, and set out. The boardwalk of madness ensured that my 1 mile commute would take 30 minutes but I made it. I went in to find that I had booked for the following week. I asked the cute little Asian attendant if there was anything available. There was, a double at twice the cost. I handed over my credit card and said I’ll take it. Fuck it.

I couldn’t sleep at first. But somehow I scraped out 6 hours and before I knew it I was checking out and meeting the boys for breakfast. Today was to be a bit of a break. We were parking the bikes and walking to the car show.

I welcomed the respite.

To be continued...

Do it now…cont’d

I pulled into a gas station in Meredith, NH at exactly 12:30. You can catch part 1 here btw. Charlie wasn’t there yet so I went inside and bought some essentials to offset my sleepless night. 2 cokes and a Snickers. A sugar high was what the doctor ordered. When I came out, Charlie was waiting for me. We briefly discussed the route, 220 miles to Lake George with a stop to meet the other 2 guys who were coming from MA. We then took off.

The ride was beautiful. The sun was out and there wasn’t a cloud in the sky. We whipped and weaved through the winding roads of Western NH into VT. Through our frequent stops, a virtual comedy played out as our compadres continued to fail to meet us at arranged stops. They were lost, despite having done this ride 10 years in a row. We finally met up in Killington, at a gas station where I first met Charlie (another Charlie) and Rick. I liked them immediately. We took off for the last 80 miles of our journey.

We stopped for dinner at a diner in the Adirondacks. As soon as we got there it became clear that they knew everyone there. A complimentary round of beers came to the table. I gave mine away and asked for a coffee. I was dead dog tired and fading fast.

The last leg of the trip was cold and a bit white-knuckle. My crew was more experienced than I and were going too fast for me on the dark roads. I barely kept up with them. My nerves were frazzled after almost 6 hours on the road.

When we finally got to the Village of Lake George it was evident that we had arrived at the party. The streets were full of classic cars, muscle and vintage, Street Rods, Rat rods, you name it. The streets were lined with people in lawn chairs cheering on the cars as they drove the strip in a loop. Apparently, the village issues a temporary permit for Thursday through Sunday for all the cars, street legal or not, to cruise the one strip and drive like maniacs if they want. The police just stand there and watch. I had never seen anything like it as we negotiated the bikes through the crowd blocking the motel entrance. I was overwhelmed.

We checked in and I was less than thrilled to find out that the four of us were sharing two beds. I am a terrible sleeper and was not looking forward to sleeping with another guy. I shook it off, hoping that a couple of drinks would knock me out enough to override what I suspected was going to be a massive snore/fart fest. We went to the bar.

It was like Cheers the TV show for these guys. They knew everyone and everyone knew them. Several rounds of drinks showed up at our table and I imbibed a little. We went back to the room and everyone passed out in their clothes. It was exactly the snore/fart fest that I thought it would be. I was up all night. I knew I was in trouble.

After breakfast I asked what the plan was. The plan was to do about 300 miles of beautiful riding through NY and VT. I had a decision to make. Do I take a chance and do the ride on no sleep in 2 days and risk getting real sick or do I puss out and stay at the hotel? They knew my situation and said they would understand if I couldn’t make it.

I thought about it for a while and decided that I would definitely regret not going. I had made it this far, I was going to experience all of it regardless of the cost. I showered and packed for what was going to be a really long day.

to be continued…

Do it now

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

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

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

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

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

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

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

to be continued…

the reminders are everywhere

Last night I came home exhausted. Sometimes dialysis leaves me a crampy, washed out mess. Yesterday was one of those days. My sofa was calling my name. But it was not to be. Mom needed help.

We have contractors coming Saturday morning to rip the roof off of our garage and they needed us to get all of the junk in the upstairs of the garage moved to the back. It’s a project I’ve been planning but I was putting it off until the fall because in August the attic of the garage is blistering hot. I wasn’t about to make mom do it alone so I sucked it up and headed up.

It was hot. Africa hot. After a few minutes I was dripping. Ten sweaty, swamp-ass minutes later I was down to two unmarked cardboard boxes. I went over to them, dragged them from the overhang and opened them. They contained Dad’s miniature truck collection.

Dad drove a truck for 35 years. Retail home oil delivery. Over the road Gasoline hauling. He could legally drive anything with wheels. He loved trucks. By extension I did also. By the time I was 12 I could name any truck by name, model and approximate year by the headlights alone (still can). It wasn’t enough that he spent 60-65 hours a week driving, he also had to have his den covered with replicas of 18 wheelers with Wal-Mart, Harley Davidson, etc. markings. Dump trucks, concrete mixers, you name it he had it. Until he passed and my mom put them in storage. I had forgotten about them.

Many years ago Dad gave me some model trucks as presents. I brought them to work with me but they never had a proper place so they sat in the corner of my office in their boxes. When he passed in 2013 I broke down and bought a large bookcase for my office. I dedicated 2 large shelves to mementos of him. The trucks, a collectible baseball that he bought for me, a portrait of him and a license plate from 1929 that I found in my Grandfather’s garage. It was on his first car.

When people came in my office they were naturally drawn to my homemade shrine. It afforded me the opportunity to talk about my dad. Of course, its primary purpose was to inspire me when I was down. He taught me to work hard. To act with integrity. To always do what I say and do it well. To be a man that takes pride in what he does.

They look like just trucks. But they represent so much more to me. Hard work, dedication and pride. He may have been only a truck driver but he was the only one in his family to pull himself out of abject poverty and make something out of himself. And he did it by learning a skill, dedicating his life to it and raising his family through his efforts.

I will spend the day Sunday finding a place to display them again. I miss him more than words can ever express, but there is never a moment when I see a truck, real or model, that I don’t think of him.

the waiting room

If the sun is out I take the motorcycle to Dialysis. If I have to be there then I’m going to arrive and depart with a smile on my face.

Most days I spring out of my chair, exit to the waiting area, grab my helmet and go. Sometimes there are people in the waiting room, waiting to pick up a patient. I know most of them and who they are waiting for. For the last 2 weeks there has been a new face, a woman, 70ish with a kind face, that I deduced was waiting for the new patient Bob. Bob is a 70ish ‘Nam vet who just started treatments. I’d never spoken to him but he looks like a nice guy, with a new unpleasant development in his life.

Today, as I exited the clinic and grabbed my helmet she spoke to me.
“Can I tell you that you’re amazing?”
“Amazing? Hardly. But thank for you for saying that. And while we’re on the subject, why exactly am I amazing?” I replied.
“You bounce out of here, helmet in hand and ride a motorcycle out of here. After Dialysis. I don’t know how you do it.”
“I have to”, I replied. “It’s the only way I can make it tolerable.” I sat down across from her.
“I see Bob wears a lot of Harley stuff, is he still able to ride?”
“No.” I had touched a nerve. “He can’t support the weight of the bike anymore because of…”she motioned towards the clinic door, “this”.
“I get it.” I replied. “This is tough”.
“Not on you. If it is you don’t act it.”
I explained to her that it is quite to the contrary. That I have a tough time with it sometimes but I put on a strong face and do my best to make the most of when I feel good. She politely nodded as I talked, looking down at the floor.
I asked her how Bob was handling it. She told me he is feeling pretty lousy but getting used to it. I found that to be a good time to tell her that I was the clinic’s Patient Advocate and offered to talk anytime she or Bob may want.

At that moment Bob came through the door. His wife immediately said “This is Bill. He’s the one with the Bike. “
“Hey, Bill. Nice to meet you.” Bob wearily sat down in the chair. “Nice bike.”
“Thanks”, I replied.
“Bob”, his wife spoke up. “Bill is the Patient Advocate for the clinic.”
He looked at me and said “What do you do?”
“I’m here if you need advice, recommendations about the dialysis process or just here to talk if you need it.”
“Talk about what?”
“About Dialysis. About the emotions you will feel and the aches and pains you will experience. We all go through it.”
His facial expression showed total resistance. Then, before my eyes it changed. “Maybe I’ll take you up on it sometime.”

We walked out. He checked out my bike. I was careful not to ask him about riding. He then surprised me. “I’m thinking of getting a trike. I don’t have to worry about supporting the weight.. I can still ride that way.”
“That sounds awesome, Bob. The more you keep doing what you love, the less sick you feel.” I winked at his wife. She smiled.

I watched as they got into their car. She drove. As they pulled out she mouthed the words “Thank you” to me.

I’m not sure I did anything remarkable, I just shared the best kept non-secret I have. Illness only wins when you allow it to. Keep living your life.

the flight of purpose

I sat on the deck this afternoon, enjoying the earthy smells of the woods following a rainstorm. The clouds were moving, chased away by the warming sun. I lit a cigar.

Then, interrupting my distracted gaze it appeared. It was a Monarch Butterfly, magnificent in its carefree romp around my yard. It zigged and it zagged, dipped and climbed but it always looked so easy. Dare I say carefree?

It seems to fly without a care, but I don’t think so. It has already endured so much, survived such a remarkable transition. It is not carefree. It is accomplished, full of purpose.

To live every moment of its short life.

Does its life span feel as long as mine? What if…he knows that he will die soon and is working against the clock to see and do as much as possible?

I can relate. Been there.

I am also looking at a short life. I crave fulfillment and fear lack of accomplishment. I have also been through a difficult transition and emerged a new me. I can’t sit still for very long because I am reminded that moments are few and not guaranteed and I get off the sofa.

The Monarch saw me waving to it, beckoning it to rest on my arm. He chose to keep flying and exploring. He had places to go. Resting on my arm would be a sofa in its own right.

Per usual, inspiration can be found in the smallest of things.

the lucky hat

“Did you get that at Fenway?”
Startled from my apparent trance I turned to the kind-faced gentleman behind me in line at the market and recognized that he was referring to my hat. My favorite hat, the Red Sox Scali Cap. “Yes I did, actually” I replied.

“Bet that set you back a few bucks” he said

“Yea, but it was worth it. It’s my good will hat. Besides, it hides my chrome dome” and for effect I took it off and gestured self-deprecatingly at my bald head. He laughed and I then realized it was time to pay the clearly annoyed cashier who obviously had much better places to be today. I paid and walked out.

As I walked to my car I reflected on how NH life was growing on me but I’m still taken off of my game when someone just initiates friendly conversation. While I am a big fan of it I come from an area where people will generally read a candy bar wrapper to avoid eye contact. Enjoying that brief exchange with a friendly stranger, I opened my car to put my groceries in.

“What did you mean by Good Will hat? I thought you said you bought it at Fenway?” My friend from line was parked next to me. He thought I bought it at a GoodWill store.

I told him the Chili’s story.

Many years ago I was at Chili’s restaurant knocking back a few with my buddy Chuck. I liked the bar a lot and I really liked the bartender. Jane was a slightly heavy, forty-ish woman who was a refreshing change from the usual younger, vapid bartenders that flashed cleavage for tips but had little personality. Don’t get me wrong, I love tits but I’m old fashioned and like to have a bartender I can talk to also. I was wearing my hat. Jane was obsessed with my hat. She also had asked me if I had bought it at Fenway. She kept telling me how good I looked in it and I kept telling her to stop hustling for tips. She laughed. Then she told me how much her brother would love a hat like mine.

Over the course of several more beers Jane told Chuck and I of her brother in VT. He was dying of stage 4 prostate cancer. She wanted to get him something to cheer him up. She got a little emotional as she talked of him. The subject was changed.

When I paid my bill, I put the money inside my hat and left it on the bar. When she came over I slid the hat across the bar and told her to give it to her brother. She teared up and I tore out of there. No drama for me that night. Chuck slapped me on the back and told me what a nice gesture that was. Not to be immodest, but I do stuff like that pretty often. If I see a chance to make someone smile, unless I’m really attached to something I will usually give it away,

The next day I saw my buddy Steve on the street. He asked me where my hat was. Unbelievable. I told him the story and he also thought it was great.

2 weeks later I heard a knock on my door and when I opened it there stood Steve with a new hat. “For you” he said. “I was at the game last night, saw this and had to get it for you. You paid it forward and now I am too. Besides, you need to cover that bald head.”

When I finished telling my supermarket friend the story he was full of smiles. ” All of that from one hat, huh?”

“Yup, and every time I wear it I am reminded to spread some good will. Small gestures my friend”.

As we parted ways I jokingly remarked ” do you want it?” He laughed and got in his car.

Small gestures can mean the world to someone.