Time to tell a different story

What do you do with a blog that is based on a part of your life that is now in the past? That is to say, I started this blog 7 years ago to “put out there” my story. it was quite a story. It began as a lamentation of a life that crashed and burned all around me, my reconciliation with my new situation, the battle against an insidious enemy, in this case illness, some thinly veiled autobiographical fiction concluded by a triumphant victory as I beat my illness and began reclaiming my life. It must have been a good story because I had a lot of readers. Many were encouraged, perhaps even inspired by my story. I know this because they told me so.

Then I got better. I told the story of my 2nd Transplant and the incredible series of events that led to it. I told the tale of my recovery and all that went into it. Then I lost you. Almost all of you. I still have some faithful readers and I would never minimize them and their kind interactions, but clearly I lost something.

Perhaps it’s the medium of blogging that is losing interest. Podcasts seem to be all the rage now. But it’s more likely that I had lost my edge and my story did as well.

This blog, to this point, only tells half of my actual story. What I have been reluctant to tell is what I have done since reclaiming my health. My goal all along was to get my life back. You all first met me when I was broke, sick and living in mom’s basement. I was divorced, angry, resentful, sad, heartbroken and far from those people and places that used to be my life. My period of illness was going to be one of two things. That period leading up to my eventual demise or the chapter before this one. The first could have happened but didn’t. Life gave it a hell of a try, but I lived. The second one is right now. This is the chapter in which I get it all back and more.

I want to tell you THAT story. And I want to do it like Superman, my former alter-ego did. With total transparency and in-your-face brutal honesty.

I’m here to tell you that the Sick guy is gone. Wait til you see what the Healthy guy has been up to.

A voyeur of my own life

I’m not depressed. Really I’m not. Maybe if I say it enough times then I’ll believe it.
Who am I kidding? If it is or isn’t, this is just what I do.
I isolate. It’s better for me if I acknowledge that I don’t have the stamina that I used to. I’m disabled, maybe I should admit it. When you’re disabled you have to remind yourself that you only have so much in you each day and when you’re tired, then go with it. Lately I’ve been embracing that notion, to perhaps an unhealthy level.

But people are worrying about me. They don’t understand what I’m trying to do. I’m doing a reset. Truth is, I like being alone.
I do my best thinking. I save money. By avoiding people I avoid piquing my anxiety, which is running roughshod over my weak ass lately. I’m safe in my little space. Not safe like a little Gen Z snowflake afraid to get his feelings hurt, just safe from encountering extra stimuli that is going to serve as the proverbial straw that broke the Camel’s back. That’s why I isolate. There is nothing that says that I have to be out there doing stuff all the time. It’s ok to spend time alone.
Did I mention that I was never like that before this year?
It’s true. This is very new. I used to be the guy that needed to be around people all of the time. I suppose that’s before people in my life started letting me down, or just the day that I noticed a lack of equity in my relationships. Equity is a nice way of saying that I’m tired of giving more than I’m capable of and getting the minimum monthly payment back. Disclaimer, I do have some very good friends. But there are a couple that hurt me recently and I’m not going to lie, it stings. It’s causing me to reevaluate how much I give of myself to those that don’t deserve it. While I’ll never pull it off, I’m tempted to dump my trademark “be kind” and not be so fucking nice all of the time. You can be a good person without being a punching bag. Fuck the high road, and fuck anyone that did me dirty.

I have thought a lot about my isolation recently. I have been forcing myself to go out and do something each day, no matter how small. Last night I decided to take the bike out. It was a hot day but by 7 it cooled enough and it was perfect riding weather. I could have called several friends, any one of who would have joined me but I went alone. I drove to a lake and sat at the edge looking at nothing and everything like a first year Philosophy student. Other than some serenity, I didn’t feel much of anything.

Therein lies the problem. I don’t feel anything anymore. Until very recently I was basking in that post-transplant glow. Full of promise, a new lease, the ability to do things that once appeared to be unavailable. Now, I’m joyless. I don’t feel things like I should. I spend my TV time watching Documentaries on subjects that irritate me, made by people I don’t like or respect. I watch indie dramedies in search of that amazing love story that rips my fucking heart out, because I don’t have that but I want to FEEL IT! I’m challenging my entire paradigm to figure out why I am a voyeur in my own goddamn life.

How can I be a spectator of my own life?

Legacy?

I was recently asked how do I want to be remembered? What an incredibly timely and often thought-about topic.

See, I am all about Legacy. I live my life every day in such a way that should I not wake up the next day, I hope that I will be remembered fondly. I leave each person in my life in such a way that should it be the last time we see each other, that memory would be good and not a regret.

Having said that, I am not living to die. If you knew my medical history, and how truly close I have come (several times) to dying from a chronic illness and related episodes, then it would make more sense. But I, more than most people, really don’t have a lot of time left and I can justify such a mentality. I want to build a legacy, and perhaps most importantly, I want to do it by changing the world, my world, one charitable of kind transaction at a time.

Let’s get this out of the way right away. I don’t want to be remembered in a lofty way. I don’t care for people to be in awe of honors, accolades, and accumulated wealth. I have earned very few honors, I hate accolades, and I am poor and expect to be until that day comes. 

Here’s what I want. I hope that when I die, my son will honor my request to give me a casual service and an open bar. At that bar, I most desire that a glass would be raised to my character. I hope that my friends and acquaintances will remember me as a good guy, a charitable soul and that I made a difference to somebody. Then I want people to share stories of the weirdest/funniest/most awkward/stupid/embarrassing thing that I did or said in front of them.

See, I haven’t had much luck laughing at myself in my life. But I have no problem with others doing it for me. As long as their memories of me make them smile.

Everything must go

I’ve been struggling lately. I am reluctant to say that I have been sad, but I have been isolating more than usual and feel like I’m searching for something. Despite my lack of physical activity this past week, the mental energy expended was triathlon level. I have been evaluating everything, challenging my own viewpoints and beliefs, and wondering why someone with such a fulfilling life can feel such despair.
I sought the advice of a friend, which is hard for me because I don’t tend to share the very personal with people. I tend to laugh off, minimize and generally suppress that which gnaws at me. To my amazement, after hearing about my funk, he asked me if I ever properly processed the difficult events in my life.
I scoffed at him, it’s what I do.
He was ready for that. He knew that was what I do. So I thought about it, and I wasn’t happy with what I came up with. I may have handled the situation(s) but I never dealt with them.

Yes, those who know me may assume that the myriad of health problems that I have experienced would be the most traumatic experiences of my life. They would be wrong. Health is easy to deal with. With illness, it may take a while but you deal with it. You accept it, if you’re smart you will follow directions and maybe change some habits, and leave the rest up to fate. You either live or you don’t, the very “out of ones hands” nature of illness makes it that simple. The only obstacle is pain, but you get used to that as well.
What I never dealt with is the emotional trauma, which goes way back, of everything from the bullying in school to my failed marriage and everything in between. It was a nice revelation but I am clueless to how to act on it.

Enter one of the things that I do like about myself, my persistent tendency to always be on the lookout for a sign. I believe in signs. It is my belief that the universe communicates with those in tune through signs. I actively look for them everywhere and in everything; by studying my surroundings with an open mind and heart, in my choice of shows or movies, even in interactions with others. I have been inspired by the smallest of things and in the most unlikely of places. Today, I found great inspiration and even some answers in a Will Ferrell movie, of all things.

Everthing Must Go is a sleeper movie that slipped under the mainstream but caught the attention of a few respected movie critics. It is the rare Drama done by a comedian considered to be out of his depth that surprises you. Not unlike Reign Over Me with Adam Sandler and Moscow on the Hudson with Robin Williams. Of course, Robin Williams would go on to be a respected dramatic actor but you get the point.
In Everything Must Go, the main character loses his job and marriage on the same day. Both due to his chronic alcoholism. He returns to his house to find all of his belongings in the front yard, door locks changed and his bank accounts frozen. With no funds or other means to do anything, he chooses to live with all of his belongings in his front yard. In the ensuing days he endures a crash course in confronting the issues of his life. As expected, what unfolded was a painful emotional roller coaster. One that I related to almost to the point of tears.
He was forced to deal with his alcoholism, his choices, his accountability for his role in the failure of his marriage and career, and I was held in rapt attention. The familiarity was staggering. The impact of alcohol on his life was particularly poignant. The failure of his marriage was downright painful. All of it was just too close to home. And it proved to me that my friend was SPOT ON correct that I never dealt with my marriage, my choices, my place in life and my deeply repressed emotions on ALL of it.
Watching the movie unfold, I felt the despair, the frustration, the longing, the pain as if it was my own. And like my life, the story did not have a happy ending. Yes, I know my life is not over but I’m not expecting great things in the future.
The only positive takeaway I have is that it was a movie. I still have time, not to recover that which was lost, but to finally deal with the trauma of my past. It’s critical to mention here that my use of the word “trauma” is a rarity. I tend to downplay, even be derisive, of people who use the word. But it’s time that I face up to it, finally.
Being minimized at work and home, being forced to tolerate rampant abuse by employers who knew that I needed the job and could do nothing about it, being a mere roommate to my wife, and then finally having the chewed-up carcass of what was left of my life spit out by chronic illness nearly destroyed me.
That is trauma. The fact that I am still standing notwithstanding, it needs to be dealt with.

I may have to focus on that for a while.

My room the sanctuary

I don’t know if I’m on a quest for substance or just profoundly depressed. While on paper there would appear to be no possible similarities between the two, with me they can easily be mistaken for each other.

I get depressed. But I don’t get sad. Yes, I know it’s a false equivalency; Depression isn’t always characterized by sadness. It’s detachment, apathy, lack of interest, isolating. There are times that I experience all of that. It’s a problem that I need to deal with at some point.
When I am on a quest for substance, it means that I am unsatisfied with something in my life. One would think it would be an easy fix, identify the issue and work on it, right?
Not always. Things are never that easy with me. If that is what is happening; I don’t know what it is that is bothering me, what I feel I am lacking, or even in what direction to look.
Having taken a deep dive on all of it, the best I can come up with is that it is a combination of both.

I am definitely depressed. And again, not sad. I just don’t give a fuck about things that I usually care greatly about. I love my family and friends but I don’t answer the phone when they call me. I may text some of them back. They want to know where I’ve been, why I missed meetings that I am always at (with joy I might add). They want to know if I’m ok. I tell them I’m fine, they know I’m lying and I’m making them feel bad for me. And I hate that. It would probably help me to talk about it, what little I understand of my behavior, but I refuse to pull them in.
I’ve been lying to everyone about how I am for years, why stop now?

There’s something to be said for the quest for substance also. Yes, I have been in my loft, with the exception of the rare times that I have to go out, and I have been watching a LOT of television. But here’s the caveat, I’m not watching reruns or just anything, but instead I am combing the streaming channels with a purpose. I am looking for that great movie that I’ve always wanted to watch, selecting titles and topics that I know will challenge my paradigm , even documentaries on controversial subjects created by controversial people. I watched Moscow on the Hudson because I knew that it was a beautiful take on Immigration and the American dream. I streamed Bowling for Columbine because I needed to see the other side (not my 2A stance) on the Gun Violence debate.
All in the interest of challenging myself. I actually like what I’m doing, just now how I’m doing it. But underneath it all, I know that I’m trying to improve myself and that cannot be a bad thing in my book.

Still, it needs to stop. I have a great life and there is no reason to be down. I have a great family, tons of friends, groups and activities that I enjoy, there are people that actually are counting on me. I like that as well as need it. It gives my life value. So what’s my problem?

I’m going out tomorrow. No matter what. I’m going somewhere and doing something with someone. If I can’t do that then I need to Google some therapists. Don’t think I haven’t thought about that as well.

something has got to give

Right now I should be at an event at the Shriners. I had every intention of going but I didn’t.
Last night I had every intention of going to another event. In fact, I was dressed and ready to go. Then I couldn’t find my keys. I had a complete meltdown as I frantically searched high and low for them. I exaggerate not one bit when I tell you that I tore my loft and most of the kitchen, the place I had last seen them (and where they were eventually recovered) apart in a complete panic.
My roommate’s girl found them for me, but by then it was too late for me to go to my thing.
I realized today that I am actually glad that I didn’t go, I would even go so far as to venture a guess that I may have mentally sabotaged myself. I didn’t want to go. In fact, I don’t want to do fucking anything lately.

I thought I was just being lazy. I have those moments. To listen to my doctors, friends and family tell it, I am busy enough most of the time that I should allow myself those days, as they remind me that I am after all disabled and can cut myself some slack. But I haven’t left my room, except for the food shopping I did yesterday that led to my lost keys. Other than that I have been isolating.

Isolation is not entirely new to me. I do it once in a while. I have been doing it more lately, I must admit. But it’s getting more intense; one new development this week has been my ignoring almost all phone calls, family excluded. In addition to not wanting to do anything, I don’t want to talk to anyone either. And some of those people are starting to notice and are concerned about me. But I won’t discuss it with them because I don’t want them to worry about me. I want to talk to someone about it but that, for sure, would make people worry about me.

I don’t like this. If for no other reason, it doesn’t make sense. I have a good life. I am in good health. I have been to fucking HELL and BACK and I came out on top. I thumbed my nose at my mortality and I am doing everything that I once thought was lost to me. I even have a female companion. That is an area of my life that caused me great anxiety, worry and heartbreak.

I also have to ask, why did I have the overwhelming urge to end my life last week? Out of nowhere, while with family of all things, I suddenly didn’t care if I lived or died. I didn’t make any plans, or pick a means or a place, and I didn’t write a note, but I couldn’t have given less of a fuck if an asteroid hit the house I was in at that moment.

And then, just like that it went away. I am not in a good mood, but I scoff at the thoughts that racked my head last week. That depressive episode has morphed, deescalated perhaps, into a shameful state of apathy. I am a lot of things but apathetic is not one of them. Yet, here I sit, marveling at the effort it required just to write this blog.

Something has got to give. And soon.

Dad talk

I was recently asked what my Dad was like when I was younger.

I love talking about my Dad. In fact, I visited him yesterday. I talked a lot, in fact, I did all the talking. Primarily, because he can’t hear me through 6 feet of dirt and a Veteran’s Grave marker. He may have died 10 1/2 years ago but not a day goes by that I don’t think of him. 

One of the things I remember most about my Dad was a conversation we had towards the end of his life. As Parkinson’s ravaged his body, transforming him into a shadow of the mighty Oak he once was, he became briefly interested in his legacy. He didn’t have much regard for how people felt about him and he wasn’t a man with many regrets, but he was concerned about how he was as a Dad. I was shocked when he brought it up.

“Do you resent me for being out of the house so much”?

I had never really thought of it. He worked all the time. Side jobs, overtime, helping my Grandfather. “Out” wasn’t out with the boys or time spent on himself. It was work. Other than that he was home being a great Dad. And, it wasn’t as if I had a reference point to compare his time home to others. All of my friends’ Dads worked, most of them a lot. I always thought that’s how it was supposed to be, the parents provide so the kids can thrive.

“Not at all, Dad”, I replied. “I didn’t resent you ever, about anything. I admired your work ethic and I always looked to you with pride for your accomplishments.”

A tear formed in the corner of his eye. He caught my reference. I was reminding him of something he thought about every day of his life, his upbringing. My Dad came from very humble beginnings. He lived in the poorest section of town, one of 4 kids. Of he and his multiple cousins, Dad was the one with the work ethic, the good eyesight and the desire to do better. I mention eyesight because it has been theorized that my Dad was the product of an affair. His entire family wore thick glasses, Dad could spot a feather out of place on a Hawk’s tail at 2000 feet. Dad was also the only one to make something of himself. He joined the military, learned a skill, joined a Union, bought a house. Instead of being happy for him, he was chided by his family as the “Rich one”. To them, Middle Class was rich. Me, I was the “Rich Kid”. I hated them for that. I developed a “fuck’em” attitude early on.

So, knowing all of this, I never had a problem with his hard work. It was all for us.

But the real matter at hand here is what was my Dad like when he WAS home. The answer is simultaneously simple and complex. He tried too hard, because someone in his life didn’t try hard enough. He had very high expectations for me, but he forced a lot of them on me because he never had the opportunities I had. He wanted to be an amazing father and husband, but he put on metaphorical “hats” (Hubby hat, Dad hat, Neighbor hat, etc) and in the process denied himself some of the more genuine moments of family life because he couldn’t just relax and be himself. Those moments were rare but so very special.

I am not a revisionist historian. I don’t paint the past pretty colors in an attempt to make it more palatable. I didn’t always get along with my Dad. He pushed me very hard at a time when I was too mixed up to handle my own problems. He didn’t recognize those times when I needed him to take off the damn hat and just be there for me. I don’t blame him, I just feel that at times he was more worried about outrunning his childhood than being present in mine.

I am glad to say that, later in life we became close. We closed the gap, evened the playing field as it were. He went on to be a loving and doting Grandfather to my children and I think he made peace with most of his demons.

He died young from a terrible disease. He is missed by a lot of people. Most of all by me.

Quality time

I’ve always enjoyed “Down-time”. Somehow, I went from never having any time to myself; I worked a lot through school and carried a maximum course load, I pulled at least 2 all-nighters per week in college and worked full time, and after college, I worked 2 jobs. Once I became a family man, my life only got busier. I always craved a day, or even a few hours to myself life never really allowed it. In the off chance that I did have some free time, time without a wifey-issued “Honey Do” list or a parental commitment, I enjoyed finding a movie or a documentary that interested me and I would enjoy it with a whiskey and maybe a hit or two of some stinky weed. That was all my life allowed.

When illness took me out of the “busy” phase of my life I found myself with the opposite problem, too much time on my hands. It was dreadful for me, the transition of paces. In addition, much of the downtime was, and I’m not sure if I’m phrasing this properly, but much of it was unusable. For starters, I was on dialysis. Dialysis is incredibly time-consuming and none of it is valuable. It consists of waiting, forcing yourself to be still for over 4 hours with a painful needle in your arm, and treatments often resulted in my feeling nauseous or outright sick. When I was home, between sessions, I slept a lot and generally felt ill.

Unusable.

Once I got used to dialysis and managed to find some quality of life, I recognized that I needed to get some joy in my life. It is fair to say, as I look back, that I had limited expectations of my longevity. So I created a bucket list. Instead of accomplishments and destinations, I made a list of things that would make me happy. Having concluded long before that real happiness has eluded me in the past, I was determined that if I can’t die accomplished, then I would at least die at peace.

The first item on my list was therapy. Not in the form of a psychiatrist or Psychologist, but in wind. Wind therapy is expensive but remarkably simple. All you need is a motorcycle. So despite feeling sick all of the time, despite lacking funds and despite the naysayers who warned of the dangers I bought a bike.

I absolulely love riding my motorcycle. While I enjoy the comraderie it provides, motorcycling is very social and many treat it as a Brotherhood, I also enjoy accumulating bugs in my teeth while riding alone. The fresh air and smells of the countryside does wonders for my mood, and hanging corners provides just enough adrenaline to remind me that I am ALIVE.

I really can’t close on a better note. There is a difference between prolonging the inevitability of death and actually feeling alive.

Getting outside, preferably with my Iron Steed, is the simple pleasure in life that keeps me going.

Early memories

I was recently asked what my earliest childhood memory is. I always cringe when asked about a childhood memory. The fact is, I either have a terrible memory or I have suppressed an awful lot of my childhood. Given my penchant for mercilessly beating the crap out of myself for things that happened forever ago, one would think that my memory is tremendous. I will compromise and say that I have a great memory but it doesn’t go back very far in my childhood.

But I do remember one particular toy very well, let me tell you about it.

The “Hoppity Hop”, the 70’s greatest invention. A big rubber ball with handles that you can hop around on. Every kid in America had one and I was no exception. I brought mine everywhere. Including on vacation to Papoose Pond Camping area in the State of Maine.

Pappoose Pond was a favorite destination of ours. Mom and Dad were Square Dancers (go ahead and deride deride) in the 70’s. They had a lot of fun and made many friends. Those friends had kids of course, and that made it fun for me. Every summer, as many as 8 families would take 2 weeks off for the annual Jamboree. Long after Square Dancing was done, the same families would meet. This was great for me, as a young child I always looked forward to my “2 week friends”, and as we got older we managed to get together more often.

I’ll never forget certain details of those excursions. For starters, the Pond was incredibly murky, so much so that we didn’t do a lot of swimming. I also remember that it rained several days every year and the dirt road’s multitude of potholes became a great way to get filthy as we plowed our bicycles through. I fondly remember the adults all getting together for wine coolers, crackers and cheese; a ritual that would ultimately span decades.

But one of my favorite memories was the playground. As far as playgrounds were concerned, this one was the Taj Mahal. At least 2 huge Jungle Gyms, sandboxes, the Rocking Horses on giant springs, and the tallest Swing Set I have ever seen.

If I were to visit there today, and nothing would please me more, those swings are most likely not there anymore. This would be due to the simple fact that they were dangerous.

Today’s generation could never handle them and the pussified parents of today wouldn’t allow their children to swing 20 feet into the air. Additionally, the swings were made of wood. Hard wood with edges that can cause damage. How do I know?

I was hit in the face with one.

My family, cousins and all, spent a great deal of time in that playground. One sunny day in August, I was bouncing around on my Hoppity Hop, having a grand ole time. My cousins, all 6 of them were taking turns on the monstrous swing set. To this day I am still not sure why, but I think I can safely say that natural stupidity was a part of it, I hopped my way directly into the path of the swings. I remember much shouting, my mother’s voice stands out, and then looking up. My older cousin Deb was mid-air, on a downward trajectory yelling at the top of her voice for me to move out of the way. As I type this I recall that I was watching this as if in slow-motion.

Too late. I was struck and I flew through the air. Not an exaggeration, I flew at least 6 feet. I had been struck in the face and there was no shortage of yelling and screaming as family members and strangers ran to assist me. Amazingly, I was fine. I had a deep cut under my left eye and a headache, but I was relatively unscathed.

I was taken to the hospital where the doctor stitched my cut and made the official diagnosis that I have the hardest head in recorded history. He also made the tacit observation that I was the luckiest kid alive. A mere inch higher and I would have lost an eye.

I will never forget the concern on my family’s faces, and the face of my cousin Mike, whose face told me that I would be called a dumbass forever.

Dumbass is not far off, but I have amended it a bit.

That’s “Lucky” dumbass to you, sir.