Tag: feedback

Sunshine Blogger award

I was nominated by All about life for the Sunshine blogger award.

And the award goes to…….those who are creative, positive, and inspiring, while spreading sunshine to the blogging community and, apparently, that includes me! While not much for awards (I really don’t feel worthy), out of respect for her nominating me and with a desire to draw attention to her blog I want to answer the questions posed in the nomination. Lisa pens a really wonderful blog, written in a very down-to-earth manner and it just reeks of positivity.  She engages her readers and offers sincere, useful feedback. Oh yeah, she’s funny. Check that out here. I personally am thrilled to have found her blog.

  1. What’s the thing that you like most about yourself?
    I would like to think that if nothing else, I am genuine. I can’t and won’t pretend I’m something I’m not. Some people are like playing cards. From the front they look solid, turn them to the side and there’s just nothing there.
  2. Do you have any little oddities?
    I have a lot of little oddities. Let’s see if I can come up with a non-embarrassing one. I have a nervous tick, when I tell a joke that I am uncertain about (due to appropriateness or for fear of offending a snowflake) I slap my leg at the punchline. My son makes fun of me all of the time for it.
  3. A million dollars or a 1000 hours of bliss? Which would you prefer?
    I would take the million dollars and then create some bliss. I would do as many meaningful gestures as possible with the money. Anything from buying new cars for my kids to helping a military family or a family with a terminally ill child. Something that would better someone’s life.
  4. Which animal do you most identify with?
    The dog. I have the potential to love unconditionally. I am loyal. I may have teeth and am capable of doing harm but at the end of the day if you rub my head just right I will be truly happy. 
  5. Do you believe in fate or think we create our own destinies?
    I’ve always struggled with the notion that our destinies are pre-determined. That it’s all a master plan that we have to wait and see how it plays out. So I guess I believe that we, to the best of our abilities create our own destinies. In the end it is a combination of our willingness to take risks, our drive to succeed, the ability to make good decisions and our ability to get up after we get our asses kicked.
  6. Which of your blog posts are you most proud of (feel free to add link)
    I tend to avoid the word “proud”. But I would have to say that I am happy with my few attempts at fiction and poetry but I am most rewarded by the response I have gotten from those posts that I really put my bare ass out there and shared my life. Many who read me find my “brutal honesty” (not my words but a reader’s) refreshing. It helped me also by putting it out there, it is liberating.
  7. It’s your last day on Earth – what will you do?
    I’ve been chronically ill for a long time. I am probably the worst I have ever been as I type this. I tend to treat each day as if it is my last in that I make sure that all of the people in my life know how I feel about them; that I free myself from anger and bitterness; not waste my time with negative people and thoughts; and I make it a point to enjoy every sunset, gust of breeze, conversation, and opportunity to laugh knowing that if I were not to wake tomorrow I left nothing on the table.
  8. What’s your favorite quote and why?
    Pine
    I don’t care how much shit you have, how many instagram followers you have, how much you make or how big your house is. Do you have character? That is how you will be remembered.
  9. If you had to give up one forever would it be reading or writing?
    I’d eat a bullet before I would give up either. Books are an eternal wellspring of knowledge, fantasy and learning. A life without these is no life. Writing is my only therapy, I like to think I do it well and I would also like to think that I have helped or inspired someone by my writing.
  10. What’s your happiest memory?
    I have so many. All of them involved when my kids were young. Footie pajamas, silly movies, shoulder rides, bedtime stories and belly laughs. Wishing they would never grow up. 
  11. Who are you?
    I am Bill. I will never put fruit in my beer. I like what I like and I don’t ask you to change for me, just accept me for what I am. Opinionated as hell but accepting to a fault.  I am a philanthropist with no money, I still want to save the world. I am a guy with no job, no money living with his mother that still believes that life is good and will only get better.

I am not going to nominate anyone. If you feel encouraged to play along, I would love to hear your answers to the same (great) questions.

Hope

If I could pick one thing that I have always had an abundance of, I would say it is hope. I have left many impressions on those around me, some good and some not so much, but most everyone saw me as optimistic. As life kicked me to the ground repeatedly, often at my own request through stupidity, ignorance and drunkenness, I got up and dusted myself off and looked to tomorrow to be a better day. It wasn’t forced, it was just how I was. My glass, usually containing beer or scotch, was usually half-full and always refillable.

I came to rely on my optimistic nature as I became sick. Despite being diagnosed with a potentially life-altering (and possibly ending) disease in my early twenties I refused to let it define me. I cruised through my twenties at a frenetic, often drunken state and really never gave it a thought. When I had a “episode” of peeing coca-cola colored urine, searing lower back pain, severe fatigue and bedrest I was of course reminded in the starkest of ways. But when the symptoms went away I pushed it to the back of my mind again.

In my thirties my disease progressed. My “outbreaks” were more frequent. I was forced to face up to it more often. In the interest of protecting my family from worry and my employers from firing me, I tucked it deep down inside. I then added denial to the mix, because “not thinking about it” wasn’t doing the trick. I still had so many things to accomplish.

Despite being in crushing debt I was hopeful that a big break would come so I worked crazy hours to make more money. All that I achieved was higher blood pressure and the knowledge that no matter how much I made my wife was spending it as if she was a drunken sailor with a fist full of Viagra.

My higher objective was to make the best possible life for my family. The hours, the career changes, the constant worrying about money was in the interest of making sure that my family had everything they needed. My larger hope would be that I could somehow save something for their future. Alas, that was not to be either.

I cruised through my thirties on my rocket ship of denial, fueled by hope. I even entered my forties with just a few outbreaks. Then, at age 41 I was told that a transplant was definitely in my future, there were no other options. I was initially floored. I will admit that there was a emotional breakdown involved. When you avoid crying most of your adult life you are only sticking your finger in the dyke. Eventually the dyke will burst, and this one did. But just like that, I was over it and I was overcome by a powerful and inexplicable sense that this it work out. I had a deadline, and that was to avoid dialysis at all costs. It was my father’s influence on me, he always, to a fault, said that “everything will work out, it always does.” My Dad had a shit life, but he had an abundance of hope.

In my late 40’s, teetering on the edge of dialysis and in the hospital again with a renal-related infection, I was told by my boss that in my absence from work a co-worker had stepped up and offered to be tested for donation. A girl that I barely knew. I had hope. I was told that the odds of her, my only donation offer at this point, being a match were slim.
She was a perfect match. Hope wins. Despite the odds.
We did the surgery 4 months later. I came out of the surgery like a bull out of the gates. I was full of energy, the desire to be better at what I knew, and to tackle those things that I didn’t. I committed myself to recovery. I was back at work in 33 days, that has to be a record. My doctors told me to take it easy. I told them to get lost.

I mountain-biked with the big boys. I set a personal best on the bench press. I lost weight.  I joined a charitable fraternity and paid it forward. I got propositioned by a smoking hot 27 year old Latina at work. Things were great. Well, my marriage was still a train wreck and my finances were in a shambles but I felt great. This continued for 5 years. Then one night, while serving a charity dinner, I suddenly cramped up and was unable to stand. I knew what it was. The next day my doctor confirmed that my new kidney was failing.

I was crushed. I felt betrayed. How could they have not told me that my disease could return? I felt that I had been given false hope. It was only later that I realized that if I was told the potential of failure I may not have tackled life post-transplant as I had. I may have just sat on my ass and waited for it to happen.

When I got divorced, moved in with my mother and applied for disability I pretty much lost hope. The last year has been a year of hibernation. I miss my family, I miss my friends and I miss working. I miss tackling each day like a warrior.

Then, last month I was fortunate to be offered the prospect of another transplant. Again, I have hope. Yet I am cautious. I am nervous. I find myself withdrawing from my friends and family. I am haunted by the prospect of it not happening, or not working out. Every day, every Dr visit is part of the waiting game. I am deathly afraid of false hope.

That’s why I have been posting poetry and dabbling with my “Jack Valentine” saga. I am dabbling in the fantasy world to avoid reality. Writing about my real life, as I have always done with a modicum of success, seems out of reach.

Maybe I need more of the one thing I have always lacked.

Patience

 

The kindness of strangers

I wrote a post many, many months ago challenging those who say the lovely, always productive phrase “people suck.” You can find it Here.

I’ve always hated that expression. I believe, I want to and have to, that most people strive to be the best person they can be. I also believe that the best way to reveal character is not in the year of your car, the size of your watch, how much you have in the bank or how many Instagram followers you have but instead by your deeds towards others.

I’m less interested in whether you have stood with the great. I want to know if you’ve sat with the broken.

I received a call from a Masonic Brother last week. He was checking in to see how I was feeling. I told him the truth. Virtually sofa-ridden, fatigued and in need of dialysis. He appreciated the update. We talked for a while and he then excused himself because he had something to do. I put down the phone, put my head back and settled in for the ninth nap of the day (I may be exaggerating a bit). Several minutes later my phone starting blowing up with FB notifications. I took a look.

He had excused himself to compose FB posts on every MA FB page related to Masonry regarding my condition and my need for another donor. It was overwhelming.

The messages began to pour in. Due to my brother’s gesture I have six, yes six people who have asked to be tested in order to donate a kidney to me. 4 of them I have never met or even heard their name before.
download (46)

I am humbled, excited, honored and blessed by this outpouring of support. It has given me something that I have not experienced, nor expected to, for over a year. What is that you ask?

Hope, I now have hope.

If I ever have the privilege of speaking to any of you, please don’t ever tell me that people suck. I’m not the guy who will buy into that mentality. The good ones are out there, maybe you have to look a little harder. Just remember…

If you can’t find one, become one.

Fighting the good fight

My mother is a wonderful person. Of course I think so. But a lot of others do as well. Today, someone hurt her feelings and I decided to do something about it.

My mom and dad retired to this house in NH upon my father’s retirement in 2000. My mother, to combat the rampant boredom of the winter months began substitute teaching in the local schools. She has always enjoyed teaching, was able to work it out that she would work with kids no older than 5th grade, and she became a local legend. The kids loved her. She still does it, at age 73 and the kids still love her. She doesn’t do it for the money, she loves the kids. Many become very attached to her, it’s very heartwarming. It’s equally depressing when you see what some of these kids have for a home life.

In 2001, the first of a long line of enamored children latched onto my mother’s leg. Her heart would soon follow. Kris was a a bright girl from an awful family. Both parents were postal workers in town, so money wasn’t the issue. The issue was a drunk, misogynistic father and a absentee mother. They held down the jobs, but they weren’t there for the parenting. Kris’s two older sisters had set the standard of being fat, useless and working in outlet stores and Kris was doomed to the same fate without intervention. Enter my mother.

My mother took her under her wing and made sure that this girl got through school. She tutored her after school and at home. She reviewed all of her work, kept her attitude in check and promised to do everything she could to get through high school. Kris ended up graduating at the top of her class. Mom was at the graduation cheering louder than anyone.

Kris didn’t know about going to college, Mom helped her do all of the applications. 2 years ago she graduated college with a job offer with Fidelity Investments. My mom was a huge part of her success and they are now special friends. It’s a great story, even though she annoys the shit out of me.

She calls all the time. She prattles on like a dipshit junior high-schooler. She is incredibly opinionated on everything. And despite being a 200 lb virgin with baked bean teeth, and engaged to the first guy who ever kissed her, she is also a relationship expert. In particular, on my mom’s relationships. Recently she made it clear that she didn’t like my mother’s boyfriend. Then it came out that she doesn’t want my mother to date at all because she believes that we only get one true love in our life so stop trying for another. Mom politely dismissed this observation. When she tried to get me to come to her side, I told her I thought she was wrong and waaaaay off.

Her wedding is to take place in October. My mom received her invite several months ago. In the “plus one” section she wrote in her boyfriend’s name. Tonight Kris called her on the way home from work and told her that she didn’t want my mother bringing him to the wedding. My mother was shaken by this, I watched her as she was talking on the phone. Kris asked her if she would be upset and my mother said, “Well, I wouldn’t be happy. For starters, who am I going to dance with?” They talked for a few more minutes and then they hung up. Mom filled me in on the details I couldn’t hear. I asked her if she was ok with it, she said she wasn’t.

I told her I’d take care of it. I told her I was going to send her a FB messenger message. I promised Mom that it was coming from me and that I would assume any responsibility for damages if a shitstorm ensued. Here is what I wrote:
Kris:
I want to start by saying that I respect you. You’ve done some great things in your life and I consider you a good person. 
Which is why I must take issue with your request that Dave not be at your wedding. My mother has been by your side since you were a child, almost a second mother to you. She has never asked anything of you. Knowing this. why is she not allowed to bring the plus one of her choice to your wedding? 
I cannot imagine what benefit you find in making the person who treats you like her own daughter unhappy.
I have no influence over you and I don’t generally overstep my boundaries but I’m going to strongly request that you change your mind on this matter.

I let mom proofread it. She shook her head, said “wow” and walked away. I sent it. For three hours I did not get a response.

Mom walked in at about 11PM and asked if I had heard back. I told her that I hadn’t. She told me that Kris’s mother had just texted her that they would love to have Dave be a guest at the wedding.

Mom high-fived me and left the room. She seems happy.

Me? I feel like the right outcome was reached.

I went to a Garden Party

Have you ever heard this song? Because I can’t get it out of my head.

Went to a garden party to reminisce with my old friends
A chance to share old memories and play our songs again
When I got to the garden party, they all knew my name
No one recognized me, I didn’t look the same

But it’s all right now, I learned my lesson well.
You see, ya can’t please everyone, so ya got to please yourself
Ricky Nelson
Garden Party

On Sunday I went to a 4th of July party at my old friend Mark’s house. I’ve been in a weird place ever since.

I was so excited when the FB invitation hit my newsfeed 2 weeks ago. Mark is part of my old crew, a group of guys that I spent almost every social minute with. Mark, Scott, Paul, Ernie (real name Paul) and Johnny D (real name John) and I were inseparable from our supermarket days. My immediate reaction to the invitation was of a reunion with the boys, to laugh and drink beers and reminisce about the fun days we had. Those were the only days of my life that I can honestly call the “good old days.” Seeing these guys meant a lot to me because I have almost completely lost touch with all of them with the exception of Scott. I went to the page and clicked “going”.

Mark owns a beautiful 2nd home on a private lake in ME, not too far from me. If the party was being held in MA, where we all hail from, I may not have gone due to the distance. Who am I kidding, I know that I would have tried to talk myself out of going anyway. While initially excited about seeing the guys, when I started thinking about my situation I began to have second thoughts.
What if I don’t feel well that day?
I have been day to day lately, the fatigue has been unpredictable and brutal.
Will there be swimming?
I’m not wearing shorts, my legs are swollen and embarrassing.
It’s supposed to be hot.
Again, the legs.
What if I don’t know anyone?
Scott and Mark will be there.
What if someone asks me what I’ve been up to?
Deal with it when it happens.

I decided that it would depend on who was going. I checked the page for responses and a couple of the guys had already declined. I texted Scott, if he was going I would make the trip. As it turns out, he was thinking the same way, he was going if I was. It was a date.

The party started at 2, I decided to arrive by 3. Arriving late is great when you want to make an inconspicuous entrance. Scott also had set his sights on 3 so I was hoping he would be on schedule.

I have been to Mark’s house once before but I wasn’t comfortable with doing it by memory so I turned on the iphone NAV. No signal. I decided to head in the general direction and hope for a signal. I missed a couple of turns and was about 5 miles away when my phone suddenly caught a signal. After all of the backtracking I arrived exactly at 3. When I got out of my truck I saw Scott and his wife Dana pulling in, Perfect.

Scott is the one guy in the group that I have maintained steady contact with. He is a good friend. Even when I was negligent with the communication, I would periodically get a text from him checking in. He has been diligent in asking how I am doing in life while most aren’t because they are afraid that if they ask me how I am…I might actually tell them. Since our mutual friend Paul passed away from Liver Cancer, we have been closer. Scott was very close to Paul, aware that he was sick and he took it hard. Understandably, because Paul was a saint among mere mortal men. I, being the guy that basically dropped out of sight didn’t know anything until Paul had passed. I was a combination of crushed and guilt-ridden. It really drove home the cost of losing touch. When he got out of the car I gave him a bro-hug. He looked great. He’s lost at least 60 pounds since the last time I saw him. I congratulated him.

I gave Dana a hug, I haven’t seen her in forever. She and Scott have been together for a long time and they have 2 great kids. I haven’t seen her in person in years but Facebook keeps us in touch. She used to always try to get us together as couples but it never happened.

We walked down the hill together, I was glad not to walk down alone. The view that awaited us was amazing. The house was enormous, facing the lake. Lots of windows and decks. The lawn was huge, leading to a private swimming area and boat dock. Games like Cornhole and Volleyball were set up for later and there were about 25 people in lawn chairs enjoying the breezy summer day. Mark immediately greeted us and proceeded to invite us in and give the tour. The house was perfect, well decorated with plenty of rooms but livable, not glamorous. We then went to mingle with the guests, a combination of his family, co-workers, neighbors and business associates. We were introduced to a few and I shrunk into a lawn chair next to Scott and Dana and tried to blend in.

to be continued…

200 posts

I wrote my first blog post on August 24th of last year. It was not my first attempt at blogging but at that time I had promised myself that I would give it a real shot.

At first, it was difficult, I was showing my ass to the world as I discussed with a faceless, anonymous audience my innermost feelings, beliefs, and vulnerabilities as I entered what I can still call the lowest period of my life. At first, no one read my work. Then, a few people took notice and seemed to gravitate towards my brutally honest but generally positive style. Those people became my reason for keeping on and I now can’t imagine my life without their valued insight and friendship.

It’s not about likes or follows, it is about the cathartic effect of writing, especially when you pour pain to paper and people, maybe just one, gets something out of it.

Thank you for letting Superman fly over your airspace these 200 times, I don’t expect to stop anytime soon.

Kicking the can down the road

Six and a half years ago I came out of anesthesia to find myself in a room draped in plastic, many beeping machines, looking up at a Doctor wearing enough protection to make me think that I had been exposed to Miley Cyrus. Through a mask, he asked me when the last time I had worked.

I clumsily and foggily replied, “what day is it?”

“It is Tuesday evening” he informed me.

“Monday.” It was coming back to me. I had worked until noon on Monday, my donor and I received a huge sendoff (we worked together) and we were at Tufts Medical Center at 6:30 AM the next morning. Deb and I had sat with our families, who made nervous small talk until we were called in for prep. Soon we would be counting down from 10 and hoping to open my eyes again in about 6-8 hours.

“Admirable”, he said with an obnoxious sarcasm, “Have you ever been on dialysis?”

“No, thank God.”

“Sir, we have guidelines for dialysis. A number, if you will, that determines how due, or overdue in cases such as yours, a patient is for dialysis. A typical number would be approximately 10. For conversation’s sake would you care to learn what your number was?

“Sure, indulge me.” His snarky attitude was pissing me off.

“110.” He paused for effect. “I’m glad to see you doing so well sir but your behavior was nothing short of reckless. Please be more careful in the future.” He then patted me on the shoulder with his gloved hand and left the room.

Other people may have been concerned, maybe even felt bad. But what I heard was a chorus of soccer hooligans yelling “YEAH, you pulled it off you wanka! Good job mate!” I had avoided dialysis. Reckless or not, I didn’t give a shit. I did it. His dire warning wasn’t even the first for me. Approximately one month before my surgery I received an email from my doctor. Most doctor’s don’t send personal emails.

Your lab work suggests you may be in danger of a heart attack. Please, Bill if you feel chest pain, shortness of breath or light-headed admit yourself immediately.

I read it and dismissed it. I assured myself that I will make it. Repeat after me, I told myself, Death before dialysis. I was kicking the can down the road and I didn’t care.

I have had Kidney disease since I was a teenager. I have met every single challenge with enough denial and/or bravery to move on to the next obstacle. I always knew that a transplant may be in my future and I even prepared myself for the possibility of death. One thing I refused to entertain was dialysis. The snarky doctor, despite his attempts to minimize my accomplishment, had actually validated it. I had vanquished my enemy.

Until now.

After yesterday’s appointment, my Doctor’s best estimate is that I am 3-6 months from dialysis. My transplant has finally reached the unpleasant milestone of failed. The moment that I have fought, nay, railed against since my diagnosis is upon me. I can’t wrap my head around it.

I am an exceedingly logical person. I believe that when you do the work you reap the benefits. I believe that if an expert says A + B = C then I will do my best to add them properly. In this case, A and B were to strictly follow my Doctor’s orders regarding nutrition, sodium intake, alcohol and caffeine and exercise. C would be the result, C would be extending the life of my transplanted kidney another 3 years (we had this conversation 6 months ago. I did it, all of it, and it accomplished fucking nothing and now I have to finally accept that my life is only going to be as long as the extension cord in my dialysis center.

joke break…

A man and his wife are discussing end of life matters. The husband loudly declares
“when it’s my time, I refuse to be glued to some machine living off of a bottle!”
The wife unplugged the TV, threw his beer in the trash and left the room.

I used to love that joke. It’s dark and twisted and completely inappropriate just like me. It also played into, or to be more clear downplayed, my crippling fear of dialysis

I don’t fear a lot. I always look to the bright side. I haven’t dwelt on the number of years and instead have focused on quality of life. Dialysis represents to me the end of quality of life. It is forcing me to (finally) accept my limitations and to admit that I am finally sick and, to touch on a familiar theme, I’m going to look it.
It represents a complete lack of freedom and independence. I may not have plans to spontaneously pack my shit and just go somewhere but in 3 to 6 months the fantasy is just that. I will need to plan everything based on that extension cord.
I can look forward to infections, setbacks and more hospital stays because dialysis patients always get sick from treatments.
I view it as death’s waiting room. Sit, listen to the machine whirring, wonder where you are on the transplant list (if I’m even eligible), read a book about how it’s not so bad and wait for the next shoe to drop.

I’m not ready for that shoe to drop. Despite how wrong I may be wrong about a lot of what I just said, I can’t change my mind about it. I hate it and I’m scared.

I know that I’ll pull through this as I have everything else. But I’m not there yet. Right now, I’m mad and scared. I know myself enough to know that I have to get this out of my system, regardless of whether my blog has read like a Sylvia Plath poem lately. If I don’t get my anger out of my system I will be unable to move on to fucking dealing with it and moving on with my life. See, I know that overly dwelling on the future only cheats me out of the present but at the moment I don’t see the future in a bright light. I need to finish this blog, go outside and scream with clenched fists some FUCK YOU’s to the universe for kicking me in the ball again and then, and only then, move on to what I’m going to do next.

If you have made it this far, this is not a post fishing for sympathy. I don’t need anyone to offer uplifting sentiment. I just need to get this off of me because I want to move on, get back to a position of strength, loosen up and find Superman again. Before the Kryptonite of Dialysis defeats me.

Thanks for listening…

 

 

 

 

 

 

 

 

 

 

Labels are for boxes

Superman is about to delve into previously unchartered waters…Politics. I briefly touched on it in a piece I did about civil war, inspired by a wonderful post by Bojana about her experience in war-torn former Yugoslavia. It’s amazing by the way check it out. here https://bloggingwithbojana.com/2018/03/07/welcome-to-absurdistan/

I have largely stayed away from politics in my blogs. After 9 months and almost 200 posts I now feel that I have established myself as a reasonable, civil guy and I have a confession to make. I am a Conservative…of sorts and I voted for Donald Trump. I believed in enough of what he wanted to accomplish to give him my vote. Immigration reform, crime reform, smaller government, a balanced budget, a secure border and the future of the Supreme court matter a great deal to me. On those, he secured my vote. Let the unfollowing begin. Or let cooler heads prevail. If you read to the end, you will likely agree that I am not a typical Conservative at all. Here’s the kicker, I’m not looking for your approval I’m just going to stimulate some conversation here.

I know some beautiful, smart and compassionate people that voted for both Donald Trump and Hillary. I love them all and I don’t judge or hate. I am in the minority. Our country is hopelessly divided. We have always had an ideological divide, but it has become intensely personal. If you are on FB you will see nothing but Vitriol spewed on both sides of the spectrum and it is so unhealthy on so many levels. My generation taught me that there are certain subjects never to discuss, but I disagree. Religion, sexuality, and Politics can be discussed if we were also taught the art of rational, intelligent discourse. Repeat after me, “I disagree but I respect your opinion.” Instead, we close our ears and raise our voice. We rear back on our heels and defend, for fear of losing, when instead we should be chin on hands, listening to each other. Tragically, we care more about “our side” than we do about real change.

“My side” is traditional William F. Buckley and Ronald Reagan conservatism. I revert to that point in history because if you use the word “Conservative” now you will likely invoke the iconic MAGA hat worn by the “Trump Supporter.” The very words ”Trump Supporter” are hissed by liberals in the same manner that the Pope may utter “Contraception”. The words have become synonymous with Racist, Xenophobe, Nazi, Fascist and Bully. That’s not me, I’m happy to report, but it is a reality that a lot of Trump era conservatives live up to it and it’s a shame. I am tolerant, empathetic, polite and educated enough to agree to disagree with someone without shouting them down, closing my ears when I should be listening, or ignoring or exaggerating “facts” in order to win one for my side.

I am saddened that I have to avoid the subject of politics altogether for fear of being attacked. I’m actually pretty liberal on social matters. I believe in love between two people regardless of gender; I believe in immigration if it is done legally. I believe in law and order but not martial law. I believe in concealed carry but see no reason for anyone to own an AR-15. Go ahead and try to force this square peg into a round hole, you can’t do it. Criticize me, I can handle it. Just do it constructively, don’t shout and pay attention when I speak. I deserve that courtesy.

Roughly 24% of Americans identify as Republicans, approximately 30% identify as Democrats. What is left is the Independent voter. I identify as an Independent, despite the federal govt’s alternate term of “undecided voter”. I share this political distinction with approximately half of the country and I would like to think that we are independent because of our insistence on thinking for ourselves. We reject party politics and hate labels. But labels are all we have now. Whether it is driven by the media, George Soros, Hollywood, a basic lack of education, short attention spans or the absolute lack of critical thinking but we are mired in labels.

Republican, Democrat, Progressive, Liberal, Tea-Party, and Right-winger. Labels, Labels, Labels. Despite the numbers I stated in the previous paragraph, I see 15% of the country at the very far right, 15% at the very far left and 70% right in the middle, forced to pick between two candidates that seem to satisfy enough of us. But the extremes have defined Republicans and Democrats and forced those willing, not me, to be forcefully compartmentalized. Those unfortunate voters are the true Republicans, the true Democrats, and the Independents. The 15% on each side quarrel over extreme ideology and the rest of us vote our conscience and our wallets, the order of those 2 is up to you.

At the end of the day, it is all bullshit. Neither party of our broken two-party system stand for what they used to, the lines are so blurred and the aisle dividing the houses of Congress is as wide as the ocean and it doesn’t matter because no one is reaching across it. Fulfilling campaign promises and getting reelected take precedent over real legislative accomplishment. There used to be moderates, who believed that there was a compromise to be made for the better of all. They’re either gone or too afraid to stand up for fear of reprisal. If you watched the SOTU you clearly saw that when the President had his applaud moments, entire sides of the rooms respectively stood or sat with their arms crossed. Some Democrats were so resistant to standing for anything the president said they sat even when families of murdered children were honored. It was disgusting, and it said it all. Fear of breaking labels, that’s all it is.

What is a typical Democrat and Republican after all? Where does being a Democrat end and a Progressive begin? Where does a Republican end a Tea-Party Conservative begin?
Democrats, commonly known now as “Liberals” have always considered themselves the party of the working man. They opposed corporate greed and the Industrial Military Complex, and strongly focused on social issues. Today, the Democrats have become the party of bloated government, high taxes, massive regulation, and throwing tremendous amounts of money at problems in hopes that they go away. The focus of some extreme modern democrats on trans-gender bathrooms, abortion, open borders, the suppression of speech that offends their beliefs and the eschewing of religion has earned many to the far-left the label of “Progressive”. A progressive believes in social engineering, “hug-it-out’s” for terrorists, legislating income redistribution and, generally speaking, dwell on utopian ideals. I find great hypocrisy in the Democrats of today. Example, how can you champion yourselves the party of equality, while at the same time propping up Muslims who routinely deny women the most basic of rights, subject underage girls to marriage and stone homosexuals to death?

Republicans were traditionally known as the party of “family values”, believed in a strong military, a market economy, personal accountability, and were strongly aligned with the Evangelical Christians. Republicans are no better than their Democrat peers in their obstructionism, failure to reach across the aisle and to adhere to their core principles. I contend, despite my own identification as a Conservative, that the Republicans have drifted farther off course than the Democrats. Today, the Republicans are completely off message. They are trying to solve the complex problem of immigration through massive arrests. They are as guilty of allowing jobs to flee this country as the Democrats. Their alliance with the extreme-right Evangelicals is shameful. Their refusal to stand up to their major campaign donors, the NRA and the Pharmaceutical industries and their lobbyists have left them ineffective and blatant hypocrites who are blocking even the discussion of real reform on major issues. Also prone to hypocrisy, they lost me when they cut benefits to Veterans while touting themselves as the supporters of the military.

Instead of fixing the problems before them, the powers that be distract us by telling us what to hate and who to blame for it. Hence the labels. I for one am tired of it. I am a Conservative that was forced to vote for Donald Trump. It took every fiber of my body to do it, I almost skipped the vote altogether. I find that he cares about some things that matter to me while Hillary represents nothing I believe in. So I again voted against a candidate and not for one. I am not a Nazi, a Fascist, a Racist or a Sexist. But I stand to be labeled as one.

https://endsandbeginningsblog.wordpress.com/ a blogger I admire, posted recently about a reaction to Conservatives and their bad behavior, in particular, being called a “typical liberal.”
https://endsandbeginningsblog.wordpress.com/2018/03/20/typical-liberal/
I commented on the post, not realizing that I was having a visceral reaction to the post. I do disagree with a lot of what was said, but I felt like I was being called out. That wasn’t the case and I gave a balanced response along the lines of what I have written here. At the end of the day, I wanted to convey that  I am not a “typical conservative”. Even if that was the case, why do I care?

Because we are living in a fractured, divided culture and we are all on edge. Half the country is yelling at the other half and nothing is being resolved. The big picture is that the division in our society, as manifested in our behavior towards each other is based on all of us feeling that we are not being heard, so we speak louder.

My mother always said, “when you are speaking you are not listening.” I would further extrapolate on that and say if you are shouting you aren’t helping. Step out of your comfort zone, step out of our compartmentalized belief system, question what you’re being fed by the media, embrace another’s opinion. They’re not wrong, they’re just different. No one is smarter and no one is dumber. At least it looks that way until we speak. The way I see it, if we reshape our ways of communicating, it’s possible our leaders will find their lost direction in our new one.

Labels are for envelopes, not for people. We’re better than that. One love, baby.

Where’s the Grief?

Today I attended a memorial service for a man that I never met. I know his widow, she is a dear friend of my Mother’s. I know that he was a good friend of my father, that matters to me. I also know that he died of Parkinson’s, as did my father. What a terrible thing to have in common.

The church was packed when I arrived today. The bells of the 180-year-old church clanged, reverberating through our little town as I walked in.
download (40)
Just in time. On any given Sunday I could walk in and find a seat in the third row. For today’s memorial, with friends and family coming from all over in addition to the regulars, seating was limited and I ended up in the back row.

After the Reverend delivered his opening remarks and I suffered through 2 hymns and a responsive reading the first speaker, the oldest son, was invited to say some words about his deceased father. My first reaction was the admiration of his courage. He was attempting what I would not. I remember wanting badly to deliver my father’s eulogy but I was self-aware enough to know that I wouldn’t get through it, I would get too emotional. I wrote it, my Reverend read it on my behalf, and I sat there and cried. At words that I wrote. Pathetic. But I can only imagine the train wreck I would have been if I attempted to do it. So with great sympathy, a sense of kinship with a man I had never met for what we now had in common, and a curious ear, I listened to his remarks. It was a touching speech, he used a lot of big words, he referenced a lot of things that he admired about his Dad, what he learned from him and how they were different. Something just didn’t sit well with me, something was missing. May I be struck dead by lightning if I’m a shit for thinking this but, where was the emotion? Have I set the bar so high in my own mind about eulogizing fathers that I am actually grading his performance? Shaking my head and quietly dismissing that crazy notion I still don’t know why it bothers me that this guy didn’t cry or tear up a little.
download (41)
My mother cared for my father as Parkinson’s ravaged his body and reduced him to a withered shell. The last 3 years were awful. My mother didn’t cry that much at the funeral, but she’s not a crier. We are a family of “bottle-it-up-and-snap-someday” personalities. When she began dating a mere 6 months after his death I struggled with it. When I asked her how she could date so soon she said that she did her mourning while he was still alive. That his passing was expected and just the final step. I don’t get it but it’s her process. With this in mind, I waited patiently in line to pay my regards to the family and when I met him I congratulated him on his remarks. I mentioned that his dad and my dad were friends and both had the same disease. He gave me a big smiley thank you, which threw me off, and I asked him how he was able to deliver it without breaking down. I was clear that it wasn’t a criticism, only that I could never have done it without breaking down. He didn’t have an answer. Maybe Mom was right. He watched his father suffer for years so maybe he was just ready for it. But, here’s the kicker, so did I. And I was still an emotional, blubbering mess when my father died.

The first time I discovered my fear of speaking in public was at my Grandfather’s funeral in 2002. I offered to write his eulogy and I really made an effort to capture the man. He was 92 so I celebrated his life and spoke of some fond memories. As I spoke I was sad of course, he was a major influence on me, but as I said, he was 92. I focused on his best traits. His wicked sense of humor, his honesty, and integrity, his simple way of life were well known and celebrated. Still, I barely got through it, I broke down. The small crowd didn’t care, their takeaway was how much like him I was (an indisputable truth). It was a learning experience.

When my dad passed I knew that I would be the one to memorialize him. As I stated earlier, I wrote a long eulogy, perhaps too long, about his influence on me, his defining qualities of being a great friend, co-worker, dad, husband. I spared nothing, as I do in my blog, telling of my regrets at things left unsaid and how he simply deserved better. It brought the house down. As people filed past me, one even said, in tears, “I have to go and call my father now.” Moved and grateful as I was, I didn’t have a big smile on my face. I was a wreck. I didn’t want kudos on my speech, I wanted my father back.

Now I sit here and wonder if the son, the man who gave a beautiful but emotionless speech, had the same experiences I did? The ones that you would never talk about in a memorial because people don’t want to hear it.

I wonder if he ever heard his father cry because he knew, that no matter how hard he tried to hang on, he wouldn’t be around to celebrate his next wedding anniversary with his lifelong sweetheart? They were married 49 years.

I wonder if he ever saw his father on the toilet, unable to wipe himself and too weak to stand, trying (he could barely speak) to get me to get his caretaker to wipe his ass because he did not want me to see him like that?

I wonder if his father ever pulled him close and in a forced whisper say, “Gun…key” in his ear, imploring him to go downstairs, find the key to the cabinet, get a gun and let him fucking end it?

I wonder if he has loose ends, things he wanted to say but couldn’t, or didn’t. Apologies or thank you’s?

I wonder if he is haunted by feeding the man who taught him to use a spoon, his dinner through one?

I wonder if he wants to scream at the top of his lungs “Fuck YOU Parkinson’s” like I do. Every day.

I wonder if it’s just me. Maybe I’m just being a jerk. We all grieve differently and we all handle things differently. His father died a week ago, I lost mine 5 years ago. Why am I the emotional one?

Acceptance

I want to thank those of you that read and interacted with me on my recent “you don’t look sick” series. The series started out as my take on having a condition but not allowing it to define me. I allowed it to morph into my telling that basic story that has pervaded my entire blog but in greater detail. In a sense, I told my whole story.

I reviewed the series this morning, fearful that I had painted too vague a picture and not stayed on point. All in all, I think I said what I wanted to say and stayed on point. I also read the comments and it was then that I realized that I had left something out. Considering that I read Elizabeth Kubler-Ross in High School when two of my best friends died in a fiery car crash I should have recognized that I left out Acceptance.

When I began this blog I was at a low point. The title itself, Superman can’t find a phone booth, was conceived in a hospital bed and suggests the futility of being once-powerful and now without an outlet. As my blogging journey progressed I began to come to grips with my homelessness, financial situation, relationship with my children, deteriorating marriage and place in the world. The one thing I did not embrace was the obvious-to-everyone-but-me fact that my illness was not to be ignored anymore. No amount of positive thinking, Tony Robbins podcasts or denial was going to make me better.

I speak often of the fearless, forge-ahead at all costs attitude that I was able to maintain for so many years. I still maintain that it was the right thing to do. I managed to keep my family worrying about me to a minimum and it allowed me to work for as long as I could. But, I always rejected the notion that it was denial. I joked about it when confronted with it, spinning it back on my detractors with its success rate. Hell, even my doctors begrudgingly admitted that it worked for me. But only recently, perhaps it was today when reading the comments of some bloggers who are “in the know”, it occurred to me that I have moved past the denial phase and have achieved Acceptance. This is a bittersweet step for me.

I can accept that my condition will not go away if I ignore it. But I’ve never really allowed myself to think openly and honestly at what the future holds, even though I know. Years of Dialysis, a possibility of another transplant and a hope for a cure. Without my denial, will I resign myself to this path or fight it?

I can accept that I may never work full-time again. This kills me. But my recent dabble in part-time work, albeit fun, has taken a physical toll. I don’t think it’s a matter of conditioning, my body really can’t take it. Consequently, I have to accept that 2 days of work requires two days of recovery.

I can even accept that I will likely live in my mother’s house until the day I die. It’s technically mine, she is leaving it to me, and she will outlive me anyway so I’m getting my inheritance now.

What I am having difficulty accepting is how lousy I have felt and the lack of breaks between symptomatic episodes. I have always had “flare-ups” of gout, edema, cramping and other fun little side effects of kidney disease. But they passed and I would experience a period of relatively good health. Since this past summer, it has been something almost every day. For a while, I was hopeful that I would improve, be relatively symptom-free and look to the day when I can resume some of my favorite activities; biking, hiking, weight lifting, basketball. Today, as I have spent most of the day on the sofa because my blood pressure is dangerously high, I am lightheaded and dizzy when I stand up and extremely listless and unambitious after a busy, but not that busy day yesterday. I am down, and I never, ever get down.

I don’t know if I can accept that a mere 3 years ago I was playing basketball with teenagers, yet my shoes are now collecting dust.
That I was a part of a mountain bikers group that became great friends but now my bike is sitting sadly in the corner of my garage.
That I was at the gym 4 days a week, moving weight and feeling strong. Lately dragging my ass out of bed counts as Cardio.

Fortunately, I do accept that I will never completely give up. I keep the bike and the shoes not to torture myself but as a reminder of what feeling good feels like. In the event that things turn around, or dare I hope for a medical advance of some kind(?) that these things will be at my disposal again.

I’ve never mixed hope and realism before. So far I can tolerate the taste. It’s not the same type of relationship as giving up and accepting.