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…

 

 

 

 

 

 

 

 

 

 

A familiar view

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

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

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

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

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

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

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

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

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

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

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

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

 

pushing it

I went to a blogging party

it was a much anticipated event

I should have listened to my body

And all of the signals that it sent

full of desire to lead a normal life

And to see friends who remove my strife

I took a chance

And had to leave the dance.

Sick and tired of being

Sick and tired

I made the trek

And ended up a wreck

To my fellow attendees

It was so great to see you

The faces behind the words

The heart behind the keyboards

I wish I could have stayed

To laugh and tell tales

But my cards had  been played

And I prematurely set sail

Better days ahead

I keep saying aloud

But something’s gotta give

Either be smart, or stubbornly proud

 

Not so super

The longer you are away the harder it is to come back. But here I am. I offer no promise of quality writing or even linear thought. It’s been 11 days since I have posted and I miss it.

11 days ago I had a good day. I haven’t had one since. Hard to imagine, but my good day consisted of my going in for my bi-weekly lab work. I wouldn’t say that I enjoy going there. I spend over an hour in an infusion center surrounded by some very sick people. I like to think, as I await the results of my labs and a determination is made whether I need a shot or a bag of iron or hemoglobin, that I make some of the nurses smile during my brief stay. I know that I had a pretty big smile on because my lovely Lilliputian Lisa was there. I haven’t seen her since the day I composed a post in her honor entitled Smitten.

Apparently, she doesn’t normally work Friday’s but when the infusion center door opened. there she was. 4 foot 10 of pure sexy awesomeness. And I think she was happy to see me also. We exchanged pleasantries as I dutifully followed her to a seat. I reminded myself to behave. Yes, I am newly divorced but she is married and there is a man-code. She took my BP. It was higher than Willie Nelson. I was reminded of the last time she took it. I had joked that if she walked away it would go down. But I behaved and didn’t do it again. She then said “maybe it’s me?” and gave me a coy smile. I told her that I was being good, she needed to as well. She smiled again and walked away. That’s it, I thought to myself, gloves are off. When she came back I pulled a gem out of my quiver of pick-up lines and said: Are you familiar with Confucius?

“Of course”, she replied.

“My favorite quote by him is ‘He who wants hot nurse must first be patient’.” I could almost hear her underwear falling off.

That was the highlight of my day. I couldn’t get an infusion because of my high BP, a very concerning problem, and she escorted me to the door. I joked with her that she should swap her shift again because I would be there in 2 weeks. She didn’t say no so that’s a sign I guess. To what end I don’t know, all I do know is that she was flirting with me, something that NEVER happens to me and I’ll fucking take it.

I’ve been sick since. My BP is out of control, I am on several new meds and nothing is working. I’ve basically been housebound since. I have missed work, only gone out when I had to and even then I had to force myself. I managed to pull off serving an Easter Breakfast for the die-hards who attended the sunrise service and after 2 hours I was exhausted. I used to be able to work 15 hour days in a kitchen and that 2 hours almost killed me. I went home, napped and went down to MA so see the family for Easter. When I got home I was cooked. I haven’t been out since.

The headaches, the pounding in my head like a John Bonham drum solo, the dizziness, the not-so-patiently-waiting for the new meds to start working is taking a terrible toll. I need to sleep just one night. I hope that night is tonight, I really can’t take much more of this. Old Superman can’t save the day until he remembers how to fly again.

thanks for tolerating my rant. Peace

 

Country music

I was watching a show the other night that mentioned the 80’s urban legend about playing music backwards. Supposedly some weird things would happen. I was intrigued.

I’ve been listening to a lot of country music lately so I gave it a shot and played a country album backwards.

I’ll be damned if I didn’t get my house back, my job back, my dog back…

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.