Fallen Idols

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I always thought that losing an icon was a terrible thing. I sadly remember that stretch in 2016 when several musicians and actors that dominated the formative years of my life started dropping like flies. FB was flooded with people my age imploring God and the Universe to stop taking our idols. Prince, David Bowie, William “Father Mulcahy” Christopher, Gene Wilder, John Glenn, Arnold Palmer, Dan “Grizzly Adams” Haggerty, Muhammad Ali, the list is so terribly long and sad. But they all left a happy memory with me if not a reminder that life is fleeting and I am getting older. I always could reflect on their impact on my life and smile. It’s not the worst thing in life.

The worst thing is actually finding out that someone you looked up to is not the person you thought they were.

I had the pleasure of being great friends with a guy who was the son of a professional basketball player. A Boston Celtic, the replacement for the great Bill Russell, Mr. Hank aka “High Henry” Finkel. My friend had grown up in an affluent neighborhood North of Boston populated by many famous Bruins, Red Sox, Patriots, and Celtics players and he knew all of them and their kids.

When I first met him, I was enamored by his childhood friends and I prodded him constantly for info on them. I am not a celebrity chaser at all, I just wanted to know more about some players that I grew up idolizing. In particular was a certain baseball player, an absolute legend from the 70’s and 80’s that my Dad and I practically bonded over when I was a kid. My friend told me, actually warned me first, that I wouldn’t like what he had to tell me. I insisted. He told me a harrowing tale of a guy who smiled for the cameras and the fans but mercilessly beat his wife and children on occasion…losing streaks in particular. I was crushed when I heard this, as an adult mind you, that an icon of my youth was a great ball player, but a very bad man. Not one for hindsight, I’m pretty sure that I wish I had never learned this.

We live in the information age, as the saying goes. I contend that in some cases there is such a thing as too much information. I stop short of wishing for ignorance but I can think of so many instances where “new information” or “old family secrets” have destroyed a person that at one time gave me a warm and fuzzy. From the late Uncle that you just learned cheated on your beloved Aunt, to the knowledge that a young President that used to reign over the empire of “Camelot” was actually a pill-popping whore-monger, the list is almost endless and equally sad.

The job of role-model is a barnacle on the hull of celebrity. To be fair, other than elected officials, it is unrealistic to expect actors, athletes, musicians, etc., to be anything more than human. They’re really just people like you and I. I fondly remember the scene in a Bronx Tale, where Sonny challenges young “C” on his idolization of Mickey Mantle. “Does he pay your rent? No, he’s just a regular guy. What’s he do for you?” The boy was disillusioned, but it was the day he realized an important truth. That Mickey Mantle was just a ballplayer.

But OJ Simpson was just a football player…and he almost divided the country in half. And cost me a friendship.

I used to go to the same Barber Shop every Tuesday in the 90’s. I had hair back then. I was good friends with the Barber. Every haircut consisted of small talk and I would always find myself drawn to his wedding picture on the mantle before me. The tall, thin white guy with the pretty African American Wife. I never thought twice about him being married to a black woman. Then the OJ trial happened, and you can only imagine that Barber Shops across the country buzzed about it for months. One day, as the trial was close to an end, my Barber and I became engaged in the conversation as well. I offered up, in my own informed opinion, that I thought OJ was guilty. The room got colder than my ex-wife’s side of the bed. My haircut was over and I was asked to leave. I resisted, asking my friend why he was acting this way, and he said “You know my situation! How can I interact with you now?” I was stunned. I asked him:

“By situation…do you mean that because your wife is black then you have to support OJ? That’s preposterous!”

“Well, you believe he’s guilty because he’s black, don’t you?” How do you argue with that kind of logic? I paid for my haircut and I haven’t seen him since. I guess I’m a racist. My real takeaway is that many in the black community couldn’t accept that such a positive role model as OJ could be guilty of such a crime and their disappointment had morphed into anger and denial.

Facts:

I was disgusted when I heard that Bing Crosby beat his kids.
I was bothered when Eddie Murphy got busted with a tranny prostitute.
I was let down when I found out that our founding fathers owned slaves.
I was pissed when I learned Obama went to a church led by an America-hating minister.
I was disappointed when Mark Maguire and Barry Bonds did Steroids.
I was horrified when Michael Richards went on a racial tirade onstage.
I was shocked when Mel Gibson went off on an anti-Semitic public rant.
I was embarrassed when our president was caught on tape talking like a frat-boy about molesting women.
But at the end of the day, It’s just the new norm. People are not what they seem and they probably never were. The latest and perhaps most disappointing entry of late is Mr. Bill Cosby.

Bill Cosby is a unique story. He was a role model to millions of people regardless of skin pigmentation. He didn’t fall into being a role model, he set the framework. He kept it clean, he worked with children, created positive Television programming, spun wonderful yarns of his beloved wife Camile and his flawed but great kids. He did cable comedy and only swore once. He even defied stereotypes and created a hit TV show about a powerful, affluent power couple with a bunch of kids. His superpower was solving any major issue in 22 minutes once a week. A true icon, I admit I looked up to him.

Today, I just looked at him as he did the “perp-walk” from court after being convicted on all charges of sexual assault on a multitude of female victims. Yup, good ole Dr. Huxtable was dropping Mickey’s in their drinks and then slipping them his famous “Pudding Pop”. Another disgraced icon to contend with. A younger me may be disappointed or disillusioned, but this me is not. He’s just a man. A flawed man. A ruined man. My only disappointment is that I allowed myself to look up to him.

Nothing surprises me anymore. In this age of endless information and instant gratification, I can’t even control what I know about people. My real role models have always been the non-famous among us; the great teachers, hard-working parents, and broke philanthropists who volunteer their time and energy to bettering the world. Celebrity is a height that can only lead to a long fall and a painful landing. My advice, keep your feet planted firmly on the ground secure in the knowledge that if it looks too good to be true, it probably is.

The long ride home

The windshield wipers keep rhythm as I adjust my seat forward to make sure I stay awake for the drive home. The heater is on high and I’m still cold. The hot coffee in the holder next to me is calling my name but I’m fixated on the double yellow line, all senses working overtime to get home safe.

This is just one more in a series of post-hospital visit rides home. I’ve done so many that they have become a ritual. I review in my head the events of my stay, even those leading up to it, evaluate how productive it was and ponder the next step. This ride is unlike the others, I am not as optimistic about a positive outcome as usual. In fact, I have a very confident feeling that I will be back in the hospital soon. I’m not being negative, I’m just being honest with myself.

Like the yellow line in the road, the events of the past few days are a blur. Thursday morning I drove to a follow-up appointment for my ongoing pneumonia. To say that I felt like crap is a huge understatement. I arrived 20 minutes early and it took me 15 of them to muster the courage to walk a hundred yards to the front door of the medical building. The heat emanating from the vents in my truck was warming and sedating me, the thought of walking through the freezing rain that was hiding my Spring seemed a daunting task. I finally got out of my truck and made the walk. By the time I got to the front door, I was done, bent over and gasping for air. People were staring. I walked slowly to the elevator and tried to compose myself.

I checked in and waited patiently to be seen. I wouldn’t be seen for 20 minutes but it didn’t matter, I fell asleep in the waiting room. When my doctor came out to greet me, a mere ten minutes elapsed before an ambulance was called to move me to the nearest hospital. 2 hours later Dr. Quackadoodle MD decided that because my vitals were ok he would ignore all of my Dr.’s notes and send me home as healthy. Discouraged but not surprised, I have always been a medical enigma, I prepared myself to go home. Then a cute as hell nurse came in and said she was moving me to X-ray. I wasn’t sure what had changed but I went with it. Once my X-Ray was reviewed Dr. Quackadoodle MD decided that I would be admitted. Pneumonia in both lungs. DuhWhat do these people think, that I’m here for fun?

The next 4 days would consist of what has become a familiar pattern. I was told about my declining kidney function. No shit… read my chart. I would answer the same questions about my medical history over and over again. Once again read my fucking chart. I would talk to sub-par doctors who knew less about my condition than I did. My repeated requests for them to consult with my Transplant team would go largely unheeded. After several days of antibiotics, surprisingly good hospital food, too many naps and far too much television Monday rolled around. I asked my nurse on her morning rounds what progress I had made and to speak with the doctor on duty. I wanted to know what the plan was. Five minutes later, she relayed to me the doctor’s words…”Do you feel well enough to go home?” What kind of bullshit answer is that?! I wanted to discuss blood counts, creatine levels, a second chest X-Ray to see if there has been a change…not assess myself! No, I don’t feel that much better. Walking back to bed after taking a leak has me sucking wind, that is not progress. It was explained to me that my blood counts had improved and that pneumonia has no real treatment regimen except rest and antibiotics which can be accomplished at home. Good enough I guess, get me the discharge papers.

My takeaways of the visit flash in my mind like the lights of the passing cars.
I’ll probably be back in the hospital soon. Brace yourself.
I received some amazing care from the nursing staff. While I wasn’t thrilled with the doctors, the nurses and aides were great. Caring, nurturing, and professional as well as sounding boards for my lame Dad jokes, they made my stay easier.
I am grateful that my oldest daughter drove 50 miles and picked up my youngest daughter to come see me. Their support was much needed and appreciated.
I am a little perplexed that my youngest son didn’t even text me. Perhaps my years of trying not to worry them have succeeded with him, I’m not sure how I feel about that.
It was the first time my wife wasn’t bedside arguing with my doctors. She was working doubles all week and she’s now my ex-wife. Things have indeed changed.

I arrived home around 7:30 and hopped in the shower to wash the hospital off of me. The activity and steam winded me to the point that I had a coughing fit so violent I vomited in the shower. Hanging my head in the shower, as I hung my head in the ER so many days ago, the only words I heard were those of Dr. Quackadoodle, of the distinguished medical practice Dewey, Not listen, and Howe saying “Do you feel well enough to go home?” reverberating in my head.  Yea, sure. I really wish I had handled that better. I suppose I can address it the next time I’m there. The way I’m going how long can that possibly be?

I’m not feeling bad for myself, I’m just feeling bad. This won’t last, I will feel better at some point, I have to. My posts will be more positive, I promise. This is my process, put it to paper and then put it in the past. Soon, if it is meant to be, the good days will again outnumber the bad.

 

 

 

Day 2 of the 3 day challenge

Now that I know what I’m doing, here are the rules:

1. Thank the person that nominated you.

2. Write one quote each day for three consecutive days (3 quotes total)

3. Explain why the quote is meaningful for you.

4. Nominate three bloggers each day to participate in the challenge

Thanks again to Steve at MSich Chronicles for the nod. Steve is a great writer and a goddamn warrior in the Chronic Illness community.

Here is my quote for Day 2.

I thought about quitting. But then I noticed who was watching
–author unknown
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This quote moved me so much when I first saw it and I was reminded of it today. I have been in the hospital since Thursday. I have had far too much time to think and I’m in a bad place. I have been consistently sick and I have been dwelling on the whole “quality of life thing. Having once crossed the threshold once already I am not scared of death and my thoughts are darker than I care to acknowledge. And then I get the call from my youngest daughter, the concern in her voice so omnipresent, her concern so unabashed, her love for her father so sincere…I was floored.

She is watching me, looking to me for inspiration, to tell her that everything is going to be ok. If anything was to happen to me she would be completely crushed. All of my children love me, but this one is special. I’ll keep fighting, for her.

I would like to nominate the following three bloggers to offer up their fave nuggets of wisdom.

1)The incurable dreamer. I love this blog. Self-effacing, funny as all hell, brutally honest and thought-provoking she really is a must-read. She had me at this post. Check it out, if you don’t laugh I’ll eat a bug. I would love to hear a few nuggets of wisdom from her.

2)Cage Dunn. This is a great blog. A storyteller, a published author and an extremely grounded writer who tells it like it is. I was hooked at this post. Check this blog out, you won’t be disappointed. I’m sure she has some nuggets of wisdom to share with us.

3) Biff Sock Pow. Biff is a favorite of mine. He has a great mastery of the nuances of absurdity. He can make a boring Tuesday into a funny as hell post. And he doesn’t take himself too seriously. Check him out, you won’t be disappointed. He had me hooked with this post.

Check out these blogs and we’ll do this again tomorrow…

Day 1 of 3 quote challenge

I was nominated by my friend and fellow blogger Steve, author of the always inspirational MSich Chronicles for this challenge. I would like to thank him for thinking of me, he certainly gave me a boost during a low point.

Here are the rules:

1. Thank the person that nominated you.

2. Write one quote each day for three consecutive days (3 quotes total)

3. Explain why the quote is meaningful to you.

4. Nominate three bloggers each day to participate in the challenge

I thought of many quotes for my first quote and the temptation to go for the joke was definitely there.
“Indians, what Indians?” George Custer
“What’s this button do?” Christa McCauliffe
“I’m not as think as you drunk I am Ossifer” …ok that one is mine…but instead I want to quote and maybe introduce someone to Paul “Long Haul Paul” Pelland, an incredibly inspirational guy who is on a quest to ride one million miles on his motorcycle in quest of a cure for MS.

his quote is:

“I once was told a cure for MS was a million miles away,
so I thought I would just go get it and bring it back.”

This quote is significant to me on many levels but the appeal is obvious, he is not sitting back and accepting his fate, but instead he is doing something about it. I need to remind myself that there are people like Paul out there. When I feel beat down by my illness he is a beacon of light to get the fuck up and keep fighting. He is an amazing guy and I hope you check out the link I have provided.

I would like to nominate the following three bloggers to take this challenge and share their favorite quotes:

1)The “Wulf”, author of the fabulous Brandewijn Words. I know he has some gems for us. The Wulf is a wordsmith, a bard for our times. His poetry amazes me and on top of all of this, he is a hell of a guy.

2)Sparky Jen. She is one of my favorites. Her blog is so down-to-earth, full of wisdom, energy and positive vibes. And much in line with me, pulls no punches. She’s funny. I know that she has some nuggets to share, she is literally overflowing with enlightening thoughts.

3) Badparentingweb. Justin is a very funny guy, has a wonderful way with words and he has a great story to tell as a young parent and educator of today’s youth. I can imagine that he has some great quotes to make us say “I never thought of it that way…”

that’s all for today, I hope my nominees don’t get annoyed, it’s not an award after all…

the continuing saga of the misplaced morning wood

I’ve posted a few times about my Mom’s boyfriend. I’ve had some fun at both of their expense. I try to keep it light but it’s actually a pretty sensitive subject for me because I have some concerns.

If you have been following me you know the story. My mother has a boyfriend. He is a decent enough guy, my mother likes him and that is what should matter to me. After burying 2 husbands in a matter of 3 years I encourage her to be happy by any means, including a dating website. After enduring several lunch dates with many men who hadn’t updated their profile pics in 10 years, dodging “I love you’s” via email and politely declining very inappropriate advances she settled on Dave. Not knowing, of course, that he carries more baggage than a Kardashian on a day trip.

It didn’t bother either of them that Dave lived almost 2 hours away. They hit it well enough that Dave was invited to stay the weekend when he came over, because of the distance. I warned my mother, perhaps uninvited, that this was a terrible idea. Once the guy had stayed at your house, you have just gone from a casual, “let’s see where this is going” situation to something else entirely. I was right, the shine is off the apple and she sees it. His issues are coming to the fore.

He makes cracks about the “ghosts” of my father and her second husband. He is very “handsy” and touchy-feely. He doesn’t like her wearing her wedding ring. He constantly makes subtle “jokes” about moving in. 2 weeks ago he tried to lay the wood to my mother at 6 am, prompting a big argument and the impromptu packing of his shit and leaving. I was almost happy, although I kept it to myself and focused on my mother. Historically, she suppresses her emotions and I couldn’t tell if she was ok or not. I was hoping that Mr. Grab ’em by the p*%^y was gone for good. In the days that followed, Mom confided in me her issues with him. She was concerned about the groping, the lack of boundaries, the jealousy and, here’s a new one, her lack of physical attraction to him. I told her that she should take advantage of the break they are on and assess how much these things really bother her. What did she do? She made a lunch date with a persistent fellow she had met before she settled on Dave. She likes him a lot.

And then Dave called, begging for a second chance. And she gave it to him. Now she’s confused what to do and I can’t help her.

He is being better, I will give him that. He is less handsy and more careful with the morning wood (at least so I am told I personally stay away from that topic unless it is brought up). But the underlying issues are still there. Mom is still concerned that there isn’t much of a “spark” (they’re 72, compromise will you?) and he is pressing to make long-term plans with her such as traveling and buying property together and making subtle cracks about moving in. Mom wants none of these things with him and refuses to say something. I want to. I know something is up and when I see him I almost want to tell him what she won’t, it’s only fair. Every time I see him I think to myself here comes Mr. Dead Man Walking. I don’t even want to get close to him because I know it’s temporary.

Of course, there’s another reason that I have cooled off on him. Last month he and my Mom went to California. He wanted to visit his son and my mother’s family is concentrated in the same area so it was a good opportunity to see them. They got along well by all accounts and had a good time. When they returned, my mom was curious what her cousin, whose opinion she respects deeply, thought of Dave. The response was staggering. Apparently, they liked him at first, they later found him to be whiny, selfish and a bit petty. One nugget that my mother regrets relaying to me is that he made a point, when mom left the room, to mention that he’d like a little more privacy but her son (me) is always there. I admit, I fixated on that. Mom heard all she needed to hear to decide that he’s not the one and I was just plain pissed.

Apparently, I’m just a 240-pound cock-block to this guy. Excuse the fuck out of me!?! Forgive me for standing in the way of him walking around our living room at 2 in the afternoon swinging his dick like a yo-yo but yes I do live there so fuck you, buddy. I’m sorry that my life collapsed and that I am sick with nowhere else to go but I do live here so deal with it. This revelation has changed how I act around him. Of course, I’m not supposed to know but I am colder than my ex-wife’s side of the bed to this guy now. I wonder if he know’s that it’s actually my house, per her will. Maybe I’ll work that nugget into conversation over coffee someday.

I saw mom earlier today and asked her what she was up to. She has a lunch date with another guy. I’m just going to sit back and enjoy the show for now.

 

 

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.