health – Page 26 – The Tao of Bill

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.

You don’t look sick…conclusion

This series began as a discussion of what it was like, speaking for myself only, to deal with an increasingly visible illness. It has evolved into me telling my story. I have detailed my struggle to not let my illness define me, to avoid the default greeting of “how are you feeling”? Not because I have a problem with people caring enough to ask, but because I don’t want people’s first thought when they see me is, he’s “the sick guy”.

So, to catch up, I managed to avoid the above problem for the most part through “putting on a good face”. While people knew I had something going on, they didn’t see it on me and it basically went away. My wife called it Denial, and I have to admit it may have looked like it, but in actuality, I just didn’t want to think about it. There was a positive to it, there were people that had known me for a while and were not aware of my health issues that were inspired by my attitude. What they didn’t understand is that I am just a hard-headed guy who has never seen the point of feeling bad for myself. Stay busy, stay productive and hope the sun rises tomorrow. My doctor, post-transplant, would tell me that my denial was the best thing that I ever did. I entered the surgery much fitter and stronger than the typical patient. My wife never forgave the doctor for validating the behavior she detested.

Post-transplant I almost put an end to the “how are you feeling” era. I was up walking 2 days after my surgery, not the week that was recommended. I was back at work in 33 days, not the 90 days recommended. I dropped weight and I had color in my face for the first time. I didn’t look sick. For five years I kept it up. People knew that I was feeling good.

One night in 2016 I was serving a dinner at a Masonic function. I prepared a meal for 85 people all by myself. I was in my element, the kitchen. Moving and grooving, flipping pans and slinging some grub was fun for me. While serving the main course I suddenly grew fatigued and my hands cramped into a claw, making any dexterity impossible. I needed help to finish the dinner, people grew concerned. People who didn’t know me pre-transplant, they never saw the sick me. They wanted to know what was the matter. I knew. It was back.

In 2016 I would lose 48% of function in my new kidney. I would experience symptoms that were highly visible. My cramps happened to the point that I couldn’t hide them, my legs were swollen to the point that I could barely walk. I would contract a lung infection in July that would end up hospitalizing me for the entire month. I was out of work and out of options. I applied for disability. It was finally official, I was the sick guy.

By now, the fight was gone. I had hit bottom. That’s when I began this blog. To reap the cathartic, therapeutic benefits of putting my thoughts to paper. I embraced my illness, stopped trying to hide it and find a way to share a bed with it. Now, it is all about accepting that I have a condition that needs to be controlled, embraced and placed front and center. My reward for finally doing this is I have achieved so much peace of mind. Once you are at the very bottom you have nowhere to look but up.

20 years old…” how are you feeling?”. Good
30 years old…” how are you feeling?”. Ok, why do you ask?
40 years old…” how are you feeling?”. I can’t tell you, so I’ll say great
45 years old…” how are you feeling?”. I would love to tell you, but I can’t afford to. I’m ok
52 years old…” how are you feeling””. I’m alive, thanks for asking.

There’s no escaping it anymore. Some days I feel great, other days I have an episode of crippling cramps in front of 5 old ladies while volunteering at the food pantry. Most people I know are aware that I am pursuing a disability claim. I do my best not to look sick otherwise.

The other day I posted a picture on FB of the mountains of snow we have up here for my MA friends. The first person who responded didn’t ask about the snow, instead, she typed…wait for it…

“How are you feeling?”

I replied, “Fine, thanks for asking”.

the Genie in the bottle

You know the story. You’re walking on the beach, you stumble on something in the sand, you look down and you see what appears to be a vase. You unearth it and instinctively know to rub it. Suddenly a wisp of smoke escapes from the uncertainly secured cap. You drop it and POOF, before you stands a Genie.

He offers you 3 wishes. There is a time limit and once a wish is made it can’t be reversed. What do you wish for?

I often toss silly situations like this around in my mind. The what-if is a harmless exercise to entertain different scenarios. Middle-aged guys often joke about harmless stuff like “if I wasn’t married I could probably shag that hot waitress at the Tilted Kilt”. In reality, unless she has “Daddy issues” and you were lucky enough to be wearing his favorite cologne he would likely be rebuffed with great prejudice. The what-if is also dangerous if you are like me and spend a lot of time dwelling on the past. The 3 wishes scenario is a fun one based purely on its implausibility. Considering that it’s already implausible, why don’t I make it more interesting by doing a then and now?

First of all, do I take care of myself first or do I think of others? 20 year old me would jump at the prospect of free wishes and would immediately think of himself and ask for a large sum of money. After all, isn’t life all about money? Cars, electronics, a big house and nice clothes make the man. Even 30 year old me would have bought into that to some degree and 40 years old me would sure want the house if nothing else.

The current me would also think of me first. I have to. Before I can help others I need to secure my own mask. But the current me is not all about money. It took losing everything that I have to take away the allure of the glimmering pile of gold. 25 years of keeping up with the Jones’, and living check to check in jobs that paid well but robbed me of my soul has taught me the concept of enough. I did enough to give the children the childhood they deserved and held on as long as I could. A bankruptcy, a foreclosure and most of my kidney function later I am embracing enough. Maintaining wealth is too much work. I want a house with lots of wood and animals lying on the many sofas with sunlight streaming in. I want a nice truck that will tow a boat and a couple of snowmobiles. Enough in the bank to not worry about money anymore, but not enough to consume me.

Once offered the second wish, the former me would request Time. Time to work, time to drink after, time to party and not need sleep. A 36 hour day. He had places to go, people to meet and booze to drink. If it was possible to wish to never need sleep, he would have wished for that.

The current me would also ask for time. Not to party, not to drink, not to work. I’ve done that. I want lost time. The time that I spent working late for ungrateful assholes that dangled the carrot of career advancement in front of my nose. The time that I spent stuck in traffic on the way home. The time that I spent on my ass with swollen legs, cramping, and fatigue, drinking beer and watching television. Instead I want all that time back in the form of bedtime stories, tossing the football in the yard, Saturday morning Soccer games, family dinners that I never made it home for. Time spent patiently listening to the rambling stories of an excited child glad to see his/her father. Time to recognize the signs that my wife was struggling and that I was losing her. If possible I want to go back in time, but that’s truly a fantasy.

Now comes the third wish. I know the younger me still had a heart for those around him. He would broadly wish for world peace. He was a good, if not misguided soul. He tried to hide it for many years but for those few that he showed his true self to, he cared.

The current me would also make a wish for the betterment of others. As my third wish I would ask for the validation of Karma, that there be a bus dedicated to it and that I get to be the driver. I would love to personally ensure that all of the good people that put such positive energy into the universe receive it back tenfold. That the kind, the generous, the selfless and the humble are rewarded. And as for the killers, the liars, the cheaters and the greedy…well that’s why the Karma bus has reverse. I need to know, if only for one day that there is some justice in the world.

It’s a nice fantasy, but I know that no matter how many times I walk on the beach barefoot there is 100% chance that I will step on a stingray or HIV infected needle before I do a bottle.

Still, it’a cool to think about.

Hell, what do I know?

I’m a reasonably intelligent person. Even as a kid I knew enough to crawl into the van to make sure there was candy before I agreed to the search for a missing puppy. I followed Bugs Bunny’s sage advice and looked down the barrel of a shotgun to make sure it wasn’t loaded. After all, the worst that could happen is I might get a blackened face right? Smart, that’s me. So, can someone tell me why I have to endure someone lecturing me about my entire family and then telling me I’m wrong when I disagree with her?

Superman is flustered today. While normally able to handle all adversaries with superhuman strength and resolve, he has been vanquished by the largest chunk of Kryptonite to fall to earth…the mother-in-law.

Yesterday she called me from work, supposedly barricaded in a closet for privacy, to discuss my wife and the situation we are in. If you have been following along you may know that my wife and I are pending divorce, living very far apart and our kids are all over the place. My wife is living with her best friend and she has our two youngest with her. It is a bad situation, the living conditions are not good and I worry about the kids living with such a messed-up family. All because my chronic illness finally took me out of the game and the money ran out and our beautiful family was torn apart. Regardless of how many people tell me it’s not my fault, I still bear tremendous responsibility for this and I feel awful about it.

She is the type of person that only asks you a question if she knows (or thinks she does) the answer already. From the beginning of my marriage, she and I have not spoken often because every conversation dissolves into discussing, and her bashing, her own daughter to me. I won’t have it. I may have my issues with my wife but I won’t disrespect her like that. Perhaps their relationship is toxic but I won’t be part of it. My expectations of the call were about the same until she tearfully told me how concerned she is for the mental well-being of her daughter. We had that in common, I have been terribly concerned for her as well, she is clearly depressed and I am helpless to do anything about it. The mother-in-law says she wants to help but doesn’t know if it is the right thing to do.

There is nothing that I can say here. I’m as useless in this situation as can possibly be. I have nothing to offer financially, which is killing me but I can’t suggest that she does. It’s her money, not mine. As she waffled back and forth between helping financially by renting her an apartment and then pulling it back because of “the precedent that it would set” I just sat there as her “Charlie Brown’s teacher” voice prattled on in my ear. All I could think of was the disapproving look on her face when wifey introduced us. It’s embossed on my brain. She was right, I wasn’t good enough for her daughter and now she was going to save the day when it was supposed to be my job. I finally told her that I think she should do what she thinks is right, that I will help as I can and I really can’t tell her what to do. That’s when the rest of “what was on her mind” came out.

She wanted to talk about my children. She is, justifiably, worried about my youngest daughter. I am as well. She lives with my wife, in that fucked-up house with my youngest son as well. She is not doing great by some standards. She does not have a room of her own, she does not have a job because she can’t get a ride to one, and she spends a lot of time alone. We all hate it. But she likes her school, has made a lot of new friends and she is making the most of it. The mother-in-law thinks she is depressed. I disagreed with her, and I was told that I was wrong. I was starting to get annoyed and very territorial. I know my children well because I make it my business to. I changed the subject. She then started on my other three.

My oldest two have lived with her since the move, or as I call it “the collapse”. They both were in college locally and it was nice of her to put them up. Now, my oldest daughter has graduated, gotten a good job and has spread her wings a bit. She has a room at Grandma’s but she spends most nights at her boyfriend’s house. She’s almost 22, I’m fine with it. Yet here I am getting lectured about how irresponsible and rude she is and how unacceptable it is to live with her boyfriend. I was again outraged. My daughter was a 4.0 student, worked full time and saved all of her money. She now has a great job, a full bank account and a nice guy in her life and you’re calling her rude and irresponsible?

Then she starts on my oldest son who just told her that he is moving into an apartment with his friends off campus. I don’t like it, I think it’s too expensive and I asked him not to do it. But he’s almost 21, has a good job and he wants to do it. But here I am being told how irresponsible he is, how he is an unfocused and lazy student. The blood pressure was rising again! My son has a 3.5 GPA, has worked every weekend since he was 16, has plenty of money in the bank and she should be glad he’s moving because she always complains about how late he comes in! He is a great kid and she was really pissing me off now. But the call wouldn’t be complete without tearing up my youngest son, who she never even sees.

She started to tell me how many “issues” my youngest son has. How he jumps from thing to thing, has a poor attention span and is a terrible student. I really had enough at this point. I told her that he is fine, in fact, he is just like me at that age. But she was insistent on continuing. Finally, amazed that I had lasted this long, I told her to stop talking and listen.

“Do you honestly think that you know my wife, your daughter, as well as I do? For 29 years I have been with her through everything while you two have done nothing but argue the entire time. Do you honestly think you know my children, my pride, my legacy, my only real accomplishment in life as well as I do? I tolerated this conversation because we’re both concerned about your daughter. Help her, don’t help her it’s up to you. But now I know why you and I don’t talk often. You like to be lemon juice on a paper cut.”

“Well, I’m sorry you feel that way,” she said. “I don’t feel better at all after having this conversation”.

“If it helps, I feel worse than I did. If that’s even possible”. We said our goodbyes and she went back to work.

She left a message for me last night apologizing. I’m afraid to call her back for fear of how much of my remaining dignity it will cost me.

You don’t look sick…part 3

Revealing to my wife and family that I needed a kidney transplant was a turning point. My children were confused and upset. I told them everything would be fine. My wife painted a much more grim picture. I was furious with her for being so negative, at one point during an unfortunate argument she blurted out “it’s ok kids side with him he’s going to die and you’ll be stuck with me”. It was a brutal comment and hard to bounce back from. I explained to the kids that the best case scenario was a transplant, the worst would be dialysis. Not ideal, but still alive. I kept to myself the attitude that dialysis is the WORST option, giving me zero quality of life. It was a stressful time, only being compounded by the weight of mind-boggling debt and pending foreclosure. Which is historically great for blood pressure.

The backlash on me was partially deserved. By minimizing my condition I did help myself cope, but I alienated my support network. By avoiding being doted on and being treated differently, and most importantly having my family worry about me, I forced them to come to grips with something in a short amount of time, that I have had most of my adult life to deal with…that I may lead a short life. But at that point, I still couldn’t tell people how I was feeling.

At work I couldn’t escape the attention, it was a big story. In late 2009 I was hospitalized for a serious infection that was renal-related. My manager came to visit me on a Saturday with a stack of magazines for me. He said, “looks like you’re going to need a donor soon, huh?” I nodded in agreement. “What if I told you that we might have one? Deb approached me yesterday and wants to be tested”.

I was of course thrilled. She would prove to be a match and, well you can guess the rest. The company made a story out of it. The local CBS affiliate station came to do an in-office interview with Deb and I. For weeks, complete strangers would approach me and say “Hey I saw you on the News! How are you feeling?” People who knew me at the auction and other areas of my life would say “Hey, I saw you on the news. I never knew. You don’t look sick”. Heavy sigh…there was no escaping it now.

After the transplant, it was the new normal. I am blessed to have so many people care about me. The outpouring of support was amazing from friends, family, social media and company connections. My company threw a huge fundraiser for me, everyone knew my story. It truly renewed my faith in people. But post-transplant I was riding a wave, I felt great and I wanted to put 15 plus years of feeling like shit warmed over behind me. I worked out, I hiked, I bought a bike and then a mountain bike. I found a group on Facebook of local mountain bikers and I showed up. I made a bunch of great friends. One day, after a particularly grueling ride I peeled my sweat-soaked shirt off to change into a dry one and there was my enormous scar for all to see. One guy inquired about it and I gave him the brief breakdown. “Hey, I saw you on the news. That’s quite a story. You look great man!” Now that’s what I was going for.

Now let me refocus for a moment. This series is not about being happy or glad or grateful if people ask you how you are. It is about being known by your illness. When your illness defines you. When people think of how much it sucks to be sick…they think of you.

So when I constantly reference the times when people say “You don’t look sick” or ask “How are you feeling” it puts a very particular set of reactions into place. So far in this series, I am describing the birth of Superman as a coping mechanism. As opposed to the earlier-in-life Superman that tried to save the day and fix everything. He was born because I simply couldn’t afford to look sick and I could never actually tell anyone how I actually felt.

My family relied on me. I needed to be the Dad and husband I promised to be. I needed to be strong. So I covered it up, in a way I denied my illness. For them and for myself. When I was really sick, I had to say no to a 10-year old and a 9-year old who asked their Dad to play football in the front yard with them. I couldn’t do it. I couldn’t get off of the sofa. The look on their faces haunted me. After that, I forced myself to do it or I found a way to avoid it. They didn’t need to know so I didn’t tell them.

With my employer and co-workers I couldn’t answer the “How are you feeling?” question without committing career suicide. It may be against the law to discriminate in the workplace against a person with illness but it doesn’t offer much advancement. I had a huge job that other people wanted and a salary that I needed to maintain. So if my Manager said “How are you today?” there was no reason to give it a logical progression to “How are you feeling?”

I lied, I denied. I feel great thank you. I don’t look sick because that’s the point. It’s a whole lot safer than answering like,

“Well thank you for asking. This morning I barely made it to work on time because I was up all night with spasms that no doctor can diagnose. I threw up in the shower this morning and I am wearing a pair of shoes 2 sizes larger than normal because my feet are so swollen I can’t get the others on my feet. I am really fatigued right now for no reason and I am hardly in the mood for your fucking bullshit but here I am…AREN’T YOU GLAD YOU ASKED?”

to be continued

You don’t look sick…part 2

“How are you feeling?”

I ended the first installment by recalling my brief bout with Testicular Cancer in the late 90’s. It was a formative moment. During my recovery, albeit a short one, I did some serious soul-searching and eventually re-evaluated my entire life.

I decided to explore the job market outside of my little comfort zone. I envisioned all of the upcoming moments with the children that I would miss due to my schedule. The restaurant life was indeed getting old, my back and legs were my livelihood and the benefits were abysmal. When I was forced to take a weeks vacation to recover from Cancer surgery it became painfully obvious that I needed a job using my mind and my degree that also had decent benefits. While rehabbing, I applied for and eventually achieved the job that would be the stepping stone to the best job of my life.

I also realized that this was my second real brush with my mortality. If you have been following my story, you know that I have kidney disease. I have never mentioned my motorcycle accident.

Just ten years before I was hit by a drunk driver. I was hit on the left side and pushed off of the road. I went off the bike, over the bars into a guardrail. I broke 3 ribs and fractured 4 vertebrae. My only memory of the incident was gasping frantically for breath and blacking out. My next memory was waking in the hospital. I had gone into shock. I spent 3 weeks in the hospital, followed by wearing a back brace for 6 months, and I was unemployed. This is the event that led me to the restaurant. Now 9 years in, I was “Billy one-nut”, still dealing with back issues from crashing my bike, and beginning to experience regular symptoms of my burgeoning kidney disease. It wasn’t debilitating at this point, but it was becoming a part of my daily mindset and not just an “episode” here and there. It would also be the beginning of the “how are you feeling”? phase that we with chronic illness deal with.

First, and I think that I speak for most of us with chronic illness, let me say that I honestly appreciate someone inquiring as to my well-being. It beats the living hell out of the popular greeting of “’Sup?” any day. It shows consideration and familiarity. Speaking only for myself, when people routinely greet me with a “how are you feeling”, it’s official. I’m the sick kid. By my logic, which is admittedly questionable at best, my illness has defined me. I was not going to let that happen. I kept at it at the gym, I (politely) dodged questions about my health, walked upright even when hurting and eventually it went away.

It worked for me. My stubborn, bullheaded nature allowed me to fool my kids, appease my wife and keep my job. The family knew but didn’t dwell on it because I didn’t give them a reason to. My boss didn’t know until it was revealed in 2008 that I would definitely need a transplant.

IGA Nephropathy is a rare kidney disease, and like me it is an unpredictable smartass. It lays dormant for years on end, giving you the illusion that it’s not a big deal and then it pops up, robs you of a huge amount of function and says “remember me”? My esteemed team of physicians had done nothing up to this point other than manage symptoms, for IGA is so unpredictable they really didn’t know what would happen. In 2008, when it was confirmed that I would definitely need a transplant I had to tell my family and my employer.

My wife’s reaction was priceless. True to her personality, the “how does this affect me” gene reared its ugly head and she accused me of deceiving her. I have forgiven her since but I will never forget her response.

“If I knew you were that sick I never would have married you.” Normally a stalwart person, that one stung me. She apologized but it was too late. Her rationale was that I was going to die and leave her a widow with 4 heartbroken children. I reminded her that I had warned her when we began dating that I had an uncertain future health-wise.

My employer was very supportive. In fact, they embraced it. They would prove to be one of the only bright spots of the entire ordeal. The downside…everyone knew what was going on, I was now the sick guy. The day had come where every greeting was the default, dreaded

“How are you feeling?”. Here we go

To be continued…

“you don’t look sick”…part 1

I went to my local hospital yesterday morning for some bloodwork. I have a “standing order” for the same tests monthly to monitor my kidney function, or as I call it the “how much have I lost this month” tests. The laboratory waiting room was small and crowded, I swear the room was built as an afterthought. I checked in, surveyed the room, saw a lot of sniffling people and the germaphobe in me chose to stand in the doorway until called.

When called, I trudged through the sea of inconsiderately outstretched legs, carefully dodging the onslaught of germs that I sensed were targeting me as if I had disrupted a wasp’s nest. After my blood was drawn I was led to the door and the Nurse said, for all the waiting room to hear, “ok now head over to Oncology they’re expecting you”. All eyes were on me. As I again navigated the sea of people standing between the door and my exodus an elderly gentleman softly said to his wife,

“he doesn’t look sick”.

I thought about responding but decided against it. Maybe it was the word “Oncology” that threw him, he didn’t know that my iron infusion was administered in the Oncology lab. After I checked in to the Oncology clinic, I sat down and reflected on a similar incident many years ago.

I was treated for Cancer in 1998 at age 31. At that time, I was the proud, doting father of an 18-month-old little girl and my wife was pregnant with my son. I was working full time at the restaurant at night, my days consisted of playing with my daughter and hitting the gym during her morning nap. I was in great shape, the best of my life. I was training for power at the gym, moving a lot of weight for at least 90 minutes a day. One day I was training legs and I attempted a press of 1300 pounds. It was a lot of weight, the kind that requires a guy on each side of the machine to bail you out if your knees pop off and stick to the ceiling. I completed 3 reps, rolled off of the machine and immediately threw up all over the floor. The pain in my core was excruciating. I called my doctor immediately. After I was examined, my doctor asked what my plans for the afternoon were. I told him I was going to work. “Call in sick,” he said and suggested that I call my wife next. I knew it, Cancer.

That nagging pain in my groin was actually a golf-ball sized tumor. It was my favorite, “Lefty”. “Lefty” had to go, regardless of whether it was benign or malignant. My blood work had already indicated that it was malignant. I was asked if I wanted a prosthetic Lefty, I declined. I was married after all, who is going to see? As an aside, I would like to borrow Mr. Peabody’s time machine right about now.

The surgery was scheduled for 10 agonizing days later. To know that you have something inside that is silently trying to kill you and having to wait 10 days to have it removed is torture. I was incredibly aware of it, as if the creature in Alien was planning its moment to pop out of me and wreak havoc. In the meantime, I went to work and acted like everything was just fine. I told one person what was going on, my boss, because I needed to schedule the time off for surgery. He told some people and sure enough, it got out. People started treating me differently. As the kitchen clown, I was a lightning rod for jokes and abuse. My days were always full of banter, it made the day pass. We were all like that. Now, everyone was being so fucking NICE to me I couldn’t take it. I was now the sick guy. People get like that when they hear the “Big C”. There’s nothing they can do and they don’t know what to say. I let them do their thing and I did mine, I deflected it and moved on.

The surgery was successful. And timely. The words “Just in time” were used in conversation. Now in a specimen jar, Lefty was indeed malignant. I would not need chemo, only a long steady regimen of Radiation therapy to my abdominal region.

The Radiation therapy would prove to be a breeze for me. My Oncologist was noticeably shocked at how well I handled it. He would tell me of how patients had to stop treatment due to fatigue and nausea. I was going to the gym and then work after a mere week after my surgery.

Work would prove to be difficult, but not for the reasons you would expect. My strength wasn’t there but I was able to do my job. If they let me. My co-workers, who normally abused me were offering to help me lift things, giving me easier assignments, asking me if I wanted to leave earlier. The worst thing of all is they were being so nice still. No abuse of any kind. I couldn’t take it so one very hot August night I decided to put end this nice stuff.

We were all sweating, it was 95 outside and we were inside a kitchen with 8 ovens, 4 fryolators and 12 saute stations going full tilt. I was sweaty and miserable and I knew I had to pick my moment. I walked into the back kitchen area during a lull and they were all there. I dropped my apron to the floor dramatically and said, “Jesus, I’m sweating my BALL off here!” They erupted in laughter, the tension instantly disappeared. My buddy Joe looks at me and says “so it’s on?”

“Yes, it’s on. Stop tip toeing around me I hate it!”

The abuse was rampant and apparently retroactive. “Billy one-nut” was born. And I loved it, things were back to normal, finally.

One day soon after, as I was leaving the radiation center, I hugged my dear nurses’ goodbye and walked through the waiting room. As I passed an elderly couple, the husband leaned in to the wife and said: “he doesn’t look sick.” I stopped, turned to him and said’ “that’s the idea”.

To be continued…

no soup for you

It’s hard to be in a good mood today. This is one of those days that my “invisible illness” is pretty goddamn out there for the world to see. My transplanted kidney is going through another “nephrotic” episode. Loosely translated, it leaks. The end result is my legs are swollen. So badly that you can see it through my pants (insert your own bad innuendo here). It makes even walking difficult. But I’ll Foghorn my way through it.

My doctor told me that I don’t need to limit my fluids, that only 1% of my kidney function is dedicated to processing exceed fluid. I have to limit it anyways, at least until this passes. Instead of drinking a gallon of water I may as well just strap it to my leg.

Time to watch my diet even closer. Really limit my sodium intake and be selective. Bland, boring foods until further notice. Bottom line, if it’s scrumptious then I can’t eat it.

https://lindaghill.com/2018/01/30/jusjojan-daily-prompt-january-30th-2018/

The elephant in the room

It’s time to address https://lindaghill.com/2018/01/26/jusjojan-daily-prompt-january-26th-2018/ the 800-pound elephant in my living room. This Superman shit is getting out of hand. It’s a real thing (obviously, it’s the name of my blog), and it’s getting in my way and clouding my judgment.

There is good Superman. Like the time I was driving my daughter’s friend home. She and my youngest were in the back seat, we were in traffic and when the light turned Green the horns started blaring. Cars started going around the lead car and I realized that the car was stalled. My youngest elbowed her friend and said “watch this’ as I opened my door, in traffic, ran over and helped push the disabled car to the side of the road. After I knew the driver was all set for a tow I got back in the car. I asked my daughter what she had meant by her comment and she said: “I knew you would help that car.” I pointed out to her that no one else did and she said, “Dad, it’s a good thing.”

There have been many of those. I won’t apologize for them. Then there is the “bad” Superman that takes on too much and sacrifices his own health in the process. I have been guilty of that as well. Would you believe me if I told you, and I can’t be more honest than I am at this moment, that I really don’t think about what is good for me? I’m not looking for a cookie like some deadbeat Dad on Springer. I really don’t care what happens to me. The only pleasure I get out of life is helping others.

When my health was deteriorating severely pre-transplant I managed to put up a serious fight. To not worry my kids, to keep my job and continue to support my family I pushed myself too far. My boss praised me, my wife chastised me. Bad Superman was born. I like how it worked out. Denial wasn’t just a river in Egypt, it was a great way to get to the end zone. I found mental strength in the absence of physical.

As I came out of the fog of anesthesia post-transplant, my eyes strained to see a doctor hovering above me. He asked me when I had last worked. I asked what day it was. Tuesday night? I responded that I worked until noon the day before. He asked if I knew the criteria for dialysis (which I stubbornly refused to do). I did not. He informed me that I was ten times over the limit for dialysis and he was amazed that I didn’t have a heart attack. That explained a lot but I didn’t really care, I was alive now right? The doctor left the room shaking his head. He wasn’t impressed. He thought I was just an irresponsible jagoff. He was probably right, but again, it worked for me.

On recovery, I was consumed by the need to get back in shape and pay back the gift I had been given. In that order. I worked out like crazy, I even did P90X. My Transplant surgeon said, “Kidney transplant patients don’t do P90X”. I said, “they do now.” Once I felt good, I began to help other people. I volunteered, I led kid’s mountain bike expeditions. I joined the Freemasons to really put a stamp on my commitment to be a better person and help others. I was a better father, friend, coworker and overall person. I tried to be a better husband, but that ship had sailed already. In the midst of this quest for purity of the soul, I got lazy about my medications and I had a rejection episode. A hospital stay and enough prednisone to kill a stampeding Rosie O’Donnell later I was down about 15% kidney function. Bad Superman. Lesson possibly but not likely learned.

Here and now, in the present, I have found a day that I can’t save. I’ve finally found my true Lex Luthor. My wife. Since we agreed to divorce, she has been noticeably depressed. Her best friend, who my wife famously “picked” over me as her confidante and number one, is telling me that something is wrong with her. While highly tempted to tell her, as the anointed yin to her yang, to fix it herself I am instead terribly worried. Her living situation really does suck. She lives with the best friend, the household is a real disaster. Between the lack of privacy, the new and increasingly frequent arguments with each other (which my wife is completely unequipped to handle), and lack of money she really is slipping into a depression. I saw just how bad it was Wednesday night. At my daughter’s 16th birthday of all places.

Instead of a “sweet 16” party she deserves, with a hundred guests fawning over the wonderful, sweet, caring and amazing girl that I would actually die without, we had a small gathering at the aforementioned house of horrors. I hate it there but I gladly drove 2 hours there. I wouldn’t miss it. My 2 oldest were unable to make it and I walked into a true shit show. My wife was livid, she was fighting with her friend and for some reason barely talking to me. I managed to get her alone for a minute and stupidly asked her if she was ok.

“Fucking great, living the dream.”

I fumbled a bit and then told her that I am used to her not being happy, but I’d never seen her depressed. I told her I was worried about her. She told me that there is nothing that I can do.

We tabled it for the moment and went on to celebrate my daughter’s special day. God bless her, she managed to make the most of it. She’s used to being disappointed I suppose. I showed her the blog post I wrote for her the other night (in confidence). She cried, in a good way. In the absence of material things, I made the gesture of words and she appreciated it. When I left, I gave my wife half of the measly earnings I had made this week. She gave me a weak thank you, a half-assed smile and I left.

“There’s nothing you can do” echoed through my head the entire ride home, haunted me in my sleep and was waiting for me when I awoke. The fact is, there is something that I can do. I can go back to work. It is very likely that I will be offered a full-time position in April. If I get a good enough offer, it may be time to cancel the SSDI claim, take care of myself and hope for the best. I would be able to give my wife enough to get a place of her own, or at least make her situation better. I would be doing something, instead of resigning myself to accepting things the way they are. I just have to determine the cost. It could be up to or in excess of the limitations of my body.

I have known my wife for 29 years. Married for almost 23. She raised four amazing children. Despite some notable wrinkles, she has been a good wife for the entire time. I can’t leave her like this. I know I’m not well. but when has that ever stopped me? As a man of integrity, the right way is the only option and I can’t help but feel that I am not doing all that I can.

Is this the true test of my lack of concern for my own well-being? I know that at least one of you out there is going to agree with this…in order to save others, I have to put my own mask on first.

Dammit Superman, what are you going to do now?

Colour my world

jjj-2018

Dedicated to my beautiful youngest daughter on her 16th birthday

at the low point of my life

with no desire to fight

the weight of a trillion worries

pinning me to the bed

the view from my room

as grey as the day before

the world bereft of beauty

my interest in it fading

bottles, needles

so much goddamn beeping

then you entered the room

my heart began leaping

“Get better Dad, I love you”

you said with a nervous smile

I suddenly felt it

the room suddenly had colour

life was worth living

the difference between color and colour is “U” (you)

https://lindaghill.com/2018/01/23/jusjojan-daily-prompt-january-23rd-2018/