blog – Page 62 – The Tao of Bill

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…

crack in the foundation

My mother’s new boyfriend has become a weekly house guest. Because he lives almost 80 miles away his routine is to show up on Friday and leave Monday morning. He originally stayed in the guest room but now he’s in her bed. My father’s bed. Heavy sigh. Let it go.

I like him. He’s a big, polite 70-year-old Vietnam Veteran and retired State Trooper. He’s nice to my mother and he and I get along well. Even if we didn’t it doesn’t matter I’m not shagging him my mother is.

Predictably, as his familiarity and comfort level increase, he is showing some additional sides of his personality. A few telling comments containing “folksy racism”, unwelcome input (my favorite), and indications that he thinks he is a bigger part of this household than he really is. My mother is noticing it, is ok with things for now, but I am comfortable that she will handle it if she decides it is a problem. As for me, I am always waiting for the other shoe to drop.

This morning he made a mean comment about our dog to me. Big mistake. I even said “you’re in the wrong house then big guy”. “You’ll go before he will”. He asked if I was serious.

“Hell yea I am. We love dogs in this house.”

I can’t help but wonder what Mom’s reaction would have been had she heard that? I have a feeling that this is only a matter of time.

“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/

thank you

I read you. You read me. It’s a beautiful thing

Friday Knight at Grandpa’s

“Oh my God, it’s like my father is here in this kitchen!” my mother half-laughed and half-yelled as she searched around to see what other mischiefs I had caused while she was out.

I’m a big kid, I love to mess with her OCD. When she goes out I move things around in her kitchen. Sometimes it’s subtle, like moving her snowman candles an inch or so. She notices it. Other times I will switch her containers around. If they were in ascending order shortest to tallest, left to right, I would reverse it. I do a little every day just to keep things interesting. Mom has come to expect something when she walks in. I outdid myself today, I messed with everything. Cookie jar turned around to face the wall. K cups, once color-coded by row on a rack with no empty spaces now rearranged hodge-podge with a pyramid of them on top and many empty slots. The Coffee-maker swapped with the food processor. My best work to date. And the reference to her father was not lost on me, it’s not the first time she’s said it. I act like him, I quote him frequently. I talk about him all the time. I am my Grandfather in so many ways.

My father and grandfather were dual role models in my life. I was very fortunate to have two honest, hard-working family-oriented men in my life. I idolized them both. But I had very different relationships with them. As could be expected, my father had to be the teacher, the establisher of rules and disciplinarian when required. My grandfather got to be the good guy. He always supported what my father told me and never went against him, but he put his own folksy and humorous spin on it. He made everything better. And funny.

I had a tough childhood in many ways. I was a bit mixed up, I lived too much in my own head. But one wonderful childhood memory is the Friday night sleepover at the Grandparents. My mom and dad had a nice social life and it was common to drop me off at the Grandparents house in lieu of a babysitter. I loved it. From as early as I can remember I would walk up the old brick steps. shopping bag of clothes and blanket in tow, where I would be greeted by my doting grandmother at the door. Behind her would be my grandfather smiling wickedly. His eyes, barely noticeable beneath his trademark bushy eyebrows suggesting we were in for some fun. The night would consist of TV and popcorn, playing with their little rat poodle, watching them playfully bicker, root beer floats in the summer and hot chocolate in the winter and going to bed just a little later than I did at home. The fun that my grandfather had in store would come the next morning at breakfast. He would put on a show, and he never disappointed.

Fun, as defined by my grandfather, was causing trouble. My mother had told me stories of the breakfast table when she was growing up. When I was there, my grandmother was the target and I was the eager audience. The game was to drive her crazy, the winning moment was when she yelled at him. It would start as soon as we got up. I woke up early for the show. Grandma would be making breakfast and grandpa and I would be in the small living room, a mere 2 rooms away. She would call him to breakfast and he would ignore her. He would make eye contact with me as if to say “be quiet and watch this.” Grandma would call again and he would yell “Whaaaaat?” Exasperated, my poor grandmother would come down the hall and literally yell “breakfast is ready!” He would calmly say something like “oh, why didn’t you say so.” That was only the beginning. Once seated, the real fun began. She would put eggs in front of him and if they were scrambled he would complain that he wanted over easy. If there was cream on the table he would reach to the refrigerator, sneakily put it away and then ask her where the cream was. He would stack cups on the table to see how high they would go, occasionally knocking something over. All the while he was doing this, smiling wickedly at me, he was watching her carefully to see just how far he could push her. Eventually, she would yell at him to “knock the crap off” and he would be so visibly proud of himself. Amazingly, antics like that happened for years and she never figured out that he was doing it on purpose.

After the shenanigans of breakfast, I would dutifully follow him downstairs. He had a big sink with a mirror and he would shave with a straight razor. After he brushed his face with shaving cream he would catch me admiring him in the mirror and he would wink at me, make a crazy face and pretend he was about to slash his throat with the razor. It didn’t traumatize me, I loved it. I would recap all of his antics, and my poor grandmother’s suffering, to my mother when she picked me up Saturday afternoon. We would compare notes, she would tell me of similar breakfasts, lunches and dinners just like them.

My love for my grandparents would always be strong. They were supportive of me and I made as much time as I could to see them. My grandmother was a strong, willful and sweet woman but she was a tough, off the Mayflower Yankee and was often humorless. She would die at 104 of old age. Her only medical condition was Scottish Alzheimer’s. A condition where you forget everything except who you don’t like. My Grandfather would only see 92. Pneumonia would release some long dormant asbestos he inhaled in the Navy in WWII and take him from us.

He lived a good life. He was a hard-working kid who married his high school sweetheart. Enlisted in the Navy Seabees and fought in the Pacific. He returned home to build a house and start a family with the bride that waited for his return. He would help his wife through 2 miscarriages, the untimely death of his 4-year-old son Charles in the very kitchen that so many happy memories occurred. He carried his family through my mother being in a coma and nearly dying of spinal meningitis when she was 9. Through all of this he smiled, deflected life’s bullets, cracked wise with lines such as “don’t take any wooden nickels”, “see you in the funny papers”, and the classic “I see the light at the end of the tunnel, it’s a goddamn train.”

He’s always with me. My bed is a family heirloom, he was born in it. I carry his pocket watch. I have all of his watches on my nightstand, I also have all of the letters that he sent to my grandmother during WWII. Letters describing his daily life as a sailor, written nearly every day. If not, there was an apology and an explanation. In these letters he tells my grandmother what kind of life he wants to lead with her when, not if, he made it home. He affectionately called her “kid” and he would do so until his final goodbye. They were married 65 years. He was her Knight. http://lindaghill.com/2018/01/28/jusjojan-daily-prompt-january-28th-2018/ Honest, strong, committed to keeping her safe. He would cross the world and slay dragons for her

His humor, his loyalty, his simple approach to life are things that I aspire to have always. I am happy that I still quote him, pull pranks, push people to the edge and do things like openly complain that the brownie pan is defective because it only generated 4 corner pieces. I made that joke last night as I stole the last corner, my mother slapped my wrist and said, “you’re just like your grandfather.” Yup, I’ll take it.

#what if…we turned our thoughts upside down?

I sold cars for a long time. I was very successful, a top performer every month. My customers appreciated my honest, straightforward and knowledgeable approach. I actually had a customer tell me that I changed the car-buying experience for them, that I was the “anti-salesman.” I have never done a job that came more naturally to me than selling cars. It was almost gratifying. Some people treated me like a schmuck, which is tough for the alpha male that I am, but I’m not a schmuck and I handled them like I did everyone else. With courtesy and professionalism. One of my fellow salesmen nicknamed me “the magic man” because I kept turning the impossible customers into the possible. It’s not a Vulcan mind trick, it’s a matter of reading people and controlling your body language.

Unfortunately, the negatives outweighed the positives. The income was very up and down, paying monthly bills could be challenging if you were living check to check. You have to be a strong saver. My wife hated the ups and downs, which eventually drove me to seek more “stable” employment. Loosely translated, she would rather have me make less money but know what the envelope contained as opposed to letting me earn more, which I was certainly capable of. I’ll never understand that mentality.

Another negative to car sales, and I won’t list them all, is controlling the green monster we all know as envy. Much of car sales is luck, sometimes you meet a guaranteed sale, sometimes you meet one that if you work hard enough it may happen, and sometimes you get a giant waste of your time. Having been one of the top dogs in the dealership I rarely had a bad month. I had the occasional dry spell and I would like to tell you that I weathered it well and remained positive. But I would be lying. There were times when I couldn’t catch a break. It almost always worked itself out but it feels like an eternity until it does.

I genuinely want people around me to succeed. I also feel bad for people, at least those that try but need help. I was always willing to share a sale or hand one off to someone who needed it more than I did. I was never greedy. I offered to help new or struggling employees to make them better. I genuinely was in tune with those around me. And some of them absolutely hated me, for no other reason than that I was good at what I did. To those that aren’t successful, a slump is frustrating and when someone around you is killing it, it’s easy to be jealous. Even wish for them to fail.

At my last job, before I became really ill, I took another position selling cars. I was not successful. The reasons aren’t important, there were people and forces that would make it impossible for me to succeed, but it had nothing to do with my personality or technique. I struggled badly, began to doubt myself and began to feel hostility towards those who were doing well. I didn’t want those around me to fail, but their success angered me. I was facing a side of me I didn’t want to and had to ask myself Am I a hypocrite? As the saying goes, I needed to “check myself before I wrecked myself” and change my mindset. But I was alarmed.

Hence today’s “what if?”. What if we turned our thoughts around.?

If I had to decipher the energy I feel around me I would say it is overwhelmingly negative. Social media, the news, late-night talk shows, talk radio and Network news are flooded with hate, bias, and vitriol. We are hopelessly divided, all sides wishing for the others to fail. Each telling the other how wrong they are.

We wish failure on those who disagree with us. We treat them as enemies and engage them in a war. We are so very well versed in what we differ on. Yet we know little of what we share in common. Wouldn’t it be better to focus on what we agree on or have in common? Isn’t it better to stand in unity than to sit in protest? Isn’t the sharing of ideas the basis of growth, or has remaining silent and holding back because it is not “along party lines” the new protest?

We can want what we want without wishing bad things on others. Our success lies in the number of people we can unite, not alienate. Promotions should be awarded to the most qualified, games should be won by the team with the most heart, respect should be given to those worthy of it, and we should wish the best for each other. Things will inevitably go the way it should. If you can’t wish someone a nice day then wish them the day they deserve. And let Karma sort that shit out.

“Be kind to those that you meet, for each is fighting a hard battle.” I live by these words, I regret the times that I have waded into that pool of negativity. I will never again. I wish everyone well and I want everyone to succeed. The road to happiness is not paved with the broken dreams of my fellow man. As I try to live this way, I have an inner peace that is practically struggling to burst from my chest.

I wish you well, because you deserve it. This is who I am now, and this is what I do.

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?

dipping a toe in the water

I have been working a bit lately. I missed it. Not being able to work was so challenging on many levels to me. I need to be productive, to feel accomplished at the end of the day. I recently realized, while sitting on the sidelines, that my identity and sense of worth has always been deeply connected to my vocation. Not working was like a partial lobotomy.

It is a good gig for me. It is only a couple of days per week, I pick the days, and it gives me some spending money without affecting my SSDI claim.

After several months up here, with no real routines to adhere to and a lot of time on my derriere it has been surprisingly tiring to perform fairly menial duties. The cramping and spasms that have hindered me throughout my illness have been severe and I am forced to smile through excruciating pain in front of my new co-workers and caused several sleepless, painful nights.

The bigger challenge I face is knowing and minding my place, which is hard for me.

I work for a very nice man that I have known for almost 20 years. Ben now owns 2 finance companies and a lot of real estate, but I knew him when he was just a used car dealer. I walked into his dealership as an auction rep, we briefly talked and he told me he was all set for auctions. As I turned to leave, I noticed a jar on his desk requesting donations for a little girl with Cancer. It was his 3-year old daughter Sophie. I donated a hundred bucks, wished him well and left.

I would get a call later that day. Ben said, “your donation didn’t have anything to do with this, but come by next week and we’ll talk.” We would become associates and friends for many years, culminating in my working for him and a partner in 2016. We never talked about the death of Sophie at 4, of the fundraisers we coordinated to raise money for her, and of his divorce soon after. When his partner laid me off in 2017, he told me to keep my phone on. He called.

I am doing some pretty menial stuff because that’s what he needs. His finance company is growing, his staff is overwhelmed and a lot of people are doing multiple roles. I have already found about 4 different departments to assist. The problem is that these people don’t know who I am or what my background is. If Ben didn’t tell them neither am I. So I was initially viewed skeptically, then looked at funny when I say or do something that reveals my extensive background in this field. So when I mention my challenge in finding and minding my place, I have to constantly check myself and just do what I am asked to do. Which is really difficult for me.

The office is buzzing. They are talking about me. Ben is already asking if I can work more. My prediction https://wordpress.com/read/feeds/24840312/posts/1746149506 is that I will be offered a full-time position soon. Which will be a real dilemma, because I will have to drop my SSDI claim. That is akin to playing Russian Roulette with my future.

I will explain more in my next post…