Have we met? I’m easy to remember. My favorite word is no.
I don’t know when I became that guy. I’m pretty sure I hate that guy. So how did I become him?
That’s rhetorical I suppose. I know how it happened. I have a little “Noid” on my shoulder. Remember the Noid character from the Domino’s commercial?Mine sits on my shoulder, not unlike the shoulder of everyone with a chronic illness. This particular Noid gives little to no shits about the timing of your pizza delivery, he only cares about your energy level and ability to live a normal life. His biggest role consists of listening in on your life to see what invitations and opportunities arise and as you are considering attending he leans in and whispers in your ear. “Nooooo.”
I vowed to never listen to that Noid. I was different than others with Chronic Illness. I was more optimistic, more determined, stronger than others and I would continue to thrive. It is becoming more apparent daily that it is an illusion, I’m no different than the rest. At least not anymore. Now, my Chronic illness has the ultimate and final say in what I commit to.
It’s not that I don’t want to go out and do things. In fact, sometimes when I get an invite I mentally envision myself there, doing it, rocking it even. Then I remind myself of the harsh truth that only those with a Chronic Illness will understand. “Yes, I feel ok now but how will I feel then?” That is the big question. And, while I can only speak for myself, it leads to a lot of no’s.
The Noid looms in the shadows. He doesn’t hide, his presence is known. For the longest time I knew that I had his location narrowed down, confident that he would stay where he was, that he wasn’t coming for me.
It happened real fast. I went from bouncing out of my chair after dialysis. I got up early and went to bed late. I was working out. People invariably were surprised when they learned I was sick. I was fooling everyone. Even myself. Then I started showing it. My walk went from a confident gait to a slow but determined straight line. I was slow to get up. My legs were constantly cramping. My complexion paled. I knew it was happening but I was powerless to carry on the charade. People began to ask me in earnest if I was ok.
When I said I was fine…those who knew me didn’t believe it. I still refused to open up about it because I just don’t do that. They grew frustrated with me. They don’t get it, it’s not their journey it’s mine. It’s not their story to tell, it’s mine. I will tell it again but right now I’m too tired.
Always the introspective one I have looked hard at my current mindset. It’s not that I’m unable to do things, I just don’t want to. Anything outside of my recliner is no longer my comfort zone. I know how far the fall is from upright into my chair, outside the house I can’t measure or prepare for the fall. It’s happened too many times lately; I’m out and all of a sudden I just hit a wall and sometimes that wall hurts more than it’s worth.
I’ll get back on that figurative horse someday. I always bounce back. At least I always have before. I can hope. But until that time, I am taking off the Superman shirt and replacing it with a simple black T shirt with a giant N on the chest.
I never talk about it but it’s always on my mind. I miss working. A lot.
I was always a guy whose identity, and unfortunately sense of self-worth were tied into my job. Not only that I have a respectable job, but also fulfilling and gratifying. I took this notion way too far, I was never able to leave my work at the door when I left. When work was good, I was happy and it spilled over into my home life. When it wasn’t, it affected my entire ability to function. I had heard the term “work to live, not live to work” but it just didn’t apply to me. I was a workaholic in that it permeated every aspect of my life, often with major ramifications.
I rode the roller coaster for years. It seemed to have started when I met my wife to be. I was working at a restaurant. I was merely a laborer making a meager living but I suppose I was happy. Shifting between dishwasher and part-time line cook in training I was recovering from a major motorcycle accident, trying not to think about having recently dropped out of college and making just enough money to drink myself to the point that I was unable and unwilling to think about my problems. Occasionally I reflected on my life just enough to recall my favorite line from Animal House:
But I only reflected on it long enough to get a little chuckle and then I resumed my ways. It wasn’t until I began dating my future wife that I realized, or was told that I could and should do better. It wasn’t until I got Testicular Cancer that I took my vocational career more seriously and as I was recovering from the surgery I filled out some applications. I landed a job at Enterprise Rent A Car. It would require that I work 7 days a week, 2 at the restaurant to keep my health insurance but I did it. The job sucked but they promised that any employer will jump at the name of Enterprise on a resume.
They were right. I landed a job at a Salvage Auto Auction. Everyone in my training class was from Enterprise. This job led me to the wholesale auction industry and it was there that I would stay for twenty years. Sales, Sales Mgmt., customer relations, budgets, administration, team-building and logistics appeared on my resume. By the time I met a guy at a cocktail party looking for everything on my resume I was ready for a amazing position for a change because everything to that point had sucked. My previous jobs had been good enough to keep me balanced at home and I liked them just enoughto keep my self-esteem balanced. But I wanted and deserved better.
The new job would prove to be the one that actually made me feel like an all-around success. I was good at it. Better than my new boss ever suspected I could be. My owner referred to me in front of his high-powered and very successful buddies as “the best in the industry”. I was an appraiser, a master at being a liaison between the higher-ups and my customer base. I solved problems. I saved money. I was busy…
I found solutions and implemented systems and just often enough to satisfy the soul…I actually helped someone occasionally. My work life and home life were in perfect balance (except for the fact that my wife was never happy and my marriage was going to hell).
I began to spend more time at work. It was my happy place. I was surrounded by people that made me happy and away from the yelling and the constant demands from wifey that I make more money. Perhaps one of my favorite things in my office was my shrine to my upbringing, the top shelves of my enormous bookcase that held my tribute to the amazing family members that kept me going, with a special nod to my father and grandfather.
The Opus doll, well that’s a no-brainer. Bloom County was always a favorite. The Charlie Brown and Looney Tunes mug, well that’s my childhood in a nutshell. The baseball, my son gave me the game ball after he lined his first double over an 11 year old’s head in Little League. The model cars never failed to make me smile as I am a shameless car lover. The model trucks were a makeshift shrine to my father. The license plate was from 1929 and was once on my grandfather’s first car.
While work was mostly good for me, I often found myself staring at one or more of those objects during the course of the day. They made me happy and provided a little slice of home when I couldn’t be there and a reminder of who I was and where I came from in moments of weakness.
When I lost my job due to illness, packing those items was the most difficult thing for me. I loved my shrine.
Those items now sit in cold storage along with my career and my self-worth. I no longer have my career to give me an identity. My value to society seems somehow less. I no longer make the same difference in people’s lives. Nobody, including my children, seem to need me anymore. Most of the advice I give my children seems unsolicited as they are older and finding their own way. Of course they come to me sometimes but I’m used to being a constant resource at work and home.
I need to find another way to evaluate what exactly on earth I am meant to do before I die of pure, abject boredom.
There was only one person in the waiting room besides myself, a woman sitting patiently in the corner. This particular waiting room is not a very chatty one, it is mostly populated by very sick people. It was not lost on me when I was under their care that I was one of the healthier ones there, I was only getting shots and infusions for anemia and other renal-related issues. Most people in there were getting chemo. I respected them and consequently felt a sense of reverence towards the woman in the corner. I took out my phone and played around for a while.
“Do I know you?” she asked. Startled, I looked up from my phone. I wanted to give my usual response to that question and say “Do you watch porn?” but I restrained myself. “I don’t know. Maybe.” I replied We talked for a few minutes and it was determined that she didn’t know me. It was at that time that Lauren poked her head out the door and I politely excused myself and went to talk to her.
Lauren brought all of the ladies of the center out one at a time. One by one they asked me how I was doing and what I had been up to. I gave them all the Readers Digest version and I kept it very positive, I hate to burden people with my problems. I touched on dialysis, some of the issues I have dealt with and my possibility of transplant in my most self-deprecating, humorous, and matter of fact manner. One by one they excused themselves and went back to work. Except Lauren. She stayed. She wanted me to tell her the truth. So I did. But I still did so in a positive way. Then she had to go back to work so we said our goodbyes. I jokingly asked her if she was still married. She laughed, wished me well and then gave me my fourth huge hug of the day. I turned to leave and as I did my sole companion in the waiting room said something to me. I don’t remember what but it was enough for me to go over and sit down.
What I remember was that she commented on what she saw and heard. She was taken back by my positivity and remarked that it was just what she needed that day. I decided that it was a good idea to stick around and talk to this very nice woman.
She told me her story and I told her mine. She was there for treatment for Rheumatoid arthritis. I didn’t have to tell her that I knew how bad that can be. I listened intently as she told me about her RA and how it has affected her life. She was very brave and I knew immediately that like most with a chronic illness she was a fighter. But something in the way she was talking told me that she was wearing thin with it and like most of us, she was looking for a good reason to keep fighting. As the conversation continued I realized that I was right. She actually said it, that she needs a reason to go on.
I don’t consider myself the best listener. In theory I am, I want to hear what people have to say but my problem is that I want to interject, offer advice. All because I want to help. But in this case I just listened to her. She clearly needed to talk to someone. I was momentarily taken back by the similarities in our situation. One big one…give me a reason to feel optimistic. My take on this is simple, looking for a reason to go on isn’t merely to counteract those dark moments, which all people with chronic illness experience, it is much more, it is looking for something that is stronger than the nagging urge to give up.
When it was my turn to speak I seized upon one thing that she spoke of that piqued my interest. Purpose. “Ok. You noticed how the nurses all knew my situation and commented how well I’m doing with everything? That’s not an accident. It’s my purpose, my role in life. To be the one that makes that caregiver a break from the sad and miserable people. To be the one that shows that attitude matters. And do you know what else, it’s all an act sometimes.” “It is?” “Sure, often I feel like absolute crap but I tell ’em that I’m doing great because that’s what they want to hear. It helps people. Some know better but they respect what I’m trying to accomplish. It’s my purpose in this world, unfortunately not a paid position, to offset the negativity. It’s a role I fell into but once I did I realized that it was something that inspires others into being more positive. “It’s hard sometimes” she said. “Believe me, I know.” “Well, I find you inspirational” she said. “Well, I find you inspirational as well.”
At that time the door opened and she was called in for her treatment. “Well, it was nice talking to you” I said. And it was at that time that I received my fourth big hug of the day.
Here’s the rub. I shouldn’t have even been there that day. I was there the day before to do my lab work and I hadn’t noticed the caveat about 12 hours fasting before doing it so I dropped it off and went home. So is it a coincidence or destiny that I would come back, foul mood and all, to see Nichole who wasn’t there the day before; Lauren that didn’t poke her head in while I was there; and meet my new friend?
I don’t believe in coincidences and I don’t believe in destiny. I do believe that sometimes things happen for a reason. I got as much out of talking to her as I think she got from talking to me. It was a very good use of my time.
Be open to opportunities to talk with someone who may be down. Be nice. Find your purpose. When you find it…go with it.
Where were you today? Me? Amazingly, inexplicably and entirely uncoincidentally I was again in the exact right place at the exact right time.
Today started as most days. My alarm went off at 445 and I laid in bed, enjoying the snooze cycle that grants me a 9 minute reprieve from the agony of getting up. In order to make it to Dialysis on time I have to be out of the house by 5:10. Of course I got out of bed at the last minute and I didn’t know that it snowed the night before. After removing the snow and ice I was running behind. I was in a bad mood.
As it turned out the clinic was running behind and it didn’t matter that I was late.
It was a miserable treatment. The needles hurt like hell from the minute they went in. The machines seemed to be beeping and pinging more than usual and I was really annoyed. Amazingly I managed to fall asleep but after a mere hour I woke up in agony. I had flinched (spasmed) in my sleep and one of the needles infiltrated my fistula. In laymen’s terms the needle punctured the wall of my vein. It’s excruciating. And it also meant the end of the treatment. They had to take me off so that I could fight another day. I left 2 hours early with a sore arm and a big blood stain on my expensive new sweat pants.
As I got into my truck, fuming, I remembered that I had lab work to do at the hospital. It was up the street so I decided, despite my mood that I needed to get it out of the way. I walked into the hospital, went to the lab and went to the window to make sure that they had my order. They did and instructed me to wait so I sat down. It was then that the door to the lab opened and it was Nicole.
Nicole the lab tech is a ball of beautiful, charming and sweet stuffed into a tiny 5 foot 1 inch package. I haven’t seen her since I started dialysis (the clinic does most of my lab work now) and I was really happy to see her. As it turns out she was happier to see me as she gave me a huge hug.
“Oh my god, we were just talking about you the other day!” she said. “Anything good?” I replied. “Only that we were hoping you were doing well. We miss your humor around here.”
She completed filling the 8 (yes, 8) vials of blood for the labwork, walked me to the door and gave me another hug. At that point my day had transformed into a good one.
Then it got better. Lauren from the infusion center walked in.
Lauren was once the topic of an entire blog. Gorgeous, smart, funny…and married. That little detail always left me unfazed and when I was getting my infusions I shamelessly flirted with her. She didn’t mind, in fact I think she enjoyed it. Here she was, discussing a patient with Nicole. As she turned to walk out she instantly recognized me. I was awarded my third huge hug of the day. “I can’t believe you remember me” I said. “What? Forget you? Never.” “Is that a good thing?” I inquired. “Everyone always asks about you.” “Can I go in and say hi?” “Sure. I have to go take care of something so wait in the waiting area and I’ll come out when I can to get you.”
I followed her to the infusion center and patiently waited.
It is not only a new year but also a entirely new decade. As I mark the halfway point of my 5th decade on this glorious spinning ball we call earth I have to say that the last ten years have easily been my most tumultuous and unpredictable to date. It is said that it is better to forget the incident and focus on the lesson. I need to do just that. If I was to take anything away from the last ten years, it is that I have learned a lot of lessons.
In 2010 it was determined that I would need a Kidney Transplant. Without it, dialysis would be my only option. One that I absolutely hated. The lesson was that, despite my remarkable skills of denial and putting on a brave face, it was time to take my health seriously.
2010 also saw the culmination of multiple bad financial decisions and living beyond my means in the foreclosure on my house and a bankruptcy. Despite finally landing a great job in 2008 it was too late to stop the inevitable and my family dragged ourselves to our new home, a small 3 bedroom apt where the rent was as much as our previous mortgage and we were actually tripping over each other. The lessons were many. I learned to curb my spending. I learned to downsize. And as we banged around in close quarters I learned that the smaller the space, the closer the family and as a family we achieved some much needed closeness.
In 2011 a co-worker and friend offered to give me a kidney. Her selfless offer caused a chain reaction at my company culminating in a fundraiser for my medical expenses. I felt like the luckiest man alive and I was blessed with a huge support system. I received my transplant in December. I was grateful and empowered. The lessons were many. I learned that a blessing can come from any source and to be open to it and be grateful. I learned that people are good and plentiful. I also learned that there is a catch to everything. My GM, who coordinated the fundraiser for me was going to play that card to manipulate and attempt to compromise me for years to come.
In 2013 I lost my father to Parkinson’s. It hit me hard to say the least. I still wonder if he died knowing how much I appreciated and loved him. The lesson, and there are many, was to tell the people in my life how I feel about them. I have committed to always leave people as if I am never going to see them again. Regrets are not part of my current game plan.
2013 also was the year I joined the wonderful fraternity of Freemasonry. I found a passion to pay forward my recent gift of a Kidney Transplant and Freemasonry allowed me access to great men who do great deeds. My commitment to be a better man each day than I was before has forever changed my life. The lessons are many. Selflessness, charity without expectation of recognition, love of community and the confirmation that there are a lot of good people in the world, you just have to know where to look.
Professionally, it was a wonderful decade. In 2008 I had fallen into the job that would not only introduce me to a lifesaving donor, but I found my niche in my career. The company groomed me for a couple of years and then gave me a department to build and I can say, without hubris that I knocked it out of the park. My background and personality served me well in our business model and I became a crucial “go-to” team player valued by our customer base and a frequent resource and problem-solver. Every day was challenging and different and I found myself in a position to help people. The lessons were many, chief among them was to listen to those around you and help them whenever possible. Also, be the worker and coworker that when you take a sick day, people miss you.
I would say that 2016 was the worst year of the decade. It began when my kidney failed suddenly in February. I was floored. Upon receiving my transplant I was a new man. I began my recovery immediately and I committed myself to keeping the kidney for at least the 15 years I was told it would last. I worked out hard. I did P90X, I biked and hiked. I took care of myself and dropped weight. When it suddenly failed after only five years, I was angry like never before. Where were my 15 years? Why did I have to find out on my own that my disease was the only kidney disease to return and infect the new organ? I would later deduce the lesson. You never know what the future holds so get out there and live now. If the Dr.’s had told me that I may lose it in 5 years would I have achieved all that I had? No, if I had sat around waiting for the shoe to drop I would never have climbed those mountains and savored the view.
In 2017 the bottom really fell out. My company closed, taking my dream job with it. My health deteriorated to the point that I couldn’t keep another job. When the job was gone so was the money and that was when my marriage officially collapsed. It was inevitable, we had been strangers for years but it hurt nonetheless. I suppose you know the rest. I moved in with my mother. I applied for Social Security Disability. I was denied. I went on dialysis and I am to this day. That’s the bad.
But here’s the good. I started this blog and if you are reading right now then I made a good decision. I also focused on creating and maintaining solid relationships with my children. Today, we are strong and their love sustains me. I also committed to getting along with my ex. I have not to this day experienced the closure, the explanation for the rejection many years ago and the giant wall that formed between us but I remained friendly with her for the children, for us and for the sake of tranquility. I would like to think that I am setting a good example for the kids on how to be an adult.
2019 served as a year of tying things together and trying to formulate a plan going forward. It was a year of many setbacks and achievements. After nearly dying in September 2018 I emerged from a medically induced coma with a “bucket list” mentality. I focused more on what I could do and less on what I couldn’t and in the process found that I could do a lot of things my detractors said I couldn’t. One of them was buying a motorcycle. Everyone said no, as had my wife and family for many years. But it was in my blood and as an homage to my father I was on two wheels again. The freedom and love of the open road has changed my life and, second to my children, is a thing that keeps me going on those dark sleepless nights when the pain is so bad that I consider the darkest of thoughts…ending it.
My greatest achievements of the 2019 was the transformation of my entire attitude. I like who I am. Finally.
It is true that a man has to hit rock bottom, with nowhere to look and go but up, before he truly discovers what is truly important. Brutal self-examination led to self-improvement. Physical challenges awakened the fighter in me. Having nothing to lose empowered me to rise from the ashes and shine my light instead of lurking in the shadows. It was then the lessons became clear.
For every high there is a low. People do not suck. Life is to be lived not viewed out a window from a recliner. The words “no” and “can’t” are to be treated as a personal challenge. Sometimes we all need help and that’s when we discover who our friends are. Pain is temporary while regret is forever. Be charitable to a flaw with your time if not your wallet. Only look down on a man if you are helping him up. Be nice. If you can’t do that then be quiet. Don’t ever let someone tell you what you can’t do. Make every day count as if it were your last.
In closing, I hope to be around long enough to do another one of these ten years from now.
I heard a radio host yesterday asking people to call in and define 2019 in one word. “Tumultous”and”chaotic” were used frequently. Myself, I choose “disappointing”. I am disappointed in our lack of respect for human life as first responders are targeted for death, people are beaten and killed over the color of their skin and innocents are being slaughtered over failed political and religious ideology. I am disappointed in the pursuit of money, power and belongings at the sake of character, integrity and morality. I am disappointed in our fascination with celebrity without merit, gossip without respect for boundaries and the idea that bad behavior is acceptable if it accomplishes your selfish agenda. On a personal note, I am disappointed in myself for losing the optimism I once had so much of, that I let life get to me this year instead of customarily plowing through the pile of horseshit looking for that pony that must be in there somewhere. I hope that next year is better, if nothing else that people stop being ugly to each other and we start treating each other as brothers and friends we have yet to make. And I hope that I get back my power to create my situation instead of being defined by it. And I hope that anyone who suffered through this post has a great 2020.