Service

In my last post I discussed the virtue of humility. It was a simple post, a suggestion to mankind in general and a reminder to myself in particular to think of self less and others, or the big picture in general, a little more. In the interest of brevity I touched on, but was unable to dedicate enough time to the greatest benefit of the humble lifestyle. Service to others.

When you are ill, even if you are fortunate enough to have a strong circle of support in the form of family and friends, you often become the focus of extra, sometimes unwanted attention. As well-intentioned as the constant inquiries into your health status can be, it can have a negative effect. I have the occasional day that I feel “normal” (an entirely different subject for another day) and am going about my day and the first person I encounter hits me with a “how are you feeling?” and boom, there it is, the reminder that they know me as the sick guy. It feels weird, perhaps ungrateful even, to put this to words because it is a beautiful thing that people are concerned about me enough to ask.

But it still bothers me.

So I deflect. I play it down. Knowing that at least half of the people who ask really don’t want to know, but feel negligent by not asking, I keep it short. Often, I just say “today is a good day.”
I can’t go wrong with that because I do have more good days than bad, and I truly believe that any day looking down at the dirt, not up, is a good day.

The other thing I do is spend as much available resources on others. I work my Masonic charities. It is the greatest kind of giving, it is anonymous. Scrambling behind the scenes to find a prom dress for a HS senior who can’t afford one, glasses for a child whose family has no insurance, a scholarship for a local youth to buy books is truly food for the soul and I am grateful to be in a position to help.

I volunteer at the local food pantry. One day there and it is immediately evident that my life could definitely be worse. All of our lives could.

On a smaller but significant note, I make a point to call and visit people. People I know very well and people that I know enough to call and say hi. The funny thing is that everyone that I call or visit gives me some inclination that they needed it, confirming my favorite quote…

I have spoken to so many people that needed to unburden themselves and I found myself in a position to do something, even if all they needed was for someone to listen to them. One commonality I have found is that the conversation is either prefaced by or includes the some variation of the phrase “of course, this is nothing compared to what you’re going through…”

I shrug that off. That is the essence of what they don’t get. My problems are my problems, their problems are theirs. It is not a matter of whose is bigger or worse, they are pressing on us and affect our ability to function and be happy. It’s not a contest. But interaction with each other, no matter how small, makes it better and also unburdens us. I truly believe this.

Obviously, at least it should be, we should be cognizant of the needs of our fellow man and help whenever possible. It is our duty as human beings. But a wonderful secondary effect of focusing on others is that it takes your mind off of your own issues, whatever they are.

I can’t speak for everyone, but I do know that should scientists discover the center of the universe, I won’t be shocked to find that it’s not me. My happiness is in making my life not only about me, but of being a part of a bigger picture. Being surrounded by happy is my source of happiness. My sense of purpose. I couldn’t achieve that if I was to sit around thinking about how sick I am.

The universe, like most people, doesn’t give a shit.

Don’t let him win

A team of doctors frantically work to save the life of the patient on the table. One of the doctors yells “Don’t let the bastard win!”
Later, an observer to the scene leaned in to a doctor and asked “What did he mean, ‘Don’t let the bastard win?’ Who was he talking about?”
The doctor calmly replied, “Death. The bastard is Death.”

This was a scene from MASH, one of my all time favorite shows. The doctor was none other than “Hawkeye” Pierce. The part of Death was played by, well, Death of course. A character that transcends a TV show, it is a very real thing.

And it is a Bastard.

I remember the first time I saw that episode, it resonated deeply with me. I caught it on re-runs the other night and it knocked me out of my chair. It spoke to me.

I have been a obstinate, stubborn, insanely driven lover of a good fight my entire life. The best way to get me to do something, my father always joked, was to tell me that I couldn’t do it. Through the years I became known for it, and as my health deteriorated, it became my calling card. When I met a challenge, I overcame it. I found that it inspired people, and that was a role that I could live with.

Now, I don’t have a lot of challenges or enemies. Not much is staring me in the face. With the possible exception of my mortality. It’s taunting me, telling me to lie down and accept its inevitability. To just go with it. After all, it says teasingly, it’s only a matter of time after all.

Fuck you, you bastard. I’m not listening.

I see people every day that have given up. They are just going through the motions, waiting for death. Not me, man. I’m scouring for donors, I’m exercising, I’m being positive because it’s only one of the two choices I have.

So many days I have felt tired and weak. So many days I have sat on the sofa unable to do anything. So many nights I have laid in my bed, sleepless and exhausted counting reasons to go on vs giving up. The term “quality of life” bounces around in your head during those moments. When you don’t feel well, life can not feel like it’s worth living. You can even begin to welcome the sweet release of death.

I’ve been close to death 3 times in my life. I’m not scared of it. I’m also not ready for it. I have a lot of people in my corner who want me around. So it’s up to me to get myself in a place in which I want to be around.

Today, I started week 3 of my workout routine. Treadmill, kettlebells, pushups and resistance bands. My strength is pathetic, my stamina is woeful and my body begs me to stop. I pushed through and now I feel like I have accomplished something. I did more than I was able to on week 1. That is forward progress.

If death is coming for me, he needs to know that it won’t be without a fight. I’m not letting the bastard win.

The new normal



Chair one is empty today.

An empty chair is the car wreck of the room. You don’t want to look at it but as you pass by, you have to. Sick? Vacation? Or did they…get that out of your head, don’t think the worse.

Chair 3 is in the private room, a walled oasis in a open desert. I’ve never been in chair 3, I’m too well-behaved. The “problem” patients seem to go in there, the ones that hassle the nurses and complain a lot. Dan the Veteran is usually in there, he hassles the staff like an old man at the early bird special. I like Dan, mostly I respect him for his military service. You know, the service that gave him the need for a heart and a kidney transplant and then denied him his VA benefits. The last time I saw Dan I asked him how we was, and he told me. After 5 minutes of him complaining, I not-so-politely reminded him that we are all at the clinic for the same reasons, maybe he could try to be a little more pleasant? It’s not that he’s not sick or that I don’t empathize, but he’s preaching to the choir. Did I hurt his feelings?
He’s not here today, and I feel bad.

Chair 4 is also empty, it is usually reserved for a new patient, a transient or someone who missed a session due to illness or weather.

Chair 5 is today’s home for Terry. I don’t know much about Terry. He’s a quiet guy, in his 60’s. He nods his hello’s and goodbyes. His knit Harley-Davidson hat and multiple tattoos suggest that he was a pretty fun guy before he got sick. He seems simple and direct, I earned his respect the first day he made his way by with his walker, when I moved my protruding feet to make room. His nod of thank you told me all I needed to know.

Chair 6 is today’s home for Kim. Kim plays with her phone and sleeps. She doesn’t say much, but she monitors the banter of the room and will occasionally smile warmly. Kim doesn’t have teeth, I think that’s why she doesn’t say much or smile often. She clearly doesn’t feel well, even after dialysis. She walks the same painful, slow walk on the way out as she does on the way in.

Chair 7 is today’s home for Jack. Jack sits upright, vomit bag in lap because of his chronic nausea, staring straight ahead through dark glasses the entire session. He says little and smiles less. It took me a while to realize that he is legally blind because he walks out unattended. He’s a big dude, I wouldn’t want to have messed with him in his prime. I wonder how he is handling his new life.

Chair 8 is empty. Lisa has been missing a lot of appointments. She has not been a patient for long. She is not handling it well, she has experienced almost every complication one of us can. I hope she starts tolerating it soon. She’s quiet, I really don’t know anything about her.

Chair 9 is today’s home for Kurt. I don’t know for how long, but he’s been doing this a long time. A small man with a great head of hair, he makes his way in with his walker and oxygen tank, armed with enough gear to survive an ice age. He always says hi to me, occasionally we sit next to each other and talk, between his frequent naps. He used to be a big man in business, now he lives for his next treatment. I like Kurt.

Chair 10 is home to John. At 81, he is a vibrant guy. Witty, always smiling and messing with the Nurses. He passes the session with a stack of newspapers in his lap, occasionally glancing at the TV. He is quick with a smile and a joke. Not eligible for a transplant, he is fine with his routine for now.

Me, I’m in chair 2. I’m uncomfortable. I’m itchy. My arm hurts from the needles. I don’t much care for this spot, the glare from the window makes it hard to see the TV. The Nurses station partially blocks my view of the room, which dampers my people watching. I read and I watch mind-numbing TV, I try to blog. I talk to the nurses to pass the time. The nurses love me. I never rush or hassle them. I am never rude. I don’t complain. They wish the others were more like me. They hate that I have to be there, but they are glad that I am.

When I’m not wondering what is going through the minds of the others in the room, I evaluate how I’m doing. The doctor’s tell me that I’m doing great. That’s the physical part. I know that. I focus on how I’m handling dialysis emotionally. I think I’m ok. I try to be active on days I feel well. I try not to be discouraged on days that I don’t. I’m getting used to it.

It’s all about the routine, after all.

Arrive and wait in the waiting room to be called in.
Make small talk with the others.
Get called in.
Report to the scale to weigh in.
Any nausea, vomiting, dizziness, change of appetite? Me, I always say no.
Go to your assigned seats and do a standing Blood Pressure.
Sit and wait for the 2 sticks from the one-inch needles that would make Dracula himself wince.
Wait for the pain to subside as the Nurse programs the machine.
We make small talk until it is time to settle in, our feet up, laptops or tablets at the ready, our headphones plugged in.
We try to nap, try to read, try to watch boring daytime TV, anything to kill 4 excruciating hours of sitting perfectly still.
When the welcome sound of the end timer goes off, the blankets come off, the needles come out, we apply pressure to the needle sight to stop the bleeding and we wait for the dizziness to subside.
We then dutifully wait our turn at the scale and announce our new weight, which is hopefully significantly lower now, and trudge out the door.
We’ll be back in a day in a half.

This is my new life, my new normal. I can live with it for now. I really don’t have a choice. Planning, scheduling, hoping to make the most of the good days. I hope to be on a transplant list soon and be in recovery by Summer.

In the interim I will continue to be the guy the Nurses look forward to seeing. The guy that other patients laugh with (or at). The guy that has become part of a community, one that has altered his outlook on what really matters in life in a wonderful, if not a routine way.

A Daughter’s love

I received a text from my youngest daughter late last night. We text almost every day and I always light up when I see that it’s her.

She told me that she has an English assignment to write a 20 sentence essay about a powerful moment in her life, and would I mind if she wrote about my last hospitalization. I joked with her, which one? It was a caustic joke, making reference to the many crises I’ve been through in the last couple of years. It wasn’t funny of course, my battles have had a real impact on my kids, one that I wish they never had to deal with. The last one, I’ve heard, was particularly bad. I have to rely on what I’ve heard because I was unconscious for 2 days.

I told her I was fine with it and asked her to email it to me. Here is what I opened.

As I pulled up to the hospital, I did not know what to expect when I walked into his room. My mom and I made it into the hospital, to the elevator, and into the ICU. The nurse led us into the room and my heart dropped to my stomach as I saw my dad. I have never seen someone look so helpless, while he laid there with a tube down his throat and a machine breathing for him. The nurse was talking, but I couldn’t listen. All I could hear was my heart pounding, the machines beeping, and the sound of oxygen being shot into his lungs. The first time I saw his chest rise then fall, tears came to my eyes, but they did not stop. Tears kept pooling in my eyes and falling down my face. I could not breathe. I felt like I needed to have oxygen sent to my lungs, too, because I couldn’t seem to breathe on my own. They told me to talk to him, but what do I say? Would he be able to hear me? All I could do was hold his hand and hope he could hold mine back, but he didn’t. Even if he wanted to, he had gloves on preventing him from ripping the tubes from his mouth, which he had tried to do during the many attempts to wake him up. So I did the best I could and I held his hand and spoke soothing words to him. I told him I loved him. I told him he couldn’t leave me, and he didn’t. He stayed strong for me, for my family, and for himself, like the fighter I know and love. “He’ll be okay,” they told me. He’ll be okay.

She will be reading that in front of her class.

I was floored. I cried. I was so sad for her that she had to go through that, so proud of her ability to express herself so boldly and honestly, and so taken back by her account. Above all, I was blown away by the love this child has for me.

I told her how proud I was, how well-written it was and that I was moved by her words.
“Well, it’s all true”, she matter of factly replied.

I continue to struggle with that episode of my life. I’ve had a couple of medical close calls in my life and I sincerely remember traveling towards a tunnel of some sort before being revived. I know what I experienced and no skeptic will ever talk me out of it. But the last one was the worst. I was inches from the dirt farm, to the point where the Doctors were discussing my DNR.

Through Doctor and family accounts, I’ve been given details of the ordeal. The 2 ambulance rides, the first to a hospital that was ill-equipped to treat me. The 104.9 fever. The medically induced coma. The breathing tube and the bedside dialysis. I don’t remember any of it of course, and there lies the frustration.

The one thing I have never wrapped my head around is what my family went through during that time. The guy who always tried to act strong, through a carefully orchestrated design of denial and lying about my health was, in my daughter’s words, helpless. Helpless is not a word often associated with me.

My mother, my ex-wife (who was amazingly supportive and present throughout the ordeal), and my older children were all deeply concerned. But my youngest, she was beyond herself. We have a special bond.

As all of these thoughts ran through my sleepless mind last night, I texted her:
“That was a scary time.”

“I was more scared that I wouldn’t be able to say goodbye.”

Is there anything that would make a guy want to keep plugging on stronger than that? God, I love that kid.






the longer it is, the harder it gets

Now that I’ve drawn you in with a sexually provocative and misleading title, here we go.

I’ve heard it said that Blogging is like riding a bike. You never forget how and it’s easy to get right back in the saddle. I don’t agree. I think it’s more like working out. When you are really into fitness you feel strong, vibrant and you crave more of that feeling. But once you stop, or take a break, the longer you are out of it the harder it is to go back. You know that you have lost strength. You know that it will take more effort to get back, if ever, to where you were. It is going to hurt. You fear you will never get that high again.

This is where I am now with my blog.

18 months ago I started this blog. I had no readership at first but I poured my heart and soul into it and I told my story. The readers eventually followed and I began to feel a “writer’s high” in which I was getting gratification through feedback and stimulating dialogue, I even had a follower write a blog post citing mine as the “best blog she had ever read”. I was thrilled and honored by that.

Now, I fear that most of my stories have been told. The ones that I do tell do not seem to get much readership. Most of my loyal, regular readers are gone. They have either stopped blogging or just stopped reading me. Being fond of feedback and comments, I mostly get some “likes” with no real indication that my post was actually read.

Then there is my health. I have been on dialysis for 5 months and overall it has been a positive experience. I do feel better in some ways. But the fatigue, the washout and other unpleasant side effects such as insomnia are taking a toll. I am up all night many nights a week and forced to sleep late, which I hate. And when I am awake I just don’t have the energy or mental clarity to be creative. I limp through most days.

The longer I am away from it, the harder it is to get back into it. Like exercise.

But here I am, pondering a change in format. Reviewing insights. Evaluating my tags and categories. Trying to find answers to explain why my blog isn’t giving off the spark, to my readers and to myself, that it used to.

And here is what I came up with. I still have a story to tell. If not for you, then for me. Read it, don’t read it, I can’t control that.

I do it for me and hope that someone enjoys the ride with me.

7 years

 Seven years ago today at this time I awoke from Anesthesia in a tented room. The first thing I noticed was the plethora of wires and tubes sticking out of my neck and arm. A doctor soon entered the room, followed by a team of nurses. They took my vitals and the doctor then asked me a few questions to test my mental acuity

“Sir, do you know what day it is?”
“Tuesday I think, unless I slept longer than I think” I replied foggily.
“Correct. When did you work last?”
“Yesterday.”

“And your last dialysis treatment?”
“Never did it.”

“Sir, we have a number that we use to determine how due someone is for Dialysis. 10 is average. Do you know what yours was?”
I nodded my head. His snarky attitude was pissing me off.
“110. You made it, but you were foolish and took a big risk.” He then walked out of the room condescendingly shaking his head.

Of course I avoided Dialysis. I would have lost my job. Then I would have lost my house and my family. I fought it with everything in my being for the longest time. And it worked, my Angel eventually came along and I got the gift of a new Kidney. It was an amazing gesture from a remarkably down to earth, humble young woman.

She was a co-worker. The daughter of my Assistant. I knew her pretty well but not well enough to think that she would do such an amazing thing.But it turns out that it is just the way she was.

I was hospitalized one day with a kidney-related infection, My boss came to visit me. He dropped it on me that Deb was willing to be tested. I was floored. When I returned to work the next week I first gave her a giant hug and then carefully explained to her the process.I thought for sure she would flinch. She didn’t.

Within a month her testing was done. She was a perfect match. It was scheduled soon after for Dec 13th.

Word soon got out among our customer base about the situation. It was big news. A local CBS affiliate came to our office to interview us. We were on the 6 O’clock news. The interview was priceless. When Deb was asked on film why she was doing this she curtly replied “I have 2,he needs one. I don’t want him to be on dialysis and lose his job so here we are. Short and sweet. For weeks after wherever I went people came up to me and said, “Hey, you’re that transplant guy I saw on the news!”

December 13 th arrived and we met at Tufts Hospital at 6 AM. My mother and father took me in, Deb was already there with hers. Our families had never met, so they exchanged pleasantries. We were all nervous but I was the only one to show it. At 6:30 the doctors called for us. I gave Deb a hug and told her that I would see her on the other side.

As you know I made it to the other side. I had a quick recovery, 33 days from surgery to return to work. Beyond my physical recovery I was tasked with reconciling with the overwhelming gratitude I felt towards Deb.

We became great friends. We made jokes. People at work were afraid to mess with either of us for fear of retribution from the other. She was tough, her famous joke was “Take care of that kidney or I’lltake it back.”
I believed her.

It’s somewhat painful to reminisce on this, given that her gift has failed and I am back to square one. I had the hardest time telling her because I was so torn that her gift hadn’t lasted longer. As if I hadn’t done my best to make it last. When I did tell her, she didn’t flinch but instead said “I hope it gave you what you were looking for, no matter how long it lasted.” A more grounded person have I never met.

Despite the physical viability being gone, her gift changed me profoundly in so many ways. Beyond giving me a new lease on life, it also transformed my attitude towards everything. It helped me to exemplify the traits that I had always wanted to dominate my life…gratitude, empathy, charity and humility. I was given the ultimate gift, that of life. I owe such a debt to Deb, her selflessness and generosity will never be forgotten.

I may have been wrong to dread Dialysis as much as I did. It’s no fun but it’s not nearly as bad as I thought. And it beats the alternative. The gifted kidney may have failed but the lessons of the transplant remain intact and healthy. I am still grateful. I am stillhumble. I am still appreciative of all that I have. If attitude were currency I’d be a truly wealthy man.


Don’t let people tell you that people suck. There are some wonderful people in the world. I know because I am surrounded by them.

If you don’t know one… be one.

Happy Bird-Day

My family always had a bit of fun with me at the Thanksgiving table when it came my turn to say what I was thankful for. Maybe I waxed a bit too poetic about deployed soldiers, the homeless and the lonely. I just felt it needed to be said. Eye rolls and sarcastic cracks aside, I still do.
Recent events in my life, while debilitating in some aspects, have had a profound impact on my ability to be grateful. It is almost a superpower. I have so much for a guy with so little. The best part is that it lasts all year, not just the holiday season.
If you live with the knowledge that no matter your situation, someone always has it worse you will achieve a generous spirit that will survive more than one Thursday a year.
This time of year there is an abundance of people who show up at pantries and shelters to volunteer. Sometimes people are even turned away because too many show up. But in August they are begging for volunteers. The need doesn’t go away when the trees are taken down, neither should the spirit. Giving doesn’t have to be a grandiose gesture. A simple smile and a good word may be all someone needs to have their faith in humanity restored or energized.
No-one can do everything, but everyone can do something.
I am grateful for my family and my friends. I am thankful for all kindness and generosity, regardless of the scale. My goal is to spread that mentality like a bee spreads pollen.
Happy Thanksgiving to all. If you have a little extra spirit, I’m sure someone would love a slice.
Every day can be Thanksgiving with the right outlook.