Bad things to great people

I woke this morning to an absolutely beautiful, cloudless day. Spring and Summer have largely evaded the Northeast so far this year so I deduced that I really had no choice but to take the iron steed to my Nephrology appointment. I saddled up for the 50 mile ride south.

As my window had suggested, it was nothing short of a glorious hour ride and I’m pretty sure I smiled the whole way. I made excellent time so I rode around a bit before I pulled into the Medical building the suggested ten minutes early. I parked Bella, wiped the dust and pollen off of her and went inside.

After I checked in I went to sit in the waiting room. Seeing the helmet, several people struck up conversation with me about riding, the weather, etc. I’m still amazed at what a conversation starter a helmet is. After several minutes of small talk, I was called in.

My doctor, who handles most of my needs including monitoring my progress on dialysis, glanced at the helmet, surveyed my jeans, boots, tanned arms and face and said “Well, I guess I don’t have to ask how you’re feeling, do I?”

“I could lie to you, Doc but I feel great.”

After a thorough 30 minute evaluation he concluded that indeed, I was feeling great. He ordered some routine tests and sent his Nurse in to do some follow-up exams. Her name was Madison.

Madison was very good at talking to patients and we immediately began talking as she breezed through her routine. It didn’t take long for her to start talking about her fiancé, and how he was critically injured at work. He is a tow driver and he was hit by a car. I suggested that maybe it was the opening for him to maybe get a better, safer job someday. That’s what I do, put a posi spin on things. She agreed. Then she said something that really resonated with me,
“It seems bad things happen to the best people. As a nurse I see it every day.”
“Can I expound on that?” I asked.
“Sure.”
“It’s been my experience that the illnesses and accidents create the best people.”‘
She was visibly intriguedby what I said. I kept it as brief as I could as I told her what Chronic Illness and my experiences in the blogosphere with the many Chronically ill bloggers that I loyally follow and interact with have shown me. That illness and injury bring out the best of us. I have stopped short of calling it a blessing, but it is undeniable that when faced with unpleasantness and uncertainty many people develop a true appreciation and zest for life that “healthy” people may never achieve. We love more, fight less, forgive more easily, breathe more deeply and waste fewer moments because we don’t have the luxury of guaranteed longevity.

Madison is young, I would guess no older than 23. She was enthralled by my thoughts but I suspect she is taking my word for it to a large degree. She is too young to have seen a lot of the ugly in the world. But I know that I gave her something to think about. She is a good nurse and I’m sure she is decent and kind to all of her patients. But I hope that she will learn to treat her more hardscrabble patients not with pity or sympathy, but instead as the warriors that they are.

Every day is a beautiful day if you take the time to find the beauty. It beats waiting for a better day that you may not be around to see.

Living

I have gone on record as being divided on how I feel about Social Media, Facebook in particular. I hate the politics and the pursuant hatred and vitriol from idiots with “keyboard balls”. I hate the vague statuses in which some attention hound posts “ooh I’m so mad!” so all of her friends will reply “What’s the matter honey?”. Then there’s the 50 year old housewives doing duckface selfies. Enough already.

The one thing I have always liked about FB is catching/keeping up with old friends. I have deeply enjoyed this aspect of it. Having graduated HS almost 36 years ago I love that I can see what people who I don’t actually see often (or at all) are up to. One such person is Tim. The last time I saw Tim was after we had a fistfight after school in 9th grade. I don’t know to this day why we fought, but it was over quick and he moved soon after. That was 38 years ago. He and I connected on FB about 8 years ago and have been very friendly but never gotten together.

That changed this week. I posted a pic of my new (to me) motorcycle

and several minutes later a IM popped up. Want to ride?
Hell yea, I replied. We worked out the details for Monday, the weather was looking fine.

We met at a restaurant we both knew. He had come from 50 miles south of me and the plan was to ride into the White Mountains of NH where, I think it is safe to say that God himself designed these roads for Motorcycles and merely allows cars to use them as needed.

He pulled in right on time. I knew what his bike looked like and a fair idea what he did as well. He got off his bike, took off his helmet, lit up his trademark cigarette and just said, “Billy Mac. You haven’t changed a bit.”
“Well, gee Tim. I would think I’ve changed a little since 9th grade.”
We talked for a bit, mostly small talk and we then saddled up. I told him I was a bit of a Rook so I would follow him.
Off we went.
There are certain rules to follow when riding in a group, even if the group is two. I learned them from my dad. Don’t ride side by side, ride staggered. If the leader is occupying the left side of the lane, stay in the right so that another driver doesn’t try to occupy the lane. Don’t get too close. I was nervous at first but I did fine. At the first stop, Tim likes to stop frequently and have a smoke and talk, he asked how long I had been riding.
“Less than a month.”
“Wow”, he said. “You’re doing great.”

At the next stop I asked where we were going. He told me we were going up Cathedral Ledge. I asked more questions and he said to just follow him. Before long we were taking a left into Cathedral Ledge State Park. We then began an upward climb on the windiest road I ever saw. Cars were crawling up and we had to pass a couple because if we didn’t we would have rolled back down the hill. It was that steep. We reached the top and there were hundreds of bikes and cars. We dismounted and I followed Tim to a clearing. Where I saw this…

The view was breathtaking. We talked for a while, got into a little more detail about our lives, elaborated on things we knew about each other from Facebook posts. Finally, he said. “Dialysis, huh?”
“Yup. If you look over there (I pointed to a clearing not visible in this pic), that’s my clinic right there.”
“They’re there. And you’re here, huh?”
“Absolutely. When I’m not there I’m living.”
Tim’s a quiet guy, a man of few words. “You sure as hell don’t look like a dialysis patient to me. Not that I actually know what one looks like, but it ain’t this.”
“Thanks, man. That’s the point.”

We left, descended the hair-raising winding road and set out on the last leg of our journey. We ended up on a very winding stretch of 29 miles that begins with a sign “no gas or services next 29 miles.” The first 3.5 miles were straight up. Then the curves began. I followed Tim’s lead and we began a stretch of snake curves where you need to lean your whole body into the curve or you wouldn’t make it. It was do or die time for me. I summoned my courage and went at it.

Part of me wanted to slow down but I didn’t. I rolled with every turn, mimicking every move Tim made. The wind blew us about, the noise in my helmet was deafening, the adrenaline was pumping. I was exhilarated in the place of fright. At one point I screamed over the din of the engine to no one in particular
LIVING!”

No mortal man heard me, it was for the ears of God alone.

At the next break we talked about the rush of that section of road. I was in heaven. I felt accomplished, I felt like I had performed above my pay grade. I felt alive.

Tim and I later parted ways with a commitment to do it again. We will. I can’t wait. It’s days like yesterday that remind me why you have to deal with the bad stuff to get to the good stuff. The bike, good friends, good conversation, the outdoors on a beautiful Spring day, adrenaline. That’s the good stuff.

I may be stuck in a dialysis chair 3 days a week. But on the other 4, you’ll find me out doing something that someone told me I can’t or shouldn’t do.

I call it LIVING.

What an ass

How was your yesterday? I bet it was more fun than mine. I did a dialysis treatment and a Colon Blow on the same day.

I have spent most of the week dreading my Colonoscopy. It is a necessary evil because A)I’ve never had one and I’m about 3 years past the normal age to get one. B) It is the last test to complete to be approved for another Transplant.

Knowing that I needed it and that it is a necessary step wasn’t the issue, I was just dreading the prep.

Yesterday I woke knowing that this was the day that I had to start preparing. I had my jug of ready-mix diarrhea powder on the counter, just add water, and I had my instructions laid out on the table. I was going to be behind the 8 ball because I was supposed to begin chugging water first thing in the morning but that was a problem because I had dialysis until 4, and the last thing you can do is go to dialysis full of water. You’re heavy and you have to pee, both no-no’s.

My plan was to have water with me for the ride home. So as soon as I left the clinic I managed to slam down 2 water bottles on the way home. Then when I got home I mixed the “Ready-Blech” and chugged a 8 oz glass every ten minutes until I had consumed 3/4 of a gallon. Then the fun began.

All in all it wasn’t so bad, I was relatively dry because I have semi-fasted all week. I was disappointed that I didn’t see the GI Joe that I swallowed when I was 12 but all in all I got through it. I actually slept through the night. Which was a good thing because I had to get up at 5 to drink another quart of Ready-Blech.

I needed a ride home after so Mom joined me. It was an hour drive to the hospital and it was miserable. In hindsight (hind? no pun intended) I should have brought a cork to sit on. The morning dose was wreaking havoc on me and I nearly ran into the hospital in search of a bathroom when we got there.

Once that episode was over, I was immediately ushered into the staging area to undress, put on a very flattering assless “Johnny” and get my vitals and instructions. The nurses, male and female were very friendly and informative and managed to make a couple of Colonoscopy jokes. I cried foul.
“Here I am behaving, and believe me I got jokes, and you’re doing it.? I’m being good because you have probably heard them all.”
It’s true, you know. Everyone thinks they’re the first one to make the Dad jokes, like when meeting a Funeral Director and saying “how’s business…dead?”
Ba doom doom crash.
Their answer was that, occasionally they hear a new one. I laughed inside, I had yet to spring mine on them.

As I was in the process of succumbing to the anasthesia, they rolled me over onto my side. It was then that they noticed the “post it” note I had stuck to my ass that read…

Exit Only

When I came to in the recovery room I was greeted by a slew of nurses and technicians congratulating me on “the one they’ve never heard before.”

All joking aside, they removed a couple of polyps and I’m fine. Still an asshole, but fine.

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.