A year has passed…conclusion

October 4, 2018
I woke up to a team of Doctors standing at the foot of my bed. It was early. or at least it seemed like it was. I hadn’t slept much the night before. The head doctor began listening to my lungs, feeling my legs, being a general nuisance as the rest of the white smocks scribbled frantically on their notepads.
“You won’t remember me, sir but I’m the doctor that was on duty the night you came in.” He was looking me dead in the eye. “I’m having a hard time believing that I’m looking at you right now. You were that close.”
“That’s what I keep hearing.”I said. “I must have been in bad shape.”
“Bad shape doesn’t begin to cover it. You were on the edge of death. How do you feel now?”
“Grateful.”
“You’ve been given a second chance . Take advantage of it. You may be going home in a couple of days if you feel up to it. You need to walk for me before I sign your release.”

I rolled out of bed, with difficulty of course, struggled to my feet and began to slowly walk out the door. The team followed me out and watched as I walked to the nurses station and back. I was wobbly but I did it.
The doctor asked me when I had mastered that, to his knowledge I had failed the day before.
“Last night while everyone was sleeping.” It was then that I noticed Olivia had joined the group.
“Bill is a determined one” Olivia offered. I smiled at her. The team left my room.
“I want to go home.” I told her.
“A couple more days I think. Your fever is still erratic.”
“I can’t take being in bed anymore.”
Her concession was to sit me up in a chair where I spent almost the entire next two days. I continued to try to put the pieces together.

It was my ex wife that filled in the holes for me. She painted a vivid picture for me of what it was like to see me like that. She had visited me every day, I was impressed. At one point or another all of the kids had come to visit me. Unfortunately they all came when I was sedated. The sight of me with a breathing tube, unconscious was a bit much for my youngest daughter. My oldest son, who was on his way to visit his girl friend, was told to turn around. He asked why he couldn’t come in the morning. He was told “Because your father might not make the night.” Of course he rushed there.

October 6, 2018
I was released in the morning. Mom came to pick me up. When I got home I sat on the deck, enjoying some natural sunlight for the first time in 11 days, and opened my mail. The first letter I opened was from Medicare. My health Insurance had been cancelled. Effective that day. Turns out my SSDI had gotten approved and I was now fucking rich and wasn’t eligible for state assistance anymore. I tore it up and went inside.

I had just fallen asleep in my recliner only to be woken by my mother’s best friend Arlene.
“I didn’t think I would ever see you again, Billy. Welcome home you tough bastard.”
“Was I really that bad?!” I asked. It seemed I was asking that to a lot of people. Her face said it all.
Many more townsfolk would say that very thing to me in the ensuing days. They all thought I was going to die.

There are lot of takeaways from this whole incident. I was grateful and impressed with the Hospital. I was thankful for the support of family and friends. I awoke one morning in the dialysis room only to find one of my 3AM buddies Jeff next to me patiently waiting for me to wake up. He had been there for 45 minutes watching me sleep. Now that’s a friend. Later that night two more great friends and their wives visited me. They sat for hours with me, they walked the halls with me, supporting my weight when I wavered. Of course I’m haunted by the way they were looking at me. The words “Dead Man Walking” came to mind. They were scared and it was disconcerting. But overall I am moved and eternally grateful to them for the visit. It really meant the world to me.

Another takeaway is that I am proud to have been gifted with toughness and a survival instinct. In order to survive, one must have a reason. I must have had plenty of reasons to defy the odds, as I was told so many times that I did just that.

I’m a fighter. I’m stubborn and I never quit. This incident is just more evidence that it wasn’t my time. I’m not ready for a dirt nap. My life is compromised but it is not over. I have weddings to go to and Daughters to give away. I have grandchildren to meet and motorcycle rides with my boys. I believe that in my lifetime there may be a cure down the road for me. I want to be there if it does.

My last takeaway? Even if I wasn’t awake, my ability to fight death is there and it is stron. Even unconscious, I do not fear dying.

I fear not living. And that is a powerful thing.

I’m also grateful to be here to tell this story, and that is also a powerful thing.

“Playing the card”

It is truly a great thing to meet a blogger that you become actual friends with outside of the blogosphere and its routine of merely reading, liking and commenting on posts. I have such a friendship and we had breakfast Sunday morning.

Much of the conversation revolved around our health. She is a recent Cancer patient, note that I did not say “Survivor” and she is well versed on my situation so it was to be expected that our health challenges would be a part of the conversation. After a hell of an ordeal, she looks great. Healthy, fit and her attitude and demeanor are positive. Me, I like to think that I am the same. I live my life in a way that I hope nobody will say “Hey, that guy looks sick.” It was like talking to a female version of me sitting across the table. Like I said, refreshing.

It’s something that I have blogged frequently about, the inevitable spiral of being chronically ill to the point where you become the “Sick person.” The unfortunate reality when the first thing someone says when they see you is to ask how you are feeling. It is not that it isn’t appreciated, it certainly is, but it tends to be your identity above all else that you are, offer, or aspire to be. It can become your identity. If you let it. She and I both refuse to let it.

But then the conversation went in a related but refreshing direction when she uttered a phrase that is not new or original, but timely as hell and needed to be said.

“Everyone has a card to play.”

It really struck a chord with me and we talked about it at length. The words “survivor”, “sufferer” are an extrapolation of the victimhood culture we live in. People fall back on identity to define themselves, inject their ordeals into unrelated conversations and situations to elicit a response, sympathetic of otherwise, or in the worst case scenario, to obtain an advantage or alter an outcome. My friend and I are both tired of it and refuse to “play our card”. We don’t care if you are a minority, a woman in a man’s world, Gay, trans, poor, or misunderstood. Don’t let victimhood be your defining trait. Just live your life.

Everyone has a burden to bear. That is the origin of the famous saying,
“Be kind, for everyone you meet is fighting a hard battle.”
But the true warriors don’t announce their burden to the world, they generally go about their business the best they are able. Yet many insist on letting their burden define them.

As we wrapped up, we inadvertently revealed that we both derive great pleasure helping and supporting others It serves several purposes; It is our obligation as human beings to support each other, it takes your mind off of your own struggles, and most importantly, it reminds us that everyone has something to deal with.

Here’s to being strong. Here’s to taking advantage of opportunities and not problems. Here’s to standing tall. Here’s to the day when equality is assumed and not demanded. Here’s to the end of the victim mentality. We all have so much to offer the world if we shed those shackles.

Most of the bloggers I follow have some kind of Chronic Illness. NONE of them complain. They just want to be normal.

What is normal? I suppose that is a topic for another day.


Buzzcuts, beauty and BS

“Bill, I’ve got a woman on the phone and I really can’t figure out what she wants. Will you talk to her?”
“Sure, Kristen. Just give me 3 minutes to get back to my office and transfer it over. Got a name?”
“Harley.” Kristen smiled and walked back to her section of the office.
“I’m intrigued.” I called after her.
“Knew you would be” she replied. She had seen the entire shelf of miniature Harley Davidson models in my office.
I made my way back to my office to take the call.

She was a very sweet woman and I knew I liked her from the onset of the call. It soon became evident that Harley’s call was better suited for the Sales Department but I gladly gave her my time. Her need was simple, she needed information on a Handicapped Accessible vehicle for her adult daughter who was afflicted with Cerebral Palsy. She had heard from one of her friends that worked with us that we were a good finance company. The problem is that we don’t sell vehicles, we only finance the dealers who do.
She not only needed financing, she needed to find a vehicle as well.

I really couldn’t do anything for her but a little voice in my head was whispering to me that I needed to try. I took her information and told her that I would call her back. She was thankful for my time.

I dedicated myself to spending as much available time at work to helping Harley and her family. I searched the websites of my dealer base for anything that remotely met her needs. Coming up empty, I searched outside my network. Everything I found was highly specialized conversion vans and they were over 30,000 dollars. Harley’s single mom budget was less than 10,000. The hydraulics alone on these vehicles were more than that.
The next option was full size vans, the ones that Municipal services used. There were an abundance of those, all higher mileage but meticulously maintained until they were retired. I found a reputable dealer and made the call.

Having negotiated a near wholesale price on a older, but very clean van I asked the dealer to stand by, that I would call him back as soon as I could. I called Harley and explained to her what I had come up with. It was not her first choice but recognized that it was all she could afford. I asked if she wanted to proceed. She did. I explained that she needed to file a credit report and an application. Once she did I would take it from there.

Everything checked out. Now the wheeling and dealing had begun. I had to coordinate with one of our registered dealers to buy the vehicle and then sell it to Harley. I jumped through hoops to get this done. But I did it.

Having never met Harley face to face, when the day came for her to pick up her vehicle I insisted that I be there. My manager and I drove to our retail store and waited for her to show up. Before long, a beat-up sedan pulled in. Harley stepped out and I immediately knew that she was named right. A short, strong woman built like a beautiful motorcycle. Big, beaming, ahem…headlights, a strong chassy and built for speed. She was beautiful. I watched her as she went to her trunk and took out a wheelchair, opened the rear door and lifted her adult disabled daughter out of the car unassisted. When she was done, and Breauna was secure in her chair, she stretched and winced. Her back was clearly killing her. She then turned and asked,
“Which one of you is Bill?”
I stepped forward and introduced myself. She threw her arms around me and thanked me for my efforts. Her smile could launch ships.

My manager and I made small talk with her for a bit. She then went in to sign the paperwork. Once she was done I showed her how to use the hydraulics for the lift. It became clear that it would be a process to get her daughter in and out with all of the steps involved in strapping her in but it was what she asked for.

After a few pics for the scrapbook, they drove off.

The next day, Harley called me in the office and asked me for my cell phone. I gave it to her. She called me that night. I learned her entire back story. Harley had been diagnosed with breast cancer 3 years earlier. Her headlights were not stock, they were surgical. She bounced back from that to suffer a back injury in a motorcycle accident. She still managed to carry her daughter unassisted for years. She wanted me to know everything about her and I gladly listened. We became FB friends that night and stayed in touch.

Last night Harley posted a picture on FB. Her head is shaved. Her trademark smile as broad as ever. She boldly announced to the world that she has cancer in three areas of her body and she asked for prayers.

I will gladly pray for her. She is always in my thoughts. She is an example of those times when a job can be a real vessel of positive change, to make a difference in someone’s life. But thoughts and prayers aren’t enough, I want real answers as to how this poor woman, despite her outward strength is forced to endure such physical and emotional trauma. It’s total bullshit to me.

God bless you, Harley. I’m still here for you. As you have been for me. You look beautiful in your buzzcut, because your beauty is beyond physical. It shines right from your gorgeous soul.


A familiar view

It’s 3 AM and I’m wide awake. I’d been admitted at midnight.

The clatter in the halls and the soft, incessant beeping of machines, as familiar as they are to me, could not be ignored. Television wasn’t an option, I had turned it off at 2. Canned laugh tracks weren’t masking the all-too-familiar sounds and sensations of the hospital room. I’d never been in this particular room before, but if hospital rooms were hotels, I’d qualify as a certified TripAdvisor reviewer. Trust me, they’re all the same.

I was preparing myself for a sleepless night. Once a huge deal to me, now it was no big deal. In a former life, being awake at 3 AM was panic time. I would be so worried about being able to carry out the responsibilities of my work day on no sleep that I would obsess about it and be up all night. Alas, that was when my life was structured and meaningful. Now, being up all night barely affected me or my meager itinerary. As I sat up in the uncomfortable, narrow bed I looked forward to the one thing I could always count in during a hospital stay, some good thinking time.

The last 3 days had been a blur. After a 3rd day of failing to get out of bed for more than an hour at a time, shivering under blankets, a non-existent appetite, and experiencing complete exhaustion at completing even the most mundane physical tasks I had forced myself to take a shower at 8 PM. The thought of removing the 3 layers of clothes in order to even get in the shower filled me with dread. I ran the water until the bathroom steamed up a bit and I forced myself to get in. As I did that I was already dreading stepping out of the shower to get dressed. I have never felt so vulnerable to cold as I have lately. I ran the water hot, hotter than usual and hoped that it would wash away whatever toxins were stealing my life force from me. The effort that it took to wash my tired body sent me into a coughing fit. I nearly passed out I was so short of breath. I stayed in the shower longer than usual, enjoying the heat and steam, and still dreading the brief but brutal moments of drying off and getting dressed. After mustering the courage to do so, I found myself so winded by the mere act of getting dressed that I had to take a break. That told me all I needed to know, I was going to the ER. I was finally convinced that this wasn’t just another “episode” that CKD patients go through. I was more than run down, I was sick.

The 30-minute drive to the hospital was easy. Sitting was no problem. Walking the long corridor from the main entrance to the ER proved to be more of a challenge. By the time I got to the registration desk, they were already scribbling “shortness of breath” as the cause of my visit. Never having been to this hospital, I had to go through the entire registration process. By offering up “transplant patient” at the beginning of the visit, I certainly sped things along. I was immediately seen by the best doctor they could offer that graduated from the bottom 3rd of his graduating class. I’m not being cruel, it’s a small NH hospital that is only equipped for so much.

I explained my history, as I had done so many other times. They took vitals and made pages of notes. When they didn’t recognize half of the meds on my carefully crafted list I immediately knew I was in Mayberry R.F.D. They got the chest X-Ray done and, as I suspected, it was pneumonia. They immediately, and by that, I mean in 2 hours, admitted me. Which brings me to where I am now, wide awake, without comfort, body worn down and my mind searching for clarity.

Despite my serene surroundings, I am bombarded by my thoughts. The last month has been a blur of illness and disappointments. Flare-ups of symptoms once under control had dominated my time and energy. Medicinal changes and side effects have sidelined me from almost everything I enjoyed doing. I am annoyed that the pneumonia is back. This is the second time I’ve had it and the last time was the final blow that forced me out of employment. I’m annoyed at the perceived quality of care I am going to receive. The staff is nice, but they clearly have very little experience with a patient with a history such as mine. I have enough free time to embrace some bitterness also. I have been so disappointed by the events of the Friday before. I had gone to meet some friends at a long-anticipated event and despite the excitement and the planning, I had felt so miserable that I had to leave early. I had so many questions and things to learn from these people. But my expectations of tales and laughter and stimulating conversation over a bountiful meal turned out to be sipping ice water and picking away unenthusiastically at a meal that barely interested me at all, trying not to show my guests how nauseous, exhausted, cold and dying to get out of there and into my warm bed at all costs I was. It further annoyed me that I was already “writing off” the events of the past week as “just another setback” and a part of the new reality.

Is this my new reality? The silent room gives me no answers, and I haven’t the strength in my lungs to hold my breath for one. I am at the point where I know that I am losing the person I was just a month ago. It’s not the illness talking, I know myself well enough to look past how I’m feeling now but to the future. I have been able to pull myself up from so many of life’s beatdowns, dusted off and told it to Fuck off. But at that time, the good days greatly outnumbered the bad. Am I prepared for the days when my “episodes” outnumber my good days?

I have to do something. I thought I have been eating healthy. I can do better. I thought I have been making good choices. I have to make better. I thought I was feeling pretty good. I must do something better.

When I get out of here, I think to myself, I need to make some changes.

As expected, I was released with an antibiotic after only one day. Left to fend for myself again. Left with time to think, to assess and re-evaluate. Where is my source of power? How do I tap into it again? What needs to happen to make me again crave the challenges outside of my doors more than the comfort of my own bed?

I need to be a conduit of inspiration, not an object of pity. I don’t think I’m overstating this. This morning, when I looked in the mirror…I looked sick. That I cannot accept.

 

Talking to granite

I never thought I would be the guy to sit in a cemetery and talk to a piece of granite. I have lost many, too many, friends and family and I always make my visits to their places of rest. But I don’t sit and talk. That changed when I lost my Dad.

Yesterday was the 4th anniversary of his death. I wasn’t in the mood to write yesterday, it’s a tough day for me. Living in a house that he built doesn’t help. I see his touch everywhere in the woodworking, design, and collectibles. As I write this I’m sitting in his favorite chair with his beloved dog sleeping at my feet.

4 years later I still tear up when I think of him and when I attempt to talk about him I invariably choke up. I have been fortunate to have been asked to speak at some events I am a part of and have foolishly attempted to speak of my father and consequently blubbered in front of packed rooms. Historically, I am not a crier. But when it comes to Dad I can’t control it.

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As a guy with a long family tradition of “sucking it up and moving on” I am puzzled why it is not getting easier as the years pass. Time heals all wounds, but it doesn’t fill all voids. His loss occurred at a time in my life I probably needed him the most. I was finally coming around to understanding the things he said. Things that I rejected in my youth that I later learned he was dead on about. I had just started to appreciate his simplistic approach to life; be nice to people, tell the truth and work hard and the rest will come. I had just started to recognize that people with his value system and work ethic were slowly vanishing and his presence was a treasure. I was at a point when I needed his eternal optimism to fuel me as I entered the worst chapter of my life. He was minimalism at its finest…less is more. Less showboating, less ego, less drama, and aggravation.

I miss him. The world was a better place with him in it. He deserved better. He worked so hard for so many years to provide for his family and build a retirement. He retired early because his co-workers were all dying young. He enjoyed about 3 years before Parkinson’s reared its ugly head. It reduced a strong, proud man to a mere shell in a long 8 years. Those years took more than his mobility, they took his pride and his independence. Death was a relief for him, I saw his face when he took his last breath.

My life has been especially challenging lately. I am trying to maintain the family optimism and positivity. It’s getting harder. I wish I still had him telling me that everything is going to work out. I suppose while I’m wishing for things I wish that he could have enjoyed his retirement. I wish that he could have celebrated his 50th wedding anniversary. I wish I could tell him how many things he was right about.

I wish that I didn’t have to tell a granite slab things that I wanted to tell him to his face.

Tell the people in your life how you feel about them today, don’t wait. Tomorrow is not a guarantee. You may find yourself sitting in a cemetery talking to granite also. If you’re reading this it’s because I chose to share it with you. Because I care about you and I won’t wait until it’s too late to tell you. Regret is as eternal as granite.

Light at the end of the tunnel

So relaxed, like never before

My arms nailed to the bed

My legs won’t move

Too numb to speak

No desire to try

Peace hijacks my body

the pain has fled

Is that a light I see?

Am I moving toward it?

I don’t care

I’ve longed for this

Free at last, done with it all

I surrender

Take me now

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Bright lights. Screaming. Calling my name

Come back to us they say

Yelling and prodding at my mortal shell

Are you in there…What is your name?

He’s back! someone says. The questions ensue

I’m back from where? 

It felt so good…

One of my late Grandfather’s favorite jokes was “I’ve seen the light at the end of the tunnel. It’s a train.” He was a funny bastard. But I beg to differ, and here is why.

 

“Cellulitis. Isn’t that the stuff that you suck out of the Real Housewive’s fat asses?” My doctor was not amused. I assured her that I was joking, that I was already intimately aware of what cellulitis is. I had it once before and my nervous joking didn’t cover how alarmed I was at this diagnosis. I was prescribed an aggressive antibiotic and given a phone number to call if the infection’s redness crept past the outlines she drew on my wrist and leg. I was on my own for the weekend. Football and bed rest.

I couldn’t help but reflect on the last time I had it. I remember it like yesterday.

I woke at 5:30 AM one morning in July feeling awful. Nauseous, raging fever and confused. My children were small, I knew that they couldn’t be left if my wife drove me to the hospital so I called my father. He rushed over and took me to the hospital. As we pulled into the dropoff area I opened the truck door, fell out and vomited all over the parking lot. Emergency techs got me into the ER. I had a fever of 104. An hour later they still didn’t know why.

I was admitted. In order to get me to relax they gave me morphine. The nurse working with me joked that I, and all men in general, were “big babies.” I wasn’t in the mood to justify myself, I let the morphine do its thing. What happened next will stay with me forever, I will need that long to explain it.

I felt such peace. I felt more relaxed than I had ever felt. My arms and legs felt as if they weighed hundreds of pounds each, I couldn’t move them. And I didn’t want to. All pain left my body. I saw blinding white light and I’m pretty sure I felt as if I was moving towards a tunnel. It was amazing. Until I came back. See, everything I just detailed I recalled later. What actually happened was the morphine attacked my weakened kidneys and I went down. Unresponsive for at least 3 minutes. My heart never stopped but I know that I was dead or awful near it. My nurse had come back in and seen that I was slipping away.

I woke to at least 5 doctors and nurses yelling at me, bright lights and beeping machines, repeated inquiries of “can you hear me?”, and “come back to us”. After what seemed like hours I was able to tell them my name and date of birth. I could see my mother and father’s concerned faces in the sea of people surrounding me. I was back.

After everything quieted down my nurse came in and tearfully apologized for calling me a baby. I didn’t care. As she leaned over my bed she leaned on my right leg and I screamed in pain. She pulled the sheet up and exposed my leg; it was twice as thick around as my other. I was immediately transferred to the ER. Cellulitis.

I spent 8 days in the ER. I almost didn’t make it. They couldn’t stabilize the infection. One hazy memory is of my wife walking in with my then 8-year-old daughter as I vomited all over myself. A bad moment indeed. I spent most of my time in a haze, frantically trying to figure out what I had experienced. I asked my mother about it. She said that I was down for the count. As if I had been dead for hours. She was terrified. As I put the pieces together I realized that I had seen the other side. And I am not afraid of it. I know that I will feel relaxation and peace, 2 things I have never had enough of.

Of course, I recovered, I would not be writing this otherwise. But today I was jolted to think that I could go through that again. I just hope that this new antibiotic works by Monday. Otherwise, I’m getting admitted again.

Oh well, worst case scenario is that I compare notes with my funny grandfather about the whole tunnel/light thing.