Tag: feedback

the quest for open-mindedness

I have faced many obstacles in my life as I have gotten older. Health issues, financial issues and a turbulent marriage both scarred me as well as taught me many lessons. I have largely let go of anger and bitterness over things from my past and have learned to pick and choose what I allow to bother me. I can almost say that I have conquered all of my demons. Except one. I struggle with open-mindedness.

To be clear, I am not closed-minded by any means. I am largely receptive to opposing viewpoints and I am civil and tolerant of those who disagree with me. But that’s a learned behavior not a mindset. In my heart of hearts I still get annoyed, even angered by things that go against my grain. And it bothers me.

I’m sure that I am not alone in this, especially among my age group. I was raised in a wonderful time period. I was exposed to the influence of my Grandparents, people who lived through the Great Depression and a World War. They knew frugality, community and practiced old-fashioned values of honesty, integrity, civility and the unspoken bond of a handshake. I then had my parents, who had the luxury of the same influence but also of the societal shifts in the 50’s and 60’s that saw great turmoil but also resulted in an expanded view of the world and society in general. Yet, they both were largely black and white on a lot of things. Unfortunately, I have been accused of that very thing. I was very bothered by that accusation. I didn’t agree and resented it. I had a black and white reaction to being called black and white. Isn’t that irony?

Being black and white is a defense mechanism. We take between 18 and 30 years to form our identity and belief system. Our identity can either be our aura that casts light on the world or a suit of armor that shields us from that which threatens us. I feel it safe to say that as we get older it is almost inevitable that our identity becomes a shield. Unless of course we make the effort to recognize and change the pattern.

This is the road that I am on. I am annoyed at the extremes of society that gnaw at my sensibilities. While I have never lacked compassion or empathy, I have had a fairly narrow view of the world. I sometime feel that part of me fights to maintain that narrow view as another part of me struggles to escape the confines of my upbringing and take a broader view. It is a daily struggle.

The knee-jerk reaction is the thing that has to go. Life is not about what happens but instead how you react to it. The knee-jerk reaction happens when something that you don’t agree with results in a visceral and personal reaction. But it’s not personal and it only affects your life if you allow it. Very few things are actually a personal affront. Yet we act as if they are. I’m guilty of it. It took me a long time to admit and address it but I’ve made progress. I have come to the conclusion that in this day and age of bad behavior, short attention spans, poor education and general lack of civility people have taken sides. When one takes sides, it is not unlike war. Defend your position and attack when able. It’s going on everywhere but I refuse to add to the insanity anymore. I have chosen to take the “walk a mile in their shoes” mentality. Every hot-button issue exists because a percentage of the population is affected by it. It is not an attack on me and I need to remind myself of that. Constantly. It sometimes requires me to even count to 3.

Everyone is entitled to an opinion. There is a caveat of course, it must be an informed and properly communicated opinion. Just as in childhood, we responded positively to a even tone of voice laced with understanding, even love. When we were yelled at, we closed ourselves off and most importantly, fought to keep the words out. I am very open to an even voice, I am angered by being yelled at. In the whirlwind of the hundreds of issues debated constantly, the message is often drowned out by the noise and anger behind it. Thus, so is the reaction to it.

I have decided to count to 3 before I speak or type, I will then look at as many angles of the issue at hand as I can. I will do some research if necessary. Most importantly, I will try to not be offended. And then, once all that is completed, I will measure my response. If I even choose to offer one. I’ve been practicing this recently and I have to tell you it works. If more people adopt this mindset, imagine the difference in our current climate?

At an age where many are closed off, I want to open up. Many of my fellow bloggers are already on this path and I openly admire them for it. They are ahead of me. It’s up to me to catch up.

I want to end with a question? Would you call yourself open-minded?

a good week

I have to say, it’s been a good week. Other than a killer case of gout and dry-eye, which is essentially a bloody eyeball with a centralized headache behind it that makes focusing unbearable, things have been good.

Dialysis, I am happy to say, has made me feel a lot better. Some may complain about it and feel bad for themselves but I am here to say that I feel better than I have in months. So much so that I stepped forward to help out at the local Community Club meeting. I helped, alongside 7 other awesome people, prepare a meal for 86 people and then had enough energy to serve, clean tables and wash dishes after. While I admit that I was hurtin’ for certain by the end of it, I know that I could not have done half of that even a month ago.

My Social Security Disability came through this week. I have been waiting a long time and it has never been a guarantee. I was very disheartened when I was denied in December. I was very encouraged when I had my appeal this past August but still, I was not certain about being approved and even if I was, how far back would it go. It worked out perfectly for me, I will be getting a retroactive settlement from October of 2016. Over $30,000 to soften the blow. I will give my family half of it and that should set them up pretty good. I will pay back my mother and catch up on everything I have put off for the last 18 months. In the Spring I will buy a used motorcycle.

My friend Steve, who I wrote about last week must have been blessed by all of you that wished him well. After several years of waiting by the phone for MA General to call him, driving in to be tested against a cadaver because there was a fatality that may be a match for him, he got the call on Wednesday. This one was a match and he got a new liver. He is recovering nicely now. I am absolutely thrilled for him. As the saying goes, it couldn’t happen to a nicer guy. He’s a good man and a great friend.

Well, that’s it. Superman is back to his old self (for the most part). My strength is coming back, my sense of humor has caused people to say “you’re like the old you!” and I’m even losing a couple of chins in the process of dialysis.

I’m going to enjoy the day because this is a good one. I’m going to run with it because, after all, who knows what tomorrow will bring right?

where were you on that fateful day?

17 years ago to the day
I can’t see the world
quite the same way
disgusted by how far
some will go
to destroy those
they don’t even know
it escapes me
it really does
the hatred and venom
their twisted cause
For some the anger has faded
not me
I’m eternally jaded
where were you?
on that fateful morn
when buildings fell
and hearts were torn
I still look to the sky
I stop and ask myself why
airplanes staying in the air
are no longer a given
our only crime?
our way of living
lives changed forever
innocence was lost
the widows and orphans
such a tremendous cost
if broken spirits were the goal
the bastards failed
Old Glory’s still on her pole
It brought out the best in us
the tables were turned
we rose to the occasion
as the buildings burned
First Responder’s responded
with soldiers and regular Joe
reacted with a fierce resolve
that we had yet to show
for a short, glorious time
we were all brothers
put aside our differences
respected each other
came together as one
hatred can only conquer
if you choose to let it
hang your head today
and always remember
The weight of your heart
on this day in September
mourn for the lost
the brave and the strong
celebrate those that fight for us
all the year long
on this anniversary
of an event so heinous
may faith, hope and charity
always sustain us

Why me? Why NOT me?

“Listen carefully, Billy”, my Grandfather said. He looked me straight in the eye.
“I cried because I had no shoes. Then I met a man who had no feet.”
“What does that mean Grandpa?”
“It means, Billy, that you should never complain because there is always someone who has it worse than you. Be happy with what you have.”

I was a young boy when he said that to me. I don’t remember what I was complaining about but after that exchange I learned that men, men like my Grandfather, don’t complain.

Have I complained since then? Of course, it happens. But my brain immediately flashes back to that quote. And shuts me down. It has served me well, in fact it was one of my greatest life lessons and shaped who I am today.

People often told me during the height of my Illness that my positive attitude, and crippling denial, inspired them. I wasn’t waking up with the intention of inspiring others, I was just listening to my Grandpa. I was keeping my kids from worrying about me. I didn’t want to burden anyone.

People tell me now that my jokes and overall positive attitude about my current situation helps them. How else am I supposed to be? Should I complain? It’s not my style. It’s not becoming of a man. And nobody wants to hear it.

Why?

Because someone always has it worse. I know it. I’ve seen it.
I have friends who have lost children at the toddler stage to cancer.
I’ve been to Children’s hospital in Boston and read books to children who would never leave that hospital.
There are families everywhere dealing with dead children, wounded Veterans, mental illness, MIA’s and POW’s, gun violence, terminal illness, no Health Insurance, pending bankruptcies, the list just goes on and on.
They all have it worse than I do.
Most of them wish they, or those that they lost, were only on dialysis.

I’m strapped to a dialysis machine 3 days a week. So what? I’m alive. It may kill me, and then again, I may get a donor. It could be always be worse. One thing I have learned in my 53 years of walking this green earth is that I’m not special, I’m just a cog in a great big wheel. I never say Why me?
Why not me?

I have always said that where I am is where I am suppose to be. That applied wherever I was. Why isn’t it feasible that I am right where I am supposed to be doing what I am supposed to do at this moment?

I was given a brutal reminder of this tonight when I got a call from my friend Steve. I met Steve when I lived in an apartment complex as my family tried to bounce back from the foreclosure. We were instant friends. We hung out often and had a lot in common, in particular crumbling marriages and the love of our children. When he got divorced and moved, we stayed in touch.

Steve became very ill after he moved. His diabetes, once under control, had destroyed his liver. He needed a transplant. When I had mine, he was the first friend to visit. He had questions of course, but he was there as a friend.

Flash forward a few years. Steve was deteriorating. It was affecting his job as a Teacher. He was missing work and couldn’t find a balance in his meds, the side effects were destroying him. Soon after, a group of Teachers that praised him to his face went on to stab him in the back. He was forced to defend his ability to enlighten young minds to a committee of people who wanted him gone. After suing the Teacher’s Union he claimed a meager, insulting settlement and he walked away with his dignity in his pocket. No accolades or thanks for his 20 years of service or retirement party.

Steve lost most of his friends. Or they lost him. He is now pending disability. He just sold his car because he can’t make payments. His ex-wife is taking him to court over child-support he can’t pay. She knows he’s trying without income but wants to punish him. He can barely talk, an hour after he takes his meds he loses control of his voice. He is on a list for a cadaver transplant, it’s his only hope. Unlike a kidney, a Liver cannot be given by the living.

Tonight, I asked if he would drive up and spend a couple of days with me. He can’t because he has to be nearby in case there is a fatal car accident that will produce a proper tissue match. Plus, he has court tomorrow because his ex-wife is not done ripping his testicles from his scrotum.

Steve would love to be me. Right now, I love being me. I have friends and family who support me. My wife acted with dignity and compassion in our divorce. My children love me and will never be a pawn in a big game. I won’t die if I don’t get an organ donation in the next few months.

I worry about Steve right now, he has been a good and loyal friend. I am not worried about me right now at all.
Why?
As sick as he is, he was the one to call me to see how I was doing. How about that?

Were you to ever utter the words “what else can go wrong?” the universe very well may take it as a challenge.

The End of Faith? — Tom Being Tom

Faith. Many of us have struggled with it our entire lives. Many of us will never truly reconcile the notion of a higher power. Unfortunately, we also fall terribly short in being able to discuss our differences on this complex and polarizing subject.

And then Tom of Tom Being Tom wrote this. Which I will now share for your reading pleasure. Do you follow Tom? If not I only have one question…why wouldn’t you?

I don’t believe in gods. Those of you who know me know that well, and those of you with even a passing sense of who I am probably understand that, too. 38 more words

via The End of Faith? — Tom Being Tom

Do you remember?

Do you remember
the racing heart
the angst
the fear
of making
a move
that can never
be undone?
To Hell
with everyone
they don’t
understand
what we had
and could be
Part of me
stood at the brink
of no return

I charged on
I shocked you
rocked you
knocked you
off your feet
I rolled the dice
put it all
on Red
that you
were the one
The stakes high
the timing nigh
I made my move

You later would say
it was the day
you had waited
with breath baited
it was then
that I knew
That I would
never
be good enough
for you
If it matters

I remember

My special purpose

On Thursday I entered the dialysis clinic with my bag containing a blanket, books, my laptop, headphones and half of the trepidation I had felt on my first visit. I was greeted by an entirely different Nursing Staff, which gave me the opportunity to drop my “oil change” joke 💀. It was fairly well received. I’m going to ask for a tire rotation next time to test the waters.

I already know the routine. I weighed in and sat down while 2 nurses, 2 potentially new sounding boards for my repertoire of Dad jokes, went through an impressive routine of programming the machine and unwrapping needles and fastening clamps and god knows what else. It really is something to watch, it must have taken a hell of a lot of training. When they were done and I was hooked up, they went on to other patients and I settled in for 3 boring hours.

I wasn’t in the mood for TV and not ready to read so I looked around the room. There are 12 stations in the room and every chair was full. I recognized most of the patients in the room from my first visit. The staff was all new to me. In particular I noticed a thin, older woman with a buzz cut making the rounds of the patients. I figured her to be the Nurse Manager. She was making her way towards me. After spending a few minutes with the gentleman next to me she came over and introduced herself as Kim, the clinic’s Social Worker. She knew who I was, had researched my case and apparently was looking forward to meeting me. Part of me wishes I could say the same. I respect social workers and what they do, but their goal is to get me talking about myself and my condition and how it has affected me and everything else that I don’t want to talk about. I deal well by not talking about “it”. Social workers chew away at my armor.

Kim sat down next to me and asked me a few questions about my overall reaction to the dialysis process, was I feeling better? Did I have any issues or complaints? Standard stuff. I immediately found her east to talk to. I had been anticipating an interview and instead found myself in a conversation. I certainly had time so I decided to drop my guard a bit and see where it goes.

The questions flowed easily from her and although it was standard fare; how long have I been sick; my marital status and my living situation. I answered all of them honestly and in some detail. She was taken back by my story, especially at the saga of my marriage collapsing. She kept asking, in different ways, if there was a chance at reconciliation and I continued to say no. She was surprised at my acceptance of the situation but dropped the subject. She then asked me if I was working, would I be able to or plan to in the future. I explained my situation with SSDI and that seemed to satisfy her. She then asked me what I used to do for work.

I found myself telling her all about my most recent position at the finance company and of all of the things I loved about it. I don’t know how long I spoke of it but when I was done and looked at her she looked captivated.
“If you could see the look in your eyes as you talk about that job” she said.
I had actually teared up as I had told her my tale.
“It meant a lot to me, Kim. You will never hear me utter a word of hubris, but when it came to that job I was damn good at it. I miss it.”
“I can tell.”

The conversation eventually wound down and she moved on to another patient. The emotional reaction to talking of my career lingered on. I explored it deeper and had an epiphany of sorts. Of all of the things I hate about my current situation is that I am no longer needed by people in my life. My family no longer seeks or expects support from me. I no longer go to work each day and try, in some small way. to make a difference in someone’s life. See, I had no throttle control before this happened. I was “all in” on life with family and career. I was active as possible as a parent and a husband, Teaching, mentoring and loving my kids while giving what remained of my ass to my job was what I lived for. I was a doer, a guy that made shit happen. A guy people came to. I was a great father, husband, friend and co-worker. I rode bikes and walked miles in the name of charity. I donated money I didn’t have and didn’t care.

Now I have none of it. Maybe the pace proved too much for my body.

I have beaten to death my family life on this blog and it is well documented that I love my family with all of my earthly strength. But I haven’t discussed work often and it was a big part of who I was. Men have often been accused of strongly tying their self-worth to their profession. I was guilty of this. I vowed never to be the guy who called in sick and no one noticed. My job, to quote Steve Martin in ” The Jerk”, I had found my special purpose.

The days when people came to me for advice; when calls were transferred to me because no one else knew enough or how to talk to an irate customer; having the owner boast that you are the “best in the business”; being given a seemingly impossible situation and finding a way to fix it. I have such fond memories of talking to people where the conversation started as a confrontation and ended with a “thank you.” It wasn’t that I was particularly skilled at everything, I just knew how to talk to people and I really, genuinely cared about them. I was proud to go home many days of the week with the knowledge that I actually may have helped someone through a tough day. I don’t have that anymore.

I have tried to be as useful as possible since the collapse. I volunteer at the food bank, I help some of the older people in town with basic chores. I don’t charge them, they don’t have the money. I am kind to my fellow man and I put out zero negative energy into the universe. I hope to become healthy enough to volunteer at a camp for the families of terminally ill children next summer. I am being the best person I can be.

But I don’t feel needed. I can’t believe how much I miss that feeling.

My week thus far…

Friday I received a call from my new Nephrologist. He had spoken to my Transplant team and it was decided that dialysis was needed immediately, despite the fact that the fistula I had recently had installed was not mature yet. He had made arrangements for me to report to a local hospital on Monday morning at 10 to have a temporary “port” installed. It was also scheduled that I would have my first dialysis treatment the next day. They clearly weren’t playing around.

I spent the weekend in a bit of a funk. Despite knowing that dialysis was inevitable, I still dreaded it. Despite all accounts that it would make me feel better, I had this horrible picture in my head of what it would be like. I was also dreading the surgery.

I reported at 9:45 to registration and was immediately led by the charming and matronly Alicia to the surgical prep area. I dutifully removed my clothes and signed all of the paperwork that I commonly refer to as the “I will not sue your ass if you fuck me up on the table” forms. Alicia was great, very comforting as she explained the process to me. It sounded rather unpleasant but hell, I would be knocked out, right?
“So, who is driving you home?” Alicia asked me.
“Ummmm….I am.”
“Oh dear.” Alicia replied.
“Oh dear, what?” I asked incredulously.
“If you drive yourself home after anesthesia you will be driving under the influence of a narcotic. Your surgery will have to be done with a local only.”
“When I talked to Doc on Friday he gave me the choice of driving myself or getting a ride. Not to be a bother I didn’t ask my mother. The info you just gave me would have been helpful.”
“Sorry, hun.”

I was wheeled into the Surgical room. I was injected with a local and a numbing agent. A tent was put over my face and I was told to lean my head as far to the left as possible. I was then told to relax. Yeah, right. My surgeon then, with the assistance of a radiologist, snaked a tube through my neck, into a major vein stemming from my heart and then pulled it back out my chest. A tube was then attached to my chest. It’s there until my fistula is ready. I felt everything. I can only describe it as having a giant fish hook inserted into my neck and pulled through my chest. My head was screaming, my neck was killing me and the entry point at my neck was excruciating.

Then I was told that it was all over.

“Good job.” I said to the surgeon.
“I should say the same to you.” She replied. “I’ve never done this surgery without full anasthesia. You did great. I’d want to be knocked out until Christmas to do what you just did.”
“Thanks. But remember that there is a fine difference between brave and stupid.”

I was sent home with no painkillers but Tylenol. I was up all night in excruciating pain.

The next morning I arrived at Dialysis. When I pulled into the parking lot part of me wanted to put it in reverse and explore other options. Then I went in anyways.

A sign at the door said ring bell for assistance. As soon as I did a tiny nurse wrapped in scrubs and a mask opened the door and greeted me by name. She was expecting me. To break the ice I said “Hi, I’m here for my oil and filter change.” My tiny nurse laughed.

I went inside. My first reaction was that everyone looked so sick. Yes, I know that I am sick but I really don’t look it. That’s no accident. The patients in this room were fragile, thin, asleep. Not one person was anywhere close to my age. The gentleman next to me looked just like my father…a month before he died.

All in all, it wasn’t too bad. I have painted a terrible picture of dialysis when in fact I did feel a little better when I left. In a 2 1/2 hour session I lost 3 lbs of fluid. That’s a good thing. I’m easily carrying 20 lbs of fluid that is doing nothing but putting a strain on my heart. The only thing I don’t like is I’ve never sat in a chair for 4 hours before. By Saturday I will be up to 4 hour sessions. But I’ll manage. I had a TV, headphones. a blanket and a fucking great book written by a fellow blogger that I am almost done with.

I can do this.

Now if I can only get used to this turkey baster sticking out of my shirt and the constant bleeding at the surgical site I will be just fine.

Everyone has been treating me like I’m going somewhere. Allow me to take this opportunity to tell you that I’m not. I still have a lot of shit to do.

Blogoversary

1 year ago I started my blog. I was at an incredibly low point in my life and I believed that putting it to paper, putting it out to random strangers would assist me in exorcising my demons. It did so much more than that.

230 posts, not including many discarded, later I find myself in a caring, supportive community that has embraced me at best and at the very least allowed me to share my unusual, unique and perhaps inappropriate take on life, love, family, work, relationships and chronic illness.

My blog, and consequently you, have become part of me.

Thank you from the bottom of my heart for your encouragement, support, friendship and feedback. And of course, thank you for reading…

Fingers crossed

I had my appeal hearing for my Social Security Disability claim yesterday. It’s been 8 months since a bureaucratic hack, in all of the infinite wisdom that can be collected by living in his mother’s basement, decided that I wasn’t disabled. I was deemed “technically able to work in the field previously worked.” This decision was made despite the overwhelming evidence that would prove to the simplest of minds that I could barely walk due to massive edema, and was immunosuppressed to the point that a common cold would result in pneumonia for me. It could, and it did in fact.

For 8 months I have been without income, angry and bitter about the denial and waiting for a chance to try again. I hired an advocate and they lobbied heavily for an early appeal, the original projection for an appeal was 12-18 months. Thankfully it only took 8.

As the date grew closer, my advocate and I scrambled to make sure everything was in order. Medical records were chased, prescription lists were updated and I was taught what to expect. My preparation was flawless, my nerves on end. No longer believing that Disability is a slam dunk, and with my history it certainly should be, I had little confidence that the right thing would occur. Coming within a week of the trial I felt like Red in Shawshank Redemption up against the parole board towards the end.
red
“I know what you think disability means Sonny, you just go ahead and mark your little paper there because me, me I don’t give a shit.”

It’s called rejecting them before they reject you.

Then, after speaking to my attorney, I found that I had a very good case. They are routinely reticent about statements like that for fear of false hope (Me, I’ve had plenty of that) and letdowns. Dialysis, which I am scheduled for but not on due to my recent surgery not being healed yet, is almost a guarantee. I only needed to get past the “Vocational Consultant” that would be on speakerphone during the hearing deciding if I was fit to still work. Probably the same one that kicked me in the pills the last time.

Day of the hearing my attorney and I met one hour before going and game planned. Her strategy, besides familiarizing herself with my medical history (here, memorize these 3 encyclopedia’s before lunch) for a knockdown opening statemen, was to shift gears on the vocational part. She wanted me to tell them what I used to do for work, and to not hold back.

We went in. The judge had a nice face and a pleasant demeanor. She immediately demured that my medical history is powerful and my work history solid (meaning not a slacker by resume). It was encouraging. My lawyer looked happy in her seat. We came to the vocational section and I was asked to describe my job skills and responsibilities. I took a deep breath and painted a picture, a true picture, of a frenetic but wonderful position in which 2 days were never the same. I told of a workweek without prediction, of being called away at the last minute, of long days and early starts. I told of being the go-to guy with any and all problems that no one else in my office could, or wanted to handle. When I was done, the judge, clearly impressed, asked the “vocational expert” if there was such a job out there that matched that, and did she think I was able to perform it.

After careful consideration she admitted that she had nothing. No such job exists.

My attorney believes it went well, that I should definitely be awarded. The only question is how far back they will date the claim. If all goes well, it will be retroactive to November of 2016 when I was initially rejected.

I will know by the end of this month. I am quite (cautiously) optimistic.

If you consider yourself my friend, please cross your fingers for me. I never use the word, but I deserve this.