Day 9…A letter to my parents

A letter to my parents

This is a difficult letter to write. Mom, you are here to read it. Dad, you don’t get to hear this but I sure wish you could. If what I have been raised to believe is true, that spirits live on, then maybe you are aware of the things I have said to your stone. You know, the things I wish I had said when you were alive.

I have no complaints. Dad, you would laugh at that and say “oh good” but hear me out. A lot of people my age complain about their parents. They say they wish they had gotten more of this, less of that, etc. This comes in many forms; they wish they had more money, more TV’s, more vacations. They wish they had less curfews, rules, siblings, after-school activities. The list goes on. And this gives a foundation for blame. Did you know that I grew up lower -middle class? Well I did. And I didn’t know it and I didn’t care. It wasn’t until I had another friend’s house, dinner, Television or car to compare it to that I even gave it a thought. Those are just things. All I know is that I never needed anything. If I was to compare it to what my children had you would think that I was poor growing up. In reality I was just fine.

Things don’t validate the childhood, the “adult you” validates the childhood.

Dad, you came from a hard scrabble background. You were poor. Plastic on the windows and dirt floors poor. You learned early on, unlike your siblings, that hard work was the means to self-improvement and your only way out. Everything you had you worked hard for and you cared for those things and made them last. From you I learned so many things that I carry with pride; to work hard and ask no one for anything, to always remember where you came from, be yourself if people don’t like you it’s their problem, that things always work out. You were a dedicated father and you did everything you could to give me a better childhood than yours.

Mom, you survived a near-fatal childhood disease. Your life was saved by an experimental medication regimen. Your mother was a very proper woman with a too-high regard for appearances and a fleeting sense of humor. Your father a properly grounded hard-working but fun-loving WW2 veteran with a huge heart. Your little brother tragically died at the age of 4. Your mother had a tragic series of miscarriages. You became their whole worldYour mother was overbearing. You feared to do the same to me. I always thought you had high expectations of me to pick myself and dust myself off when I was hurt, I now know that you didn’t want to smother and shelter me like your mother did. Your light-hearted approach to life always kept me grounded. I could talk to you about anything and you were the perfect comic sidekick to Dad’s straight man. Your laugh is still infectious, you are sometimes silly. But you are tough, your ability to bounce back from anything has inspired me.

You were a great team. Your loyalty to each other was unlike any I had seen. I saw the way you looked at each other and I wish that I had experienced a relationship as loving. It still breaks my heart how disappointed Dad was on your 49th anniversary, he was very sick and predicted (correctly) that he would not get to dance with her on the 50th. He cried that day.

I learned so much from both of you and I credit you for giving me something that I see lacking in today’s world. Values. Thank you for being everything that I value in life; honest, caring, and genuine. Let there be no doubt, you did a fine job.

Your loving son

my best thinking

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As part of acclimating to the much slower pace of my new environment, I have set a mental goal of accomplishing something significant, preferably physical, each day. I will not allow myself to be a couch potato watching 12 hours of TV a day and then go to bed mad at myself. A walk, a brief workout, some yard work does the trick. Just an hour of my day and I go to bed feeling accomplished, if only in a small way. It’s part of dealing with chronic illness, keep challenging yourself.

This morning I stepped out onto the deck and surveyed the trees surrounding the yard, Pretty barren. Yup, today I would do the leaves.

I went inside and threw on Jeans, a Henley shirt, and a heavy sweatshirt. I searched for my headphones, grabbed my phone off of the charger and headed outside. It was a cold day but I knew that once I was moving I would be fine. It is sad that I had to even think about that but as my condition has progressed I have grown sensitive to cold. Just another thing to deal with I guess.

As I head to the garage to grab my gear I look back and see Mom in the picture window. She looks happy. Happy that someone is there to help her with the yard since her husband died. Happy that she didn’t have to ask me to do it (she never would) and happy that I motivated myself to go out into the cold. I’ve been moping around the house lately and she knows that I need to snap out of it.

The work went smoothly. Clearing leaves is mindless work. I knew that I wouldn’t get it all done today but I could put a good dent in it. Headphones blasted a Spotify playlist into my ears, quieting the roar of the leaf blower. I barely notice the leaf blower going side to side, as if unaware that I was the one operating it, switching hands periodically to ease the fatigue in my forearms. I became fascinated with small details in front of me, like the random leaf that refused to submit to the onslaught of my blower and clung fiercely to the ground before finally yielding. I began to ease into a familiar Zen-like state where I do my best thinking. It happens a lot during yard work. Usually, my mind races and my thoughts barrage me like locusts on a windshield. In this state, they flowed like lava. As I worked I found my problems were right there with me, waiting to be addressed if I had enough yard to handle them all. I was in the right frame to sort them out. I savor and enjoy such moments, they are so very rare.

I have been in a funk lately on the heels of some disappointing medical news. While not normally prone to depression, this news came from so far out of left field that it shook me a bit. And for the first time in a while, I was thinking as if ole Superman had finally gotten himself in deep. I was in my own head thinking about my expiration date. I was feeling bad for myself. But the zest in the crisp Autumn air reminded me of the days when I had unshakeable faith that things would work out. As I worked in my father’s yard I thought of his eternal positivity and envisioned sitting on the wall and talking, like we used to. I thought of my children and how there were so many things I wanted to tell them. I focused on things that I wanted to do, see in my family and milestones to witness. I thought more about life in my years and not of years in my life. I canceled the pity party and committed to change my attitude.

All this from a fall day and a leaf blower? It’s hard to explain. It’s the act of working, which I miss so much. It’s being outside, where I have always been most comfortable. It’s 3 hours of yard work and a significant dent in a huge task. It’s the ache in my muscles. It’s the sense of accomplishment. All of these things showed me glimpses of the kid who stayed outside in the yard, long after everyone else went in. He would stand in the yard arms back, neck back, chest out and let the autumn winds flow all around him. That kid loved life, saw God in everything and knew how to be happy. He would want me to do that again.

Day 8 of the 30 day challenge…a letter to a product/company

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Dear Candy industry:

Please don’t think that I don’t know what you are up to.

You are not doing it for health reasons.

You are not doing it to address the National Obesity and Diabetes epidemic.

You are not fooling anyone.

You are shrinking your product’s serving sizes and you need to stop. The “share size” peanuts M & M’s is what fat fucks like me call ONE serving. And there is absolutely nothing fun about excitedly opening a Snicker’s “Fun Size” and seeing a serving the size of a squirrel turd. What’s next, will we open the package and I’ll get a whiff of chocolate smelling air?

Please, for the love of God remember who made you. Fat kids who wanted to eat their problems away. I will monitor my own blood sugar thank you very much.

I thank you for your consideration in this matter,

 

A longtime fan

happiness

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You have escaped me
Or I’ve never really had you
You’re all they talk about
all everybody wants
I craved the sensation you give
kid’s books ended with you
and ever after soon followed
Life is not worth living without you
or so I was told
But I’ve lived without you
so it must be a myth
It must be nice
For those that know you
I’ll have to take their word
Until we finally meet
If we don’t it’s ok
It’s not like it matters
It’s been so long I don’t know the difference
For so many years I looked in the window
My life as it happened seemed like a show
On the outside looking in
Disconnected from the moment
the sad clown behind the painted on smile
I know you exist, I see you in others
Not sure if I need you but curiosity remains
Your name is happiness
I’d like to give you a try while there’s time

Crossroads…

cropped-cropped-lonely-man-by-the-bed1.jpgThe reason I named this blog as I did is that through my life I have been known to push through obstacles, illness and otherwise, and trudge on. My friends and family nicknamed me Superman because I seemed invincible despite everything that was thrown at me. It wasn’t always a compliment, in fact, it was sometimes a snarky shot meaning that I didn’t listen to common sense advice and other earthly notions. That I felt bulletproof. To be fair, they weren’t wrong. But that’s how I deal with things. It runs in my family. It is a good and a bad thing.

Putting on a good face presents well. I may have been sad and sick on the inside but I’m always going to tell you that I’m fine. My doctors gave me hell, told me that I wasn’t taking my illness seriously. I told them to leave me alone, I’m taking my meds and following your orders. You’re just asking me to act sick and I won’t do that. Right up to my transplant I pushed my luck, fought through the symptoms and feigned good health. I like to think that I spared my children from worry. Youth is hard enough without a sick father to worry about.

The downside of putting on a good face is that when the hammer falls it is more of a surprise to those close to you. Something that has been at the back of my mind all along is suddenly at the forefront of theirs. Word spread and the unthinkable happened, people starting feeling bad for me. The exact reason I didn’t make a big deal out of my illness. I hated how the first question people always asked is “how are you feeling?”

I suppose that I always thought there would be a cure. I woke each day hoping that something good was happening in some lab somewhere that was going to keep me off of dialysis. This strategy, regardless of how well it worked for me, was classic denial. I called it thinking positive.

What is so bad about positive thinking? It worked wonders for me. When I visited my Dr’s office I saw a lot of sick people. They didn’t see that when they saw me. I was working out, I was strong, my weight was under control and I walked with my characteristic “rooster strut” (courtesy of my wife, once again not a compliment). I refused to act like a sick person. I was actually told that I was an “inspiration” by a fellow patient. This mentality sustained me until the big day.

Post-transplant I thrived. I virtually ran out of that hospital determined to get my strength back and to make the most of the 15-20 years of good health my new kidney would give me if I took care of it. I bought a mountain bike, I went hiking, I hit the gym and I spent a lot of time outside with the kids to make up for the times that I sat on the sofa watching them play because I was too fatigued to join them. I had proved them all wrong, it was possible to positively think your way to good health. Even my doctors agreed that my way of dealing with it kept me strong enough to breeze through a difficult surgery and complex recovery like a warm knife through butter. I had vanquished the haters.

Then I rejected 4 1/2 years later. Almost overnight I went from feeling like Atlas to a 95-pound weakling. My bubble had burst. What I hadn’t been told is that the disease that had destroyed my original kidneys had could come back. And it did. I was mad as hell, how could they have not told me of this possibility?

Last week I went to see my nephrologist. My overall function is now 30%. In 2 years I have lost about 75% of my kidney function. I had absolutely no idea it was progressing that fast. I’m pissed, concerned and full of doubts right now of what my future holds, in particular, how long will I have what I consider “quality of life”?

I need to find that positivity again. Fast. Maybe even a little of that Superman. I liked it much better when everyone but me knew that I was sick.

an attempt at satire

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Imagine the country is a woman who belongs to a country club. And she receives a letter informing her that she is banned. Feedback welcome

Dear Madame Blue:

It is with great sorrow that I inform you that the party is almost over, that you are no longer the “it girl”.

When you first burst upon the scene, all of the old folks in the room took notice. The way in which you achieved your social status captured the attention of all of us. You were admired for your bravery, tenacity, individuality and of course your independence.

We all wanted to get to know you, to learn your secrets. Not everyone could do what you did. Some of us, admittedly approached you for their own benefit. It happens when you are on top. But you were gracious, you admitted that you were young and that you would make mistakes. You went so far as to put in on paper how committed you were to your beliefs. You even allowed for it to be amended. What an original concept!

You were interesting, exciting and full of new possibilities. We all wanted something from you. You obliged most of us, but insisted that you would help if your best interests were considered. Most of us found that to be fair. Those that didn’t kept quiet about it.

For a decent amount of time you did a good job of keeping your own house in order. We were all impressed at what you could do at such a young age. You kept an eye on what others in the room were doing but largely minded your own business. You were peaceful but strong.

Then the fighting started. Your house became divided and after much terrible fighting you almost split  in two. We watched to see how you would handle it. Your house stood after all, but it wasn’t the same. Bitterness and divisiveness prevailed.

When all of us got into a major ordeal, you picked the side you most agreed with and got involved. Your resources were a major part in ending a major dispute. It ended badly. Unable to reconcile, we got into another huge ordeal a mere 21 years later. Once again you picked the side you most agreed with and pitched in. Your resolve was amazing and appreciated. Most of us thanked you, the losers licked their wounds privately.

Then you changed. You began to meddle in the business of others. You were less discriminate in who you did business with and picked some fights that really weren’t yours. You meant well but didn’t think your actions through and you suffered some real embarressments and losses. And your family was torn by them. We began to resent you. The infighting in your family continues to this day yet you continue to focus on everyone in this room.

Madame Blue, there was a time when a single word from you would turn our heads and silence the room. Now, you have become a cautionary tale. Your family is struggling and needs you and you are not paying attention. You are not rewarding those that have worked hard and inviting the wrong people into your home. You are not listening to the ones that love you. You don’t even know that when you are not looking we are poking fun at you. Sure, some of us are nice to your face because we want something from you. But we used to look to you for leadership, for the better way to do things. Now you are a reality show. And your ratings are plummeting.

You once had so much potential, your accomplishments admirable and your endorsement invaluable. Please don’t squander what influence you have left by destroying your own house. Lead by example, take care of your family and be the beacon we all thought you to be. Be as good of a citizen as you are a warrior. There is still time and we need you in our club. The old you. You used to be great and can be again.

But until that time, we’d rather you stay away for a while. At least until your house in order.

With regrets,

The Rest of the World

The ride of, or for, my life…

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frus·tra·tion

frəˈstrāSH(ə)n/

noun

  1. the feeling of being upset or annoyed, especially because of inability to change or achieve something.

“I sometimes feel like screaming with frustration”

synonyms: exasperation, annoyance, anger, vexation, irritation

Yes, that is one definition. Here is another.

When you think you are all set with something for a while and you then find out you are not.

MY Synonyms: annoyed, pissed off, here we go again

Almost six years ago I had a kidney transplant. Truly a landmark moment in my life. A future of dialysis and a poor quality of life magically transformed into a bright future with at least 15 years of good health through one amazing gift from one amazing person. It was up to me to take care of the new kidney. To diligently take my medications, eat healthily and listen to my doctor. In addition, my donor was a friend and I further owed it to her to take care of her gift.

I looked forward to 15 years (or more) of good health and I was committed to taking care of it. I hit the gym, I started mountain biking, I ate right and watched my weight. Imagine my disappointment when 4 years later I had a rejection episode. My body will always try to reject the new organ so I take a lot of meds to suppress my immune system. Yet I ended up in the hospital with a severe loss of kidney function. Over the next 3 months, extensive testing will reveal that the original disease that destroyed my original kidneys had returned. The kicker was the Transplant team didn’t feel it necessary to tell me about this possibility. I was pissed. My prognosis was, while uncertain when, my new kidney would eventually fail to the point that I will be back where I was pre-transplant. That was not a good place.

Kidney disease has a wide array of unpredictable and unpleasant symptoms. Besides feeling “washed out” it is not uncommon to develop intolerances to everyday foods that generally would be considered healthy. Cramping, seizures, even cardiac events are possible when in failure if not monitored. As I progressed towards transplant before I developed anemia. I was cold all of the time. I required injections and a multitude of pills that would block this and one that would boost the other. Back and forth to the pharmacy and specialists. It was a roller coaster I was hoping not to ride for a long while.

This July I was told to expect the ride to begin soon.

I got my lab results back today. I’m anemic. Yay.Time to strap in because it’s going to be a long ride.

wheeeeeeeeeeeeeeeeeee!