“After great pain, a formal feeling comes. The Nerves sit ceremonious, like tombs.”

On Being Visited by the 10th Daughter of Zeus

Running is who I am. Regardless of what my leg is doing. Regardless of how much weight I’ve gained. Even regardless of whether or not I am doing any running, it is the running life that I most associate with. I stare at runners on the river, I critique their form and choice of footwear. I am a runner. But I no longer look like a runner. I no longer run. The hardest and saddest aspect of being diagnosed with pyoderma gangrenosum is that there is not a lot of information available on how to live day to day with it. Additionally, the treatments are often shots-in-the-dark and are fraught with their own long-lasting and negative effects.

Over the last couple of weeks, I have been attempting to get back into running. Clearly, even if I exacerbate my PG, I need to at least begin getting back into shape again. One of my favorite runs is on Heartbreak Hill in Newton. It is not the best place to get re-started on a running program as basically this leg of the run is 1.5 miles uphill and 1.5 miles down. Rather boring as well as somewhat demotivating as you are inevitably going to be running next to some very hardcore runners as this hill is part of the Boston Marathon route. But I love it simply because it has always been my guide to the shape I am in. Making it up that final hill without stopping is something I have not done in over a year. In order for me to feel like I was back on the wagon, I needed to conquer the Hill. 

Well, I am in no condition to run 3 miles yet, but I accepted that fact and promised myself a combination of both running and walking. Even if total distance running was only a couple hundred yards, I would accept that as long as I did the 3 miles somehow.  I began running and within seconds already felt like my legs and my heart were not into it.  I kept my head very low so that I would not see the runners pass me. I could no longer tell if I were running uphill or downhill. The air was already steamy and smelled like iced tea, without the ice. It wasn’t long before I began walking. Meanwhile runners were passing me. Some were the pretty BC coeds trying to lose their Freshman Fifteen and others were the hardcore runners with their zero-percent body fat, graceful strides and glistening skin. I did my best to ignore them. Instead of motivating me, they were poised to make me very self-conscious. Any excuse NOT to be out there was a good one.

I managed to keep my mind off how I looked. When I approached the bottom of the last portion of the hill, I convinced myself that I had the strength to run, without stopping, to the top. I went into an almost Zen state where my shoulders were relaxed, my gaze was fixed and my legs were on atuo-pilot. As wonderful as that feeling was it quickly turned to chaos as my breathing became labored and my legs physcially hurt. I was practically flailing my arms as I approached the half way point. I maintained my gaze upon the stop sign up ahead that signaled that I could at least stop for as long as it took me to turn around and start back down the hill. I also began to get angry with the state of me. I quit with an audible “F*ck, f*ck, f*ck!” I put my hands on my knees to catch my breath and ponder the body I’ve become; a body unrecognizable to me.

Then magic happened. At that moment, a female runner passed me. She was one of every runner on the hill to have passed me. In my opinion, the perfect runner. She was combination of Kara Goucher with her fierce intensity and Tara Stiles with her litheness.  She was clearly focused on her run and making it up the hill  She was probably running at a sub 7 minute per mile pace and did not need to be distracted by anybody. She deserved to own the road and have everyone give way. She passed and was about 50 feet in front of me, when she stopped and turned around. I couldn’t even fake it (as I normally would). I was in pain and disappointed and frustrated with me.  Practically in tears. I mean I have 5 marathons under my belt! I have run this hill NOT at mile zero like I was today, but at mile twenty as it is was when I ran Boston three times.

She walked back and though I was dripping in sweat, I am not sure if she even managed to glisten. But instead of being grossed out by the image of me, she approached and without flinching, put her hand on my wet shoulder and bent down to my level. Looking me right in the eye, she said “No matter how you feel right this second. No matter how frustrated you are – just remember that there are millions of people who are NOT out here in 90 degree heat. They are not even trying to do what you are doing. We can both celebrate that. Don’t be angry with yourself.” She ended it with a perky “Have a great day!” and continued up the hill as if she had never stopped. Then she crested and vanished from view. All I managed to say before she darted was an impotent “Thank you.” 

I would love to say that she motivated me to sprint up the hill, but that is not what happened. I sat down on the grass and just thought about what happened. Here is someone who had no reason to stop. Here is someone who had no reason to even acknowledge my existence and yet, she did. She took the time.. She broke her stride and her concentration. She stopped. She stopped because she sensed that I needed an “attaboy.”

I simply walked the rest of the way.

I doubt I will ever see her again and even if I did, I doubt I would say anything to her if I did. Just imagine how awkward it would be if I were to scream out “Excuse me! Excuse me! Remember me? You held me and made me feel good?!” I would assume she has some pepper spray on her holster of Goo.

Whoever you are, I thank you.

5 Things I Learned This Week:

• Hockey really matters – Thanks to the efforts of the Boston Bruins and living with some HARDCORE fans, not even I considered it suffering to watch hockey well into JUNE!
• My neighbors lived in slum – All 6 families jammed into a 2 family house, lived in deplorable conditions. After living next to that house for nearly 40 years, I am surprised I did not know that. The house is being demolished to put up 5 townhouses. I took that as my queue to sneak around in the house after everyone moved out. GROSS would be the only word that comes to mind.
• There is no limit to the number of times I can eat at Pizzeria Regina in the course of a week – As much as I am proud of being a Bostonian, I must say that the pizza here always failed to impress me (blaming the Greeks for that). There are essentially 2 or 3 really exceptional pizza places in the entire city. One being Santarpios in East Boston. No trip to Logan Airport when I was growing up would be complete without a pitstop at Santarpios. The other is Pizzeria Regina. Now that they have opened a location a few miles from my house, I CAN’T GET ENOUGH OF THE PIZZA! I will be heading there on Friday….for the 3rd time this week.
• Tapering off Prednisone can bring on even more issues than simply staying on the stuff. I am EXTREMELY tired all day. I am still gaining weight and my mood swings all over the spectrum. I am constantly achey and my head is always swirling. The pinkie and ring figers of both hands are numb enough to make it difficult to throw a baseball or carry groceries. My ankles are swollen. My fingers are swollen to the point that I can’t wear my wedding band (curses!). I sweat like a sweaty fat guy and I need to catch my breath walking up0 a couple of flights of stairs. My legs can develop severe charlie horses that last for hours simply by walking across the street. The tiredness is so deep that I have fallen asleep at very embarrassing times. From the moment I wake up, despite coffee, yerba mate and even those horrible 5 hour energy drinks, I can fall asleep standing up, walking, at the urinal, in meetings, at my desk, on the phone, on the baseball field and other places…did I mention AT THE URINAL?! 
• I cannot sink a free-throw to save my life – Blaming the prednisone…for now.

Not Exactly How I Wanted To Be “Published”…

2010 was the year from hell for me and my brood. If you know me, this is not exactly revelatory. I have tweeted about it, I have whined here about it and I have slammed it against my Facebook wall. I have talked on the phone with many of you and you have all patiently listened. I could never ask for more support than I had in all of 2010.

I am suffering from a rare and painful autoimmune disease called pyoderma gangrenosum. As is always the case, I need to forewarn you about looking that condition up first without knowing that it is a painfully ugly disease. The images can be graphic and uncomfortable. So, there it is. This disease has taken over my life and I have written about it before. In 2010, I was in the midst of what would turn out to be a 14 month flareup of this condition. What that means is that during that time, I remained a prisoner to my leg. My day-to-day existence was filled with wound care, pain management and a whole lot of drugs. There is no one drug that works for everyone suffering from this condition, but whatever ends up working for an individual inevitably entails a lot of trial and error with heavy doses of immunosupressants, steroids and/or a slew of topical treatments. All of these are done with a 0% level of confidence in their effectiveness. Of course, there are myriad alternative approaches that can be worth considering too. Each patient of PG needs to weigh, for themselves, the risks vs benefits of these modalities.

In 2010, I was hospitalized twice for a total of about 3 weeks. The first time was for a “fever of unknown origin.” Clearly, the immunosupressants were doing their job and left me open for some sort of infectious process. But after the most comprehensive series of tests that included everything from colonoscopy, endoscopy, dozens of blood tests for exceedingly rare diseases (ie “desert fungus!”), CT scans. ultrasounds, a PET scan, a spinal tap and, most painfully, a bone marrow biopsy. All tests results were inconclusive and I was released from the hospital with vigilant follow ups. What is interesting to note is that none of these tests were conducted to get a deeper understanding of my PG. These were all done as a way to get to the bottom of the (perceived) crisis, my fevers and anomalous liver enzyme results.

The second hospitalization was related to my PG almost exclusively. I walked (hobbled) into the doctor’s office with pain of unbelievable proportions and swelling of my affected leg that scared even me. She immediately called for a wheelchair and for me to be admitted. During that time, I was HEAVILY medicated with IV and oral pain killers that included percocets, fentanyl patches and even morphine. I was also hit hard with steroids. I believe they refer to it as pulse steroids. 3 days of a continuous barrage of “very very very very high dose of steroids”  (That is how the staff at the hospital referred to it). Most of my stay there is just a blur in my brain today.

So, we have established that 2010 sucked. No epiphanies with that. But now, especially with the clarity that only hindsight can bring, I need to remind myself that it wasn’t that bad. Afterall, I have met some amazingly inspiring people on the PG Facebook group. We all share ideas and resources and have established a small but essential support network. Here we can talk about the gross, we can discuss the pain and know that people “get it” and we can be comfortable that no one will proselytize their latest and greatest treatment discovery. We are all on different paths with access to different modalities and professional resources. So, instead of being defensive when someone offers up a “this-is-what-worked-for-me,” I can review that with a open mind and a critical eye.

But, one of the unexpected benefits that came out of 2010, was the motivation of some very important people in my life (motivation = nagging) to stop hiding and let people know and “raise awareness” to overuse that term about PG. I began putting myself out there on both Twitter and Facebook. One day, as the story goes, I received a tweet from the Journal of Dermatological Nursing. The editor requested that I write an article for their “Patient Perspective” section of their upcoming journal. I was stunned beyond belief. Here was my chance to speak publicly about PG and to a captive audience of medical professionals. I happily obliged.

Through the haze of pain meds and steroids, I was able to patch together some words that I would hope could communicate the real impact of this disease on a patient’s life. With  fair warning, I want to link to that article here and tell you that it includes a couple of graphic images of MY leg. It is gross.You have been warned.

Pyoderma Gangrenosum Article

In 3 minutes, I need to wake up the clan and get them (or at least one of them) ready for school. I will end this post here. But first, as always, I need to thank all my family and real world friends for being there and putting up with me and frankly for nursing me back to “health.” But it is incredibly important to me to mention all the amazing friendships I have had with my FB and Twitter friends. I defend, with intensity, the value of social networking. I cherish each and every one of my friends that have reached out to me during this past year.

There is no way to know when the next flareup will be, but I know that I will have a solid support system in place when it does.

This Has Changed The Very Definition of Me

Pyoderma Gangrenosum has changed me. It has changed the physical landscape of my body. It has changed the way I think. It has changed the way I sleep, eat, work, exercise, parent, live.The insidious nature of the disease, wound and pain management and even the very treatments designed, with hope, to suppress the immune response all conspire to change me. I no longer assume that I will catch a break as the 6 year mark approaches in November and the 1 year mark of this flareup approaches in December. I assume that this is what I will live with. I can no longer call myself a runner. I can no longer be a parenting partner as I spend most of my time trying to stay out of the way. I can no longer be a role model to my children as they have had to pick dad off the floor too many times. I can no longer be brave, or at least put on a brave face, as my family has heard me scream and cry in pain way too many times.

My words to describe myself now include “I used to be” and “I remember” and “before PG I was.”  I USED to be skinny or at least my weight USED to be completely in my control. I USED to run or at least my random runs USED to be solely guided by my will power and determination. I USED to have a positive outlook in life or at least I USED to be able to kick myself if I fell into negative thinking.  In my best Gene Simmons voice: “Before PG, I used to be….me”

I am NOT the disease. But it has become a part of me.  I cannot ignore it. There is no respite. There are no moments that I forget it is there. I am sorry that I can’t simply forget the pain when I am spending time with my kids. In fact, it is when I am with them that I most reminded of this condition.

I fear the night. When everyone else is sound asleep and my brain wants to join them, my body won’t let it. I am viscerally afraid to shut my eyes because that is when I might accidentally stretch or bump my leg and I wake up in pain again.  I am afraid to lie down because when I wake up for a midnight pee (by way of a midnight raid of the fridge), my leg drops below my heart and is set on fire. NO PAIN KILLER has ever made that pain easier. I fear the morning. In the morning, it is time to pretend again. Time to play house. Time to play daddy. Time to play coworker. Time to play nice when all I want to do is to show people what I am dealing with and say f*ck you!

Open house at Boston Tango Academy (I admit that is weird) with free lessons coming up…I can’t go. Social event with work a couple of night ago…I didn’t go.  My son earning his stripe in karate…I didn’t see it. Soccer practice…I didn’t go.  A year’s membership to the Brattle Theater and I have not gone once to see a movie. School-Parent events at the kids’ school and I do not attend. Family apple picking canceled. Weekends on Cape Cod…I have not been once this summer. Sneaking my family into the neighbor’s pool…not once. Replace the broken disposal…called my brother in law.  A year’s membership to the gym…I went 3 times.  Smelly yoga…5 times.  Mowed the lawn…not once this year. Planted a garden…nope.  Made wine…no.

Pyoderma Gangrenosum may not define me, but it certainly has changed who I am.

“And how was your weekend?”

(note: This post is just a midnight pain-induced rant. It is mostly unedited, but if I stop to think, another year will go by without a post)

Go ahead and ask me that question. When I get to work tomorrow, I am sure I will be asked that at least 10 times. In nearly all of the cases I will do whatever I can to sidestep it and answer with a noncommittal “great…how about yours?” With the attention safely off me, we are then left to discuss the entire weekend from their perspective. Let’s see…it probably goes something like this. “Well, on Saturday I took the kids to soccer, baseball, swimming, tennis, etc. On Sunday, we all worked out in the yard. Boy, my grass goes fast. My back is stiff. I guess I am not as young as I used to be” I smile while silently begging for a still back.

But living with Pyoderma Gangrenosum (warning: GRAPHIC IMAGES) changes everything. Here is a rundown of my weekend. It is actually a rundown of my entire week…and to complete the melodrama, it actually has been the status quo for months.

Friday night, I slept on the couch. I slept in a seated position with my leg resting on the coffee table. The word sleep is really ironic in this context as what I did had very little to do with sleep. I sat in that position, with my body spasming in pain. Wrapped around my lower left leg are three 8X10 surgical dressings and approximately 10 feet of cloth tape all wrapped in a blue underpad. I keep a towel on the floor as none of these items can stop my wounds from soaking through the dressings.

During the night, when I drop my leg to the ground for the first time in hours, it feels like someone has taken a gallon of gasoline, poured it on my leg and set a match to it. The blood that flows back into the leg feels as if it were made of acid or microscopic shards of molten glass. During this blast of pain, I cannot even move from my position and can’t even consider walking for the next 10 minutes or so as the pain burns off (and if I were blind, I would say “literally burn off” because that is precisely the experience). My family has witnessed me stuck in this position so many times. Imagine having to explain to a 7 year old why daddy is crying and won’t get off the floor.

If the nights are tortuous, you would think that morning would bring relief. Wrong. Morning just brings more complications and pain. I have to undress my leg and no matter which of the fancy dressings I use, I spend at least 30 minutes writhing in pain because something will inevitably stick to my leg. I then hop in the shower where there is still no relief. Shower time is as unrewarding and downright frightful as bedtime. The moments we all take for granted; moments where for a brief few minutes or hours we can escape from the world, are moments I fear. These are moments where I am in my head and in my pain. I am cursing the fickle gods, the stars, the fates, my genetics, my diet for conspiring against me.

Redressing the leg is a whole new set of complications and logistical hurdles. I almost always require more hands than I have. It will require prepping the dressing with whatever concoctions the doctors and my own research are willing to try. If I am going to work that morning and know that I will not have access to my wound care equipment, then I have to be VERY careful to put myself together because it has to last the entire day. By dressing my wound so tightly I know in my heart that I am actually making everything worse. I know the dressings will compress, shift, torque on my wound and will cause excruciating pain. I know that by the end of the day, it will physically have changed the landscape of my leg. But I have no choice.

But whether I sleep or not is irrelevant. My Baby Goats need to go to soccer, need to go to the beach, need to play. While they do this, their dad is left home…still on the couch. “Daddy is sorry kids, mommy will take pictures and send them to me of your game. I think I am slowly healing and will be able to take you to karate next month.” This has been going on for 10 months now with no break. I have had this disease for SIX YEARS!

See Spot…and Run!

***WARNING: Graphic Medical Content

As many of you already know, I have battled a rare, painful condition called Pyoderma Gangrenosum for a few years now.  Please do not Google Image that without fair warning; It is ugly and gross. This disease is hard to explain to people as they inevitably think it is “just a skin problem.” In fact, explaining how debilitating this condition is to the insurance company has been a challenge. They simply do not get how immobilizing this disease can be.

At its simplest level, PG is an ulcerative condition of the skin of unknown origin. It is sometimes associated with other systemic diseases. Whatever the case, it sucks and it hurts and it is very difficult to care for, let alone treat.

I have been managing the disease quite successfully over the last 2 years with a drug called Remicade. This is a very intense treatment that essentially suppresses my immune system (an over-eager immune system is thought to be the cause of PG). I have been going for treatments every six weeks to Tufts New England Medical Center. Basically, I am getting the drug delivered into my system via an IV infusion. It takes a few hours to get it into me. Other than a bottomed-out immune system and some lethargy, the immediate side effects are minimal.

My life has been moving along fine with only occasional flareups that seem to suppress relatively quickly.

Well, that changed 48 hours ago. I am now in the throes of an intense flareup that is causing a lot of agony as well as anguish. It is in a very awkward spot which makes it almost impossible for me to bend my body. I hate this. I definitely did not need to deal with this now…especially the day after Christmas. I still have a bike to assemble and we are all still tripping on remnants of yesterday. No matter how great the pain is, I still need to be a member of the family. My 8 year old has already asked me to play Blokus OR Stare OR Sequence OR Pictureka OR Zingo OR Racko OR…well, you get the message.

There are reasons to think that this may not evolve into the HUGE ulcerations I had on each leg, I cannot help but worry. I don’t even know what the point of this post is, so I am just going to end it. Thanks for listening.

Feeling up the Pages

Did that get your attention?

Whenever I show my Kindle to people, I inevitably get a few “oohs” and “aaahs” as they flip the unit around in their hands and try to use it as if it were a laptop or a touchscreen smartphone. They may bemoan the fact that there is no backlight which is EXACTLY what makes the Kindle so easy on the eyes; it doesn’t glow. They flip it around in their hands, lose my page in about 5 books and then hand it back to me with a conclusive “I prefer the feel of real paper.” Oh, OK. That totally sums it up. Thank you.

Here is what I have said in the past and want another chance to say it again. To the people who prefer the feel of real paper (as if I prefer the feel of plastic and electronics) I ask a simple question: Do you enjoy the sound of live music? Do you get excited when U2 is coming to your town or your local symphony orchestra will include a Mahler repertoire that you have been dying to hear? If they have answered yes to this question, then I simply ask them if this love of live music stops them in any way from purchasing a CD or an MP3 from ITunes. If it hasn’t, then why eschew a digital book because you prefer real paper?

Don’t get me wrong, I know the analogy is not precise. I understand that the commitment to attend a concert is typically greater than purchasing a novel. I own 300 CDs (I have a feeling I will have to explain what a CD is one day soon) and yet I have not seen 300 concerts in my life. A concert is much for of an event than picking a book off a shelf. Not to mention the cost differential. It costs about the same to purchase a digital book vs a “real” book but it usually costs substantially more to attend a concert than it does to order a song off Itunes.

But the point stays the same; The fact that I TOO prefer the feel of a paper book (as well as attending live concerts) should not prevent me from opportunities of the digital age. What are those advantages?

A. I currently have about 30 books on my Kindle and a subscription to the New Yorker (shamefully unread) all taking up the same physical space as a single paperback novel.
B. I will always be able to select a book based on mood. How many times have you had a book in your hand and thought to yourself that this was not the book you were “in the mood for?”
C. I can be completely spontaneous. If I want a book, I connect to the Kindle’s whispernet and shop Amazon.com and download a book in about 60 seconds. This is perfect if I am at the airport and pass a Borders and something catches my eye.
D. I own 1000 books and 95% of them I will never open again. Not EVERY book needs to exist beyond the timeframe in which I am reading them. Of course, there are many sentimental books that I want to have a hard copy of (ie collectibles, gifts, sentimental books, etc), but those are far and few between. I just finished a trashy corporate espionage novel. Why would I want to keep a copy of that book around?
E. I really can’t say which is “greener;” a Kindle or a paperback, but I can confidently state that a Kindle uses less paper…lol.
F. As a side benefit, I can easily use the Kindle on the treadmill at the gym. I can adjust the font size and not have to worry about how to hold the book or magazine open. This has helped me immensely with my motivation to run.

So there it is. My justification for welcoming and embracing the digital book age. If this means that publishing houses go out of business (not sure that it does), then so be it. Blacksmiths are also out of business too.

What a Difference a Year Makes…Not So Much

One year ago today, at 9:45AM, my father died. If you know me, then you know I don’t have patience for bathing my father’s death in euphemisms. I will never say “he passed away,” “moved on,” “is now with God,” “is at rest,” or “is in a better place.” He is dead. He is dead because one year ago, a shitty disease killed him. My mind will never make peace with that fact…at least I hope it never does. I have nothing to say here but I did want to acknowledge the anniversary. I was honored to have written his eulogy and that is all I have to offer you today.

Hello, as I am sure you all know, I am Donato Leone Jr. I am here to say a few words about my father, Donato Leone Sr. I am not going to talk about how cute my father’s accent was or how disappointed he was with me when he learned I was a lefty. I promise I wont embarrass him by mentioning that he was so resourceful he would cut some scrap pieces of rug into the shape of a foot and stick it in his boot for extra cushioning when his boots would start to break down. I do not have stories about the day he bought me a bike in the second grade, my best Christmas ever in the fourth grade or even the first, and last time, he brought me fishing in the fifth grade. That is not how I remember my dad. Please allow me just five minutes of your time to share just a few words with you.

Today, I smile

Today, I smile because today he is free. He is free from the relentlessly-tightening grip of the shackles that bound him. He is free from the ever-increasing weight of those chains handed to him just 13 short months ago….a million yesterdays ago. Today, I smile because he no longer struggles for each precious breath. He no longer marches, unwillingly to the merciless drumbeat of ALS. Today, I smile because I know my father…Dona, Papa, has left us in peace, with his dignity intact and surrounded by those who love him. Today I smile because we can now go on to the business of remembering the good moments and forgetting about the horrors of the last 13 months. I want to share with you just one such moment: I watched him get out of the car as I watched him do it a million times before. The small window on the second floor was one of the few windows overlooking the driveway. I watched the door open on the green Pontiac Tempest slowly open. Even more slowly, my dad would swing his legs out and there he remained. His hands resting on both his knees. Staring ahead of him; staring beyond the house just a few feet away. Staring beyond Brighton. Perhaps he was looking back in time; back to a time that was both easier and more difficult. Here, in America, he had an opportunity, a future, a chance to create the life that he dreamed. He also had his beautiful bride. In Italy, he had everything else. His connections to his past, his family, his support system, his language and his culture. The view of the top of his head never changed over the years, except for the graying and the receding. His hair was made even grayer by the ever-present cement dust he brought home from the construction sites; the only remnant of his job that he brought home with him. I remember he could be patted like a dirty pillow and dust would envelope him; never diminishing no matter how many times you hit. It was like the dust was coming from inside him. I would see my dad lift himself with a single groan; using his hands to unbend his knees. The years passed and that pause would get longer and the groan a little louder. You would think the first stop would be the kitchen table for dinner. But not with my dad. He would immediately go into the basement where he had the courtesy to install a shower a few years before. That way, he could wash off the residue of the construction site. When he came up, he almost always wore a clean pair of Dickies and a sleeveless tanktop tshirt. He still had dust on his body, but this time it was the clean smell of baby powder. There is no way to forget that smell because he wore it every day of his life. It was the smell of clean…talc dust replacing cement dust. That is how I remember my father. He was not a friend; he was a father. He was a father who got up at 4AM everyday; drank instant coffee, went to work building walls, came home exhausted, ignored blackened fingernails wrapped in electrical tape, watched candlepin bowling and fell asleep at the kitchen table. Little did he know that with those same calloused hands that he used to lay bricks, he was also paving the way for his family to live an easier life in America. When I would check in on my dad over the last 13 months, and ask the stupidest question ever: “How are you today, Papa?”, he would look at me, smile and give me the thumps up. This never changed until a couple of weeks ago, when the disease made it impossible to move his muscles into a smile or even lift his thumb. So today I smile…because I know you would have. Today, I smile because I have no choice. Donato Leone Sr…I miss you already.

I admit that I cannot stop crying right now.

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Originally uploaded by danleone.

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Originally uploaded by danleone.

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Originally uploaded by danleone.

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Originally uploaded by danleone.

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Originally uploaded by danleone.

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Originally uploaded by danleone.

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Originally uploaded by danleone.

It Begins with the grapes

Thursday afternoon, I drove to Woburn Massachusetts to pick up my 10
cases of Barbera grapes from Beer-Wine Hobby. I don’t really know how
the prices of grapes compare to picking them straight from the produce
markets in Chelsea, but I can say that it is a little less daunting.
Haggling with burly men dangling their unlit, over-chewed and
saliva-soaked nubs of cigars from their mouths is not my idea of a
happy Saturday. I would rather pay a couple of dollars more, drive
another 30 minutes and deal with the pleasant-ish women at the
store…thereby dodging the stray bullets at the produce markets. I
have already broken from tradition by doing that.

When I ordered those grapes a couple of weeks ago, the woman suggested
I purchase 25-30 cases of grapes, just as I was filling out the order
form. I had told her what I had for barrels at home and what my dad
used to produce and that was her recommendation. I reminded her that I
was a mortal and at $27/case, 10 cases would be sufficient, thank you
very much. To spend $600 on an experiment is not enticing.

I had planned on leaving work a little earlier than normal to give
myself enough time to make it up there, pick up the grapes, purchase
some supplies and ingredients, drive home, unload and make it to my
school parent meeting at 5:30. Needless to say, after years of driving
in Boston, I knew that was not likely to happen. When I finally pulled
into the parking lot, it was already 4:30 and I knew that the grapes
were not physically at the store and I would need to drive to another
location to pick them up. So, I skipped the browsing around the store
and did not buy any of the items I was going to need before I crush
the grapes. I drove to the shipping dock and handed the “gentleman” my
handwritten ticket allowing me to pick up the grapes. The first thing
he noticed is that I had a pink shoelace on my shoe from the week
before when my job was celebrating its relationship with the Komen
organization to cure breast cancer. I guess rule number one should be:
never wear pink shoelaces when trying to pick up grapes from a
shipping dock. Well, at least the forklift men had a good laugh at my
fashion faux pas. I loaded up my car with the ten cases while
pretending that the one inch splinter from the grape boxes did not
hurt; fearing further taunting. I pulled away from the dock and then
went a block up the road, dropped the tailgate and took a picture of
the grapes. A mix of emotions flooded over me. In one breath I was
every excited. The prospect of making at least one attempt to
perpetuate a cultural tradition was overwhelming as well as the
research value that this will provide as I write my book. In the next
breath, I was sad; sad that my dad was not here to be a part of it and
sad that it was only ten cases. When I took the picture, I noticed how
sparse it looked. I can remember riding home from the produce markets
with my dad carrying grapes on my lap because we didn’t have enough
room to put all the cases in his truck. I was also a little scared. I
knew that I would be making this wine all alone without the reassuring
verbal “hand-slaps” from my dad if I did something wrong.

For the entire drive home, the familiar bouquet of grapes filled the
car and I even got a knowing glance and a thumbs up from an old man in
his pickup as we waited at a red light.

Stay tuned for more updates!

Posted via email from Dan’s posterous

Roughly-Hewn Words

Sitting here and thinking about my writing before I get all wrapped up in work. Last night was spent transferring my scenes from various sources into yWriter. I have used yWriter in the past and had dismissed it due to the fact that I might use 3 or 4 different computers in the course of my week and i needed portability. This is why I have been leaning towards Google Docs. I can use GD anywhere I have access to the internet. But recently, my computer choices have been narrowed down. I basically work on one laptop and possibly my home PC. Best of all, yWriter is freeware.

Basically, yWriter works best in the basic unit of the scene. Up until now, I was working chapter by chapter. So, in order to import my writing into yWriter, I had to read my story and break it out into scenes. I worked a lot on that last night. But as I was reading, a painful realization came over me: I really hate about 40% of my words. This isn’t a phishing expedition; I am not looking for people to tell me they like what I write. This is just a sincere assessment of my writing. Don’t get me wrong, I REALLY like many of the scenes (interestingly, those scenes are the ones that have been edited many times especially following the critiques by my Grub Street writer’s group, and therefore I still have hope). But the 40% that I hated, I DESPISED! They were poorly-structured, self-serving and ultimately irrelevant.

Then I began looking for a metaphor in my real life and I thought about my father. Here was a man that could do anything in the house. It was not unusual to come home from school and see him starting a new project that would normally take three or four men to accomplish. He was truly a jack of all trades and master of none, to perpetuate the cliche. Whether he was working on plumbing, electricity, carpentry or the garden, he never doubted his ability to get the job done and it always got done. But the reality was, his handiwork was always less than perfect. He took his resourcefulness to an extreme. Instead of buying a new can of paint, he would mix together near empty cans until everything in the house became various shades of brown. He never bought clean lumber, so the garden shed he built was patched together with wood paneling leftover from refinishing my bedroom, to 4X8′s split to make 2@2X4′s for the wall studs. He unbent rusty nails and painted the basement floor with wall paint. He used coat hangers to hang a drop ceiling and removed one side off an old shopping car to make a grill rack for the BBQ pit.

But, the garden shed has stood there for 40 years without a leak and we have been grilling on the improvised grate for 25 years. To this day, we see his handiwork. Anyone could have done it better, but it would not look like my dad’s. I see him in everything I touch in the house.

He simply got it done. He wasn’t proud or not proud. He just knew that it had to get done. He didn’t beat himself up when corners did not meet at right angles. He worked around it. So, as I became really discouraged last night that “all” I have created are corners that don’t meet, I stopped to think of my dad. He got it done and so can I.

Thanks for listening.

Posted via email from Dan’s posterous

What happens here?

Testing posterous and I have no idea what it does.

Posted via email from Dan’s posterous

State of the Novel

Hello beautiful blog-o-verse. It has been a while since I have even looked at my blog; let alone post anything. I blame it on the micro-blogging sites of Facebook and Twitter. These two venues have allowed for much greater “lifestreaming” as well as to reach a larger audience. The reality is, that a blog is a very difficult beast to maintain and promote. Whereas people can accidentally reach my words on Twitter and FB, the blog is someplace that people have to intentionally go. They need to put me in their blog roll or their feed reader. Whatever the case, I do not get a ton of hits on this site. Not surprisingly. The jury is still out on which of the two social media sites I prefer. I find it hard, if not pointless, to use  both. I can only assume that I will find a more segmented approach to these sites. Facebook for more light-hearted Danisms. Twitter, I can use for more of the “personal branding” (YUCK! Do I hate that term!) as a writer interested in the Italian-American experience. There are other parts of my life and I have yet to decide where they should live.

The blog is for posting my writing or longer ramblings. But, I also want to use sites like Red Room, where I can highlight any writing and share them with other writers and maybe seek relevant critiquing.

Speaking of writing, I wanted to give myself a State of the Writing update and share it with you. So here it goes.

At the surprising urgings of my Creative Writing professor, Jim Murphy of Boston College, I began writing a work of fiction about the section of Newton Massachusetts in which I was born, affectionately called The Lake. The Lake is a predominately Italian neighborhood and has maintained this quiet state for decades. There are stories to be told about The Lake and I wanted to write one of them. The working title is The Son of His Father (to this day, I have never Googled the title for fear I couldn’t use it).

The Son of His Father is a story about a man of Italian-American heritage who spent much of his life running away from that heritage. When confronted with the death of his father, my protagonist returns home. He is forced to face and ultimately reconcile with his roots. I will be honest with you, dear reader, this is the first time EVER that I have been able to explain the story in just two sentences. I’ve always said that when I am able to do it in one sentence, the book will be available for public consumption.

I am no different than most writers. I enjoy the process of research more than I do the process of writing. I am the master of playing the “research card” whenever I don’t feel like writing. The good thing is that I truly have a lot of research to do. The Lake is filled with compelling stories the span the spectrum of the human drama. The Lake is also filled with beautiful people, many of whom I call friends. Though I am absolutely writing a work of fiction and am taking liberties with some of the local details, I also do not want to lose site of the essence of this place. The concept of place is extremely important to my writing. I have always considered both “place” and “process” to be what I bring to the writing table. Not to say that these things are more important than plot or characterizations by I am not as tuned in to these.

For research, I have been spending a lot of time just hanging out in The Lake and re-familiarizing myself with the area. I admit that I have a hard time approaching people and asking them questions, but I am VERY good at observing and I take advantage of that. More than one person has seen me wandering the streets trying to be discrete as I take photos that I believe are relevant. On a side note, I am also fascinated with images of the “Madonnas on the half shell” on people’s lawns. Any religious icons used as part of a home’s landscape just intrigues me so I am definitely going to try to snap a few pictures of those when I get the chance. I also carry with me a voice recorder. This is for planned and spontaneous interviews as well as capturing thoughts when I cannot get to a pen and paper easily.

My greatest source for information about The Lake has been a surprising find. His name is Eddie and he is probably 26 years old. He comes from a very prominent family in The Lake and his grandfather was the man who got things done in the neighborhood. Whether someone needed a street light fixed or to gather some volunteers to donate blood to a particular patient in the hospital (my mom was one of those patients), “Fat” was your man. Eddie is a wealth of knowledge, stories and a palpable pride in his heritage and his neighborhood. This pride is contagious. We have spent hours sitting at Maria di Napoli Ristorante with just an espresso or an appetito. I recorded every word and let him guide the conversation. I have replayed the tapes a hundred times and each time I hear something new. Stories of love for family and community and culture. I am eternally grateful to have met Eddie on Facebook.

Facebook, despite it’s flaws, has been a tremendous asset to my writing and I cherish the connections to writers, to The Lake, to other Italian Americans, to long missing friends and family.

Additionally, I use a couple pieces of software that I would like to share with you. The first indispensable application is Evernote. If it is part of your job to remember anything, ever, then you need to be using Evernote. I agree that there are a bajillion substitutes, but until I am able to use those applications across multiple computers, networked or not, and use it on the internet and inline with my browsing and now on my iphone, then I won’t even consider them. I have one workbook for work and personal, but many tags and sub-tags to organize my writing (ie, @writing, @TSOHF_research, @TSOHF_contacts, @TSOHF_history, @TSOHF_ideas, etc, where TSOHF = The Son of His Father and is used to distinguish it from other projects I am interested in pursuing…someday).

I currently also use a mind mapping website called mind42.com and am searching for alternatives. But, I REALLY cannot see my way out of a project without mind-mapping and some form of low or high-tech solution is always close at hand.

The entire project, with copious backups are housed on Google Docs. I may be revisiting that decision soon.

For low-tech solutions, I have been using the Junior sized Circa binder from Levenger. I have not jumped on the Moleskine bandwagon, but I do own a couple. I just need the flexibility of the Circa system, but even that is far from perfect. Also, from Levenger, I am in love with their Concept Pads, I believe they are called. The other item I cannot seem to live without is my whiteboard. On this board is just a couple of columns: “New Chapters” and “Edit Chapters” I either handwrite or use sticky notes to remind me where I am in the process. Some days, I feel like creating from scratch and will put the chapter numbers in the first column. When all I want to do is edit existing chapters, I use the second column to tell me which one I am actively working on.

For any burst of writing, I have to use my laptop with my Levenger (of course) Laplander lap desk on the living room couch. I have become quite good at tuning out distractions and if I am don’t, I can always blame the noise on any lack of productivity.

Wine and winemaking will make an appearance in my novel and this year will be my first ever attempt at making wine for real. I will be documenting that process for either this or future projects.

2 years ago, before having to deal with the mortality of my own father, if you asked me what page I was on, I would have said somewhere around page 80. Two years later, I am probably on page 100. I openly admit that these last two years have been extraordinarily difficult for me to deal with. I feel like I am on a tight rope and on one side of me is greatness and the ability to share a story that I feel is important to tell and on the other side, the image of a 45 year old man, lying in the corner in the fetal position. I am scared to move forward, but I am not sure that I have a choice.

Thank you for listening to this ramble. I am not going to edit or rethink my words. Please forgive the randomness of this post. It is important for me to take stock of the process and “put it out there” for my friends to read. Your opinions and support mean the world to me.

Dan

What I know TODAY about making wine…

1. There is a fine line between grapes rotting and wine.

2. There is a fine line between the science of wine-making and the art of wine-making.

3. There is a fine line between assisting someone with making wine and truly understanding the wine-making process.

4. There is a fine line between traditions of the past and the path to the future.

5. For 35 years, my father danced this dance, while I usually helped.

6. This year, I will try to continue the tradition.

Stay tuned for updates!

Steeped in Tradition

(Me drinking mate. My sister next to me and my grandfather watching)

There is a thread that weaves its way through our days and links us to our past and our past’s pasts. It can be as ethereal as a spider’s web and yet when we stop to take note, it can completely envelope us. Over the last few months, and perhaps few years, I have felt like I walked face-first into that web. It seems every thought connects me to my history which then blooms into quiet reflection and, in the case of my book, moves me into action. I crave the research and love the discovery. Hopefully, I will connect all those dots into a coherent chain of words that other people would love to read.

In the meantime, I have stopped to consider many of the traditions and rituals of my life; once again, with the thought of how that connects me to my past. Many of these things I take for granted. As of late, I no longer want to take those for granted. With my connections to my future firmly established with my three baby goats, I want to be aware of the traditions that pass through me into the lives of my children.

It is funny that I mention the word rituals as I consider myself to be the absolute antithesis of ritualistic. I have written before that I practically seek a non-ritualistic life. But that applies more to the mundane. I don’t order the same food in a restaurant, I don’t wake up at the same time, I don’t “have” to run, write or sleep 8 hours in order for me to feel consistency. Additionally, I have no religion to turn to for maintaining traditions whose reasons are long since forgotten.

So, I don’t consistently put my left shoe on before my right or towel dry my hair before my body, but I have begun looking at the more profound and sacred moments in my life. I am trying to stop and reflect on them and even am willing to discard them if they no longer serve me. But mostly, I meditate on them and have found a corner in my little brain to keep them.

One example, I would like to share with you. It may appear trivial, but it is so “steeped” in tradition, that I just had to write about it.

My mom is from Uruguay, South America. This surprises some people as I always talk about and seem to connect with my Italian side. To some extent, this is true. My mom and dad were married for a very short time before moving to America with the proverbial five dollars in their pocket. Since they lived in The Lake, a predomintately Italian neighborhood, outside of Boston, she was forced to learn Italian rather quickly…while at the same time, learn English. She was also still a teenager without any family in this country so her connections to her culture were severely severed.

We did manage to go a few times to Uruguay as a family when I was growing up. I believe I was around 14 years old the last time I went, so I really do not remember a lot of it. But there are few memories that stick out in my head. One memory that shines is how everyone I knew drank a hearty tea, called Yerba Mate (yeerba matay). It is easy enough to go to Google and figure out exactly what it is. But, in Uruguay, everyone from old to young would drink this tea. You would see bus drivers sipping it and businessmen walking down the street with thermoses under their arms This was not your ordinary tea where you plop a teabag of Liptons into a cup of hot water. No, this was a true ritual, more closely aligned with the Japanese tea ceremony than a simple cup of tea.

My grandfather (abuelito) was every definition of a true gaucho and I remember him sipping the tea using a metal straw called a bombilla. The “cup” is typically a hollowed-out and cured gourd. These can get very fancy and decorative. You can see my collection here:

http://farm3.static.flickr.com/2048/1986107844_11a705cdcf_b.jpg

The tea is a loose, green tea with a very earthy aroma and a powerful, grassy flavor. Sincerely, it is not “everyone’s cup of tea.” If every square foot of my grandfather’s house didn’t smell like this tea, I bet I would hate it. The memories of that aroma is what I crave every day. The true beauty of this tea is that it really is meant to be drunk communally. Once the person who poured the mate is done sipping all the water out of the gourd, it is his responsibility to fill it again and pass it to the next person. That person will finish the water, pass it to the host who will refill it and pass it down again to the next drinker. I fully understand if you are wincing at the thought of everyone sipping out of the same straw. In my opinion though, this is what makes mate such a special bonding ritual amongst friends. My reality is that there is no one in this house, or anyone I know, that actually enjoys mate except for me, so I just drink it alone. My son will occasionally have some, but that is because he likes to put forty teaspoons of sugar on anything.

That is why when I wake up early enough (this doesn’t happen EVERY day), usually at four, I will boil a pot of water and make myself some mate. The mate gourd I typically use belonged to my grandfather. It is probably fifty years old or more. It rests in a handmade leather holder, stamped with the words URUGUAY on it.

Here is a closeup:

http://farm3.static.flickr.com/2036/1986147464_cec172697e_b.jpg

For the next hour, I sit and read, watch the news, write or think about running and I refill the gourd until the thermos is empty. Every time the I raise it to my mouth, the aroma hits me first and I am transported back to Uruguay, sitting around the fireplace, playing chess with my cousins as my grandfather fills the gourd again.

He is no longer alive and I have no idea if the younger generation in Uruguay still drink the stuff or if it is just a relic of days long over, like Moxie and snuff. But I know I need this tea coursing through my veins to bridge the gap between cultures.

Do YOU have rituals or traditions, that may even seem odd, but you will not let go of?

I am honored that you read my words.

Never write and tell….

I am fully aware that the worse thing you can do whenever you:

a. plan on writing a book
b. beginning a diet
c. read a book per week
d. train for a marathon
e. etc

is to tell people what you are planning. In fact, whenever I read about these plans from various social networking sites, I immediately roll my eyes. Clearly, they are setting themselves for an embarrassing disappointment. I am not so stupid that I don’t know that we are just primed for failure…and publicly at that. But, there are times when “putting yourself out there” is all you can.

This is precisely why I posted today about my writing project. Again, I know that EVERYONE in the world is writing a book and most of just come across sounding like this:

http://www.youtube.com/watch?v=cuUBgkdFMqs

But, I am not the type of person that can operate in a bubble. I need to know that I am accountable to others. I do not think I would write a word if it wasn’t for the fact that others are expecting me to give an update.

So, I have put myself out there and said way too much. But, at this age, I am too old to be subtle so I purposefully and with a little naivete I put my heart of my sleeve and hope for the best. I sometimes feel like Bear Grylls is going to make a pit stop at my house and begin chewing on my raw, still-beating heart because “it is full of chewy protein and it is on his sleeve, after all.” In the big picture, it is a small price to pay for the wonderful support that I have come to crave and dearly miss from all of you.

Thank ALL of my readers. AoMR!

Writing – Batteries Re-Recharged…again!

Because of the motivation of important people in my life, my writing has been recharged! I am so excited about recent developments and want to share with you some of what is happening.

As you know, I have been working on a writing project that is set, at least partially, in a village of Newton MA called The Lake. It is a beautiful section of city that is, or at least was, predominately, Italian. I have been working on this project on and off for the last couple of years. With my dad’s illness and subsequent death, I essentially dropped any writing and really felt like I was never going to pick it up again. Though the story is not a true memoir, it was based in reality and it simply was too painful to write about now that my dad was dead. The story includes the death of the main character’s father.

But with the magic and the motivation and guidance of a person that is very important to me, I have picked up the writing again. For the first time with this project, I have begun to actively do research. I am no longer writing in a vacuum depending on my faulty memory. I friended a person, a local legend rather, on Facebook, from The Lake and we have met in a local Italian restaurant , complete with Pavarotti in the background and talk all about the neighborhood. There isn’t a person he doesn’t know. I have already recorded hours of conversations and begun slowly transcribing it. He has introduced me to some really colorful local people and we are setting up even more meetings. I will share with you soon some of the more interesting stories.

I am documenting and recording everything I can and every person I meet. Even my mom has a fascinating story of the neighborhood that I knew nothing about. It is time to put meat on the bones of this project and we will see what comes from it.

At this point, I just want all of you to realize how excited I am to be writing and how grateful I am for the support.

That is all for now.

Desperate Questions

When my father was diagnosed with ALS, it would have been tempting to run off to WebMD.com or a more questionable site to figure out what ALS was. But, I have never been a fan of this Consumer Reports style of obtaining medical information.

I did do enough research to know that it was a horrific diagnosis. The neurologist referred us to Dr Russel at the Lahey Clinic. He works with ALS patients and can help decide on the best course of action for my dad.

At this point, the only symptoms my father was presenting were some slurred speech and muscle twitches (fasciculations). We originally thought he had suffered a small stroke and we even sat around the living room and laughed as we watched his calves twitch, like they were filled with a bag of worms.

But we had questions. It simply had not dawned on us that this disease was so linear and relentless. Though the left part of our brain “got” the fact that this was a death sentence, we simply could not process it. So, we prepared ourselves for the visit. We held clandestine whisper-meetings at the kitchen table while my dad watched TV as if he was not to know. As if he didn’t know. Meanwhile, he was probably the one that “got it” faster and more clearly than any of us. We sat around the table and came up with a list of questions to ask the doctor. We are notorious for prostrating ourselves at the altar of the Church of Modern Medicine. We sit intently, listening to the sermons and never daring to ask a question. Then, as might be typical in a real church, we go back to the real world and we feel a little hollow that perhaps we didn’t understand something or create a million what-if scenarios to confuse us.

This time was going to be different. We were going to create a unified voice, on behalf of my father, with the sole purpose of making sure his voice is heard, even as it vanished day by day.

I was doing some housekeeping on my laptop last night and came across the original list of questions. Below is a simple cut-and-paste, without edit of what we came up with. Back then, we were frightened, naive and completely oblivious.

• What can we do to help him today?
• How can he help himself?
• Costs / Medicare etc…will we have to sell our house to pay for this?
• What type of ALS does he have and how is that different than the others
• What about alternative or natural solutions?
• What about drug trials? Would he qualify for them?
• What is my father’s prognosis? How much longer?
• How do we manage symptoms such as difficulty swallowing and speaking?
• What is bulbar als and how does that affect his prognosis?
• Are you absolutely sure it is ALS?
• Will his death be painful?

I stared at my screen and cried; cried until my eyes were puffy. I
cursed the cruel, fickle gods and recalled every minute of my father’s
suffering. Unlike most crying fits, I did not come out of it feeling
the calm wash over me as the adrenaline left my bloodstream. I rocked
furiously in the recliner and chugged what was left of the wine. How I
didn’t launch the glass across the room is beyond me. I dropped F-bombs
and punched a wall. I paced and dropped to my knees and cried more. 
The light of day did nothing to dissipate the anger, the lump in my
throat, the nausea in my stomach or the tension in my jaw, neck and
hands.

How quickly life has changed since then. The questions are almost a joke in light of the horror of the last year.

Thank you for listening. One day, the pity party will stop and I will “get over it.”

[note: this post is going up without proof-reading or editing or previewing. If I thought about it for another second, I would never post this. So, please forgive me]

Retraction

Officially retracting the previous post. EFF!

Math Geek

Despite the fact that I am not a mathematician by trade, I would play one on TV. I have always loved math and sometimes wish I could go back in time and tell my high school guidance councilor her to stick it in her “pi-hole.” After I took one of those career tests to determine which profession best suited my personality, she told me that I should become a “Forest Ranger” and proceeded to hand me literature of colleges in the area (ie Brazil) that specialized in Forest Rangery. My dreams of numbers were shattered.

Up until that point, I was certain I was going to become a mathematician, physicist, astronomer or aerospace engineer. I was on the honor roll and in the honor society at a very well respected technical school in Boston. I had studied calculus on my own while in high school. All my friends were planning the next phase of their journey and applying to MIT, Harvard or Blaine’s Hair School. I, on the other hand, just had the rug pulled out from under me. But I persevered anyway and attended Northeastern University for Electronic Engineering (these were in the days when computers were as big as refrigerators and programming involved punch cards…bajillions of them).

But forever in the back of my head I kept remembering “Forest Ranger.” (yes, you are supposed to be laughing hysterically right now). A couple of years later and I learned the concept of the self-fulfilling prophecy. I dropped out of school as I was beginning to FLUNK, yes FLUNK some of my math and physics classes (if only they had classes on how to light a campfire using only a grub). Thus began my downward spiral in life that I will share with you in future posts (after all, I am up to two posts this year!).

So when my 11 year old comes home with math homework, I am thrilled to be able to offer some assistance. I am confident in my math abilities. A couple of nights ago, his homework consisted of making up 4 pages of math worksheets that he did not do back in November for various reasons. The topic was called Order of Operations, also known as Order of Precedence. It is a simple set of rules that determine the order in which a series of operations should happen in math. For example:

2 + 3 x 2 = ?

Well, if you simply go from left to right, then you would get 10 (2+3=5. 5×2=10). The reality is that the Order of Operations mandate the hierarchy that supersedes simply moving from left to right. The correct answer is 8. It is 2 + (3 x 2) or 2 + 6.  A quick Google search shows that this order has been the standard since at least the 1500′s. The “kids these days” have a mnemonic called PEMDAS. Which stands for:

Parenthesis
Exponents
Multiplication
Division
Addition
Subtraction

So, no matter how complex the problem, this is the algorithm used to solve it. I learned this in junior high and had it reinforced every year and even into college while learning programming.

Now, if the problem is:

3 x (2+5) x 6(4+8) + 20/(5-1) = whatever the hell it equals

…then everyone in the world will has an opportunity to get it correct and know with confidence the rest of the planet got the same answer.

Back to my son, since no one is reading about Order or Operations anyway. He was working, rather diligently I might add, on his homework. I was very proud of his focus, at least his definition of focus. Then, when he was halfway through the homework, he asked me a simple question. I showed him my answer using the process above. He looked at me and said “What are you doing? You can’t just add parenthesis wherever you want. It will change the answer!” I told him you can add parenthesis wherever it made sense to keep things together. I quickly glanced through all his answers and realized he had done each and everyone of them incorrectly. I told him that. This was the beginning of the end for him. At this point, he proceeded to justify his answers, screechingly, by stating this is the way he learned it. He then proceeded to tell me that I had learned it the “old fashioned way,” screechingly. He then continued on his screeching rampage and suggested that A. How could I have allowed him to do it the wrong way and B. Why do I always have to criticize him.

We are no longer on the topic of math. We are no longer interested in “getting over it” and correcting the errors. We have devolved into a screechfest. I say “we” on purpose. At this point in time, I literally dropped to his level and joined in, as if we were caught in a whirlpool and I was wearing a lead life vest. He continued along this course for well over 20 minutes. Never once accepting responsibility.

We were no longer being productive and in fact had downgraded to destructive, so I sent him to bed; literally the only thing I could have done that would not have been the equivalent of a lion eating their young. He stormed off, disgusted by me while I stormed off disgusted by me too. “Can you believe that kid?!”, I went on for the next 20 minutes.

After the house quieted down, I remembered the importance of this homework and how much effort he put into despite getting each and every answer wrong. I decided to try something I have never done before. I am usually an early riser. Mike has to be up by 6 in order to get to school on time-ish. I woke up at 4 and grabbed his homework, strewn about all over the living room and I found one of those big, pink and trapezoidal erasers and began erasing each and every one of his answers. For some reason, my baby goats have never learned to erase with finesse. They often leave the paper in worse condition than if they had just left it alone.

I erased each answer and calmly put parenthesis around a few of the problems in order to organize Mike. I then tip-toed upstairs at 5AM and whispered calmly in his ear. I told him that I had put on some water for tea, heated the kitchen (a common excuse for not wanting to get out of bed) and that no one else was awake. “Michael, please get up now and we can get this done together. I promise; no fighting.”

He rolled over and looked at me and said “Not now Dad. You should have told me you were going to do this last night. It is too early” and he turned away. I walked back downstairs and nearly cried. It was not anger this time. It simply was a stunned feeling that my 11 year old has not only bested me…he has bested himself.

I sat down at the kitchen table staring at his homework; confident that he could do it….equally confident that I could do it for him without anyone being the wiser. The internal debate raged on in my head until 5:30. Michael came downstairs, shaggy doggedly and said “Dad, I am ready now.”

I sat next to him and watched him write each number down and finally complete his work in time for school.

This, the longest post ever written, served only a single purpose: simply, to tell you how proud I am of that boy.

Now, if I can just get him to brush his teeth with toothpaste.

I’m Back-ish!

OK, it seems that enough time has gone by and I no longer have any excuses to not write. In fact, I was looking through the standard repertoire of reasons not to write and I realized I pretty much how nothing left in the bag.

After all, this blog was supposed to be a showcase for some of my writing, regardless of whether I had any real talent, direction or ambition.

2008 will forever be etched in my brain as the worst year of my life. My family and I watched as my dad suffered with one of the cruelest diseases ever, ALS. Anyone who has been to my blog in the last year, already knows that. As we pick up the pieces as a family and learn to burn the images of the last year out of our heads and latch on to the wonderful memories of the man, I realize we have so much more work to do.

Here are some of the goals of this blog. This is not really a resolution per se, but a reaffirmation of the value of Cafe Leone as an entity unto itself…a destination for some poor souls that stumble upon it on their way to a real blog.

• Continue to use this site as a “today my kid picked his nose today and ate it” site. Having 3 or so baby goats is not easy but it does provide a lot of fodder for some writing prompts.
• Link to photos – I am a proud user of Flickr photos and I have been trying to make better use of it. I love the ability to quickly upload a cellphone picture to Flickr from my Verizon Voyager. There are also family members and important friends scattered around the globe who are occasionally interested in what latest pose my daughter is striking.
• Use it in conjuction with other social networking sites such as Facebook, Twitter and Plurk. I have been avoiding using my blog for those <140 character posts because the other sites are so much better at it. But it is time to use my blog again as warehouse for my imponderables and true confessions.
• Write about writing – I know everyone in the world is writing a novel. I also know that no one should admit that fact until, at the very least you are sitting at correct side of the table in a Barnes and Noble signing your new book. Well, I am no different. I have randomly picked up a keyboard and began writing. This site will be a proving ground for some chapters here and there and a request for your ideas.
• There is a small chance that I will start this blog up again and put a more controversial spin on it. Whether it is liberal politics or atheism, expect to see more of that stuff. Hopefully, you will all see it for what it is…a simple way to get a dialog going without disrespect or controversy.
• I also purchased the domain cantinaleone.com which should highlight some of my journeys on wine trail. It really won’t be a wine blog as there are so many excellent wine bloggers out there; I am not worthy to even carry their swill buckets. But, it will be about the journey from knowing almost nothing to amassing a respectable collection. All of this will be done within the shadow of my dad who made his own wine every single year.
• I will still write about my dad and my culture from both sides. My father is from Italy and my mom from Uruguay. I hope that I can make their culture shine. I am extraordinarily proud of my heritage.
• The ultimate goal though is to reconnect with all the really cool bloggers that have been with me since the beginning of this journey. I will see both of you in my Reader.

I can also tell you what this blog will never be. It will never be a daily journal. It will be updated when it is updated. Be it once per month or once per year.

There you have it; you now know precisely what I know.

Thank you both for everything!

Eulogy

Hello, as I am sure you all know, I am Donato Leone Jr. I am here to say a few words about my father, Donato Leone Sr. I am not going to talk about how cute my father’s accent was or how disappointed he was with me when he learned I was a lefty. I promise I wont embarrass him by mentioning that he was so resourceful he would cut some scrap pieces of rug into the shape of a foot and stick it in his boot for extra cushioning when his boots would start to break down. I do not have stories about the day he bought me a bike in the second grade, my best Christmas ever in the fourth grade or even the first, and last time, he brought me fishing in the fifth grade. That is not how I remember my dad. Please allow me just five minutes of your time to share just a few words with you.

Today, I smile

Today, I smile because today he is free. He is free from the relentlessly-tightening grip of the shackles that bound him. He is free from the ever-increasing weight of those chains handed to him just 13 short months ago….a million yesterdays ago.

Today, I smile because he no longer struggles for each precious breath. He no longer marches, unwillingly to the merciless drumbeat of ALS.

Today, I smile because I know my father…Dona, Papa, has left us in peace, with his dignity intact and surrounded by those who love him.

Today I smile because we can now go on to the business of remembering the good moments and forgetting about the horrors of the last 13 months.

I want to share with you just one such moment:
I watched him get out of the car as I watched him do it a million times before. The small window on the second floor was one of the few windows overlooking the driveway. I watched the door open on the green Pontiac Tempest slowly open. Even more slowly, my dad would swing his legs out and there he remained. His hands resting on both his knees. Staring ahead of him; staring beyond the house just a few feet away. Staring beyond Brighton. Perhaps he was looking back in time; back to a time that was both easier and more difficult. Here, in America, he had an opportunity, a future, a chance to create the life that he dreamed. He also had his beautiful bride. In Italy, he had everything else. His connections to his past, his family, his support system, his language and his culture.

The view of the top of his head never changed over the years, except for the graying and the receding. His hair was made even grayer by the ever-present cement dust he brought home from the construction sites; the only remnant of his job that he brought home with him. I remember he could be patted like a dirty pillow and dust would envelope him; never diminishing no matter how many times you hit. It was like the dust was coming from inside him.

I would see my dad lift himself with a single groan; using his hands to unbend his knees. The years passed and that pause would get longer and the groan a little louder. You would think the first stop would be the kitchen table for dinner. But not with my dad. He would immediately go into the basement where he had the courtesy to install a shower a few years before. That way, he could wash off the residue of the construction site. When he came up, he almost always wore a clean pair of Dickies and a sleeveless tanktop tshirt. He still had dust on his body, but this time it was the clean smell of baby powder. There is no way to forget that smell because he wore it every day of his life. It was the smell of clean…talc dust replacing cement dust.

That is how I remember my father. He was not a friend; he was a father. He was a father who got up at 4AM everyday; drank instant coffee, went to work building walls, came home exhausted, ignored blackened fingernails wrapped in electrical tape, watched candlepin bowling and fell asleep at the kitchen table. Little did he know that with those same calloused hands that he used to lay bricks, he was also paving the way for his family to live an easier life in America.

When I would check in on my dad over the last 13 months, and ask the stupidest question ever: “How are you today, Papa?”, he would look at me, smile and give me the thumps up. This never changed until a couple of weeks ago, when the disease made it impossible to move his muscles into a smile or even lift his thumb.

So today I smile…because I know you would have. Today, I smile because I have no choice.

Donato Leone Sr…I miss you already.

Cold Hands

My father, Donato Leone, passed away at 9:45 this morning. He was surrounded by those who love him. There is no way I can say he died peacefully, but his death certainly brought peace and ended his struggle. He remains my hero but he now shares that spot with my mother. 13 months ago, she promised him that he would die at home, under her care, with his dignity intact. Today, as the hearse pulled out of our driveway, my mother composed herself and said: “I did what I promised, Donato. I am so proud of myself.”