Michael and Daddy VLOGGING!

My 14 year old and I riffing about our respective blogs/vlogs and introducing 1lonetoad.com and Mike’s YouTube channel (ikonmelee). Beautiful Read the rest of this entry »

Early morning run…

Yes, I know it is dark and I know you really can’t see me….but isnt that a GOOD thing? The Read the rest of this entry »

First Run(ish) in a Million Years!

The New Balance Track and Field at the YMCA in Newton. Have been dreaming of this day for over a Read the rest of this entry »

Living Deliberately Part 2

Took a ride to Walden Pond for a few minutes of meditation, walking and vlogging (My battery died so I Read the rest of this entry »

Living Deliberately Part 1

Took a ride to Walden Pond for a few minutes of meditation, walking and vlogging (My battery angrily beeps at Read the rest of this entry »

103.7 does not a radio station make

Spent Friday night into Saturday with a rather severe fever. By every way of looking at it, I should have Read the rest of this entry »

Auto-meditation

Trying not to bore you or inundate you with myriad vlogs but I wanted to share with you a technique Read the rest of this entry »

Stair walking

Walking up 10 flights of stairs for the second time in over a year! Come watch me wheeze!

A Little Afternoon Delight

Home for a quick juice-feast. I have the Champion juicer from a thousand years ago so juicing is often a Read the rest of this entry »

First Vlog Pt 2

My First Vlog

Please ignore the monstrous zit on my face. A brief recap of where I have been over the last few Read the rest of this entry »

“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!

Tickle Cat ala Leone

Our version of the popular tickle cat video

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.

Neverending story

This is approximately one minute of my daughter’s LONG story! The longest story ever! That is what you get when Read the rest of this entry »

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.

Why we don’t own fancy stuff

My 8 year old son practising his bo for karate. He totally invented the routine for the song.

photo

Originally uploaded by danleone.

photo

Originally uploaded by danleone.

photo

Originally uploaded by danleone.

photo

Originally uploaded by danleone.

photo

Originally uploaded by danleone.

photo

Originally uploaded by danleone.

photo

Originally uploaded by danleone.