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.

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.

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.