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.

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

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!

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]

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.

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.”

My dad wrote this last week. He wrote it while he was having his coffee and my mom thought he was reading the paper. His hands are slowly becoming paralyzed and he usually communicates now by pointing to letters on a letter board. Somehow he found the strength to write this.

It is very awkward for me to see these words. In my mind, my dad is not one to speak in metaphors. He is a very cut-and-dry, matter-of-fact kind of man. Additionally, he only has a 6th grade education!

But, as he has proven to me a million times in the past, being smart has little to do with education. Quite literally, he is the smartest man I know.

This letter is barely legible. Below is a poor transcription and an even poorer translation. If anyone knows Italian and wants to take a stab at translating this, feel free to email me your thoughts.

Transcription:

Nel 1990, sono stato condonnato, io sono appellata la causa e con un avacato dottore e un by-pass, io vinta la causa. Sono rimasto libero per 17 anni. Facevo quello che volevo. La famiglia ogni tanto me regalavano un nipotino, ma quanto e stato 2007 sono e stato condonnato a morte, senza la possibilita di appellare. Solo invece di andare in carsere me anno mesoo arresto de mi domiciliare. La guardia de la carcere e una molto buona. Certe volte mi fa rispettari la legge. Essa prepare da mangiare e buona. Solo che quanto io lo mangio tutto si riduce a polenta. Non posso uscire di casa, mi e stata ritrata la licenza, non posso communicare de con nessuno ni meno con il miei 5 nipotine, cosi o raccamandato a la guardia de la carsere che lo dicesse essa al 5 nipotine che io voglio bene e sieta per me il piu bel regalo.

Translation:

In 1990, I was sentenced. I appealed the case and with a lawyer/doctor and bypass surgery. I won the case. I was free for 17 years. I was able to do what I wanted. The family occasionally gifted me with a grandchild. But in 2007, I was sentenced to death without the possibility of appeal. Only instead of being put in jail, I was confined to my home. The prison guard is very good. At times, she made me respect the law. She prepares meals and they are good. But everything I eat is reduced to [the consistency of] polenta. I cannot leave the house because they took away my license. I cannot communicate with anyone, not even my 5 grandchildren. With that, I told my prison guard to tell my 5 grandchildren that I love them and that, for me, they are the most beautiful gift ever.

I remember when I found out about my father’s condition. It was October of last year. He was beginning to slur some of his words and he felt not quite right. We all assumed he suffered some sort of mini-stroke and that he would either recover from it completely or that we would have to get used to his weaker tongue.

I was at the doctor’s office, taking care of my own medical issues. At the time, these issues seemed like most important thing in the universe. As I was waiting in line for the receptionist, I received a text message from my wife. It simply said: “What is ALS?” I nearly collapsed in the line. I got dizzy and my heart raced. I knew precisely what this was in reference to. By the time the receptionist was ready for me, I had tears in my eyes. She never looked up at me.

As I was not able to drive at the time due to my condition, I had to call for my ride. I waited across the street from the hospital at a Starbucks. I sipped an espresso as I stared numbly out the window and reflected that life as we all knew, would never be the same.

ALS (amyotrophic lateral sclerosis), or Lou Gehrig’s disease, is a relentless, horrible disease. There are no “good days.” Each one is worse than the other. Each day, I am still shocked at how my dad’s condition progresses. We do not lie to ourselves. Even though this man no longer looks like the father I once knew, this disease is not finished yet, he will only get worse. This disease is very linear. It is a steady slope downwards. There are no remissions and, yes Papa, there is no chance to appeal.

I took my dad to the Charles River. We took a brief walk on the path and paused to look out at the water, rowers and random children feeding the ducks.

We didn’t say a word except when we were talking about a home repair that my brother-in-law was nice enough to take on. That is when he wrote me a note and said in Italian “that is what I always wanted to do with you.” A painful reminder of unfinished business.

At some point, he saw me checking emails on my cellphone and he began laughing. I knew he was reflecting on how far away his life was from cellphones and emails. He then pointed to himself and gave himself the thumbs down; a far-too-familiar hand signal that he is not well.

The hospice nurse asked my dad whether he was afraid to die and this is what he wrote:

“Adis, when I was well, death was all I thought about and it made me scared. Now, you see my condition; I don’t speak, I can’t eat or drink, I can’t walk and all the other things I can’t do. To me, death is the best solution.”

I also just realized that my father was using the same gas mower that we have always had! This thing is a relic and if my memory serves me correctly, never really worked all that well to begin with. Apparently, last week, my dad attempted, stupidly, to mow the lawn despite his condition. Well, he fell down a couple of times trying to pull-start the engine.

Since those falls, my mom suggested that she be the one to do this chore (no one consulted me with this decision, of course). My cousin had an electric mower and brought it over and instructed my mom in the finer points of lawn care.

Imagine my surprise pulling into my driveway and seeing my mom, with her arthritic knees, dragging the machine around in curvy attempts at straight lines and trying not to run over the cord. I saw my dad, supervising the lesson, clearly laughing on the inside at the thought of an electric lawnmower. As far as my dad was concerned, each blade of grass was made of titanium requiring mega-horsepower and a wake of burning oil billowing behind him.

But, that moment, coupled with an ever-increasing number of moments, stabs me in the heart with the realization that our lives are changing and we are slowly accommodating. The status quo is no longer. At 78, my father can no longer mow the lawn. He cannot make it into the basement to HIS tool bench that at most I have been allowed to borrow from his collection of 15 hammers. He did not help me install the AC in his dining room yesterday and when I needed a saw to cut a strip of wood and I could not find one. I asked him and he wrote down precisely where 7 of his rusty old saws were hanging. His role has changed in just a few short months from the man who could build shelves using scraps of wood; no shelf matching the one above it and no 90 degree angels to be found anywhere. The man who nurtured each tomato to perfect ripeness, no longer notices the weeds have overtaken the garden and we can no longer determine where the basil lives.

As we all watched and laughed at the bittersweet image of my mom mowing the lawn, while my father relinquished control for the first time in his life, I stopped smiling and began to cry.