Cafe Leone

As both of you know, I am an atheist. As both of you know, my dad is dying with Lou Gehrig’s disease. As both of you know, this has become a source of unbearable stress on the entire Leone clan. We are all dealing with it as a family, but in our own way.

A conversation I got into recently (actually an amalgamation of a few conversations I have had recently) boiled down essentially to some variation of this statement: If you believe in God, and therefore heaven, then at least you can find comfort in knowing that you and your dad will be together again some day. In the meantime, you could be happy knowing that your father will be with God in heaven. Don’t you want that for him?

It is important to note that I don’t believe in god in the same way I don’t believe in Santa Claus. I may want so badly to believe that a jolly fat man will land on my roof every year and provide me with a Hot Wheel loop-the-loop track. But wanting it does not make it happen. Desire does not validate . I can drop to my knees, pray to any one of the gods, look to the heavens, speak in tongues, belt out hymns in a church, drink chicken blood and absolutely none of that will make Santa drop down my even more non-existent chimney.

What keeps me up at night; what makes me cry at the drop of a hat; what worries me; what stresses me out and what can grab hold of me and punch me in my face is not that my father is going to die. Death is a part of life. What gets me mad, is that my dad will suffer. He is suffering. His body, his spirit and his dignity are slowly slipping away from him as this fucking disease chips away at each nerve ending. He is reduced to writing his words on paper; he needs to excuse himself from the table as he has to clear the food from his cheeks with his finger; the disease makes him laugh and cry uncontrollably and often at the exact same time; his sense of balance is compromised; he cannot cough efficiently and his swallow muscles are quickly becoming paralyzed.

When he goes, I will miss him. I will weep for him. I will find constant reminders in my day to day life of him. I will celebrate his life and mourn his death. But, as when anyone dies, there is no “other side” to look forward to. My dad’s soul will not rise into the clouds or sink into the ground. When he is gone, he is gone except for his memory. I do not look forward to or think about a day when I will join him. I only look forward to the day he is free from this unbearable suffering. The day after he dies, I will leave up to nature.

My opinion until I change it. Thank you for allowing me to express it.

atheism, my father | 14 Comments »

I raced home from work tonight. It just might be the first night where I don’t have to drive someone to baseball practice or karate or the myriad other events that normally dot our evening.

Work has been leaving me numb lately and it is all I can do to work less than a 10 hour day. Too many projects, deadlines and fires to put out. You have all heard me whine about that ad nauseum.

The only thing on my mind on the drive home was a bottle of MacMurray Ranch Pinot Noir sitting in my cellar with my name on it. I could even picture on which shelf it was sitting. I knew exactly where I wanted to enjoy this wine; outside on the picnic table, under the grape arbor. This just might be my favorite place on Earth. Despite living in the city, with buses passing the front of my house every 12 minutes, under this arbor and I am instantly transported to the little village my dad comes from in Italy.

I didn’t even go into my house. I just went into the wine cellar and pulled out my wine. I brought it out to the picnic table and called my father to join me.

As you know, my father is battling Lou Gehrig’s disease. He can no longer speak except in a very thick, gravelly voice filled with mostly grunts and lots of guessing by his family. Even the shadow he casts has changed as this horrible disease takes over his once powerful body.

I told him to bring down a glass for himself and to join me. He came out with a plastic cup and I laughed. I poured him a glass and he eyeballed the 18.99 sticker still on the bottle. He smiled at me while at the same time shrugging his shoulders signaling his disbelief that a wine can cost so much.

Because of his disease, when my father drinks thin liquids, like wine, we have to be prepared for the reality that the liquid will move faster than his mouth can process it and he may sputter. This is a cause of enormous embarrassment for him and stress for us as we hold our breath.

I was busy swirling and sniffing while he dumped the wine into his mouth ungraciously. I saw him shut his eyes as I assumed he was merely trying to work his swallow muscles. But when he finally did swallow, his face turned to a grimace. He shook his head as if he just drank some vinegar and we laughed.

Here was a man who spent his whole life drinking only his homemade wine. He is no longer able to make it himself and I have begun stocking the cantina with bottles I purchased. Every single wine I have shared with him, caused the same reaction.

Once he got over the initial taste of the wine, we sat there, under the arbor with fresh shoots that will grow so thickly this summer that it will keep us dry when it rains. We were together, without saying a word, sipping the wine. I was no longer looking for those damned “cherries, spice and hints of vanilla” that the wine-maker tried to convince me were in there. Now, it was simply about being together; father and son, with never much to say to each other even when he had his voice. But the silence, the wine, the picnic table, the beautiful spring weather and the good company all combined to make my stresses slip away; even if for just a brief moment in time.

As the sun popped behind the thickening clouds, my father stood up and looked at the grape vines and held a fresh shoot in his hands. He tapped me on the shoulder and began speaking as if he had something very important to say. I could not honestly say that I understood everything but it was extremely clear to me that he was telling me how to prune the vines in the fall. I looked at him in the eye and told him that I am such a city boy that he will need to show me again in the fall. He smiled and lifted his hand and gave me a thumbs down.

my father, wine | 15 Comments »

You may not have noticed, but I haven’t been “around” the internets for a while; I certainly haven’t been blogging about it. Other than a few random tweets on Twitter (I would be honored if you would follow me here), there really hasn’t been much happening to the Virtual Dan.

You see, the 3D Dan has usurped time and energy from the Virtual Dan. Therein lies my biggest problem: Life gets in the way of living.

I am not so selfish as to assume my life is any more stressful than yours. But I am bold enough to tell you that I am not doing a good job of managing that stress. I have always prided myself on how well I can handle stress. I was an EMT for a while and I even took the Air Traffic Controllers exam ( a million years ago) when I realized that being a pilot would take a LOT of money. I loved stress and crisises crisiums crises.

Things are different now. The stress is no longer an adrenaline rush. This stress is a pervasive thread that weaves itself into each cell in my body. This stress has now been so internalized that I know there is a physiological price to pay.

Here is a brief rundown of some of the things on my plate.

My health: My leg has healed leaving yet another scar the size of a saucer on my thigh.  I need to receive Remicade infusions every 6 weeks. Each infusion takes at least 5 hours. Very draining.  Everything is fine but I fear a flare up at any time.  One result of my previous flare-up is that I stopped running as it is completely impossible to run with this disease. Starting back up again has been a challenge. I did go for a 3.1 mile run the other day though….now it is all about consistency (for those who follow my blog, I bet you can see how challenging “consistency” is for me).

My Baby Goats: Insanity is the rule at the Leone Estates. Each baby goat brings their own set of challenges to the table. I’ll stop here, before saying something I might regret.

My Dad: ALS (Amyotropic Lateral Sclerosis) is a shitty disease. I am watching day by day as my dad progresses through the symptoms. He is virtually unable to speak now and his swallowing is severely affected. We all know what is happening to him and what will happen, but he prefers to work through this one day at a time. This is completely opposite of the “big picture” approach I would take if faced with the same prognosis, but I totally respect his perspective.

My parents live upstairs from me and we bear witness to the merciless, tomorrow-will-be-worse-than- today, progression of this disease. This puts an intense amount of pressure on the kids and I feel this leads to some of the problems that I alluded too above.

I know my dad is suffering and will suffer and that kills me.

Last Sunday was my niece’s First Communion in the Catholic Church. My parents have always considered themselves Christians but I have never in my life seen them practice it.  Last Sunday, we were all sitting in the same row and at one point, I looked over and saw my father on his knees praying. I may be an atheist, but this tore at my heart and I had to leave the church weeping like a child.

My work: INSANE! A pending deadline on a major, highly-visible project is stressful enough without the added stress of my normal day-to-day duties. But, truly, I love my job.

So, that is it in a nutshell…utterly uninteresting. The only purpose for blogging about it is to give me something to blog about.

Thanks to both of you for listening!

my father, parenting, uncategorized | 7 Comments »

My father made his own wine every year since he came to this country from Italy. To him, his wine was the only wine that mattered. He scoffed at people that spend money at the wine shops, let alone spend 50 dollars or even much more for a bottle.

My dad’s wine was something to be consumed, like water or beer, as a way to quench thirst and to accompany the meal. It was not meant to be swilled, sniffed or spat. There would be no conversation about bouquet, finish or tannins. With his wine, you could add ice cubes on a particularly warm day, or you could add ginger ale if you were in the mood for something fizzy. You could add drippingly ripe peeled peaches to a glass of wine and you had an instant dessert. This is wine that children were allowed to drink, diluted with water.

His wine was to be consumed in a juice glass. My dad still does not realize that people can spend 40 dollars for a single Reidel burgundy glass. I don’t want to be the one to tell him that I have two of these glasses.

Every year until the last 5 or so, I helped my dad make the wine in our basement. I helped open the splintery crates and macerate the grapes using an antique machine with noisy rotating drums of teeth. I helped press every last drop of juice from the grapes, stems and skins. Then, break open the cider press, take out the remnants…and re-press them to eke out another few drops. Nothing went to waste. I then brought out the stems and skins, compacted to a tight brick approximately 24 inches in diameter and 8 inches tall, out to the garden. He would use the remnants to grow tomatoes, basil and beans.

My dad would then spend the next few months coaxing a drinkable concoction from the foamy, fermenting grape juice carefully placed in a dozen five gallon glass containers. I never was part of this process. Perhaps, I was wasn’t so interested, or perhaps my dad simply did not want to reveal his secrets. But, I could never forget the fruit flies that inundated the house during this time.

Unfortunately, now my dad is battling a terminal illness. Since finding out that he was dying last year, he has stopped making wine. His stash from the year before slowly dwindled until there was a final gallon left and we have since gone through that.

As part of a living homage to my dad, I have able to amass a small collection of about 40-50 bottles of wine that I now store in the same cantina my dad and I would ferment his wine. This collection is my little homage to a great man. Right now, I am a neophyte still trying to determine what I like and have an almost obsessive desire to learn about all the wine-growing regions, varietals and vintages. I also love knowing what a wine is “supposed” to smell and taste like. I scour the internet for reviews and see if my opinion is in line with the pros. Usually, I am way off the mark, but it is such a fun hobby that I don’t care if my nose does not pick up hints of gooseberries and peach pits.

I sometimes find myself alone in the cantina, the same one I helped him build 30 years ago, I smell the years of spilled wine on the floor, the drying wine at the bottom of some of his bottles and the mustiness of that comes with time and living.

I have shared with him some of these bottles. He laughs weakly when I tell him the price (I only own one pricey bottle of wine..everything else is 25 dollars and most under 15…but he still laughs). He will take a swig of some Argentine Malbec and it is funny to watch his face contort because nothing tastes like the grape juice and battery acid that we used to make.

I enjoy at least one glass of wine a night. After I fill my glass, I raise it to the air and say “Here’s to you, Donato. Mille grazie per tutti. Cin Cin.”

my father, wine | 8 Comments »

ALS SUCKS!

my father | 5 Comments »

It is an amazing feeling to be the tallest in the room! I went to a dinner party last week with my parents and some cousins at my godmother’s house (yes, even Atheists have godmothers) . This is something I have not done in over 20 years and it was fun to see my family and have adult discussions over wine and awesome Italian food and pastries. Here is a group of us in the world’s largest kitchen! Holy crap, my cousins have a kitchen bigger then my entire house! It was something like 8 billion square feet. There were 6 more people around the stove at the same time this picture was taken.

We made polenta, which is a delicious peasant meal made with cornmeal. Traditionally, the way we have it with my family, is that we make it in a giant pot and pour the cooked polenta out onto a giant wooden board and then it is covered in a rich meaty tomato sauce. Everyone eats off the same board with nothing but forks working our way into the center while the kids trace out some path or try to make a map of Florida in the cornmeal. It is such a community affair and I always miss it.

At my godmother’s house, we did it slightly more civilized. We ate off plates instead. This didn’t diminish the ritual or the relevance for me. It was a great time.

Of course, the 400 pound gorilla in the corner was actually a 160 pound Italian guy, my father, with ALS. As his disease progresses, it affects (or is it effects? Can you remind me Terri?) his speech, breathing and swallowing. This is very different than the kind of ALS that affects the extremities (ala Steven Hawking). He was virtually non-verbal and had obvious difficulty clearing the food out of his mouth which frustrated him, I can tell. I was sad but it was certainly good for all of us to get together like this.

On the left, is my cousin (for Italians, EVERYONE is a cousin and I have no idea if he really is) Rafael. Then there is yours scruffily, me. Then my dad, my mom (who hasn’t let go of him since his diagnosis and then my other cousin Nazzareno (spell check wants to call him Mozzarella!).

Trust me, my pants were not as parachuted as they appear.

my father | 6 Comments »

Me, my mom and my dad at my in-laws’ dinner table having coffee and Greek pastries. My in-laws are Greek and they make the best pastries.

I am a tad scruffy because I am taking a med that is really wreaking havoc with my skin. Trust me, I used to look like Brad Pitt. But now I look more like a rabid and foamy pit bull….with bad skin.

One of my favorite things to do when I am looking at pictures is to remove the subjects from the foreground and to focus on everything else. Check out the background at my Mother-In-Law’s house. Clearly, you can see that they have a shrine to my children; their only grandchildren. You can also see that awesome 1980’s photo of my sister-in-law behind my mom’s head! I am ecstatic that my mom doesn’t have my high school photo on her wall!

I have never really paid attention to that painting in the background before despite having seen it a million times. This bit of Americana is an atypical site in this sternly Greek household.

My mom and dad came over my in-laws’ house for coffee on Thanksgiving. Otherwise, they spent their holiday alone, by their choice. We are entering a period of quiet reflection at the Leone Estates; a sort of introspection as the reality of my father’s illness sets in.

What I am afraid of though is that we will try “force” the moments. This picture of me and my dad, is one of the only ones we have ever taken together. This is not because we are not close or have a strained relationship. It is more because we have never been an overly affection family.

my father | 6 Comments »

Now you know where I get my disarming good looks!

my father | 1 Comment »

I drove my mom and dad to the hospital today. Ostensibly, for a “second opinion” on his ALS diagnosis. Realistically, it was a confirmation of what we already knew: He has short time left. His expiration date is set for 2 years.  Make the best of it. The business of dying begins today. Get your affairs in order. Death won’t hurt. Dying will.

I live in a two family house and my parents live upstairs. I see them every day and so do my three Baby Goats.

For the entire drive up, about one hour, we didn’t say a word to each other.  Small talk was wrong. Big talk was wronger.

With the finality of the news seeping into our brains, we said nothing again.

Then, half way home, my dad, looking straight ahead, said “take care of your mother.”

I can’t do this.

my father | 17 Comments »

Hello Everyone:

I just want to thank you so much for your kind words yesterday. I am still utterly stunned at the news of a terminal illness in the family and I simply had no idea what direction to turn.

It truly helped to read all your thoughtful comments yesterday. I have reflected on them many times in the last 24 hours.

It is an amazing testament to the power of blogging that 10 or so comments from different people from all walks of life and locations can join, ever-so-briefly together, to reach out a hand of support.

I am amazed, humbled and eternally grateful.

Me

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my father | 1 Comment »

Three days ago, my father was diagnosed with ALS, or Lou Gehrig’s disease. He has been given two years to live. The strongest man I know with no physical limitations whatesoever today will die from paralysis and asphyxiation in two years.

Will someone please tell me what the fuck I am supposed to do?

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my father | 20 Comments »