Natale Caliendo

March, 2014
MARYLAND, USA
A collaboration between Natale Caliendo, Louise Bensky and Berenice Vera Nieto

Natale with son Noah

Natale with son Noah

Anyone living with Factor V Leiden (FVL) knows that it doesn’t just manifest into our system. It is a part of us; it has always been there, from our birth to our first breath, through childhood to adulthood and beyond.
Natale Caliendo calls it The Beast. He chose to give it a personality because you don’t mess with it when it is awake and you don’t so much as breathe when it’s asleep.
Many times we don’t even know it exists within us and we don’t meet The Beast until it awakens – when we are older and slowing down.
Natale was only 28 when the animal finally woke, decades early, and it was pissed to no end.
Aware that FVL can surface early through conception in females, or by other means, his hematologist, cardiologist and primary all seemed to agree that his condition was conclusively activated through a heavy and insurmountable level of post-traumatic stress.
Yes. Post-traumatic stress.
Natale is a third generation Italian-American, raised by a man who took the greatest pride in the Italian heritage; a culture where the people have a special belief structure regarding father and son, a sacred and holy bond.
When Natale’s son Noah was born, he fell completely in love and felt their own special bond right away, like the one he had with his own father.
He cried tears of joy; desperately wanting to be everything to this boy that his dad was to him however soon after Natale fell out of love with his child’s mother and his decision to walk was difficult; but walk he did and little did he know he wouldn’t see or hear from his son for two years.
To say that Natale was gutted and heartbroken is the understatement of the century. In his mind, Natale began to accept he most likely would never see his boy again, that he was a disgrace to his family for not keeping his father’s ideals of family intact. All these sick and deluded ideas filled his head and as he became more and more out of control with his emotions, the clots began.

Natale's clotted foot

Natale’s clotted foot

It is said that where the mind goes, the body follows and Natale’s mind went straight to hell at the speed of light, causing massive disturbances in his body and bringing his health to dangerous levels – increased blood pressure, migraines, antidepressant medicine side effects and kidney infection.
Natale was 28 years old when the first clot appeared in his left leg but he let it pass. Then another one appeared in the other leg, followed by another and another…they kept coming. The pain was sharp and severe, like he had just taken a bullet.
The Beast was screaming yet he was too numb and ignorant to notice or even care.
One night he went to bed, oblivious to the pain, and the morning after, he awoke in tears and sweat, screaming in panic, begging for death and urinating blood over and over again. He looked down; the pain horrific but the sight of it was even more unimaginable.
Try to imagine what a blood clot in the genitals feels like.
After what seemed like hundreds of tests for things like cystic fibrosis and non-Hodgkin’s lymphoma, Natale’s aunt, Louise, suggested he get tested for blood mutations, in particular FVL and his hematologist, after all was confirmed, said there were further risks of coma, pulmonary embolus, cellulitis, cardiac arrest and brain aneurism.
The hematologist had some curiosity about the uniqueness of Natale’s problem, such as how it attacked in his late 20s. He said that bodily disturbances caused by toxic stress levels could play a key role in the untimely activation of a genetic disorder and it was obvious to him that Natale’s emotional trauma, brought on by prolonged environmental conditions consistent with culture shock, was a key part of it all.
As it turns out Aunt Louise had FVL as most likely his dad and grandfather, and two distance aunts, and the more he learned about FVL the more he learned about his family.
Natale is the oldest of four sons, and his youngest brother, Nicholas, has just been confirmed with FVL.
The blood disorder’s historical significance in Natale’s family gave it a different kind of name from The Beast as he called it.
The Caliendo Curse.
Natale had more clots soonafter and landed on the blood thinner Coumadin. It made him weak, disoriented and cold. As Natale repeatedly states, the treatment is complicated; he is nowhere near in control of this ‘curse’. The meds are as strange as the disease they treat but he tries to learn from the experience, and while symptoms can get unpredictable, they never happen more than once.
While symptoms started at 28, it has only been four years since he was officially diagnosed with FVL.
The Beast still screams but Natale quotes: “I always give him the finger and I remind him that I own this body; he’s just renting.
“Sorry sucker, I’m still here, I’m still walking and I am still attached to all my limbs.”
Factor V Leiden Thrombophilia has teeth but it can be reduced to manageable conditions if the treatment is consistent and properly monitored.

*Natale says his relationship with his son is stronger than ever now and sees him on a regular basis; the two are inseparable when together.

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Comments

  1. I love this guy!!!! It takes so much courage to work tirelessly against something so brutal as FVL and still bend over backwards to be a world class dad. Most guys including my own father would have walked away from his kid whether he was sick or not. I could only dream of having a dad like this

  2. wow…thank u zoe! it’s hard for so many who grew up without dads but all i can say is that in these times, a father with fvl has 2 things to live with…pain and fear. what he doesn’t have is choice…i’m not suggesting it’s anybody’s fault, it just is. if your dad is out there, i’m sure he’s waiting for you to pick up the phone…

    do you have fvl?

    natale c.

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