Something Inside So Strong

ven knowing that the darkest hour is just before the dawn, there are still a lot of frustrated and irate people out there.

Come March 12th, it’s going to be a full 12 months of lockdowns, travel restrictions, masks, online schooling, no real social life, and Zooms without a view.

Is it any wonder cabin fever has kicked in…?

Much of our old everyday, pre-Covid lives has been taken away from us, and it may be some time yet before that footloose and mask-free life returns.  Nonetheless, it’s worth taking a step back and just being thankful for what we do have. 

After all, in the words of Saint Joni of Mitchell, you don’t know what you’ve got till it’s gone.

It was something that struck us when we read a post by Sabrina Taglienti on November 11th last year, all about her father, Benny, who was diagnosed with Motor Neuron Disease in August, 2017. Three years and three months later, this progressive attack on Benny’s nervous system had taken much of his freedom and independence away.

Which inspired the following from his daughter…

We were carefree, and you thought me how to be carefree. And to enjoy life to the fullest. To work when you have to, but to dance and drink and laugh when you can.

You thought me everything I know. Some days I live; most days I live on autopilot. We get through each day as best we can but, in reality, it’s shit. This disease is shit, it’s stripped away the future I thought we would have, but we were lucky to have such memories. Such great, amazing memories, a relationship some people never get to have with their dads…

What I’d do for one more day like that with you, with not a worry. Most people write these posts when it’s too late. It’s a struggle. Motor Neuron Disease is simply the worst thing I’ve came into contact with in my life.

And only the people that are diagnosed know the full severity. We are just hurt spectators, broken, looking at the ones we love. It’s unbelievable though, seeing how many people love my dad, all these friends who care for him like they were family members.

It shows what a hero the man is. Paps, you’re the best!

Getting in touch with Benny today, what you notice first and foremost is that, despite his body’s own devastating lockdown over the past three and a half years, the man’s lust for life has not waned. Unable to venture outside much anymore, given that his lungs have weakened to the point that he needs to be on his ventilator just to be breathe properly, the man still counts his blessings.

“I just appreciate every little thing that happens each day,” he says. “The carers, my grandchildren, my family, all coming in each day to see me.

“Family is always number one – always there to help one another. And so many friends too have helped me out…”

How could you not help a beautiful person like Benny Taglienti? Right from the very start, fundraisers were organised, and adaptations to Benny’s Kilcoole home were quickly sorted.

Splitting much of his waking hours watching his favourite TV shows – The Chase and Tipping Point being high on the current list – and witnessing his grandchildren, Julian and Angelo, grow bigger and stronger by the day, before Benny takes his afternoon nap, we ask him what the past few years have thought him about life.

“Because you never know what tomorrow will bring,” he says, after a pause, “never take your life for granted…”

Benny Taglienti 2021 portrait shots by Pawel Krzeminski. Now, go find out more about the Joker’s king here.