​Strange times are upon us. A virus is ravaging mankind, and our generation is experiencing a phenomenon that most of us could never have imagined. The advent of COVID-19 has shown us the best and worst of who we are at heart as a collective society. On one hand, people are hoarding food and necessary supplies with complete disregard for the needs of others, as though they’ll never be available again. I mean… no toilet paper anywhere? Really, people? Certain people – let’s be as kind as we can and call them selfish bastards – are buying up items like masks, hand sanitizer and disinfectant so they can sell them privately to make a profit. There’s a special place in hell for people like that, and I’m sure karma will take good care of them.

There IS an "on the other hand" coming, I promise...
 
There’s a lot you can say about our present state of affairs, without even getting into the economy or politics:  we saw this coming; we watched what happened across the globe and did nothing; we treated it like someone else’s problem; the sensationalistic media stirred up panic, while the government downplayed the severity, lied about the numbers and failed to protect us in time; Trump bumbled everything every step of the way, as expected; and by the time the reality of awareness dawned like a swift kick in the balls, too many people didn’t take the threat seriously enough.
 
You can say all of this and more, and you’d be correct on all counts. And, for the record, as COVID-19 finally recedes in other countries, the US now has more documented cases than any of them. Yay, us.
 
But here we are, for better or worse. And I, for one, am hoping for better. (Here comes that “on the other hand…”) Because despite what’s bad right now, we’re experiencing a sea-change in our society. There is a new reality dawning and it’s up to us to embrace it or fall back into our usual business of ignoring what matters most.
 
The new reality isn’t Social Distancing. To be honest, I hate the term because what’s happening is just the opposite. People are actually coming together in new and creative ways – realizing that, once deprived of it by necessity rather than choice, the need for human connection is greater now than ever before.
 
Say what you will about social media, text messaging and people hiding in their phones and laptops rather than participating in the world. Truth is, thanks to technology, we have the ability and potential to connect on a more personal level now than we have in decades – if we put it to proper use. And that’s exactly what I’m seeing. People are embracing it, using it not to distance themselves, but to bring everyone in closer.
 
It’s not “social distancing” that’s the key to survival… it’s what I like to think of as Virtual Togetherness. Social distancing implies hiding away from society. Virtual Togetherness implies coming together, reconnecting with loved ones, caring for others and embracing what matters most in this world.
 
There’s a different feeling bubbling up from under the fear of illness. And while you won’t see anyone hugging in the streets, people are doing what they can to connect, checking on neighbors and friends, getting outdoors and talking over fences, calling, texting, video conferencing and connecting via social media. Families are spending more time together than ever before. People are finding new ways to employ their skills – sewing masks to donate to a medical community in desperate need – getting their children involved by teaching them to sew and so on (pun intended).
 
I saw a piece on the local news about a photographer donating her time to take family photos – from a distance of course – in order to capture moments of unprecedented togetherness at home. She’s doing what she loves to spread a little joy. She does it for free and only asks that the family consider donations to a cause of their choice. It’s incredibly heartwarming, and I can’t help but think how much stronger we’d be as a society if we all embraced and held onto this mindset, not just in times of adversity, but as part of being a socially-responsible human long after the specter of COVID-19 fades.
 
For reasons I won't get into here, my husband and I have opted to stay home far longer than has been mandated. We do it to protect his health, and we’re doing what we can to have fun. We take the dog on more walks. We’re participating in virtual happy hours. We’re visiting family and talking to each other through the windows, leaving plenty of space in between, and it does our hearts good to hear their voices and see them smile. None of it makes us feel distant. In fact, it’s quite the opposite. Because – virtual or otherwise – it’s togetherness. And it has brought about a renewed sense of the value of our lives and everyone we hold dear. I hope it does the same for you.
 
Peace, y’all. Practice Virtual Togetherness, and spread love and kindness, not COVID-19.

A while back, I wrote a personal essay for one of my writing workshops. The instructor encouraged me to submit it to the University's literary journal, which is published annually. I decided to go for it with very little expectation that it would be selected. They receive hundreds of submissions, including personal essays, short stories, photography and poetry. They only choose thirty for publication.

For months, I waited to hear if my story made the cut. I had all but forgotten about it when I received an email saying that it had. Needless to say, I was thrilled. And a bit nervous. This very personal piece would now be out there for a lot of people to read. But, it's about a subject--and a man--that's very dear to my heart. And, I've made it a personal mission to raise awareness of it in any way I can.

A lot of people have been asking me if they could read Eye Witness. I decided to publish it to my blog for anyone who might be interested. And to Bob...thanks, babe, for allowing me to share your story. You're amazing.


Eye Witness
By Janice Capasso
October 21, 2012

Thoreau asked, “Could a greater miracle take place than for us to look through each other’s eyes for an instant?” It reminds me how little we really know of another’s suffering. Over the years, I have learned never to take someone else’s experiences for granted and never to casually say, “I know how you feel.”

I have been blessed with a relationship like no other I’ve ever experienced. On the surface, it would be fair for anyone to ask why I would stay with someone I know will leave me. My answer is simple:  I’ve learned that I’d rather enjoy the time I have with him, and never waste a moment, than live without him because I’m too afraid to take the journey.

Bob has Von Hippel-Lindau (VHL)—a rare disease, affecting one in 30,000. It causes hemangioblastomas (blood vessel tumors) of the brain, spinal cord, and eye. People with VHL are also at risk for clear cell renal cell carcinoma (a specific type of kidney cancer), and tumors of the adrenal gland. VHL is insidious, chipping away at its victims, who lead seemingly normal lives until the next surgery to excise tumors before they grow large enough to metastasize.

Bob’s first surgery, to remove a tumor wrapped around his optic nerve, left him blind in his right eye. If not for the nine-inch scar that arcs from the peak of his forehead to a point just in front of his ear, no one would know. He lives his life like he doesn’t have a care in the world. 

At the time this was first written, we had been through two kidney surgeries—one to remove 28 tumors, the second to remove 41, ranging in size from the head of a pin to three millimeters. He has since had a third. I’ve dressed his wounds and emptied collection bags filled with fluid from drainage tubes. I’ve stayed awake with him as he struggled through pain-filled, drug-induced nightmares. None of it qualified me as having stood in his shoes.

With all of his health concerns, we never thought we would have to worry about his blind eye. Yet, over the years, he struggled through numerous painful laser excisions to remove small tumors that developed from time to time.

It was something we came to accept as a fact of his life, until the day I looked at him and noticed that his pupil was almost fully dilated, the blackness almost devouring the spectacular ice blue I loved. He tried to deny anything was wrong, but when I found him downstairs in the middle of the night—his head in his hands, nearly delirious with pain—I knew he was in trouble.

The diagnosis of neovascular glaucoma was almost a relief. Normal eye pressure ranges from 10-21 mm Hg—Bob’s was off the charts at 53. The intensity of the fluid build-up in his eye was causing unbearable pain and, while it wasn’t the tumor we had feared, the treatment options were no less daunting. He could try to manage the pain with eye drops and painkillers, or the eye could be removed.

To me, the choice was clear—why not end the suffering and remove it when, in Bob’s own words, “the damn thing doesn’t work anyway.” But it wasn’t my choice to make. Enucleation of his eye posed a 0.01 percent chance of sympathetic ophthalmia—an autoimmune inflammatory response that, in the worst case, could result in blindness in his good eye. No matter how slight, it was a risk he wasn’t ready to take.

For three years, Bob vacillated between good days and bad. Every time the pain broke through, the medications were increased until he was putting four different drops in his eye, four times each day. He resented the drops, hated the way his eye looked and grew tired of people asking him what was wrong.

Eventually, the pain became impossible to manage and, once again, I found him downstairs at 4:30 in the morning—this time contemplating whether or not to stick a fork in his eye and yank it out himself. “Babe,” he said, “the only thing that stopped me was the thought of infection. Otherwise I kept telling myself it couldn’t possibly hurt any more than it already does.” He agreed to have the surgeon do it instead.

The four-hour surgery went beautifully. The eye was removed, replaced with an implant to which the eye muscles were attached. As long as the healing process went smoothly, the prosthetic eye he would receive in four weeks would have a decent range of motion. I didn’t care if it could whistle show tunes. All that mattered to me was seeing Bob after the surgery—asking for the peanut butter and graham crackers he had been promised earlier—completely pain free.

After four weeks of recovery, it was time for the creation of his prosthetic eye—a process which was nothing short of fascinating. The ocularists at Jahrling Ocular Prosthetics in Boston are artists in the truest sense of the word. I watched in awe, taking photo after photo, as it all unfolded before me—six steps during which numerous checks are made to match iris and scleral color and adjust sizing.

It begins with a white molding gel injected into the eye socket to capture the initial shape. The technician then creates a wax mold that will be used to check sizing before the acrylic prosthetic is made. In the meantime, a clear acrylic disc is painted—beginning with the darkest color first—then built, layer-upon-layer, with lighter and lighter striations until it perfectly matches the iris of his left eye. When completed, this disc is attached to the scleral prosthetic by a post.

In the final steps, thin red threads are added to simulate blood vessels in the eye and scleral tinting is completed. Clear acrylic is placed over the entire surface and the prosthetic is cured for several hours. The entire process is completed in two phases over the course of eight hours—one day that ended a three-year journey for a man who went in with one eye and walked out with two.

I’m not afraid of loss. I’ve experienced it enough to embrace its lessons, to appreciate the moments that make up a full and rewarding life. Bob won’t leave me because he’s bored; he won’t leave me for another woman. It won’t be anything that superficial. Someday, I will lose him because VHL will eventually win the war if the genetic anomaly can’t be reversed.  Despite every hard fought battle, the day may come when even the most skilled surgeons can no longer put him back together.

We won’t give up easily. This entire experience has become a metaphor for our lives together—a determination to continue looking forward. Through Bob’s eyes, I have witnessed life-changing experiences, and—while I can never say I have felt his pain—together we share the same anguish, fear, uncertainty and hope.

There’s a song called Glitter In the Air that asks, “Have you ever looked fear in the face and said, I just don’t care?” We have.