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I Know What Pain Means: On Chronic Pain and Missing Carnival This Year

When I was two, my parents dropped me off with my grandparents in India and took my older brother on a trip to the United States and that other nation-state known as Disneyland. I had a wonderful time with my Thatha and Patti, visiting old temples all over South India and being treated like mini-royalty by all of their friends and relatives. At the end of the summer, our little family reunited in Kuwait and my parents invited a few friends over to look at slideshows and film reels from their trip. As the pictures flipped across our off-white living room wall, I could not help but notice that I was not in a single one of them. Adventureland? No. Tomorrowland. No. Mickey Mouse“s 50th birthday? Nope nope nope. In fact, Mom told me I was inconsolable and demanded to know my whereabouts in each and every image. How could I – the most important person in my world and the darling of my family – not have been with said family during a really important trip to a very important place? Foreseeing that “You spent a great time with your grandparents, remember?” wasn’t going to cut it, the folks quickly decided to act on my memory loss. They told me that, in each photograph, I was standing in the back behind them / Donald Duck / bushes / statue / water cooler. “You’re back there.”

In those years, Dad would feed me meals as much as he could. Days after the Disneyland show ‘n’ tell, I would receive spoonfuls of food and ask him details of what We did on Our trip to Disneyland. And he told me about the Jungle Safari Ride, except the animals in his version were alive. Lions, crocodiles, hippopotamuses, wonderful wild LIVE animals surrounded the boat! And then, in a singular stroke of genius, he concocted the story of my bravery in the face of these creatures: I stood at the front of the boat and yelled at each of the animals, and they feared me. “Get away, Lion!” “Get away, Crocodile!” “Get away, Hippopotamus!” And I gobbled it all up, along with the food Dad was trying to make me ingest.

Desperate father + gullible toddler = epic life stories. I was two. I wanted to belong to my family. I wanted to be there.

This Lundi Gras, I sit in an armchair that is not located in the city of New Orleans, dictating these words into a microphone (and correcting the tool when it doesn’t understand words like “Thatha” and “Lundi Gras”). At the end of last year, I was diagnosed with acute disc herniation at three cervical (neck) levels, with disc degenerative disease, stenosis and osteoarthritis at the C6-C7 level. An anterior cervical discectomy and fusion will take place in a couple of weeks followed by rest and physical therapy. Will I have a cadaver bone, titanium plate and screws placed in the space where my disc material once was, remain home-bound for almost two weeks after, and have problems swallowing and speaking for some time after surgery? Yes. Do I want to go through with this and actually look forward to surgery? Most definitely.

Let me yell as if I were at an animatronic crocodile: MOST DEFINITELY.

Chronic pain is real. As it worsens, the impact that it has on the body’s ability to do even the simplest things, much less travel, exercise, sleep and take on other forms of medical treatment, is immeasurable. But, we don’t necessarily feel it: Humans are historically bad at acknowledging what we can’t see, the body adjusts, it bargains, wheedles and shifts, and then pain becomes the new normal. Until it realizes for a small instant in time what it was once like not to live with pain. A cortisone shot administered a few weeks back did its job for 36 hours – a glorious day and a half in which I thought I was rescued and all was possible. It made me see that it wasn’t just the last couple of months, but almost two years that I’ve lived like this, slowly degenerating into pain, electric shocks down my arm, inflammation, loss of feeling and muscle weakness, all culminating in the fall off a bicycle onto my weakened left side that forced me to see a doctor. For a brief dexamethasone-filled moment, the world wasn’t such a bleak place. Those of you who know me know that I’m an anxious person, but depression? That was a completely alien beast till now. Yeah, The Pain makes you sad, grouchy, reclusive and a whole bunch of other miserable things that you don’t understand because you don’t know that it is The Pain and, even if you do, you are stronger than The Pain and just need to power through it. Even the malaise I can handle, but The Pain began to impact my ability to think clearly and make decisions and to perform work at the high standards to which I hold myself. When I stop functioning as me (and start referring to it as The Pain), it’s time.

I decorated the house, watched the Krewe du Vieux and Krewe Delusion parades for a change and pretended to make a mask before it was time to throw in the towel (with the good arm). The Mardi Gras Mathematics was inscrutable: Neck cannot hold more than one strand of good beads, left arm cannot go over head for more than four seconds, I wince when anything/anyone even grazes my left arm, a nap is all I want and, most importantly, NO NEW MASK and NO CLEVER COSTUME. Oh, and did I mention no anti-inflammatories and painkillers until after the surgery? Therefore, Mardi Gras 2016. To make me feel better, a friend in New Orleans offered, “It will be here next year, some other time.” That’s just it. Will it? New Orleans is a lot like life: high highs, low lows and absolutely not guaranteed at all. Have we forgotten already? Don’t we remember ten years ago when we kissed the freshly-drained parade routes? It is our privilege to be there.

In a recent fit of self-pity, I snarled at D not to send me any pictures from New Orleans. “I don’t want to see any of them because I won’t be in them.” D smiled and said: “Oh, come on, it’ll be like Disneyland. You’ll be in the back!”

So, I close my eyes and make believe I am in New Orleans, all dressed up on the parade route and screaming, “Get away, drunk tourist! Get away, smelly hipster! Get away, neutral-ground-hogging Chad!” I am a New Orleanian. I want to belong to my family. I want to be there.


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