Kid At Heart

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I was running fifteen minutes late when I arrived at 66th Street for the Disney Voluntears Lincoln Center Outdoors event. My mother was the first to greet me as I struggled up the stairs towards the gift giveaway table.

My pace slowed as I saw the young girls jumping into and out of the Double Dutch ropes. The “Cupid Shuffle” was blaring, seemingly in beat with the foot steps striking the ground. It reminded me of the countless hours I spent turning rope on Corsa Avenue and Hicks Street in the Bronx, in gym class and in my parents’ backyard in Scarsdale in Westchester County at family barbecues. The sound of laughter was intoxicating; it made me feel like a kid again.

As soon as I arrived at my “work” station, I thought I’d have to behave like a responsible adult. But, I was wrong. We ran the games that allowed children and adults to earn movies and water bottles. One by one people walked up our wheel and answered questions like how many hours of sleep should I child have? And How much sugar in teaspoons is in a can of soda?

There were activities too. People spun to see if they’d have to do jumping jacks, jump rope backwards, and complete their age I. I watched even senior citizens took turns to recapture their youth. My mother and I were so engrossed in what we were doing we even skipped lunch. My mother ignored her hip pain as did I. I also shook off the pain in my lower back and feet. The hours flew by and before we knew it was time to pack up.

We gave away gifts but we got several in return. We took with us the smiles, the life stories, the languages from around the world we heard and the memories of adults who challenge themselves to remember a time in their lives that was carefree. I needed to remember when my life wasn’t so difficult.

#childhood #TheBronx #DoubleDutch #Scarsdale #disability #ChronicPain #ChronicIllness #DisneyVoluntear #volunteering #AutoimmuneDisease #igg4 #LincolnCenter

Get It Off My Chest

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I’m don’t mince words often and I’m rarely out of them. If I have something to say I get it off my chest right. But, I was swamped at work when the results of my breast ultrasound came in. I glanced down at my iPhone 7 while the message from my Ob/GYN was being transcribed. It said, “your results are in. The radiologist wants to see you again in six months. I’m preparing your referral. Thank you.” Immediately, all words escaped me.

I saw the four hypoechoic nodules with my own eyes during my scan. They were the dark circles the technician paused over, measured, snapped images of then refused to discuss with me. Yet, I kept hoping I was wrong; that they were so insignificant they didn’t warrant being mentioned in a report.

I immediately signed on to the Lenox Hill Radiology portal and pulled up my report. It described each lump by height and width, as well distance from my nipple. There were two in the left breast and two in the right. On the bottom of the report, the radiologist said they were likely benign but recommended monitoring.

“Likely? What the hell does that mean? I’m supposed to wait six months to find out if some of kind of cancer is present? It may be okay with the doctor to watch and wait, but can I live with that? At least when Lymphoma was suspected I had the six surgical biopsies and I knew what I was facing. I may need a second option or a biopsy just to be sure,” I mumbled to myself. “I’ve spent most of my life since puberty trying to hide my double chest. Now, if the images change they could be gone. I don’t have much of a figure without them. I think I’d actually be sad to see my breasts go.”

I grabbed my cane, subtly rose from my chair and walked over to the printer to collect a copy of the radiology report. I didn’t tell anyone around me what was bugging me. I couldn’t figure out what to say so I said nothing other to answer questions about the stories we were writing for 5:30 and 6 pm newscasts. I completed my work and I laughed just like everyone instead of crying. And, on the way I home I wrote down my feeling to get them out.

#ultrasound #mammogram #chronicillness #chronicpain #disability #lymphoma #tvnews #radiology

Always Acting

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Always Acting

I sat in the audience in awe as my “stepson” transformed in to Charlie in the musical “Willie Wonka And The Chocolate Factory.” He was selected to star in at by Arts in Connecticut, the Summer program he was enrolled in by his mom. For a long time, he expressed interest in being an actor. However, his ability to emote, to change his stance, and to conquer his shyness dazzled me.

As his blended family walked down to congratulate him, I wondered if he acts sometimes when he’s not in the stage. If pretending during uncomfortable interactions between us helped him hone his skills.

Normally, I don’t think of myself as an actor in any way. In fact, my fiancé often says I swing my “truths” with a sledgehammer. Yet, standing there with him I realized I have feigned an interest in or affection for each others for his sake. I have also smiled, laughed or distracted my loved ones in other ways from the pain, worry or annoyance that riddles my life each day because my chronic illness.

I tried to shake my thoughts as we walked around near Yale and ate lunch before we headed to the mall to do another escape room. We chose Zombie attack room. It was filled with medical equipment including vials, a blood pressure cuff, needles and an IV. Instead of solving clues, I put my cane down and I tested out the items as I reflected on my medical woes and efforts to hide them. When the time ran out and it was time to take the picture, I found the perfect prop, a mask.

 

It made me think of words by Paul Laurence Dunbar, “We Wear The Mask:”

“We smile, but, O great Christ, our cries
To thee from tortured souls arise.
We sing, but oh the clay is vile
Beneath our feet, and long the mile;
But let the world dream otherwise,
We wear the mask!”

#mask #escaperoom #acting #chronicillness #chronicpain #stepson #ArtsinCT #WillieWonka #igg4 #disability #blendedfamily #yale #backpain

Under The Surface

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Her name was Colleen. We’d only met a few minutes before she asked me to open my robe and expose my chest. After that she was silent other than to tell me to, “lay on your back with your eyes towards the ceiling.”

She used a scanner to spread warm gel on the right side of my chest. Then, she began peering inside me to see, what if anything, looked out of place. Moments later, she found something.I felt her stop the scanner and heard clicking on the keyboard. I glanced over and I saw it.

There was a dark circle on the upper left side of the screen. She used the tool to measure it, zoom in and then there was more clicking. She went back to that spot and one other on the right side several times before it was time to switch. Colleen examined the left side too. But, either she found nothing remarkable or I didn’t notice. Afterwards, I was free to go; allowed to leave to contempt the possible results.

I was on my way back to my office with fear running through me when my college friend/former roommate texted me to say that she and her son were in the city and they wanted to stop by. Years, distance and illness kept us from seeing each other often but today the timing was perfect.

My heart leapt and my concern about the test dissipated. All I thought about was being in the moment, catching up, showing them around the tv station where I work and absorbing the love from them.

#mammogram #breastcancer #friendship #disability #chronicillness #chronicpain #igg4 #nyc #ultrasound #roommate #tvnews

Eating My Feelings

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I tossed and turned worrying about the reason my doctor required a 3D mammogram in addition to a traditional one. She said it was impossible to see through my dense tissue to clearly make whether I actually had a lump or not. I’d never had that type of imaging before but I was assured that this was the one of the latest technologies that would help me avoid something more invasive.

I took a cab over to the imaging center at lunch and I was immediately called in. I put on nipple markers that looked like pasties and stepped into a machine. I was pulled, pushed and then smashed before my scan was over. Then, the technician asked me to stop by the admitting desk to schedule an appointment for an ultrasound.

Wtf? I thought. What else do they red to do to tell me I’m okay.

I booked an appointment for the following Thursday and headed out into the rain.

Even God is crying, I thought as I bowed my head. He knows how much I’ve gone through and continue to every day. I guess He never said the road would be easy.

As soon as I looked up I saw a Dunkin Donuts/ Baskin Robbins. I took it as a sign. I cautiously made my way over there as my cane slid in the puddles and I picked out a carton of my favorite ice cream: Gold Medal Ribbon. Tonight, I will pray then eat this, I thought. I’ll fall asleep and tomorrow will be a new day.

I was smiling until I realized I had no way to get the ice cream back to New Jersey without it melting. When I returned to work I mentioned my problem to my friend Sixto. He took his dirty Tupperware out of his lunch bag and handed the bag to me.

“This ice should keep it cold,” he said.

He’s helped me lot of times over the years but this time he may have saved my sanity.

#food #nyc #breastcancer #cane #disability #autoimmunedisease #chronicillness #chronicpain #igg4 #baskinrobbins #dunkindonuts #eatmyfeelings

View From The Rooftop

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I couldn’t see the bustling NYC streets from the rooftop at the Empire Hotel, which is near Lincoln Center. I heard the wind whipping, glass clinking, laughter and friendly conversation. I’d ventured just blocks from my workplace after a stressful day writing more stories than I thought I could complete to celebrate Ashley’s 30th birthday.

She’d arranged her own party at the bar on top of a hotel I’d stayed at countless times to cover the news of the day: Superstorm Sandy, snow storms, etc. But, I’d never gone up to that floor before. Today a ventured to a “new place” to cheer Ashley.

A talented newcomer to the TV station, Ashley quickly became a friend. Her brains and talent are impossible to ignore. She also genuinely cares about the service we provide to the public and goes above and beyond to deliver it even when she’s not compensated enough for her efforts.

I didn’t notice the hours flew by as I talked to other co-workers who often don’t get time to get to know from 9:30 to 6:15. I learned and I shared. I soaked up the energy from the endless party. I didn’t think once about my cane, my evening pills, the pain in my hips or my fatigue. I was simply a New Yorker out having fun. Ashley inadvertently gave me a gift at her birthday party. Thank you Ashley. Happy Birthday.

#birthday #lincolncenter #empirehotel #nyc #tvnews #disability #chronicillness #chronicpain #autoimmunedisease

The Need To Escape

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I woke up after just six hours of sleep and thought I’m not going to be able to function today. My eyes burned and my head throbbed as I glanced at my phone. Just for one day I wish I could escape this body, I thought.

I swallowed a pill and used my legs, which had a tingling sensation from the knees down, to stumble to the bathroom. As water washed over me, I mumbled my morning prayers. I asked the aching in my joints and the pins and needles in my calf to end. But, it didn’t.

So, I got back to my bed and did Yoga stretching. Finally, I felt okay. Unfortunately that changed as my fiancé and I made the 1 1/2 hour long drive to CT to pick up his son.

We could both barely stand when we got there but the smile on that child’s face upon seeing us made it worth it. We hurried off to Chick-Fil-A for lunch in North Haven. A worker came up and asked about our visit, cracked some jokes, and made us feel as if we were in someone’s home. The banter relaxed me as I took more meds.

When we arrived at our house a few exits away, yard work had to be done. I clipped bushes with a hand held hedge trimmer. The whole time, the rotator cuffs in both arms felt like they would give out. I kept thinking, I wish I could escape this life; everything is so hard for me.

At around 6:45 we decided to head to the mall. We were about to try to escape from Alcatraz.

50 minutes were on the clock when the door to our prison cell was locked. My fiancé, his son and I figured out the first clue easily. Then, my ” stepson” found a box with the second clue. My fiancé solved it and we were on to the third with forty minutes to spare. But, we hit a wall. Nearly 17 minutes and a mini meltdown passed before we got into the box that gave us the code to find the final clue. We were free wth six and a half minutes left.

On the ride to dinner, I thought, I’ve often wanted to escape from paying my bills, my job, my body, and my chaotic life. Today, I learned from an escape room that there are no easy exits. I may always require help, a plan and a drive keep me from giving up. But, with the love of family anything is possible.

#NeedToEscape #ChronicIllness #ChronicPain #Disability #AutoimmuneDisease #CT #NJ #ChickFilA #EscapeRoom