disability

Is There Any Decency Left?

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Six hours of sleep is not usually enough for my body to function properly. But, I was motivated to rise because it was Meals on Wheels Saturday.

I went to bed 2:15 in the morning following a long day. It began with me asking an able bodied woman to move her purse so I could sit it the handicapped section on the train. She merely slid it over so I sat on part of it the entire ride. I followed that with a frustrating day at work. Afterwards, I headed to a Ladies Night gathering.

I limped, cautiously, up three floors then a spiral staircase inside of my condition-worker/friend Ashley’s apartment to the rooftop. My neuropathy made the trek
dangerous but when I got the top I knew the risk was worth it. I was in a grass covered oasis. The sun went down, her table top fireplace shined bright, wine was poured, snacks were eaten and stories were told. Before I knew it, it was after 11 pm.

The Mets game was over by the time I arrived at NY Penn Station. I moved around on tingling feet trying to escape from screaming, pushing, obnoxious drunks for a half an hour until my train was announced.

I wanted my long day to end so I decided to take a cab when I got to Newark. Two African cab drivers began speaking to each other. Then, one of them shouted, “You pay ten dollars.”

“Ah no! The law says you’re supposed to run your meter to determine the fare. I’ve taken a cab before and its six dollars.”
“You pay ten or no cab.”
“No cab.”

I waited the half hour for the next light rail train at 1:15 then I walked home, wondering if I’d oversleep. I didn’t. I woke up thinking that the woman on train, the drunks and the cab drivers made me yearn for more decency. So I decided to project the behaviors I wanted to be surrounded by like compassion and generosity. I happily delivered meals to seniors then my mother I filled book bags for homeless children.

#MealsOnWheels #DisneyVoluntears #Newark #NJTransit #Mets #disability #neuropathy #autoimmunedisease #chronicpain #chronicillness #BackToSchool

The People In Your Neighborhood

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Rain was falling lightly as I walked the quarter mile to my townhouse in Newark from the light rail. I was mentally and physically exhausted. A huge workload combined with the stresses of operating a new writing and editing system with glitches in a high energy newsroom wore me out. Add to that my ongoing health sagas (getting an analysis of the lumps in my chest, refilling my medications and booking doctors appointments) and I was ready to eat dinner and go to bed.

I was climbing the nearly dozen stairs to my front door while balancing my work bag, cane and an umbrella when an unmarked white van pulled up. A man emerged carrying a box. He flashed an awkward smile and walked up my neighbor Monica’s stairs.

“She’s not home,” I shouted.

“I have two boxes for her,” he replied.

“Give them to me. I don’t want to get wet. Besides, I know she needs them.”

I carried them inside then sent her a text.

The day before, she and I talked about checking on some of the elderly neighbors in our cul de sac. We’d both been more vigilant since one person died in her home at Christmas time and wasn’t found for a couple of days. Monica and I always check on each other. We have for years. In fact, we met when she saw and ambulance pull up outside my house. She asked if I was alone and needed help. I didn’t that day but we exchanged numbers. We’ve been looking out for each other ever since.

As I waited for Monica’s reply to my text, I wondered if other people are close to their neighbors. The thought reminded me of a song I first heard on Sesame Street, “Who are the people in your neighborhood?” Do you know?

#neighbors #peopleinyourneighborhood #sesamestreet #newark #tvnews #editing #writing #autoimmunedisease #chronicpain #chronicillness #disability

Drying A Stranger’s Tears

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I placed my lunch on the counter while talking to my co-worker Jenna about our first few hours using Dalet, a new writing/editing program. I was so preoccupied venting my frustrations and concerns I hadn’t even looked around me. I was fumbling with my cane and searching through my wallet for my value points card when I heard Jenna ask our regular cashier, Maria, if she was okay.

“What’s wrong?” Jenna continued. “Can we help?”

“I can’t talk about it but I could use a hug.”

Instantly, I was uncomfortable. I see Maria every day but I don’t know her. We exchange jokes and pleasantries but I don’t know her last name or where she lives. I’m also generally uncomfortable with affection. But, her pain was palatable. She tried to dry her tears but couldn’t stop them from flowing. Before I knew it she leaned forward and Jenna and I reached out her.

She wiped the water from her eyes as Jenna walked away. Then, Maria turned to me and apologized for needing comfort.

“Don’t be sorry,” I said. “You made our day. We were doubting if we’ve been doing anything well enough all day. Now, we know we’ve done something right. We came here, we saw you, and we made you smile. And, you know us, we’ll do anything to get a break from doing work. But, you should know I only give one hug a year to my friends. You’ve used yours up.”

Maria finally smiled then laughed.

#randomactofkindness #stranger #hug #chronicillness #chronicpain #lunch #disability #autoimmunedisease

 

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

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

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