Autoimmune Disease

Prepared For Anything

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If living with a chronic illness has taught me anything, it’s that I always have to be prepared. I’ve been so ill at times that I’ve been forced to think about getting my affairs in order: a will, insurance, health proxy, and a power of attorney. The reality that could sudden fall ill has also made me stay on top of laundry, house straightening, grocery shopping, and emergency phone lists. My obsession with preparedness is now helping me in every area of my life.

Yesterday, I was still reeling from the fact that Actress/Singer/Writer @ritawilson and her husband actor @tomhanks acknowledged my prior post thanking Ms. Wilson for selecting my essay for her Voices of Strength series in the Huffington Post when I got a direct message from a former colleague. She said she was hosting on a radio show on WVOX 1460 am which will be livestreamed from 3-4 pm on Monday (today) with a well-known female author. She said she thought my blog posts might make a good addition to the broadcast. She also invited me to call in to be a part of the conversation. I told her that despite a busy day at work with coverage of the eclipse, the president’s speech on Afghanistan, the hunt for the Spain terror attacker and the US navy accident, I’m ready to participate and I will.

Who knows where this will lead. My essay in the Huffington Post led to an opportunity to be a regular contributor and some promoted posts. My book resulted in radio shows and positive reviews. So, maybe someone will hear my words on wvox.com and be inspired, changed or it will push my writing career to another level. No matter what I am ready for whatever comes next. #chronicillness #chronicpain #disability #autoimmunedisease @wvoxradio #memoirs #invisibleillness

No Nonsense, No Excuses

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Every bone in my left foot, knee and spine hurt as I made my way home. I was tired and still rattled by the news that my longtime co-worker/friend abruptly stepped down from the anchor desk.

I’d arrived at work in time for our morning show producer, Tyler, to tell me that Lori was still inside. I’d missed her goodbye speech and cake but I was determined to say farewell to her in person. Lori was standing, talking to other people when I arrived in the newsroom. I waited to tell her that I wished best and that I knew she would continue to honor her father’s legacy.

Lori turned to me and said, “I’ve told you before. You are one of the strongest people I know.”

I forgot back tears as I embraced her. I tried not to think about what her loss meant to me for the rest of the day. But, suppressing my feelings left me mentally exhausted by 6:15. I couldn’t wait to get home. My body made getting there difficult.

I dragged myself the final block to my townhouse. Then, I decided to stop at the mailbox. There was package wedged in it with a name on it that was unknown to me. It was clear the package was for me because my entire first name was written on it, not just Nika.

16 stairs later I ripped my shoes off and leaned on the kitchen counter while I opened the package. Inside was a t-shirt that read “No nonsense. No excuses” in purple glitter; that’s the name I gave to my Autoimmune Walk NYC team. My cousin Darcelle told me she had a shirt made for me to wear but I’d forgotten. I was so thrilled to see it, I didn’t feel the pain as I walked into the living room and slipped it on.

I stared at myself in the mirror and repeated, “no nonsense will deter me from making it through work or anything else every day. And, there are no excuses for not living my best life by showing the strength others see in me.”

#LoriStokes #tvnews #noexcuses #nononsense #autoimmunewalk #chronicpain #chronicillness #autoimmunedisease #igg4

A Career To Remember

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I was in the middle of doing a cut sheet for an insert on Charles Schumer’s fight to restore mandatory sleep apnea testing for Metro-North engineers and writing and editing Vo Sot Vo about the British model who claimed to be kidnapped when the camera crew arrived. I’d reluctantly agreed to take a photo and provide an on camera quote as part of my company’s celebration of my 20 year anniversary.

I’d chosen a job behind the scenes decades ago, in part, because I can’t stand the sound of my voice on tape and doing hair and makeup aren’t things I enjoy doing. Yet, I flat ironed my hair for the occasion. Unfortunately, the moisture in the air took out the curls and made it puff up.

I placed my cane behind the assignment desk and waited for instructions. When the lights were turned on and the camera was pointing towards me I almost decided to cancel.

“How does it feel knowing you’ve been here for 20 years?” The producer asked.

I paused and and replied, “Do you really want me to answer that?”

“I can ask you something else,” the coordinator said. “What’s the best part of spending 20 years with the company?”

I responded as I looked around my corner of the newsroom at all the faces. “I’ll answer.”

I thought for a second and said, “The years have flown by. It’s hard to believe it’s been 20 years; most of my adult working life. I’ve had steady work for the last two decades covering world events. I’ve written about fires, births, deaths, wars, trials and elections. I’ve learned about budgets, foreign affairs and health breakthroughs. But, the job isn’t what I’ll remember most; the people are unforgettable. The people make the long hours, the irritation, and the writer’s cramps worth it. I didn’t intend to be in the news business this long now I don’t know what I’ll do next.”

#tvnews #journalism #disability #chronicillness #chronicpain #autoimmunedisease #nomakeup #anniversary

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