My Chronic Illness Made Me A Superhero

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I’m 5’9” tall, 155 pounds, dark-skinned with an obvious limp and a cane. So, how can I be invisible? I thought it was impossible for me not to be noticed but I’m treated like I’m hard to see by nearly everyone I pass on my commute.

I’m cut off at staircases, raced to the escalator or elevator, edged out of chairs in the handicapped/elderly section of the subway and commuter train and I’m often scrambling to stop a door from hitting me. Thankfully, my cane frequently acts as a door stopper. It does get kicked, stepped on and knocked down though. But I keep moving.

On the rare occasion that someone glances up from their phone and spots me, I get an awkward smile. Other people stare at me or feel bold enough to ask me, a perfect stranger, what’s wrong with me. Instead of seeing me as a whole person, those people only see the results of decades of living with an autoimmune disease.

Like a superhero in a comic book, I’ve chosen to see the condition I’ve been cursed with as a gift. I’ve turned my illness into my superpower. I use it to make people stop, be more considerate to the disabled and to learn more about autoimmune disease and chronic illness. I also show people that mental and spiritual strength can overcome any problem with the body. And, perhaps more importantly, I try to shine as a beacon for embracing the skin you are in, helping others who are less fortunate and using your talents to shine a light on injustices.


#chronicillness #chronicpain #injustice #Superpowers #Superhero #autoimmunedisease #igg4 #InvisibleIllness #disability #NYC

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Worth The Pain

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I was already tired when I reached the church on East 74th Street which was the starting point for our Meals on Wheels deliveries. I’d already walked, taken a bus, ridden NJ Transit, the new Second Avenue subway and walked three more blocks to get there. But, the journey was for a good cause and I was on time.

I entertained our youngest volunteers while my mother and I waited for our list of addresses and the food. Then, 15 minutes later it was time to head off into the streets again.


My mother and I made one delivery before we got to the two deliveries in the historic building, The Cherokee. I hadn’t been in a building like it. It had an open courtyard with apartments facing it from four separate staircases. Our stops were on the third and fourth floors of the walk up. My mother leaned on the railing to hold her up while she used her bad hip to climb. I relied on my cane.

“Bless you for doing this,” said our first client. “You’re walking with a bad leg and she’s walking with a stick. This is nice of you.”

“No matter what, you gotta keep moving, right?” replied my mother.

I agreed. We both crept down the stairs, clinging to the wall as watching out for each other. We finished the rest of our stops in pain but certain our sacrifice was absolutely worth it.

#disability #cane #chronicillness #chronicpain #invisibleillness #mealsonwheels #nyc #autoimmunedisease #spoonies


 

Bad Snap Judgement

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I dropped my wallet in NY Penn Station after the crush of people bumped me around like I was in a pinball machine. I used my ice hockey elbows to keep them at bay and to stop my cane from slipping down the stairs. But, there was so much chaos as I walked towards the train I didn’t notice I’d lost anything. Then, someone began shouting,”Miss.” I looked back, saw my wallet in a man’s hand and I said, “thank you.”

I’m sad to say I was shocked that I got my wallet back because I was standing near a line of homeless people. Tonight on my way home, I saw one of those displaced souls. She recognized me and said, “miss.” I thought she was mocking me until I recognized the voice. She had called out to me not the man.

The woman wanted nothing at all except somethings to read. She walked away and stood quietly browsing through a magazine and then a newspaper. She reaffirmed for me not to “judge a book by its cover.”

#nypennstation #nyc #homeless #disability #invisibleillness #spoonies #autoimmunedisease #chronicillness #chronicpain #dontjudgeabookbyitscover

Looking To The Future

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20 years have gone by as quickly as a wave in the ocean. I drifted into the world of TV to help a friend and ended up wading my way through nearly every position that exists. After keeping myself afloat in the business by being a jack of all trades, I finally found my calling as a writer.

I wanted the world to hear my voice through words. So, I expressed myself through my stories, show segments and specials. For two decades, I recorded and relayed information on nearly every major world event for one company. Today, as I arrived home my 20 year statue was waiting.

I don’t have another 20 years of snowstorms, missed holidays and long days of breaking news coverage in me. This is not because I’m not physically up to the task. I don’t want to miss out on the other parts of my life anymore. I also have more to say that won’t fit in a 20 second voiceover.

Yet, I look back on my career with fondness and I wonder what’s next for me? How will I make my mark on the world next and make a difference? I ask myself this a lot and as soon as I have the answer I will wade into my next 20 year adventure.

#journalism #tvnews #careerwomen #disability #chronicillness #autoimmunedisease #invisibleillness

Autoimmune Walk NYC

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My praise for Alka-Seltzer cold and sinus and its ability to suppress my cold symptoms enough so I could speak at the Autoimmune Walk NYC 2017 wasn’t caught on camera but the majority of my speech is here:

I can only hope that as I continue to share what I’ve learned will motivate others to find a way to cope with whatever obstacles are in their path.

#invisibleillness #autoimmunedisease #chronicillness #chronicpain Autoimmune Walk #disability #spoonie

Speaking From The Heart

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I downed a bottle of Alka Seltzer severe cold medicine in a water bottle before I stepped on stage at the Autoimmune Walk NYC to speak. My chest was burning. My voice was fading and my nose was running but I was at Pier 95 and I was going to speak. I was going to make the friends, relatives and co-workers that supported me and came to hear me proud.

I stepped up to the microphone with my speech in my hand and I folded it in half. I decided not to read it. Rather, I chose to speak from my heart. I told them I got a triple a plan; a plan to accept, adapt and achieve.

I said, “William Shakespeare asked: “What’s in a name?” I submit to you that there is freedom and power in a name. Knowing what I had led me to Mass General Hospital to the Igg4 center; a place where hundreds of other people suffering like me receive treatment. Knowing what I had let me know that the procedures is endured were necessary; that my illness was not just in my head. The name of the sickness freed me to find the best doctors to treat me. It also released from the fear that there was no hope for me. Accepting I had an autoimmune disease, like most of you, meant understanding that I can’t be cured but I can be treated; I can have a better quality of life.

Once I came to that realization, I had to learn to live with my chronic illness; that has required adaptation. For better or worse, I’m not like everyone else or even the next person afflicted with the same autoimmune disease. I had adapt so I could continue to achieve all that I want in life.”

#autoimmunedisease #chronicillness #chronicpain #invisibleillness #autoimmunewalk #igg4 #nyc

Ten Dollar Gratitude Lesson

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I was rushing to catch the light rail home after working on Labor Day when I decided to buy a corn muffin. I figured I deserved a treat. I brought my lunch, ate fruit for dessert instead of a mountain of candy and I competed more parade stories than I care to remember. I was tired but focused on the things I have yet to do when a man approached me.

“Miss, can you please buy me a cup of coffee?”

His manners struck me because no one else on the way home seemed to have any. Families blocked the stairs at NY Penn and didn’t move when people walked up. The handicapped section on the train was taking so I had to search for a seat. People pushed on the stairs to catch a train on track five at Newark Penn Station. And, I had to give the side eye to a lady who pushed into me as I got to the exit door.

I turned around and a man, maybe my parents age was next to me. He too had a cane.

“Sure, I can do that.”

When I ordered my muffin, he said, “that sounds good.”

So, I asked, “are you hungry?”

“Yes, I am. I’m tired of being homeless and begging but I’m so hungry.”

“I’m sorry things are so hard.”

“I can’t work because I’m too weak.”

I thought, I’ve felt that way myself.

“Well, tonight let me get you something to eat.”

I happily spent the last ten dollars in my wallet. I was grateful I had it to spend. I don’t have much but I’m grateful for what I do have: a job, a home and food to eat. None of it may be perfect but I’m doing okay.
#autoimmunedisease #invisibleillness #chronicillness #chronicpain #homeless #nyc #newarkpennstation #gratitude