Thankful To Give


“I need more rest,” I mumbled as I rolled over at 6:10 a.m. After returning to work on Monday following a brief flare-up, I pushed my body hard. I walked more than 7 thousand steps a day. Then, on Thursday, I stood for an hour and a half at a dual baby shower for two co-workers/ friends. So, I wanted to sleep in to rest my weary bones but I couldn’t.

“I gotta get up and go,” I mumbled.

An hour passed before I slumped onto the floor and dragged myself to the bathroom.

“I have a half hour to get dressed, get to the bus, NJ transit and then the 3 train uptown to the Salvation Army in Harlem. Today is the annual Disney Voluntears Thanksgiving holiday meal giveaway and I won’t miss it.”

I was walking as fast as I could through New York Penn Station. I was moving so quickly my cane slid a couple of times. I’d heard there was signal trouble on the subway. I knew I had to speed up or I’d be terribly late.

“You don’t need that cane sistah. You’re moving fast,” said a man as he smiled at me. “have a good Saturday beautiful. I hope you make someone’s day like you made mine.”

“Thank you! I hope so,” I said as I continued on my way.

Two stops before train slowly chugged into the Harlem Hospital/Schomburg Library stop (135th Street), a man named Juan got on the train. He was missing a hand, his arm was in a sling and his leg was bandaged.

“I’m not begging or looking for a handout. I’m searching for encouragement. Someone to lift me up when I am down. Someone did that for you to get to where you are. I’ve been through a lot as you can see. Now, I’m looking for a job so I can be there for my daughter. She looks to me and I’m looking to one of you. If you can help me, please do. If not, say a kind word,” said Juan.

“I don’t have a job for you but I have two dollars,” I replied. “It’s a start to getting on your feet.”

“Thank you,” replied Juan, glancing down at my cane. “Respect to you. I hope whatever is wrong with your leg gets better!

Three other people also extended money and up lifting words to Juan before I got off the train with a smile on my face (which I don’t like to have in NYC).

I remained cheerful as I stood for four hours handing out green peppers, yams and all the trimmings to families in need. The ache in my back and leg couldn’t erase the joy I felt volunteering and hearing thank you and happy holidays from the people we helped.

P.S. on my way home a group of religious people were singing. One of them handed me a pamphlet that said, “Heaven, how do you expect to get there?” I don’t know but I hope towards earning entrance.

#disability #autoimmunedisease #chronicillness #chronicpain #invisibleillness #spoonies #igg4 #thanksgiving #harlem #SalvationArmy #volunteering


An Extraordinary Ordinary Day


An ordinary day can turn into something extraordinary for me. I realized that this morning when the clerk at the Duane Reade I frequently go to get candy for my co-workers asked me, “Miss, What’s wrong with your leg?”

“It’s not really my leg that’s the problem it’s my knees, hip and spine. They’re damaged by inflammation from an autoimmune condition. They cause me pain and some weakness. I’m trying to repair them,” I replied politely.

“Oh my friend has a problem,” said the clerk as she leaned forward to get closer to me. “The doctors told her she tore something in her knee and needed a knee operation. Then, the doctor said her knee was messed up because of something wrong with her back. Now she’s scared to have any operation.”

“She shouldn’t be. She has to trust and want to get better. I’ve filled my knee with joint fluid, gotten steroid injections in my spine, scarred my nerves and use a cane but I’m walking, most times with very little pain. I also don’t fall anymore. Doing something could make all the difference for her.”

“Let me get a paper to write down the name of the hospital you went to. I want my friend to go there. You are always smiling. Your doctors must be helping you.”

I gave her the information and walked out with joy in my heart.

Later in the evening, I stopped by the corner fruit guy to get some grapes. He began waiting on another customer while searching for the rest of my change.

“It’s okay you can keep the 50 cents for another time,” I said.

“No, I stand for 14 hours a day. Today it was cold. But, I still don’t suffer like you. You walk up here with a stick to buy from me. I will not keep your money. I appreciate you buying from me.”

I took my change and shook his hand. Then, I blotted my eyes because I was moved by his words.

#autoimmunedisease #spoonies #invisibleillness #chronicpain #chronicillness #disability #igg4 #walgreens #nyc #duanereade

Four Days To Begin Again


It took me four days to get out of bed, get dressed, leave my house and go to work. My pain had finally become discomfort, which means it wasn’t gone but it was bearable with medication.

The cold was shock to my aching joints but it barely slowed me down. I was determined to begin again and I did. I was slower but I was present.

As soon as I got to work, the well-wishes poured in. I was grateful. However, I’m always baffled when people ask how do you feel? I always say fine even though I usually think “better than yesterday but every day is hard.”

Living with a chronic illness and chronic pain is isolating; it’s something most people can’t understand unless they live through it themselves. I often feel like I’m losing my mind. My crippling symptoms come out of no where for no apparent reason and sometimes they vanishes as quickly as they arrived. Frequently my days are like everyone else’s: exhausting, frustrating, fulfilling or exciting. But, on the days that my body goes haywire, I feel like I’ve aged instantly. I feel as if I’m losing quality time on this planet. So, I try to get back on my feet as quickly as possible even if I’m not 100 percent.

The truth is I decided a long time ago to refuse to silently fade away while an autoimmune disease tears apart the fabric of my life. I’ve discovered that By speaking (or in most cases typing out my tales) it informs people about the illness I kept secret for decades. It also might inspire the next person to fight for a cure/treatment. It may fosters compassion and understanding rather than pity or blame or doubt about the validity of a person’s illness. I hope it will allow someone else who is suffering to feel less alone. And, I pray it makes people think about how and if they can be there for someone in there life who is facing an obstacle.

#invisibleillness #spoonies #chronicpain #autoimmunedisease #chronicillness #igg4 #disability

Can I Take Anymore?


Last night, I couldn’t wipe away my tears fast enough. When my hand was free, I clasped it in front of me, looked up at the sky and cried out, “Lord, I’ve taken all I can. I’ve endured assaults, procedures/surgeries, endless pain, staggering medical bills, infidelity, damage to a limb, rejection as a writer, the loss of loved ones and stress and poor treatment at work but I’m tired and I need a break. This new pain is just too much, the sadness it brings is too great.”

The warm tears flowed again as I waited for an answer or a sign about what to do. Then, a single thought entered my mind, “you’ve prayed now think and wait.” I laid there for about an hour until I was calm. With my mind finally quiet I thought, “It will be okay. Maybe not tomorrow but it will be. Hold on.” It wasn’t the answer that I was looking for but it was enough to allow me to sleep. And, I did and woke up to face another day.

I sat stoically at my desk, doing my best to hid my sorrow. Several people asked but I said little. By the afternoon, I was trying to find joy in little things when my co-worker Diana came up and she hugged me. She didn’t know that unsolicited gesture of love made me feel connected to something other than my pain for a few precious moments.

#autoimmunedisease #spoonies #chronicpain #chronicillness #invisibleillness #igg4 #depression #disability #powerofprayer

Worth The Pain


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


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

Dressed For Unity


There were smiles, requests for photos, frowns and even some mumbled comments as we walked down streets to Trick Or Treat on Halloween. At first, I thought my noticeable limp or stumbles were causing the stairs. Then, I remembered how we were outfitted.

We were dressed as an Oreo cookie and a glass of milk. My stepson chose our group costume. He didn’t pick it because we are an interracial family. He didn’t select it to make a political statement. He wanted to show our unity, love, and fun loving spirit.

He wanted to enjoy the day… and nothing a no one was going to spoil that..not today and not ever. So we walked together, gathered our candy, laughed and shouted, “Happy Halloween.”


#halloween #disability #invisibleillness #interracialfamilies #autoimmunedisease #chronicillness #chronicpain #igg4