I’ll never let my fear of dying (or anything else) threaten my dreams again

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I don’t like to admit that I’m afraid of what my autoimmune condition, igg4 related systemic disease, will do to me. But, the truth is I have often thought that complications from it could cut my life short.  I usually bury the worry using my faith or denial. However, it took control off me in July 2014 and nearly ruined my dreams.

Six months after finishing my memoir, Misdiagnosed: The Search for Dr. House, I was well on my way to publication. I’d gotten a foreword from late comedian Bernie Mac’s widow Rhonda McCullough. I’d gotten reviews from three bestselling authors: Wes Moore, Richard Cohen and Marya Hornbacher. I’d also received three magazine reviews: Publisher’s Weekly, Kirkus Reviews and IndieReader. And, I’d gone over the pages wit an editor from She Writes Press and my literary agent at Serendipity Literary. Then, I learned that I had to have a second stomach repair operation, a Nissen fundoplication redo.  The news rocked me to my core because I’d already endured six lymphoma related surgical biopsies and numerous other procedures in a two year period. My body was tired and so was my soul. I feared I wouldn’t survive.

I prayed about what to do with my book. I remember thinking that I should stay the course. But, I ignored my internal voice. I wrote to my agent and cancelled my contract, abandoned the foreword and decided to self-publish.

My book got lost in the shuffle of the thousands of other self-published titles. The mediocre cover using a stock image didn’t get it noticed.  And, I didn’t have the money or energy to promote it.

I’d rushed it out because I was afraid that if I died no one would ever see it or be helped by story. Yet, by not giving my book the polish and publicity it deserved, I’d failed anyway.

I thought I had no choice but to live with my terrible decision to hurry Misdiagnosed: The Search for Dr. House to the marketplace. Then, I saw a Publisher’s Weekly Booklife contest offering a free book cover redesign.  I wondered, can I salvage my dream of being a successful writer or at least reaching more people with a new look?  I decided to enter the contest.

I couldn’t believe it but I was selected. My book cover was reimagined by a talented artist at Tugboat Design. It was completed the way it should have been from the beginning. I was inspired to reedit the pages to remove some explicit content that readers thought obscured the book’s central point. And, I added the foreword back in. I also made sure buyers could get the book at stores, libraries and online in every form by setting it up on Amazon, Smashwords, and IngramSpark.

Now I have the memoir I wanted. On April 24, 2017 a new edition of Misdiagnosed: The Search for Dr. House is released. I vow that no matter what medical trials I face in the future, I will pursue all my dreams by relying on faith not fear; that way I won’t have any regrets.

P.S. Share this post with those who love a good book, are in need of inspiration, or need a good kick in the butt to stop making excuses and live. If you’ve already read it, please review it on amazon, pass your copy along or drop me a line.

 

#igg4 #autoimmune disease #chronicillness #chronicpain #memoir #death   #fear #BernieMac #RhondaMcCullough #SerendipityLiterary #SheWritesPress #PublishersWeekly #KirkusReviews #IndieReader #WesMoore #RichardCohen #MaryaHornbacher #Misdiagnosis #BookLife

A Gift from Beyond the Grave

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I almost never exclaim with glee in the newsroom. All too often I’m in the verge of tears because I’m covering one tragedy after another. But, this morning I was overcome with happiness. On my desk was a box containing candy from my late co-worker Mary Lilly’s husband, Jim. 

I hadn’t spoken to him she passed suddenly in December. The truth is I’m still in shock over the loss. I miss her stories, her kind words, her constant inquiries about my health and willingness to help, and her boisterous laugh. I miss my friend. 

Seeing that candy made the smile for the first time in months. Memories  of Mary providing lollipops and mints to the right side of the newsroom in edit room four came flooding back. I would supply the left side of the room.

I gladly shared that candy with my co-workers in her honor. I told everyone who gave us the unexpected treat. It was a sweet reminder of the little things Mary did to make every aspect of my life better.

#rip #marylilly #coworkers #randomactofkindness #tvnews #journalism #chronicillness #autoimmunedisease  #nyc 

Luck of the Irish

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I wore my green sweater to celebrate St. Patrick’s yesterday, which may have seemed odd because I’m black. But, I’m engaged to an Irishman and I couldn’t be prouder.

Four years ago, when my fiancé proposed he presented me with a claddagh ring symbolizing love, loyalty and friendship and that’s what he’s shown me the last six years. He stood by me through multiple surgeries, six cancer scares, infertility and the financial strain of chronic illness. We’ve endured more than some people have in a lifetime yet we’re still holding on to each other while we co-parenting his son.
Some people have asked why we haven’t walked down the aisle yet. I, generally, feel no need to answer but yesterday I thought about it. The only thing we haven’t done is sign a piece of paper with the state. We’ve exchanged vows to each other in the presence of God. We both wear our rings and honor the commitments that come with it. But, we deserve a party to celebrate all that we are to each other and all that we’ve overcome with our family and friends.
We’ve saved and been forced to spend the money for a wedding on my medical needs over and over again. Yet, I’m confident that the luck of the Irish will be upon us when our “big day” finally arrives. Until then, I think of the closing line from Irish blessing my fiancé gave me the day we got engaged, “until we meet again may God hold you in the hollow of his hand.”

#chronicpain #autoimmunedisease #irish #stpatricksday #chronicillness #marriage #relationships #faith🙏

Can the Memory Of Love Sustain You When Nothing Else Will?

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Can the memory of love sustain you when nothing else will? I learned the answer is yes. My mother, Gloria, and I were making our last Meals on Wheels delivery on behalf of Disney and the Jan Hus Church on East 74th street when we met Rita.

As soon as my mother and I exited the elevator in the eighth floor we saw her waiving us around the corner to her apartment. My mother was limping because of pain in her hip and I was hobbling with my cane due to my broken toes and usual spinal pain.

We walked down the long hallway and said, “Meals on Wheels delivery. How are you today?”

Rita paused and says, “Ah, you know what I won’t complain.”

I replied, “Well, I’m glad you’re inside on such a cold day.”

“Actually I was just downstairs. I had to get something very important in the mail. My landlord wants to force me out of my home after 50 years so my niece and nephew, who are attorneys, are helping me. I’m just glad my husband Harry isn’t alive to see this.”

Rita told us that when she and Harry moved into the building on East 76th Street in the early 1960’s it was considered a Hungarian slum. She figured the neighborhood had changed some but she was stunned to learn that her tiny one bedroom was now selling for 800 thousand dollars. She, however, was not interested in moving.

Rita left us at the front door and rummaged through a pile of papers until she dug out two pictures of Harry. He was a tall, handsome, smiling man with dark wavy hair.

Rita told us they met at a resort in the Catskills in July 1944 when she was just 14 years old. The six foot 137 pound teenager walked up to her and put his arm around her. She exclaimed, “no one puts their hands on me.” Rita says Harry laughed. He never left her side again other than to go to war.

He returned home and became and engineer for Columbia Records then Sony. She worked for comedians like Joan Rivers and Phyllis Diller. She said Harry was so funny people tried to convince him to write jokes for a living. But, she was ill and could only work part time and back then the going rate was five dollars a joke so Harry passed. But, Rita says he never gave up charming and entertaining everyone he met. Even when he was in the nursing home later in his life, Harry got preference over the other residents because he always talked to the orderlies like Jesus and lifted their spirits.

Rita caressed the pictures and said, “Do you believe in love at first sight? I do because Harry saw me and he loved me. I know he did because, once, when he was nearly comatose in a nursing home I said, “You know what Harry we’ve had quite a love affair.” Rita said he got a burst of energy and jumped on the bed like a child with a big smile on his face.

Rita said she sold all of jewelry and nearly everything of value she owned to keep Harry close to her towards the end of his life. “It was worth it,” Rita said. I thought about leaving this apartment after that but I couldn’t.”

“Don’t,” I said. “It’s where you made a life with Harry. It’s home.”

“And, you had more love in your life than most people. You had laughs with Harry to get through the tough times,” my mother said.

“You’re right,” Rita responded. “I never thought I’d need meals on wheels but if it brings me people like you two to talk with about Harry I won’t complain.”

#elderly #nyc #disney #mealsonwheels #loveatfirstsight #randomencounters #love #marriage #chronicpain #autoimmunedisease #backpain

Cost of Survival

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$163,270.90 that’s what I’ve paid towards the cost for doctors to keep me alive and as well as I could be the last 15 years according to a note from Cigna.

Before that I had another health plan so who knows what grand total for my care really is, I thought.

My lip quivered as I stared at the update from Cigna following my latest trip to the doctor.

You know what else I could’ve done with that kind of money or the average $9000 I used to pay out-of -pocket each year before the Affordable Health Care Act capped the amount, I thought. I wonder how much more I will pay when Obamacare is repealed. I wonder if my level of care will change. And, I wonder if I’ll be forced to stop dragging myself to work which allows me to be a tax paying member of society. Right now, I work hard despite my pain and have very little to show for it. I get to enjoy very little in this world.

My lip quivered as I stared at the update from Cigna following my latest trip to the doctor.

You know what else I could’ve done with that kind of money or the average $9000 I used to pay out-of -pocket each year before

I crawled up the stairs on my hands and knees to my bedroom as my broken toes throbbed.

I better not fall again, I thought. I might have to sell my house to pay the bill.

I flopped down on my bed clutching the paper that had dampened my mood. I shook my head trying to understand why it costs so much just to survive. Then, I glanced over at the nightstand and spotted a photo of my fiancé and “stepson” with their arms around me.

If I didn’t lay out that money, I wouldn’t be here, I thought. I wouldn’t know the love I have in my life. I wouldn’t have written books to leave a legacy behind. And, I wouldn’t have been able to show anyone that no matter what “cross” you have to bear in life, life is worth living at any cost. #igg4 #chronicillness #chronicpain #backpain #autoimmunedisease #nevergiveup #cigna #obamacare

Wash Away The Pain

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I turned on the shower early this am so the water could drown out my tears. The hot water flowing across my shoulders relaxed me, if only for a few moments. I wanted to scream, shake my fists to the heavens or falls to my knees. But, I couldn’t decide which one to do so I cried. No matter what I did, I couldn’t ease my pain.

I kept thinking about the harsh words from someone I love that wounded my souI so deeply I’m not sure it will ever heal. I could see my father’s face in the hospital as he tries to be brave amid heart trouble. I could see my mother acting as the rock while I know she must be racked with fear like me. I glanced down at my broken toes and bruised arms from the crutches I’m using to get around and thought about the money yet another illness will cost me. I stared at my body riddled with scars from more than 25 procedures because my autoimmune condition and thought, how much more can I take?

I stood under the shower head until my face was only wet by the water coming out from it. Then, I silently prayed for God’s guidance. By the time I stepped out, I had no answers but I was a bit more calm because I’d gotten my pain and fear out and I felt a bit less lonely. All I could do is dry off and begin again. #autoimmunedisease #chronicillness #faith🙏 #backpain #nevergiveup #family #igg4

Number One Thing To Do

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I woke up this morning with no where to go; that’s extremely rare for me. I’m constantly making “to do lists” so I utilize the time I am well effectively. But, today’s list was blank except for: “put your feet up.”

I had to write that down to remind me to not to attempt to use my crutches to wade through the snow and ice on my doorstep to try to get to work.

At 9:30 am, I felt compelled to get up and shower. Then, I stood staring at my closet until I realized I just needed something to wander around the house in. So, I grabbed the pajama set my dear friend bought me the previous night.

I mentioned to him that my fiancé decided we should stay a second night at a hotel near work to make his commute easier. But, he’d taken our suitcases to his car earlier in the day. This meant thatI had no change of clothes.

My friend offered to escort me to Century 21 to pick something out. But, my supervisor arranged for our courier to drop me off at the hotel so I didn’t have to limp through the snow.

I slid on the slush outside the courier’s car at the hotel and fear welled inside me.

Maybe it is best that I don’t go out in this wintery mess, I thought. I might break something else.

As I sat, fully dressed in my hotel room, my friend called. He was coming upstairs to drop something off. He’d gone to Century 21 on his own to pick out the night set for me. He also got a toothbrush and toothpaste.

“I can’t believe you did this.”

“I just wanted make sure you get some rest. Do you need anything else?”

“No, you’ve done more than enough.”

“Okay. Just feel better and rest.”

When the room door closed, I dialed my mother and told her what he did.

As soon as I hung up, I slipped into the pajamas and sat on the end of the bed as my broken toes throbbed.

I have got to put my health first, I thought. I go to the doctor, take my medication but I need to rest more. I have tackle this the way I get everything else done.

I took out my phone and wrote “put my feet up” on my daily to do list. Then, I grabbed my phone and emailed my boss to take the day off.

#tvnews #nyc #backpain #chronicillness #autoimmunedisease