The Need To Escape

Standard

I woke up after just six hours of sleep and thought I’m not going to be able to function today. My eyes burned and my head throbbed as I glanced at my phone. Just for one day I wish I could escape this body, I thought.

I swallowed a pill and used my legs, which had a tingling sensation from the knees down, to stumble to the bathroom. As water washed over me, I mumbled my morning prayers. I asked the aching in my joints and the pins and needles in my calf to end. But, it didn’t.

So, I got back to my bed and did Yoga stretching. Finally, I felt okay. Unfortunately that changed as my fiancé and I made the 1 1/2 hour long drive to CT to pick up his son.

We could both barely stand when we got there but the smile on that child’s face upon seeing us made it worth it. We hurried off to Chick-Fil-A for lunch in North Haven. A worker came up and asked about our visit, cracked some jokes, and made us feel as if we were in someone’s home. The banter relaxed me as I took more meds.

When we arrived at our house a few exits away, yard work had to be done. I clipped bushes with a hand held hedge trimmer. The whole time, the rotator cuffs in both arms felt like they would give out. I kept thinking, I wish I could escape this life; everything is so hard for me.

At around 6:45 we decided to head to the mall. We were about to try to escape from Alcatraz.

50 minutes were on the clock when the door to our prison cell was locked. My fiancé, his son and I figured out the first clue easily. Then, my ” stepson” found a box with the second clue. My fiancé solved it and we were on to the third with forty minutes to spare. But, we hit a wall. Nearly 17 minutes and a mini meltdown passed before we got into the box that gave us the code to find the final clue. We were free wth six and a half minutes left.

On the ride to dinner, I thought, I’ve often wanted to escape from paying my bills, my job, my body, and my chaotic life. Today, I learned from an escape room that there are no easy exits. I may always require help, a plan and a drive keep me from giving up. But, with the love of family anything is possible.

#NeedToEscape #ChronicIllness #ChronicPain #Disability #AutoimmuneDisease #CT #NJ #ChickFilA #EscapeRoom

Food For My Soul

Standard

My hips burned, the veins in my head throbbed, and my knees cracked as I rose from my bed on Friday morning. When I placed my foot in the floor, I realized sleeping didn’t relieve the ache in between my toes or the balls of my feet either. But, none of this matter, it was time to get ready for work. I thought, I need to get through work to meet my friends to goto our first dinner club event; a monthly home cooked meal at each other’s homes.

I powered through a frustrating nine hours at work that was peppered with a WGAE union meeting, three and a half hours of shows despite computer problems, and learning new software. When 6:40 rolled around, my friends and I hopped into my Fiat and battled rush hour Lincoln Tunnel traffic to Union City, New Jersey.

My friend Sixto opened the door to his apartment and we were greeted by his cat. He warned Cara and Alicia that the cat could turn on a dime and go from sweet to vicious. But, they followed her into the spare bedroom used as an office anyway. I was sitting near Sixto while he cooked when we heard a commotion. Apparently, the cat attacked them and Alicia was shut in the room with the terror. Luckily, she escaped unharmed.

Sixto’s girlfriend Stephanie came home followed closely by another friend, Mike. Our gathering was compete. As wine flowed, a delicious meal with placed before us. We ate, told stories of our youth and did impersonations. We also talked about the plans for our future and exchanged advice on saving money, finding a home and finding love. We just enjoyed each other’s company.

When the meal was over and Mike went home, the rest of us walked up to the rooftop deck and pool that overlooked Manhattan; the city that brought someone from the Dominican Republic, Spain, a Jewish girl from Virginia and a native of New Jersey and New York together.

I could see Weehawken, where I first moved when I came back from Boston. Sixto pointed out his first solo apartment in West New York. We could see our past and our present at the very same time.
The moment struck me. I wondered what happened to that hopeful girl who started her life over despite obstacles. I wondered whether the woman I’d became would take the same risks. I questioned if I’d had surrendered to life rather than embracing it because I let my chronic illness cripple me. These thought raced into my mind because it had been months since I spent a Friday night out; when I didn’t go straight home from work to eat alone in front of the television.

I realized that the gathering with my friends was more than a meal. It was like food to my soul; it rejuvenated me in a way I didn’t know I even needed. It made me feel connected to other people; it made me want to explore and live again.

IMG_3387

 

 

Battling Back From The Brink

Standard

Nothing makes you question how you can go on more than the threat of losing a parent. And, last year my father, the towering figure who saved me more times than I can count, was battling for his survival.

Every time I saw my mother’s cell phone number on my phone my hands would shake, my anxiety would rise and my heart would race. I feared she might say he was gone.

Each seizure damaged his brilliant mind and stole some of his memory. He wasted away slowly; losing weight at a frightening pace because he couldn’t eat. We were helpless. The worst part is that doctors initially couldn’t figure out what was wrong. Luckily, I’d learned from my battle to find the correct diagnosis for the autoimmune disease that plagues me, that you never surrender and never stop looking for answers. So, we didn’t.

My father got a stent to remove a blood clot in his heart, fixed an aneurysm, and lives with heart arrhythmia and persistent clots that saps his energy and make it hard for him to walk.

Still, my father has battled back and he’s still here. He keeps moving even if it’s with a cane or a wheelchair. He takes his medication and he keeps following up with doctors. My father keeps striving to add more years to the 50 he’s already spent with his wife, my mother.

I realize no matter how old I get I still want my daddy around. I know some day he will leave but I pray it’s not anytime soon.

Happy Birthday, dad! I love you! #chronicpain #chronicillness #disability #family #happybirthday #father #autoimmunedisease #aneurysm #bloodclot #misdiagnosis #lossofaparent #seizure

Why Does Congress Think It’s Okay That I Die?

Standard

I may only have two days left before I am handed a death sentence. House Speaker Paul Ryan and President Trump are pushing a new healthcare bill that would lead to my death or bankruptcy. You see, I have a pre-existing condition. Without the protections from the Affordable Care Act, buying, obtaining or keeping health insurance will, once again, be nearly impossible for me. Why don’t I deserve the opportunity to fight for my life?

I’m not, nor have I ever, looked for others to pay my medical bills. In fact, in the last 14 years I’ve paid $168,000 out of pocket for my care; not to mention the lost wages from my job. Yet, I’ve held down a full-time job, paid my taxes and voted in elections. I’ve been a good American. Why should I, as a taxpayer, have to fight for medical coverage when it is given to the people who represent us in Congress?

I am being asked to choose between keeping myself alive or losing everything I’ve worked hard to maintain because I was born with a condition that has no cure. Why is my life so disposable? How can confessional leaders vote in favor of a plan that endangers their most vulnerable constituents?

I’m not sure whether those who are determined to repeal and replaced so-called Obamcare believe this is the right thing to do for all Americans. I think they’re using this measure to settle a political score. Should human life  be treated like a political pawn or the previous gift that it is? Why Is no one considering my right to life?

I certain don’t believe those who penned the constitution, which guarantees the right to life, liberty and the pursuit of happiness, believed these rights were solely dependent on wealth. Clearly, our confessional leaders do. Without guarantees for pre-existing conditions will only the wealthy will survive medical trials? Is that the America they really want?

#paulryan #obamacare #Kimmel #Trump #PresidentTrump #Congress #ACA #ChronicIllness #AutoImmuneDisease #Igg4 #ChronicPain  #RightToLife #Healthcare

 

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

Standard

 

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

Luck of the Irish

Standard

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?

Standard

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