Right Here, Right Now, I Am Safe

Apr 5, 2021 2:28:00 PM / by Marisa Zeppieri


“The reward you get for overcoming your last challenge,” Bishop T. D. Jakes once said, “is your next challenge.” As someone who was only beginning to understand what it meant to meet new challenges and how to navigate them, I thought, Well, I went through a horrific experience, I survived it, and life will be nice and quiet now, right?

A few weeks into my recovery, I woke up with a fever that lasted and lasted. The medical team thought the fever was likely caused by an infection, but they couldn’t find any infection. Tubes of blood were drawn and tested over several days. No answers. More blood was taken from the needle placed in my arm, the deep red liquid spiraling down skinny tubing into two small con­tainers that reminded me of minibar vodka bottles. Three days later, the blood cultures showed nothing. Again, no infection.

Weeks into my time at the hospital, I hadn’t moved. Every time I tried, I was completely exhausted. My doctors tried to discern if the exhaustion and body aches were the result of being hit by the truck or if they had a separate origin. As the fever raged, a pinkish-red rash appeared on the trunk of my body and across my face. My nose and mouth broke out in painful sores. The doctors kicked around the idea of a virus . . . until the left side of my face started going numb and the left side of my bottom lip began to droop one afternoon.

No budding faith kicked in.

No poster child showed up living into the mantra “If God brings you to it, God will bring you through it.”

Nope. Nothing.

I wish I could tell you I reacted in a cool, calm, and collected manner to my newfound lip sag, but my reaction was quite the opposite. Feeling around for my compact in a small makeup bag I kept on the bed for easy access, I opened it to access the mirror and stare at my saggy lip, pushing it into its proper posi­tion over and over only to watch it wilt back down once again. Something is wrong, I said to myself. Soon, my heart started beating faster and harder. The vitals machine above my head sounded. And I clutched at my throat as classic symptoms of a panic attack suddenly drove through my body like a freight train. I repeatedly mashed the nurses’ call button and yelled out, “Hello! I need help! Hello!?”

A variety of new tests, consults, and scans later, we finally got an answer: a ministroke. I didn’t know then that this answer would lead to another set of answers about what was happening in my body. The team of physicians debated whether this ministroke was related to the head injury sustained when my skull crash-landed into the asphalt, to my blood circulation, or to a potential clot from lying in bed for so long or had occurred because of an entirely different reason altogether.

My room became a revolving door for specialists from infec­tious disease and rheumatology. Terms I was unfamiliar with suddenly were constant: rheumatic fever, tick-borne diseases, HIV, rheumatoid arthritis, and tropical diseases with names I still can’t pronounce. The physicians seemed confident that whatever was causing the myriad symptoms, they would find it. I actually felt optimistic, believing that if strange medical symptoms were to ever happen in my life, being overseen by a team of doctors in the hospital was probably the best situation for this to occur.

See what just happened there? It was during instances like this—that I reflect on today—that small shifts in my mindset started to occur. Yes, I was so utterly terrified and confused about what was happening to my body, but at the same time, I was so grateful that out of all the places in the world I could be, I found myself in a top hospital surrounded by incredible physi­cians. The blessing was peeking out and beginning to pour some light on all the darkness that seemed to be hovering around me.

Now, even though I had confidence in my medical team, I didn’t have quite as much confidence in my body. Between my initial injuries from being hit and these new symptoms, my body suddenly seemed foreign to me. Within this body that stored everything that is Marisa, my thoughts and what was physically taking place were disconnected, seemingly different universes. The truth was, I had no control over my body, and it felt almost as though a betrayal were taking place, that every cell conspired to attack me as payback for all that transpired. Thinking back, my perception of the situation wasn’t that far off.

“Marisa, have you ever heard of systemic lupus?” I stared at the rheumatologist’s shiny jet-black hair that was perfectly styled into a French bob.

“Um, what? I have no idea what that is or what you even just said,” I mumbled. We spoke for twenty minutes, but the only three things I remember are these:

1. I now have what is considered an autoimmune disease.

Currently, the National Institutes of Health estimates almost twenty-four million people in the United States live with an autoimmune disease. I am now part of this tribe.

2. There is no magic pill when it comes to curing autoimmune disease.

In fact, there aren’t many options or answers at all, especially when it comes to autoimmune disease. Currently, more than one hundred autoimmune diseases have been identified, and lupus is just one in that list—one that happens to be severely lacking in research and treatment options. And according to the American Autoimmune Related Diseases Association (AARDA), most people who are diagnosed with an autoimmune disease will wait an average of three years or more for a diagnosis, be referred to four to five doctors, and spend around $50,000 to discover why they are sick. For me, even though I can clearly recall lupus symptoms from a young age that were consistently ignored, I received a speedy diagnosis by having all of the tests completed in the hospital and being seen by multiple teams of doctors all at once.

3. Sometimes, the symptoms of the disease are exposed after a trigger (physical trauma, severe illness, or even pregnancy). My trigger was the collision with the three-thousand-pound truck.

“So if I didn’t get hit by the truck, I may not have gotten sick?” I asked the rheumatologist.

“I can’t tell you these symptoms wouldn’t have occurred at some other point in your life, but in this case the physical trauma on your body seems to be the catalyst,” she informed me.

“Okay, so what can I do to get rid of it?” I responded, opti­mistically putting this statement out into the universe.

My optimism lasted about three seconds.

“There is no cure for lupus, but we can try some different medications to manage it,” she replied.

No cure, more medicine? What if I didn’t get hit by the truck? Those lines became a track that started playing on repeat in my head after the specialist left my room. This tiny five-letter word opened a chasm in the universe that I felt was about to swallow me whole. Suddenly, I realized I was ill prepared for whatever was coming next with this strange-sounding disease, unaware I was about to get a lifetime of education.

Noticing the spiral I was about to head down, I tried to focus on the stillness in the room, to bring peace to my mind. Then I closed my eyes and started talking to God. Surely if anything could help me calm the thought circus on the center stage of my mind and help me feel less like I was about to fall into an abyss, it would be prayer.

This sounds really bad, God! was how I started. And I am really scared about what is happening to my body. Please teach me to see the blessing in this somehow through the fear and find some peace, because right now all I can focus on is my worry and anger and heartache.

My prayer eventually transformed into rest and one of the deepest sleeps I had had in a while, until it was abruptly bro­ken by the exuberant and feisty spirit of my grandmother entering my hospital room with trays of food. “You no eat enough, Marisa! That’s why you no feel good,” she exclaimed loudly. “You skin and bones!” she added as she put down the food and lifted my limp wrist from my side. Seconds after her entrance, a gaggle of other family members seemed to descend on my room.

The minute Italian family members find out you are sick and in the hospital, they immediately do several things:

  • Cook for you
  • Feed you
  • Feed you again
  • Tell you at least a dozen times that you aren’t eating enough or do not weigh enough and this is the sole reason you became sick.

Regular visits in the hospital from my cousin, aunts, uncles, mom, and grandmother brought food and lectures and broke the monotony, lifting my spirits. I secretly looked forward to the gourmet food they brought each day without fail (even if it came with unsolicited, bizarre advice and opinions about my health).

In stressful situations, I tend to lose my appetite, but each dish arrived, too mouthwatering to deny. Italians believe there is no illness enough garlic, lemon, onion, chicken broth, and brandy or amaretto won’t heal. And with my newly added diagnosis, a battle of the kitchens emerged to see whose meal was going to make me magically feel better.

I welcomed their unstated but obvious competition; one more serving of bland hospital rice pilaf and prepackaged choco­late pudding would send me over the edge. And don’t even get me started on the cans of oil-based chocolate shakes medical staff pushed on me, saying, “Calories, Marisa, calories.” Um, gross, hospital personnel . . . just gross.

These lovingly prepared home-cooked meals became a topic of nightly conversation on the floor among the nurses and me as the savory aroma would lead them into my room. Would tonight’s meal be stuffed peppers, sausage and potatoes with onions, or Grandma’s famous pizza rustica? Whatever the culi­nary masterpiece, I was gifted with so much more than a supply of nutrition and energy to my body.

As the dinner table was brought to my hospital room each night, I began to reconnect not only to the outside world but also to myself. I was injured and now faced a disease as well, but I was conscious, I could eat on my own, and I was still able to enjoy one of my favorite daily activities—sharing a delicious meal with my family.

In brief, dinner-length moments, this daily custom helped me forget I was in recovery. As I devoured each dish, I qui­etly watched my family—those people God put into my life—interacting with one another. There was laughter, bits of food stolen off each other’s plates, details on how the dish was pre­pared, and theories as to why each kitchen’s way was, of course, the only way it should be made.

At dinnertime, we forgot the sadness that overcame our family when I first arrived at the hospital. Instead, we found joy and our smiles once again.

Mom would slide her arm between the bars of the hospital bed and give my right hand a long, gentle squeeze. Smiling, she would whisper, just loud enough for me to hear, “We aren’t going to let this new situation, this test, harm our faith, Marisa. God knows exactly why all of this is happening and is going to use it for good. Maybe not tomorrow, or next year, but in the right time. Just you watch.”

As she said this, my cousin walked over and placed a small bowl of homemade rice pudding on my lap. “Come on, bones, it’s time for dessert.” My favorite. The sweet cream and cinnamon flavor lightly wrapped around my tongue and was a welcome treat after a rich, salted meal. And instead of thinking about my bright-red rash, or relentless fever, or strange, sharp pains in this moment, I looked around and witnessed the blessing unfolding in front of me—the blessing that was right before my eyes, that I could have missed if I had failed to focus on what was in front of me.

This is my family, I thought. And they are pretty fabulous.

Nerves were quickly abated by hope. Worry shifted to look something like budding faith. I said to myself, I may not know what my future holds, but I do know that right here, right now, I am safe. I am loved. And in the deepest recesses of my human understanding of the Creator, I am confident God is not going to let me down.

It’s sitting in that space, the one where you tell yourself you are loved and safe and capable of triumph, that helps you hold onto hope whatever the situation, whatever the news. It is decid­ing to dig deep to find the blessing—however small—amid the crisis or disaster, the one blessing that can help you from spiraling down into an abyss. And it is the decision to reflect in silence and engage in listening that allows you to receive the message that this hardship, this challenge will not be the very end of you but in fact may be the very thing that drives an insatiable desire to rejoice in living.

BL chronically fabulous

This article is an excerpt from Chronically Fabulous, chapter 4: A Lesson in Silence.

Topics: Excerpt

Marisa Zeppieri

Written by Marisa Zeppieri

Marisa Zeppieri is a health and food journalist, speaker on autoimmune disease, former Mrs. New York, and the founder of LupusChick.com, a nonprofit for people with lupus and other autoimmune conditions. She writes and speaks about thriving despite chronic illness and is the weekly series host for The Lupus Foundation of New England's online lupus program. For her advocacy within the autoimmune community, she has been featured in Healthline, U.S. News, Glamour, Eating Well, Ladies Home Journal, WebMD, among others, and her work is highlighted in Lady Gaga's Channel Kindness anthology. Zeppieri lives in Rochester, NY.

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