44. Hope in Miracles

44. Hope in Miracles

From Chicken Soup for the Soul: Find Your Inner Strength

Hope in Miracles

There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.

~Albert Einstein

It was the last summer of my childhood — right before the stress of college applications and shopping for prom dresses. But after seventeen years of near perfect health, my expectations of entering adulthood were crushed by a crippling illness.

It began with headaches and a fever. Nobody thought anything more of it until one day when I opened a book and found that I could not read.

“What’s wrong?” my mother inquired with concern.

“I don’t know how to read,” I mumbled through frustrated tears. I started to panic. I couldn’t imagine a world without reading! And how was I going to graduate with honors if I could not read?

But the words looked foreign to me, as if written in a different alphabet.

“What do you mean that you can’t read?” my mother asked, perplexed. Seeing that I was not joking or exaggerating, she telephoned my aunt, a family doctor. My aunt gave me a quick neurological evaluation over the phone.

“What is your full name?” my aunt questioned.

“Chelsey . . . ummm . . . I don’t remember,” I responded.

“Can you count to ten?”

“One . . . two . . . four . . . umm . . .”

After failing these basic questions, I passed the phone to my mom. My aunt instructed her to bring me immediately to the hospital.

En route to the hospital, the fog in my brain increased. My last memory is the car pulling over to the side of the road and paramedics transferring me to an ambulance.

That night, I slipped into a coma. For the next month, the ICU would be my home. The doctors were bewildered, as every test came back negative and my body continued to deteriorate. I was intubated since I could no longer breathe on my own. At one point, I was losing so much blood that I needed multiple transfusions. The doctors prepared my parents for the worst: I only had a ten percent chance of survival. Even if I did survive, they warned my parents that I would be a vegetable or live with severe neurological disabilities due to permanent brain damage.

My aunt had flown in during this time to help support my family. She pored over research articles in the hospital, searching for the answer that my doctors could not find. Finally, she found out about an extremely rare illness that seldom occurs in children: central nervous system vasculitis. This is a neurological disorder that happens when the immune system attacks and inflames the blood vessels in the brain and spinal cord. It presents itself in a variety of neurological symptoms. She pushed my doctors to do a brain biopsy to confirm my diagnosis. Finally knowing the name of my disease, they gave me the protocol of chemotherapy and steroids.

After thirty-two days in a coma, I finally woke up.

I opened my eyes to a world of unfamiliar faces and strange sensations. Why couldn’t I move? Who were these people? Where was I? The next couple of weeks were a flurry of medical specialists, brain scans, and visitors who wondered if I would recognize them. Thankfully, the chemotherapy worked to control the vasculitis and my prognosis improved each day. Within a week, I could speak in full sentences. Later on, tears welled in my eyes when I found that I could independently read my get-well cards.

My road to remission literally began with my first step. My body had lost muscle memory and therefore had forgotten how to walk. The physiotherapist visited me each day to help me sit up in bed and eventually learn how to stand. My feet felt like a pile of bricks as I tried to lift one in front of the other. But after two and a half months of living in the hospital, I proudly took my first baby steps outside the hospital to finally go home.

It’s not easy being a teenager with a new illness. The steroids had made me gain forty pounds. I was partially bald from my brain biopsy. My voice box was strained because of some damage from the breathing tube.

If this was supposed to be a miraculous recovery, I didn’t want it.

One day, a Tim McGraw song came on the radio about a man who changes his life after being diagnosed with an illness. A piece of the lyrics caught my ear: “And he said someday I hope you get the chance, to live like you were dyin’.”

That one line in the song triggered the turnaround in my attitude. Instead of viewing my illness as unfortunate luck, I could choose to value it as an opportunity to live life in an extraordinary way. Too many people live life forgetting the value of love, hope and joy. My illness showed me the power of love from supportive family and friends. I have recognized the significance of hope, even when it was only a glimmer. I also found joy when I traded my anger and blame away.

I wish I could tell you that I was miraculously cured; but to be cured means that the illness will never return. I experienced six years in a wonderful state of remission. Unfortunately, three years ago, the illness came back with new devastating symptoms. My brain went into a state of constant subclinical seizures. The vasculitis also began attacking my visual cortex, forcing me to live through terrifying hallucinations. It was not until the doctors restarted the chemotherapy infusions and steroid doses that my immune system regained control. And once again, God had let me survive without permanent brain damage.

I discovered that my illness was not finished with me yet and I became disconsolate again. What was the point of plans and dreams when I could not predict my flare-ups? How could I look forward to the rest of my life when my immune system was a dormant volcano?

I did not feel like much of a miracle anymore.

But then I remembered that I have a choice in how to live. I will not let my life be defined by my diagnosis, but I can also let my diagnosis be part of my story of hope. I may not be able to control my symptoms, but I can control my spirit. The real enemy was not my disease; it was the fear that made me choose not to live.

Today, there is still no cure for CNS vasculitis. Some people with this diagnosis live with disabilities. I have been blessed to have no permanent damage. I still live each day with the possibility that my immune system might attack my brain again. But for every challenge I have overcome, I have gained strength and resilience to help me appreciate the little miracles in my life.

Every step I take reminds me that I can still walk. My ability to write this story means that I still can read and write. But sometimes the most important miracle is not the one that saves your life, but the miracle of choosing to live with hope every day.

~Chelsey-Ann Alissa Lawrence

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