More Than Conquerors

“Hi Shoyea-Gaye. Are you feeling a little better?” Asked my doctor.

“That’s good,” he said after I nodded.

I had been in the hospital for a couple of weeks.

“Well,” He continued, “After getting the results from your family doctor, we ran further tests… I’m sorry to tell you that all of them came back positive for Lupus.”

I felt my heartbeat pounding in my head. I had researched lupus when my family doctor had mentioned it and was I well aware of how dangerous lupus was: joint pain, hair loss, organ damage, possibility of diabetes, stroke and heart attack!

Everything else said was a blur…

It was later that my father repeated what the doctor had said. I had an incurable disease, which had damaged both my kidneys. This could not be happening. I was only seventeen!

I had big dreams. I had to do my CXC’s (examinations done at the end of high school in the Caribbean). I had to grow up, get married and have a family.

NO!

I closed my eyes and submerged myself in total numbness. I had to make myself feel nothing… because if I did not, I would fall apart.

Ok… Let’s backtrack a little. One month earlier, I was a perfectly normal 17 years old, preparing for major exams, having a normal teenage life, feeling perfectly healthy. I hardly even used to get the flu! The only thing that was not as I would have preferred it to be, was the fact that one year earlier my mom had a stroke, which I did not handle too well. I was stressed out and my grades fell. However, she was recuperating so that was working itself out. Life was good.

Or so I thought, ignorant of the fact that lupus had come to take up residence in my body. Little by little, I began to feel there was something wrong with me. Joint pains, terrible headaches that would never go away, fatigue, rashes, spots on my hands… My parents took me to my family doctor who said it might be lupus and sent me to have some blood tests. Some time after, my sisters and I went to a fish fry an all of us got food poisoning. We went to a public hospital and got medication. My sisters got better, I got worse. I could not digest anything at all. I threw-up until there was nothing left in my stomach except bile. I was taken back to the hospital where I was admitted then transferred to another hospital.

The few steps I had to take from the wheelchair to the ambulance took every bit of strength I had. I was dehydrated because of all the vomiting; every joint felt like it was on fire and blood ran down the saline tube going to my hand. The pain was almost unbearable but I had to be strong. Breaking down now would only make things worse. I never thought the day would come when it would be a struggle to walk…but it had come, and I had to face it. I began to push myself. One agonizing step after the next and I finally made it inside. I vaguely recall sounds and moans. Maybe other people were in the ambulance, or maybe not. I stared blankly at the ceiling. Like the moving vehicle, life was taking me down a new path in which I had no control. My first time in an ambulance was somewhat strange, but unknown to me then, was the fact that there would be many more times to come.

The days went by in a blur. I couldn’t eat and had to be fed through tubes. Every now and then I would wake up to injections. They hurt at first, but after a while, I didn’t even feel the sting of the needle piercing my skin. I would sometimes wake up to see my family and friends. I wanted to talk to them but I was too weak to utter the words. All I wanted to do was sleep…

Everything changed one midnight when my phone rang. When I heard my mother’s voice on the other end of the line, I felt life begin to course through my veins. Although she couldn’t visit me because she was recovering, her inspirational words gave me strength. My older sister then came on and told me I was strong enough to handle this disease…and then she cried. She cried for me because somehow she knew I could not do it for myself.

Lying on the bed, I was still confused, not knowing what to think, how to feel. I was in a place filled with so many people yet I never felt alone. I was about to retreat into my own world when I got the text message that would forever change my life. It came from my little sister Shantayae:

“Shoy, I don’t know what you’re feeling now but I hope u don’t think all is lost. I don’t. I think your life is just beginning. You know it’s said if you don’t have challenges in your life, it’s not fulfilling? Well now you have a challenge and this is just an obstacle to get over. If God put Lupus in your blood, who says he won’t take it back? Trust in Him ok? Look at it this way, God wants to make all of us a living testimony. He just hasn’t reached Sash, Daddy and me yet, I love you.”

Every word of that message filled me with some sense of hope. I reached over on my bed and took up my Bible that was lying next to my pillow. I flipped it open and saw it was on (the book of) Job. It was only after reading that story that I got all the answers I was looking for: Like Job, this was a test of my faith; of how much I could endure. Like Job, I found out who my true friends were. Many people I thought had cared deserted me. Never came to visit, never even called. Then there were those who were there every step of the way.

“In prosperity your friends know you but in adversity you know your friends.”

Like Job, God had allowed the devil to touch me physically but whether he could touch my soul was up to me. It was then that I decided that like Job, I wouldn’t allow him to break my spirit. This disease would not break me, it would make me. I would not limit myself. Instead, I would succeed at everything I did in spite of and because of it. This was my battle to fight and I would fight it.

In and out of the hospital for the next couple of months, I did my exams, did a kidney biopsy, graduated from high school then worked through the summer. Though it was hard, I held on to my faith that everything happens for a reason and with God, I was strong enough to overcome it.

Coming close to death has taught me how to live. For the first time in my life, I do not just exist, I am living. I understand what it means to appreciating everything I have been given and trying my best to be happy. Walking out of that hospital with all my bags, I made a vow: I would live to defy all the logics of this disease.

I make it my mission to educate the people around me about lupus because even though it affects so many people, many have no idea what it is.

I also try to help anyone going through lupus because in the words of Martin Carter, "I do not sleep to dream...but dream to change the world"… My little part of the world : )

More than Conquerors
by: Shoyea-Gaye Grant (Jamaica) ©

It attacked us, unsuspecting, unprepared,
Bringing us to the brink of death
We chose not let go, will never surrender
We fight with all our might, with every breath

Optimism has become our friend
Teaching us to appreciate life
To play the hand that life has dealt us
To be strong, even when pain cuts like a knife

Humility is the cloak that surrounds us
Hope helps us greet each day with a smile and a song
We take nothing for granted and live in the moment
For in our eyes not everything lasts for long

Lupus has shown us that we are fighters
Despite the odds, we are like eagles soaring free
It has indeed changed and affected our lives
But does not define us or limit who we can be


By Shoyea-Gaye Grant ©

First published in The Lupus Magazine September 2010