One More Year Pan Di Bugga!

Nine years ago today, I was confined to a hospital bed, shackled by the fangs of malady and fear, tied down by the turmoil of confusion and frustration, and handcuffed by the tubes passing through my nose and my mouth, and those piercing through various parts of my body. My less than 100 lbs body had become a pin cushion and I slowly grew numb to the feeling of the needles as they repeatedly punctured my skin. When I was told that I had Lupus, and later learnt that so did all the other people who died in the beds next to and in front of me, I realised that I needed to numb much more than my physical responses.

Eventually, I attempted, from the perspective of a 17-year-old, to process the reality that I had an incurable disease. I tried to understand the audaciousness of this menace that had not only intruded and caused havoc inside my body, but was bold enough to invite so many other complications and difficulties to join the show. I could not conjure enough mental potency to comprehend this phenomenon where the system that should keep me healthy, was attacking my joints and organs. The betrayal was so profound it was inexpressible and it ripped through my very soul. To say that life threw me a curve ball was the understatement of all understatements. It felt as if Lupus pushed me out of a plane before I could strap on my parachute and all I could see beneath me, while I was falling headfirst with the wind buffing my skin, were jagged-edged rocks.

In hindsight, I now realise that what I thought was the worst day of my life, was, in so many ways, the beginning of it. My journey with Lupus has led me down a path in which I have rejected religion in exchange for a relationship with God. These 9 years, I have experienced God’s miraculous love repeatedly in ways I could never have imagined. On occasions where no human power or scientific development could have helped me, the Creator of the universe intervened and gave life and strength to my broken body. Every time the pain becomes almost unbearable, He who breathed this world into existence, holds me so close that I can feel His heartbeat. When I so easily become blinded by frustrations that I forget, He gently whispers in my ear to remind me, “I specialize in the things that seem impossible. ‘I know the plans I have for you, to prosper you and not to harm you. Plans to give you hope and a future. Your latter days will be greater than your former’, Babygirl”.

My journey with Lupus has led me down a path in which I have rejected self-pity (generally) in exchange for responsibility of my own perspective. I say generally, because every now and then, I host my own pity party, where I cry my eyes out and hug up the why me’s. Of course, a girl is entitled to those occasionally. But then I get up, brush myself off and fight again. The problem is not in having the pity party; it’s the choice to become a permanent resident of that mental state.  That insight has led me to the realization that it is my duty to myself to use this negative situation for my good. I discovered very quickly that if I didn’t try to be positive and hang on to the lessons, I would be overcome by depression and anger, and my spirit of militancy would shrivel up and die. So over the years, I have worked assiduously at perfecting what has now become, my three-step approach. The first step consists of an acknowledgement of the reality of the situation and the quest for the positives. So I often ask myself: “It already happened but what good has come from this?” The second step is the exploration of the lessons. For this, I ask myself: “What has this taught me?” or “Which lesson has this experience reinforced for me?” Then the third step involves the pursuit of growth. For this, I ask: “How can I use this lesson to make me better?” Initially, I used this as a coping mechanism for the many Lupus-related complications I faced on a daily basis. However, I have become cognizant of its tremendous value as I navigate through the different aspects of life.

My journey with Lupus has led me down a path in which I have rejected excuses and mediocrity in exchange for excellence. Every accomplishment I have made, I owe to God, support from my loved ones, and the unwillingness to lay down, roll over and play dead. I have pushed myself to heights I once thought unreachable, just because if I didn’t, it would have meant that I allowed Lupus to win. So, although I struggled mentally and physically daily and was very often hospitalized, I worked through pain and I put in 10 times more work in the different areas of my life, than I did before I was diagnosed. It was joy unspeakable to graduate high school, to stand as the valedictorian at my university graduation ceremony, to walk across the stage to collect the Prime Minister’s Award for Academic Excellence in Jamaica, to share my story with the world, to have my own website, to become an associate clinical psychologist at 25 years old and to get married to the love of my life. For those accomplishments and all the others in between, it was like saying to Lupus, “Even though you tried your best, you lost…. again and again and again. In your face sucker!!”

And that is what today is for me. It is a celebration of 9 years of beating Lupus. It is a festivity to commemorate overcoming, thriving, living and loving, in spite of and because of Lupus. And for the most part, I am happy. But as the sun shines on the “S” on my chest and the beam of the rays reflects my inward glimmer, the shadow of betrayal, frustration, loss and exhaustive sadness stands behind me. So much pain, grief and loss. I have lost five too many of my beautiful butterfly sisters to this disease. I feel cheated of the opportunity to have a healthy life and the luxury of making plans or decisions without factoring in a million things. I often wonder what my life would be like if I did not have to fight Lupus every day. Indeed, it has been 9 years of struggle, pain, fatigue, complications, frustrations, “cya badda’s” and almost give ups. The struggle is so dishearteningly real.

So while I celebrate, I honestly would like this to be my last year of living with Lupus. I often have a conversation with God where I tell him that I get the point, I have learnt and grown and I have metamorphosed, so if He would be kind enough to heal me now, I would be vivaciously grateful.  Mi swear mi glad bag wudda bus!

But though I hold onto this hope, I know that if there is a tenth, eleventh, twentieth, fortieth or sixtieth anniversary, I will still be achieving, loving, winning, slaying and kicking Lupus’ posterior all day, every week, for every month in every year. I am also painfully aware that as much as I conquer, I struggle. Notwithstanding, every year my faith becomes more fervently grounded in God, every year my support system grows, and every year I evolve into a stronger and wiser version of myself. Every year, I walk further into my destiny.

So then, happy anniversary? Hell yaaaaaaassss!!!

One more year pan di bugga!!! 😜 💁🏽 😜

By: Shoyéa- Gaye Grant-Massicotte ©

Nine years of slaying 💪🏽💃🏽 👊🏽