Naked

Since 2010, when I started writing for the International Lupus Magazine and became the Lupus Voice of Jamaica, I have been telling my story to the world.  Initially, it was very difficult but every time I shared my story, it made me a little stronger and a little more courageous.

In the past, whenever I told my story, I believed I was being completely open. With every opportunity to share my story, I slowly stripped away the pieces of pride and fear within which I was clothed until my whole story was told. Or so I thought. In retrospect, I see that my openness stopped at the entrance of my vulnerabilities. For the longest time, I have been telling my story wearing a bikini. On the waterfront of this aspect of my life, I had no reservations being revealing… to a point. I still had to leave my most sensitive parts covered. Today, I stand before you totally bare. This is the naked truth about my struggle with Lupus. This is the whole story. This is what you may not know:

I kick Lupus’ derriere on a daily basis. I get up some mornings, I put on my attitude and say, “Lupus, you messed with the wrong diva. Try me, if you dare!”…. But sometimes, beating Lupus doesn’t mean I put the ‘S’ on my chest and attack it head on, though that sometimes may be the perception. Sometimes, many times, too many times, the extent of the pain that jolts me awake is so potent it cripples even my thoughts. Sometimes beating Lupus means taking 3 hours to get out of bed. Sometimes beating Lupus means crawling to the bathroom on feet as heavy as lead and with joints that feel as though they are in desperate need of some WD40.  Sometimes, beating Lupus means falling asleep on the toilet from throwing up continuously, and deciding to perceive that as a means of conserving the iota of strength for the upcoming episode of barfing. At those times, I do not feel strong and I do not feel like a fighter. I feel tired and frustrated and weak. And yes, I want to give up. However, I do not. Giving up is not an option for me. That is my tagline. The naked truth, however, is this: I do not think I am strong many times and just because I do not give up, does not mean that there are not times when I want to. It just means that I never allow myself to. Or more often than not, the people who see more strength in me than I will ever see in myself, have not and will not allow me to.

My struggle is also a religious one. While I have faith in a God that heals, I also acknowledge that He does not have to heal. So who am I? Am I Job or am I Paul? Will he heal me completely or will he refuse to remove this thorn in my flesh to demonstrate that His grace is sufficient to keep me? Contrary to science, I believe wholeheartedly that one day I will not have Lupus anymore. However, if God does not heal me, I will still serve him and try my best to walk into my divine destiny. The naked truth, however, is that the possibility of being a Paul and living with Lupus scares me to death. I do not like Lupus. As a matter of a fact, I detest it. It keeps taking and taking and taking. It is conniving, unforgiving and cruel. While I appreciate the fact that it brought me to God, propelled me into my destiny and ultimately, transformed me into someone with depth, love and appreciation of life, I think it has served its purpose and I want it gone.

I sometimes wonder what my life would be like if I did not have Lupus. If I have achieved so much with Lupus, how much more would I have achieved if I did not have this daily struggle to contend with? For example, when I was in grad school, if I got an A for a course, I often wondered if I would have gotten an A+ if I did not have to compensate for brain fog that resulted in me forgetting an important point in a presentation or if I did not have to be curled up in pain while I was studying. Certainly, I would have done better if I did not have to write the exam with swollen and achy joints that prevented me from writing as fast as I could and in doing so, prevented me from transferring everything in my brain to those sheets of paper. Some people would say I should be content with the A. However, I am perplexed by the notion of having an output that is not reflective of my potential in any area of my life.

I have the most amazing and supportive loved ones who make this journey worth it. The naked truth, however, is that it breaks my heart to see them hurt because I am sick. Also, I feel inadequate when I am not able to assist in making their lives easier, from simple tasks (eg. washing the dishes) to more important ones (eg. taking care of them when they are sick). If I can wash the dishes, then my sister can spend a little more time studying for her ACCA exams. For both my immediate family at the moment and the one I will have when I get married, I want to be able to take care of them when they are sick. Sometimes I am not able to do so, not only as a result of Lupus complications and flares but because they may have something contagious. What does that say for my future as a wife and a mother? How do I keep away from my child(ren) and my husband every time they have the flu, for example (not to mention something more serious), when I should be the one nursing them back to health?

I believe that I will live for a very long time. The naked truth, though, is that I have read tributes at the funerals of friends who believed just as much that we would grow old together.  So while I embrace longevity, death is still very real to me. Therefore, for the time I have been given, I refuse to lie down and play dead. I refuse to merely exist. So I will live and love. I will chase my dreams and follow my heart. I will not wait on time because time is not waiting on anyone.  So if I seem to be moving at a fast pace, don’t mind me. It’s just that I have encountered death so I value time. Irrespective of the length of my stay on earth, I will not die an unlived life.

If I want the world to hear my song, I have to sing the song in its entirety…And this is my complete song:

As much as I conquer, I struggle. Even though I have succeeded and excelled, my true potential has not been realized. While the support of my loved ones has kept me going, I am overcome by the feeling of insufficiency when I see that I cannot give back to them as much as they have given to me and as much as they deserve. Despite the fact that I have faith I will be healed, the possibility that I may not, is a terribly frightening and unbearable thought. Although I believe I will live to a ripe old age, I know death does not pardon anybody.

With God, love and support, I will never stop fighting and excelling. Even when I feel weakest and even when I want to give up, I will not. Nevertheless, when you see me in my Superwoman suit, clad with my boss lady attitude, know that it probably took me hours to get out of bed and another couple more to pull it over my stiff and aching joints. When, by force, I take a day to rest, understand that it is not a luxury. It is only because I have pushed myself past my limit and my body has started to crash or will crash if I do not slow down.

And when you see me smiling, know that my mental and emotional battle is just as taxing as the physical. Understand that I do not know what it feels like to be pain-free and I have to put much more effort into doing seemingly simple things, such as walking up a flight of stairs, getting up out of bed or writing with a pen, than someone who is healthy… Even though I may have mastered the art of masking my struggles.

I have this crazy idea that I want to impact the world with my story. But to do so, I have to tell the whole story…. The naked truth.

This is my naked truth.

And if some part of my naked truth resonates with yours, then it is also partially your truth. Maybe it is time to remove the façade so that the world can see our strengths as well as vulnerabilities. It matters not on which they choose to dwell. What is most important is that the story is told.

And without either, the story is incomplete.

Shoyéa-Gaye Grant  ©