For Squeeky

So I have been trying to write this article for a couple of days now… Still struggling…

Three years ago, I lost someone very important to me. So important I felt my heart being shattered into a million pieces slowly and continuously and could do nothing about it. It felt as though someone pulled the rug from under my feet and I fell flat on my heinie,with nothing to hold on to in order to pull myself up again. Time makes the pain more bearable but if I should be totally honest, my heart has never fully gotten back the place of being whole.  I lost my fighting partner and that shook my world to the core. For the first time in my life, death became real to me.

On the 30^th of September, 2012, Javier “Squeeky” Spaulding’s spirit-so beautiful and liberating- left his body after being diagnosed with Leukaemia, only months before. I remember one of the hardest things I ever had to do was stand at his funeral and pay him a tribute. It took me a very long time to complete that tribute because writing it meant facing the reality of his death. Also, the papers were repeatedly being soaked by my tears so much so that blurred ink would deem my piece unreadable. Even further, I seriously contemplated not going to his funeral because it meant saying goodbye to someone I loved dearly. It meant saying goodbye to a part of myself. It meant accepting he was gone. I was not ready… and I don’t think I will ever be.

In the end, I decided to attend his funeral, and I must admit how proud I am for holding myself together. I did a splendid job giving my tribute, sharing happy memories and even laughing at some of them. I did a lovely job at smiling at strangers and shaking their hands. I did a great job at hugging his family and friends and encouraging them to be strong…. But when I got home, my ability to hold it together abandoned me, the vessel of my emotional stability ruptured and I crashed and crumbled…hard. I remember crying for hours until my head felt like it would explode. Even then, there was nothing I could do to contain the outpour.  I remember feeling so angry and betrayed. At one point I was lashing out at God, and at the next, I was desperately begging Him to just make the intolerable ache in my heart go away… or even lessen a bit. No pain that Lupus subjected me to, hurt that much.

Squeeky’s death was the beginning of what would become a series of painful losses. After losing him, I lost three Lupus sisters and my godfather- all of whom I shared close relationships with. I feel like I was never given the opportunity to amply grieve any of them because just as I was getting into dealing with the loss before me, another death came along.  After going through all of that (and admittedly, still grieving), I must say that I do not hate death. I don’t use the word “hate” often. Usually, it is so potent. However, this time it is mild and inadequate to capture how I feel. I could probably say that when I think of death, I feel detestation, repulsion, hostility and utter resentment. Truthfully though, I’m not even sure if the word has been derived yet.

Even though it was so difficult to write a tribute for Squeeky, I felt I owed him that much for changing my life. Since then, I continue to write a tribute to him every anniversary of his death. Last year, this was my tribute to him:

“It’s been a long two years without you. Not a day has passed that I haven’t thought about you or remembered some crazy thing you did or said. It hurts that you are not here anymore but I am extremely grateful I got the chance to call you best friend, to call you my brother. Thank you for being a living example of true freedom. Thank you for showing me that I should never be limited by a disease.

You have left me with so many beautiful memories: deep, meaningful, enriching and unforgettable conversations, happy moments, sneaking food in hospitals, losing our hair together, making jokes about steroids and chemo, keeping strong when most people wouldn’t have a clue how weak we felt and staying up so many nights talking about nothing and everything, when pain stole our ability to sleep.

In the midst of losing our health, we formed an unbreakable bond that has defied even death. It brings me great peace when I remember you saying, “We were friends before this life, and we will be friends even after.”

I can still see your smile and I can still hear your voice. I’ll keep a part of you with me, and everywhere I am, there you’ll be. I will love you forever, Javier… And I would do it all over again.”

This year, writing this article is my tribute to him. I honour his memory by making the world aware of the fact that he had an enormous impact on my attitude of defiance, the positive perspective I have chosen to take and my decision to do everything in my power to unrelentlessly and unapologetically kick Lupus’ fanny on a daily basis. He was the first person who implanted the very crazy idea which I have now come to believe wholeheartedly: The idea that I can change the world…with my story, with my spirit, with my love. Every time limitations get me frustrated, the complications get overwhelming and the pain becomes unbearable to the point where I think of throwing in the towel, I can still hear him say, “Shoy, giving up is not an option”.  Even in death, Squeeky continues to teach me. And here are a few lessons I have learnt:

The first is that I have the capacity to and I should connect with people. The idea of connecting can seem strange to some people but for me, it is the most beautiful thing two people can share. When I say ‘connect’, I mean meeting people at the depth of their core, where spirits intertwine and the bond of affinity that is shared surpasses the physical.  Sadly, some people go through their entire lives without knowing what that feels like. Some persons nurture the notion that this can only be found between lovers, and never explore the possibility that such a bond can be shared between family and friends. Some people have difficulty adjusting to such an idea since it was not included in our socialization. Nevertheless, there are those of us who open our hearts, even if we are afraid, and become forever transformed by the experience. Connecting with Squeeky propelled me to form a Jamaican Lupus Warriors group. This, I count as my most prized accomplishment as it relates to Lupus. These ladies are absolutely amazing and they light up my life every single day. It can be difficult to explain to someone outside of the experience but something happens when, as a group, we laugh together, cry together, go to hospital visits together, encourage each other and hold each other’s hands.  Something happens when we fight Lupus together: We become a part of each other. So even though the deaths of our sisters broke our hearts, I would not trade these ladies for the world. Especially because one of them helped me to become cognizant that truly connecting with someone should not be dependent on the idea of permanence (Thank you Nevine Anderson!). We sometimes restrain ourselves from the natural inclination to connect with someone because we can’t see a favourable long-term outcome or we fear that the person may die. It is very important to realise that sometimes the connections we make may only be for a season or a reason. At the end, even though the pain of the loss may seem unendurable, the experience, if interpreted positively, can thrust us into the evolution of our better selves.

Secondly, I learnt that I will never die. Yes it is true. I will not. Dying means ceasing to exist. That’s not a possibility for me and I will explain why: I have chosen to love deeply and truly, and to fully embrace the connection I feel with the people whose spirits I am drawn to. In doing that, I have given every person I connected with a part of my soul.  Therefore, even if my physical body is not here, a part of me still lives as long as they are alive.  Odds are, they will probably pass on some remnants of me to someone else that they love. It’s not so much about being conceited, but it is about conceding that death does not have as much power as we give it.  It is about gaining the insight that we can change the world by loving, living and overcoming our obstacles. We change someone’s life, and that person changes someone else’s life because of our impact, then that person changes another person’s life…. In a ripple effect, we are changing the world. In actuality, we never cease to exist. So Squeeky changed my life, and hopefully, I have changed your life by reading this, and much more so, the lives of the people I love and have touched with my story. So I will let you answer this one in the comments section or via emails/ messaging…Will I die?

The third lesson is that life is short. We say it all the time but how many of us really take it seriously? How many of us realise that all we truly have is NOW? We say we do, but we still procrastinate and postpone. We still allow fear to make us bite back our words, swallow our emotions and stop trying. We cower and give opinions and precepts the authority to force us deeper into the cemented delusion of pretense, dysfunction and discontentment. We still constrain ourselves from diving into the deep, leaping out in faith, transforming a fantasy into reality and taking a risk our hearts want us to. Loving Squeeky has taught me the ultimate lesson that the most important thing is not getting to the top of the mountain… It’s actually the climb. Living life is about enjoying the journey.  Of course, we cannot disregard the future. But what will the future look like if we do not embrace the now? .

Squeeky is a part of my soul and I carry him in my spirit every single day. Today, I am sharing him with you. If his journey, through my journey has any impact on you, my friend will never die.

Shoyéa-Gaye Grant ©