October is Lupus Awareness Month in Jamaica and it seems very fitting that I write yet another tribute. The last article I wrote was a tribute to my best friend who died from Leukaemia three years ago. While this is a follow up, I am sort of changing things up a bit. This time, I am not writing a tribute to one person, but to group of young ladies. This time I am not writing for someone who died. I am writing a tribute to people who are alive to read it.
In my last article, I briefly mentioned my most prized Lupus achievement. It is now my esteemed honour to elaborate:
Over a year ago, I came up with an ingenious idea. Now, my claim of ingenuity has validity. Here me out… then agree: A good idea is one that you can reap some benefit from… but a brilliant idea is one which allows you to reap benefits every day. You know you have outdone yourself when you come up with an idea that not only changes your life, but the lives of the people you care about presently and will care about in the future. That grand idea was starting a WhatsApp group with a couple of young ladies I met who were diagnosed with Lupus. Living with Lupus has given me an intimate understanding of the daily struggles so I knew how important it was to have constant support. Not once in a while. Every day, easily accessible and genuine support. I knew how important it was to have not only persons who care, but persons who can relate. I knew how life-changing that can be because I experienced that with Squeeky. Today, the “couple of ladies” have grown to twenty-five (25).
We talk every day. We share our strategies, our knowledge, our stories, our struggles, our fears, our accomplishments, our smiles and our hearts. We laugh together, cry together, sing to each other (Nana and Nevz) and we make jokes with each other and at ourselves that only we are allowed to. For example, those brain fog jokes are not the least bit funny if they escape the mouth of someone who hasn’t been in the middle of a conversation when his/her brain decides to erase the last five minutes of his/her memory. Of course, we have our internal squabbles occasionally but our love and loyalty are never questioned. We go out together (not enough) and have hospital get-togethers where we visit our sisters who have been admitted and accompany each other to hospital check-ups. Those check-ups though… I think passers-by may sometimes think we are crazy. So here we are, in a hospital waiting room filled with sick and annoyed people, and we seem to be the happiest people there, laughing and talking and hugging each other as if we are at a family reunion. Then one of us answers the phone, disappears, then re-enters with another member of the family, and we start the hugging and talking and laughing all over again. Then we start taking the pictures…. And more pictures… And some more pictures…
Just as we have shared some beautifully, joyous memories and have the countless pictures to prove them, we have had to hold each other’s hand when it is needed most, and hearts to keep them from shattering. We have been through terrible news together where all we could do was cry with each other. We have had occasions where hospital visits weren’t so joyous and we smile and hug our sister and let her know we are there, then breakdown outside the room. We have been to the funeral services of our sisters, and given tributes with our words, songs, music or presence, while we are falling apart. In a church filled with people, we have walked up to the casket, one by one, with all the grace and strength we can muster, and pinned purple ribbons on the cushion that would go in the arms of our sister whom we never imagined we would have to say goodbye to. We have had occasions where some of us never got the opportunity to bid our sister farewell. We have days where we cannot get up out of bed. Days when the pain makes us call for death, even secretly. We have days where Lupus sucks us dry emotionally, physically, financially, spiritually and socially. Many people do not and cannot comprehend how much this disease takes from us and out of us. Some of us have been treated with scorn and indifference. Some of us have been discriminated against in one way or another… But we still get up. It may take us two hours, the whole day or a couple of days, but we get up… And sometimes it takes holding on to the hands of our sisters and using their strength to pull ourselves up.
This article is a tribute to every one of the ladies who are in that group: Those who talk every day or almost, those who drop a line once in a while, and those who never say a word but read the messages all the time, and those who are on a break; the “ole foot dem” and the new-comers. You ladies inspire me every day through your bravery. Whereas a few of us are open about our journey, so many of you have remained silent. Your reservation does not take away from the fact that you are courageous, strong and beautiful…But I think the world should know your stories. Some things are just too good to not be shared. I understand, however, that some of you may not be ready. Whenever you are though, I am positive that you will blaze a trail and create a ripple reaction with your inspiration. Until then, I can’t help but give the world just a hint of your greatness.
These ladies are by far, some the bravest and strongest persons I have known. I am going to share just a bit of what I have the privilege of living with on a daily basis:
· Unbreakable spirit who was admitted and was about to begin chemotherapy, but made the time to take a couple of selfies.
· Resilience who barely escaped the jaws of death and was bedridden, but decided that she would return to school before the year ends… and she has.
· Positivity who, when half of her body was numb and she had to be waiting for hours in a hospital where she was not given the attention she deserved, comforted us by telling us not to worry and she was relaxing
· Faith who had the double whammy of battling her own complications of Lupus while she fought with her husband to battle his cancer, still raises two beautiful children and holds her family together.
· Determination who decides to go to group meetings and classes, even though she has a fever, the flu, dry eyes and achy joints.
· Beauty who, despite the marks on her skin, radiates so brightly even the blind can see her elegance. She makes bald look so gooood!!!
· Hope who walks the runways with such confidence and grace, that onlookers can never tell that she has lost her mother to the same disease she is now fighting, but is determined to make to foundation to help her Lupus sisters.
· Purpose who took the bar like a pro, even after Lupus has affected her Central Nervous System, and now proudly adds “Lupus Advocate” to the achievement of becoming a lawyer.
· Love who knows all the logics and numbers, has embarked on the journey to create her own accounting business. Nonetheless, she demonstrates that she operates from the depths of heart and gives nothing less than purely genuine loyalty and understanding.
· Strength who holds it together and fights through university and high school, even after the death of her father, lack of support from loved ones, confusion and struggling to accept that life has changed
· Brilliance who has had her childhood taken away but still manages to top her class even after missing exams and classes.
· Optimism battles the complication of this disease, which knocks her down sometimes, but even then, she is always ready to give an encouraging word from God and never allows us to forget that everything will be better.
These ladies are incredible. I tell them that I love them all the time, but in truth, that statement might not encapsulate the breadth and width of appreciation and compassion I feel for them. Every one of them adds joy to my life and I feel as though we were destined to be a part of each other’s journey. It gives me so much comfort to know that I can send a message at any time of the day or night, and I will not be alone. To know that if I am scared, I will be assured that it will be ok and no matter the outcome, I have my soldiers fighting with me. It gives me so much peace to know that if I am troubled, I can have a calming talk and a daily devotion. If I need information, I will be given strategies and suggestions of books and websites. I feel safe knowing that they have my best interest at heart, even if I am convinced that I will die if I do not devour a waffle cone or double scoop of Devon House Icecream. I know it is with that same concern that I will be cussed out for doing or eating something that is not healthy but soooo very appealing. So while I always have an outward rebuttal, then cower in submission, inwardly, I am consumed with appreciation. I absolutely love the fact that these ladies are dramatic and hilarious and on numerous occasions, have caused me to interrupt boring meeting with outburst of laughter that I try to camouflage as coughing, but then eventually (and happily), had to excuse myself because of my terribly irritated sinuses.
My desire is that we will always keep in touch, irrespective of where life takes us, even if WhatsApp is no more. I hope we continue sending each other tonnes of strength, love, support, laughter and butterfly hugs and kisses when we need them most.
My darling sisters, I know it is often not easy for us, but let us take comfort in the fact that we will never have to walk this journey alone. You have left an indelible mark on my life and know that no matter where I am, you will always be a part of my journey. You have given me so much. Too much to keep all to myself. I am overwhelmed with love. So I am therefore taking this opportunity, to share some of that love with the rest of the world.
PS. Let’s start writing tributes for the living.
Shoyéa-Gaye Grant ©
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