You are not Alone

You are a teen,

Your future should look bright.

Yet it is almost impossible to look through all the darkness

To find the tiny beacons of light.

Teenage years are not filled with adventure,

Risks, memorable experiences and lessons learnt the hard way.

Medications, sunscreen, fatigue, aches and pain…

Those are what make for an ordinary day.

You are a mother whose heart shatters

Every time your little girl has to see you in pain.

When your baby boy’s only wish for Christmas

Is that “Mommy will be healthy again”.

You are a wife, who dreams of seeing understanding in his eyes,

To have him hold you and assure you that every thing will be alright.

You are a wife who is blessed with tender love and affection,

But who feels he deserves more and wishes he did not have to go to go through this fight.

You are a husband and a father,

The 10% minority they say.

Society dictates that you put a reign on your emotions,

Even when pain melts all your defences away.

You are a girl, a lady, a woman, a fighter,

You are a daughter, a sister, a friend, a mother.

You are a boy, a gentleman, a charmer a warrior,

You are a father, a son, a confidante, a brother.

You are black, white, Asian, Indian, mixed,

You are witty, moody, creative, angry, jovial, smart.

You are emotional, outspoken, brave, loud,

You wear your emotions not on your sleeve, but in your heart.

You fight with all your strength, then Lupus knocks you down,

Hiding from the world, you cry, you scream, you moan.

Even though you feel helpless, frustrated, isolated, scared

You do not walk this path alone.

There is someone else, who knows exactly how you feel,

Who cries and aches very much like you do.

There are others who fight this battle every day,

Persons who can relate perfectly to what it is that you go through.

He lives in West Africa, North America, East Asia, Australia,

She is helping the homeless in Rome

They are from rural areas, garrisons, the cities and towns

We are from the Caribbean, we are not alone.

Fighting Lupus can seem like an impossible task,

And what makes it harder is trying to do it on our own.

As an army we can overcome great obstacles,

I am not, we are not…No, you are not alone.

                                                                           

                                                                           By: Shoyea-Gaye Grant ©

Lupus and Relationships

Lupus and Relationships

Ƹ̵Ӝ̵̨̄Ʒ Lupies’ Perspective Ƹ̵Ӝ̵̨̄Ʒ

So, in all my previous articles, I’ve always blabbed about my thoughts and experiences and such, but this one is a little different. On the topic of Lupus and relationships, every Lupie has a different perspective and I wanted to capture each, interpret the findings then share them with you, in the hope that it might help and educate, even in a small way. To do so, I sent out questions to Lupies and their responses have written this article, with me taking on the position of narrator. Here’s a little “som’n som’n” about Lupus and relationships from us Lupies:

Too often, many persons have failed to come to the truth that the effects of Lupus are not limited to the physical. Undoubtedly, Lupus affects every aspect, crease, crevice and corner of the lives of its survivors… not victims. Its impacts are reflected physically, socially, spiritually, emotionally, psychologically and all the other “ally’s” known to man.

The million dollar question now becomes: “Does Lupus affect relationships as well?” Oh yes it does. Personally, I can testify to this but upon further research, I have discovered that this is an issue widely shared among the Lupus population. However, the nature and extent of the effects differ from person to person and from situation to situation.

In some cases, Lupus has affected whether or not persons have decided to pursue a relationship. In my last article, I stated that while persons might not have a problem with the “idea” of having a partner with Lupus, they sometimes do not know how to handle the “reality” where they have to deal with it on a daily basis. Being hurt by persons who walked away because of Lupus is not uncommon. While many share the same experience, one sister sums it up all in one sentence.

“I was in a relationship a few years ago when I got diagnosed, with someone who left me because of my illness.”

Such heartbreaking experiences have killed the hope of having a relationship for some Lupies. On the other hand, others have decided to jump over that hurdle, and again, launch into the deep, living a dream for those who may be too hurt to do it for themselves.

First of all, Lupus does affect the way we relate to persons on the basis of revealing the truth about our health. For some, admitting to having Lupus was never an issue, since diagnosis came in the midst of the relationship.

“I was older and already in an established relationship when I got Lupus. [He] has seen everything this disease has thrown at me. I was worried initially that he would leave me, but he has not.” 

“Well, my husband was OK with that. We are together no matter what... It took years to get diagnosed. We continued our lives as usual; however, we will deal with it the best we can.”

For others, admitting to having Lupus is a very huge milestone to get past.

“I find it really hard to tell someone, anyone, for that matter… I was worried about being treated differently, of being judged, and of what would result. But when it is someone you care for or love it is even more fearful as you are afraid they may not love you BECAUSE of lupus, or because they do not want the "burden" of it (don't you wish we could CHOOSE to have the "burden" of it placed upon our shoulders LOL)”

“Well, whenever I meet new persons and we seem to be getting close, I see the need to mention some personal aspects of my life...then I listen keenly to their reaction. The way they react influences my feelings towards mentioning further about lupus and telling them that I have lupus. It takes a lot out of me; simply because I’m afraid they will not talk to me, judge me or feel pity towards me.”

“I only tell them IF it appears (factually! Not from the biochemical place of insanity called infatuation.)”

These responses maybe so common because of the previous reactions Lupies have gotten after they decided to be open about having this disease. There are instances where the bulk of the responses has been negative, to the point of grave lack of sensitivity. One sister states:

“Some people don't care; others don't know what it is and feel that it means
nothing. Some say, "Well, it's not Cancer."”

There are cases too where the responses have been a mixture of both negative and positive.

“I have had a wide variety of responses from those are not accepting and do not want to understand, to those that have really not thought twice about it and treat me the same they did prior to knowing, and care more for me because of it and despite it.”

To get in a little deeper now to the meat of the matter, there are indeed instances where, upon learning that the loved one has Lupus and what the actuality is like, the spouse decides to stick it out. The success of a relationship is based on constant hard work… and sometimes Lupus makes it a whole lot worse.

“My husband knows I have Lupus, but really has no idea. I've been fatigued for as long as we've been together so that is the norm to him. He lives with chaos and cobwebs because it’s all he's known... He's not good with the caring thing though and I have to work off my own flares, no tea, toast and sympathy is ever on offer.”

“It affects me when I am having a flare. I only want to sleep and I don't feel like a human being. Fatigue is awful and I feel my life is being wasted in bed while healthy people are having a great time. I mean, my husband and I can't do things because I'm out of it.”

Even though there are no fairy tales in reality, and all relationships have their problems, there have been cases where Lupus, try as it may, is no competition for the love that fights its way through.

“My current BF was so embracing from the moment I told him I have Lupus. He only wanted to help make my life better and easier. He wanted to know how he could help, and began researching to educate himself a bit more on it, so that he could be there for me. He has been through a lot with me even prior to dating. With losing my hair and all the ups and downs lupus can throw your way, he has never once gotten frustrated and taken it out on me or lupus, but rather has stood by me and offered love and encouragement.”

“Telling my husband was not difficult because we were best friends before we started dating. I, however, felt that with all the challenges of Lupus I needed to end the relationship. He would have none of it and for 3 years we struggled because all I could see was all the things he would be giving up; a normal life with a chronically sick wife, with no prospect of having children, I would lose my hair, features and my exact words to him were, “I would swell up like a mudfish!” With all that said, he made me promised that I would marry him… mudfish, no hair, hospital bed and all.
Eleven years and 2 kids later, I give God thanks for all His blessings.”

The latter story brings me to a point which is all too familiar. Sometimes it is not the partner who walks away but the Lupies who give up or push away their loved ones. We get insecure and the reality that we are pulling someone we love into the stress, pain and sometimes disappointment that come along with Lupus, may cause us to be reluctant to be in relationship.  However, if someone is willing to look past Lupus to find the person within and love that person, we should not deny ourselves of that chance.

“It was the only time I had made up my mind to give up. He had seen me at my best and at my worst, but I decided I’d do him justice. I thought he didn’t know what he was getting himself into and that he was selling himself short. Just before I was about to break the news to him, he kissed me on the forehead and looked into my eyes.

He said, “I know I’ve said it a million times but you have the most beautiful eyes I have ever seen… You are my story.”

I knew then and there that it was not only about me and what I thought. It was too late. I had already embarked on a powerful and dramatic journey… with him.”

There are even times when Lupies, or even the partner, knows so well how to handle the situation of being with a Lupie that he or she actually uses humor to shed some light on something that is so often overpowered by darkness… Even though the humor sometimes drives us crazy.

“When I stand my ground on something and he disagrees, HE pulls the Lupie card! He will say, “Oh honey, you are just having a bit of brain fog. We will discuss it when your head is clear.” Boy does that get me mad. And I can’t fight it even though I know it isn’t true because the more mad I get the more he feels he is right...arghhhh!”

In closing, I will leave my conclusions with you:  Despite the fact that Lupus affects a relationship, it does not determine its outcome… the individuals involved do. I have read some really amazingly beautiful stories but also, some very sad ones. This reality has driven me to delve beneath the surface of this issue and question whether it is in fact “Lupus” that is the issue or the persons involved. Yes, Lupus is a pain and it does impact a relationship, however, the nature of the impact, whether negative or positive, and the extent of such impact, is largely dependent on the persons involved and their attitude, personality and the degree to which love is present, and thus shown.

Not the love that is great when all is well or the love that does not allow room for imperfection. Not the Love that is conditional.

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.” ~ 1 Corinthians13:4-8

If this is the criteria by which love is defined, doesn’t it bring into question if it is in fact love that we think we are experiencing? Love is not something we say, it’s something we do. Thus, if it looks like a duck, quacks like a duck and walks like a duck, it is a duck. If it does not look like a duck, quack like a duck or walk like a duck… Hey! Probably it is NOT it is a duck.

Live. Love. Laugh. Lupus.

PS. For all those who willingly shared your stories, words are inadequate to express my gratitude. This could not have been possible without you!

Shoyea-Gaye Grant ©

Jamaica,

West Indies.

The Person Within

Within the pain and agony of Lupus, is wrapped the many life lessons we may have never learnt any other way. Among the most important, is the value and meaning of relationships. Lupus not only teaches us how important and necessary relationships are but it goes further to make a clear distinction between the persons who are our true, few roots, that keep is strong and grounded,  and the ones who are just leaves; necessary for us to grow, but who we will shed after a while.

The relationship between friends:

There are those who will only hear that you haven’t been so well while there are those who will be angry with you for not calling them in the middle of the night when you had a Lupus meltdown. Friends who understand, who don’t but are willing to listen and be there, who help us up through the pain, are so very rare. Personally, this has taught me to hold on tight to the few I have even if we don’t communicate often and even if we are countries apart.

The relationship with family:

We often have a very large pool of relatives but very few family members. It takes much more than having similar DNA and sharing the same last name, to earn the noble and worthy title of being called family. Family does not mean we will always see eye to eye. It means, however, that we stick together in times of crises and that counting on each other is a guarantee. Not mere relatives, but family, are the persons who are always supportive and who offer a helping hand, even when we feel like we can do it on our own.

The relationship with the significant other:

There is something that always amazes me about this particular relationship. Maybe it is because Lupus is not contagious but very often, many persons, at first, will say they have no reservations with dating or marrying someone with Lupus. Of course, give them just a taste of what Lupus is really like, show then just the tip of the iceberg of what we don’t show the rest of world, and most of them have broken Usain Bolt’s 100m world record as the fastest man alive. The ones who know what we face on a daily basis, who see us at our lowest point, who put up with us when we are grumpy and moody, yet still love us and want to spend the rest of their lives with us are heaven sent. Lupus shines the light on the very few diamonds in the rough who are willing to go through the storm with us.

Relationship with God:

Indeed it is often when we have come face to face with death, when science nor superstition cannot help us, that we find that life and hope are eternally hidden in a power higher than human understanding. Someone who knows us inside out yet loves us, who we reject but who stands waiting at our heart’s door for that day when we will open and let Him in, a King who humbly came to shine the light of love in this dark, cold and dying world, may be too much for some human minds to fathom. What cannot be debated though is the fact that there have been and will be times when no earthly power, love or friendship, will be able to take us through the valley of the shadow of death.

All these relationships have been the rope we hold on to for dear life (literally) since we have been thrown in the sea of Lupus. However, one relationship equally important to the ones mentioned above but sometimes ignored is the relationship with the person within; a relationship with one’s self.

The truth is that no matter how much persons love us and promise to always be there for us, they won’t always be there. They can’t always be there, no matter how hard they try. They are humans, and they will be busy, tired, stressed, frustrated or maybe want a break, just as we often feel. Sometimes circumstances, distance or other factors may present themselves as the obstacles that prevent them from being there for us, but for whatever reason, there will be times when it’s just us.

There is the other side of it too, when they are there physically, but they cannot be there for us the way we want them to be. Truth be told, sometimes we cannot even figure out or express how exactly it is that we want them to be there. There may be times when, try as they may to understand what we are going through, they just do not because while they are affected by it, they are not living Lupus.

For some of us, our lifelines sometimes do not understand the depth to which they are needed but while that tears us apart and drives us crazy, we have to appreciate that they love us and they try. (I am only so rational and calm now because I am not screaming in my wet pillow at the moment… But hey, being rational works best when you are not in the heat of the moment don’t you think?)

It has reached and it’s going to reach the point where we have to hold our own hands, where we have to hug our own selves and wipe our own tears. It will reach the point where we will have to be the ones to whisper in our own ear, to that Lupie crying inside, “You are strong enough… and I am right here with you.”

If we cannot depend on the one person who knows us best and who is always with us, who else can we depend on? While we cannot refute the fact that we need God and our loved ones to take us through this journey that is often a hell-way, we must find the friend, the confidante, the fighter within, and seek 
to build a relationship of dependency with that person.

We must love ourselves before we can love others. We must respect ourselves before we can respect others. We must value ourselves before we can value others. We must be able to depend on our inner selves for support, before we can be dependent on others.

Shoyea-Gaye Grant ©
Jamaica,
West Indies.

Visit Shoyea-Gaye's 'Lupus Butterflies Jamaica'

Mission Healthy ALPHA

I have certain defining characteristics. From the list, I will draw on the ones given the highest prestige: I am a Christian, a lady, a Lupie, a daughter, a sister, a loved one, a friend and I am an Alpharian. This last title, and one I wear most proudly, comes from the fact that for all my life, a little place on South Camp Road in Kingston, Jamaica, called ALPHA, has been my second home. My source of education came firstly from Alpha Infant, then Alpha Primary, followed by the Convent of Mercy Academy “Alpha”, otherwise known as Alpha Academy. Thus, it has been written in stone: I am an Alpharian.

Alpha was founded by the Sisters of Mercy on May 1, 1880, and since then, has taken on the huge responsibility of not only offering education to the younger population, but also, that of converting little girls into young ladies. I am not just bragging and boating about this noble institution because I absolutely love and miss this place (well, not totally) but also because some of the products of this factory has seen it fit to extend their hands of kindness and do what Alpha taught them best: to give back.

The Florida chapter of the Alpha Alumni (Past Students’ Association), for two years now, has made the dream of an annual health fair, a welcomed reality: Mission Healthy “Alpha”. This was hosted on the Alpha Academy campus. The students and teachers were given the opportunity to check their blood pressure, blood sugar and cholesterol levels along with height, weight and sight. Additionally due to the fact the Alpha is single sex school (only females), students and staff were given “We Care Packs”, containing all the necessary items a female should always have, such as sanitary napkins, dental floss and deodorant, just to name a few.

The event was aimed at spreading health awareness in many different areas such as dental protection, balanced diet, healthy bones, acne, breast cancer and most surprisingly, Lupus. While a very pleasant one, it came as a surprise because Lupus awareness is not common in Jamaica. While organizations and individuals are trying, the level of ignorance as it relates to Lupus is quite alarming. In a country with such a high risk of getting Lupus and with so many affected, so many still do not have a clue what it is. If I had any doubts about that, this health fair wiped them all away.

I volunteered be the informant on Lupus and was thus stationed at the Lupus tent. Those two days will never be forgotten.

As the crowd of students left their classes, grade by grade, the area selected to host the health fair came alive with little ladies in their blue and white uniforms. As each group approached the Lupus tent, books were issued out and students and teachers were advised that it was important that those books be read. I then asked if they knew what Lupus was. Many said they had no clue. The few that did said it was “a skin disease” or “some form of cancer”. The most common response was “I have heard of it. I knew someone with it but they died.”

Even after explaining that the risk factor is particularly high because they are females, the majority is of African descent and they are in their childbearing years, Lupus was not of much interest to them. Even after informing them that many persons in Jamaica are affected, some were still apathetic and one girl even admitted that she did not care much to learn what it was. It was then that I had to do the Official Lupie Duty and do what I was previously terrified of doing. “Lupus is far-fetched idea… I have Lupus”. Response: Shocked expression… “You do?!... What did you say it was again?”

Telling a crowd of people (non-Lupies) that I have Lupus was not an easy task. The first time was the hardest, but every time that followed was a little easier than the one before. Maybe it was as a result of my being an Alpharian and being known by most of them or maybe it was because an issue that remained just a message in the wind was standing before them in reality, but after my confession, the level of interest rose dramatically. They began asking questions about treatment, if it can be cured and symptoms, even before I reached the point of explaining those to them. The questions even became more personal, in that I was asked how I cope, how I felt when I was diagnosed, my age at diagnosis and so on. I had no reservations and it was an absolute joy to respond.

“Rewarding” is too much of an understatement for the overwhelming feeling which follows spreading lupus awareness. However, my most memorable moments were those spent bonding with fellow Lupies. There was this particular lady who was waging a war on her body (Jqi). As a Lupie, one can see when another Lupie is not so well and internally fighting. This lady came to the point where she almost fainted but when offered a seat by a number of worried past Alparians, she took a couple of deep breaths, smiled and replied, “I’m fine”. I smiled too. I have done that a million times.

The Florida Chapter of the Alpha Alumni should be awarded for the wonderful way in which they have decided to give back to their alma mater. On the topic of giving back, many would focus solely on monetary contributions or those aimed at repairing the physical buildings. However, this way of giving back is one that has tremendous benefits and one that covers an extremely important but often ignored area: health awareness.

Alpha has been the source of my education but the most important lesson it has taught me is that giving back is the only way to ensure that someone else moves forward.

Shoyea-Gaye Grant ©
Jamaica,
West Indies.

Visit Shoyea-Gaye's 'Lupus Butterflies Jamaica' on Facebook


First published in The Lupus Magazine by Dirty Dog Media + Publishing

Three years with Lupus… Happy Anniversary?

This same day exactly three years ago, I got the news that has, since that moment, changed the entire course of my life. While lying on a bed that so many others did before me, and in a place that was fighting to replace home, it was brought to my attention that the aspect of my body that should be protecting it, was in fact damaging it. I had an incurable disease that had damaged both my kidneys.

“I’m sorry, all the tests came back positive…You have Lupus.”

It is amazing how one sentence can change everything. Three years ago, I thought my life was over. I could not imagine living through the new aching that I was assured was going to be constant. I was unable to wrap my head around the idea of internally fighting every day and programming my mind to challenge my body that refused to listen to it almost all the time. I could not see beyond the walls of the hospital.

My three year relationship with Lupus has taught me more about life than anything or anyone else could have. It taught me how to have faith, what love is and how to love, what friendship is and how to be a friend but most of all, through some amazing persons (TLM), it has taught me how to give myself to others. Lupus was the path I needed to direct me to my purpose in life. It taught me that no matter what the situation may be, we have only two choices: to be pessimistic about it or to find the bright side, even when it seems so small.

This is not to say that Lupus is a joy. There have been times when I have felt more pain than I could have ever imagined, when I don’t even want to feel the slightest touch from another person. Times when I knew I was going to be sick and begged my body not to let it happen. When the feeling got stronger, I would resort to just hoping it would hold out until I got to the solace of my home. There was a time when my sole dream in life was to just get out of the hospital… to now being that of going through an entire day without feeling any pain at all. However, I refuse to look at the negatives even though there have been so many. There is absolutely no challenge in that, is there? And one thing that Lupus has taught me is that in everything I should fight.

While I am not celebrating the fact that I got Lupus, I must admit that I do not regret spending the last three years with it. It is a bitter-sweet occasion, knowing all the hard times and the pain that comes with being a Lupie, but knowing too, the advantages (Yes, there actually are advantages!!!!) that it brings.

My journey with Lupus has not been filled only with pain but with accomplishments. However, while I am indeed proud to be an international writer for what I deem to be the best magazine ever created ( I assure you, this is not based on bias but rather empirical evidence ) and becoming the Lupus Voice of Jamaica, I hold closer to my heart, the lessons learnt and my maturity, than the achievements.

Because of Lupus, I am not afraid to love with my all. Now the people I love will never have to question if I love them. Because of Lupus, giving myself to people has become second nature. Because of Lupus, my motto in life is now “Carpe Diem”, which means “Seize the day."

While a lot of people say life is short and some may even come face to face with death once or twice, not everyone knows what it is like to be fighting to live, not once or twice, but on a constant basis. The unpredictability of having a flare tells me that I do not have luxury of postponing.

I live, I love, I laugh, I give and I seize the day/moment because I know what it’s like to be at that place where I look back and wish with all my heart, that I could just have another chance.

It is my anniversary, and I am not gloomy about it. While I live with a disease that is characterized by pain and I hold on to the hope that this cup too shall pass, I have the strangest feeling that Lupus is not through teaching me all the things I need to learn.

Three years later, and it completely overwhelms me that the day that I thought I could not look past, all the feelings I thought I could never overcome, has now become a memory… And once in a while I’m given this privilege to cry. Not because of pain, not because of frustration, not because of the feeling of loss…No, I cry because of joy. The joy that only comes with the ability to look back on the battlefield and see that even though the war has not ended and there is much more up ahead, the battle behind me is one I have conquered. I cry tears of joy because I have found out what it really means, not simply to rise up out of the dust, brush off the dirt and begin walking again, but to spread my wings and soar.

Three years with Lupus… Happy Anniversary?

Yes, it is. I refuse to see it any other way. Carpe Diem!

Shoyea- Gaye Grant ©
Jamaica,
West Indies.


First published in The Lupus Magazine

TLM~The Lupus Miracle

I have a disease that has robbed me of my health and the ability to fully enjoy the latter years of my teenage life. A disease that has seen it fit to thrust upon me hospital sleepovers, dishes and desserts of pills, all night parties of pain, buckets of tears and often, fountains of frustration… 


Sounds like I’m moping, wallowing in self pity and counting my losses, doesn’t it? Well… No. Quite the contrary. For I know there are many other persons going through the same thing or even worse, but in addition, have no one to turn to when the world doesn’t understand, or no home, no family. I have been blessed to have, not just one person to turn to, but a group of people; not just one home, but two homes; not just one family, but two families. They call The Lupus Magazine, TLM. I call it TLM, The Lupus Miracle. 


Miracles are dramatic but sometimes gradual. They are sometimes unexpected and sometimes hoped for. They can be seen in the big things, but also in the things so little and simple that they are often overlooked. Miracles come in all shapes, forms and sizes but can be distinguished by the fact that despite differing characteristics, they all have two things in common: They are extraordinary and they are life changing. I believe in miracles. 


Lupus has taken a lot from me, but I cannot overlook the fact that it has given me some amazing things also, one of which is the miracle of TLM. This magazine has not only provided an avenue through which I can help others, but it has helped me in more ways than I could have ever imagined. It has taught me that making a change is not a far-fetched dream but is in fact, within my grasp and reminds me when I forget, that even in the midst of a disease, constant positive outlook (with a family of warriors behind me) can dramatically change the outcome of my situation.


 Happy Anniversary TLM. This is my tribute to you: TLM - The Lupus Magazine


 Different ages, languages, cultures,
 Different countries… worlds apart.
 Different perspectives, dreams, experiences,
 One disease, one family, one heart. 


We laugh, we talk, we empathize with each other, 
Or just listen while someone vents. 
We sometimes even get angry at each other, 
But understanding is never spent.


 Many people see miracles only in occurrences,
 However, having people who reach out and who share,
 Who open up their hearts and lives to touch another,
 Is nothing less of a miracle, so dear.


 I have learnt that some miracles are to be created, 
They stand waiting at our hearts’ door. 
Through giving myself to others, as I was taught, 
I can be the miracle that someone is waiting for. 


When Lupus put her mark on my cheek,
 In my ear she whispered, “You are destined for the sky” 
You see, I have always had wings, 
But it was TLM that taught me how to fly.


 © Shoyea-Gaye Grant
Jamaica, 
West Indies. 


The Lupus Foundation Jamaica Voice mail: 1876-803-0082 Email: lupus_foundationja@yahoo.com


First Published in The Lupus Magazine

The Lupus Foundation of Jamaica

Though maybe just a little dot on the map of the world, the little island of Jamaica, much like many other great nations of the world, is trying to raise the level of awareness nationally, as it relates to Lupus.

The driver or the lupus awareness vehicle in Jamaica is the Lupus Foundation of Jamaica (LFJ). This foundation has been in existence since 1984 but went dormant for a while. However, since 1995, it has awakened, and has been active up until this present day. The LFJ does not have a definite location as yet. However, this in no way hinders it from accomplishing its objectives or from hosting its monthly meetings which are held at the Girl Guides Association of Jamaica Headquarters at 2 Waterloo Road, Kingston 10.

Meetings are held usually, on the last Thursday of the month and in these meetings, issues that affect Lupus patients are addressed. These meetings are geared towards educating the patients, as well as providing a social setting for them. Along with providing information through presentations, patients are also provided with lupus magazines which they should return after reading so that they can be passed around to all other patients.

Meetings begin with a devotion, after which visitors are welcomed and asked to introduce themselves. This is followed by the presentation of a specific issue. Examples of previous topics are the anti-inflammatory diet, lupus and weight loss and lupus and the heart. After the presentation, there is a question and answer segment which concludes the evenings proceedings. This is usually the beginning of the social bonding where persons get to know and interact with other Lupies and doctors.

The Jamaican Lupies have their very own Martin Luther King Jr., who has been driven, not merely by his profession as a doctor, but by a passion, a deep concern and most of all, a dream for Lupus patients. This person is Dr. Karel De Ceulaer, a Consultant Rheumatologist in the Department of Medicine at the University Hospital of the West Indies. The foundation’s success is credited to him and the hard working board and executive members, as well as the members of the LFJ.

Dr. De Ceulaer is the president of the LFJ, who by birth, is a Belgian and whom I have had the privilege to interview. I went to the University Hospital of the West Indies with my notepad and pen in hand, ready to be all professional. However, when the interview started, it became more of a comfortable conversation. When I asked about the drive behind being the president of the foundation, the response that followed was:

“Lupus is a disease of the whole body and there is much more to Lupus than just taking medication. I’ve recognised that it puts limitations on life so there is a lot of adopting and adjusting for the Lupus patient. The diet, the exercise, the constant fatigue… Also, the medical approach alone does not necessarily cover the educational aspect. I have seen it many times: the patients with Lupus who are knowledgeable and who understand the disease do a lot better than those who don’t."

The interview went on to zero in on the duties of the foundation and its main objectives. The primary objective is to spread lupus awareness and educate patients and this is achieved by providing informed speakers to make a presentation at monthly meetings, on various issues that affect lupus patients. The LFJ also helps to provide employment for lupus patients who have lost their jobs because of lupus. This is done through the help of a social worker. Awareness is brought about also, through the mediums such as schools, radio and television and an annual church service, lupus walk and symposium.

There is no cost attached for attending meetings. However, each member is required to pay a fee of JA$500.00 (the equivalent of US$5.95) for a Lupus card which is valid for one year. This is a small price to pay for the benefits that are derived from having this card. With the card, Lupus patients are able to purchase medications at a discounted cost at thirteen pharmacies locally and to receive a discount at all central medical labs and the Sunshine Dialysis Lab.

The interview ended with Dr. De Ceulaer saying that the foundation is indeed trying its best to reach the patients with lupus and those who it impacts but admits too, that there is much more has to be done, and much more that is being worked on.

© Shoyea-Gaye Grant
Jamaica,
West Indies.

The Lupus Foundation Jamaica
Voice mail: 1876-803-0082
Email: lupus_foundationja@yahoo.com


First published in The Lupus Magazine

One of Those Mornings

This is one of those mornings when I wake up, wrapped within the arms of Lupus. One of the mornings when pain taps me on the shoulder and says, “Wake up Shoy. We are spending the day together.” This is not one of my good days… but getting up is the hardest part.

This is one of those mornings when my mind wants to jump out of bed and start my day but my body refuses to. I lie on my bed and pain sweeps through every fibre of my being, and the only thing I can do is let it. I am alone. In the darkness of my room I cannot even find the tears…or the strength to cry.

With the pain comes a flood of emotions: Anger, hurt, bitterness, frustration. Then there comes the feeling of being cheated. Robbed of the miracle of being healthy, robbed of the way my body felt before Lupus, robbed of the luxury of choosing to eat whatever I want, robbed of the chance to jump out of bed when I want to… at least for the days of my youth!!

I know now that no matter how long I have Lupus and how often I have these days, whether it be every month, every week, every couple of days, this is something I am never going to get used to.

The pain intensifies to the point where I cannot even think. This I count as a blessing in disguise, for what it does is block out the thoughts that would no doubt drive me into depression. It hurts to move, but I have to search for that one little spot where the pain is not so bad. Every turn is agonizing. Then I find it… that beautifully wonderful spot, and I feel like the happiest person on the planet!

After waking up, it is expected to feel rested. However, my body feels like I’ve just completed a marathon. As I begin to slowly doze off, it is Reality who now taps me on the shoulder and whispers, “Hey Shoy, we got a whole day ahead of us.” Sometimes the things that keep us going are the harsh but constant realities of this life. The world will not stop for our pain. Time won’t stand still because it understands that we are left behind. Life keeps moving.

My body is screaming for me to rest but I somehow summon the strength to do something that seems all too natural and easy for others, but has become a great task for me and many others also: I get up out of bed. As my feet fumble for my bed slippers and I stand, nothing and no one on the face of this planet can convince me that there is a flat surface beneath my feet. My eyes have deceived me for it is a FACT that I walk on pins and needles.

I’m positive that I’m not the only one who has mornings like these. While for some it might be worse or not so bad, for others it may be exactly the same. Nonetheless, we all share one thing in common: We all have to get up.

I walk the entire mile from upstairs to downstairs and as a pull the curtains across the window, I realise just how blessed I am to be given the chance to see God’s beautiful creation yet another day. All my senses are intact and I an able to walk. If I can make it downstairs then I can make it through the rest of the day for indeed one step leads to another. I woke up in agony… but I woke up. I open the door to outside and a new day. Despite everything, I cannot stop the smile that lights up my face.

Lupus butterflies are different from all other butterflies. We have the ability to flap our wings against the wind and ascend to great heights even though our wings are often achy or sometimes broken. We have the ability. It is our choice to take advantage of it or not. Ƹ̵̡Ӝ̵̨̄Ʒ...♪♫.¸¸♥Butterfly fly away♥¸¸.♫♪...Ƹ̵Ӝ̵̨̄Ʒ

© Shoyea-Gaye Grant
Jamaica,
West Indies.


First Published in The Lupus Magazine

We are Here!

I lay on my bed and stare at my side of the roof. The side that is purple. Suddenly it hits me like a tonne of bricks! For an instant I’m drawn from present reality with all its noise and activity, and I am pulled in a state of awe.

The year 2010 has come to its end and we welcome the beginning of a new year. Yes, it hits me: I have made it… I AM HERE!

Looking back on the year that has passed, lupus-wise, it might have been a good year for some, while for others, the hardest year since diagnosis. Despite the difficulties we all went through, what we cannot overlook are the blessings that have been with us every step of the way, regardless of how insignificant they may seem.

I know all too well that being optimistic is not a very easy task and it is quite understandable that many Lupies have yet to grasp a positive outlook on life or have lost it. Sometimes we have to put on our diving suits and swim far and deep in the ocean of negativity and the waves of sorrow that threatens to drown us to find what seems like tiny bubbles of goodness and hope.

Language has failed often times, to provide suitable descriptive words for living with lupus. It might get so hard sometimes, it seems unbearable. Many persons see a happy face and a pretty smile but do not have a clue that a war rages inside our bodies. The people closest to us can only imagine.

Another reason why some people lack optimism is they misunderstand what it means to be an optimistic Lupie. It does not mean turning a blind eye to the negatives. The negatives face us every day of our lives; therefore, looking at them is inevitable. We are all humans and this takes its toll on all of us at one point or another but in actuality, what it means is looking past the negatives.

For the times when it becomes agonizing to walk, let us remember when we could not walk, or the many others who cannot. For the times when we become frustrated because of the appetizers and desserts of pills that we have to take once or twice a day, let us be grateful that we have a source of treatment. At times when we get sad an angry that the persons who we expect to understand do not, let us keep it in mind that not everyone has a support system with persons who indeed try.

Sadness, anger and frustration are normal emotions to feel but what is important is that we should not dwell on them to the point that they become all we can see. If we become awfully depressed, we will only make our lives shorter.

For year that lies ahead, my encouragement to all Lupies is to recognize the things that are not only our blessings, but our miracles. While many only look for the revolution of healing, what we all need to recognize are the amazing things that happen on a daily basis. Our ability to persevere and to function through pain is a miracle. The very fact that we live this life, not merely functioning but excelling is a miracle. Every life we touch and every single time that we give someone hope is a miracle. However the most amazing miracle happens every day: We are here.

Our bodies have decided to launch an attack on itself yet we still live. Organ damage or failure, steroids, chemotherapy, surgeries… but we are here. We go to bed in so much pain sometimes we think we may not wake up… but we are here. Another year and WE ARE HERE!

There are many people who did not make it to this time and we keep them alive in our memories and thoughts but we are here. Our missions await accomplishment.

When lupus put her mark across our faces, she gave us wings… No matter what comes our way, let us never forget that we are butterflies. Last year has gone but for this year, let us acknowledge that even though we may seem fragile, we have the ability to ascend to great heights. We are butterflies and there is only one thing necessary for us to fly…the miracle that we are here. ~*Butterfly fly away*~

© Shoyea-Gaye Grant
Jamaica,
West Indies.

Tears of a Butterfly

In my last article, I spoke about the Official Lupie Duty, which is constant Lupus awareness. Lupus awareness not only speaks to going out and giving others information about Lupus. It means sharing our story with the world - our entire story.

It means letting go of selfish pride and opening up. This may be hard and it may be a gradual change but the most important thing to remember is that butterflies can never fly with their wings closed.

As Lupies, we go through some very emotional and personal things that we feel we should keep to ourselves. We often feel that maybe we are alone in these experiences until someone shares these same experiences with us. I realise that this holding it all inside is not what living a purposeful life is about.

I was very private with personal information but someone very important and inspirational, my very own Lupus mom, taught me that sometimes I have to put pride aside in order to help my fellow Lupies. If I can help at least one person, living a life with Lupus has purpose and meaning (Thank you Julia!). The doctors are there to help us the only what they know how. We have to use what we have to help each other: ourselves.

This butterfly has decided to spread her wings…

I cannot speak for other Lupies but my confession is that I run from my tears. I go out of my way to hold those tears within my eyelids. I surround myself with persons who make me laugh, I max out my time so that I always have something to do and no time to reflect, I use art, get lost in a book or my favourite, I transform all the hurt into anger…and hell knows not the fury of a woman with Lupus.

The fear in crying does not arise from the possibility of receiving pity and it is not totally accountable to pride. Its just that sometimes I feel like if that first tear falls, it may open the floodgates and I may not be able to stop crying. Even so, the tears fall anyway, whether in drizzles or thunderstorms.

Sometimes the realities of Lupus ambush me at rather inconvenient times and it gets so overwhelming I cannot stop the tears from trickling down my cheeks. These are the little drizzles and they rarely occur. They happen in the bus or taxi, when I’m walking by myself in a crowd or in the computer lab doing some work. There is no concern for others as everybody is minding his own business and the few who might notice don’t have the guts or care enough to say something. This is to my advantage.

The thunderstorms occur even less than the drizzles. I hold everything inside then something insignificant happens that pushes me over the edge: The pin that burst my balloon filled with water. I go in my room, lock out the world and let it all out. I cry until my pillows are soaked, until my eyes are swollen and my head is pounding… Then I sleep it off so no one will notice in the morning.

So many things are captured in those tears: the loss of a normal life and health, the wish that things were different and easier, the feeling of solitude, confusion, frustration, helplessness. The point is that keeping all of that and much more inside cannot be healthy.

We hear it many times that crying does not symbolise weakness but how many of us actually believe that? I don’t but it is true. To go through Lupus with a positive attitude most times (not all, since we all have our moments), is in itself, the definition of strength.

However, being strong does not mean not being true to our loved ones and ourselves. It does not mean hiding and suppressing the part of us that hurts and aches emotionally.

Tears can be the only way to let out the things we hold inside that cannot be expressed through action or words, the feelings we cannot name or understand. Love does not rely on the perfection. If we hide our tears form the persons that love us, we are robbing them of the opportunity to love us in our entirety: the happy, the sad, the in between. How will we ever know what it feels like for our tears to be wiped be someone if we never allow them to fall?

It is good to be perky and to maintain a positive attitude towards Lupus. However, let us all remember to be true. Whether we cry frequently, once a year, in the open, all alone, let us remember that it is okay to cry because our tears are apart of us, not who we are.

“Perhaps our eyes need to be washed by our tears once in a while, so that we can see life with a clearer view again.”- Alex Tan

© Shoyea-Gaye Grant
Jamaica,
West Indies.


first published in The Lupus Magazine by Dirty Dog Media + Publishing

Standing up for Lupus

“Hey! Anybody ever heard about Lupus?”

That is how I started my address on Lupus awareness at my youth club. This was followed by a few “yeses” but a lot of “huh’s” and “Heard of what?”

Lupus was discovered centuries ago yet so many persons are clueless as to what it is. It is therefore obvious that it is not up to the scientists, the doctors or even the Lupus foundations to promote lupus awareness constantly.

Lupus does not affect people once a year so awareness should not be limited to a month. Constant Lupus awareness is the “Official Lupie Responsibility”. There is nobody more capable or qualified to talk about Lupus than someone who is living with it. Everybody has a role to play. It is the role of the doctors and scientists to discover treatments and if possible, a cure. It is the role of Lupies to spread lupus awareness all the time, whether we work with a foundation or not.

The very nature of Lupus lies in its unpredictability. Lupus affects every person differently, so it is up to the Lupie to let the world know what it is to him/her.

Now, I am not suggesting that we all go out and start preaching about Lupus and pretend we know everything because that is not possible. We should read up on Lupus, study the findings and get an in depth understanding of what is really happening inside our bodies. It is after this that the most important part comes: Sharing our part of the story with the world.

When I discovered I had Lupus, I did not want everybody to know. I did not want to be treated with pity or differently. I wanted to be normal (hilarious, I know!). A war was raging within my body. It was an internal thing, an invisible thing… and I wanted it to stay that way. (That was of course, before I understood that this thing was going to affect every aspect of my life).

Then I realised that was the reason so many persons died from Lupus. As I was at first, too many of us are living selfishly. This is not about “us”.

This is not something we should just keep to ourselves. This is something we should educate people about, for the purpose of saving lives.

We can save the lives of the persons who are misdiagnosed and those who have not yet been diagnosed. We can save the lives of future Lupies. Early diagnosis equals longer life… or a life. We can heal the broken spirits of Lupies who are being treated and persons with other diseases or other situations in their lives. We can remind them that we are all soldiers in this war and we are fighting together.

At my youth club, among the many questions asked was one pertaining to us being susceptible to other diseases because our immune systems have to be suppressed. This gave birth to a discussion about germs. The discussion entailed how easily germs are passed from person to person, how dangerous it can be and how to limit the spreading of germs, being mindful that persons might die from the “little” infections that can result.

After learning about how dangerous germs can be for someone who has Lupus, if one person, decides to cover his / her mouth instead of sneezing or coughing, near or on someone (who might just happen to be someone with have Lupus), just may save a life.

Though some of us are already standing up for Lupus, compared to the size of the Lupus population, we are few in number. We are all the voices of Lupus. Let us speak. Speak for the persons who have died without knowing that they had Lupus and for those who died fighting, knowing that they did.

Let us speak for the misdiagnosed and the ones who have not yet been diagnosed. Most importantly, let us speak for the Lupies who cannot speak. Let us speak for the generation to come.

Knowledge is power. Let is give people the power to fight back…. This is our duty.

Shoyea-Gaye Grant
Jamaica, West indies.

What has Lupus Taught You?

I just came home from school and I have decided to listen to my body that has been screaming out for some rest. As I begin to relax, my subconscious decides to take me away from the present. Before I know it, I’m on my way down Memory Lane. With this Jamaican heat, it’s a good thing that I have on sunscreen!

Strolling and reminiscing, I’ve seen just how much I have grown as an individual. Before me stands all my accomplishments, my smart choices, my not so smart choices, my mistakes; good times, bad times, the in between; disappointment, laughter, surprises… All of which has moulded me to be the person that I have become.

Going further, I make an effort to pass some friends that no longer play an important part in my life. There was Negativity, Self-Pity, Blame, Ignorance By Choice, Anger and Bitterness. I wave them goodbye. I begin to smile when I see my new friends that I have become rather close to since lately. I decided not to just pass them by but take them with me because we all have a far way to go together. My best friend, Optimism, stood by my side the whole way. She’s absolutely amazing! I also enjoy spending time with Humility, Laughter, Wisdom, Inner-Strength and Accepting Change, so I took them along with me.

Feeling a little tired, I decided to rest at the Lupus Bus Stop. With my ex-friends behind me, I realize that my focus is no longer on what I have lost. Rather, my focus now lies in the question “What has Lupus taught me?”

Lupus has taught me the most important thing I’ll ever learn: Who I am and who God is. Maybe it was in all the pain and the nights when I had to go through it alone. Maybe it was in the hospital. Maybe it was when I finally came to the realisation that my entire life had changed. Maybe it was in those times when I felt alone and away from everybody. Maybe it was those nights when I would sleep on a wet pillow… But somewhere in the midst of everything, I found myself and I found God. There were times when, despite the love and support, nobody could help me but God. I had no choice but to turn to Him and that was the beginning of a wonderful relationship with my Creator. I also found the person within. I am now completely sure about who I am because I have spent quality time with myself. I turned me inside out and got to know all my crevices and corners. It was imperative that I did this in order to continue fighting this disease. Lacking the certainty of who I was would get me nowhere. Now that I know myself and God, I live with purpose.

Lupus has taught me what love is. Love is not something we say, feel or fall in. Love is something we do. The people that are there through it all are the people who really love us. The persons we can call in the middle of the night when pain keeps us awake, the ones that put up with our mood swings, the ones that get angry when we do something that makes us sick, the persons that, without even knowing, push us when we cannot seem to sum up the strength to go on. That is love.

Lupus has taught me to fight. Lupus is a battle, everyday we fight. Some people will never fully understand that statement. Sometimes it takes every bit of strength and will power to do the things we once considered normal. For me, it’s a fight to get up out of the bed, for sometimes it seems as if fatigue and pain has tied me to the posts. Walking down a flight of stairs can be agonizing when arthritis holds tightly on my 19 year old legs, making them feel like 90. If I can push my way through all that Lupus throws at me, what else can I not handle? If Lupus is so much and I’m fighting it, defeat has become history.

Lupus has taught me that life is short. It matters not what age, creed, religion or race one is, time waits on no man. I moved from being a perfectly healthy teenager to fighting for my next breath. I do make long term plans but I live for today because lupus has shown me that the only guarantee I have is NOW.

I’ve decided to leave this Lupus Bus Stop because it’s just what it says it is: A bus stop. Somewhere to pause, not dwell. It is not about loving Lupus and being glad I got it. Its about milking good out of all the bad that surrounds us. As I head back to the present, I know deep in my heart that I’ll take all the lessons I learnt from Memory Lane with me.

What has Lupus taught you?
By Shoyea-Gaye Grant ©

First Published in The Lupus Magazine

Jamaica, West Indies