Please allow me some space to share some of my thoughts and feelings and “heal” in a way that has helped me over the years in overcoming overwhelming emotions that as human beings we tend to hide by keeping to ourselves. You see, writing for me has always been an escape and a therapeutic measure that even though at times takes on a “dark” undertone, has always helped me greatly.
Today, I want to write a little about Lupus and how this sinister disease has crept into our lives and taken one of our very own. This word Lupus was something that had never entered my vocabulary until about three years ago when my sister Shante Lewis, who was residing in the U.S.A., called me and my mother and told us she had been diagnosed with the disease.
Still, I didn’t know what that meant and as she explained what her doctor had said about her about “staying out of the sunlight and how Lupus was a disease that broke down your immune system…” we didn’t fully grasp the full reality of what we faced.
Over the next two years, she got progressively worse, constantly gaining and losing weight because of the medications and being in and out of the hospital. All I could do was pray and over the phone give her words of encouragement and hope that the disease would go into remission.
Sometime in September 2012, she decided to come back home to Belize, which was something my family had been begging her to do because almost all her entire family lived here and she did not have that family support where she was. It was with great joy that I met her at the airport that day, but I was teary-eyed to see that my once vibrant sister was now so frail and fragile.
Still, I was happy that she was here and committed myself to do all that I could to make her life much easier. None was more happier than my mom, who rolled out the “red carpet” and did everything to make sure that she was comfortable and well taken care of.
Adjusting back to life in Belize was quick for her and once she even commented on how she had forgotten how easy we had it in this country. We were fully aware that Belize does not have adequate medical services available for this disease, and the constant nagging pain she faced everyday day in and day out was always a worry for us.
She had brought some of her medications and as they slowly became exhausted, we had to purchase the generic brands which we were told worked just as well. Some of the medications were not available anywhere in the country.
In March of 2013 she went back to New York, where she spent one month in the hospital over there and came back to Belize the following month. Her condition was slowly deteriorating to the point where she could no longer walk or fend for herself, and so my mom took on the responsibility to take care of her on a full-time basis, as any good parent would do.
Within my small circle of friends and associates, I came to learn that they knew persons who had also had the disease and had already “passed away,” and I also found out about a Lupus Association that was supposed to have been formed to assist persons here in Belize with the disease. I called the number I was given, only to learn that the concept was in the planning phase and was in need of funding.
It’s interesting that since then I have not heard any new information from them and I believe this would be a good venture, because this disease is planting itself firmly into the Belizean society.
I knew this disease was terminal, with no cure and no real source of origin, although some doctors believe it is caused by some environmental stimulus or is hereditary. However, no one in our entire family has ever been afflicted with this disease, so it is one that has left me puzzled.
During the remainder of last year we’ve been in and out of the hospitals, also trying everything from herbs, healthy foods and different doctors. We all knew there was no cure and from the beginning had put everything into God’s hands, but also trying to do the little we could.
Although she could no longer do the things that she wanted to so badly and even though the simplest tasks were a trial on their own, my sister remained mentally strong, even though her body was not.
Her strength was an inspiration to me and my family and even though in the end God had his own plan for her, we are grateful for the life she led and that she came into our lives and touched us so deeply.
She would talk so much to me about this Lupus Center and how it could help so many people here in Belize, and though it did not materialize during her lifetime, I am hoping that whoever was spearheading that mission has not given up, because we all know that it takes a lot of financial resources for something like this… And in the end if we can touch one person’s life positively who is suffering from some type of disease, we help to make that person’s life better even if just for one more beautiful day!
(Signed) Decoy Flores