I have three sisters. Teresa is the oldest (43), then there’s me (41), Nadia is number three (39), and Silvia is the baby (33).
In this picture, we happen to be in order from oldest to youngest (left to right).
About ten years ago Silvia was diagnosed with an autoimmune disease called Scleroderma. None of us had ever heard of the disease, and we were not alone. In fact, even all these years later, most people still have no idea about this terrible disease.
What is Scleroderma?
According to the Scleroderma Foundation: The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. The disease varies from patient-to-patient. Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases.
Silvia’s disease is systemic, which means it affects more than just her skin. Since her diagnosis her symptoms have become increasingly worse. She requires a slew of medications to manage pain and she goes through various treatments to manage symptoms that sometimes require lengthy hospital stays.
This is her just a few days ago at Toronto Western Hospital where she was getting a Prostaglandin infusion to treat Raynauds.
What is Raynaud’s?
Raynaud’s phenomenon is a disorder that affects blood vessels, mostly in the fingers and toes. The constriction of blood vessels causes fingers and toes to turn blue. In Silvia’s case, it’s so severe that ulcers form at the tip of her fingers from lack of circulation. She experiences tremendous pain because nerve endings become exposed, making simple tasks impossible to tackle.
VIEWER DISCRETION ADVISED!! This next picture is what her pinkie finger looks like right now.
Another treatment she requires is Hyperbaric Oxygen therapy. It’s a medical treatment where atmospheric pressure is increased and controlled to enhance the body’s natural healing process.
Since her diagnosis, we have rallied together to support our sister (daughter, wife, mother). We participate in raising awareness through organizations such as the Scleroderma Society of Ontario.
Last month, we attended an unforgettable event to raise Scleroderma awareness.
But, in spite of our efforts to keep spirits up and awareness high, the lows are an inevitable part of this journey. Silvia’s three young children must deal with being away from their mother for days, sometimes weeks at a time. They watch their mother endure unimaginable pain.
Recently, Silvia created this video to try to understand her own illness through her children’s eyes.
I know that my blog is about poetry, and it seems like I’ve gone off topic. My sister’s disease has affected the entire family, me included. I have been her medical ambassador, her ass-kicker and her babysitter, but I still feel helpless. What do you do when you want to take their pain away? Well, I write. I write to make myself feel better, and sometimes, when I strike the right chord, my writing makes her feel better, even if just for a moment.
Background info on the acrostic poem I wrote:
- The Alchemist by Paulo Coelho is our favourite book, which is why it’s referenced in the last line of my poem.
- The Scleroderma Society of Canada runs a campaign with the tagline “Hard word, Harder disease,” and I say, “Let it not harden your soul.”
- The “open wounds” in the poem refer to her finger ulcers.