Whispers: Chapter 5
I
stared at the pages in my hands froze for a moment and then turned and ran to my room holding tight to that precious bundle. It was a day like any other but in that one innocent moment everything changed.
“Shira come here.” I’d followed my mother’s voice to the study where she stood holding a yellow folder. “Here read these. I’ve been reading them for you these past few years.” I’d peeked inside and then made a beeline for my bedroom locking the door behind me.
I took out the first magazine. What was this exactly? I was confused as I looked at the front cover with a cute picture of a giraffe and the name: Marfan Magazine. I opened it.
Page one. Staring up at me were pictures of people who looked disturbingly similar to me.
Page two. Marfan syndrome is a genetic disorder that affects one in five thousand people and causes symptoms that include scoliosis eye issues heart defects…
Wait. Wait.
It was describing me. It talked about My experiences about all the parts of My body that the doctors had poked. It was All About Me. And I wasn’t alone. I was confused then relieved and finally angry. Why had I lived for so long in fear of the unknown? And why did I have to feel so alone when there were others out there just like me?
Page three. A picture of a heart. The aorta is the pipe that carries blood from the heart to the rest of the body. Every heartbeat puts huge pressure on this pipe which is usually very strong. In people with the Marfan’s gene the weakened connective tissue leads to a weaker pipe which is then in danger of tearing open.
So this was why they were so concerned about my heart; this was why the doctors warned that I could die.
Page four. In memory. A list of people who had died of an aortic dissection that year. Goodbye illogical fear of dying hello fear of my heart exploding.
Page five. Oh this was why I was continuously bumping into things. The internal lens in the eye is held in place by two delicate threads which adjust the lens for near and far vision.
Again that connective tissue thing came up again again the things that were supposed to be strong were weak this time leading to a lens that slowly slipped further and further out of place. I was blanketed in sadness. Did this mean I would eventually go blind?
No! I needed to see the world. NO! Why was there no hope in these unrelenting pages?
Page six. Research — hope for the future. A detailed explanation of a new drug trial. Beta blockers, the usual medication given to people with Marfan’s to ease the pressure in the aorta before it gets too stretched, other medications that weren’t entirely effective and had side effects.
I remember suddenly the tiny pills I’d been given when I was ten, remember clearly the chest pain, insane nightmares, and overall sickness that followed. There were hushed conversations about “quality of life” and then the pills stopped coming and I felt much better. So that was what that was all about.
Next, it described the new, miracle new drug, Losartan, effective at keeping the aorta at a normal width. As a delightful side effect, many of the trial subjects gained increased muscle strength.
I wanted to try Losartan, but couldn’t figure out how to bring it up with parents who sent magazines to replace themselves. For years, they’d hidden everything from me, and suddenly they gave me these magazines. I felt relief tinged with a new fear: I finally knew the beginning of my own story — but the future was still an unknown.
I looked up at my locked bedroom door. I knew I’d have to go out and face the world again, with all this new information racing round my head. But for now, I turned to the wall and buried myself under my blankets. A new chapter in my life was beginning, but for a few minutes at least, I could postpone facing it.
To be continued…
(Originally featured in Family First, Issue 505)
Oops! We could not locate your form.
RECOMMENDED
RELATED CONTENT
Instead, I was consumed by fear of the unknown. I received no explanation for the many doctors’ visits, nothing to combat my wild imagination that created stories each night to prevent me falling asleep
I grabbed the folder and handed it to Rachel. “I’ve been doing some writing. Here’s some of my...
“You sound like you’ve had an interesting life,” the instructor said, giving me a look that was a...
Only time would tell if I was crazy or a genius for choosing to do this surgery,
My rods were shaped one way and the airplane seat another, we just didn’t click… I shifted, moaned,...
I was gently and not so gently woken and reminded that if I wanted to continue living, I...
