I don’t know if I’ll have the strength to get out of bed this morning. I don’t feel like calling in sick to work. Barely out from under my sheets, I prick my disfigured fingertips again.
I don’t want to text my poor blood sugar reading to Mom; I don’t want her to worry. I swallow my last dose of antibiotics and stifle my desire to join all those students reluctantly making their way to CEGEP.
I scrutinize the nutrition label on my sugar-free cereal box with as much concentration as if I were sitting in my calculus class. I hold my small arm in my icy hands and contort myself into a yoga pose to prick my finger in a spot that has no bruises.
I go back to bed, and my cat joins me as though he understands that I’m in need of comfort. Between three calls from my nurse, I write these few lines that have been knocking around my head for too long.
At 18, it’s not having PICC lines inserted into my veins that bothers me, it’s not being able to take part in holiday celebrations because I know how my body will feel the next morning. It’s the plans I have to cancel because I don’t have the energy, the evenings spent in the emergency room that cause Mom so much worry, my impossible dreams (visiting India), having to come to terms with the fact that I will never have a normal school career, but, especially, having to deal with questions that someone my age shouldn’t have to.
Since last year, I’ve felt that my body has been battling a storm at sea and I’m starting to find it hard to steer my ship. I don’t know what island I’m heading to, but I’m keeping the faith.
I alternate between lying in bed at home or at Sainte-Justine. But when I close my eyes, I imagine I am somewhere far away. I block out the painful images in my mind and replace them with visions of projects I will one day have the chance to accomplish.
When I’m in the hospital, and the evenings or nights are too long, I hang out with Stéphane, my favourite orderly. His stories of holidays by the river almost make me forget that I’ve been pacing the same hallways for an hour. Between doses of intravenous antibiotics, I’m allowed to leave my room, but only if I wear a blue mask. It’s a less-than-fashionable accessory, but it never keeps me from going down to play the old, out-of-tune piano in the basement.
During every medical procedure, I have to close my eyes and take a deep breath. And each time the big white light burns my irises, I concentrate hard on imagining I’m somewhere else. But that doesn’t prevent me from thinking about all the times I’ve had to justify my condition. All the times I’ve had to deal with being judged, following rules, and overcoming my desire to feel “normal.” It’s hard to accept that “different” is part of who I am.
But in spite of the small and big dramas that accompany this disease, I want to thank the people around me, because without them, I wouldn’t have come this far.
Mom, because your hand is my only source of comfort when I’m suffocating with pain. You are my pillar of strength. Despite the exhaustion of motherhood, you find the energy to brave the cold to get me a meal that will make me happy. You make all the difference. When you help me get back on track and urge me to take even more care of myself, you give me strength.
My friends, my real friends, because they understand and encourage me, regardless of how many times they visit me in hospital. Because they make the trip no matter what, to come and play piano with me and to engage me in big and little conversations in the hallways of Sainte-Justine.
That person who kisses my scars, who makes me feel loved for who I am. Who finds me beautiful and is undeterred by all that is different about me, and who sticks by me despite this miserable life I lead.
That special volunteer, whose stories transported me back home for Christmas and who unstintingly gave her time and love to make me feel at home.
The staff member who found me plunking the keys of the old piano on the evening of December 24 and who sat with me to show me some songs. I didn’t get your name or your job title, but your generosity that night will stay with me forever. Thank you.
The people with big hearts who write to me, call me and show me support. You are indispensable in both the sufferings and the successes of this battle.
When I was six, I said to my mother, “I have two Ls in my name; they’re like wings!” An innocent quip from the mini version of myself. But even today, I believe that each challenge gives me wings to fly ever higher, to look forward to beautiful moments in my future.
*The remarks expressed in this article reflect the opinion solely of the author and should not be considered as representative of the CHU Sainte-Justine Foundation.