“You practicing to become a ballerina?” my mom asks me as she lathers up soap on a sponge to wash my back. I’ve gotten pretty good at showering with one foot sticking out, as a result of an open ulcer on my heel that has to stay dry. I have a few serious ulcers that are currently being cared for by a wound care nurse, twice a week. I gaze down longingly at my right foot, which is perfectly intact, and wish the left would hurry up and heal. There is a certain luxury of freedom that we all possess in our daily lives, and it isn’t noticed until it becomes compromised.
Ulcers are by far the most annoying and painful symptoms of scleroderma. When I have too many active ulcers at once, I need help showering because they cannot get wet. So, I end up showering awkwardly, trying to keep random body parts dry while managing to get as clean as possible. In these moments, I long to be completely submerged under my shower head, water flowing freely, pooling at my feet. Instead, I’m strategically prepping my foot, wrapping it up in a plastic bag lined with paper towels. I’ve had to do this for two months now. This takes a portion of my freedom along with it and I’m handcuffed to a symptom of my disease.
The luxuries seem to diminish, little by little, as scleroderma progresses. I don’t have the luxury of comparing older pictures to recent ones and admiring how much I haven’t changed. I used to see old pictures of my healthy self and try to remember what it was like to be independently free. But now I look longingly at pictures from just a few years ago and wish I could trade places with myself in earlier stages of the disease.
There’s a common life analogy that states that we take so many things for granted, and I didn’t realize that this can still apply to me as a disabled person. Did I take showering while standing on both feet for granted? It sounds strange but I feel like I did. The problem is that we don’t know what we’re taking for granted until it’s gone. This is one of the great stigmas of life, and scleroderma teaches us this lesson faster.
I don’t have the luxury of holding a grudge against someone for long periods of time. I don’t have the luxury of wasting my time. Period. My disease has taught me how short life really is, and sometimes I feel like learning this lesson at 30 is a blessing and a curse. Most people my age don’t think this way because they feel as though they have their whole lives ahead of them. I overhear their plans for retirement, while I wonder if I’ll be blessed to see my 40th birthday.
It is true that everyone is dying, and each day that passes, we are one day closer. But a perspective on life is significantly changed when you have an idea of how you may die. It’s like you had blinders of oblivion on your entire life and a disease comes along and makes everything crystal clear. We live on borrowed time, and it’s easy to get distracted from that fact.
Life is the last thing we should take for granted. It is a luxury given to us wrapped in a beautiful box filled with memories and emotions. It’s our job as human beings to evolve and grow from our experiences, while being grateful for every minute on earth, despite our circumstances. Tell your loved ones you love them. Say your apologies when you’re wrong. Catch a raindrop on your tongue. Do what makes you feel free and live.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.