Flirting with Life and Death

Life is an enigma; a beautifully twisted maze that evolves daily around us. Some individuals have a pretty good idea of how to find their way through, while others are lost and wandering, hitting dead ends. When living with a debilitating chronic illness, it’s easy to feel lost in the maze. Every day introduces obstacles to overcome. These obstacles bear down like a catastrophic hurricane onto the shores of the mind, body, and soul. Just when you think the seas are calm, a new wave of symptoms or side effects arises, eroding away at one’s will to fight. Once an individual’s will becomes weakened, they’re flirting with the lines of death.

Scleroderma rarely shows mercy. The deterioration seems to happen slowly in the beginning, but gradually builds up to test the limit of one’s patience and understanding. You kiss the things you once loved goodbye, and grudgingly adapt to your new normal.

If a person is severely affected with skin complications, they give up a good portion of their independence. As I sit here in my room and type this column, I think about my former healthy, straight, flexible fingers that could glide over the keyboard quickly, effortlessly. Now my movements are slow and jagged, as they are for the rest of the small tasks I perform. I feel normal inside my head, because I am; although my new normal is different. On the other hand, when I watch a video of myself, I feel a flutter of sadness rise to the base of my throat. What happened to the woman I used to be? How did such a disease find me and plague my life as I was just starting to navigate this maze?

Depression is a common heavyweight among many people with scleroderma. Dealing with the constant pain alone can be enough to keep someone in bed for days on end. The endless prescriptions are a nuisance. What’s the point if we still feel like crap when we’re taking them? The last doctor’s appointment might not have gone so well, and new complications are emerging. A repetitive sentence ticks through the mind over and over: “How much longer can I do this?” This is where the real dangers begin.

Our stiffening bodies must be kept in motion. When depression settles in, it becomes tough to find any reasons to keep going. I’ve made the big mistake of stopping my medications. The pills control my life, and I wanted some of that control back. I wanted to ignore the fact that there are new things wrong with me. I bask in my pure ignorant bliss, pretending I’m not a sick person. The medicine can sometimes make me feel like a prisoner to its schedule, routine, and side effects. I’ve even watched new complications arise knowing exactly why. But the fight gets too heavy sometimes, and the weight of chronic illness seems too heavy to bear.

Stopping any medication or going against a doctor’s advice is dangerous behavior that can have one knocking on death’s door. Our bodies are used to the pills, and it’s how we lengthen our time here on earth. Autoimmune diseases are in constant attack mode. We must be grateful that the doctors have a regimen of treatments that can work for us. There’s no straight shot to a cure, but new clinical trials have shown a host of different medications can slow down the progression of this disease.

Although sometimes it feels good to ignore the obvious, life has much more to offer if you simply look. We are the creators and masters of our happiness, and giving up is never a choice. Fight that depression with antidepressants, yoga, or exercise. If scleroderma seems to be progressing, do something about it! There are options. Don’t succumb to the negative voice in your head — you are worthy of this magnificent life.

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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.