“You need to write about this, to acknowledge and express those feelings you’ve been bottling up”
Cristina assured me while looking straight at my face, even over a video call it was hard to look right at her eyes. My gaze shifted to my saddened, tired, and steroid damaged face which previewed in the corner of the screen. How does that person, looking into their own soul, want to express and feel at a time like this. It was hard to believe that the face I saw looking back at me was mine, it had become so unrecognizable covered with scabs, patches of dry flaky skin, and the skin so raw it appeared to be a result of a burn.
The thoughts and feelings behind the face had become foreign as well, like a new stranger entering my head-space. Although I had always struggled with things like self-esteem, self-image, and even things like depression, topical steroid withdrawal has kicked all those doubts and fears into overdrive. Simple tasks like looking into the mirror, going outside to do anything, or even take care of myself have become things that require monumental willpower and effort. I’m not sure if the lack of energy is because of the condition itself, or because of the giant mental cloud looming over what remains of my life.
Simple tasks have become impossible and simple pleasures I used to enjoy have been stripped away, maybe things are more complex than I had imagined. Taking long warm relaxing baths, exercising without the salt from my own sweat stinging my wounds, or enjoying the soft breeze without the feeling of searing pain with the moving air are just some of the many things that are distant memories now. Even hobbies I enjoy such as basketball, gaming, drawing, music producing, or bingeing anime have become tasks tainted with the pain of steroid withdrawal.
While it feels like my life has stopped, the world is an uncaring mistress, time equally inconsiderate continues to tick away. While my young peers, artists, and fellow musicians act to improve their crafts and make their dreams into reality, at this young age my only concern is trying to nurse my health. Anger, frustration, depression, self-pity, and the thought of taking my own life swim in my mind and mix around. Negative emotions don’t come in shots, more like a potent mixed drink life the bartender serving me a cocktail of shit, while the customer next to me getting the top shelf. And I look at the successful, the healthy, the wealthy and I wonder. What’s different between me and them. . .Why did I get slapped with the failing body? The grass is always greener. . . but it seemed like my grass was dead and rotting.
A part of me was afraid to admit there was anything wrong with me. . . I took a day of work. The day turned into a week, not seeing any improvement I called my mom, I had a breakdown. Crying as I told her that it felt like life was leaving me behind and that it wasn’t fair that I had to deal with this illness. She did what any good mother did and comforted me the best she could over the phone, my whole family was on a video call encouraging me to take time off work to seek treatment. The part of me who always wanted to be productive and striving for my dream had to surrender this time.
If it weren’t for TSW, other parts of my life weren’t going as well as I wanted, but things were good. I had a job I enjoyed, friends both off and online, a loving girlfriend, and I had just purchased one of my dream cars. But isn’t that the case with most people who have to face this horrible condition? It gave me a new appreciation for all the things I’d lost, a new love of little things. Looking back, the seemingly normal, average, and uninteresting life I lead was better than I knew it to be, but I had wished upon the monkey’s paw of topical steroids to give me that life and now I was paying for it.
While those close to me supported me on one side, bearing the other half of my weight are the TSW warriors who have lead the way. Because Brianna Banos was brave enough to share her story and document her recovery I was able to realize what had been causing my skin problems. When I saw that Brianna and other people like Jonathan Rowe were brave enough to say no to steroids, it encouraged me to do the same. Every time I hit a spot in this journey when it seems impossible to continue I’m reminded that there is hope on the other side of the journey.
The other words from my sister swam around in my mind as I started writing.
“You should write this not only for yourself but for other people who are struggling or might be in the same place as you are in the future”
And so more than thirteen months after stopping steroids I’ve started to document the process. Starting from this difficult time, I figure if I can share my story and my face now, it will only get easier.
Dreaming of better times,
LaidbackMarco
