I love having my friends over—until I don't. It's not about them, really. They're great, and I enjoy their company. But there's one unspoken rule that I fiercely protect: no one goes into my room. It's not because it's messy or embarrassing. In fact, it's quite the opposite. There's nothing to hide in terms of clutter or shame. Well, nothing except the white shelf on wheels.
The white shelf on wheels is my secret keeper, a silent witness to the part of my life I don't share. It holds the things I'd rather the world not see—the high-frequency chest wall oscillation vest, my G-tube supplies, the nebulizer, and the 16 medications I take daily. Then there are the inhalers: Salbutamol, Terbutaline Sulfate, and ipatropium bromide. Tucked in the corner, ever-present but rarely used, is the oxygen tank, waiting for the inevitable days when breathing becomes more of a battle than usual.
It's not that I'm ashamed of these things or of my cystic fibrosis. It's more complicated than that. I just don't want them to know. I don't want my friends to see the hospital stays that these supplies represent, the endless hours spent tethered to machines and routines. I don't want them to understand that I'm on the lung transplant waitlist or to see the shadow that CF casts over every plan I make, every breath I take.
Most of all, I don't want them to think about the fact that cystic fibrosis is terminal.
I want my friends to see me. Not my CF, not my medical chart, and definitely not the things this disease has stolen from me. It's already taken so much—why should it take their perception of me too? In this small way, by keeping my room and my white shelf off-limits, I get to keep one thing that's truly mine: the version of myself that isn't defined by my illness.
