I’m currently lying in my bed, energy levels low. Fading in and out of sleep, in a dream-like state. This feeling is oddly peaceful, but sparks of anxiety and anger flash occasionally. It’s a bit like a storm cloud rolling in. This might make this post a bit incoherent, so I’d ask for some consideration when reading this, as it might take a few sharp turns.
For those who are squeamish when it comes to blood, maybe skip past this one, as I’ll be talking about some graphic scenes and including old photos from the archive where I’ve captured some of my experiences living with Von Willebrand’s Disease.
With Von Willebrand’s Disease, I’m prone to spontaneous bleeding, ranging from small gushes to something you’d see in horror movies. Unfortunately for me, it’s closer to horror movies.
I wake up covered in my own blood, my body shaking due to a fight-or-flight response that was triggered before I’m even conscious. I gasp for air, cough up more blood, and sit in the dark, listening to my body. It’s my nose, right nostril, not just dripping but running with blood like a running tap. “Apply pressure and calm down,” is what plays through my mind. Six hours later, I’ve slowed it to a drip, but I’ve lost a lot of blood. Being a larger one, this wipes my energy levels completely and brings my mental health to its absolute knees.
With the exhaustion that comes from substantial blood loss, my mind floods with prior trauma. All of it surfaces when I’m vulnerable. It becomes a complex feeling of deep depression, anxiety, anger, and frustration. Over the past decade, I’ve also developed new feelings that have started to creep in: shame, insecurity, and embarrassment. These new feelings are tied to the fact that I have people who depend on me, because when I’m like this, I can’t be the usual person they need me to be.
This is not to say that they make me feel this way; it’s actually the opposite. I think when you love someone so much, you just want to be the best you can for them. So when I’m not my usual self and become emotionally radioactive, that’s where this feeling of shame and embarrassment creeps in.
My wife has observed this cycle, which I’ve described in the past as an emotional car crash, for over 16 years now. She consistently reminds me to be kinder to myself. Through her persistence and love, I’m starting to understand what she means. Historically, I’d push myself, but I’ve realized now that it just prolongs the healing. I’m just not well during that whole period, and as a result, I suffer, and so do the people around me. I don’t want that.
What I’m learning is that being kind to myself isn’t just doing nothing, but it’s taking ownership of when I’m not okay and investing my time into being better. That’s what I want instead.
Cody Spencer Photography 