This is so hard. I don’t know what else to say right now, I have no energy to formulate anything more coherent, this is just hard. Every day, every minute feels like it’s taken up with just existing. Existing alone is taking all that I’ve got and this is so hard.

It’s a strange dream-like state where time and life seem to slip by silently and just out of reach. A bit like being underwater. You know the world is up there, out there, but it’s just shapes and murmurs from where you are, always out of reach. It’s dark and lonely and frightening, helplessness and nothingness envelop you. It’s a strange and surreal nightmare, the lack of any energy means there’s a disturbing kind of calm. A calmness of inertia, not of peace.

Sometimes I break the surface. I know that it’s a gift that I can, many others can’t, but it’s so painful too. Every venture into the real world hurts like being submerged in a lake of fire, every sensation like an assault on my senses and already fragile body, my mind struggling to hold on to what I need to do to complete the task at hand.

There is a moment of exhilaration as I feel breath filling my lungs, in and out, as I feel the sun on skin, the wind in my hair, the fresh air of human connection, of the world containing something outside of the illness that is consuming me.

But then comes the crash; the panic as my face falls beneath the surface of the water again, and the sadness and hopelessness as I feel myself sinking deeper and deeper still, the effort of my excursion plunging me down even further than before.

I spend so much time alone. We call it my medicine. My children hate me being away from them, they miss me and feel rejected every time I have to shut them out. I try and explain, to help them understand that I don’t want to be away from them but that I have to. It’s hard on us all. And nothing can make it okay. Nothing can fill the void we leave in each others lives and nothing can make the pain of sickness and separation hurt less. I try and be brave but bravery doesn’t make the unbearable any more bearable. How do I help my little ones take heart when mine is fading away.

I am anxious. My children are having nightmares. My husband is mostly silent.

This is so hard.


When hope is lost, I’ll call you Saviour

When pain surrounds, I’ll call you Healer


I don’t know how to do that just now. I haven’t been calling you anything, I’ve been catatonic again. So this is me calling you Saviour, calling you Healer, not knowing really what it means for you to be all of that in the midst of all of this. I cannot wrap my failing mind around it, I haven’t the heart to fight for it, nor the energy to even articulate my questions or petitions. My eyes and my heart fail me, but faith will call you Saviour, and Healer, and I’ll close my eyes and dream of heaven.


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