I didn’t think I’d be writing this now. I don’t mean at 6.17pm on 13 08 17. I mean I didn’t think I’d be well enough or even still alive.
That said, I often feel half dead as I gasp for air, wondering if this is what a fish feels like when it’s lying on the deck of a boat, waiting to be killed and cleaned. The sensation I get in my chest is like an emptiness where there should be something. Not a solid thing, but air, something that will come out through my nose or mouth. Or will fill my chest by coming in through my nose or mouth. Instead it’s as if my lungs touch my chest walls, rather than moving in rhythm in air, a compound containing oxygen.
My body’s first response is fear. Aren’t we supposed to breathe and supply our bodies with the oxygen it needs involuntarily? Like riding a bike, only much, much more easy than riding a bike? Isn’t it the first thing our body starts to do after we’re born? We breathe. We keep breathing, with only tiny intervals like when we have labour pains and we gasp with the agony, or we dive into a pool. Those sort of gaps seem fairly normal. But to walk a few yards, or turn over in bed too quickly, and feel nothing in my lungs? Fear. The fear of death. Of not being able to explain.
I have no fear of death itself. The fear that comes to me is from the flight or fight response, except that I can do neither. A little bit of fight, that gets me some air inside by altering my position, and no sympathy because my struggle is misunderstood for ‘anger’ and I criticised and judged. Or that is how I feel I am treated.
There is nothing elegant or ‘feminine’ about gasping for air. Quite the opposite. Trying to get air into my lungs makes me feel clumsy, jerky, spasmodic. Trying to cough my throat clear has the same effect. It’s a no win, no win situation. Even my loving, protective dog runs out of the room when I need him to love me.
I am grateful for my bed, which has just the right firmness/softness balance for me, and lets me lie in the ways that are conducive to breathing. I am grateful for the swing seat in the garden, on which I can lie on my side in sunshine, taking in air. I am grateful for my ceiling fan in my bedroom, which moves air around on hot airless days, and cools my skin when the struggle to breathe makes me unbearably hot inside my body.
I am grateful to those who prepare my meals, bring me drinks and the other things I need to survive. It’s wonderful that I live in such a wonderful place, and that I can see some of it from my window.
And to those few friends who have stuck with me, I thank you.
Writer and psychologist. My health, a journey with two life shortening diseases 