...And this is where this post gets extremely tricky. I don't want to come across as selfish, self-pitying or bitter - I'm not - but there's something I want to say that might be challenging.
Life is fragile and this is something I'm confronted with everytime I have a bad asthma attack. I am almost always faced with the very real possibility of my death, and however many times this happens I never get used to it. It's been previously said to me by friends that I've got through the attacks before so I'll get through again, but this isn't necessarily the case and it actually makes me feel pretty isolated, because it's a denial of the reality of the situation. It denies my experience. It denies the truth. It negates my fears. I know it's a defence mechanism for them so that they don't have to think about mortality - mine or their own - but it's unhelpful. The fact is that each time I go into crisis I am fighting for my life, and the fact is that I've already out-lived my life expectancy.
Asthma attacks are not only frightening, but also extremely lonely experiences. When I'm in the midst of a crisis I can't breathe enough to speak. I can't tell anyone how scared I am. I can't ask for anything I might want. There may be plenty of physical contact but it's from professional carers and almost exclusively involves the touch of a stethoscope, the prod of a finger, the jab of a needle, invasive and painful blood tests. Of course I appreciate that this is all absolutely necessary in the attempt to keep me alive, but it's all so impersonal and clinical ... and lonely. What I crave for at these times is not only for my life to be saved, but also the gentle touch of a friend; the company of somebody who cares about me for me; someone to hold my hand; or just have someone be with me, sit with me, help me through by being there with me. I truly appreciate how difficult it must be to watch someone you care about go through the experience of a severe asthma attack, but I don't believe it's actually as difficult as going through it. I also appreciate how difficult it is to be made to confront the reality of death and to consider your own mortality, but again, I don't believe that's as difficult as having a head-to-head with death. Now I'm not saying that I want crowds of people or a bedside vigil when I'm in crisis, but the company of a friend and that possibility of caring, non-clinical touch would sometimes be so very much apreciated. Yes, this has happened sometimes, and W in particular has been amazingly wonderful in this and many, many other respects, but usually people stay away until I'm well on the mend ... perhaps easier to face ... guaranteed to stay alive in the immediate moment. Of course these visits are extremely welcome and very important to me as well, but in a different way.
I entirely understand that people have busy lives and that they need to get on with them. I don't want to be the centre of attention. I don't want to appear to be ungrateful for all that my friends do for me and the time they give me when they do visit ... it's just ... Well, I need people when I'm desperately ill, when I'm scared, when I'm trapped in the isolation of my head because I can't tell anyone my fears or my needs because I don't have the breath. I need people to sit with me and just hold my hand when I'm in that post-attack big sleep. I may only be intermittently aware of their presence, but the fact that someone cares about me and is prepared to sit and be with me during those times fills me with hope, appreciation, love, and thanks. I know that it's boring sitting with someone who's asleep. I know that it's still difficult witnessing the aftermath of the struggle for survival, but it's through that struggle and in the aftermath of it that I most need love and support...
... I don't want to die alone or lonely. Would you?
This has been very difficult to write and I've been very unsure about posting it. I don't want my friends to feel unappreciated or got at. I just want to be honest, tell it how it is and maybe make all of my readers consider what they can do to help someone in the moments of life and death. Even if you feel that what you are doing is nothing, or that there is nothing that you can do, the fact of being there can be the most valuable thing you can do or give.