In a sequel to my very first blog, An Embarrassing Secret, I have another disclosure to make. Just as my initial embarrassing secret was a ‘coming out’ of sorts, expressing what I found unutterable; so again my written words are a deliberate first step towards conquering new ground. The fact that I find it easier to tell the whole world than to tell those close to me is surely a commentary on some peculiar flaw in my character; but there it is. The closer you stand to me in the intimate circle of family and friends, the more terrified I am of revealing myself.
With this in mind I have begun with Bertha. ‘Bertha’, as you might recall, is the helpfully disarming pseudonym we give to the bevy of nursing staff who frequent Paradise to assist me with washing and dressing. (The collective noun for Berthas could only be bevy, wouldn’t you say?) So most mornings I am deliberately slow to divest myself of my new embarrassing secret. I leave it on until the last moment, so that I’m just powering down and shrugging of the tentacle straps as Bertha enters the door. It’s just a glimpse I offer, but it is public. It’s systematic desensitisation; but in place of the arachnophobiac’s bugs and spiders I’m using selective exhibitionism to overcome my mortification. I am hoping to progress from Bertha to a friend or two. In time. All in good time.
This is how I wish to look:
This is how I actually look:
For just on two years I have relied on a Bi-level breathing machine to sleep; and a fine job it does too! Once I moved past the initial shock of artificial aeration (A Beautiful Addition to your Lifestyle), it gradually became a delicious, welcome feeling to sleep with lungs full of air. Around the start of this year I found that a half hour or so with the Velcro Octopus was valuable of an afternoon; and the respiratory specialist said, “Fine, for a while.” In recent weeks, twelve recent weeks, this has mushroomed from one to two, then three and sometimes four additional daytime hours; and in daylight SOMEONE MIGHT SEE! So afraid have I been of discovery thus adorned, that I have slept under our doona – right under – for most of two years. Recently I changed the privacy lock on the door to my retreat, lest I be seen by a family member failing to knock! We live on a quiet dead end road, where virtually the only traffic past my window is our uphill neighbours; but nonetheless I sit with a hat pulled low, and reflexively cover my face if I hear their car. And she is a nurse! For goodness sake.
Why? …I am thinking out loud… Why am I so afraid? Elbow crutches and even my first wheelchair were nothing compared to the dread that I feel about being seen mask-encumbered. I’m not particularly afraid of the device itself; which is odd because on the day the specialist first suggested this machine he mentioned that some people need to use them 24/7 – a thought that I found shocking. I’m not afraid of the machine; indeed, it has become a friend. But I am deathly scarred of you seeing it. Why is that? It might be that this, more than any of the other devices in my not inconsiderable enhanced-living-arsenal, strikes to the core of life. While I live I breathe; and vice versa. I suspect that my fear is that this step is finally, after four years, too dramatic. I’m frightened that I will frighten you. I’m frightened that your fear for me, or your fear of me, or just fear itself, will distance me from you. I can’t speak to you while this alien nymph has hold of my face, and that breach of communication symbolises what I fear most: that you and I will drift apart. Or be forced apart, prised asunder. Moreover, I dread the reassurance that it doesn’t matter, and that it won’t happen, because I think it already has.
Well, I’m pleased to have got that out! Now we shall soldier on. Or as my Mother would sometimes say, (how odd to only remember this now),
“On our way Rejoicing!”