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!”
14 thoughts on “Does my Nose look Big in This?”
Hi there Rod I just came across your latest blog, vanity thats what it is, we are all human Rod and we all sucumb to it, don’t worry about people seeing you in this way it is purely physical and does’t in any way subtract from the wonderful person you are Pastor Rod. I am so g
lad this is helping you in your time of need and often think of you and Karen and all the family, and i have you all in my prayers. God Bless. Shirley Sanson.
I know the joy of assisted breathing. When i had my heart operation they equipped me with one that looked like a divers helmet and the joy of feeling your lungs filled with air that i wanted it all the time. They wouldn;t let me, I had to breathe on my own.Look up Rod and be thankful for the help
I was only wondering myself yesterday why I can admit online that I’ve failed at something but am horrified at the thought of someone I know and see regularly finding out. Even though I know many of them will have read it online…
We love you Rod. Michael
Yes it is one of the wonders of living with an illness. We can no longer take our next day for granted! New medications new doctors old doctors new procedures it just goes on. Family members seeing a new side of human frailty in the human body. maybe they to don’t take this life for granted as much as we all use to. No matter what-it is still the same person under these devices just a little slower just a little tired just a little more vulnerable. But we still have our wonderful Father in heaven who gives us hope toward the future and while we are here we still count as His disciples His children and He knows the plans He has for us! What a wonderful God!
Wow, this is a great blog, informing the rest of us ‘free breathers’ how it feels to need the help of a machine. You have given me great insight into how a ‘patient’ might feel about using it, and I so appreciate your honesty and vulnerability. Thanks Rod. But by the way, I wouldn’t care too hoots about seeing you on the machine, wouldn’t worry me in the slightest. And I suspect a lot of people would be like me, so take heart 🙂
Thanks for giving voice to feelings that I’ve had about the
RODERICK, YOUR BLOG WAS FANTASTIC….GIVING YOUR READERS A SENSE OF THE BIPAP…..HOPE YOU ARE DOING WELL. PRAYING FOR YOU
Thanks Bruce! Just the sort of ambiguous encouragement the doctor ordered. I’ve enjoyed reading a few of your posts recently, after my cousin in America sent me the link.
Your last few lines gave me pause….. “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.”
It saddens me to hear you express your fear that you have drifted apart from those who matter to you. From my side of ‘the great divide’ I don’t believe it is your illness that has done this but the simple fact that you now live in another town! As is so often the case when ones moves.
There are those who love and appreciate you in THIS town….and who read your blog simply because we dont want to forget you…or in your words… to drift apart. God made you ‘wonderfully’ Rod and in spite of your current situation HE continues to speak to us through the words that you use.
“For we do not have a spirit of fear but of love, power and a sound mind.”
I’ve been listening to a Donna Crouch cd called ‘stormproof’ which has been most encouraging. The thing that encourages me is to remember is that in the middle of the hurricane Jesus comes walking on the water….even when we simply can’t recognise him because of the ferocity of the storm.
Be encouraged friend.
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You continue to very very much inspire me Rod!! God Bless!
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