Dear Autismspeaks I write this as a man diagnosed with Asperger’s Syndrome who is a high functioning business professional, as well as ...
This morning, this was posted by someone I follow on Twitter. Person from abroad: you're so lucky to live in England Me: hahahabahah...
Monday, 9 December 2013
Weathering the storm of unexpected change.
I am furious!
Today, I was due to have surgery on my hand, a surgery which I had been preparing for since mid September, and been working through the details of since mid November. Today, I got up at 5 a.m., as did wife and kids (well, actually, sometime between 5 and 6) to be at the hospital for 7. I had prepared myself mentally: go in early, get seen early, see consultant, see anaesthetist, go to theatre, general anaesthetic, surgery, wake up, go home. And to start with, it went according to plan.
Until the anaesthetist turned up, and decided he would rather do a local anaesthetic than a general, and spent time trying to pressure me into that. After 10 minutes of cajoling, I told him I had spent weeks preparing for general and I don't handle last minute changes of plan well. He could see I was getting upset, and agreed to do a general if that was feasible.
That shook me up some, and I started reading my book to try to calm down. Just after 9, wife arrived, almost simultaneously with the returning anaesthetist, who tried to tell me as politely as possible that he was sorry but my surgery couldn't go ahead today, but the good news was that they had already booked another appointment for me in a different hospital.
So, to anyone reading this who knows about Asperger's and has been following my blog, how well do you think I took that? change of date, change of venue, sudden call off after an attempted change of plan on the day?
Safe to say the simplest description would be "not well".
I sat in silent shock, I cried, I stormed off, I came back and shouted, I stomped out of the building before coming back to try to find out when they had booked me for, and it turns out that they think the best time to operate is the day before my birthday (a day which has always been disastrous to me).
I was so angry! There's no way they can understand the amount of mental preparation I have put into this, not to mention discussions and agreements I have had at work - a job I only started the week before I found out I needed surgery - to ensure that they understood the need for this, and let me have the time off that I required.
And if the fact the surgery was cancelled wasn't bad enough, the reason for it was, put simply, that I'm too fat.
Seriously. I'm too fat to have surgery on my wrist and thumb. Funny how that didn't come up in the hand clinic originally, or in the phone consultation when I gave them my details including my weight and height. No, I'm too fat today for the facilities at this particular hospital, and I'll need to have surgery at a different one.
So, to recap: the surgery was cancelled, on the day, at the last minute, when I was already in my surgical gown, wearing tags and with lines drawn all over my arm to indicate where incisions would be made. The anaesthetist said I was too fat to have surgery and rebooked me to another hospital, closer to Christmas which has, by the way, already interfered with my Christmas plans.
Like I say - furious! It has taken me a good 3 hours to calm down to the point where I don't want to scream about this! This is exactly why we need services like ASQ to be able to collectively list experiences like this so service providers have something they can refer to and see examples of good/poor service and how it affects the ASD community.
So, now I have to prepare myself for surgery again, in 11 days, in a different hospital, at a different time, as well as come to terms with my weight - and let's face it, being told you are too fat for surgery, apparently because I would likely breather equipment, is something of a wake-up call!
Of course I can do it, but the level of stress this has given me today is just unreal. So much, in fact, o have decided to still have the day off work as I don't think I would have achieved anything in this frame of mind.
God bless the NHS.