“So, what are you doing these days?”
Don’t you hate that question? Doesn’t it throw you? It is fine if you have just come back from exploring the Antarctic or something similar. A few stories from your adventures and you’re done. (I have never explored the Antarctic I hasten to add.)
Otherwise, unless you are talking to your mother or a close family member, you probably have about ten seconds to grab your interrogator’s interest or at least, to let them know you are not a total waste of space.
It happened to me the other day. “Ladies who lunch” had invited me to join them. In the past, this monthly event has been closed to me due to other commitments but at last, I am free on a Wednesday and can attend. On the Wednesday morning in question, I authorised some changes that the care company were making, dealt with a phone call from another care worker, spoke to my nephew (at length) about his latest steam punk gadget, fended off questions about the return of his dog and emailed his social worker with some information she required. I proofed an article for Glow and sent off a short story for possible publication. I checked that the dog we rescued from my nephew’s care, last November, will be ok in his foster home for another few weeks until my older sister is settled in the new home that we, as The Trust, are helping purchase. I then re-read a few chapters of my latest novel and spent half an hour editing.
By lunchtime, I was looking forward to this get together.
The ladies concerned are some old friends, people I used to work closely with and some slightly newer acquaintances. Numbers vary, the other day, there were five of us.
I was asked the question as we sipped pre-lunch drinks. It was a simple question. It was the sort of question we all ask of each other at some time or other. I don’t know why I hadn’t been prepared for such a question. As it was, I stared at my questioner, and murmured something, I am not sure what, that made me sound as though I actually did nothing at all.
In business we prepare what we call, ‘elevator speeches’. I remember years ago, we had to think up an elevator speech for Glow. It needed to say succinctly and interestingly, exactly what the company did and what its ethos was. All this, in the time it takes to travel from one floor to the next.
In personal life, such a speech would be equally useful I think.
It is only with hindsight that I realize that I probably should have said,
“The sudden death of my sister, leaving us with the responsibility of our 29 year-old nephew who has Asperger’s, has changed our lives dramatically over the past year.”
This is true. This one event has had such a profound effect on all our lives that we are actually shocked when people ask us what we do these days. This is because, for the last year or so, we have been completely swamped with learning about a new world. It is a world totally alien to us until now. I refer to the world of social services and care companies, of form filling and disibility benefits. It has been a year of lengthy battles, a place where fantasy worlds such as Star Wars, World of War Craft and Steam Punk are all that concerns our nephew. These virtual realities are his ‘norm’.
We have had to battle with an inadequate and sadly, downright abusive care company. We have had to attend Will readings, Trust meetings, emergency care meetings and safeguard meetings, best interest meetings, meetings with solicitors to create Power of Attorney, meetings to implement new care plans and more. We have been shouted at and accused of all manner of things by one care company and at one stage had to change the locks on my sister’s house as items began to mysteriously vanish. We had to clear and sell my sister’s house (no light task since she and her husband hoarded for England) and buy our nephew a new, smaller abode. This one act took all our strength for a while. Asperger’s means that our Nephew hates change, he hoards rubbish (it is not rubbish to him) and he wont throw anything away. He imagines that we are trying to swindle him out of something instead of creating a safe and happy home for him where he can thrive and have some cherished independence. If he runs out of money for his fares to his work placement, having spent it all on eBay, it is our fault, if the house is a tip, it is our fault because we have hidden things like the dustpan and brush (they are probably still packed in a number of unpacked boxes stacked in his garage). We have needed an extraordinary amount of patience and understanding this past year and though we do not resent the time and effort it takes, it has taken its toll on us all.
I should add that we have also met some extraordinary people whose patience and understanding has been second to none and our admiration for the care and services they provide, has grown day by day. It is also good to see our nephew beginning to achieve the independence he wants, albeit with a strong support system around him. We can at long last, feel the pressure dropping.
So, next time I am asked that question I will say,
“I write when I can and enjoy grandchildren and family but when my sister died suddenly, just over a year ago, leaving us responsible for the welfare of our 29-year-old nephew, who has Asperger’s Syndrome, my whole life changed.”
If the person asking the question wants to know more, they can ask.
Do you think I will remember my elevator speech the next time I am asked the question? …
…can I carry flash cards?