Living Between the Lines

So, what are you doing these days?

“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?

I am an Author, wife to one, mother to five and grandmother to six. I live in the English countryside in Hampshire, UK, with my husband and two dogs and am a non exec Director for Glow


  • hilarymb

    Hi Deborah .. oh dear .. life can take us by surprise … and I’m somewhat bemused that the other party didn’t know your recent challenges …

    However it does seem that some settlement is in place, giving you a degree of respite … the whole episode must be traumatic and will be ongoing as best can be arranged …

    My thoughts as you travel along this prickly path – and talking about steam punk on a regular basis must be very trying … all I can say is all the very best for the coming future with no hassles or unexpected happenings … I think you’ll probably remember the elevator speech or variant in the future … look after yourselves … HIlary

    • Deborah Barker

      Hi Hilary, to be fair, the other party has had her own trials and tribulations and I haven’t seen her to chat to for some time. Maybe, had I put the question to her, she would have had the same problem!

  • Teresa

    It’s the kind of question I hate! Not that I’m asked very often, but I always end up muttering some sort of apology and I’d never quite realised why before. I’d never heard of elevator speeches, but what a good idea. I’m going to see if I can prepare one!
    You have had an incredibly difficult year – I hope things will become easier x

  • patricia

    My mum has been gone for 5.5 years now and I just finished emptying her file drawers and shredding the taxes and cleaning up all the things I had to hold on to for 5 years. In the middle of my mum’s fractured back, and moving her into our house for care – she was outliving her nest egg by being 91, my sister decided to make felony charges against me for improper handling of a vulnerable seniors finances. So I had to hire a lawyer – actually two – lost my counseling position and have to go back to school big time to get licensed again and my ethics standing for my ordained position in the United Church Of Christ was suspended.

    My sister felt I was totally capable of cleaning up the messes and feeding – I was keeping a very bright mind active and totally in charge of her own funds….hiring care givers, paying the taxes…attempting for awhile to get my brother to come and visit and my sister to speak to her mother on a cellphone ( which we were paying for so she could have her own phone during the hospital stays – mum could wear it on her person and all her friends could call and have lots of visits. ( My sister felt it was a waste of money and too new an invention)

    I damaged my kidneys…and did the work and organized and got a car that my mum could get in and out of – did all the medical paperwork and treatments….and spent nearly $10,000. getting my credentials renewed and then my mother died (94)….I wrote the memorial service, made all the arrangements – for a 4th time packed up all her things and distributed them, including postage…and now I am putting in the final tax forms and am quite unemployed at 63 and no one wants me – I had to give up my ordination because I do not have enough funds, to go to the required meetings and trainings and my husband has done enough care and feeding of me and my mother…

    I still just talk about walking and reading the good books that the publisher’s send me….I have a lunch group with 2 80 year olds and one 50 year old who is moving across country this summer.
    I am working very hard at regaining my health and not being a burden ( financial or health) to my spouse or children.

    You opened the door here…I do not have the funds to pay someone to listen….after 5.5 years and all the work that I have completed I am very tired …..I think writing 3 blogs has given me a purpose but not enough funds to live on or pay my way….and then this past week – my sister sends me a letter – …..

    I hear you loudly and clearly – I do not think I have the energy to write a little speech…:)

    • Deborah Barker

      An open door is easy to walk through Patricia. I am glad you did. I think your speech should just be, “After 5.5 years and all the work that I have completed, I am very tired.” That speaks volumes. I do hope you find the energy to move on and I hope your sister can be more understanding in the future.

  • screenscribbler

    Now there’s a question that can knock you sideways if you are unprepared. This fairly standard question could be from a close acquaintance who has a genuine interest in you as a person, or maybe from someone who has more interest in herself and is merely measuring you in oorder to compare and contrast.
    I like your idea about having an elevator speech Deborah.
    In a recent interview I was asked the standard question “where do you see yourself in five years time.?” This is usually the point where the interviewer can sit back and let the interviewee waffle on for a couple of minutes. My one word answer was “Retired.”

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