I haven’t written a great deal this year. To say it’s been full is an understatement. Amongst other significant things my eldest daughter has completed her journey through university and landed on the other side a qualified Speech Therapist. She can now gently, but firmly, berate and correct my speech deficiencies as a professional rather than an amateur. Her final dissertation only reflected the dedication she applied to her profession by receiving a resounding well deserved First.
(How utterly proud of Emily am I?)
After spending the last four years waiting for that day to arrive, when I believed she would be treating small children to manage a reasonable “S” as they spoke with – in the scenes in my mind – brilliantly comic results, involving covering their enraptured audience with saliva and lots of slurping, imagine my surprise when I discovered her job entailed so much more.
From treating a variety of neurological disorders, dementia, stroke victims and adults with learning difficulties, it was a vast distance away from what I believed she would be involved in – taking off a water proof smock and mopping up a small child’s spittle after a session of teaching him to say
I actually felt slightly cheated when I realized how in-depth and serious her job was. Not, I hasten to add, that I take any of these conditions lightly, but like any normal healthy individual leading a busy life, it never really crosses my mind much until it’s placed firmly in front of me.
Meeting some of the people she has befriended during the last four years in Sheffield completely humbles me. But I wouldn’t have met them if Emily wasn’t Emily and had taken the opportunity to embrace friendships that I would have shied away from, because, I’m honest enough but also ashamed to admit, they were so far outside my comfort zone of dealing with.
If we come into contact with someone with a significant disability we automatically treat them as slightly invisible because we don’t know how to relate comfortably with their illness. So instead having a normal conversation, we end up slightly patronizing, or talking far too loudly to them because, of course, the natural assumption is they’re slightly simple too. After all, everyone knows, If you shout a question SLOWLY BUT CLEARLY, they’re going to UNDERSTAND IT…
It was only through Emily that I met such a person to find – and I have to say it does actually distress me somewhat – he was a perfectly normal person trapped in body he couldn’t control and communicated by blinking his way through the alphabet. But what a sense of humour!
There’s been many a Christmas I’ve been half drunk and some genius always shouts out to play a party game. You know the one? Label stuck on your forehead while you take turns to guess who or what you are by asking questions. As soon as you get a “No” your turn ends. Then you have to wait 10 minutes for your turn to come back round. By which time, I have no idea what I asked in the first place and begin a deja-vu existence of asking the same questions for the next hour or so.
So I’m sat with him and I know eyes up mean A to L. Eyes down M to Z. He lets you work through the alphabet and blinks to stop you at the letter, eventually spelling the word.
I sat and weighed it up. This man, his situation. The cage that was his body and how he had to communicate. And I had to warn him upfront.
I told him I thought I must have a concentration deficiency and to please bear with me because I would ,
A. By the third word have lost track of the previous two and
B. By the 4th, have forgotten wtf the question was in the in the first place and
C. It was just a small mercy that I wasn’t dyslexic.
I can’t even begin to tell you, how humbling it was to meet such an inspiring person. How much he laughed in the space of time I was lucky enough to spend with him. He saw the humour in almost everything we talked about. And the most animated expressive part of him was his piercingly blue eyes.
Emily has since returned to Manchester but is in regular contact with him and she either travels to see him or he travels here with his helper. That’s for another story.
But that’s Emily. She is probably the kindest, most patient person I know and I don’t know another person who enriches others so much just by giving them out-and-out committed, unsolicited attention.
It completely took away the comical, thigh slapping images I’d spent four years streaming through my mind of what her future job would entail.
Yet again I had a life reminder of how unfortunate some people are and how distressing some of these conditions can be for those involved. As much for those suffering as for those surrounding the patients and being forced to witness a neurological illness or devastating decline from one.
But for all the devastation there are soaring displays of bravery,unselfish kindness, humour and – even – laughter that shines during such terrible set backs.
I have a relation who is suffering from early dementia and I have to say it makes me look at my own life differently. I love seeing her because she’s one of the few people in the world always pleased to see me. And, she always greets me with,
“Michael, you were a such a beautiful baby!”
Not even my own mother tells me that. (But I was.)
I have to say I have a dread of reaching a point in my own life and discovering such an ailment in my self.
The plus side is – and I seriously don’t mean to treat this lightly – there must be moments of total obliviousness to the decline in mental state for the stricken person. But then there must be totally distressing times when you are aware of what’s happening.
My Auntie’s family keep it as light hearted as possible with a wonderfully, and at times black, humour.
For instance they have a bench table dining set in the kitchen and get her to lie on one of the benches. Then, they carry her round the kitchen on it.
Practicing her funeral procession.
And give her a running commentary. They love it. My auntie most of all actually.
Some of the instances that arise are sad but funny.
I was at a wedding recently and was not drinking so offered to drive my Auntie, her daughter and her husband home so they could leave their car and have a drink. As we left the venue my cousin collected their coats from her car then waited at the reception while I brought my car round to collect them.
We settled my Auntie in the back, made her comfortable and strapped her in. My cousin sat in the back with her while her husband was up front with me. We set off and made our way some 8 miles down the A34, onto the M60 ring road that runs around Manchester. We were talking quietly about various things and it was probably another 8 miles or so further on in the journey that my Auntie, who – up to this point had been silent in the back – pipes up and the conversation went like this:
“Where’s your car?”
Chris and I shared a glance up front.
“Your car love. Where’s your car?”
There was a moment of silence while I caught Debbie’s eye in the mirror then she replied,
“Its back at the hotel mum. That’s why I took you coat out of it.”
There was a few moments silence as we all tried to weigh up how her mind must be working. Then,
“Yes Auntie Shelia?”
“Where’s your car??”
I have to admit I actually took a moment to look out of the window trying to see the exterior then down at the steering wheel in my hands.
I was definitely driving my car.
I then shared a glance with Chris sat next to me and he answered for both of us as Debbie and I began to laugh.
“Jesus. You’re sat in it Shelia. He hasn’t hot wired this car just to drive you home..”
The next time I heard from her it was via my mum, who had had the story related to her from Debbie.
Apparently Debbie and Chris had taken Shelia to attend the funeral of Shelia’s close friend’s husband. At the reception afterwards Shelia’s friend was obviously tearful and Shelia had made her way across the room to her side with – the most oblivious to her surroundings wonderful question I could imagine – and put her arm around her tearful friends shoulder and said,
“Aww. Betty. Why are you crying??”
The best of it was, as Debbie guided her gently away, explaining where they were and why they were there, another elderly friend with a similar condition made a bee-line for the widow with, at this stage, some serious tears streaming down her cheeks. He placed his arm around her shoulder to comfort her and asked,
“Aww. Betty love. Why are you crying…… ??”
I think it was like a dementia convention.
You couldn’t make it up.
But seriously I don’t mean to treat these circumstances without any depth of respect or to belittle these situations which people are attempting to deal with. But only those suffering from one of these illnesses or those dealing with the decline of a loved one can comment. And I happen to believe my relations – for all the distress that what they have to witness causes them – deal with my Auntie’s situation with incredible rapport and good nature. Reflected by my Auntie’s fairly consistent outward display of contented good humour.
But in my own mind I wish I could roll back four years or so to my totally shielded obliviousness to these ailments, before Emily had to go and qualify and get all serious and explain things..
And still run the lispy kid images through my mind.
My favourate would be an Oliver Twist scene with the unfortunate raggamuffin having to make his way to the front and have to ask for more food with a tongue like a slurpy party streamer.
“Please Thir. May I have thome more..
(and you can only wish)