A conversation.

A conversation with an old Uni friend :

I don’t know if this is directly related to how you’re made to feel every day, but I’m learning from you that it seems that even though as a society we have become quite good at providing physically for those with disabilities there is an emotional component lacking e.g. an elevator out of commission and you’re stuck, your bag failure, the lady on the bus who wouldn’t acknowledge your right to use the space physically assigned to you, the delicate-and-easy-to-damage-but-difficult-to-replace plug on your wheelchair. Am I right in thinking that as a society we need to develop a better understanding of the emotional aspects of living with a disability so that we can design the physical provisions better for when the worse-case happens to that provision? And that we also need to create a more empathetic society so that people understand better someone’s reliance on an elevator service or space on a bus?
An aspect of my work is to make sure that we meet the physical needs of those with disabilities, and reading your blog and writing with you is giving me a better understanding of those needs – beyond the physical. You’re highlighting issues that many would keep very quiet about, but that are worth us all understanding happen to you. You are affecting change in society, one blog post at a time!


My reply –

Ahh A Man, thank you for saying that.
Oh for sure I believe people have no clue. People just seem to think everything is the same for me but I’m just sat down- and everyone likes to be sat down, right?
People have no concept of what it’s like to not have any control or sensation at all below in my case the chest.
You can’t, unless you’ve had it.
I think that society gives me less than the respect that is due, because ‘ surely it’s not that bad, and surely you can manage those 2 steps??? etc etc ‘

The emotional effects are huge. They’re massive.
It’s so upsetting it’s beyond comprehension, to not be able to do normal things, really easy things, and to have to ask for help with so much because they just are not possible to do.
You have to swallow it all and endure, or choose death/ hiding away from everyone and everything, trapped in your prison. Partners leave, friends subtly shun you, and it’s because THEY can’t cope with it, so they turn the other cheek and pretend you don’t exist anymore. I totally understand why people do that, people take the easiest choice, and im sure I was equally guilty of doing that, before my ‘ forced enlightenment ‘. You’re left partnerless, friendless , even your children turn away from you. People that know me might read this and think ‘ oh, he’s having a bad day, by the looks’ but the reality is that EVERY SINGLE DAY is a bad day, and it’s never going to change, ever, so you have to suck it up.

I’m by and large ok at the moment, but thoughts of ‘ why don’t you just make it easier and kill yourself?’ just pass through my brain at quite random but regular intervals, often when I’m least expecting them. Fatigue from just trying to endure, makes these thoughts more regular, as I’ve found yesterday, after a spasming lack of sleep, then finding out I would shortly be homeless, officially.
The normal world carries on regardless, not really caring, let’s face it.
Will it ever change? I doubt it, unless everyone is obliged to spend a month like me, with all my challenges, drugs administered to stop use and sensation of body for that month, just to glimpse the awful reality, just to see how they’d cope out there in the world, a world that is made for normality not abnormality.
Most would spend the month crying and broken I think, even though that month would end and normality would return.

Depressing stuff, I’m afraid, my friend.


One if thé most inappropriate things to say to me is ‘ Hey, All Good?’  Imagine you had just been diagnosed with cancer, maybe lost your child or parent, or had your hand amputated, and someone asks you that… of course they mean well, but it’s a pretty daft question in the circumstances, and completely non befitting the reality. Of course I am not ‘ all good ‘ – it’s painfully obvious, and when someone says that to me, my reality swamps me. I don’t react, and I smile as a response, but what I’m trying to say is to ‘ be aware of my/ another’s situation, and don’t pretend everything is fine when it patently is not ..’  because it’s more harmful than it is good, for that person.


5 thoughts on “A conversation.

  1. Courageous indeed! If it helps a little, my Mum suffers awful torment following my Dad’s death for very the same reasons. She loved him very much, too. And like your dear husband no doubt, my Dad knew he was so very loved xx

    1. Thank you very much for your kind words. I loved my Husband with all my heart but it was really hard, especially at the end. He went back to his childhood and I still feel guilty that I lost my patience at times. I feel guilty that I signed the D N R form and also that I wasn’t with him when he died. When he was ill reading Russ’s blog every day inspired me to keep me going. I promised him when we married that I would look after him in Sickness and in Health but I did not realise when I was that 24 year old that I would have to do everything for him one day. Margaret x x x

  2. I hadn’t the slightest idea how you felt until I looked after my Husband for well over a year. He couldn’t do anything for himself after he had a stroke and was also diagnosed with prostate cancer. Looking after him was the hardest thing that I had ever done. I used to dread waking up every morning. Before I pushed my Husband about in a wheelchair I used to look at people and think to myself I would love for someone to push me about in a wheelchair – it would save me walking anywhere. I used to get irritated when I was on a bus and someone in a wheelchair used to get on because it held the bus up. I still feel guilty now that I wasn’t always patient with him and when the Hospital said he had weeks to live I was quite pleased. I was pleased for myself that I wouldn’t have to care for him much longer. That is a really awful thing to say but I couldn’t help the way that I felt. Love to you Margaret x x

    1. Margaret,

      That must have been a very difficult thing for you to write, and brave of you to have done so, ‘ so publicly ‘. Of course I understand how you felt, and it’s not a crime to think that way – it’s just human nature to think through occurrences ( his death ) and how you might react to it.
      I know how much you miss him. It’s clear to me.
      Russ x

      1. Thank you for your kind words, Yes I do miss him, not the last couple of years how he was, but how he used to be. Love to you Margaret x x

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