My Personal View of Having a Disability

Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.

Mary Anne Radmacher

One of my blogging friends, Melinda, from ‘Looking For The Light’, posted on her blog that March was Disability Awareness Month. I hadn’t heard of this, possibly because we don’t have this day in the UK. However, I’d been thinking about writing about my view of being a disabled person. I said I would do this before the end of March, as it seemed an appropriate time to write my own perspective.

So … just a bit of background information … Many years ago, I was involved in a fairground accident, which injured my cervical and lumber spine, meaning that some of the nerves from these areas were damaged. This affected my ability to walk, move, feed myself, or drink out of an ordinary mug or cup. I had a lot of care to begin with, but was determined to be independent.

I’ve come to terms with my accident and my disability. I wouldn’t have it any other way now. If I were given a wish, it wouldn’t be to rid myself of my disability. I am who I am; I am learning to love and care for myself. I can manage a few steps with a walking trolley indoors; I have an adapted kitchen and a wonderful electric powerchair called Alfie, who is my legs and wheels combined. Alfie allows me to travel independently. I don’t drive. I can’t even get a taxi; believe it or not, my town has no wheelchair-accessible cabs!

Buses are a nightmare and nigh-on impossible to navigate. Trains are relatively easy (except in the rush hour), as I learned from visiting London (40 miles away) to see my late Mum when she was in the stroke rehab. hospital. Travelling in rush hour means being packed like a sardine and at the exact height to be thumped on the head by someone casually throwing their bag onto their shoulder. Worse still, in the crowds, I’m perfectly lined up with all those armpits – close up – some more fragrant than others!

Travelling about is both a frustration and a joy. I can ride at 8mph (13 km/h), which is pretty speedy, and I am lucky to live near a foot/cycle path that takes me into town. I never knew which side to travel on, given that I’m neither a pedestrian nor a bike. I used to get dirty looks from disgruntled people on either side of the path. Well, where on Earth am I meant to go? I now drive down the white line in the middle! Problem solved!

The weather can be a challenge sometimes. I can’t use an umbrella as I’m driving with one hand and holding my bags with the other. If it rains, I get soaked – simple as that. I’ve got used to it, and knowing that my skin is waterproof and clothes will dry off, it really doesn’t bother me anymore. Yes, I could get one of those plastic capes for wheelchair users, but I wouldn’t be seen dead in one of those! So, does it serve me right if I get soaked – yes, I guess it does! Snow is out of the question. Living at the top of a steep hill, as I do, makes it far too dangerous to even step foot (wheel, in my case) out of the door.

Also, I have two major phrases used by many people, most commonly found in (but not isolated to) the US, both of which I detest with a passion. The first is one I hear said a lot on American television programmes, and that’s the use of the word ‘handicap’ when referring to a disabled person or in a car park as the description given to the allocated ‘handicapped’ parking space, as opposed to, in the UK, where we have accessible parking spaces or Blue Badge parking. The term ‘handicap’ is only used in the UK as a type of insult these days.

The other phrase that gets me is the description of a disabled wheelchair user as ‘wheelchair-bound’ or, worse still, ‘bed-bound.’ I’m not bound to my wheelchair or my bed by ropes, as the phrase might suggest. Please, think before using those terms. Thank you.

My pet hate is being stuck indoors against my will, either because of the weather or, like this week, because my battery decided to fail, and I had to wait two days for an engineer to come out to fit a new one. I feel a sense of panic as my independence is taken away, and I’m trapped at those times, and that’s not a desirable feeling for anyone. If you can imagine giving up your legs for a while, that’s what it feels like for me not to have my wheels. If all else fails, thank goodness for online shopping and Amazon.

Finally, I count myself lucky. I realise that not all disabled people feel the same way as I do. This is just my personal view of living with a disability and being a wheelchair user. I am, on the whole, very happy in my own skin.  

If you have any questions you would like me to answer, please feel free to ask in the comments section; alternatively, you can reach out to me through my ‘contact me’ page. Thank you.



A Tired Day (A Poem)

I got up in the morning feeling rather low
I just cannot get going, and my progress is slow
I guess I can’t be happy every single day
Right now, at this moment, I’m wishing time away

Can’t concentrate on reading and not able to write
I’m still in my pyjamas and looking such a fright
The cat’s come out in sympathy; she’s looking all forlorn
She’s been dozing in her box, which is tattered and torn

She won’t go in the garden and doesn’t want to eat
She’s crawled out of her box and is sitting at my feet
The pair of us are moping all around the house
She’s not even tempted by the resident mouse

Should I call the doctor, or perhaps, I’ll call the vet
Both will cost a fortune, and I’m already in debt
I sit here looking vacantly through the kitchen door
Wondering what to do; I’m just dithering for sure

Here comes the local tomcat looking for a fight
He’s sitting on the fence in the last of the day’s light
My cat isn’t interested; she doesn’t want the stress
She wants to chill out; perhaps, a game of chess

I’m no good at games, so she’ll surely be the winner
I’m making up excuses like I’m going to cook the dinner
Later on, in bed, we can sleep away our sorrow
Roll on, ticking clock; we can start again tomorrow.



Photo by Rick J. Brown on Unsplash



The Death Café (A Poem)

TRIGGER WARNING: This poem discusses thoughts about death and is not intended to upset or offend anyone. The Death Café is held monthly in the back of an art shop in town. It’s not at all morbid; it isn’t a grief or support group, just a place to discuss the topic openly and ask questions. It isn’t about religion, or lack of it, It is open to anyone who wishes to know more and, perhaps, has some unanswered questions about death in a practical sense. This is about my first visit there.

I woke up early to a mackerel sky
With rain afoot in the weather’s eye
Thoughts turned to how I wanted to die
You may be puzzled and wondering why
 
I went to a Death Café with my friend
By writing this, I don’t mean to offend
Each debated how we would like to end
An honest discussion; no need to pretend

I hadn’t been to a Death Café before
I was a bit nervous as I walked in the door
Curious to know what was in store
Eager to learn and keen to know more

Seated inside were six women, four men
I listened intently; made notes with my pen
Wondering whether to go there again
It’s only monthly, so I’ll decide then

I spoke to my children last night; you see
Asked them how they would remember me
I told them I want to be laid by a tree*
Said we should get together, us three

My daughter agreed; she was perfectly fine
My son stayed silent and sipped his wine
We all have to go at some unknown time
But ultimately, the decision’s not mine.

*I’m passionate about trees and nature. I told my children I wanted to be buried close to a tree, preferably an oak. If you’d like to understand more about my passion for trees, you might like to read my post about a conversation between a special Tree and me Tree.

(Photo by Jordan Benton: https://www.pexels.com)





Live Life – Note To Self (A Poem)

Do you remember the early days
when you were really a mess?
You caused your friends and family
an awful lot of distress

You never thought at that difficult time
you could grow and make a change
You were far too ill to see it, then
Psychotic and very deranged

You’re now no longer the child that died
You’ve rid yourself of the pain
You’re now a responsible adult
Cut free from shackles and chains

You’ve now begun to make peace with yourself
Don’t have all that pain inside
You pulled yourself up by your bootlaces
and new guidelines you’ve applied

You know life won’t always be easy
We all have our trouble, our strife
So make the most of every day
Because you only get one life

Now here you are in your sixties
and you still have a future ahead
Leave behind those constant regrets
Live your life to the fullest instead.




Photo by Sebastian Arie Voortman: https://www.pexels.com




Dear Guilt … (A Conversation)

Dear Guilt,

I’ve been doing a lot of thinking lately and have decided that it’s high time for you and me to part company. I’ve been carrying you around like a large basket of groceries for many years, and you’re getting too heavy for me to manage anymore, so I finally made the decision to break up with you.

You can’t do that! You can’t manage without me in your life. I’ve always been with you, and you need me; you know you do!

No! I don’t need you anymore. Whether you like it or not, it’s time for us to go our separate ways. I won’t be held back by you; you’ve had me chained to your judgements and doubts for far too long.

But, please, don’t do this to us. We can’t survive without each other.

There is no us! I can survive quite happily without you pulling me down day after day, week in, week out. I don’t want you in my life now. It’s time for pastures new. I refuse to be dragged back to the past whenever you feel morose or emotional.

But what will you do without me to remind you of all those years you were abused … those years when you didn’t tell anyone? You know you should have told, don’t you!? Why did you keep it so quiet?  It’s such a massive part of you and a part of you that deserves not to be forgotten. Surely …

Now, listen here, Guilt, you’ve been reminding me of that for decades. Just stop it!! I know it wasn’t my fault – I was just a small child and too young to comprehend what was happening to me. I’m not going to feel bad about it any longer. I’ve discussed all this in my last lot of therapy. You continually pulled me down even then. I don’t know why I listened to you.

I thought you said you wanted to continue to discuss your past experiences with your new therapist when you get one. After all, why else go to see a therapist if not to deal with your past?

Look, I’ve done all that! I’ve thought it through thoroughly in the break. I don’t need to keep dragging it up from the past! Just because you want to cling to the pain and awful memories doesn’t mean I want to do that again. I’ve been there, done that, and worn the t-shirt. When I see a new therapist, it will be with a view to moving forwards, not to keep harping on about the past.

What about all those years you were an addict? You remember; when you’d get off your face with drugs and alcohol? You were hopeless without it, just like you’ll be hopeless without me. You know how worried and cross you made your family and friends. No one wanted to know you back then – only me – there was only you and me together. I never let you down. I was always there to remind you of how good I was to you, that I was the only one who stuck by your side.

My family and friends understand that I was ill back then. We’ve spoken about those times over the last few years. I was very mentally ill. They knew that, but they didn’t know what to do to help me. I had to sort myself out with help from the hospitals and doctors. And I did. And I didn’t need you lurking in my mind all day and night, trying to suck me back down. I do not want you in my life anymore! Do you hear me? Can’t you get this through your thick head? I’ve had enough of walking hand and hand with you.

But … you can’t do this to me. You can’t do this to us. I … we …. Listen, we can start again. I’ll be good to you. Honestly, I will.

Really? Seriously, Guilt??  Just go away!!

What do you mean, go away? You’ve always held me so close and told me how much you needed me. I needed you, too. I still do. You need me, too. Who will you be without me? Who would we be if we were not together? How would we live without each other? You can’t do this to me. I’ll die without you.

Look, Guilt, I’m not going to say this again. I’m sick to death of having you hanging around my neck. I don’t need you – do you get that!? You’re going whether you like it or not. You’re out. We’re over. I’m not going to feed you anymore. You can go and shrivel up in a corner and disappear. I don’t care, I do not care. Get it?

But … please, think again. You know you …

NO, GUILT!! NO! I TOLD YOU. I WON’T TELL YOU AGAIN. YOU’RE JUST A BULLY. JUST GET OUT OF HERE. BYEEEEE …




Photo by Road Trip with Raj on Unsplash





The Gong Bath (Poem and Introduction)

Last night, my friend took me to my first Gong Bath. I’ve never experienced anything like it before. It was just incredible and I felt all my problems, worries, aches and pains disappearing as the sound increased. Deep, deep gong sounds resounded through the room and through my body. I’ve added the video at the top of my post – it’s just under thirty minutes long, but I suggest, if you just want to have a quick listen to understand what I could hear, you could listen in for a couple of minutes from about twenty minutes through the video. This morning, I feel fantastic, relaxed and at peace. I can highly recommend going along to one of these sessions if the fancy takes you.

Chime, bong, ching, dong …

What an amazing experience

last night

my first-ever encounter

of a Gong Bath

and singing bowls

sound reverberating

through the space

into the dimly lit room

candle and incense aromas

filling the air around me

surrounding

my whole being

as I lay on a mat

on the wooden floor

feeling the vibration

moving deep within my body

calming my mind

quietening my thoughts

drifting away

as the sound grew louder

and louder still

relaxing every muscle

and sinew

floating away

panpipes softly playing

humble notes

time non-existent

beautiful spiritual bliss.

Writer’s Block

I’ve been sitting here all day, staring at the clock
I’m trying to write a poem, but I’ve got writer’s block
I’ve got several partly written, but none of them seem right
As I’m looking at this naked page where everything is white

I’m getting so frustrated; oh, come on, get on with it
I’m stuck on what to write, and time’s getting on a bit
Get your brain in gear, dear; don’t sit there in a huff
I know you’re getting bored, and you’ve really had enough

I could try again tomorrow, but I want to write today
There’s a lot on my mind, and so much I want to say
I’m refusing to give in and will not give up the fight
If I have to sit here crying all the way through the night

It’s coming up to dinner time; I’ve not got anywhere
I think I’ve lost the knack; at least, that’s what I fear
I could watch the telly, but the signal is on the blink
So, I sit here, mind vacant, and I don’t know what to think

I’m at the point of giving up, but I’ll know I’ll be so cross
If only I could say that I don’t give a blooming toss.
But, no, I simply can’t, as I was hell-bent on achieving
Now, I’ve lost all my words, and I sit here sadly, grieving.





Photo by Steve Johnson on Unsplash

Filling Holes

I feel lost without the space where I once sat
And the easy way I used to be able to chat
About so much that was bothering me
Dealing with it all in my now absent therapy

I’m now on a waiting list; I hope a place comes soon
Feelings and sentiments are confusingly strewn
What to do with all this time that goes so slowly by
Waiting for a new assessment; I hope I qualify

I miss the reassurance that I could cope
I like to think I can, and I still have that hope
I must find other means with which to fill my days
Emotion, when choked back, finds other ways

I’ve found myself with lots of empty holes to fill
I somehow have the energy; I need to find the will
Thought I’d visit a workshop to try my hand at art
A brand new shiny hobby I could possibly start

Wednesday night, I’m going to circle drumming
Listen to guitars in the next room gently strumming
Beating the drums will get pent-up feelings out
Dispelling anxious tension, I have no doubt

I don’t need to be perfect; just try to keep the beat
It’s easy to catch on to; no need to be discreet
It’s about celebrating life and having lots of fun
I’m passionate about it, and I’m not the only one

Thursday afternoons, I’ll go out picking litter
Even when the weather is absolutely bitter
I’m with a group of people; wouldn’t dare to go alone
Filling council bags with rubbish that’s been thrown

Papers, tickets, fag ends scattered in the park
It keeps us very busy until it’s almost dark
Doing something positive to while away the time
As out of my despair, I’m slowly learning to climb.


Photo by Markus Winkler on Unsplash

Please Don’t Label Me

Please don’t label me

Let me grow up tall

Let me choose for myself

Who I want to be

I was labelled a difficult baby

Subsequently so, a child

Then an awkward teenager

An adult with disorders of the mind

I don’t like labels

If I am labelled

It adds to my load

Emotional baggage

Which goes charging

Through my life

Like a buffalo

In the Wild West

Or like a stranger entering

The Last Chance Saloon

To encounter a low-life

A corrupt villain with a blade

Who stares me out

As the midday sun gleams

And catches my eye

Through semi-closed shutters

Let me choose

Whether I live or die

If I choose to live

Let it be my decision

Don’t pin me down

Or tie me to a post

With shackles and chains

And take my options away

Don’t take my choice away

Don’t take my voice away

Let me shout out loud

My opinion counts

Let me run free

Across the dusty plains

Let me choose who I am

Don’t label me.

(Photo by Erwan Hesry on Unsplash)

A Christmas Poem – (Dedicated To My Dear Mum)

It’ll be six years soon; I lost my dear Mum
Counting the years, five fingers, one thumb
No Christmas together, as too far away
Missing each other on this special day

We could have been sad, both so alone
But giggles (and tears) made their way down the phone
We chatted at breakfast and chatted at dinner
Turkey or nut loaf; the loaf was the winner

Opening presents that had come in the post
Mum sipping a sherry and sharing a toast
Me with an alcohol-free sparkling wine
Sober year count more than eight or nine

Reading our cards to each other out loud
Many have come from the family crowd
Dinner now ready, so we stopped to eat
Cranberry sauce; still good without meat

Christmas pudding came next, of course
Vegan cream, custard but no brandy sauce
Crackers, for one, were out of the question
I’ve eaten too much, and I’ve got indigestion

The TV is on showing Morecambe and Wise*
Jokes and throwing custard pies
Somehow, it’d got to quarter past eight
No washing up done and getting late

I’m alone once again this Christmas Day
But on Monday, the children will come and play
My wishes to all are full of good cheer
So, Happy Christmas and a great New Year.

(FOR MUM WITH LOVE – RIP 30/12/16)


(* Morecambe and Wise was a popular Christmas comedy programme in the UK years ago).


Photo by Roberto Nickson on Unsplash