A Blogger’s Appeal

Our blogging friend Ami from https://undercoversuperhero.com/ is participating in a fundraising event with her husband to raise money for the unit that helped her through a long illness, and continues to help her and others today.

This is her post about that.

We’re Fundraising for the Physiotherapy and Occupational Therapy Departments.

You may have already seen by now that me and Ewan are taking part in the Superhero Tri this year to raise money for the physiotherapy and occupational therapy departments at the rehabilitation centre where I stayed for 6 months in 2018.

If you’re unfamiliar with my story, in 2018 I almost died from double pneumonia, as I slowly recovered I realised I had lost the ability to do everything apart from moving my eyes or turning my head.

I had to learn everything again from writing, typing, brushing my hair and teeth, eating and drinking, to sitting in a chair, sitting up without support, standing up and walking.

In total, I spent 3 months in hospital and 6 months at the rehabilitation centre. It was at rehab where everything changed.

On my first day there, I was dependent on a hoist, but by discharge day I was able to walk with a walking frame (with 2 people assisting me).

I could write a book about how much the staff mean to me, they really are extraordinary people and are the real superheroes.

We’re almost halfway towards our fundraising goal (thank you so much if you’ve donated already!) and I know times are tough right now so if you’re unable to donate, can you please share this far and wide?

Thank you so much!

Here’s my fundraising page. https://www.justgiving.com/fundraising/Ami-Hook-Ireland

If it is possible for you to help with a donation of any amount, please follow the link. If not, then please share this post on any social media you are a member of.

Guest Post: Ami Ireland

In all the years I have been blogging, I have not known another blogger who lived so close to me. Ami lives quite near to Beetley, but so far, we haven’t had the chance to meet.
I am very happy to present her truly excellent guest post here, which is unedited. If you know anyone who is disabled, or who blogs about disability, then please pass this on, so they can connect, and be inspired. And if you feel so inclined, please reblog, or share on any other social media platform.

THE OPPOSITE PERSPECTIVE: I’M MEANT TO BE DISABLED
By Ami Ireland.

You’ve just read the title and probably raised an eyebrow, right? Let me tell you how I obtained that perspective.

A Brief Summary

I’m almost 25 years old, however, for the majority of my life, to say it’s been a rollercoaster would be an understatement. From a very young age, I endured bullying, both at school and at home. I’ve been abused, physically, mentally and sexually. It was no surprise that I was diagnosed at the age of 13 with Depression.
I always felt like I could never be myself, I had to be the person that everyone else presumed me to be. I hated myself and the body I was in. I always sought validation.
But my life changed, most would say for the worse, but in my opinion, it changed for the better.
In March 2018, I was admitted to hospital as I was unconscious. I was admitted to Critical Care/Intensive Care and put in an induced coma to give my body a chance to recover. Everybody was convinced I wasn’t going to wake up. Nobody knew what caused me to be unconscious, but within the first couple of days of being in Critical Care, I contracted Bilateral Pneumonia.
As my body was already very weak, this was killing me. The odds were against me. Thankfully, the NHS saved my life, more than once.
This was just the beginning of a 9-month hospital and rehabilitation stay. In short, I’d lost the ability to sit up, stand up and walk.
I will be honest, at first it was very difficult for me to accept that this was my life now. I felt like I no longer had a purpose in life. I had nothing to work towards.
That changed, two months into my hospital stay, when my fiancé (at the time) suggested that we set a date for our wedding. This was the push I needed, I was absolutely determined to walk down that aisle, albeit with a mobility aid or the assistance from others, I was going to work hard and do it.
In September, this year, I did it. I walked down the aisle, with the support of my Mum and my best friend’s boyfriend. I walked down that aisle and married the love of my life.
But I couldn’t have got this far without a different perspective.

All or Nothing

Before 2017, I was an introvert, I never said boo to a goose. But when I started to lose my hearing, my central vision, and then my mobility; I lost myself even more, I sunk lower and lower into the shell I had already been hiding in.
Back then, I could have had a different perspective. But I gave up. I didn’t want to fight anymore.
However, when I became more aware of my surroundings in hospital, I felt I’d been given a second chance at life – I saw this as a new beginning, a new chapter and a new me, just with a few illnesses and a wheelchair in tow.
I’ve met some incredible people along the way, my physiotherapists and occupational therapist, nurses and doctors, the disabled community and Scope (a UK charity for disabled people) too.

The NHS

For 9 months, I witnessed the amount of work these true superheroes do. As I’d never met them before, this was a chance for me to be myself.
I quickly learned that by being myself, I’m very sarcastic and can have a quick-wit, at times. I no longer held back what was going through my mind, albeit being random ramblings. The more I was open and honest, the more I felt happy with who I was (and still am).
Quite a few friendships were formed throughout my hospital and rehabilitation stay; it was hard not to get along with them as I spent more time with them then I did my family. Hospital settings are usually quite negative, but I wanted to switch that around.
I did have my bad days, but making the staff smile and laugh was a good distraction. Seeing them happy, made me happy.
That’s why I loved being around these amazing people, and why it broke my heart when I was transferred or discharged. They liked me for who I am.

Social Media & The Disabled Community

Social media is often represented very negatively; however, it has improved my quality of life. During the early days of coming to terms with what had happened, I felt very alone, I didn’t know anybody else who was in the same position as myself. Soon, I discovered the disabled community on social media and I simply cannot put into words how much of a positive impact they have made in my life. I’ve never felt so included and accepted in my life!
I’ve made quite a few good friends within the community and it’s comforting knowing there is others who would never judge me, I can share my experiences without receiving pity. It’s incredibly refreshing. So far, I’ve met one person face-to-face, and being with her was lovely. Not only is she good company but I never felt like I had to hide who I am.
I’m planning to meet others, from the community, next year!
With all that being said, I would not have met these people if I were not disabled. I may have come across them or seen them in campaigns, but I would not have the courage to speak to them otherwise. Like I said, I’ve never felt accepted beforehand.

Scope (UK Charity for Disabled People)

If you had asked me years ago if I knew I would get involved with Scope, I would have been hesitant as I’d not heard a lot at all about the charity, only that I walked past one of their charity shops in town (years ago). Good old faithful Google led me to Scope, during the early days I was desperate to find others who had experienced the same as myself. Scope’s Online Community has been my guiding light, the light at the end of a very dark tunnel.
Almost 2 years on and I’m still very much a permanent fixture within Scope. I’ve written guest blogs, got involved with a campaign, and I was the face of their latest fundraising appeal. Being part of Scope has led me to amazing opportunities.

None of this would have happened if I were not disabled.

I’m certain I would still be the introvert I was before I became disabled. Everything happens for a reason. Being disabled has given me the confidence to voice my opinion, aim to change perceptions in today’s society, but most of all, I’m a realist and I’m happy.

If you want to read more from Ami, here is a link to her blog.
https://undercoversuperhero.com/
And you can follow her on Twitter too.
@AmiHIreland

Thinking Aloud On a Sunday

Disability.

Not for the first time, I woke up today thinking about disability. I will be 68 next birthday, and other than the usual ‘old man’ aches and pains, occasional bad Vertigo, and some eyesight issues, I have managed to escape anything worse so far.

When I was young, Polio was still a common disease. I would see children having to wear metal calipers to brace their legs, and saw documentaries on TV about people who had to spend their entire lives in an ‘Iron Lung’, a cylindrical machine that breathed for them. By the time I was at secondary school, aged 11, I was already counting myself lucky to be fit and healthy.

Many years later, I went to work in the London Ambulance Service, as an EMT. Soon after completing my training, I was shocked to become exposed to disabilities I had never even heard about, let alone seen. I learned about the ‘unseen’ sufferers, those too badly disabled or physically deformed to be able to go outside much, or participate in things that the rest of us simply took for granted. They were sometimes collected in buses, and taken to attend ‘special schools’. Schools that were not only adapted for their needs, but where they could be educated with people who had similar conditions, and understood living with them. Those too disabled to go to those schools might be home-schooled, or have private tutors.

I met young people whose bones were so brittle, they could break them just by coughing. Brain-damaged teenagers fully aware of their situation, but completely unable to communicate at any level whatsoever. One young lady who had been born with undeveloped bones in her arms and legs, so although she was twenty-five years old, she resembled a floppy rag doll, and I could pick her up as easily as I could a pillow. A man with such disfigurement of his facial bones, that he was unable to speak clearly, or eat and drink properly. His elderly mother cared for him, giving him liquid food and drinks through a tube that passed down inside his nose, something he had to keep in permanently. He rarely went out, as he had bad experiences of being mocked in public.

Many I encountered had been born disabled as a result of their mothers taking Thalidomide, for morning sickness. That great drug scandal of the 1950s left so many children without properly formed arms or legs. Or both. Alongside those who had congenital conditions, I also came across scores of people who had become disabled as a result of accidents, or after having to have limbs amputated surgically. They had led outwardly normal lives at one time, until that life was turned upside down by the events of one day, or by contracting a medical condition. Suddenly, they needed help with everyday things, often very embarrassing things to need someone else to do. They had to consider learning to cope with prosthetic limbs, using crutches, or being confined to a wheelchair for the rest of their lives.

This necessitated a re-think about how they lived, and everything they were used to doing. Beds moved downstairs, specially-adapted toilet and bathroom, and restricted access to public buildings, and most forms of transport. The loss of much-loved active hobbies in many cases, and even the break-up of relationships, when partners couldn’t cope, or the disabled person didn’t want to be seen to ‘tie them down’. Before I was 30 years old, I started to get some insight into just how much such things affect peoples’ lives.

Adding to the list were those disabled by Mental Illness, Epilepsy, complications of Diabetes, severe Asthma, Dementia, Arthritis, Blindness, and Deafness.

Most of you will not have worked in a job bringing you into contact with disability on a daily basis. And even those of you who have personal experience of your own disability, or that of a child, sibling, or parent, may well not have ever encountered those with ‘extreme’ disabilities. But over the last 20 years, we have all seen a greatly increased awareness and understanding around the whole issue. The Paralympics, injured soldiers returning from foreign wars, and disabled people working as presenters on TV shows and news programmes; as well as those actively campaigning for better access to buildings and transport.

Attitudes are changing, but there is still a long way to go yet.

What I learned during those 22 years was remarkable. With almost no exceptions, all those people stayed cheerful. Many were in fact much happier than I was, and they coped so admirably with things I could hardly imagine. They had no demands, few requests, and inspired me with their determination to live the best lives they could.