Here’s Ed, though I like to call him “Eddie”.
He faces more than most of us can imagine.
The cerebral palsy has brought with it a life of immense difficulty.
Eddie turns 40 soon, and has already surpassed the life expectation of what most doctors gave him as a child.
He lives on, fights on, and still has much to do, including lobbying harder than ever for the rights of the disabled.
The truth is, when you are disabled, you have to fight like hell for things the abled take for granted.
The disabled are born into a world not built for them, which often makes them invisible.
And so they must shout louder to have their needs and rights met.
I say, let’s help Eddie and others shout as loud as they can. For they have more hardship to face than most.
Eddie is entirely dependent on lifelong care, yet manages his own care and support needs.
Not only that, he lives on his own – independent in mind, heart and spirit to the end – even though his body protests and demands dependency, which Eddie will not give it.
There’s a quiet but determined “fuck you”, which resounds from him whenever his body demands that he relent, throw-in-the-towel, give up.
His treatment for his condition is relentless and never-ending, such is its severity.
Eddie’s had more surgical operations than you can count, pills than you can pop, physiotherapy than can be administered, and assistive devices than can be accommodated.
Alongside this, he also battles a plethora of many other ghastly symptoms, including but not limited to, spasms increasing in intensity and frequency, consistent physical pain, severe sleep deprivation, difficulty in swallowing, vomiting and retching, blurred vision, and clinical depression that he aptly describes as “an unruly and defective washing machine of rumination.”
But still, Eddie keeps on keeping on.
This captures him well, this expression, “keeps on keeping on”, as there’s a formidable conviction and determination in him, to live his life to the fullest in spite of all he faces.
There’s a stubborn and proud Italian lingering there, “Todino” is his surname, and he surely would have made a fearsome gangster, were it not for his courage and faith that the majority of gangsters lack, despite their apparent machismo.
He’s a big-hearted fella, who loves banter and hugs – “I love a good hug, me,” he says – and will try almost anything, in spite of his condition, this even extending to cold water swimming.
According to Eddie, I’ve made it to number three on his “good hugger” list.
Now there’s something to aspire to, to hit the Todino top spot.
This big and committed heart he offered me the other day, in the midst of facing an evermore serious prognosis, and an NHS all but giving up on him and recommending palliative care.
After my visit, he left me the most extraordinary voice message, one of those I shall never forget, perfectly attuned to what I was battling inside, offering the right kind of love and support, from a place of real witnessing.
He finished off by saying, “Please give yourself a break, please love yourself… and if you don’t love yourself, then listen to this message over and over until you do.”
He might be a determined disability advocate, but he’s my advocate too, when I need it.
Look out for more posts to come from me about Eddie, as we’ve all got to help him raise the roof, make trouble, piss some people off, and fight for the disabled.