Hello and Welcome to this Blog about how José and I are learning to conquer Tetraplegia (paralysis of all four limbs). Following José'...

Tuesday, 24 May 2016

My Eulogy - 23rd May 2016

“When I say I love you, I don’t say it out of habit or to make conversation;
“When I say I love you it is to remind you that you are the best thing that ever happened to me.”

This anonymous quote was displayed in the registry office when I registered José’s death. And if ever there could’ve been a message from José then this was it.
When José was in intensive care on a ventilator and unable to speak we ‘invented’ a limited language of winks, nods and shakes. The most important was “I Love You”. And we kept using this when he came home. We could use it when we were in the company of carers or visitors, we could use it when we were getting good or bad news from specialists, and we could use it in place of a cuddle on the sofa. And believe me José could put more emotion in to that wink of an eye than those three words alone contain.

When I first met José he was a bit of an enigma to me. He was popular yet shy. He worked in a male dominated industry, liked my motorbike, and was very determined on the climbing wall but he also enjoyed wine, opera and reading the new scientist magazine. I was training for a 10k and he offered to coach me. He told me he was running a half marathon that weekend, I asked for what charity he was doing it, and he told me it was just for fun. I’d never met anyone who ran half marathons for fun before.

Thank you to everyone who has shared memories with me over the last month. There are some definite themes coming through:

He had a wicked sense of humour; tell that to the student nurse in intensive care, who, just a week or so after José’s accident, tripped over a cable, when she picked up the loose end and asked if it was important – she saw José limp on his pillow pretending to be dead.

He was a true gentleman; he certainly was a stickler for good manners and tradition. When he proposed to me it was in Florence, a city where we both have family connections (and where coincidently the world cycling road race championships were being held at the time of our visit). He proposed at the top of the Duomo, we had just climbed up countless steps and frankly I just wanted a sit down, he was taking pictures all the way round. He wanted one more picture, back round the other side, I needed to stand just so and then I noticed he was down on one knee and asking, with my Dad’s permission, “Katie, will you do me the honour of becoming my wife?”

He had a legendary appetite; anyone who has been away with José will recognise his need to consume mountains of muesli several times a day, and also his sudden alertness to the mention of the word ‘sandwiches’. He loved to cook, a joy he had recently rediscovered with support from his carer. I remember the first meal he cooked me, he got a bit flustered, when I arrived at his apartment I found him with a soggy mess in one hand, and a peeler in the other having confused the words potato and tomato.

I didn’t know José for nearly as long as many of you here today, and I certainly don’t need to tell any of you how amazing he was. We had less than three years together before his accident but we made some incredible memories in that time. We had cycling holidays in Devon, Somerset and Tuscany; we climbed in Portland, Wales and Cheddar; we saw seals in Norfolk, the northern lights in Iceland, and orang-utans in Borneo; we stayed in a shepherds hut, a rainforest and a Moroccan riad; we took mopeds around Rhodes, traversed the world’s highest via ferrata in Malaysia, and experienced the spring cycling classic, Ghent to Welvegem in VIP style.

He ensured a very memorable wedding night. A night when at around 4am I had to call down to the hotel bar and ask them to send up my new husband. Then 20 minutes later I had to call down to the hotel bar and ask them to send up another man, because my husband had slipped in the shower and was now lying in the bath with his legs flaying like an upturned beetle whilst an unstoppable torrent of water shot out across his head from the broken shower pipe.

José’s accident just a year after our first anniversary was an incredible shock. Our action man – broken. His list of injuries read something like this:
Skull – cracked
Vertebral arteries – dissected
C1 Vertebrae – smashed
C2, C3, C4, C5, C6, C7 vertebrae – fractured
T1 vertebrae – fractured
Left shoulder – fractured
Associated soft tissue– damaged
Spinal Cord fluid – disrupted
Spinal Cord C2 to C6 - crushed

The doctors prepared us for the worst, they hadn’t seen this level of injury before on anything other than an autopsy. But José was strong and very fit, he was conscious and breathing when they admitted in. And as each hour and day passed his chances of survival became greater. I don’t know how José got through those early days – but I know that if he could have done a deal with a higher power or a guardian angel he would have asked for time to say good bye. And it truly was a miracle that we got that time.

This last year has been hard. Life has been as far from normal as it has been possible to get but José was nothing but determined to live as normally as possible. He wanted to breathe and to eat. He accepted he wouldn’t walk, use his arms or regain feeling. But he still wanted to get out and do the things he used to enjoy. He went to the theatre, galleries and took the dog for a walk. He met friends in pubs, cafes and restaurants. We had had a week away in Derbyshire and days out all over the south east. That cheeky humour was clearly evident whenever I asked something like “there’s a choice of cafe’s, one at the top of the hill and one by the car park. Which would you like?...” . I have never been so fit.

He started looking at swimming, powerchair football and neuro physio. He could use a computer with his eyes and was making the most of it. At the time of his death he was researching hotels with hoists and adapted beds we could share. We were excited (and very nervous) about moving to a bungalow and starting a family.

Our plans for the future weren’t to be fulfilled. But José has taught me so much over this last year that we definitely have a future together. He faced every challenge with dignity and with determination. He was never angry about his accident nor embarrassed about his condition, about being spoon fed or drinking through a straw. He was grateful not to be in pain and to have had the chance to live independently for many years. He remained patient and polite, despite constant frustrations. Rather than complain José was more likely to apologise for the effect his paralysis had had on others, it is testament to his natural concern for others that he felt he was letting people down by not living up to their hopes that he would recover. José was incredible. José-Antonio Barretta IS an inspiration.

I truly believe that meeting and loving José is the best thing that ever happened to me.

I have a charm bracelet on which is a charm for all the important people in my life. José chose to be represented by musical notes because he would play a game with me where he’d ask “who’s this?” to every song on the radio. The Carpenters was one of the few I always got right.

Carpenters - Yesterday Once More

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