The first time Gill Hammond saw her husband fall over was at their son's fifth birthday party in 2017.
"Joe had created this great event in the forest that was all about forest ghosts. He had buried a birthday cake in a plastic box and all children had to find the cake after following many directions. He stood in the middle of all the children and suddenly he fell backwards – like a tree. & # 39;
Six months later, Joe and Gill were in the consulting room of a hospital neurologist.
Gill says: "You could see that the consultant was agitated. He continued to poke Joe & # 39; s back with a pin. It was really painful for Joe, but you could see it was a kind of desperate attempt to be something in his muscles; to be something else. "
Gill Hammond, 42, (pictured with her sons, Jimmy, two and Tom, seven) shares how her world changed after her husband Joe was diagnosed with motor neuron disease
But then came the confirmation: motor neurone disease (MND).
The devastating disease affects nerves in the brain and spinal cord that tell your muscles what to do. This leads to the muscles weakening, stiffening and wasting. It can be an attempt to walk, talk, eat, drink and breathe. MND is always deadly.
"I've just seen Joe crumble," Gill recalls. "I saw him fall when this news came in. He said, "But I have a family."
But news about an end led to a new beginning. Joe continued to write a book, A Short History of Falling, Everything I Observed About Love While While Dying – a powerful and moving memoir of living with and dying of motor neuron disease and what it feels like to leave his wife and young family behind .
This month, critics have called it "stunningly written" and "unforgettable" and compared it to Paul Kalanithi's bestseller when Breath becomes Air.
I meet Gill, 42, in her house, a bungalow on the outskirts of Petersfield, Hants, where she lives with Joe, 50, and their two boys, Tom, seven and Jimmy two.
She is warm, open. It doesn't look like a home for the disabled. It is light filled and open with beautiful wooden floors and large glass doors to the garden. There are discreet details. The lawn is reinforced with hidden plastic crates, so that Joe can take his powered wheelchair into the garden. There is a chair with a hoist by the window. "Unfortunately, Joe cannot use either now," says Gill. He's too weak.
When Joe finished the book in March, he was sitting on a ventilator during the night and had to be fed through a tube. But the family finally felt settled. After many temporary homes, they had recently moved into the bungalow – Joe was able to spend the time he had spent in a beautiful place. But then he got sick with pneumonia and was taken to the hospital with "a knife edge."
Joe, 50, (pictured with his sons) who uses Eye Gaze to communicate, has written a memoir since his diagnosis
"It was really frightening," says Gill. "I thought," This is it and I am not ready. "He deteriorated so quickly, so dramatically after completing the book and moving here. It felt very cruel. & # 39;
Joe was finally fired at the end of May and is now stable. "I'm nervous to say it, but he's in such a good place if someone can be in his situation," she says.
"But he said that if he develops an infection again, he won't go back to the hospital. That is a way in which he can get the disease to some extent under control, but he also does not think that there is much left of him if he went through it again. & # 39;
Joe is looked after in his room next to him by two caretakers. Gill takes me to meet him. It is surrounded by equipment and machines that squeak and buzz. His body is now fragile: he can no longer hold his head up and loses the use of his good arm. Nevertheless, he is a huge presence, still detectable by his undisturbed and smiling eyes.
He & # 39; chats & # 39; with us through Eye Gaze, a computer with which he can talk with his eyes. Each sentence takes a few minutes to complete while Joe & # 39; s eyes scroll across the screen and he selects words to say what he thinks. Gill says: "At first he sounded like Stephen Hawking and I thought:" Oh no! "But luckily they keep improving the technology and now I only hear Joe."
I would take Tom to school, get back in the car and roar with pain, fear and tears
She gently touches his shoulder as we leave. Her way of being with her dying husband is impressive and humble. No false optimism, just uncomplicated honesty, simplicity and warmth.
"I find it very difficult when Joe speaks with his own voice," she admits. "Because of what happened to his vocal cords, the pitch is so high and, of course, that upset him; and sometimes he is sad, and that is what I am struggling with, just that constant feeling of: "Are you okay? What can I do? How can I make this better?" That is always there and that is quite a difficult place to always be to be."
Joe (pictured with Gill in 2010 on their wedding day) has written cards for each of his sons to open on their birthday in the years prior to the age of 21
Joe originally wrote the book for his boys, so as they grew older they would know him when he stopped being there.
His story was picked up by a publisher after Joe had written a newspaper article describing how he was writing cards for his boys to open at their future birthdays.
He had to calculate how many cards he had to accumulate – if there were two years left, how much would he write? The birthday cards are kept in an old shoe box; a card for every year until the boys are 21.
"I think they will give the boys a lot of comfort," says Gill.
The only positive result of Joe & # 39; s terminal condition is that at the end of his life, Joe achieved a dream that had escaped him.
He had always wanted to be a writer and had professional success in writing for theater. But "I wasn't as resilient and resourceful as I was supposed to be," he writes, "and I eventually lost faith." Instead, he focused on a father staying at home. But then came the diagnosis. Joe found his subject: "I think death is so interesting, I wish I had known before," he writes.
But for Gill there have been many losses. She worked at Francis Holland, an independent girls' school in London, where she taught psychology and was also the deputy head of the sixth form.
She was the breadwinner of the family. Now she leads an intense and tiring life at home.
Before the illness Joe (pictured with his sons) would take care of the children, meanwhile Gill was the breadwinner
Until recently, she was the only caretaker of her husband, while also taking care of two young children. She was the person who wiped soils (all three), tied shoelaces, applied creams, administered medication, got her husband up at 4 am and maneuvered him with a cup of tea in his lounger so that he could write the book on his laptop with his good man hand.
"He got up early so he could be available to the boys later," she says. Moreover, she must now do all the things that Joe used to do. For example, cooking.
When Joe describes Gill for the first time in the book, she cooks him dinner. He was 32, she was 24.
They knew each other for a week. She struggles to get the contents out of a can of tuna. He found her face "pushing the can down, the way a person might try to get some stiff ketchup out of a bottle" completely tempting. "I don't know why I'm so bad on that side of things," she says. "There was a period in which Tom was particularly fed up, because he kept saying," I want Dad's # 39; s dad! "I thought they looked identical!"
Even if he packs the boys' bags, Joe is so much better at it, & she continues. "The number of times I have been outside and desperately looking for sunscreen, and I think," If Joe had packed this, the sunscreen would be there. "
"She will be both of us," Joe notes in the book. This also means wrestling.
"Tom likes to jump and play and fight, and boy, it's really hard, and something that Joe would do so naturally and easily. I almost had a pair of black eyes with an elbow, but it's OK, I can handle it. I just wonder what it will be like when Tom and Jimmy grow up. & # 39;
Joe has described the changes in his body in detail in a memoir, the book was originally written for his children instead of for publication
Joe cried five days after receiving the news of his diagnosis and then felt calmer.
"This time of my life is strangely the most satisfied and happy period of my life," he writes.
Does she feel the same? "It's very strange because, if there was one thing I could change, it would be to take Joe's motor neuron disease away. But I think I live more, & she says. "The lows are really low and the highs are high and everything is sharper and more realistic. Relationships are more real. There is no time for all c ** p. & # 39;
She says the book was never intended for publication. "It was something he wanted to do for the boys, so I left it to him. Only when we realized that it would be published did he say, "Look, I think you can read this better."
Joe talks about the humiliations of changes to his body: hoists; excretion management; withered genitals; food that cannot be swallowed.
Did you feel protective against him? "It's the truth and I think it's better to be real," says Gill. "I don't want us to present a Facebook version of Death. I think his vulnerability is unique, especially with a man. I am so proud of him and happy people can see what an incredible man he is.
"Not really," she corrects herself. "I am glad he can see what an incredible man he is, because that has been a struggle for him and has always been so painful for me that he did not recognize what he is capable of. I always knew that Joe is a talented writer. & # 39;
Gill (photo) tells Joe to meet at a teacher training course at Oxford Brookes University, she says he didn't look in place among the room full of women
Gill was born in Suffolk, the third and late child in a family that fell apart. Her father was a builder; her mother receptionist from a doctor. She was conceived as & # 39; the hope that marriage would hold together & # 39 ;. Her brother is ten years older, her sister, 11.
Her parents divorced when Gill was eight. She went to live with her mother. "I was a house key, came home, ate microchips, chocolate, watched TV."
"I was really a mess. The only thing I knew was that I wanted to get out. & # 39;
After A-levels, which she approached at & # 39; a cursory way – I showed up & # 39 ;, she ran away to New Zealand, where she worked on a fruit and vegetable stall and then on a garlic farm.
She returned to the UK at the age of 21 and stayed with a friend who had recently started at Warwick University. She worked hard in a wine bar and, after encouraging friends, applied to study psychology at Sheffield University. She was, she says, a conscientious student. "That's probably what I always wanted to be."
But she took the attitude of wanting to escape and, after graduating, decided to become a teacher so that she could work abroad. She met Joe during a teacher training course at Oxford Brookes University.
"I showed up in this room and sat down and it was filled with women. Then Joe came through the door and looked completely out of place. He was wearing glasses with a leather bag over his shoulder and I knew he was someone I wanted to know. & # 39;
Joe had won a place as an adult student to read English literature at Cambridge University, despite insufficient O-levels (not even O-level English).
Joe (pictured with his sons) encouraged Gill to continue her career and built her self-esteem, describing him as her & # 39; anchor & # 39;
His childhood was dysfunctional and not arranged remotely, with his parents apart when he was young. Joe was unhappy, lonely and characterized as "a bit of a problem."
Gill says: "Like me, he had no idea about education and blew it all up. I was nailed by him. Then we spent every moment together. We really clicked. & # 39;
She describes Joe as her & # 39; anchor & # 39 ;, the person who encouraged her career, built her self-esteem, and said she didn't have to put so much of herself into other people. "Joe always said," Keep some energy for yourself because you'll be exhausted. "
As a few, they flourished. She started teaching; he worked with excluded children and then in the care system. They bought a magical apartment on the top floor of a Victorian building in Crystal Palace, overlooking London below them.
The highlights are high. Everything is sharper. Relationships are more real.
"When we decided to get married (in 2010), I thought my wedding day would be a beautiful day. But looking around at all our friends, I was blown away by the fact that they had come to see us getting married and being part of that party. It really put a switch in my head: these people care about us. & # 39;
But she maintained a sense of adventure, and when children came by, they wanted different experiences for the boys.
When Tom was five and Jimmy just one, they rented out their flat and moved to a house in the mountains of central Portugal.
She was then a teacher at Francis Holland. "They were great. They said, "Take a sabbatical and come back." But we secretly thought, "We can help at the boys' school in Portugal. We can make a difference. We can be together. It will be a fantastic experience for the boys."
Ten days before they left, Joe had a neurological appointment following a referral from the doctor. He went to his doctor because he kept falling. The neurologist said he needed an MRI scan. "We said," We do it in Portugal. "
12 weeks later, Joe was diagnosed with Joe. He was 48, Gill 40.
She says: "I would go down the mountain, take those hairpin bends, bring Tom to school, talk about remote control 4x4s, drop them off, get back in the car and cry. Absolutely roar of pain and fear and tears. & # 39;
Gill (pictured with her children) who says her sons are the greatest blessing, revealed that she devotes one day a week to being alone with Joe
The following spring they moved back to the UK. They marketed their apartment – Joe would not have climbed the stairs – and stayed with Joe's mother in Oxford and then rented a house on a Hampshire farm. But they couldn't sell the flat. The stress of Joe's disease was exacerbated by serious money worries. In the meantime, they also had to find somewhere safe and comfortable for Joe to spend the time he still had.
Friends came in. With a lot of help from those who cared for the family, they could buy and renovate the bungalow.
"This house is the result of people who say: & You need a house. We won't let you fall. We will make sure that you are fine. "That's more than words."
She now has caretakers to help with Joe, but life is still full. "Joe says a disease is a full-time job and it really is. Someone always comes in the door: occupational therapists, district nurses, the doctor, physiotherapists, someone who checks the oxygen and delivers his medication. & # 39;
"The biggest blessing is the boys and, bizarre enough, although it can be ridiculously hard work, that's the way I get out, because they are like that right now and they can be so cheerful and funny.
& # 39; In the evening, after the boys are in bed, she sits with Joe. "I talk to him about what's going on. I also try to get at least one day a week to be with him. We can just listen to the radio together or watch something great; just a sense of normality. & # 39;
At the end of the book, Joe says he will be buried in a forest near where they live.
What makes the book so heartbreaking is that the person we get to know, the loving and humorous husband and father who are so lively on the pages, will soon no longer be there.
"I have many thoughts about what life will be like without him," says Gill. "I hope he will still be with me in a certain way. I have to believe that. & # 39;
A brief history of falling, by Joe Hammond (£ 12.99, 4th Estate) is now out. To support the Motor Neurone Disease Association, visit: mndassociation.org/ get-engagement / donations /
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