Part 8 - Life After University

Henry with Elliot Hulse

Henry has been lucky enough to go on lots of trips connected to his love of body building. He has been to Body Power in Manchester a few times and met all the new and old Mr. Olympia and Mr Universe Body Builders. He has followed an influencer called Elliot Hulse online who is an American strength coach and youtuber. He has been lucky enough to meet him in both London and America. We have tried so hard as a family to make dreams come true for Henry.

In his second year at university, just before Christmas, my mother fell ill. After some blood tests, she was diagnosed with Leukaemia. It was that news I had always dreaded. Again, my world turned upside down. She became very poorly, very quickly, and died the following February.

Anyone who knew my mother was touched by her. She was an artistic creator. She created a wonderful home and family. She created a wonderful garden, food, calligraphy, music, art and so much more. She had the gift to make you feel like the most important person in the world and everyone who met her felt it. Her gravestone reads `loved by all who knew her` and it was true. Over 300 people attended her funeral. She was a young, fit seventy-two-year-old and she was taken too soon. I needed her so much, and she was gone. On the day she died my father gave me a letter that she had written to me before she died. It read:

January 2011

Dearest Listy

It seems we may soon be parted & I grieve to say goodbye to you. We must just look on this as a temporary parting.

You have been a wonderful and caring daughter, and I particularly appreciate all you did for me while I was in hospital, with your gifts and your company.

I am sad not to see how your lovely children develop but I know you will guide them along the right paths.

You have been absolutely wonderful with Henry & his problems, & deserve ten medals. It must all have been a terrific strain. You have a good man in Mark to support you.

My deepest love comes to you, as always.

M

She wrote to all her children. I keep mine inside her bible and I read it every year on my birthday, a birthday I share with her, to keep her memory alive in my mind. Every day I have struggled without her support. A few days before she died, she took my hand and told me that she had given me everything I needed, all the gifts, to carry on without her, and that’s what I’ve done. I know she is still with me, around me, inside me.

Henry on the University of 
East Anglia campus

When Henry finished university, he wanted to stay in Norwich and so, with his live-in carer, they found a perfect little flat in the centre of town. For a few years Henry continued to live with his carer independently. He still went to the gym every day and was busy out and about in his local community. He still went to the UEA Sports Park and was a regular climber on their wall. 

While he was still living in Norwich I went on a trip to Turkey with Mark and Saskia. As soon as I left the country Henry became unwell. He had sickness and diarrhoea which continued until he was admitted to hospital. I spent the whole week waiting to catch my flight home. The minute I landed I drove up to the hospital. He had lost a lot of weight and a lot of function. He could no longer sit up as his core muscles had deteriorated. This was the darkest point for Henry. He was an in-patient for a month. Far too long for him to be lying in a bed doing nothing. They had stabilized the sickness and diarrhoea but now they needed to try and rehabilitate him back to his baseline. A baseline that would be hard to get back to. I took a month off work and travelled every day to the hospital.

Henry with Edward and Saskia

On one of my visits, on my way up in the car I took a call from one of the Social Workers who worked in the hospital and had been involved in Henry’s care. She told me that she had just been on the ward and had just had a worrying conversation with him. Henry had told her that the 24-hour live-in care had been marinating raw meat in soy sauce and feeding it to him, because he thought it cooked it! And this is what had caused the Campylobacter. Henry was in hospital through sheer ignorance and negligence. The care company were sacked. The main reason that Henry was bed blocking for so long was because a new care package was being organised. We needed new equipment for his flat because he had lost so much independence. And the most difficult and painful result was that Henry lost his eyesight and is now registered blind. That is something that I have never been able to come to terms with. On top of all his other problems, he lost his eyesight, another huge disability. I rang the care company and asked to see the carers Food Hygiene certificate. I never received the certificate; I never received an apology. When Henry was finally discharged, I contacted the hospital and requested Henry’s medical notes from his hospital admission. I wanted to find someone to blame for what had happened. I read those notes from beginning to end, front to back, back to front. There was no record of the conversation between Henry and the Social Worker or me and the Social Worker regarding the statement Henry made about the carer feeding him raw chicken. So, Henry lost his sight, and no one took accountability, blame or responsibility.