Recently I’ve met some ‘Superstars’, nobody famous, just people who offer their help without being asked.
Since I moved to Lincoln I’ve always had my haircut at the same place. I always get Mark to cut my hair and in the past he noticed my slurry speech and knew when I needed help to remove my coat and put it back on.
On our last visit the other week I had to go for the first time in my wheelchair with George, this was the first time he’d met her so they had a good chat about me, Emily spent the time sat in my wheelchair smiling at me in the mirror. When we were paying he gave us his phone number and said he was happy to come to our house when I couldn’t come out. We didn’t ask he just offered.
Another star that I briefly met was when we were getting a taxi to our phototography exhibition in London. We used the company that my aunt suggested as they were based in the street where she lives. All we asked for was a car that had a big enough boot to put a folded up wheelchair in. When he arrived the driver couldn’t have been any more helpful. Without being asked he helped George with the wheelchair and he helped me get into the car. He lifted my left leg, helped me shuffle along and put my seat belt on, all the time asking if I was okay. He came back at the end of the night and did it all again.
Whilst there we met the Mayor of Lambeth. He told George that she was a star looking after me and our children. He told me that I was strong and being a great person. Even though we knew he was coming we didn’t think that he would buy anything, he did though and that was great.
One person that I did meet that you could call famous due to the attention she receives was Sarah Ezekiel. I got a bit emotional when I saw her enter the room as I’m so proud of what she’s doing and living with MND. It was great to see her and communicate via our tech. She donated a painting which the Mayor won in the auction and she also bought one of my photographs which is now in her home. She posted a picture of it on Facebook located on a wood panelled wall. She bought ‘Through the Round Window’ a picture taken through a porthole on the Cutty Sark of a red phone box. In the picture she posted it looks like the porthole is back on the boat.
I also have some stars in my life that I haven’t even met yet. The social media is a great way to contact with people who are living with MND and also those that are fundraising for the Association. Getting support from these people is amazing and makes me feel so proud of them.
I’m going to meet people this year and when I give up work more people will know about me and see my face. I’ve said before it’s the only way to raise more awareness of this disease. I can’t hide at home as that’s the wrong way to go. I’ll get George to move me around and you’ll see us.