Motor neurone disease has robbed me of what I value most – my voice

"An entire room full of people with nothing to do but listen to me speak," is how I described my motive for becoming a barrister; even more so as a judge. I must admit the judicial art of keeping one's mouth shut was definitely best described for me as a work in progress – until I lost my speech altogether. What use is a judge who can't shout? What use is a mother who can't nag?

It's no accident I went into the senior branch of the profession. My three favourite activities were talking, drinking and eating … and in that order. So what happens when you lose the ability to do any of that? I haven't gone mad. I haven't lost my mind. I have lost 40kg, though. It turns out Dorothy Parker was wrong. You can be too thin.

For more than 20 years, I have earned my living by means of the spoken word. I started to lose the ability to speak back in February 2012, although of course at the time I didn't know what was happening. It began with a sneaking suspicion on my part that I was slurring the occasional word, particularly when I was smiling. No one else noticed. In fact no one noticed for a very long time – although one friend did say to his wife one night when I rang, "What was wrong with Jo? Was she pissed?"

My speech progressed through the drunken-sounding slurring via virtually unintelligible into silence. From suspicion to silence took just over a year. I was diagnosed with pseudo bulbar palsy, a form of motor neurone disease, 10 months after the onset of symptoms. So now that I am silent when I've spent my life loving the sound of my own voice, how do I manage?

Well. I give thanks for the genius of Steve Jobs most days. Without a tablet, a smartphone, a mini tablet for going out and emails, emails, emails, my life would be hell.

I have also lost about 50 IQ points. Well, that may not be literally the case but it feels that way because that's how I'm treated. My son asked me if I missed work and I replied that I missed the respect. I cannot put into words how much I hate the constantly patronising, moronic twits who tell me to calm down when I was perfectly calm until that point.

Of course it isn't true of everyone. Young shop assistants are great. The girl in Clark's who shouted over to her workmate, "Oh, it's so cool. This customer can't speak so she's using her iPad to tell me what she wants." The assistant in Apple who declared, as I started typing what I needed and why I was typing, that I was "his coolest customer ever" and the girl in Sports Direct (until then my most hated shop) who just treated me as normal. There was a point, when I could still speak, that I sounded as though I was deaf, and so was treated as though I was deaf. I intended to get cards printed saying, "I'm not deaf." "I'm not stupid." and "Tea, milk no sugar."

I'm now, though, a non-person. A stupid person. A person with no point of view worth taking account of. I'm cut off by so many organisations because I can't ring them and they won't let me email. I had a virtual stand-up fight with the practice manager at my GP over their refusal to buy a mobile phone so I could text them. I've had to put third-party authorisations on various accounts.

But why can't I communicate myself by email to tell them what I want and don't want? Why does it have to be done for me. Because I am a stupid, disabled person that's why.

I miss chatting with my children. I miss nagging my children although they'd probably say I do a pretty good impersonation of it. I miss my job. I miss dinner parties. I miss sharing a bottle of wine with a friend. I miss spontaneity. I still can see the late John Diamond standing against a wall with his arms and legs crossed, watching, but not participating in, his then wife, Nigella Lawson's dinner party. It's an image from a documentary from years ago. I wonder why that image stuck with me. It was very powerful, but maybe it was something else for me. A harbinger of doom.

Parties are different. I do find that I sit down and people come to me like I'm a grande dame. It has to be one to one though, so I can type and they can talk and chat. After half a dozen or so I'm shattered.

Putting everything you think, feel and want/need to say through the typed word is tough. I wish there was a way of communicating my thoughts to the outside world. Of course there is; it's speaking.