Fake Versus Fact

The trouble with keyboard warriors…

It’s been a strange few days on Twitter both personally and professionally. There are many, many pros to social media, but we are all too well aware of the cons too.

In my working life as a journalist and a columnist, I have been used to sharing my opinions in newspapers and on television. For that reason, I understand the importance of facts, and being able to evidence what I say. When I worked as an executive editor at the Daily Mail it was my job every Friday to liaise with our lawyers with regards to big Saturday news investigations. I had to check with reporters and their sources that we could stand up everything we were publishing should a legal action be made. I loved this job as I’m a bit of a legal geek — I was also a court reporter for two years when I started out in journalism.

People like to say that everything in newspapers is rubbish but if you’ve ever spent a few hours with newspaper lawyers or nose deep in McNae’s Law for Journalists you will know that what the public are told is just the tip of the iceberg of what they really should know.

Sadly, those who are simply ‘keyboard warriors’ don’t understand that you can’t just write what you want and it becomes truth. I find this so strange, that, for example, people I have never met will tell me that my own abuse did not happen because the perpetrator of that crime said so. That they know better than me what happened to my own skin and bones. The courage of their conviction is just so odd. Wouldn’t it be nice if men who were guilty of domestic abuse just threw their hands up and said: “it’s a fair cop.” Doesn’t happen, ask the police, and so here we are.

Likewise, I saw my friend Wendy Mitchell was targeted yesterday. We have written in her latest book about the professionals who take to Twitter, having never met Wendy and her friends, and question their diagnoses simply because it doesn’t fit with their idea of what a person living with dementia should look like. They would prefer Wendy confined to a hospital bed rather than out and about in the world showing that dementia has a beginning and a middle and an end, and so much life to be lived in between.

It is extremely hurtful to Wendy to have her diagnosis questioned, especially as it was hard enough to accept the reality of it in the first place. Yes, everyone is entitled to their own opinion, they can question how someone like Wendy is able to live so well with dementia, but how do they make the leap and turn that into an accusation that she doesn’t really have dementia, or that she is wilfully misleading people by showing a more positive side? People baffle me.

“People who claim to have dementia” — awful language

I always describe Wendy as a swan, gliding on the surface, yet I can see her legs frantically paddling underneath the water, I know just what it takes out of her to try and live as well as she is able.

How could some professor, who has never even met her or had access to her medical records, suggest that because she can achieve all that she does, she does not have dementia? I wonder if that’s how he diagnoses all his patients, on Twitter?

There’s a lot to be said for that old adage, if you haven’t got anything nice to say…

But then Twitter has made everyone think that they are a columnist, yet they don’t understand the intricacies of language, they don’t understand that words are chosen for a particular reason, that reason being that they would stand up in a court of law in my case. Perhaps that’s why they’re not the ones paid by newspapers to write columns.

Keyboard warriors are really just that, people looking for a fight, even if that means they defend the most grotesque of behaviours, that they find themselves on the side of men who abuse women.

It seems as good a day as ever to share with you an extract from Wendy’s new book What I Wish People Knew About Dementia, in which she tackles how hurtful tweets from professionals like the one I’ve shared above are.

People need to remember there are real humans behind these avatars, humans who have lived through very painful experiences. Why would you ever want to be a person who adds to that pain?

On Facing Criticism

My blog, Which Me Am I Today?, attracts visitors from all over the world. I have more than 4,000 regular visitors from places as far-flung as Australia, South Korea, Russia, Mexico and Myanmar. 

It started off simply as my memory, a way of remembering what I did each day, and it still is. I was lucky that I foresaw the importance of keeping a record of my memories when living with a disease that would steal them from me as I slept. But as I learned more about my disease, I realised that there was another meaning to my blog: it was a place to share ideas and information. As people started following me and commenting, I saw the need and desperation for this very same information, and how grateful people were to receive it: 

‘Wendy, let me start by saying that I look forward to your posts on a daily basis. I think my mum has the beginning of dementia, but unlike you she won’t go for a memory test. I want to understand what it is like to have dementia and some of the things you have said I have already been able to use with my mum.  Please keep writing these blogs – they are both comforting and inspiration.’

‘Thank you, Wendy. I feel stronger and more informed. My husband has just been diagnosed with cognitive impairment and I feel I know a little more about the disease now. It’s very hard both for the patient and for the carer.’

‘Wendy, my dad and both brothers all had dementia. However, my lovely husband and I have talked about what you have written and I feel less afraid now for the future should either of us be diagnosed. You don’t make light of dementia, but give sound principles for survival and even moments of joy.’

‘My husband has advanced Alzheimer’s and reading about your journey is so helpful in understanding the progression of this disease.’

When spoken language started to fail me, I found that writing my blog was an escape from the roadblocks in my mind. For some reason, the frustration with words didn’t exist between my mind and the page. Here, at my keyboard, I didn’t stumble in my search for a phrase; somehow the process of my fingers dancing across the keys meant the words came more fluently. There was a time early on when I had not typed for a few days. I thought this respite would be a welcome break for my hands, but when I returned to the keyboard, my fingers no longer knew what to do with themselves. I stared at the blank screen and then tried typing – nothing I pressed made sense. Letters appeared, but not in any order. I was terrified that I had lost this ability of mine, the one that always cut through the fog, and from that day on I have never let a single day go by without typing again. Typing has become my escape from dementia; a part of my day when I look at the screen and see normality staring back at me. It’s a daily freedom that overrides my ailing brain, as if my grey matter is taking scenic country lanes to avoid the traffic jams on major roads. The hesitant verbal me can feel frustrating, but the typing me feels calm, fluent and closer to my thoughts and feelings. If I didn’t have that ability to type, I’d be lost, caught up in the hesitancy and inability to express myself. 

I understand that it must come as a surprise to some people who read my blog to see me in person if I am not reading from a pre-prepared script. They are probably expecting someone far more eloquent to who I am in the flesh. There are also those who think that people like me – dementia activists, if you like – are giving a false impression of what this disease really represents. Some eminent names have gone so far on social media to cast their doubts on our diagnoses, and their abuse can be hurtful and devastating to our confidence. Anyone knows that once you put your head above the parapet to speak about a topic, you are opening yourself up to a certain amount of criticism. I remember one of the first events I attended, where a small group of people sat around a table discussing dementia and what it meant for them. Those days were the early ones of my own diagnosis, and I could perhaps speak with more eloquence than I can now. But as we went around the table and I had finished saying whatever it was that I wanted to say, another man piped up that his own mother had ‘real dementia’ and looked at me as if I were in some way faking it – forgetting, as people tend to do, that this disease has a beginning and a middle, as well as an end. 

I have faced a lot of criticism like this over the years since my diagnosis. It still hurts me on weak days and I feel like I just want to hide away this ‘typing me’, to take it off and give the critics what they want. Soon, though, their comments fade into insignificance, overridden by my love of – and need for – typing. 

People fail to take into account just what it takes out of me to push myself to try. At talks, people have often said, ‘It’s all right for you,’ when they see how I can communicate sitting up there on the stage, but what they won’t see is the banging headache that might hang around for days afterwards simply because of the exertion of attending that event, or all the planning that goes into arriving there in the first place. They seem to think I just appear, but in reality my planning starts weeks in advance: plotting my route, printing out images of landmarks I might pass on my way so that it will feel more familiar when I get there. People simply don’t consider the energy it takes to arrive in front of them. They don’t see me curled up in bed the next day, my head unable to even gauge even which day of the week it is, simply because I have exhausted myself. But what choice do I have? To stay at home and not speak out at all? Would that make people feel better? Would they prefer I left it to the ‘experts’ to talk about this disease that wreaks havoc in my brain, rather than hear it from me? 

It is these very same ‘experts’ that question whether our initial diagnosis was correct if we do not follow the traditional trajectory of this disease. I remember one friend being so affected by the doubt and hurtful remarks that she never went on Twitter again. Another friend even went back to her consultant and asked for a second opinion, so bullied was she on social media, that she wondered if her own brain was playing tricks on her. Both NHS resources and her own emotional energy were wasted in this exercise, which of course only produced the same result. I haven’t allowed myself to be bullied into that position. It was tragic enough the first time around – why should I go through it again just to satisfy someone else’s curiosity and disbelief? But I know being able to type and write often works against me, as it gives people a warped perception of my life. Maybe, in its own way, this is a gift from dementia, and considering that this disease grants so few of them, I will not let it slip. Often I am just as astounded by the dance my fingers make across the keyboard and the sentences that they produce as anyone else. There is little – if any – research in this area to explain why this part of my brain still functions when so much is failing. No one is able to give me an explanation.

Perhaps if professionals concentrated more on what we can do from the start, our lives would be so much more hopeful from the point of diagnosis. Professionals often see people in the later stages and so find it difficult to understand people in the early stages. Many misjudge us because of this lack of knowledge, which can lead them to doubt our diagnosis. We often say: ‘Live in our shoes for twenty-four hours and you may change your mind about questioning it.’ Yet people can’t do that. They will never see what our real lives are like, our day-to-day life with dementia, but while I’m still able to, I’ll continue to write about it. 

• Wendy’s book is currently half price on amazon and you can buy it here