Wednesday 3 June 2015

No. 190 'That poster`


This poster is part of this year`s MND awareness campaign. the person in the poster, Michael, has MND .

When I first saw this poster I didn't initially perceive the 'Karma' aspect of it until it was pointed out. I quickly learned that many were offended by it both those with MND and those without. They felt it was giving out the message that people were to blame for getting MND.

The MND association and Michael have said this was not was intended, more to point out that MND can affect anyone at any time. I believe Michael even used the term 'Karma' in a joking way as a reaction to his diagnosis.

I can totally relate to this, when Chris was first diagnosed he went in to a deep depression, partly because of the diagnosis, but mainly because he felt he must have done something to cause it. In his case, as a farmer he was personally responsible for the spraying on the farm, he felt he must have done something wrong. He would spend hours going over and over his techniques. The guilt he carried and felt was driving him insane on top of having to deal with the MND diagnosis.

It was only when he shared his fears with the medical team that were looking after him that he started to feel reassured that it was not his fault. He was told that no one knows why people get MND, it does seem to appear to affect people more in an active lifestyle like in farming, sports and the military, but there are many who get it who don't fit into any of those categories so it really is true for now that no one knows why. The most recent thoughts are that there needs to be 6 or 7 things to come together to fire up MND, one possibly being a persons genetics and there is so much research going on into this aspect at the moment.

There certainly is no 'Karma' involved and it is a shame that this well meaning poster, taken out of context, has been interpreted that way. As I said before, it has upset many people with MND and without directly and many more so from the misinformed comments on social media by those who have barely heard of MND, let alone what it does to someone. Social media is always a double edged sword, we use it as I do to share MND awareness etc, but it can also very quickly fire up ignorance among some who in turn feed the trolls of this world who have a field day. But,.... we do live in a free world with freedom of speech and from time to time this kind of situation will arise. There are always those who wish to spill bile on any subject you care to think of. 

We all knee jerk react sometimes, myself included and watching TV debates this morning about this matter you realise that some people are still ignorant about MND and what the Ice Bucket Challenge achieved. £7million may seem nothing to some other larger charities, but to the MNDA it was mind blowing and it is funding that genetic research right this minute.

Will this damage this years campaign? Who knows, it has certainly got people talking again even if not quite for the right reasons. The fact is people like us will be living with MND for the rest of our lives, not for just one month of the year and not just while our loved ones who have it are still with us, but for ever. I don't think we can ever get over watching someone we love die such a cruel death. 

So I guess we must move on from the negativity surrounding this campaign, in hind sight the wording could have been better, but the genie is out of the bottle with that one now and the backlash must run it's course. We will carry on with our life with MND as I am sure everyone else in the same position will and from my own point of view making the most of each day with Chris. I will still keep trying to educate those who know little about it with my blog and also continue to spread MND awareness in the process.

We don' t need to add anger and bitterness to our already challenging lives. The trolls will move on to something else, we cannot control their ignorance anymore than we can stop MND.

I shall put this behind me and focus on what really matters, my husband and my family.