My blog is a year old this month, during this time I’ve been (over!?)sharing my life with you and taken you behind the scenes of my day-to-day reality. The feedback has been wonderful; thanks to everyone who left lovely comments.
I’ve gotten so much out of writing the blog; It has given me a sense of purpose and focus again and proven to be cathartic – dwelling on my life for the blog has helped me come to terms with my lot.
In the comfy surroundings of my kitchen, blogging away on my Eye Gaze, I’m doing my bit to raise awareness of this cruel disease. But last month, I stepped out of my comfort zone and was part of an awareness campaign that changed me forever!
A pal of mine who works in my son’s school approached me about doing an awareness campaign in the school. She suggested getting the children to do a ‘Silence’ to highlight the fact that most people with MND/ALS lose the ability to talk. She asked me to come and speak to the students. My Eye Gaze is so slow and unsociable that I didn’t have the confidence to do a presentation. The old me would have done it but the new and dis-improved me just didn’t feel able. As a compromise I offered to do a video.
I needed someone talented and professional to shoot the video; cue my younger sister. I then needed some giddy kids to laugh at my jokes; cue my son and his adorable friend. An interviewer; my pal who got me into this. And a couple of extras; my husband, brother-in-law and our dog.
I’m acutely aware that cocooned in my high-tech equipment I can appear intimidating. I continually use humour as a crutch for dealing with my MND – at times it’s a thin line between laughing and crying but I try to choose laughter as crying always ruins my make up! With this in mind, and with my knowledge of what makes an eight-year-old boy tick, I knew what direction I wanted the video to take. I was a little apprehensive about how the video would be received. We all hate seeing and hearing ourselves on camera but it was especially hard for me to watch a severely-disabled version of myself. It was probably the first time I had seen myself on video with MND and even I was surprised by my deterioration.
There are 420 pupils in 16 classes in the school. Over the course of the week, my son, his friend and my pal who works in the school went around all of them to present the video and give a demonstration of the Eye Gaze. What happened next surprised us; the students all LOVED the video; the younger ones enjoyed the wheelchair shenanigans whereas the older ones were fascinated by the Eye Gaze. Another wonderful thing that happened was that my son stood up, off his own bat, and had no problem answering the barrage of questions that naturally followed.
After the first day I began receiving lovely emails from the teachers telling me how much the students enjoyed the video. They were also really impressed at how natural my son was at presenting and how he held the students’ attention throughout. His level of knowledge of MND astounded everyone. After five years living with MND we tend not to have deep conversations about it anymore, mainly because – ‘it is what it is’ by now and the progression of the disease is less obvious at this stage, but we’re always open with him. I guess I had never thought about what he knew about the disease.
As the week progressed he came home full of confidence and delighted at his new found fame – everyone in the school knew his name! I was getting a flow of emails daily from teachers with great stories of the reactions from students.
“…one of the kids asked him whether you could sneeze or whether you had to type in the word ‘sneeze’, if you needed to sneeze – his answer was priceless – he just looked at her as if she was bonkers and in a very clear dead-pan voice answered; She’s not a robot you know – of course she can sneeze!”
All classes participated in a ‘Silence’ after seeing the video. Younger students did a short one where older students did an hour! The older classes loved the experience which was another surprise. The teachers organised to do ‘Art’ or play games during the time and many students made cards and drew fantastic pictures for me. I was blown away by the extremely thoughtful and kind wishes sent and even learned a few new jokes. My son was so chuffed bringing home the messages for me. My favourite was; “You are the shine in the sky”. Incredibly cute and sweet.
Needless to say the teachers loved the ‘Silence’ but they really enjoyed watching and listening to how the children processed the entire experience. It brought up subjects that had never been discussed before and gave students an opportunity to ask questions and learn about a topic that is not easy to discuss.
“…the video became a catalyst for a number of really powerful lessons… Teachers were really moved by how the kids started to discuss philosophical issues about the importance of connecting with others, optimism, relationships, human spirit etc. ”
I got to see a video of one of the senior classes discussing the video; it was very moving hearing their empathetic and thoughtful discussions. The teacher then brought things in a slightly different direction to talk about mental health and how I have a ‘glass-half-full’ attitude despite my disability. I was especially moved by this. Some students even mentioned things I had written about in my blog. The class then discussed my favourite quote – ” Kindness is the highest form of wisdom”. It was a special moment to witness the students reflecting on this and I was really impressed how the teacher developed the subject. Another teacher spoke about how every family is different: For various reasons, some families have only one parent at home, while others have a disabled or sick sibling or parent – the point was that every family is different and that’s normal.
We all gained so much from the experience and learned from the students’ positive attitudes. The Principal said, “The debate that this campaign sparked in the school has been really powerful. I think we all (children and adults) debated, reflected and engaged last week and that is what true education is all about. There are times when I feel so proud to be part of DPETNS and this is definitely one of them!”
On a personal level, the experience was incredibly positive on numerous levels. I’m still self-conscience about my disability and constantly worry how MND is impacting my son. Never in my wildest dreams could I have imagined a situation where my son could give talks about MND, was showing off his disabled mum and was famous because of his mum’s dodgy jokes! It was amazing to see him caught up in a whirlwind of positive attitudes about MND and disabilities. By the end of the week I could feel we were closer than ever.
The person who made all this happen was my wonderful friend. When not working and raising her children she is a champion of community, charity and volunteerism. To create such positive attitudes in ALL students around MND and disabilities is an incredible accomplishment AND she also empowered my son to talk openly and with confidence about his home life. Thank you dear friend, you’re an inspiration to us all.
It didn’t end there, on the Friday the Parent/Teacher Association held a hugely successful Cake Sale in aid of the Irish Motor Neurone Disease Association. Students baked their hearts out and were extremely proud of the amount raised.
To view our video click here.