Some years later I took part in a drug trial specifically for Primary Progressive MS. I have often described this drug as a life saver with the many benefits it brought me at the time . As well as the physical benefits, the mental changes of reclaiming lost abilities were immense. Once more the world was mine to conquer . Each day offered new possibilities. The urge to push the boundaries grew as each challenge was successful. Unfortunately that is where the fairy tale ends.
The company decided to stop the trial and all those who benefited from it would now have to pay to continue receiving it as the HSE refused to fund it . This for me and many more who benefited from it was far too costly. MS Ireland launched a media campaign together with our help to have the drug funded eventually we were successful. However, the stress of fighting the campaign had taken its tole and for me a lot of the great things it originally offered never returned.
As I write this piece and painfully recall the events I think that may be partly due to me harbouring a deep distrust in the powers that be who can at the stroke of a pen have my dreams shattered beyond repair. Most of my working life has been dedicated to improving the quality of life of people with learning and associated disabilities . As a firm believer in the value of art for people with disabilities I know at first hand what it can offer people. To improve their fine and gross motor skills build their self esteem, improve decision making skills and much more . As a designer and facilitator of many projects I have been privileged to witness participants blossom and grow in all areas of their personal lives as a result of taking part in such projects and exhibiting their work to the public afterwards.
On a personal level I have studied art to broaden the skills I could offer the people I worked with. Now as a person with a disability myself I am constantly turning to art to answer many of the challenges MS presents me with. When Covid reached our shores I decided to start painting the experiences I was going through ,words seem to flow as well as the paint to describe what was happening. During a casual conversation with Thomas McCarthy, Marketing and Communications with MS Ireland the possibility of putting my work on their social media outlets arose. I was amazed with the reaction and the comments which followed. I have continued to post weekly since and am delighted so many people derive comfort and pleasure from my work.
'Pouring Out My Troubles' is the title of my piece for the exhibition. I created it because I felt I and many more of my fellow sufferers are very slow to speak out about how we are really impacted by the MS journey we are on and we need to be more open and honest with ourselves and those around us. What better way is there than the cup of tea and a chat? I see this borne out to be true each week we have our 'Time to Chat' meetings on zoom.