Lying on a beach on the west coast of Ireland in April, I can believe that anything is possible.
There is snow on the mountains and my many layers are accessorised with a scarf and wellies, but I have the shades on and the sun is warming.
Jake is growling at other four legged things. The girls have designed and built a castle estate with moat, car park, ticket office, shell garden and activity net. (Spurs Fan may have been drafted in to do the heavy work.) There has been splashing, paddling, running about, and much exploring. We’d all like to own a caravan here, but then it would be an expense rather than a retreat, so we’ll stay on top of the hill and travel for another while.
Girl1, about to be 12, has a lot of working out to do. She’s conciously trying out ways of being, new behaviours, to see if they feel like herself, and if they fall within the boundaries of what’s acceptable. Until she gets on a beach, and relaxes into the emptiness. She is nurtured by the openness, the endless possibility. She feels the world lift off her shoulders, the wind creeping round the creases of her brain, spring cleaning. She runs and plays and returns her mind to the default setting.
Here and now I believe we can do anything. I believe we can find ways of supporting families and medical professionals when they encounter a rare disease.
I believe we can work together so that specialists no longer send people away with a diagnosis of extremelyraregobbledeygookitis but without ongoing support. We can make sure that GPs don’t consider “I’ve never heard of it- look it up on the internet” to be an appropriate response to such a diagnosis. I believe that people living with rare disease, families, health professionals, clinicians and commissioners can work together to improve length and quality of life.
We will take steps backwards and wrong turns. We may, like Jake rediscovering that seawater is not as refreshing as it looks, keep needing to learn the same lessons, but we will get there.
I was lying on a Donegal beach in April. I can do anything.
#hawmc day 5 (who’s checking the dates?) “If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue.