aspiration

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.

Rossnowlagh, April 13

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.

view from caravan

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.

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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.

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#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.

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12 thoughts on “aspiration”

  1. Trying again. Lovely post, Speccy. I feel better just for the reading of it. I am steeling myself to call the nursing home. The latest email again ignores questions I have asked and shows staff are ignoring our instructions. I believe my mother may be down to her last few weeks. Maybe she too will be dreaming of lying on a beach under Irish skies in spring sunshine with her soul and spirit soaring free. I hope so.

    1. You can do anything, Isobel! Steel yourself and say your bit. Your mum will do what she needs to do in her own time. You’re looking after her well, but I know how the distance can add to the miscommunication. Look after yourself too!

  2. That’s so true that being somewhere calm and peaceful and idyllic makes you aspire to all sorts of possibilities in life. Good that Girl1 is both relaxing and defining herself.

    Any GP who says “I’ve never heard of it- look it up on the internet” is a disgrace. I can’t imagine my GP ever saying that.

    And I love the description of the castle with all its contemporary extras. But haven’t you forgotten the twice-daily Castle Experience? And the Castle Bistro?

    1. Unfortunately Nick, it happens. Specifically, it happened to my mum and I, and I know of others. I complained to the practice, but didn’t know at the time that I could have complained to ‘higher authorities’. By the time I found that out, we were so busy with the day to day-ness that we didn’t bother- I do keep talking about it though 🙂

      I’m amazed my 2 missed an opportunity to build in a cafe!

  3. Mulling this one over carefully, as there seems to be a very profound tug coming from with in it. A calling, not a howl, that both stirs and provokes, whose implications far reaching. I’ll be back latter once it all sinks in. Good shtufffs!

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