Dear Diary: New Year’s Disillusion​

Last year I wrote at New Year about the new landscape, the knowledge of not knowing if my last breath was indeed my last and the debacle of the pulmonary embolism that wasn’t.

I read there a tone of optimism, a forward-looking idealism and upbeat tenor that has become somewhat inappropriate. The season, like the date, has changed. In the year, of course, things have happened, and it is easy, very very easy, to focus on the negative experiences and the downward twists of life’s journey.

I am not negating the great family who blesses me and support me, the amazing achievements of my wife or my friends, where I have been privileged to have a line in the story of their success. Nor am I writing of the great experiences I have had at concerts, ballet, opera, musicals and watching their successes themselves, it has in that respect been a year of stark contrasts indeed.

The reality is the storms of 2018 broke me, and it is my wife, more than anyone who patiently helped me put the pieces back together and is supporting me as I rebuild very slowly from that.

The year opened with the unfinished hangover of the pulmonary embolism, which was as the year progressed confirmed, and complicated by haemorrhaging at the minor surgery site that kicked it all off. In April I collapsed and before I could be treated for my major heart attack the doctors had to scan my head to rule out bleeding on the brain due to the lower body paralysis also presenting.

By the time I left, I had been treated for a major attack, but because no damage was done it was downgraded to a minor attack and no follow up was required, the scans showed that while I had no bleed I had at some time between the last scans of 17 and these had a stroke but as it was done again no follow up was booked. I was discharged on blood thinners due to the consistency of my presentation with a clotting disorder and that was that.

At home I rested hoping pains would subside, well the chest pain was gone, scans for gallbladder problems have drawn a blank even the internal ultrasound but the pains persist. By July I lost my ability cope completely, feeling left to rot and alone, in extreme pain and appointments being cancelled around me in a cascade I took an overdose.

It did not change much, the “crisis” services ticked boxes but had no idea what to do, however, I did discover the understanding of other people remarkable, and it revealed the true extent of where I was which had not been apparent and so outside the formal the personal subtly changed; and more people started to look past the front and the persona and notice the winces and limps, the pallor and changes as I worked to cover losses of skill, coordination or high pain levels. Life has become a subtle silent dance.

Perhaps, it is no surprise shortly after I was diagnosed with chronic fatigue syndrome, which, in some ways, finally gave me a compass for the new landscape and something to say to people they could understand. A disability that was known, even if largely not really properly understood like most things, at least accepted and not given a blank stare.

Which rambling, leaves a question, 2019?

I am slightly disillusioned, not so long ago I saw this year as a big year for me, big competition affordably close to home, 2 years potentially of solid training, even with 17s set back a solid 18 would have put me right in the mix as I was a domestic class winner last year (and a matching performance would have won the worlds), so I was very optimistic.

Artistically I was finding myself a little plucking up courage more, reading more and I lost all my confidence with the lights out incidents of January, the absences and everything prior the fatigue left me weary, confidence destroyed and largely adrift in every aspect of life, even my personal, solid as it was, in reality, felt confusing and at sea (thats neurological damage for you).

Disillusioned, for sure, backfooted, definitely, down, a good description, out, not quite yet, retired, don’t use the R-word quite so soon, coming back, don’t call it a comeback, I’ve been here for years. Success isn’t owned it’s leased, and the rent is due every day, I have kept up my payments.

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2 comments

    • Thank you. I completely over thought my reply, like your post on new websites and breaking away from wordpress, I hope for my reader to feel a me too moment or a connection to what I experience in some way.

      And, overwhelmingly not to become another internet fake persona,

      Feedback very much appreciated indeed 🙂

      Liked by 1 person

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