Note: To all of you reading this who love me, please know I’m writing this from a place of strength, not sadness. I feel sharing this now, after keeping schtum for some years is cathartic for me but also may help others going through their own loss of independence or disability to feel less alone. I hope my frankness is not upsetting but leads to greater connection and understanding. It’s also very important that we get some laughs in…trust me, […]
Rough Drafts- trigger warnings for foul language, tricky themes and other life stuff.
Welcome to your life, There’s no turning back… Tears for Fears: Songs from the Big Chair (1985) So here we are, 35 years on from my original diagnosis of Retinitis Pigmentosa and now moving into the final round of useful vision. How do I see? Imagine a Polaroid photo but one that is very over exposed. Now imagine that it’s been left out in the rain and sun for a few months and – just before you pick it up […]
Getting tight
The clocks have gone back and BAM just like that I am a hedgehog again and all I want to do is hibernate. This year in particular I have really noticed the brain change. Grace and I usually get up at 6ish (very ‘ish’!) She eats and slopes back to bed and I do my chanting meditation and think about ‘stuff’ and what to write and how plan my day. But since the clocks, I am dopey and dizzy and can’t […]
The Hardest Hit!
Hi there! Hope you don’t mind but I have copied the information from the RNIB website about the planned march next week. I went on the first one in London in April and I think it is very important that everyone is aware that the government ‘changes’ to disability benefits are going to directly affect the most vulnerable people in society. Its grotesque especially in the way is is all being done ‘undar the radar’. You may think it doesn’t […]
Night Nighties
Right, that’s it. I have HAD it with nighties. In fact all bloody silly night dresses of all forms; wispy, silky, clinging, spaghetti-strapped, long cotton with pretty embroidery, delicate, immensely irritating bloody nighties. No more! They are just not safe night wear. You see a couple of nights ago, Grace and I were woken by suspicious crashing noises coming from the garden. Grace leaps up and dashes for the back door with me on her tail, desperately flicking on all the lights […]
Please Don’t Adjust Your Sets….
My blog brain is on hiatus but …It Will Be Back! I promise. I apologise for lack of clown in the very bad replica BBC test card but Grace had a hissy fit and legged it into the garden when I said she had to wear a hat. Hope you are all well. Tanvi x
Fighting Talk
I am gritting my teeth. Sweat is beading under my fringe and my legs are twisted around each other. My friend C, on the opposite chair, is equally scrunched up. We are listening to a CD ….a workshop on Non Violent Communication. It is fascinating and for me it much of it makes very good sense BUT the man’s voice, a painfully slow, American drone of a drawl, is driving us nuts. I am aware of the irony, the fact […]
St Iving Off!
‘What’s that?’ There is a most remarkable sound coming out of Daisy’s rucksack. ‘Flamingos.’ says Daisy unperturbed. ‘Oh,’ , I say blinking. ‘Noisy aren’t they.’ ‘I had seagulls before’, says Daisy ‘but that made things a bit difficult at the seaside.’. I can see her point. We are in St Ives in Cornwall and the sky is tattered with gulls. Having their cry as a ringtone on one’s phone might be more than a bit confusing. A lot of missed […]
She’s back!!
I know, I know…once again the blog got filed under ‘bury head in sand’ and the year is suddenly rounding up on the middle-end of January. Gadzooks! Apologies (and I have to give an extra thanks very much to a particular reader who gave me a gentle boot up the backside to get going again. You know who you are!) Right then. Where are we? Ahh yes…a smashing and relaxing Xmas with my sister and her fiance, a tub-thumping New […]
Tripping
The woman is blocking my path, thrusting the wheelchair at my legs.‘I don’t need a wheel chair,’ I tell her for the second time. ‘I am visually impaired but there is nothing wrong with my legs.’She is having none of it however. Here in Philadelphia airport the disabled Are Assisted In A Wheelchair, dammit!‘It will be faster,’ she says. . She is pretty solid and behind her is a rattled looking security guard. Behind me the passengers are getting restless […]