It was a sunny Lower East Side of Manhattan Sunday morning. The bulbous New York Times was shoved, just about, under my arm. I drank a coffee in the sheltered backyard of a diner after surviving the denizens of the street to get here — this was good shelter.
We were at the height of summer in the mid-’80s — the decade, not the temperature. It also was early — either I’d had a quiet Saturday night (unlikely) or I’d been up all night (likely). Whichever, the sun hadn’t heated the concrete enough for the acrid stench of rat urine to permeate. Lou Reed never mentioned that in his song!
The present-day Sunday morning, I managed to scramble out of bed on my own and was now sitting on my ever-present chair-commode feeling terrible. It was going to be a bad day.
For the next two hours, it was. My right arm ached and I could barely move.
Ibuprofen shifted the ache and my mood and body lightened.
Suddenly, I was tidying and getting stuck in the enormous amount of paperwork that had been getting me down. I breezed through what was left of my bookings work — six performers for every Tuesday until the end of September. I’ve been doing this for about 30 years and it’s still a nightmare.
Then, a whole slew of disabled paperwork was dispatched.
The U.K. left its bureaucratic imprint on India, where everything is purportedly still ponderously done in triplicate — I know someone who’s been in the thrall of it for at least a decade. But it’s also barely changed here. Nearly everything the disabled have to fill out is in writing! With MS, this obviously is challenging. I’m typing this now with mostly my speedy left hand. I write with my much-diminished right.
The powers seem to think that someone else will do it for us. Well, pardon me, but my wife has enough to do at the moment. If you don’t have a family carer, then good luck with the 30 minutes a day you get from outside government help. I still have a 40-page form to fill out by hand. I’d rather do a tax return, which at least in the U.K. we can now do online. Thankfully, I got an extension — never thought I’d be a student again!
To my own surprise, I was done. It was 5:30 p.m. I even had the energy for a shower.
The downstairs of my house is currently being adapted with a wet room big enough for a wheelchair. But for the moment, I have to clamber into a shower unit that at times can take hours for me to build up the energy for. Unfortunately, I can no longer clamber out of it on my own.
Also, because of my constant fight with lymphedema, I then have to bandage my lower legs and feet like an Egyptian mummy. It has taken me seven hours to get through this process. This day, I did it in two.
It started as the worst of Sundays, but ended as the best.
In fact, in Lou’s words, “It’s nothing at all.”
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