Briefly Escaping a Progressive Illness

So I know I’m lucky. I have a wonderful family and close friends. I made it to 53 before medical retirement and after an amazing career. I keep getting wonderful representation and speaking opportunities out of the blue. So, despite Kate Winslet *still* not having picked up the telephone, all in all I’m having a stonking time.

But having an overwhelmingly shitty disease pretty shittily is shitty nonetheless. I’m proud to be disabled, proud of how I handle it. I just need a break from it every so often.

Adrenaline Junkie
Outside family and friendship fun, my general approach to escaping Multiple Sclerosis is to pursue ‘heavy nonsensing’. The scarier the better. Adrenaline rocks!

With the help of organisations like Http://www.Sportability., I get fabulous chances to have a pop at Microlight-ing, Quad Biking, seated ski-ing and indoor skydiving. I used to proper skydive until I got too disabled, boo! Health and Safety, meh!

I play Wheelchair Rugby for Bournemouth Lions when time and energy permit. I’m really, really crap, but I love it.

A subtle person, yesterday. Definitely not having a cut-price mid-life crisis. At all. No sir-ree!

And recently through former work colleagues and still friends, I had a fab time Zipwiring in North Wales. I was seriously well looked after, and all I can say is, ‘whee!’ https://youtu.be/1US3CDuWn4I

Heavy nonsensing. Still, much as though I’ll pursue all this – and seek new opportunities – forever and a day, they are also all over quickly. Indoor skydiving, you are in and out in 90 mins. Likewise Microlighting. The best extended fun I can have is Wheelchair Rugby day. Either because it takes me two hours each way for a three hour training session for Bournemouth Lions, or a local-ish tournament lasts 9am to 4pm.

Tall Ship Sailing with http://Www.jubileesailingtrust.org

So it was a new sense of freedom and thrills for me to brave a tall ship adventure, crewing the glorious ‘Tenacious’ for a week. Portsmouth to St Malo via the Channel Isles and back. The Tenacious is a fully accessible ship with berths for up to eight wheelchair users. A mix of professional crew, able-bodied and disabled volunteers team up to sail the high seas.

Our particular adventure was MSer heavy, but there was also a chap with less than 10% vision (70+ voyages and counting!), a delightful deaf lady (expert lip-reader!) and an amputee, (Scottish and hilarious). All disabilities catered for! And all of us expected to play our part in our allotted watch. I hauled ropes, worked in the mess, steered the ship, kept watch, hailed the crew, cleaned the decks.

A desperately handsome, if strangely dressed man, yesterday. He is entrusted with the safety of 40 or more people. Fools!

Your friendly neighbourhood translator, St Malo, yesterday. He may be a little tiddly.

Heaving, yesterday.

I was a terror on the loud hailer at change of watch. Getting more and more outrageous with my claims about Sark, sightings of hump-backed whales and the date the sea was invented. I was rather more helpful to the Tenacious cause when we moored at St Malo. With my fluent(ish) French I was ambassador-in-chief in explaining to the queues of gawkers popping to see the most beautiful ship among hundreds moored. I can’t tell you how nice it is to be stared at for a tall-ship rather than a wheelchair!

It was right on the edge of my disability ‘capacities’, and I’m eternally grateful to the entire team – and particularly my friend Steve – for knowing when to push me, and when to back off.

Steve, left, celebrates an interlude in pushing me around. St Malo

Social Model of Disability

I don’t wanna get too preachy on this ‘happy chappie in a wheelchair’ blog, but have you heard of this phrase? It’s the understanding that disability is something that is created by society.  Inaccessible buildings and events. Poorly designed websites. No dropped kerbs. Crap parking. If I can sail the largest tallship built in the UK in the last 100 years and ZipWire the fastest line in the world, I’d say there’s very little excuse for anywhere to block up to a fifth of the population from enjoying what everybody else does. 75% of disabled households have turned away from a business because of a poor experience. A no-brainer?

I’m gonna keep hunting for experiences and adventures right on my limits. And on grumpy days calling out non-inclusive businesses and events.

Can I manage another Tenacious sail? I read somewhere that Teletubbies is having a reboot. In the words of Tinky Winky and LaLa, ‘Again again!’

A lovely film of our adventures! https://youtu.be/90Qxi-A2_R0