The kernels orders brought me home

Apart from the first 6 months after diagnosis I tended to stay clear from the MS or Disabled community for many years.The initial period was a dark time, lying in bed with my thoughts about death, disability and how I could be a good dad to my son Connor. No doubt I probably barked on about the shit deal I’d received and must have been quite morose to be around. Of all the people it was Connor’s mum, Tracie, who gave me the impetus to get off my sinking ship.

We parted acrimoniously and still had many years to go before we finally buried the hatchet, but her advice to me one day when picking Con up to ‘Stop being a MS bore’, had a sizeable impact . Tracie had a great knack of capturing the moment and saying it the way it was and later when I mused over the comment, I realised she was right.

I had obviously been passing through a severe period of grieving and loss since my news. One day I’d be in denial of my condition, the next angry, venting my ire at the sky before falling into the inevitable sadness which followed . Tracie’s comment helped me start to accept my diagnosis, moving on from the negativity that had preceded it.

Of course in the next 20 years there would be the odd moan and expletive cutting the air at my dodgy legs or bladder, but getting busy living became the norm and I’ve always used the comment as a bit of reverse psychology if having a bad day for motivation.

Subsequently I withdrew from the MS therapy centre I’d been attending as I felt I was getting to close my enemy. I had immersed myself for 6 months educating myself about what I was up against but was now ready to take the next step. Like Christopher Reeve in the first Superman with all his learning crystals, my time to fly had come.

I didn’t directly associate myself with any disabled group for the next 8 years concentrating on running an Interior design business. This crucially provided the funds to visit Connor in Durham every 3 weeks where his Mum had moved too.

Taking that long road north from London, gave me plenty of time to think about my life and the one thing that never stopped bugging me on that journey was that little MS compartment stuck away in my brain. Constantly reminding me ‘Have you not forgotten something; are you really doing enough’,That kernel slowly drew me back to the fold. It lit a fire, never to be extinguished, it was the pathfinder that led me to my cause.

The interior design business eventually ran out of money but it served its purpose. Con had reached sixteen and all that travelling and touring the north had been worth it – we would always be like peas in a pod, closer than I could ever have hoped for. Now it was my time to follow the Kernels orders and deal with unfinished business.

2007 was a  symbolic year for me as it would mean 10 years since the neurologist had delivered his fateful news. Now that I had more time on my hands I started to plan my first strike back at my adversary. I’d gassed on for to long to my buddy Louis about doing something from Edinburgh to London. He eventually cracked, looked down at me solemnly saying ‘Don’t talk about it anymore, just get on with it’.

So for the next 6 months I did; putting together a team all with MS – in one form of another, to get there by foot or wheel. Coining us the MS-nificent 7 we later set off from North Street, Edinburgh making it to Downing Street, London in 31 days, raising profile but also a considerable amount of money for charity.

At times there was mental anguish, a lot of physical pain and too much red tape on health & safety – that sent me bonkers. However meeting people across the country, all fighting the same fight, gave new meaning to the saying, ‘United we stand, divided we fall’,

The old Kernel was soon active again once the walk had finished. I got a job working for a local disabled charity.  At first I just volunteered helping people fill out DLA forms. It opened my eyes to the difficulties people faced. I helped many with MS but also those with other chronic diseases. Their stories taught me to understand that most disabled people followed similar paths, facing the same pitfalls and mountains to climb. Never more so were we a community in it together.

I later took a paid job with the same charity as a community fundraiser. At first I loved it, opening doors with local businesses taking our message to the community, but soon the old red tape started to take over. Clogged by careerists, lost in countless meetings achieving nothing, the ethos of the place started to ebb away.

Scared to dance with funders and policy makers alike, the management hid behind their salaries and words, offering little transparency or action. It was no place for a maverick with his heart on his sleeve and I grudgingly left after a protracted fall out.

The experience left me disillusioned with the charity sector. Later negative press about the sharing of donors and other underhand tactics by larger organisations soured it even more. I questioned their priorities and mission values, towards those they were set up to help, as much of the time we just seemed to be treading water, making limited progress on public issues affecting disabled people.

However since leaving ‘the third sector’ and my personal experience of its inertia, I’ve gone full circle and returned home somewhat having been taken under the wing of the MS Society. Having re-launched my cooking website the charity has been keen to extol my belief in healthy eating and that everything is alright in moderation.

Subsequently I’ve cooked at MS Life at the Excel centre, appeared in a number of videos for their members and helped with fundraising. The interaction has been good and I’ve met many fine people involved with the charity who are trying to find a way and make a difference. Hopefully the work may drive people to my cooking but I certainly won’t get rich from it – not that I’d expect too as fighting MS needs no inducement as I’m in 110% on all counts.

Like all of us though, I’ve got to make ends meet, so the old kernels been back on it and I reckon between us we’ve come up with quite a cunning plan to alleviate my empty pockets and those of a number of fellow disabled mates, I’ve met on my travels.

Employment rates for disabled people in this country is a bloody disgrace There are millions of talented people chomping at the bit to be given an opportunity to change their lives, yet society holds them back. Well I ain’t having any of that on my watch and next week I’m launching a live streaming video production company, Your Event Stream (YES) staffed entirely by disabled people.

We’re not expecting a bed of roses, things are tough out there, but we intend to kick a few doors in. Julien my creative director, suffers from acute epilepsy and Type 1 diabetes but has a brilliant knowledge of film production and is as good as the best. We’ve then got some great cameraman and production assistants, all who’ve faced adversity and come out the other side from brain injuries, cancer, mental health issues and learning disabilities. We’re all in in it together and excited by this new dawn.

Next week though is a big one for me. Apart from selling the concept of the Disabled film company (please help if you need or know of anyone requiring these services), I start treatment for my MS which has been with me for most of my adult life. Getting infused with Mitoxantrone (chemotherapy drug derived from mustard gas) does not light my fire and comes with its risks, but the results in trials are good and I’ve passed all the tests for inclusion.

So it’s the big push in more ways than one and I’m looking forward to getting in there, helping my fellow disabled warriors; and hopefully starting to regain some of my own lost ground – lets bring it on!!