Janet Orchard looks back on a lifetime of connections
The theme for last week’s World MS Day was ‘connections’, kind of ironic in these days of not being able to be physically connected to anyone. But it got me thinking about my own connections over the years.
When diagnosed I retreated into my shell. In 1995 there was no Internet for the general public, no Google, no one to tell me what to do. I had been connected (we called it networking back then) in a demanding career, so frantic that I hadn’t had time to be connected on a personal level to many. Business acquaintances fled – they didn’t want to be connected with someone unable to be the same as them and I felt they saw no value in my life any more.
I was still connected with the restaurant world from where I gained some lovely friends.
Bedridden for the first three months, I felt very vulnerable and disconnected but didn’t let it stop me. My neurologist had told me to continue life as normal and not even research the subject or connect with others with multiple sclerosis (MS).
Time to get a new life. I upped roots to live in Vietnam where I was wonderfully supported as I connected with many caring Vietnamese, with whom I am still friends today. No one knew what MS was. It was translated (wrongly) for the gardener who eyed me suspiciously for a while wondering if my brain was about to fall out. I shared his views but generally forgot about MS as neither medications (luckily) nor diet options (sadly) were on the cards.
Back in Blighty
Upon my return to the UK in 1999 the Internet was blossoming. I could become connected. My first start was with a wheelchair specialist to enable me to do more than stagger a few paces with a cane. My second was an MS therapy centre. My third the MS nurse who did her damnedest to change my primary progressive MS diagnosis to relapsing remitting MS so she could get another patient on Beta-interferon. We didn’t connect.
I subscribed to an MS magazine which would send me into depression even as it landed on the doormat. Oh, life was going to be exciting. Living in Scotland, a far cry from Vietnam, my connections were limited.
The MS capital
There were many people with MS. I saw them being ferried around in minibuses to health centres and hyperbaric oxygen chambers. Neurologists plied me with drugs, brain fog was new to me, such that I couldn’t even connect to myself let alone anyone else. Although I got off lightly, refusing all but a few drugs (Amitriptyline, Ditropan, Baclofen – the latter rendered my legs completely useless).
I lived pretty much in isolation, apart from a lovely neighbour who was well versed in MS, having lived in the world’s capital of the condition for so long. She would carry bundles of Internet-ordered research books for me across the lawn and get my central heating working again when my husband was away on one of his many business trips.
I could see no way out of the MS nightmare which seemed to be a question of being kept alive (if one can call it that) on drugs.
The natural approach
Fortunately I was still connected to many old friends. One, a medical rep as it happens, sent me a copy of The Multiple Sclerosis Resource Centre’s A to Z Guide to Complementary Therapies by Judy Graham. I almost cried with joy. At last, there was a way to heal rather than band-aid the problem. It would mean a lot of research and networking with like-minded souls.
I swapped my other depressing MS magazines and their obituary columns for New Pathways, becoming a regular writer. Through New Pathways, I started to build my network. The editor Judy Graham patiently edited my articles. Ashton Embry changed my life with the Best Bet Diet. Following Mat Embry’s journey (diagnosed the same year as me) I had found others who were not going to be drugged out of existence.
After 11 years on the Best Bet Diet I realised that my body needed a more extreme plan. Researching candidiasis led me to the late Ann Boroch who was the connection I had needed, encouraging me that yes, I would get out of my wheelchair, with diligence and patience. She was so generous with her time as I learnt from the oracle herself what candidiasis was all about.
With my building blocks in place I set off for my next phase of life in Catalunya, the place to which I had had more connection than any other, having lived there under Franco in the early 1970s and visited frequently since, working out of Madrid and Barcelona in the 1980s, I had been well connected in the business world.
It was a place I could call home at last and start to get my connections really underway, holistically. Massage therapists, cranio-sacral therapists, energy practitioners, health food store owners, organic farmers, cheesemongers, fishmongers, olive specialists, organic meat suppliers, cannabis grow shop owners, restaurateurs – there was so much to choose from.
The missing connection was mainstream medicine, which is what of course the MS Society would prefer me to be connected to.
Since the early days of Facebook I have been connecting with others with MS, sharing our journeys and our distrust of the ‘supportive’ disease-modifying therapies that have killed many of our friends and left others unable to do much connecting at all.
Being connected in this way is priceless. We all know who to trust, and who amongst us is the font of knowledge on anything we may need to know, be it natural supplements, foods, meditation, counselling, dentistry, chemistry, hypnotherapy, emotional freedom technique (tapping), blogging, mobility devices, children and pets with candidiasis, aromatherapy, massage, exercise, inspirational quotes, music, physiotherapy, humour (finding the funny side of life with MS is possible), fluency on the subject in various obscure languages, how to navigate FB… the list is endless. By connecting to all these people, not just with MS but the wider audience of those with candidiasis which may caused the problem in the first place, we are creating positive change.
Every week I receive a message from someone whose life is back on track, who was helped by our connection.
Thank you to all those I have had the privilege to learn from.
Just as I had finished writing this, one of my lovely connected friends posted as if she knew, “Never doubt that a small group of thoughtful, committed people can change the world. Indeed. It is the only thing that ever has.” It’s a quote from Margaret Mead the American anthropologist.