In the spring of 2006 I returned to Seattle from a winter in west Kerry that would eventually serve as the foundation for my recently published memoir, Chef Interrupted. While still settling back into the life I'd put on hold to chase a fading dream, I was asked by Rose Pike, the woman who would go on to be my long-time editor and friend, if I'd be willing to write a blog about my experience living with multiple sclerosis (MS).
I said, 'Sure… What's a blog?'
Even into our twelfth year of writing the 'Trevis L. Gleason's Life with MS' blog and over 1,300 online postings, I don't feel like I'm an authority on the disease multiple sclerosis. Like an estimated 9,000 others living in Ireland with the disease, however, I have become something of an expert at living my life with the insidious thief that is MS.
* What Is Multiple sclerosis?
Multiple Sclerosis is a degenerative disease of the central nervous system - brain and spinal cord. The central nervous system acts like a telephone switchboard sending electrical messages along the nerves to various parts of the body. These electrical messages instruct the body's members to perform various tasks, such as movement or thought. The way MS is thought to work begins with members of the body's own defense system deciding that the protective coating - the myelin sheath - of the nerves that lead from the brain, down the spinal cord and out to every part of the body would make for a tasty little snack.
MS can affect most of the body's functions; legs, eyes, bladder, hands, feet, muscles, organs, motor function, sex, digestion, you name it. There is no part of our bodies that cannot be affected by MS. Every one of us who lives with the disease knows this, but we get on with our lives each day the best we can.
* The living part
Because of our collective focus on the living part of the disease, I was very happy to hear that the theme for World MS Day 2017 on May 31 was set to be 'Life with MS'. That's a theme I can get behind because multiple sclerosis isn't a death sentence, it's a life sentence. The faster those of us living with MS and those living with us can get our heads around the living part, the better for ourselves, our families, our employers, our communities, and nations.
I'll never give out to someone with any chronic illness who is having a difficult time getting out of their own way when it comes to this phase of coping. I often say of my experience that it took me five years to get my head around what MS was doing to my brain and body before I could even begin to get my heart around the idea of living a life with the disease.
Like many who live with difficult conditions, I'd like to go on the record that every time we are called 'sufferers', reported as 'afflicted by' our illness or identified as 'patients' when we're not actually visiting our medical team, we feel as though the world around us is trying to diminish our existence in some way. We will have no more of it. We are not our diseases. We live with our conditions. We are persons living with MS.
We live with our diseases. We live with our difficulties. We live with the knowledge that things will likely get worse, not better. But We Live… and we have gifts to share with the world.
Against the advice of my MS-specialising neurologist in America, my wife Caryn and I moved to Ireland in 2012 to increase our quality of life and, as we say, 'Live the dream while we still can.'
Why would the fresh air, moderate clime, healthful foods and a slower pace be against my doctor's recommendations? Well, as MS Ireland recently published the country's state of MS care in advance of World MS Day you can perhaps see why.
• The number of specialist nurses is significantly below what is recommended for our population with less than half the recommended number of MS nurses.
• Every hospital group exceeds the ratio for consultant neurologists for our population.
• No centre has MRI access for routine referrals in under two months and seven of the 11 neurology centres cannot get access within one year of referral.
It's difficult getting on with one's life when the healthcare deck is stacked against us in such fashion, but we do our best.
MS is an expensive disease as well.
A report jointly published by MS Ireland and Novartis in 2015 stated that: 'MS costs Irish society more than €429 million each year resulting from direct costs, indirect costs, intangible costs, and costs associated with relapse', with an average societal expenditure of €47,600 per man, woman and child living with the disease in Ireland. That same 'average person' with MS receives nearly 1,000 hours of care per year, most of which are informally provided and unpaid with 60pc of those living with MS reporting that their spouse or partner is the main caregiver, because living with a disease like ours requires a little extra time, a little extra effort, and a little extra help.
To that end, MS Ireland and Novartis are launching a new report on MS and quality of life on World MS Day, at an event in Leinster House. At the event recommendations regarding the need to invest in neurology and neuro-rehabilitation services in order to increase quality of life while lowering the overall cost of living with the disease will be put forth to legislators, media and the public.
* Employment and engagement are the key to resilience
Not only are costs kept lower for society if people with MS - and other debilitating diseases - are allowed to stay in the work force longer, but research published late last year (Battalio, et al) suggests that we cope better, we solve problems more effectively and we bounce back from difficult situations better - a term the researchers deemed 'resilience' - when we are engaged with the world around us.
And it's not just MS. People living with various forms of muscular dystrophy, post poliomyelitis syndrome, and spinal cord injury were also part of the cadre of research subjects in the study.
One would think (or at least hope) that elected officials would prioritise employment retention programs for people with disabilities knowing, as they have for some time, that a person with MS has a relatively short employment span post diagnosis. We don't want to be, as an Immigration official said of me, a 'potential burden to society'. We want to be productive members of our communities. We want to work as long as possible. We and our society are better off if people living with multiple sclerosis are allowed, encouraged and, yes, assisted a little in staying connected with the world around us.
A study published in 2009 by Zwibel, stated that, 'Around 15 years after the onset of MS, between 60pc and 80pc of patients would have lost their jobs.' And a 2008 review across nine countries in Europe found unemployment rates for people with MS ranging from a low of 58pc (Italy) to a high of 74pc (Spain). So keeping people with MS engaged and employed isn't simply an Irish issue. More must be done - with tangible financial savings and socio-economic benefit to be had - to invest in keeping newly diagnosed people in the workforce and assisting people with MS and other disabilities to find a way back to work.
My name is Trevis Gleason, I am a chef by training, a food scientist by education, a writer by passion, and I live with multiple sclerosis. Like my MS brothers and sisters in Ireland, the USA and around the world, my hopes and aspirations are to be a part of making the world a little bit better for all of us. I'm known to quip that 'we've all got something and there ain't none of us getting out of here alive.' But while we are here… life with MS is all about the living part.
* Trevis L. Gleason is the author of Chef Interrupted - Discovering Life's Second Course in Ireland with Multiple Sclerosis, published by The Collins Press, €12.99.