{MS} Whip-cracking Away! 

Did you ever get bad news? Do you remember the few moments when you saw the face of the person who was about to tell you something you didn’t want to hear? Did they stumble/mumble or were they clear as a bell as they rang your reminder of your own mortality? No? Great. Please don’t read on. 

  But if you have had that concrete stomach feeling, if your self-esteem has taken a blow like it’s like nothing ever before you might understand what I’m going to talk about. Being diagnosed with a chronic illness is a blow to our core, to our identity. What we think about ourselves, our place in the world/relationships/work, who we are, the person we want to be, how we ‘feel’ & think are transformed. It is nothing short of a metaphorical tsunami that washes through our world. There is no more of familiar landscape. It is gone.

Multiple sclerosis comes with a whip that can *crack* wherever, whenever. A sudden dart of burning pain, loss of balance, fatigue or lost for words. One of the ways I’ve dealt with these interruptions is by focusing on my own reality and using other ways to avoid ‘catastrophic thinking‘ (turning off those bells!). As humans, uncertainty is something we deal with every day, not only as someone with MS. However, it is the ‘knowing our own vulnerability’ that magnifies our life experiences, good and bad. I’ve had the worst of days/months but have used all sorts of means (NLP, therapy, socialising, public speaking etc) to deconstruct the experiences so I get through in a mind/body healthy. Tap into your own wealth of experiences and use what you know so you can manage your condition. Self-management is the key to a great life.

I’m an avid reader and have found the experiences of others, business/mind leaders and social innovators really useful- there are always tools for me to pick out and use in my day-to-day. 

  • The Impossible Just Takes a Little Longer by Art Berg
  • Full Catastrophe Living by Jon Kabat Zinn (mindfulness)
  • Richard Branson’s autobiographies 
  • Philosophy
  • Idealistic & deep (Ursula Le Guin; Kahlil Gibran; The Book of Psalms; travel books)

Do you like black & white, the sense of control & certainty? ResiStance is futile! MS is as grey as anything and learning to live in the mystery while (also living fiercely) may be a way to ease the stomach-churning pang of uncertainty. Compassion- rage against the what ifs/whys/hows but also know it will be exhausting and destructive if not balanced with enjoying your one and only life. Self-compassion can be restorative and sustaining- check out Dr. Kirstin Neff http://self-compassion.org/

As the tsunami waters subside on the diagnosis, it’s okay to say no to people who try to tell you what they think is best for you (especially me!) and to disagree. What I mention I have used/am using in my own life and I hope that some of what I share will be of use to you if not this week, some day in the future as you find the ways that work best for you.

Join me on Twitter to chat and talk through the messy things @emmadragon

Multiple Sclerosis: The First F____ed Fortnight

The early days are the most ‘challenging’ as in it is like a dirty dangerous whirlwind where emotions, words and all sense of self goes whizzing around. The day I walked into Mullingar Accident and Emergency room, I was wearing my jeans and a t-shirt that had seen better days. Two weeks later, not only was that t-shirt gone, the Emma who walked into A&E had disappeared, stepped into a bizarre place of chronic illness and dis-ease.

Daring-Greatly2

Multiple sclerosis- multiple scars? I had brain damage? Those fifteen seconds, when those words went from the consultant’s mouth to my ears, a little part of me died… I picked up the pieces of my broken heart but I still think of old Emma sitting on the edge of the hospital bed and the new Emma, getting up and stumbling, in a post-traumatic shock way, into a new life, a new way of being.

My identity, the idea of myself turned upside down and inside out. I was given some vague information about the MS Society as well as some local groups but every day that week with the pieces of my heart rattling round my pocket, I drove myself to hospital, got my meds and drove myself to work. There’s no doubt, it has been raw, it has been ugly with cursing and swearing, lost relationships dodgy decisions. But I everyday I make peace with myself, I give thanks that I have another moment to live. Because there were times when I didn’t see any hope. I was soaked in blood, sweat and the tears of a thousand years.

I didn’t realise it but that was a magical time when the days came and went, health dripped into me in the form of Solu-Medrone and care from the nursing staff. It was also the worst time of my life when I fu*ked, cursed and got angry as hell and contemplated ending it all.

Now, eight years on I’m still here. I was transmogrified not to someone new, but to my authentic self. I never expected to have to talk to strangers about the life I live. But stories are transformative and we humans are wired for narrative and prose. It is when I recognised the power of authenticity, of whole-hearted living that I learned the power of sharing it with others. We can all do this, in good time, and gradually we can positively affect the lives of the people we work with, our partners, wives, husbands, family and friends. Do it daring greatly.

Bishop Paul Colton’s Address to the Diocesan Synod of Cork, Cloyne and Ross, 2015

ejrogan:

It was a week filled with delight, worry, anticipation and over-whelming joy. The Yes vote not only changed the politics of Ireland, it has changed the people. Lesbian and gay people are no longer allowed to just get ‘gay civil partnered’. We can now be married, no inverted commas necessary.

Originally posted on Latest News from the Church of Ireland Diocese of Cork, Cloyne and Ross:

United Dioceses of Cork, Cloyne and Ross

Diocesan Synod Address given in Cork

by The Right Rev. Dr Paul Colton,

Bishop of Cork, Cloyne and Ross

6th June 2015

Introduction

Dear friends in Christ, we meet as a Diocesan Synod in the name of God the Holy Trinity to reflect again on the work of the local Church here in Cork, Cloyne and Ross.

I referred last year to the work of the the Commission on Episcopal Ministry and Structures, and we welcomed two of the Commission’s members to give us a presentation.  Since then the Commission has published its thinking in a more detailed way.  Moreover, at its meeting in May, the General Synod adopted a resolution welcoming the ‘general principles, analysis and approach to diocesan restructuring outlined’ in the Commission’s report; acknowledged ‘the need for structural change’; and requested the Commission to consult with Diocesan Councils’ and…

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World MS Day 2015

The tremendous passion and purpose for marriage equality that poured out across Ireland last week was invigorating. It’s with this same passion and purpose I ask people to join the 2.3 million people across the world and the 8,000 plus people in Ireland with Multiple Sclerosis as we celebrate World MS Day.
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There is a young woman being diagnosed today. She’s probably in her late 20s, her prime adult years. She’s told about the damage to her brain, her spine and the central nervous system. There is no cure. Because MS affects the central nervous system, the system that controls everything, MS can cause a huge variety of problems including fatigue, loss of balance, cognitive dysfunction, visual difficulties, depression and other symptoms.
 
MS is a chronic, neurological condition that fluctuates, so she’ll learn from healthcare practitioners what it might mean long-term but there are no certainties. She’ll search out information online, look to family and friends for support and turn to the groups and organisation that understand what it means to live with a life-long condition. Gradually, she’ll build her resilience and learn how to manage her condition and thrive again. But it is only because there are people she can trust to support her through the worst of days that she will have a chance to have the best of days again.
 
People with MS are the tip of the iceberg when it comes to brain conditions- there are more than 700,000 people in Ireland with neurological conditions (including Parkinson’s, Huntington’s, Motor Neuron Disease, chronic pain, acquired brain injury, and others) supported by different organisations. The Scheme to Support National Organisations in the Community and Voluntary Sector (SSNO) provides many of these organisations with money to provide services. All neurological organisations that applied, were denied funding (http://www.nai.ie/assets/40/8B140F05-B440-0D0C-D523AFDE2E761C5B_document/SSNO_Briefing_Document_Final_March_11_2015.pdf). The Neurological Alliance of Ireland represents those 700,000 people but for the past eight budgets, not for profit organisations that provide the care to people with neurological conditions have had their funding decimated.
 
We are people with decades to live and huge lives and careers ahead. By investing in neurological services we can ensure that people can be supported to stay well and continue to thrive. We can make the investment and change the course of people’s lives.
 
It was eight years ago this month when the bottom fell out of my world, the universe gave me a massive shake and I looked around for some sort of guidance in all the madness. Funding needs to be restored so people in Ireland with brain conditions are supported through the worst days of their lives. This matters because it is our brain that makes us who we are and I hope those who make the decisions reconsider. On this World MS Day, I’d like to thank the people across the world who have shown me, no matter how bad things are, l am Stronger than MS.

Our dreams are on their way

Have you seen the posters? Can you ever ‘unsee’ them?? It hasn’t been pleasant what with the homophobes firing their ‘pious reasoning’ like an AK47 blast through Irish society with no care for the collateral damage inflicted.

  
These posters never were about debate, they are about sending a message. It sounds something like “If you’re straight, great! If your trying to figure yourself and think you might be gay or lesbian or if you’re gay living out, get back in that confining box we’ve spent centuries making specially for you”.

This Friday 22nd is due to be a typical Irish May Day- sunny, cloudy with the potential for lots of rain. We’ll get up, do our morning things, head out to work or stay home or go to college or do what we’d planned to do. No big deal. But it’s a day when people I don’t know, as well as people I love and care about, can change my life.

I’ve waited a long time to hear so much ‘gay talk’ spoken in public and in ways that weren’t always an attempt to knock people back or a kick people the stomach. I waited for years for ‘some one like me‘ to appear so I wouldn’t feel so desperately alien (Thank you Sen. David Norris, Una Mullaly, Grainne Healy, Ursula Halligan, Panti and the rest of the LGBT Braves). I’m waiting for a time when young lesbian & gay teens don’t have to battle  with bullies or with the demons that tell them they’re somehow 

I waited for years for people like me to be ‘normal’, to go from a sick, slick, dirty personhood (which we never were*) to being washed clean with the acknowledgment, respect and love of others. I’ve waited years for my head and heart not to ‘flip out’ whenever I told someone about myself or my ‘partner'; there’s always an assumption that she’s a he with the follow-up discussion about when I realised I was gay (Have straight people ever thought about when they realised they were straight???).

Like everyone, I’ve had plenty of eejits bully, harass & put me down because of who I am. They’re everywhere, those people who have been so poisoned by life or others that they puke it all over the rest of us in an attempt to make themselves feel better. 

I’ll be going to the Polling Station with my partner, to cast the vote that will mean so much to so many. Our time has come to shine, and should people vote yes, our dreams are on their way.  We’ll be joined by thousands of other people who are voting yes. Together for yes. 

Why don’t we ‘come out’ about Chronic Illness at work?

Aren’t we funny? For years I’ve been told that I don’t look disabled, that I look “better than ever” or some other charming phrase. It is meant as a compliment; it is nice to look healthy and well and I take it as such. But in my work, it isn’t enough- I know that looking healthy and well has become a way for people to dismiss what can be traumatic effects of a chronic illness, neurological or otherwise.

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There aren’t many of us living out and public, although this is changing. Maybe we need something akin to a Pride Parade of all the people with chronic illness in every town so people start to realise that we are everywhere. Old, young, female, male, trans, tall, short, different colours, gay, straight, bi, queer, different faces with different cultures have chronic illnesses, are disabled. We’ve just been afraid to come-out because we know we will be treated differently. Yet, when I was first diagnosed, I needed a hero, a ‘possibility model’, someone who was still working, making the most of her life, no matter what this disease threw at her.

Why is it such a big deal? Why do I or other people with MS need people to ‘come out’ about living with the condition? Growing up gay in Ireland was fairly bleak with the only bit of light the Doris Day musicals or the most likely lesbian found on TV during Wimbledon. When I found someone I could look too, I watched and learned.

We look for people who are like us so we can imagine some day we won’t be afraid any more, just like they aren’t afraid. We don’t come out- we are afraid of questions, the potential pitying, perhaps a little ashamed because we aren’t 100% healthy (not that anyone is ever 100%), afraid of being treated badly, the ‘head tilt’ apology (drops to one side, usually with a frown), dismissive tones and of course, afraid of being fired.

Being brave isn’t easy and I don’t want to be considered ‘brave’ if all I’m doing is being myself. But if we are to think of bravery as being yourself, and by being yourself you bring a different perspective and outlook, we’re on a good path. Diversity is good for business as Sara Sperling, currently Director of Human Resources at Snapchat and former leader of Diversity & Inclusion at Facebook says

“We want diverse teams. The research shows that diverse teams are going to build better products. We don’t have a simple product — we have a complex product. Because of that, we need diverse perspectives and diverse journeys and what that equals is people of different ethnicities and different paths.

If you’re sick or have a chronic illness or something else that causes dis-ease to your body or mind (we’re all going to have it sometime in our lives) wouldn’t you like to stay being you? Keep your aspirations, ambitions, work plans, life-style or dreams of joining the innovation celebration with Richard Branson or Arianna Huffington. In the meantime, think and reflect on why we hide our diseases/chronic conditions in our workplace in this so-called ‘brave new world’? 

Join me on Twitter for to chat about this and other things @emmadragon

This article first published on LinkedIn

Don’t Follow the Calf Path

This week,  I take a look back on the year of MS and Me and reflects on the paths we take through life.

So where are we, as a community, now? What is going on for people with MS or other neurological conditions in 2014 in Ireland? There are thousands of experience with a myriad of stories about how well people are doing, how their daily lives are improved because they are getting the supports they need at a challenging time and how they are keeping themselves well. But the waiting lists remain, people don’t have access to neurologists nor neuropsychologists, to counsellors to talk their feelings out, to employment advisors to work things out or to financial support so they can live beyond a state of penury.

Go your own way!

Go your own way!

But aren’t the lights back on in the country? To look at the news, we see that the country is ‘back on track’ in terms of the economy (never mind the water protests by thousands of people and the cuts across our social systems). Is this the same path trod during the Celtic Tiger years, where people believe the ‘news-speak’ rather than critically examining what’s behind the words? It is just another ‘calf path’ that we are following just because it is the path that is well worn and used?

The Calf Path is a poem by Sam Walter Foss and tells the story of a ‘primeval’ calf as it walks home ‘like a good calf should’. But this calf is wobbly on its legs, going here and there in a crooked way, eventually getting home. The next day, a dog follows the calf’s path, then a bell-weather sheep leads the flock along the crooked path. As it is worn down, going higgledy-piggedly through the woods, it becomes The Way. It is such a crooked path that is cursed by all who use it but use it they must because it is The Way. The path became a lane, the lane became a road that was difficult to walk yet it then a street where thousands every day step their feet. Now, thousands of years on, it is that bendy road that curves this way and that through our community/village/town/city. It is the primeval calf, wobbling its way home thousands of years ago, that is still leading us this way and that.

Adventure on another person’s path is useful for a time but we need to make our own way as we live our own lives. People have been discovering their own way, how to manage a condition that they never expected to come to their door. Whether it is work, family, mothering, activism, relationships, spirituality, incontinence, the balancing act, disclosure, fatigue or something else, it is all being lived by every person, everyday.

We are a eclectic bunch, people with MS. Diverse, determined, struggling, thriving, annoyed, happy and joyful. No matter what, nothing in life can prepare people for the adjustments that MS sometimes forces us to make. At times, we do walk that ‘Calf Path’ because it is easier and it is the best things for us. But don’t let your life be a walk along the path of a creature that bares no resemblance nor has no understanding for what you want for your life.

As this year draws to a close, the MS and Me blog team will look back at this first full calendar year with gratitude that we get to speak of the unique ways we live with MS and share with you failures and successes. Take some time to look back at your own path through the past year and reflect on what has past, your own successes, what could have gone better and what you learned. Reflecting is one way to grow and allows us to look with joy to the days that are to come.

From my family to yours, may your days be happy and  your New Year be filled with joy.

Join me on Twitter for some chats @emmadragon

 

The Calf Path by Sam Walter Foss