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.

 

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. 

Super computer and brain busting Government

At this stage we all know that there is a super computer in your head that has a speed of light connection with your ‘whole’ body. It controls your breathing (now you’ve noticed it, aren’t you glad your subconscious is handling it!), your heart, cells, neurons, neuroglia, thoughts, sleep, feelings, emotions, let you know if you’ve cut your hand or if you’re going to make that catch.

Image: Cartoon a Day

Learning to ride a bike, fly a kite, tap on your phone, play football, read a book, get merry with your mates or fall hopefully in love. You’re creativity, brilliance, the way you think about things, your view on the world, your innovation, that unique contribution only you can make all come from that ball of grey wonder in your skull.

So what?

If your computer gets a virus, knocked about, injured or gets scarred for some freaky weird reason, you can’t get a ‘patch’, update it or replace the hardware. This one is the only version you’re going to get until the promises of Star Trek make their way to our present world. When things go wrong with your super computer, it’s hard to try to figure things out. Brain injury or neurological conditions not only literally mess with your head  (MRI scans are ugly/beautiful sight in my house) your whole sense of self is thrown off balance. Metaphorically, people are thrown off their bikes into a ditch.

So there you are in the ditch and looking for someone to help you out or at least to tell you where you’re at and what’s going on and how to carry on. The Neurological Alliance of Ireland (NAI) represents different people/groups that have helped many of us with neurological conditions of different types (700,000 people in Ireland) out of the ditch. Mags Rogers and Sinead Gleeson from the NAI have stood alongside people with neurological conditions as we’ve dusted ourselves off and attempted to return to life and get back to health. They recognise the importance of services, the vitality of life and the quest to challenge the dismissive attitudes to brain health. This Government still hasn’t funded the Strategy…

Pinky and the Brain

Shutting down dissent
In the last few weeks the NAI have had their core-funding cut and are due to close soon if the decision is not reversed. In February 2013 I spoke to an audience of government TDs, Senators and representatives in Government Buildings how my life was restored with the support of MS Ireland, an NAI member group.  We shared experiences and I thought I’d had some effect.

I’m not going anywhere and this chronic brain condition I’m living with isn’t going to be cured. Radical idea: how about we make the blather about Ireland being great for business, Irish people being great trailblazers and innovators, writers, messages being shouted from the rooftops, valid for everyone, with or without a neurological condition. The one thing we have in common is that lovely brain in our head. During this Year of the Brain, I’m celebrating and supporting the efforts of the NAI and others like them by campaigning to get their funding renewed.

The much lauded but not implemented Neurorehabilitation Strategy 2011-2015
http://www.dohc.ie/publications/NeuroRehab_Services.html
An evasive answer to Deputy Nicky McFadden’s questions on the Neurorehabilitaion Strategy (2011-2015) March 2013 from the Minister for Health.
http://www.kildarestreet.com/wrans/?id=2013-03-26a.1334

Disclosure: I worked with the NAI on their Manifesto and other campaigns in 2013

© Emma Rogan 2014

Linguistic Gymnastics and Oppression

How do you know you’re oppressed? Is it the ‘checking’, the wondering about being spotted, the *flinch* when someone looks at you & your girlfriend/boyfriend-then back to you- then sneers/comments/spits/laughs at something that, from your perspective, is not at all funny. Or they don’t really mean to be mean. Or is it all the more obvious when someone else tells you it’s not oppression that you’re experiencing and you must be mistaken and uninformed/uneducated/unaware/unlike them or even so reactive that you misunderstand what’s true.

Etymological gymnastics have been the distraction of choice for some people in Ireland recently. The subject matter, matters (Same sex civil marriage) but who gets to tell people whether they’re being oppressed has really captured attention and has people thinking deeper about what it means to be considered not unequal, but just not quite acceptable nor respected in Irish society.

In fact, many people would know that ball of fear in the belly that comes from the discipline and checking, the punishment of self-analysis. What people live with, can gnaw away at the good stuff. That happy feeling that courses through you when life is going exactly like we want it to, can be tainted by that self-oppression. Sometimes we’re afraid that to be ourselves like we’re undeserving of that same joyfulness. But we can’t let it win. It is vital that we don’t shy away from the good stuff.

So, when I need to be reminded of the good stuff and being true to who I am, I look to my LGBT family. With many others, Panti has eloquently dismantled the silence, named the prejudice by speaking out. We all play a role in helping people realise they are okay exactly as they are and they can be happy in their lovely straight/gay/lesbian/bi/trans skin. We all can name oppression, to call it out. Better to call it out from the dark shadows where it festers and into the Bright Light of Reason where we all can see it for what it really is.

How about you? Does oppression feature in your life-experiences? Whether your gay, have MS or there’s something else that causes that ball of fear, please comment.

A little something from Michel Foucoult to finish off

“…if you are not like everybody else, then you are abnormal, if you are abnormal , then you are sick. These three categories, not being like everybody else, not being normal and being sick are in fact very different but have been reduced to the same thing”

Edited 5th February

The Value of Work ¦ Kanchi Ability Café

Kanchi, an organisation that works to change mindsets and behaviours around disability is holding its first Ability Café of 2014 on Thursday, 30th January, from 8.00am – 10.00am and I’m speaking at the event.
The theme for the morning is Managing Fluctuating Conditions in the Workplace and I’m going to speak about current situations, research and all the options available for people and their businesses.

“Approximately 85% of working-age disability is acquired (source: NDA). A number of acquired disabilities can be fluctuating, these include conditions such as; MS, Parkinson’s and Rheumatoid Arthritis. This means that accommodations or adjustments which employees require can change over time.

As an employer how can you best support team members with fluctuating conditions, adapt to their changing needs and ensure that your top talent can remain in the workplace and deliver to the best of their ability?”

Staying or returning to employment plays a significant role in ensuring people maintain their financial independence, stay socially connected and using their skills. All topics will be up for discussion. If you have any questions for me now, please send a comment or connect with me on Twitter @emmadragon
For more information about the event as well as changing attitudes, please go to the Kanchi Network website

The Triumph of a Life Well Lived

As was customary, Friday night is ‘date night’ in my house. The Triumph, a story of spiritual growth and mystical experience, was showing in the Screen in Dublin. A young man, on the quest for answers, visited a holy site of Medjugorje.

Nelson Mandela casts his vote in 1994 Elections

As it turned out something far more important was unfolding in this great world of ours. I returned home, checked Twitter and saw the news that Nelson Mandela was dead. Now, just a day since his passing, there have already been millions of words written about the man, his legacy, who he was, where he came from, what he did, what he inspired and how his existence empowered so many. It doesn’t seem he is dead, just existing in another form. He lives on.

When I was a little girl, I learned about South Africa, a place where white people got to decide how black people lived. I wrote to the Irish Anti-Apartheid Movement asking them what it was I could do. As a little girl, not much but as it turned out, it influenced the course of my life. In secondary school, I followed his journey from prison to the Presidential elections when he triumphed. I have a vivid memory of our history teacher turning on the television during class so we could watch history in the making as Mandela cast his vote in the 1994 South African elections. The queues of people waiting to cast their precious vote looked like delicate lines snaking across the countryside. They knew it was important because Mandela showed them that anything worthwhile is worth waiting for and worth giving all you’ve got.

Sadness is quick to the heart when I realise this fine human is no longer with us. Thankfully Nelson Mandela lived a big life, walked this earth loudly, a reminder of what was possible. It matters how people treat one another but no matter about prejudiced understanding, people have and will prevail against all odds. Because of Nelson Mandela, we know what is possible. He made the impossible possible by being instrumental in transforming a corrupted state of racist toxicity into the Rainbow Nation. When it came to transforming South Africa, the impossible just took a little longer.

It is with thanks I see the abundance of one person’s life so great to nourish and transform the lives of millions of others. The apartheid regime attempted to limit Nelson Mandela by planting him in the confines of prison Robben Island, silencing his message. No matter. He triumphed with dignity and grace and what a joyful noise he made doing it! Beyond all our years, while there will never be another like him, we are all the richer for knowing Mandiba. He lives on in each person that changes themselves to be a better person and to be instruments of peace… balm to this troubled world.

The Elders http://theelders.org/

Marianne Williamson has an excellent piece that Mandela used in his inaugural speech. It is also a great message for us all!

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

Marianne Williamson

How Do You Measure a Year?

As with the darker days and lower light of winter, the night has now fallen on my World of Difference year. Today, Friday 15th November, is my final day working for Multiple Sclerosis Ireland. From the bright day in 2012 when I was chosen to work for the charity of my choice, MS Ireland, through to today, each one of the 365 days that passed has brought something new.

How do you measure a year? To paraphrase a line from Rent, is it in sunrises, in sunsets, in cups of coffee? In my mind’s eye, I see the moment I stepped into a room full of Vodafone interviewers to tell them about multiple sclerosis. I was there to explain what was so important about the work of MS Ireland, for the lives of people with MS and for myself. After the adrenaline, absolute calm flowed through as I told my own story. It was authentic, it was real and I was purposeful. Whatever those people heard, I floated out of the room knowing the interview went well. I left them with booklets about life with MS and knew that at least nine more people had more information, more knowledge and could connect better with people living with multiple sclerosis. Then, I really won….

I started working as Policy and Information Officer with MS Ireland in November 2012. I’ve spent the year in learning-mode, delving into the world of health policy research, revealing the connections between policies and people, empowering people with MS and engaging change-makers, raising awareness about young people with MS in Ireland and Europe; using my personal narrative I painted a picture so people could understand and connect. Throughout, I’ve built & nurtured life-long relationships with people from different places around the globe.

Discovery

From any given week this year, there are memories. In November, it started with a visit to Rome to meet & present to hundreds of young Italians with MS, presenting in the AV Room of Leinster House (The Irish Parliament), the sunny World MS Day on Grafton Street with Senator Norris who regaled us with yarns and his favourite quote from Roald Dahl’s Little Red Riding Hood (she ‘pulled a pistol from her knickers!’); taking part in European Month of the Brain at the European Patients Forum Conference, speaking at the NAI Wellness Day in Limerick, welcoming people to the Young Peoples’ Event in Dublin, producing videos with the Vodafone Film Crew, talking with friends from across the world at the MS Patient Summit in Dublin, running the Brussels Half-Marathon with the EMSP Team and working with my colleagues in MS Ireland.

525, 900 Minutes

We measure our lives in years so we can remember, so we can quantify what we have done with our short time on earth. It isn’t the cups of coffee that we recall, it is the people we shared the time with as we sat there sipping. It isn’t just the presentations I made, it is the people who listened and who later shared their ideas with me. Call it connection, call it love, call it what you want. I feel it, I live it, I hear it and I see it in those people I share my life with. And it’s this ‘IT’ that makes the World of Difference.

I’m looking ahead to my next adventure. When the sun rises in the morning, the day dawns on tomorrow, I’ll be going to the next stage of my life. By embodying the riches of friendship, love and the blessings of my World of Difference year I am looking forward to the next 365 days, all 525,900 glorious minutes!

Wishing you all peace & health to the tune of Seasons of Love!