A Sense of Pride

I wrote this piece for the MS Ireland MS and Me blog. This is Pride month and next Saturday, 30th June, there will be a massive Pride parade in Dublin.

This article puts two important aspects of my life together and I wondered how to do it. What is pride about? Is it about identity? Is it about confidence? Then I stopped wondering. This story is about when I stopped pretending I was someone I wasn’t and began to be who I was meant to be. Twice. As uncomfortable as it was at the start, there could not be any other way.

I ‘came out’ as gay to my family in my teens. It was a surprise to some, it confirmed for others what they always thought (my affinity for Doris Day movies was NOT for the Cary Grant cameo and yes, I was infatuated with Steffi Graf) and other people I lost contact with. Little did I realise that my ‘coming out’ would help me later on in life when I was diagnosed with MS. I’d walked the fear-paved path before, disconnected from my family and friends. Some of the disconnection was all mine as I struggled to find the words for what I was going through. I took myself away to the city, looked for people like me, built connections with other souls and gradually came home in myself. But when I returned, the greatest surprise was the welcome, the embrace from my family and friends when I did reveal my glorious self.

When I was first diagnosed with MS, the questions rose again. Who do I tell? How will they react? What will they say? When do I tell them? How will I tell them? What do I say when they react to me? Where are the other {young}people with MS? All the questions I had coming out built a resilience I never appreciated until I had to tap into it, again.

In the past, I’ve said that disclosing I have MS to people is like coming out. Yes, in that I’m making myself vulnerable and telling someone something about myself that is different to the typical human experience. And no because I’ve learned the hard way that difference is something humans notice and being noticed can be dangerous. Thankfully, it is here that the power of community and patient empowerment has made all the difference; despite the danger I wouldn’t have it any other way.

I couldn’t find other young people with MS to talk to when I was first diagnosed so I set up a Meetup group. Since 2010 we have been meeting monthly in the IFI Cafe in Dublin, every time creating a safe space for people newly diagnosed (6 weeks was the newest person) and the more long-time MSers can get together and talk. There is no obligation, the only expectation is that you be yourself and allow others the same respect.

This for me is what pride is about- celebrating my unique human experience while allowing others to do the same. As patient pride/patient empowerment progresses and the other stakeholders move over to allow the patient at the table, the situation for people with MS is improving. But we must remind ourselves of the person with MS who today is in an inadequate healthcare facility or to the person unable to access counseling or to the newly diagnosed person shuffled out of a clinic with just leaflets to hold onto. Visibility is important not just for ourselves but for the people struggling with life with MS, those who will be diagnosed with MS and for better public understanding of this traumatic condition. Being visible isn’t for everyone, we know it is dangerous, but for those who do choose to join the Movement, there are a whole lot of us waiting for you.

The Dublin MS Meetup Group has more than 200 people with MS as members, meets every month in an accessible location in Dublin city centre and welcomes newbies. Join up here: Dublin MS Meetup. 

Thanks to MS Ireland for giving me a platform to write about living with MS. Please share widely, I want people with MS who are struggling to know that there is a community waiting for them.

When ACEs High is not a good thing

This is a brilliant talk from Dr. Nadine Burke Harris. She talks about The Adverse Childhood Experiences Study (ACE). Are ACEs  the greatest unaddressed public health threat facing the world?

“We understand how early exposure to adversity affects the developing bodies and brains of of children”

More than 17,000 adults took part in the original Adverse Childhood Experiences Study at Kaiser Permanente from 1995 to 1997.

“ACEs are common. Almost two-thirds of study participants reported at least one ACE, and more than one in five reported three or more ACEs.

The ACE score, a total sum of the different categories of ACEs reported by participants, is used to assess cumulative childhood stress. Study findings repeatedly reveal a graded dose-response relationship between ACEs and negative health and well-being outcomes across the life course.

Image from the website of the CDC

Being exposed to trauma and toxic stress everyday in childhood messes with the brain-body stress response system. It impacts the development of so many body responses.

“When the number of ACEs increases so does the risk for the following:

• Alcoholism and alcohol abuse
• Chronic obstructive pulmonary disease
• Depression
• Fetal death
• Health-related quality of life
• Illicit drug use
• Ischemic heart disease
• Liver disease
• Poor work performance
• Financial stress
• Risk for intimate partner violence”

Here’s a list of the conditions and diseases that are related to high ACEs scores. This is a topic I’ll be returning to in the coming months.

From online support to Face to face

The current situation for young people with MS in the early 20s or under-18, is urgent. 

We know this is a formative stage of life, I know that support post-diagnosis has the potential to impact positively or negatively, the next 50-70 years of life. When diagnosed we’re are presented with awful news. It is how we deal with it, the support we get and the expectations from those around us that will influence our choices and how great our life will be. As the good folks at ShiftMS say, MS doesn’t mean giving up on your ambitions, just reimagining how to achieve them.
Dublin MS Meetup Group

I started the group in March 2010; I wanted to connect with other people with MS, particularly those who were of similar age/life stage as I am. From day-to-day management, diet, fatigue, medication, medical professionals, relationships, coping strategies, treatment information…we talk about all of this and none of it too. Essentially, it is about meeting other people, making friends, sharing experiences and building relationships of solidarity with people who understand what we might be going through without having to explain every little thing about our MS.

Monthly Meetings

The group meets every month in the IFI Cinema in Temple Bar, Dublin, on Saturdays around noon. There’s a Meetup page for the group (http://www.meetup.com/Dublin-Multiple-Sclerosis-Group/. People sign up to it and see the details about the dates and times of Meetups, make suggestions and share information. We alternate in terms of those who host the meetup.

I’m shy! Meeter Greeter for newbies

An important aspect of the group is the Meeter Greeter- someone to meet before the general gathering. This makes it easier in terms of feeling welcome and getting to know people.

Facilitation

Usually I facilitate the group (in as much as a group of adults need) and we are very mindful of the need to ensure it’s a safe space for people to express themselves, to be heard and to be listened to. It is also a place to enjoy the banter and the company of others!

Get online and connect

Shift.ms is an online forum for people with MS and is particularly aimed at young people. I have searched and there are a number of people under 18 on the site that I would encourage young people with paediatric MS to connect with.

Connecting with other people is a great way to discover and replenish your lust of life in those early days post-diagnosis. 

© Emma Rogan 2017

What Happens Now?

Post- diagnosis II

Nothing. By ‘nothing’ I mean everything will change as this unexpected guest comes into your life yet you’ll remain the same. There will be lots going on and life will continue but it’ll be different. There may not be any strike of lightning nor a kairos moment. For some there will be a gentle shift or a massive upheaval. As your family and friends gather around you, (or not) there’s a good chance you’ll be swept up in a numbing tide of non-emotions.

There may be an army of supporters coming around. Or you won’t tell anyone because you’re trying to figure it out for yourself (this I’ll post about later). People are fundamentally well-meaning as they tell you about people they know who have “had MS for years and they’re doing brilliantly” or the catastrophic comments that can’t be described as well meaning. “A wheelchair isn’t the worst thing” or “you’re not going to die from it” or some other really innane  phrase that’ll make you want to SCREAM. They’re just crappy words, those phrases people feel compelled to use when they’re feeling awkward.

That’s where the ‘shit-eating’ grin comes in handy. Somewhere, even in the most unappealing comment, there might be kindness or something useful. Just make sure nothing is wasted, especially your patience!

How do you Remember?

This week I’m delving into life & what  I remember when I think back to life before the day of diagnosis. Kairos moment indeed.

The artist Do Ho Suh has a magical way of re-creating memories. Using fabric and wires he re-builds the places and spaces of his life in almost life-scale monuments. You can step through the door of his New York apartment, peer into his bath tub and spend time in his childhood home in Seoul.

It got me thinking about memories of life pre-diagnosis. I have a vivid memory of leaving an event my Mum had organised to raise money for  a local boy who needed life-saving treatment. As I pulled out of Royal Tara Golf Club on the sunny day I actually said out loud how thankful I was, how blessed I am with great health. I had nothing to worry about, I was working, I was enjoying life and looking to what was ahead. A few months after that special moment that I was diagnosed with MS.

I’m remembering and recalling my memories because it is those sweet times when we breathe in life and relish our life that will be emblazoned on our mind’s eye. In five or ten or thirty years hence we can vividly recall that breath on a particular moment on a certain day and have every cell filled with what we were dreaming of. We are replete with the reminiscing.

We can give up now, disappointed that things didn’t work out the way we hoped and while we’re sitting in the memories of who we were or what might have been, life is passing us by. The end is not far from any of us and yet it is only by looking back, reaching into the past that we can appreciate just how far we have come. No matter what, to be breathing, to be alive and to have today we can, as Lucie Silvas says, wipe the dust from our face and breathe in life.

How do you deal with the what might have been? Talk with the community here or on Twitter @emmadragon

Emma 2016

This weekend, give yourself a break

Up at 3:55, 4:55 in the early hours & proper up at 7:45 this morning with my chirpy, joyful little child, I didn’t get to do my meditation ritual.   I was spurred on to write this after a Tweet from Everyday Mindfulness @mindfuleveryday, below.

I chose to do the wise thing & let myself off the hook. I’m taking moments in the day to recover my peace of mind. Before getting into it, I’d have taken plenty of time to give myself a lot of taunts for not being good enough, what a waste. Anyway, a reminder to self to enjoy this day without being my own worst enemy & instead being a good friend.

“Being hard on yourself for not meditating, is only going to make you less likely to start and keep a meditation habit. 

 #mindfulness”

I’ll just leave that there. Is this your #mindfulness #happyhabit?

MS Readjustment 101

How prepared were you for the morning? I get a lot of slagging for always being ‘surprised’ by it. Some mornings I’m groaning and griping my way to wakefulness yet within minutes, my energy has sparked and I’m all set for the day. 

Preparation ensures no matter what the griping, the day will go as well as possible, because of the prep.

We grow upnourished & prepared for life by our parents, the schools we attend, the role models in our lives, the friends we have and the society we live in. Ready for college, work, relationships and all sorts of other life stuff.

 Credit: Emma Rogan | 2016

No one has ever prepared us for something so catastrophic to our sense of self as a diagnosis of a chronic illness. Dealing with the emotions and psychological effects as well as negotiating the world with a new viewpoint isn’t easy. As we have experienced, being diagnosed can knock a person off-centre. This is a challenge we never expected.

But we can make well-informed choices. Read, read & read some more. 

There are some excellent books and websites out there with some great information to look at. These have been written by people with MS, are all about living the life you want to live and making the most of what you have. It is really important to learn this skill as so often the loss, the ‘what might be’ is easier to focus on when our dreams have been dashed.

Firstly, getting what you put into your body sorted will make a positive difference. 

• Overcoming Multiple Sclerosis by George Jelinek is a book I delve into regularly and I follow what he recommends. There is a website- http://www.overcomingms.com as well as a Facebook page https://www.facebook.com/MultipleSclerosisManagement

• Another is by Dr. Terry Wahls- The Wahls Protocol. Her is the link to more information http://terrywahls.com/about/about-terry-wahls/

• Please also check out http://shift.ms/ the online forum for MS’ers. There is a great film here:http://www.youtube.com/watch?v=tLhutilgq8A 

Talking with other people with MS is important but it is important that it is with a positive, energy enhancing group. Some of the information can be so frightening it makes people shut down completely, go into denial and avoidance. All this means is the fear gets bigger, the stress more stressful and life is badly impacted. It might be an idea to speak to a counsellor as this rage, the WTF, uncertainty and awfulness can really get inside you.

Diagnosis, dealing with the emotions and psychological effects as well as negotiating the world with a new viewpoint isn’t easy. Some things take more time than we realise for us to understand. It gives us a hard landing to realise that we have to take action, to make choices so we can continue to live full lives.

I know it is possible to manage my life with MS, to LIVE to the fullest. For anyone diagnosed with the condition, it is about doing well, getting to a point where we are just getting on and living the life we are meant to live. You can do it; it is just a case of re-imagining and readjusting life to what you need now. And the joy of readjustment is you can always make changes.

Follow me on Twitter for MS updates and health talk @emmadragon

{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.

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.

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.